Cerebral Palsy

Cerebral Palsy
A Johns Hopkins Press Health Book

Cerebral Palsy
A Complete Guide for Caregiving
second edition
Freeman Miller, M.D.

Steven J. Bachrach, M.D.
with Marilyn L. Boos, R.N.C., M.S.
Kirk Dabney, M.D.
Linda DuVy, B.S., P.A.-C.
Robin C. Meyers, M.P.H., R.D.
Douglas T. Pearson, Ph.D.
Kathleen Trzcinski, R.N., M.S.N., C.R.N.P.
Rhonda S. Walter, M.D.
Joan Lenett Whinston
t h e j o h n s h o p k i n s u n i v e rs i t y p r es s
b a lt i m o r e
Note to the Reader
This book embodies our approach to cerebral palsy in general. It was not written
about your child. While we believe and practice its philosophy, we adjust our ap-
proach to suit each child’s particular need and each family’s situation. We would not
treat your child without Wrst learning a great deal about him or her, and so your
child’s treatment should not be based solely on what is written here. It must be de-
veloped in a dialogue between you and your child’s physician. Our book is written
to help you with that dialogue.
© 1995, 2006 The Johns Hopkins University Press

All rights reserved. Published 2006
Printed in the United States of America on acid-free paper
9 8 7 6 5 4 3 2 1
The Johns Hopkins University Press

2715 North Charles Street
Baltimore, Maryland 21218-4363
Library of Congress Cataloging-in-Publication Data
Miller, Freeman.
Cerebral palsy : a complete guide for caregiving / Freeman Miller, Steven J.
Bachrach ; with Marilyn L. Boos . . . [et al.].—2nd ed.
p. ; cm.
“A Johns Hopkins Press health book”
Includes bibliographical references and index.
ISBN 0-8018-8354-7 (alk. paper)—ISBN 0-8018-8355-5 (pbk. : alk. paper)
1. Cerebral palsied children. 2. Cerebral palsy—Popular works. I. Bachrach,
Steven J. II. Title. III. Series.
[DNLM: 1. Cerebral Palsy. 2. Caregivers. WS 342 M647c 2006]
RJ496.C4M53 2006
618.92'836—dc22 2005052683
A catalog record for this book is available from the British Library.
The preparation of illustrations for this book was supported in part by funding from
the Nemours Research Programs of the Nemours Foundation. Illustrations on
pages vi, viii, 2, 16, 40, 96, 122, 144, 166, 206, 228, 246, 256, and 268 are by Kathleen
King; all other illustrations are by Jacqueline SchaVer.
Contents
Foreword, by Joan Lenett Whinston vii

Preface ix
Acknowledgments xi
Contributors xiii
PA RT
1 C E R E B RA L PALSY H A N D B O O K
1. What Is Cerebral Palsy? 3

2. An Overview of Early Child Development 17
3. Medical Problems Associated with Cerebral Palsy 41
4. Intellectual, Psychological, and Social Development 97
5. Hemiplegia 123
6. Diplegia 145
7. Quadriplegia 167
8. The Adult with Cerebral Palsy 207
9. How the Health Care System Works 229
10. Financing Care for the Child with Cerebral Palsy 247
11. Navigating the Educational System 257
12. Being an Advocate for Your Child: Using the Legal System 269
2
PA RT CAREGIVING TECHNIQUES
Taking Care of Yourself When You Care for Others 297

Protecting the Caregiver’s Back: Basic Body Mechanics 300
Making Things Easier for You and Your Child: Home ModiWcations 302
Choosing Appropriate Seating 304
Choosing and Using Car Seats 309
About Wheelchair Maintenance 310
Pressure Management Awareness 312
vi ♦ contents
Choosing a Stander 313

About Walkers and Gait Trainers 316
About Braces 317
Choosing the Correct Shoes 319
Increasing Independence with Service Dogs 320
Managing the System 321
Working with a Case Manager 322
Letters of Medical Necessity 323
Occupations for Adults with Cerebral Palsy 325
About Hospitalization 327
Keeping Medical History Records 331
Life Planning Process 335
About Casts 337
Using Nutritional Boosters 340
Managing Tube Feedings 341
Oral Hygiene: Providing Mouth and Teeth Care 343
Toilet Training Your Child 344
Giving an Enema 346
Giving Rectal Medications or Suppositories 347
Suctioning Techniques 349
PA RT
3 C E R E B RA L PA LSY E N CYC LO P E D I A
From Achilles Tendon Lengthening to

Vocational Rehabilitation 353
Resources: Support Groups, Foundations,

and Government Agencies 463
Recommended Reading and Toys, and
Where to Go to Chat with Others 473
Index 477
Foreword
♦ P R O B A B LY E V E R Y P A R E N T of every child who has a

health problem remembers the Wrst time someone gave that problem a
name. It may have been in the hospital, soon after the baby was born, or it
may have been months, or even years, later. Hearing those words about your
child, and wanting so much for them not to be true, is something that stays
forever in your mind.
For my husband and me, that moment occurred more than twenty-Wve
years ago. It was when our son Joshua was six months old. We suspected
something was wrong with Josh, and our pediatrician had recommended
that we consult with a specialist. But we were not prepared to have the doc-
tor tell us that Josh had cerebral palsy, and that his development was going
to be delayed.
Cerebral palsy. We had heard the words, of course, but they had never be-
fore had any relation to us. What did these words mean for the future of our
precious son? As time went on, we found out that it’s diYcult to know, in
the early years of childhood, just what cerebral palsy does mean for an indi-
vidual child. With cerebral palsy, as with many things in life, only time will
tell. But waiting, and not knowing, is a very diYcult thing when it involves
your child.
While we were searching for answers, my husband and I met Dr. Freeman
Miller and Dr. Steven Bachrach. We were so impressed with the concern and
sensitivity they showed toward Josh, and toward us, that we knew we’d
found the doctors who not only would help our family through the diYcult
times but would cheer along with us when times were good. Their medical
advice proved to be among the most valuable we’d ever received, and their
open, caring, and honest approach let us know that they would be there
for us when we needed them. Drs. Bachrach and Miller have been there all
through the years, even after Josh was no longer eligible for treatment at the
Alfred I. duPont Hospital for Children because of age restrictions. Both my
husband and I shall be ever appreciative and grateful.
Sound professional advice and a caring commitment to do what’s best
for your child. That’s what anyone who is the parent of a child with cerebral
viii ♦ foreword
palsy wants. And that’s what Drs. Miller and Bachrach and their colleagues
oVer in this book. They will help you understand cerebral palsy and how it
aVects your child. They will answer your questions. They will help you cope.
They will show you on every page that they understand, at least a little bit,
what it’s like to be the parent of a child with cerebral palsy. Perhaps most im-
portantly, they will do all this because they care so much about the children.
Whether you’ve just learned that your own precious child has cerebral
palsy, or whether you and your family have been living with this condition
for several years, you will Wnd that this book is a wonderful resource, as valu-
able to someone with an infant as to someone with a young adult. I still open
the pages and glance through it from time to time. I still learn from its mas-
ters, and it’s still a timely Wt. I urge you not to put it on your bookshelf, but
to keep it handy, and turn to it often. The information it provides will give
strength and hope and courage, to both you and your child.
I wish you luck and success in your journey.
Joan Lenett Whinston
Preface
♦ T H E I N F O R M A T I O N in these pages represents the current

thinking of professionals who specialize in the medical, psychological, edu-
cational, and legal aspects of caring for children who have cerebral palsy. The
book was written for everyone who provides the daily care of a child with
cerebral palsy, whether parent, grandparent, great-grandparent, brother, sis-
ter, aunt, or uncle. We hope that teachers, physicians, and anyone else who
cares about the well-being of such a child will also beneWt from it. Our goal
in writing this book is to help those who care for a child with cerebral palsy
understand the child’s needs and how these needs can best be met. In help-
ing the caregivers, of course, our ultimate goal is to help the child.
By learning about CP and the many options for treatment, parents and
others will be better prepared to ask direct questions of the professional,
who will probably respond by providing additional information or clariWca-
tion. Thus, one of our purposes in writing this book is to improve commu-
nication between the professional and the caregiver—again, resulting in bet-
ter treatment for and care of the child.
Cerebral Palsy: A Complete Guide for Caregiving is arranged in three parts.
The Wrst part is composed of chapters that address a range of issues, usually
progressing in sections by the chronological age of the child. You may want
to read this part of the book from beginning to end, or you may prefer to
turn to the speciWc section of this part of the book that addresses the issues
that are relevant for your child right now. For example, if your child is 5 years
old and has a hemiplegic pattern of involvement, you may want to begin by
reading the introduction to Chapter 5, plus the section of that chapter that
focuses on children with hemiplegia from age 4 to age 6.
The twelve chapters in Part 1 are arranged as follows: Chapter 1 provides
an overview of cerebral palsy, and Chapter 2 presents normal developmen-
tal milestones from a pediatric perspective, including a discussion of normal
and abnormal behavior. Chapters 3 and 4 describe medical problems and
intellectual and psychosocial issues associated with CP. SpeciWc patterns
of involvement are discussed in Chapters 5, 6, and 7. Although problems
encountered in childhood provide the primary focus of this book, one
x ♦ preface
chapter—Chapter 8—looks at issues confronted by the adult with CP. Chap-

ter 9 describes the medical system and introduces the various kinds of pro-
fessional caregivers you and your child may meet. In Chapter 10, health in-
surance and other Wnancial aspects of care are addressed. Finally, Chapters
11 and 12 explain how the educational and legal systems can beneWt your
child—and how you can make sure that they do.
Part 2 provides practical information for the caregiver. Subjects covered
range from wheelchair maintenance to daily hygiene tips such as tooth-
brushing, and entries are intended to help caregivers provide exceptional
care for children with cerebral palsy. We must add a word of caution here,
and that is that caregivers need to learn the techniques described in this sec-
tion from an experienced professional. The instructions in Part 2 are memory re-
freshers for those who have already been taught these caregiving techniques
by professionals.
Part 3 of the book is an encyclopedia, arranged in alphabetical order.
Listed, deWned, and described in this section are the medical terms and di-
agnoses and the medical and surgical procedures that are encountered by
families and others who provide care to children with cerebral palsy. Parents
can use this reference as a guide, and can consult it when new problems arise
or new treatments are being considered. Those caring for a child whose doc-
tor recommends that a pelvic osteotomy be performed, for example, can Wnd
out what this procedure involves, why and when it is recommended, and
what the preoperative and postoperative course will be like for the child.
The Resources section at the back of the book lists the names, addresses,
phone numbers, and web pages of organizations that provide professional
support for children with CP and their caregivers. Finally, additional infor-
mation about many of the topics in this book may be found in the books and
Web sites listed in the Recommended Reading section.
A Wnal thought before we begin: Each child is an individual, and no book

can provide information that applies speciWcally to an individual child at
any given time. We have written this book to provide information that ap-
plies generally to all children with CP, but speciWc information about your
child can only be obtained directly from a medical professional who knows
the child.
Acknowledgments
♦ A S W E N O T E D in the Wrst edition, a work of this scope depends

on the eVorts and contributions of many people. We thank the following
colleagues and health care professionals for their contributions to this new
edition:
Michael Alexander, M.D. Rochelle Glidden, Psy.D.

Benjamin Alouf, M.D. H. Theodore Harcke, M.D.
Ellen Arch, M.D. Douglas Huisenga, P.T., A.T.C.
Joan Blair, M.S.N., R.N., Heidi Kecskemethy, R.D., C.S.P.
A.P.R.N.-B.C. Maura McManus, M.D.
Millie Boettcher, M.S.N., C.P.N.P., Ralph Milner, M.D.
C.N.S.N. Robert O’Reilly, M.D.
Mary Bolton, P.T. Denise Peischl, B.S.B.M.E.
Winslow Borkowski, M.D. Joseph Queenan, M.D.
Aaron Chidekel, M.D. Mena Scavina, D.O.
Steven Cook, M.D. Ellen ScharV, M.S.W.
Maureen Edelson, M.D. David Sheslow, Ph.D.
Stephen Falchek, M.D. Susan Stine, M.D.
T. Ernesto Figueroa, M.D. Philip Wolfson, M.D.
Special thanks go to Josh Whinston, Bart Stevens, Ch.L.A.P., Diane Gal-

lagher, Ed.D., and Brian J. Hartman, Esq., for signiWcant contributions to
chapters 8, 10, 11, and 12 respectively. Special thanks also to Rochelle Sassler
for her major contribution of time and eVort with typing, editing, and co-
ordinating this project.
We acknowledge the major contributions of our fellow authors, who
helped write and edit major portions of this book. We also acknowledge the
support of our editors at the Johns Hopkins University Press, especially
Jacqueline Wehmueller, who has been with this project since the Wrst edition
was proposed.
We especially acknowledge our families for their patience and support as
we worked on this project.
xii ♦ acknowledgments
We also acknowledge the many patients and their families who have
helped us understand what they want to know about caring for their child
with cerebral palsy and have encouraged us to write this book.
Finally, we acknowledge the help and support of the Nemours Founda-
tion, the Nemours Children’s Clinic–Wilmington, and the Alfred I duPont
Hospital for Children, whose support was crucial to this second edition. We
especially acknowledge Roy Proujansky, M.D., Chief Executive of the Prac-
tice and J. Carlton Gartner, M.D., Chairman of the Pediatrics Department,
for giving Dr. Bachrach the time to work on this second edition. We must also
thank Dr. Bachrach’s colleagues in the Division of General Pediatrics who
helped care for his patients and covered his administrative duties while he
was away. These include Benjamin Alouf, M.D., Gary Frank, M.D., J. Carl-
ton Gartner, M.D., Sandra Hassink, M.D., J. JeVrey Malatack, M.D., Keith
Mann, M.D., Maureen McMahon, M.D., Amy Renwick, M.D., Joanne
Woodbridge, M.D., Kathleen Trzcinski, M.S.N., C.R.N.P., and Marilyn
Boos, R.N.C., M.S.
Steven J. Bachrach, M.D.
Contributors
Steven J. Bachrach, M.D., is Chief of the Division of General Pediatrics

and Co-Director of the Cerebral Palsy Program at the Alfred I. duPont Hos-
pital for Children, Wilmington, Delaware, and Clinical Professor of Pedi-
atrics at JeVerson Medical College, Philadelphia, Pennsylvania.
Marilyn L. Boos, R.N.C., M.S., is a pediatric clinical nurse specialist for
the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children,
Wilmington, Delaware.
Kirk Dabney, M.D., is Co-Director of the Cerebral Palsy Program, Depart-
ment of Orthopaedics, at the Alfred I. duPont Hospital for Children, Wil-
mington, Delaware; Assistant Professor of Orthopaedic Surgery at JeVerson
Medical College, Philadelphia, Pennsylvania; and Assistant Professor of
Orthopaedic Surgery at Georgetown University Medical School, Washing-
ton, DC.
Linda DuVy, B.S., P.A.-C., is staV physician’s assistant in the Cerebral Palsy
Program, Department of Orthopaedics, at the Alfred I. duPont Hospital for
Children, Wilmington, Delaware.
Robin C. Meyers, M.P.H., R.D., is a pediatric dietician at the Alfred I.
duPont Hospital for Children, Wilmington, Delaware.
Freeman Miller, M.D., is Co-Director of the Cerebral Palsy Program at the
Alfred I. duPont Hospital for Children, Wilmington, Delaware; Assistant
Professor of Orthopaedic Surgery at JeVerson Medical College, Philadel-
phia, Pennsylvania; and Adjunct Assistant Professor of Mechanical Engi-
neering at the University of Delaware.
Douglas T. Pearson, Ph.D., is a retired child psychologist. He is currently
involved in teaching and volunteering his expertise in inner-city day care centers.
Kathleen Trzcinski, R.N., M.S.N., C.R.N.P., is a nurse practitioner in
the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children,
Wilmington, Delaware.
xiv ♦ contributors
Rhonda S. Walter, M.D., is the Chief of the Division of Developmen-

tal Medicine at the Alfred I. duPont Hospital for Children, Wilmington,
Delaware.
Joan Lenett Whinston currently serves as the New Jersey State Represen-
tative of the Amputee Coalition of America. She also serves on the Camden
County Disabilities Board of Directors of New Jersey. She is the author of
Grandma Has One Leg and I’m Joshua and “Yes I Can,” which she wrote for
her son who has cerebral palsy.
1
Part One
Cerebral Palsy
Handbook
What Is
Cerebral
Palsy?
1 ♦ C E R E B R A L P A L S Y is a collection of motor disorders result-

ing from damage to the brain that occurs before, during, or after birth. The
damage to the child’s brain aVects the motor system, and as a result the child
has poor coordination, poor balance, or abnormal movement patterns—or
a combination of these characteristics.
Cerebral palsy (CP) is a static disorder of the brain, not a progressive dis-
order. This means that the disorder or disease process will not get worse as
time goes on. Nor are the motor disorders associated with cerebral palsy
temporary. Therefore, a child who has temporary motor problems, or who
has motor problems that get worse over time, does not have cerebral palsy.
Children with cerebral palsy may have many other kinds of problems, in-
cluding medical problems. Most of these problems are related to brain in-
jury. They include epilepsy, mental retardation, learning disabilities, and/or
attention deWcit–hyperactivity disorder.
Congenital cerebral palsy (or cerebral palsy that exists from birth) is re-
sponsible for the largest proportion of cases of cerebral palsy. For a small per-
centage of children, injuries sustained during the birthing process or in early
childhood may be considered the cause of cerebral palsy. When motor dis-
orders appear after age 5, they are slightly diVerent from the motor disorders
of cerebral palsy and are usually diagnosed as they would be in an adult, as
stroke or traumatic brain injury.
Cerebral palsy is one of the more common congenital problems: of every
2,000 infants born, 5 are born with cerebral palsy. This incidence had re-
mained constant for over 30 years, despite advances in obstetrical and pedi-
atric care, but began to rise slightly in the last years of the twentieth century
in the United States and other industrialized countries. Although improve-
ments in medical care have decreased the incidence of CP among some chil-
dren who otherwise would have developed the disorder, medical advances
have also resulted in the survival of children who previously would have died
at a young age, and many of these children survive with an impairment or a
disability such as cerebral palsy.
4 ♦ what is cerebral palsy?
What has also changed is the type of cerebral palsy that is most prevalent
in the developed Western world. In the 1960s in the United States 20 per-
cent of all children with cerebral palsy had athetoid cerebral palsy, a type of
CP caused by hyperbilirubinemia and characterized by slow, writhing invol-
untary movements. Today only 5 or 10 percent of children have this type of
CP, and 80 to 90 percent have spastic CP. The decrease is mainly due to ad-
vances in the treatment of hyperbilirubinemia. At the same time, spastic
cerebral palsy, characterized by rigidity in muscles, which causes stiVness and
restricted movement, has become more prevalent because intensive care for
newborns has resulted in higher survival rates for very small premature ba-
bies. These babies are at high risk of developing spastic cerebral palsy: be-
tween 5 and 8 percent of premature infants under 1,500 grams (3 lb. 5 oz.)
who survive have cerebral palsy.
What causes When cerebral palsy was Wrst described in the 1880s, it was believed to be
cerebral palsy? caused by lack of oxygen for the infant at birth. We now know that this is the
cause in only a small minority, approximately 10 percent, of children with
CP. The great majority of CP is caused by damage to the brain during fetal
development, well before the birth process begins. Although the cause of
this damage is usually not known (the medical term for “unknown cause” is
idiopathic), we know from modern imaging techniques (computerized to-
mography and magnetic resonance imaging) that some cases of CP are
caused by strokes or hemorrhaging in the brain in the late stages of fetal de-
velopment. Others are caused by abnormal development of the brain in the
early stages of fetal development (what is called a malformation or birth defect
of the brain). The brain damage that leads to CP can be caused by:
Idiopathic (no known cause of damage to brain during pregnancy)—still

the most common cause
A viral infection during pregnancy, such as cytomegalovirus (CMV) or
rubella
Hydrocephalus, either before or after birth
A blood clot in the fetus’s brain causing a stroke while in utero
Bleeding into the brain: While in utero, this could be due to a bleeding
disorder; after birth, this can be seen as a complication of extreme pre-
maturity.
Prolonged period of asphyxia (lack of oxygen) from, for example, abruptio
placenta, when the placenta tears away from the uterine wall during labor,
cutting oV the baby’s blood supply.
Bacterial meningitis after birth
Head trauma from shaken baby syndrome (child abuse) during the Wrst year
of life
Lead poisoning during the Wrst two years of life
what is cerebral palsy? ♦ 5
There is no way to predict which children’s brains will be damaged by one

of these factors, or what the extent of the damage will be. However, none of
these factors always results in brain damage, and even when brain damage
occurs, the damage does not always result in CP. Some children may have an
isolated hearing loss from their meningitis, others will have severe mental
retardation, and some will have CP (either alone, or with these other prob-
lems, too).
The most recent theory on the cause of idiopathic CP is that something
(possibly an infection in the amniotic Xuid that surrounds the fetus in the
womb) sets oV an inXammatory reaction in the brain of the fetus, and this
inXammation causes the brain damage resulting in CP. While not fully
proven, some experimental evidence supports this theory. This inXamma-
tion may also be the cause of premature labor in many cases, which may ex-
plain why CP and prematurity often occur in the same child.
What are the Cerebral palsy is classiWed by the type of movement problem (spastic,
diVerent types of athetoid, hypotonic, or mixed) and by the body parts involved (legs only,
cerebral palsy? one arm and one leg, or all four limbs). Motor ability and coordination vary
greatly from one child to another, and there are very few statements that
hold true for all children with cerebral palsy. Thus, generalizations about
children with cerebral palsy can only have meaning within the context of the
subgroups described below. That’s why subgroups are used in this book
whenever treatment and outcome expectations are discussed. Most profes-
sionals who care for children with cerebral palsy are familiar with these di-
agnoses and use them to communicate about a child’s condition.
Spasticity refers to the inability of a muscle to relax, while athetosis refers to
an inability to control the movement of a muscle. Infants who at Wrst are
hypotonic, or very Xoppy, may later develop spasticity. Hemiplegia is cerebral
palsy that involves one arm and one leg on the same side of the body,
whereas diplegia primarily involves both legs. Quadriplegia refers to a pat-
tern involving all four extremities as well as trunk and neck muscles. Gen-
erally a child with quadriplegia does not walk independently. Another fre-
quently used classiWcation is ataxia, which refers to balance and coordination
problems.
Although almost all children with cerebral palsy can be classiWed as hav-
ing hemiplegia, diplegia, or quadriplegia, there are signiWcant overlaps that
have led to the use of additional terms, some of which are confusing. Occa-
sionally you’ll encounter terms like paraplegia, double hemiplegia, triplegia,
and pentaplegia; these classiWcations are also based on the parts of the body
involved. For simplicity, however, most of the discussion of CP is limited to
the three broader categories.
The word for the dominant type of movement or muscle coordination
problem is often combined with the word for the component that seems to
be most problematic for the child. The result is a more speciWc descriptive
term. For example, the child with spastic diplegia has mostly spastic muscle
problems, and his legs are mainly aVected, although he may also have atheto-
sis and balance problems. The child with athetoid quadriplegia, on the other
hand, has involvement of both arms and legs, primarily with athetoid muscle
problems, but he or she often also has some ataxia and spasticity.
To summarize, we can classify diVerent kinds of cerebral palsy according
to the type of movement the child makes or to the part of the body that is
most involved, or both:
By type of movement
Spastic too much muscle tone
Athetoid no muscle control
Hypotonic decreased muscle tone (not enough tone)
Ataxic balance and coordination problems
Mixed mixture of two or more of the above
By involved body parts
Hemiplegia one arm and one leg on the same side of the body
Diplegia predominantly both legs (arms also involved)
Quadriplegia all four extremities
Other terms used to deWne speciWc problems of movement or muscle

function include dystonia, tremor, ballismus, and rigidity. The words severe,
moderate, and mild are also often used in combination with both anatomical
pattern and motor function classiWcation terms (severe spastic diplegia, for
example), but these qualifying words do not have any speciWc meaning.
They are subjective words, and their meaning varies depending upon the
person who is using them.
What are the Cerebral palsy is the term used to describe the motor impairment resulting
right words to use from brain damage in the young child, regardless of the cause of the damage
when referring to or its eVect on the child. Impairment is the correct term to use to deWne a de-
children with cere- viation from normal, such as not being able to make a muscle move or not
bral palsy? being able to control an unwanted movement. Disability is the term used to
deWne a restriction in the ability to perform a normal daily activity that some-
one of the same age is able to perform. (For example, a 3-year-old child who
is not able to walk has a disability because normal 3-year-olds can walk inde-
pendently.) Handicap is the term used to describe the condition of a child or
adult who, because of the disability, is unable to achieve a normal role in so-
ciety appropriate to his or her age and environment.
A 16-year-old who is unable to prepare his own lunch or brush his teeth
is handicapped. But a 16-year-old who walks with the assistance of crutches,
attends a regular school, and is fully independent in daily activities is dis-
abled, not handicapped. Thus, a person can be impaired and not necessarily
be disabled, and a person can be disabled without being handicapped.
Impaired means a deviation from normal;

Disabled denotes restricted ability to perform normal activities of daily liv-
ing; and
Handicapped means being unable to achieve an age-appropriate role in
society.
In the past there was a lack of awareness and sensitivity among the gen-
eral public with respect to the words used to describe people with disabili-
ties. Over the past years, however, an increasing amount of attention has
been paid to such language, and recently a great deal of attention has been
given to issues of education, employment, and public access for individuals
with disabilities. Because of this evolving awareness and respect, it is no
longer acceptable to refer to individuals by their disability (in other words,
as “the epileptic,” “the spastic,” or “the retarded child”). While it may take
years for a country’s language to catch up with society’s changing views, the
current acceptable terminology stresses the individual person and then men-
tions the disability that the person has: a girl with spastic diplegia, or a boy
with mental retardation. Clearly, this language acknowledges that there is
much more to a person than his or her disability. Other terms that have re-
cently come into use represent an even more enlightened view; for example,
some people may refer to a child as mentally challenged rather than mentally
retarded.
In this book, we have chosen to use respectful language that presents in-
formation in a way that can be understood by the general reader. Although
there may be newer, even better terms to use, we haven’t used them because
they often create confusion.
What medical The following list presents the medical problems most often associated with
problems will my cerebral palsy. These problems (and other, less common problems) are dis-
child encounter? cussed in detail in Chapter 3.
Neurological problems Orthopedic problems

Mental retardation Scoliosis
Learning disabilities Hip dislocation
Attention deWcit–hyperactivity Contractures of joints
disorder Discrepancy in leg length
Seizure disorder (epilepsy)
Visual impairment
Swallowing diYculties
Speech impairment (dysarthria)
Hearing loss
Secondary eVects
Communication disorder
Drooling
Poor nutrition
Depression
Fragile bones and frequent fractures
Cavities
Constipation
What are some Children with diVerent kinds of disabilities have many problems in com-
disorders that look mon, especially in interacting with family members and society. Although
like cerebral palsy the physical and medical diYculties of children with disabilities vary widely,
but are in fact a some of the characteristics of various disorders resemble those of cerebral
diVerent problem? palsy. It isn’t until after closer examination that the medical issues turn out
to be quite distinct.
Children with spinal cord dysfunction, for example, face medical prob-
lems such as a lack of feeling in their skin and lack of bowel and bladder con-
trol, which diVer markedly from the medical problems faced by children
with cerebral palsy. Spinal cord dysfunction may be a result of spinal cord in-
jury, spina biWda (a defect in the formation of the spinal column), or a con-
genital spinal cord malformation (a defect in the formation of the spinal
cord). Other children who may look similar to children with cerebral palsy
are children with temporary motor problems resulting from closed head in-
juries, seizures, drug overdoses, or some brain tumors. The medical issues
for this group of children are also diVerent from the medical issues for chil-
dren with cerebral palsy, because these injuries can occur at any age, and the
severity of the problems caused by these injuries changes over time.
Disorders that are primarily of muscle, nerve, and bone are not cerebral
palsy. Such conditions include muscular dystrophy, peripheral neuropathies
such as Charcot-Marie-Tooth disease, and osteogenesis imperfecta. All of
these conditions are associated with speciWc medical problems.
Children with progressive neurological disorders (including Rett syn-
drome, leukodystrophy, and Tay-Sachs disease) also have medical needs that
diVer from those of children with cerebral palsy. Some children with chro-
mosomal anomalies (for example, trisomy 13 and 18) or congenital disorders
(hereditary spastic paraplegia, for example) may appear similar to children
with cerebral palsy; others, such as children with Down syndrome, appear
very diVerent but may have some issues in common with children who have
cerebral palsy. They also have problems that are unique to children with that
speciWc disorder.
Can cerebral palsy When a physician diagnoses a baby with CP, the mother and father often feel
be prevented? guilty and wonder what they did to contribute to their child’s disorder. While
it is certainly true that good prenatal care is an essential part of preventing
congenital problems, these “birth defects” often occur even when the mother
has strictly followed her physician’s advice in caring for herself and the de-
veloping infant. Since the cause of most cases of CP is still not understood
(see page 4), prevention in most cases is not yet possible. However, when
there are speciWc known causes, the possibility of prevention exists.
Infections such as rubella (German measles), toxoplasmosis (a disease
caused by the invasion of parasitic microorganisms), and the virus known
as cytomegalovirus can cause brain damage in the fetus. Rubella can be pre-
vented by immunization (a woman should be immunized before becoming
pregnant), and the chances of becoming infected with toxoplasmosis can be
minimized by not handling the feces of cats and by avoiding raw or under-
cooked meat. There is no immunization for CMV. Bacterial meningitis can
cause severe brain damage in young infants after birth and is caused by a
number of diVerent bacteria. There is an immunization for some of these
bacteria, including haemophilus inXuenzae type B and some strains of pneu-
mococcus, which should prevent infection and thus protect the child from
meningitis due to these organisms.
Premature infants are at a much higher risk for developing cerebral palsy
than full-term babies, and the risk increases as the birthweight decreases. Be-
tween 5 and 8 percent of infants weighing less than 1,500 grams (3 lb. 5 oz.)
at birth develop cerebral palsy, and infants weighing less than 1,500 grams
are 25 times more likely to develop cerebral palsy than infants who are born
at full term weighing more than 2,500 grams (5 lb. 8 oz.). Many premature
infants suVer bleeding within the brain, called intraventricular hemorrhages,
or intracranial hemorrhages. Again, the highest frequency of hemorrhages is
found in babies with the lowest weight: the problem is rare in babies who
weigh more than 2,000 grams (4 lb. 6 oz.). This bleeding may damage the
part of the brain that controls motor function and thereby lead to cerebral
palsy. If the hemorrhages result in destruction of normal brain tissue (a con-
dition called periventricular leukomalacia) and the development of small cysts
around the ventricles and in the motor region of the brain, then the infant is
more likely to have CP than an infant with hemorrhages alone. While we do
not yet know the cause of premature labor, available treatments sometimes
succeed in stopping such labor, or at least delaying delivery of the infant for
a while. Prevention of early delivery, along with medicines to help mature
the lungs, may prevent some of the severe medical and neurological prob-
lems associated with premature birth.
What circum- In the nineteenth century, William John Little, M.D., described cerebral
stances in the palsy and stated that in most cases the condition was due to birth injury. Sig-
birthing process mund Freud, M.D., who was a prominent neurologist before he entered the
might cause a Weld of psychiatry, also investigated the causes of cerebral palsy. Dr. Freud
newborn to have thought that the condition was due to something that occurred before the
cerebral palsy? child’s birth. He argued that the problems seen at birth were often due to an
abnormality present in the baby before birth and were not caused by the
birthing process. Freud’s view was greatly ignored for nearly one hundred
years but recent research has lent support to the idea that cerebral palsy
is more often a result of a congenital abnormality than an injury sustained
at birth.
The birthing process can be traumatic for an infant, however, and injuries
occurring during birth do sometimes cause cerebral palsy. Modern prenatal
care and improved obstetrical care have signiWcantly reduced the incidence
of birth injury, but it is unlikely that it will ever be completely eliminated.
There are no speciWc events that, if they occur during pregnancy, delivery,
or infancy, always cause cerebral palsy. One large study, for example, indi-
cates that more than 60 percent of all pregnancies have at least one compli-
cation, and that most of these complications cause no problems. For in-
stance, 25 percent of all the newborns in the study had the umbilical cord
wrapped around their neck, and 16 percent passed meconium (had the Wrst
bowel movement) at the time of birth. Fortunately, these common “birth
events” and the development of CP have only a small correlation.
On the other hand, newborns in this study who had very low Apgar
scores for a prolonged period (less than 3 at 20 minutes) had a risk of devel-
oping cerebral palsy that was 250 times greater than infants with normal Ap-
gar scores. (An Apgar score is a system for assessing the condition of a new-
born baby by scoring respiration eVort, heart rate, color, muscle tone, and
motor reactions, usually at 1 and 5 minutes after birth.) An Apgar score of less
than 3 at 20 minutes after birth suggests that the infant suVered severe as-
phyxia during birth (asphyxia is a lack of suYcient oxygen to the brain). Half
of the infants who suVered severe asphyxia during birth did not develop cere-
bral palsy, however.
When CP is diagnosed in childhood, it is often found that the child
suVered asphyxia at birth. The asphyxia, however, is often considered the
symptom of an otherwise sick baby with a neurological problem, not the pri-
mary cause of CP. In a number of studies, only about 9 percent of children
with CP were thought to have CP directly and exclusively related to asphyxia
at delivery. Ninety-one percent of the babies had other inherent causes that
led to their brain damage, unrelated to their birth experience. This is ap-
parently why the incidence of CP in undeveloped and poverty-stricken
countries, where infant mortality is very high, is the same as in northern
Europe, where infant mortality is the lowest in the world. It may also ex-
plain why modern obstetrical care, including monitoring and a high rate of
cesarean section, has lowered infant mortality rates but not the incidence
What might cause of cerebral palsy.
a child between
birth and the age During infancy and early childhood, a child is completely dependent on oth-
of 2–3 years to ers for his or her safety and protection, and shielding a child from injury is
develop CP? one of the most important responsibilities of a child’s caregivers. An injury
like asphyxia damages the brain in a variety of ways, and it is the number one
cause of CP in this age group. Asphyxia is most commonly caused by poi-
soning, near-drowning, and choking on foreign objects such as toys and
pieces of food (including peanuts, popcorn, and hot dogs).
The brain may also be damaged when it is physically traumatized as a re-
sult of a blow to the head. A child who falls, is involved in a motor vehicle
accident, or is the victim of physical abuse may suVer irreparable injury to
the brain. One form of child abuse is the shaken baby syndrome, in which
the caretaker is trying to quiet the baby by shaking him but shakes him too
vigorously, causing the infant’s brain to strike repeatedly against the skull
under high pressure. This kind of abuse can damage the brain.
Severe infections, especially meningitis or encephalitis, can also lead to
brain damage in this age group. Meningitis is inXammation of the meninges
(the covering of the brain and the spinal cord), usually caused by a bacterial
infection. Encephalitis is brain inXammation that may be caused by bacter-
ial or viral infections. Either of these infections can cause disabilities ranging
from hearing loss to CP and severe retardation.
How does a physi- Many of a child’s normal developmental milestones, such as reaching for
cian diagnose toys (3 to 4 months), sitting (6 to 7 months), and walking (10 to 14 months),
cerebral palsy? are based on motor function. A physician may suspect cerebral palsy if a child
is slow to develop these skills. In making a diagnosis of cerebral palsy, the
physician takes into account the delay in developmental milestones as well
as physical warning signs such as abnormal muscle tone, abnormal move-
ments, and persistent infantile reXexes.
Making a deWnite diagnosis of cerebral palsy is not always easy, however,
especially before the child’s Wrst birthday. In fact, diagnosing cerebral palsy
usually involves a period of waiting for the deWnite and permanent appear-
ance of speciWc motor problems. Most children with cerebral palsy can be di-
agnosed by the age of 18 months, but this is a long time for parents to wait
for a diagnosis, and it is understandably a diYcult and trying period.
Making a diagnosis of cerebral palsy is also diYcult when, for example, a
2-year-old has suVered a head injury. The child may appear to be severely in-
jured in the period immediately after the trauma, and three months after the
injury he may have symptoms that are typical of a child with cerebral palsy.
But one year after the injury the child may be completely recovered, and it’s
clear that he doesn’t have cerebral palsy. Although he has a scar on his brain,
the scar is not permanently impairing his motor activities. During the year
between the injury and the diagnosis of no permanent injury, the parents will
have a diYcult time waiting. No matter how frustrating this period of wait-
ing and observing is, however, it must pass before the diagnosis can be made.
Do x-rays or other
tests help in the In making a diagnosis of cerebral palsy, the most meaningful aspect of the
diagnosis? examination is the physical evidence of abnormal motor function. A diag-
nosis of cerebral palsy cannot be made solely on the basis of an x-ray or a

blood test, though the physician may order such tests to exclude other neu-
rological diseases that could cause similar symptoms.
Blood tests and chromosome analysis are helpful in diagnosing heredi-
tary conditions that may be the cause of the abnormal motor function. It is
important to diagnose these conditions for the child’s sake, to understand the
cause of her problems and the possible prognosis. It is also important for the
family, because it may inXuence the parents’ decision to have more children.
When the tests indicate that a child’s condition is something other than cere-
bral palsy and that the condition is inherited, family members often beneWt
from genetic counseling. Cerebral palsy is not a hereditary condition, how-
ever, and a normal genetic test or normal chromosomes neither establish nor
rule out a diagnosis of CP.
Magnetic resonance imaging (MRI) or computerized tomography (CT)
scans are often ordered when the physician suspects that the child has cere-
bral palsy. These tests may provide evidence of a malformation of the brain
(such as lissencephaly), of an intrauterine stroke, periventricular leukomala-
cia (PVL), hydrocephalus, or a bleed into the brain.
Seeing these abnormalities on the MRI of a child who has abnormal tone
lends support to the possible diagnosis of CP, and sometimes may explain
the nature and timing of the brain injury. Sometimes, these scans show evi-
dence of a progressive neurological disease, which rules out a diagnosis of
CP. Sometimes the scan appears normal. A normal scan tells us that the
structure of the brain appears normal. However, the function of the brain
at the level of connections between nerves may still be abnormal, so a nor-
mal scan does not mean that the child has no problems. The physical exam-
ination and the child’s delay in development is the best indicator of neu-
rologic problems. These scans, even when abnormal, also cannot predict
how a speciWc child will function as he or she grows. Thus, children with
normal scans may have severe cerebral palsy, and children with clearly ab-
normal scans occasionally appear totally normal or have only mild physical
evidence of cerebral palsy. A child with an abnormal scan might appear nor-
mal until she begins school, for example, when signiWcant learning problems
may surface.
As a group, children with cerebral palsy do have brain scars, cysts, and
other changes that show up on scans more frequently than in children with-
out cerebral palsy. Therefore, when an abnormality is seen on a CT scan of
the brain of a child whose physical examination suggests he may have cere-
bral palsy, it is one more indication that the child is likely to have motor
My infant has just problems in the future.
been diagnosed
with cerebral palsy. The Wrst questions usually asked by parents after they are told their child has
What can I expect cerebral palsy are, “What will my child be like?” and “Will she walk?” Pre-
for her future? dicting what a young child with cerebral palsy will be like or what he or she
will or will not do (this prediction is called the prognosis) is very diYcult. Any
predictions for an infant under 6 months of age are little better than guesses,
and even for children younger than 1 year it is often diYcult to predict the
severity of CP. By the time the child is 2 years old, however, a qualiWed physi-
cian can determine whether the child has hemiplegia, diplegia, or quadri-
plegia. Based on this involvement pattern, some predictions can be made.
Remember, children with cerebral palsy do not stop activities once they
have begun them. Such a loss of skills, called regression, is not characteristic
of this disorder. If regression does occur, a diVerent explanation for the
child’s problems should be sought.
For a child to be able to walk, some major events in motor control have
to occur. A child must be able to hold up his head before he can sit up on his
own, and he must be able to sit independently before he can walk on his
own. It is generally assumed that if a child is not sitting up by himself by age
4 or walking by age 8, he will never be an independent walker. But a child
who starts to walk at age 3 will certainly continue to walk and will be walk-
ing for the rest of his life.
It is even more diYcult to make early predictions of speaking ability or
mental ability than it is to predict motor function. Here, too, evaluation is
much more reliable after age 2, although a motor disability can make the
evaluation of intellectual function quite diYcult. Sometimes “motor-free”
tests, which can assess intellectual ability without the child using his hands,
are administered by psychologists who are experts in this type of testing.
Overall, a child’s intellectual ability, far more than his physical disability, will
determine the prognosis. In other words, mental retardation is far more
likely to impair a child’s ability to function in the world than is cerebral palsy.
What can my doc- As a parent, you’re naturally concerned when your newborn has problems.
tor tell me about Although your child’s physician needs to evaluate your child’s condition and
my newborn’s prognosis and discuss this with you, the outcome cannot be predicted. Re-
neurological member, although an increased risk of CP can sometimes be identiWed at
problems? birth, an actual diagnosis of cerebral palsy cannot be made at birth, and cer-
tainly the extent and severity of involvement that an individual child might
eventually have is impossible to assess at birth.
Some neonatologists (doctors who specialize in the care of newborn in-
fants) may avoid discussing the infant’s problems in detail with the parents.
They do this because they are aware of the normal interaction and bonding
that occurs between the newborn and parents, and they don’t want to do
anything to interfere with that healthy interaction. The presumption of a
bleak future for a child sometimes causes parents to withdraw from the
child, and this can have a signiWcant negative eVect on the child.
Physicians usually communicate their concerns in terms of the child’s
symptoms, such as muscle problems, and prepare parents for the possibility
of neurological damage. Clearly, it is part of the physician’s role to inform
parents, but the variability of outcome makes it virtually impossible for the
physician to predict the future, and so the physician must weigh the need to
inform (and the imprecision of the information that is available) against the
need for the parents to have hope for, and become close to, their child.
Given all these Many times when a child is 2 or 3 years old and has a severe disability, par-
uncertainties, ents begin to wonder whether treatment should have been less aggressive
what kind of med- during those Wrst few years. Given the tremendous uncertainties in out-
ical treatment come, physicians and parents often choose to treat newborns and preserve
should a sick new- life with the hope that the outcome will be a good one. There are clearly ex-
born receive? ceptions, such as when the baby has a known chromosomal defect (such as
trisomy 18), where a poor prognosis is known and very aggressive treatment
may be futile. However, in the majority of cases, neither the doctor nor the
parents know what the outcome will be, and they must do the best they can
with the limited information they have.
Often the prognosis is based on information from studies of a large num-
ber of babies with similar birthweights. The chance of an individual baby
having cerebral palsy or mental retardation (expressed as a percentage) is de-
rived from these studies. Nevertheless, it is impossible to know whether an
individual infant will Wt into the 70 to 90 percent group that has a good out-
come or the 10 to 30 percent group with a poor outcome.
The role of the physician is to gather as much information about the
child’s condition as possible and to convey this information to families,
along with the best information available about chances of outcome. The
role of the family is to help in the decision-making process, especially when
decisions must be made about further aggressive treatment. Ultimately,
treatment decisions are medical ones, but they should be made with input
from the family. The relationship between physician, patient, and family
should be one of mutual respect, where each member of the “team” is work-
ing toward the patient’s common good. Only with an open exchange of in-
formation and communication is this possible.
The problem is trying to Wgure out what is best for the child. At the time
the decisions must be made it is often very diYcult to know what will ulti-
mately be best. A decision to treat aggressively usually involves the use of so-
phisticated equipment, although the availability of such technology does
not mean that it must always be used, and there are clearly times when it is
more humane to withhold or withdraw aggressive treatment. These are never
easy decisions to make. Clergy, social workers, ethicists, and other health
care workers who have come to know the patient and family often help in
making decisions.
As parents reXect back over previous treatments, they should remember
all these uncertainties and focus on the fact that decisions were made based
on the best information available at the time. Focusing on decisions that in
hindsight are thought to have been wrong is not beneWcial to anyone. Sim-
ilarly, the treatment plan should be a Xexible one, and parents and medical
specialists should not be afraid to alter the course as new information be-
comes available.
As parents, how When it comes to expectations and questions of what the future holds for the
can we work with child with CP, a combination of optimism and realism is probably your best
doctors to set real- bet. Consider that the parents of a 3-year-old without a disability who hope
istic goals for our and expect that the child will go to college and law school, enter politics, and
child? eventually become president of the United States have a vision for their child
that combines realism and fantasy. Rather than map out a child’s career path
in this way, it would be far better for parents to care for the child as a 3-year-
old—not as a college student or as a budding politician. It is equally impor-
tant for the parent of a child with a disability to understand the child’s pres-
ent and future abilities, and to develop a set of realistic goals to live by.
Occasionally diYculties in communication arise when parents, educa-
tors, and medical care providers discuss the child’s present abilities. It’s often
a challenge to improve communication so that everyone involved in the
decision-making process is heard. People who are involved in making diY-
cult decisions in an emotionally charged atmosphere must know that they
will have a chance to express their opinions regarding the child’s treatment,
and that these opinions will be taken seriously. Parents know their child best,
but their judgment may be clouded by fantasy; physicians need to help par-
ents develop realistic goals without quashing their hope. Sometimes parents
don’t have high enough expectations for their child, and in this case doctors
need to provide encouragement to the parents to help them help their child
achieve everything that he or she is able to.
An attempt to deWne future expectations is usually most important in the
teenage years and beyond, when function is better deWned and the future
looks clearer to everyone involved. However, if everyone keeps their sights
set on the primary goal—helping the child function at his or her maximum
ability—then a team spirit is often a natural result.
The next chapter describes the general patterns of “normal” pediatric devel-
opment. These patterns provide a basis of comparison for parents whose
child has problems associated with cerebral palsy. By comparing their own
child’s development with that of the child whose development is proceeding
as expected, parents whose child has CP can sometimes be comforted by
seeing that their child is developing along certain avenues just as he or she is
expected to do. If, on the other hand, the child is experiencing developmen-
tal delays, parents can bring the problems to the attention of their child’s
physician, who can then work with the parents to determine the best course
of action.
An
Overview
of Early
Child
2
Development
♦ W H E N W E T A L K about the changes that an individual goes

through while maturing from infancy into being a toddler, a child, an ado-
lescent, and, Wnally, an adult, we sometimes use the words growth and devel-
opment. When we use the word growth, we are referring to an increase in
physical size, but when we talk about development, we mean an increase in
control over body movements. In this chapter, we will be focusing on this
second aspect of the maturation process.
A newborn infant responds primarily in an involuntary, or reXexive, way
to his or her environment, but over the next few years a combination of
physical growth and learning experiences will enable the child to participate
actively in the world. The child will learn to run, talk, and think creatively,
and this development will occur step by step, in a sequential fashion.
Many parents have their own ideas about “normal development”—that
is, what a “normal” child should do at any given age. This perception is based
on common family experiences, on what the parents have read in parenting
books, and on the advice they have received from pediatricians and other
professionals. While most books caution parents about comparing their
child’s development with the “norms,” it is only natural for parents to con-
sider their child as either advanced or delayed in comparison to their per-
ception of “normal.”
It’s important to keep in mind that each baby develops in his or her own
way. Although there is a sequential unfolding of developmental milestones,
most parents, educators, and professionals who spend time around children
know that diVerent children develop at diVerent rates. These developmental
diVerences may be due to an inborn “inner nature” that is inXuenced by the
environment in which the child grows. Clearly, however, there are some
children whose development is delayed to the point where the parents begin
to worry, and some children’s development diVers from the range of norms
in a way that interferes with an orderly acquisition of skills.
The growth and development of infants born with disabilities or chronic
or life-threatening illnesses may be erratic, showing normal patterns of de-
velopment in some areas but not in others. It is at these points of perceived
18 ♦ a n o v e r v i e w o f e a r ly c h i l d d e v e l o p m e n t
delay that parents need to become concerned, seek professional advice, in-
vestigate the problem, and, if necessary, obtain remedial help for the child.
While their infant is maturing, it’s worthwhile for parents to keep in mind
some general principles of development. In this way, they are more likely to
recognize when their child may need some help.
First, parents need to view development as a continuous process, from
conception to maturity, rather than as a series of milestones. Before such
markers are reached, a child proceeds through many stages of development,
and as a parent you need to observe not only what a child does, but how he
does it. It is important to know that development depends on the matura-
tion of the nervous system. Until that has occurred, no amount of practice
or coaching can make a child learn a skill that his brain is not yet capable of
directing.
While the sequence of development is the same for all children, the rate of
development varies from child to child. For example, a child learns to sit be-
fore he walks, but the age at which diVerent children learn to sit and walk
varies considerably. Certain so-called primitive reXexes need to be lost be-
fore voluntary movement can develop. (In children with severe motor dis-
abilities, these primitive reXexes are likely to persist beyond the usual age
and may, in fact, impede normal development.)
Finally, the direction of development is cephalocaudal—that is, from head
to toe. The child must be able to control his head before he can control the
spinal muscles; ultimately he will gain control of the extremities as he pro-
gresses through the developmental stages and begins walking.
Remember that developmental “norms” are not absolutes. Your child
may gain individual skills earlier or later than other children. In children
with cerebral palsy, neurological problems accompany the primary motor
disability. In fact, many of the problems associated with CP (such as mental
retardation, communication or learning disorders, disturbances of hear-
ing or vision, emotional problems, seizures, and orthopedic complications)
have a greater eVect on development than the primary motor dysfunction
does. This does not mean to imply that each and every child who is given the
diagnosis of cerebral palsy is going to experience diYculties in all areas of de-
velopment. Nor does it mean that your child, or any child with CP, will ex-
perience any or all of the associated dysfunctions. But as a parent, you need
to educate yourself about delays in development and potential diYculties in
various parts of the body, and be ready to investigate if you become con-
cerned. This chapter will help you do that.
What specific skills Early child development involves gaining mastery of four major types of
do children gener- skills: gross motor, Wne motor, communication, and social. Development in
ally master dur- these areas occurs simultaneously to prepare the child to meet physical, so-
ing development? cial, linguistic, and emotional demands. Gross motor skills such as postur-
a n o v e r v i e w o f e a r ly c h i l d d e v e l o p m e n t ♦ 19
Table 1 Overview of Developmental Milestones

Age Gross Motor Visual/Fine Motor Language Social
1 month Prone, lifts Hands usually Soothes to voice Regards face
head Wsted; stares at
objects
3 months Supports chest Grasps placed Coos/laughs Smiles easily,

in prone position rattle; follows spontaneously
slow-moving
objects with
eyes
6 months Rolls and sits Reaches and Babbles; plays Fear of

well, without grasps, transfers peek-a-boo strangers;
support hand to hand smiles at self
in mirror
12 months Walks alone Pincer grasp of Says “mama,” Shy, but plays
raisin “dada,” + 2 game, gives
other words aVection
18 months Walks up steps Stacks 3 blocks; Points to named Helps with

manages spoon body parts; simple tasks;
follows simple imitates play
command
24 months Alternates feet Stacks 6 cubes; At least 50-word Washes/dries

on stairs; kicks turns book vocabulary; hands; helps
ball pages understands get dressed
2-step commands
30 months Jumps with Holds pencil in Uses pronouns Plays tag;

both feet hand, not Wst “I,” “you,” “me” asserts
correctly; states personality
full name
36 months Balances on 1 Imitates block Recognizes 3 Plays with

foot, 5 sec.; bridge; buttons colors children,
rides tricycle takes turns
Note: It is not uncommon for a child to lag behind in one area and be advanced in another. However,
there are generally accepted limits for what is considered “normal development.”
Source: Adapted from The Harriet Lane Handbook, 17th ed. (Philadelphia, Elsevier Mosby, 2005).
ing, locomotion, and coordination require the use of large muscles to sit,
crawl, stand, walk, and run, as well as other activities (table 1).
Fine motor or adaptive skills include manipulative skills, such as those
used for feeding and dressing, skills that are necessary to interact eVectively
with the environment. Fine motor activities involve the use of small muscles
in the Wngers and hands, in tasks such as picking up small objects.
Communication skills are the capacities needed to understand others and
express oneself. Communication skills are both verbal and nonverbal and are
used in understanding both simple and complex instructions. This area en-
compasses the development of receptive language—the ability to receive
and process information, and understand its meaning. Communication also
Table 2 Developmental Red Flags

Concern if Not
Milestone “Normal” Acquired By
gross motor
Head up/chest oV in prone position 2 months 3 months
Rolls front to back, back to front 4–5 months 6–8 months
Sits well unsupported 6 months 8–10 months
Creeps, crawls, cruises 9 months 12 months
Walks alone 12 months 15–18 months
Runs; throws toy, from standing
without fall 18 months 21–24 months
Walks up and down steps 24 months 2–3 years
Alternates feet on stairs; pedals
tricycle 3 years 31⁄2–4 years
Hops, skips; alternates feet going
down stairs 4 years 5 years
fine motor
UnWsts hands, touches object in
front of them 3 months 4 months
Moves arms in unison to grasp 4–5 months 6 months
Reaches either hand, transfers 6 months 6–8 months
Pokes foreWnger; pincer grasp;
Wnger feeds; holds bottle 9 months 1 year
Throws objects, voluntary release;
mature pincer grasp 12 months 15 months
Scribbles in imitation; holds utensil 15 months 18 months
Feeds self with spoon; stacks 3
cubes 18 months 21–24 months
Turns pages in books; is steady cup
drinker; removes shoes and socks 24 months 30 months
Unbuttons; has adult pencil grasp 30 months 3 years
Draws a circle 36 months 4 years
Buttons clothes; catches a ball 4 years 5 years
Continued on next page
includes expressive language—the ability to transmit information. Social

skills are the skills required to interact with other individuals.
What are some SigniWcant delays in early child development are “red Xags” that should
signs of develop- prompt parents to discuss their concerns with the child’s doctors (table 2).
mental problems? SigniWcant delays in gross motor development include the inability to hold
the head up securely by about age 3 months, to sit independently when
placed in a sitting position by 10 months, or to walk independently by 18
months. Warning signs of Wne motor problems include the inability to bring
hands to midline (to center the hands in front of the body) or objects to the
mouth by 6 months. A child who persistently keeps her hands Wsted should
also be checked. Babies generally pass out of the hand-clenching stage by 3
to 4 months of age. Persistence of this posture will interfere with both Wne
and gross motor development, and any child who is consistently keeping her
hands clenched should be investigated for underlying abnormal neurologi-
cal tonal imbalance.
Table 2—Continued
Concern if Not
Milestone “Normal” Acquired By
language
Smiles socially after being talked to 6 weeks 3 months
Coos 3 months 5–6 months
Orients to voice 4 months 6 months
Babbles 6 months 8 months
Waves bye-bye; says “dada,”
“mama” indiscriminately 8–9 months 12 months
1–2 words other than dada/mama;
follows 1-step command with
gesture 12 months 15 months
7–20 words; knows 1 body part;
uses mature jargoning 18 months 21–24 months
2-word combinations; 20 words;
points to 3 body parts 21 months 24 months
50 words; 2-word sentences;
pronouns (inappropriate);
understands 2-step commands 24 months 30 months
3-word sentences; plurals;
minimum 250 words 36 months 31⁄2–4 years
Knows colors; asks questions;
multiple-word sentences (tells
story) 4 years 5 years
social
Regards face 1 month 1–2 months
Recognizes parents 2 months 2–3 months
Enjoys viewing surroundings 4 months 5–6 months
Recognizes strangers 6 months 7–8 months
Reciprocal games: so big, pat-a-cake 9 months 12 months
Delays that are a cause of concern in language development include

lack of babbling, making raspberries, or cooing by 8 months, no intelligible
words by 15 months, and no two-word distinct combinations by 2 years. Any
child with these types of language delays should be investigated for prob-
lems with hearing. In addition, a young infant who is not easily startled at
loud sounds, a 6-month-old who does not turn toward a voice, or a 1-year-
old who does not appear to respond to her name when called requires a hear-
ing evaluation. Questions or concerns about an infant’s vision should be
raised if by approximately 3 months of age the infant does not focus on a per-
son’s face or follow moving objects or people with his or her eyes. If a child
has random eye movements (nystagmus), the parents should call the child’s
pediatrician.
“Red Xag” concerns about social and emotional development are often
more diYcult to identify than physical ones because there are wide variations
in cultural, ethnic, and familial expectations about a child’s emotional makeup
and temperament. However, we can say that if an infant by several months
of age does not smile when talked to by family or friends, that infant ought
to be examined. The same thing applies to an infant who in the Wrst six
months of life appears to stiVen when held, or is extraordinarily “unhug-

gable.” Such a child is distinctly diVerent from a motor-impaired child with
tonal abnormalities; the latter is physically unable to hug, whereas the for-
mer is capable of reciprocating a hug or an endearing gesture but appears to-
tally uninterested in doing so. Children generally enjoy making eye contact
with parents and others they are comfortable with. A child at any stage of de-
velopment after the Wrst several months of infancy who cannot make or who
actually appears to avoid making eye contact with familiar people should be
examined for a potential social or emotional problem.
Concerns about developmental delays should be discussed with your
child’s physician. Depending on your child’s age and other factors, several
options are available, from a full neurodevelopmental evaluation to a watch-
and-wait-and-see approach. Often your doctor can reassure you that your
child’s progress is within the range of normal development.
Birth to One Year

The Wrst year of life is Wlled with advances in all aspects of development.
Parents expect their baby to progress on to walking (or close to it), talking
(one or more words), and semi-independence in feeding skills (introduction
of cup, holding of spoon). For many parents of children ultimately diag-
nosed as having cerebral palsy, the Wrst year of life may be the beginning of
their realization that their own child’s development “is not quite right.” They
notice that their child’s progress is not exactly what their parents, friends, ex-
periences with other children, or consultation with baby books predict.
What follows is a discussion of the Wrst-year milestones, based on norms
of child development. We do not mean to imply that your child’s develop-
ment should adhere to these norms. Remember, each child develops at his
or her own rate, all the while following a sequential pattern. There is a wide
range of “normal,” from the very precocious child who rolls over, sits up,
crawls, and walks and talks at a much younger age than the average, to the
child who does all of these things later than most other children do.
The following discussion should be used as a guide, then, for becoming
aware of patterns of development. These discussions may alert you to a
problem in your child’s overall development or to a problem in one of the
areas of development, at which point you may want to discuss the problem
with your child’s physician. What follows may also enhance your knowledge
of what your child may be capable of at a given stage, thereby helping to
guide your interaction and play time with your child.
During the Wrst 4 weeks of life (the neonatal period), the infant’s large
and Wne motor movements are primarily reXexive. That is, they are con-
trolled by persistence of automatic responses to situations and stimuli. The
newborn baby lies primarily in a Xex position (the so-called fetal position),
keeps his hands in tight Wsts, and has little head control when held in a sit-
ting position. Lying on his stomach, a newborn may be able to turn his head
from side to side, and during the Wrst four weeks will begin to be able to lift
his head brieXy.
Newborn infants can brieXy Wx their eyes on an object in their line of vi-
sion (that is, an object held in the direction their eyes are facing). They focus
best on objects that are about 8 to 14 inches away. It is not unusual for a new-
born to sleep for about 75 percent of a 24-hour day. Newborns go through
several states of arousal, including lying quietly, being intensely active, and
crying—seemingly inconsolably—for what seems to be long periods of time.
Infants can require as many as eight feedings a day, or an average of one feed-
ing every three hours (but rarely is a newborn’s feeding schedule so pre-
dictable, as any mother will tell you). Babies often don’t seem to react much
to noises when they are “sleeping right through things,” but in fact most ba-
bies will react to loud noises by acting startled, or by changing their “arousal
state.” While it is diYcult to describe a newborn infant’s social or emotional
development, it does seem that infants respond to human voices more than
to other noises. And most newborns soon begin to show visual preference
for a human face.
By the second month, or between 4 and 8 weeks of age, infants become
more socially interactive. By approximately 6 weeks the so-called social smile
emerges. Generally by the eighth week of life an infant will return a person’s
gaze and give the appearance of smiling or even of giggling. There are also
signiWcant developments in gross and Wne motor skills. SpeciWcally, when
placed on her stomach, an infant of between 4 and 8 weeks of age can begin
to lift her chin oV a Xat surface so that her face is at a 45-degree angle from
the Xat surface. When the infant is pulled to a sitting position from lying
down, the infant’s head does not lag quite as much as it did in early infancy.
The hands generally are still persistently Wsted, but infants may begin to
study their own hand movements (often looking quite “serious” while do-
ing this). Eyes that previously wandered and occasionally crossed may ap-
pear to focus and in fact begin to follow an object brieXy in a limited range.
Children between 4 and 8 weeks may be able to express distress or de-
light, and be soothed by a familiar person’s touch. Some children by 8 weeks
will in fact appear to listen to voices and actually to coo in response (most
specialists call this “pre-cooing,” to distinguish it from the various pitched
squeals that older infants make).
At 3 months, or around 12 weeks, the infant may produce a series of gur-
gling and cooing sounds. The baby’s Wngers usually begin to relax, and Wst-
ing is no longer commonplace. A 3-month-old generally can make sustained
social contact in the sense of smiling easily and spontaneously, and barring
any visual problem, an infant of this age can follow slow-moving objects.
Some infants may in fact begin to recognize and diVerentiate family mem-
bers from strangers. There is much greater head control as the infant is
pulled up from a lying to a sitting position.
Placed on her stomach, a 3-month-old can lift her head and chest with her
arms extended. Infants at this stage may begin to swing at or reach toward
(and miss) objects. There is a general diminishment of the so-called primi-
tive reXexes, and the infant may actually make defensive movements or se-
lective withdrawal reactions. By the end of the third month, the infant’s
suck-and-swallow feeding from either bottle or breast is coordinated to the
point of seeming eVortless. Those who choke, gag, cough, and sputter, or
who do not appear to have mastered their breathing and eating patterns
or who persist in making seemingly odd, high-pitched, or guttural sounds
while eating, should be seen by a physician.
Somewhere near 4 months of age, infants begin to roll (front to back,
back to front). A 4-month-old will react to sound and may turn to a famil-
iar voice: the infant in the crib hears her mother’s voice, for example, and
turns in her direction before she comes into sight. The infant’s ability to
follow movement visually in all directions should be more accurate and
active.
By 6 months the infant’s language has developed from pre-coo to coo-
ing, and then to continuous vowel sounds. True babbling emerges (vowel-
consonant combinations expressed repetitively, such as “ma-ma-ma-ma-
ma”). The 6-month-old may truly begin to show fear of strangers and appear
shy. In addition, a personality emerges, as the baby begins to show likes and
dislikes for certain positions, sounds, and foods (by now most children will
have added cereals and various purees to bottle or breast).
By 7 months, most infants can bear some weight on their legs when held
upright, should be able to sit without support, and may even be able to pull
to standing from sitting as well as get into a sitting position from the stom-
ach. At this age, a child may try to grab a toy that is placed out of reach, hold
a block or rattle in one hand, and rake up small objects such as raisins with
his Wst. An infant between 7 and 8 months is able to grasp objects with his
thumb and foreWnger, and is able to “isolate his foreWnger,” meaning that he
can poke at objects with his index Wnger.
The infant may begin to crawl at this age, as she pulls herself forward with
her hands and slithers on her belly, pulls up on her knees to crawl, or moves
forward in some modiWed style, often called “commando crawling” (since it
imitates the movement of a soldier crawling on his arms in a crouched posi-
tion). By 9 months the infant begins to play games such as patty-cake or wav-
ing bye-bye.
An infant between 7 and 8 months of age should deWnitely be able to turn
in the direction of a loved one’s voice and may begin to respond to the sound
of her own name. Language continues to be a progression of repetitive
consonant-vowel sounds, and distinct “mamas” and “dadas” begin to be
heard, although not necessarily referring to the child’s mother or father. By
the end of 8 months, most children look for a dropped object by playing
“over-the-edge,” and many infants of this age begin throwing things oV the
highchair. An infant between 7 and 8 months of age may truly begin to de-
velop “stranger anxiety,” although this aversion to strangers may in fact have
been surfacing for several months.
By 10 months an infant’s gross motor development should include
crawling backward and forward using reciprocal movements; assuming the
sitting position and sitting with the back straight; and pulling to stand.
There are certainly 10-month-olds who can stand with or without support,
and there are children who by the end of the tenth month stand with little
support. Infants at this age also tend to explore in a poking fashion, begin-
ning to master what developmental specialists call the “pincer grasp”: the
thumb and index Wnger meet in a way that allows signiWcant control of
an object.
At 10 months, infants are interested in Wtting things together, and some
may enjoy splashing in water and messing up their food. Searching for hid-
den objects, enjoying peek-a-boo and patty-cake games, and inviting a par-
ent or other friendly person to play are all characteristic of a 10-month-old.
The baby’s language continues to progress, perhaps to the point where the
baby can say “dada” or “mama” discriminately and understand the word
“no” (although she may choose not to obey it).
By the end of the Wrst year of life most infants can stand alone, and most
take a step or two without holding on to anything for support. Many 1-year-
olds walk in some combination of standing, “cruising” along furniture, and
taking independent steps. Reaching becomes much more accurate as a child
searches for objects that are farther away. Objects held in the two hands can
be brought together purposely (banging cymbals, for example), and the in-
fant can purposefully release an object from his grasp.
At age 1 the infant begins to distinguish himself as separate from others
(matching objects that are his), seek approval and avoid disapproval, and
most likely understand the meaning of “no” more fully. Some 12-month-
olds also cooperate in dressing and understand a one-step command when
it is accompanied by a gesture such as “Give me that toy.” Spoken language
at a year is highly variable, and may include “mama” and “dada” as well as
one or two other single words. One-year-olds freely show aVection and also
show attachment to favorite objects such as stuVed animals or blankets.
How may the Developmental delays are anticipated for the child with CP, and these are
development of a perhaps most easily recognized when the child does not reach milestones
child with cerebral when expected. The child with cerebral palsy most often does not accom-
palsy diVer from plish gross motor tasks at the same rate as the child without CP, for example.
this? DiVerences in the pattern of movement may be seen as well. Due to in-
creased tone, or spasticity, some children with CP may not be able to fully
separate the movement of their heads from the movement of the rest of their
bodies, making their limbs feel and look stiV when they are rolling, at-
tempting to sit, or trying to walk. The child who is “Xoppy” or who has low
tone may not be able to generate the forces necessary to hold his head up or
roll in a smooth pattern. This child may slump when seated or placed to sit
and may buckle or collapse at the knees when attempting to stand.
In terms of Wne motor skills, small muscles in the hand that are used to
manipulate objects are often aVected by tone imbalances in children with
cerebral palsy. In children with spasticity, or increased tone, impairment may
begin at the shoulder, with the inability to extend the arm to reach for an ob-
ject. The hand itself may be less controlled in Wne regulation of movement,
making it diYcult for the child to reach and grasp. In children with an athetoid
component, the “Wne tuning” required to coordinate reaching, grasping,
and releasing may be missing.
The child with a known or emerging hemiplegic pattern may prefer to use
one hand over the other. Parents may think that their child is a “lefty” when
in fact the function of the child’s right hand is aVected by the cerebral palsy.
Hand preference usually doesn’t emerge until about 18 months, so if your
child does not use both hands equally when he or she is younger than 18
months, you should mention this to your child’s doctor.
Language development and problem-solving abilities are not necessarily
aVected in the young child with cerebral palsy, although language delay
and mental retardation do sometimes accompany cerebral palsy. You need to
be aware of normal milestones and bring to the doctor’s attention any be-
havior that is signiWcantly behind what you perceive to be normal for a child
of this age.
Many children with cerebral palsy are active and very social in the Wrst
years of life. A child with physical limitations, just like other children, seeks
and needs verbal and physical aVection in order for his personality and iden-
tity to develop. Visually impaired children, for example, often need more
touching and verbal feedback than other children, since they can’t rely on
their sight to pick up a parent’s soothing expressions.
You may Wnd, however, that your child is less “huggable” and cannot
return your embraces, but you shouldn’t necessarily view this as your
child’s choice. A very small percentage of children with cerebral palsy exhibit
autistic-like tendencies in the Wrst year of life. These children appear to be in
a “world of their own,” neither seeking nor returning aVection, eye contact,
or social contact. This behavior should be brought to the attention of the
child’s physician, and counseling may be initiated to help stimulate the
parent-child interaction.
Ages One to Three

The child entering his or her second year truly becomes a toddler, with
signiWcant strides made in the area of locomotion—getting around, walk-
ing, and “getting into everything.” Over the next several years, the child be-
gins to develop a sense of self-mastery and tries to understand her “Wt” in the
world around her, composed of parents, siblings, and perhaps an emerging

peer group.
Many parents describe the period between 12 and 15 months as one of the
most pleasurable in the raising of their children. Language is beginning to
emerge, a sense of curiosity is exploding, and the physical ability to get
around has developed to the point where the child is truly exploring his en-
vironment. By 15 months, most children are walking without support (al-
though they may hold their arms up, in a high position) and are beginning
to creep upstairs (and therefore need to be watched carefully). Fine motor
skill increases as an infant is able to solve simple games, successfully nest, or
stack, objects inside each other, and grasp a crayon with enough coordina-
tion to make a mark on a piece of paper.
While the child may make known the vast majority of her needs by point-
ing and gesturing, many children 15 to 16 months old have a spoken vocab-
ulary of four to six words. Often, parents describe gibberish that actually has
the rhythm and Xow of speech, but with very few intelligible words. A 15-
month-old can follow simple commands and should have a clear under-
standing of the concept “no.” Socially the infant is much more available: he
often hugs his parents spontaneously and reciprocates aVection, either by
blowing kisses or by responding to commands such as “give mommy a hug.”
Hiding objects and throwing them continue to be a favorite pastime as the
child develops a sense of diVerence between an inanimate object and him-
self. The child also understands the concept of retrieving an object—al-
though often it is the parent, not the child, who retrieves it.
The parent-child interactions that emerge at 15 months continue to de-
velop as the child reaches 18 months of age, including hugging and recipro-
cal aVection involving parents, siblings, and inanimate objects (the child
begins to lug around her favorite doll or other toy). Children are also now
more capable of feeding themselves (mastering a spoon and generally a
“sipee” or spouted cup) and may seek help or consolation when in trouble
and look to others for entertainment or amusement. Walking should be
more steady by this time. Many 18-month-olds have mastered the ability to
seat themselves in child-sized chairs, throw a ball in response to “Let’s play
catch,” and make towers of cubes.
At this age, many children love to scribble (although in an imitative fash-
ion), and prefer to use either the left or the right hand to do most things. Al-
though hand preference may begin to appear at age 18 months, it is usually
not fully emerged until about age 2. The average 18-month-old’s spoken vo-
cabulary is composed of 7 to 20 words, a mixture of understandable words
mixed in with gibberish. Most 18-month-olds can identify one or two famil-
iar objects by pointing to pictures, and they can identify several parts of the
body. While it is somewhat early for the “terrible twos,” 18-month-olds may
begin to show their temper by either playfully or willfully refusing to com-
ply with what a parent asks of them.
By age 2, most toddlers are very assertive and independent. While the ter-
rible twos don’t strike with the same intensity in all children, it is perfectly
normal for 2- and 3-year-olds to refuse to comply with demands and to test
the boundaries that their parents have set. While this may be incredibly frus-
trating at times, parents need to remember that the child is becoming a
person, with a mind of her own—and is more than capable of letting her
druthers be known in a speciWc situation.
The 2-year-old has begun to run well (only infrequently falling), kick a
large ball, walk up and down stairs one at a time while holding on to a rail-
ing, and open and close doors. His Wne motor abilities have expanded to in-
clude circular scribbling with a crayon, helping to dress and undress himself,
feeding himself with less spilling, and successfully drinking from a sip cup.
Children of this age begin to be able to name body parts, associate use with
objects, and listen to stories. They can identify more pictures. In terms of
spoken language, the average 2-year-old has at least 200 to 250 words in her
vocabulary and can form two-word sentences, although the voice pattern
will be somewhat broken in rhythm when compared to adult speech. Most
2-year-olds begin to make known their toileting needs. Issues of toileting
sometimes become a large struggle in the quest for independence.
As a child progresses to age 2 1⁄2, he starts to master coordination, includ-
ing jumping up and down and walking backwards. Pencil or crayon grasp is
also much more steady. Most 2-and-a-half-year-olds refer to themselves as
“I” or “me” and know their Wrst and last names. Spoken vocabulary starts to
expand and may include repetition of simple nursery rhymes. Between ages
2 and 3, children become much more “helpful” (for example, they will help
put toys away), and they demonstrate some imagination (they “pretend”)
when playing with objects or other people.
By 3 years of age children can go up and down stairs alternating feet, ride
a tricycle, stand on one foot, and attempt to throw a ball overhand. Feeding
is much neater, most buttons can be negotiated to the point of unbuttoning,
and shoes and socks can be pulled on. They may engage in some simple tasks
of body grooming such as washing and drying their hands and imitating
combing their hair. Three-year-olds begin to play simple games with other
children. They should begin to know their age and diVerentiate between the
sexes, count to three, and be able to use sentences of three or more words.
Most 3-year-olds can name several colors and understand three prepositions
(most likely under, over, and similar prepositions), and are extremely curious,
asking endless questions.
Parents can expect 3-year-olds to have some awareness of a dangerous sit-
uation (they may say “That’s hot,” for example). By age 3 most children start
to use the toilet, with some help, although the age when bodily functions are
mastered varies greatly from child to child. In general, as compared to the
2-year-old, the 3-year-old is slightly more cooperative and eager to please.
Sharing and turn taking become more acceptable.
Three-year-olds may be much more fearful than 2-year-olds, however,

and may express displeasure at new situations. Many have diYculty separat-
ing from their parents at bedtime. Fortunately, most 3-year-olds can also
better understand explanations for the cause of their fears. Their average vo-
cabulary is somewhere between 800 and 900 words, with four-word sen-
tences and the ability to tell simple stories and understand actions and pic-
ture telling. By the end of the third year, as the child progresses to preschool,
many parents say they have lost their “baby” and now have a “little person”
capable of thinking and talking his way through situations.
My toddler has Generally, children with increased tone (spasticity) experience delays in
CP. How might walking. A general rule is that children who sit unsupported by age 2 will
his development most likely be walking (with or without braces or assistive devices) by age 4.
diVer from this? Most “tight” children may appear to roll on time or close to it (due to excess
tone, they may actually “Xip”) but then make no further developmental pro-
gress for many months, not crawling or pulling to stand until well after their
Wrst birthday. Hypotonic or “Xoppy” children may actually stand with sup-
port (they may cruise around the coVee table) close to the appropriate age,
but they have long lags before developing enough stability in the trunk to
walk independently.
Children with cerebral palsy often have small or Wne motor developmen-
tal delays. In the toddler years, this is typically seen in their feeding and dress-
ing skills. The child may not have full command of the ability to grasp ob-
jects between thumb and index Wnger and therefore may have to rely on
clumsier, raking movements to grasp objects. Holding a bottle may be diY-
cult, and steadiness with cup drinking may be delayed or impossible. Both
snapping snaps and tying knots rely on smooth, Wne motor control and
good hand-eye coordination, so a child with cerebral palsy whose control is
aVected may have diYculty dressing herself. The ability to grasp a pencil,
generally in place by age 2 or 3, may elude children with CP.
Children with severe cerebral palsy also experience delays in language and
problem-solving abilities. In the toddler years, this may be most noticeable
because the child uses only a limited number of words, or it might be most
apparent because the child is unable to combine words into phrases or sen-
tences. Children with cerebral palsy may understand what they are being
asked to do but be physically limited in their ability to carry out these tasks.
Thus, the child may appear dull because he doesn’t respond, when what’s re-
ally going on is that he is physically unable to carry out the task.
On standard IQ testing for the 1- to 3-year-old, much of the testing mate-
rial involves tasks requiring the child to use motor skills and to perform in
response to commands; the results of such a test for the child with CP may
be misleading. For one thing, the child’s language skills may be underesti-
mated if his disability prevents him from forming words. We recommend
that parents have their child tested by professionals who are skilled in inter-
preting results of “standard IQ” tests in children with cerebral palsy, with an
emphasis on nonverbal performance standards. This kind of specialized test-
ing may not be available in the school diagnostic setting. In this case, outside
(independent) evaluation should be sought to obtain an accurate picture of
the child’s abilities.
The world of a 1-, 2-, or 3-year-old involves play and the beginning of
social interaction. At Wrst a child just plays alongside other children (this is
called parallel play) or by imitating what another child is doing (imitative
play), but later on she will begin to play with other children, in interactive play.
A youngster with a signiWcant motor disability is physically unable to keep
up with the other active toddlers and must be encouraged to persist in activ-
ities to help foster social skills such as taking turns and sharing. Circle games,
storytelling, acting out characters, sing-alongs—all are examples of less phys-
ically demanding activities that can help the child with cerebral palsy, with
or without cognitive limitations, learn social skills.
Are there any By the time a child is 2 years old, most parents are anxiously anticipating the
guidelines for toi- start of toilet training and the end of diapering. But a child must be tem-
let training? peramentally, physically, and cognitively ready to accept toilet training in or-
der to have any success at the task. Daytime bladder control can usually be
achieved by 32 months (the range is from 18 to 40 months) and bowel con-
trol by 29 months (with a range from 16 to 48 months). Most experts (and
parents looking back on the experience) agree that the best approach to toi-
let training is a fairly casual, nonconfrontational introduction to the process.
Indications of readiness include a child’s ability to understand that he is
“wet” or “soiled” and an ability to communicate this information, through
gesture or word, to the caregiver.
A child probably cannot voluntarily control the functioning of bowel or
bladder until age 18 months. Before that age, or for a child who is mentally
disabled, toilet training is more a reXexive act than a cognitive act. The child
who is put on the potty seat will sometimes by coincidence relax her sphinc-
ter tone and produce a bowel movement, but this is very diVerent from vol-
untarily directing her muscles to relax so she can evacuate her bowels.
How does a child’s Training the child with cerebral palsy may involve several diYculties. A child
cerebral palsy may physically be unable to sit on a toilet seat, for example, and therefore
aVect toilet will have a diYcult time getting urine or a bowel movement into the bowl.
training? This problem is best remedied by using one of the many adaptive potty seat
systems available. A physical or occupational therapist can provide guidance
in the selection and purchase of these systems.
Many children have a fear of losing a part of their body as they see their
bowel movements Xushed away. Although most children come to terms
with this in a matter of a few weeks, some children continue to imagine that
part of them may be “Xushed away.” This fear may be accentuated in the child
with CP, whose unsteadiness on the potty may lead to falls. Unsteadiness
during elimination can be very scary to a young child. To overcome this, usu-
ally all that is needed is reassurance by the parents that all is well and that they
will not let the child be harmed or Xushed away. A child with a persistent fear
of toileting may be helped by a physician or a behavioral therapist.
The child with cerebral palsy and mental retardation poses an additional
challenge regarding toileting, in that the child may not understand the need
to eliminate in a bathroom setting. These children often respond best to a
program that incorporates “clock timing,” whereby the child is placed on the
toilet half an hour or an hour after each meal every day. Parents can ask the
physician or other health care provider to give them a detailed description of
this method of toilet training, sometimes called habit training.
How do I handle All children go through periods of having temper tantrums, most com-
my child’s temper monly in the second year of life. Most tantrums arise from frustration or
tantrums? the inability to communicate wants or needs through words and gestures.
Some tantrums seem to arise out of the blue, apparently unprovoked, and
may purely be a child’s way of testing his parent’s or caretaker’s limits.
Parental response to tantrums should allow children to regain their sense of
self-control.
Physical punishment rarely has an eVect on tantrum throwing. Physically
punishing the child may bring that particular tantrum to an end, but the
long-term pattern of throwing tantrums will not be broken by spanking.
Rather, the parent should attempt to distract the child and get him or her in-
volved in a more appropriate or more easily handled activity. If this fails,
then isolating the child in a “time out” situation will usually be eVective in
sending the message that the given behavior is unacceptable.
Setting limits is accomplished by displaying a mixture of consistent dis-
appointment with unacceptable behavior and praise for demonstrating ac-
ceptable behavior. Rewards are also useful, as are behavior systems such as
“point cards,” which award prizes once goals are reached. Rewards can serve
as meaningful reminders to children that they can behave and they can stop
tantrums, if they want to.
How does cerebral As a parent of a child with physical limitations, you must realize that your
palsy aVect temper child is just as prone to temper outbursts and tantrums as any other child.
tantrums? Certainly tantrums may arise from a child’s frustration surrounding his in-
ability to be understood, especially when receptive abilities (understanding
language) exceed expressive capabilities (speaking or communicating). Ex-
tra time may be needed to Wgure out your child’s communicative intent—to
“crack the code” of what he is frustrated about. However, escalation of be-
haviors to get your attention may cross the line into harm to self or others.
You need not feel guilty for imposing appropriate limits on your child or for
discussing intolerable behavior with him. Applying consistent, loving rules
is the best approach when children act up. Should the child’s behavior be-
come harmful to him or to others, you may want to seek professional coun-
seling for the child.
What about sleep One of the most sought-after developmental milestones in any home is the
disturbances? child’s ability to sleep through the night. Almost three-quarters of all infants
will sleep at night without interruption for six or seven hours by 6 months
of age. When a young infant wakes up during the night, it is usually because
he or she is uncomfortable—hungry, wet, or badly positioned—and needs
someone to respond or soothe him or her back to sleep. In the second year
of life, some children develop problems getting to sleep, often because of
anxiety over separation. Setting routines and rituals (reading a story, having
a regular bath time, drinking a cup of juice or milk) often goes a long way
toward soothing a child with separation issues at sleep time.
How can CP For children with a physical disability, fear of separation may be compounded
aVect sleep? by a sense that they are helpless to get up and reach their parents. Should
your child’s anxieties become intense, you may need to reassure your child
that you check on him frequently while he sleeps. Because some nighttime
awakening can be due to the need for position changes in children with CP
(due to muscle tone imbalance), repositioning your child and comforting
him may be helpful. Using an intercom or a baby monitor may be helpful,
because it allows your child to realize that you will hear him and be able to
respond should he need you in the middle of the night.
Should I be con- Exploration of the body, including the genital or “private” areas, is a natu-
cerned about my ral, healthy occurrence in children of all ages. While many theories and
child’s mastur- cultural or religious biases exist to explain or condemn masturbation, most
bation? developmental experts agree that discovery of the genitals and manipula-
tion of them for pleasure is a natural process, occurring in all children re-
gardless of physical or mental limitations. Perhaps the best approach for
parents of a young child (age 3 to 4) is to ignore the behavior. As children
get older, they can be told that certain parts of the body are private and
should be touched by them in a private place such as the bathroom or
bedroom, not in front of playmates. Most children in the preschool years
do not make the mental connection between masturbation and sexual plea-
sure. That is, they may touch themselves out of habit, perhaps as a way of
self-soothing, but they are not consciously teaching themselves to achieve
sexual satisfaction.
How parents react to masturbation in an older child is often colored by
the parent’s own feelings, cultural practices, or family experiences. There are
no data to suggest that masturbation leads to or comes from perverted
thoughts or is associated with sexual aggressiveness. Parents should discuss
with their children the concept of taking care of bodily functions in private.
In addition, parents should instruct children that there are inappropriate so-
cial settings for masturbation. If necessary, guidance can be sought from a
pediatrician or a developmental counselor.
Ages Four to Six

Somewhere around the fourth year of life, children develop the ability to
play with several children in a cooperative setting, and they are able to share
with others more readily. The vast majority of 4-year-olds are toilet trained
and can feed themselves and generally amuse themselves in a situation
that is structured and supervised by adults. Their language has progressed,
and use of plurals, diVerent tenses (distinguishing present and future, for ex-
ample), and opposites has emerged, as has the ability to tell stories. Children
at this age are capable of dressing and undressing with supervision and can
copy simple shapes, draw stick Wgure people, and imitate simple block de-
signs. The child can now throw a ball overhand or underhand, and can climb
in a coordinated way.
A 4-year-old may be much more verbal about his fears, but he will prob-
ably separate more easily from his mother than will a younger child, because
he can understand that his mother will return. Four-year-olds are generally
less eager to conform and please than children at 3 years of age, because the
desire to assert their own will reemerges, although not usually as strongly as
during the “terrible twos.” Four-year-olds tend to understand special friend-
ships and seek out play eagerly. Language develops rapidly to the point
where four- and Wve-word sentences are used, simple words can be deWned,
and stories are listened to enthusiastically. Many 4-year-olds can follow
multiple-stage, rapid-Wre commands, know at least four colors and the
diVerence between night and day, and recognize some capital letters as well
as shapes.
The 5-year-old can skip, kick a ball several feet, and run and jump. This is
the age when children begin to ride a bike with training wheels. Five-year-
olds can hold a pencil using the thumb and index and middle Wngers (as an
adult does), can eat with a knife and fork, and know how to spread butter.
Tying shoes is still diYcult for a child at this age, and the child may still re-
verse letters and numbers. The child’s knowledge expands to include names
of siblings (and often their ages) as well as the child’s own address and phone
number and basic colors and shapes. A 5-year-old’s language expands to
where it may include Wve- and six-word sentences.
Social interaction is better developed. Most 5-year-olds want to be
“good,” and they actually seek out adult approval. Small group play is gen-
erally favored, but 5-year-olds also enjoy “team” games and sports. Fears
resurface: the child may worry about separation from his mother, lightning
and thunder, or becoming lost. Generally, however, 5-year-olds “go with the
Xow” and can be led back from their fears with gentle reassurance, since they
have the ability to understand past, present, and future, and to understand
that separations will not be permanent.
The seventh year of life, between age 6 and age 7, is often one of signiW-
cant transition, falling between the preschool and school years. Many chil-
dren at age 6 are easily excitable and tend to show oV and act silly, with oc-
casional spells of more mature behavior. The inconsistency in behavior is
probably the result of trying to Wt themselves into the tasks of schooling and
new regimentation. Six-year-olds are ready to attend a full day of school but
still need a good deal of physical activity to burn oV excess energy. They are
notorious for procrastinating but form friendships easily and readily join in
enjoyable activities.
Most 6-year-olds can describe how several objects are diVerent or alike,
begin to have an understanding of the concept of time, and know the alpha-
bet. While a 5-year-old can count aloud to 20, a 6-year-old understands the
concepts of numbers up to 10, knows all the primary colors, and understands
simple money concepts. Gross motor skills are much smoother, as balance
emerges along with true physical independence in purposeful activities. In
the Wne motor sphere, around 6 years of age, the child begins to develop skill
at grasping a pencil like an adult, although he or she will press fairly hard
while writing.
Six-year-olds are totally independent in self-care and are able to handle
simple household tasks. The average vocabulary consists of approximately
1,500 to 2,000 words, but the receptive fund of knowledge (words whose
meaning the child understands, as demonstrated by pointing to pictures)
may be much greater: 10,000 to 13,000 words. Language is now used in a
much more social way, to include others and to express ideas, especially by
children who have early school experiences and who have come to under-
stand that words are listened to while gestures are often ignored.
How might the The child with physical limitations may have a hard time keeping up with
development of a the explosion of physical activity that occurs during the preschool years. Ver-
child with CP be bally talented youngsters with cerebral palsy may begin to express their frus-
diVerent from tration over this and may even begin to ask, “Why me?” Parents need to
this? provide alternative activities for the child, such as swimming, adaptive
horseback riding, and participation in Special Olympics. Despite these out-
lets, the preschool child with CP may realize that his disability may restrict
him from fully participating in activities. Bicycle riding may be diYcult, co-
ordinated self-feeding next to impossible, and handwriting unintelligible.
Occupational therapists can help by recommending adaptive equipment
such as computers and special eating utensils.
Daily living activities such as bathing and toileting may become more
cumbersome during these years, as the child grows physically larger and may
be having diYculty positioning himself for these tasks. Bath chairs, potty
seats, home lifts, and van modiWcations are often helpful. Most gross and
Wne motor skill patterns are set by this time, so the aims of therapy are to
maximize the child’s potential in his or her environment through adaptive
equipment modiWcations.
The child who had expressive speech and language delays prior to the pre-
school years may now obviously appear to be a slow talker compared to his
peers, who tell stories and engage in more adultlike conversation. Children
whose speech is hampered by tone or a diYculty in articulating words can
learn to communicate more eVectively during the preschool years using a
combination of signing and communication boards and computer-assisted
devices. A common misconception is that a child who is taught sign or pic-
ture language will then “forget” how to talk or become too lazy to use spo-
ken words. Actually, alternative means of communication often provide
these youngsters with an avenue for expression, and this helps relieve their
frustrations over not being understood. When the child is able to speak, the
child’s speech will progress along with the other means of communication.
At this age the sense of self or identity emerges, adding to children’s se-
curity in themselves, their family, their school world, and their peer world.
Children with severe motor disabilities may experience a sense of loss at their
inability to mix with others and may withdraw or, conversely, act out. Par-
ents can help their child feel as if she belongs by fostering a “can do” attitude
regarding their child’s desire to be with others. Children need group experi-
ences in outings, scouting organizations, church groups, and elsewhere as
they pass from preschool into the elementary school years, so that the foun-
dation for personal growth and exploration is set. Put more simply, a child
with physical limitations should not be protected from or excluded from age
or cognitively matched social experiences just because his parents feel he is
diVerent and might be sensitive to mixing with other, perhaps more able-
bodied, children. Parent support groups and other resources often oVer sug-
gestions for activities suitable for children with motor disabilities, and these
should be explored. If summer camp opportunities exist, they should be pur-
sued (even at this age), since they are usually nonthreatening for the child.
Ages Six to Twelve

As the child grows older, he not only matures physically but is expected
to perform in a school setting. From age 6 to age 12 children attend elemen-
tary school and are exposed to the “rules of learning” and the whole idea of
a social world outside the family and immediate neighborhood friends.
Seven- and 8-year-olds are generally fairly anxious to please—they may even
be somewhat perfectionist in this sense—and are fairly self-conWdent. The
younger 7-year-old will be somewhat sensitive to praise and blame, con-
cerned about right and wrong. A sense of humor in most children emerges
by about the eighth year of life. Eight-year-olds are thought to have the ca-
pacity for self-evaluation. Participation in group activities, including team
sports, becomes important, and participation in organized activities is often

extremely important to this age group.
Eye-hand coordination improves at this age, and by 7 years of age most
children have learned the days of the week, can tell time, and are beginning
to think in concrete terms. Handwriting skills are perfected, and the child
can now correct something that doesn’t “look right” on the written page.
Seven-year-olds generally read and write between the Wrst and second grade
level. Written letters may occasionally be reversed, although this mistake
generally disappears by 8 years.
Adult concerns about the child’s learning abilities begin to surface as
school tasks progress from word decoding and basic addition and subtrac-
tion to actual reading comprehension and applying of math principles. Any
developmental lag as it relates to a child’s ability to understand directions
may show up as academic or behavioral diYculties in the classroom; such a
lag may be simply a learning ineYciency, or it may be a true learning dis-
ability. In either case, it needs to be closely monitored.
The 9-year-old’s language ability diVers slightly from that of younger
children. True sequencing, such as day, month, and year, as well as ordering
of information, can be understood by the 9-year-old. Simple multiplication
and division concepts also appear to make sense to most children at this age.
Balance and coordination have progressed to the point where the child can
stand on one leg, can play follow the leader, and can play backyard games
such as kickball.
SigniWcant sex diVerences begin to appear in the tenth year of life, as girls
generally begin to appear more mature than boys, with some girls beginning
to show physical signs of sexual maturation. Most 10-year-olds understand
rules and will follow them. Lasting friendships are formed that replace the
earlier, temporary, “play friends.” Ten-year-olds begin to understand simple
fractions, including parts of an hour, and are able to understand the concept
of higher numbers and possibly begin to think in abstract terms.
The ability to think abstractly fully surfaces in the preadolescent youth
(11 to 12 years of age). Preadolescents begin to reason through problems
and situations, understand social and political issues, and perhaps even
form an opinion on family matters. Preadolescents are joiners of groups
and clubs. At this point in development girls begin to fall behind in physical
strength, although they are generally taller than boys for the next several
years.
How might the The increasing hand-eye coordination that occurs in the school-age years
development of a may be signiWcantly limited in the child with physical disabilities, and the
child with CP ability to write legibly may be hampered by Xuctuations in tone (increased
diVer from this? or decreased) in children with cerebral palsy. Many children Wnd the com-
puter tremendously helpful in compensating for diYculties with writing,
and the computer may be especially helpful for the child with athetoid
movements, for whom an adapted keyboard may make a signiWcant diVer-

ence in communication skills.
DiVerences in physical ability, particularly at team sports, become clear
among school-age children. A child’s self-esteem is often derived from his
perception of how others view him. For this reason, children with cerebral
palsy who have normal cognitive abilities need to receive continued reassur-
ance that they can master some physical activities. Even signiWcantly dis-
abled children can engage in supervised adaptive aquatics and bowling and
modiWed dance routines.
The child with hemiplegia has some unique Wne and gross motor limita-
tions that may become strikingly evident in the school years. Hemiatrophy
(poor development of musculature and bone structure) on the side of the in-
volved limb may appear more obvious as the child’s growth spurt begins.
The child may be unable to keep up in activities such as physical education,
climbing, and throwing or batting a ball. Adaptations made for doing things
(such as using Velcro or loops instead of buttons) may function well but may
make the child self-conscious; she may wonder why she can’t button her
clothes. Sometimes it’s helpful to buy the child clothes like those her class-
mates are wearing, explaining that hers are specially tailored for her.
Many children with hemiplegia can use their uninvolved side for writing
and for performing most Wne motor tasks, so the child can do most activities
of daily living, such as dressing, eating, and teeth brushing, without assis-
tance from parents. Subtle learning diYculties and true learning disabilities
will surface during the school years. Even children with cerebral palsy who
have so-called normal intelligence must be monitored closely if they perform
poorly in school. Parents need to determine whether the child is performing
less well than expected because of anxiety (the child may be wondering why
he is diVerent, causing his attention to wander from schoolwork), or whether
the child might truly be unable to master higher academic concepts due to a
learning block or disability. (A learning block may be global, meaning that
all areas are aVected, or it may be speciWc to one academic area.) The child
may be performing poorly in school because she is mentally limited com-
pared to her classmates. Psychological testing can help sort these issues out,
and more accurate class placement and utilization of special education re-
sources help such children reach academic goals.
From age 6 to age 12, the child with cerebral palsy may perceive himself
to be diVerent and begin to isolate himself from social situations so he
doesn’t feel hurt when others make comments or exclude him from team play.
These are the years when parents can have the most profound impact on the
child’s emerging identity. Frank discussion—being honest about the child’s
limitations—is probably best, although overpraising for a job well done can
occasionally bolster a child’s self-esteem. Even very cognitively limited chil-
dren respond to praise and reward, and detect even the slightest amount of
parental criticism or disapproval. The school-age years for the child with
cerebral palsy may be a time when the family chooses to seek counseling or
to reactivate themselves in family support groups to obtain new strategies to
bolster their child’s positive sense of self.
Ages Thirteen to Eighteen

The adolescent years are years of physical and sexual maturity and intel-
lectual and social expansion. Increases in height and weight occur earlier in
girls than in boys. The so-called growth spurt in girls may begin from age 10
to age 11, and generally is nearly completed by age 13 to age 14. In contrast,
boys begin rapid growth between 13 and 15 years of age. Sexual maturation
is a gradual process in both sexes. In girls, sexual maturity is accompanied by
the growth of pubic hair, widening of the hips and pelvis, and development
of mature breasts with projecting nipples. Boys grow pubic as well as body
and facial hair, and the penis and testes grow and mature.
Along with the physical changes of sexual maturation comes the ability to
produce children—the stage of maturation deWned as puberty. Puberty in
girls is deWned as beginning at menarche, the Wrst menstrual period. No such
clear beginning for puberty is noted in boys, but most pediatricians would
agree that growth of the testes in the scrotal sac and growth of the penis are
signs that puberty has begun.
Gains in height, weight, and physical sexual maturity are only part of
the changes that occur in adolescence. As every person who has ever been
through adolescence, and every parent who has raised teenagers, will tell
you, these years are among the most confusing for a young person searching
for his or her identity. Psychologists have long considered adolescence a pe-
riod of potential turmoil. From being completely dependent on the family,
the individual begins to turn increasingly to friends, and the evolution of his
own identity continues. All individuals, whether able-bodied or physically
limited, can experience anxiety and mood changes as they try to make sense
of their adolescent world.
How might cere- Discussions of adolescence in children with cerebral palsy are few and far
bral palsy aVect between, probably at least in part because the focus for many years has been
the adolescent? on physical maturation rather than on psychosocial development (see Chap-
ter 4). Some children with cerebral palsy experience precocious puberty, a
hormone-induced early onset of sexual maturation. The child’s body under-
goes all of the aforementioned physical changes prematurely. In girls, breast
development and pubic hair can appear at a young age (even in the infancy
or toddler stages). In boys, enlargement of the penis and testes can occur at
very young ages as well.
Signs of precocious puberty should be brought to the physician’s atten-
tion, so that underlying causes can be investigated. The changes of puberty
normally occur under the control of the pituitary, or hypothalamic, and
gonadal glands. The more unusual causes of precocious puberty include

endocrine (hormonal) imbalance, lesions or disturbances of the central
nervous system, and genetic syndromes. Generally, however, precocious
puberty in the child with cerebral palsy is not due to a rare disease. In “nor-
mal” children, 50 to 75 percent of precocious puberty exists without other
pathological Wndings. Perhaps the brain lesion or injury associated with CP
also contributes to the disordered hormonal signal that triggers early sexual
maturation.
While some children with cerebral palsy undergo precocious puberty,
others may experience delayed sexual maturation well into their teens or
early twenties. Some girls with CP never menstruate. The reason for delays
or absences is unclear. The vast majority of adolescents with delayed puberty
will, however, eventually achieve sexual maturation. In girls who are se-
verely physically disabled, the delayed or absent menstruation can be an ad-
vantage for reasons of hygiene. Generally, a major medical exam is under-
taken only if a girl reaches age 13 or 14 without breast buds (breast buds
generally develop one and a half to two years before the onset of periods). It
may be helpful to consult with your child’s physician as the teenage years ap-
proach. If necessary, a specialist in puberty such as an endocrinologist may
be asked to help evaluate the delay.
Support groups, social activities with peers, and a supportive school and
home environment can be crucial to the adolescent’s emotional well-being.
Counseling should be sought if suicidal, hopeless, or self-abusive or self-
injurious behavior (including substance abuse) surfaces during this time.
Parents may also experience much joy as they watch their youngsters turn
into men or women. Praise and admiration for jobs accomplished, academic
achievement, and exploration of new ideas is always helpful to a teen’s self-
esteem when it comes honestly from a parent.
Career counseling for potential academic pathways should begin early
in adolescence. The teen who has cerebral palsy and good cognitive ability
might be guided to a college preparatory academic curriculum or to job
training such as apprenticeships. The teen needs to know that his or her
physical limitations don’t have to block the pathway to achievement of per-
sonal growth in academic or employment pursuits. For teens with cerebral
palsy and some cognitive limitations or retardation, emphasis should be
placed on mastering daily living skills. Employment opportunities, includ-
ing “sheltered workshops,” can be oVered to help the adolescent make the
transition from a school to a work environment.
In this chapter we have seen the variability within normal child develop-
ment as well as the variety of eVects which cerebral palsy can have on devel-
opment. Most importantly, we see the marvelous uniqueness that is part of
each child.
Medical
Problems
Associated
with
Cerebral
3
Palsy
♦ B E C A U S E cerebral palsy is a condition caused by damage to the

central nervous system, many of the complications of cerebral palsy are neu-
rological. Children with CP may also have orthopedic problems—problems
that aVect the spine, bones, joints, muscles, or other parts of the skeletal sys-
tem. And they may have problems that are considered to be “secondary” to
the neurological and orthopedic problems. One example of a secondary
eVect of CP is poor nutrition caused by the child’s diYculty in swallowing.
For some children, one of these other kinds of problems may dominate,
and the cerebral palsy will be a relatively minor issue. For example, for a child
with CP who is able to walk and who has few physical limitations but is se-
verely retarded mentally, the focus of care will be on the mental disability
rather than on the cerebral palsy.
In this chapter we consider the neurological and secondary problems as-
sociated with cerebral palsy. (The orthopedic aspects of CP are covered in
Chapters 5 through 7.) Neurological problems associated with cerebral palsy
include:
Seizures and epilepsy Behavior problems

Mental retardation Visual impairment
Learning disabilities Hearing loss
Attention deWcit–hyperactivity Speech impairment
disorder Swallowing diYculties
Hydrocephalus
The secondary eVects of cerebral palsy include:
Poor growth Sleep disorders

Poor nutrition Upper airway obstruction
Aspiration pneumonia Communication disorder
Gastroesophageal reXux Tooth decay and gum disease
Frequent fractures Hernia
Constipation Bladder control problems
Drooling
42 ♦ medical problems associated with cerebral palsy
Primar y Care Issues

What’s the role of The primary care physician (the pediatrician or family practitioner) is the
the doctor in car- doctor who provides Wrst contact care, preventive care, and continuity of
ing for the child care over time, no matter how complex. The primary care physician should
with cerebral play a central role in caring for a child with a developmental disability such
palsy? as cerebral palsy, and should remain in contact with the family as the child
matures through the years. Thus, the pediatrician or family practitioner
should play the same role he or she plays for any pediatric patient. The child
with cerebral palsy should receive the same care from his or her primary care
physician that every other child does.
Even when the child is being seen by various specialists, the pediatrician
or family practitioner should remain at the center of medical activity, acting
as the medical coordinator. The specialist sends information on to the pri-
mary care physician so that he or she can explain the various care options to
the family and help the family decide between various treatment options.
The primary care physician remains the advocate for the child within the
medical care system. The parents are advocates for the child, as well; they
need to help the child navigate the educational system and the working
world, too, if that’s appropriate. The pediatrician helps the family Wnd an
appropriate physician when the child becomes too old to stay with the
pediatrician. Parents also must begin to anticipate, as the adolescent ap-
proaches adulthood, when it is time to help the young adult leave home and
begin to function in the adult world. A sheltered setting or an institutional
setting is appropriate for some individuals, though other people with cere-
bral palsy can achieve full independence. And for them to achieve full adult-
hood, independence is a necessity.
Why does my child While many of the concerns related to CP (such as seizures and orthopedic
need regular problems) are addressed during a visit to the specialist, primary care issues
checkups if she’s need to be reviewed when your child visits his or her pediatrician. The pedi-
already seeing a atrician monitors physical growth (by measuring and recording the child’s
specialist? height, weight, and head circumference), general developmental progress
(especially in areas other than the motor area, which is expected to be de-
layed in cerebral palsy), and immunizations, while providing counseling on
such issues as accident prevention (tables 3, 4). The pediatrician provides vi-
sion and hearing screening, both of which are extremely important, partic-
ularly for children with an increased risk of sensory deWcits, such as children
who were born prematurely.
The primary care physician’s role in providing guidance to both caregiver
and child evolves over the years. For toddlers, providing parents with guid-
ance about accident prevention is most important. Behavioral issues gain
importance for the preschool and school-age child, and issues involving sex-
uality must be addressed for the adolescent and young adult.
medical problems associated with cerebral palsy ♦ 43
Should my child Yes. In the United States today, infants are routinely immunized against
with cerebral palsy diphtheria, pertussis, tetanus, polio, Hemophilus inXuenza, measles, mumps,
receive the same rubella, hepatitis B, varicella (chickenpox), and pneumococcus. Thus, by the
immunizations as time the child has reached the age of 18 months—whether or not the child
other children? has CP—he or she should be protected against all these diseases.
The child with CP should receive all these immunizations, as should pre-
mature infants, and at the same age as other children. In addition, consider-
ation should be given to administering the inXuenza vaccine each winter to
children with CP, especially to children who cannot walk. (Someone who
spends most of the time in bed or in a wheelchair is likely to get sicker from
inXuenza than someone who is up walking, because such a person doesn’t
breathe as deeply as an active person does.)
Are there any vac- The only vaccines that might be considered controversial are the vaccines
cines that should against pertussis (whooping cough) and measles. Pertussis vaccine has rou-
be avoided because tinely been given in combination with vaccines for diptheria and tetanus in
my child has CP? the immunization known as DPT. For many years the pertussis component
of this vaccine was blamed for the onset of neurological problems, including
severe brain damage, in some children. A number of studies published in the
1990s cast doubt on this picture, however, and suggested that the pertussis
vaccine rarely if ever causes neurological problems. Nevertheless, concern
about this vaccine led to the manufacture of a new form of the pertussis vac-
cine (known as acellular pertussis vaccine) which is not made from the bac-
teria itself as the original vaccine had been. This new vaccine has been found
to have fewer side eVects than the original DPT vaccine, including less fre-
quent fever and febrile seizures. The measles vaccine has been blamed by
some for autism or pervasive developmental disorders in children. A num-
ber of good scientiWc studies have failed to Wnd a link between autism and
vaccines. The incidence of autism does seem to have risen in the past ten
years, for reasons that are not known, but measles or measles-mumps-
rubella (MMR) vaccine would not appear to be one of them.
The Committee on Infectious Diseases of the American Academy of
Pediatrics, which advises on immunization practices, recommends that the
pertussis component of the DPT vaccine not be given to children who have
a progressive neurological disease, that is, a disease that is ongoing and caus-
ing loss of function. By deWnition, CP is a nonprogressive condition. There-
fore, this recommendation does not apply to children with a diagnosis of CP.
With the new acellular DPT vaccine and the new data that disprove that the
pertussis vaccine was ever a problem, there is no reason to avoid immuniz-
ing a child with CP against all childhood illnesses, including pertussis and
measles. In a child who is somewhat debilitated or is bed-bound, the risk
from pertussis or measles (or any of the illnesses that these immunizations
prevent) is far greater than the risk from the immunization. Any of these ill-
nesses can result in hospitalization and, in severe cases, death.
Table 3 Recommended Evaluations/Health Maintenance Schedule for Children with Cerebral Palsy
Procedure 0–3 mo 6 mo 9 mo 12 mo 18 mo 24 mo 36 mo 3–5 yr 5–10 yr 10–15 yr 15–20 yr
Medical evaluation
Initial/interval history and physical examination All visits
Developmental/behavioral assessment All visits
Orthopedic evaluation (see table 4) All visits
Measurements
Height and weight All visits
Weight for height or BMI All visits
Head circumference X X X X X X X
Blood pressure X X X X
Laboratory
Hereditary/metabolic screening X (Should be done according to state law)
Hemoglobin or hematocrit X Then as clinically warranted
Urinalysis X Then as clinically warranted
Lead, cholesterol, TB screening Testing should be done for high-risk patients, as determined by the child’s physician.
Immunizations Per AAP Guidelines (www.cdc.gov)
Referral to education program—early intervention with X X X As early as clinically suspected so eligibility can be established
primary therapies (P.T., O.T., speech/language) and/or
Part H Eligibility programs
Referral to cerebral palsy team X X X As early as clinically suspected so diagnostic workup, evaluation, and
treatment recommendations can be formulated and clinical course followed
Nutrition evaluation
Intake assessment All visits
Anthropometrics As clinically warranted
Hearing assessment/screening All visits
OAE testing X As clinically indicated
Pneumatic otoscopy X X X X X X X
Audiometry
Tympanometry
BAER
} As clinically warranted, especially if screening failed
Vision assessment/screening All visits

Ophthalmic evaluation All visits
Earlier referral to a specialist and more frequent screening if any ophthalmologic
abnormality suspected or if history of premature birth and/or low birthweight
Dental evaluation (every six months) X X X X X X X
Anticipatory guidance All visits
Family support services e.g., parent groups, formal counseling, All visits
Part H eligibility access to SSI/MA, sibling support
Oral motor/swallowing As clinically warranted, or if failure to thrive, dysphagia (choking/gasping on food), or

frequent congestion present
Review education program X X X X
Psychometrics (psychoeducational testing) at school entry or at X

any time learning problems are identiWed or suspected.
Review puberty, sexuality X X X

(gynecological issues for girls)
Note: BMI, body mass index; TB, tuberculosis; AAP, American Academy of Pediatrics; P.T., physical therapy; O.T., occupational therapy; OAE, otoacoustic emissions; BAER, brainstem audi-
tory evoked response; SSI/MA, Supplemental Security Income/Medical Assistance.
Source: Adapted from AAP Policy on Preventive Pediatric Health Care, (RE9939), March 2000.
Table 4 Recommended Evaluations of Musculoskeletal Function in Children with

Cerebral Palsy
Age (Months)
1 2 4 6 9 12 15 18 24 36 48
Musculoskeletal
Motor Development A A A A B C C C D E E
A. Newborn hip examination: Check for hypotonia, hypertonicity. Use ultrasound for any
questionable abnormalities; orthopedic referral if any abnormality on ultrasound.
B. Hip abduction: Check with hip and knee extended. If less than 45° each, hips need x-ray.
C. Same as B: If not sitting independently, needs to be Wtted with adaptive seating for feed-
ing and play. Refer for seating to P.T., O.T., or seating clinic.
D. Same as above: All children should now be standing; refer for stander evaluation if non-
ambulatory. Referral for orthotic assessment should be made by orthopedist or physia-
trist. If nonambulatory, hip x-ray is required.
E. If nonambulatory: Hip exam and x-ray are required every 6 months; if greater than 45°
abduction, orthotic check every 6 months. Gait problems requiring assistive devices or
orthotics should also be evaluated every 6 months by orthopedist or physiatrist.
Age (Years)
5 6 7 8 9 10 11 12 13 14 15 16 17 18
F F F F G G G G H H H H H H
F. Orthopedic surgery, baclofen pump, or dorsal rhizotomy may be considered to improve

gait. Power wheelchair prescription usually Wrst considered. All other information as
above.
G. Continue hip exam: But x-ray only yearly. Examine for scoliosis; x-ray if deWnitely present.
H. If nonambulatory: Progressive scoliosis needs fusion. If ambulatory: Needs Wnal gait cor-
rection. Either should be seen yearly by orthopedist or physiatrist.
In conclusion, we will say that if your child has new-onset neurological

problems such as seizures and you have not been given a deWnite diagnosis
of CP, or if the diagnosis is in doubt, then your child should receive a vaccine
without the pertussis component. In any case, parents should discuss the ad-
vantages and disadvantages of this vaccine with their child’s pediatrician. No
other vaccines need to be avoided in a child who has CP.
What are the pro- In 1986 Congress passed a law that funds a program to compensate parents
visions of the of children who suVered neurological damage from vaccines that are re-
National Child- quired by state law. The purpose of the law is to keep parents whose children
hood Vaccine suVer neurological damage from such a vaccine from having to go through
Injury Act? the court system to sue an individual physician or manufacturer of the vac-
cine. Instead, the government pays the family for expenses related to the
neurological damage and loss of future earning ability. There are speciWc
symptoms that qualify a family for compensation under this law if the symp-
toms occur very close to the time of immunization. If you believe that your
child has suVered neurological damage because of an immunization, your
doctor can call in a report to the Department of Health and Human Services.
Or you can call this number yourself: 1-800-338-2382.
Epilepsy/Seizure Disorder
What are The brain normally has electrical activity going on within it in a controlled
seizures? manner. A seizure is a sudden out-of-control event that can cause involuntary
movements and/or behavior changes, and a change in awareness. It occurs
when there are bursts of abnormal electrical activity in the brain which in-
terfere with normal brain functioning. Epilepsy is a group of disorders char-
acterized by recurrent seizures. Epilepsy is not a disease.
What causes a In many cases of epilepsy, no cause for the seizure is ever found. Cases in
seizure? which the cause is known include the following:
• Gestational. When a woman is pregnant, the fetus may be harmed by an
insult to the brain such as a viral infection of the mother or bleeding in the
brain of the fetus. Abnormal brain development can also occur during
this time. The same list of possible causes of CP listed in chapter 1 could
also cause epilepsy.
• Genetic. There may be causes that are handed down from parents to chil-
dren through genes. Frequently, neither parent has a recognized history
of epilepsy.
• Metabolic disorders. These are problems that can occur when certain en-
zymes in the body are abnormal, resulting in an accumulation of abnor-
mal proteins. These are genetic disorders.
• Infection. The aftereVects of meningitis, an infection in the brain or spinal
cord, or encephalitis, an infection in the brain.
• Traumatic. The result of severe head trauma from a fall, child abuse,
sports injury, or bike or car accident. The injury can cause scarring in the
brain.
• Neoplastic. Brain tumors, leukemia, or other cancers.
• Vascular. A problem with the veins or arteries in the brain.
• Intraventricular hemorrhage. A bleed in the brain often related to pre-
maturity.
• Asphyxia. A lack of oxygen to the brain that can occur before, during, or
after the child is born.
• Poisoning. Ingestion of lead, alcohol, or other substances that are toxic to
the brain.
Cerebral palsy (CP) is also associated with scarring or some form of brain
abnormality. Therefore, CP is often associated with seizures.
How common are In the general population, the incidence of epilepsy is 0.5 to 3 percent. Among
seizures? children with cerebral palsy, however, the incidence is increased to approxi-
mately 30 to 50 percent. Epilepsy is more common in the child with the spas-
tic quadriplegic or hemiplegic forms of cerebral palsy. Complex partial seizures
are the most common type of seizures in the person with cerebral palsy.
How are seizures Seizures are diagnosed based on the history of the event, medical history,
and epilepsy diag- and physical and neurological examination and tests. Information obtained
nosed? about the seizure event include the timing of the event, warning signs before
the event, parts of the body involved, awareness during the event, loss of
bowel or bladder control, length of the event, presence of weakness on one
side of the body after the event, appearance of the child once the event is
over, memory of the event, and presence of fever or illness at the time of the
event. The neurological examination tells the health care provider how cer-
tain parts of the brain function.
What kinds of Diagnostic testing can help make the diagnosis of seizures or epilepsy. The
tests are performed testing may help the health care provider Wnd out what problem is in your
when someone is child’s brain, or what the reason is for your child’s seizures. Numerous tests
being evaluated are available.
for seizures? An electroencephalogram (EEG) is done to look for abnormal brain activ-
ity by recording the brain’s electrical activity. It is usually done with the child
who has been sleep deprived the night before the test, both awake and
asleep. In certain cases the child is given medicine when he arrives to help
him sleep. Sometimes a longer tracing of the brain activity (lasting 24 to 72
hours) is necessary, so an ambulatory EEG is performed during the child’s
normal waking activities and sleep. The child is set up with the EEG and
then goes home. Sometimes a video-recording machine is used with this
test; this is called intensive video EEG monitoring. The child is admitted to the
hospital for this test. It is important to know that a child can have a normal
EEG (no seizure activity on the EEG) and still have epilepsy.
Brain-imaging techniques, such as computerized tomography (CT scan),
magnetic resonance imaging (MRI), positron emission tomography (PET scan),
and single photon emission computed tomography (SPECT scan) of the brain (to
name a few) may also be used. These tests give information about the struc-
ture and activity of the brain. The CT and MRI show physical structures of
the brain, whereas the PET and SPECT show metabolic activity in the brain.
In children who have both cerebral palsy and seizures, chances of Wnding an
abnormality on the test are increased. The most common abnormality is cor-
tical atrophy (or shrinkage) of the brain’s gray matter. No speciWc treatment
is available for most of the abnormalities that are found in a child with cere-
bral palsy.
The child’s health care provider may order various blood tests to deter-
mine the reason for your child’s problem. The type of blood tests ordered
depends on the child’s medical history.
What are the Seizures can be either partial seizures or generalized seizures. Partial seizures
diVerent kinds occur when the bursts of abnormal electrical activity are conWned to one
of seizures? part of the brain. The right side of the brain usually controls the left side of
the body, and the left side of the brain usually controls the right side of the
body. If the abnormal activity occurs in the right side of the brain, you may
see movement on the left side of the body. Partial seizures can cause motor
symptoms such as jerking, twitching, or shaking; somatosensory symptoms
such as a change in the way things look, sound, smell, or taste; autonomic
symptoms such as becoming pale or Xushed; or psychic symptoms such as
fear, anger, hallucinations, or déjà vu (reliving an experience one had in the
past). Sometimes after a partial seizure is over the child has a weakness of one
side of the body that can last up to 24 to 48 hours. This is called a Todd’s
paralysis.
A simple partial seizure occurs when the abnormal activity in the brain oc-
curs in one part of the brain but consciousness is not aVected. Therefore, the
person is aware during the event and can carry on a conversation, but they
cannot control the symptoms that occur.
Complex partial seizures, once known as psychomotor or temporal lobe
seizures, occur when the electrical activity in the brain occurs in one part of
the brain, but consciousness is also aVected. No complete loss of conscious-
ness occurs, however. Complex partial seizures can have all the same symp-
toms of simple partial seizures, but the child is also confused, disoriented, or
unresponsive. The child may hear you talk but cannot answer you. He or she
may be unable to follow directions. The child may move or wander around
and mumble. After the seizure is over, the child may be aware that the seizure
occurred or she may have no memory of the seizure.
An aura is a “warning” some people have before a seizure. It can be a
smell, feeling, visual change, and so on. This aura is usually a type of simple
partial seizure.
A generalized seizure occurs when the abnormal electrical activity in the
brain occurs over the whole brain all at one time. The entire body is aVected
equally (both sides) and there is a complete loss of consciousness. During
this type of seizure the child cannot talk or respond, is unaware of his/her
surroundings, and has no memory of the seizure afterward. There may be a
loss of bowel or bladder control during this type of seizure. There are many
types of generalized seizures.
Absence seizures, once known as “petit mal” seizures, occur for brief peri-
ods in which the child will suddenly stare and be unaware of her environ-
ment. The child is unable to talk or respond. There can be automatisms, such
as eye Xuttering or mouth movements. These seizures can last up to twenty
seconds. They interrupt a child’s concentration and can happen very often
(up to hundreds of times a day). The child always returns to her previous ac-
tivity after the seizure is over, without awareness of the seizure.
During a tonic seizure the child’s body gets rigid. He may have slight
tremors or Wne shaking. A postictal state can occur after this type of seizure.
This is a period of time where the child may sleep after the seizure is over.
Tonic-clonic seizures were once known as “grand mal” seizures. The child’s
body stiVens and then jerks in a rhythmic pattern. Breathing can become
shallow during this type of seizure. The child can go into a postictal state af-
ter this type of seizure also.
Myoclonic seizures are brief, very quick, forceful muscle jerks that the child
cannot control. They often involve the arm or face but may also involve the
whole body. A myoclonic seizure looks like a quick startle. These seizures are
not triggered by any type of event, such as a loud noise, light, or a sudden
movement.
Akinetic seizures are also known as drop attacks because the child suddenly
and forcefully drops to the ground. He then immediately gets back up. Chil-
dren who have these types of seizures may sustain head or face injuries from
the sudden fall, so it is recommended that they wear a helmet to lessen the
chance of injury.
Atonic seizures result in a sudden loss of muscle tone. The child suddenly
drops or “melts” to the ground and is limp for a period of time. Children
who have these types of seizures also may sustain head or face injuries from
the fall, so it is recommended that they wear a helmet to lessen the chance of
injury.
Infantile spasms are seen in children who are less than one year of age.
These spasms occur in clusters and are very quick. There are three diVerent
types of infantile spasms:
• Flexor spasms are abrupt Xexing or bending spasms of the neck, trunk,
arms, and legs. They are often called jack-knife seizures or salaam seizures.
The child looks as if she is suddenly bending in half.
• Extensor spasms are the least common. They are abrupt extension or
straightening spasms involving movement of the neck, trunk, arms, and
legs. They are often called cheerleader spasms.
• Mixed spasms are the most common. They usually include Xexion of the
neck, trunk, and arms and extension of the legs.
Seizures can spread from a simple partial seizure to a complex partial seizure
and then to a generalized seizure.
What can trigger Many things can trigger a seizure in a child who already has a seizure disor-
a seizure? der. Illness, especially when accompanied by fever, can cause an increase in
the number and severity of seizures. It is important to treat illness aggres-
sively as directed by your child’s health care provider. Lack of sleep can be a
triggering event for some people with seizures. If a child needs eight hours
of sleep a night, and then for one or two nights gets only Wve or six hours,
the child may have increased seizures. It is important for your child to get
adequate nightly sleep. Stress, which can result in a lack of sleep, can cause in-
creased seizures a day or so after the event. Stress can be good stress (Christ-
mas, birthdays, trip to the amusement park) or bad stress (death in the fam-
ily, divorce). It is not the actual stressful event that causes the seizures, but
rather the lack of sleep the child may get during this time. Certain sounds or
Xickering lights can be triggers for a small number of children with a certain
kind of epilepsy. Television, video games, and strobe lights are common
sources of Xickering lights.
These triggers are not the cause of seizures, but they can cause an increase
in the number and severity of seizures in a child who has epilepsy.
What is it like for It is very frightening for the parent or caregiver the Wrst time they see their
the parents or child have a seizure. They may think the child is going to die. The more ed-
caregivers when ucated parents are about seizures, the better they will respond. They should
their child is hav- be instructed that most seizures are over in less than Wve minutes. The health
ing a seizure? care provider will teach the family seizure precautions and Wrst aid for
seizures (discussed later). Most parents and caregivers eventually overcome
their anxiety about seizures. It is important for the parent and caregiver to
try to remain calm during the child’s seizure.
What is it like for The child may or may not be aware of the seizure, but she will not be able to
the child when she control the symptoms. During a simple partial seizure, the child will be
is having a aware of the seizure and have memory of the seizure after it is over. During
seizure? a complex partial seizure, the child may or may not be aware during the
seizure and may or may not have memory of the seizure when it is over. Dur-
ing a generalized seizure the child will have a total loss of consciousness and
will be unaware during the seizure, having no memory of the event once it
is over.
The seizure itself is not painful, but depending on what type of seizure the
child is having, the child may be injured. The child’s reaction after the seizure
is over will depend on how the people around him react during the seizure.
To help with the child’s anxiety about the seizure, it is best to teach the child
about his seizures and what they look like.
How are seizures There are various options for treatment of seizures. Pharmacological treat-
treated? ment consists of antiepileptic drugs (AEDs) and nonpharmacological treat-
ments consist of the ketogenic diet, the Vagal Nerve Stimulator (VNS), and
brain surgery. Some families have also elected to treat seizures with alterna-
tive therapies such as herbal preparations and supplements. The decision to
treat should be made after discussion with your child’s health care provider.
AEDs raise the seizure threshold by decreasing the electrical impulses of
the cells in the brain to try to stop the seizure from occurring or from spread-
ing. The primary goal of therapy is to have complete seizure control with no
medication side eVects. If this goal is not attainable, then the secondary goal
of therapy is to reduce the number of seizures, decrease the frequency of the
seizures, decrease the duration of the seizures, and decrease the side eVects
of the AEDs. There are numerous AEDs that your health care provider can
choose from when treating your child’s seizures. Each AED will have two
names. The drug company’s brand name for the drug is the trade name, and
the chemical name of the drug is the generic name. Your health care provider
will try to treat your child’s seizures with monotherapy, meaning the use of a
single AED. However, sometimes polytherapy, the use of several AEDs, is
necessary. For successful therapy, the AED should be taken properly by fol-
lowing the correct schedule and taking the correct dose. Your child should
continue on medication even when he becomes seizure free. Your child
should never stop taking AEDs abruptly, because this can possibly result in
sudden increased seizures, or even status epilepticus, a seizure that does not
stop. Your health care provider will provide you with further information
about the medication that your child will be taking.
Depending on the AED your child is taking, your child may need to get
blood levels checked. This is the measurement of the amount of the drug that
is in the body. It can take one to two weeks for the medication level to rise in
the blood and then level oV; this is called the steady state. AEDs have peaks
(the highest level in the blood) and troughs (the lowest level in the blood).
Drug levels are usually drawn as trough levels, Wrst thing in the morning be-
fore the morning dose of medication. Peak levels are drawn when side eVects
are a problem for the child. The therapeutic range is the range of the level of
the AED in the blood, determined during drug trials, that gave the majority
of people good seizure control with minimal side eVects. Your child’s med-
ication dose may be changed depending on the result of the blood levels.
The Ketogenic Diet is a special diet that is used to try to gain improved
seizure control. The diet is high in fat and low in carbohydrates and protein
combined. The diet keeps the body in a fastlike state that makes the body
burn fat for energy, instead of sugar. The diet also keeps the body in a par-
tially dehydrated state by limiting Xuid intake. A neurologist and dietitian who
are well educated in the diet must manage the ketogenic diet. You should never
attempt to try this diet on your own without the help of these professionals.
The Vagal Nerve Stimulator (VNS) can also be used to try to control
seizures. This is a small device that is surgically placed under the skin in the
left chest area with wires that thread under the skin to the vagus nerve in the
left neck area. The vagus nerve is a link to the brain. When this nerve is stim-
ulated by the device, it stimulates the base of the brain and sometimes can
help to control seizures. The device stimulates the vagus nerve at preset in-
tervals throughout the day. The family is also given a special, very strong
magnet that they can pass over the device in the chest to give an extra “dose”
of stimulation to prevent or stop a seizure.
Brain surgery is performed in some people when all other methods fail.
The individual must have a focus or a speciWc spot from which the seizures
originate. Brain surgery involves removing the part of the brain identiWed as
the area that is producing the seizures.
More people are using alternative therapies, such as herbal preparations and
supplements, to treat medical problems. A number of herbs have been labeled
as being eVective in controlling seizures; however, none are recommended

for use in children. An important fact to keep in mind is that herbal prepa-
rations and supplements are also medications, and as such they have poten-
tial side eVects. These preparations can interact with the body and with other
medications the individual may already be taking.
What are the Wrst The main things to remember in any seizure are to prevent injury to the child
aid procedures for and to monitor the seizure. It is important to remain with the child dur-
seizures? ing the seizure. It is also important to make the environment safe during a
seizure by moving sharp objects and furniture out of the way if possible.
Once the seizure is over, do not rush your child to stand up, walk, drink, or
eat something until he is fully awake.
For generalized seizures:
• Stay with the child during the seizure.
• Gently lower the child to the Xoor, if she is not already there.
• Position the child on her side.
• Support the child’s head so it is in straight alignment with her body. You
can use a jacket, towel, small pillow, or your hand to do this.
• Do not put anything into the child’s mouth (including a Wnger or hard
object).
• Loosen any tight clothing around the neck, chest, and abdomen.
• Do not restrain the child.
• Move furniture and sharp objects away from the child, if possible.
For complex partial seizures:

• Stay with the child during the seizure.
• Speak softly.
• If the child is walking, place your hands on the child’s shoulders from be-
hind and gently guide the child away from a dangerous situation.
• If the seizure spreads to a generalized seizure, follow the Wrst aid guide-
lines for a generalized seizure.
Once the seizure is over, the child may sleep for a period of time. Once he is
awake, the child can resume his previous activity.
For absence seizures:
• Stay with the child.
• Reorient the child to his surroundings after the seizure is over.
Sometimes when a seizure starts, there is no way to stop it without spe-

cial medications. Many physicians recommend giving Diastat rectally if a
child has a seizure that lasts Wve minutes or longer. This is valium that is pre-
measured in a rectal syringe. This medication usually stops a seizure within

Wve to ten minutes of giving the medication. If the seizure does not stop with
Diastat, if a seizure lasts longer than Wve minutes and you don’t have Diastat to
give, if seizures occur one right after another, or if your child has breathing diY-
culties once on his side, call 911, or emergency services in your area.
What are some To keep your child safe, some precautions are necessary for the child with
important seizure seizures. You must be very careful with your child around water. Your child
precautions? should take showers instead of baths, if she is able and old enough. Be sure
your bathtub drain works well. If your child is taking a bath, you must be
present and watching at all times to prevent drowning if a seizure occurs.
Your child should not lock the bathroom door or take a shower or bath
when she is home alone. Your child must be watched at all times with one-
to-one supervision by an adult when swimming. If a seizure occurs while the
child is in the water swimming, the adult can get the child out of the water
immediately. Contact your health care provider if a seizure occurs while your
child is in the water.
If your child’s seizures are not controlled, he should not be climbing in
high places. If going on amusement park rides, your child must be securely
strapped into the ride and should not go alone. If your child is playing on
park equipment, be sure there is soft ground beneath and appropriate adult
supervision.
When cooking at home be sure the pot and pan handles are turned in-
ward, to the center of the stove. If your child is near the stove, be sure some-
one is present. If your child is at a campWre or bonWre, be sure she is far
enough away from the Wre so if she had a seizure, she would not fall into
the Wre.
If your child’s seizures are not controlled he should not be near or use
electrical or mechanical equipment. If using this equipment, an adult should
be present at all times.
If your child rides a horse, he must wear a helmet at all times. Check with
your health care provider before you allow your child on a horse. When bike
riding or skating, your child should wear a helmet at all times and not bike
or skate on busy streets.
If there is an activity your child would like to do other than what is dis-
cussed here, and you are not sure if he should be allowed to do it, check with
your health care provider.
Where can I get You can get further information about your child’s seizures from your child’s
further informa- health care provider or neurologist. You can also obtain further information
tion about about epilepsy and your child’s seizures by contacting the Epilepsy Founda-
seizures? tion of America (EFA) at 1-800-332-1000. They will be able to tell you how to
contact the local chapter of the EFA in your area. You can also look in the
phone book for the local EFA chapter.
Mental Retardation, Learning Disabilities, and ADHD

I’ve heard the Developmental delay is a descriptive term that refers to a lag in developmen-
term “develop- tal milestones in an infant or young child. This delay could be in just one area
mental delay” of development, such as motor skills, as in a child with cerebral palsy, or lan-
used. What does guage skills, as in a child who has a hearing deWcit. Alternatively, there could
it mean? be a delay in all areas of development, including gross and Wne motor skills,
language, and social-adaptive development. If such a global developmental
delay persists beyond age 4 and is conWrmed by formal psychological test-
ing, it is called mental retardation.
What is mental Mental retardation is below average intellectual functioning as measured

retardation? on a standard test of intelligence. It reXects deWcits in both cognitive func-
tioning, otherwise known as thinking skills, and adaptive behavior, or
one’s ability to adapt to the environment. Average intellectual functioning
is measured by an IQ of 100; mental retardation is deWned as having an IQ
below 70.
What are the There are four categories of mental retardation. They are: (1) mild mental re-
diVerent catego- tardation, deWned as an IQ between 55 and 69; (2) moderate mental retarda-
ries of mental tion, deWned as an IQ between 40 and 54; (3) severe mental retardation,
retardation? deWned as an IQ between 25 and 39; and (4) profound mental retardation,
deWned as an IQ below 25. Someone with mild mental retardation is con-
sidered to be an educable mentally retarded person, and someone who has
moderate mental retardation is considered to be a trainable mentally re-
tarded person.
What are the People with severe or profound mental retardation (about 5 percent of the
implications of mentally retarded population) cannot function outside of the home. That is,
these categories? they cannot hold a job or live independently, and they need lifelong super-
vision by their families or an institution. Those with moderate mental retar-
dation (about 10 percent of the retarded population) can be trained to do a
job while under supervision (usually a repetitive, unskilled task). They can
care for themselves with supervision and are often able to live in a group
home with supervision. Those with mild mental retardation (85 percent of
the retarded population) can live independently. Eighty percent of them
hold jobs that don’t require high intellectual functioning, and can live inde-
pendently. More than 80 percent of these individuals are married.
What are the There are many possible causes, including all the factors that can cause brain
causes of mental damage of any sort. They include (1) factors that are present prior to or
retardation? at the time of conception, such as genetic disorders, brain malformation, or
metabolic disorders; (2) factors that aVect the developing brain during
pregnancy, such as alcohol, infections such as rubella (German measles), and
malnutrition of the fetus caused by medical illness of the mother; (3) factors
at the time of delivery, such as poor oxygenation of the brain, trauma, or in-
fection; and (4) factors aVecting the young child, such as lead intoxica-
tion, severe nutritional deWciencies, infections such as meningitis, and trauma
from an automobile accident or child abuse. For more than 60 percent of
people who have mental retardation, no cause can be identiWed.
Is there a diVer- Yes, there is a diVerence. Mental retardation implies an impairment of cog-
ence between men- nitive and adaptive functioning, or a limitation of intellectual capabilities.
tal retardation Cerebral palsy implies an impairment of motor function, meaning that use
and cerebral of the muscles in the arms or legs is impaired. Someone can have CP and
palsy? have normal intelligence, and someone can have mental retardation but have
no physical impairment. Mental retardation and CP do not necessarily go
together, but mental retardation and cerebral palsy often occur together.
Approximately two-thirds of people with cerebral palsy have mental re-
tardation. One-third of children with CP have mild mental retardation, one-
third have moderate to severe mental retardation, and one-third have a nor-
mal IQ. Children with spastic quadriplegia are more likely to have mental
retardation than those with hemiplegia or diplegia. Even children with CP
who have normal intelligence, however, are at risk for learning disabilities or
attention deWcit disorders.
What is a learn- By deWnition, children with learning disabilities have normal intelligence
ing disability? but have an impairment or disorder in one or more of the psychological
processes involved in understanding or using written or spoken language.
As a result, their ability to listen, think, speak, read, write, spell, or do
mathematical calculations is impaired. This means that, despite normal
cognitive potential, there is an interference in learning abilities in subjects
such as reading, writing, or mathematics or in the skills necessary for aca-
demic performance such as thinking, listening, and speaking. This interfer-
ence is due to a dysfunction of the central nervous system. Learning prob-
lems are often caused by perceptual diYculties or a diYculty in processing
information.
What is attention Attention deWcit–hyperactivity disorder (ADHD) is a disorder of the execu-

deWcit– tive function of the brain that allows a person to focus and organize. It is a
hyperactivity developmental disability that occurs in approximately 3 to 5 percent of chil-
disorder? dren overall, but it is more common in children who have CP (or any other
disorder of the brain) and in children who were born prematurely. It is char-
acterized by inattention, distractibility, and impulsivity, and it interferes
with learning in the classroom and results in low academic achievement.
There are three major types of ADHD: predominantly inattentive type,
predominantly hyperactive-impulsive type, and the combined type. Some-
times, however, these symptoms are a side eVect of a medication the child
is taking (such as phenobarbital), a learning disability, anxiety, depression,

or neglect.
Children with ADHD may Wdget with their hands or feet when sitting,
have diYculty remaining seated, be easily distracted, have diYculty waiting
for their turn in a game, or have diYculty playing quietly. In the classroom
they may talk excessively, blurt out answers to questions before the question
has been completed, have a hard time following through on instructions, or
fail to Wnish chores. They may shift from one uncompleted task to another,
frequently lose things necessary for tests or activities at school or home, and
engage in physically dangerous activities because they have not considered
the possible consequences.
Many children with ADHD have poor social skills, resulting in diYcul-
ties making friends, playing with others, and sticking to the rules while play-
ing games. In the classroom they may act out and become the class clown be-
cause they aren’t able to pay attention to the teacher and to the work at hand.
They may be singled out as disruptive or lazy, and this may lead to feelings
of low self-esteem. Similar problems can occur in the family setting, as the
child’s poor social skills interfere with interactions in the home.
How are learning The major focus of the treatment is to ensure that the child gets into the
disabilities proper educational environment. Appropriate management of learning dis-
treated? abilities includes a comprehensive, coordinated approach to educational,
parental, and child issues. Parents and teachers must not incorrectly perceive
the child as lazy, stubborn, or incorrigible. Developing a thorough under-
standing of the child’s learning abilities and disabilities, as well as an educa-
tional program devised to match the child’s speciWc learning style, is of para-
mount importance.
How is attention ModiWcation of the learning environment is the primary treatment. The op-
deWcit– timal setting is a highly structured environment with minimal distractions
hyperactivity and a considerable amount of small group or one-on-one instruction. To
disorder treated? help the child manage organizational diYculties, she or he can be taught
management techniques such as regular daily routines at home and in the
classroom; short, concentrated work periods; and the use of calendars and
communication books.
Many children with ADHD may also be treated with medications. Ap-
proximately 80 percent of children with ADHD will respond dramatically
to stimulant medications. These include methylphenidate (Ritalin) and its
long-acting forms, such as Concerta, and dextroamphetamine (Dexedrine)
and Adderall (which is a mixture of amphetamines and includes a long-
acting form). Other drugs, such as atomoxetine (Strattera) and other classes
of medications in addition to stimulants also may prove beneWcial. How-
ever, medication alone is not suYcient. While the medications help improve
the attention level and decrease the impulsivity of many children, the child
with ADHD continues to face many social and learning problems. Teaching
him speciWc learning strategies to address learning diYculties and counsel-
ing the parents and teachers to help shape more appropriate behavior are
important parts of management. An individualized educational program is
vital for the child with ADHD or learning disabilities.
What are the sig- Many children show signs of insomnia (diYculty in getting to sleep) and de-
niWcant side eVects creased appetite, with resultant mild growth delay. In addition, some chil-
of stimulant med- dren develop a tic—a rapid, repetitive, stereotyped movement. While it is
ications? not believed that the medication causes tics, the medication may hasten the
appearance of a tic that was going to appear later. The appearance of tics may
be a reason to discontinue the stimulant medication. There is concern that
the stimulant medication might lower the seizure threshold in children with
seizure disorders and result in worse seizure control.
Hydrocephalus
What is hydro- Hydrocephalus is an enlargement of the Xuid-Wlled spaces in and around the
cephalus? brain known as ventricles, combined with signs and symptoms of increased
intracranial pressure. It is caused by an imbalance in the production and ab-
sorption of cerebrospinal Xuid (CSF), usually brought about by blockage in
the normal circulation of this Xuid. If the normal Xow of CSF is blocked, the
Xuid backs up into the ventricles of the brain. The brain continues to pro-
duce CSF, however, causing the ventricles to enlarge and put pressure on the
brain. Unless this pressure is treated, brain damage can result.
What conditions Sometimes the channel through which CSF normally passes from the third
cause hydro- ventricle to the fourth is not properly formed. This is called aqueductal steno-
cephalus? sis. Sometimes tumors or congenital malformations block the outXow of
CSF. There is also a form of hydrocephalus that results when the CSF is
blocked from being reabsorbed. This can result from meningitis, trauma, or
bleeding within the ventricles of the brain (this bleeding, called intraventric-
ular hemorrhage, is a common cause of hydrocephalus in premature infants).
How is hydro- To correct the damaging eVects of the Xuid buildup, a surgical procedure is
cephalus treated? performed involving placement of a shunt. A shunt is a tube; one end of the
shunt is inserted into the ventricles in the head, and the other end is inserted
into another cavity in the body. The purpose of the shunt is to bypass the ob-
struction and drain the cerebral spinal Xuid into a place where the body can
dispose of it.
The most commonly used body cavity is the peritoneal cavity, the space in-
side the abdomen. This space can accept the daily Xuid production and ab-
sorb it. This shunt is called a ventriculo-peritoneal shunt, or V-P shunt. A less
commonly used option is to insert the shunt into the jugular vein or right
atrium to allow Xuid to drain into the bloodstream. These are known as ven-
triculojugular shunts or ventriculoatrial shunts. Another option is the place-
ment of the shunt tube into the pleural spaces around the lungs. This is called
a ventriculopleural shunt.
Another option for the treatment of hydrocephalus is to perform an en-
doscopic third ventriculostomy. This procedure creates an internal bypass,
allowing the Xuid to escape the third ventricle. It is utilized in obstructive
forms of hydrocephalus.
How is the shunt A shunt is implanted during a surgical procedure performed under general
inserted? anesthesia. This procedure is well tolerated and can be performed even on
newborn babies. Once the anesthesia takes eVect, a small incision is made in
the scalp and a small hole is made through the skull. The shunt tubing is in-
serted into the ventricles; for a VP shunt, tubing is then tunneled under the
skin until it comes out through the incision in the abdomen, where it is in-
serted into the peritoneal cavity.
A valve is usually connected internally, within the tubing, with a small,
bubble-like dome in the valve which allows the functioning of the shunt to
be assessed periodically. This dome can be accessed to provide information
about the function of the shunt. It can also allow us to measure the intracra-
nial pressure and to remove spinal Xuid. There is little reason to “pump” a
shunt, because pumping has not been shown to provide any useful infor-
mation and has been associated with shunt malfunction.
What are the pos- Sometimes shunts become clogged. When this occurs, the shunt has to be
sible complications surgically repaired or replaced. Symptoms of shunt obstruction include per-
from a shunt? sistent headaches and vomiting as well as changes in mental status or in-
creased irritability. A shunt can also become infected. Infection may remain
conWned to the shunt tubing itself, but infection can spread into the nervous
system, causing meningitis (infection and inXammation of the meninges, or
membranes that surround the brain), which is a serious condition that needs
to be recognized and treated promptly.
Even with the most advanced technology, shunts are prone to prob-
lems, and it is likely that one or more surgical revisions will be performed
following the initial placement of a shunt. About 50 percent of shunts will
fail within two years, and more than 90 percent will fail within Wve years of
insertion.
Behavioral Issues
What are self- Self-injurious behaviors, also called SIB, are repetitious and chronic behav-
injurious iors that a person inXicts upon himself or herself in order to cause physi-
behaviors? cal harm. Some common forms of SIB include biting oneself; pinching,
scratching, or pulling on a body part; striking oneself (head banging or face
slapping); repeated vomiting or rumination (self-induced vomiting); and

severe pica (eating nonedible substances such as paint chips or dirt).
Many of these behaviors can be seen in the course of normal develop-
ment in up to 20 percent of infants and preschool children. Such behaviors
as body rocking, head rolling, and head banging often appear at around 8 to
9 months of age and disappear under normal circumstances by age 4. These
behaviors almost always disappear as the child develops more sophisticated
means of communication and stimulation.
Do these behaviors In people with developmental disabilities, such behaviors may persist for
ever persist? long periods and can result in serious tissue damage. Self-injurious behav-
iors that cause tissue damage have been described in 3 to 4 percent of chil-
dren under 10 who have developmental disabilities, in 8 percent of 10- to 15-
year-olds with developmental disabilities, and in 12 percent of people over 15
with developmental disabilities. This behavior is most common in people
with severe or profound mental retardation.
There are speciWc but rare disorders that are associated with such be-
haviors, especially the Lesch-Nyhan syndrome, which is caused by a gene mu-
tation resulting in a speciWc enzyme deWciency. In the typical patient with
cerebral palsy and severe mental retardation, these behaviors may start as
self-stimulatory activities and may then be reinforced because they attract
the attention of parents and caregivers.
I’ve heard of Behavior management strategies are the primary treatment strategies for
behavior man- children with SIB. They may be used in conjunction with education and
agement as a treatment with drugs. The key to any behavioral program is positive rein-
treatment for SIB. forcement for desired behaviors. Reinforcement increases the likelihood
How does it work? that the desired behaviors will occur and decreases the likelihood that the
undesired behaviors will occur.
All too often, parents and other adults respond only when the child does
something “wrong.” This reaction, even if a scolding, may represent the at-
tention that the child wants, and as a result the child will repeat the behavior
to get more attention. In contrast, when a child is playing quietly by himself,
a parent often chooses that moment to do a chore or make a phone call, and
as a consequence the child receives no attention or reward for this “good”
behavior.
In a behavior modiWcation program, good behavior is rewarded, either
with verbal feedback (“Johnny, I’m so glad to see you playing nicely with
your sister”) or with a concrete reward, like an ice cream cone or permission
to watch a special show on television. Alternatively, this positive reinforce-
ment might come in the form of a token that can later be traded for a desired
reward. Negative reinforcement, on the other hand, is lack of reward for
poor behavior. A child who is having a temper tantrum should be ignored
(not rewarded with attention) as long as he is not hurting himself. If a child
is banging his head, the parent may need to move him to a carpeted Xoor,
but the parent should do as little, and react as little, as possible.
Aside from behav- Behavior modiWcation is sometimes not eVective in treating SIB, especially
ior modiWcation, when the behavior is maintained by internal cues rather than by social rein-
what else can be forcement. A variety of medications have been used to treat SIB with vary-
done to manage ing success. Some drugs commonly used to treat other conditions have been
SIB? used with some success in this disorder including oral medications and ap-
plication of a local anesthetic cream. It is sometimes necessary for a person
to wear protective equipment to protect him or herself from further injury.
Such protective equipment should be used as part of a program designed
to increase adaptive behavior. For instance, helmets can be used to protect
the head when head banging or head hitting is likely to occur. Elbow splints
can be used to keep the person’s arms extended and prevent head hitting,
eye gouging, and hand biting. Gloves, padded clothing, and goggles can
also be used.
Another treatment of SIB is more controversial than protective equip-
ment. This is the application of aversive stimuli such as bitter substances, wa-
ter mist, or mild electric shock to the skin. These stimuli are sometimes used
when the person’s behavior has not responded to other, conventional treat-
ments and the person is at high risk for injury from the behavior. This ap-
proach should be reserved for only the most serious situations and used only
after the techniques have received approval from an outside agency or advi-
sory panel not directly involved in the care of the child.
Besides SIB, what Children with CP (or any neurological impairment) may be more prone to
other behavioral having problems controlling their impulses, as well as having diYculties
concerns may arise with focus and attention that may have an impact on language, learning, and
in children with developmental progress. A thorough evaluation by a mental health profes-
CP? sional (psychologist or clinical social worker) may be helpful in assessing the
child’s behavior in the context of overall intellectual functioning, individual
temperament, and parent-child interaction.
How can such The Wrst strategy is to structure the environment based on the child’s de-
behavior be velopmental abilities. This means setting consistent limits at home and at
managed? school and using rewards that have meaning for that particular child. There
are children who require medication to help regulate their behaviors, be-
cause they are at risk of doing harm to themselves or others, or they are
missing opportunities for developmental growth because of their attention
diYculties. As previously discussed, stimulant medications are utilized to
maximize focus (and often decrease hyperactivity) by stimulating that area
of the brain that helps in attention regulation. Other classes of medications
act as mood stabilizers, helping to modulate a child’s reaction to his envi-
ronment, while others can be used to prevent outbursts or impulsive behav-
ior that could result in harm, as well as stimulate social awareness of conse-
quences to actions. The use of medications for behavior management needs
to be individualized, and needs to be discussed with a physician familiar
with their use in children with developmental disabilities. Not all medica-
tion used for behavior management in adults can or should be used in young
children, because of diVerent side eVect proWles. The goal should always be
judicious use of medication to maximize developmental progress without
blunting the child’s personality and spontaneity.
Visual Impairment
What is the deW- The term blindness refers to complete impairment of vision, when the person
nition of visual sees no light whatsoever. Visual impairment refers to diminished vision (or
impairment and “low vision”) but not total blindness. A child with visual impairment, who
blindness? can be described as partially sighted, has visual acuity that is better than
20/200 without eyeglasses but worse than 20/70 even with correction (eye-
glasses).
Legal blindness is deWned as a visual acuity of 20/200 or less in the better
eye after the best possible correction, or a visual Weld of 20 degrees or less.
This deWnition is used by the federal government and other agencies to de-
termine eligibility for federal programs such as SSI.
In terms of the educational system, a child with a visual impairment is
one whose visual limitations interfere with his ability to learn. There is no
speciWc level of visual impairment a child must have in order to qualify for
services. Usually, visual services for children can be obtained when visual
acuity is 20/60 or less.
What kind of Nearly half of all children with spastic cerebral palsy have an eye muscle im-
visual problems balance problem known as strabismus, commonly called “cross-eye.” Strabis-
do children with mus causes one of the eyes to turn outward or inward. Children who were
cerebral palsy born prematurely and were exposed to oxygen are at risk for developing
have? retinopathy of prematurity, a condition that in its severest form can cause
blindness in one or both eyes. Children with severe asphyxia (lack of oxy-
gen) may also suVer from blindness along with their other deWcits.
As many as 75 to 90 percent of children with CP may suVer from ambly-
opia (“lazy eye”), optic atrophy (a shrinking of the optic nerve due to damage),
nystagmus (jerking movements of the eye in a vertical or horizontal direc-
tion), visual Weld defects (loss of one side of the visual Weld) or refractive errors
(near- and farsightedness and astigmatism, or distorted or blurred vision).
What can be done
for children with Special educational techniques are vitally important to a child with severe
severe visual visual impairment. The child may need to attend a special class in a regular
impairment or school or may require special education throughout his or her educational
blindness? career, depending on whether visual impairment is the only disability or is
just one of several handicaps. If visual problems are accompanied by other

disabilities such as mental retardation, the visual impairment adds to the
burden on the child and makes education that much more diYcult. It is es-
timated that between 30 percent and 70 percent of children with severe vi-
sual impairment have other disabilities in addition to visual ones. Regardless
of visual acuity, any child with normal cognitive and social skills can legally
attend public school and expect to have the beneWt of appropriate visual and
educational aids. As discussed in Chapter 11, Public Law 94-142 requires that
states provide a free and appropriate education to all children, regardless of
their disability.
How is visual There are a number of ways to assess visual functioning in the newborn.
function assessed Optico-kinetic nystagmus is a reXex that is normally present in newborns, and
in the newborn? can help the pediatrician assess the pathways leading to the visual part of the
brain. A drum with alternating black and white lines is rotated in front of the
baby, with both of the baby’s eyes opened or one eye patched. A positive
reXex is seen when there are horizontal jerks in the eye as the eye tries to fol-
low and then pulls back, with the fast component being in the direction op-
posite to the rotation. This reXex can be seen in premature babies as early as
30 weeks’ gestation (born after 30 weeks in the womb).
Other aspects of visual function can be measured by a baby’s blink re-
sponse to light, which develops at approximately 25 weeks’ gestation. The
pupils constrict in response to light at 29 to 31 weeks’ gestation. Some dis-
criminatory visual function appears by 31 to 32 weeks’ gestational age. Tests
using preferential looking (where the baby chooses to focus on a more inter-
esting or more appealing picture) can estimate the actual visual acuity of a
newborn.
Visual-evoked potential (VEP) or visual evoked response (VER) have also
been used to assess the integrity of the entire system up to the cortex, but
their usefulness is limited because the exact site in the brain where the ab-
normal response occurs cannot be determined. A visual-evoked potential is
an electroencephalogram used in combination with a computer to assess the
brain’s response to visual stimuli such as a Xashing light, or a checkerboard
pattern. To test vision, the baby’s responses are compared with those of chil-
dren known to have normal vision.
How is visual There are two basic kinds of vision tests, those that require minimal cooper-
function assessed ation and those that require active participation by the child. In young chil-
in young dren, Allen cards and the illiterate E game are the vision tests most com-
children? monly used. Allen cards are cards printed with objects familiar to children
(such as a teddy bear, a telephone, or a birthday cake), and designed for use
at 20 feet or less. The child is asked to identify the pictures on the cards. In
the E game, the letter E is presented in diVerent directions and the child is
instructed to mimic the direction by pointing his or her hand or arm. In chil-
dren who are a bit older and know the alphabet, the Snellen letters remain
the standard test, using a chart with nine lines of letters measuring acuity
from 20/10 to 20/200.
When should my A child with cerebral palsy, just like any other child, should have his or
child’s eyes Wrst be her eyes examined when there is any deviation from normal. Deviations
tested, and how include crossed eyes, roving eyes, or an abnormal appearance of the eyes.
often should they The examination is initially done by the primary care physician; if an abnor-
be examined after mality is conWrmed, the child is usually referred to an eye specialist—the
that? ophthalmologist.
For children with signiWcant physical risks, such as infants with a very low
birthweight who were exposed to oxygen, the initial eye exam is usually
done in the nursery by an ophthalmologist. Except for these children, who
continue to see an ophthalmologist, children with cerebral palsy can be eval-
uated routinely by their primary care physicians at each visit and can be re-
ferred to an ophthalmologist if an abnormality is noted.
The exam should include an evaluation of the way the eyes move (speci-
Wcally looking for crossing of the eyes) and a sense of visual acuity, that is,
how well the child is seeing and following with his or her eyes. If the child
is referred to an ophthalmologist, the ophthalmologist will dilate the pupil
with eye drops in order to examine for refractive errors (farsightedness, near-
sightedness, or astigmatism) and to evaluate the retina and internal struc-
tures of the eye. The dilated pupil evaluation will also help in evaluation of
amblyopia (“lazy eye”).
How is strabismus There are three goals for any child with cross-eye. These goals are the same
treated? regardless of whether the child has cerebral palsy or not. They are: (1) good
and equal visual acuity in each eye, (2) ocular alignment (meaning getting
the eyes straight, both for cosmetic reasons and for functional reasons), and
(3) being able to use both eyes together. Strabismus is normally treated by
correcting the visual acuity in each eye, either with glasses or by patching.
If a signiWcant strabismus remains even after these therapies, then surgery is
indicated.
What is the Operations for strabismus are done under general anesthesia in an operating
surgery for room. The eye muscles are either tightened or loosened. The main risk to a
strabismus? child from this operation is the anesthetic one. The complications of the op-
eration itself are exceedingly rare and primarily involve infection. The most
common complication is either incomplete or overcorrection of the crossed
eyes. Approximately 70 to 75 percent of children respond to the initial sur-
gical intervention with good alignment of their eyes, but one out of every
four or Wve children requires more than one surgical procedure. For this rea-
son, if there is any possibility that nonsurgical treatment such as glasses or
patching will work, then these are tried Wrst.
What are the For a person to be able to see, several things must occur. First, the person
diVerent forms of must have a clear optical structure, meaning that there are no cataracts or
blindness, and opacities (conditions that block light) that obstruct vision of the eye itself.
which ones do chil- Second, the person must be able to focus on an object, which sometimes
dren with CP requires wearing corrective glasses. Third, the person’s eye must be able to
have? pick up the light and transfer it into energy to send the image to the brain.
The retina picks up the light and transfers this light stimulus to the optic
nerve, which then conducts the nerve impulse to the back of the brain. Fi-
nally, the back of the brain, speciWcally the occipital lobe, must translate
these electrical impulses into visual stimuli, which are then interpreted by
the brain.
In optic nerve atrophy, the third process described above is impaired.
That is, the optic nerve itself is injured and the light image cannot get from
the eye to the brain. In cortical blindness, the ocular apparatus (the eye,
retina, and nerve) is normal but the part of the brain which should pick up
the visual stimuli is not working properly and cannot convert the electrical
energy into a visual image. In children with cerebral palsy, blindness can be
a result of damage to the retina, the optic nerve, or the occipital lobe of the
brain. Premature infants who were exposed to oxygen may suVer a severe
form of retinopathy resulting in retinal detachment, which interferes with
the reception of light by the retina due to damage to the photoreceptor cells,
and obstructs transmission of light to the optic nerve. Other children with
cerebral palsy may have suVered lack of oxygen or blood supply at birth or
in the months thereafter, resulting in damage either to the optic nerve or to
the occipital area of the brain—or both.
Can head bang- Repeated trauma from severe head banging can lead to a tear in the thin reti-
ing or rubbing the nal surface, which will allow the membrane to detach. Once the retina is de-
eyes cause tached, it starves from lack of nutrients from its blood supply and rapidly de-
blindness? generates. This process leads to blindness if not corrected quickly. For this
reason, retinal detachment needs to be diagnosed and repaired promptly.
It is rare for permanent damage to occur from eye rubbing, however.
While conjunctivitis and recurrent eye infections can be caused by constant
rubbing, especially when dirt is introduced into the eye from the child’s
hands, eye rubbing will not cause blindness. It is common for children who
have poor vision or who are blind to rub their eyes as a stimulating tactic
(known as “blindism”). If the cornea of the eye gets scratched and an infec-
tion results, then the cornea can form an ulcer and deep scarring can occur.
Hearing Impairment and Otitis Media

Should my child Severe to profound hearing loss aVects 1 or 2 out of every 1,000 children. In-
be screened for herited factors are thought to account for approximately 30 percent to 50
hearing problems? percent of children with hearing loss. Approximately 25 percent of child-
hood hearing loss is thought to result from environmental causes; in another

25 percent the cause is unclear. Approximately 15 percent of children with
cerebral palsy have a hearing impairment.
The key to early detection of hearing problems is identifying children at
high risk, including those with any of the following risk factors: (1) a family
history of childhood hearing impairment, (2) congenital infections, (3) mal-
formations that involve the head and neck, (4) a birthweight under 1,500
grams (3 lb. 5 oz.), (5) bacterial meningitis, (6) jaundice, or (7) severe as-
phyxia. Even when none of these risk factors is present, parents should
bring any concerns regarding their child’s hearing to the attention of their
primary care physician. If the child does not act startled or turn his or her
head toward loud noises, the physician may want to screen the child or rec-
ommend a more formal hearing test by an audiologist. Any failure of a new-
born to “pass” a screening test for hearing should be pursued with the child’s
physician.
How is hearing The most commonly used test, the behavioral audiogram, is usually adminis-
tested? tered by a well-trained pediatric audiologist who during the test will ask the
child to respond directly to word or sound cues. For an infant younger than
6 months, hearing is gauged by observing the infant’s responses to sounds
of various intensities and frequencies—responses such as widening her eyes,
blinking, becoming quiet as she pays attention, or turning her head.
From 6 to 24 months, a visual re-enforcer, known as visual re-enforced au-
diometry, can be used to test hearing. In this approach, a Xashing light or an-
imated toy is used to re-enforce a response to sounds of controlled intensi-
ties and frequencies. When the child looks in the direction of a sound, a toy
or bright light is presented in the same place to encourage the child to look
again when he or she hears the sound. Between the ages of 2 and 5, children
are usually tested by a technique called conditioned play audiometry, where
they engage in a play activity such as putting a block in a box each time a
sound is heard.
A child who is developmentally delayed will be tested based on his devel-
opmental abilities rather than his chronological age. For children who can-
not cooperate or who give inconsistent responses, a brainstem auditory evoked
response (BAER) is often used. This is a type of EEG that establishes a thresh-
old of loudness below which the child cannot hear. Its limitations are that it
primarily tests high-frequency sounds, sedation is often required to admin-
ister it, and it is more expensive than other methods of testing hearing. An
additional method of objective hearing testing is to measure otoacoustic emis-
sions (OAE). These are sounds produced by the outer hair cells of the cochlea,
which can be measured in the ear canal. The ability to detect these sounds in-
dicates cochlear health and, in general, a normal hearing threshold. It is be-
ing used as a routine screening test for newborns in many nurseries.
What are the Hearing impairment is usually classiWed as one of two types, conductive or
diVerent types of sensorineural. Conductive hearing loss occurs when there is a problem in
hearing the outer or middle ear preventing sound from being conducted normally
impairment? into the inner ear and auditory nerve. Sensorineural hearing loss occurs
when there is damage to the inner ear or auditory nerve itself. If both con-
ductive and sensorineural hearing loss are present, the hearing loss is said to
be mixed.
How are the Hearing impairment ranges from slight to profound, based on the thresh-
diVerent degrees of old (the minimum loudness) of sounds that the child hears. Table 5 identi-
hearing impair- Wes the kinds of assistance that will prove beneWcial to people with various
ment classiWed? degrees of hearing impairment.
How are type and Once it is established that a child has a hearing loss, the next step is to deter-
degree of hearing mine the type and degree of hearing impairment. The degree is determined
loss determined in by testing and, as noted above, is described as a threshold at which sound is
children? heard. The type (conductive, sensorineural, or mixed) is assessed by meas-
uring middle ear pressure and eardrum mobility through a test called tym-
panometry. Hearing can also be tested using air conduction (the child wears
earphones, and sound is conducted down the ear canal to the middle ear) or
bone conduction (the sound is conducted to the middle ear by vibrations
against the skull).
Table 5 Ranges of Hearing Impairment

Level of Hearing Loss (Hz) Description Sounds Heard Possible Needs
15–25 dB Slight hearing loss Hears vowels clearly Preferential seating
25–40 dB Mild hearing loss Hears only some Hearing aid, lip
louder-voiced reading, auditory
speech sounds training, speech
therapy, FM system
40–65 dB Moderate hearing loss Misses most speech All of the above,
sounds at normal plus consideration
conversational level of special
classroom
situation
65–95 dB Severe hearing loss Hears no speech All of the above,

sounds of normal plus probable
conversation assignment to
special classes,
possible cochlear
implantation
More than 95 dB Profound hearing loss Hears no speech or All of the above,
other sounds plus probable
assignment to
special classes
How can children At the time of initial diagnosis a medical evaluation should look for under-
with hearing lying diseases, some of which may be treatable, as well as for genetic fac-
impairment tors, which may aVect other children in the family or future children. For
be helped? most children with conductive hearing loss, medical or surgical intervention
should restore most, if not all, of the hearing to normal. On the other hand,
a sensorineural hearing loss is rarely treatable, and the hearing loss is almost
always permanent. The child’s hearing impairment in this case is treated
through ampliWcation with a hearing aid. With a mixed hearing loss the con-
ductive impairment needs to be treated aggressively, so as to minimize the
hearing loss based on the sensorineural component.
Children of any age, even infants, can successfully use a hearing aid, which
is essentially a miniature public address system with a microphone (to pick
up the sound and amplify it to make the sound louder) and a loudspeaker (to
deliver the ampliWed sound to the ear). The two most commonly used hear-
ing aids in children are body-style hearing aids and behind-the-ear hearing
aids. Even with these devices, however, hearing is still far from perfect. Hear-
ing aids tend to amplify all sounds, including undesirable noises, and they
don’t clarify the sound; they simply amplify it.
For a child with a severe hearing impairment of the sensorineural type,
there is almost always some degree of language delay because so many of the
auditory cues and experience that are necessary to language development
have been missed. Even after diagnosis is made, learning continues to be a
struggle for many children, especially those with a more severe and pro-
found hearing loss. Most children with sensorineural hearing loss need the
beneWts of early intervention programs designed for children with hearing
impairments. In addition, special supportive services or special education
may be necessary throughout the school years, particularly for children who
have hearing impairment as part of a multihandicapping condition such as
cerebral palsy or mental retardation, or if they also have visual impairment.
In select children with severe to profound hearing loss, consideration can
be given to cochlear implantation. This is a surgical procedure in which a de-
vice is implanted into the deaf ear, allowing the hearing nerve to be directly
stimulated electrically. It can be done as early as 7 months of age but typically
is performed between 1 and 2 years of age. With intensive rehabilitation,
these children will often develop normal hearing thresholds and speech and
language on par with their peers. However, not all children with severe to
profound hearing loss are candidates for cochlear implantation, and for
them, alternative modes of communication must be developed, including
cued speech or American Sign Language. Unfortunately, sign language may
not be a practical option for a child whose CP aVects his hand functions.
What causes hear- By far the most common cause of conductive hearing impairment in chil-
ing loss? dren is middle ear disease or otitis media (middle ear infection). Other
causes include congenital malformations of the middle ear or obstruction of
the ear canal by cerumen (earwax). Sensorineural hearing impairment may

be present at birth; it may be inherited; or it may be caused by a maternal vi-
ral infection or a drug, particularly one ingested during the Wrst trimester
which interferes with the normal development of the inner ear. Acquired
causes include a lack of oxygen at some time, either during the birth process
or shortly afterward; head trauma; and other perinatal diYculties. Certain
medications, including some that may have been used in the newborn nurs-
ery, or high bilirubin levels (causing jaundice) may also cause hearing loss,
as can meningitis or mumps acquired later in life. Since many of these fac-
tors can also contribute to cerebral palsy, hearing impairment and cerebral
palsy are often found together.
What is otitis Otitis media is the medical term for a middle ear infection. It is a very com-
media? mon problem in children, second only to the common cold in frequency as
the reason for illness-related visits to the pediatrician. Risk factors for devel-
oping otitis media include going to sleep with a bottle, bottle as opposed to
breast-feeding, male gender, environmental smoke, paciWer use, and day care
attendance. Estimates are that more than 90 percent of all children have had
at least one such infection by age 5.
How is otitis Children with acute otitis media often complain of an earache. They may rub
media diagnosed? or tug at their ears, may have drainage from their ears, and may have a fever.
Sometimes none of these symptoms is present, however. Upon examination
with an otoscope (an instrument with a probe, a light, and a magnifying
lens) a physician sees a red, bulging, immobile eardrum. Such an infection is
commonly treated with antibiotics, even though some ear infections are
caused by viruses, in which case antibiotics are ineVective. The accepted ap-
proach is to treat acute otitis media with an antibiotic, since such infections
usually respond well to these medications. Fluid in the middle ear may per-
sist for weeks or even months following the acute infection. This persistent
Xuid collection, known as serous otitis media or otitis media with eVusion,
may make the child more susceptible to recurrent infections as well as to
hearing problems.
What is serous Serous otitis media is a chronic condition of the middle ear whose most ob-
otitis media? vious characteristic is Xuid in the middle ear. The condition usually results
from poor functioning of the eustachian tube. (The eustachian tube nor-
mally equalizes pressure between the middle ear and the atmosphere and
permits secretions to drain from the middle ear.) When this tube does not
work well or when it is blocked (most commonly when nasal tissues swell
due to a cold or an allergy), Xuid can accumulate in the middle ear.
If Xuid remains in the middle ear for a time, disease-producing bacteria
and viruses can cause an active infection leading to acute otitis media. Acute
otitis media itself is always accompanied by middle ear Xuid, and the Xuid in
the middle ear can persist long after the infection has been eVectively treated
with antibiotics. So serous otitis media can make a person more likely to de-
velop an acute ear infection, and an acute infection, even when treated, can
leave a person with serous otitis media.
How does serous While the degree of hearing loss from serous otitis media can vary from mild
otitis media aVect to severe, the mild to moderate range of impairment is most common. It can
hearing? cause obvious diYculty in hearing for a child who was hearing well before,
or even greater loss of function for a child who already had some hearing im-
pairment. Because serous otitis media is most common in children under 2
years of age, and because language takes shape during these Wrst years of life,
serous otitis media can interfere with the development of language, which is
dependent upon hearing. There have been concerns raised that serous otitis
media and hearing loss at this age can lead to long-term learning disabilities
in children of school age, but this position has not been proven.
What other com- One complication, known as mastoiditis, occurs when infection spreads from
plications of otitis the middle ear into the mastoid bone and the cells behind the ear. This con-
media are there? dition is sometimes treated successfully with antibiotics; sometimes suc-
cessful treatment requires an operation, however.
An acute infection of the middle ear can also lead to perforation of the
eardrum, which usually (but not always) will heal on its own. While perfo-
ration usually is not serious, it can lead to loss of function and to suscepti-
bility to the formation of cholesteatoma in the middle ear. Cholesteatoma is
a condition in which surface cells in the external auditory canal grow into
the middle ear space and form a tumor that can erode the small bones of
the middle ear. Rarely, acute otitis media can lead to meningitis, facial paral-
ysis, brain abscess, or labyrinthitis (inXammation of the structures of the
inner ear).
What is the treat- The standard treatment for acute otitis media is antibiotics, which are avail-
ment for acute oti- able in many forms. In most cases the doctor prescribes one of the antibiotics
tis media? that is eVective in combating the three or four bacteria known most com-
monly to infect the middle ear. In some cases, however, the doctor wants to
Wnd out exactly which bacterium is primarily responsible for the infection,
and in those cases he or she will insert a needle through the eardrum and ex-
tract a small amount of Xuid from the middle ear to grow a culture. The
choice of antibiotic prescribed in part depends upon the resistance of the
bacteria to a speciWc antibiotic in that part of the country, the cost of the an-
tibiotic, and the history of previous infections in that child.
What is the treat- Many medical treatments for serous otitis media have been tried, includ-
ment for serous ing steroids, antihistamines, and decongestants. None of these treatments
otitis media? has been shown to be very eVective, and even for children whose problem
seemed to get better, the condition recurred fairly quickly. Surgical treat-
ment is an option when serous otitis media is accompanied by hearing loss.
What about Recurrent otitis media is more diYcult to manage. It can be treated either
recurrent otitis with antibiotics or through a surgical procedure. Low doses of preventive
media? antibiotics (called prophylactic antibiotics) may be prescribed, especially
during the winter season when the incidence is highest. However, concern
about bacteria developing resistance to antibiotics that are used for a pro-
longed time has made this practice less common. Surgery involves the place-
ment of tympanostomy tubes in the eardrum, to allow continuous drainage
and provide for ventilation of the middle ear space.
What factors con- The child under age 2 years is the one who most often develops recurrent (or
tribute to the persistent) otitis media with eVusion (also called serous otitis media). The
development of risk factors for developing otitis media with eVusion include developing a
recurrent otitis Wrst episode of otitis before six months of age, as well as those mentioned for
media with otitis media (see page 69). Winter is the most common season for children
eVusion? to become infected.
When are tympa- Tubes are recommended when antibiotic treatment of recurrent otitis media
nostomy tubes has failed. For persistent eVusion, tubes are considered appropriate if the
used? eVusion is accompanied by hearing loss of at least 20 decibels and has lasted
for at least three to four months. However, because there are many diVerent
opinions about when tympanostomy tubes are called for, it’s best to consult
your child’s physician.
How are tympa- The procedure is formally known as a myringotomy, which is done under gen-
nostomy tubes eral anesthesia and is usually very brief, lasting approximately 10 minutes.
placed in the ear? This procedure can almost always be done on an outpatient basis, with the
child returning home once he or she has awakened and has recovered from
general anesthesia. Myringotomy tubes remain in place in the eardrum for 6
to 12 months, and usually fall out by themselves. They usually prevent middle
ear infection and accumulation of Xuid in the middle ear. When the tubes are
present, water must be prevented from entering the ear, since this can cause
an infection. Thus, care must be taken when the child is showering or swim-
ming, and ear plugs are often recommended. Tubes are sometimes replaced
after they fall out, if ear infections recur frequently after the tubes are no
longer there. Some children get ear infections even with the tubes in place.
Issues of Feeding and Nutrition

Does cerebral palsy For some children with cerebral palsy, growth is aVected. They are much
aVect height and smaller than their same-age friends who do not have CP. In some children,
weight? cerebral palsy aVects only weight; in other children, both weight and height.
This is especially true for children with spastic quadriplegia, and much less
true for those with hemiplegia or diplegia.
What causes this Several factors aVect the growth of the child with CP, and not all of them are
poor growth? clearly understood. Primarily, poor growth is caused by an inadequate in-
take of nutrition. In addition, there apparently are some neurological factors
that aVect growth, primarily on the basis of hormones that come from the
brain and that may be aVected by the brain damage that caused the CP.
What causes poor There are multiple factors that interfere with good nutrition in children
nutrition? most severely aVected by CP. Many children, especially those with spastic
quadriplegia, have pseudobulbar palsy, which means that the muscles of their
tongue and mouth are aVected by their CP. This interferes with the normal
coordination of chewing and swallowing, and it causes problems with drool-
ing and poor pronunciation, as well. Many children with this constellation
of problems also have a tongue thrust and a tonic bite, meaning that when
something is introduced into their mouth, their jaws clench shut and their
tongue pushes the food out instead of bringing it in and pushing it back to-
ward their throat.
All these factors make it diYcult for the child to receive adequate nour-
ishment and calories. Meals may take over an hour, with much of the food
still not ending up in the child’s stomach. These same abnormalities make it
diYcult to brush a child’s teeth, and so tooth decay and gum disease may de-
velop. These conditions may compound the problem by making chewing
food painful. In addition, many children with CP have tooth defects that
make chewing more diYcult.
What are the neu- Even when their nutritional deWciency is corrected, some children fail to
rological factors grow. This is especially true if the nutritional deWciencies are corrected later
that delay growth? in childhood rather than in the Wrst two or three years. While the neurolog-
ical factors are not clearly understood, it has long been thought that damage
to the brain aVects those areas that produce various hormones, including
growth hormone.
What can be done Since the underlying neurological cause will not improve, there is not much
to stimulate the that can be done for that aspect of the growth problem. However, there are
growth of a child various methods available to improve the nutritional intake of a child with
with CP? cerebral palsy. Sometimes a change in feeding technique is enough to im-
prove the situation. This might mean better seating (a more upright posture
will help some children) or special techniques, such as holding the jaw
forward. Other children might beneWt from a change in texture of the
food—for instance, many children with CP cannot swallow liquids or chew
solid food, but would do well with puréed foods. And for children who
simply cannot take large quantities of food, high-calorie supplements can
help them gain weight. This might mean very high calorie foods like butter,
cream, or milkshakes, or commercially available nutritional supplements. If

the child cannot be adequately fed by mouth, then a feeding tube may be
recommended.
How is growth The primary care physician should be measuring the height and weight of
evaluated for the the child with CP just as he or she would with any other child. For the child
child with CP? who is able to stand, a standing height is the most accurate. The doctor will
try to get the child to stand up as straight as possible. Weights should be
measured on the appropriate scale for the age of the child: an infant scale for
young children and a standard scale for older children. For the child who
cannot stand, a recumbent (lying down) length is measured from the top of
the head to the bottom of the foot with the ankle at 90 degrees. This mea-
surement can be done on a special length board or on an examining table or
bed. If a wheelchair scale is not available, the child’s weight may have to be
obtained with the parent holding the child. Growth charts show the normal
growth for children in the United States from birth through age 20. These
charts are divided into percentiles, which reXect the expected normal growth
over time. These percentiles range from the 3rd to the 97th percentile. Any-
one over the 97th percentile is overweight or unusually tall. A child who is
under the 3rd percentile is underweight or unusually short—although, by
deWnition, 3 percent of the normal population fall into this category.
How can a child Contractures make it impossible to stretch the legs out and make it nearly
who has contrac- impossible to obtain an accurate length. There are several alternate ways
tures of the hip, to obtain a child’s length. The forearm can be measured from the elbow to
foot, or ankle be the tip of the longest Wnger. Femur length can be measured from the hip to
measured? the knee. Tibia length can be measured from the top of the tibia to below the
anklebone and knee height can be measured from the top of the knee to
the bottom of the foot. All of these are height alternatives. Some, such as
tibia length and knee height, can be put into an equation to estimate height.
These values can then be plotted on a standard growth chart. For compari-
son over time the same method of measuring should be used each time, if
possible.
Are there other Triceps skinfold is a measurement of a child’s fat stores. Triceps skinfold is
ways to assess the helpful for monitoring a child’s nutritional status, especially if the child has
nutritional status a weight and length below the 3rd percentile. If the child has a skinfold mea-
of a child with surement within the normal range, this indicates good fat stores. The mea-
CP? surement is taken at the back of the upper arm at mid-point with a special
caliper. The value is compared to other children of the same age and gender.
This measurement can also be used to monitor nutritional status over time.
What if the child’s
weight is below the The growth of every child should be plotted on the growth chart during
third or Wfth the early years of life. A weight or height that is consistently slightly below
percentile? the 3rd or 5th percentile in a line parallel to the growth curve might simply
mean that the child is growing normally and Wts into the smallest 3 or 5
percent of the children his or her age. However, if the child is “falling
away from the curve,” meaning that he or she is dropping down in per-
centile, then the physician usually calls for further evaluation. Triceps
skinfold and weight for height ratios can also help determine whether fur-
ther evaluation is needed. If more intervention is needed, your doctor
may have you do a diet history, a blood test, x-rays, or some combination
of these. Usually the initial evaluation is primarily a nutritional one, since
the assumption is that a fall-oV in weight is primarily due to inadequate
nutrition.
If the problem is If the physician feels that a child’s fall-oV in weight or poor weight gain is
nutritional, what due to poor nutrition, then a detailed nutritional history is obtained. This
other evaluations may be done by the physician or by a nutritionist, who will determine the
are done? number of calories and amount of minerals, vitamins, and micronutrients
the child is getting compared to how many the child needs in order to grow
and be healthy. If the physician feels that the child is not getting suYcient
calories because of oral motor dysfunction (which includes poor chewing and
swallowing, tongue thrust, tonic bite), then an evaluation by an occupa-
tional or speech therapist may be recommended. This evaluation includes a
clinical visit, when the therapist watches the feeding of the child and tries to
detect special problems. It may also include a modiWed barium swallow, an
x-ray procedure that evaluates the ability of the child to eat and swallow food
safely. Recommendations by the therapist to help deal with these problems
might include better positioning or use of special techniques such as hold-
ing the jaw to help the child swallow better.
What does aspira- Aspiration is the process whereby food or secretions that are swallowed get
tion mean? into the lungs. Aspiration can result in chronic damage to the lungs. The
child with CP may aspirate food into the lungs due to a lack of coordination
in swallowing and lack of a protective gag reXex. Some children even aspi-
rate their own saliva. Many children who aspirate have no cough or gag re-
Xex and show no obvious response to the aspiration.
How will I know The symptoms of aspiration of food may include coughing, gagging, or
if my child is choking while eating, or having diYculty breathing while eating. Some chil-
aspirating? dren aspirate without showing any of these symptoms, however, because
they have no gag reXex and the food is getting into the lungs without pro-
ducing any symptoms. Aspiration is suspected in such cases when the child
suVers from repeated episodes of pneumonia. This is called an aspiration
pneumonia, and it should alert the physician to the possibility that the child
is aspirating. Aspiration could be due to problems with swallowing or due
to gastroesophageal reXux (when food comes back up the esophagus after
having gone down; see page 77).
Are there any tests A regular chest x-ray might show “dirty lungs,” a sign of chronic aspiration,
that indicate but the cause is not clear from a chest x-ray alone. The test that provides
whether my child information about the child’s swallow and evidence of aspiration is the
is aspirating? modiWed barium swallow. This test is done by a radiologist, usually with a
speech or occupational therapist present to feed the child diVerent textures
to see how he swallows. Having a parent present is also helpful to try to feed
the child in the usual manner. In this test, the child is fed the way he is nor-
mally fed at home or at school, but a liquid metallic element known as
barium is mixed into food of diVerent consistencies, usually liquids, pureed
food, and solid food. The child is then fed in the x-ray department, where
the x-ray evaluation of the feeding in progress can be recorded on videotape
and reviewed. Since the barium shows up on x-ray, it reveals where the
food is going when the child swallows, whether into the esophagus (as it
should) or into the lungs. Another possible source of aspiration, the child’s
own saliva, is investigated with a nuclear medicine test called a salivagram
(see page 83).
What can be done If the modiWed barium swallow shows aspiration primarily of one type of
if my child is aspi- food, then recommendations can be made to avoid this type of food. For in-
rating food? stance, if liquids are being aspirated but pureed foods are swallowed cor-
rectly, then the recommendation can be made to thicken all liquids and not
to give any liquids by themselves. (Liquids are usually more easily aspirated
than pureed or solid foods.) The child can then continue to eat by mouth and
simply avoid the foods that are hard for him or her to handle. Sometimes the
modiWed barium swallow will show that a change in position or in feeding
technique will stop the aspiration, and recommendations can be based on
these Wndings.
If there is evidence that the child is aspirating everything he or she is eat-
ing, and if there has been a history of recurrent pneumonias or chronic
congestion, then an alternative feeding method may well be recommended.
Making a decision to use one of the alternative feeding methods is depen-
dent on the child’s and family’s lifestyle, and each situation must be eval-
uated on an individual basis. If the decision is made to recommend an
alternative feeding method, then this usually means placement of a gastros-
tomy tube.
What is a gastros- A gastrostomy tube is a tube that goes directly into the stomach through the
tomy tube? skin, allowing the person to be fed without having to swallow. The food
goes directly into the stomach and then is digested normally through the in-
testinal system. Liquids and pureed foods can be put through the tube, as
can liquid medicines or crushed pills.
How is a gastros- There are four ways of placing a gastrostomy tube. A Stamm gastrostomy in-
tomy tube placed? volves placing a tube into the stomach either via an open operation (where
the surgeon makes an incision in the abdominal wall) or via a laparoscopic

procedure (where the surgeon operates using several thin tubes that are
placed through small holes or cuts in the abdominal wall). Both of these
methods are done in the operating room. The third method is called a per-
cutaneous endoscopic gastrostomy (PEG), and does not involve opening
the abdomen. An endoscope (a long tube) is placed through the mouth
and into the stomach. A needle is passed into the stomach from the out-
side and a tube pulled up from the stomach onto the abdominal wall. These
three procedures are done in the operating room with anesthesia. The fourth
is done by a radiologist, in a special x-ray room with intravenous sedation
and local anesthesia. A needle is passed into the stomach and then the tube
is pushed through the opening. Once the child has recovered from the anes-
thesia, feeding is begun through the tube. Usually, within one to three
days the child is getting all the nutrition he or she needs through the gas-
trostomy tube.
Which method for If the child has signiWcant gastroesophageal (GE) reXux requiring an opera-
placing a gastros- tion called a fundoplication (see below), then usually a Stamm gastrostomy
tomy tube is best? is placed at the same time. The operation involves tightening the lower
esophageal sphincter by wrapping the upper part of the stomach around the
lower esophagus. It can be wrapped all the way around or partially around.
This may be done either by an open procedure or laparoscopically, depend-
ing on the preference and skills of the surgeon. If there is no signiWcant reXux
and the child only needs a gastrostomy tube for better nutrition, then a PEG
may be placed. This procedure should be done by someone who has been
trained, either a gastroenterologist or a GI advanced practice nurse (nurse
practitioner), who are specialists in caring for children with gastrointestinal
diseases.
Can a child with Having a gastrostomy tube does not prevent a person from eating by mouth.
a gastrostomy tube If the tube is being placed because the child was unable to eat enough—if it
still eat by mouth? is being used as a supplement to feedings by mouth—then certainly the child
can continue to eat by mouth as well. If the tube is being placed because the
child was aspirating everything he or she was eating, then the recommenda-
tion would be not to eat by mouth, though it may be possible for the child
to take occasional tastes of food.
What are the side The most common side eVect is irritation of the skin around the tube, caus-
eVects of having a ing granulation tissue (a Xeshy projection on the surface of a wound). Infec-
gastrostomy tube? tion of the skin can develop at the site where the gastrostomy tube goes into
the abdomen, but this is usually a local skin infection and is easily treated
with an antibiotic ointment.
There are other, less-common complications: The placement of the gas-
trostomy tube may worsen or cause GE reXux in the patient who did not
have severe reXux prior to having the tube placed. Also, the placement of the
tube by Stamm gastrostomy can result in adhesions, which are bands of
Wbrous tissue in the abdomen. This can sometimes lead to bowel obstruc-
tion whereby food cannot pass through the intestines. Such a condition
would make it necessary for the child to have another operation to relieve
the obstruction.
Does the gastros- The usual routine for changing a gastrostomy tube is every three months.
tomy tube have to This schedule will help to prevent the tube from becoming infected. The
be changed? tube may also need to be changed if it becomes clogged, if the tube gets
pulled out accidentally, or if the tube has a balloon that breaks and the tube
falls out. G-tubes may be replaced by physicians, nurses, or parents, who can
be taught the procedure and made to feel comfortable doing this at home. If
a parent does not have a spare tube at home or is unable to replace it, he or
she should call the physician or go to the nearest emergency room. Replac-
Can the child ing the tube needs to be done quickly to prevent the hole from closing,
with a gastros- which can occur in a matter of hours.
tomy tube go
swimming? Yes! The child can shower or bathe, and even can go swimming.
What is a button A button tube or low-proWle tube is the name for a gastrostomy tube that
tube? lies Xat on the abdomen rather than “hanging” out from the abdomen.
Many parents prefer this type of tube because it is less obvious to others that
the child has a tube. A low-proWle tube is also less likely to be pulled out by
the child or by others, or to get caught on clothing or equipment.
Gastroesophageal ReXux
What is gastro- Ordinarily, when food is swallowed it goes down a tube in the body called
esophageal reXux? the esophagus and then into the stomach. There is a muscle or sphincter at the
end of the esophagus that acts as a one-way valve, preventing food from
coming back up the esophagus. In many newborn babies this muscle (known
as the lower esophageal sphincter) is underdeveloped, resulting in what is
commonly known as “spitting up.” As the child grows and develops, this
sphincter gets stronger and eventually stops food from coming up into the
esophagus. Thus, usually by age 1 to 1 1⁄2 years this “spitting up” has stopped.
However, in many children with CP this problem continues, though the
child may not actually vomit or have food come back up.
This condition, known as gastroesophageal reXux, or GE reXux, can
cause inXammation of the esophagus called esophagitis. This inXammation
occurs because, as the food comes up, so does acid that is normally in our
stomachs. Esophagitis causes pain, sometimes to the point where the child
refuses to eat. When severe, this condition can cause anemia from blood loss,
as well as strictures, which is a narrowing of the esophagus caused by chemi-
cal burns from stomach acid. Other complications of GE reXux include as-
piration pneumonia and an inability to gain or maintain weight.
How is GE reXux One test used to evaluate causes of GE reXux is a contrast study of the GI
diagnosed? tract, or “Upper GI.” In this test, the child drinks a milklike substance (bar-
ium) and, via x-ray, the radiologist watches it go down into the stomach.
This x-ray looks at the anatomy of the GI (gastrointestinal) tract to make
sure that there are no twists or narrowed areas (called strictures) that might
be causing the reXux. This study only takes about 15 minutes and reXux may
not be seen. If this test is normal and your physician still strongly suspects
reXux, then other tests may be recommended. These could include a pH
probe study and a gastric emptying scan.
What is a pH A pH probe is a thin wire coated in plastic that is passed like a nasogastric
probe? tube, through the nose and into the esophagus, by a radiologist or via a
procedure called an upper endoscopy (EGD) by a gastroenterologist. It
does not go all the way down to the stomach but remains a few centimeters
above the lower esophageal sphincter. This probe remains in place for 16
to 18 hours. The child is fed as usual or with some apple juice, and the
probe measures each time the child has a reXux episode and acid comes back
up into the esophagus. If your child is already on an acid-reducing medica-
tion, the medication needs to be stopped at least Wve days before the pH
probe study.
What is a gastric A gastric emptying (GE) scan (sometimes called a milk scan) is a study done
emptying study? in the nuclear medicine section of the radiology department. This test mea-
sures how well the stomach empties. The child is given a certain amount of
milk or formula that contains an isotope. The scan lasts for one hour, and
the radiologist calculates how fast the stomach empties and also notes any
episodes of reXux. Children should empty at least half of what they drink in
one hour. Less than half indicates delayed emptying of the stomach, which
can make reXux worse.
How can reXux be There are several ways to help decrease reXux episodes. One conservative
treated? method is to hold the child upright for 20 to 30 minutes after feedings. An-
other is to avoid placing the child in an infant seat to feed, as the child is
often bent forward, putting increased pressure on the stomach and mak-
ing reXux worse. Thickening feedings with cereal or a thickening agent (like
Thick-It) can help to keep food in the stomach but can also delay gastric
emptying.
Are there medica- There are medications that can help decrease reXux but do not stop it alto-
tions that treat gether. Two general types of medications are used. One group comprises
reXux? prokinetics, which are medications that help make the stomach empty faster;
the second group comprises medications that reduce acid or stop acid pro-
duction. Examples of prokinetic medications are metoclopramide (Reglan)
and bethanechol (Urecholine). These medications work by increasing con-
tractions in the stomach and by acting on the vomiting center in the brain.
They have potential side eVects, however, including decreased seizure thresh-
old, drowsiness, involuntary movements, decreased urine production, ab-
dominal cramps, and headache.
Two types of medications help reduce acid production: H2 blockers or
proton pump inhibitors. Examples of H2 blockers are Ranitidine (Zantac),
famotidine (Pepcid), and cimetidine (Tagamet). These medications decrease
a child’s production of acid and thus decrease acid going into the esophagus
with each reXux episode. Since it is the acid that causes all the complications
associated with reXux, some children only need to be treated with this type
of medication and do not have any further problems. They may continue to
reXux or regurgitate but do not have complications.
The second type of medication that reduces acid production is called pro-
ton pump inhibitors (PPI), which inhibit the production of acid. This group
of medications only comes in capsule or granule form. However, these cap-
sules can be opened up and placed in food or Maalox. Omeprazole (Prilosec)
and Prevacid are the only two that have been studied in children and have
been approved by the FDA for use in children. The potential side eVects in-
clude diarrhea, headache, and abdominal pain.
What kind of sur- The surgery most commonly done to prevent reXux is a Nissen fundoplica-
gery is done for tion, in which a portion of the stomach is wrapped around the lower part of
reXux? the esophagus. This operation prevents food from coming back out of the
stomach. It is still possible to eat after the surgery has been done, since the
procedure does not totally close oV the esophagus. Instead, it allows food
into the stomach but prevents it from coming back up. This procedure can
be done as an open procedure (with an incision) or as a laparoscopic proce-
dure. A gastrostomy tube is usually inserted at the time of surgery. An alter-
native to a fundoplication is placement of a jejunostomy (or J-) tube.
What is a J-tube? A jejunostomy tube (J-tube) is placed into the part of the small intestine
called the jejunum. This procedure can be done as a temporary measure or as
a more permanent one. In the Wrst procedure, a radiologist passes a tube
through the G-tube site, threading it down past the stomach and ending in
the small intestine. This procedure must be done in the radiology depart-
ment and involves radiation exposure for the child. This type of J-tube needs
to be replaced every three months in the radiology department and it can
easily be dislodged. However, using this type of J-tube can help determine
whether the child will tolerate feedings in the small intestine before placing
a more permanent tube or can help determine that the child needs a fundo-
plication. Placement of a permanent J-tube is done by a surgeon by taking a
loop of small intestine and stitching it to the skin surface. A low-proWle tube
may eventually be placed at this site just as at a G-tube site.
What are the The most common complication is wound infection, which may require
possible compli- local drainage or antibiotic treatment. Rarely, the wrap around the esopha-
cations of a gus is too tight, making it diYcult for food to get into the stomach. More
fundoplication? often, the child may not be able to burp and release air trapped in the stom-
ach. This can easily be treated if a gastrostomy tube is in place by letting the
trapped air out through the tube. Intestinal blockage (obstruction) from ad-
hesion formation within the abdomen can occur. These adhesive bands may
require surgery to relieve the blockage. The risk of this occurring is 5 to 10
percent. Another possible complication is the dumping syndrome, where
food exits the stomach too rapidly; the causes of this phenomenon after a
fundoplication are not clear. Finally, over time, the wrap may become un-
done (especially in a child with a seizure disorder), resulting in a recurrence
of the reXux. A reoperation may be necessary.
What is dumping “Dumping syndrome” can look like recurrence of reXux. This occurs be-
syndrome, and cause the shape of the stomach is changed and can no longer act as a reser-
how is it treated? voir to hold food in the stomach. Therefore, food dumps out immediately
from the stomach into the small intestine. This can result in malabsorption
of feedings, sweating, increased heart rate, and a sudden increase in blood
sugar followed by a sudden drop in blood sugar rather than a gradual drop.
This syndrome can be treated with formula changes, by adding complex car-
bohydrates and increasing Wber or caloric content. If these do not work, then
medications can be used to slow gastric emptying.
Is constipation a Constipation is not an uncommon problem in any child, but it is even more
common problem common among patients with CP, especially those who either are conWned
in patients with to bed or are not taking suYcient liquids—or both. If the child is not taking
CP? in enough liquids, for all the reasons discussed earlier, then constipation cer-
tainly may be another problem the child has.
How is constipa- Constipation is easier to prevent than to treat, and the Wrst step in doing ei-
tion treated? ther one is usually dietary changes. In particular, an increase in Xuids and
Wber in the diet should help prevent or treat mild constipation. It is impor-
tant to determine how constipated the child is by obtaining a careful history,
taking an abdominal x-ray, and performing a rectal exam. If there is a mod-
erate amount of retained stool, dietary changes will likely not be suYcient.
If the child has not had a bowel movement in a week, had fecal soiling, or
has been constipated for a long time, most likely he or she will need a “clean
out” to rid the entire colon of stool before being successful with a mainte-
nance regimen. A clean out can be done “from below” with enemas, or
“from above” via a tube inserted through the nose into the stomach with an
infusion of a medication called Go-Lytely. Children with CP may have de-

creased tone, and because the colon is a muscle it too may have decreased
tone. Therefore, the colon may be unable to eVectively contract to push the
stool out of the rectum. Such children may require a stimulant such as senna
or bisacodyl to help these contractions.
Osteopenia/Osteoporosis
Which children Not all children with CP are susceptible to fracturing their bones. Some chil-
are likely to frac- dren with CP do seem to be unusually susceptible, however, and will break
ture their bones their bones from a minor fall or minimal trauma or sometimes even with no
easily? obvious trauma at all. A number of factors put a person at risk for fracturing
bones easily. The more risk factors present, the more susceptible that child
is to such fractures. Once a child has had a nontraumatic fracture, his or
her risk for additional such fractures is increased considerably. The factor
that seems to predict who is at risk is low bone mineral density (called os-
teopenia).
What are the risk Multiple factors may aVect bone density in children with severe CP. Me-
factors for low chanical factors include the absence of weight-bearing ambulation and peri-
bone mineral den- ods of immobilization (sometimes in a cast) following orthopedic surgical
sity (BMD)? procedures. Diminished growth, poor nutrition, and low calcium intake
are common in this population and contribute to low BMD. Many chil-
dren with CP take or have taken anticonvulsants, which may adversely aVect
bone mineralization. Physically impaired individuals are less likely to par-
ticipate in out-of-doors activities, a factor that could aVect bone metabo-
lism, because seasonal sunlight exposure contributes to vitamin D levels.
Cerebral palsy is often associated with prematurity, and many low birth-
weight premature infants have lower than normal bone mineral content
when evaluated as older children (whether or not they have CP). Delayed
puberty may also contribute to low bone density in children. Undoubtedly,
the underlying pathophysiology of osteopenia in children with CP is com-
plex, but it is clear that the biggest risk factor is nonambulation: that is, chil-
dren who are primarily in wheelchairs or bed-ridden are the most likely to
have osteopenia.
How is bone min- The most commonly used method today is a technique called DXA, which
eral density stands for Dual Energy X-Ray Absorptiometry. It is a type of x-ray and in-
(BMD) volves a small amount of radiation exposure. It has been widely used in the
measured? elderly adult population and has been found to relate directly to the risk of
an osteoporosis-related fracture in that population. This relationship has not
yet been proven true in children, though it is assumed that the lower the
BMD, the more likely it is that a fracture could occur. Results of the DXA
study are given in actual measured density of the bone (grams per square
centimeter) but are also reported as z-scores, which is the number of stan-
dard deviations above or below normal for age and gender. A z-score of less
than –2.0 (that is, more than 2 standard deviations below normal) is the
deWnition of osteopenia. There are other ways of measuring BMD, includ-
ing quantitative CT scans and ultrasound, but these are not as widely used
as DXA.
What can be done Some of the risk factors mentioned above are not easily avoided. For in-
to prevent these stance, if a child needs to take seizure medications, the medications should
fractures? not be stopped because the child has had broken bones. It may be possible
for the child’s anticonvulsant to be changed to one with less potential inter-
ference with vitamin D metabolism. If the problem is nutritional, then some
adjustments in the diet (such as adding milk or dairy products or special
formulas with extra vitamin D, phosphorus, and calcium) may be helpful. It
is also possible to take calcium, phosphorus, and vitamin D supplements,
either in liquid or tablet form, on a daily basis. Increased exposure to sun
should help the child’s body make more vitamin D. It has also been sug-
gested that physical therapy may help improve BMD in children with CP, es-
pecially when it improves their potential for standing and ambulation.
Currently the most promising intervention to treat osteopenia in pedi-
atric populations is with the bisphosphonate medications, which are widely
used to treat osteoporosis in elderly people. In children with quadriplegic
CP, the bisphosphonate that has been used most often is pamidronate,
which is given intravenously every three months and has been shown in
small trials to signiWcantly improve BMD. Still unknown, however, is the
optimal dose and timing for this medication, and whether it actually reduces
the risk of fracture.
Drooling and Air way Issues

Why do people Lack of coordination of the muscles in the face, head, and neck can result in
with CP drool so a signiWcant amount of drooling. Just as some people can’t coordinate their
much? swallowing in order to get adequate food, some people have such poor co-
ordination that they can’t even swallow their own saliva. Certain anticon-
vulsant medications (especially Klonopin) may contribute to drooling by
increasing the amount of saliva. Of all people with CP, approximately 35 per-
cent or more drool signiWcantly.
How can this be To some extent, drooling can be improved by modifying the person’s posi-
treated? tion so that the head does not fall forward. Other measures that may help in-
clude better toothbrushing to help eliminate dental disease, correction of or-
thodontic problems that may interfere with the ability to close the mouth,
and elimination of enlarged tonsils or adenoids that may be obstructing the
mouth or nose.
Three primary methods have been tried to reduce drooling: (1) oral mo-
tor therapy, usually by a speech therapist, to improve tongue and jaw posi-
tion and mouth closure; (2) medications to decrease the amount of saliva;
and (3) surgery, either to decrease the amount of saliva or to divert the saliva
toward the back of the throat, where it can more easily be swallowed. A
fourth approach is behavior modiWcation with the use of cuing and positive
reinforcement. No one of these approaches has been proven to be more eVec-
tive than another, and both medications and surgery can have signiWcant side
eVects. Recently, however, the use of glycopyrrolate, an anticholinergic med-
ication, has been shown to be eVective, as has injection of botulinum toxin
(Botox) directly into the salivary glands.
How does glycopyr- Glycopyrrolate (Robinul) and other anticholinergic medications have
rolate work, and been used to decrease excessive tracheal and bronchial secretions, as well as
what are its side saliva. Studies of children with CP treated with Robinul have found that
eVects? most showed a signiWcant decrease in drooling (or tracheal secretions in
those who have tracheostomies). Side eVects included constipation, be-
havioral changes, dry mouth (or thick tracheal secretions), Xushing, and uri-
nary retention. A small number of those experiencing side eVects were
switched to an alternative anticholinergic medication. Such alternatives in-
clude benztropine (Cogentin), hyoscyamine (Levsin), and the scopolamine
patch (Transderm Scop).
How can I tell When a child has recurrent aspiration pneumonia, the physician usually
when my child is looks Wrst for aspiration of food, either from swallowing diYculties or from
aspirating saliva? gastroesophageal reXux. If these conditions have been corrected (for in-
stance, with gastrostomy tube feedings and fundoplication) so that there is
no possibility that food is going into the lungs, and the pneumonias con-
tinue, then the physician usually begins to suspect that the child is aspirating
his or her own saliva.
At this point, a test called a salivagram is done. This involves placing a
small amount of a radioactive material called technetium 99 on the tongue.
The technetium is followed by a special scanning device that sees if the ma-
terial goes into the stomach, as it should, or into the lungs, as is suspected.
What can be done Operations such as a tracheostomy or laryngotracheal separation may need
about aspiration to be considered. A tracheostomy involves placing a breathing tube into the
of saliva? trachea (windpipe) at the front of the neck. This procedure is recommended
when a child has a breathing obstruction in the upper part of the airway, such
as in the mouth, throat, or larynx. A regular tracheostomy does not prevent
aspiration and in most cases is used to treat upper airway obstruction rather
than aspiration.
A laryngotracheal separation is a more absolute procedure, in that it com-
pletely separates the windpipe and lungs from the mouth. It is highly suc-
cessful in preventing aspiration. The major drawback is that it is permanent

and that, after a laryngotracheal separation, the person will never be able to
speak. This procedure is therefore reserved for children with severe aspira-
tion and with signiWcant mental impairment who are not expected ever to
develop a signiWcant amount of verbal speech.
What care is Caring for the tracheostomy tube can be intimidating at Wrst. Nurses at the
involved for a hospital, where the procedure is initially done, teach parents and other care-
child with a givers how to manage the “trach” tube at home. Routine care involves suc-
tracheostomy? tioning the tube and periodically replacing the tube with a new one. The
frequency of suctioning can be from as seldom as a few times a day, or just
when the child is congested, to as often as once every 1 to 2 hours. The tra-
cheostomy allows secretions from the lungs and airway to be suctioned eas-
ily. The presence of a tracheostomy tube may aVect the child’s acceptance
into certain schools that cannot handle the amount of nursing care necessary.
What equipment A child with a tracheostomy usually needs a fair amount of equipment at
is needed to care home, including a humidiWer, which provides a mist to help increase the
for a tracheostomy? moisture in the air in the child’s room. Many children require this only when
they sleep. A child may or may not need oxygen with a tracheostomy. Many
need a suction machine and suction catheters in order to help suck out the
secretions in the tracheostomy tube itself and to keep it from getting plugged
up. As part of tracheostomy care, parents may be taught to do chest physio-
therapy, which involves pounding on the chest and draining the phlegm in
the airway. The tracheostomy tube is changed at a regular interval, usually
every week. Some children also may require medications to be delivered
through their tracheostomy, often with the use of a nebulizer (which is sim-
ilar to a vaporizer in that it produces a medicated mist). These medications,
such as albuterol (known as Ventolin or Proventil) and budesonide (Pulmi-
cort) are given to children who have recurrent wheezing, either on a regular
basis or just when they have symptoms.
What is a normal Sleeping habits vary widely, but most healthy people get an average of 7 1⁄2 to
sleep pattern? 8 hours of sleep per night, with anywhere between 4 and 10 hours consid-
ered normal. An individual’s needs depend on genetic factors and ingrained
rhythms. REM sleep is the stage of dreaming that is associated with deep
sleep and is the pattern that usually dominates during the last half of the
night. Young children average seven such cycles each night and awaken one
to three times per night, whereas adults have fewer REM cycles and typically
awaken two to four times per night.
What causes sleep A regular sleep pattern is established in the Wrst few years of life. Often, an
problems, and how infant or a 2- to 3-year-old child Wghts this pattern and wants to stay awake.
are they treated? If this happens, parents should set a speciWc bedtime, using the time just be-
fore it to help the child settle down through quiet activities.
If parents do not set a regular bedtime, or if there is a great deal of night-

time activity, the child may not develop the habit of going to bed and to sleep
at the same time every night. Sometimes, too, an established sleep pattern
may be disrupted by a major event such as illness or surgery. The changed
routine may disrupt the child’s sleep pattern even after he returns home.
Some children with CP never develop a sleep pattern—perhaps be-
cause of brain immaturity. In this situation, doctors sometimes prescribe a
sedative.
When is snoring a Snoring is very common in adults and not unusual in children, and it gener-
problem? ally is no cause for concern. Sometimes snoring is an indication that there is
a serious obstruction of the upper airways, however, especially when it is
accompanied by episodes of apnea (cessation of breathing). Snoring usu-
ally results from a partial obstruction of the airway during sleep, but when
the obstruction becomes total, obstructive sleep apnea occurs. If left un-
treated, obstructive sleep apnea can lead to serious heart or lung disorders or
even death.
Obstructive sleep apnea is characterized by loud snoring with episodes of
silence during which the snorer struggles unsuccessfully to breathe. After
several seconds of such eVort a loud snort forces open the airway, and breath-
ing resumes. This is often accompanied by the child’s awakening partially,
sometimes kicking, Xailing the arms, or experiencing a total body spasm.
The child may then resume sleeping only to experience the same sequence
of events again. These problems are considered pathological when apnea
lasts longer than 20 seconds and occurs more than 7 to 10 times an hour or
30 times per night.
What causes this One or more factors may contribute to this obstruction of the upper part of
obstruction? the airway, which includes the mouth, throat, and larynx (where the vocal
cords are located), resulting in decreased or no movement of air into the
lungs. A child’s throat muscles may have inadequate tone and poor muscle
control, allowing the tongue to fall back into the throat, so that the airway
becomes blocked. This is often the cause of the obstruction in children with
cerebral palsy. Enlarged tonsils or adenoids can obstruct the airway; in chil-
dren, this is the most common cause of obstruction. Adenoids, which sit
above the roof of the mouth in the back of the nose, may block nasal pas-
sages, causing a child to breathe through his or her mouth, especially while
sleeping. They also can block normal drainage of Xuid from the middle ear
and contribute to middle ear Xuid and infection. By blocking the oral and
nasal airway, enlarged tonsils and adenoids can worsen the mouth breathing
that is typical in children with CP, as well as worsen drooling and cause sleep
apnea and sleep disturbance. Obstruction of the nasal passages, often sec-
ondary to allergies, creates a negative pressure when the patient breathes in
and can cause this problem, as can an unusually large soft palate or uvula,
which obstructs the airway when the patient is lying Xat.
Besides snoring, A child who hasn’t slept well at night might be hyperactive or antisocial,
are there other tired, and cranky during the day. Some children with obstructive apnea have
symptoms of a below normal body weight and may be very slow eaters or dislike foods
obstructive apnea? that require chewing—though, as we’ve seen, there are many other reasons
why someone with cerebral palsy might have trouble eating. Another sign is
that nighttime bed wetting may reappear in a child who has been dry. A child
may chronically breathe from the mouth because of the obstruction, and this
can lead to orthodontic malformations and changes in the development of
the face known as adenoid facies, or long face syndrome.
What is the treat- The treatment is aimed at relieving the obstruction: if obstruction is due to
ment for obstruc- enlarged tonsils and adenoids, for example, then these are removed. Some
tive apnea? children undergo surgical reconstruction of the airway, including a uvu-
lopalatopharyngeoplasty (UPPP). If the child is markedly obese, weight loss is
the Wrst attempted treatment. Night-time BiPAP, which involves delivering
airway pressure through a face mask at night while the child is sleeping, is
also a treatment for obstructive sleep apnea. For children whose obstruction
is severe and caused by poor muscle control, or for those who don’t respond
to the less invasive treatments, a tracheostomy may be recommended.
What complica- Commonly, there is a sore throat following this surgery, which may interfere
tions are possible with the child’s ability to eat and drink. Bleeding from the throat, although
from a tonsil- unusual, can occur even two weeks after surgery. In children with CP there
lectomy and are other risks, such as the inability to handle secretions, especially with the
adenoidectomy? sore throat postoperatively, which may increase the possibility of aspiration
pneumonia in the days just after surgery. The presence of poor respiratory
muscle control and an ineVective cough may also increase the likelihood of
pneumonia. These operations pose a special risk for children who are men-
tally retarded and for very young children. For these children, poor intake of
Xuids after surgery may put them at signiWcant risk for dehydration, pro-
longing their hospitalization following surgery. Thus, children having this
procedure usually stay in the hospital overnight.
Communication Issues
What are the fac- To communicate successfully, a person must be able to receive and interpret
tors that make it language as well as to express it. Cerebral palsy may interfere with both re-
diYcult for a ceptive and expressive language skills. Poor attention span, for example, with
child with CP to or without mental retardation, can decrease the ability to process speech
communicate? from other people. A hearing impairment can also interfere to the point of
aVecting speech and language development. On the expressive side, neuro-
muscular disability can interfere with breath control, vocal cord movement,
and lip, tongue, and palate motion—all of which can result in articulation
problems and diYculty in speaking.
What can be done Early diagnosis and identiWcation of any factors that might be correctable
to help my child (such as Xuid in the ears) is the Wrst step to ensuring good communication.
communicate? If there are no factors that can be corrected—that is, if the impairment is due
to the cerebral palsy itself and not to a correctable hearing problem, for in-
stance—then the child may be referred to a speech therapist, who may help
improve communication for the CP patient. For children who have normal or
near normal intelligence and the ability to comprehend and express thoughts
but who cannot speak because of the cerebral palsy, there are assistive de-
vices, known as augmentative communication devices, that can help. These de-
vices, ranging from a simple board with pictures to point to or focus on with
the eyes, to very sophisticated electronic devices with synthesized speech,
can help a child with cerebral palsy express himself even when he cannot
form words with the vocal cords. As a part of the evaluation, speech thera-
pists determine which of these diVerent devices are most appropriate for an
individual child.
Dental Issues
At what age A child with cerebral palsy should be seen at the age of 18 to 24 months for
should a child a Wrst exam, just like any other child. This Wrst visit is even more signiWcant
with CP have a when a child has CP, however, because it enables the dentist and staV to eval-
Wrst dental uate their ability to treat the child and their interest in accepting the child for
evaluation? treatment. The Wrst visit usually includes a detailed medical and dental his-
tory and a thorough examination and dental x-rays. X-rays may need to be
taken under sedation if the child cannot sit still.
Do children with Dental cavities depend on the presence of plaque, which is a group of bacte-
CP have more ria Wrmly attached to the tooth structure. There are many factors that can
cavities than other promote the accumulation of plaque and, ultimately, the formation of cavi-
children? ties. For one thing, a defect in the enamel (the outer covering of the tooth)
can make the tooth more susceptible to cavities. Such defects are more com-
mon in children with cerebral palsy. Also, the arrangement of teeth in the
mouth, especially when they are crowded and irregular, can make the teeth
more susceptible to cavities because it also makes cleaning these teeth more
diYcult. Finally, it is very diYcult to get a toothbrush into the mouth of a
child with CP who has a tonic bite reXex or a strong tongue thrust. Because
it is hard to clean the child’s teeth, he or she is more likely to get cavities. Cav-
ities can be painful. When a child who cannot communicate is crying, cavi-
ties must be considered in the list of possible reasons for the tears.
How can cavities Fluoride is recommended for all children and can be administered through
be prevented? Xuoridated water or, if the water system is not Xuoridated, through Xuoride
drops or pills taken daily. In addition, dentists often apply a Xuoride coating
to the teeth at the time of a child’s visit. In the dentist’s oYce, with proper
equipment the dentist or hygienist also may be able to clean the teeth more
eVectively than the parents are able to.
What is gum Gum hypertrophy (also called gingival hypertrophy) is enlargement of the
hypertrophy? gums. The enlargement takes the form of a painless mass of tissue which is
Wrm and pink and which may grow over the teeth. It appears more fre-
quently in the front part of the mouth. Areas that are without teeth are rarely
involved. If this tissue becomes inXamed as a result of local irritants, the
gums may become dark pink or red and bleed easily. They may even become
painful.
Gum hypertrophy sometimes develops as a side eVect of medications, es-
pecially Dilantin. In fact, approximately 40 percent of people taking this
medication develop the problem. Symptoms are more prevalent in younger
children and occur approximately 2 to 3 months after they start to take the
medication. Symptoms reach their worst level after 9 to 12 months.
What’s the treat- Swollen gums can be treated by eliminating the local irritants with good
ment for swollen toothbrushing and tooth cleaning. The most eVective method for treating
gums? swollen gums is to remove the extra tissue surgically. Even after surgery
the tissue can regrow, but it may be less extensive if good toothbrushing is
maintained.
Are there other Another abnormality is malocclusion, meaning poor alignment of the teeth.
dental abnormali- In malocclusion the upper teeth do not line up evenly opposite their coun-
ties that are com- terparts on the lower jaw. Muscle spasticity has a direct relationship to den-
mon in children tal and skeletal formation. The spasticity results in pathological contraction
with CP? of muscles. Head and neck muscles are all involved, and when the motor
nerves that supply the muscles of chewing are in spasm, they can remodel the
bones of the face. When this aVects the jaw, it can result in malocclusion.
Thrusting of the tongue, and mouth breathing, also can aVect the shape of
the jaw and contribute to malocclusion.
Hernias and Undescended Testicles

Are children with A hernia (or rupture) is a projection of a body part beyond its natural loca-
CP more likely to tion. The most common type of hernia is an inguinal hernia, in which the
get hernias? rupture occurs in the groin region. It appears that the incidence of inguinal
hernias in boys with cerebral palsy is higher than that in boys who do not
have cerebral palsy. We know that inguinal hernias are more common in pre-
mature infants, especially those weighing less than 1,500 grams (3 lb. 5 oz.).
But even among these children, the incidence is higher for those who have
CP, possibly twice as great as that among premature children without CP.
It’s not clear why this should be so. In a child with CP, especially a boy who
was premature at birth, parents and the physician should be on the alert for
signs of an inguinal hernia, especially for swelling, either in the scrotum it-
self or, more usually, in the thigh area above the scrotum.
Are undescended Normally, the testicles begin forming in the abdomen of the male fetus prior
testicles a common to birth and descend into the scrotum by the time of birth, if the baby is full
problem? term. Thus, premature infants are more likely to have undescended testicles.
However, the testicles will often descend on their own into the scrotum by
the end of the Wrst year of life. If they do not, surgical correction is recom-
mended, because the undescended testicle can twist on itself, cutting oV the
blood supply and permanently injuring the testicle. An emergency opera-
tion is required if this occurs. An undescended testicle also may develop a tu-
mor later in life. It is easier to detect a testicular tumor if the testicle is in its
normal position within the scrotum.
Even if the testicles are normally descended at birth, there can be prob-
lems later on. Studies have shown that there is an increased incidence of un-
descended testicles in teenage boys and young adults with cerebral palsy,
with estimates as high as 50 percent of males with CP having this condition.
It would appear that spasticity of a muscle known as the cremasteric muscle
causes a higher position of the testis as the boy with cerebral palsy grows
older, thus pulling it out of the scrotal sac.
Retractile testicles are those that are not in the scrotum but can be felt in the
groin and brought down into the scrotum by gently pulling with the hand.
Retractile testicles do not usually become undescended and do not need
surgery.
Do children with Problems with bladder control are not common in children with cerebral
cerebral palsy have palsy, but they do occur more often among these children than among
more trouble with the general population. These problems can include incontinence (day or
bladder control? nighttime wetting), diYculty starting a urinary stream, or symptoms of
urgency, meaning the feeling that one has to urinate immediately, without
prior warning. Some children may have subclinical voiding disorders,
meaning their bladders do not work entirely normally, but they do not
show any symptoms under ordinary circumstances. These children may then
develop symptoms, especially an inability to empty the bladder, after surgi-
cal procedures.
Issues Regarding Puberty

What physical In boys, the onset of puberty is marked by the testicles getting larger, fol-
changes should I lowed by pubic hair and the penis getting larger. The age range for the start
expect when my of puberty in boys is generally between nine and 14 years. It is generally be-
son begins lieved that a boy who develops puberty before age nine, or does not develop
puberty? signs of puberty by age 14, should be evaluated by a doctor for a possible
medical problem. It has been found that boys with CP start puberty earlier
than boys without CP, but progress through the stages is slower, and pu-
berty ends later.
What physical Girls generally begin with breast growth, followed by pubic hair growth,
changes should I followed by the start of menstrual periods. For girls without CP the starting
expect to see when age of puberty, which begins with breast growth, could be as early as age six
my daughter years but is generally around age eight years. The end of puberty, considered
begins puberty? the time when a young woman gets her Wrst period, is at approximately 12
years of age. From start to Wnish, puberty takes about two to Wve years. Nu-
trition, body fat, racial background, medications, and underlying medical
conditions aVect a young woman’s puberty. No breast growth by age 14 or
no periods by age 16 is concerning and should be evaluated by a doctor.
Will CP aVect Although girls with CP start puberty earlier than girls without CP, they
my daughter’s end puberty later, with periods generally beginning at age 14. In addition, in
puberty? girls with CP, pubic hair tends to appear before breasts begin to grow. This
is diVerent from girls without CP, in whom breast growth is the Wrst sign
of puberty. The average age of the start of breast development in girls with
CP is about 10 years, and the average age of the start of pubic hair is about
eight years.
How will puberty In young women with CP and seizures, the onset of menstrual periods can
aVect seizures? be a cause of worsening seizures. The hormones that control the menstrual
cycle also have an eVect on the brain. Because of the monthly changes of
these hormones, seizures may increase a few days before and a few days into
the menstrual bleeding.
What can be done There are several options for managing these seizures. One strategy is to give
if a girl experi- an extra dose of the prescribed antiseizure medication a few days before the
ences increasing expected start of the period and about two days into the bleeding. Another
seizure activity option is to provide hormonal therapy in the form of a pill or an injection.
during puberty? A change in the dosing of the antiseizure medications may be needed as
the way the body handles those medications changes during puberty. This
should be discussed with the physician who treats your child’s seizures.
What can be done Premenstrual syndrome (PMS) usually occurs one to two weeks before the
about a change in onset of bleeding and goes away a few days after bleeding begins. Young
behavior that women with PMS report a multitude of symptoms, including hot Xashes,
occurs around the chills, diYculty concentrating, and mood changes, including irritability and
time of a girl’s depression. In women and girls with mental retardation, PMS can cause
period? an increase in behavior problems, seizures, aggression, tantrums, crying
spells, self-abusive behavior and self-mutilation, restlessness, and agitation.
Hormonal contraception, medications such as ibuprofen or naproxen, as
well as medications used for depression, can be used for these symptoms.
Talk with your doctor about the options that would be appropriate for your
daughter.
What can be done Pain during the time of a period is called dysmenorrhea. Usually pain onset is
about a girl within one to four hours of the start of the period, and lasts for one to two
becoming agitated days. In some girls, the pain starts earlier and ends later. Nausea, vomiting,
and seeming to be diarrhea, back pain, thigh pain, and headache may also be experienced. Girls
in pain around who cannot communicate may become very agitated and distressed during
the time of her their period because of these symptoms. They may thrash around or tense
period? up. Posturing, teeth grinding, and increased irritability may occur as well.
Although medications such as ibuprofen and naproxen are very eVective for
the treatment of dysmenorrhea, if symptoms continue birth control pills
may be eVective.
What can be done Menstrual hygiene may be an issue for some teenage girls with CP. Although
if menstrual it is felt that with encouragement and teaching most girls with mental retar-
bleeding is diY- dation can learn to use sanitary napkins, some girls with CP simply cannot
cult to manage? change a pad or a tampon. During the Wrst two years of starting to have pe-
riods, some girls may bleed unpredictably and heavily at times. This bleed-
ing should be evaluated by a physician. Although most girls will outgrow it,
it is a nuisance for families and the child. In such a situation, hormonal con-
traception as well as surgery, both of which are discussed below, can be used
to stop or decrease monthly bleeding.
Do females with Teenage girls and adults with cerebral palsy are capable of and interested in
cerebral palsy need sexual activity in much the same way other women are. Women who have
birth control? severe physical limitations may not be able to seek out such activities on their
own, but they may be victimized by males in their environment. Studies
have shown that girls who are mildly mentally retarded engage in sexual ac-
tivity, including sexual intercourse, in proportions comparable to the gen-
eral adolescent population. Those who are moderately or severely retarded
do so in much smaller percentages. One-third of mildly retarded and one-
fourth of moderately retarded adolescent girls have been reported to be vic-
tims of rape or incest.
Teenage girls who are out of the home and are not under the direct su-
pervision of their families may engage in sexual activity, and they need to
be protected with birth control. Contraceptive devices include condoms,
intrauterine devices (IUD), or hormonal contraception. Hormonal con-
traception comes either as a pill that needs to be taken daily, an injection
that is given every three months, or a patch that is placed on the skin and
is changed weekly. The injectable hormone, medroxyprogesterone acetate
(Depo-Provera), is given by injection and will protect against pregnancy for
three to six months. It also often decreases the amount of menstrual Xow
considerably, making it easier to manage the period. The intrauterine device
(IUD) providing protection against pregnancy is inserted by a gynecologist

and can remain in place for many years. Both of these approaches to birth
control are more reliable than birth control pills or condoms in a population
that may not remember to take a pill every day.
What are the If an IUD gets infected or is causing pain, it needs to be removed. Unfortu-
potential side nately, some girls with CP may not be able to communicate that they are
eVects of these having problems with their IUD. This can lead to medical complications.
birth control Neither the IUD nor hormonal treatment will prevent sexually transmitted
methods? infections.
The disadvantage of the pill and the patch is that they may cause blood
clots. These blood clots can cause severe illness and, in some cases, death.
There is also a concern that if there are heart problems, blood clots can de-
velop in the heart which can then travel to the brain and cause a stroke. The
lack of mobility seen in many girls with CP, it is thought, may predispose
them to get blood clots if they use a contraceptive patch or pill. Although
this association has not been deWnitely proven to be true, it is a reason why
many physicians do not prescribe the patch or the pill to young women who
have CP.
With the injectable hormone, the likelihood of blood clots is not re-
garded as a major issue. However, a young girl receiving the injection may
gain up to 10 pounds and risks having worsening of osteopenia, which is al-
ready a problem for many patients with CP.
Would a young A parent seeking hormonal contraception for the child, hormonal control of
woman need an the child’s period, or control of the symptoms that come with having a pe-
“internal” exam riod, should consult a physician who is experienced in the use of such meth-
before starting ods. There are medical conditions that would exclude some girls from re-
hormone ceiving some of these hormonal treatments, but, in general, a therapy can be
treatment? found that is safe and eVective for most women. One concern that arises is
the need for a pelvic or “internal” exam to start hormonal therapy. It is gen-
erally accepted that if a girl’s blood pressure is normal, and a careful medical
and family history does not reveal any reasons for refraining from hormonal
therapy, a breast and pelvic exam is not required.
If medications Surgical options are available but are a diYcult issue. The two procedures
are not an option, performed are hysterectomy, which is removal of the uterus, and endome-
is surgery a trial ablation. Endometrial ablation involves the destruction of the inside
possibility? lining of the uterus so that bleeding is decreased or stopped altogether. Not
all women stop bleeding right away or even have a decrease in their bleed-
ing, so it is not guaranteed to work. Sometimes it needs to be repeated to
obtain the desired result.
Endometrial ablation is also controversial because a woman can still be-
come pregnant after she has the procedure. A woman who becomes pregnant
after such a procedure is at risk for problems with her pregnancy. It has been
recommended that a woman be sterilized if she has endometrial ablation.
Can a young Some parents would like to have their daughters sterilized surgically, by hav-
woman with cere- ing a hysterectomy performed or having their daughter’s fallopian tubes tied
bral palsy be steril- so that becoming pregnant would never be an option. This is especially true
ized at the request of parents of severely retarded women who would not be capable of caring
of her parents if for a child. Whereas years ago many retarded women and men were steril-
she is severely ized against their will, doing this is much more diYcult today. A parent must
retarded? go through the courts to obtain permission to have the procedure done, pri-
marily because society feels that being able to bear a child is an inalienable
right. In the case of a retarded individual, the burden is on the parents or
others to prove that bearing a child is not in the best interests of the woman
who is to undergo sterilization; in general, having cerebral palsy in and of it-
self would probably not be enough of a reason. Profound mental retardation
and the possibility of being sexually abused would need to be entered as rea-
sons in addition to CP for this procedure to be approved.
When people with Since CP is not a genetic disorder, there is no genetic reason that the disor-
CP have children, der would be passed on to the next generation. There has been concern that
what is the risk a problem with the woman’s placenta might aVect the baby, but recent stud-
that their babies ies indicate that this is not so. Also, the frequency of miscarriages and tox-
will have CP? emia are no greater for women with CP than for other women. The major-
ity of disabled adults have normal children, though parents with CP have
more children with abnormalities of all kinds than the norm.
Life Span
What is the In recent years, children with cerebral palsy have been surviving to adult-
expected life span hood in much greater numbers than ever before. In the general population
of someone with of children, more than 99 percent survive to age 20, whereas approximately
cerebral palsy? 90 percent of children with cerebral palsy survive to age 20. Those with no
severe functional disabilities have a 99 percent survival to age 20, compared
with those with severe functional limitations in all three major areas (ambu-
lation, manual dexterity, and mental ability), whose survival is only 50 per-
cent at age 20. Death is usually due to respiratory illness, often aspiration
pneumonia or upper airway obstruction. As physicians become more vigor-
ous in treating aspiration and gastroesophageal reXux with gastrostomy
tubes and fundoplications, and in treating obstruction with tracheostomies,
there is a greater chance that many more children with CP will survive into
adulthood.
Sometimes a family is faced with having to decide whether to let their
chronically ill child die or whether to introduce new and more intensive
treatments, such as using a ventilator. Some families will choose to provide
comfort to the child without any intensive intervention, while others will
elect to do everything possible. Parents need to think about this issue before
a crisis arises. It’s helpful to talk it over with those who can provide emo-
tional support, such as other family members, the family’s or child’s physi-
cian, or clergy. If possible, discuss it with the child herself. While there is no
one right answer for all patients and their families, many families have to face
making this decision at some point, and it is helpful to have thought about
it in advance. You may also want to put your wishes into a document called
an “Advanced Directive,” which speciWes what kind of treatments a patient
would and would not want when being admitted to the hospital. A parent
(or any adult) who is the guardian of a disabled child can complete this form
on their child’s behalf.
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Intellectual,
Psychological,
and Social
Development
4 ♦ T H I S C H A P T E R explores how cerebral palsy aVects the intel-

lectual and psychological development of the individual from infancy,
toddlerhood, and childhood through adolescence and young adulthood.
We focus on the emotional and social development of children with cerebral
palsy, and we also look at how children develop intellectually. We explore
how cerebral palsy aVects psychological development diVerently in diVerent
children, depending upon what part of the child’s body is aVected and how
profound the involvement is. Family functioning is important to the well-
being of a child with cerebral palsy, so in this chapter we pay attention to
both the family and the child. In fact, since problems in the newborn are so
devastating for families, we begin the chapter with a look at how families
function.
Birth to One Year

The hallmark of emotional development during this period is the grow-
ing attachment between parents and their new baby. This attachment is de-
pendent upon the interplay between the infant’s characteristics (for example,
his or her temperament) and the parents’, and the interplay itself inXuences
the child’s emotional development. The child’s intellectual development, on
the other hand, is driven by the infant’s motivation to reach out and discover
the world by using sensorimotor actions on people and things around him
or her. Cerebral palsy can aVect the infant’s emotional and intellectual de-
velopment both directly, through the child’s limitations, and indirectly, by
the way the world responds to the child.
How might par- The discovery that their baby has a disability usually has a signiWcant impact
ents react when on parents and on how the family functions. Often the disability begins to
they hear that have an impact before a diagnosis is made. In this case, parents “just know”
their child has that their child is not developing or behaving as they expected. They begin
cerebral palsy? to be concerned that something is wrong with the baby, even though the
doctor may not yet know whether or not something is wrong. Thus, parents
98 ♦ intellectual, psychological, and social development
sometimes experience anxiety and fear even before the doctor is Wnally able
to deliver the diagnosis. The tension and fear experienced during this period
of uncertainty often lead to stress and may begin to undermine the family
unit even before the diagnosis has been made.
When they hear that their baby has cerebral palsy, parents often react by
going into a state of shock or disbelief. Such a reaction to threatening and
devastating news is natural and, indeed, expected. But individuals who are
in this state are likely to experience stress even more keenly than they would
if they were able to react normally. Shock and heightened stress often make
it diYcult for parents to take in all the information that the doctor gives
them. Because of this, it’s a good idea for parents to return to their doctor to
go over information about their child’s medical condition.
How does the ini- As parents become better acquainted with their child and understand more
tial reaction about what cerebral palsy means, they develop diVerent responses to their
change over time? child’s disability. Some parents cope by getting as involved with their infant’s
care as they can. This means that they investigate the nature of their baby’s
disability and take an active role in the baby’s care and therapy.
For other parents, the grief, pain, and uncertainty that they feel about
having a child with a disability is more than they can endure. To cope with
these feelings, these parents sometimes either deny that their baby has a dis-
ability or they minimize its eVect. Such denial is likely to become more ap-
parent as the child gets older and the extent of the involvement becomes
clearer. Other parents, laboring under these same stresses and feelings, con-
tinue to feel angry about what has happened to them.
Becoming actively involved in the infant’s care and therapy is a healthy way
of coping with the feelings a parent has when he or she discovers that an infant
has cerebral palsy. Denial and anger, on the other hand, can have a negative
eVect on the child and the parents—indeed, such feelings take their toll on
people and relationships throughout the family. Spouses who are persistently
under stress, for example, might Wnd that they argue more often. Sometimes
the care and the long-term outlook for the disabled child are the source
of the conXict. The end result of these reactions is that the parents emotion-
ally distance themselves from the child. This, in turn, means that the much-
needed emotional closeness between the parents and the child is diminished.
Families in this situation are vulnerable to continuing discord, which can
lead to separation and divorce. Other children in the family can be aVected
by this persistent discord, too. They are often neglected or shunted aside for
periods of time because their parents are preoccupied with the disabled baby.
Brothers and sisters of a child with a disability are at higher risk for develop-
ing emotional, learning, and behavioral problems.
How does the fam-
ily’s emotional If the parents deny that their child has a problem, they can’t really absorb the
reaction aVect information provided to them by doctors and other professionals involved
the child? in the care and treatment of their child. Without this information, parents
intellectual, psychological, and social development ♦ 99
may not be in a good position to make decisions about or take part in their
child’s treatment, or they may be unable to make proper use of the resources
available to help.
A parent’s negative emotional reaction can also inhibit development of a
healthy relationship with the baby. For a few parents the pain and hurt may
be so crippling that they become depressed and don’t interact with their
baby. These parents are psychologically and emotionally unavailable to the
child. The result of this is a weakened attachment that may result in the abuse
or neglect of the child. In response, the baby typically becomes withdrawn
and depressed.
Some parents overprotect the child in situations they view as potentially
harmful or dangerous. Overprotection may also stiXe the child’s develop-
ment and inhibit the child’s eVorts to be more independent, which is usually
seen in the second year of life.
Finally, some parents may react by overcompensating. They may ask the
baby to do too much, or they may have higher expectations for the child’s
progress at any point in treatment than the child can realistically be expected
to meet.
How can the fam- Families need professional help and good support to come to terms with
ily be helped? the fact that their baby has a disability. Ideally, help in the form of counsel-
ing, therapy, support groups, and sibling groups will be oVered to the fam-
ily within a reasonable time after the diagnosis is made. This help could
go a long way toward preventing the development of unhealthy parental
coping styles. It also prevents many of the other undesirable consequences
mentioned.
How does the emo- One important development in the Wrst year of life is the establishment of
tional tie between a lasting tie between the baby and his or her parents in a process known as
parent and child attachment. The strength of this tie is inXuenced by the way in which the
develop? baby and the parents respond to each other. The baby’s appearance, vigor,
and basic way of responding to the environment (that is, his or her temper-
ament) are important factors, just as are the parents’ skillfulness at tuning
into the feelings of the baby and “reading” his or her needs. In addition,
the parents’ ability to adapt to the temperamental style of the infant (espe-
cially if he or she is fussy and irritable) plays a large role in the development
of this tie. If secure attachments begin to develop with the infant early in
life, they are demonstrated in many infants by a fear of strangers (which
develops at around 7 to 8 months), by a sense of trust in the parents, and by
a mutual love between infant and parent. The sense of trust and security,
which for the young child go hand in hand, are of course undermined by
parents who are not emotionally available to the baby or who abuse or
neglect the baby. Failure to develop this sense of trust is demonstrated when
a baby fails to thrive and grow or becomes either very negative or passive and
withdrawn.
How are emotions A second major development in the infant during this Wrst year is emotional
expressed? expression—the infant’s ability to signal his or her feelings through facial ex-
pression, body tone, and activity in a way that is accurately communicated
to caretakers. Basic emotional expressions of joy, sadness, and anger are com-
mon by the end of this phase of life. The development of the ability to ex-
press basic emotions is important because it helps the communication be-
tween parent and baby and cements the evolving relationship between them.
What is the rela- A third development that begins to appear in this period is the growth of mo-
tionship between tivation. Motivation is a set of feelings that makes the baby act. The impor-
the child’s emo- tant motivational factors that develop during this period are the need to re-
tions and his or late to others, the need to learn to use the body to get around, and the need
her actions? to use toys and other materials and understand how they work. The devel-
opment of motivational factors during this period of life is one of the build-
ing blocks for later emotional, social, and intellectual growth.
How does cerebral The inXuence of cerebral palsy on emotional growth during the Wrst year of
palsy aVect these life depends on two factors: how parents cope with having an infant with a
areas of emotional disability, and personal characteristics of the individual infant. The role of
growth? parental coping strategies has already been discussed; the baby’s role is inXu-
enced by his or her temperament and the extent of the cerebral palsy.
An infant who has an engaging style of responding to his family, regard-
less of how much disability he might have, may conquer his parents’ pain
and fears and weave them into a tapestry of mutual love which will promote
attachment and security. On the other hand, an infant who has a mild degree
of disability but who nevertheless has a diYcult temperament may intensify
his parents’ pain and fears and thereby frustrate his own emotional growth.
Much of the emotional development that takes place during the Wrst year
of life depends upon the infant’s ability to signal needs and express emotions
to his parents. This ability may be impeded in an infant who has either ex-
tremely low or high tone. For example, a baby who is very Xoppy and Xac-
cid may not have the muscle strength to express emotions or needs in a way
that will produce interaction with a parent. For an infant with very high tone
(such as a child with spastic quadriplegia), the inability to control movement
could inhibit or distort emotional expression. In either case, the lack of or
distortion of the expression of emotions and needs may make it seem that
the infant is not really responding when a parent is trying to “read” the baby
and interpret his needs. This can be frustrating to parents and can lead them,
over time, to spend less time interacting with the baby. This in turn can jeop-
ardize attachment and security, and it can ultimately jeopardize the infant’s
What can parents emotional development.
do to cope with
their child’s A parent whose child has either lack of or distortion of expression can be
expressive helped. The parent of a very low-toned infant can be taught to read the di-
disability? minished or muted cues of the baby so that satisfying interaction takes place.
The parent of an infant who is severely involved (who has very high tone)
can be taught to work with the infant by anticipating the baby’s schedule and
providing what the infant probably needs. Likewise, parents can learn to use
a variety of soothing techniques to quiet a stiV, irritable child and to arouse
their infant in a way that will promote love and communication. In addition,
a consultation with a qualiWed mental health or health professional may be
useful in helping parents work with these kinds of problems.
How can parents Cerebral palsy also has an impact on the baby’s motivation to interact with
motivate the her surroundings. Its eVect is apparent in the infant’s desire to master her
infant with cere- body in order to move about and reach and grasp, and to make things work
bral palsy? or happen: to play with toys, for example. The impulse to move about and
explore is thwarted if the child has very low muscle tone. Alternatively, a
child may have so much spasticity (tightness) that she can’t move about or
reach out, grasp, and manipulate toys and other objects. In either case, par-
ents need to bring the world to the child. This means moving the baby to
diVerent rooms in the house or having the baby “ride along” when common
household routines like cooking or cleaning are taking place. It also means
presenting the baby with appropriate toys (like a rattle), showing the infant
how the toy works (shaking the rattle to make a noise), and assisting the in-
fant in her attempts to play with the toy.
Some babies with low tone may be less inclined to move about and ma-
nipulate toys. In this case parents can put desirable toys just out of reach, to
motivate the baby to move and reach and grasp. It’s especially important to
teach the baby to be persistent in overcoming obstacles in order to attain a
goal. The baby may have the desire to move about or to manipulate toys but
may Wnd it diYcult to do this because of spasticity. In this case parents need
to assist the baby in his eVorts in a way that helps the baby reach his goal.
This does not mean doing it for the baby; it means providing the minimal
amount of support and assistance needed. For example, when the child
learns that he can propel himself forward on his own to get a toy, or can grasp
and move a rattle with his hand to produce a sound, he will feel a sense of ac-
complishment and will be encouraged to try other things. The baby’s moti-
vation to persist and to try to master tasks should be supported in a way that
allows the baby to deal with a tolerable level of frustration and yet be suc-
cessful. Parents may Wnd it helpful to consult with an appropriate profes-
sional, such as a physical or occupational therapist, for ideas and help in
these areas.
How does intelli- The development of intelligence during this period of life depends to a
gence develop? great extent on the infant’s ability to anticipate regularly occurring events
(so-called contingent relationships) and to use her sensorimotor system
to explore objects, to discover the permanence of objects, and to come to
recognize the uses of some objects commonly found in her environment
(like toys).
The capacity of the baby to anticipate regularly occurring events comes

about when the baby learns, for example, that crying and thrashing about
will bring her contentment in the form of food, a diaper change, the chance
to sleep, or the experience of being comforted in her mother’s or father’s
arms. Under these conditions the infant learns that she can have an impact
on her environment. Just as importantly, this sets the stage for development
of trust and security, the beginning of a sense of mastery, and the beginning
of the ability to understand cause-and-eVect relationships. Of course, this
early line of development depends on the parents’ ability to understand the
baby’s cues and respond to them in a sensitive and suitable manner. Consis-
tent failure by parents to respond in this manner may interfere with this line
of growth. DiYculties of this sort may be overcome by consulting a quali-
Wed mental health professional.
How does discover- The other major intellectual development during infancy is the baby’s abil-
ing the world help ity to discover the world of toys and other objects, including people. This
a child develop begins before the baby can use his hands. It starts with the baby’s looking at
intelligence? things and people and tracking them with his eyes as they move around. In-
deed, by the time he is 3 or 4 months old, a baby can remember familiar faces
and toys. More importantly, the ability to engage in such tracking helps the
baby start to develop the concept of spatial relationships and the notion that
objects are “real.” The idea that objects are real is constructed during this pe-
riod when the baby becomes aware that objects disappear and reappear as
they travel around the environment. When the baby begins to use his or her
hands to reach and grasp things, there is a surge in the pace of development.
At this point, when the baby has a toy in his hands, he can look at it, feel
it, put it in his mouth, and listen to any noise it might make. In a like man-
ner, the baby discovers that the toy makes a noise or does something else
when he moves his hand. In this way the baby uses several sources of infor-
mation to get an idea of what the toy is like. Thus, the baby begins to form
ideas of objects that are similar (such as rattles) because they generally look
and feel the same when held, and they make a similar noise when the hand
is waved. By the same token, the infant also begins to discover that objects
are substantial or real because he can use his hands to recover them when
they fall or are dropped. Finally, the infant is further developing his sense of
cause and eVect, because he discovers that he can make toys do things that
are interesting and fun.
How can cerebral Cerebral palsy can have an impact on the infant’s ability to develop an aware-
palsy aVect these ness of shared relationships. Infants who are very tight and spastic, for ex-
experiences of ample, may have disruptive feeding patterns—they may have diYculty suck-
discovery? ing, for example. This could interfere with the baby’s ability to recognize
that there is a relationship between (1) his or her hunger pangs, (2) crying,
and (3) being soothed by food. A child who has very high tone and is tight
may also be prone to being fussy and irritable, and therefore may not be able
to appreciate his parents’ eVorts to soothe him at times of distress or upset.
He may not be able to recognize the relationship between feelings of distress
and their eventual decline.
The motor coordination involved in tracking people and objects as they
move about can also be aVected by cerebral palsy. The infant with either very
low or very high muscle tone may not be able to engage in the kind of coor-
dinated eye and head movement needed to do such tracking. Therefore, the
beginning stages of the development of visual memory, spatial relationships,
and so-called object permanence (the idea that objects are real and substan-
tial) may be delayed or distorted in some manner.
Cerebral palsy can also disrupt the early growth of object recognition and
the understanding of cause-and-eVect relationships. The reason is that this
early line of development normally hinges on the development of reaching
and grasping. The coordination between the feel and sight of the object
being grasped and whatever sound or action it produces when the hand is
moved or waved is essential. Developmental delays might be expected in
particular for infants whose disability aVects their ability to use their hands
to reach for, grasp, and manipulate toys and other objects. This would be the
case when at least a moderate degree of spasticity is present in the upper
trunk and upper limbs. Delays may also be seen in babies with extremely low
tone, however. In any case, infants can be helped to compensate for this
problem. Parents can show an interested infant how a toy like a rattle works,
and help the baby play with the toy. Likewise, toys adapted to the infant’s
needs (such as toys with special switches) can be used to foster this develop-
ment. Consulting a physical therapist, occupational therapist, or an early ed-
ucation specialist may be useful in helping parents stimulate their baby.
Ages One to Three

At this stage, the child becomes increasingly independent. At the same
time, he or she begins to master control of body functions and impulses.
Thus, the child learns to use the toilet successfully, and can also postpone
gratiWcation to some degree. This, too, is the time when the child begins to
play with other children and learns the foundations of give and take.
Intellectually, this period is marked by the child’s recognition that people
and objects are substantial and real, by a growing sophistication in the un-
derstanding of cause-and-eVect relationships, and by the ability to imitate.
There is also tremendous development in the child’s imagination, and she or
What are the he begins to use language.
main issues in
emotional and Children at this age display real evidence of emotional and social develop-
social development: they strive to be independent; they test boundaries and limits; they
ment? begin to learn to control their impulses and feelings. This is primarily why
children 18 to 36 months of age are described as going through “the terrible

two’s.” This is the period when intense feelings, especially anger, are played
out by the child, and children throw temper tantrums as a way of expressing
unhappiness and frustration.
Another hallmark of social development during this period is increased
socialization with peers. At this age, children move from being the lone ac-
tor on the stage (except for interaction with parents) to having at least one
playmate. Over the course of these two years the child comes to enjoy being
with children, learns how to share toys and other possessions, and learns
how to deal with his own feelings and those of other children in the context
of budding social relationships.
In some ways this period is marked by the struggle for independence as
well as the struggle to Wnd out where the limits are—all inXuenced by the
child’s temperament (and his or her parents’ temperament) and the child’s
sense of emotional security. A high-strung and highly active child, for ex-
ample, is generally more tempestuous and headstrong than a laid-back
toddler. A more easygoing toddler may not put up as much resistance to hav-
ing things done for him or having limits set on his behavior. A lack of secu-
rity and trust can either intensify or stiXe the striving for independence, de-
pending upon whether the child is highly anxious and defensive or not. The
rearing styles and personal attributes of parents (their patience and resilience,
for example) inXuence the ease with which both toddler and parent get
through this period of development.
How might cere- The child with cerebral palsy can have a diYcult time gaining a sense of
bral palsy aVect independence and learning self-control. Ordinarily children at this age de-
the child’s inde- velop a sense of independence by trying to do things for themselves (like us-
pendence? ing a spoon to feed themselves) and by moving about and exploring the en-
vironment. The child who does not have use of her hands or who cannot
move around (such as a child with diplegia or quadriplegia) may not be in a
position to assert her willfulness or growing sense of independence in a way
that would foster both a sense of autonomy and a sense of self-control.
Sometimes, too, issues of control between parent and child are played out in
an exaggerated fashion in any area where the child does have some power
(such as eating).
Other factors, such as mental retardation, can also impede this area of
development. Likewise, parents who have a hard time letting go of their
child, who cannot see the child as a person in his or her own right, and
who foster a great deal of dependence in the child may interfere with or
distort the child’s progress in this area. Finally, a child who by tempera-
ment is very passive or who perhaps has very low tone may Wnd it hard to
muster the energy to test limits or to get into things that would bring him
into confrontation with a parent and thus eventually promote autonomy
and independence.
How might cere- The toddler develops the ability to master feelings (especially anger and frus-
bral palsy aVect tration) and to control impulses by interacting socially with parents, other
the child’s self- adults, and other children. To some extent, because a child with cerebral
control? palsy may have restricted use of his hands and limited mobility, he may not
develop these skills as readily. However, these restrictions aren’t as likely to
interfere with the child’s development of self-control as much as they are
with his development of independence.
Cerebral palsy is likely to have an impact on how the parents confront the
child when he is angry or out of control, or when he cannot immediately get
a desired object at the very moment he wants it. Parents who see the child as
an individual, who let the child know they understand these feelings, and
who nevertheless, when necessary, exercise appropriate disciplinary tech-
niques are going to foster growth and promote the child’s ability to master
his feelings. On the other hand, parents who believe that they need to cod-
dle and cater to their toddler, perhaps because of his disability, are less likely
to help the child come to terms with strong feelings and impulses; this ap-
proach can delay or distort the child’s development of self-control.
What is cerebral The growth of peer socialization which takes place during this time is de-
palsy’s eVect on pendent on the child’s having access to other children. For a child with cere-
socialization? bral palsy, this access may be limited by the parents’ protectiveness, the atti-
tudes of other parents toward having their child play with a child who has
a disability, and the child’s own ability to keep up with other children in
play activities.
At about two years of age is an ideal time for a child to play with or be a
part of a peer group that includes children without disabilities, because most
children this age are very accepting of children who are diVerent from them.
They will usually adapt and adjust to the other child’s limitations if helped
to do so by a caring adult. This is easier to do with a child who has a mild to
moderate degree of motor impairment, but it is even possible to integrate a
toddler with a severe disability in the extremities if this is done with careful
planning. For the child without a disability, playing with a child who has one
teaches tolerance, patience, and generosity. The child with a disability has an
opportunity to learn that he can be accepted and to learn social skills.
It is important not to ask the disabled child to play with children who are
much older or who are much more advanced in social and intellectual skills.
(This is true for children whether they have a disability or not.)
What is normal At this age, most babies go through tremendous changes in their intellectual
intellectual devel- development. Indeed, the 3-year-old child barely resembles the child she was
opment like at at 1 year in terms of thinking and problem-solving skills. The major mile-
this age? stones of intellectual development that usually occur during this period
are the development of a sophisticated understanding of cause-and-eVect re-
lationships, the ability to imitate what has been seen and heard some time
after the incident has occurred, the ability to represent reality in internal
thought or images and through the spoken word, and the ability to use
speech as a way of communicating ideas and needs to other people.
The child continues to learn the concept of object permanence, which is
necessary before she can master verbal, spatial, and mathematical concepts.
It is not until the child comes to understand that toys and other objects still
exist when they are out of sight (a concept a 1-year-old cannot understand)
that she can begin to lump objects together by one or more common fea-
tures, can start to map out where things belong in the environment, and can
begin to count objects or order them along some physical dimension (such
as smallest to largest).
How does the The appreciation of cause-and-eVect relationships begins during the Wrst
understanding of year of life when, for example, the baby aimlessly waves his hand to produce
cause and eVect a sound from a rattle, and then realizes that it’s the hand shaking that causes
develop? the eVect (the sound). Children ages 2 and 3 play with much more advanced
toys (progressing from a busy box to a wind-up toy) and use more advanced
methods of problem solving (for example, to get things that are out of reach).
Indeed, this is when children Wrst use tools to solve problems (getting a chair
to stand on in order to get something that is out of reach, for example). By
the beginning of the third year, the child can solve a problem by thinking
about it and then getting what is needed to solve the problem. At this age,
solutions to problems are concrete; they are mainly carried out using motor
skills and materials available in the surrounding environment. Later the
child is able to solve mental problems.
What is the role of During this period of development, imitation and representation are tied to
imitation and each other. Indeed, the ability to represent internally some aspect of reality
representation? grows out of imitation. In this case, imitation means that the child can copy
an act that he has seen someone else do or repeat something that he has heard
someone else say. As the child matures during this period, imitation be-
comes increasingly more sophisticated in terms of the succession of acts and
phrases that can be copied and the amount of time that passes between the
time the child notes the activity and repeats it. Thus, imitative activity changes:
rather than precisely mimicking an action or spoken phrase immediately af-
ter seeing it or hearing it, the child now puts together internal thoughts or
images and creates his or her own sentences or actions.
The capacity to form images stems from repeatedly imitating the same
acts until, in a sense, they are committed to memory in the form of an inter-
nal picture. With maturation the child relies less on repetitive imitation to
form such images. These images are pictures or representations of aspects of
the growing child’s reality. It is the ability to represent reality in the mind that
allows a child to engage in diVerent forms of imaginary play, such as playing
roles (for example, pretending to be a doctor) or playing make-believe (for

example, having a tea party with friends). Of course, the ability to represent
reality increases with age and enriches the child’s play and thinking.
How does speech Speech development undergoes a signiWcant evolution during this time
develop? frame. For one thing, there is a dramatic increase in the number of words the
child can string together. The child progresses from an infant who has a few
words at her disposal to the 2-year-old who can combine two or three words.
As a 3-year-old she can very nearly hold a conversation: stringing several
words together in order to express feelings, thoughts, or needs. The com-
plexity of the communicative intent on the part of the child evolves from one
word expressing a need or describing an action to the use of phrases or sen-
tences that aid the child in expressing thoughts and ideas, in communicating
present and future needs, and in developing her relationships with adults
and peers. Likewise, the child, over this span of time, learns to put spoken
words in the correct order so that others can understand her better. The child
also develops the ability to engage in the give-and-take of social conversa-
tions in a culturally acceptable manner.
How might cere- Much of the intellectual development that occurs between 1 and 3 years
bral palsy aVect seems to rely on the coordination of input from the senses with movement
intellectual devel- (such as crawling or walking) and hand use. This is particularly true for the
opment with development of object permanence, cause-and-eVect relationships, and rep-
respect to these resentational thought. But it is also true for speech, because much of what a
skills? child knows and can talk about at this age comes from what the child learns
by doing.
As discussed before, the child with cerebral palsy may meet with diYcul-
ties in this area of growth because of limitations in mobility or hand use. De-
velopment could be even further jeopardized if there is any reduction or dis-
tortion in the input from the senses of vision, hearing, or touch. The child
who is disabled in a way that severely restricts her ability to move about
could show some delays in the development of object permanence and spa-
tial relationships. However, even in this case, the child who is capable of us-
ing her hands can overcome this kind of impediment. Thus, for example, the
baby who is able to search for and pick up a toy that falls from behind her is
getting the kind of information that will probably allow development in
these areas to proceed.
Impaired hand use is often a major obstacle to development in this area.
A child who has a great deal of spasticity in the upper extremities or through-
out the body may be more hindered in intellectual development than if only
his legs were aVected. This is because ordinarily the ability to manipulate
toys and objects and play with them in both familiar and novel ways is es-
sential to intellectual development. For example, losing and Wnding objects
stimulates the development of object permanence; making the jack-in-the-

box pop up stimulates recognition of cause and eVect; and giving the dolly
a drink is a way to learn imitation and representation. By the same token,
delays here can also aVect speech development in the sense that the child,
because of these drawbacks, may not form the ideas and concepts that most
children talk about at this age (not to mention that speech is a highly coor-
dinated motor activity that may be impaired due to the cerebral palsy).
How can a child Delays in intellectual development are not always inevitable when a young
who is severely child with cerebral palsy is severely disabled in hand usage. Some young chil-
aVected by cere- dren who have severe disabilities do overcome such major obstacles and
bral palsy be become intellectually competent. How this happens is not entirely under-
helped in these stood, although experts believe that the child’s inborn intellectual ability
areas? may have signiWcant inXuence. However, it may be the way that parents
bring the outside world to such a child or allow the child to interact with
toys and people that plays a signiWcant role here.
Parents who help the child play with toys or work with switches may help
the child overcome the barriers posed by the disability. By the same token,
parents who in a sensitive way help the child cope with the frustration of try-
ing to reach or manipulate toys and other objects are probably encouraging
the child’s intellectual development. Parents who support eVorts on the part
of a child who has these kinds of limitations are most likely building the
child’s sense of mastery over the environment as well as helping the child
learn to be persistent and diligent in the face of physical hurdles.
Finally, the process of talking to the child and, most importantly, actively
trying to understand the child’s attempts to communicate can facilitate the
development of ideas that might not otherwise come about in a child with a
severe motor impairment. Likewise, listening to such a child in a way that al-
lows the child to communicate, be it with language, gesture, gaze, pointing,
or signing, promotes in the young child the idea that communication is an
interactive and social activity.
Ages Four to Seven

These years are marked by an increase in the child’s investment in peer re-
lationships and forming friendships. It is also a time when the young child
begins to develop a sense of identity and a sense of right and wrong. At the
same time, the youngster is learning to reason concretely and to solve prob-
lems, and is beginning to master academic subjects such as reading and
mathematics.
What are the typi-
cal social and The child’s desire for autonomy and independence begins to manifest itself
emotional develop- in a diVerent way, as the child begins to separate physically from his parents.
ments? Socialization includes making friends with peers, typically of the same sex.
Indeed, this is an age when friendships and contacts with peers begin to play
an increasingly dominant role in the child’s life, starting a trend that will con-
tinue to gather strength and direction until at least the time of young adult-
hood. The move to peer friendships makes it more important than ever that
the child learn to share, to take turns in games and other pursuits, and, most
importantly, to see things through other persons’ eyes.
How does a sense A major development during this period is the child’s increased sense of
of identity develop? identity. The identity that begins to take shape at this age will be inXuential
in forming the child’s attitudes and aspirations for the future. Identity is of-
ten an important factor in shaping the child’s idea of what it means to be
male or female. Identity formation happens at this age, as the child begins to
identify closely with a parent or other signiWcant adult, typically of the same
sex. For example, a son may take on the personal characteristics of his father
or pretend to do some of the same things that the father does at home and
at work. This process continues throughout childhood but becomes sup-
pressed to some extent by the onset of adolescence.
What about the This is the time when the child develops a conscience and a sense of guilt.
child’s sense of The development of a moral sense depends upon the child’s intellectual ca-
morality? pacity, but its shape is a function of the values practiced and taught by par-
ents and other signiWcant adults and, to a lesser extent, by peers.
How might cere- At this point the impact of having cerebral palsy changes. The child’s senso-
bral palsy aVect rimotor abilities are less inXuential on development at this age than they
these areas of were in earlier developmental stages. Instead, what becomes increasingly
development? important is the child’s access to a range of social relationships.
SpeciWcally, children need to be around parental Wgures or other adults
who are nurturing and caring and who will serve as role models to reinforce
the child’s own identity. Parents and other signiWcant adults should work at
instilling pride in the child with respect to his abilities, whatever they might
be, and in his physical makeup, even though the child may be diVerent from
the majority of people around him. It’s important to help such a child rec-
ognize his disability and take pride in his accomplishments—it’s essential to
maximize self-esteem. One boy reXected back on his memories of his Wrst
awareness that he was diVerent from other children, and the process of com-
ing to terms with that realization:
The Wrst time I realized that something might be wrong with me was when I would
go for therapy. At Wrst, I thought it was a normal routine; I thought that everybody
did it. Then, as I got older, I realized it wasn’t something that other kids were doing.
I wondered what was wrong with me. I probably should have asked, but I don’t re-
member asking. I should have, but I think it would have been painful. I was sad. It
was hard knowing that something was wrong with me. I remember thinking, “Why
me? Why me?”
Another thing that I remember was when I realized that I had to have more op-
erations than other people. That was hard. Why did I have to do this? Why did I have
so much pain?
When I was very young, I also noticed that I still crawled while other kids were
able to walk. I decided that it just wasn’t my time yet to learn how to walk. Later I re-
alized that I wasn’t going to be able to walk. That made me sad. Getting a powered
wheelchair helped. Things are much better now. I’ve come to accept my disability,
and I will keep trying to Wght on to be the best I can be.
Ultimately helping the child understand and own his disability will help
the child to cope with any ridicule or rebuV he may encounter as a result of
his disability. To do other than help the child maximize self-esteem—and es-
pecially to try to make the child pass for being normal—is to lower the child’s
ability to cope with whatever emotional, social, and physical adversity he en-
counters while growing up with a disability.
Children with cerebral palsy also need to have the opportunity to be in so-
cial settings with children their same age, such as preschools or elementary
schools, in order to learn to relate to peers who aren’t disabled. The social
engineering that must be done to integrate a child into such a setting is far
easier at this age than later on. To some extent, moderate to severe sensory
or intellectual impairments make this harder to do, but even a child with
these impairments will proWt from having some kind of access to peers with-
out disabilities.
These arrangements also allow children without disabilities to learn to
accept the kinds of diVerences presented by people with disabilities. Ac-
ceptance can be encouraged by providing the child who has a moderate to
severe motor impairment with adaptive devices, such as computer-aided
communication devices, that make it easier for the child to participate in
classroom activities and to communicate with peers and teachers. Children
at this age who do not have disabilities can learn to be comfortable with
modiWcations made in classroom activities to accommodate the child with
cerebral palsy.
How does a child’s At this age, children generally begin to think, reason, and solve problems
ability to think using their toys and educational materials to help them. For example,
change over time? preschoolers learn to count and to sort and group objects by use (such as
things that bounce), by name (such as cars), and by physical attributes like
size and color. Children at this age are able to think about what they are do-
ing with their toys and other objects and sometimes invent new ways of us-
ing them. They are also able to think about their friends, recognize that their
friends and playmates have feelings of their own, and take these feelings into
account in their peer relationships.
In general, this is a period when thinking becomes more abstract, but
the child still must rely on objects to support her thinking. The develop-
ment of such thinking skills is essential to the child’s early academics (count-
ing and letter recognition, for example) and to her later ability to think more
abstractly.
What is the role of Language spoken by the 4- to 7-year-old resembles adult forms of speech in
speech? terms of grammar, since the child’s grammar at this age is nearly as sophis-
ticated as an adult’s. By this time most children have acquired an extensive
vocabulary corresponding to the world around them, although the child
does not yet have the vocabulary of an adult. Finally, it is at this point that
the child becomes aware of the speaker-listener relationship and begins to
learn the rules of conversation so that he can eVectively communicate with
others. Development of language skills—grammar, vocabulary, and rules of
conversation—is of course important for the child’s ability to communicate,
but it also plays a signiWcant role in his ability to learn how to read and write.
What kind of During this period, intellectual development usually progresses through
impact can cere- play and schooling. Cerebral palsy may interfere with development in this
bral palsy have on area because it may interfere with integration of the child’s motor and
these developmen- sensory skills. A child who has severe to moderate impairment (such as
tal issues? spasticity) involving the upper extremities may have diYculty engaging in
the kind of play that ordinarily results in the ability to think about how
diVerent things relate to one another. Other factors such as native intelli-
gence can work in such a child’s favor, that is, the brighter the child, the more
likely he is to learn these thinking skills, even with minimum input from his
own eVorts.
The child’s eVorts to learn from play should be promoted by parents and
others who can support the eVort to manipulate educational materials. Pro-
fessional therapists who work with the child can provide some of this en-
couragement. Toys and equipment can be adapted, too, to Wt the needs of a
particular child. She can also be encouraged to experience play vicariously,
by watching other children. The overall goal is to help children with an im-
pairment experience this level of play in some way, so that the impediments
to intellectual growth posed by their disability are diminished.
Unlike intellectual development, the development of communication
skills is very closely tied to social interaction. To develop communication
skills, a child with cerebral palsy—especially one with a moderate to severe
degree of motor involvement—must have the chance to relate to people in a
way that encourages communication and teaches the child the rules of con-
versation. But speaking is only one way of communicating. The child with
cerebral palsy may have to rely on gesture, signing, or a communication de-
vice to “talk” to others. All eVorts to communicate, whatever form they take,
should be encouraged at this age. If language skills and relationships with
friends who are not disabled aren’t fostered until later on, the child with lim-
ited ability to communicate may Wnd that his peers have less patience with
his limitations.
Ages Eight to Twelve

During these years the young child is working on peer relationships and
reWning her sense of right and wrong. It is also a time when the child be-
comes more independent of her parents in terms of activities and relation-
ships. Finally, it is a time when a great deal of energy is devoted to schooling
and to learning the basic academic skills involved in reading, writing, and
mathematics.
What are the Personality, peer relationships, and the development of a sense of morality
social and emo- take on more importance. In the early years of this period, the family still has
tional milestones a major inXuence on the child’s personality and moral development. Values
of this age span? embraced and expressed by peers also contribute to the child’s emotional
and social development. Indeed, by age 12, a good deal of a child’s personal-
ity and moral sense has usually been formed. The child’s own inherent or
constitutional makeup also inXuences this development.
Especially toward the end of this period, the child develops relationships
and friendships, particularly with children of the same sex, that last for a long
time, sometimes for a lifetime. The child’s social world begins to be domi-
nated by friends rather than by his parents. The child’s friends begin to serve
as important models in terms of gender roles and in terms of determining,
in some part, the child’s interests, social mores, and value systems. Since
choice in friends is to some extent inXuenced by values already established
by the family, this wider social network and its inXuence is typically consis-
tent with the child’s family background.
What about This is also a period during which the child gains greater freedom from the
increasing free- home and becomes less reliant on parents for entertainment. The child be-
dom at this age? gins to learn how to get around the neighborhood and the community by
himself. He may travel to school independently of his parents and, in a few
years, he may go shopping or participate in social or sports functions with-
out always having one or both parents present.
How does cerebral Cerebral palsy can inXuence social and emotional development since it some-
palsy aVect these times has an impact on peer relationships. A child with a motor impairment,
developments? especially if it is moderate to severe, may be impeded in her ability to get
around with her nondisabled peer group. Also, the kind of activities that
bind children together at this age involve the ability to converse freely with
one another and often involve the use of both the legs and the hands (in
sports activities, for example). Thus, a child who lacks the motor ability to
talk, or whose movement is impaired even to a mild extent, may have less ac-
cess to peers and peer socialization.
Another reason cerebral palsy may aVect this line of development is that
the child begins to stand out as being diVerent from most children his age,
and marked physical and mental diVerences sometimes result in the child’s
being rejected by children who don’t have disabilities. Even the child with a
very mild degree of cerebral palsy may be socially isolated.
What qualities There’s no question that the child with cerebral palsy must have a lot of
enable the child to courage and determination to deal with the possible rebuVs, cruelty, and re-
cope best with these jection she will encounter. The child must reach out for people in spite of re-
stresses? jection, and must continue to want to achieve in school and other settings.
In order to do this the child must already have a very strong, positive self-
image. In fact, this is probably the determining factor for keeping the child
moving ahead during this and the next phase of life (adolescence).
What can parents To achieve this kind of positive self-image, the child needs to have—and to
do? continue to have—parents or other signiWcant adults who nurture and care
about him and who see him as a person in his own right. Parents should
promote interactions between their child and adults and other children by
introducing him into settings where peer interaction is more likely to be
successful. The child may need to use adaptive devices to achieve better
communication, mobility, and hand usage. Parents must begin early in their
child’s life to encourage and reward him for mastering a variety of social and
play situations and for all the special talents the child may possess.
During this period, the child with cerebral palsy needs his parents to be
available, to listen when he is wounded by peer rebuV or cruelty. Given
proper support and encouragement, the child can eVectively communicate
and vent his feelings. The parent can help the child understand why other
children behave this way and, more importantly, can interpret such incidents
in a way that does not undermine the child’s self-esteem and self-image.
Finally, parents, during this time, must continue to be eVective advocates
for the child. In the area of social and emotional growth, this means allow-
ing the child access to peers who are likely to be accepting. It may mean, in
some instances, Wghting hard to prevent the child’s segregation into a special
school or a restrictive classroom setting: the child who is in a regular class-
room beneWts from having relationships and friendships with children with-
out disabilities who are at his social and intellectual level. It may also mean
that parents and other signiWcant adults have to challenge the child at times
to behave in ways that will foster such relationships. Parents may need to
seek the help of a skilled counselor to guide them and their child through
what can sometimes be a turbulent period of life.
What are the The major intellectual tasks for children during this age occur at school,
major intellectual where they learn to read, to express themselves in written language, and to
tasks at this age? perform fundamental mathematical calculations. Additionally, this is the
time when the child learns to accept the structure and rules of the classroom
and to obey the teacher.
How can this Cerebral palsy can aVect schooling and classroom learning in a number of
stage of develop- ways. The level of the child’s intelligence and, as a corollary, the child’s abil-
ment be aVected ity to learn is scrutinized at this time, especially for children with a severe
by cerebral palsy? disability. It is diYcult to evaluate the intellectual ability of the child with re-
stricted hand use and limited speech, and it is not uncommon for such chil-
dren to be judged as intellectually less proWcient than they are. Inaccurate as-
sessment frequently results in inappropriate classroom placement.
Many of these children have disabilities that make it diYcult to assess
what they know and what they have learned. Indeed, it is important to make
a distinction here between learning and performance. It is likely that many
children with cerebral palsy with moderate to severe impairment can learn,
sometimes on a par with their peers. The problem is that the child cannot
communicate this to others by writing or speaking.
Children with cerebral palsy may have other subtle impairments that in-
terfere with learning and performance in the classroom. Some children have
a learning disability such as dyslexia (normal vision but an inability to inter-
pret written language), which is tied to their central nervous system disor-
der. Some children may also, for the same reason, have short attention spans
or the inability to store or retain knowledge. Finally, the child with cerebral
palsy may have a limited ability to accept adult authority and classroom rules
and structure, depending upon how much past opportunity the child has
had for this kind of interaction.
A child who has had the earlier experiences of learning to share with peers
and to accept rules when playing with other children will have an easier time.
By the same token, the child who has learned to accept the authority of his
parents and to take responsibility for his own acts will Wnd it much easier to
be an active and appreciated participant in the classroom.
How can teachers Educators Wrst must identify children who cannot demonstrate their level of
and parents help? learning. Then they must provide the child with the means to get over this
barrier. This can be accomplished by providing her with suitable alternatives
for expressing or demonstrating what she is learning. The child might do
very well working at a computer, for example, or using computer-assisted
communication devices. Sometimes a tutorial or one-on-one session be-
tween a teacher and the child is the best way to unblock communication.
Also, parents need to be aware of possible problems with reading, and teach-
ers should be on the lookout for telltale signs of such problems and be avail-
able for extra help. When teachers and parents are insensitive to a child’s in-
dividual learning capabilities, they may condemn the child unnecessarily to
academic failure, and this may lower self-esteem and decrease the motiva-
tion to learn.

These years are more often than not marked by emotional turbulence.
During this period the adolescent struggles with self-identity, with increased
physical and emotional independence from parents and family, with sexual
impulses, and with the growing inXuence of his or her peer group. Likewise,
the adolescent’s thinking, problem-solving, and reasoning skills often move
from the concrete to a more abstract and mature level. Finally, during this
time, youngsters are beginning to make career or vocational choices that
may carry into adulthood.
What are the pri- Sooner or later, almost every adolescent goes through a stormy period. The
mary areas of major issues of the turbulent teens include striving for independence and au-
social and emo- tonomy, the increasing importance of peer relationships, and, most of all,
tional develop- managing the surge of sexual feelings and impulses.
ment? It is during this period that many young people gain a conclusive sense of
their own identity and autonomy. It is also the time when young people gain
mobility, as they are increasingly able to come and go from their homes and
other places in the community without continual adult supervision. Social
activities at this age often do not include parents or other family members.
Most young people at this age form long-term friendships with peers that
in some cases last a lifetime. Indeed, the young person typically develops a
social circle of peers who help deWne her interests and recreational activities
and to some extent dictate who and what is socially acceptable and unac-
ceptable. Being part of a peer group often leads young persons to rebel
against family and cultural traditions and expectations.
During this period, sexual feelings and impulses develop, and adolescents
begin to recognize and express them. Sexual expression often develops
against the backdrop of family, religious, cultural, and peer group values—
value systems that are frequently at odds with each other. The young ado-
lescent also begins to recognize his sexual identity and orientation and
starts to come to terms with it in some fashion. Adolescents begin to de-
velop relationships that have sexual overtones, typically involving members
of the opposite sex. This ushers in a period of dating, of expressing sexuality
with someone else (including often deciding if and when one should be-
come sexually active), and moving into short- and long-term relationships
with a partner.
In what ways can As previously mentioned, motor impairment that interferes with mobility
cerebral palsy have and communication can restrict autonomy as well as access to peers and
an eVect on these members of the opposite sex and the expression of sexual feelings and im-
areas? pulses. Likewise, severe or profound intellectual deWciencies often diminish
interest in sex and the expression of sexual impulses. But in many cases the
impediments to full development in these areas are more emotional and so-
cial than physical. The young adult with cerebral palsy may already have en-
countered so much rebuV and ridicule from peers that he or she is afraid of
rejection or failure and therefore is unwilling to take a chance on dating or
intimacy. Thus the experiences that normally lead to a mature expression of
sexual feelings are often avoided or put oV until sometime later.
Growth may also be hindered by lack of social access. For some adoles-
cents, social isolation (due, for example, to the adolescent’s need to attend a
separate school) may be the reason there is not much opportunity for inter-
action with peers, and especially with potential sexual partners. But lack of
opportunity for interaction may also be due to the fact that young people
with cerebral palsy, regardless of type or severity of disability, are often
viewed as “diVerent” by able-bodied peers and thus are rejected. Sometimes
such a young person is accepted only in a very limited sense—he or she may
be seen as a great pal, for example, but not as a prospective dating partner
(this is particularly true in early adolescence).
Most young adults with cerebral palsy have the same sexual feelings
and impulses as their able-bodied peers. Denying this—which happens fre-
quently—robs young people with cerebral palsy of their dignity and their
right to experience the fullness of life. It is therefore essential that parents
and other signiWcant individuals give these young adults the opportunity,
over time, to explore and express their sexual nature, within the context
of the family’s value system. Professional advice and counsel can be invalu-
able here.
What are the One of the hallmarks of this period is that the young person develops the
major characteris- ability to think abstractly. This means that ideas, words, and other abstract
tics of intellectual symbols dominate when the individual is trying to solve a problem. The
development at ability to think abstractly is seen in the young person’s schoolwork (when
this age? doing algebra problems, for example) as well as in social relationships, where
more abstract moral and ethical considerations color how young people re-
late to one another.
Whether or not an individual can reach this stage of thinking is partly de-
pendent on her or his mental abilities. However, every individual needs a
great degree of social and intellectual experience, as well as schooling, before
being able to reach this stage of thinking. Individuals who are delayed in
their intellectual development, and particularly those who are mentally re-
tarded, either will be delayed in reaching this stage of thinking or will never
actually reach it.
Another signiWcant milestone that occurs during this period is that young
people begin to make and sometimes Wnalize their vocational and career
choices. Adolescents, especially by the time they get to high school, typically
start making choices that will lead them into a trade or profession. Choices
here are often dictated by the young person’s interests and talents, but these
factors may be circumscribed by family background and tradition, perceived
gender roles, and ethnic and socioeconomic considerations. Encourage-

ment and nurturing from parents, other signiWcant adults, other family mem-
bers, and friends may also inXuence a young person’s career aspirations.
How might cere- Cerebral palsy may or may not aVect the young person’s capacity to engage
bral palsy aVect in abstract thinking and problem solving. For example, the young person
this development? who has a disability that has produced moderate to severe intellectual deW-
cits most likely will not attain this level of thinking. Associated visual, hear-
ing, or learning handicaps may also delay or inhibit such development. How-
ever, many people with cerebral palsy, even those with signiWcant physical
impairment, have normal intellectual abilities and can achieve a great deal,
as this letter from one child with CP testiWes:
My name is. . . . These are my thoughts on obtaining membership in the Order of
the Arrow and the rank of Eagle Scout.
When I was sworn into Scout Troop 652 on . . . , I didn’t really know what to ex-
pect. I wanted to explore things for a bit. At that time I remember one of my friends
was going to get his Eagle rank. I was, of course, happy for him, but I didn’t know
what it entailed. I went to his ceremony. When I saw all they gave him and did to
honor him, for the Wrst time in my life I wanted that—badly. I knew that I would
have to try my best to get it. I knew that you couldn’t get Eagle after you turned 18,
and I was 14. I only had a few years to work on this. After one camping trip, I re-
member coming home and saying to my father, “Dad, I want to be an Eagle.” And so
we went to work. Dad agreed to help me. I attacked this like I never worked on any-
thing before. I realized this was something I could do. I can’t play football or any
other sports, but I knew I could do this.
Now, it is 3 1⁄2 years later and I am waiting for my ceremony. My badges are com-
plete—25 of them. I worked on three projects for the three highest ranks. For Star
projects, I raised $6,500 to have a hydraulic lift installed on the Scout bus. Before that
my Scoutmasters would have to lift us, our wheelchairs, and all the gear for the camp-
ing trip into the bus. For Life project I painted, with lots of helpers, an auditorium
in the church where our troop meets. For Eagle project I realized the need to have
badge books put on cassette tapes. This is how I did all my merit badges, because of
my vision problems. My father recorded the ones we did at home, and I used those
plus several more that Scout friends recorded for me.
On September 18 I passed the Eagle Board of Review, which is the Wnal test be-
fore the National Council scrutinizes the folder with the application, the summary
of projects, and letters of recommendation. I feel that I have achieved a lifelong
dream. It makes me feel fulWlled and proud. This is the one thing that I tried and
came out successful. I can say to any other disabled kids who are thinking about do-
ing something and are not sure they can, “Try your best. Don’t give up. If you do it,
great! If you don’t make it, at least you know you tried your darndest.”
Many factors inXuence the young adult’s ability to attain the capacity
for abstract thought. Previous stimulation and social experience can either
aid or stunt such development. Access to appropriate schooling can also
promote or arrest the child’s progress toward attaining this kind of think-
ing ability.
The impact of cerebral palsy on vocational and career decisions has many
facets. Again, signiWcant impairment in intellectual, learning, visual, or hear-

ing capacity may ultimately restrict the kind of education and training the
child receives and, as a result, limit the vocational choices the young person
can make. But even the less involved child or the child who is bright but
quite physically disabled may face unnecessary limits on choices. In this case,
it is vital to recognize, early on, the child’s potential and to assist him (with
therapy and educational assistance) to overcome these barriers to more fully
develop his abilities.
What can be done Children with cerebral palsy must be able to obtain an education that will
to help children put them into a position to exercise their choices as widely as possible. This
overcome these again means that parents and other signiWcant adults must, on the one hand,
problems? advocate for the child’s appropriate educational needs and, on the other
hand, provide the child with the assistive devices, aids, and tutors that may
be necessary for him to learn and express what he knows. The child needs to
be stimulated and challenged educationally while at the same time people
who matter to the child must consistently motivate him or her to persist in
the face of whatever odds are stacked against short- and long-term success.
It’s important not to undersell or oversell the child. Thus, good counsel-
ing and assessment are important in the decision-making process. Likewise,
every attempt must be made to insure that, as he grows toward adolescence,
the child is exposed to the social world in a way that enables him to interact
appropriately with people in a variety of situations. Good social skills are a
signiWcant determinant of the young person’s access to employment. Finally,
it’s important to know and understand the laws with regard to the disabled
person’s right to an appropriate education and to employment without dis-
crimination. The parents and child who understand their rights in this re-
gard are going to be in a better position to advocate for the young person
with cerebral palsy to attain his or her ultimate career or vocation.
Adulthood
The major issues of adulthood revolve around the formation of long-
term relationships such as marriage, the direct expression of love and sexu-
ality, the raising of children, and Wnding a job or career that will Wrmly es-
tablish independence.
Most adults who are able to express sexual feelings and impulses are
interested in settling into a suitable relationship. This involves Wnding a
partner, making a commitment, and, often, working toward making it a
long-term relationship. Such relationships are dependent on communica-
tion; only through communication can needs of the involved individuals be
met. And relationships are composed of practical issues as well as emotional
ones. Decisions about child bearing, child rearing, household responsibili-
ties, and Wnances must be made and carried through.
How might cere- For adults with cerebral palsy who have adequate intellectual skills, quality
bral palsy aVect of life and adjustment are inXuenced more than anything else by the atti-
adult developmen- tudes they hold about themselves and by the attitudes of able-bodied people
tal issues? toward them. It is true that moderate to severe motor impairment of any
kind, particularly if it extends to all areas of functioning, can be a stumbling
block in working out a long-term relationship, having sex, and rearing chil-
dren. However, the willingness of each partner to explore these limitations
and to seek out the appropriate professionals (such as physicians, therapists,
and psychologists) who can help the couple confront the physical barriers to
a meaningful relationship can go a long way to overcome such problems.
What is crucial, then, is a sense of self-esteem and self-worth in the indi-
vidual adult. For many, if not most, adults with cerebral palsy, it takes a good
deal of strength, persistence, and courage to socialize with adults without
disabilities, and to reach out to try to form relationships that are deep and
lasting. For it is likely that most individuals with cerebral palsy will have en-
countered, at some time in their lives, some degree of rejection and even cru-
elty when trying to form friendships.
The physical disability of the adult with cerebral palsy may create some
obstacles to employment. The more the impairment limits mobility, hand
use, or communication, the greater these obstacles will be. Nevertheless, as-
sistive devices like computers can be used to integrate the adult with cerebral
palsy into the workplace. Again, it is important that individuals become
familiar with federal and state laws governing employment of the disabled
so that they can act to make certain that their opportunities are not being un-
fairly—and unlawfully—limited.
What tools are The adult needs the kind of self-esteem and strength that allows her to
most important to weather rebuV and rejection while continuing to risk Wnding friends and
the adult with partners. The sources of self-esteem and persistence have been discussed
cerebral palsy? throughout this chapter: these attitudes come from being loved and held
in high esteem by family members and friends, and from being seen as a
person with talent, value, and skills that can be put to use in the everyday
world. An infant, child, adolescent, and young adult who has support from
parents, friends, and perhaps an encouraging counselor is better prepared to
handle problems.
The attitudes of able-bodied people toward the adult with cerebral palsy
also play a role. It is likely that some adults with cerebral palsy only Wnd a
limited number of people who are available for friendships, and perhaps
even fewer who are open to sexual or long-term relationships. Again, high
self-esteem, courage, and persistence are important assets for the adult with
cerebral palsy. Likewise, such adults beneWt from having had experiences
with peers in late childhood and in adolescence that taught them appropri-
ate social skills.
Finally, it is important for parents, relatives, and other signiWcant adults
in the individual’s life to recognize that this person is going to experience the
same need for a sexual outlet and a loving relationship as anyone else. Dis-
ability should not automatically exclude young adults from experiencing the
fullest measure of life possible; therefore parents, relatives, and friends must
encourage and pave the way for such experiences, rather than prevent them.
In addition to job-related training, the adult needs good work skills and
the ability to get along with others in the workplace, both of which are
known to be highly related to success and stability on the job. Again, the ex-
periences the child has all through the growing-up years inXuence his or her
ability to succeed as an adult.
In this chapter we have described how cerebral palsy aVects intellectual and
psychological development. We have seen clearly that the life pattern for the
person with cerebral palsy is set early. In the end, parents and the person with
cerebral palsy walk a Wne line throughout life in terms of expectations. It is
easy to set them either too high or too low. There is no easy way to manage
this tightrope act. Seeking appropriate counsel from physicians, therapists,
and other professionals along the way is often helpful, but in the Wnal anal-
ysis, both parents and child need to know when to forge ahead and when to
pull back if the stresses and barriers are unmanageable. The real goal is to
help children with cerebral palsy grow into adults who feel good about them-
selves and their abilities, adults who are fulWlled because they are able to ex-
perience the joys and disappointments that life has to oVer.
Hemiplegia
5 ♦ H E M I P L E G I A is a form of cerebral palsy in which one arm and

one leg on the same side of the body are aVected. The majority of children
with hemiplegia have normal intelligence, go to regular, age-appropriate
schools, can expect to have relatively normal function as adults, and have
few problems beyond the physical diYculties of the arm and leg that are
involved.
The term hemiplegia is sometimes more broadly used to describe children
with mild involvement of one limb (also called monoplegia). A child whose
primary motor dysfunction involves both legs and one arm may also be
diagnosed with hemiplegia, although this pattern is more properly called
triplegia. Double hemiplegia is a sometimes confusing term that is used to de-
scribe cerebral palsy when it aVects all four limbs but with asymmetry be-
tween the right and left side. Children with this diagnosis have very diVer-
ent physical problems from the problems of children whose CP involves
only one side of the body, and more closely resemble those with diplegia or
quadriplegia.
If your child’s CP involves one arm more than it involves the legs, then
this chapter will appropriately address most of your issues of concern. How-
ever, Chapter 6, on diplegia, better addresses issues concerning a child whose
more severe involvement is in the legs, and a child with double hemiplegia
who can walk. Chapter 7, on quadriplegia, is most relevant if your child can-
not walk.
What does hemi- For most children with hemiplegia, the arm is usually more aVected than
plegia usually look the leg, and the problems are usually worse at the end of the limb. The child
like? with hemiplegia has a harder time with hand and wrist movements than
with shoulder function, and problems with the elbow fall somewhere in
between. Similarly, the child’s foot and ankle present more diYculties
than his knee. Hips are seldom signiWcantly involved. The child’s most
signiWcant problems are usually related to spastic muscles and decreased
growth of these spastic muscles. This growth abnormality causes the muscles
to be short and the joints to be stiV, so that as the child grows, he has pro-
gressively less range of movement in the aVected limbs.
124 ♦ hemiplegia
Birth to One Year

What physical abilities can the newborn’s parents expect to see? At Wrst
the infant’s hands and legs function only immaturely, and the infant has poor
trunk control. As the Wrst year of life progresses, however, the infant rapidly
develops many new abilities—though of course diVerent infants develop
these abilities at diVerent ages and in diVerent ways. This is an exciting time
for parents. Because of the natural variation in development and the rapid
changes that are taking place, mild abnormalities often go unnoticed by par-
ents and physicians alike.
Can hemiplegia The diagnosis of hemiplegic cerebral palsy is very seldom made in the Wrst
be diagnosed at year of life, primarily because it is virtually impossible to determine conclu-
this age? sively that a child has hemiplegia at this young age. A child’s Wrst year is a
diYcult time for parents if they suspect that their child has a problem. Be-
cause it is often easier to deal with bad news than it is to handle an unknown
diagnosis and the waiting that’s required before the outcome can be deter-
mined, many parents push for an early diagnosis. But the only reliable way
to determine the outcome of a child who has a brain injury is to wait and see.
That, unfortunately, is what parents of such a child must do.
Predicting the future outcome for the child who has been diagnosed with
a birth abnormality that is not speciWcally related to a syndrome or a more
speciWc diagnosis is only slightly more reliable than an educated guess.
When a syndrome is identiWed or a speciWc diagnosis is made (such as Rett
syndrome, Tay-Sachs disease, or trisomy 18), much more accurate predic-
tions can be made, because these syndromes tend to follow a more pre-
dictable course. Cerebral palsy is not predictable in this way, because it is not
a disease or due to a speciWc chromosomal abnormality. The symptoms de-
pend on where the brain damage is, and this cannot always be seen even on
the most sophisticated brain-imaging techniques like MRI.
Some parents have been prepared for a diagnosis of severely involved
cerebral palsy, particularly when their newborn has been premature or has
had intracerebral bleeding, only to Wnd that at age 4 the child has mild hemi-
plegia. In contrast, some parents who have been told their child will be nor-
mal, or at most mildly aVected, discover at an older age that the child is more
severely involved. In cases such as these, the conclusion must be that the ini-
tial diagnosis involved an incorrect prediction; these outcomes should not
be interpreted to mean that the initial brain injury has changed in any way.
When a child is diagnosed at a later age, and with reliable criteria, predic-
tions about abilities will be more accurate; parents should not be anxious
that the prognosis will become worse over time.
As a parent, what
early signs can I If your child has very mild hemiplegia, there are usually no noticeable signs
watch for? or symptoms, with the exception of early hand dominance. Left- or right-
hemiplegia ♦ 125
hand preference is usually not well established until 18 to 24 months of age

in a normal child. Therefore, if your 5-month-old always reaches out with
the same hand for toys or food, you should talk to your child’s pediatrician.
The normal hand is the one your child is using; the involved hand may be
held in a Wst most of the time, or you may notice that one arm or leg seems
stronger or stiVer than the other. The Wsted hand or the tightly held thumb
is usually Xexible and can be gently pulled out, but this is evidence of early
spasticity in the involved limb, which gradually increases as the child
grows. The position is sometimes referred to as a contracture, even though
it is Xexible.
If the arm appears weak or does not move normally, this may be a sign
that the nerves in the infant’s shoulder were stretched during birth. If your
child has this condition (called Erb’s palsy), you’ll notice that he usually
moves his Wngers well but does not move his arm from the shoulder nor-
mally. Diagnosis of Erb’s palsy requires a neurological evaluation. This con-
dition should not be confused with cerebral palsy.
The child of 4 or 5 months who shows an unwillingness to use a hand or
who consistently holds a Wsted hand should be evaluated. However, a full-
scale evaluation, which includes the appropriate scans, might not show a
deWnable abnormality, even though the child clearly appears not to function
normally. Scans taken at this early age do sometimes reveal cysts or other
deformities in the brain, but these Wndings may have very little meaning in
terms of the severity or pattern of involvement of cerebral palsy.
Between the ages of 5 and 8 months, children start sitting. Children with
hemiplegia have a tendency to fall to the side aVected by CP. They may real-
ize that they are falling, but they may have trouble reaching out with their
involved hand in order to stop themselves. As their balance improves, how-
ever, these children are able to sit very well. In the more severely involved
child with hemiplegia, the ability to sit well may be delayed until 16 to 18
months. However, all children with classic hemiplegia eventually become
good sitters.
As the child starts crawling “commando style,” the involved side is often
held in more rigidly at the hip, knee, and elbow. This position makes it look
like the child is holding the aVected side more closely to his body. It may
even look as if the child is dragging this side.
Children with a mild hemiplegia may walk by 11 to 14 months of age.
Many children with hemiplegia walk late, however, and many of them start
walking on tiptoe. If your child walks late and continuously walks on his
toes, these are two strong indications your child has CP. As he develops bal-
Are there any ance and conWdence in walking, he may very well outgrow toe walking.
treatments avail-
able for children For a child with these early symptoms, a thorough medical evaluation
who show these should take place, by the child’s pediatrician or by a specialist such as a pedi-
signs? atric neurologist or developmental pediatrician. If the diagnosis of CP is
126 ♦ hemiplegia
made, then referral to a therapist is indicated. The primary treatment for the
5-month-old who shows an unwillingness to use a hand is to present the
child with toys directed at the aVected hand or with toys too large to hold
with only one hand, such as a large ball. Finger foods can be presented in the
same way. Some extra care may be necessary in opening and cleaning the
Wsted hand. Occupational therapists are the ones who will direct therapy for
the child with an aVected hand.
For the most part, however, your child should be treated like a normal
child. One exception is a child with an extremely tightly Wsted hand. In a
child at this young age, an extremely tightly Wsted hand occasionally requires
a splint. Only in a child with severe CP do hand contractures occur at such a
young age.
If your child is having problems crawling, this is a good time to start see-
ing a physical therapist. Advice from these experts can provide you with
both direction and reassurance. Special braces or shoes are not needed at this
age unless the child is trying to walk and is a persistent toe walker.
Is a walker recom- Some parents enjoy seeing their child moving about on her own in a sling-
mended? seat walker, but parents need to supervise the child very closely to prevent ac-
cidents. One safety guideline is to tie the walker to a post or piece of furni-
ture, to limit the distance the child can travel. It is essential that a child in a
walker stay away from stairs, as this is where most accidents occur. Also, the
walker must be one that is engineered to be stable. Many physical therapists
don’t recommend walkers because they are concerned that bad movement
patterns will be reinforced. Many pediatricians discourage use of such
walkers for all children because of the danger that the child’s mobility in
the walker will lead them to fall oV porches or down stairs, resulting in se-
vere injuries.
The use of a sling-seat walker will not teach the child to walk sooner and
can create dangerous situations. There is no evidence that the use of walkers
does any long-term harm, however. The walker will not prevent a child from
learning to fall, cause foot or hip problems, or delay the time when the child
is able to walk independently.
Ages One to Three

During this period most children with mild hemiplegia are diagnosed,
usually because they are toe walking and have not started to walk by age 15–
18 months, or because they are more clearly not using one of their arms nor-
mally. If it hasn’t been done before now, a full neurological evaluation is nec-
essary, although it may not reveal any deWnable problem in the brain. The
main reason this type of evaluation is recommended is not to Wnd a cause of
the cerebral palsy, but to be certain that no other condition is causing the
child’s symptoms. If there is a condition other than cerebral palsy, then it
hemiplegia ♦ 127
needs to be treated properly. Another reason for an evaluation at this age is

if the parents are considering having another child and they want more in-
formation about the cause of their toddler’s problems.
In many ways, caring for the child with hemiplegia at this age is not much
diVerent from caring for the child without a disability, except that it may be
a little harder to determine the proper level of expectation. But parents can
work with health care professionals to develop a level of expectation which
is consistent with the individual child’s ability. This is usually established by
consulting with occupational and physical therapists, who often oVer valu-
able counseling.
For example, it’s not reasonable to expect any 6-month-old to eat with a
spoon. Most parents know this from talking to other parents, consulting
their child’s pediatrician, or reading books. It is just as unreasonable to ex-
pect the child with severe hemiplegia to hold a cup in the midline (at the
middle of the body) if the child is physically unable to hold a cup and bring
it there, even at age 16 months. Parents need help from professional thera-
pists to learn what to expect from their individual child at each stage of
development, such as when the child might be expected to bring the cup
to midline.
How should the During this period it is important to present your child with toys that re-
aVected hand be quire two-handed manipulation and that stimulate your child to use the in-
treated? volved hand, even if only to assist the good hand. Give your child toys
such as large stuVed animals or large balls and dolls too big to hold with
one hand. Encourage her to hold a bottle or cup with both hands if she is
able. Don’t try to force your child to do anything that she is physically
unable to do, however. If your child can’t open her aVected hand to hold a
large bottle, then it is better for her continued development to get a bottle
that she can hold with one hand, such as those that have an open split in
the middle. A physical or an occupational therapist can make equipment
recommendations.
At this age the development of Wne motor skills can be encouraged by
playing with your child in stacking blocks and putting pegs in holes. It’s
diYcult to get your child to do these activities with the involved body part,
especially if she is not motivated. It’s best to encourage her in these activities
but not to push her to the point of frustration. If your child refuses, the re-
fusal is probably due to her impairment; it’s not possible for her to do this
task at this time. As your child continues to grow she may suddenly begin
doing activities such as these with the involved hand, though much later
than she did them with the normal hand.
Because each child is an individual and there are no tests that can deWne
expectations for a speciWc child with CP, it’s important to work with a ther-
apist and a physician to help deWne these abilities. They may also be de-
pended upon to make suggestions about hand braces.
128 ♦ hemiplegia
When and how Generally, the Wsted posture in which many children with hemiplegia hold
are braces used for the hand starts changing as they reach 2 or 3 years of age. This is also the time
the hand? when muscles start tightening up, and it is the right time to consider brac-
ing. The brace is used to prevent the muscles from becoming tighter.
There are a number of diVerent braces for the hand. The two most fre-
quently used are those that are designed to keep the thumb out of the palm
and those that are designed to keep the Wngers and wrist extended. The
speciWc design used depends on the experience and philosophy of the thera-
pist and physician, as well as on the needs of the speciWc child. Generally,
hand braces are very well tolerated by children in this age group, but they
usually do not improve the hand’s functioning.
One drawback of the brace is that it reduces the feeling or sensation in the
hand, which can make a child ignore the hand even more. At this age your
child is developing use patterns, so it is not a good practice to keep the hand
covered by a brace all the time, as this encourages the child to ignore it dur-
ing play. At this age, too, muscles generally don’t become tight quickly, and
function often improves nicely if the child is encouraged and not restricted.
For these reasons, the brace should be used only at night or for short peri-
ods during the day.
Is there any harm The use of hand braces has great variation and not very well deWned beneWts
in not bracing? or risks. Therefore, it is generally best to continue with whatever seems to
provide the most beneWt to your child, and to stop doing those things that
don’t seem to work. For example, if your child refuses to wear a brace and
continually removes it, he does so because it hurts him or because it is in his
way. This should be a sign to stop using the brace, or at least to try another
one. The mainstay of treatment should be to encourage the use of the hand
for functional activity, which in this age group means during play time. It is
important not to try to force your child to do something that he physically
is not able to do or that he does only with great diYculty.
What about my In the past, it was often recommended that the normal hand be restricted to
child’s normal encourage use of the aVected hand. This philosophy was later abandoned in
hand? recognition of the stress this placed on the child. Until recently, parents were
urged never to impair the normal hand, at the risk of causing negative
consequences. Restricting the use of the normal hand has been shown
sometimes to cause signiWcant psychological distress, which can have long-
term consequences. However, recent studies have demonstrated positive
outcomes from a program of restricting normal hand use for a time. This
program, “enforced use therapy,” is not appropriate at this age level but will
be addressed later in this chapter.
We recommend encouraging use of the impaired hand at this age (one to
three) but not by restricting the normal hand.
hemiplegia ♦ 129
What about A child who has not yet attained the developmental ability to walk cannot be
walking? made to walk. Consider this: no matter how hard a parent or therapist may
try, it is impossible to make a 5-month-old normal infant walk by himself.
Many moderate to severely involved children with hemiplegia at 15 months
old are like a 5-month-old in that they do not have the developmental ability
to walk—regardless of how hard people may work to help them learn to
walk. Therefore, parents should not insist on their child walking but rather
should focus on the things that the child is doing (such as crawling), expect-
ing that in some months the child will walk.
Involvement of the leg becomes more noticeable at this age and is a sig-
niWcant factor in the delay in walking. But children with a typical hemiplegic
pattern of cerebral palsy become good walkers if there are no other under-
lying problems. The child with mild hemiplegia typically walks within the
same age range as a child without a disability. Children with moderate in-
volvement are often delayed, however, beginning to walk between 18 and 24
months. The more severely involved child may not walk until between 24
and 30 months of age. Assistance from a physical therapist can be very help-
ful, especially for a child with signiWcant developmental delay.
Each child has his individual schedule based on his development and level
of involvement. Encouraging your child to stand and to take steps is Wne, as
long as it is approached with a healthy attitude—similar to the approach you
would take with a normal child who is learning to walk. Always be sure your
coaching is in line with what your child is physically capable of doing.
Does a child have There are several therapy theories that suggest that all children have to crawl
to crawl before in a speciWc way before they go on to walk in order to develop a normal gait
walking? pattern. However, there are no empirical data to justify these theories. There
are children who never learn to crawl but who just stand up and walk, and
there is no harm in this.
There is great variation in crawling styles among children; most children
with hemiplegia learn early on to do an asymmetrical “commando crawl”
(similar to the low-to-the-ground crawl of the soldier under Wre). Some can
progress to a four-point crawl, but others cannot. The crawling pattern that
works for the child should be encouraged, and there should not be too much
emphasis placed on perfecting a particular type of crawl if the child does not
seem comfortable with change. If a therapist insists on a speciWc crawling
pattern, parents should consider switching therapists.
What problems do Foot problems in the child with hemiplegia are primarily due to a tight
the feet present? Achilles tendon (“heel cord”). The muscle that this tendon goes into, the
gastrocnemius, seems to be the slowest to grow. It is the dominant muscle be-
low the knee and the largest, and it is usually the most spastic. Problems with
this muscle and this tendon are seen in the persistent toe walker.
130 ♦ hemiplegia
Often when children begin walking they walk on tiptoe. This may in
fact be normal in a child up to the age of 2 or 2 1⁄2, but a child should be
walking Xatfooted six months after he begins walking. Children with hemi-
plegia toe walk for a prolonged period, often for several years, and they toe
walk on both feet, resulting in tightness on both the uninvolved and the in-
volved sides.
The child with hemiplegia may also have a problem with his foot turning
in, as do many normal children at this age. Although the foot may be Xat, the
whole foot appears to turn in. This pattern, which is due to a twist in
the bones of the leg, often corrects itself as the child grows and develops
better muscle control. Because the condition self-corrects, surgery, exercises,
and braces are rarely necessary. If parents are very concerned, activities
that require pointing the foot forward can be encouraged. These include
roller skating, ice skating, and ballet—activities that are often preferable to
physical therapy or home exercises because they involve the child in normal
activities.
Can stretching or The usefulness of physical stretching as therapy is an issue about which a
exercises help? great variety of opinions exist. The child with spasticity is no diVerent from
anyone else in that she will beneWt from stretching after being in one posi-
tion for a long time: it feels good to get up and stretch after lengthy sitting.
The child with spasticity needs help to stretch out the aVected muscles. But
the tightness that develops from the spasticity will not be overcome by phys-
ically stretching the child. It would actually require 8 to 12 hours of relaxed
stretch each day in order to make a muscle grow. Clearly, it is impractical to
spend 8 to 12 hours a day stretching a child!
It’s good practice to stretch for short periods of time (5 to 10 minutes),
twice a day, incorporating this into your child’s daily routine like bathing
and toothbrushing. But you must realize that your child’s spasticity will be
there forever. Although no exercise program has ever been shown to make a
long-term diVerence in a child’s disability, exercises prescribed by a therapist
or physician should be considered. However, your role is that of parent, not
therapist. It’s important to consider the rest of the family, job obligations,
and educational goals, as well as how the involved child is responding to
other demands.
Exercise for the child with hemiplegia should be approached in the same
way that physical exercise is approached for the nondisabled individual, the
purpose being to keep Wt and to feel and function better. There is room for
Xexibility, and no great harm is done by skipping a day or taking vacation
time oV. As with other exercise programs, the beneWts are ultimately lost
when the exercises are discontinued.
When are foot The AFO (ankle-foot orthosis) or MAFO (molded ankle-foot orthosis) is a com-
braces suggested? monly used brace that is worn for the purpose of stretching the Achilles ten-
hemiplegia ♦ 131
don. An AFO can be helpful to children with hemiplegic involvement who

are walking on tiptoe, usually more so on the side aVected by the spasticity.
The brace is applied if the foot can be brought to a neutral position. If the
foot cannot be brought to a neutral position, then surgery or another kind
of treatment needs to be considered (see below).
Although there is no generally accepted routine for using an AFO, it’s
generally true that children who need to use the brace should wear it during
the day in the same way that they wear shoes. There is no harm in the child’s
walking barefoot for periods of time in the evenings or after a bath. If the
muscle is very tight, there may be some beneWt to wearing the brace at night
for an additional stretch.
A child will need time to get used to a new AFO just as most of us need
time to break in a stiV new pair of shoes. The AFO must be adjusted if red
areas of skin keep developing or if the foot does not stay down in its correct
place. The AFO will feel very restrictive to the child, so even though the child
looks better walking and standing, the AFO will not feel natural or com-
fortable to her. Once the child is used to the AFO, often several months later,
it will feel very comfortable. Even then it is preferable for her to spend some
time out of the brace. If a child is kept braced continuously, the foot may be-
come hypersensitive and feel much like a limb feels after being in a cast for
several months.
If the child continues to complain about the AFO, it should be carefully
checked. To check an AFO, look for wrinkles in socks (a telltale sign that
something is wrong); determine whether the foot has been fully placed in
the correct position; and Wnd out whether the toes are curled up inside the
shoes, or whether the AFOs have been switched so that the right AFO has
been accidentally placed on the left foot, and vice versa. If the AFO is
applied by many diVerent people (parents, siblings, daycare teachers, and
so on), it is especially important to make sure that the AFOs are clearly
marked as right or left. Applying the wrong AFO to a foot is a common
error.
The type of AFO used depends on what is locally available. For the child
who is running around, the best brace is a thin, light plastic, custom-molded
brace, sometimes with a hinge at the ankle to prevent her from toe walking.
It is imperative that the brace not be too restrictive on the calf area. As the
child grows, braces are reevaluated for size, and new braces must be made.
Generally braces are replaced yearly because of the child’s growth. However,
during rapid growth spurts it may be necessary to replace the brace more
often. There are some orthotists who make AFOs that can be extended
for length, but this feature adds very little to the length of time the brace will
Wt. Adjusting only the length of the AFO might be compared to attempting
to make a pair of pants last a child for Wve years by making the legs longer
each year.
Another problem with the hemiplegic foot involves a spastic tibialis pos-
132 ♦ hemiplegia
terior muscle, which is located on the inside of the ankle and pulls the foot so
that the toes point toward each other. This can cause the child to walk on the
inside border of the foot. An AFO is a recommended treatment for this
problem in a young child.
Are there any If the child’s spasticity is the primary reason he cannot tolerate the brace and
options other than stretching has reached its limit, Botox injections may be used. Botox injec-
surgery when tions have become a very helpful treatment. Used appropriately, this med-
braces aren’t ication can delay surgery for the very young child. Botox (generic name: bot-
working out? ulinum toxin) is a chemical that signiWcantly weakens a muscle when it is
injected directly into that muscle. It is injected with a small needle, much like
an immunization. Most children tolerate the injection well in the outpatient
setting, although the injection may be administered after sedating the child,
or numbing the skin with a local anesthetic. The chemical stays in the muscle
where it is injected and its use is very safe. Unfortunately, the eVect is tem-
porary, lasting 3–6 months. Additionally, although Botox can be injected mul-
tiple times, in most children, each subsequent injection is less eVective. This
is because the body manufactures antibodies to the Botox, recognizing it as
a foreign substance. For many children, after three to four injections over a
period of 9–18 months, one sees little or no eVect. But it is useful in delaying
surgery for that amount of time.
If the child is not able to tolerate a brace because the tendon is contracted
and spasticity is not a major component, Botox is unlikely to be helpful.
Botox can also be used in the hamstrings and adductor muscles, as well as in
the spastic upper extremity muscles.
Another possible option is serial casting. Serial casting (which involves
placing the leg in casts that are changed every two weeks) is a method for
lengthening the tendon that was popular in the past but now is seldom used.
In cerebral palsy, this is almost always a temporary measure; that is, the foot
returns to its former position within several months of removing the cast.
Once in a while a child who has a very mild tightness and is not tolerating an
AFO may beneWt from serial casting for six to eight weeks. If serial casting
fails, proceeding to surgical intervention allows the family to get back to
normal functioning with fewer disruptions than repeated cast changes and
long-term cast wear would mean.
When is surgery When the foot can’t be brought to a neutral or normal position despite the
for the foot use of braces and/or Botox, then surgery to lengthen the Achilles tendon is
advisable? indicated. Surgery is usually the best lengthening method. The younger the
child is when the Achilles tendon is lengthened, however, the more likely
he will need to have the procedure repeated as he grows. Ideally, one care-
fully planned surgery for lengthening suYces. Surgical correction is also
possible for the foot that is turned in severely, but it is preferable to wait un-
hemiplegia ♦ 133
til a child is at least 6 years of age to do this procedure, to permit growth in

the tendon.
The role of formal gait analysis has become an integral part of the evalu-
ation of children who walk. It is a very involved procedure that takes the pa-
tient approximately 3 hours to complete. The child is Wrst examined by a
physical therapist, who records measurements of each of the muscles. The
therapist then places sensors on the major muscles and the child is asked to
ambulate on a speciWc walkway while computers register the changes occur-
ring at the various muscle sites. These computer data are analyzed at a later
date by a team consisting of an orthopedic surgeon and therapists. Their
analysis includes recommendations for bracing, orthotics, therapy, and/or
surgery, when any of these modalities are indicated. Typically, the gait anal-
ysis is ordered not on a routine basis, but when surgery is being considered.
It is usually covered by insurance under those conditions.
What other muscle Some moderate to severely involved children with hemiplegia may have
spasticity problems tight hamstring muscles. Usually all that’s needed at this age is exercise and
can children with stretching. Braces Wtted to above the knee aren’t helpful. The severely in-
hemiplegia have volved child may have some spasticity about the hip, although this is rare.
at this age? Should it occur, it would be handled in the same way that spastic hip disease
is treated in the child with diplegia (see Chapter 6).
Ages Four to Six

The problems of the child with hemiplegia in this age group are similar
to those of the younger child. It is uncommon for children at this age to be
self-conscious about bracing, and they seldom object to wearing a brace as
long as it is comfortable and not too restrictive.
Therapy beneWts the child most if she enjoys it. Most children resist ther-
apy that consists of long periods of passive stretching or of being urged to
pull the foot or wrist up. Again, it is not advisable to force a child to partici-
pate in an activity that she dislikes. At this age reluctance can also be due to
the child’s repeated failure or fear of failing. If a child is reluctant, parents
may help to motivate the child by focusing on the result of the activity rather
than on the activity itself—although choosing an alternate form of therapy
is often the better solution.
What forms of Therapy should now be focused on activities of daily living, such as learning
therapy are most to put on and take oV shoes, use eating utensils, and ride a bicycle. The child
helpful at this can get stimulation from playing with large balls requiring two-handed play,
age? and from reaching for and holding on to playground equipment such as
jungle gyms. Bike riding, swimming, and ballet are activities that stimulate
the development of coordination—and they’re also fun. A basketball hoop
134 ♦ hemiplegia
placed at the appropriate height allows a child to play while shooting and
dribbling the ball, both of which are beneWcial activities.
Should I be con- A severely involved child can develop signiWcant tightness at this age. It’s
cerned with hand very helpful for the child to wear a brace that lifts the wrist, extends the
function at this Wngers, pulls the thumb out of the palm, and turns the palm upward. If
age? your child is using his hand, it is crucial not to cover his palm, since this de-
creases sensation and will decrease function. Occupational therapy is usually
best aimed at this age group, since this is the age for learning skills such as
dressing, bathing, and using eating utensils. In addition, Wne motor skills
such as writing and coloring can be addressed more intensely. Hand surgery
is only recommended for a small number of children, and then not until the
age of 6.
What is enforced This is a structured program currently in use, with encouraging short-term
use therapy? results but without a great deal of long-term data. It is applicable to children
with hemiplegia who have a potentially functional aVected hand and arm
but tend to totally ignore it. They appear to not be aware that the extremity
“works.” These are the children who are ideal candidates for this therapeutic
treatment, because they actually have the ability to use the extremity.
The treatment involves a short period of casting the “normal” arm and
hand (usually 4 weeks), forcing the use of the aVected limb. A therapist is an
essential part of the treatment. The therapist works intensively with the child
during this period, guiding her to use the “ignored” limb with the restric-
tion of the more functional limb. The goal is for the child to continue using
the arm and hand after the cast is removed. In programs that have been
working with this therapy, beneWts have been reported in the months after
cast removal, involving improved motor skills and increased unprompted
use of the arm. It is, however, extremely important to only use this therapy
with children who understand the purpose and who have agreed to the ther-
apy. Restricting the “normal” extremity of a child without cooperation can
produce signiWcant distress and is not recommended.
How does spastic- Problems relating to the arm and leg often become more noticeable as the
ity aVect my child child of this age begins learning an adult pattern of running. A normal run-
now? ning gait involves high lifting of the feet and reciprocating arm movements.
As children with hemiplegia try to run, they tend to Xex the aVected elbow
and wrist and turn the palm down. The arm tends to move away from the
body. This arm patterning is typical and usually is quite noticeable. As the
child’s running gait matures this improves somewhat, but it never disap-
pears. At this age a child is not generally very concerned with appearance,
and parents should avoid focusing on appearance, as well.
As the child runs, the lower extremities also experience spasticity. The
knee tends to be held in a stiVened position, which makes the aVected leg
hemiplegia ♦ 135
swing out. The aVected foot, if it is not braced or surgically corrected, has a
tendency to trip the child. The foot may be dragging or turning in or out.
Occasionally a severe Xat foot develops.
What roles do Casting at this age has the same limited use as it does at younger ages. Cast-
casts, alcohol or ing is helpful only for spasticity that is not severe enough to need surgical
phenol blocks, treatment and yet interferes with the Wtting of an AFO.
Botox, and sur- Alcohol and phenol blocks, used extensively in the past, consist of injec-
gery play? tions of medications into the spastic muscles. These injections must be ad-
ministered under general anesthesia, since they are very painful. The de-
crease in spasticity that is achieved is temporary, lasting Wve to six months.
Botox has replaced these blocks for children where temporary relief of spas-
ticity is wanted.
Surgical lengthening of the Achilles tendon must also be done under gen-
eral anesthesia. This procedure, if it is done at an appropriate age, can beneWt
the child for as long as Wve years. In many cases surgery can even result in per-
manent correction. The major risk for surgery is anesthesia. In our view, for
the risk to be a reasonable one, the procedure must have a lasting result.
What is the role of The AFO helps keep the Achilles tendon from becoming too tight and the
the AFO at this foot from becoming Xat. It can also help to control the foot that is rolling in.
age? Heel cups and arch supports are usually less eVective for this problem. This
is an appropriate time in a child’s life to consider preparing him to enter
school with as normal a gait as possible, without the need for bracing, and
this may be the appropriate age to consider surgery on the Achilles tendon.
What kind of sur- The most common surgically correctable problem is the tight Achilles ten-
gery is usually rec- don that prevents the child from placing his foot Xat on the ground. Length-
ommended at this ening this tendon involves a relatively simple procedure with few risks.
age? Sometimes the procedure needs to be repeated as the child continues to
grow, but often one lengthening is suYcient.
A foot that has a tendency to pull in while the child walks on the outside
border can be corrected at the same time by a split transfer of the posterior tib-
ialis tendon. Severe Xat feet that roll in may need to be surgically corrected
with a fusion (in which several bones are made to grow together). This pro-
cedure can often be postponed until the child is fully grown, however, and
an AFO will usually take care of the problem in the meantime.
Tight hamstrings cause the child to walk with a crouched gait. This prob-
lem can be greatly improved by a lengthening, as well. Occasionally a child
walks with his entire leg turning in. In this case the leg can be surgically dero-
tated and realigned correctly.
Shortness of the involved leg generally becomes noticeable at this age. In-
terestingly enough, this shortness can be helpful for a time, as it prevents
the child with a tight Achilles tendon from catching his toes when walking
136 ♦ hemiplegia
or running. A shoe lift on the involved side can actually cause the child to
trip more. For some children, however—those who have a severe disparity
in leg length (more than 3⁄4 inch) just prior to or during the adolescent
growth spurt—this leg length diVerence needs to be addressed. Special x-
rays called scanograms accurately determine the diVerence in length between
the two legs, and surgical options are available to equalize the leg lengths
permanently.
The age of 5 to 6 years is an excellent time to consider surgical correction
for a number of reasons. First, the child is now old enough to understand
most of what is involved, and this lessens anxiety considerably. Second,
when procedures are done and recovered from before school entry, the
child won’t need to miss valuable time from school. Additionally, improve-
ments attained with surgery will most often be maintained for Wve or more
years as the child undergoes a slow, steady growth until the adolescent
growth spurt.
Planning for surgery ought to be coordinated to minimize disruption to
the family’s life. It is far more beneWcial to the development of a child to keep
his hospitalizations to a minimum than to have various minor surgical pro-
cedures every year or so. A team of physicians familiar with the multiple
problems of children with cerebral palsy can be very eVective in limiting the
number of surgeries and hospitalizations, because they can predict and plan
what a child might need. This approach allows for more than one corrective
procedure to be done while the child is under anesthesia. In this way the
child spends less time in the hospital and has less exposure to anesthesia
risks. We want to stress the importance of consulting a surgeon who is ex-
perienced with cerebral palsy so that a practical, coordinated plan for all sur-
gery can be formulated.
Ages Seven to Twelve

At this age children are developing a self-concept and so are becoming
more aware of how they are diVerent from their peers. To diminish those
diVerences, it helps to direct therapies toward speciWc goals. In addition, it
is preferable to use school vacation time for treatment or intensive therapy,
so that time is not taken away from academic eVorts. For example, if a child
with moderate to severe hemiplegia is experiencing diYculty in self-dressing
(handling buttons or tying shoes), the summer break can be the best time to
work on improving this skill.
Almost all children with hemiplegia function well in normal age-
appropriate classrooms. Teachers can easily be made aware of the speciWc
child’s special needs and can be called upon to help design and implement
classroom adjustments. The teacher can also play a signiWcant role in help-
ing the other children in the class understand and be supportive of the child
with the disability.
hemiplegia ♦ 137
The goal at this age should be to place the child in the best situation
for learning. A physical therapy program that detracts from this goal is not
good for the long-term well-being of the child. Enrolling the child in after-
school activities such as ballet, gymnastics, or karate provides the beneWt of
stretching along with the opportunity to function and interact with children
without disabilities. There are many teachers who love to work with chil-
dren to help them grow and enjoy sports without training them to become
world-class athletes, and this type of teacher often welcomes the opportu-
nity to work with a child with a disability. Thus, the child can concentrate
on academics in school and can work out physically during extracurricular
activities.
How are the hand This is the age at which children begin to object to using arm splints or
and arm best braces because wearing these devices makes them look diVerent. If your
treated at this child feels self-conscious and does not want to wear a brace, it is best not to
age? force the issue, especially since arm braces provide little functional beneWt
at this age.
Mild arm involvement refers to the limb that is used almost normally but
that has a tendency to Xex at the elbow when the person is excited or run-
ning. This pattern continues throughout adulthood and is primarily a cos-
metic concern. It is frequently handled by acquiring habits that control or
conceal the movement in socially acceptable ways. For example, females may
learn to carry a purse (and males a book bag), even purposely weighted, on
the aVected arm. Or they learn to place the hand in their pants pocket. When
preadolescent children Wrst become self-conscious about the arm, they often
hold the aVected hand with the nonaVected hand to cover up and control
the deformity.
The moderately involved arm is one that is always Xexed and pronated at
the wrist and elbow, to some degree. Pronation refers to the rotation of the
forearm and hand in which the palm of the hand is always turned away from
the person’s face. The hand may also have abnormal sensation, and the mod-
erately involved arm is quite noticeable cosmetically. Although the arm can
be used well as an assist, its pronated position prevents the child from being
able to fully see what he is trying to pick up because he can only see the top
of his Wngers and hand.
This kind of involvement usually responds very well to surgical correc-
tion. The amount of functional improvement achieved varies depending on
the presurgical status, but the cosmetic result is invariably excellent. If the
child has been using the arm readily in most activities of daily living and also
has fairly intact sensation, the surgery allows for easier use and the child will
naturally use the arm more. The child is often more aware of the cosmetic re-
sult, while the parents notice improved function.
The severely involved arm is one that is used only to perform an activity
that’s impossible to execute with one hand. This hand usually has poor sen-
138 ♦ hemiplegia
sation as well as poor muscle control. Surgical treatment for this type of in-
volvement is indicated purely for cosmetic improvement, because function
is rarely improved, even though the hand may be better positioned. Poor
brain control and poor sensation preclude signiWcant functional improve-
ment. Sometimes, if this is not well understood by parents prior to surgery,
conXicts arise. Because the arm looks so much more normal, parents and
teachers may inappropriately expect more function and even attempt to
force a child to use an arm that he simply is incapable of using.
Age seven to twelve is the best age to correct the arm surgically, if indi-
cated. Children are now old enough to understand a great deal in terms of
the procedure and the recovery. They are also capable of fully participating
in the rehabilitation process. Children at this age generally do not have well-
formed or unrealistic expectations, which is an added beneWt, since they are
invariably pleased with the surgical result.
Delaying surgery until after age 12 can present some problems. As chil-
dren go through the adolescent stage of development, they may become un-
realistic in their expectations and are often self-deprecating. Though many
adolescents may in fact breeze through this period as easily as they did child-
hood, those who are more upset over perceived, as well as real, deWciencies
tend to be aVected in two ways. First, they are more concerned about their
appearance and are unhappy with braces or splints. Second, they have un-
realistically high expectations about the outcome of corrective surgery and
frequently are disappointed with the results. Good timing for surgery is es-
sential. And the importance of making certain that the adolescent is fully
prepared—that he has as complete an understanding as possible of various
outcomes—cannot be overemphasized.
What are the The speciWc surgery is dependent on the level of involvement as well as on
speciWc surgical the function of the involved muscles. Surgery might be approached one
procedures? way if there is a possibility of increasing function and another way if there
is no such possibility, but in practice, function and cosmetics are generally
approached similarly. A strict rule of medical treatment, of course, is to
avoid doing harm, and in this case, surgery must be designed and carried
out in a way that doesn’t decrease function (with a few exceptions, as de-
scribed below).
Before performing surgery, the surgeon will obtain a detailed history of
the patterns of use and will give the child a careful physical examination. In
some institutions, EMGs (studies that evaluate nerve/muscle connections)
are performed before surgery in order to study muscle function in upper ex-
tremity analysis. This is not standard practice at the present time, however,
since EMGs are used more in the area of research than in therapeutics.
Most surgery involves transferring muscle tendons, in order to achieve
balance, or lengthening tendons, in order to relieve tightness. The Xexed
wrist is the most noticeable problem and is usually addressed by transferring
hemiplegia ♦ 139
to the top of the hand the tendon end of the Xexor carpi ulnaris muscle, which
then pulls the hand and wrist into the extended position. In this new posi-
tion it is attached to a wrist extensor muscle tendon or to the Wnger extensor
muscle tendons. If the Wngers do not extend, the Wnger muscle tendons need
to be lengthened. If the thumb is pulled into the palm, this is corrected by
releasing the adductor pollicis muscle tendon in the palm or by moving a
muscle tendon to help the thumb extend, or both.
The forearm is frequently in a pronated position, palm down. This can
be addressed by transferring or releasing the pronator teres muscle tendon in
the mid-forearm. Occasionally the forearm is Xexed at the elbow and con-
tracted. In this case the biceps muscle tendon is lengthened. Infrequently, a
thumb joint fusion is indicated, and rarely, a wrist fusion is performed. Wrist
fusions were popular in the past, but today they are only performed on a
child who has a severely contracted hand or whose hand is completely with-
out function. A fusion of this type should almost never be done at this young
age because, although the cosmetic result is good, the procedure almost al-
ways reduces functional ability.
One guiding principle in this type of surgery should be to attempt to ad-
dress as many problems as possible at the same time, taking advantage of one
anesthesia exposure and one hospitalization. If they have any concerns about
speciWc recommendations, parents should seek a second opinion, preferably
from an orthopedist who is experienced in treating people with cerebral
palsy. By taking these precautions a parent can hope to avoid bringing the
child to surgery again.
What is the usual If surgery involves the hand and wrist, the arm is placed in a cast extending
postoperative from the Wngers to the elbow. If the elbow has been surgically addressed dur-
course? ing the same surgery, then the cast extends to the shoulder. The arm remains
in the cast for four to six weeks. Analgesics (pain medication) may be neces-
sary in the immediate postoperative period, but patients are generally quite
comfortable in the supportive cast.
When the cast is removed, a short course (one to three times weekly for
one to three months) of intense occupational therapy is very beneWcial, and
helps the child achieve the maximum beneWt from the surgery. In addition,
resting splints are often used full time for 6 to 12 weeks and often for a longer
period at night, in order to maintain correction.
Generally, continued use of the night splint is most important for the
growing child. There is little rationale for use of a night splint for more than
12 months with a child who has Wnished growing, since by this time the sit-
uation is unlikely to change, with or without splinting.
What is the role of The issues and problems of the lower extremities in this age group are much
bracing for the like those of younger children. The use of the AFO to help control the foot
lower extremity? is often well tolerated. This is especially true if the child notices that the brace
140 ♦ hemiplegia
makes it easier to walk and run. In addition, the brace is fairly easy to hide
with clothing, and peers may not even be aware that the child is wearing a
brace. A good compromise for brace wear is to have the child wear the brace
all day during school but allow him to remove it in the evening and on week-
ends. However, when an activity involves a great deal of walking, an excep-
tion needs to be made to include the brace.
During the summer children generally go without their braces much of
the time, especially if they are doing a great deal of swimming. There is re-
ally no need for a child to wear braces in the water. One of the disadvantages
of constant brace wear during childhood is the development of very small,
thin calf muscles. A signiWcant cause of the small calf is that spastic muscles
don’t develop normally, and using braces constantly or using braces that are
too small serves to keep the muscle smaller (repeated surgical lengthenings
of the Achilles tendon also cause thin calf muscles). Allowing the child not
to wear his brace, as well as taking care to see that outgrown braces are re-
placed, can help minimize this problem.
What surgery is For most children of this age with hemiplegia, the goal should be to release
suggested for the them from the necessity of bracing. Doing so may include a weaning period
lower extremity? as well as surgery. Early adolescence, when a child has begun the adolescent
growth spurt but is not fully into puberty, is a good time for surgical cor-
rections to be made. Surgery on the lower extremities can frequently be
combined with upper extremity surgery.
The most commonly performed surgery is the lengthening of the Achilles
tendon, which is appropriate for almost any child who is walking up on her
toes. If this procedure was previously done when the child was 3 to 4 years
old, this is often the age when it needs to be redone. This also is the age to
correct a foot that turns in. If the entire foot is turning in, this is corrected
by externally rotating either the tibia, in the lower leg, or the femur, in the
upper leg. This is accomplished by an osteotomy, which involves surgically
breaking the bone and realigning it in an appropriate position. If the foot
tends to roll in as the child walks, causing her to walk on the outside border,
a split posterior tibialis muscle tendon transfer may be indicated, which in-
volves moving half of the tendon to the outside of the foot so the muscle will
provide a balanced pull to the foot.
A severe Xat-foot deformity is best treated at this age with a fusion proce-
dure called a triple arthrodesis, which involves fusing bones around the heel
bone. This procedure might also be indicated for a very stiV foot that is turn-
ing in. The advantage of the triple arthrodesis is that it lasts a lifetime, with
a very low rate of complication.
Additionally, leg length discrepancies should be closely assessed and de-
cisions concerning equalization should be made during this period. If the
length discrepancy between the two legs is 1 centimeter or less, this may ac-
tually represent an advantage, because the child will trip less often. Even if
hemiplegia ♦ 141
the discrepancy is 2 centimeters (approximately 3⁄4 inch), there may not be a

signiWcant problem. A larger diVerence is very easily surgically treated by
stopping the growth in the longer leg. This procedure, called an epiphysiode-
sis, is timed to make the most of total growth while correcting length diVer-
ences between the two legs.
What is the usual The child who has had an Achilles tendon lengthening and split tibialis
postoperative transfer procedures will go home with a leg cast, most commonly one that
course? stops under the knee. This is usually a walking cast that will be worn for four
to six weeks, followed by bracing for a short period in order to maintain cor-
rection. A child who has had an osteotomy (to correct a foot that points in)
which involves the tibia is placed in either a short or a long leg cast for four
to six weeks.
An osteotomy that involves the femur may include metal Wxation, which
means that a plate is inserted during the surgery. In this case, postoperative
casting is not necessary. If a femoral osteotomy is performed without metal
Wxation, however, casting is necessary. The cast is either a spica cast (enclos-
ing the hip as well as the leg) or a long leg cast (stopping at the hip).
A child who has a triple arthrodesis procedure will be in a cast (usually
short leg) for a long time after the surgery. The Wrst month after surgery he
or she may be placed in a nonwalking cast, and for the next two months the
foot is maintained in a walking cast.
After an epiphysiodesis procedure the knee is immobilized in a brace for
approximately three to four weeks.

This may be an extremely diYcult time for the adolescent with a disabil-
ity, or it may present few problems. The degree of involvement does not
appear to have much bearing on the child’s experience. Rather, the child’s
personality and temperament, and his family’s and peers’ acceptance of
his disability, as well as the child’s and family’s goals, seem to have the most
impact.
Children this age who have disabilities generally no longer enjoy partici-
pating in organized sports. They have usually accepted the fact that their suc-
cess in this area will be limited, and they prefer to eliminate the stress of
competing with their nondisabled peers. The adolescent who redirects his
energies to areas where he is likely to have more success, such as music or ac-
ademics, is often happier.
What is the role of Adolescence is the period in which children are actively working at separat-
physical therapy ing from parents as they move toward adulthood and independence. Chil-
and exercise at dren with a hemiplegic disability usually enter into this process just like chil-
this age? dren without disabilities. For this reason exercise programs orchestrated by
142 ♦ hemiplegia
parents tend to be met with various forms of opposition. Rather than im-
posing an exercise program on the adolescent, parents should encourage
him to exercise to maintain his Xexibility in the same manner he is encour-
aged to accept responsibility for his personal hygiene and appearance. Par-
ents may have to allow the maturing adolescent to suVer the consequences
of his not having taken responsibility, but this often proves to be the best
learning experience, a far more lasting and eVective experience than parental
harassment.
There is no reason for ongoing, or “chronic,” therapy, which only tends
to foster dependence and magnify the signiWcance of the disability. Occupa-
tional therapy and physical therapy should be limited to short-term inter-
vention either to help the child accomplish a speciWc activity or to provide
postoperative rehabilitation. Whenever possible, everyone around the child
should avoid connecting the concept of chronic illness with the disability.
What are the sur- While some surgical procedures may have been done at an earlier age, par-
gical considera- ents should not preclude the possibility of making improvements, and the
tions at this age? teenage years are certainly a time when the physical disability should be
reevaluated. One patient who was a schoolteacher with a mild right hemi-
plegia had spent her entire teaching career being limited by signiWcant walk-
ing diYculties because she could not place her foot Xat on the Xoor. When
she retired she hoped to travel, and she decided to Wnd out whether some-
thing could be done for this problem. After a simple operation, her foot was
Xat and she could walk as much as she wanted to!
The positive aspect of surgery at this age is that whatever corrections
are made are permanent—they will not be outgrown. However, this is a
somewhat tumultuous period for many teenagers, who have unreasonable
expectations. A child or a teenager who has psychological or behavioral
problems should not have surgery until he or she becomes more stable and
more mature.
The speciWc problems and possible surgical corrections for the aVected
arm are almost the same as for younger children. In some adolescents with
severe involvement, there may be a great deal of stiVness. For some of these
young people a wrist fusion is suggested, but the consensus among surgeons
who treat individuals with cerebral palsy is that wrist fusion should be
avoided unless there is no other way to deal with the problem.
Surgery on the aVected leg and foot includes all the procedures outlined
in the previous section for ages seven to twelve for all the same problems. If
there has been no prior surgical treatment of the foot, the foot may be very
stiV. In this situation, tendon transfers are not possible and a triple arthrode-
sis is indicated. An Achilles tendon lengthening procedure is often necessary
with the increased growth at this age.
The correction of leg length discrepancies should be made with careful at-
tention to keeping the aVected leg slightly shorter to prevent the individual
hemiplegia ♦ 143
from catching his toes and tripping. In adults, generally a 2-centimeter (3⁄4
inch) diVerence is well tolerated. If the problem must be addressed, the best
approach is to shorten the longer leg surgically, either by arresting its growth
or by removing a piece of bone. The Wrst procedure is simpler but somewhat
less predictable, since it involves estimating future growth. When a piece of
bone is removed, it is usually taken from the hip or from the middle of the
femur. The bone is then Wxed with a plate or rod.
Another option is wearing a shoe lift that is Wxed to every pair of shoes
worn by the individual during her entire life. In view of the simplicity and
excellent outcome of surgical correction, surgery is usually the preferred
option.
Diplegia
6 ♦ D I P L E G I A is a form of cerebral palsy primarily aVecting the legs.

Most children with CP have some problems with their upper extremities,
but for a child with diplegia, the upper extremities are clearly much less in-
volved than the lower extremities. Almost all children with diplegia have
spasticity, but they also have diYculty with balance and coordination. There
is a good deal of variation among children with respect to involvement and
severity of involvement.
If your child has as much involvement in his upper extremities as in his
lower, then the chapter dealing with quadriplegia will probably be more ap-
propriate for you to read, especially if your child has an athetoid component.
If your child has asymmetrical involvement, with one side of the body clearly
more aVected than the other, almost normal, side, then the chapter on hemi-
plegia will be more relevant. A child whose primary motor dysfunction in-
volves both legs and one arm is termed triplegic, and this child’s challenges
are addressed in this chapter.
What does diple- The child with diplegia generally has nearly symmetrical involvement of
gia look like? both legs with only mild clumsiness in the arms. Spastic muscles and delayed
growth of these muscles cause leg muscles to be short, and as a result the
joints become stiV and the range of motion decreases as the child grows. For
most children with diplegic involvement, the foot and ankle present more of
a problem than the knee, and the hips may become dislocated (for this rea-
son, the child’s hips must be closely monitored).
Many children with diplegia were born prematurely and have had respi-
ratory problems. Most of them have normal or near-normal learning ability.
Mild eye problems, such as crossing, are common. For the majority of chil-
dren with diplegia, growth and development are not a problem. Children
with diplegia are eventually able to walk, although most of them begin walk-
ing late; they generally attend regular schools and become independently
functioning adults.
Does diplegia have Diplegia is generally classiWed as mild, moderate, or severe. A child with
degrees of severity? mild diplegia is an excellent walker, walking without aids such as crutches.
146 ♦ diplegia
Such a child has a normal tolerance for walking and can keep up with non-
disabled children of similar age in activities requiring walking. With moder-
ate involvement, a child is able to walk for most daily activities but may
sometimes use an aid like crutches or a walker. A child with moderate in-
volvement needs to use a wheelchair for activities involving extended walk-
ing, such as going to a shopping mall or an amusement park.
The child with severe diplegia requires an aid, such as a walker or crutches,
for managing even small distances within a room, and walks only in level,
uncrowded areas. To get around in public the child uses a wheelchair. Usu-
ally, even the most severely involved children are ambulatory enough to lift
themselves into their wheelchairs independently and to move about their
own rooms. A child who is not able to do this minimal amount of maneu-
vering should be diagnosed as quadriplegic, even if the upper extremities are
not signiWcantly involved.
Birth to One Year

Many infants who are born prematurely spend the Wrst year trying to
catch up with their age-matched peers. This Wrst year sees the development
of many milestones, such as head control, reaching out for a toy, sitting,
starting to vocalize sounds, and Wnger feeding. Even though every infant has
her own schedule and special circumstances, parents are often concerned
about the rate at which these developments are taking place. There is a fairly
wide range of normal development, and rates of catching up for premature
infants vary; these circumstances make it very diYcult to predict whether the
infant who was born prematurely will eventually catch up completely or will
have CP or some other developmental problem.
Can diplegia be Making the diagnosis of cerebral palsy is diYcult early on, although as a par-
diagnosed this ent you may have been advised of the possibility because of your child’s
early? problems at birth. If your baby was born prematurely and has had signiWcant
medical problems, such as bleeding in the brain or breathing diYculties, he
appears to be most at risk for developing diplegia. However, in order to
know for certain whether your child has or will have cerebral palsy, you must
wait for the child to grow and develop. Once her development starts to lag
behind or is obviously abnormal, there is still very little anyone can say about
how your child will eventually function. There are no speciWc tests or scans
that can deWnitely prove that your child has or doesn’t have CP, though there
are several patterns of abnormality on CT or MRI (such as periventricular
leukomalacia [PVL]) that are often seen in children who have CP (see Chap-
ter 1). There are certainly no tests that will demonstrate how he or she will
function at maturity.
Are there some The severity of involvement, even if diplegia is suspected, is extremely diY-
warning signs? cult to predict by any examination in the Wrst year of life. The most common
diplegia ♦ 147
appearance of a child with a diplegic pattern is one of stiV lower extremities,

with comparatively less than normal movement, and relatively normal up-
per extremities. Initially the child may appear to be exceedingly strong, but
oftentimes this is a manifestation of spasticity.
Floppiness is also frequently seen at this young age. Some children are
very Xoppy from birth and may appear to have no spasticity. They may even-
tually develop the same appearance of stiVness as the child who is initially
stiV, however. There are some children with diplegia who appear completely
normal, particularly in the Wrst six months. Even examination by neurolo-
gists may not uncover an abnormality.
If your child was born prematurely, then normal development for him is
counted from the day the child would have been born had he been born “on
time” (at “term,” which is 40 weeks’ gestation). This means that if he was born
at 36 weeks gestation (4 weeks early), we expect that his social smile should
develop by 10 weeks of age, rather than the 6 weeks we usually expect. This
“correction” for prematurity continues for the Wrst 18 to 24 months of age.
By 6 months of age (corrected for prematurity if necessary) your child
should roll over, start to develop a sitting balance, and move his legs in a
fairly normal fashion. If this occurs, your child most certainly will not have
severe involvement. At this age, children who have severe involvement will
show signiWcantly decreased movement, stiVness, or severe Xoppiness in the
legs. If your child is sitting independently by 9 or 10 months and is pulling
himself to standing, he is likely ultimately to have mild, or at most moder-
ate, involvement. Even children who are not doing these things at this age
may end up having mild involvement. It is simply too soon to be able to
make an accurate prediction. Few children with even mild diplegia walk
independently by 12 months of age.
What treatments Although it is rare for a child younger than age 1 to have leg problems (and
are recommended tightness or spasticity almost never require bracing, special shoes, or surgery
at this age? at this age), exercise, especially gentle stretching, is good for the child who
is not moving his legs on his own. It is best to incorporate this stretching
into activities of daily living, such as diapering and bathing. The stretching
should never be done so vigorously that it makes the child cry.
Infants generally respond well to infant stimulation programs, and these
programs also put parents in touch with professionals who are comfortable
with their infant and can tell parents about activities that will help stimulate
the infant in a way that is appropriate for his level of development. These
programs also oVer reassurance that the parent’s eVorts are helping the child
and assure parents that their child is developing at his maximum ability.
Generally, involvement in a group program with other parents once a week
or every other week is adequate.
Is a walker recom- Many parents enjoy seeing their child move about on her own in a sling-seat
mended? walker, but parents need to supervise the child very closely to prevent acci-
148 ♦ diplegia
dents. One safety guideline is to tie the walker to a post or piece of furniture,
to limit the distance the child can travel. It is essential that a child in a walker
stay away from stairs, as this is where most accidents occur. Also, the walker
must be one that is engineered to be stable. Many physical therapists don’t
recommend walkers because they are concerned that bad movement pat-
terns will result. The use of a sling-seat walker will not teach the child to walk
sooner and can create dangerous situations. There is no evidence that the use
of walkers does any long-term harm, however.
Ages One to Three

This is the age at which the characteristics of diplegia become more
noticeable, mainly because, unlike other children at this age, the child with
diplegia is not walking. This major developmental milestone becomes the
focus for many parents. While the delay in walking is certainly important, it
is much more important, at the age of 14 months, that the child be fairly
healthy, eating well, growing normally, gaining weight, and developing hand
function and speech.
By the age of three years, it is usually helpful for the child to be involved
in a specialized school environment, such as a cerebral palsy center, which as
a site of therapy is preferred by many medical professionals over the home.
In a peer environment, focus can be placed on physical and occupational
therapies, with emphasis on the child’s disability. For children without
brothers or sisters, the group environment is also helpful in developing in-
teractive social skills.
What can I do to A child cannot be made to walk before she is developmentally able to do so,
help my child and a child does not need to crawl in order to be able to walk. As a parent,
walk? you may work at oVering the best possible environmental stimulation,
within the scope of your personal schedule and the therapist’s judgment. But
you should never force your child to walk, or make her feel inadequate for not
being able to accomplish this task. Providing a loving, supportive environ-
ment is the healthiest gift you can give her.
How can I tell if Normal children start walking sometime between the ages of 8 and 18
and when my months. Most children with diplegia are delayed in walking and do not walk
child will walk? until between 2 and 4 years of age. Children with mild involvement are usu-
ally learning to walk at age 2 to 2 1⁄2. At this age they pull up along furniture
and cruise like 10- and 11-month-old infants with normal development do.
Some children with diplegia don’t start walking until as late as age 8. There-
fore, there are a good many years when it’s possible that the child will begin
walking. Once a child starts walking, she almost always continues to make
progress in her gait. In general, by age 8 to 10 years the pattern of mobility
has developed which will be the pattern that the child will have for life.
diplegia ♦ 149
Are there special This is an area that sometimes generates conXict between therapists and
positions my child physicians. Between 1 and 3 years of age, children with diplegia have a ten-
should avoid? dency to sit in a W position with their legs bent backward at the knee. This
provides a very stable sitting posture and frees up the child’s hands for play.
It is also a very comfortable sitting position due to the rotational alignment
of their legs.
Although there is no scientiWc evidence that this position is damaging or
dangerous, there are those who think that this position causes hip and gait
problems. In fact, however, children who sit in this position walk with their
feet turned in only because the alignment of the legs, which allows them to
sit this way comfortably, also causes them to walk toeing in. Most profes-
sionals recommend that parents allow children to sit in a comfortable posi-
tion, particularly if they function well. Therapists may try to improve the
child’s sitting posture and utilize long sitting (sitting with the legs extended
in front) and tailor-style positions. Size-appropriate chairs are important as
well, as they can help the child to develop a good sitting posture.
As your child starts to move on the Xoor, she will probably use a com-
mando type of crawl, dragging herself with her arms, her legs following.
Allow your child to move and explore with whatever pattern of crawling
works for her, bearing in mind that therapists will probably work to estab-
lish a four-point crawl. Although you may certainly work on the crawl at
home, you should never restrict your child from using a crawl that works
well for her.
What walking While children without diplegia start cruising at 9 months, children with
aids should my mild involvement usually start to cruise at approximately age 2. The best
child use? walking aids are push toys such as small shopping carts and baby buggies,
which work best when weighted down with sandbags because otherwise
they tend to be very light. Children at this age seldom need walkers or
crutches and usually do not like to use them.
If your child has moderate involvement and is just starting to pull to stand
at age 2 1⁄2, he will most likely be cruising at age 3. He will probably enjoy us-
ing a walker because of the freedom of movement it oVers. Try letting your
child use the walkers that push in front as well as the rear walkers. Experi-
mentation allows the child, with the help of therapists, to determine which
kind works best for him. Even at age 3, he will often enjoy pushing toys.
If your child has severe involvement, he will most likely be standing with
support by age 3. If by age 2 1⁄2 your child is not pulling to stand, a stand-
ing program should be initiated. Therapists usually recommend the use of
ankle-foot braces (AFOs) to help with foot control, and a stander, usually
the prone type. We also recommend one or two hours a day of standing if
your child tolerates it. The use of a stander helps give children a sense of be-
ing upright, encourages head and trunk control and balance, and stimulates
the normal development of bones and joints in the legs. Remember that
150 ♦ diplegia
most children with diplegia will be pulling up and standing early enough so
that a standing program will not be necessary.
As children with diplegia start to stand, they usually go up on their toes.
If they have good balance, they may walk around like little ballet dancers,
but if balance is a problem, they frequently have diYculty walking. Ankle-
foot braces (particularly molded ones) can help stabilize the child’s feet and
ankles. At this age, the goal of using these braces is to help the child get his
feet Xat and stable, eliminating the need for concentrating on controlling
movement at the foot and ankle. Another condition that responds well to
the brace is that of the very Xat foot that tends to roll in; for this we recom-
mend the use of a rigid brace, without hinges. It should extend to the tips of
the toes to prevent the child from curling his toes over the end of the brace
in a gripping fashion. It is more diYcult to Wt shoes over these longer braces,
but generally a style of sneaker that opens far toward the front Wts very well.
In the past, orthopedic shoes with attached braces were commonly used.
While they may provide a beneWt to a small number of children who react al-
lergically to plastic, the vast majority of children are happier in plastic braces,
concealed by clothes and worn with regular shoes. The cost, when one con-
siders shoe wear, is comparable. There is almost never a need to use long leg
braces or braces above the knee for children with cerebral palsy. Although
children with disabilities such as spina biWda, polio, and spinal cord injuries
beneWt from using these braces, they tend to make walking more diYcult. At
this age, continuing to work with therapeutic exercises has the best eVect.
Surgery is seldom recommended at this age.
Is a wheelchair or Between the ages of 1 and 3, most children with diplegia have good trunk
a special stroller control and sitting balance. Regular child or infant strollers are usually ade-
needed? quate for mobility. Special adaptive strollers or wheelchairs are not needed
at this stage, unless your child doesn’t have good trunk control and needs ad-
ditional support.
What are the con- By the time a child with diplegia reaches the age of 2, there is a need to be-
cerns regarding gin close and regular examination of the hips for possible spastic hip disease.
the hips? The spasticity in the muscles around the hip joint puts the child at signiWcant
risk for hip dislocation. This dislocation occurs very slowly and is a gradual
phenomenon in which the head of the femur (which is round like a ball)
moves out of the socket of the hip joint. The most serious consequence oc-
curs when the hip becomes completely dislocated, eventually causing early
arthritis and pain as the child grows. Pain sometimes occurs as the hip is dis-
locating, too. This process of gradual dislocation is called subluxation of the
hip. Spastic hip disease can be detected by close observation and appropriate
x-rays; a hip examination is necessary every six months, and x-rays need to be
done periodically. At this young age, muscle release surgery can usually pre-
vent the hips from becoming completely dislocated.
diplegia ♦ 151
What problems do As we pointed out earlier, at this age it is very common for children to be
the feet present? walking up on their toes or, alternatively, to be noticeably rolling their feet
in. Both of these problems are best controlled with foot braces (AFOs) and
very rarely need surgical correction at this young age. These braces must be
replaced as the child grows.
Some children will have an excessive amount of turning in from the foot
or leg, causing them to trip a good deal. Heavy braces to try to correct this
should be avoided. Rather, the child should work with therapeutic exercises.
If necessary, the problem can be dealt with at an older age with surgery.
Ages Four to Six

This is the age range at which the child with diplegia makes the most signi-
Wcant physical improvement in motor function. By the time your child reaches
age 6, he or she should be ready to devote time and energy to school. Once
the child reaches kindergarten or Wrst grade, the focus should be on cogni-
tive issues. If at all possible, therapy should now be deemphasized, even dis-
continued, and children who are able to should be in regular school settings.
How much and The frequency and speciWc type of therapy is dependent on your child’s
what kind of ther- severity of involvement, the individual response to therapy, the availability
apy might my of services, and the parents’ ability to provide services. The child who is more
child need at this severely involved will probably beneWt most from therapy because he is less
age? able to stimulate himself. The child with mild involvement moves about and
plays fairly readily, thus providing a good deal of his own therapy.
There is agreement, professionally, that the period from age 4 to just en-
tering kindergarten or Wrst grade is the best time to focus on therapy. How-
ever, there is no absolute agreement on the ideal number of sessions. Most
children at this age will not tolerate more than Wve half-hour sessions a week.
Some children will tolerate considerably less. If your child is resisting, back
oV and give him time to explore on his own. If you are involved in the ther-
apy, it should be a pleasant experience for both parent and child. Your role is
not that of physical therapist but that of parent, a role that includes many
things more important than exercises. Doing some exercises at home is bet-
ter than not doing any, but you should not feel guilty if other necessary ac-
tivities at home prevent supervising your child’s exercising.
There is very little evidence that physical or occupational therapy is di-
rectly related to a child’s long-term functioning. Therapy does provide ben-
eWts to the child, and the therapist can be of signiWcant beneWt to the par-
ents with direction and suggestions. The beneWt of therapy is somewhat
similar to that of reading to a child of this age. Most children enjoy being
read to, and this does appear to stimulate a later interest in reading and, pos-
sibly, in school. It is hard to prove, however, that reading to a child two hours
a day is better than two hours a week or two hours a month.
152 ♦ diplegia
What type of There are no hard-and-fast answers to this question, as each child will choose
walking aids are the walking aid that best suits her needs and her social situation. It helps to
now appropriate? keep in mind, however, that this is the age for assessing and working out the
child’s mobility status. The goal is for the child to be as mobile as her peers
by the time she is ready to begin school. The focus should be on mobility and
not entirely on walking. A child who can walk very fast with a walker in al-
most every situation and on any terrain, but who is quite slow with crutches,
should not use crutches for school. The crutches should be used at home and
in the context of therapy, allowing her time to become more proWcient with
their use, with school use as a goal.
For the more severely involved child, there may still be the question of
whether he will ever walk. This is impossible to answer until the child is
in fact walking or has reached the age of 7 or 8. Even at that point, walking
is not an all-or-none issue. Many children are able to walk short distances
around the house but never walk independently outside for longer dis-
tances. It then becomes a question of which means of mobility works best
for the child. In home situations he may hold on to walls and furniture;
in school he may use a walker or crutches; for an all-day excursion to an
amusement park, he may choose a wheelchair. This is similar in concept to
the individual without a disability who walks at home, rides a bike to go
short distances, takes a car for longer rides, and gets on an airplane for
great distances.
Could my child Most children at this age who still need to be pushed in a stroller have out-
need a wheel- grown standard-size strollers. Families need to evaluate their need for a re-
chair? What type placement in terms of how it will be used, where it will be used, whether the
of stroller or wheel- child will be able to manipulate it, and how it will be transported in the car.
chair is best? Large strollers are generally quite light and appear less medical than wheel-
chairs, in addition to being easy to fold up and transport. Their wheels are
small, however, and this makes them diYcult to push on rough ground. The
child can’t push herself in a stroller, and she may be concerned about its ap-
pearance because it resembles a baby stroller.
The standard wheelchair is certainly more costly as well as clearly medical
in appearance. However, children often prefer it because they don’t want to
look like a baby in a stroller. They can also help choose the color. Most chil-
dren with diplegia can independently manipulate a chair (power wheelchairs
are discussed in Chapter 7 and in Part 2); clearly, the family’s environment,
as well as the individual child’s needs, must be considered when a choice of
chair is made.
My child isn’t
walking at all. Problems with balance, muscle coordination, spasticity, and leg alignment
Can I do any- are the four general causes of delayed walking. Any of these problems may
thing to encour- also prevent a child from walking. Some children may have only one factor
age her? aVecting them, while others may have several. Generally at this age it’s pos-
diplegia ♦ 153
sible to begin to identify and address the speciWc problems that are prevent-
ing the child from walking.
DiYculty with balance (ataxia) is a common problem that prevents a
child from being able to walk. Even children who walk well with a walker
may not be able to progress to crutches, because of balance problems. Typi-
cally these are children who cannot stand without holding on to furniture or
another person. The balancing mechanism, located in the brain, continues
to develop and mature until a child reaches the ages of 8 to 10.
Physical therapy can be very helpful in maximizing your child’s balance.
Therapists help children exercise and practice falling in much the same way
that gymnasts and dancers learn to perfect maneuvers with good balance.
Many children between the ages of 4 and 6 develop a protective fear of
falling. It is important during this stage not to force them to use crutches. It
is better to work in a therapeutic environment where falls will be cushioned
by mats, allowing the child to develop a sense of safety. Some therapists sug-
gest heavy shoes to help with balance. Braces are not usually helpful, and
there is no surgical treatment that will improve a child’s balance.
Lack of muscle coordination makes it diYcult for the child to place his
feet in the proper position for walking. At an early age, this phenomenon
shows up as the inability to initiate steps. The process of taking steps in-
volves the co-contraction of two muscles successfully working in harmony.
If muscles are working against each other, the child cannot take any steps.
Again, therapy can be helpful in working with the child to develop strategies
to control his muscles. Usually by ages 8 to 10 the combination of maturity
and therapy yields signiWcant improvement with respect to this problem.
Surgery can be helpful in improving the balance between diVerent
muscles. This is accomplished by transferring the overpowering muscle in a
way that increases the ability of the weaker muscle. Sometimes the knee is
prevented from bending because of muscles pulling excessively in the front;
this is improved when part of the muscle is transferred to the back of the
knee. Sometimes a child’s foot rolls in or out excessively. This imbalance can
often be corrected in a brace, but if it is severe, it can also be addressed sur-
gically with transfers or lengthenings of muscles about the ankle.
Spasticity is another problem that contributes to a child’s diYculty in
walking. Spasticity causes the stretched muscle to pull back and other
muscles to become tight as the child attempts to move. Spasticity varies with
the child’s activity, state of health, growth, and mood, as well as with the
time of day. Stretching the muscle and putting it through its range of mo-
tion helps to keep it loose but has no eVect on the underlying spasticity.
Spasticity also prevents muscles from growing normally. As children grow,
the very spastic muscle becomes shortened, resulting in a joint that cannot
move normally.
There are a number of oral medications that are helpful in reducing spas-
ticity (see table 6). However, for most children the side eVects and compli-
154 ♦ diplegia
Table 6 Medications for Spasticity

Name (Generic/Trade) How Given Possible Side EVectsa
Diazepam/Valium By mouth Sedation; fatigue; weakness;
Via G- or J-tube Rectally memory disturbance; ataxia;
depression
Dantrolene/Dantrium By mouth Weakness; drowsiness;

Via G- or J-tube lethargy; dizziness; nausea;
diarrhea; can also cause liver
damage
Baclofen/Lioresal By mouth Sedation; weakness; fatigue;

Via G- or J-tube abrupt withdrawal can cause
hallucinations
Intrathecally (injected into spinal Dizziness; light-headedness;
Xuid in back via a pump) drowsiness; nausea;
vomiting; decreased blood
pressure; respiratory
depression
Botulinum A toxin/ Injected into spastic muscle Localized pain; generalized

Botox fatigue; transient weakness
a
One or more of these side eVects may occur.
cations of these medications outweigh the beneWts. The decrease in spastic-

ity is often short-lived, and withdrawal of the medication typically leads to a
temporary increase in spasticity.
In addition to the oral medications, two surgical procedures involving
the brain or spinal cord are in use today as treatment for spasticity. The dor-
sal rhizotomy involves cutting the nerves coming from the spinal cord. The
second procedure, which is less invasive, involves placing a pump under the
skin of the abdomen which feeds an antispasticity medication, Baclofen, via
a catheter to the Xuid surrounding the spinal cord. The physician can adjust
the level of medication as needed. This procedure is reversible, and little
post-surgical rehabilitation is necessary. Neither procedure has had long-
term studies.
The best results from rhizotomies seem to be in children who have excel-
lent balance and few muscle coordination problems, and who are walking
fairly well despite severe spasticity. Children between the ages of 3 and 7 have
the best results. A child who is making good progress in walking would not
be a candidate for surgery until he has reached a point where he cannot pro-
gress because of the spasticity. Also, problems with balance can actually be
increased with a dorsal rhizotomy. The use of dorsal rhizotomy peaked in
the early and mid-1990s. Since then, many facilities have moved away from
doing rhizotomies because the outcomes are not clearly better and there is
deWnitely a higher complication rate than with standard treatment. There
is also very little long-term experience with Baclofen pumps in ambulatory
children with diplegia, although this approach may have a more deWned role
in years to come.
diplegia ♦ 155
Bone and muscle malalignment is another problem that interferes with

walking, and most frequently children have diYculty with their feet turning
too far in, causing them to trip as they walk. Feet that are rolling in or out
and mild tiptoe walking can usually be corrected with an AFO. A hinged
AFO should be worn if possible. If the turning in is coming from the hip,
thigh, or lower leg, no brace or cable can be applied that will result in bet-
ter function for the child, although the cosmetic appearance may improve.
Children without spasticity often show an improvement in malalignment as
they grow. However, children with spasticity seldom improve as they grow,
and surgical correction of the problem is necessary, usually before the child
begins Wrst grade. This timing prepares the child to enter school in the best
possible condition.
Bone malalignment is corrected by surgically cutting the bone (osteotomy)
and resetting it in a corrected position. Muscle lengthenings involve cutting
the tendon. The entire muscle system must be evaluated so that lengthening
one muscle does not create an imbalance. Typically, a child who needs his
Achilles tendon lengthened has tight hip and knee muscles as well. If only
the Achilles tendon were lengthened on a child who is toe walking and has
tight hamstrings, the child would walk Xatfooted but with a crouched gait.
Thus, the timing of muscle lengthenings is crucial, because as a child grows
the muscles retighten.
I’ve heard about Determining when to perform surgery to make a child walk better requires
surgery to help a highly individualized and often subjective evaluation. There must be care-
children walk bet- ful consideration given to not impeding a child’s progress by holding back
ter. When is the necessary corrective surgery, while also attempting to time surgeries so that
best time for this? a child has a minimum number of operations in his lifetime. The younger a
child is when muscle lengthenings are done, the more likely it is that the
child will need to undergo additional lengthenings as he or she grows. On
the other hand, delaying necessary surgery will often impede a child’s prog-
ress in walking.
Minimizing the number of surgeries a child has is essential in attempting
to prevent the child from seeing himself as “sick.” Operating on a child at an
age when he can understand some of his experience and cooperate with
postoperative therapy is also beneWcial to the child. Generally, just before a
child enters Wrst grade is an appropriate time for the Wrst surgery. Most chil-
dren with diplegia can be treated surgically at this age, with the Wnal adjust-
ment made at the end of adolescence.
With good planning, including grouping procedures, the majority of
children will undergo only two orthopedic surgeries in the pre-adult years.
This ought to be the goal, and it certainly is the ideal situation. Even if this
goal can’t be met, there is no reason for a child with diplegia to have an op-
eration every year, for four or Wve years, as was typical 15 or 20 years ago.
To avoid repeated surgeries and recoveries, it’s essential for the child to be
156 ♦ diplegia
evaluated by an orthopedist who is experienced with cerebral palsy and who

can perform several necessary procedures while the child is under one dose
of anesthesia. The orthopedist must be highly skilled and able to predict the
impact of one procedure on another.
Should I be wor- Hip subluxation and dislocation are certainly signiWcant concerns. Your
ried that my child child must be examined at least every six months and x-rayed as necessary.
might have a hip At this age children are generally x-rayed every two years, unless the ex-
dislocation at this amination demonstrates excellent hip motion with very little spasticity.
age? The risk of developing hip problems is related to the severity of involve-
ment. Children with very mild involvement are at low risk for develop-
ing hip problems, but as many as 50 to 75 percent of children with severe
diplegia develop hip abnormalities that require surgical intervention. Re-
leasing the muscles in the groin (the adductors) which are applying abnor-
mal forces to the hip is the simplest surgical procedure, and should be done
as soon as recommended because of its simplicity and generally excellent
outcome.
Should I be con- Although back problems are a concern, they do not need to be monitored as
cerned about my closely as other areas at this age. There may be the appearance of a scoliosis
child’s back? (curvature to the side) or kyphosis (round shoulders), but these are almost al-
ways Xexible deformities. X-rays and treatment are generally not considered
at this age because the deformity is not Wxed. These conditions do require
periodic evaluations by a physician, however.
Are there any The child with typical diplegia by deWnition has no signiWcant problem with
upper extremity her upper extremities. However, children with diplegia do frequently have
problems? diYculty with Wne motor coordination, like that required for coloring and
writing. Some children do have a signiWcant problem with one arm or hand,
despite the fact that they have a diplegic pattern. Refer to the discussion of
the upper extremities in Chapter 5 if your child has such a problem.

The early school years usually bring about signiWcant changes for chil-
dren, including children with a disability. By the time a child reaches this
age, the rate of physical improvement has leveled oV in areas such as balance
and coordination, and it’s a good idea to refocus the child’s attention away
from additional physical improvement and toward intellectual learning.
Children without a disability are also being encouraged to concentrate more
on academics and less on play at this age, but for the child with a disability
these years usually involve coming to terms with a decreased level of physi-
cal function.
diplegia ♦ 157
What school envi- The choice of school environment is often diYcult. In some districts parents
ronment is best for are not given reasonable options, and this of course complicates the process
my child? of placing a child with special needs. The current trend is for inclusion of
most children with diplegia, meaning that they are placed in regular classes.
This tends to work well for the mildly aVected child, as the child can be in-
tegrated into most normal activities. Children who have more signiWcant
cognitive disabilities are sometimes included only for classes such as music
and art, allowing for some interaction with peers. Children with a signiWcant
physical disability need to attend school in buildings that are accessible to
wheelchairs, walkers, or crutches. An appropriate and accessible toileting
facility must also be available.
It is important to consider many factors when choosing a learning envi-
ronment for your child. You must consider that children need to be in an en-
vironment where they can feel successful while learning, without constantly
being frustrated. Children clearly beneWt from interacting with other chil-
dren who don’t have disabilities, but they need to be placed in an appropri-
ate learning environment, as well. Make certain that properly trained staV
are available to meet the needs of your child and to manage interactions with
the other children. It is often uncomfortable for the child to be identiWed as
diVerent from the other children, so it’s important for you to strike a balance
when choosing the appropriate school environment.
What is the role of Many children with mild to moderate diplegia can enjoy normal activities
adaptive physical of physical education until they are approximately 10 or 11 years old, when
education? sports tend to become more competitive and the child cannot compete eVec-
tively. Alternative physical education (PE) activities, such as adaptive PE, are
beneWcial. Adaptive PE can be structured by a physical education teacher,
providing good physical activity while enhancing the child’s self-esteem. If
it is desirable and available, informal physical and occupational therapy may
also be provided for the child with cerebral palsy while children without dis-
abilities are engaged in routine PE.
How much ther- For the child with mild diplegia, the start of Wrst grade is a good time to dis-
apy is necessary continue formal physical and occupational therapy. These therapies should
now? be replaced by physical activities such as swimming, dance class, karate, or
horseback riding lessons. Children are often involved in these activities at an
even younger age, usually because the parent has identiWed an interest and
located a capable teacher.
Formal therapy at this age has no long-term impact and is similar to an
athlete’s daily training routine, in that when the training is discontinued, the
athlete’s ability starts to regress. Because a child cannot be expected to con-
tinue physical therapy indeWnitely, cultivating her interest and ability in an
activity that she can continue throughout her lifetime is a healthier option.
158 ♦ diplegia
Additionally, formal therapy takes time away from the child’s schooling, study
time, and possible interaction with other children. An exception should be
made for therapy that focuses on teaching speciWc activities of daily living,
such as dressing, and postoperative rehabilitation therapy. These types of
therapy are recommended as needed.
The child with severe diplegia may not be able to participate in extracur-
ricular physical activities. Again, it is extremely important to make sure that
therapy, especially for children with normal intelligence, doesn’t interfere
with academic learning. Academic subjects and knowledge are most beneW-
cial for the child in the long term. Certainly, a routine home exercise pro-
gram has many beneWts, and parents can stress the importance of such a pro-
gram just as they do the importance of daily hygiene.
Will my child’s A child reaches his maximum physical ability to walk by 8 to 10 years of age.
walking continue The child who has limitations in terms of endurance and distance when he
to improve? is 8 to 10 will almost certainly not do better when he is 16. In fact, the ado-
lescent growth spurt typically adds 12 inches and 50 to 75 pounds to the
child’s frame. Because his muscle control and coordination do not improve,
this extra height and weight make walking more diYcult. This period of ad-
justing to new body dimensions, often referred to as the clumsy period, is
experienced by normal adolescents as well.
The 8-year-old with diplegia who is using all his ability to walk at age 8
is not going to walk as well when he ages and has extra height and weight.
This does not mean that a child who walks well at age 8 will need a wheel-
chair at age 16. It is likely, however, that a child who is worn out from a
shopping trip at age 10 will need crutches for a shopping trip at age 16.
The child with severe involvement who has to struggle with a walker at age
8 will probably be a full-time wheelchair user, except possibly in his own
home. In short, parents should not expect major regression, but they can
anticipate that their child’s walking skills will plateau, with some mild de-
creases in function.
For both child and parent, frustration can easily result if these changes are
not anticipated or haven’t been planned for. Up until the age of 8, continu-
ous gains are being made and it is easy, though incorrect, to anticipate that
these gains will continue. Frequently, the parents or the child will want to
increase the amount of physical therapy, under the false assumption that
even more therapy will result in greater gains. As mentioned previously, a far
more rewarding approach is to increase the focus on academics.
At this time, both parents and child should be working to accept the re-
ality of the child’s level of function; often this is easier for the child than for
the parent. Clearly the child will be at a distinct disadvantage if her parents
have not been able to deal with their expectations, particularly as the child
enters the diYcult period of puberty.
diplegia ♦ 159
What is the best The speciWc aid will most likely vary with the walking environment. A child
type of walking may hold on to walls in his home, use crutches at school, and prefer a wheel-
aid? chair for the amusement park. What the child Wnds works best for him is
what he should be allowed to use. Generally children want to use the least
obtrusive assistive device that they are comfortable with. Therefore, a child
who wants to use crutches usually needs them; the child who does not want
to use them is probably stable without them. Parents and therapists should
help the child Wnd what works best for him and not force their preferences
on the child.
Some children need an assistive device but are not able to understand the
need because of a moderate to severe mental disability. Some children who
have not developed a healthy fear of falling don’t understand this, either, and
the child may need to wear a helmet to avoid injury.
Children with severe involvement are at risk for becoming less interested
in walking as they get bigger and walking becomes harder. A similar phe-
nomenon occurs in children without disabilities; as they gain weight they
watch more TV, eat more food, and get less exercise. Because obesity poses
a signiWcant problem for children with diplegia, parents and others need to
work with these children to help them avoid obesity. As a parent you should
establish Wrm guidelines requiring your child to get some exercise appro-
priate to her ability. Your child needs to learn that exercise and good eating
habits are the cornerstones to good health, and that it is especially important
for her to work on these areas.
What braces are The use of braces is usually limited to molded foot braces (MAFOs) or, oc-
indicated at this casionally, smaller shoe inserts for children who may need them. Usually
age? foot deformities can be corrected with surgery. However, delay of surgery
for optimum eVect may make it necessary for the child to wear a brace for
one to two years. Most children will not object to wearing braces when they
are young, but any objections can be dealt with by adjusting the brace or
clothing so that the brace is covered up. When the child’s reluctance to wear
the brace involves other children’s reactions, the teacher may Wnd that ex-
plaining the use of the brace provides both an excellent lesson for other chil-
dren and a solution for the wearer.
What shoes should Usually an athletic shoe is the best choice for the child with diplegia, with or
my child wear? without a MAFO. Today, athletic shoes are well constructed and well ac-
cepted in almost any social setting. Since the MAFO is providing almost all
of the foot support, it is certainly not necessary to purchase an expensive
shoe. There is no harm in a child wearing more formal dress shoes on special
occasions, with or without braces. Even if a child does not walk as well with-
out braces, occasionally wearing dress shoes can provide a psychological
boost without causing any long-term physical damage.
160 ♦ diplegia
Will surgery At this stage of development, improvement in walking has reached a

improve walking plateau. If a child is walking without diYculty but has some mild problems,
at this age? it is best to address these after puberty. On the other hand, if a child has sig-
niWcant problems that can be improved with surgery but were not dealt with
before the child started school, they should be addressed now. There is al-
most no doubt that existing diYculties will increase in severity with the ado-
lescent growth spurt in puberty. Not confronting signiWcant problems also
puts the child at risk for additional psychological stress.
My child walks Walking with bent knees is referred to as a crouched gait and is the most
with her knees common gait problem in children with diplegia in this age group. If the
bent. What can be crouched gait is severe it should be treated, since it can prevent a child from
done? getting around. Once a child has become wheelchair bound due to this
problem, it is extremely diYcult for her to return to her prior level of walk-
ing ability.
The crouching is caused by tight muscles, speciWcally the hamstrings and
iliopsoas muscles. It can be treated by surgical lengthenings and, occasionally,
using a MAFO to help the child to stand straighter. There are some other,
less common causes for the crouching, such as overlengthened Achilles ten-
dons or severe Xat feet, and these have their own treatments. The child who
has increased crouching will tire out earlier and want to walk shorter dis-
tances. During rapid growth spurts crouching usually gets worse, because
the muscles aren’t growing as fast as the bone.
The cause of the crouched walking pattern is often complex. The primary
problem is increased contracture of the hamstring, but there are usually sig-
niWcant secondary problems, such as feet that turn out or that are severely
Xat. A gait analysis is often required to determine all the causes of crouched
walking and to plan a correction of these various components of the prob-
lem. After surgery, intense physical therapy is recommended to improve the
gait pattern, and the child will need to wear special AFOs that help to sup-
port the knee when the child is standing. Usually some crouching persists,
but this outcome is preferable to one in which the child develops a gait pat-
tern in which the knee snaps back into hyperextension (also known as back-
kneeing). This complex problem should usually be addressed by an ortho-
pedist who has experience with children who have gait problems secondary
to cerebral palsy.
What’s the treat- Wearing an AFO is the preferred treatment for severe Xat feet at this age, if
ment for severe the position of the child’s foot can be adequately corrected this way. There
Xat feet? are surgical procedures that stabilize the foot—the deformity can be per-
manently corrected with a triple arthrodesis, for example, which involves
fusing together the bones around the heel bone (calcaneus). But it’s best to
delay this surgery until the child’s growth is almost completed, since the pro-
cedure will stop most of the growth in the foot. As always, the child should
diplegia ♦ 161
undergo the fewest possible surgical procedures, to minimize disruptions. If

the child cannot function well, of course, then surgery must be considered.
Is there any treat- Spasticity may be treated at this age with a dorsal rhizotomy, which involves
ment for spasticity? cutting nerves close to the spinal cord, although this is now done only on
rare occasions. Intrathecal Baclofen pumps are being used for some children
with this level of disability, but the long-term outcome is still largely unclear.
Muscle releases and lengthenings are well-established procedures that pre-
dictably work well, though they do not directly decrease spasticity.
Should I still have Hip subluxation does continue to be a concern, although the child with
concerns about hip diplegia who walks well and has had no hip problems by this age is unlikely
subluxation and to develop problems later. Children whose hips show mild to moderate sub-
dislocation? luxation must continue to be watched closely, with x-rays every two years
throughout the teenage years. By this age, any child with severely subluxed
or dislocated hips should have been treated. If a child with severe hip prob-
lems has not been treated, then the child should have bone surgery, usually
involving additional reconstruction of the hip socket.
Are there back As a child approaches puberty, she needs to be watched more closely for sco-
problems that I liosis, since the adolescent growth spurt can produce a larger curve and,
need to monitor? eventually, a stiVer curve. Back curvature can be monitored by physical ex-
amination, and with x-rays when necessary. The severity and pattern of in-
crease of the curve will dictate how often x-rays will be needed. The risk of
developing scoliosis caused by cerebral palsy is fairly low for children who
are walking. If scoliosis does develop and become severe, however, profes-
sionals usually recommend surgical correction.

During this period of a child’s development, a major issue is separating
from the family. Adolescents with mild to moderate diplegia and normal in-
telligence often cope with this issue similarly to the way children without
disabilities do. It’s not uncommon for young people to feel as if their parents
are trying to control their lives. It is, in fact, often diYcult for parents to al-
low a child who has a disability to be independent, and to separate from
them. This is especially true for children with more signiWcant disabilities—
children whom parents feel a need to protect.
What can I do to As they enter the adult world, a world in which they will interact mostly with
help my child individuals who don’t have disabilities, teenagers will as a matter of course
develop indepen- experience failures and disappointments. But these experiences will help
dence? them to develop a sense of self, something that all children need to do.
It is important to allow the teenager to make reasonable decisions and to
162 ♦ diplegia
give him choices in the decisions being made for him. Adolescents often re-
sist having anything to do with outward signs of disability, for example.
They may not want to see doctors or therapists, and they may be opposed to
wearing braces or exercising. As they mature, teenagers must be allowed
whenever possible to make decisions about such things for themselves, even
when the outcome of those decisions is likely not to be as good as the out-
come would be if the teenager followed parental advice (see the next ques-
tion, below).
The teen with moderate to severe involvement who is handicapped will
probably experience more diYculty separating from his parents and devel-
oping independence. A person who needs assistance in the activities of daily
living, such as dressing, will of course have a more diYcult time. Such teens
should be oVered as many choices as possible, and should be allowed the
freedom and distance from their parents that makes it possible for them to
interact with other caregivers. Children who aren’t able to get out of a wheel-
chair by themselves can develop a sense of independence by being permitted
to give instruction to the people who assist them.
Using service dogs for the handicapped is a relatively new concept, simi-
lar to the guide dogs used by people who are visually impaired. These
dogs can be very helpful in fostering independent living. They are taught
to retrieve needed items and to help with such tasks as opening doors,
and they can be trained to assist the individual who has specialized needs.
It goes almost without saying that “man’s best friend” can be a wonderful
companion.
My child refuses Although the adolescent should continue to have yearly general medical
medical care. checkups and orthopedic evaluations every six months to two years, the
What should I do? severity of the diplegia will of course dictate the frequency of medical visits.
If the teenager resists this type of routine medical care, parents should Wrst
attempt to address any objections: might the teen be more comfortable with
a diVerent doctor, for example? Clearly, if a teen who needs care is not able
to respond reasonably to a parent’s attempt to help, then parents must as-
sume more responsibility for seeing that he or she receives proper medical
attention.
Suppose that the young person recognizes that wearing a brace improves
the function of his limb but resists wearing it anyway, because the issues of
self-image and peer acceptance are more important to him than limb func-
tion. A Xexible approach by the parents would be best. In this case, they can
recognize that doing without the brace at this age will not have a long-term
negative eVect. On the other hand, a signiWcant advantage of MAFOs is that
they are easy to conceal under clothes, so a compromise with a resistant teen
may still be a possibility.
What can I do to
help my teenager Adolescents frequently have a diYcult time as they go through puberty and
deal with diplegia? attempt to develop a personal value system. The teen with diplegia is cer-
diplegia ♦ 163
tainly no exception. What’s interesting is that there does not seem to be a sig-
niWcant correlation between the severity of a teen’s involvement and her re-
sponse to the involvement. In fact, it is not uncommon to Wnd a teen with a
very mild disability having more trouble accepting the disability than an-
other child who has a severe involvement.
Much of what goes into coping style is derived from the individual’s per-
sonality. The teen with very mild involvement may have diYculty because
she is “almost normal,” as opposed to a teen who has severe limitations and
knows that she will never be in a situation that is physically similar to that of
individuals without disabilities.
Many adolescents with moderate diplegia go through puberty and de-
velop a healthy self-concept with more ease than a child who has no health
problems at all. There are other children who need extra help in accepting
their disability, and this help can be obtained from licensed, trained coun-
selors. There are psychologists, social workers, and psychiatrists who special-
ize in helping children deal with disabilities, and the child who is having sig-
niWcant behavioral diYculties should be referred for professional counseling.
My teenager used There is no further improvement in walking after a child has reached the age
to walk better a of 8, 9, or 10, unless he undergoes surgery for a correctable deformity. Ado-
few years ago. lescent growth leads to a decrease in endurance and coordination that is re-
What happened? lated to adjusting to the increase in body size. This is rarely a serious prob-
lem, unless it is not anticipated or understood. There is a tendency, at times,
for a parent to assume his or her child is getting lazy or is less motivated, and
this often fosters conXict. Instead, parents must balance the need to encour-
age a teenager to stay active with the need to allow her to accept a comfort-
able level of mobility, as determined by her disability.
There is a normal decrease in mobility as individuals mature. The 16-year-
old certainly spends less time running around than the 6-year-old. For the
individual with a disability, the frequent side eVect of less activity—weight
gain—can make walking more diYcult, which in turn can mean more weight
gain as a result of less walking. This cycle can be a lifelong concern for some
individuals.
Why is my daugh- The most common recurrent problem for the adolescent with diplegia who
ter starting to has had previous surgery is an increase in the crouched gait and Xat feet. The
walk with her crouch is most likely a result of hamstrings that have not been able to ac-
knees bent again? commodate to the increase in height. The crouched gait can be a signiWcant
problem if left untreated. If it becomes severe, it is harder to treat and puts
the teen at signiWcant risk for no longer being able to walk, so it should be
addressed immediately. A moderate degree of crouching which does not
seem to be getting worse is best dealt with when the teen stops growing.
Then there can be a Wnal surgical correction.
The fact is that, for a number of reasons, surgery to correct a crouched
gait frequently does not result in a 100 percent correction. Because teenagers
164 ♦ diplegia
often have unrealistic expectations concerning surgery—even after the sur-

geon has provided a thorough explanation of the anticipated outcome—
it’s often beneWcial to the whole family for the teen to be involved in mak-
ing decisions about surgery. The physician or surgeon should allow ample
time to explain the procedures and answer questions. Taking these steps
preoperatively often leads to better cooperation by the teen in the postop-
erative therapy program. The teen needs to understand that, while no sur-
gery can completely take care of the problem, he has some inXuence over the
outcome.
After surgery to lengthen the appropriate muscles, short-term intensive
physical therapy is usually necessary. Once the teen has good correction, it is
important for her to keep active doing things to maintain the correction. A
therapist can suggest appropriate activities.
What can be done As a child gains weight, the feet become increasingly Xat and pronate more.
to treat increasing MAFOs, which are usually eVective when a child weighs 50 pounds, gener-
Xatfoot deformity? ally can’t be used when the adolescent reaches 150 pounds. Then there is
simply too much weight, causing painful skin pressure as the MAFO holds
the foot in position. Surgical correction may involve fusions of the small
joints in the foot or diVerent kinds of osteotomies (bone cuts) to correct the
Xat foot. DiVerent degrees of severity and diVerent surgeons’ experience de-
termine the speciWc procedure that is likely to be recommended.
It is often not easy to decide when feet need to be surgically corrected,
though a general rule is that the foot that is causing problems for a person as
an adolescent will most likely cause problems for him as an adult. When foot
pain is not relieved by adjustments in shoes and inserts, there is deWnitely a
need for treatment. Problems with foot position and shoe wear provide less
clear guidelines. Keep in mind that this surgery can easily be done at any time
from age 10 to age 40 with little diVerence in outcome; of course, delaying
surgery may also mean delaying relief of symptoms.
What about toe During adolescence the toes often begin causing problems. The big toe may
problems that develop a painful bunion (a large bump on the side of the toe that rubs on
cause pain and the inside of the shoe). The toe with the bunion may begin to bend toward
calluses? the second toe and even overlap it, causing more discomfort. The easiest so-
lution is to wear soft shoes that are not tight.
If the foot with the bunion continues to be painful, experts recommend
surgical correction. There are many diVerent bunion operations that are per-
formed on individuals who don’t have cerebral palsy, but most of these ap-
proaches will not work well for individuals with CP. Again, it is important
to consult a physician who has expertise in treating cerebral palsy before hav-
ing surgery.
Other toe deformities, such as hammer or claw toes, can cause calluses
and be very uncomfortable. They often make walking more diYcult for the
diplegia ♦ 165
individual who is already stressed, and may make it diYcult to wear shoes.
These problems are easily treated with surgery, when necessary.
Are there other leg In most cases leg and foot alignment has been corrected by this age, but ado-
and foot problems lescence is certainly an excellent time to make a correction, particularly after
that can be cor- the growth spurt. Bone procedures can be combined with muscle lengthen-
rected at this age? ing, making it necessary to expose the child to anesthesia only once.
These alignment corrections range from the straightforward to the com-
plex. Most professionals recommend that a gait analysis be performed to
help make decisions about proper treatment. Such analyses are conducted
in a laboratory specializing in analyzing the gait problems of children with
cerebral palsy. This evaluation can provide excellent information prior to
surgery.
Should I be con- For some individuals, the problem of hip subluxation needs to be monitored
cerned about hip through adolescence. If the teen has a mild to moderate involvement and his
development? hips have been normal up to this age, it is very unlikely that any problems
will develop. X-rays are generally not needed in this group of teens after the
ages of 8 to 10.
Children who have had hip problems or subluxation need to be followed
closely by physical examination and x-rays through the adolescent growth
spurt and into the teen years. Any change in the hips during the adolescent
growth spurt usually needs to be treated with surgery, with both bone pro-
cedures and muscle lengthenings. At this age, too, it is often necessary to ad-
dress the hip socket surgically.
Continued monitoring and treatment as necessary will help the child
reach adolescence and adulthood with hips that are as near to normal as
possible. This is the child’s best hope of avoiding the early development of
arthritis, which can cause signiWcant walking problems and pain.
What about Scoliosis, or side-bending curvature of the spine, as a result of cerebral palsy
scoliosis? is not a common problem in children with a mild to moderate pattern, but
when it does occur it becomes severe during the adolescent growth spurt.
It must be carefully monitored with physical exams and x-rays. This type of
scoliosis should not be confused with idiopathic scoliosis (spinal curvature),
which can occur in adolescents, usually girls, who are otherwise normal.
The spinal curve in the teen with cerebral palsy is usually not helped by
brace wear, and doctors often suggest surgery if the curve progresses to 45 to
50 degrees. A spinal fusion prevents any further progression and corrects a
signiWcant portion of the curve. (Scoliosis is discussed in more detail in the
next chapter.)
Quadriplegia
7 ♦ Q U A D R I P L E G I A is a form of cerebral palsy in which both

arms and both legs are aVected. Severe diplegia is often mistaken for mild
quadriplegia, primarily because almost everyone who has diplegia has some
involvement of their arms as well as their legs. For people with diplegia and
for those with mild quadriplegia, there is mild dysfunction of the arms, but
it is not a signiWcant disability. The terminology used to describe the degree
of involvement can vary greatly, even among specialists, because it is so diY-
cult to Wt a great number of individuals with diVering functional factors into
any speciWc category. There are always overlaps, and there are diVerences of
opinion about what the proper diagnosis is.
There are many people whose degree of cerebral palsy is not properly de-
scribed by a broad term like quadriplegia. For this reason, several diVerent
kinds of quadriplegia have been identiWed and named.
What do the The child with moderate spastic quadriplegia sits quite well, can lift himself
diVerent kinds of into a wheelchair independently or with assistance, may be able to do very
quadriplegia look limited walking with a walker, and has enough hand function to feed him-
like? self. (Someone who primarily has spasticity and can walk well has diplegia.
The needs of such a person are addressed in Chapter 6.) A child with severe
spastic quadriplegia can’t walk, even with assistive devices, is not able to move
to and from a wheelchair independently, usually isn’t able to feed herself, and
has diYculty sitting.
Athetosis (making large, uncontrollable movements) usually aVects the
upper extremities more than the lower. Most individuals with athetosis have
a quadriplegic pattern, although the degree of involvement varies widely.
Children with moderate athetosis are able to walk and can use their extremi-
ties well enough to take care of most activities of daily living on their own.
Children with severe athetosis are not able to walk independently and often
are not able to transfer (move into and out of a wheelchair) by themselves.
Some children with severe athetosis are unable to feed themselves and have
speech problems, as well. Many children with severe athetosis have diYculty
sitting and need special seating support.
168 ♦ quadriplegia
Other terms that are often confused with the terms described above are
pentaplegia, tetraplegia, and triplegia. Pentaplegia describes a child with poor
head control and four-limb involvement. Tetraplegia is essentially another
term for quadriplegia. Triplegia refers to involvement of three limbs: both
legs and one arm. Children with poor head control and quadriplegia are dis-
cussed in this chapter, in the context of severe spastic quadriplegia or severe
athetoid quadriplegia. Parents whose children have triplegia, are mildly
aVected, and can walk will Wnd the most relevant information in Chapter 5,
on hemiplegia. Parents whose children have moderate leg involvement but
walk with assistive devices will Wnd the most relevant information in Chap-
ter 6, on diplegia. The child with triplegia who can’t walk is considered in
this chapter, in the context of moderate spastic quadriplegia.
Birth to One Year

The Wrst year of life is one of rapid changes. The infant learns to con-
trol the movement of her head, reach for a toy, roll over, and sit by herself
without support. A delay in the development of these abilities is often the
Wrst sign of a problem in children who have quadriplegic pattern involve-
ment. An experienced mother or grandmother often will notice that the
infant does not “feel normal” when she holds him in her arms. She may
say that the infant doesn’t move normally, or is either stiVer or more Xoppy
than expected. But such signs of problems may be subtle and hard to put a
Wnger on.
Can quadriplegia The early diagnosis of quadriplegia is diYcult, as is the early diagnosis of
be diagnosed at diplegia and hemiplegia. However, children who had certain kinds of med-
this age? ical problems at an early age are at higher risk of later being diagnosed with
spastic quadriplegia. Certain complications in the early development of the
infant are associated with quadriplegia. These complications include ex-
treme prematurity (less than 28 weeks gestation), very low birth weight (less
than 1,500 grams), bleeding in the brain, severe asphyxia (lack of oxygen),
bacterial meningitis, and shaken baby syndrome (see Chapter 1). Children
who survive these complications may have mild, moderate, or severe in-
volvement, or they may be normal. As mentioned in Chapter 1, other disor-
ders can look like CP, especially quadriplegia. Particular suspicion should be
raised in the infant without any risk factors for CP. These infants should have
appropriate testing done for other neurological diagnoses.
Although many children with traumatic beginnings grow and develop
normally, parents’ and physicians’ suspicion and concern is raised when chil-
dren have a history of early signiWcant problems. A deWnitive diagnosis is
rare during infancy, but parents are often given an idea of what might be
ahead for them and their child. However, it is important to remember how
tentative these predictions are.
quadriplegia ♦ 169
What can be done For the infant who is considered high risk because of medical problems in
for the high-risk infancy or because of early signs of developmental delay, an infant stimula-
infant during the tion program is often recommended (this is addressed further on the next
Wrst year of life? page). In addition, any ongoing medical issues need to be addressed, and the
infant’s growth and development should be optimized.
Nutrition is one of the most important issues. A child who is not grow-
ing either is not getting adequate nourishment or is having severe medical
problems that are inhibiting growth. The brain needs energy to grow and
develop, and it uses the same energy as the muscles and bones. Therefore, if
the muscles and bones are not growing, it’s likely that the brain is not grow-
ing, either. Medical problems can drain a lot of energy from a child or can be
part of the reason a child does not want to eat.
Children with quadriplegia may have hydrocephalus, a condition that
makes it necessary to place a shunt, a surgically implanted device that pre-
vents Xuid from building up in the brain. Shunts must be checked periodi-
cally, and a child who has frequent infections should be checked carefully and
often. Infection around a shunt—or any other infection—must be treated
aggressively, and attempts must be made to prevent such infections by treat-
ing their cause.
Do children with Seizures are frequently associated with cerebral palsy. Because seizures can
quadriplegia often have a signiWcant eVect on the growing child, careful attention to seizures,
have seizures? and treatment to achieve maximum control of them, is strongly advised.
(Seizures are discussed in Chapter 3.)
What kind of Feeding problems caused by oral motor dysfunction are commonly associated
feeding problems with quadriplegia. This dysfunction of the muscles of the tongue and mouth
might a child with can make chewing and swallowing diYcult. Feeding problems can aVect the
quadriplegia child’s nutrition and can also lead to chronic aspiration and pneumonia.
have? Gastric reXux, in which food comes back up the esophagus, can cause
spitting up or vomiting. Sometimes the child coughs when this happens,
and then food particles are introduced into the lungs, causing bronchitis and
pneumonia. Some children have a poor gag reXex, and they, too, are sus-
ceptible to respiratory infections. It is often helpful to sit the child up after
feeding him or her. Several medications may be used to help control these
problems. In the most severe situations surgical options may be recom-
mended, ranging from placement of a gastrostomy tube to a fundoplication.
(See Chapter 3 for a full discussion of feeding problems and their treatment.)
What causes Some babies are irritable for no apparent reason, and this includes some
irritability? babies with cerebral palsy. But children with spastic quadriplegia may be
irritable for reasons associated with their condition. These babies may be
experiencing gastric reXux, not necessarily vomiting; they may be having
seizures, but not necessarily seizures that parents easily recognize. It is un-
likely at this age that their irritability is due to pain, although reXux can cer-
tainly be accompanied by discomfort.
Should I start my Although no absolute proof exists that early therapy changes the functional
child in therapy at outcome of the child, most children beneWt from early developmental stim-
such a young age? ulation therapy that is provided by physical and occupational therapists.
Early exposure to a therapist is also often an invaluable resource and support
for parents. Therapy should be delayed until the baby is medically stable,
however, and until it can be handled without putting too much stress on
the heart and lungs. Premature babies usually need to gain at least enough
weight to be at approximately normal newborn weight. After a severe brain
trauma, such as a near-drowning, therapy should not be started until the
blood pressure and heart rate are stabilized and do not change when the
child is handled. The therapy, when initiated, must be administered gently
so that the child isn’t agitated. Agitation can cause blood pressure to rise, and
if severe this may cause further brain damage.
Ages One to Three

Abnormal development in a child becomes more clearly recognized and
deWned as the child approaches his Wrst birthday. Most children at this age
are rolling over, sitting, pulling to stand, starting to say words, and even
walking independently. Of all these developmental milestones, walking is
usually of greatest concern to parents of a child with a developmental delay.
Parents naturally become concerned about the long-term prognosis if their
child has not achieved head control when other children his age are walking.
It is at this time that a diagnosis of quadriplegia is often made.
Some parents adopt the mistaken notion that more therapy or use of a
special brace or a walker will make it possible for their child to walk. This no-
tion is often fostered by a combination of factors, most importantly, by a
lack of understanding of the child’s problem or diYculty in accepting how
severe the problems are. Anxiety also plays a role. Physicians need to spend
time with parents, to help them gain some perspective and understanding of
the complex problems facing them and their child. Parents should be en-
couraged to focus on the developmental skills that can be addressed now,
and to set aside, for the time being, their concern about developments that
will only become clear with the passage of time.
What are the most The most important issue at this age is whether the child is thriving, gaining
important health weight, and growing in height and head circumference. The long-term best
issues at this age? outcome for any child requires that he get adequate nourishment in order to
grow and develop. The child’s actual weight is less important than whether
the child is gaining, staying the same, or losing weight over time. The child
who is not getting enough nourishment and not growing is also not going
to develop optimally. The child’s overall nutrition and health are much more
important than any therapy, brace, or other device. Good nutrition is essen-
tial to normal growth and maximum development.
Another health issue at this age is constipation. The child who cannot get
around on her own may become constipated and uncomfortable, and may
express this discomfort by becoming irritable. An appropriately designed
bowel program can be a great help in this area (see Part 2, on caregiving tech-
niques, for a description of such a program).
Are physical and Physical and occupational therapy are important for the child’s stimulation
occupational ther- and to help the family develop realistic expectations. The therapist is a great
apy beneWcial? resource for the parent in gaining information about future equipment
needs and can assist in being a “doorway” to the medical community. Ther-
apists can also teach parents how to touch and hold their child. However, it
is important to understand the limitations of what the therapist can do. A
physical therapist, no matter how experienced and knowledgeable, can’t
make a child walk. He or she can work to keep the child’s joint range of mo-
tion at its maximum and can provide valuable strategies for helping with bal-
ance, so that the child has the best possible chance of walking if she is capable
of doing so. The actual ability to walk and to balance are functions of the
brain. At present, no one knows how to overcome the damage the brain has
suVered and get it to function normally.
In the same way, occupational therapists can help enormously with activ-
ities of daily living such as self-feeding. But they can’t make a child who has
quadriplegia have normally functioning hands and Wngers. The goal of any
of the therapies should be to help the child. Therapy itself should not be the
goal. Therefore, therapy should not consume the child’s life; nor should any-
one suggest or believe that therapy will satisfy unrealistic expectations. The
child can receive therapy in various ways, some of them of beneWt to both
the child and the parent; for example, there are infant stimulation day care
centers where the child can be placed for both day care and therapy.
Parents need to maintain contact with the therapist. In this way, the ther-
apist can answer many of the parents’ questions as well as provide sugges-
tions for home activities that would help the child and family. Many of these
suggestions will be practical, while others will be fun and stimulating.
In terms of when therapy ought to begin, the situation is somewhat
diVerent for the child who sustains a brain injury at age 2 up to age 5. After
an injury, a child may very quickly develop severe muscle tightness and con-
tractures. Parents may believe that this possibility should have been ad-
dressed earlier by therapy, but the safe time for starting therapy varies with
each child. Just after an injury the brain swells, and everything possible must
be done to reduce this swelling and prevent additional swelling, including
avoiding agitating the child and raising his or her blood pressure. At some
point, from several days to a month after the injury, the swelling diminishes
and the brain begins to heal. This is the time to start therapy.
How many doctors Generally, by age 1 or a year after brain injury, a child can be followed by
does my child a family pediatrician. Specialists can then be consulted as the need arises,
need? thereby limiting the time spent by child and parent in doctors’ oYces. Not
only is this helpful in a practical sense, but it is also psychologically beneW-
cial. Most children with cerebral palsy need to be seen by specialists at
times—a pediatrician can’t provide for all the child’s needs. What the pedia-
trician can do is refer the child for dental, orthopedic, neurological, and
other consultations when necessary. Chapter 9 deWnes various medical
specialties and suggests guidelines for obtaining proper medical care for
your child.
Are children with Children with quadriplegia may have mental retardation, but many children
quadriplegia are thought to have mental retardation when in fact they are only very lim-
often mentally ited in their ability to communicate. Having a child tested by appropriately
retarded? trained individuals is essential in order to evaluate his or her potential.
(Mental retardation is further discussed in Chapter 3.)
What about self- Self-injurious behavior, or SIB, often begins at this time and is usually seen
injurious in children with spastic or hypotonic quadriplegia with some degree of men-
behavior? tal retardation. It is very rarely seen in children with athetosis. (During the
adolescent period, athetoid movements can become strong enough to cause
injury accidentally. The treatment of this problem is diVerent from the treat-
ment for voluntary self-abuse.)
The most common self-abusive behaviors are hand biting, hand hitting,
head banging, and eye scratching. The behavior generally is worse when the
child is left alone or is not involved in some activity. Treatment should focus
on Wnding ways to keep the child occupied and distracted. Other methods,
such as rewarding desired behaviors, may be tried but may not be successful
because of the child’s cognitive limitations.
Restraints, such as elbow extension splints, helmets, and face guards are
occasionally used, but they may only frustrate the child and make matters
worse when the restraints are not in place. Clearly, if the self-abusive behav-
ior is causing signiWcant bodily harm, such as risking blindness or the loss of
Wngers, the child must be protected from himself. (See Chapter 3 for a more
complete discussion of self-injurious behavior.)
What type of seat- Most children with quadriplegia are not sitting well by age 1, although many
ing is best? of them eventually develop the ability to sit. At this age parents should con-
centrate on supporting the child’s upper body, encouraging head control
and providing head control as needed. This is especially important to im-
prove the child’s feeding, communication, and interaction with the envi-
ronment. Between the ages of 1 and 2, the child should be fed while seated
in a seat facing the person feeding him. The seat may be a chair with special
trunk (upper torso) supports or with a special contour (plastic contoured
seats, such as the tumble form, are one alternative). For best results, the
child’s needs should be assessed frequently by an occupational therapist,
who can recommend the best seat for the individual child.
In choosing a seat, it’s important to consider whether only a feeding chair
is desired or if a combined stroller and feeding seat would be more useful.
These combination devices are popular, and there are a number of them on
the market. Generally, they have a nice appearance and resemble a standard
baby stroller rather than a medical wheelchair. Some seats can be used as car
seats, although these tend to be a bit heavy and bulky. Most parents do not
Wnd them convenient for routine use, though they may come in handy as a
car seat when traveling extensively. The chair should be ordered with a lap
tray. Toys can be placed on the tray in front of the child, and the chair can be
used as a desk, as well.
There are also a large variety of positioning and play chairs available,
which the child may use in school or therapy. If one of these seems especially
well suited to the individual child, the parents may want to order one or
make one for use at home. These chairs include corner chairs, saddle chairs,
benches, cylinders, and swing chairs.
Is a walker recom- The use of a child walker is controversial. Some therapists believe that walk-
mended? ers are detrimental to development, and others see them as useful. Many
parents prefer to use them because children seem to enjoy the increased free-
dom of movement, though sometimes the movements consist of stiVening
or Xailing rather than being purposeful. The walker will not prevent a child
from walking independently if he is capable of doing so. Nor will the walker
make a child who cannot walk do so.
There is no scientiWc evidence that a short period of time spent in a walker
is either harmful or beneWcial, but the walker may represent an emotional is-
sue for parents. Children without disabilities use this type of seated walker,
and when a child with cerebral palsy uses a walker he may appear more like
a normal child. This is in contrast to the child’s use of a stander, which a child
without disabilities would not use. Our position, simply stated, is that using
a walker is not going to harm the child as long as safety precautions are taken
with regard to staircases and objects that can tip the device over. This is cru-
cially important, because many children have been seriously injured when
left unattended in a walker.
Is standing We believe that there are many beneWts to standing, although most of these
important? have not yet been documented scientiWcally. One beneWt is the strengthen-
ing of bone; standing improves both the quality and the size of bones. This
has been proven in studies of children with spina biWda who stand and walk
with braces. They have fewer fractures, even as adults, than children who
constantly sit in wheelchairs. This has been shown as well for adults with
cerebral palsy who no longer walk but continue to have better bone mass,
apparently from having been standers as children. Cerebral palsy and spina
biWda are diVerent conditions, but it is reasonable to assume that the beneWts
of weight bearing should be at least similar, if not the same for children with
either condition.
Another beneWt of standing is in the area of development. Many thera-
pists and doctors believe that standing helps the development of balance,
head control, and spatial conceptualization. Thus the child who may later be
able to use a power chair gains a better sense of the three-dimensional space
that he will eventually move around in. These beliefs of doctors are diYcult
to prove, but we do know that nondisabled children develop these concepts
in just this way. It seems logical that children with cerebral palsy need the
same stimulation to develop their abilities to the greatest extent possible.
How can I tell Between 18 and 24 months of age is usually a practical time to start consid-
whether a stander ering a stander, because by then the child’s acute medical issues are mostly
would be helpful resolved and parents and doctors have a good sense of the rate of gain in de-
for my child? velopment. By this time, many children with quadriplegia are able to move
by crawling or rolling on the Xoor. Some are able to scoot in the sitting po-
sition, and some are able to pull to a standing position. If a child is able to
pull to stand by 24 months, she can bear her weight and most likely will pro-
gress with time to a walker. If a child has not reached this milestone at 24
months, she should be started in a standing program with a stander.
There are three types of standers: prone, supine, and freedom, or para-
podium, standers. The freedom or parapodium stander is most useful for
children with spina biWda who have normal upper bodies. It has almost no
usefulness for children with cerebral palsy, because most children with CP
have poor upper body control, and will end up falling forward in this type of
stander. Those children with CP who have very little upper body involve-
ment usually are able to pull to stand or are able to use a walker.
Children with poor or no head control should be started in a supine
stander. The disadvantage of this type of stander is that the child leans back-
ward, and therefore his Weld of vision is limited to the ceiling. A good
thing to do is to hang interesting objects above the child’s head to provide
stimulation, or to position a mirror to reXect the activity that’s going on in
the room.
For children with some head control, the prone stander is better because
it stimulates them to hold up their heads. In addition, a lap tray placed in
front of them can allow them to play while they are standing. The tilt of both
the supine and the prone stander can be adjusted so that the child is as up-
right as possible and yet comfortable (see Part 2 for more complete discus-
sion of standers).
How much time It is usually best to start with a short period of time, say 10 to 15 minutes.
should my child As the child becomes accustomed to the stander, a parent should try to
spend in the work the child up to a one-hour stretch twice a day, if the child tolerates
stander? it. Standing should not be a period of great diYculty for the child, how-
ever. By working with diVerent positions and involving the child in activi-
ties, the parent can make time spent in the stander more enjoyable for the
child. Physical therapists can help parents design a successful program for
their child.
If the child develops a severe aversion to the stander, it may be better to
stop working with it for several months and come back to it with a new ap-
proach. For the child who is not walking, the goal should be to stay with a
standing program into and through adolescence. There are many adults who
still Wnd it useful.
Are motorized No, they are not. Motorized wheelchairs are often very appealing because
wheelchairs appro- they are “state of the art” and for many parents may represent the best that
priate at this age? they can provide for their child with a disability. However, a motorized chair
for a child with cerebral palsy should not be considered until the child is ap-
proximately 6 years old.
A child with cerebral palsy who would be able to drive a motorized chair
at age 3 would most likely be capable of cruising (walking around by hold-
ing on to furniture), and that child will be a very functional walker within a
year or two. An expensive motorized wheelchair will provide little beneWt to
such a child. On the other hand, the child who will eventually need a chair is
not likely to be able to drive a motorized chair at age 2 or 3, because of other
impairments (such as visual diYculties, attention deWcits, Wne motor dys-
function, or cognitive impairments). There are a few exceptions, mainly
children with various conditions that have no intellectual impairment asso-
ciated with them. These children might appropriately and eVectively use a
motorized chair at this age.
Are there other For the child who is not able to sit independently, a bathing chair can be very
pieces of equip- helpful. There are several diVerent types available commercially, or they can
ment that might be constructed using PVC pipes and cloth or netting. Purchasing these
be helpful? devices puts a Wnancial strain on some parents. It’s usually easier to obtain
funding for seats and wheelchairs than for standers and bathing chairs.
Sending letters of medical necessity (provided by the physician’s oYce; see
Part 2) and being persistent are often the best ways for parents to approach
insurance carriers. Community service organizations may also provide Wnan-
cial assistance for such purchases.
What are the pre- Up until a child reaches the age of 1, there are almost never any cerebral
dominant bone palsy–related problems with the bones and joints which need to be ad-
and joint problems dressed by anything other than evaluation and observation. Starting at 1 year
at this age? of age, however, close follow-up is important. The most severe problems,
which often start to become evident at this age, are hip subluxation and hip
dislocation.
The hip is a ball-and-socket joint. Subluxation refers to the condition in
which the ball slowly pulls partially out of its appropriate position in the
socket; dislocation is the condition in which the ball has come completely out
of the socket. Both conditions are called spastic hip disease and are caused by
tight or spastic muscles about the hip. Spastic hip disease is a common prob-
lem for children with quadriplegia; as many as 80 percent of children with
severe involvement are aVected. Pain is sometimes associated with spastic
hip disease and can cause a child to be irritable.
With proper monitoring, follow-up, and treatment by an orthopedist fa-
miliar with spastic hip disease, hip dislocation can be avoided. Monitoring
begins with a physical examination. If the examination reveals a limitation
of motion in the hip so the legs cannot be spread apart to a total of 90 de-
grees, an x-ray needs to be taken and repeated every six months. The x-ray in-
dicates whether the hip is properly located within the socket. If the hip starts
to move out of the joint, the tight muscles need to be treated. Nonsurgical
treatment has proven unsuccessful in preventing hip subluxation. Braces,
casts, and exercises have been extensively used without much success, and so
these approaches have been almost completely abandoned by most ortho-
pedists treating children with cerebral palsy. To date, there is no proof that
botulinum toxin prevents hip subluxation.
The medical community agrees that spastic hip muscles need to be
treated, although there’s a good deal of diVerence concerning exactly which
muscles should be released and how the child should be treated after surgery.
Some surgeons prefer the use of casts or braces postoperatively to maintain
correction, while others prefer to use only therapy or exercises. Finding a
surgeon who is thoroughly familiar with spastic hip disease becomes crucial,
because of the variety of treatment possibilities.
If muscle-release surgery is not successful, varus osteotomy of the femur
bone may need to be done at an older age. In addition, an acetabular os-
teotomy (reshaping the socket) is sometimes also necessary. Both surgeries
are very successful if done at a young age. Occasionally with severe spastic
hip disease, a muscle release that initially was successful ends up needing to
be followed by the varus osteotomy. The key to the successful treatment of
spastic hip disease is close observation and early treatment. The greatest
problems arise from late recognition of the problem. Bones in a hip that has
been out of place for a period of time undergo changes in shape, making the
best treatment outcome far more diYcult for even the most highly skilled
surgeon. All children with quadriplegia should be evaluated every six months
by a physician who understands these issues.
Scoliosis, which is side bending of the spine, and kyphosis, which is bending
forward, are also common problems. At this age, these are only symptoms
of the child’s poor upper body control, and they should be observed over
time by the physician. The child must be provided with adequate support in
seats and standers. This curvature is not related to the structural spinal curves
that develop later, frequently at adolescence.
Feet can also present problems. Because of poor muscle control, they are
often very Xat, or if there is spasticity, they may point down so that the child
only bears weight on her toes. As the child is started in the stander, small
braces on the feet are often needed either for support or for position. These
AFOs (ankle-foot orthoses) may be made by a therapist or an orthotist, and
at this age are used mostly when standing. Some children will have less spas-
ticity or will be able to move more easily when sitting in the chair with their
braces on. The braces inhibit spasticity and may be worn most of the day for
comfort. If the child has severe spasticity and the foot cannot be positioned
properly in a brace, botulinum toxin injection of the gastrocnemius muscle
(calf muscle) may be helpful in controlling foot placement within the brace.
Surgery for foot problems is rarely recommended at this age.
The use of hand and upper extremity bracing at this age may or may not
be recommended. It is most useful for the child who is developing severe
contractures, in which the Wngers or limbs assume a Wxed position. Braces are
usually made by an occupational therapist and are worn by the child for
anywhere from one to six hours a day, in an attempt to keep the muscle
stretched. If a child tolerates the braces well, they may be left on during the
night. Splints made from a neoprene material allow for more functional
hand mobility during daytime use. Rigid braces are less functional but have
the advantage of controlling more severe contractures. Children who are us-
ing their hands for reaching or manipulating objects should not have the
hand covered for prolonged periods of time. This is extremely important,
because the brace will decrease sensation in the hand and may discourage
children from exploring with and using their hands.
Ages Four to Six

Children in this age group continue to develop rapidly, both mentally
and physically, and patterns and potential abilities become much more
clearly deWned. By the time the child reaches the age of 6, his or her basic pat-
tern of involvement and abilities can be determined, although neurological
development will continue at a signiWcant rate for at least several more years.
The child who is not able to sit independently by age 5 will almost certainly
never walk independently, but will continue to improve in head and upper
body control. The cognitive abilities of the child can also be much better
deWned as he or she gets older.
The primary goal for children in this age group is preparation for school,
although by this age children with disabilities should already be in a pro-
gram with other children and therefore should be somewhat accustomed to
separating from their parents and interacting with peers in a structured set-
ting. A major concern should be that the child continue to grow physically,
because the brain can only develop if it has enough nourishment. The best
indication of adequate nutrition is good overall growth in the child.
What role does As the child approaches school age, education should be the predominant
physical and occu- concern, and therapy that contributes to this goal should be stressed. Occu-
pational therapy pational and speech therapy, as well as communication eVorts that make the
play at this age? most of the child’s learning potential, are most important. Therapy that is fo-
cused on physical gains can be incorporated into the school program or even
accomplished through play. An appropriate balance prevents the child from
regressing physically while making it possible for him to grow intellectually.
Can drooling be Drooling is a symptom of oral motor dysfunction involving the muscles of
controlled? the mouth and throat, similar to the problems the child may be having in
controlling the muscles in her legs and arms. Various medical and social con-
sequences are associated with drooling. Mild drooling can usually be man-
aged with small bibs or bandanas. At this age, it is possible to teach the mild
or moderately involved child to try to keep his mouth closed and to swallow.
As children get older, drooling often signiWcantly improves. However, drool-
ing can become a problem when the child gets into a school environment,
where it may damage books or computer keyboards as well as interfere with
the child’s social life. Severe drooling may cause skin irritation around the
mouth and face. Medications or surgical procedures can be used if necessary
(see Chapter 3).
What about Seizures continue to be a problem for the child with quadriplegia. When
seizures? there are changes in the child’s behavior, or when a new, diVerent movement
pattern develops and the child is not able to control it, seizures should be
suspected. As the child grows, seizure patterns may change. It should not be
assumed that the child is not having any seizure activity just because the
usual seizure pattern is absent. Also as the child grows, the dosage of med-
ication often needs to be adjusted, and it’s important to monitor drug levels.
The side eVects of medications also need to be monitored. (For a fuller dis-
cussion of seizures, see Chapter 3.)
What is necessary It is vitally important to evaluate vision and hearing as part of preparing your
in terms of vision child for school. If your child was tested at an earlier age, then a simple
and hearing checkup is appropriate. A child who has never been fully evaluated, however,
screening? should be examined within the limits of her functioning level. That is, the
examining physician, audiologist, or optometrist must know whether the
child is unable to respond to questions because of deWcits in her sight or
hearing, or whether the problem is due to mental retardation; in the latter
case, the child may see and hear perfectly but may not perform well on a vi-
sion or hearing test because of cognitive limitations.
An accurate assessment of the child’s visual and auditory capacity will help
to place her in the appropriate school or classroom and to develop a com-
munication system for her to use. Eyeglasses and hearing aids, if indicated,
may make a signiWcant diVerence in the child’s interest in her environment,
as well as in her ability to learn.
My child has com- This is a good age to begin teaching simple nonverbal communication skills
munication prob- to children who aren’t able to talk. If your child can use his hands, he may
lems. What can be begin on his own to develop a sign language that works for him and his care-
done for him? givers. Around age 3, many children can begin to learn formal sign language,
although the ability to learn formal sign language, like the ability to learn any
language, depends on the child’s cognitive level. For children who have lim-
ited hand function, eye signing and facial expressions make communication
possible.
At this age, communication allows the child to understand that she can
inXuence and, to some extent, control her environment. Another way for
the child to learn this is for her to play with toys, record players, and TVs that
she can control by using electrical switches or joysticks. Becoming proWcient
at manipulating these devices is a skill that will be valuable later, when the
child uses computers, communication systems, and motorized mobility de-
vices. Many electric toys can be very easily adapted for the child with a dis-
ability; sometimes all that’s needed is an on-oV switch that the child can con-
trol by touching it. (Communication systems are discussed more fully later
in this chapter.)
What concerns Spasticity in the mouth muscles prevents the parent from being able to prop-
should I have erly clean the teeth, and because the teeth are constantly bathed in food par-
about my child’s ticles, the child has a much higher risk of developing tooth decay. The lack
teeth? of proper brushing also causes gum hypertrophy, a condition in which the
gums overgrow and may almost cover the teeth. Some medications used to
control seizures, such as Dilantin, may aggravate gum hypertrophy, and in
some children the overgrown gums need to be surgically trimmed back. A
dentist can help prevent tooth decay and gum hypertrophy, and can treat
these conditions if they occur.
What decisions Appropriate seating continues to be important for feeding, transportation,

need to be made and positioning for maximum hand use. All these functions can often be ac-
about seating? complished with one wheelchair that is Wtted with a lap tray and good chest
supports and, if needed, a headrest. Hip guides and hip abductors are some-
times necessary for proper lower extremity alignment. Some parents prefer
to use one chair for feeding, a stroller for mobility, and a separate seat with
a lap tray for play activities. One reason parents like this arrangement is that
it looks less medical or it makes the child appear less disabled.
As the child grows older and begins riding the bus to school, multiple
seating arrangements become more diYcult to manage. The problems arise

not only in terms of providing all these diVerent seating arrangements in
diVerent settings (at home, at school, and elsewhere), but also in maintain-
ing two, three, or four seats with proper adjustments for support. If the
family goes to a restaurant, for example, and the child has a properly Wtted
wheelchair adapted for feeding, all his needs—transportation, the freedom
of mobility, and the assurance of a proper feeding position—can be met with
one chair.
Strollers have the advantage of not looking like a medical device and of
being more easily transportable, but they have the disadvantage of provid-
ing poor trunk support for the child. The older child may also object to
the appearance of the stroller because she associates it with babies. And it’s
impossible for a child who is sitting in a stroller to push the stroller. For
these reasons, using a wheelchair can be a signiWcant symbol of growing up
and independence. A child with some limited ability to use her arms may be
able to push a regular wheelchair quite well, if it Wts her properly. Wheel-
chairs come in a variety of colors, and children generally enjoy having a say
in choosing a color.
Is this the right It’s often diYcult to decide whether to provide a child with a motorized
age to introduce a chair, and the decision is usually complicated by the fact that not everyone
motorized wheel- involved in the decision agrees. There has been much debate about Wtting
chair? power chairs to 2- or 3-year-olds, for example, but this is almost always ap-
propriate only for children with osteogenesis imperfecta (very brittle bones)
and arthrogryposis (very stiV joints). Children with these conditions are cog-
nitively normal and have normal balance and motor control. If they aren’t
walking by the age of 2, they aren’t likely to become fully functional walkers
and will be dependent on the chair for long-term use.
Children with cerebral palsy, however, are very diVerent in that most of
the children who would be capable of using a motorized chair at age 3 are al-
ready cruising and will be very functional walkers within the next year or
two. Getting a motorized wheelchair for such a child would be counterpro-
ductive. Conversely, most of the children who will eventually need a chair
are not able to handle the controls at a younger age, so a motorized wheel-
chair would be of no use to them. Thus, it seldom makes sense to introduce
a young child to a motorized wheelchair.
The most appropriate age at which to introduce a power chair is around
6 years. As with other things, this is an average, and some children who will
be able to handle a chair later, after they have grown and developed, will
not be ready for a power chair at age 6. Some children get around pretty
well with a walker from the age of 6 through age 8 or 9, while they are small
and in the lower grades. However, as time passes, the child’s need for mo-
torized transportation will probably have to be reevaluated. For one thing,
as children move into the upper grades the schools get larger, and the long
hallways may be tiring to manage with a walker. Another consideration is

the child’s increasing weight, which may also make it diYcult for her to use
a walker.
There are two areas of controversy regarding motorized chairs. Some
parents want their child to have a power chair even though it would not be
appropriate for her. These parents are often motivated by a desire to provide
everything possible for their child, and in their eagerness to provide for her,
they sometimes overlook the fact that her functioning level and safety aware-
ness must be considered with respect to handling the chair.
On the other extreme are parents whose child does some walking but is
too slow and unsteady to be a functional walker in a busy school environ-
ment. These parents sometimes worry that the child will stop walking and
regress if he has a motorized chair. This fear is unfounded. The situation is
similar to that of a 16-year-old who gets his Wrst car. Initially, certainly, he
wants to drive everywhere, and he does walk less often. But he doesn’t for-
get how to walk, run, or ride his bicycle. It soon becomes apparent to the
16-year-old that it is easier to walk to his friend’s house down the street than
to open the garage door, back the car out, and drive 100 yards. In the same
way, the child with some walking ability soon learns that it is easier to walk
around the house than to try to maneuver the wheelchair in close spaces.
Just as the teenaged driver must demonstrate competence before she can
get a driver’s license, the child with a disability must demonstrate compe-
tence before being allowed to operate a power chair. She must be able to
understand that pushing forward on a stick causes her to move forward
(playing with a video joystick is good practice for this). She must also un-
derstand about danger areas, so that she doesn’t drive over curbs or down
stairs. If she should drive into a corner, she must be able to back up and turn
around to get herself out. She must be able to see in order to drive a chair,
but she doesn’t have to be able to use her hand or Wngers to control the chair.
There are joystick controllers for power chairs (like the ones in videogames)
as well as head, mouth, leg, and foot controllers. The sensitivity of the con-
troller and the speed of the chair must be adjusted according to the child’s
age and abilities.
When children with cerebral palsy start to use power chairs, they may
have trouble with spatial perception at Wrst. For many children, this is be-
cause they have never moved around on the Xoor independently, and they
lack experience. Some children have vision problems, as well, or their bal-
ance may be poor, and this can further limit their ability to move appropri-
ately in space. The bottom line is that any child who is using a power chair
for the Wrst time needs training and guidance.
It is usually best to work in conWned spaces, such as a room in which ob-
jects are arranged closely together. This type of close maneuvering is usually
easiest for the child to learn because he or she has more experience manipu-
lating objects in a small environment. The best way to provide training for
the child is to walk in front of him, providing a focus of attention. It may take
some children months or even several years to learn to drive in a relatively
open area, and to stay on a sidewalk.
Parents should choose their child’s chair and controller, as well as seating
support systems, only after getting advice from school therapists and their
child’s doctor. The home environment and transportation systems must be
taken into account in making this decision, and parents should be prepared
to describe any limitations posed by either or both of these. For children
who are easy to Wt, selecting a chair can often be done within the school sys-
tem, where the child may even be able to take several diVerent kinds of chairs
for a test drive. For other children, it may be best to make these decisions
based on a short-term admission to a hospital’s rehabilitation unit, where
the child can be evaluated on several systems, and the parent’s home and the
available transportation system, as well as the school environment, are care-
fully considered.
It is usually not a good idea to select a chair in the salesroom of a wheel-
chair dealer. Typically, the dealer will carry only one or two brands and may
be motivated to encourage you to choose one of them. It’s possible that the
salesperson won’t even be well trained in satisfying the mobility goals of a
child with a disability. Our recommendation is to choose a chair in a set-
ting that provides both an unbiased opportunity for choice and the help of
trained personnel, as described in the preceding paragraph, and then pur-
chase the chair through a dealer with a reputation for good service.
For more information about diVerent styles of chairs, you might consult
the section on wheelchairs in Part 2 of this book. Another good source of in-
formation is other owners of motorized chairs, who can provide valuable ad-
vice about the reliability of local sales people and repair shops. Motorized
chairs generally require more repair and service than cars, so before you buy
a chair, it’s essential to know how and where you are going to get good ser-
vice. Some hospitals have wheelchair clinics staVed with persons who can
service the chairs.
What about You may have ongoing concerns about how or if your child will walk. As
walking? your child grows older, predictions become more reliable, so by this age
things are certainly becoming clearer. Again, it’s important to remember that
a child must have head control before he can sit independently, and he must
be able to sit before he can walk.
Can standers, By this age, almost all children should be in a standing program for weight
braces, and walk- bearing to help with bone development, body control, coordination, and
ers help? balance. Children who have diYculty controlling their ankles, either be-
cause they go up on tiptoe or because their foot turns or rolls into a Xat-
footed position, should have plastic ankle-foot braces made to help them
stand. Only children with the most severely aVected feet need ankle surgery,
and even then it is usually only a minor lengthening of the Achilles tendon
or transfer of half of the tibialis posterior tendon. Either of these procedures
will allow the foot to Wt properly into a brace. (Surgery for Xat feet is dis-
cussed in the next section.) Braces above the knee have no beneWt, and chil-
dren who can’t control their knees need to be placed in a stander that pro-
vides knee control.
Walkers in which the child sits (gait trainer) continue to be controversial.
Some therapists believe that the posture and movements of the child in the
gait trainer have a detrimental impact on development of balance and upper
body control. However, we know of no scientiWc evidence to support this.
Positioning devices (e.g., ankle prompts) can be added or subtracted from
the device to assist with controlling upper extremity, trunk, and lower ex-
tremity positioning. The biggest concern with walkers is safety. It is our
opinion that if the child enjoys being in the walker, and his parents want the
child in a walker and can watch the child very closely to keep him safe while
he’s in it, there is probably no harm in using a walker for short periods of
time, about one hour daily.
What hip prob- Spastic hip disease, or hip subluxation or dislocation, continues to be a big
lems can occur at problem at this age. Children with severe quadriplegia have an 80 percent
this age? chance of developing hip subluxation, and children with moderate quadri-
plegia and those with athetosis have a slightly lower, but still very high, risk
for this problem.
Hip dislocation, the end result of subluxation, can only be avoided if it is
detected and dealt with early. The surgical release of the tight, spastic hip
muscles is a relatively simple procedure and can often prevent dislocation.
Many children with severe cerebral palsy need bone surgery to place the hip
in a more stable position, however. If the dislocated hip remains untreated,
the surgical procedures for correcting the problem become much more com-
plex, placing the child at an increased risk for complications. To avoid ex-
tensive surgery and the possibility of complications, it is essential to con-
tinue close monitoring, with a physical examination every six months and
x-rays as needed.
Should I be con- Generally spinal deformities are less of a problem at this age than is spastic
cerned about my hip disease. Many parents are concerned about scoliosis, although at this age
child’s spine? it is still mostly due to poor upper body control and is best managed by good
seating support and by a standing program. Kyphosis (forward slumping) is
also due to poor upper body control, but it may be more diYcult to manage
than scoliosis. A harness or a reclining, tilting seat can be helpful. For some
children a body brace is useful for postural control, although this can create
feeding and breathing problems. Only rarely does kyphosis become stiV and
permanent. Your child’s spine should be routinely examined as part of his
scheduled medical care.
What about my Some children with severe athetosis may dislocate a shoulder because their
child’s upper body? posture is abnormal—for example, they may keep their arms above their
head and behind them. Lifting the child by the arms may also result in a dis-
located shoulder. The best treatment for dislocation is avoiding the activity
that caused the dislocation in the Wrst place, which may mean using a splint
that restrains the arm in a position down at the child’s side. This is especially
helpful at night.
Elbow tightness may cause a problem for dressing and bathing, but the
elbow is usually Xexible at this age. Short-term splinting is helpful. Splinting
may also be suggested as treatment for wrist Xexion and to keep the thumb
out of the palm. The advantage of a splint is that it keeps the tight wrist,
elbow, or thumb stretched out. The disadvantage is that the splint can de-
crease hand function. While it may be true that the contracted upper extrem-
ity becomes useless, it is also true that a continuously splinted upper extrem-
ity doesn’t have a chance of learning to function. For this reason, we only
recommend short-term splinting—usually just at night. Botulinum toxin in-
jection into spastic muscles can often be helpful with or without the combi-
nation of splinting.
Could my child The child with very tight hamstrings will not be able to extend his leg at the
have knee knee. At this age tight hamstrings, though a common problem, are not likely
problems? to be as troublesome as they may become in adolescence. Physical therapy
stretching exercises are generally all that is needed, and splinting is only
occasionally used. The child may get stiV knees, but they are usually due to
spasticity; again, stretching exercises are usually suYcient treatment. Botu-
linum toxin injections into the hamstring or quadriceps muscles for tight-
ness may be helpful if a contracture of the tendon has not occurred.
Do the feet pose The most common concern for parents is the tight Achilles tendon (heel
speciWc problems at cord), and this often can be managed with stretching exercises, Botox, and
this age? the use of a molded ankle-foot brace. A severe tightness that cannot be
modiWed by these methods may need to be lengthened surgically. If your
child cannot be Wtted with any type of acceptable footwear, or if the position
of his or her feet causes diYculty with standing, surgery is recommended.
Flat feet or feet that tend to roll out are also problems, and are most eas-
ily noticed when the child is standing. Using an AFO or a shoe insert, such
as a heel cup, is a good idea if it helps your child stand, but some braces try
to create an ideal arch and may cause your child discomfort. If the brace is
painful it must be repaired or removed permanently.
There is no scientiWc evidence that these braces make any permanent
change in the shape of the foot, particularly in shaping an arch. Sometimes
feet get better as the child grows and muscle control improves, and some-
times they get worse. The braces probably don’t have any eVect on this.
Comfortable braces often do make it easier for the child to stand, however,
and in this case they are helpful.
At this age, surgery should only be considered in the most severe Xat-
foot deformity, when bracing has proven to be completely unsuccessful.
Those who do have surgery have a fairly high recurrence rate and may need
to have repeat surgery at an older age. There continues to be a large spectrum
of opinion concerning Xat feet in cerebral palsy, and there aren’t many sci-
entiWc studies to back up any one opinion. The best thing to do, generally, is
to weigh all other options before turning to surgery for this problem at
this age.
What about my For the child with overlapping and cocked toes caused by spasticity, it is usu-
child’s toes? ally diYcult to wear shoes. At this age, the best treatment is to provide your
child with soft and roomy shoes. Soft silicone toe spacers that can be placed
between the toes may also be helpful in preventing callouses. If his toe
condition worsens, simple surgical treatment is available and often provides
good correction.

This is the age range when a child’s physical and cognitive potential can
usually be determined. By ages 8 to 10, children reach their maximum phys-
ical capabilities—their ability to sit, walk, and use their arms has fully devel-
oped. They may learn to function more eVectively, but signiWcant new abil-
ities do not emerge, as they did during their younger years.
As a parent, this may be an especially hard time for you as you continue
to work hard with your child and hope for gains while seeing less progress.
In addition, you may be receiving a good deal of input from your child’s
teachers and therapists, as well as medical personnel. Your child has now
been in the school system long enough, and therapists have worked with
your child often enough, to be able to deWne your child’s abilities with a fair
degree of accuracy.
Certainly, your child will continue to learn and will improve in some
physical abilities, as all growing children do. However, the pattern will now
be clearly established. This means that if your child is not walking by age 10,
he or she will never be an independent walker. If your child has not learned
to recognize any words by age 10, he or she clearly has a cognitive impair-
ment and will never learn to be a functional reader (unless the cause of the
reading problem is an untreated visual problem).
You can prepare yourself for this stage of development by accepting the
diVerence between the rapid developmental gains of the period from birth
to age 6 and the much slower rate of gain after age 6, and by understanding
that this contrast in development exists in normal children, as well. Your
child’s slowed development after age 6 may, however, aVect you psycholog-
ically and emotionally more than their child’s slowed development aVects
the parents of a child without disabilities. This is to be expected.
What kind of When adults with cerebral palsy are asked this question, their response is
therapy is most speech or communication therapy. These skills are especially important for
important? children who have a high cognitive level. If the oral speech is too diYcult for
strangers to understand or the child’s ability to speak is very limited, aug-
mentative communication should be provided.
What is augmen- Augmentative communication refers to a method of communication other

tative communi- than speech. Signing, a method of communicating with hand signals used
cation? by people who are hearing impaired, may be useful, although children with
quadriplegic cerebral palsy have too much upper extremity involvement to
sign eYciently, except for a few basic signs. The simplest augmentative com-
munication device is a communication board that displays pictures or words
appropriate to the child’s functioning level and current situation. These can
be hooked up to computers with speech synthesizers.
For the child who is severely involved physically and who has diYculty
using his hands, the use of eye signs is a good, simple way to communicate.
This form of communication is slow, however, because it essentially limits
responses to either a yes or a no answer. Head pointing sticks with computer
attachments are another option.
Developing an eYcient communication system should be a major part of
your child’s early education. Hospital centers with augmentative communi-
cation clinics can use a number of diVerent systems to evaluate your child,
usually on an inpatient basis. But you need to keep in mind that this process
is much like buying a wheelchair, in that there are many diVerent options
and prices, and it’s not wise to go to a dealer who may be inXuenced by what
he sells.
Parents may Wnd that paying for these devices is diYcult, since Medicaid
coverage varies from state to state, and insurance coverage may vary, as well.
In regard to insurance, it is important not to accept an initial rejection, but
to continue to resubmit until you are satisWed with the result. Organizations
such as local variety clubs, the Easter Seal Society, and churches may provide
assistance with funding. (See Chapter 10 for more information about Wnd-
ing sources of funding.)
Is speech therapy Yes. Most speech therapy for children with quadriplegia and severe cogni-
helpful for the tive disability, where communication is not a goal, focuses on teaching swal-
child whose cogni- lowing and feeding techniques. The therapist will evaluate swallowing func-
tive abilities are tion, if this has not already been done, and provide pointers to parents for
severely aVected? preparing food and feeding their child (see Chapter 3 for more details).
What is the role of An occupational therapist works with your child to develop functional skills
an occupational involving his or her hands. At this age, the focus should be on becoming in-
therapist? dependent with activities of daily living. For children who can write, im-
proving handwriting is a goal. For those who may have more upper ex-
tremity involvement, an occupational therapist helps the child develop skill
in using a keyboard. The occupational therapist also focuses on improving
function with the tasks of daily living, as well as Wnding positions in seating
and hand use that allow for optimum function. This becomes increasingly
important as children grow. Again, the therapy should be much more func-
tion oriented; focusing on stretching and exercising at this age is inappro-
priate. If stretching is needed, passive stretching with the use of nighttime
splints is more time eYcient and cost eVective.
The amount of time the therapist spends may vary from three times a
week with the child who is working on learning a speciWc new task, to a
monthly evaluation for the child who seems to be functioning well. If your
child is doing well in the classroom and functions well during play, it’s best
not to take time away from those things for therapy.
How much physi- This depends a good deal on the individual child’s needs and on the avail-
cal therapy is ability of therapy. As with occupational therapy, physical therapy should be
needed? balanced with school and play time. The child who is doing well academi-
cally should not be removed from the classroom for therapy unless there is a
speciWc short-term goal he or she is trying to achieve. In general though,
therapy gradually takes on the role of maintaining function rather than stim-
ulating new function.
For the child who is moderately aVected by CP and who is cognitively
normal, therapy should be functionally oriented, oVering as little interfer-
ence as possible in the child’s education. Such a child will be able to become
a contributing adult member of society by virtue of her cognitive abilities,
and her physical limitations will not be signiWcantly changed by hours of
therapy in late childhood. She needs to learn early on that her time and en-
ergy are more eVectively used in developing her intellectual abilities, and she
should be encouraged to succeed in this area.
As parents, you need to ensure that therapy time is spent on functional
skills and not on hours of preventive stretching exercises. These exercises
may temporarily prevent some stiVness, but they take valuable time from the
child’s educational development or from opportunity for socializing with
peers in play. Parents need to strive for a balance, keeping in mind that a little
knee stiVness is much less important than the development of a child’s intel-
lectual potential.
Children who are wheelchair dependent should not remain in a seated
position all day. They need to be given an opportunity for some exercise, and
the best way is by having them take part in an enjoyable activity, preferably
one that they can participate in for a lifetime. Swimming and adapted horse-
back riding are excellent options.
The child with severe physical involvement may Wnd it diYcult to get ex-
ercise and may need continued therapy provided by a physical therapist, or
an exercise program prearranged by a physical therapist and executed by
school personnel. Children with severe cognitive and physical involvement
should have routines worked out for positioning changes, adequate seating
with support, and a regularly scheduled standing program. The therapist
may also help the self-abusive child by describing methods of prevention and
protection to caretakers.
Determining how much physical therapy is appropriate for a speciWc
child depends upon many variables. At this age, the child who is doing well
in school and is not having speciWc new problems may touch base with his
therapist once a month or every six months, if he is in a program designed
by the therapist and carried out by school personnel. By contrast, the child
who has a speciWc problem that the therapist is currently working on with
him may need to be seen three times a week.
What kinds of There are two basic conXicts here. The Wrst is an issue of cost versus gain in
problems are there terms of the child’s development. Not every child with cerebral palsy, even
with therapy in those with moderate to severe quadriplegia, needs therapy. In fact, taking
school? some children out of the classroom for therapy might actually be harmful
in terms of intellectual growth. Second, in many schools therapists’ time is
quite limited, so that choices must be made about which children will ben-
eWt most from the available services. The Individualized Education Plan
(IEP) process provides the opportunity to evaluate the child in terms of his
best interests, but the parent who does not feel comfortable with the out-
come of that process may have to pursue the issue further.
Sometimes the child’s doctor prescribes therapy. If the child has had sur-
gery and postsurgical therapy is indicated, it is not necessarily the responsi-
bility of the school to provide this kind of therapy. Postsurgical therapy is
medically indicated and most likely is covered by medical insurance.
Separating therapy as part of education from therapy as a medical treat-
ment can be diYcult and may be complicated by the fact that schools
often don’t have enough therapists to meet their students’ needs. In ad-
dition, there are no absolute criteria by which decisions can be made
about which children need therapy in school. The parent or caretaker is usu-
ally the child’s strongest advocate, but the parent also needs to weigh
carefully the issue of cost of time lost in the classroom for the purpose of
therapy. If the school’s lack of therapists poses a signiWcant problem, parents
may consider forming parent groups and becoming active at school board
meetings to insist that the number of therapists in the school system be
increased.
Should my child The answer to this complex question depends on what’s available within the
be placed in a spe- educational system in the particular geographical area, as well as on the cog-
cial school, or nitive, physical, and psychological needs of the individual child. The pur-
would he beneWt pose of the IEP is to evaluate the child in terms of his or her educational best
from “inclusion”? interests, but if parents or caretakers are not in agreement with the recom-
mendation of the IEP, they should be willing to take on an advocacy role and
try to get the recommendation changed. (See Chapter 11 for more details on
dealing with the educational system.)
What can I do At this age excessive drooling can cause signiWcant physical problems, such
about my child’s as wetting books, papers, and computer keyboards. Occasionally if drooling
drooling? is severe, skin irritation can develop around the mouth and face. It is also
cosmetically unappealing, of course, and has the potential of being emo-
tionally disturbing to the cognitively aware child. There are several options
for treatment, including therapy (with a speech therapist), medication, and
surgery. (Drooling is covered in more depth in Chapter 3.)
Are there respira- If the child has had recurrent bronchitis or pneumonia over the years, he
tory problems at should be evaluated for aspiration of food or saliva. These problems tend to
this age? occur in children with more severe physical involvement. (This topic is dis-
cussed in Chapter 3.)
What dental care The severely involved child who has diYculty brushing her teeth and gums
is needed? often develops an overgrowth of the gums, sometimes covering the teeth
(gum hypertrophy). Some medications also cause gum problems. Gum hy-
pertrophy can lead to infections and tooth decay, so good oral care and reg-
ular checkups are essential. In some situations, gum disease must be treated
surgically.
What about my By this age, your child’s hearing should have been thoroughly evaluated.
child’s hearing? Even if your child had many ear infections earlier in life, the frequency
should be diminishing by the time he reaches this age. A child who contin-
ues to have infections needs to be thoroughly evaluated, as does a child who
has trouble breathing. Abnormal palate, infection or enlargement of the
adenoids, gastroesophageal reXux, and allergy may all contribute to ongo-
ing otitis media.
What about eye Any treatable eye problems should have been addressed by the time your
problems? child has reached school age. Children with moderate to severe involve-
ment, especially children with athetosis, often have diYculty tracking a mov-
ing object or focusing. These diYculties are often combined with dyslexia (a
reading disorder that causes letters or words to appear backwards), though
it may be diYcult to separate the problems from each other. One area of con-
troversy involves determining the appropriate eye therapy for these prob-
lems, with techniques varying in diVerent regions of the country.
What about feed- Feeding problems encountered when your child was younger continue at
ing problems? this age. (Problems related to swallowing, reXux, regurgitation, and consti-
pation are all addressed in depth in Chapter 3.)
Should my child Concerns about wheelchair use are essentially the same as those encountered
be in a wheel- in the previous age group. However, there are several issues that now be-
chair? come more important and need to be addressed for the 7- to 12-year-old. The
child of school age usually has started to become aware and concerned about
appearance. By age 6 or 7, strollers should not be used, especially for children
who want to start feeling grown up. An adult-type wheelchair, particularly
in a color that the child has chosen, is usually far more appealing.
Children who are dressed neatly and are seated in a good-looking chair
are attractive, and often people who come into contact with them will react
more positively toward them than toward a child whose physical appearance
has been neglected. This is especially true in public areas and in schools. For
the child who is aware, an attractive appearance also instills self-esteem. But
even when the child is not aware, parents will feel better if the child looks
comfortable and well cared for. Discussion about the use of a power wheel-
chair ought to be ongoing, especially for the child who is not quite able to
keep up pushing a manual chair, and for the child who is making cognitive
progress and is able to use power responsibly.
Is my child likely Osteoporosis (weak bones) occurs most commonly in the quadriplegic
to break bones? child over 9 years of age who is unable to bear weight. The causes of this
problem appear to be multiple. They include the lack of weight bearing,
poor nutritional intake, and the use of some seizure medications. Poor bone
strength may predispose the child to fractures of the long bones and, less fre-
quently, to compression fractures in the spine. The most common fractures
are seen in the lower extremities, especially above or below the knee. Most
broken bones occur from very minor trauma such as while moving the child
or during a physical therapy session. Many such fractures may go unrecog-
nized at Wrst, with the child having pain and crying for an unknown cause for
several days before the diagnosis is made. Initial x-rays may even appear nor-
mal if the fracture is nondisplaced. In such cases a special imaging study
called a bone scan is helpful. Nonambulatory children who are at risk for
weak bones or who have had more than one broken bone should be moni-
tored with a bone density test (DXA). Children with low bone density mea-
surements should have their diets assessed for mineral and vitamin content,
and their diets should be supplemented if some or all of these nutrients are
deWcient compared with the recommended dietary intake (RDI). More
severe cases may require treatment with a medication (called a bisphospho-
nate) that helps to improve bone strength. Treatment of a fracture is usually

nonsurgical and involves a very well padded cast. Surgical treatment is only
necessary in some severely displaced fractures (see Chapter 3 for more details
on the evaluation and treatment of low bone density).
What ankle and This is the age when the severe Xat foot causes problems with standing. If
foot problems the foot cannot be held in good position with a molded AFO, then surgical
might my child intervention is recommended. A lengthening of the heel bone (calcaneal
encounter? lengthening) or realignment of the heel (calcaneal osteotomy) can be per-
formed in some patients with the proper indications. These procedures
avoid fusion of the joints. Surgical treatment usually requires subtalar fusion
(the fusing together of two bones in the heel). The triple arthrodesis, in which
four bones are fused, is a procedure that yields a more predictably perma-
nent result. A lengthening of the Achilles tendon may also be recommended
at this age; it rarely needs to be redone at a later age.
Ankle deformities in children at this age usually make it diYcult for the
child to wear shoes or to stand properly. Addressing these problems is usu-
ally deferred until the child is older. For a full discussion, see “Ages Thirteen
to Eighteen” in this chapter, below. There are some minor toe problems at
this age which will become more prominent in adolescence. (These are ad-
dressed in the next section as well.)
What about my Tight hamstrings cause diYculties in standing, and may also cause problems
child’s knees? with sitting or lying down. When the child with tight hamstrings sits down,
the pelvis tends to roll back, causing the child to sit bent forward. As before,
physical therapy stretching is usually adequate. When the problem interferes
with activities of daily living like standing and sitting, however, then surgi-
cal release or lengthening is recommended. Tight rectus muscles cause the
knee to be held straight all the time and make sitting diYcult. Surgical re-
lease of these muscles is very helpful if this is a signiWcant problem.
Will my child’s Yes, the hips still need to be watched, especially hips that are borderline
hips still cause normal or that have been surgically treated for dislocation. This is especially
problems? true as the child approaches the adolescent growth spurt, when the hips may
again start dislocating after having been stable for a number of years. Hips
that are changing must be x-rayed every six months until they are treated or
are again stable for two years. As the child gets older, simple muscle releases
are less reliable as treatment and usually need to be accompanied by varus os-
teotomy of the femur and often a pelvic osteotomy, as well. These surgeries
correct the problem. Again, with close follow-up and appropriate treatment,
a child will not end up with a hip dislocation.
Sometimes longstanding, neglected hip dislocations become very painful.
The Wrst step in addressing this diYcult situation is to decrease the activity
to the hip, stop physical therapy exercises, and start anti-inXammatory med-
ications, like aspirin or ibuprofen (Advil). If this doesn’t work, then reduc-
ing the hip surgically may help, or the hip may be totally replaced with an ar-
tiWcial joint. Excision of the femur (castle or girdlestone operation) is almost
always ineVective at this age, because the child continues to grow and the
hips become painful again.
Are there any During childhood the function of the arms becomes fully developed and
problems with the contractures also start to develop. Occupational therapists will be working
arms? to help the child use his or her arms as much as possible, and especially for
activities such as self-feeding, manipulating switches, and using joysticks
and keyboards.
Some children with severe functional motor involvement develop con-
tractures that make dressing and bathing diYcult. Surgical release of arm
contractures may be considered, but surgery is usually not performed until
early adolescence. (This is discussed in the next section.) Splinting should
continue as long as it does not interfere with the child’s functioning.
Is spinal curva- As the child gets older and taller, especially as puberty begins, scoliosis usu-
ture a problem ally starts getting worse, and the child may bend more and get stiVer. The
now? best way of dealing with spinal curvature at this age is to make sure that the
wheelchair has good lateral chest supports. A brace is one way of helping the
child sit better, but usually the problems caused by the brace outweigh the
beneWts. Also, the brace does not have any impact on the eventual outcome
of the scoliosis. (For a full discussion of scoliosis, see the next section.)
Kyphosis, or forward bending of the spine, is usually at its worst at this
age. Even positioning a child in a chair may prove diYcult, because the chil-
dren tend to roll forward into a ball. Using a soft plastic body brace can help
correct this problem and make seating easier. Many children outgrow this
deformity, although there are a few who don’t, and these children may need
to undergo a spinal fusion, usually in early adolescence.

At this age independence is the primary goal, but how it is achieved varies
greatly depending upon the child’s physical involvement and cognitive abil-
ity. Normally during adolescence, children start to separate from their par-
ents and make plans for the future. The process of achieving independence,
though necessarily modiWed, should be encouraged in the child with cere-
bral palsy. The level of CP involvement clearly must be considered, but the
disability should not be considered to be inconsistent with independent liv-
ing. From a psychological perspective, it’s crucial to communicate this con-
viction to the adolescent.
Some adolescent personalities develop rather abruptly, whereas other
adolescent personalities undergo a long period of developing maturation.
Either way, adolescence is often a stressful time, whether or not the child has
a disability. It may be diYcult for parents of a child with cerebral palsy to sep-
arate the normal turmoil of adolescence from the problems related to the
disability. One thing to keep in mind is that the growth spurt and hormonal
changes of adolescence can aVect seizure patterns and otherwise aVect be-
havior in a child with CP.
After addressing some speciWc questions about problems that develop
or become more severe in the adolescent years, the remainder of this chap-
ter discusses issues of independence. In this discussion, we group individu-
als according to their predominant disability. Although categorizing chil-
dren this way is far from ideal, it does make it easier to take diVerences into
account. (Chapter 4 discusses many of these issues from a developmental
perspective.)
At this age, what Adolescents with an athetoid pattern may develop shoulder dislocation that
problems occur produces some discomfort, though the shoulder rarely remains out of the
in the upper joint. The best treatment is for the teen to learn to avoid the positions that
extremities? cause the dislocation. Sometimes this means avoiding putting the arm in a
certain position while sleeping (using a splint at night to keep the arm posi-
tioned at the side may solve this problem). Shoulder dislocation can be sur-
gically addressed with soft tissue repair. However, it may recur. Shoulder fu-
sion can be used to treat recurrent dislocations. Fortunately, surgery is rarely
necessary.
People with severe spasticity sometimes develop elbow contractures that
make it diYcult to clean in the elbow crease and that can make dressing diY-
cult, too. To address this problem, the biceps and brachialis muscles in the
elbow may be lengthened or released; the surgeon is careful to retain enough
muscle to keep the arm Xexible. In a similar fashion, the thumb can become
contracted (Wxed to the palm), making it diYcult to clean the hand. This,
too, is best addressed with surgery, which Wxes the thumb in a straight posi-
tion, permanently allowing easier dressing and cleansing.
Contracture is also common in the wrist, with severe Xexion to the palm
side. A minor surgical procedure, in which a tendon is transferred in order
to keep the wrist extended, can be very helpful. Small joint fusions in the
hand are sometimes helpful, but these should only be performed by sur-
geons experienced in the particular problems associated with cerebral palsy.
Some people gain signiWcant functional improvement, along with im-
proved cosmetic appearance, following upper extremity muscle release or
tendon surgery. Improved hygiene and cosmetic appearance are the most
likely results, with improved function a pleasing but uncommon result of
surgery. The hand of the individual with athetosis is problematic. Surgery
in these children is frequently complicated by a return of the hand to its
former position. For this reason, surgery is best avoided in the child with
athetosis.
What treatment Scoliosis, or side bending of the spine, occurs in children with hemiplegia
is available for and diplegia, but it occurs most commonly in children with quadriplegia.
scoliosis? Scoliosis is caused by poor muscle control. There is no known method of
prevention, nor any form of nonsurgical treatment.
This scoliosis is very diVerent from the scoliosis that nondisabled chil-
dren, most often girls, develop and that can be treated with braces. Unfor-
tunately, there continues to be a great deal of confusion among physicians
and therapists who are unaware of the intrinsic diVerence between the sco-
liosis related to cerebral palsy and the scoliosis of normal teenagers. The
treatments that are somewhat eVective for normal individuals have no eVect
on the individuals with cerebral palsy, because their scoliosis is directly re-
lated to the cerebral palsy.
Braces may be temporarily helpful for the child with cerebral palsy for po-
sition, particularly sitting, but it is often easier to use wheelchair modiWca-
tions to help the child sit upright, because these don’t have to be applied to
the child. But neither wheelchair modiWcations nor wearing a brace will have
any eVect on the development of scoliosis. In other words, by age 20 the
spine will be curved the same amount whether a brace has been worn full
time for 10 years or has never been used.
Braces give some children gastrointestinal, as well as respiratory, prob-
lems, and need to be remade as the child grows. Rigid braces can cause pres-
sure sores. When a brace is used, we prefer a soft brace made from a more
Xexible synthetic material. This type of brace is better tolerated by the child.
One advantage of the brace, however, is that it is worn under clothing and
therefore does not interfere with wheelchair support positioning as seasons
change and bulky coats are added and removed. Another advantage of the
brace is that it gives better support because it Wts more securely. There is no
harm in using both wheelchair modiWcations and a body brace.
In making the decision to modify a wheelchair or apply a brace, the pos-
sible risks and complications must be considered, with the overriding un-
derstanding that neither will have any impact on the continued development
of the spinal deformity. Some doctors think that the development of the sco-
liosis may be slowed, but there really is no evidence for this, and the con-
sensus among orthopedic surgeons who care for children with CP is that
there is no impact.
For the child who is severely physically aVected, there is a 75 to 90 percent
risk of developing scoliosis, and the only eVective treatment is a spinal fu-
sion. This surgery involves straightening the spine, placing steel rods along
the spine, and implanting bone graft so that the spine and the rods heal to-
gether as one bone. There have been great advances in this area of surgery,
and even children with severe curves can be adequately straightened so that
they can sit in a straight-backed chair.
This is a major operation, usually lasting three or four hours, and must be
performed by a surgeon who has experience with surgery for scoliosis asso-
ciated with cerebral palsy. The surgery for this scoliosis is diVerent, and uses
diVerent rods, from the surgery for scoliosis in normal adolescents. Most
children recover rapidly and are sitting up in a chair three or four days after
surgery, without the need for casting or bracing. And most of them are ready
to go home two to three weeks after surgery.
For children with very severe and stiV curves, it is sometimes necessary to
do an additional, smaller surgical procedure before approaching the back, in
order to remove some of the discs that become deformed and stiV between
the bony blocks (vertebrae). Although this adds approximately one more
week to the average hospital stay, it allows the surgeon to achieve a far bet-
ter result in the correction of the curvature.
Once the spinal fusion is complete, growth is no longer possible in the
spine, although the legs and arms continue to grow. Therefore, the ideal sit-
uation is to have the child grow as much as possible before the surgery with-
out the curvature becoming stiV and Wxed. This usually means delaying sur-
gery until the child is between 12 and 16 years old, but then only one surgical
procedure is necessary and usually provides excellent correction.
Sometimes a curve has become so severe by the time the child reaches age
8 or 9 that surgery must take place, sacriWcing some growth. This is a rare oc-
currence and is much more likely in a child who begins to develop scoliosis
at age 2, 3, 4, or 5.
What other spinal Kyphosis is a curvature of the spine in which the child bends forward and has
deformities might an appearance similar to that of an elderly individual. Kyphosis is very com-
occur? mon when children are young, but most children with cerebral palsy out-
grow this condition as they achieve better upper body control. A few chil-
dren develop stiVness and become Wxed in this position, however, which
may make sitting very diYcult. For these children, surgery can correct the
deformity by fusing the spine using bone graft and metal rods, similar to the
procedure described above for scoliosis.
Lordosis, the least common spinal problem in persons with CP, refers to
the curve in the spine which makes the arch in the lower back. This, too, be-
comes severely exaggerated in some children with cerebral palsy and causes
problems with sitting and often back pain. The only treatment is to perform
the surgery described above.
Spine surgery No surgery is without risk of possible complications. The parent and sur-
sounds frighten- geon should spend time together discussing the risks and beneWts of surgery.
ing. What compli- Clear and realistic goals and expectations must also be discussed. If the child
cations can occur? is medically involved, the parent must be prepared for a higher risk of com-
plications after spine surgery. The most frequent complications include
gastrointestinal problems, respiratory problems, and wound infection. The
child’s surgery should be performed at a hospital with an experienced pedi-
atric intensive care and medical staV, as all these complications are treatable.
In addition, intraoperative bleeding that requires blood transfusion should

be expected. An experienced pediatric anesthesia staV is critical during the
surgery to help manage this potential problem. It is important to keep in
mind that although complications can occur, the long-term beneWts of spinal
deformity surgery and keeping a child in a well-balanced upright position
outweigh the risks in the majority of children with CP. The decision to pro-
ceed with surgery is ultimately up to the parent and the beneWts should be
carefully weighed against the potential risks.
Do adolescents Children who have had problems with subluxating hips earlier in life need
generally have hip to continue to be watched, but not quite as closely as when they were
problems? younger. Now x-rays only need to be done every one to two years, and if the
hips are normal, only a physical examination may be necessary. Sometimes
the hips start to sublux again at the same time that the scoliosis is develop-
ing. If the hips are dislocating at this age, surgery involving the bone rather
than just muscle usually needs to be done. Often, a pelvic osteotomy is also
needed to reshape the acetabulum, or cup of the hip.
All eVorts should be made to prevent the hips from dislocating, because
dislocated hips often become painful later, and then they are very hard to
work with. Orthopedic surgeons experienced in dealing with CP are able to
keep the hip in the socket, and, with good treatment, to keep the hips almost
normal. It’s essential for the child to be checked regularly by a surgeon who
is experienced in the treatment of spastic hip disease.
This is the age at which the problems associated with the neglected dislo-
cated hip start becoming most painful. The Wrst course of treatment involves
avoiding activity that irritates the hip and using arthritis medications like
aspirin or ibuprofen (Advil, Motrin) to decrease the inXammation. Aceta-
minophen (Tylenol) is eVective for the relief of pain, but it is not eVective for
the treatment of inXammation, which is thought to be a major source of pain
in a condition such as this. If taking medications and avoiding certain activ-
ities does not eVectively manage the pain, then surgery is the next option.
There are a number of available procedures, but unfortunately none of them
has a high rate of success.
Putting the hip back into the joint is the Wrst step, if the arthritis is not too
severe. If this is possible, it has the best long-term results, although some-
times persistent stiVness or pain makes a second surgical procedure neces-
sary. The real advantage to this surgery is that there are good second choices.
Total hip replacement is another choice, but it is often technically diYcult
and potentially problematic. When it is successful, however, it gives an ex-
cellent result. Proximal femoral excision is yet another alternative. This sur-
gery involves removing the top portion of the femur (upper leg bone). This
surgery is used fairly frequently but can often result in a hip almost as painful
and occasionally as stiV. It is important to keep the child in traction for six
weeks following a proximal femoral excision to allow a scar to form.
Unfortunately, the high failure rate of the proximal femoral excision

leaves only the alternative of removing more bone. Each successive removal
of bone makes seating more diYcult, as the legs become shorter. This oper-
ation is the procedure of last resort. Another option may be to fuse the hip
joint, but this makes the child completely stiV. By far the best course of action
in terms of hip dislocation is prevention. Some children who have had dislocated
hips for several years have no pain and, in this case, we would recommend
leaving the hip dislocated. It would certainly cause the child pain to make a
surgical attempt to put the hip back in place.
As teenagers grow and hip muscles become tighter, diapering and per-
ineal care can become diYcult, particularly for menstruating females. When
the condition has reached the point where one person must hold the child’s
knees apart while another washes the child or changes the diaper, then
some surgical muscle releases should be considered. Osteotomy of the bones
at the hip, or relocating dislocated hips if they are recent dislocations with
little associated arthritis, are possibilities. Without surgery, this diYculty
with personal care will only become worse as the child gets older, stiVer, and
stronger.
Another common hip problem is the so-called windswept hips. This oc-
curs when one hip is contracted inward (adducted) and the opposite hip is
contracted outward (abducted). The primary problem is with positioning
the child in a sitting and lying position. The adducted hip may be dislocated,
requiring both muscle release (adductor release) and bone reconstruction
(varus osteotomy and acetabular osteotomy) whereas the abducted hip usu-
ally requires varus osteotomy only. The goal of the surgery is to realign the
legs to point them straight ahead as well as to treat the dislocated side (if a
dislocation is present).
What if my child It is not uncommon for both scoliosis and hip dislocation to occur together.
has both scoliosis If both are equally severe, the spine is usually treated Wrst, followed six
and a dislocated months later by treatment of the hips. Some children with severe hip pain
hip? Should one be and a mild to moderate scoliosis must have their dislocated hip treated Wrst,
treated before the to alleviate hip pain, before the scoliosis is treated. Both treatments have been
other? previously discussed.
What are some Tight muscles behind the knees (the hamstrings) that prevent the knees
common knee from straightening out is the most common problem in children who don’t
problems at this stand. These muscles sometimes become so tight that the child has a prob-
age? lem settling her feet comfortably on the footrest of the wheelchair. It may
also be diYcult for the child to lie down if she can’t straighten out her knees.
Children with this problem often position themselves so that one leg is
turned out and the other in, or they lie and sit with both knees spread far
apart. This makes sitting diYcult and is also not cosmetically appealing, es-
pecially for females.
If the child is able to stand and these muscles become tight, they should
be surgically lengthened in a procedure that will allow the child to stand
as straight as possible. Occasionally, though rarely, the hamstring contrac-
tures can be severe enough that they can’t be released suYciently to correct
the problem. When this occurs, a distal femoral osteotomy, in which the
femur bone is cut and extended just above the knee joint, often produces
good results.
In contrast to hamstring tightness, which causes the knee to be Wxed in a
Xexed position, is the knee that can’t bend. This is usually caused by spastic-
ity or contracture in the rectus muscle, which is located in the front of the
upper leg. This situation makes it very diYcult for the child to sit in a wheel-
chair, and sometimes the muscle is so tight that the child’s feet become sore
from being kept forcibly secured to the wheelchair.
Mild cases of rectus tightness can be treated with stretching exercises that
are done when the child is being dressed or transferred. The surgical release
of the rectus muscle is a fairly simple procedure that should be considered if
seating is a problem. Knee problems that are more of an impediment to
walking or standing are covered more fully in Chapter 6.
Could my child Two common types of foot problems occur in older children, feet that point
have problems down and in (equinovarus foot) and feet that point down and out (equino-
with his feet? valgus or planovalgus foot). A good foot position is necessary to allow for
proper standing and shoe wear. Treatment options include (1) accepting the
deformity and accommodating the deformed foot with soft comfortable
shoe wear, (2) controlling the foot deformity with bracing, and (3) correct-
ing the deformity with surgery.
Although standing is recommended, there are children who do not stand.
If these children have foot position problems, it is preferable not to force
their feet into shoes or braces. Rather, their feet can be kept protected and
warm with slipper socks, slippers, or soft moccasins. There are many readily
available options that are both inexpensive and comfortable.
The child who weight bears with a less severe (Xexible) foot deformity
can usually be held in a brace with the foot in a good position. It must be re-
membered, however, that bracing has not been shown to prevent or perma-
nently change any foot problems. When a child’s foot deformity is severe,
causing diYculty with standing in a child who weight bears, or the child’s
skin is breaking down because of rubbing against shoes or braces, the
problem needs to be addressed surgically. Equinovarus foot deformity may
be due to spasticity or contractures. Releasing or lengthening the Achilles
tendon and lengthening or transferring part of the posterior tibial tendon are
helpful procedures when there is minimal bone deformity in the foot.
Equinovarus deformity with deformity in the bone and most severe equino-
valgus deformities do well with a triple arthrodesis or subtalar fusion, in
which joints that are causing the problem are fused. Most children who do
not stand do very well in soft shoes and do not require surgery.
What about the A common toe problem is the severely cocked-up, or Xexed, big toe. This oc-
toes? curs most commonly in adolescents with athetosis. Wearing shoes is often
diYcult and painful, because sores develop. Two options are available. First,
the child can wear very large, soft shoes with a large toe box. Or the defor-
mity can be corrected surgically, by fusing the big toe joint. The Wrst option
oVers the easiest solution, although the surgical procedure is relatively simple
and usually gives an excellent result that lasts the rest of the child’s life.
Cocked-up toes or overlapping toes may be a problem in the small toes
and may also cause sores when the toes rub against a shoe. They can be
dealt with surgically, by a minor procedure in which a small joint is excised
and the toes are fused straight, or the adolescent can wear large shoes to pre-
vent the formation of sores. None of these toe problems should be seen as
an emergency. The surgeries can be done with the same success at age 10 or
age 80.
Similar problems may occur from severe bunions, and these, too, are best
treated with correction and fusion. A person with cerebral palsy has a diVer-
ent kind of bunion from the bunion deformities that other people get, and
this bunion should not be treated in the same way that those other deformi-
ties are treated. If the person with cerebral palsy has a standard bunion
operation, the bunion will recur. It is generally best not to have the same sur-
geon who did a good job on grandmother’s bunions operate on the adoles-
cent with cerebral palsy, unless that surgeon is familiar with the essential
diVerences between these deformities.
Ingrown toenails can also be a problem and are usually caused by trim-
ming the nail back too far at the edges or by the nail rubbing against the
shoe, causing the shoe to dig into the Xesh of the toe. If the toe becomes in-
Xamed, it can be treated initially with warm water soaks twice daily. Con-
tinued irritation from wearing shoes should be avoided. For severe inXam-
mation, antibiotics may be needed, and some people develop an abscess
that needs to be drained. Nails should be trimmed frequently, and straight
across, not rounded. Recurrent ingrown toenails may require partial toenail
excision.
What methods Increased muscle tone or spasticity may cause diYculty with positioning,
can be used to con- problems with proper hygiene, or sometimes pain. The role of muscle sur-
trol my child’s gery in treating tight muscles has already been discussed. Other methods
spasticity? that are used to help control high muscle tone include oral medications,
medication that can be injected directly into the tight muscle, and surgical
implantation of a pump to reduce muscle tone.
Oral medications can be used to help control muscle tone. However,
their use is usually limited. Although many people generally feel that these
drugs are noninvasive, this is a misconception. These drugs all act at numer-
ous sites in the brain and spinal cord and can therefore alter or depress many
functions including alertness, mood, cognition, and personality. The physi-
cian prescribing the medication should carefully monitor for these side
eVects. Two commonly used drugs are Valium and oral Baclofen. Valium is
best used for a short time such as to help control postsurgical muscle spasm.
Long-term use frequently results in tolerance with the drug becoming less
eVective. Drowsiness is another common problem. Oral Baclofen has been
shown to have better eYcacy in head injured children and spinal cord injured
children with spasticity. Its use in the child with CP is limited. It may cause
diYculty with seizure control in children with seizures. It also must be
weaned slowly when being discontinued.
Botulinum Toxin A and B are available for oV-label use (the medication
is approved by the FDA, but not for this purpose) to control spasticity in
some tight muscles. Botulinum Toxin is best used when there are speciWc
muscles (six or fewer) that are spastic. It is a relatively safe drug without
known systemic eVects if it is not injected into the bloodstream. It acts lo-
cally within the injected muscle to block the release of some of the nerve sig-
nals to the muscle. There are very few side eVects, which may include some
temporary soreness within the injected muscle.
In children with generalized spasticity (increased muscle tone involving
arms, legs, and the trunk muscles), Baclofen can be given directly into the
spinal canal by a small pump surgically implanted under the skin (called in-
trathecal Baclofen). This method allows the Baclofen to be given in much
smaller doses than the oral medication because it is acting directly on the
nerves in the spinal cord to control the high muscle tone. The pump is about
the size of a hockey puck and is surgically placed under the skin in the lower
abdomen. A small plastic catheter is tunneled under the skin around to the
back and then inserted into the spinal canal, where it infuses a very small
but constant dosage of Baclofen. It can help to relax high muscle tone in the
legs, trunk, and arms. Parents must be willing to bring the child in to the
physician who manages the pump every 4 to 12 weeks to reWll the medica-
tion inside the pump. This is done with a small needle stick through the
skin into a port on the pump. Intrathecal Baclofen has been extremely help-
ful in managing high muscle tone in the quadriplegic patient. The pump is
best placed and managed at a medical center that is set up to do a preopera-
tive assessment and trial to test the eVects of the medication in the child be-
fore the pump is actually surgically implanted, as well as follow-up care after
implantation.
What are the Adolescents who are cognitively normal and mildly involved phys-
issues of indepen- ically. For adolescents who have normal intellectual function and are able
dence for adoles- to walk with assistive devices, the issues are essentially the same as for nor-
cents with various mal teenagers—allowing for a great deal of variation with respect to indi-
degrees of vidual response. All teenagers want to be “normal,” but their idea of nor-
involvement? mal is often based not on reality but on perceptions acquired from the
media and on their personal fantasies. They may form unrealistic goals
about their weight, their skin, and their muscle strength. Ultimately, most
children in this group will be incorporated into society and will have jobs
and families.
Some children with disabilities focus so intently and exclusively on over-
coming the disability that they require psychological counseling to help
them gain perspective. Some children in this age group have unrealistic ex-
pectations about the outcome of surgical procedures, too, and they may
perceive surgery as unsuccessful. This is primarily due to the child’s unreal-
istic hope for a cure. That expectation may persist even when the treating
physician gives the child a detailed explanation of the procedure and its ex-
pected outcome.
Adolescents who are cognitively normal and moderately involved
physically. Children with more severe involvement, and especially those
with speech and movement disorders, often Wnd adolescent socialization,
including dating, diYcult. Most teens are initially awkward with members
of the opposite sex. As a coping mechanism, they often strive for conform-
ity in dress and values. The adolescent with a physical disability clearly has
more to deal with in terms of socialization. It is therefore not unusual for
teens with disabilities to have limited sexual and socialization experience.
Adolescents who are not able to walk and need some assistance with ac-
tivities of daily living, such as bathing or dressing, can be fairly independent
most of the time and usually have adequate communication skills. Their
problems are very similar to those of the previous group, but they have ob-
vious limitations and they need help in areas where normal children have
outgrown the need for help. Teenagers typically become secretive and self-
conscious about their bodies at this age. A teen who requires assistance with
bathing or dressing is likely to experience some conXict about this.
At this age, it may become apparent to the child that total independence
is not a realistic goal. If a child has not achieved this by the age of 16, it’s un-
realistic to expect that he will be capable of independent self-care in the fu-
ture. Accepting his limitations may take considerable psychological work.
Parents and therapists should focus on helping the adolescent learn how to
direct his own care, providing both realistic goals and a sense of control.
One way to foster maximum independence is through independent liv-
ing training, which is often available in rehabilitation facilities. The goal is
for the child to learn to do all he can for himself, as well as to learn how to
direct untrained individuals to help him do the remaining things. The best
age for the adolescent to work on this training is between 12 and 16 years.
Independent living training in a rehabilitation facility is also an excellent
method of working on separation issues. The training usually takes place
over a period of weeks at a residential facility. It may be the Wrst time the par-
ent and child have been separated for an extended time. It may actually be as
hard for the parent as for the child, if not harder. However, this is an essen-
tial part of growth and maturity, and the child should be provided the op-
portunity and freedom to develop his independence. Parents need to let go

with the understanding and realization that they will not always be around
to provide for their child. Additionally, the important planning for the pos-
sibility of college or work cannot be eVectively accomplished if the issue of
separation has not been addressed.
It is important to respect the maturing child’s right to privacy, though this
may be somewhat diYcult for a teen who needs help with toileting. Closing
doors and respecting the teen’s requests for privacy whenever possible is es-
sential. Adolescents in this group often have little opportunity to work on is-
sues of sexual socialization, primarily because they are still working on issues
of separation. These teens need to be oVered opportunities to be involved
with their peer group within the community.
Adolescents who are cognitively normal and severely involved physi-
cally. All the issues that apply to adolescents with moderate involvement
also apply to adolescents with severe physical involvement. But the adoles-
cent with a severe disability also needs help with all activities of daily living
and usually requires an alternative means of communicating. DiYculties in
the areas of daily living and communication can be very frustrating and en-
ergy consuming. It is understandably upsetting for the adolescent when
people don’t take the time to try to understand her and assume that she is re-
tarded. Every eVort should be made to plan for the future; adolescents in this
group eventually need to become self-suYcient with the help of a full-time
trained aide.
A child who is severely involved is usually not able to direct an untrained
individual in her own care, and plans should be in place to ensure that trained
caregivers with whom the child is comfortable are always available. This is
especially important in the event the child needs to go to the hospital or to
be cared for by a caretaker other than the one to whom she is accustomed.
For a child who is unable to communicate orally, it’s imperative to seek med-
ical treatment at a facility whose staV are familiar with the needs of individ-
uals with severe disabilities, or to make certain that knowledgeable, trained
caretakers are present to be sure that the child receives adequate care.
A teenager in this group almost never has an opportunity for sexual so-
cialization as a teenager and only occasionally as an adult. He or she has sex-
ual feelings and desires, though they may be diYcult to address. (This aspect
of development is discussed further in Chapter 4.) The teen’s diYculty in
communicating, as well as the attempt to cope with normal maturation
issues, often leads to withdrawal and depression, and this may not be recog-
nized or addressed properly because of the communication diYculties. Pri-
ority should be given to providing communication systems for these ado-
lescents. This is probably the single most important service that the medical
care system can provide. (See earlier sections for information about com-
munication systems.)
Adolescents with mild cognitive and physical involvement. Ado-

lescents with mild cognitive impairment who are able to walk, with or with-
out the use of assistive devices, face issues that are very similar to the issues
facing children without disabilities. However, they need additional struc-
ture and guidance concerning schooling, training, and, ultimately, job op-
portunities. They also need to be given the same opportunities to fail that
parents give to normal teenagers, although achieving a balance of help, guid-
ance, and letting go is never easy.
Adolescents in this group may have signiWcant diYculty dealing with so-
cial interactions, and their diYculty may show up as depression or anger.
Parents should make it possible for these teens to discuss their feelings with
a professional counselor before the feelings become overwhelming. With
proper guidance and within the appropriate environment, most of these
youngsters become fully self-suYcient members of society.
Adolescents with moderate cognitive and physical involvement.
Although many of them are able to walk with assistive devices, these adoles-
cents need to be in a structured and supervised living and working environ-
ment because of their cognitive limitations. If the adolescent is presently
cared for at home, the main issue of concern for the family is to plan for the
future, when the current primary caregiver will not be able to care for the
child. These plans should be recorded in writing, and they should be de-
scribed to the teen’s next of kin.
If institutional care is likely to be needed in the future, facilities should
be investigated in advance. One of the very attractive alternatives to institu-
tionalized living is the structured group home, in which the person is able to
move away from home but still lives in the same community and is able to
go home on weekends and holidays. This arrangement closely parallels the
situation of the child who leaves home when he Wnds a job but continues to
be involved with his family in the same community.
Adolescents with severe cognitive and physical impairment. Ado-
lescents in this group need full-time trained custodial care. They don’t have
all the psychological problems that beset adolescents with milder involve-
ment, however. The main issue for this group is the need for good planning
for the future. If the parent is the sole full-time care provider, then plans must
be made for alternative caregivers. The parents of severely involved children
often have the misconception that their child has a short life expectancy.
However, the vast majority of individuals who reach their teenage years will
probably outlive their parents. Thus, long-range planning really is a neces-
sity. Additionally, unexpected events such as an accident or illness sometimes
make it impossible for the primary caregiver to continue to provide care.
If no alternative plans have been made, the state social service agency will
assume responsibility for the child, who will be placed in whatever facility is
available, often without regard to what the parents may have wanted. Rather
than let this happen, it is far better to make arrangements with a facility or
with other individuals willing to provide the necessary care before some-
thing interferes with the present arrangements. Ideally, an alternative care-
giver will previously have provided some care, perhaps as respite care, and
will be familiar with the teenager and his needs. Having some familiarity be-
forehand with the new caregivers also provides the child with comfort and
security in a new environment, if the need should arise for a move.
Parents must allow themselves the opportunity to ask how much longer
they can continue to care for their child. This is a diYcult issue and one that
can lead to conXict between parents. Divorce, unfortunately, is a fairly com-
mon result of the strains and conXicts that prevail in the family of a child
with a severe disorder. Some parents are poorly equipped to handle the ex-
tra stress, and some are not willing to give up a previously pursued career in
order to provide full-time care of the child. Once a parent has psychologi-
cally come to terms with the extent of care that he or she is willing person-
ally to provide, there are various alternatives to consider.
After taking into account many factors—such as the home environment,
schools, siblings, availability of respite care, and Wnancial resources—parents
may decide that it’s better for the child to be in another environment. They
may choose to relinquish parental rights and never see the child again, or
they may place the child in a group home or chronic care facility and visit the
child there or bring the child home for weekend and holiday visits.
Another option is foster care, in which the child is placed with another
family for care. In this arrangement, the parents retain their rights and have
the opportunity to take the child on weekends, special occasions, or when-
ever they want to spend time with the child. There are some caregivers,
mostly women, whose occupation as foster parents is to care for children
with disabilities. Many of these persons provide excellent care, although
their services are in great demand and they are hard to Wnd. Some individu-
als providing foster care, however, lack either the appropriate skills or other
options for work, and they may be motivated by selWsh needs not always
leading to the best care for the individual. So, this choice may provide the
child either with the best of care or with very poor care, primarily because
there is little supervision over the care provided. Parents need to thoroughly
investigate any situation that they are considering for their child.
There should also be some discussion about the level of medical care
which parents want to provide in life-threatening situations. This is an emo-
tionally charged subject in which religious, ethical, and practical factors are
intricately interwoven. Parents need to reach an understanding in advance
about their wishes for their child’s care so that they aren’t faced with making
a diYcult decision without having Wrst given this issue serious consideration
and discussion. Parents should also make sure that any doctor treating their
child is well aware in advance of their wishes regarding medical treatment in
a life-threatening situation. Discussing these decisions allows the parents
and the physicians to become comfortable with them. Many parents decide
to provide all the care necessary to ensure the child’s comfort (such as cor-
recting scoliosis) but not to take heroic measures to prolong life (such as per-
manently putting the child on a ventilator). This includes doing everything
possible to improve the ability of caregivers to care for the child.
Often there are diYcult decisions to make, and it seems as if a Wne line is
being drawn between providing medical care to improve the child’s quality
of life and providing care to prolong life. If, for example, a child’s kidneys
fail, a plan to transplant a kidney in order to prolong the child’s life might
well be decided against fairly readily. A decision regarding gastric surgery for
a child who experiences frequent pneumonias related to reXux and aspira-
tion may be more diYcult to make, particularly if the pneumonias respond
well to antibiotic treatment.
The decision to operate on a severely involved child can be very diYcult.
Scoliosis is usually treated with surgery, because, although it is major sur-
gery, the result allows for better seating and more comfort. But if a child de-
velops a severe bowel obstruction, the parents may elect not to have surgery
because a bowel obstruction usually brings on death quickly, without much
pain, whereas the surgery for bowel obstruction may involve a very long re-
covery period with a great deal of discomfort.
Clearly, such decisions must be made on an individual basis. They are eas-
ier if parents and physicians have established a compatible working relation-
ship before an acute situation arises. Then parents can be more comfortable
with their decisions and can be conWdent that the physician is prepared to
abide by those decisions.
The Adult
with
Cerebral
Palsy
8 ♦ C H I L D R E N with cerebral palsy become young adults, middle-

aged adults, and older adults. They live in a community and relate to their
families. In fact, they deal with many of the same issues that nondisabled
people do. The purpose of this chapter is to provide some insight into how
the adult with cerebral palsy deals with the process of aging.
Aging can be considered the counterpart of growth and development in
the child, the main diVerence being that aging takes place over a longer time
and with more variation from one individual to another. The person with a
disability attempts to meet all the challenges of the nondisabled person, with
some additional challenges thrown in. Concerns usually center on indepen-
dence, intimate relationships, and employment. There may be signiWcant
psychological issues as well, and the adult with cerebral palsy may Wnd it
more diYcult than the child to obtain medical care.
The degree of diYculty a person encounters in establishing independence
depends on the individual person and his or her family, as well as on the
severity of the disability. This transition is much harder for adults who need
the most care. Generally, children who have functioned well in a regular
school environment can be expected to meet the challenge of transition to
adulthood and independence in much the same way that their classmates or
siblings handle this process. For some teenagers or young adults, however,
having a disability makes it psychologically diYcult to establish a positive
and healthy self-image. For those who have previously functioned well in a
regular school setting, this is most likely an adjustment reaction to the tran-
sition process (similar to the diYculty the child without a disability has in ad-
justing to going oV to college or breaking up with a boyfriend or girlfriend).
Whenever problems such as depression or behavioral changes emerge, they
What are the should be taken seriously and psychological counseling should be obtained.
important issues
for the person with The important skills learned at this stage are socialization skills, especially
cerebral palsy dur- the development of intimate relationships. Dating and trying to gain ac-
ing the transition ceptance from peers can be very traumatic for any young adult, but the eVort
to adulthood? required of people with CP can be draining. They may have to use 100 per-
208 ♦ the adult with cerebral palsy
cent of their energy just to keep up with their peers who are only giving
25 percent. As they move into the adult environment, with more competi-
tion and without the buVered environment of school and a supportive home
environment, individuals with CP often experience fatigue, both from the
increased psychological stress of dealing with a less receptive environment
and from the physical stress of the increased physical demands present in a
college or work environment. They may get worn down from the Wght to
keep up.
Another source of stress that may not be fully encountered until the per-
son leaves school and tries to enter the job market is prejudice against people
with a disability or handicap. If she is a woman or a member of a racial mi-
nority, this can compound the prejudice that she may experience. Under-
standing their rights, forming alliances with others in minority groups, and
being willing to openly confront discrimination are important mechanisms
for people with disabilities who are dealing with prejudice.
Young adults are quite self-conscious and concerned about their personal
image, and their partner is often seen as an extension of themselves. A
young man often tries to enhance his self-image by being seen with a beau-
tiful young woman, and vice versa. The stresses generated by the cultural fo-
cus on physical appearance are present not only for the person with cerebral
palsy, but for many people who are not considered perfect. However, this is
also a stage in life when individuals are learning that there is more to a per-
son than appearance. It becomes clear that a relationship is much more de-
pendent on communication, understanding, mutual care, and concern.
This lesson can be fostered in group environments, which allow individ-
uals with disabilities to learn socialization and intimacy skills and to meet
suitable marriage partners. Many group environments are organized around
special interests, social activities, and spiritual concerns. This type of social-
ization certainly provides an advantage over the generally accepted norm of
meeting the ideal partner in an environment Wlled with strangers. Meeting
people under traditional dating circumstances is especially hard for people
with a disability because of the very real physical and psychological barriers
present between themselves and the nondisabled population. People living
in areas where they are having problems meeting others for friendships or
romantic relationships might consider using a dating service, either one
found on-line or in periodicals that serve people with disabilities.
Adults with Impairments

Adults with impairments due to cerebral palsy are typically people who
can manage all activities of daily living without needing to expend signiW-
cantly more eVort than the nondisabled population. This includes most
people with hemiplegia and many with diplegia who have normal cognitive
function. By deWnition, an impairment is an abnormality of body structure
the adult with cerebral palsy ♦ 209
or function, such as spasticity or contractures, that does not actually cause

any limitation in the performance of one’s usual activities.
Howard is a 39-year-old man with mild to moderate right side hemiple-
gia who currently works as a computer program systems analyst. He has
been married for 10 years and has three healthy, active boys, ages 2, 5, and 8.
Howard and his wife, Joan, have always had open communication concern-
ing his impairment. The only problem cerebral palsy caused him in terms of
parenting was learning to carry and care for his newborn infants. Due to his
aVected right arm and hand Howard was afraid that he might drop them.
But this was easily solved with a little practice.
Having children made Howard think about how he would feel or how he
would deal with the situation if one of his children had a disability. He had
no answers to this question, except to want to pass on to his own children
some of the same lessons he learned while growing up, speciWcally that it is
important to Wnd your own way of making things work. The children know
that their father types with one hand very eVectively and that he had a high
school teacher who helped him learn to type.
Howard has not had any medical problems since a foot operation at age
17. He can’t quite extend his right elbow all the way, and he does have a slight
limp. These are so well integrated into Howard’s movements that very few
of his co-workers even know that he has cerebral palsy. He golfs, swims, wa-
ter skis, snow skis, and goes sailboating. He does not have a special exercise
program, but when he notices some tightness or stiVness, he knows he needs
some physical activity. He does sometimes worry about developing a neu-
rological or orthopedic problem that would signiWcantly alter his activity or
functional level.
Howard started as a physical therapy major in college, but in his third
year he switched to nursing. After graduation he trained as a rehabilitation
nurse specialist and worked for 10 years, until he felt a need for a change. By
working evenings, he earned a degree in business administration and changed
his career from nursing to computer systems analysis.
What are the These adults generally get married and have children and enjoy a lifestyle
usual living that is very similar to that of the general population. SpeciWc problems re-
arrangements for lated to cerebral palsy are usually minor from a medical perspective, but they
adults with may be more signiWcant in relation to occupational choices.
impairments? Howard has experienced some discrimination, especially when he wanted
to enlist in the Air Force Reserves for extra income as a rehabilitation nurse
and was told that he could not apply because he had cerebral palsy. This was
tough to hear, especially when he wasn’t even evaluated with respect to how
much his impairment aVected him. Another time he was asked if he had a
physical disability while renewing his driver’s license. When he said yes, he
had to repeat the entire driving test, even though he had been driving for six
years with no change in his condition. This almost resulted in his having to
pay higher insurance premiums. He later realized that he should have said
no, since he is impaired, not disabled. He learned quickly that using the right
terminology is important in many situations.
The Americans with Disabilities Act makes employment discrimina-
tion in the private and government sectors illegal. If you think that you’re
being discriminated against, check with legal counsel and learn what your
rights are.
What about Job discrimination against individuals with an impairment still goes on, al-
discrimination? though with the extension of equal opportunity rights to people with dis-
abilities, the incidence of discrimination should decrease. The largest area of
overt discrimination continues to be with health, disability, and life insur-
ance. Obtaining insurance coverage usually is possible only if the person can
join a group plan carried by an employer. The health insurance system is
changing rapidly, and there is increasing public recognition of discrimina-
tion in these areas. Educating lawmakers about the needs of people with dis-
abilities has had a very positive impact. You can participate by contacting
your representatives and expressing your concerns.
Adults with Functional Limitations

Adults with functional limitations are primarily those with moderate to
severe diplegia or mild to moderate quadriplegia. Such adults are able to
be independent, but their impairment signiWcantly restricts their ability to
perform certain activities of daily living. Their occupational choices and re-
lationships may be inXuenced by their impairment. Most people in this
category have normal cognitive function, although some people with mild
mental retardation could also Wt into this group. People with only physical
impairments have somewhat diVerent problems from those encountered by
people who also have cognitive diYculties. The discussion in this section fo-
cuses on the issues faced by people who have only physical limitations.
Sam is 46 years old and works as a mechanical engineer in the research di-
vision of a major company. He has athetoid patterned cerebral palsy with a
moderate degree of involvement in his hands and arms. He is able to walk
without using any aids, but he has speech diYculty, especially when com-
municating with people who don’t know him. He grew up in a very sup-
portive family with a mother who he feels protected him too much but with
a father who pushed him with appropriate expectations. Because he loved to
build things, his father encouraged him, never pressuring him about time.
His father’s patience fostered an early interest in engineering. In grade school
he was thought by several teachers to be retarded because of his speech diY-
culty, especially when they met him for the Wrst time and did not have the pa-
tience to listen to him and understand him. Because of this diYculty and at
the insistence of his father, he was placed in a special education class where
the teachers took the needed time and interest in his abilities. In the special
education classes he excelled academically.
After Sam graduated from high school, his vocational rehabilitation ad-
viser thought Sam’s interest in going to college was a waste of time and
money, and he discouraged Sam from applying to schools. Sam feels this
was in part due to the fact that the state vocational rehabilitation system
was always short of money and tried to Wnd the cheapest thing to do for cli-
ents, sometimes without thoroughly considering their interests and abili-
ties. Initially, too, he was told that he could not pursue a major in engineer-
ing because he could not draw. By devising his own mechanical aids for
drawing, he managed to draw so well that his instructors told him he had the
best mechanical drawings they had seen in a master’s degree thesis. Ironi-
cally, then, Sam graduated from college with a master’s degree in mechani-
cal engineering.
Ellen and Sam met through personal advertisements placed with a dating
service for people with disabilities and were subsequently married. Ellen is
44 years old with a moderate to severe spastic quadriplegic pattern involve-
ment of cerebral palsy. She has normal speech but is not able to walk. She
uses a wheelchair, which she can push for short distances. She can do most
activities of daily living by herself. Ellen also grew up in a very supportive
family, and both her parents encouraged her to be all she could be, within
the scope of her limitations. She entered a regular kindergarten and re-
mained in mainstream educational classes all through high school. She com-
pleted four years of college and works as a travel agent. Ellen remembers her
educational experience diVerently than Sam, since she did not receive the
“retarded” label, largely because her speech wasn’t aVected.
Because of these diVerent experiences, Sam and Ellen have somewhat
diVerent feelings about the current push to mainstream children in school.
Sam feels it may at times be a way for the system to save money and may not
be in the child’s best interests, especially a child with signiWcant speech prob-
lems. Both Ellen and Sam, however, support inclusion whenever it works
for the child, as it clearly did for Ellen. They both worry that the attempt to
have the child in a “normal” environment may dominate and that, as a con-
sequence, the child may receive less than the best education. Sam recently
decided to get involved with his local district’s school board because of his
strong feelings.
What are the Many young adults with functional limitations and normal intelligence get
usual living married, although often somewhat later than adults without such limita-
arrangements for tions. However, fewer adults with disabilities marry than the age-matched
adults with func- nondisabled population. Most of these adults live either independently or in
tional limitations? close proximity to their families.
If mobility is a major problem, their independence hinges on public
transportation or on the possibility of obtaining adapted transportation,
such as a chair lift–equipped van. Funding for this type of vehicle is often
limited, and obtaining one frequently requires coming up with innovative
approaches to fundraising. A number of volunteer community agencies,
such as the United Cerebral Palsy Associations and the Easter Seal Society,
are interested in helping people with disabilities. These agencies, even if they
can’t provide funds themselves, usually know where to turn for help. Ob-
taining a driver’s license and a personal motor vehicle provides a large mea-
sure of independence, and anyone who is capable of accomplishing these
things ought to try very hard to do so.
What special med- There are a number of issues that are more common to people with impair-
ical considerations ments and functional limitations, although the issues are by and large the
are there for those same ones the general population faces. Good general medical care contin-
with impairments ues to be important but also may be neglected because of diYculty in Wnd-
and functional ing physicians who are willing to provide care for the adult with CP. Many
limitations? adults with CP get good care for acute problems but do not get good pre-
ventive care, such as periodic general health evaluations, Pap smears, breast
exams, and rectal exams. The best way to Wnd a physician is not to wait un-
til you are ill but to obtain the names of two to four physicians and visit their
oYces and interview them. This lets you know how comfortable the physi-
cian is with you and lets you see whether the oYce is accessible to you. Den-
tal care is also a problem for many adults with CP. Many have poor dental
hygiene and caries (“cavities”), and Wnding a dentist who has the skills and
is willing to devote the time necessary may be diYcult. Many of those with
CP also have problems with drooling, which may be treatable with medica-
tion or surgery (see Chapter 3).
Adults with impairments and functional limitations due to spasticity
must get adequate exercise to avoid stiVness. This need often conXicts with
increasingly busy lifestyles, just as a full schedule interferes with the nondis-
abled person’s ability to exercise. The same discipline is required to set up a
routine in which the individual does get exercise and stretching. If the activ-
ity is one that the person enjoys doing, such as swimming, the person is
more likely to stick with it. Many young adults give up walking by age 25, for
reasons of fatigue and ineYciency of walking, and because wheelchairs pro-
vide greater mobility and independence.
Musculoskeletal problems are very common as these young adults get
older. Cervical neck pain (especially in those with athetosis), back pain, and
pain in the weight-bearing joints (hips, knees, and ankles) can be found in a
high percentage of adults with CP, especially after age 40. Of those who are
still walking at age 40, many give it up at this point because of this pain.
Contractures of the lower extremities are also common, especially among
those who have stopped walking. Another common complaint is carpal
tunnel syndrome, a type of overuse syndrome, which develops because of
chronic, repetitive, and atypical uses of muscles or joints. This can be seen in
those who are working at computer keyboards over many hours a day, or in
those who use crutches or push manual wheelchairs over many years.
Adults with functional limitations are also vulnerable to chronic dehy-
dration as a result of decreasing, by choice, their Xuid intake to avoid diY-
culties in public toileting. This can contribute to constipation. Constipation
is a common complaint of aging adults, as well as those with functional lim-
itations. Attention should be paid to this problem by changing the diet, us-
ing stool softeners, and having bowel movements on a regular schedule. Reg-
ularity can be achieved with improved toilet accessibility in the workplace
and, sometimes, attendant help. Adequate water intake is also essential.
Sam recognizes that his disability places him at increased risk for devel-
oping arthritis in his neck, and for falling. At the same time, he argues, he is
not going to break his leg snow skiing or playing basketball, as a coworker
of equal age might. This argument has not helped Sam with the insurance
company, and he is presently without medical coverage. Because Ellen uses
a wheelchair, she Wnds it impossible to use many public bathrooms, which
are not large enough for wheelchairs to maneuver in. She Wnds the Unisex
wheelchair bathrooms best, when available, because then Sam can also enter
and help her.
Finding physicians has also been diYcult. Ellen has had an especially
diYcult time Wnding a gynecologist who will take the time to deal with her
spasticity, which is always a problem. On one occasion, she tried to tell a
new gynecologist which positioning and speculum size would work best
and found that he felt oVended. Sam has had similar problems Wnding a
dentist because of his diYculty in controlling his mouth movements. He
suggested a clamp to hold his mouth open, but several dentists ignored his
suggestions.
As adults neither Sam nor Ellen has had serious medical problems, al-
though both have to deal with chronic constipation. Sam has also had some
problems with arthritis in his neck, although it has resolved with rest, ther-
apy, and medication; so far, there hasn’t been a need for surgery. Sam and
Ellen do both worry about maintaining their current level of functioning
and remaining independent.
What are the In the 1980s, studies showed that only a small percentage (from 12 to 17 per-
prospects for cent) of adults with CP were employed. More recently, published reports
employment? have shown far more adults with CP (as high as 50 percent) achieving com-
petitive employment and independent living. People with milder involve-
ment, good family support, and proper medical treatment had the highest
rate of employment. People whose speech impairment was a major part of
their disability had lower rates of employment.
A common misperception in the general population about people with
functional limitations is that the person is retarded. This should be con-
fronted immediately with a discussion of the person’s abilities. As an ex-
ample, if the person with a functional limitation is seeing a physician who ig-
nores the person and only talks to the sponsor, the person being examined
should openly say “I have a college education. I know that I’m occasionally
hard to understand when I speak, but I can understand very well what you’re
talking about.”
Sam and Ellen were married 16 years ago, and both have continued to
work. During their adult years, they have experienced discrimination due to
their functional limitations. For both, Wnding jobs has always been diYcult.
Ellen had 54 interviews before Wnding a job as a travel agent. Sam sent out
107 resumes and received only two oVers for interviews. Many large inter-
national companies would not even consider them because of their disabili-
ties. Obtaining health, life, and disability insurance has been extremely diY-
cult. With passage of the Americans with Disabilities Act, these kinds of
diYculties have been eased signiWcantly.
Many people obtain jobs through a network of friends and professional
associations. This route is advantageous, especially for the person with a
functional limitation. Individuals with severe physical limitations but nor-
mal cognitive function may Wnd that getting a job in the private sector is al-
most impossible. These individuals should push state agencies to help set up
or Wnd jobs. Employment is an important aspect of an adult’s psychological
health. Volunteer organizations can help with special circumstances, espe-
cially when being employed prevents the person from getting assistance
from government agencies.
Sam and Ellen bought a house that was in a price range appropriate for
their income. However, the house needed to have a ramp built for Ellen’s
wheelchair, the bathroom had to be made wheelchair accessible, and the
laundry area had to be moved upstairs, all of which created signiWcant added
expenses for which there was no help available. If they were not working,
the county welfare agency would have provided wheelchair-accessible trans-
portation. However, because they were earning money, this was not avail-
able. Their income was not large enough to allow them to purchase a hand-
controlled, wheelchair-accessible van, which Ellen needs for transportation.
Assistance in buying this type of vehicle is often available through volunteer
organizations, but obtaining funds requires some initiative on the part of
the person who needs help. ModiWcations to the house may also be tax de-
ductible if the modiWcations are needed because of a person’s disability. A
tax adviser can help you determine which of these expenses can legally be
claimed for tax purposes.
Adults with Disabilities

This group, adults with disabilities, varies greatly, from those who need
assistance because of mental retardation to those who have normal cognitive
function but severe physical disabilities. This group also includes individu-
als with both severe mental and physical disabilities. By deWnition, these are
the people whose disability is severe enough to interfere with their ability to
participate in a typical societal role.
John was cared for from birth by a foster mother whose Wve older chil-
dren were all in school. Mary was a secondary school teacher and writer who
felt the need to adopt a special child. Because adoption would have removed
all state assistance, John legally remained a foster child so the family could
obtain state assistance for medical expenses and other special needs. But he
was raised as one of Mary’s own.
John started walking at age 5 with poor balance and is considered to have
moderate spastic quadriplegic CP with moderate speech impairment and a
moderate degree of mental retardation. John has an outgoing personality,
endless good spirits, and an obsessive will. His mental disability aVects
his judgment, impairs his perceptions, and causes perseverations (persistent
repetition of a word, gesture, or act). He is happy to be with his family, his
closely knit local community, and his church, and he is never moody or per-
sistently angry. In general, he has unquenchable optimism and a totally pos-
itive outlook on life.
Although John needs supervision for daily living activities, as well as di-
rection to maintain appropriate behavior, he has become a full member of
the extended family. Although he was never adopted, the state agency “for-
got” him, expecting that he would be cared for by the foster family. When
John turned 18, Mary successfully applied to become his legal guardian.
Even if he had been adopted, this step would have been necessary at age 18
if Mary was to continue to have any legal responsibility for John.
By the time John was 26, Mary had retired and was in her seventies. She
started to plan for John’s future care and arrived at a decision with the rest of
her children. When Mary died, John would be cared for by Hal, the oldest
son, who had four children of his own in grade school. At this time, there
was discussion about building several group homes for adults with disabili-
ties in the community. The family felt this might be an even better option for
John, since the people building these homes were members of the church
to which John belonged. Two homes were built, one for men and one for
women. Application was made, but the family felt the chances were very slim
that John would be chosen, because other families seemed to have a much
greater need for custodial care.
The group directing this eVort wanted this home to work, however, and
they believed things would be easier if they started with adults who were
well known in the community and who were not too diYcult for caretakers
to manage. Because of John’s good nature and community ties, he was cho-
sen. After the choice was made there was only one month until moving day.
During the transition John stayed at his new home but every other weekend
came back home to stay for the night. Since the new home was only several
blocks from his old one, it was easy for John to come home when any spe-
cial occasions such as a birthday occurred. John quickly adapted to his new
environment and was happy.
Things did not go well for Mary. Her friends would typically greet her
with statements like, “How wonderful that you’re free now, with John in
the group home,” and would not hear her sadness. Although John’s father
seemed to welcome the new freedom to come and go with friends without
looking out for John, for Mary things were very diVerent. She now awak-
ened in the morning without anyone to care for, for the Wrst time since her
oldest son was born 46 years before. Mary had enjoyed caring for John and
had not seen him as a burden, but instead appreciated his humor and lively
engagement as a conversational partner. With John gone and her husband
focusing more on his hobbies, Mary became depressed. After several ses-
sions with a psychologist, Mary learned that the kind of sadness she experi-
enced when John moved was a natural consequence of loss. It was also a rea-
sonable cause for grieving, even if others around her could not appreciate it.
With time, Mary found peace in her new life.
What are the Care and housing arrangements for the disabled adult vary greatly from one
usual living community to another. The environment of a small group home, with full-
arrangements for time house parents, is probably ideal, although it is not available in many
adults with communities. There are some adults who require too much care for the
disabilities? usual small group home. Larger group homes with staV rotating by shifts
are another alternative that works well in some communities. Adult foster
homes are yet another possibility. Options that many parents Wnd least de-
sirable are nursing homes or state hospitals. Although these are not ideal en-
vironments, there may be no other alternative for some adults requiring very
intensive or skilled care. These options should not be immediately dismissed
as poor choices, since there are many nursing homes and state hospitals that
are well run and staVed by very competent and caring personnel.
Parents of adults should Wnd out what is available in their community
long before they expect to use these facilities. If adequate facilities are not
available, parents may want to consider forming a church or community
group and look into establishing group homes. This is how most good small
group homes are developed. In many ways the transition from parental
home care to outside care for the adult with a disability should follow a pat-
tern similar to the normal child who eventually leaves the parental home
to live independently. Many adults with disabilities continue to live with
their families until circumstances necessitate a change in living arrangements.
Planning for the time when a change may become necessary is extremely im-
portant for the adult with a disability as well as for the family. Planning seri-
ously and over a long time for any change can make the transition much eas-
ier for everyone when the change occurs. Making a change in an emergency
situation, such as when there is serious illness or death of the principal care-
taker, can be traumatic for everyone involved.
What special med- The adult with a disability continues to have the same medical problems that
ical problems do were present earlier, if they haven’t yet been adequately addressed. Pain from
adults with dis- dislocated hips or scoliosis, for example, may continue to be present in the
abilities have? adult if they have not been fully corrected in childhood.
As was mentioned for those with functional limitations, this population
also lacks adequate preventive medical and dental care. Hearing and vision
impairments, epilepsy, and gastroesophageal reXux are fairly common in
this population (these problems are discussed in Chapter 3) and may worsen
in the adult even if they were adequately dealt with in childhood.
The young adult with disability is also prone to some special medical
problems. One set of problems is urinar y tract infections and inconti-
nence. Infections are often associated with poor perineal hygiene and/or
the use of a urinary collecting device or Foley catheter. Bladder incontinence
is a particular problem among the nonambulatory (those who spend most of
the day in a wheelchair or bed) and can be improved by following a regular
toileting schedule. Incontinence often occurs late in the day after not void-
ing all day, and frequently during transfer activities. As mentioned earlier in
this chapter, deliberate restriction of Xuids to avoid this problem often leads
to constipation.
As discussed in Chapter 3, osteopenia (low bone density) and osteo-
porosis are a signiWcant problem for many adolescents with CP. This prob-
lem only gets worse as they become adults, especially because many of them
give up walking as they get older. Fractures after minimal trauma, or after a
fall in those who are ambulatory, may be fairly common. Those who have
had one such fracture are at an even greater risk for recurrence. Osteoporo-
sis is a concern for the elderly population at large, especially postmenopausal
women. In the disabled population, this problem is present among both
men and women, and at much younger ages than in the rest of the popula-
tion. Consideration needs to be given to early evaluation of bone density
(usually with a DXA scan) and to possible treatment with medications (such
as vitamin D and/or bisphosphonates).
Postural back pain is often associated with inadequate wheelchair equip-
ment. Crutches, canes, braces, and wheelchairs need to be reevaluated peri-
odically to be sure they are still appropriate for the individual and still Wt his
or her needs.
The Young Adult with Cerebral Palsy

Some of the problems people with cerebral palsy have are speciWcally re-
lated to the person’s age. One common problem that develops in this group
is loss of motivation and desire to pursue goals, when the person is no longer
in the school system. Some mentally high-functioning but severely physi-
cally involved individuals become disheartened when they can’t go to col-
lege or Wnd employment. For those who have been able to attend college,
facing unemployment related to their disability is profoundly disturbing

and can seriously aVect their motivation.
Some of these challenges are well described by Josh and by his mother,
who submitted the following about his life during adolescence and young
adulthood.
a young man’s view

I’m Josh. I’m 24 years old and I have cerebral palsy. I have been living on my own for
the past three years. Now that may not seem like much, but when I was born they
didn’t know if I was going to survive. I’m a Wghter. I’ve had twelve surgeries and
spent the Wrst Wve years of my life seeing one doctor after another and physical ther-
apists for hours at a time. It’s been a long and winding road for me to get where I am,
but I think I am going in the right direction. I’ve decided to tell you about the time
of my life between 13 and now. It was a very traumatic and changing time for me. I
guess the best way to start this narrative is with one word, nothing. Nothing is what
I did between the ages of 13 and 18. I mean I went to school, graduated with a 2.96
gpa, and the only reason it was that high was because of my test-taking abilities. I
never did any homework or studied. I got the grades that I got by paying attention
in class. Now that I look back on it I think it was a mistake. If I had done my home-
work, I would have graduated on the honor roll.
The events that have gotten me where I am started before I graduated. High
school was mostly about being pushed around and called names by the other kids,
dodging being thrown into lockers, and being called “tard.” But my freshman year of
high school I had a teacher for World Civ by the name of George M. Mr. M is a very
unique teacher. He has since become the principal of that high school. He made me
want to be in his class. I will never forget the day I decided I wanted to be a teacher.
It was the day before my very last orthopedic surgery. Mr. M decided that before he
would start class we would have a party for me. So we’re sitting there talking and
eating snacks and I said to myself, “This is what I want to do. I want to make other
people feel the same way I do right now.” I can say that is the exact moment that I
wanted to be a teacher.
Let’s Xash forward to my Wrst year of college. I had just gotten accepted to a Wve
year program that would end with me having a masters in education. I wasn’t ready
for college. I decided I’d rather smoke pot than go to class. So I failed out. Then I
thought that I wanted to be an artist so I applied to the School of Visual Arts for pho-
tography. I was accepted. When school started I became very depressed. There were
days when I didn’t get out of bed until Wve in the afternoon. I didn’t want to do any-
thing. So needless to say, after two semesters I failed out again. That was the end of
my college days. My parents brought me home. I continued to be depressed and
didn’t know what to do with my life.
When I got home that’s when it got hard. My parents and I were not getting
along, I wasn’t doing anything, and I was just wasting away. At Wrst I tried to work
at a convenience store, but I wasn’t able to stock the shelves or clean fast enough.
Then I worked as a computer consultant, and I kept that job for a total of Wve months
when they told me they wanted someone with more graphic design abilities. I think
that was just a nice way of Wring me. My parents decided that I had to do something.
So they insisted that I enroll in the local community college and I did stay there and
received computer certiWcation. My mother drove me to and from school every day
and I did complete that certiWcation. I was somewhat proud. But I still had not be-
come my dream of being a teacher.
That was when my parents and I decided that I couldn’t live with them anymore.
I decided to move into Center City. I come from a very fortunate family and my par-
ents were nice enough to help me with my rent. They have been helping me for the
past 3 years. It seemed that the only way I was going to be able to Wnd a job in such
a big city was with some help, so I went to OVR, the OYce of Vocational Rehab.
Through OVR I was introduced to Liberty Resources.
Liberty Resources is a CIL (Center for Independent Living). At Liberty Re-
sources, adults with physical and neurological disabilities are given opportunities
that would otherwise be diYcult to get—speciWcally job training. A very large por-
tion of Liberty Resources is called the Workplace Academy. It is a group of classes
specializing in workplace skills and etiquette. Through OVR I was enrolled in a few
of these classes. While I was waiting for these classes to start I went in and talked to
the director about what I can do to keep myself busy until I start my classes. She and
I decided that I could do some volunteer work. I decided to ask her if I could teach.
I explained to her that I have computer certiWcation and that I would have no
problem helping teach the computer classes they oVered there. I’ve been volunteer-
ing at Liberty for the past seven months. There has been talk of a permanent teacher’s
aide position.
It may have taken me a while, and I’ve taken many diVerent roads, but I think I
am on the verge of reaching my goal of being a teacher and fulWlling my ambitions.
I can only tell you that I think I’ve learned that it is important to take a risk in life. I
have been fortunate to be exposed to many diVerent people and things in my life. I
guess you can say we grow when we grow up. I now work and help many people with
many challenging disabilities. Sometimes I still get angry with people for not seem-
ing to accept my cerebral palsy, but I now realize that is their issue, not mine. Again,
I say take a risk and reach for your dreams. I’m still reaching.
a mother’s view
When Josh started middle school at the age of thirteen, he was full of hope and so
were we. He was totally mainstreamed, which we had fought for because we felt he
belonged in that situation. He was smart, intelligent, and very eager to learn. I
should say that throughout his entire school years he was thrown in and out of spe-
cial ed, mainly because of behavior and insubordination. When he liked a subject, his
star shone brightly. When he liked a teacher, he did the same. He was a very sociable
guy and loved to talk . . . and debate. He was small for his size, so he was constantly
being challenged by bigger boys. He was a bully’s dream. Because of his limp and his
somewhat bent over appearance, he was constantly the target and butt end of jokes
and taunts. He came home every day after school either crying or complaining about
something or someone. His grades began to slip and he stopped doing his work. All
he wanted was to be accepted by his peers and it was a very sad time for him and us.
His usual gregarious personality became sullen, he never smiled any more, and we
became worried about him. He was seeing a psychologist, which took the pressure
oV of us, but to no avail. Right before his thirteenth birthday and bar mitzvah, he had
an emotional breakdown and was placed at Child Guidance Hospital for thirty days.
That time caused much stress and Wghting in our lives, for Joshua, his parents and
siblings. After coming out of Child Guidance, he went back to middle school and
again was taunted by the children. He was tripped in gym class, broke his knee, and
needed to be in a cast for eight weeks. The day his cast came oV, he was tripped again
and that was the last straw. I went to his school with my “dukes up” prepared for
a big Wght. We got no cooperation from the public school and my husband and I
decided to take him out of public middle school. He was in the eighth grade. We
searched for all types of schools and Wnally made the decision to send him to a private
school about twenty minutes away. The only compromise we had to make is that they
insisted he repeat the seventh grade as he really hadn’t done much work. We agreed.
He really liked the school and started out doing very well. He was being academically
challenged, but he was still acting out because he so desperately wanted to be ac-
cepted. But he was liked at this school and we loved their philosophy. He was treated
kindly and with respect and accepted for his diVerences. He was even on the school
basketball team. He suited up and played sometimes. It was a great boost to his
morale. He made friends and Xourished. He was happy. And so were we.
Then he decided that he wanted to go to a public high school and I feel it was the
beginning of a great depression. He barely did any work the entire four years of high
school. If he liked the teacher, he was Wne. He battled kids every day who called him
names and taunted him. He was thrown into lockers, bullied and at times would act
out in school. He did have some teachers who protected him; a few students too.
After graduating he tried college, but failed out because of not going to class. We
brought him home and he signed up for computer certiWcation. Loving computers,
he succeeded and Xourished. He had several jobs, but they didn’t last because he had
a problem with authority. Finally his cousin found out about a place called Liberty
Resources, which is a nonproWt organization that helps people with disabilities func-
tion in the real world. It was a wonderful experience for Josh, as he loved the people
there and they were willing to give him a chance. He took more computer classes and
also classes to help him look for, get, and keep a job. At this point, he is teaching com-
puters to other disabled adults and loves his role as a teacher’s assistant. He is wait-
ing to hear whether they will hire him permanently. A great lesson was learned here.
If you persist and try hard, you can turn your life around and do something produc-
tive with your life, no matter what . . . we are very proud of the wonderful job and
eVort our son is providing for himself and others. Growing up for anyone has its
bumps and peaks and valleys, but growing up challenged can also provide the person
with a desire to succeed. Our son, Joshua has done just that.
What can be done When an adult is no longer motivated, it is important to determine if he or

for the person who she is clinically depressed. Depression can aVect the young adult just like
is no longer anyone else, and should be treated with psychological counseling and, when
motivated? appropriate, medication. The person who loses interest in his normal activ-
ities, is not interested in interpersonal relationships, and becomes with-
drawn should not be ignored for long periods of time. These bouts of de-
pression are easier to treat if they are addressed early by referral to a clinical
social worker, psychologist, or psychiatrist.
How can the per- Although current laws are designed to protect individuals with disabilities
son with a disabil- from discrimination, in reality there are both physical and psychological bar-
ity overcome riers to overcome. In the past, many employers made their workplaces phys-
barriers to ically accessible only when economically motivated to do so. However,
employment? providing physical access in the workplace is now legally required by the
Americans with Disability Act.
Typically there is a good deal more acceptance of people with disabilities
in the educational community (students as well as teachers) than in the free
market. Certainly, individuals who have attained a college education, and
particularly those with a graduate degree, have less diYculty Wnding a job
than those without degrees.
The Wrst step in dealing with barriers to employment is understanding

that they exist and anticipating them. Networking with known contacts
when looking for employment often yields better results than trying to en-
ter the open market where no one knows you. This style of job hunting is
usually the most fruitful style for anyone, regardless of education, skills, or
other capabilities: if you have access to a network in the area in which you
would like to work, use it.
What problems There are really two groups, broadly speaking, within this category. First is
are encountered by the group with severe physical involvement but adequate cognitive func-
people with dis- tion. It is important for these people to have a say in their life plans and goals.
abilities who have For this group of people, a major problem in gaining maximum indepen-
never functioned dence is the need for attendant care to help them in activities of daily living.
independently? Parents need to be very careful not to impose their desires unilaterally, just
because the person can’t physically live independently. It is also often very
diYcult for them to obtain Wnancial backing. Limited resources can be a
source of frustration for the person and his or her family, because there are
many ways to make environments less restrictive if more resources were
available.
This diYcult fact of life needs to be addressed politically. It is necessary to
educate local and national politicians, as well as to lobby for the needs of in-
dividuals with disabilities. Again, it is important to express your needs to
volunteer organizations like the United Cerebral Palsy Associations and the
Easter Seal Society, whose main purpose is to provide help to individuals
with disabilities.
Social interactions have always been diYcult for both Sam and Ellen.
Sam has had problems because of his speech diYculty. Ellen was pushed at
a young age to play by herself, and she learned to be very content alone.
Social interactions were especially diYcult during junior and senior high
school. Both Sam and Ellen had the feeling that nondisabled teenagers did
not want to be caught dead with a “cripple” and as a consequence avoided
them. Even now, social relationships are diYcult because co-workers and
neighbors Wnd Sam’s communication problem and Ellen’s wheelchair just
too much trouble to deal with. Others frequently do not include them in so-
cial activities. This diYculty with inclusion can be overcome by focusing on
developing deeper friendships with a few, as opposed to superWcial relation-
ships with many people.
The other group is composed of those who are disabled to the point of
needing total custodial care. It is important for parents or other caretakers to
have plans for moving such individuals to a structured environment at some
point, where adequate care can be given. This should not be seen as a failure
on the parent’s part but as one aspect of the normal process of maturing and
making the transition to adult life. Most of these children will outlive their
parents. The most beneWcial contribution a parent can make is to formulate
good long-term plans. This does not mean that the children are being “put
away,” any more than sending another child oV to college is “putting them
away.” These children usually come home to visit on vacations, weekends,
and holidays, just like children who are away at college.
Often group homes in the local community provide a more socially stim-
ulating environment than living at home with aging parents. This is not to
say there haven’t been situations in which severely involved children who
were doing well at home (because of the excellent care the parents were pro-
viding) deteriorated when they were placed in a custodial facility. But it may
be very hard for parents to accept the fact that the time has come when their
child will be better oV living away from home. Focusing on the years when
they were able to provide care may be helpful for these parents, who may
also beneWt from psychological counseling.
What sexual There needs to be a suYcient discussion of birth control with those who
issues need to be might be sexually active. Often, even cognitively normal but physically in-
addressed in volved men and women have a limited understanding of birth control is-
young adulthood? sues, primarily because they have less opportunity to learn. The general
population contributes to this by believing erroneously that the individual
with a disability lacks interest in sexual activity. This bias may even be seen
within the medical profession. The adult with a disability should not be
embarrassed to bring up this issue with caregivers and certainly with his or
her doctor.
An example of this problem is illustrated by the comment of a young
adult man who was asked how he managed to deal psychologically with the
need for therapy and bracing to allow for his diYculty in walking. He replied
that he spent much more time and concern thinking about sex as a teenager
than he did about how he was walking; however, the doctors and therapists
only wanted to talk about his walking. Birth control issues can be especially
diYcult for people with mental retardation, especially for females who may
be taken advantage of because of their lack of judgment or their naiveté.
There is frequently a desire to give adults as much freedom in their commu-
nity as possible, which may bring with it the risk of unwanted or unprepared-
for sexual activity. This is a diYcult moral and social issue that the adult’s
guardians must carefully consider (see Chapter 3).
To whom does the The child with a disability usually has medical care available to him. The
adult turn with same specialists may not treat adults, however. While it is true that growing
medical problems children undergo many changes and thus need close medical monitoring,
related to his CP? the adult must have specialists available, as well. Sadly, many people with
disabilities endure physical problems that may in fact be treatable, but lack
of the appropriate medical or surgical care makes treatment unavailable.
Finding a good and trusted general physician is critical to good health, and
when things do not seem quite right, do not hesitate to consult him.
Some people struggle through life with correctable foot deformities and
only at retirement Wnally decide to see if something can be done to im-
prove the situation. The person needs to Wnd an informed and interested
orthopedist who is familiar with that kind of problem. Many individuals
with disabilities get used to putting up with pain and discomfort and in
fact are counseled “just to live with” their problems. Certainly, there is a limit
to what modern medicine can do. However, new discoveries are being made
all the time, and all eVorts, within reason, should be made to relieve any
discomfort.
What speciWc Adequate Xuid intake is necessary to maintain good health. Young women
problems might (and less frequently young men) sometimes restrict their Xuid intake so that
the young adult they do not have to deal with toileting problems. This is a very dangerous
female have? habit, because it can contribute to chronic constipation and lead to kidney
failure.
Young women who are interested in childbearing are concerned with the
impact their disability may have. There is no known reason why a woman
with cerebral palsy should not have her own children (see Chapter 3). It’s a
good idea to consult a genetic counselor before conceiving a child if there
are any concerns about the cause of their disability and the possibility that
it may be genetic. Most women, even with signiWcant spasticity, can have a
vaginal delivery, although a cesarean delivery may be necessary for a woman
with signiWcant hip deformities. Even a completely paralyzed woman may
have a vaginal delivery, although her blood pressure needs to be closely mon-
itored to avoid stroke, which can occur if the blood pressure rises extremely
rapidly to high levels.
What are the The anxiety that all new parents have may be magniWed for the parent with
stresses of child- CP, but this usually subsides as the parent Wnds special ways to adapt baby
rearing for the care to Wt his or her abilities. Being a parent is a great equalizer. One man
parent with cere- whose disability required him to use a wheelchair said that caring for his in-
bral palsy? fant son made him feel like a full person because his son did not care that it
was diYcult for him to get out of bed in the middle of the night. When the
baby was hungry, he cried until he was fed.
The responsibility of parenting can add signiWcantly to the diYculties of
daily living, whether a person is disabled or not. Having children should al-
ways involve advance planning, with consideration given to the cost and
eVort involved.
The Person with Cerebral Palsy at Midlife

For most of the population, the most signiWcant aspect of midlife is ex-
periencing and coming to terms with the physical problems associated with
aging. For the person with cerebral palsy, the eVects of aging are noticeable
at a younger age. Adults in their twenties and thirties start to notice that they
are getting stiVer and weaker, particularly if they have not stayed active and
done their stretching exercises. Many adults with CP also commonly re-
port signiWcant physical fatigue, associated with bodily pain, deterioration
of functional skills, and low life satisfaction. Although the normal process of
aging tends to come on prematurely for the person with CP, otherwise it is
no diVerent from the process for individuals without cerebral palsy. Aging
does not directly change the level or degree of spasticity; however, the slowly
increasing stiVness and weakness contributes to decreased function.
Adults in the general population must make an ongoing eVort to coun-
teract the eVects of aging, but again, this is substantially the same eVort that
individuals with cerebral palsy must make, beginning at a slightly younger
age. Good exercise habits should be learned early, but it is never too late to
start. Water activities such as swimming or stretching in warm water are of-
ten the easiest and best-tolerated exercises for people with spasticity. Strength
training for adolescents and young adults with CP has been shown to im-
prove muscle strength and walking ability without increasing spasticity. Par-
ticipants in such programs also report psychological beneWts such as a feel-
ing of increased well-being.
Do people get To some extent getting weaker is a normal part of aging, but it happens at a
weaker as they get diVerent rate and level for the person with CP. For adults with a disability
older? who often push their bodies to the maximum for activities of daily living, the
muscles may wear out prematurely from overuse. This doesn’t mean that
the muscle stops working; rather, there may be increasing weakness as the
muscle is continually stressed. This condition has been identiWed in people
who have had polio, but probably also exists to some extent with cerebral
palsy. The main treatment consists of modifying activity—for example, by
using power wheelchairs for long distances, such as shopping at the mall.
As noted above, strength training, especially for the lower limbs, may also
be of beneWt in improving strength and walking ability without increasing
spasticity.
What are overuse Overuse syndromes are conditions in which pain or disability results from
syndromes? repetitive activity. The most common problem of this kind in the general
population is carpal tunnel syndrome, in which there is irritation of a nerve
in the wrist caused by repeated wrist motion such as typing. People who use
crutches or push manual wheelchairs are at high risk for developing carpal
tunnel syndrome. The symptoms include numbness in the thumb and index
and long Wngers. The sensation can cause individuals to awaken from sleep
and often is relieved by hanging the hand over the edge of the bed.
The initial treatment for carpal tunnel syndrome is the use of anti-
inXammatory medication such as salicylic acid (aspirin) or ibuprofen (Advil)
and a splint worn at night. If this does not give relief, a very simple opera-
tion to relieve the pressure on the nerve is usually done under local anesthe-
sia, often on an outpatient basis. The results are usually quite satisfactory.
Tendinitis of the wrist is another condition that commonly results from
using crutches and pushing manual wheelchairs. It is usually treated with
anti-inXammatory medication and splinting. If this treatment does not pro-
vide relief, a minor surgical release may be necessary.
Are individuals Adults with two conditions related to cerebral palsy are at signiWcantly
with cerebral palsy higher risk for developing arthritis: the person who has athetosis and the
more likely to have person who has a subluxated or dislocated hip. The person with athetoid
arthritis? cerebral palsy has frequent movements of the neck, which cause increased
wear and early arthritis. Despite this, many adults with athetosis don’t de-
velop neck problems.
Sometimes arthritis begins when the person is in his twenties but more
commonly it occurs in the 30- to 50-year age range. Usually it is noticed as
neck pain, but it can also be associated with arm or shoulder pain. The pri-
mary treatment for arthritis in the neck caused by athetosis is wearing a soft
neck collar to try to decrease the movement slightly. Muscle relaxants (such
as valium) are sometimes helpful in decreasing movement, too, but most
muscle relaxants can cause drowsiness, which may interfere with an individ-
ual’s lifestyle.
Taking anti-inXammatory medications is helpful in decreasing the sore-
ness caused by arthritis. The use of such physical therapy approaches as trac-
tion, heat, massage, ultrasound, and electrical stimulation may also help.
Often, over a period of several weeks to two months this discomfort settles
down and the pain goes away. Rarely does the arthritis become severe enough
to necessitate a cervical spinal fusion.
The other cause of early arthritis and pain is hip dislocation and subluxa-
tion. This problem can now be completely prevented by proper treatment in
childhood. Many adults weren’t properly treated for this problem in child-
hood, however, because they grew up at a time when there was not a good
understanding of how to treat or prevent it. If the aVected hips become
painful, decreasing activity and using anti-inXammatory medications is the
Wrst line of treatment, but painful hips usually require surgery. For the alert
and walking patient, a total hip replacement usually gives the best result, al-
though this operation doesn’t always work. Removing the arthritic ball of
the hip joint is another option, but often this does not completely remove
the pain, and it typically leaves the limb very short, which may make sitting
diYcult.
The Older Person with CP

The age-associated problems of stiVness and arthritis tend to continue as
a person gets older. This typically is a time, too, when it becomes increas-
ingly diYcult to continue certain activities, especially walking. The older

adult should be encouraged to reassess and make necessary adaptations. A
change in lifestyle may give rise to depression, which, if it continues, re-
quires professional counseling.
Friends and relatives may make comments such as “Don’t give up,” “Keep
Wghting,” or “If you don’t keep going, you’ll never walk again,” which, al-
though well intended, demonstrate insensitivity and do little to boost the
spirits. Whenever possible, these types of comments should be addressed di-
rectly by the person with CP by explaining that slowing down is a known
medical part of aging in any person, although it’s slightly diVerent in mag-
nitude for the person with CP. Society doesn’t expect the 20-year-old,
40-year-old, and 80-year-old to each have the same endurance and ambulat-
ing abilities; so we need to allow the same for the maturing person with cere-
bral palsy.
A person needs to Wnd a balance between overdoing and underdoing
activity. Usually the person who has the best concept of the right level of
activity is the person with the disability, and this person must learn to tell
other people gently that he or she is managing the problem with medical
supervision.
How the
Health
Care
System
Works
9 ♦ W H E N P A R E N T S seek professional help in caring for their

child with signiWcant long-term disabilities secondary to cerebral palsy,
they will encounter several diVerent systems. One of these, the health care
system, exists to provide for the physical and psychological needs of the
child with cerebral palsy, and to address problems, whether these problems
are acute or ongoing. Dental care, nutritional support, immunizations, and
surgical procedures to maximize function are all provided by the health care
system.
Two other professional systems for supporting the child with signiWcant
long-term disabilities are the educational system and the legal system. The
function of the educational system is to teach the child to use his cognitive
abilities as fully as possible. Legal, social, and community service systems
help families to manage the day-to-day Wnancial and emotional needs of
the child and the rest of the family. These two systems, which interact with
each other and with the health care system, are discussed in chapters 11
and 12. Financial aspects of health care, such as insurance, are discussed in
Chapter 10.
In the Wrst part of this chapter, we describe the various components of
the health care system and how they work. The second part of the chapter
describes the various health care providers whom you and your child may
encounter.
How many and Many families with children who have multiple disabilities Wnd it diYcult to
what kinds of doc- determine how much and what kind of health care is right for their child. As
tors does my child it turns out, some children receive insuYcient health care while other fami-
need to see? lies are burdened with care for the child that is excessive or redundant. In the
latter case, taking the child to see specialists and trying to keep up with all
their recommendations can become a full-time job. There was one family
whose 2-year-old child over time developed ongoing relationships and ap-
pointments with 24 health care providers. This is clearly excessive, and yet
for a parent it is sometimes diYcult to know which health care services pro-
vide exactly what they need.
230 ♦ how the health care system works
What kind of doc- First and foremost the child needs a primary care physician. This provider,
tor is best for my who may be a physician (generally a pediatrician or a family practitioner),
child? nurse practitioner, or a physician assistant, will direct the family’s use of
other health care specialists whose services are needed by the child. For
children with complicated medical problems, a pediatrician is the preferred
health care coordinator or director, since the pediatrician is likely to have had
specialized training as well as experience in managing these problems. It is
this primary care provider who will provide a “medical home” to the dis-
abled child.
What is a medical The medical home is an approach to providing care that is accessible, con-
home? tinuous, comprehensive, family centered, compassionate, culturally eVec-
tive, and coordinated. There are many advantages to having such a “medical
home.” Children with a medical home are less likely to experience delayed or
foregone care, less likely to have unmet health care needs, and less likely to
have unmet needs for family support than children without a medical home.
Families with a medical home have signiWcantly fewer parents’ missed work-
days and hospitalizations for the children.
In addition to coordinating chronic and acute medical needs, the primary
care provider provides preventive care, including immunizations. Having a
regular source of care was found to be the most important factor associated
with receiving preventive care services.
What do I do if Not all primary care providers are familiar with the health care needs of
my primary care the child with cerebral palsy. They may be slow to make referrals to appro-
doctor is unfamil- priate specialists, for example. When this occurs, it may be diYcult for the
iar with CP? family to know how to proceed. One point to remember is that as your
child’s parents, you are her or his best advocate. Never fail to make your ob-
servations and recommendations known to the physician. If you believe that
a more timely referral to a specialist is in order, tell your child’s physician.
You and the physician must forge a collaborative relationship on your child’s
behalf, and open, direct communication is important to successful health
care management.
How can I Whenever you begin a new relationship with a physician, take with you on
improve commu- the Wrst appointment the names and addresses of the other specialists in-
nications among volved in your child’s care. At each visit, ask that copies of all relevant dicta-
my child’s health tions be sent to the specialists you designate.
care providers? Due to HIPAA regulations, such requests must be put in writing and
signed by you. In your request, include the following information: your
child’s name, birth date, and address; parents’ names and address(es); a
statement indicating that you want information from today’s visit to be sent
to “so-and-so,” with the names and addresses of the person or persons. Most
facilities have their own Release of Information Authorization forms for
how the health care system works ♦ 231
your use, but anticipating this need and bringing with you the names and
addresses of the appropriate physicians and others who should receive this
information will make it easier to Wll out completely.
You also have a right to obtain a copy of the records for yourself. You
will, however, need to put that request in writing, too; add your name to
the list of people you want to receive records. Be aware that there may be a
fee attached to all these requests. Bring copies of all recent records in your
possession each time you visit a specialist. The specialist needs to know
what’s going on, and by sharing these records, you will help to enhance
communication.
How can I make Some children with cerebral palsy have a relationship with a diVerent med-
the best use of ical specialist for each body system, as well as relationships with a variety
information from of other professionals such as physical therapists, occupational therapists,
my child’s doctors? nurses, and social workers. For a child to beneWt from the evaluations of
these various health care professionals, all of the information they generate
must be coordinated. This serves the dual purpose of keeping all of the
child’s medical caregivers informed about the child’s condition and progress
and preventing redundancy in care (for example, the unknowing repetition
of expensive and sometimes painful diagnostic tests).
As noted above, the parent must make certain that information from each
visit with a specialist is sent to the primary care provider (PCP) and to other
specialists by way of the medical records. The PCP will help the parent un-
derstand the Wndings of the other specialists, and these specialists’ reports
will assist the PCP in managing the child’s care.
Another helpful professional is a case manager, who may be employed by
an insurance company or a state agency. Case managers can help coordinate
your access to care, help you understand the recommendations of various
specialists, and help provide direction for the care of your child.
What is a patient Because children with complex medical problems have so many health pro-
case manager? fessionals involved in their care, the concept of a patient case manager (also
called a patient care manager) has evolved. Most case managers are nurses
or social workers who provide excellent support to the family and assist in
coordinating the child’s many health care providers. The case manager may
make recommendations regarding speciWc health care specialists.
Government agencies or specialty clinics may assign a case manager to a
child, and such a person will generally have the family’s and the patient’s best
interests at heart. But insurance companies have also begun to employ pa-
tient case managers, and the primary goal of case managers hired by insur-
ance companies is to avoid duplication and the redundant use of resources.
In this situation, parents will need to be especially strong advocates for their
child (see Chapter 12, “Being an Advocate for Your Child,” as well as “Man-
aging the System” in Part 2).
What if I do not If you are living just above the poverty level, you may be ineligible for
receive public many social service programs. If you have no medical insurance for your
assistance, do not child, you may have diYculty Wnding a doctor to see your child for regular
have access to a care. Contact your local Department of Public Health, as many states op-
case manager, and erate primary care health clinics for just such families. In addition, many
do not meet eligi- states have a program known as CHIP or SCHIP which will provide med-
bility criteria for ical insurance coverage for children who are not eligible for Medicaid and
various programs are uninsured.
of public support? Parents who are in a diYcult Wnancial situation often take their acutely
ill child to an emergency room. Each time a child comes to the emergency
department, she may be seen by a diVerent physician, who most likely will
be unaware of the child’s speciWc health issues and therefore may not be
able to provide the best care for the child. A series of visits to the emergency
room is not a good way to provide medical care for any child, in part because
it makes it impossible to coordinate care. Instead of relying on the emer-
gency room, parents should Wnd out where the local public health clinics
are located.
State and local agencies such as the public health, social services, and
health and social services departments can provide this information. Call the
clinic to Wnd out who manages the clinic and whether you would be required
to pay for any service (there may or may not be fees associated with the ser-
vice). It’s very possible that you and your child could receive primary health
care through a clinic program.
What can I expect The primary care provider may be a doctor, a physician assistant, or a nurse
my child’s primary practitioner. The primary care provider (PCP) should get to know your
care provider to child and your family, so that he or she is able to integrate the child’s care
do? with the family’s needs. He or she should speciWcally be interested in ob-
serving the growth and development of your child and making certain that
routine physicals are performed and immunizations are up to date. Usual
childhood illnesses such as viral illnesses, ear infections, and rashes should all
be treated by the primary provider. Questions about speciWc problems
should also be addressed Wrst to the primary care provider. If your child has
an illness that is very rare or very complex, the primary care provider may
choose to consult with other specialists.
What should I do Children with multiple or complex medical problems can be a challenge for
if my child’s pri- a primary care provider (PCP), who is often under stress because he sees
mary provider is many patients and may have very limited time. Providing health care for
uncomfortable your child should be a cooperative eVort, in which both the family and the
with my child’s PCP share what they have learned about the child, and the PCP continues
condition? to support the family and help them sort out complex and confusing issues.
If the PCP is not willing to take the time to help the child or appears intim-
idated in dealing with the child who has a disability, it may be necessary to
Wnd another provider with whom you and your child can develop good
rapport.
Who should be my Family physicians have medical training that includes children and adults,
child’s primary though usually their experience with children, especially children with dis-
care provider—a abilities, is limited. The advantage of the family physician is that he or she
pediatrician, a will have a broader view, one that includes all the members of the family. In
family physician, this way, a family doctor may be more helpful to parents, because he or she
a physician assis- can incorporate and deal with general family dynamics and can monitor the
tant, or nurse eVect of the disability on the diVerent members of the family, especially the
practitioner? parents. In addition, the family physician will be able to continue as primary
care doctor for the disabled child as he or she grows to adulthood, whereas
many pediatricians stop seeing patients after a certain age (often, but not al-
ways, at age 21).
The advantage the pediatrician brings is more specialized training and ex-
perience in the problems of children, and especially, more training and ex-
perience in the problems of children with disabilities. If the family develops
a comfortable relationship with the pediatrician, one that allows for free and
comprehensive exchange of information, then this is the person who ought
to provide primary care for your child.
There are also physicians trained and certiWed in both pediatrics and in-
ternal medicine (called Med-Peds training), who combine the advantages of
the pediatrician and the family physician. Their training in pediatrics is far
more extensive than that of the family physician, and they have an advantage
over the pediatrician in that they can treat the entire family and continue to
treat the disabled child into adulthood.
There are also nurse practitioners and physician’s assistants (PAs) who may
work with any one of these physicians as part of their practice and can func-
tion as the primary care provider for your child. These nurses and PAs may
also specialize in the care of children, and they often have a bit more time
than the physician to answer questions and help provide training around
procedures or speciWc care techniques.
In the end, parents have to Wnd the physician or practice that best meets
their needs. They must balance the medical knowledge and skills that the
nurse or doctor brings, with the willingness of the doctor or nurse or PA to
spend the extra time that is needed in providing care to the disabled child
and answering the family’s questions.
How often does my This depends on the problems and the nature of the child’s disability. As a
child need to see minimum, your child should be seen by his or her primary provider at least
the primary care as often as the schedule recommended by the American Academy of Pedi-
provider? atrics for well child care. It is very important for children with disabilities to
have a complete routine physical examination periodically, and not to ignore
check-up visits. Immunizations are often delayed and common childhood
problems such as hernias and undescended testicles may be missed in chil-

dren who visit the physician’s oYce for acute problems but never undergo a
full physical examination.
Which specialists The newborn intensive care nursery is usually managed by a neonatologist,
does my newborn who is a pediatrician specializing in the care of ill newborn children. These
need? specialists generally care for the infant with special needs until the infant
leaves the intensive care nursery and goes home. They are the primary at-
tending physicians during this period and consult other specialists as needed.
Upon discharge, the neonatologist generally transfers care to a primary
care physician of the parent’s choice in the community, although the neona-
tologist may also see the infant after discharge to follow up on any out-
standing medical problems. Neonatologists are generally not involved in the
child’s care after the child reaches the age of 1 or 2.
When Wrst dis- When the child is discharged you should follow up with your primary care
charged from the provider. If there are speciWc problems that were identiWed and evaluated in
hospital, what the intensive care nursery, such as breathing problems from prematurity,
physician does my your child may need to be followed up by other physicians, as well. As your
child need to see? child grows and his or her needs change, referrals to other health care spe-
cialists may be needed. As noted earlier, the PCP and the family need to work
together in making decisions about calling in specialists.
Who should check If the child was in intensive care as a newborn and exposed to oxygen, as
my child’s eyes, many premature babies are, his or her eyes should be checked by an oph-
and how often? thalmologist before discharge to home. For the infant who has no such his-
tory, assessing a child’s vision is part of a routine physical examination per-
formed by the primary physician. It may be diYcult to get young children
to cooperate during an eye examination, especially children who have spas-
ticity or a variety of disabilities. If the extent of the child’s visual abilities can-
not be conclusively determined by the physical exam, then your child may
need to visit an ophthalmologist or a neurology specialist to determine
whether using more sophisticated vision tests would be helpful.
Follow-up eye visits may be necessary, depending on what the examina-
tion or specialized tests reveal about visual function. If the child is found to
have normal eye function, then visual screening at school age is the usual
next step. If signiWcant disability is present, then follow-up as indicated by
the specialist is appropriate. Ask your PCP about making a referral to an eye
specialist if you are concerned that your child cannot see properly.
When should my Routine screening of hearing in the newborn is now done in most newborn
child’s hearing be nurseries in the United States. As is true for vision, routine health visits to
tested? the primary care provider should include an assessment of hearing. If there
is any question about the child’s hearing, various tests can be done to clarify
the level of function. Audiometric tests can be performed by an audiologist,

for example, often in coordination with an ear, nose, and throat surgeon. If
this isn’t helpful, then a brainstem auditory evoked response (BAER) can be
done. This is a special test that can be used even for a very young child. Dis-
cuss your concerns and questions with your PCP or case manager.
Which specialist Some PCPs are comfortable testing and treating children who have seizures,
should treat while others will want to refer your child to a specialist. Children with new
seizures in a child? seizures would be referred to a pediatric neurologist, a physician who spe-
cializes in treating illnesses of the nervous system in children. Seizures that
are easy to control and for which no speciWc cause has been found might
continue to be treated and followed up by the child’s family doctor or pedi-
atrician. Seizures caused by fevers (called febrile seizures) are limited to one
or a few episodes and do not need treatment. These can be evaluated and
followed up by your primary care provider. (For more information about
seizures, see Chapter 3.)
Does my child The surgery to place a shunt in the brain to drain excess Xuid from the ven-
need to see a spe- tricles of the brain is performed by a neurosurgeon. There are pediatric neu-
cialist to follow up rosurgeons who specialize in treating children, but many neurosurgeons
on a cerebral treat both adults and children. The child with a shunt may be followed by a
shunt? pediatric neurologist or a pediatrician, and if there are no problems a neu-
rosurgical evaluation every one to two years is a good course of treatment.
If the shunt functions well, more frequent follow-up is not necessary.
My child has prob- The primary care physician should be the Wrst to evaluate this type of prob-
lems with swallow- lem. He or she may make a referral to a specialist—a developmental pediatri-
ing and poor cian, for example, who specializes in the evaluation of these problems—to
weight gain. help evaluate swallowing function and poor weight gain. The developmen-
What kind of doc- tal pediatrician often works with a team, who participates in the evaluation.
tor do we need? The team may include a nutritionist, who can evaluate how much nourish-
ment your child is actually getting and how much he needs; a speech pathol-
ogist or an occupational therapist, who is trained to do swallowing evalua-
tions; the staV of an x-ray department, who can perform special tests, such
as x-ray swallowing tests; and a pediatric gastroenterologist, who can evalu-
ate your child’s gastrointestinal system. Swallowing and weight gain prob-
lems can be very complicated to treat, but treatment is exceedingly impor-
tant to the child’s growth, and therefore it is important to make use of a full
team of specialists (see Chapter 3 for more details of this problem).
Who should my This is another situation that should Wrst be brought to the attention of your
child see if he vom- child’s primary care provider. If referral is needed, the PCP will probably rec-
its frequently? ommend that your child see a gastroenterologist. Chronic or recurrent vom-
iting is best evaluated by a pediatric gastroenterologist, who specializes in
caring for the gastrointestinal system and may utilize tests such as endoscopy
(looking into the stomach) and a pH probe. If a problem such as gastroin-
testinal reXux is identiWed and medicine can’t control it, then a pediatric gen-
eral surgeon may be called to do a surgical procedure to correct it. Pediatric
radiology specialists are also called upon to perform sophisticated x-ray tests
and to evaluate the function of the stomach and intestines (see Chapter 3 for
more details of this problem).
Who should clean Dental examinations every six months starting at age 18 months are espe-
my child’s teeth cially important for the child with CP because normal saliva Xow, chewing,
and how often? and swallowing are frequently disrupted. Good professional cleaning and
evaluation for gum overgrowth and development of cavities is important. If
your family dentist is not comfortable dealing with a child with a disability,
then seek the services of a pediatric dentist, called a pedodontist. These spe-
cialists are familiar with and specialize in caring for the teeth of children, es-
pecially of children with disabilities. If your child has signiWcant gum over-
growth, he or she may be referred to a dental surgeon who can surgically
reduce the overgrowth.
Who can help Severe constipation can be a diYcult problem, and one seen frequently in
me with my children with CP. It is important to bring this problem to the attention of
child’s severe your primary care provider so he or she can monitor and treat your child. If
constipation? your PCP is not comfortable treating this problem in children with CP, your
child should be referred to a developmental pediatrician specializing in the
care of such children, or to a pediatric gastroenterologist who will be able to
set up a program to help with this problem.
Who can help Special education teachers and school nurses and therapists frequently have
with toilet routines that can be used in toilet training children with disabilities, and they
training? can describe a routine for you or provide a written explanation of what’s in-
volved. You can also request information from your primary care provider
or a developmental pediatrician. (See also the description of toileting rou-
tines in “Toilet Training,” in Part 2.)
If your child resists behavioral attempts at toilet training for urine and is
believed to be cognitively able, then an evaluation by a pediatric urologist
may be suggested. He or she can test your child’s bladder function and abil-
ities to make certain that there is not a physical problem with your child that
is causing problems with incontinence.
Who should I see The problems related to the bones and muscles are addressed by pediatric
concerning my orthopedists. The pediatric orthopedist generally addresses deformities and
child’s diYculty problems with the functioning of the hands, arms, legs, and feet, as well as
with her arms, deformities of the spine such as scoliosis and kyphosis. This health care spe-
legs, or back? cialist attempts to improve alignments that can make the child function bet-
ter and works to prevent deformities insofar as is possible.
After a consultation or treatment with a pediatric orthopedist, it is gen-

erally best to schedule routine follow-up examinations, because a child’s
deformities change as the child grows. Follow-up with an orthopedist
every six to twelve months is usually indicated, and it is preferable to fol-
low up with a pediatric orthopedist who is interested in the child with cere-
bral palsy.
Who will tell me Recommendations for bracing vary, depending on the child’s problems and
what kind of brac- on the specialist making the recommendation. A physical therapist fre-
ing my child quently assesses a child for the possible beneWts of bracing the legs, and an
needs? occupational therapist evaluates and makes braces for the child’s hands and
arms. The orthopedist or physiatrist (physical medicine specialist) usually
evaluates the child and writes the prescriptions for bracing. In some com-
munities, pediatric physiatrists routinely follow children with cerebral palsy
and prescribe braces. In many other communities, pediatric orthopedists
routinely follow patients and provide brace prescriptions.
Generally, routine follow-up with both an orthopedist and a physiatrist
is not necessary. If the child is followed only by a physiatrist, however, the
physiatrist must be a pediatric physiatrist who is familiar with all types of de-
formities and will actively monitor the child for the development of prob-
lems that will need an orthopedic surgeon, such as hip dislocation and scol-
iosis. If the child is followed by a pediatric orthopedist, then the pediatric
orthopedist should pay attention to the child’s bracing and seating needs.
There are some circumstances where therapists recommend braces and pri-
mary care physicians write the orders. This situation is less than ideal, be-
cause few primary care physicians fully understand the appropriateness of
the brace.
Who should eval- Seating is much like bracing, in that it involves the disciplines of physical
uate my child’s therapy, occupational therapy, orthopedics, and physiatry. In ordering a
seating and rec- chair it is important to take into consideration the family’s, as well as the
ommend an child’s, needs. (For a detailed description of the appropriateness of wheel-
appropriate chair? chairs, refer to Chapters 6 and 7 and the wheelchair section of Part 2.)
Medical Care Providers

The following medical providers have specialty training and expertise
that allows them to provide specialized care for the child—and for the entire
family. Your family may encounter many of the following medical specialists
as your child grows and develops. One way to determine whether a physi-
cian or other health care provider is competent in the special area in which
they practice is to ask if they are “Board CertiWed” in this specialty.
What is Board Board CertiWcation—For a physician to be recognized as one of the special-

CertiWcation? ists listed below, they need a certain number of years of specialized training
(called residency or fellowship training), and then they must pass a certiWca-
tion examination administered by an appropriate specialty board. Most of
the pediatric specialty boards are administered by the American Board of Pe-
diatrics, though some medical specialties such as neurology and psychiatry
(American Board of Psychiatry and Neurology) and physical medicine and
rehabilitation (American Board of Physical Medicine and Rehabilitation)
have their own board. The surgical specialties (such as general surgery, or-
thopedics, and neurosurgery) also have their own board, and accredit sur-
geons in these specialty areas. Although there is special fellowship training
to be a pediatric surgeon, there is no board certiWcation in pediatric surgery
or in the surgical subspecialties at the present time.
To remain board certiWed, physicians must stay up to date and must be
retested periodically by their specialty board. If a physician is board certi-
Wed, it means he is believed to be competent by a group of peers in the spe-
cialty area.
Adolescent specialist. Physicians with this specialty training may Wrst
have trained in pediatrics or in internal medicine (or both) and then done
specialized training in adolescent medicine. They have training and experi-
ence in treating the unique emotional and physical problems of adolescents,
including drug abuse, adolescent pregnancy, and hormonal dysfunction.
They may also be the physicians who perform a teenager’s Wrst pelvic exam
and prescribe forms of birth control, which for the disabled youngster can
be vitally important but also medically complicated.
Audiologist. An audiologist is a professional who specializes in testing
hearing, and evaluating the degree of hearing impairment. An audiologist
also specializes in the maintenance, prescription, and development of hear-
ing aid devices.
Cardiac surgeon. Primarily involved in performing surgical procedures
on the heart and chest, the pediatric cardiac surgeon is trained in general sur-
gery as well as in the specialties of pediatric cardiac surgery and chest surgery.
Cardiologist. A cardiologist addresses problems of the heart. The pedi-
atric cardiologist is a medical physician who is trained in pediatrics and in the
specialty of cardiology.
Chiropractor. The chiropractor has graduated from chiropractic school,
where the main emphasis is on manipulative therapy. The theories and per-
ceptions of chiropractors diVer signiWcantly from the theories and percep-
tions held by medical physicians. Some of the techniques employed by
chiropractors are similar to those used by physical therapists, although the
rationale for treatment and healing is very diVerent. For children with CP,
there seems to be little gained by frequent or long-term chiropractic treat-
ments. Although the chiropractic treatments are generally not harmful, they
place another burden on the family’s Wnances and time.
Dentist. This practitioner has graduated from dental school. Some den-
tists then take subsequent specialization training in pediatrics. The specialist
most likely to be encountered by the parent of a child with cerebral palsy is
the pedodontist, a dentist who specializes in the care of children. An oral sur-
geon is often consulted for mouth and tooth surgery.
Developmental pediatrician. A developmental pediatrician is a med-
ical physician who has trained in pediatrics and has extra training and expe-
rience in the developmental problems of children. There are two types of
specialized training (and certiWcation) in this Weld: neurodevelopmental dis-
abilities and developmental-behavioral pediatrics. CertiWcation in neuro-
developmental disabilities means the physician has expertise in treating
children with physical and neurological disabilities, often in many aspects of
their care, ranging from treating seizures to constipation. Physicians certi-
Wed in developmental-behavioral pediatrics have special expertise in treating
behavioral issues of children, whether they have disabilities or not, and often
treat children with ADHD. There is a great deal of overlap between these
two types of developmental pediatricians, as well as with child neurologists,
child psychiatrists, and pediatric physiatrists.
Endocrinologist. A pediatric endocrinologist is a medical physician
with expertise (and certiWcation) in the diagnosis and treatment of medical
problems associated with the various hormonal systems of children. These
may include dysfunction of the thyroid or parathyroid glands, growth hor-
mone deWciency, diabetes mellitus, and delayed or precocious sexual matu-
rity. Pediatric endocrinologists have training in general pediatrics and then
extra training and experience in endocrinology.
Gastroenterologist. A pediatric gastroenterologist specializes in the
care of stomach and intestinal problems of children. Such problems might
include poor weight gain, swallowing diYculties, frequent vomiting, and
severe constipation, diarrhea, or other gastrointestinal problems. Pediatric
gastroenterologists have training in general pediatrics and subspecialty train-
ing in gastroenterology. They also perform a variety of procedures, from
looking into the intestinal system with a lighted tube called an endoscope to
doing special tests, such as a pH probe, which measures acid in the esopha-
gus as a sign of reXux. These specialists also perform some minor surgical
procedures, such as placement of feeding tubes.
General pediatrician. A pediatrician is a medical doctor with specialty
training in pediatrics, which is the care of infants and children, usually until
age 21. These practitioners specialize in caring for the routine illnesses of
children, giving immunizations, and preventing disease in children. They
are concerned with the child’s general growth and development. Based on
their evaluation of the child, pediatricians will make referrals to any special-
ist and collaborate with that specialist in the care of the child. Usually par-
ents should turn to their general pediatrician Wrst when their child has a
new problem.
Med-Peds. Physicians with this training have usually had training for
two years in pediatrics and two years of internal medicine, thus making them
eligible to be board certiWed in both specialties. They provide primary care
to children and adults, and are often the ideal physician to provide care to a
disabled adolescent who will need ongoing care into adulthood.
Nephrologist. A pediatric nephrologist has training in general pedi-
atrics and subspecialty training in nephrology (diseases of the kidneys). The
nephrologist is responsible for treating children with chronic renal failure,
including performing renal dialysis (maintaining patients on the kidney ma-
chine). There are also many chemical (electrolyte) imbalances that can occur
due to problems in the kidney, which the nephrologist addresses.
Neurologist. Some neurologists work with both adults and children,
but the pediatric neurologist is most commonly involved in the care of chil-
dren with cerebral palsy and seizures. This medical physician has training in
general pediatrics and intensive training in neurology (diseases of the brain
and nerves). Their certiWcation includes neurology and psychiatry, with spe-
cial competence in child neurology. Neurologists are the physicians who in-
terpret EEGs (brain wave tests) looking for seizures, and they often are the
ones who diagnose a neurological condition such as CP.
Neurosurgeon. The primary role of a neurosurgeon is to operate on the
brain and spinal cord. A neurosurgeon is a surgeon whose specialty training
is in neurosurgery (surgery on the brain and nerves). A pediatric neurosur-
geon also has training in performing surgery on children. For the child with
CP, neurosurgeons might be consulted to place a brain shunt for hydro-
cephalus or to do a dorsal rhizotomy.
Nurse. Most nurses have a bachelor’s degree in nursing, and many
have master’s degrees. There are many specialty areas of nursing, each with
its own certiWcation. If the child is a patient in the hospital, he may see nurses
specializing in operating room care, recovery room care, intensive care, and
bedside care within the hospital.
Pediatric Nurse Practitioners (PNPs) and Clinical Nurse Specialists
(CNSs) are Advanced Practice Nurses (APNs) with a master’s degree. They
work under the direction of a pediatrician or specialist and assist the physi-
cian in providing primary care, specialty care, case management, and coor-
dination of care to children with cerebral palsy, children with other special
needs, and healthy children. They are also excellent resources for families of
children with special needs. Nurse Practitioners and many Clinical Nurse
Specialists are able to perform a full physical examination, and comanage,
along with their physician colleague, new or chronic health issues. Depend-
ing on the state in which they practice, they may have authority to write pre-
scriptions. In addition to their RN license, PNPs and CNSs must have an

Advanced Practice Nurse license and they must be professionally and legally
certiWed in the state where they practice.
A parent with a child with cerebral palsy will most likely encounter the
school nurse, who is a pediatric nurse. School nurses are also an excellent re-
source for ongoing care and the various problems that a child with CP may
encounter.
Nutritionist. A nutritionist may have a bachelor’s or a master’s degree
in nutrition and may be found in a variety of health care settings, including
schools, public health departments, hospitals, and doctors’ oYces. The role
of the nutritionist is to ensure that the child is well nourished. To do this, the
nutritionist may monitor how a speciWc child compares to what is consid-
ered normal height and weight for a certain age. The nutritionist assesses
feeding history, dietary intake, and blood tests that reXect nutritional status
in order to determine whether the child has nutritional deWciencies. For the
child with CP, the nutritionist advises parents about methods and speciWc
food types that will provide proper nutrition and meet requirements for
caloric intake.
Occupational therapist. An occupational therapist has a bachelor’s or
a master’s degree in occupational therapy. There are a number of subspecial-
ties within occupational therapy. The therapists primarily encountered in
the treatment of children with cerebral palsy, are pediatric occupational ther-
apists. The primary issues they address are Wne motor skills, improving the
functioning of the upper extremities, and, especially, the child’s skills in ac-
tivities of daily living, in order to maximize the child’s independence. They
also make hand splints and provide recommendations for seating.
Ophthalmologist. An ophthalmologist is a medical doctor and a sur-
geon specializing in problems of the eye and eye musculature. Areas of spe-
cialization include determining a child’s ability to see, performing surgery to
correct crossed eyes, and diagnosing and treating eye diseases.
Optometrist. Although not a medical physician, an optometrist has a
doctoral degree in optometry. Optometrists specialize in evaluating sight
and prescribing eyeglasses. They generally do not prescribe medications ex-
cept for some limited topical medications. They can examine the eye for
problems of refraction and can write prescriptions for exercises and correc-
tive lenses. They do not do surgery. For the child with CP, they may be in-
volved in evaluating a child’s visual ability, in addition to Wtting eyeglasses.
Orthopedist. The pediatric orthopedist is a surgical physician trained
in general orthopedics with specialty training in pediatrics. For the child
with CP, routine follow-up with an orthopedist if the child is signiWcantly
involved is important both to prevent deformity and to help maximize the
child’s function. There are many diVerent subspecialties in orthopedics; gen-
erally the child should be treated by a pediatric orthopedist who has exper-
tise in the area of speciWc concern. Within pediatric orthopedics, there is a
group of physicians who are interested in cerebral palsy.
The orthopedist does surgery on the musculoskeletal system. There are
some pediatric orthopedists who follow children with cerebral palsy who do
surgery only on the lower extremities and then refer the child when needed
to an orthopedic spine surgeon or a hand surgeon with a subspecialty in this
area. Your speciWc community arrangement dictates how these referrals are
handled, but many pediatric orthopedists specializing in the care of children
with cerebral palsy are able to address all of the surgical needs of the child re-
lated to the musculoskeletal system.
Orthotist. An orthotist makes and Wts braces for the legs and arms.
This is the specialist who usually makes the AFOs worn by children with CP.
Most orthotists have had special training, have served an apprenticeship,
and were certiWed by passing a national examination. They use the most
modern materials—very strong plastics, which often require special equip-
ment to mold and shape—to construct AFOs and other braces. (Some
simple braces for the legs may be made by physical therapists, but the ma-
terials they use are often weak and tend to break easily.)
Osteopathic doctor. An osteopath is a medical physician who has
graduated from osteopathic school, a school whose curriculum is identical to
that of most medical schools. Osteopaths specialize, just as medical doctors
do. Upon graduation the osteopathic physician receives a degree called a
Doctor of Osteopathy (D.O.), whereas upon graduation from medical
school a medical doctor receives a Doctor of Medicine (M.D.). D.O.’s and
M.D.’s practice similarly and may train at some of the same institutions.
Once in practice, it would be hard to distinguish these two types of physi-
cians in terms of their practice or knowledge.
Otolaryngologist (ENT). This is a surgical physician who after med-
ical school primarily trains in ear, nose, and throat surgery, and subsequently
specializes in one of many diVerent areas. Pediatric ear, nose, and throat
(ENT) specialists are the otolaryngologists most often encountered by fam-
ilies with children with cerebral palsy. These physicians address severe ear
problems such as hearing problems and may be involved in the identiWcation
of the cause of the hearing problem, and in its treatment, such as place-
ment of a cochlear implant or of a hearing aid. They are also involved in plac-
ing ear tubes, addressing some swallowing problems that originate in the
throat, performing tracheostomies, providing care for tracheal tubes, and
doing surgery on the upper airway and on the salivary glands if there is ex-
cessive drooling.
Physiatrist. A physiatrist is a medical physician whose training is in
physical medicine and rehabilitation (PM&R), a specialty devoted to care
of people with physical disabilities. The physiatrist tests the patient’s func-
tioning, sets up goals for the patient, and manages rehabilitation to reach
the goals that have been set. Some physiatrists specialize in the care of chil-
dren. They have done extra fellowship training in pediatric rehabilitation,
and in addition to being certified in PM&R, they can also be certiWed in
Pediatric Rehabilitation Medicine. In some communities, the pediatric
physiatrists run the cerebral palsy clinic and provide excellent services for
prescription of wheelchairs and braces. Recommendations for therapy and
educational programs are also within their specialty. Physiatrists do not
perform surgery, but rather refer the child to an appropriate orthopedist if
surgery is indicated.
Physical therapist. The physical therapist has a bachelor’s or a master’s
degree in physical therapy. P.T.’s are interested in improving a patient’s
muscle tone, movement patterns, gross motor skills, range of motion, pos-
ture, and balance. They often use exercise and whirlpools, and help their pa-
tients practice walking and standing. Their goal is to improve as far as pos-
sible the child’s gross motor skills such as walking, sitting, and transfers from
one place or position to another. There are many subspecialties in physical
therapy. Generally for the child with cerebral palsy the pediatric physical
therapist is recommended. Most physical therapists working in school sys-
tems are pediatric P.T.’s. There are also a great variety of therapy techniques,
and any therapist may have individual certiWcation in one or a number of
these techniques, such as NDT (neurodevelopmental therapy). The P.T. is
frequently the Wrst to spot problems such as hip deformities or scoliosis
which may need orthopedic care.
P.T.’s can also be an excellent resource for providing suggestions for med-
ical care providers, especially for specialty care for children with CP. In fact,
the P.T. who is treating many other children with CP may be the best source
of this information.
In addition to physical therapists, there are P.T. assistants who have as-
sociate degrees and can provide therapy under the direction of a P.T.
P.T. aides have on-the-job training and may do therapy as prescribed di-
rectly by the P.T.
Physician’s assistant. A physician’s assistant generally has a bachelor’s
or a master’s degree as a midlevel practitioner, and may also have extra train-
ing in an area of specialization. The physician’s assistant may work directly
with the physician in examining and treating the child, and may assist in the
operating room. The physician’s assistant in the cerebral palsy clinic can be a
valuable source of suggestions on care and treatment for the child with CP,
and can provide useful general and speciWc information about cerebral palsy.
Many physician’s assistants develop in-depth knowledge because they de-
vote their eVorts to helping patients who have speciWc kinds of medical
problems.
Podiatrist. After Wnishing podiatry school, the podiatrist specializes in

the care of foot problems. Generally podiatrists are focused on the front of
the foot and are not trained in treating the whole body system. Few podia-
trists have special training in the care of children with cerebral palsy. For the
child with cerebral palsy, questions related to foot deformities are best ad-
dressed by the pediatric orthopedist.
Psychiatrist. A psychiatrist is a medical physician who specializes in be-
havioral problems, emotional disorders, and mental illness. The psychiatrist
prescribes and is the recognized medical expert on the eVects of medication
on behavior. Pediatric psychiatrists have subspecialty training in the psychi-
atric problems of children. They may also provide counseling in addition to
prescribing medications.
A question parents frequently ask is whether their child should see a psy-
chiatrist or a psychologist. The answer for any one child depends in part on
how the child and the family relate to the speciWc therapist. The major dis-
tinction between the two is that the psychologist is able to provide sophis-
ticated testing, whereas the psychiatrist is able to prescribe medications.
Both can counsel patients and their families, as can social workers.
Psychologist. The psychologist has earned a Ph.D. in issues relating to
behavior. Some psychologists have special training in child development;
they may use standardized tests to determine the child’s intellectual po-
tential and current level of functioning. Other psychologists have special
training in counseling families and children, and they may help families and
children to address behavioral problems. A psychologist also makes recom-
mendations for the best educational setting for the child. Psychologists are
often associated with schools in providing testing. Psychologists do not pre-
scribe medications.
Pulmonary specialist. A pediatric pulmonary specialist is trained in
general pediatrics and has completed subspecialty training in pulmonary dis-
eases (diseases of the lungs). He or she evaluates and treats diYcult problems
related to the lungs and may perform procedures such as a bronchoscopy, a
procedure that involves the use of a lighted tube to look at the airways of the
lung (trachea and bronchi) from within. For children with cerebral palsy,
common lung problems include frequent pneumonia and bronchitis sec-
ondary to aspiration. Severe asthma is another common problem addressed
by the pulmonary specialist.
Social worker. The social worker has a bachelor’s or master’s degree
in social work and is trained to help families cope with their needs. Social
workers are found in a variety of settings—the community, school, hospi-
tal—and are associated with a variety of private organizations such as the
United Cerebral Palsy Associations (UCPA). Social workers help with the
social part of living with a disability, such as family and Wnancial aspects. So-
cial workers provide counseling, may be case managers, and advise families
on how to gain access to community services. They help investigate social
situations. Medical social workers tend to work in hospitals to help families
deal with the problems of an acute medical illness. They can address behav-
ioral problems and help parents investigate resources. Psychiatric social
workers may provide counseling and help families with behavioral issues.
General social workers work for the state and help identify and secure child
welfare services and housing as needed.
Speech therapist. The speech therapist works with language, speech,
swallowing, and hearing, and specializes in developing techniques to teach
children to talk. These practitioners may help the child who has a speech or
hearing problem to speak properly or to use sign language. They may also
be involved in developing augmentative communication devices, from
simple picture boards to sophisticated electronic devices. They are especially
important to the child who is cognitively able to communicate but has a
communication disability. Another major area addressed by the speech ther-
apist for the child with CP is swallowing problems. The speech therapist may
be involved in evaluating, via the barium swallow test, the child’s ability to
eat safely. They may also be involved in trying to improve the child’s ability
to chew and swallow safely through various therapeutic methods.
Surgeon. A pediatric surgeon is a surgical physician who has under-
gone training in general surgery, as well as subspecialty training in pediatric
surgery. For most problems requiring surgery on the gastrointestinal sys-
tem, the liver, or the abdomen, the general surgeon is consulted. Many pe-
diatric surgeons also perform limited specialty surgeries, such as needed to
treat undescended testicles. They also remove skin lesions.
Urologist. A pediatric urologist is a surgical physician whose training
is in urology with subspecialty training in pediatric urology. This specialist
performs tests on and investigates problems of the urinary tract and male
genital system, primarily looking at its mechanical functions and making
surgical corrections.
Financing
Care for
the Child
with
10
Cerebral
Palsy
♦ H E A LT H C A R E E X P E N S E S for a child or adult with a

chronic condition can be very high and can impose a Wnancial burden on
families, the extent of which is highly dependent on the nature and severity
of the condition. Many families with a member who has a chronic illness can
expect to incur high health care expenses year after year. While the needs of
individuals vary, most children or adults with cerebral palsy require hospital
care, ambulatory care, and case management services—and the cost of all
this health care adds up.
This chapter describes various ways in which families and individuals can
pay for health care. Health insurance has been undergoing intense scrutiny,
however, and it is possible that there will be extensive changes in what we
now know as the health care system in the future. What is presented in this
chapter is an overview that is intended to provide a starting place for fami-
lies and individuals seeking information about paying the high costs of
health care. A list of providers of speciWc services may be found at the end of
the chapter.
How is health care Funds come from a variety of sources. The most common sources are a fam-
Wnanced? ily’s own funds, private health insurance, government programs, and private
philanthropic sources.
How much of the It is estimated that families of children with a disabling condition pay about
cost does the family one-Wfth of their children’s medical care bills directly out of pocket. Some
cover? pay more, some pay less. The adult, on the other hand, pays according to
their employment status. If the adult is employed, health insurance usually
supplements the adult’s expenditures for health care. If the adult is depen-
dent and is without private health insurance or other resources, Medicaid
may cover the cost of medical care. Many private insurance policies do not
provide chronic care coverage; Medicaid pays medical bills for some low-
income people who meet eligibility requirements as determined by the state.
What is private Private health insurance is insurance that is provided for by private individ-
health insurance? ual or group funds (such as from an employer), rather than insurance that is
248 ♦ financing care for the child with cerebral palsy
oVered by public funding through a government unit or agency (Medicare,

for example). For the most part, private health insurance that covers a de-
pendent child’s medical expenses is group coverage that is part of the parent’s
work beneWts package. Group coverage private insurance of this type can be
a fee-for-service plan that pays for the service after the service is provided or
a managed care type of insurance. Typically, a group insurance program ob-
tained through employment is more generous with beneWts, but this must
be evaluated by the family. Individually purchased policies tend to contain
restrictions on services covered and frequently exclude preexisting condi-
tions. It is unlikely that a family will be able to get private insurance for their
child with CP, nor would private insurance companies issue individual poli-
cies to an adult with CP.
Another well-known form of private insurance is managed care. This form
of insurance came into existence to deal with rising health care costs, and
their primary purpose is to contain costs (this is known as “cost contain-
ment”). Currently, many policies are administered through a primary care
physician who then makes necessary referrals to other health care profes-
sionals. Many policies include speciWc physicians within the “network” of
the plan, and patient-subscribers are fully covered only if they are treated by
those physicians. Some policies allow for treatment by other physicians who
are considered “out of the network,” or privately chosen, but the patient
bears an additional expense for consulting these physicians. Children with
CP and other developmental disabilities may continue coverage as a depen-
dent on their parents’ private or employer-sponsored group medical plans
even after the child leaves the school system. Parents can be 60 years old with
a child who is 40 and still have coverage for their disabled child as a depen-
dent. Be sure to conWrm this with your employer and insurance company. If
an employer is changing group insurance companies, it would be wise to
check on continued dependent coverage prior to the plan change. If a per-
son with CP is a full-time employee of a company providing group beneWts,
she cannot be discriminated against and must be oVered all of the programs
(medical, dental, pensions, and short- and long-term disability) that are avail-
able to other employees.
The scope of coverage and the beneWts available in private health insur-
ance vary signiWcantly from policy to policy and from group to group, and
can often be confusing. It is critically important for parents to check policy
provisions. There are policies that exclude beneWts for speciWc conditions,
such as mental retardation or autism. Parents seeking employment should
carefully check on the beneWts oVered. Employers who self-insure can make
What services are their own plan provisions.
covered under
private insurance, Each policy must be read carefully and judged separately. No assumptions
and what are the can be made about the extent of coverage. The family must investigate their
limitations? own coverage and become knowledgeable about their beneWts before they
financing care for the child with cerebral palsy ♦ 249
incur large costs. The employee should consult with the personnel oYce, or
the oYce that oversees administration of the health insurance plan, for as-
sistance in understanding beneWts and gaining access to them. Commonly
covered expenses include such things as a hospital room, surgeons’ and physi-
cians’ services provided in a hospital, and outpatient diagnostic tests, such
as x-rays.
Private health insurance may be adequate when a child’s needs are limited
to basic physicians’ services and basic hospital services. When the child with
a disability has multiple needs consisting of both community and home ser-
vice and care, however, private insurance may not provide the Wnancial pro-
tection needed for access to all health care needs.
What do I need Deductible clauses, co-insurance, maximum beneWt levels, and limits on out-
to know about of-pocket liability are the four parts of any health insurance policy that re-
any health insur- quire close scrutiny. A deductible is the amount of money a family must pay
ance policy I’m before the insurance company will pay anything. When considering an in-
considering? surance policy, evaluate what the deductible will mean to you in terms of
out-of-pocket costs. Co-insurance is the portion of charges that must be paid
by the family after the deductible portion has been met. It is not uncommon
for the family to bear 20 percent of hospital, physician, and related fees, even
after the deductibles have been met. Maximum beneWts are the dollar maxi-
mum, or ceiling, that the insurance company agrees to pay in a given period
of time or for a given illness. For a speciWc illness, the insurance company will
pay a speciWc amount. Or, the insurance company will pay a certain amount
for each insured person every year, or the insurance company will specify a
maximum lifetime ceiling for the cost of treatment.
The limit on out-of-pocket liability, or a “stop-loss clause,” is the limit the
insurance company imposes on the family’s out-of-pocket expenses for a
given calendar year before the insurance company pays 100 percent of fur-
ther covered charges. Covered charges vary from policy to policy, and the
family must not assume that a speciWc treatment is subject to this limit with-
out Wrst verifying this with the insurance company.
If my insurance Yes, but insurance policies covering a broad range of catastrophic problems
will not cover all are very expensive. If you can aVord the price, you can probably buy almost
my expenses, can I any type of coverage you desire. These policies carry a hefty premium and
purchase more? very large deductibles and co-insurance requirements.
Are there limita- While group policies tend to be more generous in their coverage, this is not
tions to the fee-for- always the case. Preexisting clauses may exist in the policy, limiting access
service policies? for children with chronic conditions. Insurance may not pay for preexisting
conditions. This is an important issue to evaluate when changing jobs and
employers—and therefore health insurance carriers.
Routine dental care, eyeglasses, hearing aids, and routine physical ex-
aminations may also be excluded from policies. Mental health services and
home adaptations to allow the child to be cared for at home are frequently
not covered.
What limitations The insurance company may recommend that you seek treatment with one
can the insurance of its preferred providers, usually within its network, who agree to provide
company impose service at a predetermined cost. If you agree to utilize a preferred provider,
on care or the insurance company pays the physician a higher percentage of covered
treatment? charges—approximately 90 percent instead of 80 percent.
Insurance companies often utilize a second surgical opinion. In certain
types of surgical cases, a second opinion must be obtained or the insurance
company will not pay the full beneWt. Often, the second opinion must come
from one of the company’s preferred providers.
What do HMOs Health maintenance organizations (HMOs) are a form of managed care.
provide? They can be both insurers and providers of care; they oVer prepaid health
plans. Employers may provide HMOs as part of their beneWts package, in
which case a monthly premium is paid by the employer, with the employee
usually contributing a speciWc dollar amount to the premium, as well.
HMOs usually provide preventive services as a beneWt, while most fee-for-
service programs do not. Families select a primary care physician within the
plan who then authorizes care required from any other physician or hospi-
tal within the plan or network. The approach is used to keep all needed ser-
vices within the network in order to keep costs under control. If a referral
is made to a physician outside of the plan or network, there is no way of
controlling charges, because the plan does not have a contract with that
physician.
What government Medicaid is a program of federal grants to states that pays for certain health
assistance is services for eligible people. The eligibility criteria are speciWc to each state
available? but are based on Wnancial need. Each state may add services over and above
those required by the federal law.
Medicaid (known by diVerent names in diVerent states, such as TennCare
in Tennessee and TEFRA in South Carolina) is a program run by the states;
a percentage of the costs is funded by the federal government. It is not avail-
able in all states for children under 18, unless the child qualiWes for SSI. If a
child under 18 applies for SSI, eligibility is based on the parents’ income and
assets (less than $2,000 in assets, less than $2,100/month income). For most
of those states that provide Medicaid without SSI, eligibility is not typically
based on parents’ assets or income, but rather on the child’s assets. If assets
do not exceed $2,000 and the child meets the medical criteria, he would nor-
mally be eligible. However, it is important that you check with the state in
which your child is residing. At age 18, the income and assets of the person
with CP (but not of his or her parents) become the critical factor in deter-
mining eligibility.
What kinds of ser- Generally inpatient hospital care, physicians’ and other outpatient services,
vices are covered by skilled nursing services, and lab tests are covered. Coverage of things such as
Medicaid? medications, home health care, eyeglasses, and dental care are determined by
the individual state. Investigate limits of Medicaid coverage in your state.
Medicaid regulations change from time to time because of budgetary con-
straints and use of resources, and Congress continues to reform laws with re-
spect to eligibility, reimbursement, and beneWts.
For children who are highly dependent on technology, who might other-
wise remain in the hospital to receive skilled nursing care, Medicaid has a pro-
gram for those seeking greater independence that is aimed at reducing the
costs of hospitalization and decreasing unnecessary hospital stays. Referred
to as the Medicaid Home and Community Based Waiver, the program pays
for the needed care, but the care is given in the home or a community-based
program certiWed to provide such services, such as a group home. Because
eligibility requirements vary from state to state, you’ll need to call your Med-
icaid oYce or social services department for assistance in evaluating whether
or not you can beneWt from this program.
Medicaid also covers long-term care. However, beneWts vary among the
states, and assets of the individual must be below $2,000. Some people try
to rid themselves (or spend down) their assets to qualify. This “spend down”
can be avoided by creating a “Payback Special Needs Trust” and transferring
the person’s assets to this trust. The money is available to the person but is
not considered a “countable resource” for Medicaid eligibility. Medicaid
may invoke a “three-year look back provision” in the case where assets are
transferred. This means that the person would have to wait three years for
Medicaid beneWts to begin. To avoid this situation, you may want to consult
with a special needs planner.
What is nursing This is insurance that would cover basic care in a nursing home or other
home insurance? long-term care (LTC) environment. Some policies may include coverage for
long-term skilled care, but the operating word is “skilled.” Skilled care means
that the individual requires nursing care, under the policy deWnition of nurs-
ing. The cost of long-term care for individuals who require custodial care
rather than nursing care will not be covered. Custodial care is rarely covered
by insurance policies. LTC is getting more expensive as elderly citizens con-
tinue to live longer. This coverage is far more aVordable if parents have the
foresight to purchase this type of policy prior to age 65. In addition, it is im-
portant that those buying LTC are willing to go to a nursing home. Anyone
who would not live in a nursing home would be wasting their money. An al-
ternative is an “at home care policy.” These policies typically are less expen-
sive. Many provide for both professional services and those given by a fam-
Are there other ily member or friend.
programs for chil-
dren with special Yes. What used to be called Services for Crippled and Handicapped Children
needs? is now called Programs for Children with Special Health Care Needs. These
are included under the Maternal and Child Health (MCH) Block Grant and
provide case management and other health services such as nursing, social
work, and physical and other therapies to eligible children with chronic ill-
ness. Each state sets its own eligibility criteria and its own list of services cov-
ered. Currently, there is an income requirement; that is, families must earn
less than a certain level before services are oVered. Information on Programs
for Children with Special Health Care Needs may be found at the local oYce
of the state health department, or you can get information from a health care
provider or the state health department responsible for the MCH Block
Grant programs.
What is SSI? Supplemental Security Income (SSI) is an income support program for
aged, blind, and disabled adults, and for children with disabilities. Eligible
children live in low-income households (less than $2,000 in assets, less than
$2,100 per month in income) and must meet the SSI criteria of disability. If
a child is eligible to receive SSI, health care services are received through
Medicaid. Contact the local oYce of the Social Security Administration (SSA)
to determine eligibility. The SSA requires documentation regarding your as-
sets, income, and age, and the child’s age. The adult with a disability is re-
viewed independently of the family. Adults with CP who have limited assets
or who are unemployed may qualify for SSI funding.
SSI eligibility for children under 18 is based on parents’ income and assets
as well as the child’s. After age 18 it is based solely on the child’s income and
assets and medical eligibility requirements. Parents face the problem of how
to keep their child eligible throughout his lifetime. This is where certiWed
special needs planners should be consulted for assistance. Most Wnancial
planners, insurance agents, and attorneys are not familiar with or qualiWed
to advise on the proper way to protect assets for a person with a develop-
mental disability. By proper special needs planning, parents will be able to
pass assets on for their child’s care and have these assets protected from be-
ing used to reimburse the government for Medicaid services received by the
child. Without proper planning, it is possible that the child will become in-
eligible for Medicaid when receiving assets from family members. In addi-
tion, if a proper will has not been prepared by parents, at their death the state
of residence for the person with CP will appoint his or her guardian and
trustees and decide who gets the parents’ assets. Medicaid could immedi-
ately take assets received by the person with special needs for reimburse-
ment. Grandparents also need to be part of this planning, because their will
can negate a properly prepared plan by parents.
What is SCHIP? The Balanced Budget Act of 1997 established the State Children’s Health In-
surance Program (SCHIP), which gives grants to states to provide health in-
surance coverage to uninsured children up to 200% of the federal poverty
level (FPL). States may provide this coverage by expanding Medicaid or by
expanding or creating a state children’s health insurance program. However,

states do not have to participate, and they can also choose to wait up to three
years to implement the program without losing any funds. The legislation
sets eligibility criteria. States can decide to cover all of those children or to
target coverage to a narrower group of children. The eligibility criteria are to
cover uninsured children who are:
• not eligible for Medicaid
• under age 19; and
• at or below 200% of the federal poverty level.
Where can I get For the most part, it is up to you to pursue support that may be available to
information on your child. Some people who may be helpful include your child’s primary
these and other physician, community and public health nurses and social workers, teachers,
programs? members of voluntary organizations, and members of your local Develop-
mental Disabilities Council. You can also contact the various departments
listed within the appropriate chapters of this book, and the organizations
listed in the Resources section, at the end of the book. The section on “Man-
aging the System” in Part 2 may also provide useful information.
What about get- Professionals who work with children and adults with disabilities are very
ting help? helpful. If they do not have an answer for you, they can usually refer you to
someone else who does. An easy way to begin is by calling your public health
agency and explaining what it is that you want. That phone call will give you
many contacts. As you’ll soon discover, there are many ways to gather infor-
mation on resources and programs, services, and agencies, but it is mostly
up to you to do the investigating. There is no “one-stop shopping.”
One good agency to contact is the National Dissemination Center for Chil-
dren and Youth with Disabilities (NICHCY) (see Resources section). Ask
NICHCY to send you information on the topic that concerns you. The infor-
mation is free, and you’ll receive it fairly quickly. Ask in particular for the re-
source sheet for your state, which lists the names and addresses of key agencies
that are involved with individuals with a variety of disabilities. You can also ask
for lists of national resources on a particular topic. NICHCY exists to provide
“free information to assist parents, educators, caregivers, advocates, and oth-
ers in helping children and youth with disabilities become participating mem-
bers of the community.” (They encourage duplication of their materials, too.)
Many associations can provide a list of resources that are available for
people with cerebral palsy. One of these, the United Cerebral Palsy Associa-
tions (UCPA), is listed in the phone book under United Cerebral Palsy; each
region has a local chapter that can provide information on local resources.
One thing to remember is that the agencies you are calling within a speciWc
community usually know the services oVered in that community. If you re-
quire a broader range of information, you will have to contact federal agen-
cies or the national headquarters of UCPA.
It is often helpful to contact your state senator, assemblyperson, and fed-

eral congressperson, and the oYces of other politicians for assistance in lo-
cating the proper government oYce to help you gain access to services. It’s
a good practice to keep a log of all contacts. Record the names, phone num-
bers, addresses, and the day and time you called. Indicate whether the oYce
was helpful to you, and what your conversations were about. You may not
need the agency at the present time, but you should tuck the information
away for future reference.
Group activities and support groups are valuable for a number of reasons.
For one thing, the people who attend can share resource information with
you. While getting out of the house one night a week to attend a support
group may not seem like the most exciting use of your time, it is a good
way to Wnd out from other parents what kind of help they are getting and
how they are getting it. Additionally, the emotional support, both given and
received, can be of great value. The UCPA frequently organizes support
groups or parents’ groups related to CP. If you can’t attend all of them, at
least try to attend a few. Get to know other parents. You may learn a lot
from them.
What organiza- Organizations included in the private sector are groups and agencies such as
tions in the pri- the United Cerebral Palsy Associations, the Easter Seal Society, the Epilepsy
vate sector provide Foundation of America, the Arc: National Organization on Mental Retar-
help for families? dation, and the American Foundation for the Blind. A great range of services
and assistance is oVered by private agencies—for example, residential day
programs, recreation services, home case management, and respite services.
Call these agencies to evaluate the scope of services and to Wnd out whether
you would beneWt from them.
From time to time while you’re exploring for services you may come
across a fund that is made available for speciWc purposes. This may be a
scholarship fund or a fund for vacations for people with special needs, for ex-
ample. Finding these opportunities requires persistence. Ask your librarian
to direct you to resources or directories on philanthropic foundations.
You may also want to consider fundraising on your own. If you are in-
terested in fundraising, the sky seems to be the limit in terms of what people
will do for you and oVer to you. Parents and friends of children with cere-
bral palsy have organized all sorts of community activities, from car washes,
school dances, and marathons, to direct solicitation of donations in con-
tainers at local convenience stores. Parents have mailed out letters to every
organization imaginable in an attempt to obtain donations for equipment,
health care, special schooling, and communication devices. An eVort of this
magnitude requires a good deal of work and persistence. Furthermore, it is
critical for individual fundraisers to work only within the legal guidelines es-
tablished by the federal and state governments. You needn’t be dissuaded by
these guidelines; you only need to be aware of them, and to follow them.
Are there social There are many agencies in your community that you can contact for a vari-
service agencies I ety of purposes, though there is no one speciWc place to go for help. Many
can call for assis- agencies provide a variety of services, some of which overlap, some of them
tance? with great gaps in service. Your state or local department of social services
can oVer a great deal of guidance about how to proceed with a variety of is-
sues. Many, but not all, states have a book that lists available services and
agency oYces which is available to the public for a price. It gives an excellent
accounting of all the human service agencies involved in the care of individ-
uals in a particular state or region.
Contact the Developmental Disabilities Council in your area for infor-
mation. To locate the one nearest you, contact the National Association of
Developmental Disabilities Councils (see Resources section). Groups like
the United Cerebral Palsy Associations, the Easter Seal Society, and the
March of Dimes Birth Defects Foundation can help by directing you to ap-
propriate local services. All social service agencies are community speciWc,
meaning that the organization and administration of the services and the
channeling of funds are unique to each region. Contact your local agencies
for help.
Where can I get In the following list, the need or service is listed in the left-hand column, and
the services I need? various groups that provide the service are listed in the right-hand column.
Contact these groups for help, or ask these groups to direct you to other
groups that may be able to help you.
Food Religious groups; government-funded programs like

school meals and food stamps
Shelter Red Cross; homeless shelters; foster care; emergency
housing (state or local department of social services);
Salvation Army; private organizations (UCPA)
Clothing Salvation Army; religious organizations; Goodwill
agencies
Legal advice American Bar Association; Legal Aid Services; the
courts; local legal organizations or agencies
Financial Religious and volunteer organizations; United Way; ser-
support vice clubs; city or state department of social services;
philanthropic foundations
Emotional Disease-oriented groups; friends and family; religious
and organizations; private and government organizations;
physical community outreach programs; support groups
Navigating
the
Educational
System
11 ♦ T H I S C H A P T E R discusses issues related to the education of

children with disabilities. Much of the material in this chapter comes from
federal public laws and regulations, which can be accessed from a number
of resources, some of which are identiWed at the end of this chapter, and in
the Resources section at the end of this book. Among the most helpful to
parents is the National Dissemination Center for Children with Disabilities
(NICHCY) and UCP, both located in Washington, D.C. These agencies pro-
vide information to parents, often in English and Spanish, which will help
them help their child.
The inclusion of children with disabilities in public schools or the oppor-
tunity to participate in publicly supported education, currently assured un-
der the Individuals with Disabilities Education Act (IDEA), is a relatively re-
cent phenomenon. Federal laws requiring public schools to provide free
appropriate public education to children with disabilities originated in 1970
with the passage of the Education of the Handicapped Act (EHA). This act
established minimum requirements with which states had to comply to re-
ceive federal Wnancial assistance. The amendment of the EHA in 1975 as the
Education of All Handicapped Children Act (EAHCA, Public Law 94-142)
marked a watershed in providing many important legal protections that re-
main intact today. These protections have been carried into its subsequent
revisions and renaming as the Individuals with Disabilities Education Act,
IDEA, Wrst in 1990, then again in 1997, and most recently in 2004.
Core principles of Public Law 94-142 that survive through IDEA and its
reauthorization assure that students who are determined to be eligible for
special education are provided an appropriate educational program. It also
assures that parents participate in the decision making about their child’s
education with full due process guarantees. In the IDEA 1997 update, goals
of reauthorization included: strengthening the role of parents, ensuring
access to the general education curriculum with the participation of stu-
dents with disabilities in statewide assessments, encouraging use of media-
tion to settle disagreements between parents and educators, increasing the
258 ♦ navigating the educational system
focus on eVectiveness of teaching and learning, and reducing paperwork re-

quirements.
Important highlights of the reauthorization of IDEA in 2004 included em-
phasis on the importance of positive behavioral supports and the use of be-
havioral reinforcement as a component in a student’s individualized education
program plan (IEP). It also provides funds for teacher training in this area.
The bill for the Wrst time includes consequences for schools that fail to comply
with IDEA, with the possible loss of some federal funding for schools found
to be in noncompliance with the law for more than two years. Another pro-
vision prohibits school oYcials from forcing parents to medicate their chil-
dren as a condition for attending school. Schools will be required to evaluate
many components of a student’s life, rather than just focusing on test scores,
when considering whether a student is eligible for special education services.
States are required to have in place policies and procedures that guaran-
tee certain procedural safeguards. These ensure that parents be provided
with the information they need to make decisions about the provision of a
free appropriate public education, and that there be procedures in place to
resolve disagreements between parties. Congress recognized that families
should have “meaningful opportunities to participate in the education of
their children at school and at home.”
The process of determining whether a child is eligible to receive special
education services begins with a full and individual evaluation that may be
the result of a parent’s or school’s request. If the school initiates the request,
parents must be asked for their written approval to evaluate their child, and
they must be given notice of their right to object. Similarly, if a parent re-
quests the evaluation, the school may deny the evaluation, but it must assure
the parents of their due process rights to continue to pursue evaluation and
possible eligibility for special education services. In certain circumstances,
an additional evaluation by an independent evaluator may be warranted, in
which case there will be no charge to parents. The purpose of this evaluation
is to gather information related to the child’s progress in the general educa-
tion curriculum, to determine the educational needs of the child, and to de-
termine whether the child needs special education and related services.
The term “special education” in the context of the law and entitlement to
services means specially designed instruction, at no cost to parents, to meet
the unique needs of the child with a disability. This can include: (1) instruc-
tion conducted in the classroom, in the home, in hospitals and institutions,
and in other settings; and (2) instruction in physical education.
Children who are eligible for special education services have the right to
a clearly written IEP. The IEP is the keystone of the process that assures an
appropriate education for each child. It is the document that describes the
child’s needs for speciWc instruction or teaching, annual goals, and how pro-
gress toward those goals will be measured and reported to parents, the re-
lated services and aids that will be provided, the extent of participation in
navigating the educational system ♦ 259
programs for students without disabilities, what, if any, modiWcations will be

necessary in the administration of statewide assessment of student achieve-
ment, and, beginning at age 14, the inclusion of transition planning as a part
of the process. The IEP is developed jointly with parents and school per-
sonnel at a meeting convened at a mutually convenient time. Parents have
the right to be included and approve the educational plans for their child, or
if there is not agreement, they also have the right, through a due process pro-
cedure, to appeal any decisions made about identiWcation, evaluation, and
placement of their child.
Children with disabilities also have the right to receive a variety of related
educational services that make access to education possible. These related
services may include transportation and such developmental, corrective, and
other supportive services as may be required to assist a child with a dis-
ability to beneWt from special education. Such supportive services include
speech-language pathology and audiology services; psychological services;
physical and occupational therapy; recreation, including therapeutic recre-
ation; social work services; counseling services, including rehabilitation
counseling; orientation and mobility services; and medical services (where
the medical services are for diagnostic and evaluation purposes only).
SpeciWc health-related services may be included as a school district obli-
gation under IDEA according to the Wndings of two U.S. Supreme Court
cases. In 1984 the Tatro case established that the medical service exclusion of
IDEA did not apply when “clean intermittent catheterization” was necessary
for the student to beneWt from the special education program, and could be
performed by a nurse or other qualiWed person, not necessarily a physician.
More recently, in 1999, the court, in the case of Garret F. who was a special
education student and also ventilator-dependent, determined that the school
district was responsible for providing full-time nursing services at school,
citing justiWcations similar to the Tatro case. SpeciWcally, because someone
other than a physician could administer the services needed by this young
man, this qualiWed them as related services, not subject to the medical ex-
clusion of the IDEA.
The IDEA requires that states provide public education for children with
disabilities, ages 3 to 21, no matter how severe the disabilities, unless state
law or practice does not provide these public school services for any children
ages 3 to 5 or 18 to 21. This law, like its earlier version, Public Law 94-142, re-
quires that children with disabilities be educated in the least restrictive envi-
ronment (LRE), which means in the setting most like the local school that
he or she would have attended if not for the disability (see table 7).
Services provided under Part C of IDEA, the Infants and Toddlers with
Disabilities program, serving children ages birth to 3, must be provided in
natural environments which include the home and community settings in
which children without disabilities participate. The law also requires that
early intervention services necessary to meet the unique needs of the infant
Table 7 Features of the Individuals with Disabilities Education Act (IDEA)

Free and appropriate education is to be provided to all children, regardless of how severely
they are disabled
As much as possible, children with disabilities must be educated in settings with children who
do not have disabilities
Age limits are established for children to receive educational services
Services the child will receive must be deWned
Mechanisms by which this program must be carried out are stipulated
Mechanisms for conXict resolution between parent and professional are in place
or toddler and the family, including frequency, intensity, and the method of
delivering services also be included in the statement of natural environments
in which early intervention services shall be provided.
What is the deW- The regulations for IDEA identify these disabling conditions:
nition in these 1. “mental retardation, hearing impairment (including deafness), speech
laws of a child or language impairments, visual impairments (including blindness), serious
with a disability? emotional disturbance, orthopedic impairments, autism, traumatic brain in-
jury, other health impairments, or speciWc learning disabilities and
2. who, by reason thereof, need special education and related services.”
What are the The Buckley Amendment (Public Law 93-380), also known as the Family
conWdentiality Educational Rights and Privacy Act (FERPA), gives parents of students un-
protections that der the age of 18 and students 18 and older access to the student’s educational
must be provided record. This law also provides parents and students with the right to review
to my child and the record and to receive a copy of it. They have the right to a full explana-
family? tion of the contents of the record. If they believe the record is inaccurate or
misleading, they can ask that it be changed. School personnel may not de-
stroy any part of the record if there is a pending request to review its con-
tents. If there is a disagreement about the record, then the parents must be
advised of their rights to a due process hearing. This might happen if the par-
ents requested that the record be changed and the school objected to chang-
ing it: in this case, the school must tell the parents that they have the right to
a due process hearing.
The schools have the right to release part of the record to certain other ed-
ucation and social service agencies without parental permission. A record of
all requests and a listing of the parts of the record that were released are in-
cluded in the student’s record. The schools are obligated under law to com-
municate with parents and students in their primary language, even if that
language is not English.
Certain school activities involving a special education student’s health in-
formation are required to be carried out in ways that protect conWdentiality
and comply with the Health Insurance Portability and Accountability Act
(HIPAA) of 1996. The extension of HIPAA to students requires schools to
ensure that safeguards are in place for the disclosure and electronic trans-
mission of “protected health information.” However, a student’s health in-

formation that is considered part of the oYcial education record of that stu-
dent and covered by the Family Education Rights and Privacy Act (FERPA)
is not “covered” by HIPAA. The U.S. Supreme Court decision in Falvo
(2002) provides further guidance by narrowing the deWnition of educational
records to those maintained by the school district or other school entity, ex-
tending FERPA protections only to those records. The conWdentiality rules
will vary based on whether the records are “educational” or not.
What other edu- One other such law is the Carl D. Perkins Vocational and Technical Educa-
cation laws apply tion Act of 1998, which provides funding for secondary and postsecondary
to children with vocational training while the students are still in school. Its purpose is to de-
CP? velop more fully the academic, vocational, and technical skills of secondary
students and postsecondary students.
In accordance with this law, vocational education programs and activities
must be organized in the least restrictive environment, and this activity must
be part of the Individualized Education Plan. This law gives students equal
access to a full range of programs available to nondisabled students, includ-
ing apprenticeship programs, career guidance and counseling, cooperative
education programs, and occupationally oriented courses of study.
What are the pro- This law (Public Law 99-457) provides services and related activities for chil-
visions of the Early dren of all ages with disabilities. Section 619 extends the law to ensure that
Intervention Act beginning at age 3, all children with disabilities receive a free, appropriate
of 1986? public education, including an Individualized Education Program plan, due
process, conWdentiality, and provision of services in the least restrictive en-
vironment. The services may be oVered in the home, or they may be center-
based. The child should have access to the same related services that are pro-
vided by IDEA: occupational therapy, physical therapy, speech therapy,
school health services, social work, and so on.
Check with your state department of education to learn about the pro-
grams available in your state. It may also be useful to contact other relevant
departments (public instruction, education, health, and social services) in
your state to Wnd out which agency is primarily responsible for implement-
ing the law.
Part H of Public Law 99-457 provides for early intervention services for
eligible infants and toddlers and their families. Eligible children will be those
from birth through age 2 who are developmentally delayed as deWned by an
individual state, who are at risk of developmental delay, or who have condi-
tions that frequently result in developmental delay. Contact your state’s de-
partments of education, public instruction, health, or social services to de-
termine what services in your state can be accessed under Part H of Public
Law 99-457.
What does the In 1986 Congress addressed the issue of parents’ recovery of attorney’s fees
“Lawyer’s Fees” for successful special education claims made under the IDEA. The “Lawyer’s
Bill of 1986 Fees” Bill of the Handicapped Children’s Protection Act provides that, in a
provide? legal dispute brought by the parents over special education placement, if the
parents win the suit, the courts may order the school district or the state to
pay the parents’ legal fees.
What about the These two compatible federal laws exist to prohibit discrimination against
Rehabilitation individuals with disabilities in employment programs or services if that
Act of 1973 (section individual is otherwise qualiWed to participate. Section 504 provides that
504) and the “no . . . qualiWed individual [with a disability] . . . shall, solely by reason
Americans with of his [disability], be excluded from participation in, be denied the beneWts
Disabilities Act of of, or be subjected to discrimination under any program or activity receiv-
1990? ing . . . federal Wnancial assistance.” Under both acts, a person with a dis-
ability is deWned as any person with a physical or mental impairment which
substantially limits one or more major life activities. Discrimination against
such a person is prohibited by any group or activities receiving federal funds.
These include programs and activities that provide vocational training or
education, public and private colleges, public and private day care centers,
preschool programs, public and private elementary schools, and public and
private adult programs. Employers and service providers must make an eVort
to make their services, facilities, and programs accessible to individuals with
disabilities.
The Americans with Disabilities Act guarantees equal access to individu-
als with disabilities in transportation, public accommodations, state and lo-
cal government services, employment, and telecommunications. Employers
must provide reasonable accommodations to individuals with disabilities,
such as restructuring or modifying jobs or equipment, as long as those ac-
commodations do not impose undue hardship on the company. Public trans-
portation must be accessible to people with disabilities. Special transporta-
tion services must be made available to those who cannot use Wxed route bus
transit, unless this poses an undue burden for public transportation.
Private establishments like restaurants, stores, and hotels cannot discrim-
inate. Physical barriers to access must be removed or another means of ac-
cess must be arranged. (This means that these establishments must install
ramps for wheelchairs, doors wide enough to accommodate wheelchairs,
bathrooms that can accommodate wheelchairs, elevators with buttons in
What are the Braille, and so on, unless to do so imposes an unusual economic hardship.)
implications of the All new construction must be accessible.
“No Child Left
Behind Act” for Although not speciWcally designed for special education, the federal No
children in special Child Left Behind Law (NCLB) of 2001 contains several items that are rele-
education? vant to children with cerebral palsy who are in need of adapted or specialized
instruction. No Child Left Behind represents comprehensive national edu-

cation legislation that intends to improve school accountability for achieve-
ment and safety, and to provide school performance information and some
increased control to parents. It directs states to create grade-level standards
for what students should know, and requires testing of that progress an-
nually in grades three to eight, and again in grade ten. Consistent with re-
quirements of IDEA reauthorized in 1997, states are required to include
students with disabilities in regular assessments. Beginning in July 2000,
students unable to take part in a state’s regular assessment with accommo-
dations are to be provided alternative assessments. NCLB builds on IDEA
1997 and requires that the assessment scores of all students with disabilities
be included in the state accountability system, including the scores of alter-
nate assessments.
Current law allows students with disabilities to be assessed in several
ways. They may take part in the regular testing, with or without accommo-
dations. They may also take an alternate assessment that is aligned either
with grade level achievement standards or with alternate achievement stan-
dards. Determination of whether a special education student participates in
the standard or alternative testing rests with the student’s IEP team. With-
out the demonstration of “Adequate Yearly Progress” at the local school
level, funding will be adjusted and in some cases, parents may be given the
opportunity to change schools or access tutoring assistance for under-
achieving students.
What types of Children with special needs attend many diVerent kinds of schools. Some
schools do children schools have a typical 9-month program, while others oVer an extended
with special needs school year (ESY) program to eligible students. There are schools speciWc to
attend? the child’s disability, such as schools for the hearing impaired or orthopedi-
cally handicapped. Many children attend regular schools, where they are
“included or mainstreamed” in a classroom with children who don’t have
special needs. The child with a disability may or may not have an aide in the
regular classroom.
There are also regular schools where children receive their instruction in
a self-contained classroom for children with disabilities. Alternatively, some
children are instructed part-time in the learning-disabled classroom and re-
ceive various necessary therapies during the school day, but are included for
selected learning situations, such as music or social studies. Children with
very mild physical disability may only be separated from their peers for an
adaptive physical education class.
The type of school situation in which a child does best is dependent on
many factors, including the child’s disability, the available services, the child’s
IEP, and, in some circumstances, the parent’s advocacy. In order to deter-
mine where your child will go to school and what kind of services he or she
will have access to, an assessment of your child’s development and abilities
must be made.
What should I do You will need to arrange to have your child assessed to determine what kind
if I think my child of help she or he needs. Sometimes the parents aren’t aware of their child’s
has special needs? needs, or they don’t realize that the school system can provide special ser-
vices; in these cases the school, or an individual teacher at the school, may
ask that the child have an assessment.
In short, there are three ways that a child can be identiWed for an as-
sessment:
1. Parents can request an assessment.
2. If your child is in school, the school may ask parental permission to as-
sess a child based on a screening.
3. An individual teacher who knows your child well may ask for an as-
sessment.
What is an An assessment involves gathering information about your child and his de-
assessment? velopment. It generally includes determining what kind of help your child
needs. Information comes from a variety of sources: parents, the assessment
team, the child’s doctors and medical history, and reports and results from
developmental tests. This assessment forms the basis for the Individualized
Education Plan, the written document describing the child’s needs, as well
as the services that are to be provided to the child.
Who does the An assessment may be performed by a team of professionals that includes a
assessment? special education teacher, an occupational therapist, a physical therapist, a
speech and language specialist, medical specialists, and a psychologist. In-
dividual state policies determine what types of professionals make up the
team. To perform the assessment, these professionals observe and test the
child, and determine her strengths and weaknesses.
Who should I con- You can call your local elementary school or school district oYce and ask for
tact for informa- the contact person who is in charge of these services. Or you can obtain a
tion on early copy of the resource sheet for your state that is available through the Na-
intervention pro- tional Dissemination Center for Children with Disabilities. This document
grams and special will tell you who the appropriate contact person is in your state’s education
education department. Write to NICHCY at P.O. Box 1492, Washington, D.C. 20013-
programs? 1492, or call 1-800-695-0285.
What is Child Child Find is a service, oVered by many states, under the direction of the
Find? state’s education department. (In some states, it exists under other names.)
Its mission is to identify and diagnose unserved children with disabilities.
Child Find makes a special eVort to identify children from birth to 6 years,
but they are interested in identifying all unserved children. Anyone residing
in a school district can request Child Find screening. Criteria for determin-
ing who is screened and at what age are determined by each district.
What are early These are programs designed to identify and treat a developmental problem
intervention as soon as possible. Once it has been determined that your child is eligible
services? for early intervention services, you will be assigned a case manager who will
help develop an Individualized Family Service Plan (IFSP). The IFSP de-
scribes the services the child will receive, when and where he will receive these
services, and how his progress will be evaluated. The case manager is in-
volved with your family until your child reaches 2 years of age. The case
manager then helps you move on to programs for children ages 3 through 5.
What does free This provision, originally from Public Law 99-142 and now in IDEA, means
and appropriate that special and related services are provided at all educational levels: pre-
public education school, elementary, and secondary. These services are oVered free to children
mean? because they are provided under the state education agency and are funded
with public monies. This education must meet the needs of the child as iden-
tiWed by the IEP.
How are related Related service needs are identiWed during the evaluation process of the
services obtained? child with special needs. The IEP will identify the related services needed for
the student. The IEP serves as a written commitment for the delivery of ser-
vices to the child with special needs.
What happens if I If the school determines that your child does not need certain services and
don’t agree with you think she does, you can appeal the decision of the team. If you choose
my child’s IEP? to appeal the IEP, be certain to get some professional advice on how to
proceed.
Who should I con- Get in touch with NICHCY and ask for information on the Parent Training
tact for help? and Information (PTI) centers in your state. The Parent Training and Infor-
mation Center is a federally funded agency that provides parents with the
knowledge and know-how needed to become partners in their child’s edu-
cation. It can provide you with the information you need to go through the
appeal process if that becomes necessary.
Can I get an You can always obtain an independent evaluation of your child. Sometimes
independent eval- the school agrees that there is a need for a second opinion and sets up the
uation of my evaluation. If the arrangements are made through the school, the school
child’s abilities pays for the independent evaluation. If you wish to make the appointment
and strengths? and seek the second opinion independently, you will be required to pay
for it.
In any case, the school district must provide you with names of other
professionals who can provide the assessment. Parent groups are good re-
sources for information and for recommending specialists, too. Local hos-
pitals often have specialists on staV who get together as a team to provide
assessments.
What happens at The people who evaluated your child explain their Wndings, what tests they
an IEP meeting? used, and the scores your child achieved. You share your observations about
your child with these specialists. You may want to ask for the testing results
before the meeting to give you time to review them and plan ahead. On the
basis of this meeting the IEP is developed, and you are asked to sign it. The
plan lays out exactly what the school intends to do during the school year.
And every year after that, the school must schedule a meeting with you to re-
view your child’s progress and to develop the next year’s IEP.
What is included Included in the IEP are statements of annual goals, short-term objectives,
in the IEP? and speciWc special education and related services, in addition to an expla-
nation of who will provide the services. Additional statements about what
percentage of time the child will participate in regular educational programs,
target dates for the initiation and duration of special services, and criteria for
evaluation, which will measure progress, are included.
What if I’m not The law and regulations governing the development of the IEP require
able to attend the that a meeting of the parents and professionals be held at a mutually con-
IEP meeting? venient time. Every eVort should be made to work out a schedule. Some-
times meetings are planned for after school hours, but typically a meeting
can be planned during school hours at a mutually agreed-upon time.
Is there anyone There are federally supported programs in each state that support parent-
who can help me to-parent information and training activities for parents of children with
understand all of special needs. The Parent Training and Information Projects conduct work-
this? shops, publish newsletters, and answer questions by phone or mail about
parent-to-parent activities. They are very helpful in evaluating the educa-
tional system in your state. Contact NICHCY and ask for the listing of the
Parent Training and Information Centers’ federally funded parent programs.
Will these laws To a great extent, the basic emphases of these laws have stayed the same for
and rules change the past 20 years, though the laws may be interpreted diVerently from state
over time? to state. However, because IDEA needs to be periodically reauthorized, var-
ious groups lobby lawmakers for changes in these laws. SpeciWc provisions
requested by school districts or others advocated by parent groups may be
introduced at these times, and parent support groups will likely know which
of these provisions might weaken the law to the detriment of children. Since
these groups cannot lobby lawmakers, it is up to parents and other individ-
ual citizens to do so.
What can I do to Keep in touch. Join parent support groups, where information is shared.
keep abreast of Get on the mailing list for NICHCY and the United Cerebral Palsy Associ-
issues? ations (UCPA). Contact NICHCY for information on Federally Funded
Parent Programs. These programs provide information and training to en-
able parents of children with disabling conditions to participate more knowl-
edgeably in their child’s care. Phone the school districts and the Develop-
mental Disabilities Council in your area and ask for information.
Being an
Advocate for
Your Child:
Using the
12
Legal
System
♦ F O R M A N Y P E O P L E , any discussion of the legal system

evokes images of complicated procedures and tense courtroom scenes. High
costs also come immediately to mind. Although it’s true that the legal sys-
tem can be confusing and even intimidating, this is not necessarily so in the
area of the rights of the disabled. People with disabilities, their family mem-
bers, and their advocates can eVectively, inexpensively, and easily use the law
to obtain services and beneWts.
A series of lawsuits in recent years has served to raise society’s level of
awareness about the lack of services available to people with disabilities. Leg-
islatures, both state and federal, have responded by passing broad-ranging
laws recognizing that people with disabilities have the right to be fully inte-
grated into U.S. society. These laws, which are administered by federal, state,
and local agencies, go a long way toward ensuring fair and equal treatment,
and they make it easier for people with disabilities and their advocates to
obtain services. The people who staV these agencies are generally conscien-
tious; nevertheless, bureaucracy and budget concerns sometimes interfere
with the process. As a result, some individuals with disabilities are wrongly
denied services to which they are entitled. For this reason, it is important
for people with disabilities and those who advocate for them to understand
what the law requires as well as how to go about obtaining rights under
the law.
To be an advocate, or champion, for the rights of the individual with dis-
abilities, a person must be willing to learn what the individual’s rights are,
understand how the system works, and use the system to obtain maximum
beneWts. Although most people think only of lawyers when they think of
advocates, there are in fact many diVerent types of advocates. We begin this
chapter with a description of the various kinds of advocates who may be
helpful to you and your child. The rest of the chapter then takes up speciWc
issues pertaining to the law as it applies to people with disabilities. Other
legal assistance agencies are listed in the Resources section at the end of
this book.
270 ♦ using the legal system
The legal advocate, or lawyer. We usually think of a lawyer when we

think of a professional advocate representing the child or parent in litigation,
and there’s no question that employing a lawyer trained in handling disabil-
ity cases is generally a wise decision. Whether it is or is not essential to obtain
the services of a lawyer is often determined by the speciWc problem that
needs to be addressed. If there are complicated legal issues with respect to
educational requirements, or if parents need to write a will that provides for
the survivor with a disability, then parents need to consult a lawyer special-
ized in these areas. Your family’s general practice lawyer can usually refer you
to a lawyer who specializes in disability cases. In addition, agencies such as
the United Cerebral Palsy Associations (UCPA), school districts, legal ser-
vice agencies, and social workers can provide referrals to lawyers who spe-
cialize in this area of the law. Bar associations also oVer lawyer referral ser-
vices to the public.
The legal system overall is moving toward alternative disposition resolu-
tion (ADR), in which mediation and arbitration are commonplace options.
For example, the IDEA regulations require states to oVer mediation to re-
solve special education disputes. Such alternatives may be less expensive and
intimidating options for parents to pursue.
Protection & advocacy (P&A) agencies. Every state has a P&A
agency which provides advocacy and legal services to persons with disabili-
ties, usually for free. The National Association of Protection and Advocacy
Systems (NAPAS) has background information and links to all state P&As
on its Web site at www.napas.org. The P&A system has been expanding since
its inception in the mid-1970s to include a number of discrete programs. The
primary programs that would be of most interest to persons with CP would
be those earmarked for developmental disabilities (PADD) and assistive tech-
nology (PAAT). P&As engage in a wide variety of advocacy, including sys-
temic litigation, individual litigation, legislative and regulatory advocacy,
and provision of information and referral services.
The parent as advocate. As noted above, a lawyer is not the only ad-
vocate who can beneWt your child. It is a fact that the most important advo-
cates for most children are their parents. To be an eVective advocate, a parent
needs to become very well informed about the laws pertaining to disability
as well as about how the system works. A good place to begin is to obtain a
set of your state’s regulations, copies of which are usually available at no or
low cost. You should also read publications on self-advocacy, which are avail-
able in bookstores and libraries. It is virtually impossible to be an eVective
advocate without knowing the rules of the game. The scope of beneWts par-
ents obtain from the government and insurance companies may be directly
related to how aggressively the parents advocate on behalf of their child.
Because the parent is not only the child’s advocate but also the child’s
caregiver, the parent must be aware of two risks involved in serving as the
using the legal system ♦ 271
child’s advocate. First, advocacy can become a full-time occupation in its

own right. Second, parents can become overwhelmed with the time com-
mitment and begin to feel that more gains could be made if more time was
spent—and their commitment, though well intentioned, may eat into the
time they have available to spend in their other role, parenting their child (or
children). Parents should only spend as much time in their role as advocates
as they are comfortable with, and then accept that they do not have to do
everything.
Being an assertive advocate also requires a certain personality, someone
who is willing to confront others and to be in the public eye. Parents who
simply cannot manage this type of advocacy should seek help from other
advocates and not feel guilty about doing so. Joining local councils (such as
developmental disabilities councils and special educational councils) and
local branches of national organizations (such as UCPA), can be very help-
ful for parents who cannot serve as their own child’s primary advocate but
who can nevertheless contribute time and eVort to advocacy groups. Each
state has a DD council that serves as a systemic advocate for persons with de-
velopmental disabilities. Check the National Association of Councils on De-
velopmental Disabilities Web site at www.nacdd.org, which has a link to
councils in individual states. A list of councils in all 50 states is provided. Spe-
cial education councils are required by the IDEA regulations. Participation
in such councils provides an opportunity to network and receive free train-
ing. Such organizations provide valuable information, and the collective
power they wield is often impressive.
The citizen advocate. A citizen advocate is someone with experience
or training who is willing to become a child’s advocate on a voluntary basis.
Many communities have a citizen’s advocacy board, often organized by
parents to help provide this type of service. Alternatively, the local chapters
of nonproWt organizations, such as UCPA or the Epilepsy Foundation of
America, may oVer citizen advocacy. Many of these volunteers have gained
a great deal of experience by working with other children with disabilities
and can be very eVective in obtaining services and providing parents with a
sense that the right services are being provided for their child.
The press as advocate. Newscasters and columnists are often inter-
ested in “human interest” stories and can be very eVective in helping to ob-
tain services for a child. It is important to provide members of the press with
your story in a manner that gives them the facts but also conveys the emo-
tional impact of your situation. It is not a good idea to write a letter to
the newspaper that consists solely of a personal attack on those who have
thwarted your attempts to get help for your child. Instead, provide a docu-
mented history of your phone calls, the responses or lack of responses, and
the eVect of the problem on your family. Do not lie or exaggerate. Consider
whether it is a good idea to include personal names; the better approach is
generally to use generic terms, and to identify the person only by a position
or title (“a staV member,” for example). Let the press know that you are avail-
able for a personal interview. Make copies of the letter you send to the press
and send them to all the individuals who have been giving you the run-
around. Consider writing a letter to the editor of your local newspaper or or-
ganizing a group of parents to write to the editor about an issue of broad in-
terest that aVects many children or adults with disabilities.
The case manager advocate. A case manager is usually a trained nurse
or social worker who is employed by an agency or an insurance company.
State social service agencies may provide a case manager to help a parent
negotiate a complicated medical problem. NonproWt organizations such as
UCPA and the Easter Seal Society, as well as many private charities, will also
fund case managers to provide these same beneWts to the child and the par-
ents. There are also volunteer case managers with specialized training in this
area. In order to assess how eVective the case manager will be—how strong
an advocate he or she will be for your child—you must Wrst know who the
case manager’s employer is and the reason the case manager was assigned to
your child.
Case manager advocates employed by insurance companies are becoming
much more popular. These individuals can coordinate care and make sure
that resources are used eVectively. It is important to remember, however,
that these individuals are employed by insurance companies whose under-
lying goal is to minimize the cost of care and thereby improve the proWt mar-
gin. In spite of this potential conXict of interest, these individuals can be very
helpful to parents, especially in directing them in methods of using the com-
plicated and often fragmented medical care system.
Parents may want to obtain the written standards that describe the case
manager’s duties. This should be public information if the case manager is a
government employee or contractor. Since caseloads are often excessive,
case managers may not uniformly oVer all services to which the parent may
be entitled. If the parent has the policy in hand, he will be able to “prompt”
the case manager to oVer the entire range of authorized services. The parent
may also wish to diplomatically request information on the availability of
grievance systems. Almost all social services agencies and insurers have at
least internal grievance systems, which may or may not be well advertised. If
the case manager knows that the parent is aware of the grievance system, the
case manager has an incentive to “aim to please.”
Child protection advocates. The government has a mandate to pro-
tect children from harm, including possible harm or neglect caused by par-
ents. All states have child protection laws requiring certain professionals
(such as doctors and teachers) and other individuals to report suspected
abuse. This suspected abuse is then investigated by child protection advocates
who issue a report announcing their Wndings in the case. A child protection
advocate may be assigned to monitor a child over a long period; in this sit-
uation, the advocate is usually a court-assigned individual. Such advocates
are for the most part dedicated and interested in the child’s welfare, and
many of them are well-trained professionals with extensive experience. Bud-
get concerns in many states have resulted in low pay for these individuals,
however, as well as extremely heavy caseloads. In some areas, poorly trained
individuals may be working in this capacity.
It’s important for parents to understand that if they are involved with
child protective service advocates, those advocates will primarily be consid-
ering the interests of the child; if there are allegations that the parents have
abused the child, then the parents may need their own advocate. This may
be one situation in which the parents’ attempt to advocate for the child may
need to be delegated to a professional.
Overall, federal law is clear on the point that these agencies should at-
tempt to prevent unnecessary separation of families. The goal of most child
protection advocates is not to remove children from the care of their parents
or to punish the parents, but to look out for the child’s best interests. Fami-
lies should be assertive about asking for support services that will beneWt the
child within the family unit. One method of guarding the child’s best inter-
ests is to identify problems or stress areas and help the family deal with these.
The goal, whenever possible, is to help the family solve problems and stay
together. If parents understand this as the primary goal and accept that the
child protection advocate is in fact attempting to look out for the child’s best
interests, then the alleged problems can often be resolved in a positive way.
Legislative advocate. Industry and large special interest groups have
long hired professional lobbyists to advocate for their interests. For people
with disabilities, however, the most eVective advocacy is usually done by
parents whose eVorts are directed to members of the legislature. For a par-
ent advocate to become an eVective legislative advocate, he or she must spend
some time learning the system. It is important not to be intimidated by
position and titles, since legislators are people like you who are looking to
please you and who are often very touched by personal stories. Most people
serving in government really do want to make life better for the people who
elected them and whom they are serving, and you should operate under the
assumption that they are interested in helping you.
You may directly contact either a state or a federal legislator and request
an appointment or opportunity to speak with him or her. Inviting a legisla-
tor to parents’ groups, to special school events, or to a camp for children
with disabilities may present an opportunity for advocacy in which the par-
ents and children don’t have to travel to where the legislature meets. And leg-
islators often welcome the chance to learn from seeing people in their own
environment and to have direct contact with those who make use of the ser-
vices of government agencies.
When you approach the legislator, present a speciWc problem that can be
addressed. It is very diYcult for a legislator to be helpful when he or she is
approached with general anger and frustration and comments such as “Life
is hard” and “No one is willing to help.” If this is how you feel, you should
Wrst work on defusing your anger and focusing your general frustration
by talking with other parents or professionals. Try to understand what your
speciWc problems are. Then, when you address your legislator, you can be
concise and thereby more eVective.
For example, suppose that your insurance company from your place of
employment claimed that they would cover the cost of medical goods and
orthotics, but when you went to purchase such items you were told they
would only cover one pair of braces in the child’s lifetime. Naturally, you are
frustrated. Upon further investigation you discover that although the insur-
ance company advertised that it would pay for braces, the small print of
the contract limited coverage to one pair during the child’s lifetime. Such a
ploy unfortunately is common. It is clear to everyone that one pair of braces
suitable for a child at 2 years of age is not going to last for a lifetime. You
may take this speciWc frustration to your legislator and ask him or her to in-
troduce a bill that would make it illegal for insurance companies to use this
type of deceptive advertising. Legislators are likely to be receptive to this
type of speciWc request, and they can, in fact, initiate legislation to bring
about a change in the law. This mechanism has been utilized to pass many
laws—those providing access to public buildings, preventing discrimination
against people with disabilities in the workplace, and providing for special
education.
The Partners in Policymaking program originated in 1987 and is now
available in almost all states. It is an innovative leadership training program
for adults with disabilities and for parents of young children with develop-
mental disabilities. The program trains people to serve as eVective advocates,
including legislative advocates. There is an on-line course on how to com-
municate with public oYcials. An example of recent training topics in one
state included the following: (1) local, state, and federal policy and legisla-
tive issues; (2) how to meet public oYcials and give legislative testimony;
(3) community organizing; and (4) working with the media. Thus, the skills
one needs to advocate eVectively with elected oYcials can be learned through
this program or others like it.
Self-advocate. Probably the most eVective advocate, especially in the
legislative arena, is the self-advocate. Teaching the child, as he grows, to be
able to advocate for himself within his capability will provide him with a
powerful tool to carry throughout his life. You can begin by teaching your
child that he needs to be verbal about his needs and his abilities. For ex-
ample, an intelligent child with a speech disability needs to be taught that he
should be direct with strangers, explaining that having a speech disability
does not equal having mental retardation. As children become older and
start driving, they can learn to advocate for their rights to disabled parking;
and they can advocate for access to public buildings.
Many adults with disabilities Wnd that they have periods in which they
grow tired of constantly having to advocate for themselves and for other
people with disabilities. But this is almost universally recognized as a neces-
sary part of functioning in society. Teaching children this lesson in a gentle
and socially acceptable way is important. An increasing number of programs
teach children and young adults with disabilities to be self-advocates. Some
DD councils oVer such programs, as do local chapters of private agencies,
such as UCP. The Partners in Policymaking program mentioned earlier also
teaches self-advocacy skills.
What is Guardianship is the legal means by which a person is appointed to act on

guardianship? behalf of an individual who is incompetent, and to protect that person.
Guardianship is regulated by state law, which varies from state to state. In all
states, however, guardianship of a minor child is automatically given to the
birth parents until the child is legally considered an adult, at either age 18 or
age 21, depending on the state. At the age of adulthood, the person auto-
matically becomes his own guardian unless guardianship is speciWcally as-
signed to another person.
An adult needs to have a guardian appointed if he or she is unable to man-
age Wnancial aVairs, make decisions concerning medical care, or direct or
plan activities of daily living. Because the birth parents’ guardianship is au-
tomatically terminated at the age of adulthood, they must petition the court
to continue in that role. Even in situations where an adult is obviously un-
able to participate in or manage his or her own aVairs, and guardianship as-
signment is fairly straightforward, the court must still be petitioned. SpeciWc
local mechanisms are diVerent; ask a social service professional or your fam-
ily lawyer for information about how to proceed.
Often the level of competency of the child or young adult is not clear-cut,
and in these situations a guardian should be appointed with care. Appoint-
ing a guardian removes signiWcant civil rights from the individual. Although
this varies from state to state, guardianship often severely restricts an indi-
vidual’s ability to manage his own money, makes marriage illegal without
the consent of the guardian, and eliminates voting rights. For these reasons,
the appointment of a guardian in a borderline situation should involve care-
ful consultation with the social service professionals and lawyers familiar
with this issue. Because of the serious implications of guardianship, the
court often appoints an attorney to represent the individual independently
of parents and others.
A person with a mental disability or mild mental retardation does not au-
tomatically need guardianship. The issue of mental competence also varies
with situations and circumstances and can change over time. States have in-
creasingly recognized that there are gradations of competency, and most

states have assigned three levels of competency: full competence, partial
competence in speciWc areas, and complete incompetence. In the past, indi-
viduals were considered to be either fully competent or fully incompetent.
Now, in situations in which the level of competence is uncertain, a full eval-
uation by a professional with expertise in this area is strongly recommended.
There are also alternatives to guardianship. For example, in lieu of ap-
pointment of a guardian of the property, there are corporate bill-paying ser-
vices that will, for a small fee, manage a consumer’s funds. Another option
available in approximately half the states is an AARP-sponsored money man-
agement assistance program. States may also oVer bill-paying assistance as
part of an attendant services program. Finally, if the individual with a dis-
ability has the capacity to sign a power of attorney, the individual may ap-
point a relative or friend to deal with Wnancial matters.
What types of There are diVerent types of guardianship in most states, with the major types
guardianships are being either plenary guardianship, which involves complete and full control
there? of the individual, or limited guardianship, which only applies under speciWc
circumstances. The birth parent is a plenary guardian who can in many situ-
ations continue to serve in the same role even after the child has reached the
age of maturity.
For individuals who may be able to manage some of their aVairs, limited
guardianship in speciWc areas should be considered. Financial and estate
guardians are examples of limited guardianships.
A Wnancial guardian may be appointed to help an individual manage
his or her funds, which includes paying rent and dispersing income, such
as SSI or SSDI payments. A guardianship of the estate is usually appointed
for individuals who have signiWcant resources, such as property or income-
producing investments. The guardian of the estate is also appointed by the
court, which usually requires the guardian to be bonded and to operate un-
der strict rules, limiting the types of investments that may be made to only
low-risk investments.
There are also diVerent mechanisms of guardianship (table 8). The
most common way for someone to become a guardian is to Wle a petition.
For example, a parent may petition to be named guardian for an adult son
or daughter.
Table 8 How Do You Become a Guardian?

By Wling a petition with the court asking to be named guardian
By being named guardian in a person’s will (testamentary guardian) and having it approved
by the court
By being appointed by the court
By assuming collective corporate guardianship
By being appointed by the state as a public guardian
Because of the signiWcant powers a guardian may have, parents may wish
to name someone who will become their child’s guardian after their death.
This provision can be made in the parents’ wills, when the parents specify a
desired guardian. Court approval will still be needed, but the court will
generally defer to the “nomination” of the guardian, though it can reject
the recommendation for cause. We suggest that parents give this matter
considerable thought and discuss with the proposed guardian the concept of
a guardianship and what actions the parents would like to see taken. If a
guardian was not named in a parent’s will, the court may select a consenting
relative, or even an unrelated person or agency as guardian. Because of the
potential for a conXict of interest, and because diVerent people have diVer-
ent strengths, parents may wish to consider naming one person as guardian
of the individual and another person as guardian of the estate.
The collective corporate guardianship is a mechanism by which a non-
proWt organization is established to be guardian of a number of people. This
is often set up by parents of individuals with disabilities and allows individ-
uals with limited Wnancial resources to have a Wnancial guardian with some
professional training appointed for them. Regional associations for people
with mental retardation have established a number of these collective cor-
porate guardianships.
Typically, public guardians are appointed by the state in the event of a par-
ent’s or parents’ death that leaves the child or incompetent adult without a
caretaker. These public guardians are usually social workers or a state or lo-
cal agency. The individual may reside in a foster home or other supported
living arrangement. Public guardians are professional individuals with train-
ing who have a keen interest in doing what is best for the person in question;
however, they deal with a very large caseload and consequently have ex-
tremely limited opportunities to get to know any one individual.
Who will make People who serve as guardians take on a very serious and large responsibil-
the best guardian ity. To handle it well, they need to be personally familiar with the individual
if one is needed? they are overseeing, understand the individual’s condition and medical prob-
lems, understand the individual’s family values, and be aware of all special
needs. Parents, as long as they are able, usually serve this function best. Be-
cause of the large responsibility, if parents are no longer able to be an indi-
vidual’s guardian, it may be better to split guardianship into one guardian
for the person and another for the estate, or to use a structure such as a col-
lective corporate guardianship. These concerns need to be discussed with
professionals familiar with the family and the individual in need.
What is the role of Guardians can do almost anything for the person with a disability that that
a guardian? person would do for herself, if she could. The plenary guardian exercises full
rights for the individual and all of the individual’s assets as outlined by the
law of the state. Once a guardian is appointed, he or she must Wle a report
with the state at some predetermined frequency. Some states require that
guardians be bonded. One of the important areas of guardianship is to give
consent for care, education, and medical treatment for the individual over
whom they are placed. There are three types of consent.
Direct consent is that consent given by the individual who will be treated.
Substitute consent is given by the guardian of the individual. Concurrent con-
sent is a combination of consent by the guardian and consent by the patient.
Professionals may use concurrent consent in a situation in which an indi-
vidual’s mental competency is uncertain or hasn’t been determined. For ex-
ample, when an individual with moderate mental retardation wishes to
take birth control pills, the individual may be asked to give her consent, and
the parents may also be asked to give their consent, before a prescription is
written. If the parent has been given legal guardianship of the individual,
then the individual may not give consent but can still give assent. (Assent is
the legal term by which a person who has been determined to be incompe-
tent by the court or who is not of an age of competency agrees to a treatment
or a procedure in addition to the consent of the legal guardian. This ap-
proach may also be used for treatment given to teenagers who are not of le-
gal age to give consent, but who are certainly very involved in their own
treatment plan.)
Giving consent for medical treatment, especially for surgical procedures,
is often a very diYcult and serious concern for parents. Guardians of adults
have the same concerns, since it may be very diYcult to determine what is in
the individual’s best interests. This is especially true for procedures that in-
volve signiWcant risks or procedures that make signiWcant changes in the per-
son’s body.
The courts have placed limitations on a guardian’s ability to give con-
sent for another individual, especially in the area of birth control. In general,
guardians may not give consent for irreversible birth control methods, such
as tubal ligation, removal of ovaries, or hysterectomies, unless that treatment
is needed to correct a pathological process and is not being done for birth
control purposes only. Guardians can give consent for reversible birth con-
trol mechanisms such as birth control pills or injections.
What are the There was a time when placement in an institution such as a nursing home
caretaking options was the only alternative to living at home for disabled children and adults.
when parents can- Today, however, most persons (especially children) with chronic disabilities
not care for the are not in institutions. The Supreme Court’s Olmstead decision in 1999
child at home? accelerated the movement toward community placements. Based on the
Americans with Disabilities Act (ADA) of 1990, this decision mandates that
individuals with disabilities live in the most integrated setting that is appro-
priate for their needs. Under the court’s decision, states are required to pro-
vide community-based services for persons with disabilities.
Based on this ruling, states have moved to expand home- and community-
based services, including small group homes and family support. Funding
for community-based service is available to states under the Medicaid home-
and community-based services waiver. The waiver, which refers to “waiving”
Medicaid’s previous requirement of funding care only in institutions, is
designed to provide services in the community as an alternative to institu-
tionalization. Typically, the individual must have a qualifying disability, meet
a level of care standard, and require certain support services. Such services
can include case management, homemaker assistance, home health aides,
personal care, respite care, transportation, physical or occupational therapy,
and others.
SpeciWc to children is the “Katie Beckett” waiver, adopted by Medicaid
programs in most states. Essentially, states have the option of providing
Medicaid to children (up to their 19th birthday) with signiWcant disabilities
regardless of parental income and resources. Children must meet an SSI
standard of disability and level of care standards. The parents can then tap
home health, private duty nursing, therapy services, and so on to support the
child at home.
Another alternative to institutional placement is placement with another
family. This could be placement with extended family members, such as
grandparents, or with an adoptive or foster family. In most situations, the
parent continues to be the personal guardian, which means that the parent
has to give consent for medical treatment, such as surgical procedures. Chil-
dren who are in foster care may go to the parental home on weekends, holi-
days, or special occasions, depending on the parent’s ability and willingness
to be involved. This type of complicated caretaker arrangement needs to be
carefully worked out among the various parties, with everyone, including
the involved parent, understanding what’s involved.
Permanency is the philosophy and practice of securing permanent fam-
ily placement for all children, including those with special needs. Healthy
People 2010 (published by the U.S. Department of Health and Human Ser-
vices) includes a goal of having no child or young adult (up to age 21) with
special health care needs living in congregate or institutional care by 2010.
Statistically, the number of children living with grandparents and other non-
parent caregivers has been increasing. Federally funded programs are avail-
able in all states, which may provide support services to such caregivers.
When it comes to foster care, in addition to legal and Wnancial consider-
ations, there are often signiWcant psychological and emotional implications
for the parents. When another family is able to take their child into their
home, the parents may feel that they have failed in caring for their own child.
This is one of the reasons many parents resist foster care placement and of-
ten prefer to see the child placed in a group home or institution. Counseling
for the parents may help them understand that foster care placement does
not mean that they are failures, but that each person and family has certain
strengths. It sometimes helps parents when they recognize that foster care
parents are paid a salary, and it is therefore their job to care for children with
disabilities.
Are guardianship Adoption is a legal procedure in which an adult becomes a legal parent and
issues diVerent for has the same relationship to a minor child as do birth parents. The adoption
adoptive parents laws with respect to children with disabilities may, however, diVer some-
than for birth what from the laws pertaining to children without disabilities. Because the
parents? laws vary signiWcantly from state to state, we strongly recommend that you
consult a general practice lawyer or a professional with expertise in this area
if you are considering adopting or have recently become the adoptive parent
of a child with a disability.
Prospective adoptive parents and their lawyer need to look into what ben-
eWts the child will receive before and after adoption. In the past, it was com-
mon for the adopted child, regardless of disability, to be treated exactly as a
biological child, so that the parents’ income had to be included in all means-
testing federal and state programs, such as SSI and Medicaid. (“Means test-
ing” is a system of determining eligibility for Wnancial assistance that is based
on parental income and other Wnancial resources.) Because of this law and
the costs involved in raising children with disabilities, in the past many chil-
dren with disabilities were not adopted and remained wards of the state.
The trend in many states recently has been to change the laws so that chil-
dren with disabilities continue to be eligible for all the programs they were
eligible for prior to the adoption, such as SSI and Medicaid, without means
testing based on the adoptive parents’ income. This area should be investi-
gated and considered prior to going through with an adoption. As noted,
because of the laws in some states, it’s possible that a person may be better
able to provide care for a child with a disability if he or she remains in the
foster parent role, rather than becoming an adoptive parent. However, the
disadvantage is that the child could be taken out of her foster home by
the state agency, even if a strong emotional bond has developed between
the child and the foster family, whereas an adopted child is part of her fam-
ily permanently.
There are also adoption assistance programs, which vary from state to
state, whereby individuals are given cash beneWts as well as medical assis-
tance and social services when adopting a child with special needs.
For instance, adoptive parents of a special needs child may be eligible for
a one-time payment of adoption expenses incurred in connection with
adoption of the child, such as attorney fees, court costs, and other expenses
directly related to the adoption. A portion of adoption expenses may be tax
deductible.
There are also federal and state subsidy programs, in addition to tax in-
centives, for special needs adoptions. The federal Title IV-E adoption assis-
tance program provides monthly Wnancial assistance to parents of eligible
children to help meet any of the child’s needs. The automatic Medicaid cov-
erage available through this program is “worth its weight in gold,” since
medical costs may be extremely burdensome and most private health insur-
ance is oriented toward acute care and not toward treating developmental
disabilities. To be eligible for this program, the child needs to have been eli-
gible for SSI before adoption. Adoptive parents do not have to meet any
Wnancial eligibility criteria to receive assistance through this program. For
children who are not eligible for Title IV-E assistance, there are state adop-
tion subsidy programs. These may cover medical expenses, living expenses,
and special or extraordinary expenses incurred by the adopted child. See the
Resources section for more information.
How do guard- There may be an option for a long-term foster parent to obtain complete
ianship concerns guardianship of a child. Most foster parents, especially those with short-
relate to foster term placement, are given only custodial rights over the person with a dis-
parents? ability; these rights enable them to provide care for the child or older person,
usually in conjunction with a state-assigned professional child care worker
or child advocate. But, because the role and rights of the foster parent can
range from complete guardianship to short-term physical care of the person,
the prospective foster parent must fully understand the extent of his or her
rights regarding the child’s care.
The speciWc level of responsibility should be put in writing, so that when
the child is brought for medical care or other emergencies, health care pro-
fessionals are aware of the legal custody situation of the child. It is not suY-
cient for the foster parent to say that he or she has complete guardianship;
the foster parent must present a court-authorized document. Like foster par-
ents, older siblings, grandparents, and aunts or uncles who care for a child
with CP must obtain guardianship through a court order. Documentation
of this order should always be available when guardians other than the birth
parents are securing medical care. If children receive most of their medical
attention at one facility, a copy of this authorization should be included in
the child’s medical chart.
Is adult foster care The trend recently has been toward encouraging adult foster care, in which
diVerent from fos- a family takes one or two adults with disabilities into their home and cares
ter care of a minor for them in the same way that another family does foster children. The issues
child? of guardianship in this situation, however, are not changed from those of
other adult situations. What’s essential is for the areas of guardianship to be
deWned and assigned by the court—and then recorded in a legal document.
What other living The current view is that individuals with disabilities, just like all other people,
arrangements are prefer autonomy and self-directed services. This view is reXected in atten-
being developed? dant services programs in which the disabled person is given public funds to
hire support workers, who they can then hire and Wre. There is also a grow-
ing “home of your own” movement in which parents may join to purchase
a group home for 3 to 4 adult children with disabilities. The state provides
support services but does not own the home.
What other legal Over the past few decades, laws have been passed that signiWcantly aVect
concerns do people people with major disabilities. These laws have for the most part arisen
with cerebral palsy from an increased awareness by the general population that people with dis-
have? abilities should be incorporated into the community as fully as other citi-
zens. Many laws have been passed regulating the educational setting for
children with disabilities, and similar laws have been passed for adults regu-
lating their access to public facilities and preventing discrimination in the
workplace.
How do the laws Although it is hard to believe, until the early 1950s, children with major dis-
aVect education abilities were often completely excluded from public education. In the 1950s
for the child with and 1960s there was a resurgence of interest in establishing special schools
cerebral palsy? that were locally operated exclusively for children with disabilities. Many
of these schools were segregated, so that children with visual handicaps, or-
thopedic handicaps, or major cognitive disabilities, for example, were taught
in schools that were separate even from each other. Many of these schools
were very large facilities, often understaVed and with few resources. Some
of these “schools” were, in fact, full-time boarding institutions, and little ed-
ucation took place there.
This situation was dramatically changed in 1975 with the adoption of
Public Law 94-142, also known as the Education for All Handicapped Chil-
dren Act. This federal law (and state laws that have been patterned after it)
is based on the dual principles of inclusion and integration of all children. In
terms of inclusion, the law requires that a free and appropriate education be
provided for all children, no matter how severe their disabling condition. In
terms of integration, the law requires that children with disabilities be edu-
cated in settings where they are integrated with children who do not have
disabilities to the maximum extent possible. This aspect of the law is known
as placing the child in the least restrictive setting and has resulted in remov-
ing many children from special schools and returning them to regular class-
room education.
The Education for All Handicapped Children Act (renamed the Individ-
uals with Disabilities Education Act) is an extensive and detailed law that
deWnes many of the aspects of the education to which children with cerebral
palsy are entitled. (Children with CP are not automatically eligible but must
meet speciWc criteria.) The law sets age limits for children who must receive
educational services; it deWnes which services the children must receive; it
deWnes a speciWc mechanism by which this program must be carried out,
including evaluations and written responses of which the parent must be
aware (the Individualized Education Program, or IEP); and it states what re-
lated services are required. There are also speciWc mechanisms for resolving
conXicts between parents and professionals, or between professionals who

hold diVering views. The full details of this act are discussed in Chapter 11.
What laws apply For adults, the workplace replaces the school as the main setting in which a
to adults with person interacts with others and society in general. Just as children with dis-
cerebral palsy? abilities formerly were segregated in the school setting, historically people
with disabilities were almost entirely excluded from employment opportu-
nities. Congress took the lead in prohibiting job discrimination against
persons with disabilities with the passage of Section 504 of the Rehabilita-
tion Act of 1973, which makes it illegal for agencies and institutions that re-
ceive federal funding to discriminate against persons with disabilities. After
extensive publicity and lobbying by numerous advocacy groups for indi-
viduals with disabilities, the job-related rights of these people were greatly
expanded with passage in 1990 of the Americans with Disabilities Act
(ADA) (table 9).
The employer cannot discriminate even in its advertisements. For ex-
ample, an employer may not advertise for “able-bodied” persons. Moreover,
the employer may be required to provide accommodations in the interview
and assessment process. For example, if a typing test were required for a sec-
retarial position and an applicant asked to use his adaptive keyboard, this
would be a reasonable accommodation. The employer could not insist that
the applicant use the standard keyboard used by all other applicants. While
in general terms, the laws relating to the workplace are primarily composed
of commands telling the employer what it may not do, there are exceptions.
For instance, Section 503 of the Rehabilitation Act includes an aYrmative ac-
tion obligation for employers with contracts with the federal government of
$10,000 or more. It requires that such companies contracting with the gov-
ernment “shall take aYrmative action to employ and advance in employ-
ment qualiWed individuals with disabilities.” Many large employers have
such contracts, and persons with disabilities may wish to focus eVorts on so-
What speciWc liciting employment with such Wrms.
restrictions are
provided for by the Part of the Americans with Disabilities Act incorporates concepts from Sec-
Americans with tion 504 of the Rehabilitation Act and speciWcally prohibits employment dis-
Disabilities Act? crimination against qualiWed people with disabilities in federally funded
Table 9 Features of the Americans with Disabilities Act

An employer must assess an individual with a disability applying for a job by the same criteria
used to evaluate an individual without a disability
An employer must make reasonable accommodation for the hired person
Employers must provide access to all public places
There can be no discrimination in public accommodations against persons with disabilities by
employers or businesses, or in public buildings
Life and health insurance companies cannot deny coverage based on an individual’s or a
family member’s disability
programs. SpeciWcally, the act states that “no otherwise qualiWed individual
with disabilities in the United States shall solely by reason of his disability be
excluded from the participation in, be denied the beneWts of, or be subjected
to discrimination under any program or activity receiving federal Wnancial
assistance.” Disabilities are fairly widely deWned as any limits an individual
has that impact on his or her “major life activities”—which include caring
for himself or herself, or performing tasks such as walking, seeing, hearing,
speaking, breathing, or learning.
The Americans with Disabilities Act extended this prohibition against
discrimination to all private and public employers, though this was later
modiWed by the U.S. Supreme Court. The court decided in the Garrett de-
cision in 2001 that state employees who sue their employer in federal court
cannot receive monetary damages under the ADA. They also decided in a
diVerent case that the assessment of whether a person has a qualifying dis-
ability is undertaken with full consideration of ameliorating supports (like
taking medicine or using an assistive device). Thus, if a person uses such a
device and therefore is no longer limited in a major life activity, they would
no longer be eligible as a person with a disability under the ADA.
The law states that “no employer shall discriminate against a qualiWed in-
dividual with a disability because of the disability of such individual in re-
gard to job application procedures, the hiring or discharge of employees,
employee compensation, advancement, job training, and other terms, con-
ditions, and privileges of employment.” In other words, the employer must
appraise an individual with a disability who is applying for a job using the
same criteria that would be used to appraise an individual without a disabil-
ity. The employer is required to make reasonable accommodation for the
person with a disability who is qualiWed for the job. This “reasonable ac-
commodation” has been interpreted to mean removing job obstacles that
would prevent the otherwise qualiWed person with a disability from work-
ing. This may mean removing physical obstacles, providing for movement
in the workplace, modifying equipment so that it can be used by a person
with a disability, and restructuring the job setting and schedules as well as
training and policies to accommodate the person’s disability. Failing to make
these accommodations is a violation of the law; however, the employer is
not required to hire the person with a disability if doing so would impose
“undue hardship” on the employer. Undue hardship is determined based on
the net cost to the employer. An employer should determine whether fund-
ing is available from an outside source, such as a state rehabilitation agency,
to help pay for all or part of the accommodation. In addition, employers
should determine whether they are eligible for certain tax credits or deduc-
tions to oVset the cost of the accommodations.
Another part of the ADA provides access to all public places by prohibit-
ing discrimination against people with disabilities. This means that all forms
of public transportation, such as trains, subways, and city buses, must grad-
ually become accessible to those with disabilities. This means “phasing in”
accessible buses, etc., though there are still some older vehicles that may not
be accessible. Architectural barriers such as stairs in buildings and narrow
doors must also be removed or bypassed to the maximum extent feasible,
and all new buildings and facilities must be constructed without these phys-
ical limitations. This aspect of the ADA also applies to private companies
providing transportation services, such as bus companies, airlines, and taxi
companies.
Another important aspect of the ADA is its prohibition of all discrimina-
tion in public accommodations against people with disabilities. This applies
to almost every business or place frequented by the public, including restau-
rants, bars, theaters, stadiums, concert halls, hotels, inns, bakeries, grocery
stores, gas stations, professional oYces such as those of doctors and lawyers,
bus and airport terminals, libraries, galleries, and physical exercising facili-
ties, such as gyms and bowling alleys. Businesses are required to make rea-
sonable accommodations, for example by making doorways passable for
someone in a wheelchair. Again, the law allows the business to plead unrea-
sonable cost and thereby avoid making the structural changes necessary to
provide access. Nevertheless, this aspect of the ADA should provide greater
overall access and freedom of movement and opportunity for people with
cerebral palsy to move in the public sector.
How does the Another part of the ADA prohibits discrimination by life and health insur-
ADA aVect life or ance companies, which are not permitted to deny coverage based on an indi-
health insurance? vidual’s or a family member’s disability. The practical eVect of this provision,
however, is uncertain because it continues to allow insurance companies to
deny coverage if the denial is based on “sound actuarial principles” or “rea-
sonable anticipated experience.” This means that an insurance company is
not allowed to reject an applicant for insurance based on the disability; how-
ever, it may reject the applicant based on experience which shows that a sim-
ilar person utilizes more services than the average person applying for insur-
ance. Because of this uncertainty, many individuals and families Wnd it very
diYcult to obtain life or health insurance unless it is in the context of a man-
dated group plan through employment. Some states are attempting to fur-
ther tighten the prohibitions against discrimination by insurance companies
with respect to people with disabilities.
Can someone with For individuals who are able, one of the major opportunities for developing
cerebral palsy get independence is the ability to drive a motor vehicle. The individual state laws
a driver’s license? regarding the speciWc driving requirements for persons with disabilities vary
widely, but all have four general rules. First, the individual’s eyesight must be
good enough to allow him or her to read road signs. The level of corrected
vision must be well deWned and documented before a person can obtain a
driver’s license. Second, individuals with a physical disability must document
their ability to manage the controls of the vehicle they plan to drive. All states
provide for limited licenses that prescribe modiWcations to the vehicle the in-
dividual will drive (hand controls and speciWc mirrors are examples). Some
automobile companies or dealers will modify a vehicle to make it possible
for the person with a disability to drive. Third, individuals must have suY-
cient cognitive function to be able to understand the laws, to read signs, and
to be able to plan and understand the use of a motor vehicle. Fourth, all states
have speciWc laws regulating the circumstances under which a person with
seizures may obtain a driver’s license. These laws vary widely, so if you have
seizures, you’ll need to obtain a copy of the law in your state before pro-
ceeding. Some states require doctors to report all seizures in a patient with a
driver’s license. If the patient has well-controlled seizures, the state will issue
a driver’s license. The individual needs to work with the state licensing board
and the physician treating the seizures.
All states have special driver’s education classes in which a person’s indi-
vidual disability is evaluated and driver’s training is given in a speciWcally
modiWed vehicle. The trained driving instructor then assesses whether the
individual is skillful enough to continue with the training. A license is usu-
ally only granted after the person has demonstrated driving competence for
a state oYcer. Special education specialists or vocational rehabilitation pro-
fessionals can provide further information about driver’s education classes
for people with special needs.
What are the All parents must consider the subject of providing Wnancial protection for
legal provisions their dependent children, but Wnancial considerations for parents who have
for Wnancial care a child with cerebral palsy may be more complicated than those for parents
for a person with of a child without a disability. It is crucial for these parents to consult a pro-
cerebral palsy? fessional who has a strong background in Wnancial planning, accounting,
and law, and who understands how these areas apply to the family’s speciWc
situation. In planning both for the family’s Wnancial security and for the
Wnancial care of the child, many areas should be examined, such as family as-
sets, expected retirement income, the appropriate amount of life and dis-
ability insurance, and the amount of federal funds for which an individual is
eligible.
The last area—identifying and obtaining federal funds—is complex, and
parents should certainly obtain professional advice and assistance from a
Wnancial adviser and an attorney. We will brieXy describe several of the fed-
eral programs administered by the Social Security Administration below.
When is an indi- Also see Chapter 10, “Financing Care for the Child with Cerebral Palsy.”
vidual with cere-
bral palsy eligible If an employed person becomes disabled, he is eligible for disability insur-
for Social Security ance, and his spouse and children are also eligible for SSDI. Eligibility for
and Medicare? Social Security Disability Insurance (SSDI) is determined by the amount
of the individual’s prior Social Security contribution and by the length of

service of the employed person. Those eligible for SSDI are the spouse, mi-
nor children, and adult children whose disability occurred before age 22.
Those eligible for survivor’s insurance include the same group: widow or
widower, minor children, and adult children whose disability occurred be-
fore age 22. The beneWt received (either by the adult or the child with a dis-
ability) is not determined by assets or income level, but is determined solely
on the basis of whether the person has met the federal standard for disabil-
ity. The National Organization of Social Security Claimants Representatives
(NOSSCR) is an organization comprised of attorneys who specialize in So-
cial Security. It provides a resource to persons seeking expert assistance on
Social Security issues.
Medicare is a medical insurance program that uses the same criteria for
eligibility as SSDI. Minor children of workers who have paid into the So-
cial Security system, as well as adult children whose disability occurred be-
fore age 22, are eligible for Medicare. This health insurance is for acute health
management, but also covers costs of wheelchairs and other assistive tech-
nology. Recent amendments have now added a drug beneWt as well.
The other major federal program administered by the Social Security Ad-
ministration is Supplemental Security Income (SSI), which is available to
individuals based on their Wnancial need. SSI is available to children with
signiWcant disabilities if their parents’ income and resources are low enough.
SSI beneWts can be paid even to parents of infants and toddlers. Some indi-
viduals start receiving SSI at age 18 because the law stops “imputing” parental
income and resources to a person once he turns 18. In other words, children
of “poor” parents may receive SSI from an early age. Children of more
aZuent parents will probably not qualify (due to deeming of parental in-
come and resources) until their 18th birthday. If the beneWciary is over the
countable resource limit (generally $2,000), he is simply not eligible for SSI.
Certain types of homes, household furniture, and clothing are excluded, up
to certain limits, from the calculation of a person’s assets.
There are many provisions for how assets and the living situation are con-
sidered. For example, SSI beneWts are generally reduced by one-third if the
person lives with someone else. Also, SSI beneWts are reduced to a minimal
amount, if the person lives in a facility paid for by Medicaid, the medical in-
surance program associated with SSI. The beneWt amount is also aVected
(and may be reduced) by countable income.
The rules of eligibility for Medicaid are generally similar to those for SSI.
The major beneWt of Medicaid is that, in addition to acute health care, it pro-
vides for long-term chronic care. Medicaid will pay ongoing long-term nurs-
ing home or institutional placement care for an individual.
In addition to these federal programs, there may be other programs ad-
ministered by other federal agencies, such as the Bureau of Indian AVairs
and Armed Forces Retirement BeneWts programs, as well as Private Pension

Survivor’s BeneWts, which need to be investigated. Any and all appropriate
assistance for which a person is eligible should be pursued.
Do parents of chil- In addition to considering the issues of guardianship and Wnancial planning,
dren with cerebral parents should also provide for the distribution of their estate, whether they
palsy need wills? have children with cerebral palsy or not. If parents die intestate—without a
will—the estate will be distributed as required by the state code. If parents
want to make speciWc provisions for their child with disabilities which are
diVerent from those for any of their children without disabilities, they can
only do this through a will. Parents should seriously consider how they want
to divide funds between healthy children and children with disabilities so
that the child with a severe disability will be protected. A special needs trust
or a group trust is often the best way.
Under certain circumstances, it may be necessary to consider disinherit-
ing a child with a disability (discussed in detail below). This may be the
best provision for the whole family, because it allows the state to assume re-
sponsibility for the child’s care. This is certainly a very important considera-
tion in future Wnancial planning, and especially in preparing a will where
the needs of the whole family are considered and not just those of the indi-
vidual with the disability. Because of the complexity of the circumstances, it
is advisable to consult an expert in the Weld of estate planning for people with
disabilities.
For parents of a If the extent of the disability or the age of the child is such that the parents
child with cerebral are complete guardians of the child, then they should state whom they wish
palsy, what con- to have as the ongoing guardian of the minor child over whom they have
siderations are guardianship. This is called assigning a testamentary guardian. The guardian
important in named in the parents’ will must also be formally appointed by the courts.
drawing up a Courts usually give great weight to the parents’ choice of guardian as stated
will? in their will, and often the testamentary guardian named in the will is ap-
pointed by the court to be guardian. When making these provisions, parents
should seriously consider the diVerent levels and types of guardianship that
are most appropriate. This part of the will must be reviewed periodically,
since individuals and their circumstances change over time. These provi-
sions of testamentary guardianship are true for both minor children and for
adults over whom an individual holds guardianship.
What are the Though it sounds cruel, there are several reasons why disinheriting the child
advantages of dis- with a disability might be in the child’s best Wnancial interests. A child with
inheriting a child a severe disability, especially one who also requires guardianship, usually is
with a severe eligible for all the means-tested government programs such as SSI and Med-
disability? icaid. As soon as this individual acquires a certain level of assets or income,
these means-tested program beneWts are reduced as the government’s way of
allocating scarce resources to those most in need. This means that it will
simply be used to replace government beneWts. In essence, when the child
receives the inheritance, his government beneWts will be cut oV until all the
inheritance is spent, at which time the beneWts will begin again. This has the
same net result as if all the inheritance were given to the government and the
means-tested beneWts to the individual were continued. Therefore, instead
of allowing the individual with a disability to inherit equally and by the same
unrestricted mechanism that a child without disabilities inherits, a parent
may consider several other options, including completely disinheriting the
child, establishing a trust fund with speciWc allocations of how the money
may be spent, or leaving the child a signiWcantly reduced sum at a level that
will not diminish the means-tested government beneWt.
Another possible reason to disinherit your child is that the guardianship
requirements change signiWcantly for a person with a disability to the point
where the state often requires a guardian of the estate to be bonded. This in-
creases the cost to the assets of the incompetent person, and if those assets
are not very large, they will quickly be depleted. Another consideration is
that if individuals who are incompetent or only marginally competent in-
herit funds, this often makes them targets of unscrupulous people who will
try to take advantage of them. Providing the funds in the context of a trust
fund may, in fact, be a better method of protecting the individual.
Finally, most states do not allow an incompetent person to make a will,
which means that the estate of this person upon his or her death will be dis-
tributed according to state laws. Although a competent person can bequeath
assets to a speciWc charity or to speciWc persons, an incompetent individual
cannot.
All the above are reasons you might consider for disinheriting a person
with a disability, but before taking this step it should be carefully discussed
with lawyers, accountants, and Wnancial advisers familiar with this area of
planning.
What are the dis- It is important to consider the feelings of the person with a disability. The
advantages of dis- concept of disinheritance may make the individual feel unloved or uncared
inheriting the for. This feeling may be prevented by bequesting the person an amount that
child with a severe will not have an impact on means-tested income. Parents may also wish to
disability? explain the reasons for the speciWc inheritance and to include with the will
letters that express love and concern and explain the special care that the per-
son will receive.
What is a trust? Trusts hold money or property that the grantor (the person who sets up
the trust) leaves for the beneWciary’s economic beneWt. Unlike an outright
gift or inheritance through a will, trusts usually contain carefully written in-
structions on when and how to use the trust’s contents. Parents (or others)
can set up a trust while they are alive or as part of a will. If parents set up a
trust while still alive, they can be the trustees (the persons who manage the
trust). They can also assign someone else to be the trustee. A trustee can be
a person or a Wnancial institution.
There are many diVerent types of trusts that serve diVerent purposes.
Laws that aVect trusts diVer from state to state. An attorney who specializes
in special needs trusts should be consulted in developing a trust in this con-
text. For example, each state may have separate standards that determine
whether a trust is a “Medicaid qualifying trust” so as to authorize disregard
of income and principal. These standards may be quite complex.
What kind of Most states oVer some form of supplemental, discretionary, or cooperative
trusts are most master trust. These are the types of trusts usually recommended when par-
commonly used for ents want to protect their child’s governmental beneWts.
children with spe- Supplemental trusts. These are designed so that the principal and its
cial needs?
earnings supplement the beneWciary’s care but do not replace the funds re-
quired to pay for this care. This kind of trust is good for the recipient of SSI
and Medicaid whose assets cannot exceed certain levels. The trust grantor
can carefully direct the trust not to replace the cost of services covered by
Medicaid. Instead, the trust would require the trustee to only provide funds
for certain items, services, or expenses not covered by SSI or Medicaid. As
an example, a supplementary trust could be established providing income
that allows a certain individual to spend money on entertainment, such as
going to the movies, traveling to visit friends and relatives, and purchasing
small gifts for loved ones. Because this money is restricted to speciWc uses,
the income from such a trust, if it is not too large, will not be considered as
income in a means-tested program. Because the principal of the trust is not
an asset of the individual beneWciary, it also cannot be considered in means
testing for federally funded programs.
Discretionary trusts. Some states allow the grantor to give the trustee
full discretion in how much or how little of the trust to distribute. This kind
of trust can also contain provisions that limit distributions so that the per-
son remains eligible for government beneWts. The trustee must be very care-
ful not to distribute money from the trust for goods and services or outright
to the beneWciary in a manner that will disqualify the beneWciary from re-
ceiving government beneWts. There are drawbacks to this kind of trust. The
trustee must be very knowledgeable about the type of beneWts a person is re-
ceiving and the related eligibility requirements. Also, the trustee has total
power over distribution of funds and may hold back trust distributions to
the detriment of the beneWciary.
Some other potential dangers exist in establishing a trust in which the
trustee is given full discretion on how to spend the funds. For example,
the government may attempt, through legislation or the courts, to direct the
trustee to fund or reimburse public outlays such as Medicaid, or count the
full amount available for trustee disposition as a resource. The problem is

that a trust established under today’s legal standards must anticipate changes
in the law 20 to 40 or more years from now. It has been suggested that an
“in terrorem” provision be inserted in trusts such that, if the government
successfully “breaks/invades” the trust, the principal and proceeds revert to
other relatives. This would be a disincentive to the government trying to
“break/invade” the trust.
Master cooperative trust. Also called “pooled trusts,” these are special
trusts established and managed by a nonproWt organization and created to
help disabled individuals and their families. Instead of setting up an indi-
vidual trust account, these types of trusts allow families to pool their re-
sources with other families. A group trust allows a parent to fund a trust for
a child without aVecting eligibility for public beneWts, while specifying sup-
port services and allowable uses. Such trusts are available in many states.
Because the funds are pooled, the potential for higher returns is enhanced.
Another advantage of this form of trust is that individual parents may lack
suYcient funds to meet minimum requirements of a commercial Wnancial
institution, but can do so by pooling their funds with other parents. The
group trusts often have lower minimum trust amounts. In addition, because
the pooled account is usually managed and invested as one large account, ad-
ministrative fees are less. BeneWciaries of these trusts usually receive earnings
based on their share of the principal.
How do I set up a There are basically two ways to set up a trust: It can be testamentary (as part
trust? of a will) or inter vivos (living).
A testamentary trust is part of a will and does not take eVect until after
the person who drew up the will dies. Such a trust could be funded by life
insurance proceeds, which do not normally pass through the will. This is a
way to fund a fairly large trust if a parent lacks signiWcant assets to leave
through a will. Parents can change the trust’s terms any time the will is
changed. So if the intended beneWciary should die Wrst, the will and trust
can be changed.
A living will means the person sets up a trust before dying. In doing so,
parents and others can make regular gifts to such a trust. Grandparents could
make testamentary bequests from their will to such a trust. Parents can be the
trustee and manage it at their own discretion, or they could assign someone
else to be trustee to see how that person would manage the trust. Living
trusts are either revocable or irrevocable. A revocable trust can be changed
or ended by parents before they die. With an irrevocable trust, parents set up
the trust and give up most power to change or end it. Each way has diVerent
tax advantages, depending on the size of the parents’ estate, family situation,
and other factors. Remember to consult with an attorney who specializes in
special needs trusts.
What happens The trust must spell out what happens to the trust when the primary beneW-
when the beneW- ciary dies. For example, a $50,000 trust may be established, with a speciWc
ciary dies? bank as the trustee, with instructions to distribute income to a child with a
disability as the beneWciary. The beneWciary may use this income for a speci-
Wcally deWned purpose as listed in the will. When the beneWciary dies, the
trust may provide that the money will be divided among relatives of the
beneWciary or the grantor. In this way, parents are setting aside money that
beneWts the child with a disability and that is then passed on to their other
children or grandchildren, for example, upon the death of their child with
a disability.
In establishing a trust, it is important to consider who will be the trustee.
A large trust should probably have a corporate trustee, usually a bank. Al-
though an individual trustee can be established, many states require a bond
in those circumstances. The trust may also be established as a mandatory
trust that requires the trustee to pay a Wxed amount of money to the beneW-
ciary at predetermined intervals.
How do I obtain It is your legal right to bring a lawsuit to collect for damages due to medical
legal help to collect malpractice or other injuries that the child incurred because of the actions
damages from an of someone else. There are many scenarios in which injuries to children
injury that may occur, such as falls, near-drownings, smoke inhalation, overdosages of a
be the cause of my substance, or adverse eVects of drugs or surgery before, during, or after
child’s cerebral birth, which may cause cerebral palsy and permanent disability. Injury dur-
palsy? ing birth as a cause of cerebral palsy has been a major concern for many years,
but is now understood to be a cause in only a small percentage of cases of
cerebral palsy.
There are lawyers whose specialty is evaluating injuries and preparing
suits for medical malpractice. The best reference for Wnding such a lawyer
is usually your family lawyer or a general practice lawyer. Also, bar associa-
tions, referral services, or parent groups may be good sources for recom-
mendations. A competent lawyer will evaluate the evidence and then discuss
with you whether he or she feels there is legal evidence suYcient to pursue a
malpractice claim. These lawyers usually work on a contingency fee, which
means that they will receive a speciWc percentage, varying from 25 to 50 per-
cent, of the amount recovered. Therefore, they will probably tell you if they
feel you do not have a good case, because they do not want to spend their
If my child has time and money unnecessarily. Some attorneys will ask the parents to pay
cerebral palsy due their out-of-pocket expenses.
to a birth injury,
doesn’t that mean Medical malpractice, especially with respect to a birth injury, may be very
that I am entitled diYcult to prove. A malpractice claim requires proof that the medical care
to a malpractice your child received was in some way below the ordinary standard of care in
insurance settle- the community. The occurrence of even signiWcant injury in the course of
ment? medical treatment does not automatically establish that malpractice has oc-
curred if that medical treatment is deemed to meet the community standard

of practice.
In addition, there must be harm or damage suVered by the individual
as a direct result of this deWcient practice. As an example, if your child was
accidentally given a drug dose that was ten times higher than the recom-
mended amount, this clearly falls below the community standard of practice.
However, if this error did not lead to any harm or damage to your child, then
there may be no malpractice recovery.
Just because your child has cerebral palsy does not mean that there has
been some kind of medical negligence. Most children have cerebral palsy be-
cause of damage suVered in their mother’s womb unrelated to any issues of
medical care. On the other hand, there are certainly incidents where inade-
quate medical care during pregnancy, delivery, or shortly afterwards was re-
sponsible for the child’s cerebral palsy. For most children, cerebral palsy
caused by such injuries does not become apparent until the child is at least 6
months old.
What’s the best It is often a good idea to place large settlements from medical malpractice
thing to do with a lawsuits into a trust fund for the child. Sometimes the trustee can be the
large settlement parent, but often the trustee is a corporate entity, such as a bank. The court
resulting from a may deWne how the trust is to be used—say, for medical care or perhaps
malpractice law- setting aside a speciWc amount for housing. Spending money from the trust
suit? for certain items, such as specially modiWed vans, is usually allowed. Par-
ents may receive a certain amount every month to help them care for the
child.
Another, more simple option for protecting funds from a malpractice
case is an annuity. This is an insurance policy that can be structured to pay
out at varying amounts over the course of the child’s life with the principal
to be distributed to designated persons in the event of the child’s death. Be-
cause annuities generally earn tax-free interest, they can grow substantially
during the early years when needed payments may be small. Then by the
time the child requires greater funding for housing or supportive services,
the annuity can be structured to pay out at a higher level. The terms of an an-
nuity are usually determined by the parents and the attorneys involved. The
earlier information on structuring funds so as to not displace public pro-
gram (SSI, Medicaid) eligibility applies here as well. Malpractice attorneys
are sometimes not expert in this context and may need to consult colleagues
who specialize in this Weld to structure the settlement in a way most beneW-
cial to the injured child.
Are there special
programs that pay Some states, such as Florida, have established birth injury programs in
damages for med- which beneWts may be obtained outside of the malpractice legal system. The
ically caused federal government has also established a program for children sustaining
injuries? injuries due to vaccinations in which the insurer is the federal government.
BeneWts are paid out of this program if it is shown that the immunization
caused the child’s injury without having to go through a lawsuit.
How can I use the The legal system exists to provide protection for individuals, including people
law to help my with disabilities. Recent legal developments have provided much more op-
family member portunity for individuals with disabilities. To take advantage of this new le-
who has a gal and social climate, it is important to be an advocate for yourself and for
disability? the individual with a disability. Part of this advocacy work involves lobbying
your state and national legislators so that the ability of the person with a dis-
ability to participate in society will continue to expand.
Being an able advocate also means educating yourself and others about
both the speciWcs of the law and the arrangements for obtaining help from
professionals. It is this combination of understanding the individual’s rights
and legal standing and understanding how to contact the appropriate pro-
fessionals which allows the individual with the disability to take full advan-
tage of the legal system.
2
Part Two
Caregiving
Techniques
Taking Care of Yourself When You Care for Others
Taking care of any child requires a good deal of work, time, and patience,
and taking care of a child with special needs requires an abundance of all
three. Oftentimes, parents feel overworked and frustrated, and they are con-
cerned and distracted by the emotional and Wnancial burdens that aVect
them as they raise a child with cerebral palsy.
stressors
Beginning with the birth of the child, and sometimes even before, parents
have periods of anxiety and a great deal of uncertainty. Parents and other
caregivers are faced with Wnding answers to questions that can’t always be
answered. They will often need to make important decisions quickly, since
conditions can change swiftly. They must Wnd professionals who can meet
their child’s needs—and can communicate with the family. This process, as
well as the many other things caregivers do, requires lots of time and eVort.
Depression is a very common result of dealing with a child with disabili-
ties. It can manifest itself in sleeplessness, over- or undereating, impatience,
irritability, anger, or a profound sense of sadness. The physical health of care-
givers is also at risk because caring for their children presents such heavy de-
mands. Lifting children who have grown into adults can pose a tremendous
physical strain, for example. Some parents Wnd the needs of the child so
overwhelming that they neglect their own health, either because it seems
insigniWcant or because it is too costly to eat well and to get proper rest and
respite from caregiving responsibilities.
Marital discord often results from the enormous stress of having a child
with disabilities. Many feelings—including guilt, fear, anger, and anxiety—
can cause people to lash out at each other. Sometimes a parent Wnds it diY-
cult even to get in touch with personal feelings, because the day-to-day ac-
tivities of caring for a child with special needs while simultaneously holding
down a job and caring for the rest of the family are overwhelming.
It’s not uncommon, either, for diVerent parents to react diVerently to the
298 ♦ caregiving techniques
child’s problem: one may become outwardly overemotional, while the other
withdraws and even appears uninterested. Partners often discover that they
have less time for each other or seemingly less interest in the relationship
than they used to. A single parent might not have this type of conXict, but he
or she will then have to make decisions alone, which is also stressful.
Siblings are often aVected by the extra needs that a child with disabilities
presents to the family unit. Jealousy and attention-seeking behavior are com-
mon ways in which siblings try to make sense of the situation. Additionally,
brothers and sisters may have diYculty dealing with their peers’ reactions to
their sister or brother who has a disability. Guilt can also be a formidable
feeling in a child who is able to run, jump, and skate while his older brother
is unable to walk. On the other hand, most children cope pretty well with
life’s surprises, as one little girl named Colleen shows in her story, called “A
Special Sister”:
All my life I wanted to have a sister! I imagined her to be my best friend. I always
wanted to have somebody there when I needed them. I wanted somebody to hug, to
laugh with, and to be myself with. I wanted a special closeness with my sister. Kind
of like we always had a secret together. A sister would be with me all my life.
My dream came true!!! I did get a baby sister. Her name is Kathleen. She fooled
us all by being born on April Wrst. I was so happy my insides were jumping all around.
I made a big colorful picture for her to look at in her crib.
When I held her for the Wrst time I felt my heart melt because we loved each other
so much!
In a short time we found out that Kathleen has cerebral palsy. It’s only on her
right side. Her arm and leg don’t work too well. So we do therapy with her! I am
learning a lot about how our body works so I will be able to help her! She and I
work well together. She listens to me, so I listen to her. And that’s the way it will be
all our lives.
Kathleen is more special than I ever thought she could be. I hug her, I laugh with
her, and we already have secrets together! She is very special!!
As a child with a disability grows, parents need to deal not only with the
increased time commitment necessary to care for the child but also with
whatever prognosis the doctor has provided. Needless to say, the other re-
sponsibilities of running a household coexist with these special responsibil-
ities. Parents may Wnd themselves making a multitude of visits to diVerent
physicians and therapists, and spending untold time and money.
Children frequently need surgical procedures that require a parent to
spend increasing amounts of time away from family and job, and that can
make life very diYcult. Additionally, the Wnancial cost of purchasing wheel-
chairs, braces, and various other equipment can be staggering.
how to cope
All parents have dreams for their children. Some children with mild
disabilities are able to live normal lives. However, there are many children
taking care of yourself when you care for others ♦ 299
whose parents must accept that they will never walk and may never be able
to feed themselves or speak. It is therefore essential that caregivers—be
they mothers, fathers, grandparents, siblings, or unrelated individuals—
recognize their stressors and develop and maintain coping mechanisms.
They must learn, for example, to ask for advice and help, and they must
come to terms with the fact that not all of their child’s needs can be met.
Other parents who are now or who have been in a similar situation can be
of great comfort and help. Often they can provide more assistance than
well-meaning friends and relatives who don’t have any experience in this
area.
Caregivers need to be in tune with their feelings and be on guard for signs
that they might need some help maintaining their own emotional health.
Parents need to communicate with each other and with health care profes-
sionals as much as possible, so that decisions are based on their true feel-
ings. Couples need to be aware of the stress on their relationship and then
avail themselves of opportunities for help. They may simply need to set aside
more time for talking, or they may want to arrange for special times alone
with each other. Marriage counseling can often be very helpful for couples
who are having trouble coping with stress of various kinds.
Caregivers must acknowledge that they cannot be eVective caregivers
unless they take care of themselves. They must learn to be in touch with
their needs and seek out the resources to have those needs addressed. “Re-
sources” come in many shapes and sizes. You may develop a pool of friends
who can provide respite, some time for yourself without the children. To
reduce the time and strain of numerous appointments and errands, you
can coordinate appointments and, if possible, obtain many services at the
same facility. The various Ronald McDonald houses throughout the coun-
try are a wonderful resource for families needing to travel away from home
for specialized treatment or surgery. Mini-vacations, even a day trip to the
country, can provide an enormous amount of relief. You also need to culti-
vate individual stress-reducing techniques, such as exercise, reading, hobbies,
or prayer. Religious institutions and community groups may have support
groups. Finally, you may want to Wnd a support group. There are profes-
sionals who can help guide you to an appropriate support group depending
on your needs.
In some cases you may need to place your child in a group home or a sim-
ilar facility, so the major responsibility for care is put in the hands of people
who are able to handle the nuances of nurturing a child with a disability. This
is particularly true as caregivers grow older, or if siblings are being neglected
or otherwise suVering from the experience. Ultimately, the caregiver needs
to care for himself or herself in order to be able to continue to care for an-
other person.
Protecting the Caregiver’s Back: Basic Body Mechanics

Many tasks in caring for a child may place the care provider’s back at risk
for injury. Most of these tasks involve performing the activities of daily care
such as dressing, bathing, feeding, and moving the child. This section de-
scribes good body mechanics that can be used by the care provider to de-
crease the risk of back injury.
dressing
Newborn to age 3. Use a surface that is at a comfortable working
level, such as a changing table. The parent should not be forced to lean
over the surface in order to dress the child. At this age the crib surface
should also be at a comfortable level (keeping in mind that the mattress
must be lowered when it is anticipated that a child will soon be standing
up), and the crib mattress may provide a good surface for dressing the
child.
Ages 3 to 10. If the child is able to, he ought to be encouraged to stand
up and hold on to furniture while being dressed. This is good therapy and
movement toward an adult style of dressing and allows the child to be
dressed with less lifting than is done when the child is dressed lying down.
If the child must be dressed lying down, and the child’s bed is used for dress-
ing, then the mattress surface should be at a comfortable level for the parents
to work. This can easily be achieved by placing the bed on blocks, but care
must be taken to use side rails so that the child does not fall out of a high bed.
If the bed is on the Xoor, the caregiver ought to place one or both knees on
the Xoor rather than bend over from the back.
The older child and teenager. The same rules apply, but at this age,
because of the child’s larger size, it is especially important to dress her while
she is standing if at all possible.
bathing
Bathing is an activity that can involve a great deal of lifting and bending
over in positions that can be very stressful to the caregiver’s back. Before
bathing a young child on a changing table, the caregiver should adjust the
level of the table to the level of the caregiver’s mid-abdomen. Children
from age 2 to age 10 especially enjoy being bathed in warm water and are
usually bathed in a bathtub. There are several diVerent kinds of bathing
chairs that provide trunk support for the child who has poor trunk control;
an occupational therapist can help you select one that is appropriate for
your child.
The main problem in tub bathing for caregivers, however, is lifting the
child into the bathtub. Before he reaches about age 10 this may be diYcult
protecting the caregiver’s back: basic body mechanics ♦ 301
but can still be managed. After age 10, it becomes more diYcult. Whenever
possible, the child should be lifted or helped into the tub in a standing posi-
tion; then he can sit down from the standing position. This is much easier
for the caregiver. Also, if the caregiver sits on the edge of the bathtub with
one foot in the tub before lifting the child, this reduces the stress on the care-
giver’s back. For the child who can stand, use a shower with a hand rail
for him to hold on to. This is an excellent way to bathe an older child who
can stand.
Bath chair
As the child approaches puberty and adult height, it is no longer wise to

continue to lift her into a bathtub. This is hard on the caregiver’s back and
usually is unsafe for the child, because there is an increased risk that the care-
giver will slip and drop the child when she is heavier. If she will continue to
be bathed in a bathtub, a mechanical lift device that attaches to the bathtub
or the ceiling should be used. Or she can be wheeled into a shower if the
proper home modiWcations are made. There are a number of diVerent shower
chair alternatives. Ask your child’s occupational therapist to evaluate her and
determine the best way for her to be bathed—that is, the best way for the
child, the care provider, and the housing situation.
moving
The small infant and child is primarily moved about his environment
by being carried. As the child grows but does not begin to walk, caregivers
must begin to protect their backs and not simply continue to carry the
child until they are physically unable to do so. This requires planning for a
home environment that is accessible to a wheelchair; planning should take
place when the child is between the ages of 4 and 8. Another option is to
use a rolling stool and push yourself, with the child on your lap, along the
Xoor; alternatively, if the child can hold on securely to the stool, he may
be pushed along alone. This will only work if the house is not carpeted,
however.
As the child gets larger, transferring from bed to wheelchair becomes
diYcult. If he may be capable of bearing his own weight so that standing
transfers can take place, this needs to be encouraged even at the age when
the child is still small enough to be lifted. If you wait to start doing stand-
ing transfers until he absolutely cannot be lifted, then it’s harder for both
the child and the caregiver to learn the technique, and it’s much more anxi-
ety provoking. Both of these factors make it more likely that attempts to
learn the technique will be unsuccessful. If a child cannot bear weight and
is to be cared for by one adult alone, then mechanical lifts are usually
needed to improve the safety of the transfers and to protect the caregiver’s
back.
feeding
Most infants are fed while being held by the caregiver. By 9 to 12 months,
however, the child should be fed while sitting in a seat, with the caregiver do-
ing the feeding sitting in front of the child. This frees both arms and allows
the caregiver to position herself at a comfortable height and have an easier
view of how the child is doing.
general guidelines for protecting your back

1. Always get your body as close to the child to be lifted as possible be-
fore starting to lift.
2. Whenever possible lift by bending the knees, not by bending through
the back.
3. When working standing up, adjust the work surface and the child so
that he is at the level of your navel (mid-abdomen), so that you don’t bend
over while bathing or dressing him.
4. If you are working with a child sitting (such as feeding a child), the
child’s face should be almost even with yours when you sit up straight. This
prevents you from slouching over and putting strain on your spine.
Making Things Easier for You and Your Child:

Home ModiWcations
There are various ways to modify the home environment so that your
child will have more independence and things will be easier on you. The cost
of these modiWcations varies from being inexpensive to very costly. The de-
sired modiWcations may involve more available space and current resources
than the caregiver has, however.
Any modiWcation must be consistent with the cognitive level of the indi-
making things easier for you and your child ♦ 303
vidual for whom it is planned. In the case of individuals with signiWcant

mental retardation, the ability to be more independent in the home could re-
move a barrier that is a potentially useful safety net. In other words, it is un-
desirable to modify the home in a way that would allow the person more
freedom of movement if the person might inadvertently hurt himself or her-
self. Therefore any suggestions must be evaluated in terms of the cognitive
level of the child with the disability.
Here are several suggestions for modiWcations. Some involve merely
placing objects diVerently, some involve making purchases, others involve
construction. Those that involve construction range from relatively simple
projects that the caregivers might do themselves to modiWcations that will
need to be contracted out.
• Rearrange furniture in order to remove obstructions from pathways to
rooms as well as to allow for a wheelchair to turn within a room. This lat-
ter requires a space at least 60 inches by 60 inches square.
• Rearrange kitchen cabinets and refrigerator to put necessary items within
reach of your child. Bathroom accessories should be arranged as well.
Pull-out drawers and lazy susans can increase accessibility.
• Remove plush wall-to-wall carpeting. Finish wood Xoors with a nonslip
Wnish or install industrial-type carpeting.
• Widen doorways.
• Replace doorknobs with lever door handles.
• Replace entrance steps with ramps.
• Install a hinged arm support for help with toileting. A high-rise toilet is
particularly helpful, as is a bidet.
• Install single mix faucets with levered handles and include an anti-scald
device.
• Adjust the height of light switches and plugs to put them within reach.
• Program portable telephones to allow your child full-time access to
others.
• Install an intercom system that can be used between rooms as well as at
entrances.
• Replace bathtubs with wheel-in showers.
• Install an adjustable-height sink and counter with an open front in the
kitchen and bathroom.
• Install an angled mirror above stove burners to allow your child a view of
the contents of pots from his or her wheelchair.
• Buy a home automation system that allows your child to control the TV,
intercom, and thermostat all from a central device.
• Buy a lounge chair with electrically powered positioning and lifting
ability.
• Install a Wre extinguisher at an accessible level.
• Make use of various adaptive devices such as bath chairs, lifts, corner
chairs (which provide support on two sides rather than only in the back),
hospital beds, and eating and writing utensils.
• Increase accessibility with a properly trained service dog.
There are agencies that help plan for and carry out changes to accommo-
date the needs of individuals with disabilities. There are four with a national
focus:
1. ABLEDATA is a database of products, devices, and equipment for
people with disabilities (800-227-0216; www.abledata.com);
2. The National Rehabilitation Information Center (800-246-2742; www
.naric.com);
3. The National Council of Independent Living (703-525-3406; www
.ncil.org);
4. Americans with Disabilities Act Information Hotline (202-514-0301;
www.ada.gov) is another excellent resource for people with disabilities
For similar local agencies, check your telephone book or call the local chap-
ter of the United Cerebral Palsy Association.
Choosing Appropriate Seating

Strollers, feeding chairs, tumble form sets, headrests, seating supports,
and corner chairs—all of these are forms of adaptive seating that may beneWt
children with cerebral palsy. Many companies make diVerent types of seat-
ing in several categories.
Strollers are a universal method of seating—almost all infants and young
children are wheeled about in a stroller by their parents or other caregivers.
For most children with cerebral palsy who are younger than 1 or 2 years, the
standard strollers that can be purchased at any department store are ade-
quate. A 2-year-old who is having a great deal of diYculty with head control,
however, and even the 1-year-old who is not able to provide any trunk sup-
port or head control, needs more support than standard strollers provide.
One good temporary alternative to buying a diVerent stroller or a wheel-
chair is to have an insert fabricated for the existing stroller that can provide
stability, head and trunk support, and more safety.
Most of the nonmedical strollers that are available on the market are not
strong enough for the slightly bigger child, between the ages of 3 and 5. At
this point, a decision must be made about how much support a child needs,
based on an assessment of how much head and trunk control he or she has.
If the decision is made to purchase a medical stroller, the parent may be
pleased to learn that there are a number of medical strollers on the market
that look very much like the standard baby stroller.
Larger stroller-type chairs are useful for quick transportation such as go-
ing to the grocery store. Most of these, however, have a signiWcant drawback
choosing appropriate seating ♦ 305
Medical stroller
for a child who is able to push a chair, since there are no wheels that the child
can reach to push. Many of these larger chairs have a fairly narrow base, too,
and can tip over easily if used on an uneven surface. Unlike these strollers,
which usually have small wheels, there are strollers designed for outdoor use
which have larger wheels. They are especially useful for parents who want to
take their children on outdoor walks. These large-wheeled strollers are very
stable and are easier to push on uneven terrain. There are also a few specialized
wheelchairs that can be used at the beach, over sand and even by the water.
For the child who isn’t walking and needs more support, generally strollers
are not a good idea for long-term sitting past age 2 or 3. All of these strollers
continue to have the form and shape of the infant baby stroller, a factor that
appeals to parents because the public tends to pay less attention to these
strollers than they do to a wheelchair. From the child’s perspective, however,
continuing to be pushed around in a stroller type of device is undesirable, es-
pecially when the child is bright and interested in interacting with his peers.
Moving to a regular large-wheeled chair, or a more standard-appearing
medical wheelchair, gives him the sense that he is now growing up and is into
a “grown-up’s” wheelchair. Also, as awareness catches up with technology,
these wheelchairs are becoming more attractive and colorful, thus more ap-
pealing to a child and more acceptable to his or her peers. Such a chair also
allows the child to push himself if his arm strength and coordination permit.
Adapted wheelchairs
There are many other advantages to having a standard type of medical

wheelchair. The adaptive seating—including trunk support, solid supported
seats and backs, headrests, neck supports, and chest straps—is much easier
to insert. The large wheelchair is much easier to push over many kinds of ter-
rain, and it is more stable. For this reason, certainly by the age of 5 or 6, since
mobility is so important, the child should move out of the stroller into a reg-
ular type of wheelchair, perhaps a power wheelchair. If a power chair is pur-
chased, a stroller might be an acceptable backup, if you already own one. It
is certainly not necessary to order a fully adapted secondary wheelchair if a
power chair has been ordered; on the other hand, it is a good idea to have a
secondary type of wheelchair available, both because power chairs break
down and because there are many places where power chairs can’t be trans-
ported or may not be usable due to the space required for maneuvering.
There are many adaptive chairs used to improve the child’s sitting posture
and especially for feeding. Generally, an adequately arranged wheelchair with
good trunk support, head control, and a lap tray can be the feeding chair for
the child as well. Some parents or therapists prefer to have a separate feed-
ing chair; a frequently used type is the tumble form, which is a foam-molded
chair in which the child can bend forward. For the child who has a tendency
to extend the head and spine, these chairs work well for feeding. However,
these tumble form chairs provide very poor postural control for the child
who tends to collapse forward and should not be used as wheelchair inserts
or for a signiWcant portion of the child’s sitting time during the day. Corner
chairs are also used, and they help the child develop sitting balance. These
choosing appropriate seating ♦ 307
Corner seat
are very simple and excellent seating devices to allow the child to develop sit-
ting coordination and balance on the Xoor.
purchasing a wheelchair
Parents should never walk into a medical supply store and tell a salesper-
son that they would like to purchase a wheelchair for their child, because
even well-intentioned salespeople have received little training in assessing
the child’s needs. Generally the child’s physical therapist, or the orthopedist
or physiatrist who is seeing the child, will provide guidance about a wheel-
chair purchase based on the child’s needs. Many pediatric hospitals have
wheelchair clinics where physical therapists, rehabilitation engineers, and
physicians discuss the family’s and the child’s situation and determine what
type of chair will meet the child’s, the family’s, and the school’s needs, and
then advise the parents accordingly.
Before purchasing a wheelchair, these three factors must be examined:
the child’s need for postural control and support, the child’s ability to push
his or her own chair, and the need for any adaptive devices. In addition to
these issues, which directly involve the child, it is also important to consider
the child’s home and school—the settings where the wheelchair will be used.
This will determine how important it is to have a lightweight chair and will
have a bearing on the size of the chair purchased. A chair to be used in a
country environment, where there are no sidewalks or paved streets, needs
to be extremely stable; in this setting, small-wheeled wheelchairs, which are
diYcult to push across gravel and loose dirt, are to be avoided.
The availability of service and repairs should also be considered (see
“About Wheelchair Maintenance,” below). Although manual wheelchairs

need repair less often than power chairs, parts of the wheelchair will eventu-
ally wear out or break and will need to be replaced. Another issue that is im-
portant for many children and for their families is the appearance of the
chair: its color and structure, as well as how the child looks when seated in
the chair. Certainly a child who has a colorful, well-constructed chair in good
repair is more likely to receive the same kind of positive response from
friends, acquaintances, and strangers as the child who is well dressed and
clean. A child who is in a drab, poorly maintained, and poorly constructed
wheelchair often elicits the same type of response as the child who is taken
into public wearing clothes that are worn, dirty, and badly coordinated.
Insurance companies and government agencies will usually purchase one
wheelchair every three years for a growing child. For this reason, growth
needs to be considered when selecting a chair, and parents and the child
must understand that the wheelchair will need to last for three years. If a
power wheelchair is being purchased, a manual chair should be purchased as
a backup using the same prescription. Social service personnel can be help-
ful in locating funding for purchasing chairs, but occasionally purchases will
need to be organized through community groups such as the local chapter
of the United Cerebral Palsy Associations or the Variety Club, or possibly by
community fundraisers.
Another important aspect to consider when purchasing a wheelchair is
how it will be transported. If the only transportation available is an auto-
mobile, the size of the trunk needs to be considered. All chair inserts need to
be removable. If your child goes to school on a school bus and rides the bus
seated in his wheelchair, you need to make sure that the wheelchair is ac-
ceptable for bus tie-down. Only a few wheelchairs have been crash-tested,
and as soon as a customized seating system is added, each one becomes
unique. Be sure that a headrest and an automotive-style seatbelt (not Velcro)
are added to the wheelchair for safety. It is also important to understand that
a wheelchair seatbelt is not certiWed to be a primary restraint when traveling
in a vehicle. An additional seatbelt connected to the vehicle that goes around
the passenger is necessary for safe transportation.
As mentioned, most wheelchairs for children can be expected to last ap-
proximately three years, though there are a number of wheelchairs that are
marketed as being able to expand from age 3 to age 30; in other words, to go
from infancy to adulthood. Here is the reality of this situation: it is virtually
impossible to manufacture a wheelchair that Wts adequately and is not
overwhelmingly large and bulky for the 3-year-old which would not be in-
adequate by the time he is even 8 or so years old. It is extremely unusual
for a wheelchair to last more than Wve years in childhood. Plan on making a
wheelchair purchase every three to Wve years until your child is fully grown.
A child should be checked every six months or as needed to make sure the
choosing and using car seats ♦ 309
Wt of the wheelchair meets his or her positioning needs. There are several
ways growth is built into a wheelchair:
1. Most wheelchair frames are expandable in depth, and a few in width;
expansion requires replacing parts and seating components if a new wheel-
chair frame is not recommended.
2. Inserts into a wheelchair should be measured to adjust in seat depth
and back height so that only adjustments—not replacements—are needed as
the child grows.
3. Wheelchair bases should be measured to be about 2 to 3 inches wider
than the hip width to allow for some growth. If the base is wider than this,
a child who self-propels will not have the best access to the rear wheels and
will lose stability. Remember, although provision for some growth can be
built into the chair, signiWcant changes in the child’s size, such as signiWcant
weight gain or a growth spurt, can’t always be anticipated.
Choosing and Using Car Seats

Most states have passed laws requiring that children under
certain ages be transported on roads only in approved car seats.
The purpose of this regulation is to provide a means of restrain-
ing children for their own safety during motor vehicle accidents.
Car seats protect children with disabilities, as well; in fact, they
can be vitally important for children with cerebral palsy, since
many of them do not have natural protective mechanisms be-
cause of poor muscle control and coordination. For many young
children with CP, the standard approved car seats provide ade-
quate protection up to age 3 and 4. For the child with poor head
control and trunk control who needs supportive seating, how-
ever, the medical and transportation department–approved car
seats should be used.
Wheelchair manufacturers often state that a speciWc chair can
be used for everything from a car seat to a bathroom seat to a feeding seat.
This scenario sounds good in advertisements, but the reality is that wheel-
chairs are wheelchairs, and, while they may be used for feeding chairs, they
do not work well as car seats, and few parents use any of the systems that are
marketed as dual-purpose systems. Parents generally Wnd these seats to be
too large, too clumsy, and too complicated to remove from the wheelbase
for car use. It is very diYcult to lift a 50-pound child out of a wheelchair, re-
move and secure a 40-pound wheelchair seat as a car seat, and then lift the
child back into the car seat. For the child who has signiWcant trouble with
trunk support, it is best to purchase a separate car seat that always remains in
the vehicle in which the child travels.
The other alternative to using a car seat is to use the child’s wheelchair by
placing it in a van and tying it down. With approved wheelchair tie-downs

and adequate restraints in the wheelchair, the child is extremely safe. If the
child is evaluated in a wheelchair clinic, the issue of vehicle seating should be
addressed with respect to the child’s speciWc needs and the vehicles in which
the child will usually be riding. Obtaining funding to purchase adequate car
seats may be diYcult, since very few insurance companies or government
agencies will pay for an adequate car seat.
Here are several diVerent options when considering vehicular transport:
1. Standard car seats available at department stores should be used if the
child meets the size and weight criteria. Additional foam or towels may be
padded inside the car seat’s cover or placed along the child’s body to provide
extra support, especially to the head or trunk.
2. If the child exceeds the weight limit for a standard car seat, there are a
number of car seats that are available through durable medical equipment
dealers that may hold up to 100 pounds. Additional support can be added to
these seats, too, as long as the basic structure of the car seat is unchanged.
3. If a child has good head control and fair trunk control, an option may
be to supplement the standard lap/shoulder belt with a harness specially
available for transport. These harnesses should not be used by the child who
requires total positioning, however, since their primary function is to pro-
vide lateral and anterior trunk support.
4. The child’s own wheelchair, with the proper tie-downs, may be the
best alternative if a van is available. Remember, for additional safety, some
type of chest harness as well as an approved seatbelt and headrest should be
added.
About Wheelchair Maintenance

A wheelchair, whether it is motorized or manual, requires routine main-
tenance and care to keep it in the best condition, just like an automobile or
a bicycle. Several parts of the wheelchair must be checked to ensure the
best use. In order to maintain a wheelchair, it’s important to use the recom-
mended tools and cleaning supplies. Here are some products that you’ll
want to keep on hand:
• auto paste-type wax for metal frame
• mild soap
• vinyl and upholstery cleaner
• distilled water for batteries
• baking soda for battery terminals
• oil (30 weight, not designed for autos) for lubricating
• tire pump
• Xat and Phillips screwdrivers
• adjustable wrench (or socket set), 7⁄16″ and 1⁄2″ common
about wheelchair maintenance ♦ 311
• spoke wrench
• set of standard Allen wrenches, usually 5⁄32″ and 3⁄16″
• hammer
The guidelines presented below provide a general overview of preventive

maintenance. You’ll want to consult your owner’s manual for speciWc infor-
mation about how to care for your speciWc model.
manual wheelchairs
Monthly. Check tires for proper inXation (proper inXation speciWca-
tions are usually recorded on the sidewall of the tire). Most tires require be-
tween 50 and 65 pounds per square inch; high performance tires may need as
much as 120 psi. Check tires for cuts, Xat spots, and wear.
After checking the tire pressure, check the wheel locks. They should en-
gage and disengage easily. Over time, they tend to loosen and slide away
from the tire (especially solid tires), and some tips that contact the wheel
may also wear so the wheel locks no longer hold. Do not use wheel locks as
brakes!
If wheels are spoked, check to see whether spokes are loose or bent. They
can be tightened with a spoke wrench or replaced. Loose spokes often are
the main cause of wobbly wheels.
Clean metal parts to remove dirt and to avoid rusting. Tighten nuts and
bolts, especially on moving or swing-away parts.
Every six months. If the wheelchair has a cross-brace, lubricate center
bolt and tube. Wheels with quick-release axles should be popped oV and
lubed. Check the bearings; remove dirt, hair, and other materials from nuts
and bolts (especially on removable or moving parts). Check for rust.
battery-powered wheelchairs
Power wheelchairs should be inspected by an authorized dealer once or
twice a year for a “tune-up.” An authorized dealer can also check the voltage
at the posts to determine whether the batteries are too old.
Wheelchair batteries should be deep cycle. They generally last for 300 to
500 charging cycles, which may be equivalent to between 10 and 18 months.
When charging batteries, be sure that you are charging them at the proper
setting (the setting is lower for gel batteries than for acid batteries). Most
charges are automatic—they shut oV when the battery is fully charged.
Unsealed acid batteries must be handled with care. Keep any unsealed
battery away from Xames or sparks. Don’t tilt it. Wear a mask and goggles,
and charge the battery in a well-ventilated area. Most power wheelchairs now
come with gel batteries. These batteries are recommended because they are
safer to use and require very little maintenance.
Keep the water in the battery at the correct level, adding only distilled wa-
ter as needed.
Inspect case terminals and clean with baking soda, if needed, or medium-
grade sandpaper or a wire brush.
Gel batteries don’t require the same amount of maintenance. They
charge faster and they are safer, but they usually cost more and don’t last
quite as long.
When replacing batteries, replace both of them at the same time.
inserts
If you are using a seat insert that is separate from the wheelchair, every 3
to 6 months you need to check whether all the attaching hardware is in place
and is tightened, and check the insert for rips and tears. Be sure that the in-
sert can be easily removed, that it secures to the wheelchair properly, and
that the wheelchair folds smoothly when it is in place.
Pressure Management Awareness

Most of us don’t think about repositioning ourselves while sitting at our
computer, or getting up from our chair to simply move around, though we
do it automatically. We all need to change positions to manage the pressure
points throughout our bodies. For some, changing positions is not that easy.
For children who use wheelchairs, the need to change positions or relieve
pressure, particularly on their buttocks or ischial tuberosities, is critical. If
pressure is not relieved, skin breakdown or pressure sores can occur.
A primary factor contributing to pressure sores or skin breakdown, par-
ticularly as it relates to positioning in a wheelchair, is immobility, or the lack
of movement within the chair. Poor distribution of pressure across the seat-
ing surface or seat cushion can contribute to skin breakdown, as can shear-
ing or friction forces as the child transfers in and out of the wheelchair. Den-
ervated tissue (the loss of sensation) can also contribute to skin breakdown
secondary to reduced blood Xow to that area of the body, though this is not
a common problem in children with CP. Far more common in children with
CP is the lack of subcutaneous tissue due to poor general nutrition, mean-
ing there is no “padding” on the child’s buttocks or legs to provide some
cushioning. Another contributing factor is postural changes in the body that
alter the pressures distributed throughout the body. In a typical seating and
mobility system, the seating components are not “dynamic.” In other words,
as one’s posture changes, the seating components do not accommodate au-
tomatically. Consideration needs to be given to adjustment of the seating
and positioning components within the mobility system to accommodate
for changes in the body following orthopedic surgery.
When a child in a wheelchair has skin breakdown, seating specialists use
tools to help determine the possible cause of skin breakdown when the
pressure management awareness ♦ 313
wheelchair is considered a likely culprit. Among these tools are several pres-
sure-mapping systems that provide pressure information relative to posture.
These systems involve a mapping surface consisting of thin resistive semi-
conductive polymers sandwiched between highly conductive fabric. The
changes in resistance which result from the diVerent pressures on the semi-
conductor are interpreted by the Interface module and relayed to the com-
puter, where they are displayed as an array of colors and pressure values. This
provides immediate information to the clinician to help determine whether
the seating surface is contributing to skin breakdown.
Pressure-mapping systems provide the clinician with the ability to com-
pare diVerent seating surfaces or cushions in an objective manner. In addi-
tion, they provide education to the user by graphically showing the eVective-
ness of weight-shifting interventions. Pressure-mapping systems provide a
tool for conWguration of seating systems for the child who is more prone to
skin breakdown. Keep in mind that this is only an assessment tool. This is
not something that is required on every evaluation or with every recom-
mendation for a new seating system.
Ultimately, good pressure distribution and pressure relief techniques will
greatly reduce your child’s chances of skin breakdown. There are many vari-
ables that factor into the successful management of skin and pressure sores.
Always consider the risk factors of pressure sores, including peak pressure,
friction, impact injury, heat, moisture, posture, immobility, sensory loss,
body type, nutrition, infection, incontinence, and disease. One or more of
these factors may be the reason for skin breakdown in your child. These are
better dealt with in advance of an actual breakdown, rather than trying to
heal one after it has occurred.
Choosing a Stander
A stander is a device that helps a child stand. If the child is not standing
between 18 and 24 months, it is necessary to start a child standing even
when she does not have adequate head or upper body control to stand alone.
Standing is important because it allows the child to do some weight bearing
through the legs, which in turn helps make the bones stronger and stimu-
lates the development of motor coordination and head control. It also al-
lows the child to adopt a position diVerent from sitting or lying, and many
children interact better with their environment when they are standing up.
Standing is strongly encouraged for all children, regardless of how severely
involved they are. The beneWts are present in many areas, from improving
bone size and strength to posture, breathing, and bowel function, as well as
preventing muscle tightness from sitting too long.
The length of time in the stander will vary greatly, depending on how the
child responds to it. A good beginning is to start out in the stander for 10 to
15 minutes, with an attempt to gradually work the time up to an hour twice
Prone stander
a day if the child tolerates it. The child should not be left in the stander if he
is fatigued, crying, or uncomfortable. Music or television can often make a
child’s standing experience more pleasurable.
If the child has very poor control of her feet, a pair of ankle-foot orthoses
(AFOs) will help support her ankles. Other bracing is not necessary, since
the legs can be strapped into the stander.
Each of the diVerent types of standers—prone, supine, sit to stand, and
Parapodium standers—is used in a speciWc situation. Most have the ability
to adjust the angle of the stander and thus add or eliminate levels of support.
It is important to remember that the stander ideally should be used in the
most upright position and with the least amount of support that the child
can tolerate. An angle of more than 30 degrees from the vertical position al-
lows very little weight bearing. An upright position allows the child to work
with their head and trunk in the most functional position.
A prone stander has pads and support in front of the child. The amount
of support can vary, coming up to the child’s chest or only up to her waist.
The child leans forward in the prone stander. Often a tray is attached at the
front of the stander and the child can put her arms there and play with toys.
Most prone standers allow the angle of standing to be adjusted from very
low to nearly upright. The child who does best in the prone stander has at
least partial head control. This child often has some diYculty with upper
body support, but a prone stander helps her support her upper body.
In contrast to the prone stander, the supine stander has pads and support
behind the child. The supine stander may be beneWcial to caregivers with
large or heavy children. The supine stander often allows for easy bed to
stander transfers when placed in the horizontal position. Once the child is
secured, the caregiver can adjust the mechanism to get the child into the
choosing a stander ♦ 315
Supine stander
most tolerated vertical position. The supine stander is a good option for the
child with poor head control whose head often falls forward in the prone
stander. The supine stander is also a good choice for children whose knees
do not straighten completely. With some padding placed behind the knees,
the supine stander works well for this type of child.
A sit-to-stand stander is a new type of stander. It allows a child to be trans-
ferred into the stander from a wheelchair or bed in the sitting position. Once
the child is strapped in, a mechanism is used to transform the stander from
a sitting position to an upright position. Sit-to-stand standers are excellent
for heavier patients. However, they tend to be very costly and do not pro-
vide the best support.
A “Parapodium” stander is a stander that has a base in which the child’s
legs can be strapped in up to the waist. The child stands straight upright; al-
though the stander may provide slight support around the chest, most of
these standers support only the waist or the bottom of the chest. In general,
this type of stander is a poor choice for children with cerebral palsy because
it provides only minimal upper trunk support. Children with CP have poor
upper body control, and end up falling forward and leaning against a strap
or the tray.
Standers are expensive to buy from a medical equipment dealer. How-
ever, many health insurance companies will pay for standers. Parents may
wish to investigate the diVerent designs that can easily be made out of ply-
wood and upholstery. Physical therapists are often excellent resources for
counseling parents on the best type of stander for a particular child. They
also often have demonstration units. Trying out various units before decid-
ing on which one to purchase can be extremely beneWcial.
About Walkers and Gait Trainers

To help a child with cerebral palsy begin walking, a walker is often help-
ful. This is because the muscles of the body and extremities lack the coordi-
nation, strength, and stability needed to help keep the body upright while
stepping. There are no absolute indicators for initiating the use of a walker,
though there are a few motor control activities that seem to be necessary to
be able to start using a walker. Being able to hold up one’s head independ-
ently, sitting in a chair with minimal support, and being able to stand and ac-
cept weight through the legs are a few of the basics that are needed. The child
also needs to be able to guide the direction of the walker using his hands and
to see where he is going for safety reasons. It is also helpful if he demon-
strates an ability to maintain some weight on one leg while stepping with the
other. As with standers, the goal is to have the child walking with minimal
support and, at the same time, to support some of his body weight while be-
ing properly aligned. Therefore the child’s skills need to be matched to the
appropriate walker. This is best done by having the child evaluated in the
proposed piece of equipment. There are many styles of walker, as well as ac-
cessories for each walker, to maximize the child’s ability to use it.
The most supportive type of walker is the “gait trainer.” The trainer is
most often used as a rear-facing walker. The design is based on the idea that
the child will stand more erect if he cannot push the walker too far in front
of him, and if he has to push up on the hand supports to keep his body up-
right. It can also be made into a forward facing walker by switching around
the foot pieces. This type of walker oVers a variety of levels of trunk and
pelvic support. It may have a seat for a child who tends to collapse into Xex-
ion and guides to keep the legs from crossing and to control step direction
and step length. Using the supports at the trunk and pelvis as well as the seat
option can also help the older child who is large and diYcult for the parent
to control, but who has the desire to walk. These options oVer trunk stabil-
ity to align the pelvis over the feet. The wider base makes it less likely that the
walker will tip over but it is more diYcult to maneuver in the home. For the
younger child these types of support may be assistive in bringing the child
upright over her feet and beginning the action of stepping. To maximize the
walker’s usage, it is crucial that the child have the desire to walk and the abil-
ity to initiate stepping with a weight shift. The walker can also be used with
just the pelvic guides and special arm supports for minimal alignment assis-
about walkers and gait trainers ♦ 317
tance. There are a few hand and forearm styles to choose from for support
and guidance. There are multiple wheel features to control direction and
speed. The gait trainer has many diVerent ways for your child to use the
walker, and many accessories, which can be added or deleted, as needed, to
Wt your child’s ongoing needs.
Like the gait trainer, the more standard walker helps a child walk, but with
less assistance for alignment and more help for balance and weakness of the
legs. This type of walker is similar to the older person’s walker that you may
be familiar with. It can have from 2 to 4 wheels and may be made of metal.
Many children with cerebral palsy use the walker in the rear-facing position
to help keep their hips straight and their bodies upright. The gait trainer can
have a pelvic guide that assists in keeping the pelvis centered over the feet. It
can have a seat for a child with limited endurance, though it will not prevent
her from collapsing. This seat is posterior in the walker frame and must be
manually adjusted. A variety of wheel options help to control the walker’s
stability, speed, and direction. The wheels can have drag to decrease the
walker speed for the child who relies on its stability while stepping, or it may
have wheels that prevent the walker from moving backward when the child
pushes on it to step forward. Increasing the number of wheels to all four
posts may help the child who has the need for increased speed and eYciency.
The walker can have swivel wheels to enable the user who has good balance
and weight shift control to turn and adjust the walker simultaneously while
walking.
Once the child is able to bear weight on her legs and demonstrates a de-
sire to step, a walker evaluation, whether it is for a gait trainer or standard
walker, is appropriate. Determining the appropriate walker for your child is
crucial for her success. The correct walker is determined by knowing your
child’s speciWc needs, and matching these needs with speciWc equipment.
Correct selection of the walker and its accessories will maximize the support,
eYciency, and usage of the walker.
About Braces
When your physician prescribes a brace (also referred to as an orthosis) for
your child, be sure to Wnd out its intended purpose. This will help you ex-
plain to your child why he must wear the device or, if the need is not severe,
will help you decide on occasion to let your child go without it. Ask the
doctor how many hours each day is it to be worn, and exactly when during
the day—for instance, in the daytime, at night during sleep, when standing,
when sitting, or when engaged in physical activity. Ask the orthotist who
made the brace to tell you how to clean it.
Other questions you may want to ask your doctor include the following:
How is the orthosis to be applied? Where in relationship to the joint is the
orthosis to be positioned? For instance, if my son has a knee brace, speciW-
cally where should the brace be positioned relative to his kneecap? Can the
device be worn when exercising, or might that be a problem?
Skin care is very important for someone who uses an orthosis. You’ll need
to check your child’s skin periodically for any sign of pressure, such as red-
ness, blistering, or an opened area. Notify the doctor or the orthotist if skin
problems occur. Generally if this happens the child must be examined by the
doctor, who will evaluate the orthosis’s Wt. Because some problems that re-
quire the use of an orthosis change over time, it’s possible that the child has
outgrown the appliance. Sometimes, too, the materials in the orthosis break
down after longtime use, which means that the orthosis is no longer capable
of delivering the performance for which it was initially intended. Any sign
of skin problems or problems with the brace itself need to be evaluated by
the physician.
DiVerent insurance companies have diVerent options regarding how
many orthoses they will pay for in the life of an insurance policy. To keep re-
placement costs to a minimum, some braces are designed to grow with the
child to a limited extent. Parents can help by keeping the brace clean and in
good working order.
care and maintenance

Cleaning and lubrication. A brace may be made of metal, leather, or
certain plastics, or a combination of these. Braces made of these diVerent
materials require diVerent kinds of care. Your child’s orthotist and physician
will give you instructions for keeping the brace in good working order, but
here are some general tips to help you out.
To keep metal parts in smooth running order, keep them free of dust and
dirt, and lubricate them periodically. Leather parts also require periodic
cleaning. Ask your child’s orthotist what cleaner he or she recommends.
Plastic braces should be washed with mild soap and cool or lukewarm wa-
ter. Some plastics change shape when they are exposed to heat, so it’s im-
portant to keep the brace in a cool place. Leaving it in an automobile in
summer months is not recommended, because the inside temperature of a
closed-up automobile in the summer may be high enough to soften the plas-
tic brace and cause it to change shape, thereby making it useless.
Labeling. Orthoses are very expensive, and therefore in addition to
keeping your child’s braces clean and in good working order, you need to
make sure that they are carefully and indelibly labeled with the child’s name.
This is especially important if your child participates in activities with other
children who have similar assistive devices, since caregivers or school per-
sonnel will Wnd a proper label essential in returning the devices to their own-
ers. You should also label the orthosis to indicate which part of the body it
will be used on. Use labels like “inside left foot,” “outside right wrist,” “top
of back,” and so on.
choosing the correct shoes ♦ 319
Instructing others. If you know that someone else is going to apply the
orthosis to your child, give that person instructions. Explain how the brace
is supposed to Wt and how it is to be applied. Do not assume that anyone else
has been given information about your child’s brace. No one knows as much
about your child’s particular brace as you do, so you need to share this in-
formation to be certain that your child is beneWting from wearing the brace.
Choosing the Correct Shoes

When choosing an appropriate shoe for the child with cerebral palsy, par-
ents have many options. They will want a shoe that is as attractive as pos-
sible, of course, and one that takes the child’s special needs into account, as
well. Many children with CP need to wear orthopedic shoes (also called cor-
rective shoes), but many do not. An orthopedic shoe is a special type of shoe,
usually made of heavy leather extending above the ankle. It typically has a
rigid sole and sturdy construction to provide support to the foot. It may
have a straight last, which means that it does not have the normal inside
curve. Some of these shoes are made with special arch supports.
An extremely heavy and rigid and sturdily built shoe was considered es-
sential footwear for all children just one generation ago. The theory was that
these shoes would ensure that children developed well-balanced feet. It has
subsequently been shown that children without disabilities have no need for
special shoes or foot support. The large number of orthopedic shoe manu-
facturers have as a result been severely restricted in their ability to sell shoes,
and to compensate they have targeted the population of people with dis-
abilities. The well-built athletic or running shoes on the market today, how-
ever, are constructed in such a way that they provide equally good support
to the foot. They are well constructed, with soft arch support and very ade-
quate ankle support.
The main reason for a child to wear heavy orthopedic shoes is to permit
him to wear a metal brace attached to the shoe. These shoes are built of very
sturdy leather and can be disassembled or have lifts and other devices added
very easily. If a decision is made to use metal braces instead of the more com-
monly used plastic, then the orthopedic shoe is usually necessary. Except for
use with a brace, there are few reasons today to prescribe orthopedic shoes
or any other corrective shoe for children with cerebral palsy. In fact, the
shoes that are best for these children are the same shoes that are best for other
children, primarily athletic shoes that have soft soles made of rubber to pre-
vent slipping and a moderate arch support that is soft so that it won’t hurt
the foot.
When choosing an athletic shoe for your child, consider that the material
composing the upper shoe may be soft leather, synthetic, or a nylon fabric
material, all of which provide adequate support to the foot. These shoes very
nicely accommodate inserts, which may be specially made in some circum-
stances to Wt completely inside the shoe, as well as the more commonly used
AFO. If you are searching to buy shoes to Wt over AFOs, it is important to
look for shoes with a tongue that goes as far out as possible on the toe box.
Shoes can be laced out as far as possible to allow the shoe to be opened up
and provide much better accommodation for the brace to Wt into. This
makes it much easier to take the shoes on and oV with the brace. Extremely
lightweight canvas shoes are ideal for this.
The main problem with standard orthopedic shoes is that they are very
heavy. They also usually have leather soles that do not provide the kind of
traction that rubber soles do, and they look unattractive, as well. They tend
to draw attention to children with disabilities and make them stand out as
being diVerent. Regular shoes help promote an appearance of normalcy,
which is especially important for children who are in regular schools, where
wearing the latest style or fashion can provide a signiWcant boost in self-
esteem. Personal appearance is also important for the public impression of a
child who is not walking but is in a wheelchair.
The most important concern for children’s shoes is that they be large
enough so that there is plenty of room at the toes. The shoes should not
cause the child pain or discomfort when he walks. Whether they are ortho-
pedic shoes, athletic shoes, or high-top hiking boots, the main goal of shoes
is to keep the feet warm and provide a stable foundation for the child to walk
on without hurting his feet.
Increasing Independence with Ser vice Dogs

Well-trained service dogs provide increased independence to physically
challenged individuals such as those with cerebral palsy, as well as providing
an emotional outlet for the owner. These dogs are trained and supplied by a
number of organizations, most of them nonproWt organizations. A person
receiving a service dog is asked to make a contribution, but the cost of train-
ing the dog is far more than the contribution—the nonproWt organization
makes up the diVerence.
Most organizations provide dogs to children as well as to adults, provid-
ing that the recipient can accept the responsibility of owning a service ani-
mal. The organizations providing dogs are very careful to select healthy dogs
that are well suited for their role.
increasing independence with service dogs ♦ 321
To prepare a dog for service, the organization Wrst gives the dog lessons
in obedience. Once the dog has been obedience-trained, it receives general
service training, including training in retrieving dropped objects, taking
items from shelves, opening doors, and paying cashiers with a specially de-
signed wallet.
Many recipients have very special needs, such as a need for the dog to fol-
low commands given through an electronic communicator. After an indi-
vidual has been matched to a speciWc dog, the dog undergoes additional
training to enable it to accommodate the recipient’s special needs. The dog’s
soon-to-be owner also undergoes training in how to handle and care for the
dog. The organizations that supply dogs provide counseling to help the an-
imal’s owner cope with the separation that accompanies the dog’s need for
retirement or the dog’s death.
There are several organizations that provide and train dogs throughout
the United States. Call the Delta Society at 1-425-226-7357 (PaciWc time) for
information about the organization nearest you. If you live in the mid-
Atlantic states, you can call Canine Partners for Life, in Cochranville, Penn-
sylvania, at 1-610-869-4902.
Managing the System

Caregivers can be either victims of the system or survivors of the system.
By “system” we mean any organization whose rules and regulations may on
occasion interfere with your ability to protect your child’s interests. The sys-
tem might be an insurance company, your state’s Medicaid policies, the
school system, a community service, or even a local sports league. Individu-
als with disabilities have diVerent needs for services, and their caregivers’
ability to procure those services varies greatly.
Availability of services can diVer amazingly, even between neighboring
states. One insurance company might cover new braces for a child every six
months, while another claims to allow reimbursement for one set for a life-
time! One school might inform a parent that there are no services available
for a child who by federal law must have services provided; another might
be providing an aide for a child with barely discernible hemiplegia. People
with disabilities often have to contend with discrepancies such as these.
The Wrst step in managing these problems is to identify the speciWc sys-
tem that must be addressed and to represent your child wholeheartedly. If
you cannot personally be an advocate for your child, Wnd someone who can.
The individual need not be a person with a special education or a prestigious
position in society, but he or she does need to be willing to be persistent and
patient with ongoing attempts to frustrate his or her best eVorts. No matter
who represents a person with a disability, the eVort is made easier with good
organizational skills and hands-on experience gained as the eVort continues.
For children who are cognitively able, this is a responsibility they may as-
sume as they reach adulthood.
Here are some tips that will help you as you learn to manage the system.
Never make a phone call without a pencil and paper in hand. When ask-
ing questions about an issue, Wnd out and record the name of the individual
who gives you information, as well as his or her title. Record the date of
every phone call made and write a brief description of the information ex-
changed. If the answer to your inquiry is not acceptable, persist until you are
allowed to speak with the individual’s supervisor. Make it clear that you are
not going to give up. Try to do this calmly, because shouting only makes it
appear that you are losing control. Instead, speak Wrmly and in a way that
demonstrates that you will never get so frustrated that you’ll give up and
go away.
Don’t stop calling. The old saying about the squeaky wheel getting the
grease is extraordinarily appropriate when it comes to acquiring services. If
you believe that your child’s rights are being violated, do not hesitate to get
legal help.
Keep an ongoing list of individuals who have been helpful and their
phone numbers. Send a note to thank those who have been helpful and,
when appropriate, a letter of commendation to their supervisor.
Network with other parents and other caregivers, and help each other by
sharing strategies that have yielded results. It is particularly helpful to have
one designated person with whom to discuss issues and strategies. This may
be a therapist, a physician, a friend, or a relative.
Make use of community and church service organizations and local news-
papers. Often the problem you are tackling is one that another child is fac-
ing, and the publicity you get can help others. For example, if the school sys-
tem alters its treatment of your child because of your eVorts, and then the
local newspaper carries a story about this, other parents can learn about your
eVorts, the school system’s response, and the rights of their own child.
More than anything, don’t give up. Over and over we have experienced a
situation where an “absolute no” becomes a “yes” through persistence.
Working with a Case Manager

The case manager is the person who is responsible for coordinating and
facilitating the procurement of services from diVerent provider agencies in
both the public and the private sector. This person can serve as a single point
of contact in helping families obtain the services and assistance that they
need to care for the child or adult with cerebral palsy. The case manager may
be a social worker connected to a school or agency, or perhaps may be a
public health nurse or a nurse connected to an insurance company. He or she
may be appointed by the state or a county agency, be a staV member of a
hospital caring for a child, or be appointed by the insurance company cov-
ering the child’s medical expenses. When the case manager is a government
child welfare manager, it is also sometimes necessary that she or he be an ad-
working with a case manager ♦ 323
vocate for the child, to make sure that the child receives appropriate medical
attention.
While the case manager works to be sure that necessary care is obtained,
he or she also regulates care to avoid duplication of services or provision of
unnecessary services. Case managers have a good deal of control over the
medical care arrangements made by many people today. For example, sup-
pose that John Doe’s company provides XYZ health insurance, and that
XYZ health insurance assigns a case manager to each individual and each
family enrolled in the plan. If John’s spouse hurts herself when she slips on
the ice, the case manager will direct her to an orthopedist whose services are
approved for payment on the XYZ plan; will refer her for special studies, if
necessary, at an appointed facility; and, if physical therapy is suggested by
the doctor, will direct her to provider-approved therapists. The goal for this
type of manager is to manage health care to ensure cost containment.
Letters of Medical Necessity

In order to reimburse you for the purchase of equipment or other durable
medical goods such as braces, standers, seats, communications aids, toilet-
ing aids, and adaptive feeding devices, insurance companies or other fund-
ing agencies almost always require a letter of medical necessity from a phy-
sician or therapist. Such a letter must include the child’s diagnoses and a
description of why the equipment is needed, or the request will be auto-
matically rejected.
Because the letters written by physicians who are not familiar with insur-
ance company requirements sometimes don’t include all the necessary in-
formation, we’ve provided a sample letter here. To help avoid delay or has-
sle over reimbursement, you can make sure that the physician who writes a
letter of medical necessity for you includes the kind of information indicated
in this sample. If the physician follows this format, you will at least get a fair
hearing from the funding agency. You might want to photocopy this sample
letter and give your doctor a copy. She or he will send the letter on hospital
or oYce stationery.
Date
To Whom It May Concern (or, better, to a speciWc employee of the funding agency):
John Smith is a 5-year-old male with a primary diagnosis of cerebral palsy. He was
seen recently at the Seating Clinic at the Alfred I. duPont Hospital for Children in
Wilmington, Delaware for the prescription of a new seating system to meet his po-
sitioning needs.
John presents with the following: generally decreased tone in upper and lower ex-
tremities, and fair head and trunk control. He is dependent in transfers and mobility.
He is cognitively severely delayed. He is incontinent in bowel/bladder. He has fre-
quent respiratory complications and is subject to bronchitis and pneumonia, and he
receives chest therapy. He occasionally aspirates, he has increased skin sensitivity, and
he has seizures, but they’re generally under control with medication. He must have
a tilt-in-space wheelchair with appropriate positioning to provide safety and support,

and to facilitate breathing and feeding.
His current seating system is a Zippie tilt-in-space that is 3 years old. It no longer
meets his positioning needs because he has outgrown it, and the seating insert needs
to be changed to meet his current positioning needs.
The goals for John for seating are to maintain posture, protect skin, provide com-
fort, and enhance function. Upon evaluation, the Seating Team has recommended
that the following equipment be prescribed for John:
Action Tiger, desk arms, swing away detachable elevating leg rests, semi-reclining
back, special seat depth, stroller handles, custom positioners and lateral hip
guides, high brackets, solid seat with attaching hardware, solid back with attach-
ing hardware, shoe holders, heavy duty straps.
The Action Tiger is prescribed because it is a manual wheelchair for total posi-
tioning, and because he is dependent in mobility. The tilt is needed because he is hy-
potonic in head and trunk. He also has diYculty breathing, and it will help aid in
feeding. It will help with low endurance and pressure relief. The adjustable height
arms are needed to support the tray at the right height, for upper body support and
balance and for ease of transfers. The I-back will bring side supports in close to the
trunk, and the insert will Wt the full width of the wheelchair. The laterals will en-
courage midline trunk position, compensate for lack of trunk control, provide safety,
and contour around the trunk for better control. The chest harness is needed for
safety in transport by providing anterior support, preventing forward Xexion, and re-
tracting the shoulders. The headrest is needed for poor head control due to low tone,
active Xexion of the head, posterior lateral support, safety in transfers, and facilitation
of breathing. The clear tray is needed as a functional surface for schoolwork, for stim-
ulation, for upper arm and trunk support, and as a base for augmentative communi-
cation devices. The shoe holders are needed to control increased extension or spasms
in lower extremities, excessive internal rotation, and external rotation, and to prevent
aggressive behavior for safety. The anti-tippers are needed for safety.
Should you have any questions regarding these recommendations, please do not
hesitate to call me at (302) 651-4000. We hope that you will be able to accommodate
these needs in an expedient manner. Thank you for your cooperation and assistance
in this matter.
Sincerely,
Pediatric Orthopedic Surgeon
Make a note of the date the letter was mailed, and if after three or four
weeks you haven’t heard anything, it might be a good idea to telephone the
insurance company or funding agency and gently inquire about the status
of the claim. Make sure to Wnd out the name of the person you speak with,
and write it down. The person will probably tell you that the claim is being
processed; you can ask when you might expect to receive notiWcation of pay-
ment, and then call again if that date passes and you still haven’t heard any-
thing. It’s not generally a good idea to be seen as a nuisance or, worse, as an
irate client; but you will want to stay on top of the situation, and let the
agency know that you are doing so. If the agency remains unresponsive, you
can enlist your doctor’s assistance.
occupations for adults with cerebral palsy ♦ 325
Occupations for Adults with Cerebral Palsy

There are many options for teenagers and adults with cerebral palsy who
wish to work. Options will vary depending on the degree and type of dis-
ability. A vocational rehabilitation evaluation may help determine the type
of vocation/job for which the teenager or adult is best suited. For the high
school student, vocational counseling is frequently oVered through the school
system. Many communities oVer vocational rehabilitation programs for
adults who are physically or mentally challenged. People with diplegia whose
legs are aVected but who are able to use both hands eVectively have many
options, including using a computer to place orders for a company, doing
research, writing, manufacturing and repairing small engines, or teaching.
For the person with hemiplegia aVecting one side of the body, it’s best to
avoid bilateral dexterity speed tasks. Such a person would be able to perform
most of the jobs listed below, as would a person with quadriplegia, especially
those focusing on interpersonal verbal skills, such as receptionist, dispatcher,
or shipping clerk.
The following list is by no means comprehensive and is provided only to
give an idea of the variety of possibilities available. In choosing a career, any
person needs to take into account personal interests and aptitudes as well as
education and previous experience and other practical training.
Creative Child psychiatrist

Artist Community relations, hospital
Art therapist; director, hospital art
Information
studio
Communications specialist/associ-
Freelance photographer
ate programmer
Caricaturist
Senior computer analyst
Watercolorist
Systems programmer
Federal government Computer programmer
Civil service mathematician Librarian, rehabilitation center
Social Security claims represen- TV and radio surveyor
tative Systems analyst, hospital
Health Law and ministry
Patient care coordinator Attorney
Rehabilitation coordinator Minister
Director of volunteers, hospital Deputy probation oYcer
Speech pathologist; supervisor Private police agency, owner
Cytotechnologist Legal researcher
Clerk, hospital laboratory
Merchants and manufacturing
Speech therapist
Shop owner
Radiologist
Lift manufacturer
Clinical psychologist
Corporate president Self-employed draftsperson

Film producer Meteorological technician
Handi-Ramp, Inc., owner Technical writer, aerospace Wrm
Museum curator
OYce related
Research engineer
Hotel personnel manager
Translator
Insurance underwriter
Tutor
OYce worker, auto salvage em-
Liaison engineer, hospital
ployee
Telephone salesperson Services, home-based
Accountant Income tax preparer; bookkeeper;
notary public
Rehabilitation
Police and Wre dispatcher
Director, state department of reha-
Telephone answering service
bilitation
worker
Rehabilitation counselor
Nurses’ registry manager
Rehabilitation counselor, domiciliary
Video documentation producer
Psychologist
Equipment maintenance specialist
Program coordinator, adult devel-
Justice of the peace
opment center
Employment consultant
Social worker
Wake-up service caller
Employment counselor
Correspondent for small businesses
Medical social worker
Services, oYce-based
Sales, home-based
ChauVeur
Home products salesperson
Private employment agency owner
Ad specialty distributor
or agent
Map dealer
Greeting card salesperson Teaching and education
Typist and telephone salesperson College professor
General insurance agent Teaching English to deaf people
Magazine subscription telemarketer Elementary, junior high school, or
Brokerage Wrm owner high school teacher
Elementary, junior high school, or
Sales, oYce-based
high school principal
Travel agency owner or agent
Learning disabilities clinician
Radio announcer
Federal aid coordinator
Advertising salesperson
Hospital teacher
Account executive
Junior college instructor
Insurance agent
Cattle owner Writing
Stockbroker Technical writer and researcher
Magazine editor
Science and engineering
Newspaper editor
Engineering supervisor, aerospace
Wrm
about hospitalization ♦ 327
About Hospitalization
A child—or anyone—may be admitted to the hospital on either an elec-
tive basis or an emergency basis. For an elective admission, you decide to ad-
mit your child to the hospital so that he can undergo tests or have a proce-
dure or surgery done. You have some part in deciding when the admission
and procedure will take place, taking into account the demands of your own
life as well as the physician’s busy schedule. An emergency is something over
which we have little or no control—such as appendicitis or a heart attack. In
an emergency, your child would be admitted immediately to the hospital for
treatment.
Your child’s physician will tell you why he or she wants to admit your
child to the hospital. In addition to getting a detailed description from the
doctor, you might also ask for any literature on the procedures to be per-
formed, or ask for a reference list so that you can read about the procedures
or tests in the library. Once you feel comfortable with the treatment plan,
you should Wnd out what’s involved for your child and what your responsi-
bilities will be after the treatment.
Ask your child’s physician to sketch out very simply the test or procedure
that he or she intends to perform on your child. Be sure to ask your doctor
the following questions:
• Will my child be in pain during or after the treatment?
• What measures will be taken to alleviate my child’s pain?
• How long will my child be in the hospital? Will she be in intensive care?
• Will medications be prescribed for use at discharge?
The purpose for obtaining an explanation of the procedure is to allow

you to give informed consent—to sign hospital forms saying that you are
willing for your child to undergo the procedure, and that you understand
the possible risks and complications. It will also help you to care for your
child at home after the test or surgical or other procedure.
the preadmission process

Most hospitals have preadmission counseling that will answer many of
your questions about the admissions process, insurance issues, and accom-
modations. Ask speciWcally about the arrangements for parents visiting and
staying with their child, whether you may stay at your child’s bedside, and
under what circumstances you may not stay at your child’s bedside.
preparing your child for hospitalization

Whether going to the hospital is a new experience for your child, or
whether he or she has been to the hospital many times before, you must pre-
pare the child in advance for what is going to happen. The hospitalization
will be a more positive experience—will be less frightening and less trau-

matic—if the child has been told what to expect.
Generally speaking, the more a child knows about the reasons for hospi-
talization and all the details of hospitalization, the better oV he will be. Also
generally speaking, the more positive a parent or signiWcant other is about
the experience, the better the experience will be. With that in mind, parents
should realize that their child is a unique individual and must be treated as
such; in fact, professionals recommend that parents relate to their child in
the way that the child can best understand and accept.
Ask if there is anyone responsible for patient education in the hospital
where your child will be admitted who can advise you as to how to proceed
with preparing your child for admission. Your physician may know profes-
sionals who can assist you in preparing your child. Ask the oYce nurse or
clinic nurse for advice, since he or she may be able to help, or may direct you
to others who will be able to help you.
Pediatric hospitals sometimes have a child life department, which can
suggest the appropriate approach to take with your child. Nurses and social
workers may be helpful in advising you in this area and may be able to give
you information well in advance of the admission date to help you plan to
prepare your child.
The following guidelines for diVerent age groups are guidelines only;
based on your knowledge of your own child, you can tailor them to help
your child through this experience.
The young child. For a young child, preparation for hospitalization
should take place as close to admission as possible, preferably only a few days
before. Children between 1 and 5 years of age can handle only simple expla-
nations of what is going to happen, no more than three days before admis-
sion. Children learn best by imitation. For young children, use dolls as
models to describe the part of the body that will be aVected, and play with
puppets and “play” hospital equipment such as a stethoscope and a blood
pressure cuV. Read books about hospitals and medical personnel, and look
at pictures with your child.
Sometimes, answering your child’s questions will be the best way to ap-
proach the experience. A tour of the hospital the day before admission can
be beneWcial for everyone. A call to the hospital’s public relations depart-
ment may provide speciWc answers to your and your child’s questions about
the hospital, and can disclose whether there is a program for touring the fa-
cility. You’ll need to make arrangements for this tour ahead of time.
No matter how you approach communication, be honest with your
child. This age group needs to know that their parents will be waiting dur-
ing their surgery or hospitalization. They need to know that their parents
will be present, primarily because the younger child most fears separation
from family. If you must leave your child, tell your child that you will be
about hospitalization ♦ 329
leaving. And tell him when you plan to return. Never tell a child that you will
be right back and then not return. Give your child facts. For example, tell
him, “I will not be back tonight, but I will be back tomorrow to have lunch
with you.”
Middle childhood. Verbal explanations can be given about one week
before admission for a child of 6 to 8 years. This age group also beneWts from
the use of puppets and playing with hospital equipment. Also, children in
this age group are better able to tell you what they think will happen, and
you will be in a better position to correct any misconceptions for them. This
age group has a better notion of the concept of asking questions and having
their questions answered honestly, and parents can provide more details for
them than for younger children. Children at this age also are better able to
grasp concepts such as the length of stay, separation, and postsurgery issues
such as limits on activity.
Preadolescence. The child 9 to 12 years of age can handle explanations
given as much as two weeks before admission. Children in this age group
learn by logical thinking. They beneWt from clear verbal explanations and
from a variety of visual cues: Wlms, diagrams of body outlines with minimal
detail, and books and videotapes. This group enjoys handling equipment, and
they can more easily formulate a question about something they do not un-
derstand. Children this age beneWt from information about procedures, sur-
gery, and speciWc treatments. They also comprehend information about how
they can participate in their own care, and should be told about limitations
in activities which will be imposed by the treatment. They often beneWt from
visits by family and friends.
Adolescence. Children between the ages of 13 and 18 years beneWt from
having all types of information shared in a variety of ways as soon as the ad-
mission is scheduled. This age group learns well in peer groups. They are
able to handle many directions and rules. Use of correct medical terminol-
ogy and detailed information is important for this group. Questions should
be encouraged and should be dealt with in detail. The older child most fears
disability and a loss of body parts. They miss their friends and are worried
about death.
Try as much as possible to keep routines the same as at home, and talk
with the hospital staV about this to encourage them to help. Encourage your
child to bring a favorite toy or other object from home, and if possible allow
him to wear his own clothing in the hospital.
anticipating discharge: what you need to

know to prepare
The hospital may have a system in place to provide counseling regarding
what the child will need after being discharged. The person providing the
discharge counseling may be a social worker or a nurse, either of whom can

help you with the transition from hospital to home. Ask this person or your
doctor for details on the following issues as they apply to your child. You
may want to write down the answers on a note pad so that you can refer to
them later.
• Should I be doing anything before admission to help me prepare to man-
age my child at home? Should I arrange for a hospital bed, wheelchair,
potty chair, or anything else before admission, or will I have enough time
to prepare for special things while my child is in the hospital?
• Will there be anything diVerent upon the discharge of my child which will
cause him to be more dependent upon me than he was upon admission?
• What arrangements will be made to prepare me to manage my child at
home? Will my child need specialized care upon discharge which I can
provide? Will the nursing staV teach me to provide for my child’s new spe-
cial needs at home? If not, then who will train me? Am I permitted to in-
vite other family members to training sessions?
• Will my child require any specialized nursing care when she returns home
from the hospital? Who will help me arrange special care?
• Who should I call if my child cannot be comforted at home and I feel that
I need some advice on how to help her?
• Will special therapy be required during the hospital stay? Will this ther-
apy be required at home? For how long? How will therapy be arranged
for at home, and to whom may I speak for help and advice about this?
• Will special lab tests ordered during the hospital stay be required at home
too? How will I go about getting tests completed at home? Is there some-
one who can advise me about getting special lab tests at home? When will
I see the physician for follow-up?
• Will my child be able to walk or sit as she did before? If not, how long will
it be before she returns to her normal state? If not, how long will it be be-
fore we know how much diVerence there is?
• How long will my child’s activities be limited?
• When can my child return to school? Will she be able to use the usual
mode of transportation to school, or will special transportation be
needed?
On the subject of schooling, we should say that it is very important that

you notify your child’s school when your child will be hospitalized, and that
you explain the procedure that will be done. The school will probably ask
you for details about the hospital stay. If surgery is going to be performed,
they will want to know whether there are any limitations imposed which
they should be aware of, especially any restrictions on the child’s activity
which would aVect his activities at school.
keeping medical history records ♦ 331
Keeping Medical Histor y Records

Keeping a comprehensive but concise record of your child’s medical his-
tory is essential to the proper management of the child’s medical care. A child
with disabilities generally has a great deal of contact with health care per-
sonnel and may have undergone a series of surgeries and other procedures.
The child may be on multiple medications and the medications may need pe-
riodic dose adjustments. Keeping an up-to-date description of medical care
is extremely valuable in designing present and future care. A brief “parent
medical record” will also provide important information to emergency room
personnel in the event your child needs to be taken to the emergency room.
Because of the need for accurate, readily available medical information, the
American College of Emergency Physicians, in collaboration with the Amer-
ican Academy of Pediatrics, developed an “Emergency Information Form
for Children with Special Needs.” This form (reproduced on pages 332 and
333) contains essential information emergency personnel need in order to
make appropriate medical decisions. If you create your own brief record, it
should include the following information.
Parent’s Medical Record
1. Immunizations: up to date/missing ____________.

2. Allergies to medication, foods, pollens, etc.
3. Medical problems (for example, CP, seizures, cardiac, gastrointestinal,
diabetes, asthma).
4. As applicable: current medications and dosages; size and type of tra-
cheostomy; gastrostomy tube, supplier, and type and amount of feedings.
This list may be lengthy but is essential.
5. Current pediatrician and other medical or surgical specialists (for ex-
ample, neurologist or orthopedist) and therapists.
6. Ongoing record of height and weight/growth chart (include dates).
7. School assessments (most recent).
8. Documents to conWrm legal guardianship; insurance cards.
9. Record of surgeries (most recent Wrst):
Example: Date Procedure Surgeon Hospital Complication
2/2/04 spine fusion Miller duPont none
5/9/00 tonsillectomy Stone County bleeding
10. Record of hospitalizations:
Example: Date Reason Physician Hospital
2/6–2/11/03 pneumonia Bachrach duPont
3/5–6/5/90 premature birth Smith Lourdes
11. List of names and addresses of individuals to whom you wish a copy
of your child’s most recent health report to be sent. For example, when your
child is seen by his neurologist, the pediatrician should receive a report.
332 ♦
♦ 333
You should carry the parent’s medical record or emergency information

form at all times so it will be available during scheduled appointments as well
as in an emergency.
Although it’s a smart idea to carry a brief record with you, we recom-
mend that you keep a more extensive Wle at home. This Wle should include
copies of reports from medical, psychological, and developmental tests done
throughout the child’s life, and should be kept in chronological order.
The Wle should also include copies of the Individualized Education Plan
(IEP) and the Individualized Family Service Plan (IFSP), as well as notes
and reports from teachers and therapists, and copies of any correspondence
written on the child’s behalf. Without your written permission, such reports
cannot be given to you or anyone else. In April 2003, privacy and conWden-
tiality regulations of the Health Insurance Portability and Accountability
Act of 1996 (HIPAA) were implemented. Health care providers and health
care organizations have strict guidelines that must be followed to protect the
conWdentiality of “protected patient information.” Protected patient infor-
mation includes all identiWable information that can be used to identify a
patient including paper records, electronic records, and reports (including
reports from therapy, school, Individualized Education Plans, Individual
Family Service Plans, and verbal communications among providers, thera-
pists, teachers, and nurses). No information can change hands without
proper authorization. Consent forms must comply with the language in the
privacy and conWdentiality regulations. Parents therefore need to sign ap-
propriate HIPAA-compliant consent forms and must speciWcally state the
name of each individual who will be allowed access to their child’s health in-
formation, and speciWcally what information is permitted to be accessed.
Note that authorization forms are now required to have an expiration date
or an expiration of a speciWc period or event. This period can be determined
by the parent. If the parent wants information released after the expiration
date, a new authorization form must be signed.
In the Wle, include a list of contacts with their phone numbers and the na-
ture of your interaction with them, plus the outcome of the interaction. Also
keep a list of all health care and school contacts with addresses and phone
numbers, as well as information about insurance carriers and vendors of
equipment. Include a letter authorizing release of reports dealing with your
child which you might wish to be sent elsewhere. If you leave spaces for the
addressee and a description of the report and where it originates, you can
photocopy this letter and Wll in the blanks as needed.
There are many ways to keep all this information in order. Many parents
use their computer for record keeping. You do not need sophisticated com-
puter skills to enter this information. You can easily list medications on a
simple Word document and update this list whenever changes are made.
Medication allergies, feeding schedule, supplies, procedures, and appoint-
life planning process ♦ 335
ments are easily entered into the computer and can be printed out before a
doctor’s visit. Personal digital assistants (PDAs), which are handheld digital
computers, allow portability. The date book in your PDA can be especially
helpful when making follow-up appointments. If you do not have access to
a computer, you can use a Wle card system for telephone numbers, supple-
mented with a loose-leaf binder containing reports. Or you might want to
keep records in a Wle drawer or Wle box. If you take the time to set up the sys-
tem properly, adding new information will be easy. This kind of record keep-
ing will help you as you advocate for your child. If you become involved in
a parent support group, you might describe your system for other parents
who want to get started.
immunization schedule
Because children are not born with a natural immunity to diseases such as
polio, measles, and mumps, every child needs to be immunized against these
diseases, as well as others. Your child’s doctor will keep a careful record of
your child’s vaccinations, but you need to keep a separate record. Ask your
doctor for a booklet that you can keep updated. If you move out of town or
change doctors for any other reason, be sure that the doctor sends your
child’s vaccination record, along with other medical records, to the new doc-
tor. The most current immunization schedule can be found on the American
Academy of Pediatrics Web site under “Children’s Health Topics” or by call-
ing 1-847-434-4000.
Life Planning Process

To prepare a plan in a simple step-by-step procedure without feeling over-
whelmed by the process, families should know the 10 life-planning steps. If
these steps are followed with the assistance of a qualiWed special needs plan-
ner, the family will create a comprehensive plan that addresses the lifestyle,
legal, government beneWts, Wnancial, and care needs of the person.
Regardless of the age of the child or the severity of the disability, creating
a plan is critically important now.
1. Prepare a life plan. Decide what you want regarding residential needs,
employment, education, social activities, medical and dental care, religion,
and Wnal arrangements.
2. Write informational and instructional directives. Put your hopes
and desires in a written document. Include information regarding care pro-
viders and assistants, attending physicians, dentists, medicine, functioning
abilities, types of activities enjoyed, daily living skills, and rights and values.
Make a videotape during daily activities such as bathing, dressing, eating, and
recreation. A commentary accompanying the video is also useful.
3. Decide on a type of super vision. Guardianship and conservatorship
are legal appointments requiring court-ordered mandates. Individuals or

institutions manage the estate of people judged incapable (not necessarily
incompetent) of caring for their own aVairs. Guardians and conservators
are also responsible for the care and decisions made on behalf of people who
are unable to care for themselves. In some states, guardians assist people and
conservators manage the estate of individuals. Many parents who have chil-
dren with disabilities do not realize that when their children reach 18, par-
ents no longer have legal authority. They must petition the courts for ap-
pointment as a legal guardian. Choose conservators/guardians for today
and tomorrow. Select capable individuals in the event you become unable to
make decisions in the future.
4. Determine the cost. Make a list of current and anticipated monthly
expenses. When you have established this amount, decide on a reasonable
return on your investments, and calculate how much will be needed to pro-
vide enough funds to support her lifestyle. Do not forget to include disabil-
ity income, Social Security, etc.
5. Find resources. Possible resources to fund your plan include govern-
ment beneWts, family assistance, inheritances, savings, life insurance, and in-
vestments.
6. Prepare legal documents. Choose a qualiWed attorney, paralegal, or
certiWed legal document preparer to assist in preparing wills, trusts, power
of attorney, guardianship, living will, etc.
7. Consider a “Special Needs Trust.” A Special Needs Trust holds as-
sets for the beneWt of people with disabilities and uses the income to provide
for their supplemental needs. If drafted properly, assets are not considered
income, so people do not jeopardize their Supplemental Security Income or
Medicaid. Also, they do not have to repay Medicaid for services received.
Appoint a trustee and successor trustees (individuals or corporate entities,
such as banks). There are various types of Special Needs Trusts. Make sure
the person preparing your documents understands the diVerences and pro-
vides you with the right one.
8. Use a life-plan binder. Place all documents in a single binder and no-
tify caregivers/family where they can Wnd it.
9. Hold a meeting. Give copies of relevant documents and instructions
to family/caregivers. Review everyone’s responsibilities.
10. Review your plan. At least once a year, review and update the plan.
Modify legal documents as necessary.
Once you have decided to prepare a plan, Wnd someone to help you or
hire a professional planner. Referral sources are available through govern-
mental agencies, organizations, or local support groups. “Who will care
when you are no longer there?” is an overwhelming concern people with dis-
abilities and their families must address. Solutions are available. The next
step is up to you.
about casts ♦ 337
About Casts
Before taking a child in a cast home from the hospital or doctor’s oYce,
parents should receive detailed instructions in how to care for the child (and
for the cast) from the child’s doctor or another health care professional. For
example, the parent should Wnd out what physical limitations this cast will
impose: if the child is normally ambulatory, for example, will she be permit-
ted to walk with the cast? If she normally can sit on the toilet, will she be able
to do so in the cast, or will a bedpan be needed? Other questions parents
need to have answered include:
• Do I need to arrange special transportation home from the hospital, such

as an ambulance?
• When can my child return to school in the cast?
• Will I need to provide special care for my child and the cast? Who will
train me in how to perform this care, and when will the training begin?
• What are some problems a cast can cause that I can look for?
Once you’ve received instructions and training in taking care of a child in

a cast, and you and your child have arrived home, the following care tips
might be useful.
Bathing. The skin under the cast should not get wet. If your child can
walk in the cast and get to the bathroom for a sponge bath, let him do so. If
you need to bathe your child in bed, here are some tips:
1. Gather towels, a washcloth, a basin with water, soap, a soap dish, and
protective towels or Xannel-covered plastic bed protectors for the bed and
the cast. Use a bath sheet (a large towel) to keep your child warm during
the bath.
2. Wash the head, ears, and face Wrst, then all exposed skin beginning
with the chest and moving to arms, trunk, back, and legs. Wash the genitals
and buttocks last. Cover exposed areas with a bath blanket or dry towels.
3. Make sure along the way that you have removed all soap residue and
have dried the skin. Be careful not to get soap under the cast, since this may
cause itching. Do not use lotions or creams under the cast or near the edges
of the cast.
Tooth care. If your child can walk to the bathroom, allow her to brush
her own teeth. If not, you will need a spit cup or emesis basin so she can spit
out the contents of her mouth after she brushes her teeth in bed. If you nor-
mally brush your child’s teeth, you probably have your own eYcient tech-
nique and should continue with it.
Hair grooming and washing. If your child can get to the sink, help
him wash his hair over the sink or tub. Protect the cast with plastic to keep it
from getting wet. A plastic barber’s or hairdresser’s cape might serve the pur-
pose. If the child must be conWned to bed for a bath and hairwashing, you
may want to invest in special equipment that is commercially available to al-
low water from hairwashing to drain oV the bed. Check with local depart-
ment stores or home care companies for a listing of the products they carry
that make it easier to wash hair in bed. It may be possible to wash your child’s
hair in bed by funneling a plastic drape from around his neck into a plastic
container (a trash can or bucket), allowing the shampoo water to run from
the head, to the plastic, to the container.
Clothing. No special clothing is needed. Do not dress a child in a cast
in a way that will overheat him, however, since he may perspire and begin
itching. Loose, comfortable clothing is the best choice.
Cast checks and skin care. Casts should be checked daily. Report to
the doctor any changes in the cast or the skin. To check a cast, you’ll need to
use a Xashlight and your eyes, hands, and nose. Note the general condition
of the cast, and observe for any cracks, breaks, weakness, or damp areas. Ob-
serve whether the cast is getting tighter, either because of swelling under the
cast or because your child has grown since the cast was applied. A tight cast
can be very dangerous and must be reported to the doctor at once.
If your child is in a large cast such as a hip spica or body cast, you can feel
the skin with your hands and look with a Xashlight for any signs of secre-
tions, drainage, or skin irritation. Check for odors coming out of the cast.
Pay attention if your child complains of tingling and numbness, burning or
itching. Report any such complaints, as well as any sign of odor, secretions,
or drainage to your child’s physician.
For skin care, do not use lotions or creams under the cast, since they build
up and can irritate the skin. Plain 70 percent isopropyl rubbing alcohol, with
nothing extra in it, is used by many physicians to clean older children’s skin.
It can be used sparingly on the skin at the edges of the cast, since it will dry
better than soap and water. This technique should not be used on young
children, since it dries out the skin and can produce skin irritation.
Neurovascular assessment. Probably the most important task you’ll
do every day in connection with your child’s cast is to perform a neurovas-
cular assessment. This involves observing all casted extremities (or, in the
case of a body cast or a hip spica, all extremities) for the following: color,
temperature, swelling, sensation, numbness and tingling, range of motion,
and circulation. Immediately report to the doctor any of the following:
• swelling
• severe color change
• lack of capillary reWll (capillary reWll is indicated by the pink color return-
ing to the Wngertips after pressure is applied and then released)
• increased pain; strange feelings
• changes in skin or body temperature
about casts ♦ 339
Finishing the cast, or petaling the cast. This is a means of making

the cast edges smooth and free from scratchy edges and of preventing pieces
of the cast from falling oV. If the cast is Wnished with stockinette pulled
smoothly over the edge of the cast, nothing more needs to be done. If the
cast is not Wnished in this way, a variety of petaling materials may be used.
Cut moleskin or waterproof tape into strips an inch or two wide by three
inches long. Place these strips in an overlapping fashion with about one inch
of the tape inside the cast, sticky side against the cast, and the remainder
pulled tightly and placed on the outside of the cast. Carefully observe these
cast edges as the days go by, because some young children have a sensitivity
to the adhesive material on the petaling strips, and even though the sticky
surface is against the cast, there is enough sticky material at the petal edge to
cause some irritation.
Positioning. If your child is capable of changing her position on her
own, encourage her to do so. In any case, make sure that your child changes
position at least every two to three hours during the day and every four hours
during the night, to relieve the pressure of the cast on the various skin sur-
faces, and to avoid bedsores. This is especially important for the child in a
body or hip spica–type cast.
Bedpan use. If your child is in a body cast and must use a bedpan, fol-
low these steps in helping your child use the bedpan successfully:
1. Elevate the head of the bed, or use pillows to elevate the child’s head
higher than the hips. In this way, gravity can help drain urine and feces into
the bedpan.
2. Cut pieces of plastic about 8 by 12 inches which will be tucked between
the skin and cast. Turn the child to one side and insert the plastic between the
cast and the skin surface in the buttocks area, so that the pieces of plastic
overlap each other.
3. Place the rim of the bedpan against the cast. Center the child on the
bedpan. Funnel the plastic into the bedpan to prevent fecal material from
soiling the cast. Urine and fecal material will be diverted into the bedpan via
the plastic.
4. When your child has Wnished, remove the plastic from the edge of
the cast as you turn your child back to the side. Clean the genital area and
dry it well.
For the incontinent young child in a spica-type cast, place a sanitary napkin
or folded diaper for extra absorbency over the genital area, and then place a
diaper over that. For a young child, the material must be changed every two
hours; for the older child, the diaper must be changed every time the child
eliminates.
Using Nutritional Boosters

Because children with CP often have diYculty gaining weight and toler-
ating diVerent textures, caregivers may need to Wnd ways of supplementing
their child’s food intake. Concentrating the calories in the foods a child will
eat is a good way to increase the calories and protein in his or her diet. As
long as your child can tolerate them, you can add any of the following foods
to your child’s diet to increase the calorie and protein intake:
• butter, corn oil, margarine on bread, crackers, vegetables, rice, pasta, or
cooked cereal
• powdered milk added to regular milk (fortiWed milk) or used in cooking
• wheat germ
• puddings or custards (can be made with fortiWed milk)
• milkshakes, ice cream, yogurts
• cream soups, cream sauces, gravies
• sour cream, cheese
A general rule of thumb is not to give your child anything plain. If your
child eats blended food, add juice, gravy, or milk in place of water in the
blender.
A wide selection of nutrition supplements are available on the market to-
day. Most are milk based and lactose free. Recently, more juice-based sup-
plements have become available. The supplements can range from 30 to 60
calories per ounce. Most can be found at your local pharmacy or grocery
store. Many are Xavored and can be taken orally. For many children, taste is
the determining factor when it comes to deciding what formula to use. For
some children who are supported nutritionally by formula feedings, the ap-
propriate formula can be determined with the help of your pediatrician or
dietitian. Some formulas are very specialized for children who have prob-
lems tolerating tube feedings. Below is a sample of some of the products
available:
Milk-based formulas
• Carnation Instant Breakfast
• Boost / Boost Plus
• Ensure / Ensure Plus
• Kindercal
• Jevity
• Nutren Jr / Nutren / Nutren 1.5 / Nutren 2.0
• Pediasure / Pediasure with Fiber
• Promote / Promote with Fiber
• Resource / Resource Just for Kids
• Scandishakes
• Sustacal
managing tube feedings ♦ 341
Juice-based formulas
• Boost Breeze
• Enlive
• Nubasics
• Resource Juice Drink
Specialized formulas
• Neocate
• Peptamin Jr / Peptamin
• Vivonex / Vivonex TEN
Consult your insurance company to see if there is help with payment for
either oral supplements or tube feedings. You may also need a prescription
for the supplements and/or a Letter of Medical Necessity. If your child is
eligible for The Women, Infants and Children Supplemental Food Program
(WIC), this program may provide some of the formula for you. In some
states Medicaid or Medicare may help with payment.
Managing Tube Feedings

If your child is unable to gain adequate weight with oral feedings, or if
your child is at risk for aspiration either because of poor oral motor muscle
coordination or severe gastroesophageal reXux, an alternate method of feed-
ing may be needed. Tube feedings are given via a feeding tube surgically in-
serted into the stomach (gastrostomy tube or G-tube) or inserted into the
beginning of the small intestine (jejunostomy tube or J-tube). Both types of
tubes can come as a skin level tube (“button tube”) which lies Xat on the skin
or as a catheter. The catheter can be secured to the undershirt by wrapping a
piece of tape approximately 1 by 1 inch around a section of the tube and at-
taching a safety pin to the end of the tape. The safety pin can then be attached
to the undershirt.
Before your child is discharged from the hospital, be sure that you un-
derstand and are comfortable with the care of your child’s gastrostomy tube.
There are many diVerent types of tubes available, but you should be taught
how to care for the speciWc kind of tube that your child is using. Health care
specialists will teach you exactly how to feed your child through the gas-
trostomy tube, but here is an overview of gastrostomy tube feedings for you
to refer to at home.
types of feedings
There are two basic types of feedings. One is the bolus. In this type of feed-
ing, a speciWc amount of formula is given three or four times a day, much like
a regular mealtime. A syringe pump or gravity system is connected to the
tube, and formula Xows in over a period of between 15 and 60 minutes.
The other type of feeding is continuous. In this setup, formula Xows slowly
into the stomach or small intestine over a long period. A special pump is used
to measure precise amounts of feedings and to regulate the Xow of food. Je-
junostomy tube feedings are always given as continuous feedings.
You will need the following equipment:
• Food at room temperature. It will most likely be a commercially prepared
formula. Your dietitian will determine which food is best for your child.
• tap water at room temperature (to rinse the tube)
• a syringe
• a feeding bag
• tubing
• any special adapters speciWc to the tube used by your child
how to give a tube feeding

1. Gather equipment and be sure it is in working order.
2. Wash your hands.
3. Position the child so that his head is elevated. This can be done by po-
sitioning the child on your lap. If the child is older you can elevate the child’s
head by raising the head of the bed with pillows, a rolled blanket, or a wedge
under the child’s head and shoulders. You may also position the child com-
fortably in his wheelchair.
4. If a feeding bag is used, run the feeding through the bag and the at-
tached tubing.
5. Attach a syringe to the gastrostomy tube and Xush with water to be
sure that it is clear. (This preliminary water Xush may or may not be recom-
mended by your child’s physician. Follow his or her instructions.) If the tube
is occluded (blocked), consult your physician for further instructions. Do
not force the Xush.
6. Remove the syringe from the gastrostomy tube and attach the feeding
bag and tubing to allow the bolus to go in or the continuous feeding to be-
gin. Use the special adapter required by some button tubes for either type of
oral hygiene: providing mouth and teeth care ♦ 343
feeding. You may use a 30–60 cc syringe without plunger to allow the feed-
ing to Xow by gravity. Continue adding to the syringe until Wnished, or
you should set the rate prescribed by your physician to run automatically on
a pump.
7. When the feeding is complete, Xush the tube with water in the amount
speciWed by your child’s physician.
8. Pinch or clamp the tube before removing the syringe or tubing. Clamp
or cap indwelling tubes. Remove the feeding adapter from the button tube
and snap the plug in place.
9. Observe the child for abdominal distention and vomiting. Notify the
doctor if this becomes a problem. There are certain venting procedures re-
quired for certain tubes; your child’s physician will describe these to you.
10. Clean the syringe in warm soapy water. Rinse until clear.
tube feeding information card

Many parents Wnd that keeping a feeding tube information card is help-
ful. We suggest that you record the following information on a Wle card and
keep it handy. This way you’ll be sure to have all relevant facts ready at a
glance, should you need them.
Child’s name:
Tube speciWcations:
size:
type:
balloon volume:
button size:
dates tube replaced:
Surgery date:
surgeon: telephone number:
specialist: telephone number:
Feeding:
type:
amount:
water:
Feeding instructions:
feeding times:
amount of each feeding:
Pump setting or rate:
Flush with cc water before/after every feeding
Oral Hygiene: Providing Mouth and Teeth Care

Start oral hygiene in the Wrst year even before the child has teeth. Begin
by just wiping the inside of the child’s mouth with a moist cloth—this will
get him used to having his mouth cleaned. Toothbrushing should start by
age 18 months and can be initiated with soft brushes. Brushing should in-
clude the gums and tongue as well as the teeth.
The Wrst visit to the dentist should be between the ages of 18 and 24
months. At this time, the dentist will review the oral hygiene program you
are using and will help you resolve any frustrations you may have. Usually
x-rays will not be taken until later, but the main goal of the Wrst visit is for the
dentist and the dental hygienist to understand how your child will react in
the dental oYce and what his special needs are.
Toothbrushing is the most important daily activity in maintaining oral
hygiene, and it needs to be established early. Brushing should not be a
struggle for the parent or the child. Find a time of day when the child is usu-
ally in a good mood, and try to do it at the same time every day. Then you
can provide some reward for the child’s behaving well. Eventually, brushing
becomes an accepted part of the daily routine. Although it is advisable to
leave the child with a clean mouth overnight, brushing when the child
tolerates it best will provide the greatest opportunity for success in the
long run.
If your child has problems of head and trunk control, you need to posi-
tion him so that you can control his posture. This is usually done in the best
seating system the child has, such as his wheelchair. Choose a soft multi-
Xuted nylon brush and use both circular and up-and-down motions. If the
child will not tolerate a toothbrush, use a cotton-tipped swab or a soft wash-
cloth that has been soaked with a mildly abrasive toothpaste or with an an-
tiseptic solution. Eliminate gagging by watching where you are brushing
and avoiding areas that trigger the gagging.
As your child starts to brush his own teeth, monitor his technique and be
sure that it gets done. This is exactly like other activities of daily living, such
as bathing, where parents are often monitoring children between ages 5 and
10 years. Schoolteachers can also provide excellent positive reinforcement in
the school setting.
Fluoride treatment is an important aspect of preventing cavities. Fluo-
ride can be taken as a Xavored liquid or chewable tablet, or as a mouth rinse.
Or it can be applied directly to the teeth by a dentist. The speciWc need for
Xuoride varies, depending on the amount that is in the local water supply;
however, many children with signiWcant disabilities do not drink much tap
water and will need to obtain additional Xuoride. Check with your dentist
or physician, since you will need a prescription for Xuoride.
Cavities can also be decreased by watching the diet. For example, fresh
fruits, and artiWcially sweetened soft drinks are preferred over cakes, candy,
cookies, and sugary soft drinks for the prevention of cavities.
Toilet Training Your Child

The most important factor in successful toilet training is the cognitive or
developmental level of the child, regardless of his or her chronological age.
Children can be successfully toilet trained if they have the developmental
toilet training your child ♦ 345
and cognitive abilities of a 2 to 4 year old. Physical barriers can be overcome

with adaptive seating so the child can be properly positioned on the toilet
seat. The child will need the help of a parent or aide at school to assist with
transferring from the wheelchair to the toilet seat.
Another important factor in successful toilet training is the attitude of the
parent, who must be relaxed and positive about the process of toilet training
and who must convey this attitude to the child.
Praising the child for success on the potty is crucial. But even before
toilet training can begin, both the child and the parent must be ready. Your
child may signal her readiness for toilet training in one of several ways. For
example, while urinating or having a bowel movement (or just before),
the child may become either fussy or quiet, wiggle and demonstrate the
need to change position, suddenly lie or stand very still, go to the corner
and squat, change facial expression, or say that she is wet. The parent
needs to pay attention to these behavioral changes and be ready to inter-
pret these gestures to mean that the child needs to eliminate. Only when all
these signals and good intentions come together can toilet training begin in
earnest.
establishing a pattern
One thing that will help establish a pattern of elimination is keeping reg-
ular mealtimes. In this way, the stomach, bowels, and bladder will be empty
and full at regular intervals. Not only that, but food tends to stimulate the
bowel, and many people go to the bathroom after a meal, usually breakfast
or dinner. So you may be able to predict your child’s bowel habits based
upon mealtimes. After you’ve determined the normal pattern of elimina-
tion, you’ll know when to place your child on the toilet in order to achieve
the best success.
getting started
Choose a time when your child is rested and in a good mood to begin.
You’ll need a child’s-size potty chair or potty seat.
When your child has indicated (by one of the above gestures, or some-
thing similar) that she needs to urinate or have a bowel movement, take her
to the bathroom and explain in simple language what is to be done. Use very
speciWc common words to describe the act of elimination. Place the child on
the seat and stay with her until the training session is completed. After about
Wve minutes on the toilet, the child should be wiped and rewarded with hugs
and praise for the desired behaviors.
If the child was not successful in achieving the desired behavior, praise her
for cooperating and sitting quietly on the toilet or potty chair. During train-
ing, the child should sit on the seat without toys or playthings, since these
would divert attention from what she is supposed to be doing.
Repeat this process until the child is able to tell you in advance that she
needs to go, or is able to use the bathroom or potty on her own.
bowel training
If your child is mentally retarded, it may be helpful to institute a bowel
training program. This, too, involves establishing a regular pattern of meal-
times to help establish a regular pattern of elimination, but the diVerence is
that routinely, about 15 to 30 minutes after one meal is Wnished, the child is
placed on the toilet for 15 to 30 minutes. Choose either breakfast or dinner
and stick with it, since the point of a bowel training program is to train the
child to produce a bowel movement at the same time every day or every
other day.
Make sure that the child is comfortable, with feet Xat on the Xoor or sup-
ported by a stool. Use simple descriptive common words to describe the de-
sired activity. Again, be positive by praising the desired results, and praise the
child for sitting on the toilet as you wished, even if there is no bowel move-
ment. Be sure there are no distractions during this time.
Many children with CP have chronic constipation, which can interfere
with bowel training. If your child does not have a bowel movement at least
every other day, your child is probably constipated. The treatment of con-
stipation is described in Chapter 3.
adaptive toileting
Special handling techniques are used for toileting the child with cerebral
palsy who is physically challenged. To protect the child (as well as themselves)
from injury, care providers need to learn these techniques. Ask a physical or
an occupational therapist for tips in handling your speciWc child.
It may be necessary for a child with CP to use adaptive seating to be prop-
erly positioned on the toilet seat. Children with CP need Wrm support, with
handrails and feet Xat on the Xoor or a hard surface. Proper body mechanics
while lifting a child to the toilet seat are necessary to decrease stress on the
caregiver’s back (see page 300). Further information on adaptive seating is
usually available through your child’s occupational therapist.
Giving an Enema
You may have to give your child an enema, either occasionally or on a reg-
ular basis. Enemas work by distending the rectum and making the child feel
the need to have a bowel movement; in addition, they clean out stool that
has been held in the rectum. You can buy Fleet or Pediatric Fleet enemas at
the drugstore, or you can use tap water in an enema bag. Check with your
doctor about what’s best for your child. Use about 1 ounce of water for every
20 pounds of the child’s weight. Unless recommended by your doctor, do
giving rectal medications or suppositories ♦ 347
not use more than 4 1⁄2 ounces of water. Before you give an enema to your
child, be sure to explain what you will be doing, and what will happen.
how to give an enema to a child

1. The enema should be warm—close to body temperature, not hot or
cold.
2. Position the child in one of three ways: sitting on the toilet or potty
chair; lying on a rug on the bathroom Xoor, face down with hips and knees
bent toward the chest; or positioned on the rug on the left side, with the left
leg straight and the right leg bent at the hip and knee and placed on top of
the left leg.
3. For a disposable enema: Remove the protective cap from the enema
bottle. Gently insert the tip about one inch into the rectum. Slowly squeeze
the enema container until it is nearly empty. (A small amount of the contents
of the container will remain after squeezing.) Remove the tip from the rec-
tum. For an enema bag: Put Vaseline jelly on the enema tip; gently insert the
tip about one inch into the rectum and slowly squeeze the water into the rec-
tum. Hold the bag about one foot above the child’s body.
4. Hold the child’s buttocks together, if necessary, to keep the water in-
side the rectum until the child tells you he or she needs to have a bowel
movement, usually after about three to Wve minutes.
5. Help the child to the toilet or potty chair, or place her over a bedpan
that has been placed in her bed. Or allow the enema to be expelled into a
diaper, if necessary.
6. Keep a record of the results.
Giving Rectal Medications or Suppositories

For a variety of reasons, some medications may need to be given by rec-
tum. When a child is vomiting and it’s important for her to have the med-
ication, the medication can make its way into the child’s system if it is ad-
ministered rectally. Medications are also given rectally to children who have
diYculty swallowing, who are unable to swallow, or who are actively seiz-
ing. Finally, a child who will be having surgery within a day often must re-
frain from having anything by mouth. Some necessary medications can nev-
ertheless be administered by rectum.
The medications most commonly given by rectum are antiseizure med-
ications, sedatives, antipyretics (medications that help control temperature),
antiemetics (medications that help control nausea), and bowel-stimulating
suppositories, usually composed of glycerin. Rectal medications are prima-
rily supplied in suppository form (suppositories are shaped like bullets, with
one rounded end and one Xat end). You can lubricate a suppository for
easier insertion by dipping it in water or in a water-soluble lubricant. Do
not use an oil-based lubrication, since it may interfere with medication

absorption.
how to give medication in suppository form

to a child
1. Before getting started, ask the child to try to move his bowels, since
if there is stool in the rectum, this may interfere with absorption of the
medication.
2. To get started, position the child either on his left side, with hips and
knees Xexed, or on his abdomen with knees Xexed and positioned toward
the chest. Older children prefer to lie on their sides, whereas insertion is eas-
ier in infants if they are placed on their abdomen.
3. Put a non-latex glove on the hand you will be using. With a gloved
Wnger, insert the medication beyond the sphincter. Use the pinky Wnger to in-
sert the suppository in infants and toddlers. In older children, use the index
Wnger. The usual distance for the insertion of rectal medications is as follows:
• in infants and young toddlers, about 1 to 1 1⁄2 inches
• in older toddlers and preschoolers, about 2 to 3 inches
• in school age or adolescents, about 3 to 4 inches.
4. For the medication to be eVective, it must be held in the rectum for 10
minutes. To prevent early expulsion of the medication—before it has been
fully absorbed—it may be necessary to hold the buttocks together for 5 to 10
minutes. Older children are generally able to control their sphincter better
than younger children. A suppository that has been administered to stimu-
late a bowel movement ought to be held for 5 minutes, or until the child
states a need to move his bowels.
h o w t o g i v e l i q u i d m e d i c a t i o n s r e ct a l ly t o
a child
The goal of the procedure is to deliver by rectum an appropriate amount
of medication via a catheter. We recommend using a size 15 French (Mentor)
catheter for this procedure.
The following equipment may be needed:
• size 15 French (Mentor) intermittent catheter
• the prescribed medication
• a syringe to deliver the volume of medicine ordered
• tap water
• a water-soluble lubricant
• a protective pad
1. Remove the syringe from the package and attach a needle to it.
2. Draw the medication from the bottle into the syringe, taking up a little
more than the prescribed amount.
suctioning techniques ♦ 349
3. Flick the syringe with your Wnger to get rid of air bubbles, and mea-
sure the amount of medication in the syringe again.
4. Remove the needle from the syringe and place the needle in a safe con-
tainer for disposal. (Do not attempt to recap the needle because of the dan-
ger of sticking yourself with the needle.)
5. Draw up into the same syringe an amount of air equal to the amount
of medication. The air will move to the top of the syringe when the syringe
is held upright. When the medication is administered, the air will follow the
medication into the rectum and will assist in clearing the syringe and deliv-
ering the ordered amount of the medication.
6. Lubricate the catheter tip in water-soluble lubricant and attach the
catheter to the end of the syringe.
7. Position the child on his or her left side. Insert the catheter into the rec-
tum. For a child weighing 22 pounds (10 kg) or less, insert it 1 1⁄4 inch; for a
child between 22 pounds and 44 pounds (10–20 kg), insert it 1 1⁄2 inches; for
a child weighing more than 44 pounds (20 kg), insert the catheter 2 3⁄4 inches.
8. Hold the syringe upright so that the air bubbles rise inside the syringe
and are delivered last. Push the medication into the tubing and follow it with
the air in the same syringe.
9. Remove the catheter and hold the buttocks together for 3 to 5 minutes
to allow the medication to be absorbed.
Suctioning Techniques
Note: You must be trained in suctioning techniques by your health care profes-
sional or a home health professional before you try the procedure on your own.
Some children need help in clearing their airway of mucus. Suctioning
will help clear the airway, but this procedure should only be performed when
the child needs it. Suction your child under the following circumstances:
(1) when you hear your child make wet breathing sounds, as if air is being
pushed through wet mucus; (2) when your child is having diYculty breath-
ing and is restless; or (3) when your child’s color is paler than usual and the
nostrils are Xaring out. The child will probably gag or cough when you use
a suction catheter.
The following description of the procedure for suctioning is provided
only as a memory refresher for caregivers who have already been trained
to do the procedure by a doctor or another health care professional. If you
do not feel comfortable performing the procedure, you should not attempt
to do it alone. Do not attempt to suction your child if you have not been trained
to do so.
You will need the following equipment for the procedure:
• suction machine and tubing
• cool salt water
• containers for rinsing the tubing
You can make up the cool salt water, or saline, solution by mixing 3⁄4 tea-
spoon of table salt with 2 cups water. Boil this mixture, and then cool it. Af-
ter it has cooled, place it in the refrigerator in a clean glass jar. Manufactured
saline solution can also be obtained by a prescription from your doctor.
how to suction a child

1. Gather necessary equipment and make sure the suction machine is
working properly.
2. Wash hands thoroughly.
3. Connect suction tubing to suction machine tubing.
4. Measure the tube from the tip of the earlobe to the tip of the nose.
Keep your Wngers on this mark. This is how far the tube will need to be in-
serted.
5. Insert the tip of the tube into the saline to wet the tube. Place the
thumb over the tube opening to check on the eVectiveness of the suction.
6. Tell the child what you will be doing and what to expect, and try to en-
list his help.
7. Insert the tube into the nostril to the appropriate length, with no suc-
tion. Keep your Wnger oV the suction port opening in the tube.
8. With the tube in place, put your thumb over the suction port, and ro-
tate the tube as you slowly move it out of the nostril. This should take no
longer than 5 seconds.
9. Rinse the tube in saline. Let the child relax a moment.
10. Repeat steps 5–9 for the other nostril.
11. After suctioning the nostrils, you may suction the mouth. Remember
to rinse the tube in saline Wrst.
12. Insert the tube into either side of the inside of the mouth with no suc-
tion.
13. Once the tube is correctly placed in the mouth, place your thumb over
the suction port and rotate or twist the tube out of the mouth for no more
than 5 seconds.
14. Rinse the tubing by suctioning the saline through it until the tubing
is clear.
15. Repeat oral suctioning if necessary.
16. Dispose of unused saline.
To clean the tubing, follow these steps:
1. Rinse very well in tap water and then place in hot soapy water.
2. Rinse inside and outside with hot water.
3. Place on paper towels to dry. When dry, place in clean plastic bag un-
til needed for the next time.
3
Part Three
Cerebral Palsy
Encyclopedia
Achilles Tendon Lengthening ommended. Occasionally, tendon lengthenings are also
done for people who cannot stand or walk but who want
(TAL, tendon Achilles lengthening, Achilles
tendon contracture, equinus contracture) to keep their feet Xat on a wheelchair rest. In this case, the
procedure is done for cosmetic reasons and to enable the
The Achilles tendon is the muscle that is most commonly person to wear shoes.
contracted in children with cerebral palsy. Contracture of
The surger y. The Achilles tendon is located behind
this muscle prevents the foot from being Xexed up. For the
the ankle and is attached to the gastrocnemius and soleus
child who is able to stand, this contracture prevents him
muscles, which are located just above and behind the
from standing with his foot Xat—instead, he is on tiptoe.
knee. There are three diVerent techniques for surgical
He may try to place his foot Xat, but he will have to bend
lengthening of the Achilles tendon. Percutaneous tendon
his knee back to do this. The initial treatment for an Achilles
Achilles lengthening involves making a small stab wound
tendon contracture usually involves physical therapy com-
through the skin in two or three diVerent places, then
bined with brace use (AFO) during the day.
stretching the tendon. The goal is to nick the tendon in
Indications: Achilles tendon lengthening is indi- several places and have the tendon tear in such a way that
cated for children for whom the brace no longer keeps the it stretches itself out and heals back in place. The advantage
foot Xat or for teenagers trying to discontinue the use of of this procedure is that it involves very small incisions;
the brace. Also, if the muscle is too tight to allow the child however, it provides the least control over the amount of
to use an AFO, then Achilles tendon lengthening is rec- lengthening.
Calf muscles
Lengthened tendon
Toe down first

Tight Achilles tendon
Calcaneus bone Heel down first
354 ♦ agenesis of the corpus callosum
The second method, called Z-plasty lengthening, in- be very severe if the tendon is overlengthened. It is far pref-
volves making an open incision that exposes the tendon; a erable for the child to have a slightly tight Achilles tendon
Z-cut is then made in the tendon. The tendon ends slide so that the child tiptoes slightly than to have the tendon
apart and are sutured into place again. This procedure al- completely nonfunctional. Another risk from Achilles ten-
lows the most controlled lengthening of the whole tendon don lengthening is the need to have the lengthening re-
and muscle area. peated. The child between the ages of 3 and 5 has a 25 to
The third method is called Baker lengthening, gastroc re- 30 percent chance of having the lengthening repeated be-
cession, or myotendinous lengthening and involves identify- tween the ages of 9 and 12. Repeated lengthenings can be
ing where the gastrocnemius and soleus muscles come done three or four times, but it is seldom necessary to re-
together in the middle of the calf to form the Achilles ten- peat more than once.
don. The gastrocnemius muscle is loosened and slid prox-
imally over the soleus. The advantage of this procedure is
that it has the lowest risk of overlengthening; one disad- Agenesis of the Corpus Callosum
vantage is that sometimes it does not provide suYcient (Aicardi syndrome)
lengthening. This diYculty in obtaining suYcient length-
ening with the Baker method explains why the Z-plasty is The corpus callosum is the structure in the brain that joins
often the preferred procedure. together the two cerebral hemispheres and provides a
pathway from one side of the brain to the other. If a child
After-surger y care: After an Achilles tendon length- does not have this structure, he may have seizures and mild
ening the child wears a short cast (from the toes to the to moderate mental retardation, as well as impaired visual
knee). These casts typically have soles, which allows the and motor coordination. Sometimes children who don’t
child to stand and walk immediately after the Achilles ten- have the corpus callosum are also deWcient in cellular mi-
don lengthening has been done. Following removal of the gration and proliferation, which essentially means that the
cast in 4 to 6 weeks, the child returns to a stretching pro- brain wiring is not correct; this can be seen in a variety of
gram for maintenance. An AFO may also be used to main- chromosomal defects. Agenesis of the corpus callosum is
tain correction, especially for the growing child. A hinged an integral part of Aicardi syndrome, which appears to oc-
brace may also be used, allowing the child to raise the front cur only in females and is characterized by severe mental
of the foot, but not to lower the toes to walk on tiptoe. retardation, generalized seizures that begin early in life,
and speciWc abnormalities of the retina.
What to expect: The complications from Achilles
The absence of the corpus callosum is diagnosed with
tendon lengthening, especially in children who walk, may
an MRI scan or a CT scan of the brain. Some individuals
Corpus callosum Cerebral hemispheres Without corpus callosum

a i r s wa l l o w i n g / a m b ly o p i a ♦ 355
with this diagnosis are completely normal otherwise. How- that are normally produced in the lungs, and such pooled
ever, children with many other congenital deformities of secretions can lead to recurrent pneumonia or bronchitis.
the brain are at higher risk for having this deformity. When Traditionally, technique for removing mucus from the
it is seen by MRI or CT scan during an evaluation of a child lungs of a child who cannot cough eVectively has been a
for cerebral palsy, it suggests more underlying problems. technique called chest physical therapy. Typical treatments
This diagnosis by itself cannot be used to make a speciWc last 20 to 30 minutes and are usually required several times
prognosis of what will happen to the child, however. Be- a day. The caregiver or nurse administers percussion to the
cause of their brain abnormalities, these children often child’s chest wall, while having her lie in a variety of diVer-
have cerebral palsy. ent positions. Many children with CP have scoliosis and/
or contractures, making the proper position diYcult to
achieve.
Air Swallowing Another treatment that has been used to help mobilize
(aerophagia) secretions in the lungs is the ABI vest®. It consists of an in-
Xatable vest connected by hoses to an air-pulse generator.
Chronic air swallowing is predominantly a problem for The generator rapidly inXates and deXates the vest, thus
children with mental retardation. Its main characteristic compressing and releasing the chest wall. The resulting
is that it causes the abdomen to become distended. If the chest wall oscillation generates increased airXow through
child has had an operation to prevent gastrointestinal the airways, creating forces that are like a cough and mobi-
reXux, so that stomach contents cannot come back up to lizing secretions. It does not require any positioning or
the mouth, then she is not able to release the air pressure special breathing techniques.
that develops in her stomach by burping, which may cause
signiWcant abdominal distension and pain. If she has a gas-
trostomy tube, the air can be vented through the tube. If Amblyopia
she doesn’t, occasionally the pain becomes severe enough (lazy eye)
that a tube is required. Usually children who have not had
operative procedures to prevent vomiting or reXux are able Amblyopia is deWned as subnormal vision in one or both
to release the air themselves by burping. Aerophagia is eyes and is sometimes referred to as “lazy eye.” Amblyopia
usually made worse when the child is agitated or is not en- is frequently associated with strabismus (crossed eyes). Be-
gaged in an activity. Treatment is predominantly directed cause the brain sees double with strabismus, there is a ten-
toward keeping the child comfortable and occupied with dency to suppress or tune out the image of the deviating
toys or a similar activity. There are no other signiWcant side eye so that only one image is seen. If this persists untreated
eVects from chronic air swallowing. in a child, such suppression can result in amblyopia and
eventually lead to a signiWcant loss of visual function in
Air way Clearance

Respiratory complications are often a signiWcant problem
for children with CP. Respiratory infections are the most
common cause for repeated admissions to the hospital for
these children. One of the reasons for their susceptibility to
respiratory problems is that their normal airway clearance
is often compromised by their limited mobility and a weak
or ineVective cough. Children who have quadriplegic CP,
resulting in their inability to walk, spend most of their day
in a wheelchair. Thus, they do not have the opportunity to
exercise and breathe deeply, which is one of the main
mechanisms for clearing one’s airway. In addition, many
children with CP cannot clear their airway with an eVective
cough. They either may be unable to take in enough air to
have an eVective cough, or they have poor coordination
of the muscles of their throat, making their cough either
ineVective or nonexistent. Without the ability to cough
eVectively, these children are unable to clear the secretions
356 ♦ aacpdm / antiepileptic drugs
that eye. The key to successful treatment is early detection plemented with iron and foods like meats and spinach
and intervention. have a high iron content, and are excellent nutritional sup-
With an infant, amblyopia can be reversed in a matter plements. Anemia in children with CP is also most com-
of weeks, whereas with an older child in whom it has ex- monly a result of iron deWciency due to a diet lacking suY-
isted for a longer period of time, months or even years of cient iron.
treatment may be necessary. Treatment may include (1)
providing the clearest possible image to the eye by correct-
ing any refractive error with glasses, or removing a cataract; Anterior Midline Defects
or (2) stimulation or forced use of the amblyopic eye by (holoprosencephaly, septo-optic dysplasia)
patching the better-functioning eye. Patching forces the
child to use the amblyopic eye and may result in a restora- There are a number of malformations that Wt into this cat-
tion of near normal vision. egory. The most common is holoprosencephaly, which in-
volves failure of the midline facial structure and the brain
behind it to develop. In the deWcit’s most complete ex-
American Academy of Cerebral pression, the brain has a single large ventricular cavity,
Palsy and Developmental with the inferior frontal and temporal regions of the brain
often absent and the remainder quite rudimentary. The
Medicine brain stem and cerebellum are present and fully developed.
(AACPDM) Septo-optic dysplasia is a form of holoprosencephaly
that includes a lack of development of the optic nerves re-
This organization was formed in 1947 by professionals sulting in severe visual impairment or blindness. It also re-
from many diVerent subspecialties of medicine with the sults in deWciencies of certain hormones produced by the
goal of fostering the total care of children with cerebral brain. This can cause very short stature, frequent urina-
palsy. Its membership currently includes medical special- tion, and other abnormalities. Any of these brain malfor-
ists and therapists from all disciplines caring for children mations can be accompanied by cerebral palsy.
with cerebral palsy and associated conditions. There are
annual meetings at which professional papers are pre-
sented. Most physicians interested and involved in the Single large midline cavity
care of patients with cerebral palsy become members of
the Academy, which currently has members worldwide.
Membership is gained by expressing an interest in cerebral
palsy and being recommended by a current member of the
Academy.
Anemia
Anemia is a deWciency of red blood cells in the blood sys-
tem. Red blood cells carry oxygen and are important to hu-
man physical and mental development. If anemia is severe
a child may appear pale, but mild anemia can easily be
missed because there are no physical symptoms. Anemia
can be caused by many diVerent conditions, the most com-
mon being insuYcient iron intake. InsuYcient iron is seen
most often with children, who get a limited amount of
iron in the foods they eat. Lack of other vitamins such as
B12 and folic acid can also cause anemia, but these are less
common in childhood. Children fed cow’s milk during
the Wrst year of life may become anemic because of an al- Antiepileptic Drugs
lergic reaction to the milk, causing microscopic blood (AEDs)
loss through the intestinal system and into the stool. It is
for this reason that either breast milk or infant formula is Antiepileptic drugs (AEDs) are medications used to try
recommended for the Wrst year of life. Infant cereals sup- and control seizures. AEDs raise the seizure threshold in
arteriovenous malformation / asthma ♦ 357
the brain. This process then decreases the electrical im- times be surgically removed. If not, treatment is directed at
pulses in the brain to prevent a seizure or the spread of a the symptoms caused by bleeding into the brain, such as
seizure. The primary goal of therapy is to control seizures seizures or motor dysfunction. Often a hemiplegic type of
with no side eVects from the AEDs. If this goal is unat- pattern occurs because the bleeding occurs predominantly
tainable, then the secondary goal is to decrease the number on one side of the brain, but there is signiWcant variation
of seizures and/or the duration of seizures, prevent fre- depending on the location and severity of the brain dam-
quent repeated seizures, and/or decrease the side eVects of age caused by the bleeding.
the AEDs. A health care provider who is knowledgeable in
seizure treatment must be involved in the management of
those with epilepsy/seizures. Arthrogr yposis
Arthrogryposis is a congenital condition in which a child’s
Arteriovenous Malformation muscles and joints are stiV, often causing aVected limbs to
be held in extended positions. This condition may aVect
(AV malformation, AVM) one, two, or all of the limbs, and varies in degree from be-
ing relatively mild to being so severe that a person is unable
Arteriovenous malformation is the malformation of arter-
to walk or to use his arms for functional purposes. There
ies and veins in the brain. During fetal development, the
are four basic causes of arthrogryposis: Muscle atrophy,
arteries and the veins, which should develop independ-
lack of suYcient room in the uterus during pregnancy,
ently, may form abnormal connections. These abnormal
malformation of the brain or spinal cord, and abnormali-
connections most commonly form in parts of the brain,
ties of tendons, bones, or joint linings.
and because the abnormal vessels have very thin walls, they
Children with arthrogryposis are not spastic, although
may rupture. Children born with AV malformation may
their condition can be mistaken for cerebral palsy. They
be completely normal throughout their whole lifetime
have normal mental development, and their surgical treat-
or they may develop sudden bleeding, causing a stroke,
ment is very diVerent from that of children with cerebral
which can result in cerebral palsy. The presence of this mal-
palsy. Although the surgical treatment is diVerent, other
formation in and of itself does not usually cause any prob-
aspects of treatment and care are very similar. Aggressive
lems—it is the bleeding from ruptures of the vessels which
physical therapy is the ideal treatment to maintain the
may lead to headaches, occasionally seizures, or in the case
joints in the best functional position and maintain the lim-
of an acute large bleed, sudden death.
ited amount of motion that is often present.
The cause of AV malformation is unknown. Depend-
ing on where the AV malformation is located, it can some-
Asthma
Malformed artery (reactive airway disease, wheezy bronchitis)
Asthma is deWned as recurrent and reversible broncho-

spasm, meaning that the airways of the lungs go into spasm
and narrow, obstructing air Xow. This narrowing results
from contraction of the muscles around these little air-
ways, as well as from increased production of mucus and
swelling because of inXammation. Both large and small
airways can be involved and are responsive to a variety of
stimuli, including pollens to which the patient is allergic,
dander from cats or dogs, cold air, or noxious environ-
mental agents such as tobacco smoke, aerosols, chemicals,
or strong aromas. Some children develop symptoms when
they exercise, or when they laugh or cry. Overall, it is esti-
mated that between 5 and 10 percent of children have asthma
at some time during their childhood.
Asthma accounts for 10 percent of emergency room
visits and 10 percent of medical hospitalizations in the
United States, and is the most frequent cause of school ab-
senteeism and chronic illness in children under age 18.
358 ♦ asymmetric tonic neck reflex / athetosis
Boys are aVected more than girls, by a 3:1 ratio. Though The presence of the asymmetric tonic neck reXex after age
many children who develop asthma early in life tend to im- 1 is a sign of signiWcant brain damage; if it persists past age
prove during mid-childhood and adolescence, a signiW- 2, it is evidence of poor long-term prognosis with respect
cant proportion continue to have symptoms into adult- to walking, a signiWcant Wnding in a child with cerebral
hood. There has been an increase in hospital admissions palsy.
and in deaths from asthma over the past years, for reasons
that are not clear.
Asthma does run in families, but it is not strictly a ge- Ataxia
netic disease. The fundamental abnormality seems to be a (balance)
hyperreactivity of the airways. A history of bronchiolitis
early in life is a risk factor for the development of asthma Ataxia means a lack of balance. Under conditions of nor-
later in childhood, as approximately one-third to one-half mal development, the body’s balance mechanism evolves
of the children who have asthma in adolescence had more from three separate systems: the eyes provide input to
than one episode of bronchiolitis early in life. determine the body’s position in space; the semicircular
The hallmark of asthma is recurrent wheezing, which is canals in the inner ear work like a gyroscope to tell the
reversible with the use of speciWc medications. Wheezing brain what position the head is in or how it is changing;
is a high-pitched sound heard when the child breathes the position sensors in the joints, particularly those in the
out. Some children have only occasional episodes of such neck, provide important information about where the
symptoms, which can vary from mild to severe, and may limbs are. A child with cerebral palsy has some limitation
require medication just on those infrequent occasions. in his balance capabilities, which is often expressed as an
Others may have recurrent episodes every few months, yet uncoordinated gait or diYculty standing in one place
be free of symptoms in between. Still others may have without moving. Ataxia continues to improve until the
chronic or daily symptoms that interfere with their lives, child is approximately 8 to 10 years old, at which time his
school attendance, and physical activity, with frequent vis- balance and coordination system reaches maximum im-
its to the emergency room and hospitalizations. Many of provement. Because ataxia involves the hands, it makes
these children require multiple medications every day. Wne motor control activities such as writing diYcult.
While wheezing is a hallmark of asthma, not every child One of the ways a child may compensate for ataxia is
who wheezes has asthma. There are many other causes of to walk very rapidly, because balance tends to be better
wheezing, including tracheomalacia (a soft, Xoppy trachea), when the child goes fast, just like riding a bicycle is easier
acute infections such as RSV bronchiolitis, cystic Wbrosis, at a faster speed. The child may also adopt a very wide-
bronchopulmonary dysplasia, or aspiration of a foreign based stance. Often it is easier for the child to stand with
body. Children with cerebral palsy may have chronic or re- some joints immobilized by ankle braces. There are many
current wheezing because they are aspirating their stom- children whose main reason for not walking independ-
ach contents, their food while eating, or even their own se- ently is severe ataxia. However, there is no surgery or med-
cretions and saliva. These items often get into their lungs ication to help this problem. The best way to improve
rather than into their stomach and cause recurrent respira- ataxia is by practicing movements similar to the methods
tory symptoms, such as bronchitis, pneumonia, or wheez- teachers use to teach children ballet or gymnastics. A phys-
ing. Treatment of the underlying abnormality (such as pre- ical therapist can structure balance activities and exercises
venting gastroesophageal reXux) may end the respiratory to maximize a child’s abilities, and these usually involve
symptoms. walking on a balance beam, learning falling, and working
on a therapy ball.
Asymmetric Tonic Neck ReXex

Athetosis
(ATNR) (see p. 438)
Athetosis is a movement disorder in which there are gross
ATNR is an infantile automatism, or a reXex of infancy, of- movements, often with fanning of the Wngers. Athetosis is
ten known as the fencer’s position. The reXex is triggered usually most prominent in the arms, where it causes slow,
by turning the head from side to side. As the head is turned irregular, writhing involuntary movements occurring at or
to one side, the arm and leg extend on that side. On the op- around the long axis of the limb, which become more in-
posite side, where the skull or the back of the head points, tense with attempted voluntary movement. It may also
the arm and leg Xex. This reXex is present in normal infants make speech diYcult. Athetosis does not cause contrac-
up to 6 months of age and should disappear after that age.
augmentative communication ♦ 359
tures to develop, although athetosis and spasticity are of-

ten both present in the same person and the spasticity may
cause contractures.
Care and treatment: Treatment for a child with

athetosis involves Wnding postural positions that allow her
to control the movements. Weighted vests or weighted
sleeves are the ideal treatment because they may help to
suppress the movements. If spasticity coexists, the spastic-
ity forms a natural dampener on the athetosis. For this rea-
son, suppressing spasticity in the presence of athetosis
must be done very cautiously, because it may bring out
athetosis, which is often worse in terms of function for the Simple communication device
child than the combination of athetosis and spasticity ini-
tially present. Generally, surgical muscle releases are very
unpredictable with athetosis, but operations that stiVen
joints, such as spinal fusions, work extremely well.
Most children with athetosis are initially very Xoppy
and often have very good cognitive function but poor up-
per body control. The gross movements are not present at
birth, but slowly develop after the Wrst year and increase in
severity by ages 6 to 8. With the child who has normal cog-
nitive function, communication problems, because of the
impact of athetosis on speech, are the most diYcult prob-
lems to overcome. Early use of augmentative communica-
tion devices should be encouraged if the child is not speak-
ing. Power wheelchairs are also recommended for the child
who is unable to walk by age 5, since the child who is un-
able to walk due to athetosis is seldom able to push a man-
ual wheelchair. Complex communication device
Augmentative Communication
Augmentative communication is a term used to describe
the technology that helps a person with a communication
disability to interact with her environment. The technol-
ogy used for augmentative communication is similar to
a prosthesis, which is used for a person who is missing a
limb; in that sense, this technology could be considered a
communication prosthesis. There are many diVerent levels
of augmentative communication: the best technology is
determined by the child’s age, cognitive level, and level
of disability, and by the environment in which she lives.
Augmentative communication techniques may involve
the use of sign language by one’s hands; sign language Augmentative communication device
by eye movement; symbol boards or picture boards; on wheelchair tray
or computer-generated speech devices, which may be ac-
cessed with keyboards or scanners. Assistive writing de- Indications: A child who is unable to speak or com-
vices such as computers with word-recognition software municate by 2 to 3 years of age should be evaluated by a
are also important aids in communication, especially in the speech therapist or an augmentative communication spe-
school environment. cialist with the goal of trying to establish the most appro-
360 ♦ autism / back knee gait
priate communication device. This initially means starting technology only works if both the child who is using the
with a symbol board if the child’s eyesight is good enough communication device and the person with whom she is
to allow him to point at pictures or other symbols to ex- trying to communicate understand the language. This
press his desires. Most children this age use head sign lan- means that parents or other caregivers are often required
guage (shaking or nodding the head, for example). Eye to be involved in the training and learning of this commu-
sign language can also often be used very eVectively for a nication system as well.
yes or no. Usually the child moves her eyes vertically to
Maintenance and care: Some of the augmentative
demonstrate a positive response and moves the eyes from
right to left to demonstrate a no response. communication technologies, such as eye or hand signing
As the child gets older and enters school, at 5 or 6 years and symbol boards, require only that the people with whom
of age, more sophisticated communication devices can be the child is communicating understand the language and
employed, such as computer-based speech synthesizers. know how to respond. The computer-based speech syn-
Again, this is dependent on the child’s cognitive ability as thesizers and more sophisticated access devices that involve
well as her ability to use the communication device. This scanning or head switches are technically sophisticated and
may require the combined eVorts of an occupational ther- prone to breakdown. A system for communication or a de-
apist, a speech therapist, an augmentative communication vice for accessing the system should not be purchased un-
specialist, and a wheelchair engineer. The child who is en- less there is a clear understanding of who is going to be
tering third or fourth grade and is being held up because of available to provide repairs and how those repairs are go-
a motor disability which makes writing slow should be as- ing to be provided.
sessed for augmentative writing devices. This is usually If an excellent communication system is purchased and
done with a laptop computer using shorthand typing in the child and family invest a signiWcant amount of energy
which one or two letters can be started with word recogni- in learning how to use it, but it is broken down and out for
tion so that words which are typed frequently are recog- repair 80 percent of the time, the system is not functioning
nized after the Wrst two keystrokes. This signiWcantly in- as a communication system. Most of the communication
creases the child’s typing speed and is much easier to read systems will only be able to be used eVectively if they are
than handwriting, which may be diYcult to read when the used regularly for the majority of the communication.
child is trying to write fast.
BeneWts and risks: The beneWts of the augmentative Autism

communication devices are in providing the child a mech- (autism spectrum disorder)
anism for interacting with her environment and the devel-
opment of self-conWdence. The ability to be involved in a Autism is part of the spectrum of disorders known as
meaningful educational experience requires the ability to autism spectrum disorder. By deWnition, autism means
communicate, and often the level of communication which that there is an impairment in the social interaction of the
can be established with a child with a signiWcant physical child with those around him, impairment in communica-
disability determines the level of the education which the tion skills, both verbal and nonverbal, and a restricted
child may achieve. This again is based on the assumption repertoire of activities and interests. Often the child with
that the child has normal cognitive capabilities. autism performs ritualistic repetitive behaviors. Children
One of the risks of augmentative communication is with autism are not necessarily mentally retarded.
attempting to provide and teach a child a sophisticated The cause of autism is unknown, and no medication
mechanism for communication which is above his or her has yet been found to be useful in treating this condition.
cognitive capability; the diYculty here is that even deter- There are children who both display autistic behavior dis-
mining a child’s cognitive ability often requires augmenta- orders and have cerebral palsy or motor problems, but
tive communication devices. Sometimes the only way to autism and cerebral palsy are separate problems even when
determine what is appropriate is by using equipment on they occur in the same child.
a trial-and-error basis. This is the only way to be certain of
the child’s ability or inability to use a speciWc piece of
Back Knee Gait
equipment.
Another risk with using sophisticated augmentative (knee hyperextension)
communication is that it requires the caregivers who are
A back knee gait, which means that the child’s knee bends
interacting with the child (usually the family) to be in-
back when she steps on her foot, is usually due to a tight
volved and to understand the communication device. This
behavior modification ♦ 361
lengthen because this may cause further instability in stand-

ing and more diYculty in walking.
A back-kneeing gait can result in a gradual stretching of
the knee structure. In young adults, severe back kneeing
often becomes uncomfortable and can signiWcantly limit
the amount of walking that can be done. In rare cases, with
children with signiWcant weakness, back kneeing is the
only stable gait pattern; following surgical lengthening of
the Achilles tendon, they may be unable to walk without
braces.
Behavior ModiWcation
Behavior modiWcation may best be seen as a series of
learning-based interventions aimed at developing wanted
behavior or decreasing unwanted behavior. Behavior
therapists typically evaluate a child’s behavior within the
Hyperextended knee context of where the behavior occurs. Therapists develop
a “functional analysis” of the behavior to determine how
the behavior “functions” in the environment. For ex-
ample, a child with cerebral palsy was screaming fre-
quently at home but not in the classroom. The therapist
made observations in the home and found that the child
typically screamed when mom was busy cooking dinner.
Mom would stop and reprimand the child and then re-
turn to her chores. The screaming would recur and mom
Achilles tendon and an overlengthened hamstring or weak would reproach the child again. Here, it appeared that the
hamstring muscles. Children with cerebral palsy and chil- absence of mom’s attention during cooking chores re-
dren with muscle weakness or severe hypotonia who do sulted in the child’s screaming, and mom may have been
not have good control of their knees often have a back knee inadvertently “rewarding” this behavior with her atten-
gait. The primary treatment of a back knee gait is to use an tion. Recommendations for increased attention to the
ankle-foot orthosis (AFO), which may be hinged to allow child when mom is cooking to “reward” positive behavior
for the ankle to be lifted, but blocked so the knee cannot and ignoring the screaming were then made to the child’s
bend backward without lifting the toes oV the ground. parents.
There is almost never a need to use a long leg brace for Typical strategies for increasing wanted behavior in-
this condition. There is no harm in children walking short clude the use of praise and attention and tangible rewards.
distances without their braces, if they wear their braces These positives tend to increase the frequency of the de-
the majority of the time. Another treatment for a back sired behavior when they are delivered following the be-
knee gait caused by very tight Achilles tendons is surgical havior. Typical strategies for decreasing unwanted behav-
lengthening of the Achilles tendon followed by the use of ior include the removal of positives, like “time out” (e.g.,
an AFO. removing the child from the work table for a minute for
hitting or spitting) or providing a negative consequence.
Indications: The indications for surgical treatment
Negative consequences like spanking generally should be
vary; generally, however, as long as the back kneeing can be
avoided because of such unintended consequences as fear,
controlled with an AFO, surgery is not indicated. If the
avoidance of the punisher or modeling the very behavior
Achilles tendon is tight and does not allow the ankle to
that therapists would like to see decreased. Ignoring is an-
come to neutral or to be held in an AFO so that both the
other strategy for decreasing behavior. When behavior is
front and the back of the foot touch the ground, surgery
not dangerous, ignoring can be a powerful way of helping
should be performed to lengthen the tendon. For an adult,
behavior to decrease. Sometimes, however, with ignoring,
an attempt should be made to discontinue the AFO by
behavior “gets worse before it gets better.”
lengthening the tendon. Care must be taken not to over-
362 ♦ biofeedback devices
Indications: Behavior management is clearly indi- to the child’s developmental level. Find a way of rewarding
cated to develop particular behavior like appropriate toi- parents and teachers for their good eVorts as well.
leting or social skills. The use of rewards to shape the de-
velopment of new skills is key to all learning. As well,
behavior management is indicated to increase behavior Biofeedback Devices
such as saying please or cleaning up after playing or to re- (auditory feedback, augmented feedback,
duce unwanted behaviors such as hitting or biting. When behavioral training helmet)
attempting to increase or decrease the target behavior in its
natural environment, the analysis of the child’s behavior Biofeedback devices operate under the theory that if a child
should Wnd what in the environment is maintaining the is given feedback about an unwanted position or behavior
behavior. When this is changed, it should help to change and then rewarded for changing it, the child will learn to
the behavior. Examples of common behaviors often main- use the more normal behavior. Biofeedback has been used
tained by the environment are biting, tantrums, or acting in an attempt to control drooling, to encourage head con-
out in class. trol, to improve sitting posture, and to decrease foot Xex-
ion at the ankle or toe walking. Most of these behavior
BeneWts and risks: Great beneWt can be realized modiWcation techniques use devices with electric switches.
through the use of organized, data-driven, reward-based For example, a helmet is Wtted with a level so when the
programs. Keeping data as to the incidence of the target child allows his head to drop, a switch activates and turns
behavior and how it changes with intervention allows the oV his television set. When the child holds his head up
parent or teacher to see if the program is working and to straight, the television set turns on again.
make changes if needed. The use of punishment-based Similar types of devices have been developed for many
programs, even behavioral programs that emphasize the other functions. For example, another biofeedback device
removal of positives, should be monitored closely to pre- is the small bib or cup held under the chin. When a child
vent “negative side eVects.” When behavior management is drools and wets the cloth, an electric switch is tripped and
applied to self-harm situations such as self-injurious be- the child’s television set is turned oV. Therefore, if he does
havior, it is important to work with an experienced thera- not control his drooling, he is unable to watch TV. In still
pist who is familiar with the use of behavior modiWcation another example, a small switch may be inserted in the heel
approaches for that behavioral issue. It is always important of an ankle brace and operated in such a way that if the
to reward small steps, progress toward a clear goal, and be child steps on her toe but does not step on her heel at the
Xexible about changing a program that is not eVective. same time, a loud noise will be generated. In this way a
child can be trained to walk with her foot Xat so as not to
Maintenance and care: When beginning a behavior
activate the negative reinforcing noise.
change program, it is important to have consistency of ap-
proach across environments (e.g., home and school). Re- Indications: At this time, there are no established
ward often, reward immediately directly after the behavior clinical indications for the use of these devices, although
occurs, and speciWcally (not “you were good”). As the be- many people continue to explore their use, especially in re-
havior changes, begin to reward intermittently to maintain search environments. They have been evaluated predomi-
the behavior change. Always adapt the behavioral program nantly for control of drooling, for head control, and for at-
tempts at improving gait.
Level built into

biofeedback helmet
ON
blood transfusion / bone densitometry ♦ 363
BeneWts and risks: The main beneWt of many of gical blood loss. Patients should take iron supplements
these devices such as the helmet or the drooling cup or the during the weeks before surgery.
ankle switch is that they can change behaviors in a speciWc The main purpose for autologous donation is to pre-
environment. The major risk is that the desired behavior vent the transmission of blood-related infections to the pa-
may not be carried over after the device is removed. This tient. However, the current blood supply is very safe from
may establish a false hope in parents and other caregivers the standpoint of infections caused by viruses like hepatitis
that a certain activity can be learned, when in fact the child and HIV. In fact, the most common causes of transfusion-
may never be able to make it automatic. In a sense, this sit- associated infections are bacteria. The risk of a transfusion-
uation is similar to that of the person who can sit erect with associated bacterial infection is the same for both autolo-
good posture but who slouches as soon as he relaxes and gous and allogeneic transfusions. So, if a patient is not
stops concentrating on maintaining the correct position. capable of donating his own blood for surgery, blood from
an alternative donor can be safely provided.
Maintenance and care: Most of the devices are
Despite signiWcant eVorts to maintain a very safe blood
electrical and therefore do require ongoing maintenance. supply in the United States, transfusion is not without
Some of this maintenance may be diYcult, such as of the risks. Minor complications of transfusion include fever,
drooling-control devices, which require wetting a cloth to nausea, or hives (allergic reaction). Rare complications in-
make an electrical connection. Since most of these devices clude: (1) transfusion of a diVerent blood type causing
are used in a research environment, the person Wtting the blood cells to break (hemolysis), (2) patient intolerance of
device is usually quite familiar with their maintenance. If the Xuid volume causing heart failure, (3) diYculty breath-
devices are purchased from a commercial vendor, it should ing, and (4) severe infection.
be clear who will provide the service and maintenance of Although blood transfusions can carry risks, when chil-
these devices in addition to the normal cleaning which the dren must undergo major surgery such as spinal fusion,
caregiver would provide. blood transfusion can be lifesaving. Under such circum-
stances, the beneWts of transfusion to patients far outweigh
Blood Transfusion the risks.
(autologous blood donation)

Bone Densitometr y
It is not unusual for children with cerebral palsy to require
corrective orthopedic surgery. Such operations, including (DEXA, DXA)
correction of scoliosis or hip abnormalities, may require The mineral (calcium) content of the bones can be mea-
support in the form of blood transfusions. Because these sured by using low-level x-ray (dual energy x-ray absorp-
are likely to be planned or elective operations, patients have tiometry or DEXA). Low bone mineral content increases
the option of donating their own blood. That is, in the the risk of the bone breaking (fracture).
weeks prior to surgery, patients can donate their own blood Bone densitometry is performed lying on a table, while
to be stored for use during their operation if the need the whole body or one part of it (leg, hip, spine) is scanned
arises. This type of donation is called a preoperative autol- with x-ray. The time needed for the study varies from one
ogous blood donation. Blood donated for use by those to ten minutes, depending on how much of the body is
other than oneself is called allogeneic blood donation. scanned. One must not move during this time. There is no
To qualify for preoperative autologous blood dona- pain involved, as nothing touches the patient.
tion, patients must be old enough to understand the pro-
cedure and cooperate fully. Hospitals and blood centers
that collect donations typically require the patient to be of
a certain weight to ensure a good quality sample. While
these criteria vary, a realistic weight standard is 65 pounds
or greater.
It is preferable to collect autologous blood during the
weeks before surgery. Blood collected more than 6 weeks
from surgery must be frozen. The last collection should oc-
cur no sooner than 72 hours before the scheduled surgery
to allow the patient time to replace their own blood. The
number of units donated depends on the anticipated sur-
364 ♦ botulinum toxin injections / brace, ankle
Indications: Children with CP are frequently found Another indication is dystonia, which is a movement
to have low bone density, especially when they are nonam- disorder often aVecting one or two muscle groups. Dysto-
bulatory and/or have diYculty with nutrition. Many have nia may cause very severe contractures of one muscle or
fractures (broken bones) after minimal trauma. A bone muscle group for a short period of time and then switch
densitometry study may be done if a child had one or more and cause the opposite deformity. For this reason, surgical
fractures, or if it is suspected that the child is at risk for low lengthening may be performed but is somewhat more un-
bone density based on his or her clinical condition. predictable. Using botulinum toxin avoids a high risk of
the opposite deformity occurring.
BeneWts and risks: The beneWt from knowing about
The newest use of botulinum toxin for children with
low bone density is that it can be treated with nutritional CP is as a treatment for drooling. A single injection of
supplements and/or medication. Treatment that raises botulinum toxin into the submandibular glands has been
bone mineral density may reduce the number of fractures eVective in reducing drooling, with the maximum eVect
or prevent fractures. The only risk of the test is from the from 2–8 weeks after the injection.
x-ray, which is not considered signiWcant, because the
amount of radiation from a DEXA study is less than the BeneWts and risks: The main beneWt of botulinum
standard chest x-ray. If the child needs sedation to hold still toxin injection is that it allows the physician time to ob-
for the study, then that adds the small risk associated with serve how much natural recovery is taking place.
sedation, and the child will need monitoring while sedated. The risks of botulinum toxin injections are very few.
The most frequent is temporary muscle weakness for up to
24–48 hours. Acetaminophen (Tylenol) can be given to re-
Botulinum Toxin Injections lieve any discomfort. Rarely, temporary excessive localized
(Botox®, Myobloc®) muscle weakness and temporary generalized weakness has
been reported. Allergic reaction is extremely uncommon.
Botulinum toxin is a drug that may be injected into the In addition, it is not uncommon for patients to eventually
muscle to weaken or temporarily partially paralyze very develop a tolerance to botulinum toxin requiring an in-
spastic muscles. There are two commercially available types, crease in dosage or making the drug ineVective. This is
Botox® (botulinum toxin A) and Myobloc® (botulinum occasionally due to true antibody formation against the
toxin B). The drug is injected through a very small needle drug.
and causes little pain. It does not cause scarring like alco-
hol and phenol injections, both now uncommonly used. Maintenance and care: After botulinum toxin in-
Botulinum toxin lasts four to six months and can be given jections, normal activity may be immediately resumed. If
multiple times. It can be given in up to four to six involved the injections are performed for contractures such as of the
muscles at a time with the total medication given limited hip or the ankle, it is important to continue splinting and
by the body weight of the patient. It does not seem to pre- stretching to maintain the correction for as long as pos-
vent, but may delay the development of contractures. sible. Usually these injections will need to be repeated in
four to eight months if the gain is to be maintained.
Indications: The main indication for botulinum
toxin is spasticity. Injections are most commonly given in
the hip adductor, hamstring, and gastrocnemius muscles. Brace, Ankle
In the upper extremity, the biceps, pronator, wrist and (ankle foot orthosis, AFO, MAFO, DAFO)
Wnger Xexors, and thumb adductor are also commonly in-
jected. The most common situation are circumstances in These braces are the most common type of brace used in
which the underlying spasticity is expected to improve sig- children with cerebral palsy. The brace extends from just
niWcantly or there is concern about the impact of perma- below the knee across the ankle and includes the foot. Al-
nent weakness. In a situation where a child is improving, though some physicians may still prescribe a leather shoe
such as after an acute head injury or near drowning, injec- attached to a metal upright, most up-to-date ankle foot
tion of botulinum toxin provides a six-month window to orthoses (AFOs) are made of a light-weight, high-density
see how much recovery and natural diminishing occurs in plastic and are custom molded (MAFO) to the patient’s
the spasticity. However, spasticity in the child with cere- foot and ankle. More recently, a wraparound style of ankle
bral palsy does not change signiWcantly, and it is almost foot orthosis with “tone reducing” features molded into
certain that six months after the injection the problem will the foot plate (DAFO, Cascade, Inc.) has been very popu-
return to the same degree as before. In these children, in- lar. Most braces Wt well inside of a sneaker or shoe although
jections are used primarily to delay surgery. a larger size is usually required to accommodate the brace.
brace, ankle ♦ 365
Sneakers with a removable inlay are helpful to accommo- dorsiXex forward out of the brace because there is no strap
date the AFO. below the knee holding the leg in the brace. Plantar Xexion
is blocked at ninety degrees. It is best used in the child who
Indications: The most common indication for this
can not tolerate a hinge due to rubbing or when maximum
type of brace is a child who toe walks or back knees due to control is required to correct a severe varus or valgus foot
a tight gastrocnemius muscle or Achilles tendon. The deformity.
muscle or tendon can not be so tight, however, that the 4. Ground reaction MAFO. The indication for this
foot can not be positioned into the brace without causing brace is the child with a severe crouch. The foot slides into
excess pressure. This means that an AFO cannot be used in the brace from behind. With each step the child takes,
a child who has a Wxed ankle deformity that is unable to be forces are generated up to the front of the lower leg just be-
ranged into a neutral ankle position. Varus or valgus foot low the knee to help push the knee into extension.
deformities may also require a MAFO if the foot can not 5. Leaf spring or plantar Xexion resist MAFO. This
be controlled with a shorter brace. Occasionally, the child brace is best used in the child without signiWcant contrac-
with a crouched gait may require a MAFO to keep the tures, who has mild toe walking due to spasticity of the
ankle from collapsing into a dorsiXexed position. gastrocnemius muscle. It resists plantar Xexion but will al-
There are many types of MAFOs, some of which are low for some push oV at the ankle. It also helps to spring
described here. the foot back up into dorsiXexion. This is especially useful
1. Solid ankle MAFO. This brace is Wxed at the ankle in the child with weak dorsiXexion due to tibialis anterior
and gives maximum ankle support. It is best for the young muscle weakness. These patients have a foot drop when
child who is just beginning to walk and requires ankle sta- their heel strikes the ground during walking.
bility for balance, or the severely involved child (quadri-
plegic) with poor ankle control or severe foot and ankle de- BeneWts and risks: The beneWts of using a MAFO
formity. There is typically a strap around the ankle and one are that it gives the ambulatory child a more stable base of
just below the knee. support to walk on by controlling the foot and ankle de-
2. Articulated MAFO. This brace has an ankle hinge formity while the brace is on. In the nonambulatory child,
and typically allows dorsiXexion but stops at ninety de- the brace can provide stability in a stander or gait trainer. It
grees to prevent toe walking. It is best for the child who is also helps to delay Wxed muscle contractures. The risks are
ambulatory and is able to voluntarily dorsiXex the ankle. It that with a more rigid deformity, the brace may cause pres-
should not be used in a child who crouches at the knee. sure sores. Also the more rigid the brace is as it crosses the
Due to the extra bulkiness of the hinge, it may be more ankle, the less exercise the gastrocnemius muscle gets.
diYcult to Wt into a shoe.
Maintenance and care: Most of these braces are
3. Plantar Xexion block MAFO. The indication is very
constructed of a high-density plastic. They will occasion-
similar to an articulated MAFO. However, movement
ally break if the brace is used to correct too rigid of a de-
does not occur at a hinge. Instead, it allows the ankle to
Solid ankle Articulated Ground reaction

Ankle brace (AFO)
366 ♦ brace, back
formity. In general, a growing child requires a new brace

approximately every twelve months. The development of
pressure areas may also occur during rapid growth spurts
and require adjustment of the brace. The brace should be
checked every six months for the need for adjustments.
The parent should check the child daily for pressure areas.
Brace, Back
(thoracolumbosacral orthosis [TLSO] spine brace,
body jacket, scoliosis brace, Boston brace,
Milwaukee brace, Wilmington brace)
Back braces are used to help straighten up a child who is

having trouble sitting up and, in some cases, to straighten
the spine, which may be developing a deformity or already
have one. The correct medical designation for these braces
is generally abbreviated as TLSO, which means a brace that
extends from the top of the chest down across the pelvis. If
there is an extension including the neck, the proper desig-
nation is CTLSO, which means that the cervical area is also
covered by the brace. These are very unusual and are rarely
prescribed for children with cerebral palsy. Spinal braces,
body jackets, or scoliosis braces are general and older terms
that are used, and there are many diVerent designs for
these braces.
The majority of current braces are made of molded
plastic and open in the front or back. Some have a separate
front and back that are held together with velcro straps. Indications: Although there is no consensus among
The speciWc design of these braces in diVerent geographi- physicians about the beneWts of back brace use for children
cal areas has led to names such as the Boston, Milwaukee, with cerebral palsy, there are two primary indications for
or Wilmington brace. The Boston brace is a factory-made ordering a brace. The Wrst is for a child who has diYculty
brace modiWed by orthotists. The standard oV-the-shelf controlling his body so that when he is sitting he collapses
plastic brace is not particularly useful for children with either sideways or forward. The brace may thus be ordered
cerebral palsy, since they are very diYcult to Wt. The Mil- for children for postural control. In this way it is used in
waukee brace is an older design that was used for bracing place of a custom-designed and tightly Wtted wheelchair
scoliosis. It is made with a plastic mold around the pelvis, insert, which provides the same function.
metal uprights and pads pushing against parts of the trunk, Using spinal braces for children with CP to maintain
and a circular extension around the neck. This is seldom postural control, provide better head control, and provide
used today and rarely has a place in the care of children better use of the arms is one option; using an adequately
with cerebral palsy. designed wheelchair is another. The beneWts of the brace
There are many local braces such as the Wilmington are a close Wt to the body and concealment under clothing.
brace, which are made with diVerent minor design changes Additionally, when the child is moved from one chair to
by a local orthotist. Most of these require a cast to be made another the brace goes along with the child. Clothes such
of the child’s body. The cast is Wlled to make a mold, over as winter coats can be placed over the top of the brace. The
which the brace is then made. Most of these custom- advantage of wheelchair supports is easy application to the
molded braces Wt much better and may be made out of very child. However, because a wheelchair is tightly Wtted with
soft plastic that further prevents skin irritation, or they regular clothes, it will not Wt when heavy winter coats are
may be made out of a more rigid, thinner plastic that can worn. Also, a modiWed wheelchair is only useful when the
be concealed under clothing. The process of molding and child is sitting in the chair.
brace construction generally requires at least a 24- to 36- The second use of a back brace, and in our view a mis-
hour time period. guided use, is to treat spinal deformities, such as scoliosis.
brace, foot ♦ 367
These braces were initially designed and used most exten- night in a child with cerebral palsy, because it will only in-
sively for children with idiopathic adolescent scoliosis, a crease pulmonary and abdominal constriction and will not
condition in which spinal curvatures develop in normal beneWt the child in any way, since lying in bed does not re-
preadolescent or adolescent girls. This type of scoliosis is quire any postural control.
entirely diVerent from the scoliosis that occurs in children If the brace is made of a low-temperature plastic, it
with cerebral palsy. There continues to be controversy con- must be carefully protected from direct sunlight and must
cerning how eVective these braces are in the control of sco- not be left in a car in hot weather, because the brace may
liosis in children with idiopathic scoliosis, but there is al- melt. It should not be cleaned with harsh detergents, since
most no controversy about their lack of eVectiveness in they may also damage the plastic. Usually a T-shirt or an
children with CP. Braces have no signiWcant eVect on pre- undergarment needs to be worn underneath the brace so
venting the development or progression of scoliosis in the plastic does not directly touch the child’s skin.
children with cerebral palsy. There is a general, but not uni-
versal, consensus that the use of any kind of spinal brace in
the treatment of scoliosis provides no impact on its even- Brace, Foot
tual outcome in the child with cerebral palsy. Likewise, (heel cup, UCB orthotic, arch support, SMO)
treating kyphosis is generally not felt to have any long-
term impact. Foot braces and special shoe inserts cover part of the foot
up to the ankle or slightly above the ankle. Foot braces,
BeneWts and risks: The primary beneWt of a well- heel cups, and arch supports make up a group of braces
Wtted brace is that it provides better postural and head con- that are smaller than the ankle-foot orthosis (AFO), which
trol, while at the same time being less cumbersome and extends from the toes to the top of the calf just below the
noticeable than a wheelchair. The primary risk is that a knee. These braces are at the highest just above the ankle-
brace that is not Wtted adequately causes skin irritation bone and are called supramalleolar orthoses (SMOs). They
with blisters and subsequent skin sores. The skin needs to vary greatly, including those that are custom molded from
be checked every day; whenever pressure areas are found, casts, and range from the ankle-foot orthosis to the simple
the brace should be modiWed. arch supports that may be sold over the counter (such as
Many of the children who need these braces for pos- Dr. Scholl’s arch supports).
tural control either have feeding problems or have diY-
culty coughing. The use of these restrictive braces further
restricts their lung function and may put them at higher
risk for developing repeated pneumonia because they are
unable to clear their lungs when they develop minor viral
infections. The chest wall in a growing child is Xexible, and
when braces are worn tightly they can deform the chest
wall, causing protruding ribs or Xattening of the chest.
Likewise, the application of a tight constricting abdominal
brace may increase nutritional problems, such as GE reXux,
Heel cups are manufactured by a number of companies
poor stomach emptying, or constipation. Generally, be-
as oV-the-shelf products. They are made of either hard or
cause of these complications, which are most likely to oc-
soft materials that cover the heel. They are meant to help
cur in children who need the postural support, the ade-
control the tilt of the heel and to keep it Xat inside a shoe.
quately Wtting wheelchair is a better option.
Generally, they are quite inexpensive and don’t provide
When a brace is needed for postural control, a brace
much support.
made of a soft foamlike material is more comfortable and
There are many diVerent kinds of arch supports. They
less likely to cause complications than the more rigid plas-
range from those made from casts, costing seven hundred
tic material.
or eight hundred dollars, to those that may be purchased
Maintenance and care: At the beginning, these oV the shelf for Wve to ten dollars. These are constructed of
braces should be used for short periods—at most, several leather, plastic, or metal.
hours during the day, while the child is closely monitored A special type of orthotic that has received a lot of pub-
for skin irritation. Areas of pressure underneath the brace licity is the UCB orthotic (the University of California at
may be toughened by being cleaned with alcohol after the Berkeley orthotic), a foot orthosis that is made from a cast.
braces are removed. There is no need to use the brace at A close mold of the heel is made, which is extended for-
368 ♦ brace, hip
ward to the base of the toes or under the toes. In some cir- discomfort—especially if the insert or brace is incorrectly
cumstances, this brace is brought up over the anklebone to Wtted. This is particularly true of tightly molded braces that
help provide further stability for the heel so it doesn’t twist. try to make a lot of correction in the Xat foot. Frequently
Because the UCB orthotic is very tightly molded, it is sup- the foot looks nice in the brace, but the child complains
posed to correct rotation of the heel and is usually used to that his feet hurt when he walks. Because of the uncertain
improve Xat feet. There are a number of theories that rec- beneWt of these braces, any brace that causes the child pain
ommend various pressure points to be molded into the or diminishes his ability to walk should promptly be re-
braces in an attempt to decrease spasticity. Although there moved or at least modiWed in an attempt to alleviate the
may be vocal local advocates of these special braces, there discomfort.
is very little scientiWc evidence that any one of these special There is never a good reason to use a brace or shoe in-
orthotics has a signiWcant advantage over any other. sert that rubs the foot, causing blisters or breakdown of the
skin. If these skin breakdowns are ignored, they may be-
Indications: The use of shoe inserts has no recog-
come infected, leading to long-term periods of “feet up”
nized standard of care or application. Frequently the
rest. Obviously the inability to walk is very detrimental to
speciWc practitioner and geographic area seem to favor a
a child’s continued progress in gaining mobility.
particular brace; the philosophy of a neighboring practi-
tioner or community may be entirely diVerent. Heel cups Maintenance and care: When new shoe inserts are
are usually utilized for people with painful heels in an at- obtained, they should be worn gradually, starting with one
tempt to stabilize the heel fat pad; they are often made of to two hours at a time. As they become more comfortable,
soft material to provide extra cushioning. as long as they are not causing any blisters, they may be
Some practitioners prescribe heel cups to improve Xat worn for longer periods of time, comparable to a normal
feet, but in general arch supports are utilized in an attempt day’s “shoe wear.” The care of the speciWc brace depends on
to correct Xat feet. They are frequently prescribed to help the material it is made of. Braces made of leather should be
with knee pain in runners. This is not relevant to the CP kept as dry as possible, and plastic braces, depending on
patient, and certainly no arch support will reduce knee the material, need to be protected from high temperatures.
pain in the child with cerebral palsy. The UCB type of or-
thotic, with its multiple variations, is the most common
foot orthosis prescribed to treat Xat feet in children with Brace, Hip
cerebral palsy, and is probably the second most popular (hip, knee, ankle, foot orthosis [HKAFO]; pelvic
brace after the full-length AFO, which provides much bet- band, hip brace, hip abduction brace, A-frame
ter support. brace, abduction pillow)
The speciWc indications for foot braces are very diverse,
and none of them have well-documented scientiWc sup- These braces are part of a whole family of braces that ex-
port. Certainly, in normal children the use of arch supports tend across the hip joint from the pelvis to the thigh, across
or any shoe inserts has been shown to make absolutely no the knee, and attach to a foot brace. The designation is hip,
diVerence in long-term outcome, since the foot tends to knee, ankle, foot orthosis (HKAFO) because it covers all
progress along whatever course the child’s genetic predis- of these areas. Some of the older terms include names such
position has determined. In children with cerebral palsy, at as long leg braces with a pelvic band or the pelvic control
this point it is not certain whether arch supports make any brace.
long-term diVerence, and there is currently no scientiWc The typical long leg with pelvic band brace is con-
evidence to suggest that they do. However, neither is there structed with metal uprights that are attached to shoes.
good evidence to suggest that they don’t make a diVer- There is a metal joint at the knee. The uprights extend
ence. The natural history of Xat feet varies in children with again to the thigh cuV and then cross the hip on the out-
cerebral palsy; for this reason, the main indication for shoe side, having a hinge at the area of the hip joint. This metal
orthotics ought to be those that make the patient’s feet feel upright bar is attached to a metal, leather-covered band,
more comfortable and improve the patient’s ability to which goes around the pelvis. This typical long leg brace
walk. If shoe inserts or braces detract from either of these with a pelvic band was used extensively during the polio era
daily necessities, then there is very little indication for con- of the 1920s–1950s, and there are still many older people
tinuing their use. who had polio and who continue to use these braces.
Other types of hip braces sometimes used for children
BeneWts and risks: The immediate beneWt is com- with cerebral palsy include twister cables, which are a type
fort to the wearer; similarly, the main problem is pain and of Xexible material (usually plastic or Xexible metal) that is
brace, hip ♦ 369
HKAFO with pelvic band Abduction brace
attached to a brace below the knee and then extends up leg braces with pelvic bands or the standard HKAFO are
above the knee and hip joints to help control rotation of used today for children with spinal cord dysfunction (such
the leg, primarily to prevent the toes from pointing in. as spina biWda, meningomyelocele, or spinal cord injuries).
There are also braces that are constructed to prevent the These children have normal upper body strength, motor
legs from crossing. Frequently these hip abductor braces coordination, and balance; when their lower legs are con-
do not extend below the knee; they may have hip hinges or trolled, they are then able to walk by using crutches.
may be rigid, simply holding the legs apart. The standard Children with this degree of cerebral palsy in their
brace has a metal band around the hip extended to metal lower extremities almost never have enough upper ex-
braces along the outside and thigh cuVs just above the tremity strength, muscle coordination, or balance to be
knee. able to proWt from this much bracing. It usually only weighs
Some braces are constructed to Wt on the inside of the the child down, making him look good while standing and
legs, where they push the knees apart. Often these have the taking a few steps but blocking him from functional walk-
appearance of A-frames. They may extend below the knee ing. These braces may also be used to control feet that turn
and usually do not have hinges at the knee. This type of A- in, and frequently a lighter version or a twister cable as de-
frame brace is usually constructed out of a soft material and scribed above may be prescribed for this purpose. Likewise
has the appearance of a pillow with velcro straps that hold these twister cable braces frequently make the child look
the knees against the side of the pillow. better standing but in no way improve his function. They
usually greatly diminish how far and fast he can walk, and
Indications: There are a number of indications for
may injure the knee joints. The use of these long braces is
the use of braces across the hip joints. One of the indica- seldom recommended for children with cerebral palsy.
tions is to improve a child’s ability to walk or to allow a Another indication for these braces is to prevent the
child to walk. For children with cerebral palsy, the use of adductor muscle from becoming tighter. These muscles
braces above the knee is seldom useful. Most of these long are in the inside of the thigh and make the legs cross over
370 ♦ brace, leg
each other. Because this process causes the hips to dislo- deformity: one hip abducts or becomes more “stuck away
cate, there has been some sense in the past that using braces from” the midline of the body while the other hip tends to
to keep the knees apart may help prevent this disloca- drift in toward the midline. This deformity tends to make
tion or keep the muscles from becoming tighter. Current sitting and standing very diYcult. Also, children who re-
guidelines, however, are not to use hip abduction bracing ally have tight muscles or who are becoming more con-
in any child with cerebral palsy unless muscle surgery has tracted are frequently very uncomfortable in these braces
been done to release the tight muscle Wrst. There is some and Wnd them almost impossible to sit in. Many of these
indication that bracing against very tight muscles only braces also are stuck in hip Xexion (legs drawn up) either
injures the hip joint further, which may cause abnormal because the hinge is Wxed in Xexion or because there is no
growth in the hip joint or cause it to dislocate more quickly hinge, which may contribute to the development of hip
than if no bracing were used. Xexion contracture.
There continues to be a great diVerence of opinion Occasionally, the very young child (less than 6 years
with respect to the use of braces following hip muscle sur- old) with low muscle tone (hypotonia) and a hip subluxa-
gery. There is some evidence that diligent use of night tion will beneWt from a hip abduction brace. The hip
braces to keep the hips apart may help the hips develop should be less than 50 percent subluxated and the brace
more normally or at least avoid dislocation. If this is done, worn at night time in an eVort to maintain hip stability un-
however, the opposite deformity may occur, in which the til the child’s acetabulum develops and hypotonia im-
hip may become stuck in the outward direction, which is proves. The child’s hips require close observation and may
even more disabling for sitting. The consensus seems to be require surgery at an older age.
that there is little indication for long-term rigid bracing for
Maintenance and care: The majority of hip braces
hips after muscle releases. The eYcacy of short-term brac-
are made out of metal and plastic. The plastic may be cleaned
ing is also debatable, although maintaining the child in a
by a gentle detergent, but it is important to keep it out of
good position during sleep and sitting is important and
high temperatures such as direct sunlight. Braces which are
hip braces are one means of achieving this goal.
made out of leather or have leather components should
Finally, the use of hip abduction braces, A-frame braces,
have the leather kept dry and have it cleaned with a leather
or abduction pillows to treat the problems of hip subluxa-
cleaning agent. Most of these braces have joints that
tion or tight adductor muscles after muscle surgery con-
should be lubricated with a small amount of lubricant such
tinues to vary greatly. It is a fairly well-established opinion
as WD-40 or the lubricant recommended by the orthotist.
among physicians treating patients with CP that bracing
As children are growing, these braces need to be adjusted
before muscle release surgery has no eYcacy and is prob-
and should be seen by a physician or an orthotist at least
ably more detrimental than eVective.
every six months to check on their Wt. Parents should be
BeneWts and risks: The beneWts and risks of the use checking the skin daily when the brace is removed for any
of abduction braces, pillows, and A-frames for the child red areas or skin breakdown. If skin breakdown is noted,
with spastic hip subluxation are uncertain at this point, one should check for wrinkles in the stockings underlying
and there is no agreed-upon community standard of prac- the brace; if the same area is persistently red, the brace
tice. Generally, the trend is that the risks and complications needs to be evaluated by the physician or orthotist.
in bracing outweigh their beneWts.
The primary complication of the use of bracing to im-
prove gait is that it diminishes the ability of the child to Brace, Leg
walk by decreasing speed and distance at the expense of (knee-ankle-foot orthosis [KAFO], long leg brace,
better cosmetic appearance. Any brace that is attached to a twister cable, circular wrap, knee brace)
pelvic band makes sitting more diYcult. It is also cumber-
some to constantly apply and remove these braces, and as A knee-ankle-foot orthosis (KAFO) is any brace that starts
a consequence it is not practical for a child to wear such a just below the hip and extends to the ankle, crossing the
brace constantly if she is sitting for long periods of time. knee joint. The braces have a number of variations. A very
Nor is it practical to apply the brace every time she wants common older brace has a metal hinge that often has a
to get up and walk. drop lock at the knee to prevent the knee from bending.
The complication of using hip abduction braces to im- When the patient wants to sit down, she can pull the drop
prove hip subluxation or treat tight muscles can be dislo- lock up, which allows the knee to bend. This device may be
cation of the hip if braces are used before muscle release called a drop lock, double upright, or long leg brace—
surgery. If an abduction brace is used after muscle release which is its older term. A twister cable is yet another brace:
surgery, it may create a deformity called the wind-blown it has cables attached to a short leg brace but extends above
bronchopulmonary dysplasia ♦ 371
should only be used for a period of a month to two months

at the most and should not become permanent means of
locking the knees.
BeneWts and risks: Although these long leg braces

have clear beneWts and indications for selected patients, as
mentioned above, invariably for children with CP the risks
created by the braces are far greater than any beneWts they
bring. The primary risk in using KAFOs for children with
cerebral palsy is typically a decreased functional ability to
walk instead of an improved function. These braces gener-
ally create an improved cosmetic appearance while the
child is standing, but at the expense of a greatly diminished
functional beneWt. Children who have a great deal of diY-
culty walking only short distances with walkers usually
cannot walk any farther when they are encumbered with
long leg braces. Additionally, they have diYculty sitting
because these long leg braces are usually rigid under the
thigh. If they are not properly Wtted, they may cause skin
irritation as well.
Using braces, such as twister cables or wraps, for rota-
tional control can also lead to the possible complication of
twisted stress through the knee joint, which may become
painful. Certainly, the joints are much more susceptible to
KAFO with drop-lock knee
overstretching than the bones, and a child usually com-
plains of pain when too much rotational stress is applied.
the knee and oftentimes above the hip. A circular wrap is a Maintenance and care: Some of these braces are
soft device that is wrapped around the leg and tied above constructed with a plastic AFO foot section, although some
the hip to control rotation about the hip. of them are attached to rigid orthopedic-type shoes at the
foot. In newer models, the metal uprights and metal hinges
Indications: These braces are rarely used for chil- at the knee have frequently been replaced with plastic up-
dren with cerebral palsy. Most children with CP who have rights and hinges, which are then attached to either leather
trouble controlling their knees also have much diYculty or plastic cuVs at the thigh. Care must be taken to ensure
with balance and motor coordination. The addition of that the braces continue to Wt a growing child—they
long braces may make these children look better standing should be checked every six months by the physician or
or walking, but in fact the braces make them walk more therapist. After the brace is removed, the skin needs to be
slowly because they have a great deal of diYculty handling checked daily for pressure areas or blisters. Hinges should
the extra weight of the braces. be kept dry.
The use of the metal knee hinge brace is primarily for
children with spinal cord dysfunction such as meningomye-
locele, spina biWda, or a spinal cord injury. These children Bronchopulmonar y Dysplasia
have excellent upper body strength and have no control or (BPD)
very little control of their legs. Using the brace to control
their legs often allows them to walk because of the rigid BPD is a chronic lung disease that is seen primarily in pre-
support, but they often have a decrease in their function mature babies who require ventilator support and oxy-
because of increased energy needed to handle the braces. gen therapy after they are born. (Many children who have
Additionally, there is no long-term beneWt. cerebral palsy were premature.) Occasionally a baby who
Another indication for a long leg brace, often a knee never required ventilation will develop chronic lung dis-
immobilizer, is temporarily after surgery. During the pe- ease as well. In general, the lower the birth weight and ges-
riod after surgery, patients often have diYculty developing tational age of an infant, the higher the incidence and
control of their muscles and, as a short-term strategy to severity of BPD, and in these infants hyaline membrane
help patients learn to control their muscles, the use of disease (respiratory distress syndrome) is almost always
these temporary braces may be beneWcial. These, however, present before they develop this condition. It is possible,
372 ♦ bronchoscopy
however, for term infants to develop a BPD-like illness or test is generally done under heavy sedation or under gen-
chronic lung disease after neonatal pneumonia, meconium eral anesthesia and can be performed on an outpatient
aspiration, or another severe illness in the neonatal period. basis.
The speciWc criteria for the diagnosis of BPD are sub-
Indications: Children who have diYculty breathing
ject to opinion and debate. However, BPD is considered in
and possibly have some anatomical obstruction in the tra-
an infant who was treated during the Wrst two weeks of life
chea or bronchi must have this area directly visualized with
with mechanical ventilation, continuous positive airway
the bronchoscope. Children who may have breathed in a
pressure (CPAP), or oxygen and who continues to have
foreign object that cannot be dislodged must also have a
respiratory diYculty at the age of 28 days after birth or at
bronchoscopy. Occasionally, a child may also develop Wxed
36 weeks postconceptional age. Respiratory diYculties in-
secretions and form a plug in one of the large airways in
clude at least the need for supplemental oxygen therapy
the lung, and the bronchoscope can be used to go into
(some infants with severe BPD may require even more res-
the plugged tube and remove the obstruction. Broncho-
piratory support) and symptoms such as increased work of
scopies are performed by physicians with special training
breathing. Chest x-rays will show characteristic changes in-
in this technique—they are pediatricians specializing in
cluding cystic changes in the lungs, and in some cases the
pulmonary diseases or are ear, nose, and throat (ENT)
lungs will generally appear cloudy instead of clear.
surgeons.
In some children with BPD the lungs develop areas of
Wbrosis or scarring; atelectasis, areas of the lung that do not
Wll with air; and small cysts, not unlike emphysema in an
older person. In other children with BPD, the lungs re-
main underdeveloped and lung growth is not normal, but
scarring and other changes are less prominent. In severe
cases of BPD, oxygenation and ventilation are more se-
verely impaired and increased pulmonary Xuid may be
present. Infants with BPD may be discharged home from
the nursery with oxygen, monitors, and other technologi-
cal supports. In infants with BPD, growth and nutrition is
extremely important to promote lung healing and the
growth of new lung tissue, which occurs most dramatically
during the Wrst two years of life.
As new lung tissue grows BPD symptoms improve.
However, infants and young children with BPD remain
susceptible to respiratory viral infections, particularly RSV
(Respiratory Syncytial Virus), and readmission to the hos-
pital for pneumonia, respiratory distress, or other prob-
lems during the Wrst two years of life is not uncommon. It
is important that the appropriate vaccinations and other
strategies to protect against infection be maintained. Other
challenges that may require medical intervention include
the development of asthma symptoms, including chronic
coughing and wheezing, and feeding diYculties, includ-
ing aspiration, oral aversion, gastroesophageal reXux, or
failure to thrive. BeneWts and risks: Bronchoscopy allows the direct
visualization of the airway; as a consequence, anatomical
Bronchoscopy problems such as obstructions or collapses of the airway
can be directly seen. Sometimes scar tissue has formed
Bronchoscopy is a procedure in which a physician places a from having an endotracheal tube in the trachea for long
Xexible or rigid telescope into the back of the throat and periods of time. Scar tissue can also be directly visualized
down the airway, allowing him or her to look into the air- through the bronchoscope. With rigid bronchoscopy, there
way and assess whether it is inXamed or Xoppy or has any is a small risk of dental injury. Rarely, swelling from ma-
other problems that are causing diYculty in breathing. The nipulating the airway can cause a crouplike picture. The
bruxism / bunions ♦ 373
major risk of this procedure is that it does require signiW- painful. The big toe may also become Xexed down and curl
cant sedation and is occasionally done under general anes- inside the foot.
thesia. The airway must be carefully maintained because In all of these deformities, as the toe gets stuck, arthri-
the child must continue to breathe during this whole pro- tis develops in the great toe joint. Not only can the arthri-
cedure. In general, when this procedure is performed by tis cause a signiWcant amount of pain, but the deformity
physicians who are trained in its use, the risks are very makes wearing shoes problematic. These deformities also
small. occur in patients without cerebral palsy, but it is important
Care after the bronchoscopy usually centers on the to note that the treatment diVers signiWcantly when no
child’s recovery from the anesthesia or sedation. If there is spasticity is present. Treatment in patients without CP of-
a risk of postoperative airway swelling, there may be the ten involves attempts at rebalancing muscles and correct-
use of steroids and close monitoring to make sure that ing the alignment of the toe, but this approach almost al-
breathing continues without diYculty. The procedure may ways fails in the patient with spasticity. The natural history
be repeated, especially if it was performed for removal of of these deformities for people with spastic feet is that
obstructions such as thick secretions. they gradually get worse and continue to become more
problematic.
Bruxism
(teeth grinding)
Grinding or clenching the teeth while not eating is called

bruxism. This is a common problem for some children
with cerebral palsy but also occurs, usually at night, in
some children who are otherwise normal. Clenching and
grinding can cause greater pressure on the teeth than oc-
curs when the child is chewing. The increased force can
cause the teeth to wear down prematurely or to become
malaligned. Causes of the behavior may be ulcers in the
mouth, hypersensitive gums or teeth, or it may be a Bunion
learned behavior. The treatment involves identifying the
cause and trying to eliminate the problem. If there is a sore
or hypersensitivity, this should be treated. If the problem
occurs at night, using diazepam (Valium) may help bring
muscle relaxation. The most common method of treat- Indications: The child should be treated if there is
ment is to make a mouth insert that will stop the grinding. pain with shoe wear or with activity. Initially, some modi-
This treatment is usually performed by a pediatric dentist Wcation of the shoe, if the primary problem is irritation
experienced in dealing with children with disabilities. from the shoe, may be attempted. If this is not successful,
a surgical correction is indicated. The surgical correction
that is performed for almost all of these types of deformi-
Bunions ties is a fusion of the joint between the great toe and the
(hallux valgus, cocked-up great toe, Xexed great metatarsal, called a great toe metatarsal phalangeal joint
toe, great toe arthritis) fusion. Often it is Wxed with one or two pins or screws af-
ter the joint cartilage is removed, which places the toe in a
A bunion is a prominence that develops on the inside of
good position. The correction lasts a lifetime and elimi-
the foot where the big toe joins the foot. Children with
nates pain.
spastic cerebral palsy often develop bunions, especially if
they have Xat feet and tend to walk on the inside of the BeneWts and risks: The beneWts are relief of pain and
foot. This bunion may become sore as it rubs against the the ability to wear shoes comfortably. The main complica-
side of the child’s shoe. It is usually associated with a toe tions of this surgery are the possibility that the bones will
that has slipped over or started bending toward the inside not fuse properly or diYculty with healing. Although non-
of the foot, often overlapping or underlapping the second fusion is rare, it requires a second procedure because pain
toe. This deformity is called hallux valgus. It may also be as- usually persists if the bones do not heal together. Follow-
sociated with a cocked-up great toe that becomes stiV and ing a fusion of this nature, the child is placed in a cast that
374 ♦ cpap; bipap®
covers the lower leg from his toes to just below the knee; mature infants), which often cause unacceptably reduced
the cast is worn for six to eight weeks. If a pin is used and blood oxygen levels. CPAP can be used to support the res-
is left sticking out of the joint, it is usually removed at the piratory muscles when work of breathing is increased and
time the cast is removed. No bracing or therapy is usually to keep the airway open in conditions such as tracheoma-
needed after this procedure. lacia, where the trachea has a tendency to collapse, or in
cases of upper airway obstruction. Conditions such as
these can be associated with unacceptable increases in the
CPAP; BiPAP ® carbon dioxide level or unacceptable levels of respiratory
(continuous positive airway pressure; bi-level distress due to labored breathing. Examples of more chronic
positive airway pressure) use of CPAP include obstructive sleep apnea, where posi-
tive pressure is applied to the airway during sleep to stent
Introduction: When a person breathes in, the respi- it open during sleep. In some very severe cases of tracheo-
ratory muscles create a negative (below atmospheric) pres- malacia, CPAP is applied via a tracheostomy tube to keep
sure in the chest cavity causing air to Xow into the lungs. the airway open. A Wnal example is in cases of muscle weak-
Exhaling (breathing out) is normally a passive process that ness, in which extra support is needed to assist the respira-
does not require any muscular force. tory muscles.
Although normal breathing depends on the develop- BiPAP®, bilevel positive airway pressure, is another
ment of negative pressure, occasionally it becomes neces- form of positive pressure respiratory support, which is
sary to apply positive pressure to the respiratory system only approved by the Food and Drug Administration for
(the airways and lungs) to assist breathing. For example, noninvasive use. It involves the application of a constant
this can be needed during surgery, acute illnesses in which level of airway pressure during exhalation (CPAP), but a
breathing becomes ineVective (respiratory failure), or if higher pressure during inspiration. Bilevel positive airway
the airway is obstructed as occurs in obstructive sleep ap- pressure support provides a boost of pressure to either as-
nea. Positive pressure can be applied to the respiratory sys- sist the respiratory muscles or to push the airway open dur-
tem via a tightly Wtting face mask in what is called nonin- ing inspiration. During exhalation, continuous positive
vasive ventilation, or via a breathing tube in the airway airway pressure at a lower level is applied to help keep the
(either an endotracheal tube or tracheostomy tube) in lungs or airway open. BiPAP® is applied with a mask that
what is called invasive ventilation. Wts over the nose or occasionally both the nose and mouth,
Positive pressure support is a form of respiratory assis- and is sometimes referred to as noninvasive ventilation or
tance used when the pressure of air entering a person’s nasal mask ventilation.
lungs needs to be higher than normal atmospheric pres- The acute indications for BiPAP® are generally similar
sure. The main reasons for using positive pressure respira- to those for CPAP, although since it is an increased level of
tory support are unacceptably low levels of blood oxygen, support, patients who require BiPAP® may be sicker than
unacceptably high levels of blood carbon dioxide, or unac- those who need only CPAP. Bilevel positive airway pres-
ceptably high levels of respiratory distress. With positive sure is not used in newborns. Patients who are recovering
pressure respiratory support, air is pushed into the lungs from surgery or other severe illnesses, and who needed in-
by a machine, rather than, or in addition to being pulled in vasive mechanical ventilation with a breathing tube may be
by the respiratory muscles. There are a variety of strategies placed on BiPAP® for a short time as well. The most com-
to facilitate this process, but two are described here: CPAP mon chronic uses of BiPAP® are obstructive sleep apnea
and BiPAP®. and muscle weakness requiring more support than CPAP
DeWnitions and indications: CPAP, continuous can provide.
positive airway pressure, can be administered either inva- BeneWts and risks: Positive pressure ventilatory
sively or noninvasively. When CPAP is applied invasively support, either invasive or noninvasive, is a serious therapy
it is also called PEEP (positive end-expiratory pressure). that is used to address signiWcant abnormalities with air-
CPAP is used to provide positive pressure at a constant way or respiratory muscle function and gas exchange. The
level throughout the respiratory cycle, in both inspiration risks of leaving these sorts of problems untreated are al-
and exhalation. It is used acutely to support breathing for most always greater than the therapy. Positive pressure
several reasons, one of which is helping to keep the alveoli ventilation allows for greatly improved oxygen absorption
(the very small air sacs in the lungs) open. The alveoli have and carbon dioxide elimination by the lungs and provides
a tendency to collapse during illnesses such as severe pneu- needed support to the airway or respiratory muscles with-
monia and Respiratory Distress Syndrome (seen in pre- out having to use a breathing tube and invasive ventila-
carpal tunnel syndrome / cerebellum ♦ 375
tion. The major acute risk of all positive pressure ventila- they may become inXamed and cause tightness, thereby
tion is the development of a pneumothorax, a condition in constricting the nerve and causing numbness, usually in
which air escapes from the lung into the chest cavity caus- the thumb, index Wnger, and long Wnger. The feeling is of-
ing the lung to collapse. This complication is extremely ten worse at night when the Wngers are not moving. It may
rare with noninvasive ventilation and even with CPAP ap- be a dull ache, or a sensation of needles or pins in the
plied via a tracheostomy tube. Pneumothorax is easily Wngers. Sometimes the pain also shoots up toward the
identiWed with a chest x-ray and a tube can be inserted into elbow. With teenagers and young adults with cerebral
the chest cavity to drain the air if needed. palsy, carpal tunnel syndrome may occur from using the
Although mask ventilation is preferable to invasive hands for pushing manual wheelchairs or for patients who
ventilation for many reasons, both CPAP and BiPAP® can are heavily dependent on walkers or crutches for weight
be challenging therapies both in the short and long term. bearing.
Tight-Wtting masks are sometimes diYcult to tolerate and
Indications: The use of anti-inXammatory medica-
care needs to be taken to Wnd a mask that Wts correctly and
tions such as aspirin, ibuprofen, or other anti-arthritic
maximizes comfort and tolerance. The sensation of air be-
medicines is the Wrst line of treatment. Splints should be
ing forced into the nose and/or mouth can also be diYcult
worn at night to hold the wrist extended. If this interven-
to adjust to and various strategies may be necessary to en-
tion does not relieve the symptoms or if they return im-
hance acceptance. Nasal drying and irritation and sinusitis
mediately after discontinuing splinting, the tunnel in
are possible consequences of nasal mask ventilation, and
which the nerve runs can be surgically released with a pro-
excellent skin care is needed to minimize irritation or even
cedure called a carpal tunnel release. This is a simple out-
breakdown at the site where the mask is in contact with the
patient procedure that can be done on adults under local
skin. Each of these problems is treatable and in the vast ma-
anesthesia. It requires only a soft bandage for ten days.
jority of cases does not preclude the use of these useful and
However, individuals would be restricted from weight
potentially lifesaving therapies.
bearing with walkers and crutches, and from wheelchair
Maintenance, care and discharge planning: When use for three weeks.
used acutely the maintenance, care, and administration of
What to expect: Complications and risks of the
CPAP and BiPAP® are the primary responsibility of the
procedure are minimal and mostly relate to possible recur-
medical team. It is important for the family to attend to pa-
rence as the tunnel heals and tightens up again. The main
tient comfort and tolerability of the mask and to evaluate
instructions for preventing recurrence include ensuring
the underlying skin in an ongoing fashion. When used
proper hand use with wheelchair wheels, crutches, and
chronically the maintenance, care, and administration of
walkers.
CPAP and BiPAP® are the primary responsibility of the
family. Although this may seem overwhelming at Wrst,
with the appropriate training this can become routine and Cataracts
the care team should always provide supervision and med-
ical follow-up when needed. It may also be beneWcial for A cataract is present when the lens, which helps focus the
the patient to bring his own mask to the hospital when image on the back of the retina, is cloudy and limits the
testing or hospitalization is required. transmission of light through it. This condition has many
causes, including congenital infections and congenital
malformations. Cataracts are sometimes associated with
Carpal Tunnel Syndrome other malformations that may cause cerebral palsy. The
(Wnger numbness, hand pain) treatment involves surgery to remove the cataract and pos-
sibly to implant a new plastic lens. The earlier this proce-
Carpal tunnel syndrome is a common problem that occurs dure is done, the more likely it is that good visual function
most often in people who use their hands extensively in will develop.
repetitive tasks, such as knitting, typing, or using hand
tools. It does sometimes occur in younger individuals, es-
pecially in women during pregnancy. Cerebellum
The major nerve (median nerve) in the area travels to
The cerebellum is the upper back part of the brain. It con-
the hand through a very narrow area called the carpal tun-
sists of two hemispheres and is located in the posterior cra-
nel, located at the wrist. The area is occupied by this nerve
nial fossa portion of the brain. The cerebellum coordinates
and eleven tendons. If the tendons are used extensively,
the action of muscle groups and times their contractions,
376 ♦ cerebral palsy / child abuse
Cerebrum body, and vice versa. Injuries to one hemisphere cause dys-
function of one side of the body, called hemiplegia (motor
involvement of one arm and one leg on the same side of
the body). Injuries to both sides cause diplegia (motor in-
volvement of the lower extremities with diYculty in trunk
control and Wne motor skills) or quadriplegia (motor in-
volvement of all four limbs).
In each half, or hemisphere, there are speciWc areas that
control speciWc functions. SpeciWc areas such as the frontal
lobes predominantly control emotion; speech is con-
trolled primarily on the right side of the brain; and speciWc
areas of the brain control the hands as compared to the
feet. The diVerent areas of function have been mapped out
very well—largely by careful observation of known areas in
Cerebellum
which injury has occurred, followed by recording the deW-
cits that patients subsequently exhibit.
Injury to speciWc areas of the brain explain why some
children with cerebral palsy exhibit behavior diYculties or
have speciWc problems with their motor control. Children
with cerebral palsy may have full areas of the brain missing
(revealed when scans are performed), but because their
brain is still developing, the function ordinarily performed
so that movements are performed smoothly and accu- by that part of the brain may be taken up by a new part of
rately. Clumsy and disorganized motor skills caused by the brain. This is the major reason why the outcome in
damage to the cerebellum is called cerebellar ataxia. Sen- cerebral palsy diVers greatly from the outcome of head in-
sory information may also be integrated through the cere- juries occurring in adults.
bellum.
Child Abuse
Cerebral Palsy
(child neglect, shaken baby syndrome)
(static encephalopathy, Little disease)
Child abuse is deWned by Public Law 93-247 as physical or
Cerebral palsy is caused by malformation, scarring, or in- mental injury, sexual abuse or exploitation, negligent care,
jury to the immature brain that usually occurs before age 5 or maltreatment of a child under the age of 18 by a person
and that results in diYculty with muscle movement or who is responsible for the child’s welfare.
control. The brain damage that causes cerebral palsy does There is much about the abuse of children that is not
not change over a child’s life; however, as the child grows understood. We do know that child abuse has a tendency
and matures, the symptoms of the disability may become to be present in certain families, especially where parents
more apparent. themselves were abused as children. Children with disabil-
ities, especially severely involved children with cerebral
Cerebrum palsy, are at higher risk for child abuse than children with-
out disabilities. These children may be unusually irritable
The cerebrum is the major front and upper part of the or diYcult to comfort, which can become frustrating for
brain where active coordination and voluntary muscle parents and caregivers. Parents of children who are very
movement is controlled. This is also the part of the brain diYcult to care for may neglect or physically harm them as
where consciousness, thought, and psychological func- a way of dealing with their own frustration. Any stress can
tions reside and are organized (called the executive func- precipitate striking out, and parents of children with dis-
tion). This part of the brain is extremely vulnerable to in- abilities often experience a great deal of stress related to
jury and is the area in which scars occur that lead to cerebral their child’s care.
palsy. Parents of children with disabilities need to have some-
The cerebrum is divided into two halves, the right and one whom they can call for help. This may be a grand-
left hemispheres. The right side controls the left side of the parent, a friend, a neighbor, or a social worker. Parents
chromosomal disorders ♦ 377
should learn to call and admit that they are unable to When an entire chromosome is involved, there are also
handle the situation, especially when they have diYculty many genes involved. Thus, children with chromosomal
controlling their emotions and when their frustration level disorders often have typical facial features, or birth defects
is very high. such as congenital heart defects, in addition to develop-
Shaken baby syndrome occurs when a caregiver is try- mental delays or cerebral palsy. Most people recognize
ing to quiet a baby by shaking her back and forth. If this Down syndrome in which there is an extra chromosome
maneuver is done too roughly, it can cause bruises and number 21. People with Down syndrome share certain
contusions of the baby’s brain, which can cause long-term physical features such as a Xat proWle, upslanted eyes, hy-
brain scars and cerebral palsy. This too is a form of child perextensible joints, and varying degrees of mental retar-
abuse. dation. Heart defects and defects of the intestines are also
The complications from child abuse can be very severe, frequent.
from bruises and broken bones to neglect, such as not be- Another chromosome anomaly is the deletion of a small
ing given needed medication or adequate food, and can piece of a chromosome, whereby a small part of a chromo-
even lead to death. Very few parents actually intentionally some is lost (and thus a number of genes are missing), a
abuse their child, but it can become the only form of re- duplication in which a piece of a chromosome is present in
acting to the environment that the parent is capable of at 3 copies rather than in 2, or a translocation, whereby a
the time. small piece of a chromosome may be attached to another
By law, suspicions of child abuse must be reported by chromosome. These can be identiWed by preparing and ex-
school and medical personnel to the appropriate state amining the chromosomes under a microscope. Depend-
agency which investigates the situation. Responses may ing on the speciWc genes involved, these children may have
include support for the family, or in severe situations multiple physical and cognitive problems as well. Rarely,
(where the child’s safety or health is felt to be threatened) one healthy parent of an aVected child may have a rearrange-
removal of the child from the home on a temporary or ment of his or her chromosomes, which predisposes to a
long-term basis. The vast majority of reported suspicions (micro)deletion, duplication, or translocation in a child.
of child abuse are handled by social workers who are able Thus, when any chromosome deletion, duplication, or re-
to provide education and supportive help to the parents so arrangement is identiWed, parents are often tested.
they can deal with the situation. More recently, very small submicroscopic (too small to
be seen with the standard microscopic techniques) chro-
mosome deletions have been identiWed. They are referred
Chromosomal Disorders to as microdeletion syndromes. Once again, depending on
the speciWc gene or genes involved, features may vary and
Each human cell contains a full complement of genetic
patients are often presumed to have cerebral palsy early
information that is encoded in 46 chromosomes, which
on until the diagnosis is made. They will not be found on
are actually made up of 23 pairs of chromosomes, with one
standard chromosome studies, but instead require more
set of 23 donated by each parent. Chromosomes are com-
complex DNA tests. Identifying patterns of physical and
posed of genes, which are themselves composed of DNA.
behavioral features is important for the physician deciding
Each chromosome pair contains genes coding for similar
which syndrome, if any, should be tested for in any indi-
traits; we have 2 of almost every gene, one from our mother
vidual child.
and one from our father. One chromosome pair is made up
Subtelomeric deletions/rearrangements involve the very
of the sex chromosomes, consisting of the XX chromo-
ends of the chromosomes. Features of the speciWc chro-
some pair in a female and the XY pair in a male.
mosome abnormality vary. It is estimated that a subtelo-
A variety of things can go wrong so that a child has too
meric rearrangement will be identiWed in 4–7 percent of
few or too many chromosomes. In most cases the fetus
children with a combination of developmental delay and
does not survive, but there are speciWc instances where a
small size. Examples of microdeletion syndromes follow.
child is born with a chromosomal disorder that is compat-
ible with life but associated with various abnormalities, in- Angelman syndrome. Angelman syndrome is asso-
cluding central nervous system problems such as cerebral ciated with severely delayed or often no speech, severe sleep
palsy. Over 50% of the fetuses that are miscarried before problems, diYcult-to-control seizures, and discoordinated
12 weeks of gestation are found to have a chromosomal gait. Children have a very typical puppetlike movement of
anomaly. As the fetus continues to develop and get closer the arms and legs in walking. Most are described as very
to the delivery date, the chance of chromosomal anomalies happy children who rarely cry and often laugh aloud with-
and spontaneous abortion or miscarriage decreases. out obvious reason.
378 ♦ clonus / cochlear implants
Prader-Willi syndrome. Prader-Willi syndrome is develop an autistic-like lack of interest in social interaction.
associated with a unique unabated desire to eat; individ- Purposeful movement of the hands becomes limited and
uals with this syndrome thus become extremely obese. they display a characteristic hand-wringing behavior. Spas-
Children are typically very loose jointed, often with muscle ticity, seizures, progressive scoliosis, and unusual episodes
weakness, and most do not have normal intelligence. In- of hyperventilation develop over time.
fants often appear Xoppy and are paradoxically poor eaters A “Preserved Speech Variant” is a milder form of the
until approximately age 2, at which time they begin to eat disorder in which females share features of classic Rett
voraciously. syndrome such as autistic qualities, but often regain some
speech and hand use, and may not show growth failure.
Smith-Magenis syndrome. Smith-Magenis syn-
Since the gene that causes Rett syndrome has been
drome is another genetic disorder that has very typical be- identiWed, and a test made available for the disorder, we
haviors associated with it. Children with Smith-Magenis now know of living males with the disorder. Most develop
often display an unusual self-hugging behavior. Self- seizures, growth retardation, hypotonia, and severe growth
injury is typical, as is poor sleep. Most do not have normal retardation in early infancy. Some have even followed a
intelligence. Although often there are no typical facial fea- course similar to classically aVected females.
tures, these children can be Xoppy at birth and may de- Testing for Rett syndrome involves looking for changes
velop a progressive neuropathy (injury to the nerves) in in the gene itself in blood or tissue samples. It is laborious
the legs. and expensive, but is being oVered by many commercial
Genetic syndromes. The Fragile X syndrome is laboratories.
often considered in any male with developmental delay.
Females have 2 X chromosomes, while males have only one
Clonus
X and one Y chromosome. The genes on the X and Y chro-
mosomes are not the same; in males, the genes on the X Clonus is a symptom of spasticity. It is a special reXex from
and Y chromosomes are the only genes for which there are the spinal cord that is not being controlled by the normal
not 2 copies. Thus, an abnormal gene on the X chromo- mechanism in the brain. Rapid stretching of a muscle, such
some will cause symptoms in males, because there is no as pushing hard against the sole of the foot, causes the foot
normal gene to take over function. to make rhythmic movements. As the muscle is held un-
Males with Fragile X syndrome typically have mental der tension these rhythmic movements may gradually die
retardation, often with autistic features and hyperactivity. down, but in some people they are persistent. Constant
There are often distinctive facial features such as a long clonus is noted to be present when a certain pressure
face, large ears, a prominent jaw and after puberty, large causes a constant beating of the muscle. Clonus activity
testes. Many aVected children have few features except for that causes a beating motion at the ankle joint is very
the mental retardation. common in children with cerebral palsy. This can cause a
Because females have 2 X chromosomes, they are less problem for children who are sitting in wheelchairs, be-
likely to show symptoms of a defective gene on one of cause their legs may jump. AFO braces used on the ankle
them. However, ~50% of females who carry an aVected may suppress this reXex.
gene have learning disabilities or mild mental retardation.
A blood test to measure the number of DNA repeats in the
FMR1 gene can diagnose the Fragile X syndrome in both Cochlear Implants
males and females.
Cochlear implant is an auditory rehabilitation option for
The gene for Rett syndrome is also on the X chromo-
children with sensorineural (nerve) hearing loss that is not
some. This disorder, however, typically is seen only in fe-
“aid-able” with conventional hearing aids. In this situa-
males, rather than males. AVected males are thought to be
tion, the hearing aids are not powerful enough to bring the
miscarried because of the severe eVects of Rett syndrome
hearing thresholds into the normal range. Because most
on the developing brain. Since females have a second
types of sensorineural hearing loss involve disorders of the
MECP2 gene, the presence of one normal one may help to
cochlea (organ of hearing) but spare the nerve of hearing
oVset the eVects of the abnormal one, allowing these chil-
(cochlear nerve), it is possible to directly stimulate the
dren to survive to birth.
nerve of hearing electrically and bring sound information
Girls with classic Rett Syndrome develop normally un-
to the brain.
til about the second year of life when growth, including
The cochlear implant is a surgically placed device that
head size, begins to decelerate. They lose speech skills and
takes sound information from a microphone, transforms
complementary and alternative medicine / cat ♦ 379
Complementary medicine is used together with con-

ventional medicine, whereas alternative medicine is used
in place of conventional medicine. A third category, that of
integrative medicine, combines mainstream medical ther-
apies and CAM therapies for which there is good scientiWc
evidence of safety and eVectiveness.
Cochlear The federal government has established the National
nerve Center for Complementary and Alternative Medicine to
explore these practices in the context of rigorous science.
The center has sponsored research into many of these
alternative medical treatments and disseminates author-
itative information to the public and to medical profes-
sionals.
Chiropractic is an example of an alternative medical
Electrodes
in cochlea system. Chiropractors use manipulative therapy as a treat-
ment tool. Homeopathic medicine is another alternative
medical system, which uses small quantities of very diluted
medicinal substances to cure symptoms, when the same
substances given at higher doses would actually cause those
symptoms. Dietary supplements are products taken by
mouth that contain a “dietary ingredient” that is meant to
this into pulsed electrical signals that are sent along an elec- supplement the diet. These may include vitamins, miner-
trode array in the cochlea to directly stimulate the nerve of als, herbs, amino acids, and substances such as enzymes.
hearing. Not all children with profound sensorineural Dietary supplements can certainly be used in a comple-
hearing loss are candidates for cochlear implantation and mentary fashion with conventional medicine, but have
an experienced cochlear implant team composed of audi- also been used as an alternative to conventional medicine.
ologists, speech pathologists, deaf educators, language sci- Patients and families need to weigh the basis for the use
entists, surgeons, and social workers evaluate each patient of these products and, as with many other treatments, dis-
on an individual basis to help with this important decision. cuss with their medical practitioners both whether these
products are eVective and whether they are safe.
Complementar y and Alternative

Computerized Axial Tomography
Medicine
(CT scan, CAT scan)
(CAM)
The CT scan is a special type of x-ray where the computer
Complementary and alternative medicine (CAM) de- makes pictures using information from x-rays taken around
scribes a group of diverse medical practices and products the body. A CT scan can be made of any area of the body
that are not presently considered part of conventional and gives excellent deWnition of bone and soft tissue. Scans
medicine. While some CAM therapies have been studied of the brain can deWne major abnormalities such as tu-
scientiWcally, most have yet to be investigated through mors, increased Xuid in the brain, and major congenital
well-designed scientiWc studies, and questions remain as to deformities.
whether these therapies work for the medical conditions The dose of radiation is more than received from con-
for which they are used, and whether they are safe. Al- ventional x-rays, but not considered harmful. The patient
though it is often assumed that natural products such as lies on a table and needs to hold still. Contrast material is
herbs must be safe, this is not necessarily true, as many sometimes injected into the bloodstream to help deWne the
have signiWcant medicinal properties and may have signiW- blood vessels. CT scans cannot, however, detect all defor-
cant side eVects. Because the FDA does not have any juris- mities or scars.
diction over these products (they are considered a food
rather than a medicine), they are not tested for safety or Indications: For children with cerebral palsy, the
eVectiveness and may include harmful contaminants, or main reason CT scans are utilized is to deWne possible de-
they may not contain the ingredients they say they have. formities in the brain. Often a CT scan may be used in the
380 ♦ congenital infections / contracture, elbow
initial evaluation to see if there are any speciWc treatable de- Elbow Xexion contractures occurring in young chil-
formities of the brain, such as tumors. Hydrocephalus, or dren between the ages of 3 and 6 have a tendency to get
increased Xuid on the brain, can also be diagnosed with a slowly worse. If good elbow motion is maintained until
CT scan. Another common indication for obtaining a CT adolescence, generally it can be maintained throughout
scan is a child with a shunt for hydrocephalus. The func- adult life. However, there is a tendency for muscle stiVness
tion of the shunt is checked by obtaining a CT scan. to increase with aging, and further contracture may de-
velop in the late teenage years or adulthood.
BeneWts and risks: The beneWt of the CT scan is that
it provides a good view of the brain and can often be done Care and treatment: Children with a tendency to
much more quickly than an MR scan. The machine also is develop contractures may use night resting splints as well
a smaller tube and does not give the sense of being en- as physical therapy exercises to maintain range of motion.
closed in the way an MR scanner does. The risks of CT scan Since it is not certain whether contractures can be avoided
involve the fact that a low dose x-ray is used; also, because in certain children, there is a wide spectrum of opinion as
the scan still requires a child to hold still, some children to exactly how aggressive the medical professional should
may require sedation. Another problem with the CT scan be about splinting and stretching.
is that it is limited to deWning only major deformities of the The majority of children continue to work with some
brain. This means that there are subtle brain deformities combination of stretching and bracing; only in rare cases
that the CT scanner cannot deWne. do the Xexion contractures become so severe that cleaning
the Xexion crease or dressing the child becomes extremely
Maintenance and care: If a child is sedated, care
diYcult. In these circumstances, release of the biceps and
must be taken to monitor the child until the sedation has the brachial muscles at the elbow is recommended. This is
worn oV. a relatively minor procedure and is frequently combined
with other procedures that address speciWc functional
Congenital Infections care problems. For some children with severe hemiplegia,
cosmetic concerns are such that release of the muscles to
(cytomegalovirus [CMV], toxoplasmosis, syphilis, let the arm extend is of great beneWt for the child’s self-
rubella [German measles], herpes simplex virus, image.
varicella [chicken pox])
BeneWts and risks: The beneWts of a successful pro-
A number of infectious agents can infect a pregnant cedure are greater ease in cleaning and dressing the child,
woman and then infect the fetus she is carrying, causing a and an enhanced appearance. Surgical release is a rather
variety of physical abnormalities and sometimes brain simple procedure with few complications. There is a risk
damage resulting in cerebral palsy. These infections may be that brace wear may cause skin breakdown, so the skin
acquired during pregnancy, during delivery, or occasion- needs to be monitored daily after the brace has been re-
ally following birth. Frequently, these infections are sub- moved. Also, stretching, if done too aggressively, may
clinical (meaning that they do not show any symptoms), cause fractures of the arm. Surgical release of the elbow, if
and yet can later result in neurological damage. The infec- it is too aggressive, may result in the elbow’s being stuck in
tions listed here are known to cause brain damage in the fe- an extended position—which is even more cosmetically
tus or young child. objectionable and more functionally debilitating than a
Xexed elbow. The goal should be to have the elbow at ap-
proximately 90 to 100 degrees if the child is wheelchair
Contracture, Elbow
bound or approximately 120 degrees if ambulatory.
Elbow Xexion contractures are present in children with se-
Maintenance and care: The main instruction after
verely involved quadriplegic or hemiplegic cerebral palsy.
surgery is to work with range of motion. For parents, this
In the severest form, the elbow is tightly Xexed, and it is
may involve gentle work with range of motion during
impossible to extend the elbow enough to clean the elbow
bathing or at dressing time, and can often be done in the
crease. This causes a foul-smelling moist area. When the
context of the normal activities of daily living rather than
elbow cannot be extended it is also diYcult to dress the
setting aside special exercise times. Braces used may be
child, especially to put sleeves on the arm. Elbow Xexion
quite Xexible and variable. If surgical release is performed,
contractures in children with hemiplegia are cosmetically
it is recommended to continue with exercise and occa-
unappealing, especially when the child walks, because the
sionally with a bracing program for at least six months to a
elbow is held Xexed up.
year.
contracture, finger / contracture, peroneal ♦ 381
Contracture, Finger ing the elbow involves less exact lengthening. The more
commonly used procedure at the wrist is more exactly
(Xexor tendon lengthening)
controlled, and only the sublimis tendons are lengthened.
Tightness of the Wnger Xexion muscles often exists side by In severe deformities, the profundus tendons may need
side with another problem: wrist drop and tightness of the lengthening as well.
muscles that pull the wrist into Xexion. There are two
BeneWts and risks: The beneWts are both cosmetic
groups of muscles that cause the Wngers to Xex. One is the
and functional. Overlengthening, which removes the
profundus muscle, extending from the forearm all the way
strength from the muscles and decreases the ability to close
to the tip of each Wnger. This muscle does not cross the el-
the Wngers or to grasp objects, may be a signiWcant com-
bow and is usually the least likely to have signiWcant short-
plication that is best avoided by conservative, controlled
ness. The other is the Xexor sublimis muscle, which starts
lengthening. If both the sublimis and the profundus ten-
above the elbow and goes to the Wrst joint (PIP joint) of
dons are lengthened, major weakness is a higher risk. If
each Wnger, and is primarily involved with contractures.
only the sublimis tendons are lengthened, there is a risk of
developing swan-neck deformities, which means that the
Wrst joint (the PIP joint) of the Wnger may go into exten-
sion while the joint at the end of the Wnger (the DIP joint)
Xexes. This causes the Wngers to lock and makes it diYcult
for a person to use them for grasping.
Another complication that may occur involves scarring
of the tendons, resulting in decreased motion. This can
usually be treated with occupational therapy through mo-
tion exercises. Occasionally, surgery is needed. Following
lengthenings, the Wngers are usually immobilized, slightly
Xexed, in a cast, and the tendons are allowed to heal for
Tight flexor tendon four weeks before motion begins.
Contracture, Peroneal
Often the Wnger Xexor muscles are not tight when the (peroneus longus contracture, peroneal tendon
wrist is in the Xexed position, but if surgical procedures are lengthening)
done to correct the Wxed Xexion and put the wrist in a bet-
ter position, at times the Wnger muscles become so tight The peroneal tendons and muscles are located along the
that the Wngers cannot be straightened out. The tendency outside of the leg (lateral side) and pull the foot out. When
over time is for these muscles gradually to get tighter, al- they are spastic or too tight they cause severe Xat feet.
though they seldom become so tight that the Wngers are These muscles are not commonly severely spastic, but
clenched into the palm. some children do develop signiWcant spasticity.
Care and treatment: The primary treatment is

splinting, which is usually used in addition to the wrist
drop splints that are described in the wrist contracture sec-
tion. It is seldom necessary to treat the Wnger Xexors or to
brace the Wnger Xexion contractures without also address-
Tight peroneal
ing the wrist Xexion problem. If a decision has been made
tendons
to treat the wrist Xexion contractures and the Wnger Xexors
are tight, they should be treated surgically at the same time.
The surger y: There are two surgical approaches,

both of which include loosening the muscles at their inser-
tion above the elbow and allowing them to slide toward
Flattened foot
the Wngers, which is generally referred to as the muscle
slide procedure and involves identifying and lengthening
each tendon with a Z-cut. The Wrst procedure of lengthen-
382 ♦ contracture, pronator / contracture, shoulder
Care and treatment: If severe spasticity seems to be comes a signiWcant cosmetic deformity, especially for the
a signiWcant cause of Xatfootedness, lengthening these ten- child with hemiplegia who is walking and participating in
dons may be necessary. The outcome of peroneal tendon normal daily activities.
lengthening, however, is very unreliable, with a high inci-
The surger y: The treatment for pronation contrac-
dence of either recurrent deformity within several years or
ture involves either releasing the pronator muscle from its
the developing of the opposite deformity if too much
insertion on the forearm or transferring it to wind around
lengthening is done. Peroneal tendon lengthening is not a
the bone in the opposite direction—making the hand su-
commonly performed operation because of its unreliabil-
pine, or turned up. There are surgeons who believe that
ity. Usually it is better to use a brace (AFO)—and if this is
the transfer provides a better outcome. The determination
not possible, to proceed with subtalar fusion, which in-
of whether to release or transfer varies, and for most pa-
volves fusing the bone in the back of the foot to prevent a
tients the two provide essentially the same results.
Xat foot deformity.
BeneWts and risks: BeneWts are the ability to see the
palm and therefore possibly to use it better, and a more
Contracture, Pronator
pleasing appearance. The complications from pronator re-
(pronator teres transfer, pronator release) lease or transfer surgery include the possibility of develop-
ing the opposite deformity, but this seldom occurs. The
A common contracture that develops in children with
procedure is quite minor and is usually incorporated as
cerebral palsy is a pronation contracture, where the hand is
one of a number of procedures to deal with other defor-
turned palm away from the face. The primary muscle in-
mities at the same time.
volved is called the pronator teres, which is the muscle that
comes from just above the elbow to the middle of the fore- After-surger y care: Following the operation, the
arm. This contracture occurs commonly in children with patient is usually in a cast above the elbow for four to six
hemiplegia and is present in some children with moderate weeks. Exercises are subsequently started; bracing is not
to severe quadriplegia. The deformity begins as the child’s used.
preferred position. With growth, the muscle frequently
becomes tighter and more contracted.
Contracture, Shoulder
(pectoralis contracture, latissimus dorsi
contracture)
Tight pronator teres muscle Shoulder contractures are common in children with severe
quadriplegia. However, they are seldom a problem except
with the child whose shoulder is pulled down to the side
with the hand across the chest—or, alternatively, with the
child whose shoulder may be pulled down to the side with
the arm stuck straight out. If the arm is pulled across the
chest, it is called an internal rotation contracture, and if it is
pulled out away from the body it is called an external rota-
Care and treatment: Exercises to stretch this muscle tion contracture. Internal rotation contractures are usually
should be incorporated as part of the child’s elbow and due to the contracture of the pectoralis major and minor
hand exercises. Splinting the muscle is diYcult because muscles, and the therapy usually involves working at range
torsional splints require tying up the hand from above the of motion. External rotation contractures are often due to
elbow all the way down to the wrist. Splinting is generally the contracture of the teres minor and latissimus dorsi
not useful because of the diYculty of keeping the arm in a muscles. Again, the treatment involves working on physi-
Wxed position. This deformity does not cause any signiW- cal therapy and positioning.
cant hygiene or dressing problems; however, it does cause
The surger y: For those severe external rotation con-
functional problems because the palm and Wngertips are
tractures that cannot be stretched out with therapy, sur-
turned out of sight, making it diYcult to manipulate
gery may be necessary, usually an osteotomy just below the
switches and joysticks because the child cannot see how his
shoulder. The arm must be turned in and held in this posi-
palm and Wngertips are moving. It also makes picking up
tion while the bone heals. For severe internal rotation con-
utensils or other objects diYcult. Pronation often be-
contracture, thumb ♦ 383
tractures, a pectoralis release is occasionally necessary. This

is a very small procedure done at the shoulder which allows
the arm to rotate externally far enough to allow for per-
sonal hygiene and dressing. Thumb pulled
to palm of hand
Indications: The main indication for surgical proce-
dures for internal rotation contractures is the need to im-
prove the caregiver’s ability to dress the child, especially to
place the arms in sleeves and for personal hygiene—prima-
rily to clean the armpits. For external rotation contrac-
tures, the major problem develops in a larger child when it
is diYcult to get the child through doors and to sit well in
a wheelchair.
BeneWts and risks: The major beneWt is improved

range of motion, which allows the caregiver to clean and to
dress the child, and increased ease of moving the child. The
complications from either of these procedures may involve
overcorrection. Overcorrection is a special concern with
the internally rotated arm: release should not be overly ag-
gressive, since the arm may become Wxed in external rota- treatment for thumb deformities is not needed. If the
tion. Likewise, for the externally rotated arm that is surgi- thumb is tightly drawn into the hand and Xexed into the
cally rotated in, too much internal rotation is possible. palm, then hygiene is a problem, and the appropriate treat-
ment is almost always surgical. The most common tech-
After-surger y care: The postoperative treatment nique involves fusing the joint at the base of the thumb
usually is immediate, aggressive physical therapy for the (the MCP joint or the IP joint), with release of the thumb
muscle releases. A period of splint immobilization of three Xexor tendon and the adductor tendon in the palm. Some-
to four weeks is necessary after the osteotomy to allow times a tendon transfer to help pull the thumb out of the
healing. palm is needed. These fusions are minor procedures in
which the cartilage and the joint are removed, and the
bone is held with a pin for four to six weeks as the bones
Contracture, Thumb
grow together. This is a permanent correction.
(adducted thumb, thumb tendon release, thumb Initially, hands that are functional but causing diYcul-
fusion) ties should be splinted. Either rigid plastic splints to deepen
the space between the index Wnger and the thumb or a
Thumb deformities in children with cerebral palsy are very
splint that is made as part of a hand or wrist splint is ap-
common. The most common problem is a thumb that is
propriate. Soft splints are available which hook over the
drawn close to the index Wnger, making the web space be-
thumb and pull it back. These are useful to pull the thumb
tween the index Wnger and the thumb very tight and nar-
out of the palm to improve use of the hand and prevent de-
row. This makes it diYcult to get the thumb out away from
velopment of contractures. This type of splinting is espe-
the hand to grasp objects such as balls or glasses. Some-
cially useful during childhood from the ages of 2 to 10.
times the thumb is Xexed tightly into the palm. In some
Adolescents almost never accept splinting because of the
children this can make hygiene very diYcult, with the palm
attention drawn to the hand’s appearance. Functionally,
becoming moist and foul smelling. From a functional per-
the splinting usually is more of an impediment to the teen
spective, the problem of the thumb in the hand makes
than a beneWt. If thumb deformities continue to be a func-
grasping objects more diYcult; pinching from the tip of
tional problem they are generally best handled with surgi-
the thumb to the index or the long Wngers may also be
cal correction, which is usually done as part of multiple
diYcult. In some children the Wrst thumb joint (the IP
other procedures either on the same arm or on the legs.
joint) may also become extended, and the joint at the base
The timing is related in part to the timing of other proce-
of the thumb (the MCP joint) may be Xexed or extended.
dures.
Care and treatment: As long as the hand can be
The surger y: The simplest surgical procedure is the
cleaned and the palm does not become moist and smelly,
release of the thumb adductor muscle with a small incision
384 ♦ contracture, wrist
in the palm, which often needs to be augmented with the Tight flexor carpi-ulnaris muscle
addition of transfers to help increase the strength or power
of the thumb-extending muscles. The usual muscle that is
used is the muscle in the palm called the palmaris longus.
There are multiple other muscles such as Wnger Xexor
muscles or wrist Xexor muscles that may be used for this
purpose as well. Occasionally, with a severely involved
hand, fusion of one of the thumb joints may also be indi-
cated.
The surgical procedures used to treat thumb deformi-
ties vary among surgeons. The same surgeon may use
many diVerent combinations because thumb deformities
are quite diVerent from one hand to the next. The decision
about which muscles to transfer and if fusions are indi- Muscle transferred to back of hand
cated is determined by physical examination and the sur-
geon’s speciWc experience.
BeneWts and risks: BeneWts include improved use

of the hand and better hygiene. One risk is that bracing
thumb deformities may cause skin irritation. Observation
of the skin and well-Wtting braces can prevent this compli-
cation. The surgical complications are related to overcor-
rection of deformities, the severest being the thumb stuck At this point, correction of the deformity becomes
far out of the palm, which creates signiWcant cosmetic more diYcult. In its severest form, the hand may be folded
problems and diYculties with dressing, such as getting a completely onto the forearm, making skin care and hy-
hand through a sleeve. Although complications are rare, giene diYcult and creating a moist area that may start to
the more common complication is the deformity that is smell. For those children who have a mild case of cerebral
not completely corrected. It is much better to have some palsy and are more functional, as the wrist Xexion becomes
residual tightness with the thumb in toward the hand than more contracted, more diYculty with hand use—espe-
to have the opposite problem. cially with Wnger grasps—is encountered.
Maintenance and care: After surgical correction, Care and treatment: The primary treatment for
casting is usually required for four to six weeks, sometimes wrist Xexion contracture is an exercise program with gentle
followed by splinting. In a functional hand, some occu- stretching and the use of resting splints. If splints are used
pational therapy aimed at achieving the maximum bene- to cover the hand, the child may lose interest in using the
Wt from the surgery is usually necessary for one to three hand, and its ability to stay limber diminishes. For this rea-
months. son, some combination of splint use and functional use
is best. For wrists that are not developing signiWcant con-
tractures and can be brought completely into an overcor-
Contracture, Wrist rected position, overtreatment with braces should be
avoided. For the child with severe quadriplegia and no
(wrist tendon transfer)
functional hand use, the goal should be to create suYcient
Wrist Xexion is a common deformity in children with Xexibility to allow for good hygiene and ease of dressing.
hemiplegia and severe quadriplegia. The wrist is dropped The development of some contracture in this situation is
in position and is sometimes referred to as a dropped wrist. not detrimental.
Occasionally, the child is able to bring the wrist up to a For the child with functional use of the hand, attempts
neutral position. In this Xexed position it is diYcult to get should be made to keep the wrist in a functional position.
good Wnger grasp because the wrist position makes the If this is not possible, as the child grows into adolescence
Wnger Xexion muscles much weaker. This Xexion contrac- surgical correction should be considered. Usually no ear-
ture develops in the middle childhood period between the lier than age 6 and generally between the ages of 9 and 12 is
ages of 3 and 6. Initially, it is Xexible and does not cause any the best time for surgery. Children with signiWcant wrist
problems, but tightness develops as the child continues to Xexion contractures and hemiplegia, even if they are non-
grow into the early teens; during the adolescent growth functional, often have cosmetic appearance concerns and
spurt, the muscles become shorter relative to the bone. should be considered for surgical corrections. An awkward-
cotrel-dubousset instrumentation ♦ 385
looking hand draws much less attention if it is corrected, Cotrel-Dubousset Instrumentation

even if its function is not changed. The best age for the sur-
(CD rod, TSRH instrumentation)
gery is at or just before the adolescent growth spurt in the
early teen years. CD rods are metal rods and hooks that are attached to the
spine to correct and maintain correction of spinal defor-
The surger y: Surgical treatment typically involves
mities until bone fusion occurs. This instrumentation sys-
transfer of the muscle on the little Wnger side of the wrist
tem involves rigid rods with a number of hooks that attach
called the Xexor carpi-ulnaris. It is attached to the muscles
to the vertebrae. A very popular method of Wxing the rods
that lift the wrist, usually the extensor carpi-radialis brevis.
to the spine involves the use of screws in the vertebra called
For children who have diYculty lifting their Wngers, the
pedicle screws.
muscle is transferred into the extensor digitorum commu-
nis muscle, which helps to extend the Wngers. This transfer, Indications: This system of spinal instrumentation
along with tightening the muscles that lift the wrist, im- is currently the one most commonly used for idiopathic
proves the straightening of both the Wngers and the wrist scoliosis, which is side curving of the spine in otherwise
at the same time. healthy children or adolescents. It has the advantage of giv-
The exact tendon that is transferred into each muscle ing a better correction than the Harrington rod, the old
varies and is determined by clinical examination. There are system, which has only two connections to the spine. CD
some laboratory tests available that use electromyographs rods provide a better cosmetic result and are stronger, thus
(which involve inserting small wires into the muscle) and having less risk of breaking. Some surgeons are experi-
observation of the hand as it functions, thus determining menting with their use in children with cerebral palsy, but
which muscles are functioning and in what fashion. These the indication for use in scoliosis in this population re-
tendon transfers are well established and are not new or ex- mains uncertain at best.
perimental.
BeneWts and risks: The beneWt of these rods is that
BeneWts and risks: BeneWts include improved cos- they are very strong and seldom break; therefore, braces or
metic appearance and better hygiene; often function is im- casts are not usually used after instrumentation. The com-
proved as well. The main problem associated with splints
is the possibility of causing skin irritation and diminished
function. Overly aggressive stretching of very tightly con-
tracted muscle may cause fractures and should be avoided.
The major surgical complications are overcorrection or
undercorrection. It is best to end up with less than perfect
correction if one needs to consider making an error in one
direction.
One severe complication is an overextension, back-
ward, of the wrist. This could occur with too much tendon
release at the palm side of the wrist or if the tendon trans-
fer on the wrist is too tight. This is especially detrimental if
the transfer is into the Wnger-extending tendons, which
means the Wngers cannot be bent. It could also make grasp-
ing diYcult. These problems can be corrected by length-
ening the transfer tendons, but it is best to avoid them by
not placing the transfers too tightly. Occasionally the
transferred tendons may tear out, leaving the person with
essentially the same deformity he started with.
After-surger y care: After surgical transfers for cor-

rection of this problem the person usually has to wear a
cast for four to six weeks, followed by a positional brace,
usually worn at night. After one year all bracing is stopped.
Intense occupational therapy aimed at improving function
and mobility is recommended after the surgical healing
period is over, usually beginning at four to six weeks after
surgery.
386 ♦ crossed extension reflex / crouch
plications of CD rods are mainly those related to posterior

spinal fusions. Some of the hooks may slip oV the verte-
brae. Pedicle screws have less risk than hooks of becoming
dislodged. However, there is a risk of nerve injury when
they are inserted. Because of the multiple hooks, for a few
patients the bone fusion does not heal or an infection may
develop around the metal.
Maintenance and care: After the posterior spinal

fusion with CD rods, the patient may usually return to
nearly normal activity except for contact sports, which the
child should wait six months before pursuing.
Crossed Extension ReXex

The crossed extension reXex is present at birth; in normal
children, it disappears between the fourth and sixth week
of life. If the reXex is present much beyond this age, it in-
dicates brain abnormalities and spastic cerebral palsy. This
reXex is elicited by applying a noxious stimulus (such as a
pinprick) to the sole of one foot, which is held in complete
extension. The reXex consists of the other leg Wrst Xexing,
then being brought forward, and Wnally extending, as if to (iliopsoas) may be helpful when the tightness is due pri-
push away the noxious stimulus. marily to tone. If the crouched gait is getting worse in spite
of therapy, a ground reaction ankle-foot orthosis which
Crouch locks the ankle may be necessary. If this fails and the
crouching continues to get worse or the hamstring and hip
(crouched gait, tight hamstring, tight hip Xexor, Xexors are very tight, lengthening the hamstring muscles
overlengthened Achilles tendon) and hip Xexors, especially the iliopsoas muscles, should
be considered. If the Achilles tendon is tight it may need to
A crouched gait is commonly seen in children with diple-
be lengthened, but with extreme caution, since an over-
gia: they stand with their knees and their hips Xexed, and
lengthened Achilles tendon will certainly make the crouch-
often with their ankles dorsiXexed, so that their weight is
ing worse.
resting on the heels. Children with a crouched gait may
The complications of a long-term crouch are knee pain
also stand up on tiptoe. When it is mild, this natural pat-
and the gradually reduced ability to walk. The knee pain is
tern works quite well and there is no need to correct it.
caused by increased pressure on the kneecap and may be-
However, if the crouch becomes severe, for example with
come severe enough to prohibit walking. If muscles are
knee Xexion of 45 degrees when standing, then it becomes
lengthened early in a child’s life (before age 8), this often
a very energy-consuming gait and it is extremely diYcult
needs to be repeated at adolescence, since growth will
to walk. When a child gains weight, often the crouching
again cause shortness in the muscle. If, as the child reaches
becomes more severe, especially during a growth spurt.
full maturity, the degree of crouching is mild, it generally
A crouched gait is usually caused by a combination of
does not get worse. If it is severe, however, it tends to get
factors, the primary cause being a tight hamstring muscle.
slowly worse. Overlengthening the muscles, which may
Tight hip Xexor muscles are another cause, and oftentimes
cause the knee to bend backward, may be another compli-
an overlengthened Achilles tendon may be a contributing
cation of treatment. This gait pattern is even worse than
factor.
crouched gait, and it should be avoided by conservative
Care and treatment: The treatment of a crouched lengthening of the muscles with the risk of needing repeat
gait initially involves physical therapy, with therapist and lengthening.
child working at stretching the hip Xexors and the ham- After surgery, some surgeons use long leg or hip spica
string muscles. In younger patients, botulinum toxin in- casts for three to six weeks, followed by physical therapy
jections into the hamstring muscle and hip Xexor muscle exercises for stretching and teaching an improved gait pat-
crutches ♦ 387
tern. Many surgeons don’t use casts, but instead use re- child to hold onto the crutches, putting the weight on the
movable splints that are worn part time in conjunction hands.
with physical therapy that is started immediately, usually
Indications: Crutches are most useful for those chil-
on the Wrst or second day after surgery. Braces, either stan-
dren who are having a great deal of diYculty balancing.
dard nonhinged or ground reaction AFOs, are often used
There is also a small group of children with severe leg in-
to help reduce the crouch for the Wrst 6 to 12 months after
volvement but excellent arm function who become excel-
surgery.
lent crutch users. There is a tendency, however, for the
child to lean forward when using crutches. In this case, she
Crutches might try one of the many diVerent kinds of canes that are
only held onto by the hand and do not have any other con-
(canes, quadcanes, Lofstrand crutches, walking
tact with the arm. The quadcane has small feet and stands
sticks)
on its own, but isn’t much more helpful than a standard
“Crutches” make up a group of devices that may be used to cane. A good choice is the use of a straight stick, which al-
help a child with mild cerebral palsy walk. The standard lows the child to hold it slightly higher, giving her extra
crutches that go under the armpit, which are often used af- balance. Canes are not used as much to lean against Xoors
ter people break their legs, are seldom used for children as they are for the additional weight they provide for the
with cerebral palsy because there is a tendency for the child child to hold in front of herself.
to hang on with the armpit. This incorrect use usually leads The resulting bent posture should not prevent a child
to very poor standing posture. If crutches are recom- from trying crutches or canes. For most children with cere-
mended for a child with CP, most physicians prefer the bral palsy, the use of crutches or canes is temporary, and
Lofstrand or forearm crutches, which have a ring through most children who are able to walk eventually abandon all
which the arm goes and a handle for the child’s hand. This assistive devices. However, a few children do permanently
discourages leaning on the crutches and requires the need the extra assistance for balance, and the device that
388 ♦ cyanotic extremities / decubitus ulcers
they are most comfortable with is generally the correct of circulation, the extremities are often cold to the touch
one. Trying out multiple devices such as Lofstrand crutches and can show marked changes in color. These circulatory
and diVerent types of canes allows the child to Wnd the problems are not the same as those seen in individuals with
one that he is most comfortable with. If a child refuses to diabetes or cardiac abnormalities, or in elderly individuals.
use a speciWc crutch or cane, it usually is his way of telling The individual’s feet should be kept as warm as possible
you that either he doesn’t need it or he is uncomfortable with appropriate socks and shoes. They are not at risk for
with it. skin breakdown due to this poor circulation. In the child
with cerebral palsy, these changes in color and temperature
BeneWts and risks: Greater balance is the most ob-
are only cosmetic and do not cause discomfort for the
vious beneWt of using crutches or a cane, but often there child. Except for making sure that the feet don’t get too
are risks involved when a child is moved from a walker to
cold, there should be no other restrictions or concerns.
crutches or canes. The child may initially have a cosmeti-
cally poor forward-bent posture, sometimes crouching
further with his knees bent. It is best to have a therapist Cytomegalovirus
work with this transition at the outset and then move to
(CMV)
using the new device around the house.
Moving from a walker to canes or crutches often makes Cytomegalovirus is a relatively common viral infection
the child more unstable, so practice use should be done in among the general population. A person infected with
a safe environment. The child may also feel less eYcient CMV may simply have symptoms of a mild cold and not
and slower with crutches compared to a walker. If there are realize that she has this particular virus. Approximately 15
any questions about the child’s frequent falling, the use of percent of women who are infected for the Wrst time dur-
a helmet should be encouraged to avoid head injuries. ing pregnancy will have a baby with some physical symp-
Practice falling should be strongly encouraged and re- toms at birth, while the rest will have no symptoms at all.
hearsed under the guidance of a physical therapist in a safe Approximately 5 percent of infants with congenital CMV
therapy environment. infection will have profound involvement, with growth re-
tardation in utero, brain damage, jaundice, enlarged spleen
Maintenance and care: All crutches and canes
or liver, microcephaly and severe hearing impairment.
should have rubber tips where they contact the Xoor to pre-
Even among the 85 percent of infected infants with no
vent slipping. These rubber tips should be inspected fre-
symptoms at birth, some will ultimately have hearing or
quently to make sure that they have not worn through; as
vision problems, mental retardation, or dysfunction in
soon as there is signiWcant wear and the rubber starts slip-
school as a result of the CMV infection. The CT scan or
ping, the tips should be replaced. Every six months while
magnetic resonance image of the baby shows calciWcations
the child is still growing, the length of canes and crutches
in the brain if the infection did involve the brain. A baby
should be evaluated by the therapist or physician who is
born with congenital CMV infection may continue to
following the child, so that adjustments appropriate to the
carry and shed the virus in his urine for months or even
child’s growth can be made. Most crutches and canes have
years. However, exclusion of such children from schools
a Wxed life expectancy of two to three years, especially if
or institutions is not justiWed, since infection without
they are used heavily by an active child. As soon as connec-
symptoms is common to newborn infants (approximately
tions become loose or start to slip, the device should be re-
1 percent of all newborns are infected in utero and excrete
paired or replaced.
CMV at birth). Instead, careful handwashing, especially
after changing diapers, is recommended in caring for all
Cyanotic Extremities children.
(blue hands, blue feet)

Decubitus ulcers
When skin color is a light to dark blue and the skin some-
what cool, this is called cyanosis. This blue discoloration (bedsores)
may be due to poor oxygen saturation in the blood and
Decubitus ulcers, or bedsores, are breaks in the skin which
may indicate heart and lung trouble. In the child with cere-
occur due to pressure or friction over areas of bony promi-
bral palsy, cyanosis in the hands and feet, is almost always
nences. The most common sites for these ulcers are over
due to poor regulation of blood Xow, rather than to heart
the sacrum, or tailbone area, from lying or sitting; over the
or lung problems.
ischial tuberosities, or the prominences on the bottom of
Because of nervous system diYculties and poor control
developmental delay / developmental milestones ♦ 389
the pelvis, where one puts most of the pressure when sit- (such as the ability to walk), or a delay in cognitive devel-
ting; or over the side of the hip from lying on one side too opment (such as the ability to recognize shapes or stack
much. Other places that may develop ulcers are over blocks), or a delay in language (both spoken words and un-
prominent areas of metal rods or plates that have been used derstanding of language).
to correct alignments of bones. Also, the bony areas about Many children who are developmentally delayed at a
the ankle or knee can occasionally develop skin break- young age eventually develop physically and cognitively so
down. Bedsores are caused by lying in one position for too that by the time they enter school they are within the de-
long without turning or changing positions. velopmental norm. Thus, the term does not generally im-
The best treatment for decubitus ulcers is prevention. ply a permanent condition. When properly used, the term
Prevention requires that the skin be inspected daily, and indicates that there is some expectation that the individual
any areas that are red or appear to be developing increased may eventually reach normal developmental milestones.
pressure need to be carefully protected. This means these When the developmental lag continues into late childhood
areas should be carefully padded to avoid pressure and that or the teenage years, then developmental delay should not
the position in which the child is lying needs to be avoided. be used as a diagnosis; instead, a speciWc term such as cere-
In prevention, the most important element is the length of bral palsy or mental retardation should be applied.
time involved. In other words, a child lying for Wve min-
utes on an area at risk for developing skin breakdown may
be able to do so safely. However, if the child lies on this Developmental Disability
area for eight hours during sleep, skin breakdown will oc- Any disability developed during childhood which impacts
cur rapidly. on the child’s normal development is considered a devel-
If the breakdown has started, then the primary treat- opmental disability. This is a very broad category that in-
ment is keeping the area clean and dry and avoiding pres- cludes such diverse diagnoses as autism, cerebral palsy,
sure on it. This may mean lying in a diVerent position or mental retardation, genetic conditions associated with
avoiding sitting, if that was the cause. Oftentimes, changes delays (such as Down syndrome) and many other condi-
in wheelchairs or mattresses are necessary. Careful atten- tions.
tion to the seating system must be paid when this problem
starts to occur. Pressure mapping may be used to assess the
child while sitting in his wheelchair. Developmental Dysphasia
If the skin breakdown becomes very deep (which oc-
curs only rarely), using special medicated creams and The development of language and speech is delayed in
avoiding pressure on the area sometimes will still allow the many children with cerebral palsy. When this delay is due
wound to heal. These deep wounds often, however, need to neurological problems originating in the brain, it is
surgical treatment, which involves removing all of the termed developmental dysphasia. This is a common prob-
dead tissue and adding new tissue with a good blood lem in children with athetoid pattern cerebral palsy and is
supply. This procedure is usually performed by a plastic treated with speech therapy and augmentative communi-
surgeon. cation.
Children with cerebral palsy usually have good sensa-
tion and are at low risk for developing decubitus ulcers.
Developmental Milestones
However, some children who have more severe involve-
ment and are very thin may have prominent bones and are The normal development of a child includes a speciWc
thus at high risk, especially when they are inside casts or if growth process that involves progress reaching speciWc
they are very ill and lack their normal ability to move or re- milestones, which are often used to monitor and chart the
spond. For such children, it is essential that the caregiver child’s normal development. These include a child’s ability
inspect the skin every day during bathing and diapering to to crawl, to walk, to understand what is said to them, and
make certain that no skin breakdown is occurring. to speak in sentences.
In a child with CP, however, the typical developmental
milestones are often delayed. The speciWc age at which de-
Developmental Delay velopmental milestones are reached is unique to each child
This term is used to describe a child who has not attained with cerebral palsy. It is very diYcult to make long-range
normal development when compared to the standard predictions for an individual child about how rapidly these
population. There may be a delay in physical development developmental milestones will be reached or even whether
they will be.
390 ♦ diplegia / dislocation, hip
Diplegia enough to prohibit driving a wheelchair or using eating

utensils. There is also signiWcant limitation in the degree to
(paraplegia)
which the hand can be turned palm up. Because the defor-
Diplegia and paraplegia are terms used to describe chil- mity is subtle, often these dislocations are not noticed for
dren with cerebral palsy who have diYculty using their many months and sometimes years, and when they are no-
legs. Generally the term diplegia is applied to children with ticed they are usually functionally well compensated for by
cerebral palsy who, in addition to the leg problems, have the child.
some diYculty with upper body control, including use of Generally, the disability caused by a dislocated elbow is
their arms and Wne motor skills. If the motor problem is so minimal that risking a surgical procedure is not war-
secondary to a spinal cord injury or spina biWda, the term ranted. In the late teenage years or early adulthood, pain
generally applied is paraplegia, which means that the child develops from the dislocated radial head, which can be re-
has minimal or no limitation of the arms above the area moved surgically, ending the pain while not limiting mo-
of injury. Most children with diplegic cerebral palsy walk tion. After surgery, the elbow should be splinted for three
either independently or with assistive devices, such as weeks, and a gentle range of exercises should be com-
crutches or canes. pleted. Complications from the surgery are rare, but there
may be some persistent pain and a small loss of movement.
Discretionar y Trust
Dislocation, Hip
This is a legal term. It means that the trustee (the person
(spastic hip subluxation, spastic hip dislocation,
responsible for a trust) has the authority or the ability to
acquired hip dislocation, congenital hip
use the funds from the trust toward the goals outlined in
dislocation, migration index, Reimers Migration
the deWnition of the trust. SpeciWcally, the parent who has
Index, developmental hip dislocation, CDH, DDH)
a discretionary trust in his or her child’s name may be re-
quired to use funds from that trust for the care and beneWt The terms congenital hip dislocation and developmental
of the child, but the parent is given the discretion to deWne dislocation of the hip (DDH) refer to conditions in which
what care and beneWts mean for their child. the hip has already started to come out of the joint or is
already out of the joint when the child is born. If this is
treated early and aggressively with splinting, a normal hip
Dislocation, Elbow usually develops and is functioning perfectly by 6 to 9
(radial head dislocation) months of age. If the hip dislocation is discovered later
in a child’s life, it can be quite a diYcult problem, often re-
Dislocation of the whole elbow is rare in children with
quiring surgery, especially if not discovered until 18 months
cerebral palsy but does occasionally occur in a child who
of age or later.
has an extremely severe spastic pattern and whose function
Experts don’t know the exact causes of congenital hip
is limited. Although the dislocation causes a cosmetic de-
dislocation, but evidence suggests it is related to the
formity, usually the arm can easily be placed into a sleeve.
mother’s pelvic anatomy, family history, and, most of all,
An isolated radial head dislocation, where the small bone
how the child is lying in utero. These factors are further in-
just below the elbow becomes dislocated, is much more
Xuenced by how the child is positioned and cared for as an
common. This deformity has the appearance of a lump on
infant.
the outside of the elbow and may limit bending, but not
Congenital hip dislocation is an entirely diVerent con-
dition from the hip dislocation developed by children with
cerebral palsy. It is possible for a child with cerebral palsy
also to have congenital hip dislocation. Usually, though,
hip dislocation related to cerebral palsy occurs in middle
Head of dislocated radius bone and late childhood, from age 2 to 10 years. Almost always
these children have normal hips until 18 to 24 months of
age, but then, under the inXuence of bone growth and
short, spastic muscles, the ball of the hip joint is gradually
pulled out of the socket. The process occurs slowly, taking
from many months to years.
There are many diVerent terms for hip dislocation in
dislocation, hip ♦ 391
Subluxed head Dislocated head

of femur bone of femur bone
50% uncovered 100% uncovered
by hip socket by hip socket
Tight adductor
muscles
children with cerebral palsy. The most widely used is spas- indicate discomfort until late in the subluxation phase and
tic hip dislocation because this term conveys the idea that perhaps not until the hips are actually dislocating.
spasticity causes the dislocation. Another widely used term After the hips become dislocated they are no longer in
is acquired hip dislocation, which distinguishes it from con- a nice smooth cup, and abnormal wear on the end of the
genital hip dislocation—“congenital” implying that the bone starts taking place. Arthritis sets in and, over a num-
child is born with the problem. ber of years, gradually becomes worse. Children with cere-
The term subluxation means that the hip joint is par- bral palsy who have an untreated dislocated hip can expect
tially out of the socket but is still in contact with it. Because a 50 percent chance of developing severe pain from degen-
this is a slow process, a child’s hip goes from being a nor- erative arthritis by their early twenties. Seating and nurs-
mal or reduced hip to a subluxated hip, and at the point of ing care are also more diYcult. For children who are walk-
severe subluxation the ball moves completely away from ing, the pain from arthritis often signiWcantly limits their
the socket. It is then dislocated. ability to walk.
All children with cerebral palsy are not at equal risk for
Indications: Spastic hip dislocation is the most com-
developing hip subluxation. Children with hemiplegia
mon and most physically disabling muscle and bone con- have almost no risk of developing it, but those with mod-
dition that children with cerebral palsy develop. The Wrst erate or severe diplegic cerebral palsy have approximately
signs of hip subluxation are an increasing spasticity in the a 20 or 25 percent risk of developing hip subluxation or
legs and the inability to spread the legs. Because hip sub- dislocation. Therefore, this group needs to be closely ob-
luxation cannot be detected by physical examination alone, served. Because these children are walking, hip subluxa-
especially in its early stages, by 2 years of age all children tion or dislocation is especially debilitating for them. As
with cerebral palsy who have tightness in their legs should they become young adults, it frequently limits or dimin-
have an x-ray of their hips. As the child grows or the spas- ishes their ability to walk. Children with quadriplegia are
ticity gets worse, the legs often become tighter; at some at the highest risk of developing hip dislocation, with both
point, it may be diYcult to diaper the child because of the moderately and severely involved children having a 75 or
degree of tightness. As the hip starts migrating out of the 80 percent chance of developing this condition.
joint and becomes more subluxated, this tightness gener-
Hip dislocation in children with cerebral palsy can be
ally increases. avoided by early close monitoring coupled with appropri-
By the time the hip has become dislocated, it is ex- ate treatment for the young child, with the goal of having
tremely tight; often, the dislocated leg appears to be short- normal hips by the time the child becomes a teenager. Al-
ened. Because of the tight contractures, perineal care, dia- most all hip dislocations in children with cerebral palsy are
pering, and wheelchair seating are diYcult, especially if preventable.
both hips are dislocating. During the time in which the
hips are becoming subluxated and dislocated there may be Care and treatment: Care and treatment options
some mild to moderate discomfort for the child, especially for spastic hip subluxation in children with cerebral palsy
during periods of attempting to diaper the child or to are still somewhat variable but are becoming more stan-
bathe him, which is often the Wrst sign parents notice of dardized. The primary treatment is early detection, and the
any problem with the hip. Frequently the child does not standard early detection method involves a physical exam-
392 ♦ dislocation, shoulder
ination and an x-ray of the hips. Every child who is unable have what is called hypotonic hip dislocation may beneWt
to spread his legs to at least 45 degrees on each side when from bracing to allow the development of normal hips, but
the hips and knees are extended needs to have an x-ray. Be- even this is uncertain at this point.
tween the ages of 2 and 8, x-rays need to be taken approxi- The standard measurement of hip subluxation on an
mately every six months to one year. All children with cere- x-ray is the migration index. It deWnes how much of the ball
bral palsy ought to have at least one x-ray of their pelvis of the hip joint has moved out of the socket. Generally chil-
between the ages of 2 and 5 to make certain their hips are dren whose migration index is between 30 and 60 percent
normal. should be considered for adductor muscle-lengthening
Most experts agree that bracing for the prevention of surgery (the adductor muscles are the muscles on the in-
hip subluxation prior to surgery is not helpful. There is a side of the thigh). For higher migration indexes or older
subgroup of children who do not have spasticity, are ex- children, varus osteotomies, or cutting and redirecting the
tremely Xoppy, and develop hip subluxation or disloca- bone, should be considered. These surgical procedures re-
tion. It is possible that this small subgroup of children who liably prevent hip dislocation and are far superior to any-
thing available to treat hips that are dislocated and painful.
Once the hips have become dislocated and painful, the
treatment requires either resection of the hip joint, which
frequently does not alleviate the pain, or implanting a to-
tal hip replacement, which is often diYcult.
The complications of hip dislocation arise in three ar-
eas. Fifty percent of children who develop hip dislocations
develop signiWcant and debilitating pain at some point in
young adulthood. The treatment of this disabling pain is
extremely diYcult and unrewarding. The dislocated hip
becomes contracted, which often makes nursing care, spe-
ciWcally perineal care and diapering, diYcult. Dislocated
and contracted hips often put the body in positions that
make seating diYcult. Although seating diYculties may be
addressed with wheelchair modiWcations, they often con-
tinue to present problems. Some dislocated hips cause the
pelvis to tilt and thus may initiate scoliosis because of the
posture required for sitting. This is a controversial issue:
some professionals believe that a sitting position may
cause scoliosis and others do not believe that it can cause
this condition.
Dislocation, Shoulder
(shoulder subluxation, shoulder instability)
Shoulder dislocation means that the shoulder is coming

out of its joint. The humerus is the bone in the upper arm
that can completely come out of its socket at the shoulder
joint; this is a fairly common occurrence in teenagers and
is frequently associated with athletic injuries. Children
with cerebral palsy who have signiWcant spasticity and have
vigorous physical therapy for mobilization of the shoulder
can suVer a shoulder dislocation as a result of aggressive
therapy. Picking up children who have abnormal muscle
control by their arms can also cause a dislocation, and lift-
30˚ 45˚ ing should be replaced by picking up children by the chest.
Another group of children with cerebral palsy who have
Tight muscles if <45˚ leg spread on each side frequent trouble with shoulder dislocations are those with
disorders of cellular migration ♦ 393
signiWcant athetosis, whose movements involve pulling painful, and these require surgically tightening the muscles
the arm out and back. These movements stretch out the around the shoulder joint. Surgery to reduce a dislocated
shoulder joint capsule, as well as the muscles that hold the shoulder should only be considered if the shoulder is
bone in joint. painful.
Children with cerebral palsy who have shoulder dis-
locations often have speciWc postures that lead to the dis-
locations. One common posture is while holding the Disorders of Cellular Migration
arm overhead during sleep, particularly in children with (schizencephaly, lissencephaly [agyria],
signiWcant athetosis. By removing circumstances under macrogyria, micropolygyria)
which the shoulder dislocates, the joint will frequently
tighten back up again and resolve without further treat- During the Wrst seven months of fetal life, the brain and
ment. The caregiver should consider the possibility of ty- central nervous system undergo both growth of new cells
ing pajama sleeves down to waist belts if the shoulder is and migration of these cells to their correct location. Fail-
dislocating during sleep. During waking hours, it may be ure of these cells to reach their proper location results in
necessary to use straps to hold the arm down by the side, various abnormalities of the brain, which are categorized
especially if athetosis is part of the problem. Keeping the under the term disorders of cellular migration. They can
arm in place may also be accomplished by using lead- cause cerebral palsy.
weighted arm sleeves to keep the arm on a wheelchair tray. The failure of brain cells to migrate correctly can be
If there is suYcient muscle control, working with exercises caused by chromosomal defects, fetal alcohol syndrome,
to strengthen those muscles that pull the arm down to the or fetal hydantoin syndrome (the exposure of the fetus to
side of the body and to the midline are helpful. a medication used to treat epilepsy in the pregnant mother,
Shoulder dislocations are seldom signiWcant long-term called hydantoin or Dilantin). However, most cases have
problems for children with cerebral palsy. Usually the dis- no known cause.
comfort is minor and temporary, and when the activity has There are a number of types of defects in this category,
been eliminated for a period of time the dislocation is re- which can be distinguished on CT scans or MRI of the
solved. It is uncommon for a shoulder to become dislo- brain. One type of migrational disorder is schizencephaly,
cated and stay dislocated, and in those circumstances characterized by clefts within the brain, extending from
where it does remain dislocated the shoulder is not usually the surface of the cortex to the underlying ventricles. The
painful. However, the shoulder should not be left in a dis- region of the brain that has a cleft is usually underdevel-
located position if it can easily be reduced. There are rare oped. This can result in mental retardation and/or cerebral
occasions during which recurrent dislocations become palsy, speciWcally hypotonia (decreased muscle tone—see
Normal, bumpy brain with gyri Smooth brain surface without gyri
394 ♦ dorsal rhizotomy
“Xoppy infant”), hemiparesis (weakness of one side of the child’s physician. You may also want to speak with other
body), or spastic quadriplegia (whereby all four limbs are parents whose children have had rhizotomies, as well as
aVected), and may be accompanied by seizures and micro- physical therapists who have had experience with children
cephaly. with rhizotomies.
Another type of migrational disorder is lissencephaly In fact, a major indication for a dorsal rhizotomy is the
(also called agyria), which literally means smooth brain. parent’s own temperament—parents willing to take risks
The surface of the brain ordinarily has indentations called and try the newest techniques will be much more inclined
gyri, and their absence results from defects that keep the to choose rhizotomy than parents whose approach to life
migrating nerve cells from reaching their proper location. is to choose procedures that have well-deWned outcomes
In about half the patients, lissencephaly is characterized by and risks, in both the short and the long term. There are no
severe mental retardation, marked hypotonia, and micro- data on the long-term outcome of dorsal rhizotomy; the
cephaly. Seizures tend to be diYcult to control. medium-term outcome data are extremely limited; and
Other types of migrational defect include macrogyria, professionals aren’t even certain that there is any beneWt 5
where the indentations on the surface of the brain are very to 8 years after surgery.
coarse and too few, and micropolygyria, where the brain is In general, the major indications for performing dorsal
characterized by an excess of indentations, which are both rhizotomies are on younger children between the ages of 3
too small and too numerous. Macrogyria gives a similar and 7 years who are able to walk but are signiWcantly lim-
clinical picture to lissencephaly, but with cerebral palsy of ited in their walking by spasticity. The relative merits of
the hemiplegic type. The clinical picture in micropolygyria undergoing rhizotomy surgery versus orthopedic surgery
is one of mental retardation and spastic or hypotonic cere- need to be considered, but in these children it is generally
bral palsy. recommended that if the rhizotomy is done, orthopedic
surgery follow in one year to Wne-tune the problems that
the rhizotomy did not address.
Dorsal Rhizotomy The child with severe involvement who is having diY-
(rhizotomy) culty sitting in a wheelchair because of spasticity or pos-
turing is also a candidate for rhizotomy surgery. If the child
Spasticity is a predominant condition in children with is under 10 years of age, the surgery does provide a signiW-
cerebral palsy. There have been many attempts to correct cant decrease in the spasticity. However, if the child’s pos-
spasticity with neurosurgical procedures. A successful pro- turing is due to pain from a dislocated hip or severe sco-
cedure has been developed called selective dorsal rhizo- liosis, the rhizotomy is absolutely not indicated, because it
tomy in which nerves are cut along the spinal cord, but not will in no way diminish the discomfort. These areas of pain
in the spinal cord itself, to reduce this spasticity: “dorsal” and discomfort should be focused on directly by address-
means that the operation is done on the nerves that are ing the painful hip or the scoliosis.
most posterior, or toward the back of the spine; “selective” Children with athetosis should not have a rhizotomy,
means that only some of the nerves are cut; and “rhizo- because the spasticity works as a shock absorber to dimin-
tomy” means cutting of nerves. ish the athetoid movements. Almost always, the athetosis
There are some physicians who believe that rhizotomy will become signiWcantly worse after the rhizotomy has
is a completely experimental procedure and has more com- been done.
plications than beneWts. There are many physicians with
intermediate opinions who say that rhizotomy does have The surger y: The rhizotomy is performed through
promising possibilities but that it should be considered an an incision in the spine where the nerves are identiWed and
operation about which much is not known and, as a con- a stimulator is used on the muscle to attempt to identify
sequence, should be applied with great caution. There is the most abnormal nerves. The abnormal nerves are then
also a group of neurosurgeons whose whole practice con- cut, resulting in an immediate reduction of the child’s spas-
sists of performing rhizotomies and who believe that a rhi- ticity.
zotomy should be done on almost every child with cere- On approximately the third or fourth day after surgery
bral palsy because it provides unending beneWt for the the child can start sitting up and can begin physical ther-
child. Because of the medical community’s tremendous apy. Intensive exercises are usually avoided for the Wrst two
spectrum of opinion, it may be diYcult for parents to reach weeks. Many neurosurgeons recommend that the child
a decision about whether their child should have a rhizo- visit a rehabilitation center for four to eight weeks to con-
tomy or not. tinue intensive therapy, which should be maintained for
As a parent, your Wrst step should be to talk to your approximately a year.
double hemiplegia / drooling ♦ 395
BeneWts and risks: There are many beneWts from a common problem in younger children with cerebral palsy,
rhizotomy, but they are not very predictable. The most it may improve as a child grows. Drooling causes the face
predictable beneWt is reducing the spasticity. In the child to be frequently wet, and often results in wet clothing as
who has been appropriately selected, this should improve well. Many parents use colorful bandanas or bibs around
the gait pattern by loosening the muscle tone in the legs. the neck to keep clothing dry, and then change these
Change in arm function is reported but not predictable. throughout the day as they become wet.
This procedure does not often have complications, but Although bibs keep the child’s clothes dry, they do not
when they occur, they may be very severe. The short-term protect the face and chin from getting wet. Wetness can
complications can include infection, and the incision can cause chapped facial skin, especially in cold weather. As the
be quite diYcult to close because of the cerebrospinal Xuid child gets older and goes to school, drooling often be-
that continues to leak from the spine. Infections can be comes a barrier to social interaction with other children.
treated with repeated closures and antibiotics. Paralysis of
Treatment: The Wrst level of treatment is behavioral.
the bladder and bowel incontinence can occur, but these
Some children can be taught to swallow their saliva more
are quite rare.
often or to wipe their mouth with a tissue when they be-
Severe weakness, which is diYcult to deWne in children
gin to drool.
with CP, is always seen after surgery, but is due in part to
The next level of treatment should be directed at the
the fact that the muscles are no longer spastic and their
child’s sitting posture. The child should be in a well-
underlying weakness is brought out. For awhile, the child
supported seat so that his head is not drooping forward. If
may be Xoppy throughout his whole body and may have
his head is tilted back, he will drool less. Attention to good
diYculty sitting up, looking rather like a limp rag doll. The
oral hygiene and correcting severely malaligned teeth,
greatest long-term complications are recurrence of the
which may prevent the mouth from closing comfortably,
spasticity and some numbness, which is often present in
is important. Elimination of very large tonsils and ade-
the feet but may be diYcult to deWne in a child with cere-
noids, which may be blocking the child from swallowing
bral palsy. Other side eVects reported following a rhizo-
his secretions, is occasionally necessary.
tomy are beneWcial and include decreased drooling and a
Some medications that cause the child to become
decrease in the “startle” reaction.
drowsy, especially seizure medications, may make drool-
The development of kyphosis, lordosis, or scoliosis af-
ing worse, and these medications should possibly be dis-
ter rhizotomy surgery has not been well deWned, but it has
continued if there has been a signiWcant increase in drool-
occurred. It is still not certain whether this operation in-
ing. Biofeedback mechanisms in which the saliva triggers a
creases the incidence or whether it is the normal incidence
switch, causing some unpleasant eVect for the child, such
of children with cerebral palsy. Some children have also
as turning oV his television, can be used to help control
been reported to develop rapid hip dislocation after dorsal
drooling. Studies with biofeedback, however, suggest that
rhizotomy.
it only works when the biofeedback mechanism is in place
and does not have any carryover eVect.
Double Hemiplegia Medications are often the next step. A variety of med-
ications called anticholinergics have been used to success-
The term double hemiplegia is used to describe children fully reduce drooling. These include glycopyrrolate (Ro-
who have a weakness in all four limbs, with more involve- binul®), atropine (Saltropin®), benztropine (Cogentin®),
ment on one side of the body than the other. It is also ap- hyoscyamine (Levsin®), and the scopolamine patch (Trans-
plied to children who have more arm involvement than leg dermScop®). They have similar potential side eVects, in-
involvement. The use of this term varies; it can be confus- cluding constipation, urinary retention, behavioral changes,
ing. In general, double hemiplegia as a term for a pattern and facial Xushing. Glycopyrrolate appears to have the
of involvement should be avoided, and more speciWc terms lowest frequency of behavioral eVects. Recent studies of
such as quadriplegia, diplegia, or hemiplegia should be botulinum toxin (Botox) injected directly into the salivary
used. glands have shown this to be eVective as well, for up to 24
weeks after injection. Only minor side eVects were seen,
such as temporary complaints about swallowing, but the
Drooling
injection is done under general anesthesia, which has risks
(sialorrhea) of its own.
Surgery may be indicated for those children who con-
Drooling, or sialorrhea, is a result of the lack of coordina-
tinue to have signiWcant problems after the above attempts
tion of the oral, facial, and neck muscles. An extremely
396 ♦ due process hearing / dysphagia
to control drooling have been exhausted. Most of the involve the cognitive inability to recognize letters, diY-
surgical procedures to control drooling tie oV some of the culty in seeing the letters because of visual problems, or
salivary gland ducts or reroute the drainage ducts from diYculty with processing visual information, such as the
the glands to the back of the throat or cut the nerve of the orientation of the letters.
glands. These minor surgeries are usually done by ear, Dyslexia is relatively common in children with cerebral
nose, and throat surgeons or by oral surgeons. palsy who are otherwise cognitively normal. This may in-
The major complication of the surgery is that in some volve some diYculty with information processing in the
children its beneWts are only temporary, and the child will brain or may be related to motor coordination problems
begin to drool again. In rare instances, the child’s mouth with their eyes. For many children there may be some
becomes too dry, which is uncomfortable, and can also combination of both. It is important that this disability be
lead to dental caries. recognized by the educational system, which can usually
structure an educational program to accommodate and/or
remediate the diYculties in learning.
Due Process Hearing
A due process hearing is a legal procedure established by Dysmetria
Public Law 94-142 to allow the resolution of disputes aris-
ing between parents and their “special needs” children, on Dysmetria is poor coordination of the hands. The inability
one side, and the educational system, on the other. The law to follow a line or to write smoothly is a characteristic of
allows for a hearing before an impartial person to review dysmetria; indeed, a child Wrst notices it when he is unable
the identiWcation, evaluation, placement, and services to stay within the lines when he is coloring. The condition
given the disabled child. may improve into late childhood or early adolescence, es-
pecially when aided by occupational therapy for Wne mo-
tor control.
Dysarthria
Dysarthria is a term used for people who have diYculty Dysphagia
with their speech, speciWcally pronouncing (articulating)
words. This condition is especially common in children Dysphagia is diYculty feeding oneself. Just as a person
with athetosis. Sometimes spasticity also aVects the vocal with cerebral palsy may have abnormal posturing of the
cords and causes dysarthria, and there is a dystonic type of head and upper body and motor disturbances of the face,
dysarthria as well. Many adults who have dysarthria Wnd lips, and tongue, so, too, can she have abnormal mobility
this the most disabling impairment because it makes com- of the throat muscles that can impair her ability to eat. Dys-
munication so diYcult. phagia is more often seen in people who also have other
Because speaking is such an integral part of our relating problems with face and tongue control, including speech
to others, any speech problem often makes relating to oth- problems and drooling, and in those who have severe
ers more diYcult. People with dysarthria often Wnd that mental retardation.
others presume they are retarded because their speech can- People with dysphagia may have chronic respiratory
not be understood. It is important to teach them a will- infections, such as recurrent pneumonias, wheezing, or re-
ingness to confront this assumption and to explain to oth- peated bouts of upper respiratory infections (sometimes
ers that their speech diYculty does not mean that they are called bronchitis). Others may show signs of coughing and
retarded or that they cannot understand. All eVorts should choking when eating, especially when drinking liquids, be-
be made to teach the child to communicate as eVectively as cause liquids are more diYcult to swallow than pureed
possible; for many children this may mean using an aug- foods or thickened liquids.
mentative communication device, such as a speech synthe- Addressing the problem of dysphagia for the child
sizer, or using writing, if their hand function is adequate. with cerebral palsy involves identifying the texture of food
Treatment involves speech therapy to assist in learning which can best be handled, the best position for feeding,
better articulation. Patients with dystonia may have the and any adaptive equipment needed to promote safe feed-
small muscles in the larynx injected with botulinum toxin. ing. This may involve thickening liquids or avoiding cer-
tain textures of food, which may be diYcult to handle.
DiVerent eating strategies should be evaluated and pre-
Dyslexia scribed by a speech therapist. In some children with severe
dysphagia it may be necessary to stop oral feeding and in-
Dyslexia (a speciWc learning disability of reading) is a con-
troduce a gastrostomy tube.
dition that interferes with a person’s ability to read. It may
e a r ly i n t e r v e n t i o n / e n d o s c o p y ♦ 397
Early Inter vention phrase immediately after he hears it, or he may repeat a
speciWc phrase days, weeks, or sometimes months after he
(infant stimulation)
hears it. Echolalia usually means repetition of small phrases
Early intervention means providing therapy for a child or words.
who is not reaching her normal growth and developmen- This speech pattern is relatively common in children
tal milestones. Children qualify for such services by demon- with mental retardation who have good speaking ability.
strating greater than a 25% delay in one or more areas of This can lead to signiWcant frustration in parents, family
development. Early intervention programs vary in the members, and other caregivers. Treatment involves a be-
types of services they provide and can include helping par- havioral approach to extinguish the unwanted behavior.
ents care for their child’s speciWc developmental needs,
such as diYculty using utensils, feeding problems, or diY-
culty walking. Therapists work with parents to show them
Endoscopy
how to help their child develop her speech capabilities, or Endoscopy is the introduction of a thin, lighted tube into
how to provide extra support to a child who is struggling an area of the body in order to inspect it and sometimes
with a speciWc disability. Early intervention is usually pro- to collect samples. For example, endoscopy may be per-
vided by a team that includes physical, occupational, and formed by a gastroenterologist interested in inspecting
speech therapists; nurses; and physicians experienced in various parts of the gastrointestinal system, either from
dealing with children with developmental delays. above (called an upper endoscopy) by introducing a tube
Frequently, children who have cerebral palsy have mo- through the mouth, or from below (called a lower en-
tor diYculties that preclude their developing normal doscopy) by introducing a tube through the anal sphinc-
movements as they start growing. A 9-month-old child ter. An upper endoscopy may consist of esophagoscopy
with cerebral palsy who is still completely immobile con- (inspection of the esophagus), gastroscopy (inspection of
tinues to be very dependent upon others to stimulate him. the stomach), and duodenoscopy (inspection of the duo-
Infant stimulation therapy is directed at providing the in- denum, which is the Wrst part of the small intestine).
creasingly complex stimulation that the developing child Lower endoscopy may consist of anoscopy (inspection
needs. It often involves play therapy, providing the child of the anus), sigmoidoscopy (inspection of the sigmoid
with diVerent sitting positions, movement, and visual colon, which is the lowest part of the colon just before it
stimulation. Another important component of infant exits at the anus), or colonoscopy (inspection of the large
stimulation therapy is working with the caregivers or par- intestine or colon).
ents of a child with CP and encouraging them to continue During these procedures the physician is able to in-
the stimulation process as part of ongoing care. spect the designated inside part of the body and record
the Wndings on videotape or with photographs. Biopsies of
BeneWts and risks: The beneWt of early intervention
the inspected tissue may be taken or samples for culture
is the improved stimulation of the child by a team that con-
obtained. In addition, procedures such as the removal of a
tinues to evaluate the child’s progress. This includes close
polyp or growth can be done via lower endoscopy, and
monitoring of the child’s feeding, physical, language and
placement of a percutaneous gastrostomy tube can be
cognitive skills. A risk of early intervention can be seen in
done via upper endoscopy, thus avoiding surgery.
children who are medically fragile and are unable to toler-
ate the signiWcant degree of stimulation which early inter- Indications: The most common indications for up-
vention may provide. Early intervention needs to be proper GI endoscopy are concern about an ulcer or stomach
vided by a team approach with case management available, acid reXuxing into the esophagus. Infections may also oc-
so parents are not overwhelmed by many diVerent profes- cur, which can cause pain in the abdomen. The common
sionals, some of whom may be giving diVerent messages indications for lower endoscopy are to evaluate blood in
to the parents. the stool.
Early intervention usually continues until the child is 3
years of age, at which time she moves into a more formal BeneWts and risks: The beneWt of endoscopy is that
educational setting. it can be performed with heavy sedation for most children.
If major internal procedures are to be performed, such as
removal of a polyp or placement of a gastrostomy tube,
Echolalia general anesthesia is required. The risks, however, are much
less than would be required for open surgery, and the re-
Echolalia is a technical term describing a person who re-
covery period is shorter.
peats exactly what he hears. He may repeat a word or
398 ♦ esophagitis
Maintenance and care: After the procedure the tis is often seen in the person with cerebral palsy because of
child needs to recover from the sedation; it is often several gastroesophageal reXux, the process by which stomach
hours before he is comfortable enough to start feeding. acid comes up into the esophagus.
Since the esophagus cannot tolerate stomach acid, it is
very easily damaged, and the result is heartburn, pain, and
Esophagitis bleeding. A child with longstanding esophagitis may simply
refuse to eat, even if he has previously been a good eater; he
Esophagitis means inXammation of the esophagus, the
shows signs of pain and weight loss, even though the site of
tube that leads from the mouth to the stomach. Esophagi-
Tube of endoscope
Esophagus
Stomach
Duodenum
Jejunum
Transverse colon
Descending colon
Ascending colon
Ileum
Sigmoid colon
Rectum
Anus
eye–hand coordination / fsp ♦ 399
alignment. Normal motor patterns are used as the ideal

pattern and alignment. By repeating the technique over
and over, the idea of facilitation is to create a new more
“typical” motor pattern. The patient’s active participation
Stomach acid is required. The goal of facilitation is to provide the least
Inflamed
esophagus reflux amount of hands-on input to achieve the skill.
Failure to Thrive
Stomach (FTT)
A child who is not gaining enough weight is said to be fail-

ing to thrive. By deWnition, a child whose weight is below
the Wfth percentile for age and gender, or a child whose
weight crosses more than two major percentile groups
(such as from above the Wftieth to below the 25th per-
centile) over a relatively short period of time, is recognized
by physicians as having trouble growing appropriately. A
the pain may not be clear. While acute esophagitis can be cause of failure to thrive can be almost any illness or con-
treated with medications to ease the inXammation and dition of childhood, although it often reXects insuYcient
pain, the underlying cause such as GE reXux needs to be caloric intake. A child with cerebral palsy often does not
addressed in order to relieve the problem for the long term. grow adequately because he is unable to take in enough
calories, mainly due to some of the swallowing problems
that many children with CP have.
Eye–Hand Coordination To treat failure to thrive, the Wrst requirement is to
identify the cause. In the child with cerebral palsy the in-
Many activities, especially Wne motor activities, require be-
vestigator needs to compile a careful history of how much
ing able to get a visual Wx on an object and then bring one’s
the child is eating. Often this is done with a diary in which
hand to that object. This is known as eye–hand coordina-
the parents record all the foods eaten by the child over sev-
tion. Feeding oneself, for example, requires being able to
eral days. A nutritionist can calculate the average number
Wx visually on the food and then bring the spoon to it and
of calories per day, as well as speciWc minerals and vitamins
into one’s mouth. Some children with cerebral palsy have
that the child consumed. In addition, for many children
diYculty coordinating daily tasks in that they can only per-
with CP, a feeding evaluation may be helpful in identifying
form one of the two required actions: either they can Wx vi-
speciWc textures or liquids that the child may be having
sually or they can attempt the motor coordination activity
trouble swallowing. These may be causing the child to gag,
of bringing their hand to an object. They cannot do both.
or the child may actually be aspirating into his lungs, caus-
The lack of eye–hand coordination makes some activities,
ing respiratory problems.
such as feeding oneself, brushing one’s teeth or operating
Treatment modalities may include the use of high-
a computer, very diYcult.
calorie foods (for example, whole milk, butter, or oil),
The treatment for this lack of coordination requires re-
commercial nutritional supplements; the elimination of
peated training, especially in Wnding the speciWc movements
liquids or certain textures that may be diYcult for the child
or techniques that allow the child to reach for an object while
to swallow; or in some cases the placement of a feeding
looking at it. Optimal seating is very helpful, especially sys-
tube, either to supplement what the child can eat by mouth
tems that provide maximum trunk and head control.
or to take over feeding the child who can no longer be
safely fed by mouth.
Facilitation
By deWnition, children with cerebral palsy have diYculty Familial Spastic Paraplegia (FSP)
with their motor skills. Facilitation is a hands-on approach (hereditary spastic paraplegia [HSP])
to maximizing motor skills in people with abnormal
muscle control. Generally a therapist or caregiver provides Although this is not a type of cerebral palsy, children with
hands-on guidance to promote muscle activation during familial spastic paraplegia resemble children with spastic
a motor activity (such as sitting up from bed) in the best diplegic cerebral palsy, in that they have spasticity and in-
400 ♦ femoral anteversion
creased reXexes in their legs. They often are delayed in When the child starts walking, the anteversion causes
walking. The way they walk looks much like the way chil- her to walk with her knees and toes pointed at each other.
dren with diplegia walk. The spectrum of disability is wide, If the condition is severe, it obviously makes walking diY-
from exceedingly mild to severely involved—to the point cult. However, there are no braces that can correct this
where some young adults may need a wheelchair. Genes position. Short of surgical correction, continuing with
that are responsible for several forms of FSP have been physical therapy gait training, along with the child’s devel-
identiWed, and more will likely be identiWed in the future. opment of motor control, is the only method that oVers a
FSP is a descriptive diagnosis of a genetically diverse group good chance of improvement.
of disorders. While patients within this group experience If anteversion is a major detriment to the child’s walk-
similar symptoms, the genetic causes are diVerent. Re- ing, is preventing her from improving her gait, or at
searchers have reported autosomal dominant, autosomal adolescence is continuing to be a signiWcant cosmetic or
recessive, and X-linked recessive inheritance patterns for functional problem, it should be surgically corrected. At
this disorder. Genetic counseling is strongly recommended whatever age surgery is performed, the correction will be
for families with this condition. maintained. There are three methods of correcting femoral
The treatment program is the same as that for spastic anteversion, and the operative corrections that are used
diplegic cerebral palsy, although children with spastic vary depending primarily on the surgeon’s choice.
paraplegia tend to deteriorate more quickly. For this rea-
The surger y: The procedure performed at the hip
son, they may not make progress as well as the average
child with diplegia. There are some children, however, end of the femur is the most signiWcant of the three with
who experience almost no deterioration over time. Spastic respect to surgical time and blood loss. The bone is cut just
paraplegia is more common than many people realize; below the hip joint and a plate is utilized to hold the os-
many children who are thought to have standard diplegic teotomy in place. This procedure allows direct visualiza-
cerebral palsy in fact have this inherited condition, but tion of the bone and the most accurate correction with the
since they are the only one in the family, familial spastic
paraplegia is not suspected. It goes without saying that fa-
milial spastic paraplegia should be strongly considered as a
diagnosis if two children in the same family have spastic
diplegia or if a parent with spastic diplegia has a child with
similar symptoms.
Femoral Anteversion
(in-toeing gait) Twisted
femur bones
Femoral anteversion is a term that describes a twisted fe-
mur, or thighbone, with the knee turned in relative to the
hip joint. This common twist is present at the time of
birth; under the inXuence of normal muscle pull and walk-
ing in early years of childhood growth, it slowly corrects
itself. Children with spastic muscles, however, do not de-
velop normal muscle pull and as a consequence this rota-
tional malalignment is not corrected with growth.
An early sign of this condition is the child who prefers
to “W-sit”—that is, to sit with her legs in the W-position.
There is no evidence that W-sitting causes femoral ante-
version, nor that W-sitting causes any harm or prevents a
naturally occurring correction of the anteversion. As a con-
sequence, there is no reason to prevent the child from W-
sitting if that is a comfortable sitting posture for her. In
times past, W-sitting was blamed for causing in-toeing and
dislocated hips. Now it is generally understood to be just
another symptom of increased femoral anteversion and
not its cause. Sitting “W” style
femoral osteotomy ♦ 401
fewest possible complications, but it involves the place- Femoral Osteotomy

ment of a plate that occasionally needs to be removed after
(varus osteotomy, varus derotational osteotomy,
healing. Usually casts are not necessary, and the child can
hip osteotomy)
immediately start walking after this correction.
The second method of correcting femoral anteversion Femoral osteotomy is a surgical procedure that is often
is by operating on the middle of the femur with a surgical performed on children with cerebral palsy. The femur (the
saw that cuts the femoral bone from the inside out. A rod thighbone) is cut (most commonly just below the hip
is placed to hold the bone in the corrected position. With joint) to make a change in the bone that will correct either
this surgical procedure, the exact amount of correction of two categories of problems: hip dislocation (subluxa-
and the ability to hold the correction are more diYcult, so tion) and diYculties with walking.
it is primarily indicated for adults and is not widely used
for children. The surger y: The osteotomies that are done for hip
The third procedure is widely used for children and subluxation or dislocation involve cutting and reposition-
involves cutting the femur just above the knee through ing the femur in order to place the ball of the femur more
a small incision, oftentimes only the size of a small stab directly into the socket. Often the leg is slightly shortened,
wound. Multiple drill holes are made and the femur is which in turn makes the hamstring muscles feel looser. The
cracked and rotated into the appropriate position. Casts procedure is usually combined with muscle lengthenings,
are applied up to or over the hip joints and are kept in place such as adductor and iliopsoas lengthening in the groin.
for six weeks. This is a very small operative procedure that The osteotomy performed to improve walking in-
does not take very long; however, the child is immobilized volves turning the leg so that it points in the correct direc-
in casts and is unable to walk for at least six weeks. The cor- tion, which is especially helpful for children who are walk-
rection obtained is a bit unpredictable and occasionally in- ing with their legs severely turned in. Some older children
suYcient; at other times there is correction. Because the may have a hip Xexion contracture, which causes them to
cut is also made in the area of the growth plate, occasion- walk very severely bent forward at the hips. This condition
ally the growth on one side of the knee or the other may may also be straightened by a similar osteotomy and
stop, and an angular deformity may develop at the knee muscle lengthenings.
joint. An osteotomy can be done in many diVerent ways, but
almost uniformly all variations involve implanting a plate
What to expect: No matter which surgical option is to hold and Wx the osteotomy. One of the most commonly
chosen, the postoperative care and management usually used plates is called a blade plate, which is placed into the
requires intensive physical therapy to try to learn a new gait bone and Wxed with screws. Another version, a screw and
pattern because, if the correction has been done properly, side plate, comes in a number of diVerent styles: one is
the knees now often point out slightly. This places the called a Richard’s screw and another is called a Coventry
muscles in diVerent positions. Intensive therapy can help plate. Each of these devices has its advocates, and the
the child learn this new gait pattern, which is especially im- choice largely depends on the surgeon’s preference. The
portant if casts have been used and the child has been un- operation is usually performed with the patient lying on
able to walk for several months. his back under general anesthesia and can often be done on
Femur bones cut,

twisted outward
and reattached
Femoral osteotomy
402 ♦ flat feet
both sides without any blood transfusions. The incision is who had this surgical procedure at age 3 or 4 may have a re-
made along the outside of the hip joint. currence of the hip subluxation and occasionally needs to
have the femoral osteotomy repeated.
After-surger y care: After a hip osteotomy, the child
is usually placed in a hip spica cast for four to six weeks. If
the cast remains in place longer than this, there is a great Flat Feet
risk of developing soft bones and repeated fractures once
(planovalgus foot deformity)
the cast is removed. For children who are walking, casting
for this length of time also represents a signiWcant setback, Someone with a Xat (or planovalgus) foot has an ankle that
since it is quite a while before they can get up and walk rolls in. At its worst the foot turns so much that the sole is
again. Generally, with modern devices such as AO blade not in contact with the Xoor but is pointed laterally, or to
plates, no cast is necessary, and children who were walking the outside. When a child with Xat feet walks, her weight
before the operation are able to get up after recovering bears down on the inside of the foot and on the great toe.
from surgery. Undergoing this procedure without any This severe condition is unusual, but a mild to moderate
casting is very helpful for families, since after-care is so Xatfoot deformity is extremely common in children with
much easier and rehabilitation is much quicker. cerebral palsy, as well as in the general population. A mild
After an osteotomy, a child’s hips will appear much Xat foot has no arch and is very wide. A moderate Xat foot
wider, generally because he started with abnormally nar- is clearly turned out but not to the point where the child
row hips. In reality, however, they are only slightly wider walks on the anklebone.
than normal hips. The wide hips are especially good for The course of Xat feet for a child 2 or 3 years old is diY-
children who are sitters, providing them with a wider base. cult to predict. Normal children who have Xat feet at this
Also, when the child is lying down, both hips should now early age almost never have pain as they get older, and
lie Xat, and the knees and feet should point slightly out in there are no braces or shoes that have any long-term im-
a way that mirrors a normal child’s sleeping position. Get- pact upon this condition. For children with cerebral palsy,
ting the rotations correct is diYcult because it is important the natural progression of Xat feet is not as clearly deWned,
to make sure that the child can sit with his legs pointing and there is no evidence that the use of braces or shoe in-
straight down. serts makes any ultimate diVerence in the development of
the feet.
What to expect: Possible complications depend
Many children who have mild and moderate Xat feet
upon the plate that is used. When the plates are properly
early in life develop better motor control as they get older,
placed, the possibility of the realigned bones coming apart
and their feet end up looking normal. In some cases the
is extremely rare. However, it is possible that the child may
feet reverse and develop the opposite deformity, an arch
twist his leg and break the bone just below the screws, even
that is too high. Many young children with cerebral palsy
months or years after the osteotomy has healed. Older-
have moderate Xat feet that don’t ever change, function
style plates, such as the Coventry plate, are often quite
well, are pain free, and do not need any treatment, espe-
prominent and not very strong. The plate may break, es-
cially surgical treatment.
pecially if there was not suYcient casting time. This plate
requires a cast. The risk of nonunion or loss of Wxation Indications: For other children, the Xat feet get
with older types of screws and side plates is increased. The worse as they get older; as they get heavier and continue
AO blade plate and the Richard’s type of screw are both walking, the foot seems to break down more. Bracing
signiWcantly stronger and seldom break. should be tried Wrst, using arch supports in the shoes or
There may be other changes over the long term (mean- AFOs. If the braces cause foot pain, it is much better to
ing from one to Wve years). The wide hips, which the child discontinue them and allow the child to wear shoes that
initially has after the femoral osteotomy, gradually become aren’t painful.
less wide with growth. If the child has a signiWcant amount If the condition is so severe that walking becomes ex-
of growth remaining, hip width relative to the width of the tremely diYcult, and bracing is not tolerated, then surgical
trunk decreases signiWcantly. If the child is nearly Wnished correction may be necessary if the child is to continue
growing, however, hip width does not decrease. In addi- walking. If surgery is indicated for the child under age 9 or
tion, the inward twist of the bone which may have been 10 years, the subtalar (or Grice) fusion, which involves fus-
present will not recur in the nearly grown child. The ing the calcaneus and talus bones at the back of the foot, is
straightening at the hip may return, however, if the child classically the operation of choice. More recently, a cal-
has a signiWcant amount of growth remaining. The child caneal lengthening (lengthening the heel bone) has shown
floppy infant / fusion, foot ♦ 403
promising results in younger patients without the need to throughout their entire lives. Stimulating the child to de-
fuse joints. The older adolescent child with a more long- velop and strengthen her muscles is an important means of
standing Xatfoot is often treated by a triple arthrodesis, treatment. Also, it is necessary to provide excellent sup-
which involves fusing three joints in the back of the foot. ported seating postures to allow her to focus on control-
Triple arthrodesis provides a more reliable lifelong correc- ling other parts of her body. For example, caregivers should
tion of the foot. However, it does decrease the mobility of provide good trunk and body support so the child with
the foot below the ankle joint and may lead to long-term hypotonia can focus on head and hand control.
ankle arthritis.
FM System
Floppy Infant
FM system is one device in a wide array of “assistive” de-
(hypotonic infant) vices to help children with hearing loss connect with their
sound environment. The FM system consists of head-
An infant sometimes seems limp or immobile, like a rag
phones, or on occasion a direct link to a hearing aid, worn
doll. Such children are often described as Xoppy infants.
by a child with hearing loss connected via a radio (FM) sig-
The three main features associated with hypotonia are un-
nal to a microphone worn by the speaker. These are typi-
usual postures, diminished resistance of the joints to pas-
cally used in the classroom and ensure that the child is re-
sive movement, and increase in the range of movement of
ceiving a consistent acoustic signal. This eliminates the
the joints. In the newborn period, such an infant will usu-
vagaries of poor classroom acoustics and the problem of
ally display unusual postures and little active movement.
background noise. Because of this, FM systems have been
The older infant is delayed in the achievement of motor
proven to improve the school performance of all children,
milestones.
not just those with hearing loss, and have been used espe-
Hypotonia may be associated with a wide variety of
cially for children with attention deWcit disorder to help
conditions. It may indicate a neuromuscular disorder; it
them focus on what is being said by the teacher.
may occur in children who are mentally retarded; or it may
be the manifestation of a connective tissue disorder, a
metabolic disorder, or the early phase of cerebral palsy. It Fusion, Foot
may also occur as an isolated symptom in an otherwise
normal child, with the symptom eventually disappearing. (subtalar fusion, Grice fusion, triple arthrodesis,
The cause of hypotonia can be found anywhere from planovalgus foot deformity, severe equino varus
the brain, to the spinal cord, to the peripheral nerves, to foot deformity)
the muscle, to the connective tissues of the extremities. A fusion is an operation that causes two bones to grow to-
Thus, the list of conditions that can cause hypotonia is a gether to form one bone. There are four bones in the back
long one. In addition to conditions aVecting speciWc parts part of the foot which commonly have fusions performed
of the nervous system, hypotonia can be seen in metabolic, on them for children with cerebral palsy, predominantly to
nutritional, or endocrine conditions, such as rickets, hy- improve position of the foot. These individual fusions can
pothyroidism, or renal tubular acidosis. It can be found in be somewhat confusing, but it is important to understand
genetic disorders such as Prader-Willi syndrome (where the exact reason for performing them as well as what mo-
hypotonia is associated with failure to thrive early in life) tion will be lost after surgery.
or Down syndrome. As already mentioned, it can be a part
of nonspeciWc mental retardation, of hypotonic cerebral Indications: If a child with spasticity has developed
palsy, or of metabolic disorders such as aminoaciduria or severe Xat feet or the opposite deformity (a severe foot de-
organic aciduria. formity with a high arch and the foot pointed down), then
Hypotonia can also reXect a basic weakness in the three joints in the foot are improperly aligned. If the child
muscle itself, such as is seen in various myopathies or mus- with severe Xat feet is relatively young, the primary prob-
cular dystrophies. Lastly, it can be a normal transient con- lem is between two of these joints. Initially this condition
dition known as benign congenital hypotonia (or essential can be braced with a variety of diVerent in-shoe braces such
hypotonia), which eventually disappears. These children as arch supports or a full-length ankle-foot orthosis (AFO),
have no underlying muscle weakness, intellectual retarda- especially for young children. However, if the child is un-
tion, or associated disease. able to tolerate the brace or the deformity becomes so se-
Although many children outgrow hypotonia, some vere that he has a great deal of diYculty walking in spite of
children with cerebral palsy continue to be very Xoppy the brace, a foot fusion is usually necessary.
404 ♦ g a i t a n a ly s i s
3
Heelbone fused with talus bone Three joints fused
The surger y: The most common surgical procedure probably less than it would be from walking on the de-
for the 3- to 9-year-old is a subtalar or Grice fusion. This informed foot for many years.
volves placing a bone block between the talus bone and the Although there is the risk of eventual arthritis, there are
heelbone in the corrected position. Often a screw is placed also substantial beneWts in that the foot will be much more
across the heelbone and talus to hold the position. This stable and be able to support the weight during standing.
procedure results in a nicely corrected foot, but in approx- These fusions are performed because the feet have a ten-
imately 25 percent of patients, the fusion is eventually re- dency to collapse, and the real beneWt of a fusion is that it
sorbed and the deformity may recur. In the adolescent is durable and will not give way over a person’s lifetime.
with the same severely deformed foot, the triple arthrode-
sis allows a much better realignment of the foot and pro-
vides for permanent correction. The triple arthrodesis in- Gait Analysis
volves fusion of the three foot joints, so that the foot is no (three-dimensional gait analysis, foot pressure
longer able to move in either the Xatfooted or the high- measurements, gait videotaping, dynamic EMG
arched position. However, it is not prevented from mov- analysis)
ing up and down. The triple arthrodesis is often Wxed with
screws and staples to hold its position until bone healing Gait has been analyzed visually by physical therapists and
occurs. With a severely deformed Xat foot it is diYcult to orthopedic doctors ever since patients with cerebral palsy
get an excellent cosmetic correction, although a fairly have been treated. Visual gait analysis involves having the
normal-looking foot is usually the result for almost all patient walk suYciently undressed so the whole body can
teenagers or young adults. be carefully observed. An experienced physician identiWes
the major areas of concern, such as the alignment of the
After-surger y care: Usually short leg casting, from legs, if the knees are bending, or if the child is toe walking.
the toes to the knee, is applied for 6 to 12 weeks. For some There is, however, no permanent record and no numbers
or all of this time the child may not be able to step on his by which measurements can be made and recorded. For
foot. This is determined at the time of surgery by the this reason, mechanical gait analysis was developed.
speciWc surgical procedure performed, strength of the The simplest way to record gait analysis is by using a
bones, and the surgeon’s experience. After the cast is re- video camera to Wlm what is seen so it can be viewed in
moved, it usually takes approximately 4 weeks to get com- slow motion, forward and backward. The videotape itself
fortable walking on the foot. can be very helpful for assessing very subtle problems, such
as the symmetry of steps, how much knee bend is present,
BeneWts and risks: There is an approximately 25
and how the feet are used for standing. The next level of so-
percent risk of needing to have the subtalar fusion repeated
phistication involves using markers on the body, which al-
as an adult because of resorption of the fusion. The pri-
lows the physician to measure the angles of joint motion as
mary complication from the triple arthrodesis is that there
the child walks. Very simple analyses are two-dimensional;
may be inadequate correction at the time of the surgery or
only one camera is used. Markers are placed on the joints,
that one of the joint fusions does not heal. Sometimes the
and the angles between joints are calculated mathemati-
metal is also prominent and needs to be removed. Over
cally. For the child with cerebral palsy, this assessment is
the long term, the fused joint may cause earlier arthritis in
too simple and not very useful because of the large amount
the ankle; however, the chance of developing arthritis is
of error in the assessment.
g a i t a n a ly s i s ♦ 405
The more common and most sophisticated analysis is by means of small pads placed over the muscles. This con-
three-dimensional. ReXecting markers are attached at cept works on the same principle as a cardiogram for the
multiple points on the body, and a series of cameras are uti- heart. A third component of the evaluation is an instru-
lized to record the person’s movement patterns. This anal- ment in the Xoor which the child stands and walks over to
ysis deWnes all the joints in three-dimensional space and al- give the exact amount of force placed on each leg. An ad-
lows assessment of all joint motions in rotation, side, and ditional device that helps deWne speciWcally how the foot
front planes. In addition, recorders with radio transmis- surface is taking pressure may be inserted into the shoe, or
sion are frequently used to record the activity of the muscle the measurement of foot pressure is made by having the
406 ♦ gastritis
child walk barefoot on a walkway. For some children, the provide some information but are not comprehensive, and
amount of oxygen they use for walking is also measured by there are many variations in laboratories that provide these
having them wear a mask while they walk. services, so do your homework before enlisting a particu-
The full three-dimensional gait analysis with EMG lar lab’s services.
recording, force plate recording, and foot pressure record-
What to expect: Gait analyses are often repeated
ing develops an enormous amount of information which
following major surgical procedures, after the child’s full
is quantiWable and permanently recorded. The use of these
rehabilitation has occurred. This usually means that ap-
data is important in determining speciWc orthotic pre-
proximately one year after the surgical procedure has been
scriptions and decisions about surgical corrections. The in-
performed, the gait analysis is repeated to measure how
formation does not in itself, however, give immediate an-
much correction was obtained and also to set parameters
swers but requires the interpretation of an experienced
for continuing to monitor the child. After the child has
physician. These analyses can be quite complex and are of-
grown more, often four or Wve years later, and the defor-
ten open to diVerences in interpretation.
mity has recurred, a repeat gait analysis would again be
After the gait analysis is complete, there is a Wnal inter-
performed in anticipation of a new surgical procedure or
pretation, which usually includes an assessment of the pre-
other major change.
dominant abnormalities and some recommendation that
the physician feels would beneWt the child. The presenta-
tion includes a series of stick Wgures that demonstrate the Gastritis
visual appearance of the child’s walking pattern and charts
and graphs that demonstrate muscle function and the (ulcers, Helicobacter pylori)
range of joint motion as components of the gait pattern. Gastritis is inXammation of the lining of the stomach,
Indications: Gait analysis is indicated for a child which can sometimes lead to an ulcer. An ulcer is an ero-
whose physicians and caregivers are considering a major sion of the lining of the stomach or the small intestine. Ul-
treatment decision such as surgery. Full three-dimensional cers can cause abdominal pain and bleeding, which then
gait analysis is often required before surgery, especially if can lead to vomiting of blood or dark “tarry” stools that
the gait problem is complex. However, if the child has a contain blood that has been digested. Although many
relatively simple condition such as an isolated tight ten- thought in the past that gastritis or ulcers were related to
don, often gait analysis does not add any additional infor- increased secretion of stomach acid or emotional upset, we
mation, and simple videotaping with a standard format now know that a large percentage are due to a bacteria
provides most of the needed information. called Helicobacter pylori.
H. pylori infection is best diagnosed by obtaining a
BeneWts and risks: Besides the obvious advantage biopsy during an upper endoscopy. A blood test is avail-
of providing a full and complete analysis of a child’s gait able but must be reviewed by a gastroenterologist, as the
pattern, gait analysis also allows physicians to detect test can be unreliable and lead to false-positive results. This
unknown problems early on. However, the gait analysis blood test can, however, help identify those children that
should be performed in a laboratory and interpreted by a need an upper endoscopy. In adults a special breath test for
physician with experience in treating patients with cerebral urease can be done to diagnose this infection, but this test
palsy. Because some gait analysis laboratories are set up by is not currently accepted as a means of diagnosing H. pylori
people who are extremely experienced in gathering the in- infection in children. We do not know how these bacteria
formation but do not have expertise in interpreting the in- get into the body, but it has been suggested that we can
formation, proper treatment requires Wnding a full-service pass this infection to one another, as we have seen groups
lab with qualiWed physicians. of children that live together in institutions become in-
Gait analysis is also expensive, with the full three- fected. Some populations have these bacteria in their
dimensional gait analysis usually costing a thousand dollars stomach but do not have any symptoms.
or more. The full gait analysis including joint measure- Some other causes of gastritis and/or ulcers are surgery
ments and a physical examination is also time-consuming, and medications. During the immediate postoperative pe-
usually requiring two to four hours. Any gait analysis that riod, there is a surge in secretion of acid, which can cause
is done in a matter of thirty minutes and only costs a frac- inXammation of the stomach. Medications such as steroids,
tion of the amount listed above will by deWnition be much aspirin, or ibuprofen can irritate the lining of the stomach
simpler and less complete. The simpler analyses still do and result in gastritis as well.
gastroesophageal reflux disease / gingivitis ♦ 407
Gastroesophageal ReXux Disease ical problems. For example, a child born to a mother with
diabetes may be born LGA, weighing much more than
(GERD, reXux)
normally expected, and is at risk from a variety of problems
Gastroesophageal reXux is the process by which stomach associated with being LGA (such as hypoglycemia). A
contents come up into the esophagus, causing inXamma- baby born SGA may also reXect speciWc medical problems,
tion. These contents may include acid as well as undigested such as poor nutrition due to placental insuYciency or an
food contents. It is a common problem in young infants infection suVered in utero. Babies born SGA are usually
and is recognized when babies “spit up” following a feed- followed as at risk in early intervention programs, as they
ing. In most infants this problem does not require any have an increased risk for developmental disabilities.
treatment. It gradually subsides as children grow and
usually disappears by the time they are between 12 and 18
months of age when they are up and walking about. Many
Gingivitis
adults experience this problem as “heartburn” after a meal. (gum hypertrophy, plaque)
In a minority of infants, the problem causes symptoms
Enlargement and inXammation of the gums is a common
such as failure to thrive, esophagitis, anemia, and irritabil-
occurrence in children with abnormal muscle control
ity. If the reXux is more severe, the stomach contents may
around the mouth. It may also be increased with the use of
reach the back of the throat and may be aspirated into the
certain medications such as Dilantin. The main cause of
lungs, causing respiratory disease. Treatment includes
this overgrowth is gingivitis, or inXammation of the gums,
modiWcation of the infant’s position (keeping him upright
which is caused in part by lack of routine dental care, such
after feeding and not lying him down for at least 30–60
as brushing and Xossing. In children with spastic cerebral
minutes after a meal), modiWcation of the diet (thickening
palsy, such dental care can be very diYcult because the
formula with rice cereal), medications, or surgery.
child may involuntarily bite down every time something is
In children with CP, GER is very common and usually
introduced into the mouth, such as a toothbrush. The main
does not go away by the time the child reaches 12–18
method of preventing gingivitis is good oral hygiene as
months of age. The treatment is the same as noted above,
well as routine dental cleaning, every three to six months.
primarily a combination of thickening of feedings, the up-
right position after meals, and a variety of medications. If
severe symptoms continue, especially episodes of pneu-
monia or chronic wheezing from aspiration, then surgery
is often required to control the problem. The procedure,
known as a fundoplication, can be done either endoscopi-
cally or via an open procedure (see Chapter 3 for more
details).
Gestational Age Overgrown, inflamed gums
(small, appropriate, and large for gestational age

[SGA, AGA, LGA]) Indications: If the overgrowth becomes large with
frequent bleeding when brushing, then surgical removal of
Gestational age is the number of weeks of the pregnancy, the excess gum tissue is usually indicated. This procedure
calculated from the date of the woman’s last menstrual pe- must be done in the operating room under general anes-
riod. Forty weeks, with a range of 38–42 weeks, is consid- thesia. Often children have to stay in the hospital over-
ered full-term. A child whose birthweight is within what is night in case there is excessive bleeding. The main compli-
deWned as a normal range for that length of pregnancy is cation, however, is recurrence, if diligent cleaning is not
considered appropriate for his or her gestational age maintained.
(AGA). There are growth charts showing the normal ex- Another cause of gum inXammation is plaque, a hard
pected weight for infants of various gestational ages rang- tissue that builds up on the base of the teeth. Plaque can
ing from very small premature babies to children born at cause inXammation and may eventually lead to decay of
full term. Any infant who is either below (small for gesta- the base of the tooth where it is held onto the bone. Good
tional age, or SGA) or above (large for gestational age, or oral hygiene is essential, and frequent dental cleaning is
LGA) the expected weight may be showing signs of med- needed in some individuals to control plaque.
408 ♦ growth charts / hamstring lengthening
Growth Charts Hamstring Lengthening

Growth charts plot the normal growth of a child from (hamstring transfer, knee Xexion contracture,
birth to age 20. Separate charts are available for boys and crouched gait, tight hamstrings, hamstring
girls from birth to age 3 and from ages 2 to 20. These charts contracture)
plot the weight, length (and later height), and head cir- The hamstrings are a large muscle group located on the
cumference of the general population, and show the dis- back side of the thigh. They are composed of two muscle
tribution of values based on a percentile scale from the groups, one on the inside of the thigh, which includes the
third percentile to the ninety-seventh percentile. Thus, a semi-tendinosus, semi-membranous, and gracilis muscles,
child whose weight is at the Wfth percentile is smaller and the lateral hamstring group toward the outside of the
than 95 percent of other children his same age and gender thigh, which includes biceps muscles. These two groups
but is still within the norm, since someone has to be in the have a tendency to become tight and contracted, and are
lowest 5 percent of the population. When a child falls ei- especially problematic for those children who spend most
ther below the Wfth percentile or above the ninety-Wfth or all of their waking hours sitting. The muscles become
percentile for his or her age, he or she is considered out of tighter as the child grows because of decreased muscle
the normal range, and some medical investigation may be growth due to spasticity.
indicated.
These charts were generated using healthy children,
and many children with CP do fall below the norms. It is
extremely important to continue to monitor the growth
of the child with CP even when he is below the third per-
centile, because even more important than the speciWc per-
centile is the progression and the weight gain over time.
The child who grows along the third percentile over ten
years is better oV than one who falls from the Wftieth to the Hunched posture
third over that same period.
Halitosis Tight
hamstring
(fetor ex ore) muscles
Halitosis means foul or bad mouth odor. The foul odor

may come from the lungs, stomach, or nose, although all
of these sources are uncommon in children. Most halitosis
comes from a source in the mouth—decayed teeth, ulcer- Legs pulled up
ated gums, or poor dental care that leaves decomposed
food in the mouth. Children with cerebral palsy may be
mouth breathers, which can dry out the mouth. This de-
creased moisture leads to less cleaning of the mouth tissues
and thus to bad breath. The major problem these muscles cause for the walking
The treatment of halitosis starts with determining the child is crouching while both standing and walking. Often
cause. You should begin with a complete evaluation by a the knees are bent so that the child’s toes or ankle must Xex
dentist, making sure the dentist knows that you are con- upward. Children who develop severe hamstring contrac-
cerned about the child’s bad breath. Filling all cavities and tures because they sit all the time eventually are unable to
correcting gum problems should be the Wrst priority. This lie down and to straighten their knees completely. Instead,
needs to be followed by good oral hygiene. If this combi- they pull their feet underneath the seat of a wheelchair.
nation does not work, the dentist may refer you for a com-
plete medical evaluation. Using antiseptic mouthwash Indications: Hamstring contractures are treated be-
may help for several hours but should not be considered cause of a child’s problems with walking, sitting, general
the primary treatment. It can be used on a cloth to wipe the positioning, and spastic hip subluxation. Hunched pos-
teeth and the inside of the child’s mouth. ture is another possible indication of the need to lengthen
harrington rod ♦ 409
hamstrings. If the muscle in the front of the knee is very cause some pain and discomfort, occasionally with numb-
tight, it pulls the knee straight; then the tight hamstring ness in the foot, but it almost always resolves.
rolls the pelvis back, causing the child to sit hunched over. The most common but much less problematic compli-
In certain circumstances, the tight muscles may be con- cation after hamstring lengthening is that the hamstring
tributing to hip subluxation. In these situations it may be continues to remain somewhat tight. However, for pa-
necessary, especially if the child can’t stand, to loosen the tients who are walking, it is much better to continue with
muscles as much as possible. The main problem in walking a slightly crouched gait than to stand straight with the knee
for which hamstring lengthening is indicated is a crouched bending backward from overlengthening.
gait.
After-surger y care: The usual treatment after ham-
The surger y: To allow the child to stand up straight, string lengthening involves casts, splints, or just physical
the hamstrings may be lengthened. These lengthenings therapy to gain motion. Most of the time, at least some
are usually done behind the knee; occasionally, the ten- temporary splinting is used while the muscle heals in a
dons are transferred to the femur. Currently, the transfer lengthened position. If casts are used, they should not be
operation is not favored because removing tendons often kept on for more than six weeks as this will increase the
causes hyperextension (the knee bending backward). It is possibility of overlengthening.
extremely important to be conservative in lengthening
What to expect: Following the healing phase, con-
the hamstring tendons because the overlengthened ten-
don can make walking much more diYcult than does the tinued stretching is important. An intensive period of
physical therapy, focusing on improving the crouched gait
underlengthened tendon. Occasionally the tendons may
and occasionally using AFOs, is necessary. AFOs are help-
be lengthened at the buttock through an incision just be-
ful interventions aimed at keeping the muscle stretched
low the hip. This is done less frequently because it may al-
out while the child is relearning to walk. Additionally,
low increased hip Xexion. In this case, often the iliopsoas
night braces may be used for up to a year.
muscle needs to be lengthened on the front of the hip to
balance the muscle forces about the hip.
For seating problems, the hamstring muscle may be Harrington Rod
lengthened either behind the knee or behind the hip.
Again, it is important when lengthening behind the knee (Wisconsin wiring)
to not lengthen too much or the knee will be stuck straight Harrington rods are the oldest spinal instrumentation still
out. For problems in lying down, muscle lengthening be- in use. The rods are attached to the spine with hooks,
hind the hip involves making cuts in the muscle and al- which can then be used to stretch out the spinal curve and
lowing the muscle to slide. Lengthening behind the knee hold it corrected, with the addition of bone graft, until the
ensures that the major muscles are only lengthened an ap- bones heal. This rod has a hook at each end with serrations
propriate amount so they do not completely tear. This is in the rod that allow the hooks to move on the rod to
usually done by cutting the tendinous part and allowing it stretch out the spine, similar to a simple car jack. In the
to stretch, although some surgeons make Z-cuts in the ten- past, this system was used extensively in patients with id-
don, allow it to slide apart, and suture it together again. iopathic scoliosis. It has been largely replaced with dual
BeneWts and risks: The beneWts of hamstring length- (two)-rod systems that are attached to the spine by screws
ening are that the child can sit, stand, and walk more eas- (pedicle screws) or hooks. These dual-rod systems are
ily. There are two severe complications: The Wrst is over- much more rigid and sturdy than the Harrington rod sys-
lengthening the hamstrings, so the knees are stuck straight. tem. These rods are sometimes used with the addition of
This makes walking very diYcult, and the knees eventually wires through the spinal process, which is called a Wiscon-
become painful from bending backward. It makes sitting sin system. Sometimes the rods are used with two hooks at
very diYcult because sitting well requires bent knees. the top. Either system is always combined with a posterior
In correcting severe hamstring contractures, stretching spinal fusion (bone graft).
of the sciatic nerve may occur, most likely during a second Indications: The use of the Harrington rod and its
lengthening. Repeat lengthenings are done when a child variations is indicated for patients with idiopathic scolio-
had a hamstring lengthening four or Wve years earlier and sis. This system has virtually no use for children with cere-
now with growth has tightened up again and needs an- bral palsy except with the occasional child who is walking
other one. Although this is the highest risk area, if the sci- and has a very short curve.
atic nerve does stretch it is usually only temporary. It may
410 ♦ hearing loss / hemiplegia
can be aVected or damaged by low oxygen levels, prema-

turity, infections or severe jaundice. Hearing loss is more
common in children born with a very low birthweight,
and the child with cerebral palsy is at much higher risk than
the general population for hearing problems. Detection of
hearing loss is critical for all children, especially those who
show signs of other problems, in particular a delay in
speaking. The child with severe neurological impairment
may not be responding, and testing hearing will provide
important information about the child’s function at an
early age.
Nonresponsive, very young infants can be tested by
two means: otoacoustic emissions and/or auditory evoked
potentials. Otoacoustic emissions are sounds produced by
the outer hair cells of the organ of hearing (cochlea) and
can be measured in the ear canal indicating cochlear health.
These sounds can be evoked and give a picture of cochlear
function and hearing level. For the auditory evoked po-
tential, a sound is presented to the ear, and brain waves are
recorded. The auditory-evoked potential detects the low-
est sound intensity capable of producing a brain wave. This
test indicates whether there is an alteration in the ear’s abil-
ity to perceive sound, but it does not evaluate how the
child interprets this sound. Conditions such as mental re-
tardation and attention deWcit disorders may impact on
the child’s response to the sound. Very young children can
also be tested by a well-trained pediatric audiologist, if the
BeneWts and risks: The main beneWt of this system child can be taught responses indicating that he is hearing.
is that it is inexpensive and technically easy to use. SpeciWc In order for a child to speak normally and learn lan-
complications are that the hooks have a tendency to dis- guage, he must be able to hear correctly. Often, a language
lodge and that the rod may break after approximately six delay indicates a hearing problem. All children with cere-
months if the fusion has not healed correctly. Generally ad- bral palsy should have their hearing screened at least once,
ditional casts, body jackets, or braces are utilized to pre- and hearing function needs to be maximized to help the
vent the rod from breaking, because it is not as strong as child with CP get the best possible education.
some of the other rods.
Maintenance and care: Generally children with Hemiplegia

Harrington rods need to use casts or special braces until (monoplegia)
the posterior spinal fusion has healed. Some modiWcations
of the rods, however, are designed so that bracing is un- Hemiplegia means motor involvement of one arm and one
necessary. leg on the same side of the body resulting from an injury to
the brain. This term is applied to diYculties caused by any
injury to one side of the brain, whether the injury is caused
Hearing Loss by cerebral palsy, a head injury, a stroke, or a tumor. The
term monoplegia is used for involvement of only one leg
(hearing impairment, auditory evoked potentials)
or one arm. In reality, this is usually an extremely mild
Several things must happen in order for a person to hear hemiplegia—occasionally a child has such a mild involve-
sounds. The sound must get into the ear; the inner ear ment that it aVects only one limb. The term monoplegia
mechanisms must transmit the sound impulse to the brain; should be reserved for those diYculties caused in one limb
and the brain must be able to interpret what the sound by a brain injury and not by nerve injuries such as a brachial
means. At birth, the organs and mechanisms for hearing plexus palsy.
herpes simplex virus / hip muscle releases ♦ 411
Herpes Simplex Virus

Newborns infected with herpes simplex virus can have
hepatitis, pneumonia, meningitis, or encephalitis, which Iliopsoas muscle
can result in permanent brain damage and cerebral palsy.
Others may have more localized infection of the skin, eyes,
and mouth. Newborn infants with a herpes infection have
a high risk of dying from the infection or living with severe
brain damage. Antiviral drug therapy with acyclovir im-
proves the prognosis. If a woman in labor reports signs of
genital herpes infection, then delivery by cesarean section
is recommended, which reduces the risk of transmitting Adductor
the infection to her baby. brevis
muscle
Hip Muscle Releases Adductor

longus
(hip adductor lengthening, adductor lengthening, muscle
adductor transfer, iliopsoas release lengthening or
Gracilis
transfer, obturator neurectomy, anterior branch
muscle
obturator neurectomy, proximal hamstring
lengthening)
Hip muscle releases include a number of similar opera-

tions on the groin to treat problems with walking or spas-
tic hip subluxation, or both. The adductor area, which is
The third reason hip muscles need to be released is if
the inside of the thigh in the area of the groin, involves a
the muscles become so tight and spastic that providing for
number of muscles, and these muscle groups and the
toileting and perineal care becomes impossible. This is of-
nerves that drive them are the primary causes of spastic hip
ten a problem for young adult women who Wnd it diYcult
dislocation. They also cause scissoring problems with gait.
to take care of the menstrual period. The most common
The many diVerent operations are directed toward balanc-
age at which hip muscle surgery is performed to improve
ing the eVect of these muscles with the far less spastic
the ability to provide for perineal care is between 12 and 20
muscles on the outside of the hip.
years of age.
Indications: There are three major reasons why chil-
The surger y: The most widely used procedure in-
dren with cerebral palsy may require hip muscle releases.
volves lengthening selected groups of the groin muscle;
The Wrst is to prevent hips from dislocating. A child usually
the muscles most commonly selected for lengthening are
under age 8 will be examined, and when the hip muscles
the adductor longus and the gracilis. Generally these two
are noted to be tight and an x-ray demonstrates mild hip
muscles are completely cut and allowed to retract. They
subluxation (the hip moving out of the joint), the spastic
will scar back down again to their underlying muscles. For
muscles should be surgically released. Children between
more severe contractures, partial lengthening of the ad-
the ages of 3 and 6 are the most likely to need this operation.
ductor brevis is indicated. Additionally, cutting the ante-
The second reason hip muscle release surgery may be
rior branch of the obturator nerve further weakens the
necessary is to help a child who is walking but whose feet
muscles.
cross. Because the muscles are tight when the legs are spread
It used to be common procedure to cut the entire ob-
apart, they work to keep the feet constantly crossed and
turator nerve, but this weakens the muscles so much that
tangled while the child is walking. This is a common prob-
frequently the legs become stuck in a spread-open posi-
lem that occurs when children with cerebral palsy are start-
tion. Almost all surgeons believe that the posterior branch
ing to walk, but often it may resolve itself without surgery.
of the obturator nerve should be preserved. Some sur-
For some children, however, the problem continues and
geons advocate transferring the heads of the adductor
the surgery is then necessary—mostly commonly between
longus, gracilis, and brevis muscles more toward the rear
ages 5 and 10.
to help extend the hip, but this is a larger and more diY-
412 ♦ hip muscle releases
cult operation, and current reports suggest that it is no other hip becomes contracted across the midline. This mis-
more eVective than a simple release. alignment is usually due to the asymmetry of the involve-
The iliopsoas is a large muscle that contributes signiW- ment, but the use of bracing may also contribute to the
cantly to problems with gait and spastic hip disease. The condition. Some patients will develop this deformity with-
most common procedure involves cutting the tendon and out any medical intervention.
allowing it to retract. In children with severe involvement
After-surger y care: There are several postoperative
who are not going to walk, the goal should be to try to
completely prevent the severed tendon from growing to- care techniques that can be used following muscle releases.
gether again by allowing the whole tendon to retract. If the One form of management is to forgo casting or immobi-
operation is done on children who are walking, only the lization and start immediately with physical therapy. This
tendon of the psoas muscle is cut, allowing the iliacus approach generally makes it slightly harder to handle the
muscle to stay intact. The psoas reattaches again but is child in the immediate couple of hours or couple of days
lengthened. The importance of this is not fully understood after the surgery, but she will be largely recovered and
or completely agreed upon. completely back to her daily routine by three or four weeks
Through the same incision on the inside thigh the after surgery. This method of treating spastic hip disease
proximal hamstring muscles may be lengthened or com- may have a slightly higher incidence of repeat surgery later
pletely released. This procedure works well in relieving on, although this is not well documented. There is clearly
hip subluxation in severely involved children who cannot a lower incidence of developing abduction and windswept
walk. However, many surgeons feel that it should not be deformities. Adductor lengthening done for walking chil-
done on those who walk. Iliopsoas lengthening is by far dren should be immediately followed by physical therapy
the most widely used procedure to work with this muscle, so that they can regain their walking ability.
although there are some physicians who advocate transfer- Another common postoperative management tech-
ring the tendon and suturing it to the pelvis or the hip joint nique involves placing casts on both legs with a stabilizer
capsule. Some surgeons advocate swinging the tendon between to keep the legs apart. Alternatively, the casts may
around and inserting it on the outside of the femur bone, be extended above the hip, with the child in a full-body
which has been done for patients with spina biWda but is cast from chest to toes. Some combination of casting may
not generally felt to be a good procedure for patients with be used for periods ranging from two to six or eight weeks.
spastic cerebral palsy. The advantage of casting is that the child is easier to
handle in the immediate postoperative period, although
BeneWts and risks: The beneWts of these operations she still may have many muscle spasms and need pain med-
involve relieving hip dislocation, improving walking, and icine and antispasmodic medication (usually Valium).
making it easier to care for the perineal area. The risks and When the casts are removed, the child is very stiV and has
complications of these procedures fall into the categories a good bit of discomfort when trying to move the hip and
of either overcorrection or undercorrection. Determining knee joints. The inability to move about easily is especially
how much lengthening is necessary may be diYcult, and diYcult for children who are walkers because they often
certainly the child may outgrow it with time. Whether have a more diYcult time regaining their walking ability.
there was insuYcient release at the time of the Wrst proce- The development of the opposite deformity (a spread-
dure or there was a suYcient release that the child outgrew open position) is increased by this casting.
so that the muscles tightened again, insuYcient release Following the casting, some surgeons prescribe long-
eventually causes the contractures to recur. term abduction braces that hold the legs apart, either at
The more serious complication is overrelease of these night when the child is sleeping, or, occasionally, full-time.
muscles, which causes the legs to become contracted in a The use of bracing after muscle releases, especially muscle
spread-open position. This is very detrimental for children releases done for the treatment of spastic hip subluxation,
who are walking because it makes them walk with a wide- continues to remain controversial.
based gait and a large waddle. For those children who are
What to expect: After hip muscle releases, some
only sitters, this abduction contracture is less detrimental,
physicians use splinting or bracing as noted above. The
but is extremely cosmetically unappealing. It also makes
pain will be quite severe for the Wrst 24 to 48 hours, but by
side lying diYcult.
four weeks after the surgery it is very minimal, occurring
A more common complication of the surgery is the
only with extreme stretching. The muscles should be sub-
combination of overcorrection on one side and under-
stantially looser after the surgery; however, it is very im-
correction on the other, termed windswept hip deformity, in
portant to start an exercise program to maintain Xexibility
which one hip becomes contracted out to the side and the
hyaline membrane disease / hydrocephalus ♦ 413
because the natural tendency is for these muscles to re- the day and how much the child is crying or eating. If the
tighten over time. This is especially true for a child with swelling is not too large and the Xuid does Xow back and
signiWcant growth remaining, who may develop a repeat forth, there are usually no major problems with the scro-
contracture over two or three years to the point where it is tum or abdomen, and certainly for the Wrst six months of
similar to what it was before the surgery was performed. life an operation is seldom necessary.
Children who have had this procedure performed to im- If the same abdominal lining opening and sac, which
prove their walking will need extensive therapy to gain the continues to be present around the testicle, is large enough
maximum beneWt from the release. so that part of the intestine falls down into the scrotum, it
Young adults who have the surgery performed to im- is called an inguinal hernia. Like the Xuid, the intestine
prove toileting and perineal care will Wnd it easier almost may come down into the scrotum and then disappear
immediately. In general, however, they will Wnd that their again. If this area develops redness, becomes swollen, and
hips do not open extremely widely, but that their legs will becomes very painful, it is an immediate emergency, and a
spread much more easily and will stay moderately spread. doctor needs to see the child immediately—he may have
developed a twist in his intestine, which can quickly be-
come life threatening. If the inguinal hernia is present
Hyaline Membrane Disease where the intestine descends into the scrotum it almost
(HMD, RDS, respiratory distress syndrome) never disappears on its own, and a surgical procedure
called a herniorrhaphy is necessary. Hernias and hydroce-
Hyaline membrane disease, previously called respiratory les are very common in children in general, but are more
distress syndrome, is a respiratory disease of the newborn frequent in children with cerebral palsy.
infant. HMD is the leading cause of death in prematurely
born infants in the United States, primarily aVecting those The surger y: The hydrocele that is present after 6
born before 36 weeks’ gestation. Treatment of hyaline months of age and continues to be quite large often should
membrane disease may include the use of a ventilator and be repaired surgically. A hernia in which the bowel de-
concentrations of oxygen, either in an oxygen hood or scends into the scrotal sac should be removed to prevent
through a ventilator. entrapment of the intestines in the scrotum, which is a sur-
The use of artiWcial surfactant, which is placed into the gical emergency. The surgery for the hydrocele and the her-
trachea of a newborn premature infant at risk for HMD nia are similar in that a small incision is made in the lower
shortly after birth has helped reduce the severity of the dis- abdomen, the sac that comes out of the abdomen is re-
ease. The child born prematurely is at increased risk for moved, and the area it comes from in the abdomen is closed.
cerebral palsy. This risk increases when there are additional
BeneWts and risks: There are few complications
medical problems, such as HMD. The premature baby
from this surgery, but occasionally an infection may de-
with HMD is much more likely to suVer periodic episodes
velop. Symptoms include a temperature, loss of appetite,
of hypoxia (low oxygen in the blood), thus increasing the
and a very red and inXamed incision. Occasionally the her-
chances that brain damage will occur. This could lead to
nia or hydrocele may recur; often all that is needed for it to
CP, mental retardation, seizures, or other neurological
close up is to draw the Xuid out of the sac.
complications.
After-surger y care: Hernia repairs are often done
as outpatient surgeries, during which the child has a gen-
Hydrocele eral anesthesia and then is taken home shortly after he
(hernia, inguinal hernia, hernia repair, awakens. The pain is usually minimal and easily controlled
herniorrhaphy) with Tylenol. The child may be somewhat uncomfortable
in certain positions for a week or two but then usually re-
A hydrocele is a collection of Xuid that comes out of the
covers very rapidly. Children who undergo this procedure
abdomen from an open area in the abdominal lining which
can be bathed after three or four days, depending upon the
continues to loop down around the testicles in the male.
speciWc recommendations of the surgeon.
This normally closes at the time of birth but frequently
does not; a boy who develops an enlarged scrotum or ap-
pears to have swollen testicles often has a hydrocele. The Hydrocephalus
Xuid Xows back and forth from the area around the testicle
into the abdomen so that often the swelling seen in the Hydrocephalus is the enlargement of Xuid-Wlled spaces in
scrotum gets larger or smaller, depending on the time of the brain known as ventricles combined with signs and
414 ♦ hyperbaric oxygen therapy / hypersensitivity
greater than 1 atmosphere (therefore described as hyper-

baric because the pressure is above atmospheric pressure).
HBOT is typically administered at 1–3 atmospheres of
pressure.
For many years, HBOT has been successfully used to
treat certain types of infections, carbon monoxide poison-
ing, and decompression sickness in deep-sea divers. A
Tube draining medical specialty known as Undersea and Hyperbaric
excess fluid from Medicine was developed, and indications for the treat-
enlarged brain ment were outlined.
cavity to abdomen
More recently, HBOT has been advertised as a treat-
ment for traumatic brain injury and stroke, as well as for
more chronic brain injuries such as those associated with
CP. This treatment has received a great deal of publicity de-
spite very little scientiWc evidence that it works. It is not
clear from a scientiWc standpoint how HBOT could help
overcome damage to brain tissue that occurred years be-
fore in a child with CP. When HBOT was studied in a sci-
entiWc manner in two groups of children with CP, with a
control group placed in pressurized room air and a treat-
ment group in pressurized oxygen, both groups improved,
without any diVerence between the two groups. Similar
results were found in a second such controlled study of
children with CP.
Ear pain/discomfort and bleeding from the ear are
by far the most commonly reported adverse events during
HBOT. In addition, there may be an increased risk of
seizures in those treated with HBOT.
In summary, HBOT is a treatment that has long been
known to work for speciWc medical problems, but has re-
symptoms of increased intracranial pressure. This enlarge- cently been touted as a cure for CP. The limited amount of
ment derives from an imbalance in the production and ab- controlled scientiWc studies do not support these claims,
sorption of cerebrospinal Xuid, and is usually caused by and one should proceed cautiously before embarking on
blockage in the normal circulation of this Xuid. this treatment, which is expensive in terms both of time
Hydrocephalus can be seen in children who have and money.
cerebral palsy. Because CP is the result of some scar in the
brain, the scar may occur in an area aVecting the natural
Xow of the Xuid in the brain. When this occurs, then a
Hypersensitivity
blockage may develop, and the Xuid builds up. Extra Xuid (tactile defensiveness)
may also be present because the brain damage is so large
The brain must receive or register stimuli in order for a re-
that there is a decreased amount of brain tissue; if it is able
sponse to occur. For this reason, individuals with cerebral
to drain naturally, it does not need intervention. Most of
palsy can experience a number of diYculties with the sen-
the time, however, when increased Xuid is present, a shunt,
sory system as a result of their brain abnormality. The
or drainage tube, must be inserted.
problems frequently involve the senses of touch and equi-
librium as well as awareness of the body’s movement and
Hyperbaric Oxygen Therapy position in space.
Hypersensitivity to touch is called tactile defensive-
(HBOT)
ness. Normally, infants react to touch in a self-protective
Hyperbaric oxygen therapy (HBOT) is the inhalation of manner but become more comfortable as they learn to
100% oxygen inside a chamber that is pressurized to discriminate among degrees and varieties of touch. The
impairment / inclusion ♦ 415
individual who is unable to mature in this fashion re- Inclusion

mains highly reXexive and self-protective. The goal of
(mainstreaming)
therapy is to enable the child to develop an adaptive re-
sponse to touch. The answer is not to avoid touching, but Within the educational system, the practice of moving
rather to have the child be gradually able to handle the sen- children with disabilities into regular classrooms or a
sation of being touched. Therapists use a number of tech- regular school environment is called inclusion or main-
niques, including varied textures, to stimulate the desired streaming.
responses.
Hypersensitivity to external heat or cold can present Indications: A child whose cognitive abilities are
diYculty for the individual with cerebral palsy because of age appropriate, who is able to communicate, and whose
the diminished ability to self-regulate body temperature in medical problems do not necessitate specialized medical
response to air temperature. What this means is that a child care can be mainstreamed. SpeciWcally, if a child entering
sitting in an excessively warm room will not automatically Wrst grade requires a wheelchair for mobility but can speak
be able to discharge heat and can become seriously over- and is at approximately the age-appropriate cognitive level,
heated. Similarly, the self-regulating mechanism that con- she should be mainstreamed in almost all environments.
serves body heat in cold weather is impaired. Caregivers
BeneWts and risks: The primary beneWt of inclusion
must be aware of external temperatures in order to moni-
is that it exposes a child with a disability to other children
tor the individual’s comfort and safety.
who do not have disabilities and vice versa. This can im-
DiYculties with equilibrium and position in space re-
prove her circle of friends and give her an expanded, more
sult from malfunction of the vestibular and proprioceptive
normalized school experience. Through inclusion children
systems. Individuals most commonly display two prob-
without disabilities are allowed the opportunity to de-
lems: gravitational insecurity and an intolerance of spin-
velop a better understanding of what it is like to have a dis-
ning or circular movement. Because of gravitational inse-
ability.
curity, the child may react with intense anxiety to a simple
The major disadvantage of inclusion is that frequently
change in head position. For example, he may become very
the staV is not as specialized, so that teachers without spe-
frightened when placed on an examining table, not be-
cial experience or training will be providing education to
cause he fears a needle, but because he has the sensation of
the child with a disability. This is not a major issue if the
falling. Spinning or turning may cause excessive nausea
disability does not greatly interfere with the child’s regular
and discomfort. Reassurance, combined with therapeutic
functioning, but the child with severe motor or cognitive
intervention aimed at bringing about an appropriate re-
limitations may not be handled well by an educational staV
sponse to these sensations, can help a great deal. Sensory
with no speciWc training in educating children with dis-
integration therapy, in particular, is designed to overcome
abilities.
these hypersensitive reactions.
Another disadvantage is that many public schools do
not have specialized equipment that can beneWt a child
Impairment with a signiWcant disability. Also, inclusion is supported by
educational administrators because it is cheaper than send-
(disability) ing a child to a specialized facility with more equipment
An impairment is a biological condition or disease, and specialty trained staV.
whereas a disability is the immediate manifestation of this Maintenance and care: The decision to mainstream
condition as it aVects behavior. Thus, cerebral palsy is an a child is not made just once during a child’s lifetime to ap-
impairment that can cause the disability of limited limb ply forever. Rather, it must continually be reevaluated as
movement. the child grows and develops. For example, a child may en-
A disability restricts or causes diYculty with speciWc ter kindergarten, Wrst grade, or second grade in a special-
functional activities. For example, a child who has an am- ized educational environment where additional expertise
putated foot may be disabled because he has diYculty in early childhood education and additional medical ser-
walking. If the amputated foot, which is the impairment, vices and equipment are available. As this child continues
is replaced by a prosthetic foot that allows the child to walk to develop, a decision may be made in middle school that
normally, the child no longer has a disability because his he can be moved to a regular environment for part of the
prosthesis is in place. day, and then as the child enters junior high, he may be
ready for complete inclusion. For many children it is not
416 ♦ incontinence / individualized education plan
entirely clear whether inclusion will be a positive or a neg- then behavior modiWcation techniques may be used to
ative experience. In these cases this type of graduated, on- teach the child bladder control. These should include a
going evaluation is especially appropriate. conditioning technique such as a reward system or an
alarm system. In the older child, medication is sometimes
used to control enuresis.
Incontinence Incontinence of stool is not an uncommon problem.
(urinary incontinence, bowel incontinence) Constipation is very often the cause with a child who has
previously been toilet trained and then begins to have fecal
Incontinence is deWned as the inability to prevent the acci- soiling. What happens is that the child builds up a large
dental loss of urine or feces. Incontinence is normal for the mass of dry stool which is diYcult to pass, and then liquid
newborn baby, but most children are toilet trained by age feces Xow around this mass past the sphincters. Fecal in-
3. However, urinary incontinence (enuresis), especially at continence caused by such an impaction is often mistaken
night while sleeping (nocturnal enuresis), is a common for diarrhea, because the stool that is escaping is liquid.
condition and usually does not need a medical evaluation Fecal incontinence may also occur when the toddler-
until the child is close to age 6. aged child is stressed, such as following the birth of a sib-
Generally, achieving normal bladder control requires ling or a death in the family. If soiling begins at the time of
the following steps: (1) an awareness of the bladder as it toilet training, it is best to back oV and stop the training for
contracts; (2) the ability to realize the state of a full bladder awhile, as this is a sign that the child simply is not emo-
and to plan ahead to go to the bathroom; (3) the ability to tionally prepared to be trained. Incontinence of stool is
inhibit early contractions and postpone urination, and to commonly seen if the child is mentally retarded or has se-
facilitate the emptying reXex when circumstances are vere constipation. Cerebral palsy by itself is almost never
right; (4) an awareness that the bladder has emptied com- the cause of failure to become continent. If the child is de-
pletely; (5) the ability to hold urine when the bladder is velopmentally age appropriate but is still soiling, an evalu-
overWlled or during momentary stress by voluntarily con- ation is in order, looking for constipation or neurological
tracting the muscles of the pelvic Xoor; and (6) the ability problems as the cause.
to inhibit emptying during sleep. Thus, a child needs to be
developmentally ready before he can be toilet trained, and
the child with mental retardation or a developmental delay Individualized Education Plan
may be toilet trained at a later age than other children. (IEP)
Incontinence may also be caused by physical problems,
including a urinary tract infection or an abnormality of the An individualized education plan is a written plan that
urinary system. In the child with cerebral palsy, the nerves outlines the educational program for a child in special ed-
going to the bladder may not be functioning normally, and ucation. It is to be reviewed annually and agreed to by the
may cause either involuntary emptying of the bladder or parents of the child after they meet with members of the
abnormal retention of urine to the point that the bladder school staV who are trained to develop the plan and ex-
“overXows” and urine dribbles out. These two conditions plain it to parents.
aren’t common, but may occur in the child with cerebral The IEP for a school-aged child with CP (over the age
palsy, although they occur far more frequently in children of 3) will be based on therapists’ and teachers’ evaluations,
with other neurological disorders such as spina biWda. as well as on a psychological evaluation. The process usu-
A child who is incontinent during the day beyond the ally includes a physical therapist’s assessment of the issues
expected age of 3 or 4, and who otherwise is developmen- around gross motor problems, and often also includes oc-
tally normal, should have a good physical examination, a cupational and speech therapists if the child with CP has
urinalysis, and a urine culture. With the child with cerebral Wne motor or speech problems too. The IEP should de-
palsy with normal cognitive function, the problem may lie scribe the child’s level of development and should specify
in his physical ability to get to the toilet or his inability to goals for the child with CP in each of the following areas:
sit up on the toilet. This latter problem is not just physical gross motor, Wne motor, speech and language, social, and
but also psychological: the toilet seat may evoke fear in the cognitive skills. It also should specify who will work on
child who feels as if he is going to fall, and thus he may not each of the goals (i.e., teacher, O.T., P.T., etc.) and how of-
be able to relax enough to cooperate in toilet training. ten each week the child will receive each therapy. It should
There is equipment available to help support a child sitting also specify the extent to which the child will be able to par-
on a toilet. ticipate in regular educational programs. This should re-
If tests show that the bladder and kidneys are normal, sult in an educational program based on the individualized
ifsp / inhibition therapy ♦ 417
needs of the child. A suitable IEP needs direct parent in-

volvement.
Individualized Family Ser vice Plan

(IFSP)
An individualized family service plan is a written plan that

outlines early intervention services for a child under age 3 Nails with correct
with disabilities and his or her family. It is similar to an straight cuts
Nail cut too short, causing
IEP, but the focus is on the family as a whole, rather than swelling and inflammation
just the child. It describes the services necessary to enhance
the development of the child with disabilities and the abil- with a small piece of lamb’s wool helps avoid further irri-
ity of the child’s family to meet the child’s needs. tating the inXamed tissue. If the skin is very red and ex-
The IFSP for the child with CP who is younger than 3 tremely warm, antibiotics may be necessary.
years of age is based on evaluations by therapists and doc- If soreness does not improve within a week, occasion-
tors. Like the IEP, it should specify an educational pro- ally surgical drainage or excision of the edge of the nail is
gram and a therapeutic program aimed to meet speciWc needed to allow the toe to heal. This is often not necessary
goals for that individual child. It will be based on evalua- for a Wrst- or second-time inXammation; however, after a
tions of the child’s cognitive, gross and Wne motor, speech nail has become repeatedly infected, it often develops a sig-
and language, and social skills, and should aim to meet niWcant amount of scar tissue, and the only way to elimi-
goals in each of the deWned areas. In addition, based on an nate the problem completely is to do a surgical excision of
evaluation by a social worker, it should also address family the edge of the toenail.
needs that are related to the child’s disability, such as
respite care or homemaker services for a parent who is
working with the child. Inhibition Therapy
Some disciplines of physical therapy work to prevent
Ingrown Toenail movements or activities that are considered damaging to a
certain child; activities that avoid these pathological pos-
(infected toenail, paronychia) tures make up inhibition therapy. Examples of inhibition
An ingrown toenail is a nail that has inXamed skin over- are placing a cast on the foot to prevent extensor posturing
laying it. It is caused by either trimming the nail too close of the upper body, or positional changes, such as placing
to the skin or having too much pressure against the side or the child in a sitting position to prevent her hyperextend-
corner of the nail. Once the tissue has become infected, it ing her spine and head.
is diYcult for the infection to heal. Once tenderness is felt, Indications: Inhibition therapy is useful for children
the primary treatment should be to prevent pressure and with signiWcant primitive posturing. This is especially true
discontinue wearing shoes that put pressure on this area of for the child who is doing a lot of extensor posturing, such
the nail. It might be helpful to take an old pair of athletic as trying to straighten up and pull out of a wheelchair in-
shoes and completely cut out the top front of the shoe so voluntarily. It is also useful for some children with athetoid
the toe with the inXamed nail does not get any pressure. movements in which some of the unwanted movements
A common cause of ingrown toenails in children with may be suppressed by restricting distant parts of the body.
cerebral palsy is wearing braces that irritate the toenail or
cause the shoes to be too tight for the toenail. A common BeneWts and risks: The major beneWt of this ther-
cause in teenagers with cerebral palsy is the development apy is that it allows the child more conscious control of the
of Xat feet, so that the pressure when walking is on the side upper extremities and the head. To be able to use augmen-
of the toe, causing the toenail to be irritated. tative communication devices with hand control or head
To prevent ingrown toenails, the toenails should be control, certain movements or postures may need to be in-
carefully trimmed straight across, and the corners and cu- hibited. The major risks of inhibitive treatment involve the
ticles should not be touched. To treat an ingrown nail, the possibility of pain from placing too much pressure, espe-
inXamed toenail should be soaked twice a day in warm wa- cially with foot braces or wheelchairs that have not been
ter and dried well. Packing under the corner of the toenail Wtted properly. Some children use so much force in trying
418 ♦ inhibitive casting / intrathecal baclofen
to extend their hips that it can be very diYcult to Wnd the used for inhibiting movement. The AFO may be worn to
right straps or bars to hold them in the proper position. immobilize the ankle, and normal shoes can be worn over
the orthotic, providing a much more cosmetically accept-
Maintenance and care: It is important when using
able approach to casting.
inhibition therapy to continue to make sure that braces
and wheelchairs Wt well and do not cause skin irritation. BeneWts and risks: Using inhibitive casts, or alter-
This is especially important during the child’s growth, natively an AFO, with the goal of inhibiting movement
but attention to good Wt may need to continue even into does improve positioning and function in some children,
adulthood. although as soon as the immobilization is removed the ben-
eWt is lost. Elaborate tone-reducing splints and casts with
special pressure points have been developed but have not
Inhibitive Casting demonstrated any beneWt over comfortably Wtting AFOs.
(tone-reducing cast, tone-reducing brace, serial Inhibitive casts are most beneWcial after acute head injur-
casts) ies because the casts prevent short-term contractures, and
with time the brain heals and the tendency to contract
Inhibitive casts are usually applied to the legs and some- decreases. In some clinics, serial casts are frequently used
times the arms to inhibit a speciWc movement. Initially the after botulinum toxin injection.
cast may be used to stretch out a contracture, such as a The purpose of both casting and the use of an AFO is
tight Achilles tendon. The cast is used to keep the foot in a to stretch tight muscles and provide positioning. The serial
position where the sole and heel touch the ground. By cast involves placing a cast that is removed after several
keeping the ankle from Xexing, other movements are im- weeks and replaced with another. However, the position
proved, and the elbows Xex better, Wngers move more eas- of the body part being casted is now closer to normal from
ily, and spasticity decreases in the hips or knees. The inhib- the eVect of the Wrst cast. Theoretically, one can continue
itive ankle-foot orthosis (AFO) is useful in stabilizing the with this process until the desired position is achieved. The
ankle for standing. inhibitive cast is similar but is removable by the caregivers
for bathing and any other functions that the physician may
recommend.
Maintenance and care: Serial casts often require

changing every two to three weeks. If they are applied
too tightly, they must be removed on an emergency basis.
If the child has had a cast applied, and it becomes very
painful, then an emergency may occur because the muscle
may be in such spasm that it will not get enough blood
Xow.
One of the main reasons serial casts are used much less
commonly now is because of the diYculty of maintaining
a cast on a child, which means the child cannot be bathed,
and the discomfort of ongoing cast wear. As soon as the
cast is removed, within several weeks to a month all its ben-
Indications: Indications for the use of inhibitive eWts have been lost, if ongoing casting or splinting is not
casts are not well deWned. There is variable success when performed. Some physicians feel that using botulinum
they are used for severe spasticity or in the attempt to toxin with casts allows the gains achieved in stretching to
stretch out tight muscles. Initially, the muscles may be able be maintained for a longer time frame. In the long term,
to be stretched out, but as soon as the casting is discontin- maintenance and care in terms of this problem is much
ued the contracture recurs. Whether inhibitive casts can more easily done with well-Wtting AFOs.
decrease unwanted movements or improve function also
remains uncertain. There clearly are some patients in whom
immobilization of the ankle does decrease the amount of Intrathecal Baclofen
abnormal posturing. However, as soon as the immobiliza- (baclofen pump, ITB)
tion is removed, the posturing returns.
In general, the use of inhibitive casts for children with Spasticity is the most common motor disorder in cerebral
cerebral palsy is rapidly decreasing, but AFOs are widely palsy and is seen in approximately two-thirds of those with
intrauterine growth retardation ♦ 419
CP. While some spasticity may be necessary for function in to an intraspinal catheter. The pump is inserted under gen-
children with CP, it is often a problem that can be diYcult eral anesthesia. Postoperatively, the patient remains Xat in
to treat. Multiple approaches are available for treatment of bed for 48 hours.
spasticity. These include physical and occupational ther- The pump reservoir is reWlled through a port in the
apy, oral medications, Botox injections, orthopedic sur- pump that is directly under the skin, at intervals of ap-
gery, and neurosurgical procedures such as selective dorsal proximately 2–6 months. Dosage adjustments are made
rhizotomy. via an external computer/programmer and transmitted
Baclofen is a muscle relaxant that when taken by mouth to the pump by a handheld computer mouse. Doses can
is not always helpful in treating spasticity in children with be programmed to deliver the baclofen in several ways.
CP. However, when given to patients intrathecally, i.e., Examples include: the same dose all day long (“continu-
into the spinal Xuid, it works much more consistently and ous”); the same dose all day long, with occasional extra bo-
eYciently to reduce spasticity with fewer side eVects. The luses given when spasticity is highest (“intermittent bolus”);
goals for treatment with intrathecal baclofen should be or continuous doses that vary throughout the day based
realistic and individualized, and they need to be agreed on on when spasticity is highest (“complex continuous”).
by patient, family/caregiver, and medical team. Ideally a Important issues to consider include:
multidisciplinary team should be involved in the decision • A history of seizures is not a contraindication to in-
making. trathecal baclofen therapy.
Patients with dystonia have also responded to this • The presence of a ventriculoperitoneal shunt is not a
treatment, often at higher doses. Patients with athetosis, contraindication either. Patients with VP shunts may
ataxia, and myoclonus have not noted improvement. ITB require a smaller dose of baclofen.
can help with spasticity-related pain during the day and at • The patient must be big enough and have enough
night. room in his abdomen to accommodate the pump.
A trial of baclofen by mouth is not a prerequisite for pa- • The patient and family need to understand and accept
tients with spasticity and CP to receive the pump. When a the look of the pump. You typically can see and feel the
patient is felt to be a potential candidate for ITB therapy, a pump under the skin. It is about the size and shape of
screening trial is scheduled. This involves a lumbar punc- a hockey puck.
ture and injection of an intrathecal baclofen test dose. • The entire team must agree on appropriate goals.
Spasticity scores are recorded preinjection and at 2-hour • The patient and family must be motivated to achieve
intervals postinjection, for up to 6–8 hours. If the trial dose these goals and be committed to the follow-up re-
is felt to have beneWted the child, and if the parents agree, quired to maintain the pump treatment.
then placement of the pump is the next step. Patients who
have had a spinal fusion cannot undergo a trial, but they Success of the intrathecal baclofen therapy seems to be
can have the pump implanted. related to appropriate patient selection, setting of achiev-
The ITB delivery system consists of a programmable able goals, patient and family motivation and compliance,
subcutaneously implanted pump with a reservoir attached and the help of a dedicated multidisciplinary team.
Intrauterine Growth Retardation

(IUGR)
Intrauterine growth retardation is a term used to describe

Catheter a fetus that is not growing appropriately in the uterus. In-
Baclofen fants born with IUGR are small for their gestational age,
pump with a low weight, short length, and small head circumfer-
ence, and they almost always have had some signiWcant
insult that explains their growth retardation. Causes for
IUGR might include congenital infections, such as cy-
tomegalovirus (CMV ) or toxoplasmosis, or malnutrition,
placental insuYciency, or a variety of other conditions. In-
fants with IUGR are at increased risk for developing cere-
bral palsy because the brain is also very dependent for its
full-term development on normal intrauterine growth.
420 ♦ jaundice / kyphosis
Jaundice myoclonic seizures. The diet should not be tried without

the supervision of a health care provider and dietitian,
(hyperbilirubinemia, icterus, “yellow skin”)
both of whom must be knowledgeable in the diet.
Yellow discoloration of the skin and eyes is called jaundice.
While jaundice can be an early sign of liver disease, in new-
born infants it is a common problem and is not usually
Knee Immobilizers
associated with any disease. This type of jaundice, called A common problem for children with spasticity is the de-
“physiological jaundice,” rarely leads to problems. velopment of tightness in the hamstring muscles (back of
When babies are born, they have a high red blood cell the thigh). This can make it hard to stand upright and can
count. As these red blood cells are broken down in the Wrst even make sitting hard. A splint that is often used is called
few days of life, a breakdown product called bilirubin is a knee immobilizer. The goal of this splint is to hold the
generated. If the bilirubin is not excreted through the liver knee completely straight. The splint is usually made of
and gastrointestinal system, the child will become jaun- canvass or plastic and is wrapped around the leg and Wxed
diced and appear yellow. This is common in the Wrst few with Velcro straps. This splint does not need to be custom
days after birth because the liver is not yet mature enough Wtted. Rather, it comes in a number of diVerent standard
to break down all the bilirubin. If the level becomes too lengths, one of which should be right for a particular child.
high, the baby is put under special lights called “bili- The knee immobilizers can be used to prevent or im-
lights,” which help break down the bilirubin as it goes prove contractures. For this purpose they probably need to
through the blood vessels in the skin. If the bilirubin level be worn approximately 8 hours a day. This means wearing
continues to rise even after treatment with bili-lights, then them during sleep time for most children, so the splint
exchange transfusions can also be done. Such a transfusion does not prevent sitting and moving during wake times. A
is not often done in a full-term healthy baby, but is still major side eVect of the splints is that many children cannot
done in small premature babies in whom complications tolerate them during sleep, and they severely restrict the
can develop from a lower level of bilirubin than in a full- child if they are worn during the day. Knee immobilizers
term baby with a higher birthweight. are also frequently used after surgery, especially after ham-
Sometimes jaundice in newborns is not benign. For in- string lengthening.
stance, a severe infection in the blood system can cause
jaundice, as can defects of the liver and incompatibility of
the blood type of the mother and the infant. This last, he- Kyphosis
molytic disease of the newborn, was a common cause of (round back)
severe hyperbilirubinemia in the years before photother-
apy and exchange transfusions began to be used to prevent Kyphosis is the term for a rounded spine or a severely
the complications of severe jaundice. The high levels of slouched body frame. Also referred to as forward bending
bilirubin caused kernicterus, a staining of part of the brain of the spine, kyphosis is very common in young children
with bilirubin, causing brain damage. This resulted in with cerebral palsy who do not have good upper body con-
lethargy, poor feeding, and a shrill cry. trol. Their kyphosis completely corrects itself when they lie
While many babies with severe kernicterus died, many down. For children with cerebral palsy the deformity is
of those who survived eventually showed signs of the due to poor muscle control, but kyphosis may also occur
athetoid type of cerebral palsy. in adolescents in the front of the spine as a result of abnor-
mal growth. In this case, it is called adolescent round back
or Scheuermann’s kyphosis.
Ketogenic Diet Sometimes the bones in the front of the spine form
abnormally during the child’s development, in which case
The Ketogenic Diet is a treatment for seizures. The Keto-
the child is said to have congenital kyphosis. The most
genic Diet is a rigid, mathematically calculated, physician-
common kyphosis occurs in older people, especially older
supervised diet that is very high in fat and very low in car-
women—their bones soften and the spine collapses down,
bohydrate and protein. It usually has three to four times as
and they become severely round-backed. This condition is
much fat as carbohydrate and protein combined. Fluids
termed senile kyphosis and is due to osteoporosis.
and calories are strictly limited. This diet allows the body
to primarily burn fat for energy rather than glucose. The Care and treatment: Kyphosis in children with cere-
Ketogenic Diet can be considered in patients with any bral palsy is not well deWned. It typically occurs between
seizure type, but is most eVective in absence, atonic, and the ages of 3 and 8 when children with severe involvement
laryngeal stridor / laryngoscopy ♦ 421
ties. For this reason a body jacket or a body brace may be

used for positioning comfort, and for better head control
Hunched posture and arm use. As the large curve becomes stiV, however,
children have diYculty lying on their backs. Often they end
up lying on their sides. When they are sitting, the head can-
not be held back, and they end up with the head dropped
forward. At this point it is uncertain whether this posture
has any eVect on respiration or gastric function. For some
children, breathing and eating habits improve when they
can sit or stand in a straight position.
Lar yngeal Stridor

(laryngomalacia, tracheomalacia, inspiratory
stridor)
Laryngeal stridor during the Wrst few months of life is a

harsh sound heard during respiration. It can be high-
pitched when the child breathes in. If stridor appears, it
usually results from a disturbance in the formation of the
larynx or the trachea. There are many causes of stridor. The
most common of these, laryngomalacia, is caused by weak
cartilage in the airway and results in partial airway ob-
have diYculty with trunk control. When treating a young
struction.
child with kyphosis, it is necessary to modify the wheel-
chair so that the child sits up straight. At this age, often the Care and treatment: Usually no therapy is needed,
best treatment is the use of an adequately contoured since the condition improves on its own by 18 months of
wheelchair with shoulder straps and a reclining seat. A age. There may be diYculty feeding a child with stridor.
prone stander that stimulates the child to pull her spine up Rarely, a child will need a tracheostomy or other proce-
straighter and lift her head is another useful device; a dure because of the airway obstruction. Most children
stander that does not support the child’s upper body and with this condition seem more comfortable and less noisy
allows her to slouch forward without any support for the lying on their stomachs.
chest should not be used. Seats that are contoured with a If the child with cerebral palsy develops laryngomala-
round back, such as the plastic molded tumble frames, cia or tracheomalacia in early or later childhood, it may be
should also be avoided, as they can make kyphosis worse. associated with severe gastroesophageal reXux. The under-
Special exercises are not very helpful, since the child mainly lying reXux is treated with either medication or surgery.
needs to mature. Other children with cerebral palsy can develop upper
As children increase their trunk control, this type of airway obstruction and stridor because of low tone of the
kyphosis is generally corrected, although a few children muscles about the throat and face. The low muscle tone
enter adolescence with the head drooped forward and causes the tongue to fall to the back of the throat, which in-
shoulders rolled severely forward. Sometimes this posture termittently obstructs the airway. This problem does not
becomes stiV, which makes sitting up and looking forward tend to disappear with time, although positioning the
diYcult. It is also very diYcult for children to sit in a chair, child on the stomach sometimes resolves the problem. If
especially if the kyphosis starts stiVening, and they are un- not, some children need a tracheostomy to relieve the air-
able to lie down except in a ball shape. For the rare child way obstruction.
whose deformity stiVens, a posterior spinal fusion and in-
strumentation to straighten the spine is recommended
in order to allow the child to sit up straight, look forward, Lar yngoscopy
and interact with the environment. (bronchoscopy)
Complications due to the kyphosis are not well deWned.
Children between ages 3 and 8 with Xexible kyphosis have Laryngoscopy is a simple procedure that involves inspection
no known complications, except that they roll forward and of the larynx and upper airway. An indirect laryngoscopy
have diYculty holding the head up to participate in activi- is done with the aid of a mirror; a direct laryngoscopy, in
422 ♦ latex allergy / lordosis
the oYce, involves a small, Xexible bronchoscope that is vices, these should be provided in the least restrictive envi-
passed through the nose. Rigid bronchoscopy with a metal ronment. This means that the child receives services in set-
telescope requires general anesthesia. Bronchoscopy is an tings and facilities in which children without disabilities
examination of the lower airway, including the trachea and would participate, unless the Individualized Family Ser-
mainstem bronchi. vice Plan (IFSP) or the Individualized Education Plan
(IEP) indicates a need for a special setting.
BeneWts and risks: Bronchoscopy and laryngoscopy
An example of a least restrictive environment is the reg-
are useful procedures for inspecting the airway and ob- ular classroom, in which a child who can speak and has an
taining a culture or biopsy. Also, a foreign body can be re- age-appropriate cognitive level, but requires the use of a
moved via bronchoscopy. Complications of bronchoscopy wheelchair, should be included with age-matched peers in
can include transient hypoxia (a decrease in oxygen in the almost all environments. On the other hand, a child who
blood) and spasm of the larynx or bronchus. Less com- has severe mental retardation with severe motor disability
monly oral or dental injury can occur. A child can also con- would not be expected to be in a regular classroom with
tract a post-bronchoscopy croup, which is usually short- age-appropriate children, because the least restrictive envi-
lived and can be treated with medications and mist. ronment for this child would not be able to meet the
child’s needs as identiWed by the IEP.
Latex Allergy For a signiWcant group of children with cerebral palsy,
determining the least restrictive environment that best
Latex is a natural rubber produced by the rubber tree. meets a child’s needs may be very diYcult. In fact, there
Some people develop allergic reactions after repeated con- may be a combination of environments that would meet
tact with latex. Allergic reactions can be localized, such as the child’s needs, which has to be clariWed by the IEP.
rash and itching after wearing latex gloves, or generalized,
such as sneezing, runny nose, or wheezing. Rarely, life-
threatening reactions (anaphylaxis) can occur. Lordosis
Latex allergy usually aVects people who are routinely (swayback)
exposed to latex products such as health care workers and
people who have had multiple surgeries or medical proce- Lordosis refers to the spinal curvature that is normally
dures. This includes children with medical conditions, present in the small of the back. In the person with sway-
such as myelomeningocele or occasionally cerebral palsy, back, the spine arches to such an extent that it causes the
that result in multiple surgical operations or repeated blad- abdomen to protrude. If a person spends a large amount of
der catheterizations. time sitting, lordosis can be beneWcial because it projects
Latex can be encountered in medical equipment such the weight of sitting forward onto the thighs where the
as latex gloves, blood pressure cuVs, drains, tourniquets, likelihood of developing pressure sores is decreased.
urine catheters, and adhesives used for dressings. Latex can An abnormal amount of lordosis as an isolated prob-
also be found in common household items such as rubber lem is the most rare spinal deformity in children with cere-
bands, computer mouse pads, and balloons. Several aller- bral palsy. Severe lordosis may be a long-term complica-
genic proteins have been identiWed, some of which are tion after a dorsal rhizotomy procedure. It is frequently
similar to and “cross-react” with proteins in certain foods, associated with scoliosis, but usually scoliosis is the most
such as bananas, kiwi fruit, and avocados. predominant deformity; the lordosis is an additional diY-
If a latex allergy is suspected, a blood test can be done culty. Some children with lordosis roll so far forward that
that tests for latex-speciWc antibodies. Once the diagnosis their abdomens rest on their thighs; this makes seating al-
is conWrmed, avoidance is the best way of treating a latex most impossible. It is extremely diYcult to modify wheel-
allergy. Most health care products are now made with latex- chairs to correct for increased lordosis, although the main
free alternative materials, and most hospitals and many method is to recline the wheelchair to about 45 degrees.
physician oYces now have a latex-free environment, thus Indications: Once increased lordosis becomes a signi-
reducing the likelihood of developing a latex allergy. Wcant condition, it tends to get slowly worse until a spinal
fusion is performed. The indications for spinal fusion are
Least Restrictive Environment rare in this deformity. Fusion should be considered when
lordosis makes sitting diYcult or impossible or if it causes
If a child with cerebral palsy or other disability is found to intractable back pain. Unfortunately, bracing or wheelchair
need early intervention services or special education ser- modiWcations do not beneWt or change severe lordosis.
magnetic resonance imaging / medical home ♦ 423
cause of the cerebral palsy. This is mainly to rule out such

problems as brain tumors, major vascular abnormalities,
or other treatable conditions.
BeneWts and risks: MRIs currently have the highest

ability to pick up disorders of the brain of any imaging test
available. The major risk is in requiring the child to hold
very still for a prolonged period of time, from 15 to 30 min-
utes. This requires heavy sedation for many children, and
because there is some risk of breathing problems, the child
needs to be closely monitored. There is no pain involved
Swayback with the study, though patients who are uncomfortable in
spinal curve small spaces may feel very anxious inside the machine,
which looks like a large tube.
Malformation of the Central

Ner vous System
Three percent of newborn infants have major malforma-
tions of the central nervous system. Some are caused by
genetic conditions and others by environmental factors,
including maternal infections or drugs. However, the ma-
jority do not have a known cause.
Such malformations can fall into a number of broad
categories, including neural tube defects, anterior midline
defects, spinal cord dysraphic states, disorders of cellular
Magnetic Resonance Imaging migration, and agenesis of the corpus callosum. The last
(MR, MRI) two are often found in association with cerebral palsy. Dis-
orders of cellular migration are often a direct cause of CP,
Magnetic resonance imaging is an imaging method used whereas agenesis of the corpus callosum frequently causes
extensively for examining brain tissue, though it may also seizures.
be used to image the spine or other areas of the body. It in-
volves being placed in a very large magnet that temporar-
ily magnetizes body water. Radiofrequency pulses are used Medical Home
to measure the properties of the water in body tissue. The
A medical home is an approach to providing comprehen-
computer uses this information to create a series of pic-
sive primary care to children with special needs. Ideally,
tures. There is no radiation involved in the MRI scanner,
such a medical home is deWned as primary care that is ac-
but the child is required to lie very still, which often means
cessible, continuous, comprehensive, family centered, co-
sedation will be needed. Sometimes intravenous contrast
ordinated, compassionate, and culturally eVective. This
material is injected to learn more details about the body
concept has been developed by the American Academy of
tissue.
Pediatrics with the hope that many pediatricians and fam-
This machine is the most sophisticated imaging method
ily physicians will serve as medical homes for chronically ill
available. It can detect most major brain problems such as
and physically disabled children.
tumors, large congenital deformities, increased Xuid, and
In a medical home, the clinician works in partnership
many degenerative conditions. However, many children
with the family and patient to assure that all of the medical
with cerebral palsy can have normal MRI scans. The reason
and nonmedical needs of the patient are being met. Such
is that MRI picks up anatomic defects. Very tiny abnor-
services might include specialty care, educational services,
malities or functional problems present in the brain cannot
family support, and other community services that are im-
be seen on MRI.
portant to the health of the child.
Indications: Many children with cerebral palsy will Though the American Academy of Pediatrics proposed
have one MRI scan, unless there is clear evidence as to the this deWnition of a medical home in 1992, eVorts to estab-
424 ♦ meningitis and encephalitis / metabolic disorders
lish such medical homes for all children have encountered Mental Retardation
many challenges. One of the major ones is a lack of ade-
(cognitive impairment)
quate reimbursement for the kinds of services that physi-
cians provide to children with complex medical problems. Mental retardation is a term used for intellectual function-
In contrast to care provided in a medical home, care pro- ing which is at least two standard deviations below the
vided through emergency departments, walk-in clinics, norm; it is usually categorized as mild, moderate, or se-
and other urgent care facilities, though sometimes neces- vere. It may exist concurrently with cerebral palsy or by it-
sary, is more costly and often less eVective. self without a motor disability. It is generally diagnosed
during the developmental period from 2 to 8 years of age.
It is nearly impossible to make a Wrm diagnosis or deter-
Meningitis and Encephalitis mination of mental retardation in the very young child, be-
Meningitis is an infection of the covering over the brain cause tests of intellect are not valid until age 3. Treatment
(called the meninges); encephalitis is an infection of the involves recognizing the child’s functional level and plac-
brain substance. Although there is a diVerence between ing him in an educational environment where he is able to
these two conditions, the net result can be very similar. The maximize his natural learning abilities.
most common cause of viral encephalitis is the herpes sim- Approximately two-thirds of children with cerebral
plex virus. Meningitis may also be caused by a virus (in this palsy also have mental retardation. One-third have mild to
case, it is called aseptic meningitis), but it is more com- moderate MR, one-third severe to profound MR, and
monly caused by bacteria, such as meningococcus, hemo- one-third have normal intelligence. The presence of men-
philus inXuenza, and pneumococcus. tal retardation is often the most disabling factor for the
Generally children with meningitis develop a fever and child with CP.
stiV neck; they may also have diYculty eating, and they
may vomit. Older children often complain of sensitivity to
light and a headache. Infants stop feeding. A child with
Metabolic Disorders
meningitis may fall into a coma. There are many types of metabolic disorders, which vary
considerably in their clinical and pathological aspects.
Care and treatment: Although the incidence of
However, all are due to single gene defects that result in
meningitis has fallen dramatically since the introduction
abnormal or deWcient enzymes or proteins. Thus, their
of the Hemophilus inXuenza (Hib) vaccine, and more re-
pathology is typically the result of an inability to properly
cently the pneumococcal vaccine, many children in the
make or break down compounds necessary for normal
United States still contract bacterial meningitis each year.
body functions.
When a physician suspects meningitis, a lumbar puncture
When an enzyme is not working properly, the sub-
(called a spinal tap) is done, and samples of spinal Xuid
stance it is to metabolize builds up in excess, as do other as-
are sent for laboratory examination. If the infection is
sociated compounds. Disease can result from these excess
diagnosed and found to be bacterial, antibiotics are used
metabolites, which can in many cases be toxic to the brain
to treat the infection. There is no medicine that treats
and other organs. In other cases, it is the absence of the
most kinds of viral meningitis, and most patients with
compound that would have been produced by the deW-
viral meningitis recover without treatment. Infection of
cient enzyme that causes disease. Many children with meta-
young infants with herpes virus can be treated with a
bolic disease thus appear normal at birth and may not be
medication called acyclovir. Infections with polio, ru-
identiWed with cerebral palsy until the pattern of metabolic
bella (German measles) and mumps, all of which can
disease becomes apparent.
cause encephalitis or meningitis, are preventable with
Treatment for a very few metabolic disorders involves
immunizations.
replacing the necessary enzyme. For most, however, treat-
The aftereVects of meningitis or encephalitis include
ment is limited and consists of dietary manipulation and
brain damage or death, though most children recover with-
the use of dietary supplements to decrease the buildup of
out severe complications. Those with brain damage may
injurious compounds and maximize the function of any
have cerebral palsy and/or mental retardation. Up to 40
enzyme available. The success of these interventions varies
percent of children with bacterial meningitis (especially
widely.
meningitis caused by pneumococcus) suVer hearing im-
The number of disorders identiWed as metabolic has
pairment in one or both ears.
dramatically increased over the past years. Despite this,
metabolic disorders ♦ 425
they are still relatively rare. In many, but not all states in the prolonged fast causes what little enzyme they have to be
United States and in several other countries, newborns are overwhelmed and the classic severe symptoms develop.
screened for a number of metabolic disorders for which Diets limited in certain amino acids, the provision of
early identiWcation and treatment is often successful in pre- vitamins or cofactors to aid in the function of any available
venting irreversible injury. enzyme, and the avoidance of fasting in the fatty acid dis-
orders, can help to prevent or limit the injury in these dis-
Aminoacidopathies: Amino acids are components
orders. For several of the fat metabolism disorders, chil-
of protein. Disorders of the breakdown of many diVerent dren may be healthy and developmentally normal if these
amino acids have been identiWed. The features vary, once measures are taken early.
again depending on the type and speciWc toxicity of the
compounds involved. Energy production disorders: Energy production
One of the best known of the aminoacidopathies is disorders involve enzymes that convert the foods we eat
phenylketonuria (PKU), which results from the inability into a useable form of energy for our bodies. Protein, fat,
to break down the amino acid phenylalanine. It causes and carbohydrates all require breakdown by speciWc en-
seizures, mental retardation (often with autistic features), zyme pathways such as those mentioned above. However,
and spastic cerebral palsy. Features worsen with age. How- all utilize a Wnal shared pathway of enzymes to Wnally gen-
ever, treatment in the newborn period with a diet low in erate energy.
phenylalanine is eVective in preventing these features from These disorders may be similar to the organic acidemias
developing in most patients. Diet is generally suggested in that the most severely aVected children often become ill
for life, though the risk for development of severe features at or shortly after birth. Others, typically those with more
decreases after childhood when brain development is oc- enzyme, may have episodic symptoms, usually, but not al-
curring. However, decreases in IQ have been reported ways associated with high levels of the acids lactate and of-
even in adults with PKU who go oV of diet. Women with ten pyruvate. In some of these disorders, children have
PKU who become pregnant put their children at risk for speciWc symptoms during episodes, such as ataxia (dis-
birth defects and mental retardation if they do not follow coordinated walking), confusion, and liver abnormalities.
the diet strictly during pregnancy. Like in the organic acidemias, they often display slow re-
gression in skills over time with a picture of cerebral palsy
Urea cycle defects: Organic acidemias involve the
and mental retardation.
metabolism of certain amino acids and fats, which become
acids in their breakdown processes. In these disorders, Lysosomal storage diseases: Lysosomal storage
children typically have episodic symptoms, often with cat- diseases comprise a number of hereditary diseases marked
astrophic outcome due to the buildup of large amounts of by deWciencies of enzymes involved in the metabolism of
acid, and often ammonia, in the blood. In the disorders in- complex lipids involved in the formation of the mem-
volving fat metabolism hypoglycemia is typical. Symp- branes that surround cells. These enzymes are housed in
toms often occur in the early newborn period, with an ill- organelles within the cells called lysosomes. They result in
ness, or with a fast when our bodies are actively trying to accumulation of the unmetabolized or poorly metabolized
break down these substances for energy. Many die during compounds trapped inside the lysosomes. Unlike the or-
this Wrst episode. ganic and amino acid disorders, these accumulated materi-
Most of these children have very little enzyme and als cannot easily get out of cells. As they build up in higher
symptoms occur very early and are not likely to be misdi- and higher quantities, they cause the cells to swell and im-
agnosed as cerebral palsy. However, there are children pair their function.
with some functional enzyme who have milder symp- Some of these disorders primarily involve cells in the
toms. These children may have unexplained vomiting, central nervous system such as Tay-Sachs disease. Others
poor growth, and developmental delays. Presumably, they can involve other organs such as the bone marrow, heart
are experiencing high acid levels, ammonia levels and/or valves, liver, spleen, and the soft tissues such as skin, ten-
hypoglycemia episodically, but to a lesser degree than dons, and airways. Hurler syndrome and Hunter syn-
those with very little enzyme. Often, the abnormalities drome are the best known of this type. Children may be
go unrecognized, and developmental delays and even cere- mistaken early on as having cerebral palsy because joints
bral palsy worsen over time, as these children may lose become tight and Wxed due to storage in the tissues around
developmental skills with illnesses. These children may them, and mental retardation is common. An enlarged
eventually be diagnosed when a more severe illness or a liver and or spleen, and a “coarsening” of the facial features
426 ♦ m i c r o c e p h a ly
due to thickening of the skin, as well as a course of regres- Cholesterol metabolism disorders: The best
sion in development are clues to the diagnosis. Over time, known syndrome in this group is the Smith-Lemli-Opitz
these disorders worsen; death usually occurs in childhood. syndrome (SLOS). Typical children have an unusual pat-
No treatment has been available until recently. Currently, tern of facial features, limb abnormalities, cataracts, mal-
intravenous infusion of the missing enzyme is available for formations of the genitals, kidneys, and brain, growth
some, but not all of these disorders. retardation from very early on, mental retardation, and
spasticity. Within the past few years, SLOS has been found
Peroxisomal disorders: Peroxisomes are similar to
to be caused by an enzyme defect causing impaired choles-
lysosomes in that they house certain enzymes in our
terol formation, which aVects the child’s development in
cells. Most peroxisomal enzymes are involved in fat me-
the womb. Indeed, these children often have very low cho-
tabolism or in making components of cell membranes.
lesterol levels in their blood.
When one or more enzymes are deWcient, neurological
A blood test has been developed to detect SLOS, and
problems are typical such as low muscle tone, hearing loss,
as is often the case, once we have a test for a disorder, we
seizures, and mental retardation. Some children have un-
come to know the full range of features. Children have
usual facial features, short limbs, and unusual Wndings in
been found to have the disorder who have only mild de-
their bones on x-ray. Depending on the enzyme aVected,
velopmental delays. Cerebral palsy could be an accompa-
the liver may become enlarged and function poorly.
nying feature in a mildly aVected child with presumably
Cataracts and other eye abnormalities can be seen. Because
more functional enzyme than the classically aVected chil-
low muscle tone is usually present at birth, these children
dren. Very high doses of cholesterol in the diet have been
may be presumed to have CP until other features develop.
associated with some measurable improvements in some
Unlike the energy production or organic acid disorders,
studies.
these children typically do not have episodic symptoms,
but their course is progressive and usually leads to early Purine and pyrimidine disorders: Purines and
death. pyrimidines are components of DNA. Purines are impor-
X-linked adrenoleukodystrophy (XALD) is one such tant in energy transfer. DeWciency of several of the enzymes
disease. It involves a peroxisomal enzyme necessary to involved in purine metabolism can cause hypotonia and
break down a particular form of fat. Onset of symptoms in other neurologic problems. Seizures, growth problems,
most cases is between 5 and 10 years of age, with behavioral muscle weakness, and unusual problems such as recurrent
changes (often tantrums, irritability) and then regression infections, kidney stones, and symptoms of gout may be
in motor skills, which is severe and involves the white mat- seen in some of these disorders. Of this group of disorders,
ter of the brain. the best known is Lesch-Nyhan disease. Children tend to
be normal at birth. Often within the Wrst year, spasticity
Disorders of glycoprotein metabolism: Disor-
and severe choreoathetosis (involuntary movements of the
ders of glycoprotein metabolism (also known as carbohy-
face, tongue, and limbs) develop. Seizures are quite com-
drate-deWcient glycoprotein syndrome or CDG) are a rela-
mon and a very distinct involuntary self-destructive biting
tively newly identiWed group of disorders with a very broad
of the Wngers, arms, and lips is seen. Many children have
range of symptoms. Glycoproteins are chemicals that acti-
mental retardation, but normal intelligence can be seen.
vate or depress the brain and nervous system, the clotting
High uric acid levels can lead to kidney stones and kidney
components of the blood, and hormones to name a few of
disease, though not typically to gout. Drugs such as valium
their functions. Many enzymes involved in making the
may help with the self-mutilation but are not a cure.
glycol or carbohydrate portion of glycoproteins have been
Pyrimidine disorders typically have more nonspeciWc
found to be deWcient. For this reason, there have been
features such as spasticity, growth retardation, and sei-
varying symptoms in this disorder. Liver disease, seizures,
zures. Some types have an unusual anemia and autistic fea-
bleeding and clotting problems, poor control of blood
tures have been seen.
sugar with hypoglycemia or hyperglycemia have been
seen, along with spasticity and all ranges of developmental
delay. Some patients have one or more symptoms. Those Microcephaly
children with spasticity may be mistaken for having cere-
bral palsy. The presence of more than one unexplained fea- Microcephaly is the term used when a child’s head circum-
ture of this disorder, such as a clotting problem, with CP ference is more than two standard deviations below the
would make consultation with a metabolic specialist worth- mean measurement for children of the same age and gen-
while to consider CDG. der. Normally the circumference of the head is measured
on a regular basis, during the Wrst few years of life during a
motor synergy / movement disorders ♦ 427
pediatrician’s routine exam and beyond that age if there is the brain that controls this type of movement. In the early
a problem. While there are genetic conditions leading to stages this movement disorder may look like athetoid
microcephaly without any brain damage, usually micro- cerebral palsy; however, unlike CP, ballismus gets progres-
cephaly reXects poor brain growth from some damage to sively worse.
the brain, such as an intrauterine infection, severe hypoxia
Chorea: Chorea is a movement disorder that prima-
at birth, or meningitis during infancy. Those with the
rily involves the distal joints, mostly toes and Wngers. It is
severest forms of microcephaly are usually severely re-
characterized by small, irregular, nonstereotyped jerky
tarded, and many others may have spastic cerebral palsy.
types of movements. These small, uncontrolled dancing
movements cannot be controlled very well and usually
Motor Synergy cause signiWcant problems with Wne motor control. Unlike
tics, they cannot be voluntarily suppressed. Although sim-
(co-contraction of muscles)
ilar movements occur in children with cerebral palsy, CP is
Motor synergy, or co-contraction of the muscles, means rarely the main component of the movement disorder.
that muscles that have opposite functions contract at the
Dystonia: Dystonia is a movement disorder involv-
same time. For example, the quadriceps muscles on the front
ing prolonged muscle contractions that may cause twisting
of the thigh may contract at the same time as the hamstring
and repetitive movements or abnormal posture. Usually,
muscles behind the thigh. Therefore, neither muscle is able
the arm is drawn up and may be held in the air in a Xexed
to function upon the knee to cause it to bend, and the net
position, and sometimes the face or neck is aVected, too.
result is a stiV knee. Although this may feel similar to spas-
Dystonia may also involve the legs. When a child Wrst
ticity, motor synergy usually occurs with speciWc activities,
shows signs of having dystonia, contractures do not de-
such as walking. During walking, the muscle contracts at
velop; over long periods of time, however, the muscle be-
inappropriate times, so the muscle, which normally would
comes contracted from remaining in the same position.
not be contracting, is actively blocking the normal joint
Generally, the body relaxes when the person sleeps or is at
movement.
rest. Dystonic movements may then occur when move-
Exaggerated muscle synergy is a signiWcant problem
ment is initiated, producing “motor overXow.”
for many children with cerebral palsy. Treating the under-
The treatments for dystonia include medications and
lying spasticity will not stop muscle synergy, although
nerve injections. The drug Artane is usually used but does
physical therapy to improve muscle coordination and to
not often eVectively reduce the abnormal movement. Bot-
develop the ability to control these co-contractions is often
ulinum toxin injections work well for small muscles around
beneWcial. With appropriate treatment, a child’s muscles
the neck, face, and eyelids. Surgical releases of dystonic
will continue to improve until the age of 8 or 10. With gait
muscles can be very unpredictable, and, even without
analysis, the speciWc contraction patterns can be identiWed,
treatment, one dystonia pattern can suddenly change into
and occasionally a muscle can be moved into an area where
another one.
it functions appropriately, such as with the rectus and ham-
This pattern change may mean that suddenly the prob-
string muscles.
lem that had predominantly aVected one arm may start
aVecting a foot. More commonly, however, it means that
Movement Disorders the arm or foot was twisted in a way that pulled it into Xex-
ion, and then suddenly it switches so that the arm is held
This term is used to describe various abnormalities of in extension. When a child with dystonia is seen brieXy by
movement. They are divided into diVerent types, based on a physician, the posture may look like typical hemiplegic
the kind of movement that is seen. pattern cerebral palsy. Based on one short examination, a
mistake can be made that could lead to very bad outcomes
Ballismus: Ballismus involves extremely large recur-
following surgical procedures.
rent, rapid, Xapping, involuntary violent movements of
There are certain components of this pattern, however,
the arms, often in a circular pattern, but may occasionally
which should not be missed, such as the relatively little
involve the legs as well. These appear to be large Xailing
amount of muscle contracture which is usually present and
movements which may be so eruptive and strong that they
the postural changes that the family may complaint about.
throw the person oV balance and cause him to fall. This
Dystonia may be present without signiWcant changes over
movement disorder is extremely rare and can be very diY-
many years; however, some children get progressively worse
cult to control when it is present. The prime treatment is a
over a matter of four or Wve years.
neurosurgical procedure on the brain to remove the part of
428 ♦ muscular dystrophy / myositis ossificans
Tics: Motor tics are abnormal movements that tend death is usually from complications with their breathing or
to be frequently repeated and usually follow the same pat- heart function in the late teens or twenties. Progress in
tern. Examples of motor tics include sniZing, swallowing, managing these problems has improved the quality of life
throat clearing, coughing, eye blinking, facial grimacing, for individuals with this disease.
or neck stretching. In fact, any part of the body may be- The various forms of muscular dystrophy can have a
come involved. However, most individuals who experi- wide range of variability in terms of the severity of the dis-
ence such tics do so only for a short time, and only 10 per- ease. Issues such as muscle contractures and scoliosis need
cent of the population may experience a tic lasting one to be addressed as they are in cerebral palsy.
month or more. Usually the onset is during childhood or
early adolescence, with the transient tic disorder lasting
anywhere from one month to one year, beyond which time Myopathy
it is considered to be a chronic tic disorder. Myopathy is a family of diseases described by muscle
In addition to motor tics the child may have vocal tics weakness based on underlying muscle (not nerve) prob-
as well, such as grunts, barks, or clearly articulated words lems, most of which are quite rare. However, a child with
and phrases. When words or phrases are used as part of a a myopathy can appear very similar to one with hypotonia,
tic, this often leads to the diagnosis of Gilles de la Tourette which can be an early symptom of cerebral palsy. Thus, a
syndrome. Although tics are not a sign of cerebral palsy, child with a myopathy may initially be thought to have CP.
tics occur more frequently in children with CP. There are often speciWc congenital errors of metabolism or
metabolic problems that cause the myopathy. The term is
Muscular Dystrophy used in association with many diVerent diseases whose
symptoms vary from only mild weakness to severe weak-
Muscular dystrophy: The muscular dystrophies ness at birth and a short life expectancy. The causes of my-
are a group of disorders that cause progressive weakness of opathies vary; speciWc causes should be investigated, be-
muscle. They are divided into various types based on the cause some forms can be treated with medications and
physical features an individual presents with, the severity signiWcantly improved. The treatment is dependent on
of weakness, the characteristics of the muscle when looked making a speciWc diagnosis; once a speciWc diagnosis is
at under a microscope, and how they are inherited. There made, genetic counseling is usually indicated.
are a number of genes which are now known to cause dif-
ferent forms of muscular dystrophy. One of the most com-
mon forms is Duchenne muscular dystrophy. This form is Myositis OssiWcans
characterized by progressive weakness of muscles through- Myositis ossiWcans is inXammation of muscle tissues, es-
out the body due to a deWciency of a protein called dys- pecially voluntary muscles, in which bone forms in muscles
trophin in the muscle itself. Boys are mainly aVected be- or soft tissue where it is not supposed to. Rarely, the cause
cause the gene for this disorder is located on the X of this abnormal bone formation is genetic, but by far the
chromosome which they receive from their mother. Ge- most common cause of myositis ossiWcans is a head injury.
netic counseling is indicated in families with a member Typically, extra bone forms in the Wrst 2 to 6 months after
identiWed as having muscular dystrophy. Boys are usually the injury, then gradually subsides as the child becomes
diagnosed between the ages of 3 and 5 because of problems more functional. In rare situations, bone may form in the
with walking, running, and frequent falls. These symp- muscles of children with cerebral palsy who have had their
toms can also be seen in cerebral palsy. However, these muscles lengthened, and there have been reports of chil-
children have a very typical pattern of walking and rising dren developing bone formation around the hip after
from a seated position. When these signs and symptoms spinal fusions or other large surgeries. Usually, however,
are seen, a blood test for a muscle enzyme called creatine the bone slowly resorbs after its initial development. With
kinase (CK) may be done. CK is signiWcantly elevated in a small group of children, the bone formation is so exces-
Duchenne muscular dystrophy and usually elevated in the sive that it completely fuses the hip joint or the elbow
other forms of muscular dystrophy as well. If CK is ele- joint. It is rare around the knee and rare around the shoul-
vated, genetic testing or muscle biopsy may be recom- der but may occur at these joints, as well.
mended to conWrm the diagnosis. The weakness in Du-
chenne is progressive and most children are wheelchair Care and treatment: The typical treatment is gentle
bound between the ages of 8 and 12. The respiratory physical therapy focusing on range of motion, coupled
muscles and the heart are aVected as well and the cause of with anti-inXammatory medications. In rare situations,
neural tube defects / neurogenic bladder ♦ 429
after physical therapy has been completed and a year or are contemplating becoming pregnant should begin pre-
so has passed, surgical excision of this bone may be at- natal vitamins, including 400 micrograms of folic acid, be-
tempted. If a surgical procedure is done, the child needs ra- fore they conceive, or as early in pregnancy as possible.
diation treatment to prevent the bone from reforming. Although children with spinal cord deformities are
similar to children with cerebral palsy in that both must
cope with a major disability, children with paralysis from
Neural Tube Defects spinal cord deformities have problems unique to their con-
(anencephaly, encephalocele, spina biWda, dition. On the surface, their problems appear similar to
meningocele, myelomeningocele) those seen in children with cerebral palsy; however, in gen-
eral the medical and long-term care is diVerent and should
The term “neural tube defects” (NTDs) refers to a group not be confused.
of malformations of the spinal cord, brain, and vertebrae Children with paralysis have no sensation in the para-
that occur during early pregnancy. lyzed area, which puts them at great risk for developing
The three major forms of neural tube defects are spina skin ulcers from high pressure on the skin. A second major
biWda, encephalocele, and anencephaly. The most com- diVerence is that the bowel and bladder are paralyzed,
mon form is spina biWda, which is the second most com- which means that they must follow a very speciWc bowel
mon disability in childhood after cerebral palsy. Spina bi- program and the bladder must be managed with a catheter.
Wda occulta is the most common and also the most benign Repeated bladder and kidney infections can lead to kidney
form. This form involves a defect in the vertebrae only, failure. Increasing spasticity may also be caused by the
with no protrusion of spinal cord tissue or of the meninges spinal cord being caught as a result of the child’s growth or
(the membrane tissue covering the cord). Meningocele being scarred down in the congenital deformity. Often
involves a defect in the vertebrae with protrusion of these children combine severe leg weakness with good arm
meninges, while protrusion of both meninges and mal- strength. This allows them to walk with special long leg
formed spinal cord tissue through the bony defect is called braces, but the type of braces used for children with spinal
mylomeningocele. The defect is most common in the lum- paralysis often diVers from those used with children with
bar or lumbosacral area, though it can be anywhere along cerebral palsy. Children with CP also seldom have a para-
the spinal cord. lyzed bowel and bladder or insensate skin.
Ninety percent or more of those with lumbosacral
myelomeningocele also have hydrocephalus (increased Xuid
on the brain) and Arnold-Chiari malformations (improper NeuroWbromatosis
folding of the base of the brain). An infant with a meningo-
In this genetically inherited disease, the nerves develop
cele has little to no central nervous system malformation,
large, tumorlike lesions. There are brown spots on the
rarely develops hydrocephalus, and usually has a normal
skin called cafe au lait spots and some underlying nerves
neurological examination. Those with myelomeningocele,
are enlarged. NeuroWbromatosis may be severe, involving
depending on the level of the lesion, are often paraplegic,
signiWcant distortion of the face and head, and some people
incontinent for urine and stool, and have various abnor-
develop severe tumors causing blindness and retardation.
malities of the genitourinary tract, which can lead to infec-
If a child shows retardation or a gait disturbance, he or she
tions and kidney damage.
may initially be thought to have cerebral palsy instead of
The other two forms of neural tube defect are both
neuroWbromatosis. If a parent has neuroWbromatosis,
more severe but less common. Encephalocele refers to
there is a 50 percent chance that any child of that parent
malformation of the skull through which a portion of the
will also have it. The treatment involves removing very
brain protrudes. AVected children have mental retarda-
large neuroWbroma lesions that cause diYculty with leg
tion, hydrocephalus, spastic weakness in their legs more
movement or that are painful. Sometimes radiation or
than their arms, and seizures. Anencephaly refers to an
chemotherapy are used to decrease the size of the growths.
even more severe malformation of the skull and brain with
Genetic counseling is indicated for parents and for anyone
no brain tissue developing above the brainstem. About
with the disease who is contemplating having a child.
half of these fetuses are spontaneously aborted. Infants
born with anencephaly do not survive beyond the Wrst few
days to weeks of life. Neurogenic Bladder
While the cause of neural tube defects is not fully un-
derstood, a high percentage seem to be caused by a deW- Neurogenic bladder means a bladder that is functioning
ciency of folic acid. Doctors recommend that women who abnormally because of damage to the nerves that control
430 ♦ nystagmus / obstructive sleep apnea
bladder function. Since cerebral palsy aVects the brain

above the spinal cord, if there is bladder dysfunction, it is
of the upper motor neuron type. This means that the blad-
der will most likely be spastic and the sphincter tone ab-
normally increased, with uninhibited contractions. The
sphincters may contract tightly but are not under normal
voluntary control. This means that the bladder may fre-
quently empty, even when not full, and at times not con-
venient for the child.
Care and treatment: Treatment, under the care of a

urologist, is based on urodynamic Wndings. Anticholiner-
gic medications are often used to minimize uninhibited
contractions, the most common of which is oxybutynin
(or Ditropan).
Nystagmus school children have obstructive sleep apnea. Obstructive

sleep apnea is much more common in children with ab-
Spasticity may cause the eyes to have a rhythmic jerking normal muscle tone (such as those with cerebral palsy), as
or jumping movement, called nystagmus. Nystagmus ap- well as those with muscle diseases or abnormalities of
pears in several forms: in vertical nystagmus, the eye the upper airway or the skull bones (craniofacial abnor-
moves up and down; in horizontal nystagmus, it moves malities).
sideways; in rotary nystagmus, it tends to move around in Symptoms of obstructive sleep apnea include snoring
a circle. Nystagmus is frequently triggered by a certain and labored breathing during sleep. Family members might
gaze, such as gazing up or to one side. Because position notice the child’s chest caving in or abdomen (belly) mov-
orientation often initiates nystagmus, many children learn ing vigorously during sleep. Sometimes the child may ac-
to control it by avoiding looking in those directions. tually gasp for air and arouse or seem to wake up during
these episodes of labored breathing. Color changes may
Care and treatment: It is diYcult to treat nystag-
occur as well. Some children sleep in unusual positions,
mus when it is consistent and signiWcant, and it may cause with the neck extended or may even sleep sitting up.
diYculty with eyesight. Children with cerebral palsy may It is important to remember that even in children with
have nystagmus, which causes signiWcant problems for Wne severe symptoms at night, breathing is usually normal dur-
eye movement skills such as eye tracking, which is required ing the day. Some children will be congested or be chronic
for reading. Sometimes the nystagmus can be suppressed mouth breathers, while others (most) will have no symp-
by immobilizing the head or preventing some head move- toms at all.
ment. Trial-and-error investigation with the individual child When breathing is labored at night and sleep is dis-
is required to determine what works best. rupted, behavioral symptoms or excessive daytime sleepi-
ness can result. Some children with obstructive sleep apnea
Obstructive Sleep Apnea and severely disrupted sleep may be hyperactive and there
is growing evidence that school performance or learning
Obstructive apnea occurs when, despite breathing move- can be aVected by poor sleep quality. Sleep disruption can
ments, no air Xows in or out of the lungs. Obstructive ap- occur in obstructive sleep apnea for several reasons includ-
nea is diVerent from central apnea in that during a central ing the natural “arousal” response to airway obstruction
apnea event, no breathing eVorts or airXow is apparent. and to abnormalities of the blood oxygen or carbon diox-
Obstructive sleep apnea occurs when there are episodes of ide level. A pattern of disrupted sleep may occur many
obstructive apnea during sleep. times during the night, resulting in ineYcient, poor-quality
Despite the impression that snoring, restless sleep, and sleep. Other night time symptoms can include bedwetting,
sleep apnea are adult problems, obstructive sleep apnea is sweating and of course, snoring and labored breathing.
actually common in children. Snoring, the most common Other than behavioral and learning diYculties, ob-
symptom of obstructive sleep apnea, occurs frequently in structive sleep apnea can have other eVects as well. In se-
children as well. It is estimated that up to 10–12 percent of vere cases it can lead to growth failure (failure to thrive),
children snore and that up to 1–3 percent of healthy pre- hypertension, and, even less commonly, heart failure.
orthodontics / osteopenia ♦ 431
Taking a careful sleep history and doing a sleep study quent fractures. There are a number of variations of this
to detect the presence of obstructive apnea help diagnose condition, the most severe of which occurs in children
obstructive sleep apnea. A sleep study is a test that is safe, whose bones fracture even when the child is simply picked
painless, and highly accurate in making the diagnosis. In up. Many of these children live no more than several weeks
all cases a careful airway evaluation is indicated, since in because of their severe bone fragility. There are other chil-
otherwise healthy children, the most common cause of ob- dren with osteogenesis imperfecta who essentially live
structive sleep apnea is enlargement of the tonsils and ade- normal lives except that they may have two or three frac-
noids, and removal of the tonsils and adenoids almost al- tures throughout their growing years. Many children
ways cures the sleep apnea. In children with cerebral palsy must signiWcantly limit their activity because of their bone
however, abnormal muscle tone may be the major prob- fragility; nevertheless, they continue to walk—or they use
lem and this is more diYcult to overcome. Treatment may wheelchairs part of the time.
be tried with continuous or bilevel positive airway pres- Treatment with a class of medications called bisphos-
sure (CPAP or BiPAP®), supplemental oxygen or rarely a phonates has helped improve the bone density in these
tracheostomy. children, to the point that many of them are able to func-
tion far better and have far fewer fractures. The most com-
monly used medication has been Pamidronate, an intra-
Orthodontics venous form of bisphosphonate, which is given every 3–4
(malalignment of teeth) months for a number of years. As they go through adoles-
cence and develop adult hormonal levels, the bone fragility
Sometimes when a child’s teeth come in, they don’t meet diminishes signiWcantly to the point that, as adults, they
each other in a way that best facilitates chewing and speech. seldom have fractures. On the surface, many children with
Malaligned teeth can also spoil a person’s appearance (this OI may seem similar to children with cerebral palsy. They
is more important to some people than to others). may need to use braces, may have angular deformities, and
Indications: Children with signiWcant spasticity around may have diYculties with ambulation. However, children
with OI always have normal balance, coordination, and
the mouth are at risk of developing malaligned teeth from
muscle control, which are almost never present in children
this abnormal pull. Treatment involves, Wrst, deciding
with CP.
whether the malalignment presents a problem serious
enough to require treatment. This determination involves
considering the severity of the child’s neurological defect Osteopenia
as well as the potential eVect on the child who must wear
braces for several years. (low bone mineral density, osteoporosis)
For any brace to work, the child must be able to co- Low bone mineral density, or osteopenia, in children is
operate which may be very diYcult for the child with spas- deWned as a bone mineral density that is two standard de-
ticity, who may bite down every time something is put in viations or more below the mean for age and gender. In
his mouth. Other considerations are the family and child’s adults, bone mineral density is compared with that of a 25-
concern about cosmetic appearance, the availability of an year-old woman as the standard, because that is the age at
experienced orthodontist, and the willingness and ability which bone mineral density peaks. The number of stan-
of someone to pay for the treatment. While orthodontic dard deviations above or below the mean is written in
treatment may be desirable, it should have relatively low shorthand as a T-score. In children, the bone mineral den-
priority on the list of health-care priorities established for sity is compared with children of the same age and gender,
an individual child. Certainly, other dental needs such as and the number of standard deviations above or below the
maintaining healthy gums and preventing and treating mean is referred to as a Z-score. Thus, a Z-score of –2.0 or
cavities are more important. Nevertheless, each child must lower is considered osteopenic, as the bone density is two
be evaluated as a separate individual and his case consid- or more standard deviations below the mean. The Z-score
ered with regard to other medical needs, family desires— below which a child would be at risk for fractures, how-
and, most important, the child’s desires. ever, has not been deWned.
A number of conditions in childhood can lead to os-
Osteogenesis Imperfecta teopenia, such as osteogenesis imperfecta (OI), various
medications (such as prednisone), and various conditions
Osteogenesis imperfecta is a genetic condition. A child that lead to lack of weight bearing (such as astronauts in
with this condition has very fragile bones and suVers fre- space). Those children with quadriplegic CP who are not
432 ♦ otoacoustic emission testing / passive motions
able to walk and are primarily in wheelchairs for most of

the day are at a very high risk to develop osteopenia. If, in
addition, they are taking certain anticonvulsant medica-
tions that interfere with Vitamin D metabolism, such as
phenobarbital or phenytoin, if they get little sun exposure,
or if they are unable to eat adequate amounts of Vitamin
D and calcium containing foods, then their risk is even
greater. These children are then at risk for osteoporosis,
at risk to develop nontraumatic or pathological fractures,
meaning that their bones break from a degree of trauma
that would not ordinarily cause a fracture. Such activities
as dressing a child, or picking them up, can result in a frac-
ture in children with severe osteoporosis.
As children with CP become young adults, the risk of
osteopenia increases. Peak bone density occurs by age 25
for everyone and then begins to decrease over time. If
these children have not built up their bone density suY-
ciently by that age, it will fall into the low range very
quickly, thus exposing them to the risk of pathological
fractures. We also know that once a child with CP has had
a pathological fracture, her risk for having more such frac-
tures increases signiWcantly. Just as described for children
ist to be sure nothing is wrong with the outer or middle ear
with OI, children with quadriplegic CP who have devel-
to prevent the sounds from being measured.
oped severe osteoporosis and recurrent fractures, are being
treated with a class of medications called bisphosphonates,
which has been shown to improve their bone density, and Pancreatitis
hopefully will also decrease their risk of fractures.
Pancreatitis is an inXammation of the pancreas that is char-
acterized by abdominal pain, nausea, and vomiting and by
Otoacoustic Emission Testing an increase of the pancreatic enzymes, amylase and lipase.
It is usually self-limiting. Some medications that can cause
Otoacoustic emission testing (OAE) is an objective method
pancreatitis include valproic acid and certain diuretics.
of ascertaining ear-speciWc hearing thresholds. The outer
Pancreatitis can also be seen after a posterior spinal fusion,
hair cells of a healthy cochlea actually both receive and
a surgical procedure used for the treatment of scoliosis,
produce sounds. A probe placed in the outer ear canal can
which results from the pancreas being trapped in front of
measure these sounds. These sounds are produced sponta-
the spine. Treatment includes: pain management and
neously and can be elicited by a delivered sound. This en-
bowel rest for 1 to 2 weeks, while intravenous feedings are
ables an audiologist to place a small probe in a child’s ear
given. This is followed by a low-fat diet or placement of a
canal, deliver a sound, and measure the OAEs. If they are
special feeding tube beyond the stomach so that feedings
present, it typically signiWes that the cochlea is healthy and
are delivered into the small intestine, thus bypassing the
hearing normally. Because the OAEs are very quiet, the
pancreatic opening in the duodenum. The pancreatitis
child must be quiet or asleep during the test. OAEs are be-
usually resolves between 4 and 6 weeks after the onset of
ing used to screen hearing in young infants and children
the elevated enzymes.
who cannot cooperate either because of age or disability, as
it does not require any behavioral response on the part of
the child. Passive Motions
If the audiologist cannot measure the OAEs this can
mean that there is a hearing loss in the involved ear, but Passive motions are exercises performed upon a child with-
it could also mean that there is something blocking the out the child’s assistance. Passive stretching involves some-
sounds (like ear wax, Xuid in the middle ear, etc.). Because one else stretching a child’s muscles. These are common
of this, a child who “fails” his OAE test will often be ex- exercises that physical therapists use for children with cere-
amined by a pediatrician or an ear, nose and throat special- bral palsy.
patellar pain / pelvic osteotomy ♦ 433
Patellar Pain out with physical therapy, surgical hamstring lengthen-

ing should be considered to get the child to stand up
(chondromalacia, stress fracture of the patella,
straighter. Stress fractures through the bone, causing the
Osgood-Schlatter disease, osteochondritis of the
patella to pull apart, are treated with casting until healing
patella)
occurs.
The patella is the kneecap. Patellar pain, or pain in the front Instability of the patella may be caused by a combina-
of the knee, occurs in children with cerebral palsy, almost tion of hamstring and quadriceps tightness, a high-riding
exclusively in those who walk with a severe crouched gait, patella (too highly placed on the knee), and torsional prob-
due to hamstring tightness. Spasticity in the quadriceps lems (external tibial torsion and femoral anteversion).
muscle may also be present. Pain may be due to chondro- Therapy to stretch and strengthen muscles should be at-
malacia (excessive pressure behind the kneecap), stress tempted Wrst but is often unsuccessful in the child with
fracture of the patellae, osteochondritis of the patella, and cerebral palsy. Chronic instability causing pain should be
uncommonly, from instability (dislocation) of the patella. treated surgically by correcting the causes above if they are
A child with a crouched gait stands with knees bent; the present.
muscle in the front of the knee and kneecap is extremely
tight, allowing him to stand. However, the large amount
of pressure against the kneecap causes pain; if the pressure
Pelvic Osteotomy
is great enough, it may cause a stress fracture through the (Chiari osteotomy, Salter osteotomy, Pemberton
bone and actually pull the patella apart. This pain can be- osteotomy, Dega osteotomy, acetabular shelf
come quite severe, and if not treated properly may prevent procedure)
the child from walking. This is especially true for children
The pelvic bone may be cut in a number of places, usually
who develop stress fractures of the patella or signiWcant
with the goal of redirecting or reshaping the acetabulum,
stretching of the tendon.
which is the cup or socket part of the hip joint.
Indications: This procedure is performed on chil-

Painful pressure dren with spastic hip disease because the socket is de-
on patella
in tight formed from abnormal pressure and has not developed
patellar normally. The socket needs to be reshaped in order to pro-
ligament vide better coverage if the hip is to stay in the socket.
The surger y: A variety of procedures have been de-

Quadriceps
femoris muscle veloped (each named after the person who developed it),
but each surgery involves making a cut in the pelvis above
the hip joint socket, or the acetabulum. BrieXy, the Chiari
osteotomy involves cutting just above the socket straight
across the pelvis and then sliding the pelvis in and allow-
ing it to heal with a ledge over the socket. The Salter os-
teotomy involves a cut at approximately the same location,
Osteochondrosis of the patella occurs if the tendon at
but instead a wedge of bone is placed into the cut in the
the insertion in the patella pulls oV. A similar situation, an
pelvis and the pelvis is rotated forward. This operation is
inXammatory response called Osgood-Schlatter disease,
done for congenital hip dislocation but is not indicated for
occurs where the patellar tendon hooks onto the tibia.
patients with cerebral palsy.
These are common problems in active, growing adoles-
A Pemberton osteotomy involves a cut made in the
cents, and especially as well in children with cerebral palsy
front of the socket, which is then bent down and held in
and spasticity. As the child continues to grow, both of
place with a block of bone. This procedure may be used
these conditions eventually resolve if the stress is not too
for children with cerebral palsy, but is more commonly
high.
used for children with congenital hip dislocation. The
Care and treatment: The treatment of a crouched Dega osteotomy is similar to the Pemberton, except that a
gait, osteochondritis of the patella, and Osgood-Schlatter cut is made halfway through the pelvis around the whole
disease involves stretching the hamstrings in an attempt socket and the whole upper half of the socket is folded
to get the child to stand up straighter and place less strain down and held with a wedge of bone. This procedure re-
on the knees. If the knees cannot be adequately stretched sults in a useful reduction in the size of the acetabulum,
434 ♦ perseveration
Chiari Pemberton
Dega Shelf
and the acetabulum continues to grow well. The acetabu- oped. If no cast is used, full activity is usually resumed by
lar shelf procedure involves placing bone chips at the edge 4 to 6 weeks after surgery.
of the socket in an attempt to build a bigger socket. This
What to expect: There may be diYculty in healing
may work well in children who are older, but if it is done
after the Chiari and Salter osteotomies, and the shelf pro-
on very young children it will completely stop the growth
cedure may be absorbed by the child’s body or may destroy
at the edge of the socket, causing the child to outgrow the
growth so that there is no further improvement after the
socket.
operation. The Pemberton and Dega procedures may
After-surger y care: For those pelvic procedures cause the joint to fracture or the bone wedge to be dis-
that cut completely across the pelvis, such as the Chiari or placed. Generally, however, one can expect that the socket
Salter osteotomies, postsurgical treatment usually requires will successfully hold the ball of the hip joint.
a hip spica cast. The acetabular shelf procedure requires
healing to develop strength because the bone is not strong
initially; therefore, it usually requires a cast as well. The Perseveration
Pemberton and Dega osteotomies can easily be done with- When an activity is repeated over and over, it is called per-
out using a cast. If no cast is used, the child may return to severation. Perseveration is a common symptom in chil-
full weightbearing for walking or to full physical therapy. dren with mild to moderate mental retardation, who may
Casts, when used, are needed for 6 to 12 weeks, followed become Wxated on one concern and continue to pursue
by extensive physical therapy because stiVness has devel- and talk about only that. This can be an annoying problem
pneumonia / pressure mapping ♦ 435
for caregivers. Behavior modiWcation techniques that fail Porencephalic Cyst

to reward the child for continued perseveration should be
attempted as a form of treatment. This involves verbally A porencephalic cyst within the brain results from the
disciplining the child to stop that focus, and then redirect- breakdown of dead brain tissue. These cysts usually result
ing his or her thoughts to a diVerent activity. from an acute trauma to the brain, such as a stroke or an in-
fection, during late fetal or early infant life. Sometimes
they cause no problems at all, and the child develops nor-
Pneumonia mally. Other times they can cause neurological deWcits lo-
calized to one limb or side. Porencephalic cysts are quite
Pneumonia, or pneumonitis, means inXammation of the
common in children with cerebral palsy. These cysts some-
lung, primarily caused by infection. The diagnosis of
times progressively enlarge and eventually impinge on the
pneumonia is usually a clinical one, with fever, increased
ventricles (the Xuid cavities) of the brain, causing hydro-
respiratory rate, retractions of the chest wall muscles, and,
cephalus, which is the increased accumulation of cere-
if measured, a drop in the oxygen saturation in the blood.
brospinal Xuid within the ventricles. Shunt surgery may be
Often a chest x-ray is done to conWrm this clinical impres-
indicated in the unusual circumstance that porencephaly is
sion. The infection is most commonly either viral or bac-
causing abnormal enlargement of the head and progressive
terial, though some cases of infectious pneumonia can be
loss of motor skills.
caused by fungi. In children with CP, many cases of pneu-
monia are caused by aspiration of material from the throat,
causing either infectious or chemical pneumonitis. Prematurity
Most of the pneumonias in infancy are of viral origin.
Bacterial infections are treated with antibiotics, whereas The normal gestational period is considered 40 weeks
viral infections usually are not. Aspiration pneumonia is from the Wrst day of the mother’s last menstrual period. By
usually treated with antibiotics to prevent either a primary deWnition, normal gestation can vary by two weeks, that is,
infection caused by whatever was aspirated, or by a super- anywhere from 38 to 42 weeks. Prematurity is deWned as
infection, which is a bacterial infection that follows injury birth before 38 weeks. Many children with cerebral palsy
to the lung caused by the aspiration. were born prematurely. Being born prematurely puts the
Children with CP, who also have problems with their child at risk for a variety of medical and neurological prob-
swallowing, are much more likely to aspirate their own lems. However, with the improved care for premature in-
saliva, food that they are eating, or stomach acid and food fants that is delivered in intensive care nurseries, many of
that may be reXuxing from their stomach. The resulting these problems are now rare except in the smallest of pre-
pneumonia can be quite severe, but sometimes children mature babies. Those born between 24 and 32 weeks of
have mild subclinical symptoms on a chronic basis, such as gestation are at the highest risk for CP, attention deWcit dis-
chronic wheezing or congestion without typical symp- order, and various learning disorders, with the most im-
toms of fever and respiratory distress. mature infants at the greatest risk.
If the child is not having severe respiratory distress, he
or she can often be treated as an outpatient with oral an-
tibiotics if there is a suspicion of bacterial infection. If the
Pressure Mapping
pneumonia is felt to be viral, such as that caused by inXu- Children who do not have normal movement ability often
enza or RSV, then antibiotics are of no help and treat- develop pressure sores, also called bedsores or decubitus
ment is of the symptoms alone, such as Tylenol for fever ulcers. This skin breakdown occurs because of too much
and nebulized medications for wheezing. For children pressure over too long a period. A tool that is used to de-
with more signiWcant respiratory symptoms, admission to termine where this high pressure is coming from is the
the hospital and treatment with intravenous antibiotics is pressure-mapping mat. This is a soft mat or blanket with
often necessary, and for severe respiratory distress some sensors embedded in it to measure the pressure when the
children may end up in the intensive care unit on a venti- child sits or lies on it. The mat is attached to a computer,
lator. While an acute episode of pneumonia can happen to which shows an image of the contact area and measures the
any child, a history of two or three such episodes in a child amount of pressure in any small area.
with CP would make one very suspicious that the child is The pressure mat can be used in a wheelchair to see
aspirating and needs some investigation to see if there is ei- whether there is a problem with the seat back or the seat
ther severe reXux or aspiration of food or secretions from that is causing the skin ulcer. It can also be placed under the
the mouth. child while the child is lying to see if the pressure is caused
436 ♦ psychological evaluation / rectus femoris transfer
responses reXective of their knowledge or problem-solving

capabilities. This makes it diYcult to ascertain whether a
weakness is due to a cognitive or an output deWcit. Further
complicating testing with children with cerebral palsy is the
way that tests are normed. Standardized norm-referenced
assessment measures require a “standard” administration
to allow comparison with appropriate age norms. While
many children with cerebral palsy have adequate expressive
language capabilities and motor skills, others do not and
require modiWed testing activities. This makes some psy-
chological Wndings diYcult to interpret. Yet, with a skilled
evaluator, many assessment measures can be “adapted”
to provide a reasonably reliable and valid indication of a
child’s capabilities. For example, nonverbal measures of
reasoning and problem solving can be utilized when there
is limited speech output. Many of these measures also al-
low for creative administration methods and response
modes, so that the clinician has a better understanding of
a child’s capabilities. In addition to nonverbal assessment
techniques, evaluators can choose test measures that allow
by a speciWc position. Pressure mapping is an important pointing, multiple choice formats, voice output devices,
part of the treatment of pressure sores, since the goal of or other forms of technology. Sometimes having a child’s
treatment should be not only to heal the sore, but also to teacher, aide, or parent participate in the evaluation makes
determine what caused it, and hopefully prevent it from for the most comfortable environment in which the child’s
happening again. skills can be demonstrated.
Psychological Evaluation Quadriplegia

Psychological evaluations typically include various testing (pentaplegia, total body involvement)
activities, an interview with parents or guardians regarding The term quadriplegia is used for children with cerebral
a child’s history, and direct observations. Teacher inter- palsy when all four limbs are involved, with diYculty in
views, behavioral/social-emotional rating scales, develop- motor control and tone imbalance. Occasionally, the term
mental questionnaires, and a review of relevant medical pentaplegia is used for those people who also have signiW-
and/or educational records are also often completed. Test- cant diYculty with motor control of the face or head. An-
ing activities can involve a variety of problem-solving tasks other commonly used term is total body involvement,
including answering questions, hands-on activities, using which also implies diYculty with motor control of the
a computer, and paper and pencil tasks. A comprehensive face, head, and neck, in addition to the four limbs. All of
psychological evaluation could provide information re- these terms may be used interchangeably and do not have
garding a child’s intellectual abilities, learning and mem- strict independent meaning.
ory, attention and executive functioning (organization,
planning, self-monitoring, cognitive Xexibility), language,
academic achievement, motor coordination, behavioral Rectus Femoris Transfer
and emotional functioning, and/or general adaptive be- (rectus femoris release, stiV leg walk, knee
havior. extension contracture, quadriceps contracture)
Children with cerebral palsy, however, often present
with unique testing requirements. Sensory, motor, or lan- When spasticity in a child involves the quadriceps muscle
guage limitations may make it diYcult to utilize common (the large muscle in the front of the thigh), the rectus
standardized measures. For example, a child with manual femoris muscle, which lies across the front of the knee, is
motor diYculties may Wnd it diYcult to eYciently com- usually responsible. Spasticity of the rectus muscle causes
plete a timed activity requiring motor skills. Children with stiV knee. The knee can be stiV when the child walks,
limited language may Wnd it challenging to produce verbal speciWcally as he picks up his foot and attempts to bend his
reflexes ♦ 437
Tight rectus
femoris muscle
attached to Sartorius
front of knee muscle
Rectus femoris
muscle
Stiff leg gait
knee to swing the foot forward, which causes a stiV-legged to the outside of the knee to control rotational problems of
gait; or the knee may be completely incapable of bending, the legs; the outcome of this procedure is unpredictable—
causing diYculty sitting. If someone is unable to bend the though it is generally unsuccessful. This same procedure is
knee in order to sit in a wheelchair, then the leg sticks out done for those patients who have diYculty bending the
in front. knee enough to sit. Some severely involved patients re-
quire lengthening the three muscles underlying the rectus
Care and treatment: Initially, treatment for spastic-
muscle; this should be done if the knees do not bend.
ity of the rectus muscle should involve stretching exercises,
which frequently aid problems with seating. However, BeneWts and risks: The major beneWt lies in reduc-
walking typically does not help in stretching this muscle ing spasticity in the rectus muscle. The complications from
when it is tight. Surgical lengthening or transfer of this this surgery are minor, and the risk of overlengthening to
muscle is the most common treatment of this problem, but the point of developing the opposite deformity is minimal.
it is usually not an isolated procedure. Instead, it is part of Treatment after this surgery may involve the use of a cast
a number of other surgical procedures that improve the for two to four weeks; alternatively, no casting may be
gait or the ability to sit. used.
The surger y: The procedure is done at the knee; it

involves deWning the rectus muscle and separating it from ReXexes
the three other muscles. It may simply be lengthened and
(normal postural reXexes, primitive reXexes, deep
allowed to slide; however, the muscle usually reattaches
tendon reXexes)
and becomes a problem again. Instead, the operation
should involve transferring the muscle to the inside of the The function of the central nervous system with respect to
thigh and attaching the tendon to the sartorius or semi- motor behavior is coordinating the ability to move while
tendinous muscles. This transfer helps the hamstrings to maintaining posture and equilibrium. Every movement
bend the knee. Some surgeons transfer the rectus muscle and change in posture produces a shift in the relationship
438 ♦
Palmar grasp reflex
Moro reflex
Tonic labyrinthine reflex (supine)
Crossed extension reflex
Asymmetric tonic neck reflex
Symmetric tonic reflex Placing reflex

rehabilitation ♦ 439
of the body to the ground. Therefore, if we are not to fall, normal and may indicate developing hemiplegia. Discrep-
there must be a Xuctuation of tone throughout the mus- ancy between upper and lower extremity activity may aid
culature to maintain our balance while moving. These in the subclassiWcation of cerebral palsy.
changes and patterns, known as normal postural reXexes, Deep tendon reXexes are stretching reXexes in which the
are brought about automatically. These reactions can be muscles are suddenly stretched by a sudden tap with a
grouped as righting reactions and equilibrium reactions. Wnger or rubber hammer. In a medical examination, these
Righting reactions are automatic but active responses— reXexes are tested at the knees, ankles, elbows, and wrists.
they maintain the normal position of the head in space and In people with cerebral palsy, the reaction is typically
the normal alignment of the head and neck with the trunk stronger than normal.
and of the trunk with the limbs. Equilibrium reactions re-
store balance through complex responses to changes of
posture and movement. They show themselves in slight Rehabilitation
changes of tone throughout the muscles and by visible (continuum of care)
counter movements to restore the disturbed balance. These
reactions are needed to maintain balance and thus to Rehabilitation means teaching a child to regain a function
achieve, Wrst, sitting balance, and later the ability to stand that he formerly had, such as the ability to walk or to per-
and to walk. form activities of daily living. Teaching a new activity is
In the child with cerebral palsy, the delay or interfer- technically called habilitation, although when speaking of
ence with the development of these reactions causes delay the care of children, habilitation and rehabilitation are not
in achievement of these motor abilities. The three main usually separated. Rehabilitation may take place inside or
reasons for the delay in the appearance of the righting outside the hospital. Hospital stays for rehabilitation pur-
and equilibrium responses are the persistence of primi- poses generally last between two and six weeks. In the hos-
tive reXexes past the age at which they are normally pres- pital, the child is handled by an integrated team involving
ent, the presence of a primitive reXex to an abnormal de- a physician trained in rehabilitation (usually a physiatrist),
gree, and the presence of hypotonia (low tone). All three physical, occupational, and speech therapists, and specially
factors are present to some degree in cerebral palsy. The pos- trained nurses. Rehabilitation is oVered in a continuum
tural reXexes do not usually appear until the latter half of from hospital, to outpatient, to school, and Wnally and
the Wrst year, that is between 6 and 12 months of age. They most importantly, to the home. Therapies are given as
include the neck-righting reaction and the labyrinthine- close to home as is medically possible.
righting reaction, among others. The parachute reaction is Indications for inpatient rehabilitation include a recent
an equilibrium reaction that is often looked at clinically, illness or injury which acutely alters a child’s capabilities
because it is delayed or asymmetrical in cerebral palsy. (The for function, or when there are new medical issues that
parachute reaction is what should happen when the child need to be sorted out. Goals might include feeding tech-
is thrust head Wrst toward the examining table: she should niques, teaching parents the new care needs of their child,
extend both arms in front as if to break the fall.) attention to safety in the environment, and mobility.
Primitive reXexes (see pages 438, 440–1) are essentially There are beneWts from inpatient rehabilitation imme-
brainstem-mediated responses that develop during fetal diately after some surgical procedures, such as dorsal rhi-
life and are present at birth. The majority of them disap- zotomies and some orthopedic procedures, because the
pear between 3 and 6 months of age. At any age, if a prim- child needs intense physical therapy to regain and maxi-
itive reXex is obligatory, it is always considered pathologi- mize function. This may be done with the younger child,
cal because it signiWes the presence of a motor disability, even as young as 2 or 3 years of age, though it may be very
most likely cerebral palsy. A primitive reXex is described as diYcult emotionally for such a young child to be left by a
obligatory if the reXex is sustained for more than 30 sec- parent for several weeks.
onds and head movements control both upper and lower There are also speciWc special needs that may be best
extremity positioning, with the child unable to break out addressed on the inpatient unit, such as the need for high-
of the pattern, even with crying. Absence of reXex activity at technology communication aids and mobility aids. The fo-
a time when it is normally present is also an important in- cus is not only on the child performing the activities them-
dicator: it may reXect generalized hypotonia that could be selves, but also on teaching the parents to direct their care.
secondary to severe central nervous system dysfunction. In recent years, more and more programs have devel-
Asymmetry of these reXexes (that is, an abnormal reXex on oped outpatient or day programs that provide compre-
one side of the body and a normal one on the other) is ab- hensive physician-directed rehabilitation. Length of stay
440 ♦
Table 10 Primitive ReXexes (see page 438)

Brief Description
Age at Which Normally
Name How to Elicit Response Appears and Disappears
Moro Place the infant in the supine Extension followed by abduction of Birth–5 months
position (on the back); lift by the the arms with partial Xexing of the
arm, raising the head a bit oV the elbows, wrists, and Wngers.
table, and then let go.
Tonic Extend the infant’s head and neck The shoulders retract, resulting in Birth–9 months
labyrinthine 45 degrees in the midline by Xexion of the arms. The legs also
placing a hand between the assume a slight extensor posture.
shoulder blades. Two types of obligatory responses
are always abnormal: the
“decorticate” posture, in which
there is primarily shoulder
retraction with Xexion of the arms
at the elbows, and the “decerebrate”
posture, where the arms assume full
extension and pronation.
Asymmetric Turn the head 45 degrees to the The arm on the chin side will go Birth–6 months
tonic neck right or left side while the infant out into extension, while the arm
(ATNR) is in the supine position. on the other side (facing the back
of the head) becomes more Xexed.
This is known as the fencing
reaction. The legs may assume a
similar posture to a lesser extent.
Symmetric tonic (a) With infant held in sitting (a) Upper extremities extend Rarely present in normal
neck (STNR) position, extend the neck outward and legs Xex. children; may be seen
backward. intermittently until 4–6
(b) The arms Xex and the legs months in some normal
(b) With infant held in sitting extend. children
position, Xex the head.
Crossed Apply a noxious stimulus such as The other leg Wrst Xexes, followed Birth–2 months
extension a pinch or a pinprick to the sole by adduction (crosses over toward
of one foot while holding that the other leg), and Wnally extension
leg in complete extension. as if to push away the noxious
stimulus.
Stepping reXex Hold the infant in vertical While the second foot is Xexing Birth–6 weeks
position and touch the sole of and adducting, the examiner
one foot to the ground or immediately turns the infant so that
tabletop. The other foot Xexes, when extension occurs that foot
adducts, and extends. receives the weight, thus producing
a walking or stepping response.
Palmar and Put pressure on palm of hand or Hand grasps and holds; foot Xexes Hand: Birth–3 months
plantar grasp sole of foot. and grasps. (blends into voluntary
activity)
Foot: Birth–9 months
Upper placing Press the back of the hand The hand is initially lifted above the 3 months–no stated age.
against the edge of a table. extension of the arm, thus placing These reXexes gradually
the hand on the tabletop. merge into volitional
behavior, and
disappearance can’t be
easily assessed.
Continued on next page

retinopathy of prematurity / rubella ♦ 441
Table 10—Continued
Lower placing Press the top of the foot against The leg initially Xexes and then Birth–no stated age.
the edge of a table while holding extends, “placing” the foot on the These reXexes gradually
the infant upright. tabletop. merge into volitional
behavior, and
disappearance can’t be
easily assessed.
Positive support Hold the infant in a vertical Three Wndings are possible: Birth–no stated age.
position under the arms with (a) absence of any response; These reXexes gradually
head in the neutral position. (b) momentary extension of the merge into volitional
Bounce the child 3–5 times on legs, thus supporting the weight behavior, and
the balls of the feet. momentarily, followed by Xexion; disappearance can’t be
or (c) full extension, thus easily assessed.
supporting the body weight.
for inpatient programs has decreased, and children often Rigidity

Wnish their acute rehabilitation as outpatients. Some chil-
dren return for a few weeks of outpatient care each year, The term rigidity is generally synonymous with stiVness.
rather than being hospitalized away from their family. Some children with cerebral palsy become very stiV, espe-
Children do better sleeping in their own beds and coming cially in the joints. This stiVness can be due to spasticity, in
in to a center for their therapies. Such centers need to have which the muscles pull extremely tightly but then suddenly
a strong multidisciplinary program, which addresses the relax. If the stiVness does not suddenly relax but slowly
unique needs of the child living at home. The program re- stretches out, with the feeling of bending a lead pipe, then
mains in close contact with the school, and at the appro- the correct term is rigidity. There are other conditions in
priate time, the child resumes their program in their own which rigidity occurs, more speciWcally arthrogryposis,
school. which is the Wxation of a joint in a Xexed or contracted po-
Rehabilitation involves partnership between the child, sition. Some children with cerebral palsy have rigidity as
the family, and rehabilitation specialists, with the goal of a main component of their motor problem; however, it
maximizing the child’s function in their own community. more commonly becomes a mild but common feature in
early adulthood of individuals with severe spasticity.
Retinopathy of Prematurity
Rubella
(Retrolental Fibroplasia, ROP, RLF)
(German measles)
Retinopathy of prematurity (ROP) was previously known
as retrolental Wbroplasia (RLF). It is a condition seen pri- Rubella, or German measles, is a viral illness that causes
marily in premature infants exposed to high concentra- mild symptoms in adults or children. When pregnant
tions of oxygen and is one of the leading causes of blind- women are infected, however, the virus causes very severe
ness in the United States in young infants, especially infants deformities in the fetus. Congenital rubella in the past had
who have cerebral palsy because of prematurity. It leads to been a common cause of severe quadriplegic pattern cere-
varying degrees of abnormality of the retina, the severest bral palsy. Common symptoms of congenital rubella may
form of which can lead to total retinal detachment and include microcephaly, cataracts, small eyes, deafness, heart
blindness. defects, and mild to severe retardation.
When ROP was Wrst discovered, medical professionals The congenital rubella syndrome has nearly disap-
believed that limiting oxygen exposure would prevent this peared over the past years with the use of rubella vaccine to
condition, but as more premature and smaller infants are immunize pregnant women against German measles. Un-
surviving, it is becoming clear that ROP can develop even fortunately, some women are now reaching childbearing
in infants in whom oxygen concentration in the blood is age without having been immunized. If they are infected
well controlled. Various modes of treatment have been at- during their pregnancy, their infants may have the defor-
tempted to prevent the severest form (that is, retinal de- mities listed above. All children should be immunized
tachment), including cryotherapy and laser treatments. against rubella, both to prevent their spreading it to preg-
These have improved the visual prognosis. nant women who might be exposed to them and, for girls,
442 ♦ scoliosis
to prevent their becoming infected when they are old

enough to become pregnant.
Scoliosis
(posterior spinal fusion, anterior spinal fusion,
Harrington rod, Cotrel-Dubousset [CD] rod,
Luque rod, unit rod, Zielke rod, Dwyer
instrumentation, TSRH instrumentation)
Scoliosis is a side bending of the spine that occurs in many

diseases. The type of scoliosis a person has is dependent on
the cause. It is important to recognize that scoliosis result-
ing from one cause has very little relationship to scoliosis
resulting from another cause. Scoliosis is a symptom or the
eVect of some underlying disease process, just as abdomi-
nal pain, nausea, or vomiting are symptoms of underlying
problems in the abdomen that may range from stomach ul-
cer or gallbladder problems to appendicitis. For the condi-
tion to be resolved, the treatment must be directed to the
cause.
The incidence of scoliosis in children with cerebral
palsy varies. It is uncommon in children with hemiplegia
but slightly more common in patients with diplegia. The
incidence for these two groups varies from 1 in 100 to 1 in
1,000. There may be some overlap because having cerebral
palsy does not preclude also having idiopathic scoliosis, curve combines with stiVness or resistance of the curve,
and it may be diYcult to separate the two in some patients. and the spine no longer straightens out when the child lies
The predominant group of children who develop scoliosis down. This is now termed structural scoliosis, and is the type
are the children with total involvement quadriplegia, and that continues to get progressively worse.
speciWcally those children who are unable to walk. The se- There was a time when doctors believed that apply-
verely involved children have a 75 to 85 percent chance of ing body braces would help to prevent the progression
developing severe scoliosis, which requires treatment. or development of scoliosis in children with cerebral
Scoliosis in children with cerebral palsy is caused by palsy. The general consensus now is that braces have no
poor muscle control, poor coordination, or asymmetrical impact in either delaying the time at which the scoliosis
muscle pull. The muscles in the spine function to keep the develops or aVecting the curve’s severity. For this reason,
spine straight, similar to the guide wires around a radio there is no reason to prescribe spinal braces with the goal
tower which keep the tall, slender tower standing straight. of treating the scoliosis. A brace made of a soft foam-
Initially, the scoliosis in young children with cerebral palsy like material can be used to help with sitting posture
(between the ages of 2 and 8) is postural. At this age, when only in smaller more Xexible scoliosis curves. However, it
children sit up and do not have postural control they bend should not be expected to actually keep the curve from
one way one time and in the opposite direction the next worsening.
time. This scoliosis should be of very little concern, since it As the scoliosis gets worse, sitting often becomes much
is Xexible, and as soon as the children lie down their spines more diYcult. Wheelchair modiWcations need to be made,
straighten out. and soon a large degree of pelvic obliquity develops, so
During the adolescent growth spurt, which occurs be- that the child sits only on one side of the pelvis or hip. If
tween the ages of 8 and 14, the spine becomes much longer, the scoliosis becomes worse, the pelvis slips inside the
and it is then that the side bending develops a more per- chest cage and the ribs start causing irritation as they rub
manent structured curve, so that the child starts to bend against the pelvis. This is usually the condition that causes
only on one side. The spinal vertebrae at this time not only pain. As the scoliosis gets worse, it becomes more diYcult
bend sideways but also rotate and start to stiVen into place. for the abdominal muscles and diaphragm to work, which
During this period of adolescent growth, an increasing makes breathing more diYcult. Scoliosis that becomes
scoliosis ♦ 443
very severe can aVect the blood Xow through the lungs and Indications: The indications for a posterior spinal
cause heart problems. There may be diYculty with the fusion involve consideration of the child’s remaining
swallowing mechanism and with stomach function. As the growth as well as the severity and stiVness of the curve. For
scoliosis continues to progress and becomes very severe, a child who still has a lot of growth remaining, the curve
sitting for any period of time becomes diYcult. Frequently may be allowed to progress further up to 90 degrees if it is
there are only one or two positions in which lying down is not too stiV, because after the posterior spinal fusion is
comfortable. performed spinal growth will stop. This is usually not of
Other types of scoliosis include idiopathic scoliosis, major concern, since at most the procedure will remove an
congenital scoliosis, and the scoliosis associated with mus- inch or two from the child’s ultimate adult height. The
cular dystrophy. The most common of these is idiopathic posterior spinal fusion is usually performed when the child
scoliosis, which occurs predominantly in preadolescent or is between the ages of 10 and 15. It is best to avoid having
adolescent girls. Scoliosis in children who do not have the curve become very large, and especially very stiV, be-
cerebral palsy is treated very diVerently from scoliosis in cause this will necessitate two operations.
children with CP. Scoliosis screening is used to attempt to If the decision is made to proceed with a spinal fusion,
identify the idiopathic form early in the normal child. The the goal should be to correct malalignment so the child
exact causes of idiopathic scoliosis are unknown. Idio- will sit straight with a normal appearance. There is very
pathic scoliosis is the type for which body braces and jack- little place today for the type of spinal fusion whose only
ets are prescribed to prevent the further progression of the goal is to prevent the scoliosis from progressing, since the
curve. This type of scoliosis is also treated with a spinal fu- child who sits all the time needs to be placed straight up-
sion when it becomes suYciently severe that the risk of the right with the pelvis and shoulders in a parallel position.
curve’s progression into adulthood is anticipated. Cur- Current technology allows this to be performed without a
rently, the spinal fusion instruments used for this type of great deal of diYculty; generally, spinal curves between 60
scoliosis are the Cotrel-Dubousset (CD) rod or the TSRH and 90 degrees are considered candidates for fusion in chil-
instrumentation, involving placing rods in the back of the dren with cerebral palsy.
spine with multiple hooks and fusing the spine over the
The surger y: The operation usually takes approxi-
area of the scoliosis. A similar design utilizing only two
mately four hours to complete, and the patient often needs
hooks is called a Harrington rod and has been used for
to spend time on a ventilator and in the intensive care unit.
many years, but is less sturdy and requires more postoper-
This is a major operation that often requires a signiWcant
ative support.
amount of blood to be transfused, frequently one to two
Care and treatment: For treating scoliosis in chil- times the child’s blood volume. The second or third day af-
dren with cerebral palsy, the choice is between a posterior ter surgery, the child sits up in a wheelchair. Braces or casts
spinal fusion and no treatment at all. The latter means ac- are not necessary with modern instrumentation systems
cepting the consequences of the scoliosis. Other treatments such as Luque rods or unit rods. Luque rods are two single
such as exercises, therapy, braces, and manipulations have rods wired together on each side of the spine. The unit rod
no impact on the outcome. is very similar, except it is one continuous rod or two rods
If the scoliosis is permitted to develop naturally, there solidly connected; it is a better means of correcting the sco-
is no certainty that it will become severe enough to prevent liosis and controlling rotation of the spine.
sitting, although this does occur in the majority of cases. If
BeneWts and risks: After the fusion, the child may
the patient is in an institutional care facility, then keeping
be handled in the same way as before surgery. Frequently
him on his back, but with frequent changes of position so
parents Wnd handling their child much easier after surgery
that bedsores don’t develop, may be a reasonable alterna-
because he is straight, can sit much better, and is stiV in the
tive. One also needs to consider that some loss of respira-
midsection. SigniWcant complications and risks associated
tory and gastric function may occur.
with the spinal fusion include a very large blood transfu-
For those children who can see well enough to watch
sion, which brings with it the small risk of contracting an
television or to interact with their peers or family mem-
infection. The large amount of blood needed in debilitated
bers, a full-time reclining position makes such activities
patients usually means they are not able to donate their
diYcult, if not impossible. It also makes feeding, as well as
own blood. Infection of the back is also a possible compli-
respiratory care and function, more diYcult. In addition,
cation, but is fairly easy to treat and does not generally aVect
transporting the child as well as having him take part in
the outcome. Injury to the spinal cord is a possibility, espe-
functions outside the home becomes diYcult, if not im-
cially when the curve is severe. For the experienced spinal
possible.
444 ♦ seizures / spasticity
surgeon, this risk should be quite small. A complication or experience. For example, as a child moves her arms or
that is seen fairly commonly after a posterior spinal fusion legs she is able to perceive this movement by the positional
is pancreatitis. This inXammation of the pancreas can cause senses that are present in the limbs. Also, as a child grasps
abdominal pain, abdominal distension, and vomiting. It an object she can perceive its shape and the weight of the
can result in signiWcant delays in being able to resume feed- object in her hand.
ing through the stomach, making intravenous nutrition the The sensory feedback that is necessary for sensorimo-
only route for calories for days to weeks after the surgery. tor perception is often diminished in children with cere-
Many children with CP who undergo a spinal fusion bral palsy. In addition, their inability to move in space in
are slender with very little body fat, and marginal nutrition the way a nondisabled child of the same age moves further
can make healing large surgical wounds diYcult. It is ben- diminishes this experience. A caregiver often discovers just
eWcial to increase feeding prior to surgery in order to have how much diYculty a child with CP has when trying to
the child gain weight. Immediately after surgery, the child teach the child to operate a motorized wheelchair. The
needs nutritional support. Either the use of intravenous deWcit will often be more noticeable in wide-open areas
total nutrition through specially placed IV lines or placing outside, such as moving along a sidewalk, than it will be
feeding tubes into the intestines is a way of starting extra within the narrow conWnes of a hallway or a small room. In
feeding almost immediately after surgery. This is especially narrow areas the child has learned to perceive movement
important for those severe curves that require surgery in based on her eyes alone, but this is more diYcult in wide-
the front of the spine. After this operation, which is a much open areas, where additional feedback is required. This
smaller procedure, it may be a week before the posterior deWciency can be overcome with practice and training in
spinal surgery is done. If great care is not taken with nutri- the use of the power chair—gradually the child incorpo-
tion, the child may go 10 to 14 days without adequate in- rates the available sensorimotor experience into a func-
take, a length of time that a slender child is not able to tol- tional mechanism for perceiving the body’s movement in
erate. Frequently, this type of child develops complications space.
such as poor wound healing, infection, or pneumonia.
What to expect: After surgery, parents usually need Spasticity

to plan for approximately four weeks out of school, as two
(spasm)
weeks is the average stay in the hospital for a child under-
going a posterior spinal fusion. For those who need both When muscles contract involuntarily or because of an ac-
front and back surgery for severe scoliosis, three weeks in tivity such as a stretch, this action is said to be a spasm.
the hospital, and another week or two at home, will be nec- When these involuntary contractions are persistent and
essary. Following the surgery no special care is needed, and cannot be voluntarily stopped, the child is said to have
the child may start standing or even walking if he is able. spasticity. When a caregiver attempts to move the child’s
joints, they appear to be stiV; however, with gentle stretch-
ing, the muscles suddenly relax. This form of stiVness
Seizures caused by spasticity is substantially diVerent from that
(epilepsy) caused by rigidity, which is a related term. With rigidity,
the muscles do not suddenly relax and free the extremity
The brain normally has electrical activity going on within but remain stiV, regardless of any attempts to move the
it in a controlled manner. A seizure is a sudden “out of con- joints.
trol” event that can cause involuntary movements and/or Spasticity is present in children with spinal cord in-
behavior changes, and changes in awareness. It occurs juries, occasionally in those with spina biWda; it may also
when there are bursts of abnormal electrical activity in the develop with some other nerve conditions such as multiple
brain, which interfere with normal brain functioning. sclerosis. In the infant with cerebral palsy, spasticity is sel-
Epilepsy is a group of disorders, characterized by recurrent dom signiWcant in the Wrst 6 months, but sometime be-
seizures. Epilepsy is not a disease. tween 6 months and 24 months, it starts becoming appar-
ent. Initially, the child may be very Xoppy, but spasticity
Sensorimotor Experience may develop with maturity. Proper positioning and pos-
tural control can decrease spasticity to some extent.
(sensorimotor perception)
Care and treatment: Treatment of spasticity in-
The ability to perceive and feel the movement of a limb as volves many diVerent options, from nerve injections and
certain muscles are activated is a sensorimotor perception
speech therapy / spinal fusion ♦ 445
medications to several surgical procedures. Medications component may also involve evaluating the child to see if
used are of the diazepam family, Lioresal, Tizanidine or she or he is capable of using means of communication other
Dantrium. The side eVects of each of these medications than oral speech, such as electronic computerized devices,
when given by mouth, especially drowsiness, make them un- symbol boards, hand speech, or eye communication.
suitable for continuous use in children with cerebral palsy.
Indications: Speech therapy is recommended for a
An exception is the use of an intrathecal Baclofen pump.
child who is having diYculty with feeding, especially diY-
Treatments that are directed at the nerves involve in-
culty with swallowing, or for a child who is having diY-
jections with botulinum toxin. The eYcacy of these treat-
culty speaking clearly or speaking at all.
ments is limited because their eVects don’t last. Nerves
may be surgically sectioned or crushed, but spasticity may BeneWts and risks: There are several beneWts of speech
recur in spite of this deliberate damage unless very large therapy: the valuable assessment that may determine the
nerves are destroyed. speciWc cause of the child’s feeding and communication
A dorsal rhizotomy is another surgical treatment, in problems; the instruction and education provided to the
which the nerves as they exit from the spinal cord are iden- caregiver; and the techniques that may help the child to eat
tiWed and the ones found to be most involved with the more easily and safely and to communicate with those
spasticity are cut. The result is a great decrease in spasticity, around her. There are no expected risks with therapy.
at least for a short period of time. However, the long-term
implications of this procedure are still uncertain. Another Maintenance: Speech therapy usually requires re-
option is that speciWc muscles whose spasticity is causing peated evaluation, because feeding, swallowing, and speak-
problems may be lengthened, released, or occasionally ing have a tendency to change as children mature. Often
transferred; however, care must be taken that the antago- their abilities improve as they get older, but for some chil-
nistic muscles are not also spastic, because the opposite de- dren swallowing diYculties may get worse during their
formity could then develop. adolescent growth spurt, and monitoring by a speech ther-
apist is important during this period.
Speech Therapy
(feeding therapist)
Spinal Fusion
(posterior spinal fusion, anterior spinal fusion)
Speech therapy is the professional discipline whose practi-
tioners diagnose and treat problems of the oral motor sys- A spinal fusion involves roughening the bone surfaces and
tem including feeding and speech issues. In the child with removing the joints to allow the individual vertebrae to
CP, they often evaluate the mechanical process of eating, heal together; a fused spine becomes in essence one long
which involves understanding how the mouth handles bone. The area that is fused can no longer move, and once
food, in what positions a child is best able to control the this has healed, it lasts an entire lifetime. The most com-
mouth muscles, how the food is moved in the mouth to monly performed surgery is done from the back and is
the back of the throat, and how well the swallowing mech- called a posterior spinal fusion, but the surgery may be per-
anism works. formed from the front of the spine, in which case it is called
The speech therapist often conducts a detailed exami- an anterior spinal fusion.
nation using diVerent food textures, often taking special x-
Indications: A posterior spinal fusion is indicated if
rays in order to observe the swallowing mechanism on the
a spinal curvature is worsening and becoming functionally
x-ray screen. Based on this detailed examination, the speech
unmanageable or if a curvature is certain to progress at
therapist can decide whether oral feeding is safe for the
some point and to become severe. A posterior spinal fu-
child and can make speciWc recommendations concerning
sion may be performed for scoliosis, kyphosis, or lordosis.
how to place the food in the mouth, what textures of food
For children with cerebral palsy, posterior spinal fusion al-
to use, and what position the child should be in to eat best.
most always involves inserting spinal rod instrumentation.
Speech therapists specialize in diVerent areas, so it is im-
Any procedure that does not involve the use of instrumen-
portant to be certain that the therapist who is evaluating
tation is very unlikely to provide a good result, primarily
the child for feeding problems has experience speciWcally
because it is extremely diYcult to hold the spine straight
in that area.
during the healing time. If the fusion is successful, the
The second major eVort of speech therapy is directed at
child will be fused in a very deformed position, which is
teaching phonation (how to breathe and to use the vocal
obviously not beneWcial at all.
cords to make sounds) and speech. The communication
446 ♦ s p l i n t, e l b o w
The surger y: The posterior spinal fusion involves Splint, Elbow

an incision made in the middle of the back. The bone sur-
(resting arm splint, extension elbow splint, spring-
faces are roughened and extra bone is applied, which may
loaded extension splint)
be obtained from the patient’s pelvic bone—or, with the
patient with cerebral palsy, from bone graft from the bone Elbow splints are usually made by occupational therapists
bank. The procedure is usually combined with the implan- with the goal of straightening the elbow. Many children
tation of rods to hold the spine straight and in the correct with cerebral palsy have a tendency to Xex the elbow and
position while it is healing. This surgical procedure may in- to remain in this position. The two patterns of cerebral
clude the use of Harrington rods, Luque rods, unit rods, palsy in which this is most likely to occur are severe quad-
or CD rods. riplegia and moderate to severe hemiplegia. These splints
The anterior spinal fusion is performed for very severe are usually made of plastic and are directly applied to the
scoliosis and involves removing the intervertebral discs in arm. Sometimes these splints may be made from casts that
the front of the vertebrae. This both allows much better are split in half and held together with velcro straps. There
correction and improves the ability of the spine to fuse to- is a commercially available elbow splint that has a spring,
gether. Usually, an anterior spinal fusion is a smaller oper- its goal being to stretch the tight elbow by constant pres-
ation than the posterior spinal fusion, takes less time, and sure from the loaded spring.
involves less blood loss.
BeneWts and risks: The beneWts of fusion surgery are

that it halts the progression of the curvature and straight-
ens the spine as much as possible. Complications from a
posterior spinal fusion include the possibility of infection
and the need for blood transfusions. Blood loss is usually
signiWcant in spinal fusions; transfusions are almost always
required. Permanent paralysis can occur but is very rare;
minor nerve irritations do occasionally occur but usually
resolve over several months.
Adequate nutritional intake is a problem, especially
when an anterior spinal fusion is followed by a posterior Indications: The purpose of using elbow extension
spinal fusion. The nutritional requirements of the child splints is to try to stretch out tight elbows. They should
should be very carefully watched, and often demand the keep the elbows suYciently loose to allow for cleaning and
insertion of a tube into the intestine for immediate feed- easy dressing of a child. For a child with cerebral palsy with
ing after the surgery or the insertion of an IV line in which hemiplegia, the goal may be to improve function, if some
protein, carbohydrates, and fats may be given immedi- function already exists. Although experts disagree on which
ately after surgery. Problems with seizure control are sel- splints to use and for what length of time, children with
dom encountered, although frequently parents are con- spasticity and cerebral palsy should use splints that are
cerned because sometimes their child is taking a seizure rigid and not spring-loaded. Spring-loaded splints are
medication. speciWcally contraindicated in children with spasticity be-
cause they further magnify the spasticity and cause the
After-surger y care: With most instrumentation
muscle to pull even harder.
systems, the child is usually up in a chair, in a shower, and
back to school within four weeks. For a speciWc routine, BeneWts and risks: The splint may improve the abil-
consult the section on the speciWc instrumentation that ity of the hand to function, but its main beneWt is to pre-
was utilized. vent progressive contracture. Complications from the use
of splints are primarily skin breakdown from poorly Wtting
What to expect: Children with cerebral palsy who
splints or pain that is caused by having the elbow or wrist
have a spinal fusion are usually in the intensive care unit for
stretched too tightly. Generally the splints should be com-
several days and in the hospital for approximately two
fortable and should Wt well. Any diYculty with pain or skin
weeks. They should expect to be out of school for a total of
breakdown needs to be addressed by the therapist who
four weeks, after which they should be able to return at
made the brace.
their normal level of function. There is seldom a need for a
cast or brace after this surgery, and they should be back to Maintenance and care: Most of these braces are
their normal activities of daily living within four weeks. made out of low-temperature plastics and as a consequence
s p l i n t, f i n g e r / s p l i n t, h a n d ♦ 447
need to be kept out of direct sunlight or areas that become

very warm. They should not be washed in hot water and
should only be cleaned with gentle soap. They are usually
applied directly to the skin or over a sleeve, and are used for
several hours at a time. If the child is very comfortable,
they may occasionally be worn all night.
Splint, Finger
they are often custom-made out of low-temperature plas-
(swan-neck splint)
tics or a nylon material. Alternatively, there are a number
A Wnger splint prevents hyperextension or the bending of oV-the-shelf, ready-made models that may be used.
backward of the middle joint of the Wnger (PIP joint). The
Indications: The indications for hand splints vary,
splint is made of metal and is applied very like the way one
from attempts to improve function to attempts to position
puts on a Wnger ring. Some plastic models of this splint are
the hand to prevent further contractures. The use of splints
also available.
to improve function is often not very fruitful. Generally,
when the splint is applied it covers the skin, which means
that the hand has less sensation. This lack of sensation usu-
ally leads to less use of the hand. There are certain circum-
stances in which a correctly positioned splint does place
the hand in a better position and improves function, and the
functional improvement may speciWcally allow the Wngers
to hit trip switches or to use joysticks, enabling a child to
drive a chair or manipulate a computer. These uses are very
child-speciWc and frequently require a great deal of trial
and error by an experienced occupational therapist to Wnd
the right splinting position with the right material to ben-
Indications: This splint is used primarily for patients
eWt the child. If a signiWcant attempt to try diVerent splints
with athetosis who have developed some laxity (loose-
does not improve the child’s function, then splinting ought
ness), in which the Wngers bend back over the center and
to be abandoned.
then become stuck. This causes diYculty because the Wngers
A second reason for the use of hand splints is to keep
cannot bend to grasp or pick up objects. The splints may
the hand supple as the child grows and to prevent further
be used for speciWc activities such as typing, using a joy-
contractures, which make dressing and hygiene diYcult.
stick, or picking up eating utensils, and are usually not
Resting hand splints or cock-up splints are often used.
worn full time.
Covering the hand with these splints is not detrimental if
BeneWts and risks: The major beneWt is to keep the the hand is nonfunctional. The length of time these are
Wnger from locking in the extended position. If there is too used varies greatly—from short periods of 30 minutes or
much pressure, the major risk is skin breakdown. If the an hour to all night long. The child should, however, spend
splint causes a signiWcant problem and cannot be modi- some time out of the splint each day, which is necessary to
Wed, it may need to be discontinued. keep the skin healthy and to prevent hypersensitivity. There
are no recognized or generally accepted protocols for the
Maintenance and care: The splints should be kept use of this type of splinting; instead, a parent needs to be
clean and Wtting well. guided by the philosophy and functional approach of the
physician and therapists treating the child.
Splint, Hand BeneWts and risks: If a splint is used properly, it can

(wrist splint, cock-up splint, resting hand splint, help prevent contractures and can potentially increase
functional hand splint) function by improving hand position. The complications
with hand splints occur with those used for functional pur-
Hand splints extend below the elbow across the wrist, and poses. The main problem is that they decrease instead of
are used to position the hand to prevent muscle contrac- improve function because they decrease sensation. There
tures from developing. Made by an occupational therapist, may also be discomfort or skin breakdown; the skin under
448 ♦ s p l i n t, t h u m b / s p l i t t i b i a l i s p o s t e r i o r t e n d o n
the brace should be checked daily to make certain that cause pain and discomfort from too much stress, if a physi-
there is no irritation. cian or therapist attempts too much correction. In these
cases, the splint needs to be modiWed.
Maintenance and care: Most of these splints are
made out of low-temperature plastics and as a consequence Maintenance and care: These splints are usually
need to be protected from direct sunlight and high tem- made of low-temperature plastics and need to be kept away
peratures, speciWcally hot water. They should be cleaned from hot water, direct sunlight, or other heat that may
with gentle soap. melt them. Nylon splints should not be washed, in order
to avoid damaging the material.
Splint, Thumb
(thumb-abduction splint) Split Tibialis Posterior Tendon
(STPT, tibialis posterior transfer, varus foot
Thumb splints are used to pull the thumb out of the palm, deformity, posterior tibialis lengthening, Frost
a very common deformity in children with cerebral palsy. lengthening)
These braces may either be custom-made by an occupa-
tional therapist or purchased commercially. Below the knee, the second largest and most commonly in-
volved muscle with signiWcant spasticity is the tibialis pos-
terior muscle. When this muscle is spastic or short, it pulls
the foot in and down. This spasticity is frequently associ-
ated with spasticity of the Achilles tendon. For children
who walk, the most common problem caused by this spas-
tic muscle and its contracted tendon is that the toes drag
and most of the pressure is placed on the outside edge of
the sole. Also, in some children with severe involvement, it
may cause the foot to turn almost completely sideways, so
that every attempt to stand has the child standing on the
outside of the foot.
Care and treatment: In the young child, the main

treatment for a spastic tibialis posterior muscle involves
using a molded ankle-foot orthosis (AFO) to hold the foot
Xat and to prevent it from rolling in. As the child gets
older, however, the condition usually does not resolve, and
can get so severe that the child is not able to tolerate the
AFO. At this time, surgical correction is indicated.
The surger y: The most common surgical correction

Indications: These splints have two purposes: to utilized today is the split tibialis posterior tendon transfer,
which involves taking one-half of the tendon, splitting it
improve the function of the hand and to prevent a further
longitudinally, and swinging it across the back of the ankle
deformity. The functional splint pulls the thumb out of the
over to the peroneal tendons on the outside of the ankle,
palm so that the Wngers can be used for grasping large
which pull the foot out in the opposite direction. This pro-
objects or manipulating joysticks or switches. The test of
cedure works like a bridle, so that the spastic muscle pulls
whether there is functional improvement is improved
on both sides of the ankle and generally keeps the foot Xat.
hand use. The second indication is to stretch the thumb
This correction works well, remains stable, and is usually
muscle to prevent it from contracting, so that proper
not outgrown by the child.
cleaning is possible.
Lengthening of the tibialis posterior tendon, also
BeneWts and risks: The main beneWt is preventing called the Frost procedure, is a slightly less involved sur-
further contraction: children can use their Wngers better gery; however, it has a much higher risk of over- or under-
when the thumb is kept out of the palm. The complica- correction and is frequently outgrown. Although it is still
tions associated with these splints are related to skin break- used by some surgeons, the split transfer is more common.
down from poorly Wtting splints. Some of the splints can Transfer of the entire tibialis posterior tendon is com-
stereognosis / syndrome ♦ 449
often lose this ability in the aVected hand; the loss is often
most dramatic in the hemiplegic aVected hand. As a result,
the child usually ignores that hand, and uses the function-
ing hand exclusively.
Posterior tibialis
Swan-Neck Fingers
muscle (locking Wngers)
In swan-neck (locking) Wngers, the end joint (DIP joint)

becomes Xexed and the middle joint (the PIP joint) ex-
tends. The Wngers lock into this position and cannot be
moved unless another Wnger is used to unlock them. This
problem occurs in patients with athetosis, as well as in a
hand in which the Wnger Xexor sublimis tendons have been
Posterior tibialis Split posterior overlengthened.
tendon tibialis tendon
Care and treatment: The primary means of treating
mon in peroneal nerve palsy, Charcot-Marie-Tooth dis- swan-neck Wngers is to identify the movements that cause
ease, and muscular dystrophy (all conditions that aVect the the Wngers to lock and to try to teach the child to avoid
nerves or muscles) but should not be utilized for children moving in this fashion. If the child cannot refrain from
with spasticity because it frequently causes severe defor- these movements, there are small Wgure-eight splints that
mity in the opposite direction. may be worn. They are usually made of metal or plastic and
surround the middle joint (PIP joint), preventing it from
BeneWts and risks: The major beneWt of the split becoming extended. If the problem is related to certain ac-
tibialis posterior tendon transfer is that the foot is now tivities, the use of splints is an excellent alternative. How-
kept Xat so that the child can stand and walk much more ever, if the splints are needed all the time but cause skin ir-
adequately than before. The complications are usually mi- ritation and discomfort, surgery should be considered.
nor. The most common one occurs when the transferred
The surger y: Surgical repair involves taking the sub-
half of the tendon tears out where it is inserted, causing the
deformity to recur. If this happens, the surgeon can at- limis tendons and either suturing them into part of the ten-
tempt to resuture the end that tore loose. This procedure don sleeve to prevent the joints from extending or trans-
is usually successful. Overcorrection by developing a de- ferring the muscles so the sublimis muscles are strengthened
formity in the opposite direction is extremely unusual with and do not allow the middle joint to extend. Sometimes
this procedure. The major complications of the Frost pro- the deformity recurs because the repair stretches out, or
cedure are that children often outgrow it, and that if too muscle power imbalance is so great that it causes the de-
much lengthening is performed the opposite type of deformity to recur.
formity, known as severe Xat foot, develops. Frequently, splints are used after surgery following the
initial cast immobilization. Finger splints may be used for
After-surger y care: The usual care after the split three to six months to protect the repair while it matures.
tibialis posterior transfer procedure is to place the child in
a short leg walking cast for four weeks, although some sur-
geons prefer using a long leg cast. Most surgeons allow the Syndrome
child to walk. An AFO may be used temporarily after the A syndrome is a constellation of physical Wndings that tend
cast is removed, but frequently this is not necessary. Spe- to occur together. Sometimes these are due to a chromo-
cial physical therapy exercises are not needed after this pro- somal defect, such as with Down syndrome, which is
cedure. caused by having three copies of chromosome number 21
instead of two copies. Other syndromes are associated
Stereognosis with speciWc agents that can cause a birth defect. Probably
the most common of these is fetal alcohol syndrome, asso-
Stereognosis is the speciWc sensory capability to deWne the ciated with the ingestion of alcohol by a pregnant woman.
shape of an object by touch. Children with cerebral palsy Numerous other syndromes have been described and are
450 ♦ syphilis / therapy
grouped together by having similar physical Wndings. riorating into a cyst, or manifesting itself as a result of a
Many of these are known to be genetic, but many others spinal cord injury. There is no known genetic cause of either
are simply a description of a constellation of abnormalities condition, and both may be associated with other anom-
that seem to occur together in more than a random fash- alies (including myelomeningocele), although not cere-
ion—and may or may not be genetic. Many of these are as- bral palsy. The presenting symptoms of syringomyelia
sociated with mental retardation and seizures; others may easily mimic CP.
have physical problems not unlike the child with cerebral The advent of the MRI scan has made it possible to di-
palsy. agnose many syringomyelias and diastematomyelias, even
when not causing any symptoms. A common recommen-
dation is to continue to observe the child with these cysts;
Syphilis if the cysts do not enlarge or cause other problems, no ac-
tive treatment is given. If treatment is necessary, it might
Congenital syphilis is contracted from an infected mother
include a shunt, to drain the cyst into a vein or the ab-
at any time during pregnancy or at birth. Among women
domen. Unless exceedingly severe, these cysts do not cause
with untreated early syphilis, 40% of pregnancies result in
signiWcant diYculty with movement or use of the legs.
death of the fetus or newborn. Other infants can be born
Surgical excision is suggested for a diastematomyelia when
prematurely. At birth, infants may or may not have signs of
it is causing symptoms due to tethering, to prevent further
disease. Such signs may include enlargement of the liver
loss of spinal cord function.
and spleen, enlargement of lymph nodes, lesions of the
skin and/or mucous membranes, deformity of the bones,
hemolytic anemia and/or a low platelet count. Untreated Therapy
infants, whether or not they have such early signs, may de-
velop late signs of disease, including brain damage, cranial (physical therapy, occupational therapy, sensory
nerve deafness, and a variety of other abnormalities. All integrative therapy, neurodevelopmental therapy,
pregnant women should be screened for syphilis early in NDT, conductive education, M.O.V.E. curriculum,
pregnancy with a blood test and preferably again at deliv- myofascial manipulation, hippotherapy,
ery. If a pregnant woman is known to have syphilis, she can aquatherapy, Adeli suit)
be treated with antibiotics, speciWcally penicillin, which The goal of any therapy is to maximize each child’s func-
should eradicate the infection. A newborn who is diag- tioning to all that it can be. Therapy may be performed by
nosed with active syphilis can also be treated with antibi- many people, including parents, grandparents, school-
otics, though the brain injury may have already occurred. teachers, and even the child himself or herself. The profes-
Although currently rare, congenital syphilis infection is a sional therapists most often encountered are physical, oc-
cause of cerebral palsy. cupational and speech therapists, who are trained and
licensed practitioners under whose expertise the therapy is
Syringomyelia directed or personally given. (Speech therapy is described
on page 445).
(diastematomyelia, tethering of the spinal cord) Physical and occupational therapists’ approach over-
lap because their focus is to help the child develop motor
Syringomyelia means that a cyst is present in the spinal
skills. Areas in common include seating assessments, early
cord. These cysts may be isolated, but are frequently asso-
intervention therapy, and developmental testing. Physical
ciated with other conditions. They may cause scoliosis,
therapists, however, focus mainly on gross motor or large
and are often detected at adolescence when a girl is thought
muscle activities involving the legs, such as walking, brac-
to have idiopathic scoliosis. The cyst may get larger and
ing, using crutches, and rehabilitation after surgery. Oc-
cause decreased joint sensation, weakness, or poor sensa-
cupational therapists focus primarily on Wne motor activi-
tion in either the arms or the legs.
ties involving the upper extremities, and functions such as
Diastematomyelia means that there is Wbrous tissue,
feeding, writing, and using scissors; they also splint the
cartilage, or bone within the spinal cord. This can lead to
arm as necessary. As the child grows older, occupational
problems as the child grows, with the spinal cord getting
therapists stress activities of daily living such as self-
caught on the Wbrous substance (tethering), resulting in
dressing, bathing, and preparing food.
loss of function of the legs or the bowel and bladder.
In choosing a speciWc physical or occupational therapist,
The cause of either one of these spinal cord abnormal-
it is usually best to Wnd one who is trained and experienced
ities is usually a congenital malformation. However, occa-
in dealing with children with developmental problems.
sionally the cyst is actually a spinal cord tumor that is dete-
therapy ♦ 451
The following is a discussion of several of the therapeutic disabilities to gain greater physical independence. It com-
approaches available for a child with a physical disability. bines functional body movements with an instructional
Many have not been scientiWcally tested in groups of chil- process designed to help people acquire increasing amounts
dren with CP. However, as any given child may respond to of independence in sitting, standing, and walking. The
a speciWc type of intervention, parents can investigate these goal is to teach especially those functional motor skills
therapies. Parents, however, need to check with their tra- needed for adult life. The program is for any child or adult
ditional medical providers to make sure that the approach who is not independently sitting, standing, or walking, and
has the potential to help, and will do no harm. includes those with mental retardation. The M.O.V.E.®
Sensory integration therapy was developed by Jean Ayres curriculum can be applied in a special school or a regular
to help children who do not understand how to execute classroom setting and provides students with increased
normal movements because of decreased sensory input. opportunities to participate in life activities with their
The theory behind sensory integration suggests that move- peers without disabilities.
ment disorders are caused by poor input from the sensory Myofascial release therapy is a gentle blend of stretching
system, thus allowing primitive reXexes to persist and pre- and massage. It is often used to treat musculoskeletal pain
venting children from developing normal motor move- such as long-standing back pain, Wbromyalgia, recurring
ments. The treatment protocol involves a large amount of headaches, or sports injuries. However, it has also been
active and passive touching and muscle movement stimu- oVered to children with birth trauma, head injuries, and
lation to encourage the brain to initiate better movement CP, with little evidence that it changes the course of these
patterns. This technique employs swinging movements in conditions. It is an outgrowth of chiropractic techniques.
swivel chairs as well as direct, hands-on exercises. The basic therapy consists of stretching and manipulation,
Neurodevelopmental therapy (NDT) was developed by with the goal of stretching out the connective tissues in-
Drs. Karl and Bertha Bobath. It has become one of the volved in joint capsules and in the fascia overlying the
most commonly used intervention strategies for infants muscles.
and children with developmental disabilities, including Equine therapy, also known as horseback riding ther-
CP. As our understanding of how the brain controls move- apy, or hippo-therapy has become quite popular. The
ment has evolved, so has the theory of NDT. NDT-trained underlying theory is that the positioning and large move-
therapists use a variety of specialized techniques that en- ments provided by horseback riding are very helpful in es-
courage active use of appropriate muscles and diminish in- tablishing balance and relaxation of spastic muscles. The
volvement of muscles not needed for the completion of a vertical motions of horseback riding are thought to pro-
particular task. Therapists set individual functional goals vide sensory stimulus, which decreases muscle tone. Sit-
that build on each other to facilitate new motor skills, or ting on the horse helps with stretching hip adductors and
improve the eYciency of previously learned skills. In NDT improves pelvic tilt and trunk positioning. This allows bet-
the child takes an active role in treatment design. The ther- ter muscle movement and range of motion for the thera-
apist must constantly reevaluate their input into the child’s pist to work with after the child Wnishes the session. An-
movement, as they reassess and redesign the goals for the other beneWt is that many children enjoy horseback riding
child. NDT can be used by occupational, speech, and phys- therapy because they have friends or siblings who ride
ical therapists, as well as educators. horses too.
Conductive education was developed at the Peto Insti- Aquatherapy or hydrotherapy is therapy performed in
tute in Hungary and is now being provided in many water. The eVects of the water give children a feeling of
countries throughout Europe as well as the United States, weightlessness, which helps to reduce tone and allow these
Canada, Australia, and others. It is a system of teaching children better motor control. Aquatherapy is used for
and learning for children with motor disorders. It is a postoperative rehabilitation to allow children to start walk-
method of exercises and education that are broken down ing with reduced weightbearing. It is also a good modality
into basic functional movements. The exercises are per- for gait training, especially in an overweight child who
formed intensively for Wve hours per day, Wve days per may be able to walk in water with relative weightlessness.
week, in small groups. In addition, swimming as a recreational activity is excellent
The M.O.V.E.® program, which stands for Mobility for children with CP. For many children for whom walk-
Opportunities Via Education, is an activity-based curricu- ing consumes a great deal of energy, learning to swim, and
lum designed to teach basic functional motor skills. It using this as physical conditioning is an excellent option.
combines special education instruction with therapeutic Spacesuit therapy was Wrst investigated in Russia and
methods. The M.O.V.E.® curriculum provides a frame- later became very popular in Poland, using the ADELI®
work for teaching the skills necessary for individuals with suit. The suit was originally designed to help cosmonauts
452 ♦ tibial torsion
maintain their muscle tone in a weightless environment. It in early childhood, torsional problems almost always com-
was then modiWed to help children with CP. It is a form- pletely resolve themselves. In children with cerebral palsy,
Wtting suit with adjustable elastic bands designed to put however, under the inXuence of spastic muscles that do
the body into proper alignment. An intensive physical not develop normal rotational pull, these torsional prob-
therapy program focuses on improving sensory stimula- lems have a great tendency to persist and cause problems.
tion and allows children to learn movement, standing pos- Internal tibial torsion refers to the internal rotation of
ture, and balance strategies. A similar approach has been the ankle with respect to the knee joint, causing the foot to
started in the United States, though it is not aYliated with point in when the child walks. This can be present with
the European program. It utilizes multiple therapeutic femoral anteversion (a similar twist in the femur, or thigh-
tools meant to promote the performance of independent bone, and another common cause of in-toeing) which
and controlled movements while strengthening an iso- causes the knee to turn in. The in-toeing may be exceed-
lated muscle group. The therapy program may involve up ingly severe—in some cases, the heel may be in front of the
to 20 hours per week of intensive therapy. toes as the child walks, causing the feet to turn backward.
However, a child may have femoral anteversion, where the
Indications: With such a large number of diVerent
knee is pointing in, and have compensatory external tibial
and often conXicting types of therapy available, parents
torsion, so that the foot is pointing out. In this situation,
frequently have trouble deciding what is best for their
the foot looks like it is pointing in the right direction, but
child. There are many therapists, parents, and other advo-
the knee appears to bend in the wrong direction when the
cates for each therapeutic modality who embrace that
child walks, causing the knees to knock together. There are
method with an almost religious fervor. It is generally best
some children who have normal alignment above the knee
to take these overenthusiastic perspectives with a grain of
joint but have foot problems such that they are almost
salt, because each therapeutic method has some bit of truth
rolling over the inside of the foot instead of walking with
to it, and no one approach can miraculously “cure” a child,
the normal heel-to-toe movement.
especially one who is not physically predisposed to change.
Parents should choose a therapist in whom they have
conWdence and who seems to relate well to their child. It is
better to focus on the child’s progress than on the speciWc
theory or modality.
BeneWts and risks: Most pediatric physical and oc-

cupational therapy specialists who work with children with
cerebral palsy use a general approach in which they choose
individual techniques from many therapies for the greatest
beneWt to the child. Most experienced therapists try work-
ing with diVerent methods until they Wnd the one to which
the child seems to respond best. Generally speaking, if a
child is responding both physically and psychologically,
then the therapeutic modality is working for her.
Tibial Torsion
(internal tibial torsion, external tibial torsion, in-
toeing gait, out-toeing gait)
Tibia bone
When a child walks, his or her foot may point slightly in
(called in-toeing) or slightly out (called out-toeing). There
are several causes of this, one of which is tibial torsion. Tib-
ial torsion means that there is a twist in the tibia (the bone
between the knee and the ankle) causing the knee and the
ankle joint not to line up in a parallel manner. This torsion is
generally due to the way a child was born or the way a child
was lying in utero during the last trimester. In normal chil-
dren under the inXuence of normal muscle pull and walking In-toeing Out-toeing
toe walking ♦ 453
Indications: These torsional problems tend not to comes oV, it usually takes three to four weeks for the foot
improve in children who have spasticity, although as they to have normal sensation and for the child to really feel
mature they may get better motor control and growth may comfortable walking.
improve their appearance. A child who is learning to walk
and having severe diYculty because of rotational problems
of the legs ought to have surgery. There are no braces, ex- Toe Walking
ercises, or other devices that have a permanent impact (toe dragging, idiopathic toe walking, Achilles
upon these rotational problems. However, surgical correc- tendon contracture)
tion of these rotational malalignments at any age is usually
permanent, with recurrence very rare. Toe walking is a very common condition in young children
as they start to walk, and it is normal for children up to 2
The surger y: Tibial torsion is usually corrected just years of age. However, by the time a child is 2 1⁄2 years old,
above the ankle joint: a small stab wound is made, and a he should be walking with his heel down and the remain-
drill bit is utilized to drill a number of holes across the tibia der of his foot Xat. Persistent toe walking can be an early
and the small bone (the Wbula) on the lateral side. The bone sign of cerebral palsy, but there is a condition called id-
is then cracked and rotated into the proper alignment. An- iopathic toe walking in which children do not have any
other technique for making this correction is to make a other signs of cerebral palsy but are persistently far up on
small incision just below the knee joint and cut the bone at their toes.
this level. Holding the bone in proper alignment is slightly
harder in this area, and the osteotomy above the ankle
joint is generally favored.
BeneWts and risks: The primary beneWt of this sur-

gery lies in improving the child’s ability to walk, by im-
proving his alignment. The complications of tibial tor-
sional osteotomies are few; however, either insuYcient
correction or overcorrection is possible. Further, there
needs to be some way to make sure the correction is main-
tained during healing: if insuYcient casting is applied, the
proper alignment may be lost. Generally a pin is placed
through the tibia just below the knee, and the foot and
knee are placed in the cast to maintain the correction. This
method also allows the child to start walking as soon as the
pain subsides. Casting above the knee with the knee bent
at 90 degrees is a method used by some physicians. How-
ever, the child is not able to walk immediately, and may de-
velop hamstring contractures from being in a cast.
Another complication of torsional osteotomies done
to correct severe torsional problems may be the stretching
of nerves. Any correction of over 40 degrees requires great
caution because the procedure is like wringing a dishcloth:
this “wringing-out eVect” can cause both nerves and arter-
ies to be stretched, causing diYculty with nerve function
or blood Xow to the foot.
After-surger y care: Postoperative management de-

pends on the type of cast used, but if a short leg cast and Indications: By 2 1⁄2 to 3 years of age, this pattern
pin are used, the child may start walking immediately. If a should be treated with a brace, such as an ankle-foot ortho-
long leg cast is used with the knee bent, at four weeks it is sis (AFO). If it is ignored, some children who do not have
frequently converted to a short leg cast, at which time the CP gradually develop a Xatfooted walking pattern; others
child may start walking. Casts must be kept dry. Physical develop such tight Achilles tendons that they need surgical
therapy is usually prescribed to work on teaching the child lengthening by age 7 or 8. The child with cerebral palsy
a new gait pattern after the cast is removed. After the cast should be treated with an ankle-foot orthosis also, espe-
454 ♦ toes / tracheostomy
cially if the toe walking is causing diYculty with balance The surger y: If the patient is relatively young and
and muscle coordination. Initially, an AFO that does not the toes are not too stiV, releasing the tendons on the un-
have a hinge is best; as the child gains more muscle con- derside of the toes is suYcient. If the toes, however, have
trol, coordination, and balance, he can use an AFO with a become very stiV, the middle toe joint often needs to be re-
hinged joint, which lifts up the foot so that the toe does moved to fuse the joint, and a small pin is placed across the
not drag. For children with spasticity, the Achilles tendon joint for approximately four weeks. In cooperative teen-
becomes tight because the muscle does not grow ade- agers or adults, this procedure is done under local anesthe-
quately, and manual stretching often improves this. For sia, often in the doctor’s oYce. General anesthesia is
some children, using the AFO may help the muscle grow. needed for children.
Once the Achilles tendon contracture becomes too
BeneWts and risks: In most cases, the procedure
tight to wear an AFO, surgical lengthening of the Achilles
gives a nice correction that is maintained for a lifetime. The
tendon should be considered. The use of the ankle-foot or-
complications from these procedures are relatively mini-
thosis is also necessary for toe dragging; however, even for
mal, with the worst being recurrence of the deformity in
adolescents with cerebral palsy, if the Achilles tendon is not
the rare situation where not enough correction was ini-
too tight, they should be able to pick up the foot suY-
tially obtained. Operations on the small toes usually do
ciently so the toes do not drag. Occasionally, there are chil-
not require casts, only soft dressing, and the wearing of
dren and young adults who continue to wear AFOs be-
open-toe shoes for approximately four weeks.
cause they cannot pick up their feet due to weak muscles in
the front of the calf. Toe dragging is also often caused by
knee stiVness and is signiWcantly improved with rectus Total Parenteral Nutrition
transfer surgery at the knee.
Toe walking fosters further contractures of the Achilles (TPN, hyperalimentation)
tendon and also limits balance and motor coordination, TPN is an intravenous infusion of nutrients that we nor-
since the child does not have a rigid foundation on which mally would get from the foods we eat. It contains protein
to stand. With the older child, toe dragging mainly causes as amino acids, carbohydrates as dextrose, and fat as lipids,
rapid wear of shoes, can make the child look very clumsy, as well as vitamins and minerals. This intravenous (IV)
and causes the child to trip. solution is usually given centrally, meaning through a
catheter that is placed into a large vein in the chest and ends
Toes in the heart. It can be given peripherally, meaning through
a regular IV in the arm or leg, but only for a few days, and
(claw toes, hammer toes) with much lower concentrations of nutrients. Some chil-
dren will require TPN if their gastrointestinal (GI) tract is
Small toes can develop deformities from spasticity, and
not working properly, or if they are not able to eat by
usually a claw or hammer toe deformity develops when toes
mouth. While there are many diVerent reasons that a child
Xex severely. Inside the shoe, the end of the toe may become
might need TPN, it would typically be used in a child with
very sore from digging down into the sole, or alternatively
CP following surgery for scoliosis, after abdominal surgery,
one of the toe knuckles may become sore from pushing
or if the child develops pancreatitis, which would result in
against the top of the shoe. Padding or modifying shoes
vomiting and intolerance to feedings. Rarely, children (in-
may be helpful, but these toes may cause lifelong pain that
cluding those with CP) develop severe dysmotility of their
can only be improved with very simple surgical procedures.
gastrointestinal system, meaning that their system no longer
works well, and they cannot tolerate feedings through
their stomach or even small bowel. Such children might
need TPN for a long time or even chronically if their sys-
tem does not resume normal function.
Tracheostomy
(laryngotracheal separation)
A tracheostomy is an operation which creates an opening

Toe with claw-like from the neck into the trachea (windpipe). One of the rea-
deformity sons it is done is to bypass a tracheal obstruction and pro-
transition of medical services ♦ 455
vide an airway. It is occasionally performed on children the neck through this opening so that air can directly enter
with cerebral palsy, since they frequently aspirate (inhale) into the lungs. If the aspiration is severe, then a laryngo-
food or liquids into the windpipe. This condition leads to tracheal separation or diversion may be needed. This is a
frequent bouts of pneumonia, a chronic cough or bron- procedure where the trachea is divided, permanently sepa-
chitis, and sometimes asthma. Over time, it may cause per- rating the lower windpipe from the mouth. This prevents
manent damage to the lungs and be life-threatening. saliva from entering the lower airway. A laryngotracheal
separation or diversion is generally considered for children
Indications: If the condition is persistent and not
that cannot speak.
improving, the growing child may require that the trachea
be opened in the front of the neck. A tube is then placed in The surger y: The procedure involved is a very short
operation usually requiring less than 30 minutes. It in-
volves opening the trachea and inserting a plastic tube.
After-surger y care: A tracheostomy may seem like

an intimidating procedure to a parent. Caring for a child
with a tracheostomy, however, need not be complicated. It
is generally easy for parents and school personnel to learn
to manage a tracheal tube, including cleaning and chang-
ing it when necessary. Usually, however, the Wrst change of
the tracheostomy tube should be done by the surgeon. The
tracheostomy makes suctioning easy to help the child deal
with the large amount of secretions. A laryngotracheal sep-
Esophagus aration prevents aspiration of secretions. A tracheostomy,
Trachea however, makes Wnding respite care and care in some facil-
ities more diYcult because the person needs to stay with
someone trained in caring for the tracheostomy. Although
it is not diYcult, training is mandatory.
Tracheostomy tube What to expect: Increased care is usually necessary
for the child who has a tracheostomy or laryngotracheal
Tracheostomy
separation. The air now bypasses the mouth and is not
moisturized, so some type of additional moisturizing is
often necessary. A parent or other caregiver must also be
trained to clean and change the tube after a tracheostomy.
Transition of Medical Ser vices

There are two major transitional milestones that must be
achieved by the adolescent or young adult, whether or not
they have a disability. These are the transition from the pe-
diatric health care system to the adult health care system
and the transition from school to whatever lies after school,
whether it be further education, a job, or a change in living
situation.
Discontinuous Esophagus As adolescents become adults, they need to assume re-
trachea sponsibility for their own health care. For the adolescent
with special health care needs, such as cerebral palsy, this
may be diYcult. It is often hard to Wnd an adult care
provider who is trained in caring for a pediatric condition
Tracheostomy tube such as CP or willing to assume primary responsibility for
that care. Many pediatricians and pediatric hospitals will
Laryngotracheal separation transition patients from their care either at age 18 or 21, or
456 ♦ triplegia / ultrasonography
sometimes even 25. However, at some age this transition medical practice that either promote or impede the transi-
needs to happen, and it can be emotionally diYcult for the tion. Many youths and young adults lack the health insur-
physician, the family, and the child. ance they need because family health insurance coverage
A summary of the child’s health history is often a good typically ends for dependent children between 18 and 23
place to begin. It is a summary form of a child’s health and years of age, and the young adult may not have a job that
medical history, and if possible should be Wlled out by the provides health insurance. Many health insurance safety-
teen herself, or with help from parents if necessary. It net programs that are available to children are not available
should include a description of the child’s special needs, to young adults. The third is personal preferences and in-
the medications she is currently taking and why, any aller- terpersonal dynamics. On the one hand, young adults often
gies or adverse reactions to medications or foods, past hos- want to make the transition because they no longer want
pitalizations or surgeries, and any serious illnesses she may to be treated as a child. Barriers include the fact that the
have had. This is a tool for the teen to learn more about her adult health providers may not recognize the family and
general health and speciWc health care needs and how to ar- young adult herself as being knowledgeable members of
ticulate knowledge of her own condition when meeting the treatment team in the way that the pediatric team did.
with new doctors. It is also a chance for the parents to un- In addition, many families and pediatricians have built up
derstand what gaps in knowledge and experience must be a very close personal relationship through the years and
learned before the teen is ready to transition to adult health will have a hard time separating as this phase approaches.
care and more independence. For the child with CP who Although not all these problems can be addressed, the
may not be able to assume this kind of responsibility, for following are suggestions to help make the transition a bit
instance, because of cognitive limitations, the parents them- easier: The family, young adult, and provider must have an
selves may want to complete such a form. awareness that the child will likely live into adulthood (which
One of the Wrst priorities of the child transitioning her is certainly true for most children with CP) and the transi-
care will be to Wnd a primary care provider who hopefully tion process should be started early, meaning before ado-
can provide a “medical home” for the young adult. This lescence. This includes planning for insurance coverage,
may be a family doctor who has monitored the child since providers, and equipment. Family members and health
infancy, or it may be the parents’ own doctor who has care providers need to foster as much personal and medical
cared for them but not for the child, and who may now be independence as the child is capable of. The pediatric health
willing to assume that responsibility as well. Or it may be care workers and families need to learn to “say goodbye”
someone entirely new to the child and family. This primary and to celebrate transitions as they occur. As part of this
care doctor would then help in identifying which special- process, develop a written transition plan that anticipates
ists will be needed and who they might be. Alternatively, future needs and use the plan as a means to document what
the pediatric subspecialists who have cared for the child has been completed and what still needs to be done.
until now may be able to identify colleagues of theirs who
treat adults.
Healthy People 2010, a plan generated by the United Triplegia
States Department of Health and Human Services in Triplegia is a term that may be confusing. There is not a
2000, established a goal that all young people with special typical pattern of involvement, although it is best used to
health care needs will receive the services needed to make describe children who have signiWcant involvement in
necessary transitions to all aspects of adult life, including three limbs and have one limb that is much more func-
health care, work, and independent living. There continue tional. Usually it describes involvement of both legs and
to be signiWcant barriers to this goal, which can be divided one arm. There is tremendous variation in this pattern—it
into three major components that promote or impede the is usually a combination of hemiplegia overlaying diplegia.
movement from child-centered to adult systems: service However, some children have quadriplegia, with much
needs, structural issues, and personal preferences. Service less involvement in one arm.
needs refers to the availability or absence of treatment ser-
vices and the degree to which these services will satisfy the
young adult and his family. Such services must be devel- Ultrasonography
opmentally appropriate and address the changing and
(ultrasound)
maturing needs of young adults, including services that
address his reproductive issues and concerns. Structural is- Ultrasonography is an imaging technique employing high-
sues refer to insurance coverage, institutional policies, and frequency sound waves (above the level that we can hear)
umbilical hernia / undescended testicles ♦ 457
that bounce oV body tissues. When sound waves are sent Tylenol is usually suYcient for after-surgery care. The
through body tissue, some bounce back and can be used child may be as active as he wants and is usually allowed to
to make a picture, which can then be viewed on a video take a bath after three or four days.
screen. The echo pictures that show solid and Xuid struc-
tures in the body are interpreted by a radiologist who has
been specially trained to recognize them. The ultrasound Undescended Testicles
apparatus consists of a console about the size of a desk and (testicles, testicular torsion, orchidopexy)
is equipped with one or more video monitors. Only the
transducer actually comes in contact with the patient. This When a male fetus is growing in his mother’s womb, his
device emits and receives the sound waves and is con- testicles form high up in his abdomen. Gradually, in the
nected by a cable to the console. The technologist doing last trimester of pregnancy, they move down from the ab-
the scan puts a clear gel over the area to be scanned, which domen into the scrotum, where they normally are at the
helps form a better connection between the transducer time of birth. If the testicles do not come down in the scro-
and the patient. The technician then slides the transducer tum, they are considered undescended. Premature infants
around until the appropriate images have been seen and are more likely to have undescended testicles than full-
recorded on the video monitor. There is no pain or dis- term infants because this migration process has not fully
comfort when having an ultrasound exam. occurred. Both testicles should be descended into the scro-
tum by the Wrst birthday.
Indications: Ultrasound is used extensively for im- Some boys have testicles that are called “retractile,” be-
aging the fetus during pregnancy and is used to evaluate cause they are not in the scrotum most of the time but
the brain in newborn infants when the skull is not com- can be felt high at the top of the scrotum at the edge of
pletely closed. It is also used to evaluate hip dislocation in the groin. But when they are pulled, they come down
infants and to view the liver, spleen, and kidneys. into the scrotum without any discomfort or much ten-
sion. Generally, retractile testicles do not become unde-
BeneWts and risks: The major beneWt of ultrasound
scended but with growth relax and come down into the
examination is that it involves no radiation and is per-
scrotum. These should be monitored by the pediatrician,
formed quickly without requiring sedation. The major risk
however, because occasionally they can become stuck in
is that the images obtained are often diYcult to interpret;
the high position, which is technically a form of unde-
the outcome may depend on the skill of the technician or
scended testicles.
physician doing the examination. For this reason, ultra-
Boys with spasticity due to cerebral palsy have a high
sound is most helpful when it is used by technicians and
incidence of undescended testicles, which may be due in
physicians with special training.
part to the frequency of prematurity at birth, but is prob-
ably also due to the spasticity, which is present in the
Umbilical Hernia muscles and pulls the testicles back into the abdomen.
An umbilical hernia occurs when the muscle in the ab-

domen around the umbilicus (or belly button) has a weak-
ness that allows the intestines to come through the open-
ing. This type of hernia is very common and rarely causes
problems in children. It is often present in very young chil-
dren; as they grow, the area becomes tighter and the her- Undescended
nia does not bulge as much. testicle
Unless the hernia becomes very sore, surgery is sel-
Ductus
dom recommended before age 5. If the hernia is present af- deferens
ter age 5, it is not likely to improve on its own and a surgi-
cal repair is indicated, to tighten the muscles around the
Bladder
umbilicus. Complications from the surgery are rare, since
it is a small procedure (usually performed on an outpatient
basis) which involves suturing some of the muscle and Descended
skin. If an infection occurs, it can easily be identiWed and testicle
treated.
458 ♦ unit rod
The surger y: The operation to bring the testicles Unit Rod

down into the scrotum is called an orchidopexy; it is usu-
(Luque rod, segmental sublaminar
ally recommended for boys whose testicles have not de-
instrumentation [SSI])
scended into the scrotum by age 1. The surgical descending
of the testicles is performed to keep the testicle from be- A Luque rod is a smooth, stainless steel rod that is attached
coming entrapped or twisted, thereby cutting oV its blood to the spine with wires that are passed between the spinal
supply and causing it to die, which requires an emergency lamina in the back and the spinal cord beneath it. It pro-
operation. There is also an increased risk of developing tes- vides very strong Wxation because wires are passed at each
ticular cancer later in life if testicles are not descended into vertebra. Usually two rods are used, one on each side of the
the scrotum. Bringing the testicle down into the scrotum, spine in the back.
however, does not necessarily reduce the risk of cancer, but This system was originally designed to be used with pa-
it does make the testicles much easier to examine for the tients who have neuromuscular problems; it is still utilized
presence of any lumps or masses. Also, boys who are active by a number of surgeons. However, the Luque rod has
are much more likely to injure the testicle if it is partially been superseded by the unit rod, an improved version that
descended, as it often sits right in front of the pubic bone, has only one single rod bent in a conWguration that is ideal
so any pressure in that area can damage the testicle. An- for enabling a child to sit. This rod may be a single unit, al-
other reason for surgically bringing the testicle down into
the scrotum is to enhance the boy’s self-esteem, especially
when he grows older.
The surgery is usually performed on an outpatient Rod is attached to
basis: the child comes to the hospital, has general anes- spine by wires that
wrap around rod and
thesia, and then leaves the same day. An incision is made
back of vertebrae
in the groin, the testicle is identiWed and brought down
into the groin, and a suture is placed, holding it down to
the bottom of the scrotum. Afterwards, boys are often
limited in their activities, partially because of the dis-
comfort and partially because the procedure needs time
to heal.
Unit rod
BeneWts and risks: The procedure has a very high
success rate, and complications are rare. The boys usually
recover very quickly and by two weeks are back to full ac-
tivity without any problems. Parents should follow up with
a physical examination every year until puberty to make
certain that the testicles continue to grow normally. When
complications occur, infection is the most common, and
can easily be treated with antibiotics. Infection is identiWed
by the child’s having a fever, not wanting to eat, and hav-
ing an inXamed incision. Occasionally, the blood supply
to the testicle is insuYcient, and the testicle has to be
removed. If this occurs, a simple procedure, called frame
plantation of a testicular prosthesis, is recommended at pu-
berty. Occasionally, the testicle may remain undescended
even after the surgical procedure, and a repeat operation is
sometimes necessary.
Children with one undescended testicle have a slightly
lower fertility rate than the general population. Infertility,
however, is very common when both testicles are unde-
scended. It’s debatable whether the operation to descend
the testicles improves fertility, but a signiWcant number of
doctors believe that it does not do so.
urinary tract infections / urodynamic testing ♦ 459
though some surgeons use two rods and connect them

with rigid plates to make a unit rod. The unit rod is more
stable than the two individual Luque rods and is far better Kidney
at maintaining correction and correcting pelvic obliquity.
This is the current preferred instrumentation for children Ureter with
with cerebral palsy. reflux to
kidney
Indications: This instrumentation is indicated for
Ureter with
patients who have progressive scoliosis, kyphosis, or lor-
normal flow
dosis because of neuromuscular problems. One of the
main indications is for children with spinal deformities Bladder
due to cerebral palsy.
BeneWts and risks: The beneWt of the unit rod is ex-

cellent correction of the spinal deformity, which is held
strongly enough so that no cast or brace is needed after sur-
gery. Complications and risks are those of a posterior
spinal fusion. The major problem with the individual
Luque rods is their instability, which can prevent adequate
and/or stasis in the urinary system, which means that the
correction of the curve at the time of surgery. In addition,
bladder does not empty completely and some urine re-
the rods can shift, causing a loss of the original correction.
mains in the bladder, allowing bacteria to multiply. In ad-
The rods may need to be revised, since the curve can be-
dition, if infected urine comes back up from the bladder
come large enough so that the child has a great deal of diY-
into the kidney, because of vesicoureteral reXux, it can cause
culty sitting. Also, if the spine does not heal, the rods may
kidney damage. This is the situation in some patients with
break and need to be revised.
cerebral palsy, whose neurological condition has caused
Maintenance and care: Generally, after instrumen- poor bladder functioning.
tation with these systems the child is able to sit in a chair, Patients with urinary tract infections should undergo
take a shower after two weeks, and return to school after radiological studies to evaluate the anatomy of the kidney
four weeks with no special restrictions or instructions. No and bladder and to determine whether there is vesicoureteral
special maintenance is necessary. reXux present. Ultrasound examination of the kidney,
ureters, and bladder shows the anatomy of this system. The
evaluation for reXux is done by a procedure called a void-
Urinar y Tract Infections ing cystourethrogram (VCUG), which consists of placing
dye into the bladder and watching to see if it is all emptied
Urinary tract infections include a range of infections by
out or whether some is pushed up toward the kidney.
microorganisms in the urinary tract. Fever may be the only
The degree of reXux is graded on a scale from 1 to 5,
symptom of a urinary tract infection, especially in young
with 1 being the mildest and 5 the most severe. Mild forms
children. Boys are aVected far more often than girls during
of reXux are usually managed with the use of prophylactic
the newborn period, and it has been found that uncircum-
antibiotics (perhaps one dose a day of an antibiotic to pre-
cised boys are aVected far more frequently than those who
vent a urinary tract infection), whereas more severe reXux
have been circumcised. This has led to a change in think-
may need to be treated with surgery, by a urologist. If both
ing regarding circumcision—which until recently was felt
the ultrasonogram and the VCUG are normal, then no fur-
to be an unnecessary procedure that was done for cultural
ther evaluation is necessary. If the VCUG shows reXux or
but not medical reasons.
if the ultrasonogram of the kidney is abnormal, then a re-
After the newborn period, urinary tract infections are
nal scan is performed. This is the most sensitive means of
far more common in girls, but, for both boys and girls,
detecting scarring of the kidney.
there needs to be further evaluation of the urinary tract sys-
tem if an infection occurs. A major contributor to infec-
tions may be vesicoureteral reXux, which means that when Urodynamic Testing
the bladder attempts to empty, some urine goes back up
into the ureters toward the kidney, rather than out of the For patients with cerebral palsy who are not able to be toi-
body. Other predisposing factors are incomplete drainage let trained, the incontinence may be due to the dynamic
460 ♦ vagus nerve stimulator / valgus
function of the bladder, which can be evaluated by urody-

namic testing. This test consists of measuring the pressure
and volume of the bladder as well as the sphincter muscles,
which should relax and contract at various times during
urination. If these various processes are not working nor-
mally, testing will aid in assessing the problem and may in-
dicate the right medication to help relieve these symptoms.
Indications: Children who are 5 years of age or older

and have the mental capacity to understand the concept of
going to the bathroom, but who are unable to control
their bladder, should have urologic evaluation including
uroXometry and urodynamic testing. Children who have
periodic incontinence, which they do not seem to be able
to control, should also undergo urologic evaluation. The
child who has to urinate very frequently may have a very
small bladder volume, and this too can be measured and
detected with urodynamic testing. A comprehensive uro- usually in the left chest area. It has wires that are threaded
dynamic evaluation includes noninvasive assessment of up under the skin and wrapped around the left vagus nerve
urination (uroXometry and post–void residual measure- in the neck. The vagus nerve has a link to the brain. The de-
ments) and invasive testing (a catheter in the bladder mea- vice is programmed by a special computer to stimulate the
sures bladder pressure). left vagus nerve throughout the day, which ultimately
stimulates the base of the brain. This stimulus helps to con-
BeneWts and risks: The beneWt of this test is that it trol seizures in some individuals. The VNS also comes
can measure the bladder’s capacity and the functioning of with a special, very strong magnet. This magnet can be
the sphincter muscles, so that the cause of incontinence moved over the device in the chest by the patient/family/
can be determined. The major risk is that it requires insert- caregiver to cause an additional stimulus to try to prevent
ing a catheter, which has a very small chance of causing an or stop a seizure.
infection in the bladder. The VNS can be eVective for all seizure types. It is avail-
Maintenance and care: If the child develops burning able to all patients who have failed or are unable to tolerate
other modalities (i.e., antiepileptic drugs, the ketogenic
upon urination or a fever after urodynamic testing, it may
diet) and are not candidates for epilepsy surgery. Side
indicate an infection. In this case, the child may need anti-
eVects are few. In regard to the surgical procedure, there
biotics for several days. There is no other aftercare required.
are the risks that accompany any procedure, such as infec-
tions and bleeding, as well as anesthesia risks. There is also
Vagus Ner ve Stimulator the rare possibility of the body’s rejection of the device. In
addition, some individuals experience hoarseness, cough-
The FDA approved the vagus nerve stimulator (VNS) in ing, gagging, and/or tingling when the device is activated.
July 1997 for use in the treatment of uncontrolled seizures. Once the individual has the device implanted, they must
The precise mechanism of action is unknown. However, it keep routine appointments with a health care provider
has been shown to eVectively control seizures in some pa- who is knowledgeable about the VNS device. The health
tients and signiWcantly reduce seizure frequency and/or du- care provider will continue to manage the individual’s re-
ration in many others. The device also gives the patient/fam- sponse to the device and its eVectiveness. In some situa-
ily/caregiver an active part in the reduction of seizures. tions, antiepileptic medications may either be reduced or
The child/adolescent has an evaluation with a neurolo- discontinued completely.
gist and health care team that is trained in the use of the
VNS. Tests may be conducted, such as video electroen-
cephalograms (EEGs) and medical imaging studies. Once Valgus
it is determined that the child is a candidate for surgery, a (valgus foot, valgus hip, valgus knee)
surgical evaluation is done by either a neurosurgeon or car-
diovascular surgeon, who usually do this procedure. Once Valgus is an anatomical term used to mean that a part of
these evaluations are complete, the child/adolescent is the body is bending away from the midline. The term val-
scheduled for surgery. The device is placed under the skin, gus is generally applied to the legs. At the hip it means an
varicella / vocational rehabilitation ♦ 461
increased angle of the femoral head and neck with the shaft or special lighting to be able to recognize objects that the
of the femur (thighbone). At the knee it means that the leg normal person can see just with room light or normal
below is bending away from the midline; or, in other glasses. Children with low vision qualify for state assis-
words, the child is knock-kneed. At the foot and ankle, the tance, but a patient who is deWned as legally blind will get
term is used to deWne the foot’s turning away from the additional beneWts. Even if the child has CP and/or other
midline and is approximately synonymous with the term impairments, having the ophthalmologist designate legal
eversion, which means that the sole points away from the blindness may provide more services and beneWts than just
midline of the body. having the child diagnosed with low vision.
A person who cannot recognize the large E at a dis-
tance of 20 feet is considered legally blind. Also, if the vi-
Varicella sual Weld is markedly decreased even with fairly good cen-
(chickenpox) tral vision, one can be considered legally blind. For the
child with CP who cannot see or speak and who may also
Congenital infection of infants with varicella, due to the be mentally retarded, the designation of legal blindness
mother’s infection early during pregnancy (up to 20 weeks may seem insigniWcant. However, being designated legally
gestation), is quite rare. AVected infants may have a low blind does provide a number of beneWts such as disability
birth weight due to intrauterine growth retardation. In ad- payments and additional educational services. The legal
dition, they may have distinctive skin abnormalities, in- deWnition of blindness may be diYcult to apply to a non-
complete development of certain Wngers or toes, abnor- communicative child, but a clinical diagnosis can usually
malities of the brain such as cortical atrophy or dilated be made by an ophthalmologist.
ventricles, macrocephaly, small eyes, seizures, mental re-
tardation, and neuromotor abnormalities that are treated
similarly to cerebral palsy. Vocational Rehabilitation
(job training)
Varus Vocational rehabilitation is a program of evaluating teen-
(varus hip, varus knee, varus foot) agers or young adults to deWne their strengths and to deter-
mine vocational possibilities that will use these strengths.
Varus is an anatomical term meaning that a part of the It generally starts in high school; most states have voca-
body is bending toward the midline. When varus aVects tional rehabilitation training programs for young adults as
the hip, it means that the angle between the femoral head, well. In order to succeed with a given individual, rehabili-
neck, and femoral shaft is decreasing. When varus aVects tation must take into account the whole person, including
the knee, it means that the leg below the knee is bending her or his speciWc interests; visual, cognitive, and physical
toward the midline (also known as bowlegs). At the foot abilities; and psychological and behavioral stability. The
the sole is pointing toward the midline of the body; varus goal is to develop a realistic plan that will match the indi-
foot is synonymous with inversion of the foot. vidual with a job that is appropriate for his abilities.
Visual Impairment
(low vision, legal blindness)
Low vision technically means that a person may need op-

tical aids or other modiWcations, i.e., TV monitor, Braille,
Resources:
Support Groups,
Foundations,
and
Government
Agencies
Advocacy Groups www.csun.edu/cod

[email protected]
American Association of People with Disabilities
(AAPD) Citizens United for Research in Epilepsy (CURE)
1819 H Street NW 505 North Lake Shore Drive
Suite 330 Suite 4605
Washington, DC 20006 Chicago, IL 60611
Works to further the productivity, independence, and in- 1-312-923-9117
tegration of people with disabilities into all aspects www.cureepilepsy.org
of society. The AAPD oVers Wnancial beneWts to its
Epilepsy Foundation
members in the form of services to help people with
4351 Garden City Drive
disabilities move toward achieving consumer and eco-
Landover, MD 20785
nomic power.
1-800-332-1000
1-800-840-8844
www.epilepsyfoundation.org
1-202-457-0046 (Fax)
www.aapd-dc.org/ Family Village
[email protected] Has a list of chat sites for children with CP or their par-
ents, links to information in a variety of languages,
The ARC of the United States
and other organizations that deal with CP.
1010 Wayne Ave
www.familyvillage.wisc.edu/lib_cerp.htm
Silver Spring, MD 20910
1-301-565-3842 Family Voices, Inc.
1-301-565-3843 (Fax) 2340 Alamo SE
www.thearc.org Suite 102
Albuquerque, NM 87107
Center on Disabilities at the California State University,
1-505-872-4774
Northridge (CSUN)
1-505-872-4780 (Fax)
18111 NordhoV Street
www.familyvoices.org
Northridge, CA 91330-8340
Conducts research and demonstration projects into new March of Dimes Birth Defects Foundation
technologies and service models, develops and pub- 1275 Mamaroneck Avenue
lishes materials of interest to the Weld of disability, as- White Plains, NJ 10605
sesses and trains persons with disabilities and those 1-914-428-7100
who serve them, and conducts conferences, seminars, www.modimes.org
and workshops in the United States and around the
world. Movement Disorder Society
1-818-677-2578 611 Wells Street
1-818-677-4929 (Fax) Milwaukee, WI 53202
464 ♦ resources
Provides international forums to disseminate informa- TASH is an international association of people with dis-
tion on recent advances in both clinical and basic sci- abilities, their family members, other advocates, and
ence pertinent to movement disorders, to encourage professionals Wghting for a society in which inclusion
research related to movement disorders; and to en- of all people in all aspects of society is the norm. It ac-
hance the education of physicians and the quality of tively promotes the full inclusion and participation of
care of patients with movement disorders. persons with disabilities in all aspects of life.
1-414-276-2145 1-410-828-8274, ext. 101
1-414-276-2146 (Fax) 1-410-828-6706 (Fax)
www.movementdisorders.org/ www.tash.org/
[email protected] [email protected]
National Dissemination Center for Children with Dis- United Cerebral Palsy Association (UCPA)
abilities (NICHCY) 1660 L Street, NW
P.O. Box 1492 Washington, DC 20036-5602
Washington, DC 20013-1492 The mission of UCPA is to advance the independence,
1-800-695-0285 (V/TTY) productivity, and full participation in society of
1-202-884-8441 (Fax) people with cerebral palsy and other disabilities.
www.nichcy.org 1-800-USA-5UCP
1-202-776-0414 (Fax)
National Organization on Disability (NOD) www.ucpa.org/
910 Sixteenth Street, NW [email protected]
Suite 600
Washington, DC 20006
A national disability network organization concerned Americans with Disabilities Act
with all disabilities, age groups, and disability issues.
(ADA)
NOD works to promote the full and equal participa-
tion for people with disabilities in all aspects of life. Disability Rights Education and Defense Fund
1-202-293-5960 ADA Technical Assistance Information Line
1-202-293-7999 (Fax) 1-800-466-4232 (V/TT)
www.nod.org/
[email protected] Equal Employment Opportunity Commission
1-800-669-3362 (V)
National Rehabilitation Association (NRA) 1-800-800-3302 (TT)
633 S Washington Street
Alexandria, VA 22314 Job Accommodation Network
NRA was founded in 1925 to promote the rehabilitation 1-800-526-7234 (V/TT)
of persons with disabilities through legislative activ- 1-800-232-9675 (V/TT; ADA Information)
ity, professional development, and public education. U.S. Architectural and Transportation Barriers Compli-
1-703-836-0850 ance Board—Access Board
1-703-836-0848 (Fax) 1-800-872-2253 (V)
www.nationalrehab.org/ 1-202-728-5483 (TT; in DC metro area)
[email protected]
U.S. Department of Housing and Urban Development—
SCOPE HUD User
Scope is a disability organization whose focus is people 1-800-245-2691 (V)
with cerebral palsy in England and Wales, providing
information and education. U.S. Department of Justice
www.scope.org.uk/ ADA information line
1-202-514-0301
TASH—Disability Advocacy Worldwide www.ada.gov
29 W. Susquehanna Ave.
Suite 210
Baltimore, MD 21204
resources ♦ 465
Assistive Technology/Devices National Association of Parents of the Visually Impaired

1-800-562-6265 (V)
Able Net
1-800-322-0956 (V) National Federation of the Blind
www.nfb.org
ABLEDATA
1-800-227-0216 National Library Service for the Blind and Physically
www.abledata.com Handicapped
www.loc.gov/nls
Adaptive Mall
1-800-371-2778 National Society to Prevent Blindness
www.adaptivemall.com 1-800-331-2020 (V)
Apple OYce for Special Education Material Recording for the Blind
1-800-732-3131, ext. 950 (V) 1-800-221-4792 (V)
AT&T Accessible Communications Product Center

1-800-233-1222 (V) Communication Disorders
1-800-833-3232 (TT)
National Institute on Deafness and Other Communica-
Family Center on Technology and Disability (FCTD) tion Disorders Clearinghouse
www.fctd.info 1-800-241-1044 (V)
1-800-241-1055 (TT)
IBM Special Needs Information Referral Center
1-800-426-4832 (V)
1-800-284-4833 (TT) Deafness/Hearing Impairments
TECHKNOWLEDGE American Society for Deaf Children
1-800-726-9119 (V) 1-800-942-2732 (V/TT)
1-404-894-4960 (V; in Atlanta metro area) www.deafchildren.org/home/home.html
Beginnings
Blindness/Visual Impairment 1-800-541-HEAR (V/TTY)
American Council of the Blind Better Hearing Institute

1-800-424-8666 (V/TT) 1-800-327-9355 (V/TT)
www.acb.org www.betterhearing.org
American Foundation for the Blind Deafness Research Foundation

1-800-232-5463 (V) 1-800-535-3323 (V/TT)
www.afb.org 1-212-684-6559 (V/TT; in New York City)
Blind Children’s Center Hear Now

1-800-222-3566 (V) 1-800-648-4327 (V/TT)
1-800-222-3567 (V; in CA)
John Tracy Clinic
Job Opportunities for the Blind 1-800-522-4582 (V/TT)
1-800-638-7518 (V) 1-213-748-5481 (V; in Los Angeles)
1-410-659-9314 (V; in MD) 1-213-747-2924 (TT)
www.johntracyclinic.org
Lighthouse National Center for Vision and Child Devel-
opment National Association of the Deaf
1-800-334-5497 (V) www.nad.org
1-212-808-5544 (TT; in New York City)
National Hearing Aid Society
National Association for Visually Handicapped 1-800-521-5247 (V)
www.navh.org
466 ♦ resources
National Institute on Deafness and Other Communica- gifted. Excellent site for up-to-date information on
tion Disorders Clearinghouse Individuals with Disabilities Education Act (IDEA).
1-800-241-1044 (V) www.cec.sped.org
1-800-241-1055 (TT)
Disability Rights, Education and Defense Fund (DREDF)
Where Do We Go from Hear? A national law and policy center dedicated to protecting
www.gohear.org/index.html and advancing the civil rights of people with disabilities.
Excellent site for recent legislative activities relating to
Individuals with Disabilities Education Act (IDEA).
Dental Care www.dredf.org
Video titled, “Your Smile” HEATH Resource Center of the American Council on
Write or call: Education
HMS School for Children with Cerebral Palsy A national clearing house on postsecondary education for
4400 Baltimore Avenue individuals with disabilities. Excellent site for infor-
Philadelphia, PA 19004 mation and referral services for parents with children
1-215-222-2566 with disabilities.
1 DuPont Circle, Suite 800
Washington, DC 20036-1193
Developmental Disability (DD)
1-800-544-3284 (V/TT)
Councils 1-202-939-9320 (V/TT; in DC metro area)
www.acenet.edu/programs/HEATH/home.html
National Association of Councils on Developmental Dis-
abilities National Center for Research in Vocational Education
Each state has a “DD” council that serves as an advocate 1-800-762-4093 (V)
for persons with developmental disabilities. The Na-
tional Association of Councils on Developmental Dis- National Center for School Leadership
abilities Web site has a link to councils in all 50 states. 1-800-643-3205 (V)
www.nacdd.org
National Challenged Homeschoolers Associated Net-
work (NATHHAN)
Disability Awareness Christian Families homeschooling special needs children
P.O. Box 39
Kids on the Block Porthill, ID 83853
1-800-368-5437 (V) 1-208-267-6246
www.kotb.com 1-208-267-6246 (Fax)
www.nathhan.com
[email protected]
Education
National Committee for Citizens in Education Clearing-
American Association for Vocational Instructional house
Materials 1-800-638-9675 (V)
1-800-228-4689 (V) 1-800-532-9832 (V; Spanish)
Association for Childhood Education International National Dissemination Center for Children with Dis-
1-800-423-3563 (V) abilities
Center for the Study and Advancement of Disability Pol- The dissemination center is funded by the OYce of Spe-
icy (CSADP), Special Education, 2003. cial Education Programs (OSEP) at the U.S. Depart-
www.disabilitypolicycenter.org ment of Education to connect individuals with the re-
sources they need in their eVorts on behalf of children
Council for Exceptional Children (CEC) with disabilities.
An international organization that is dedicated to im- www.nichcy.org
proving educational outcomes for individuals with
exceptionalities, students with disabilities, and/or the National Home Education Network
Provides information, fosters networking, and promotes
resources ♦ 467
public relations for local and state homeschooling or- National Industries for the Severely Handicapped
ganizations. Has a special needs section on its Web site. (NISH)
www.nhen.org 2235 Cedar Lane
Vienna, VA 22182
OYce of Special Education and Rehabilitative Services 1-703-560-6800 (V/TDD)
(OSERS)
Administering programs and projects relating to free, ap-
propriate public education of all children, youth, and Financial Counseling
adults with disabilities, from birth through age 21.
www.ed.gov/about/oYces/list/osers/index.html ABC’s of Special Needs Planning Made Easy, by Bart
Stevens, ChLAP
PACER Center Barton Stevens Special Needs Planning, LLC, Phoenix,
A nonproWt organization that provides workshops and AZ, 2002
individual assistance and disseminates materials to
help parents become informed and eVective represen- Estate Planning for Special Needs
tatives for their children with disabilities in early- www.metlife.com/desk
childhood, school-age, and vocational settings. Excel- 1-877-638-3375
lent site for publications on support services.
GO GET BENEFITS: An excellent reference guide that
www.pacer.org
teaches you your health care and disability rights. Ms.
The Special Ed Advocate Guren, who is disabled herself, writes a resource book
This organization provides parents, educators, attorneys, that can only help the user.
and other helping professionals with the information Nancy Guren
they need to be eVective advocates for special needs 10714 Kings Riding Way
children. This site contains current articles, cases, and T-3
links related to special education. Excellent site for Rockville, MD 20852
current cases on special education issues. [email protected]
www.wrightslaw.com
National Foundation for Consumer Credit
U.S. OYce of Educational Research and Improvement 1-800-388-2227 (V)
1-800-424-1616 (V)
Health Care
Employment Children’s Hospice International
Equal Employment Opportunity Commission P.O. Box 20050
1-800-669-3362 (V) Alexandria, VA 22320-1050
1-800-800-3302 (TT) 1-800-242-4453 (V)
1-703-684-0330 (V)
Job Accommodation Network (JAN)
West Virginia University
918 Chestnut Ridge Road, Suite 1 Independent Living
Morgantown, WV 26505
Accent on Living Magazine
1-800-526-7234 (V/TDD)
P.O. Box 700
1-304-293-7186 (V)
Bloomington, IL 61702
Job Opportunities for the Blind 1-309-378-2961
1-800-638-7518 (V)
Independent Living Research Utilization Program
1-410-659-9314 (V; in MD)
(ILRU)
Mainstream, Inc. 2323 S. Shepherd Street, Suite 1000
3 Bethesda Metro Center, Suite 830 Houston, TX 77019
Bethesda, MD 20814 1-713-520-0232 (V)
1-301-654-2400 (V/TDD) 1-713-520-5136 (TDD)
468 ♦ resources
National Council on Independent Living (NCIL) Disability Rights Education and Defense Fund (DREDF)
2111 Wilson Boulevard, Suite 405 2212 Sixth Street
Arlington, VA 22201 Berkeley, CA 94710
1-703-525-3406 (TT) 1-800-466-4232 (V)
www.ncil.org 1-510-644-2555 (V)
1-510-644-2556 (V/TDD)
Society for the Advancement of Travel for the Handi-
capped and Elderly Legal Rights of the Catastrophically Ill and Injured:
347 5th Avenue, Suite 610 A Family Guide
New York, NY 10016 Joseph Romano
1-212-447-7284 (V) www.josephromanolaw.com
[email protected]
Information Ser vices National Association of Protection and Advocacy Sys-

tems (NAPAS)
ACCESS ERIC Has background information and links to all state Protec-
1-800-538-3742 (V) tion and Advocacy (P&A) systems on its Web site.
Every state has a P&A agency which provides advo-
BRS Information Technologies
cacy and legal services to persons with disabilities,
1-800-289-4277 (V)
usually for free.
Date Able www.napas.org
1-301-657-DATE (in Chevy Chase, MD)
National Center for Law and Deafness
Easter Seal Society Gallaudet University
1-800-221-6827 (V) 800 Florida Avenue, NE
1-312-726-4258 (TT; in Chicago metro area) Washington, DC 20002
1-202-651-5373 (V/TDD)
National Center for Youth with Disabilities
1-800-333-6293 (V) Partners in Policymaking Program
1-612-624-3939 (TT; in Minneapolis metro area) This is an innovative leadership training program for
adults with disabilities and for parents of young chil-
National Information Clearinghouse for Infants with dren with developmental disabilities.
Disabilities and Life-Threatening Conditions www.partnersinpolicymaking.com
1-800-922-9234, ext. 201 (V/TT)
1-800-922-1107, ext. 201 (V/TT; in SC)
Medical Home
National Rehabilitation Information Center
1-800-346-2742 (V/TT) National Center of Medical Home Initiatives for Chil-
www.naric.com dren with Special Needs
The state resource pages provide information on state
ODPHP National Health Information Center
medical home initiatives, key partners, related grant ac-
1-800-336-4797 (V)
tivities, and local resources for families and providers.
OYce of Minority Health Resource Center www.medicalhomeinfo.org/resources/state.html
1-800-444-6472 (V)
Mental Retardation
Legal Assistance American Association on Mental Retardation
American Bar Association Center on Children and 1-800-424-3688 (V)
the Law www.aamr.org
1800 M Street NW, Suite 2005
The Arc: National Organization on Mental Retardation
500 East Border Street, Suite 300
1-202-331-2250 (V)
Arlington, TX 79010
resources ♦ 469
1-817-261-6003 (V) 1-800-841-8251 (V)

1-817-277-0553 (V/TDD) 1-212-420-0776 (V)
www.thearc.org
Siblings Information Network
A. J. Pappanikou Center on Special Education and
Nutrition Rehabilitation
62 Washington Street
Axcan Scandipharm Inc. Middletown, CT 06457-2844
1-800-4-SCANDI 1-203-244-7500 (V)
(1-800-472-2634) 1-203-344-7590 (V/TDD)
Beech Nut Nutrition Hotline
1-800-523-6633 (V) Professional Organizations
Gerber Consumer Information American Academy of Cerebral Palsy and Developmental
1-800-443-7237 (V) Medicine (AACPDM)
Mead-Johnson 6300 North River Road
1-800-BABY 123 Suite 727
(1-800-222-9123) Rosemont, IL 60018-4226
This organization is a multidisciplinary scientiWc society
Nestle devoted to studying cerebral palsy and other child-
1-800-422-ASK2 hood onset disabilities, to promoting professional ed-
(1-800-422-2752) ucation for the treatment and management of these
conditions, and to improving the quality of life for
North American Growth and Cerebral Palsy Program
people with these disabilities.
www.med.virginia.edu/~mon-grow/
1-847-698-1635
Ross Laboratories 1-847-823-0536 (Fax)
1-800-FORMULA [email protected]
(1-800-367-6852) http://aacpdm.org/
American Academy of Physical Medicine & Rehabilita-

Parents and Family Care tion (AAPMR)
One IBM Plaza
Families of Children under Stress (FOCUS) Suite 2500
P.O. Box 941445 Chicago, IL 60611-3604
Atlanta, GA 31141 The American Academy of Physical Medicine & Rehabili-
1-404-270-5072 (V) tation is a national medical society, representing more
than 6,000 physicians who are specialists in the Weld
National Parent Network on Disabilities
of physical medicine and rehabilitation. The associa-
1600 Prince Street, Suite 115
tion provides continuing education opportunities,
Alexandria, VA 22314
increases awareness of the specialty, and advocates
1-703-684-6763 (V/TT)
public policies.
Parent Care, Inc. 1-312-464-9700
9041 Colgate Street 1-312-464-0227 (Fax)
Indianapolis, IN 46268-1210 www.aapmr.org/
1-317-872-9913 (V) [email protected]
Parent to Parent American Congress of Rehabilitation Medicine (ACRM)

1-404-451-5482 (V; in Atlanta metro area) 5987 East 71st Street
Suite 111
Siblings for SigniWcant Change Indianapolis, IN 46220-4049
United Charities Building The mission of the American Congress of Rehabilitation
105 East 22nd Street, Room 710 Medicine (ACRM) is to promote the art, science, and
New York, New York 10010 practice of rehabilitation care for people with disabilities.
470 ♦ resources
1-317-915-2250 National Association for Home Care (NAHC)

1-317-915-2245 (Fax) 228 Seventh Street, SE
www.acrm.org/ Washington, DC 20003
[email protected] NAHC is a trade association that represents the interests
of more than 6,000 home care agencies, hospices, and
American Health Care Association (AHCA)
home care aide organizations. Its members are prima-
1201 L Street NW
rily corporations or other organizational entities in
addition to state home care associations, medical
The American Health Care Association (AHCA) is a fed-
equipment suppliers, and schools.
eration of 50 state health organizations, together rep-
1-202-547-7424
resenting nearly 12,000 nonproWt and for-proWt as-
1-202-547-3540 (Fax)
sisted living, nursing facility, long-term care, and
www.nahc.org/
subacute care providers that care for more than one
[email protected]
million elderly and disabled individuals nationally.
1-202-842-4444 National Institute of Neurological Disorders and Stroke
1-202-842-3860 (Fax) (NINDS)
www.ahca.org/ NIH Neurological Institute
P.O. Box 5801
American Occupational Therapy Association (AOTA)
Bethesda, MD 20824
4720 Montgomery Lane
1-800-352-9494
Bethesda, MD 20814-3425
www.ninds.nih.gov/
1-301-652-2682, ext. 2012
1-301-652-7711 (Fax) National Organization for Rare Disorders (NORD)
www.aota.org/ 100 Route 37
[email protected] P.O. Box 8923
New FairWeld, CT 06812-8923
American Physical Therapy Association (APTA)
An organization with a database on over 1,000 rare dis-
1111 North Fairfax Street
eases, with educational materials for parents and
Alexandria, VA 22314
health professionals. It also has links to parent sup-
1-703-684-2782
port groups and hundreds of organizations that can
1-703-684-7343 (Fax)
help families deal with these rare conditions.
www.apta.org/
1-203-746-6518
[email protected]
1-203-746-6481 (Fax)
Association of Rehabilitation Nurses (ARN) www.rarediseases.org
700 W. Lake Avenue [email protected]
Glenview, IL 60025-1485
Rehabilitation Engineering and Assistive Technology So-
ARN’s mission is to promote and advance professional
ciety of North America (RESNA)
rehabilitation nursing practice through education,
1700 North Moore Street
advocacy, collaboration, and research to enhance
Suite 1540
the quality of life for those aVected by disability and
Arlington, VA 22209-1903
chronic illness.
RESNA is as an interdisciplinary society that promotes
1-800-229-7530
the transfer of science, engineering, and technology
1-847-375-4777 (Fax)
to meet the needs of individuals with disabilities.
www.rehabnurse.org/
1-703-524-6686
[email protected]
1-703-524-6630 (Fax)
National Academy for Child Development (NACD) www.resna.org/
PO Box 380 [email protected]
Huntsville, UT 84317
1-801-621-8606
[email protected]
resources ♦ 471
Rehabilitation Independence Dogs

1-610-358-2723 (in Philadelphia metro area)
Canadian Rehabilitation Council for the Disabled (CRCD)
45 Sheppard Avenue East, Suite 801
Willowdale, Ontario Special Needs Adoption
CANADA M2N 5W9
Adoption Exchange Association
1-416-250-7490 (V/TDD)
8015 Corporate Drive
Clearinghouse for Rehabilitation and Technology Suite C
Information Baltimore, MD 21236
1-800-638-8864 (V) This private, nonproWt association operates an on-line
1-800-852-2892 (TT) national photolisting of children called AdoptUSKids.
The photolisting can be viewed on-line at
National Clearinghouse of Rehabilitation Training Materials www.adoptuskids.org
1-800-223-5219 (V/TT) 1-888-200-4005
Children Awaiting Parents, Inc.

Religious Organizations 700 Exchange Street
Rochester, NY 14608
Christian Council on Persons with Disabilities
This organization helps with special needs adoptions and
36272 County Road 79
publishes the CAP Book, which has photolistings of
Warsaw, OH 43844
children in the US who need adoptive families.
1-614-327-2311 (V)
1-716-232-5110
Keshet
National Adoption Information Clearinghouse (NAIC)
Jewish Parents of Children with Special Needs
This provides a comprehensive resource on all aspects of
3210 Dundee Road
adoption.
Northbrook, IL 60062
http://naic.acf.hhs.gov/
1-708-205-0274 (V)
1-800-526-0857 (TDD relay voice)
1-800-526-0844 (TDD) Sports, Travel, and Recreation
In addition to the national organizations listed below,
Respite Care you can call the Department of Tourism and Travel or the
Department of Commerce in your state, and ask for in-
ARCH National Resource Center for Respite Crisis Care
formation about accessible services, accommodations,
Services
attractions, and tourist destinations.
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514 Adventures in Movement for the Handicapped, Inc.
1-800-473-1727 (V) 1-800-332-8210 (V)
1-919-490-5577 (V/TDD) 1-425-226-7357
American Camping Association

Ser vice Dogs www.acacamps.org (click on Find a Camp, then on Spe-
cial Needs)
Canine Partners for Life
1-610-869-4902 Boy Scouts of America/Scouts with Special Needs
1325 West Walnut Hill Lane, P.O. Box 152079
Delta Society
Irving, TX 75015-2079
580 Naches Avenue SW
1-214-580-2000 (V)
Suite 101
Renton, WA 98055 Echoing Hills Village, Inc.
1-425-226-7357 36272 County Road 79
Warsaw, OH 43844
Fidos for Freedom
1-614-327-2311 (V)
1-410-880-4178 (in MD)
472 ♦ resources
Girl Scouts of the USA/“Serving Girls with Disabilities” 560 Sylvan Avenue
Program Englewood CliVs, NJ 07632
420 5th Avenue This is an organization of attorneys who specialize in so-
New York, NY 10018 cial security.
1-800-223-0624 (V) 1-800-431-2804
1-212-852-8000 (V) 1-201-567-1542 (Fax)
www.nosscr.org
Magic Foundation
1-800-362-4423 (V) Social Security Administration
1-800-772-1213 (V)
Mobility International, USA
1-800-325-0778 (TT)
P.O. Box 10767
1-800-392-0812 (TT; in MD)
Eugene, OR 97440
1-503-343-1284 (V/TDD) Zebley Implementation Project
1-800-523-0000 (V)
North American Riding for the Handicapped, Inc.
1-215-893-5356 (V; in Philadelphia metro area)
1-800-369-7433 (V)
Special Olympics
Transition to Adulthood
1133 19th Street NW
Washington, DC 20036 Center for Children with Special Needs
1-800-700-8585 (V) Children’s Hospital and Regional Medical Center
1-202-628-3630 (V/TDD) Seattle, WA 98101
www.specialolympics.org www.cshcn.org
Sunshine Foundation Disabled and Alone

1-800-767-1976 (V) Life Services for the Handicapped, Inc.
352 Park Avenue South, Suite 703
Travel Information Service
New York, NY 10010-1709
Moss Rehabilitation Hospital
1-212-532-6740/1-800-995-0066
1200 West Tabor Road
1-212-532-3588 (Fax)
Philadelphia, PA 19141
http://disabledandalone.org/
1-215-456-9600 (V)
[email protected]
1-215-456-9602 (V/TDD)
National Collaborative on Workforce and Disability
United States Cerebral Palsy Athletic Association
This is a source of information about employment for
(USCPAA)
youth with disabilities.
25 W. Independence Way
www.ncwd-youth.info
Kingston, RI 02881
1-401-792-7130 The Consortium for Children and Youth with Disabili-
[email protected] ties and Special Health Care Needs
Health care transitions
Very Special Arts
http://hctransitions.ichp.edu
1331 F Street NW, Suite 800
Washington, DC 20004 The Healthy and Ready to Work (HRTW) National
1-800-933-8721 (V) Center
1-202-628-2800 (V) To stay healthy, young people need an understanding of
1-202-737-0645 (V/TDD) their health and to participate in their health care de-
cisions. The center provides information and connec-
tions to health and transition expertise nationwide.
Supplemental Security Income www.hrtw.org/
(SSI)
National Organization of Social Security Claimants Rep-
resentatives (NOSSCR)
Recommended
Reading
and Toys,
and Where
to Go to Chat
with Others
There are many excellent available books for children with V. Mark Durand, Ph.D., Sleep Better! A Guide to Improving
disabilities and their parents. The following lists cite read- Sleep for Children with Special Needs
ing materials that we think are good, along with some toy Richard M. Eckstein, Handicapped Funding Directory: A
manufacturers that make toys that appeal to children with Guide to Sources of Funding in the United States for Pro-
disabilities. grams and Services for the Disabled, seventh edition
One resource that we want to recommend strongly for Lydia Fegan, Anne Rauch, and Wendy McCarthy, Sexual-
parents of children with disabilities is the monthly maga- ity and People with Intellectual Disability
zine Exceptional Parent. This magazine provides up-to- Dr. Richard Ferber, Solve Your Child’s Sleep Problems
date information on resources for parents and children, Nancie Finnie, Handling the Young Cerebral Palsied Child
and has annual issues dedicated to educational concerns, at Home
the most recent legal changes pertaining to children with Jacqueline Freedman and Susan Gersten, Traveling Like
special needs, and other subjects of interest. A subscrip- Everyone Else: A Practical Guide for Disabled Travelers
tion to the magazine entitles you to receive the Annual John M. Freeman, M.D., Eileen P. G. Vining, M.D., and
Resource Guide. Request a complimentary copy and sub- Diana J. Pillas, Seizures and Epilepsy in Childhood: A
scription information from: Guide for Parents, third edition
Exceptional Parent James J. Gallagher and Peter W. Vietze, Families of Handi-
EP Global Communications capped Persons
551 Main Street Robert Gaylord-Ross, ed., Integration Strategies for Stu-
Johnstown, PA 15901 dents with Handicaps
1-877-372-7368 Elaine Geralis, ed., Children with Cerebral Palsy: A Parent’s
www.eparent.com Guide
[email protected] Helen Harrison and Ann Kositsky, R.N., The Premature
Baby Book: A Parent’s Guide to Coping and Caring in the
First Years
Books for Parents Neil J. Hochstadt and Diane M. Yost, eds., The Medically
Complex Child: The Transition to Home Care
Winifred Anderson, Stephen Chitwood, and Diedre Hay-
Stanley D. Klein, Ph.D., and John D. Kemp, eds., ReXec-
den, Negotiating the Special Education Maze: A Guide
tions from a DiVerent Journey. What Adults with Disabil-
for Parents and Teachers, second edition
ities Want All Parents to Know
Mark L. Batshaw, M.D., Children with Disabilities, fifth
Harold S. Kushner, When Bad Things Happen to Good
edition.
People
Eugene E. Bleck, M.D., and Donald A. Nagel, M.D., eds.,
Ginny LaVine, Computer Access/Computer Learning: A Re-
Physically Handicapped Children: A Medical Atlas for
source Manual in Adaptive Technology
Children
Jane Leonard, Margaret Myers, and Sherri Cadenhead,
Charles R. Callanan, Since Owen: A Parent-to-Parent Guide
Keys to Parenting a Child with Cerebral Palsy
for Care of the Disabled Child
Barbra Lindberg, Understanding Rett Syndrome
Lynn Clark, Ph.D., SOS! Help for Parents
474 ♦ recommended reading and toys
Debra J. Lobato, Brothers, Sisters, Special Needs Ages 4–8

Mary Male, Special Magic: Computers, Classroom Strategies, Mary Elizabeth Anderson, Taking Cerebral Palsy to School
and Exceptional Students Jamee Heelan, Rolling Along: The Story of Taylor and His
Charles T. Mangrum II and Stephen S. Strichart, eds., Pe- Wheelchair
terson’s Guide to Colleges with Programs for Learning Dis- Paul Pimm, Living with Cerebral Palsy
abled Students Ron Taylor, All by Myself
William C. Mann and Joseph P. Lane, Assistive Technology
Ages 9–12
for Persons with Disabilities: The Role of Occupational
Thomas Berman, Going Places: Children Living with Cere-
Therapy
bral Palsy
Carolyn Martin, I Can’t Walk, so I’ll Learn to Dance
Steven Mendelsohn, Reducing the Cost of Disability: A Guide Marilyn Gould, Golden DaVodils
to Financial and Tax Planning for Disabled People and Shelley Nixon, From Where I Sit: Making My Way with
Their Families Cerebral Palsy
Robert Moss, M.D., Why Johnny Can’t Concentrate: Cop- Doris Sanford, Yes, I Can! Challenging Cerebral Palsy
ing with Attention DeWcit Problems I’m Joshua and Yes I Can can no longer be ordered from
Christopher Nolan, Under the Eye of the Clock Vantage Print. It’s out of print, but copies are available
Arthur Prensky and Helen Palkes, Care of the Neurologically by contacting the author directly.
Handicapped Child Joan L. Whinston
Wendy Roth and Michael Tompane, Easy Access to National 406 Viking Lane
Parks Cherry Hill, NJ 08003
Karen Schwier and Dave Hinsburger, Sexuality—Your Sons 1-856-428-8311
and Daughters with Intellectual Disabilities [email protected]
Victoria Shea and Betty Gordon, Growing UP: A Social
and Sexual Education Picture Book for Young People with Toys
Mental Retardation
Larry Silver, M.D., The Misunderstood Child: A Guide for There are companies that specialize in toys for disabled
Parents of Learning Disabled Children children. The individual interests of the reader will vary,
Charles T. Straughn II and Marvelle S. Colby, Lovejoy’s Col- but a few of the larger sites are listed here. You can surf
lege Guide for Learning Disabled Students the net for days and probably not see all the sites avail-
Andrew P. Thomas, Martin C. O. Bax, and Diane P. L. able.
Smyth, The Health and Social Needs of Young Adults with By far, the most informative list of toys and products
Physical Disability that is available for the child with disabilities is this toy cat-
Charlotte E. Thompson, M.D., Raising a Handicapped alogue for children with special needs from Wisconsin
Child: A Helpful Guide for Parents of the Physically Dis- First Step: www.nas.com/downsyn/toy.html
abled Other useful sites include: www.Disabilityworld.com;
Christine Wright, O.T.R., and Mari Nomura, O.T.R., www.enablingdevices.com; www.independentliving.com;
From Toys to Computers www.kidability.com; www.Gbkids.com; www.iphope.com/;
Brookes Publishing Company publishes many books www.nraf-rehabnet.org/
on a variety of disabilities, including cerebral palsy,
Adaptive Clothing
Down syndrome, mental retardation, autism, etc.
Special Clothes, Inc.
PO Box 10624, Baltimore, MD 21285-0624. www
www.special-clothes.com
.brookespublishing.com
DisABILITIESBOOKS.com “sells top quality books, and Adaptive Toys for Special Needs Disabled Children:
videotapes, and provides information about products, www.scienceshareware.com/toys.htm
services and resources.” It also features a used equip-
ment exchange bulletin. Family Village
www.familyvillage.wisc.edu/at/adaptive-clothing.html
Books for Children

Michelle Emmert, I’m the Big Sister Now
Joan Fassler, Howie Helps Himself
Mel Levine, Keeping Ahead in School
recommended reading and toys ♦ 475
Where to Go to Chat with Others • Cerebral Palsy Webring Chat

www.geocities.com/HotSprings/Spa/1778/cpringchat.html
• Brain-injured child
http://health.groups.yahoo.com/group/BrainInjuredChild/ • CPPARENT—For parents who have a child with
KidPower Cerebral Palsy.
http://groups.yahoo.com/group/KidPower/ http://maelstrom.stjohns.edu/archives/cpparent.html
• Cerebral Palsy Club • Massachusetts General Hospital Department of Neu-

http://groups.yahoo.com/group/cerebralpalsyclub/ rology Cerebral Palsy Web Board
Parents of any children are welcome to chat here http://neuro-www.mgh.harvard.edu/forum/
CerebralPalsyMenu.html
• Cerebral Palsy Network Chat Pad
www.geocities.com/Heartland/Plains/8950/enter.html
Index
Page numbers in italic type indicate illustrations; those in boldface type indicate Encyclopedia entries; those followed
by t indicate tables.
ABC’s of Special Needs Planning Made Easy, 467 115–18; diplegia in, 161–65; growth spurt in, 38, 158;
Abduction pillow, 368–70 hemiplegia in, 141–43; hip problems in, 165; indepen-
ABELDATA, 304, 465 dence of, 161–62, 192, 200–205; with mild cognitive
ABI vest®, 355 and physical involvement, 203; mobility of, 163; with
Able Net, 465 moderate cognitive and physical involvement, 203;
Abstract thinking ability, 116, 117 with normal cognition and mild physical involve-
Accent on Living magazine, 467 ment, 200–201; with normal cognition and moderate
ACCESS ERIC, 468 physical involvement, 201–2; with normal cognition
Accessibility: of buildings, 262; home modiWcations for, and severe physical involvement, 202; personality de-
214, 301, 302–4; of public accommodations, 285; of velopment in, 192; puberty in, 38, 89–90; quadriple-
transportation, 284–85 gia in, 192–205; refusal of medical care by, 162; re-
Accident prevention, 42, 147–48 specting privacy of, 202; service dogs for, 162; with
Acetabular osteotomy, 176, 196, 197, 433–34, 434 severe cognitive and physical impairment, 203–5; sex-
Acetaminophen (Tylenol), 196 uality of, 115–16, 202; sexual maturation of, 38–39;
Achilles tendon: AFO for lengthening of, 130–32, 135, surgery for, 142–43; transition to young adulthood,
453–54; overlengthened, 386; surgical lengthening of, 207–8, 218–20
132–33, 135–36, 140–41, 142, 155, 183, 191, 198, 353, 353– Adolescent specialist, 238
54, 454; tight, 129, 135, 184, 353; toe walking due to Adoption Exchange Association, 471
contracture of, 453, 453–54 Adoption of children with special needs, 280–81;
Adapted transportation, 211–12 resources for information about, 471
Adaptive Clothing, 474 Adrenoleukodystrophy, 426
Adaptive equipment: for child aged four to six, 34–35; for Adult developmental issues, 118–20
child with quadriplegia, 172–75; Wnancing of, 175 Adult with CP, 207–26; career choices for, 116–18, 325–26;
Adaptive Mall, 465 care for medical problems of, 212–13, 217, 222–23; with
Adaptive skills. See Fine motor skills disabilities, 214–17; discrimination against, 209–10;
Adaptive toileting, 346 employment of, 213–14; foster care for, 216, 281; with
Adaptive Toys for Special Needs Disabled Children, 474 functional limitations, 210–14; group environments
Adderall, 57 for, 208; guardianship of, 215, 275–78, 276t; with im-
Adducted thumb, 139, 383, 383–84 pairments, 208–10; in late life, 225–26; living arrange-
ADELI® suit, 451–52 ments for, 209–10, 211–12, 215–16, 281–82; marriage of,
Adenoid facies, 86 55, 118, 209, 211, 214; in midlife, 223–25; self-image of,
Adenoids: in obstructive sleep apnea, 85, 86; removal of, 86 208; sexuality of, 118, 120, 222; transition of medical
Adolescent (ages 13–18): body mechanics for dressing of, services for, 455–56; in young adulthood, 207–8, 217–23
300; career counseling for, 39; development of, 38–39, Advance directives, 94
478 ♦ index
Adventures in Movement for the Handicapped, Inc., 471 Anencephaly, 429

Advil (ibuprofen), 192, 196, 224 Angelman syndrome, 377
Advocacy groups, 463–64 Anger, 203
Advocates, 118, 221, 269–75, 294; case managers as, 272; Ankle-foot orthosis (AFO), 139–40, 314, 364–66, 365, 418;
child protection, 272–73; citizens as, 271; legal, 270; for Achilles tendon lengthening, 130–32, 135, 184; ado-
legislative, 273–74; parents as, 270–71; press as, 271– lescent’s resistance to, 162; care and maintenance of,
72; protection & advocacy agencies, 270; self-advocate, 131, 365–66; for child with diplegia, 149, 150, 151, 155,
274–75 159, 164; for child with quadriplegia, 177, 182, 191, 198;
Aerophagia, 355 for Xat foot, 150, 160, 184–85; removal of, 140; shoes
AFO. See Ankle-foot orthosis for use with, 150, 320, 364–65; for tibialis posterior
A-frame brace, 368–70 spasticity, 131–32, 448; for toe walking, 453–54; types
Agenesis of corpus callosum, 354, 354–55 of, 131, 364, 365
Aging, 207, 224–26. See also Adult with CP Annuities, 293
Agyria, 393, 394 Anterior midline defects, 356, 356
Aicardi syndrome, 354, 354–55 Antibiotics, for otitis media, 70, 71
Air conduction, 67 Anticholinergic medications, for drooling, 83, 395
Air swallowing, 355 Antiepileptic drugs (AEDs), 51–52, 356–57; drooling and,
Airway clearance, 355 82; menstruation and, 90; osteopenia and, 81
Airway obstruction, 41; in obstructive sleep apnea, 85–86, Anti-inXammatory medications, 191–92, 196, 224, 225, 375
430–31; stridor due to, 421; tracheostomy for, 83–84 Apgar score, 10
Albuterol (Proventil, Ventolin), 84 Apple OYce for Special Education Material, 465
Alcohol blocks, 135 Appropriate for gestational age (AGA), 407
Allen cards, for vision screening, 63 Aquatherapy, 451
Allergy: to latex, 422; to milk, 356 Aqueductal stenosis, 58
Alternative disposition resolution (ADR), 270 Arc, the: National Organization on Mental Retardation,
Amblyopia, 62, 64, 355, 355–56 254, 463, 468–69
American Academy of Cerebral Palsy and Developmental ARCH National Resource Center for Respite Crisis Care
Medicine, 356, 469 Services, 471
American Academy of Pediatrics, 43, 233, 335, 423 Arch supports, 135, 367–68
American Academy of Physical Medicine & Rehabilita- Arm braces, 137, 177
tion, 469 Armed Forces Retirement BeneWts program, 287
American Association for Vocational Instructional Arm pronation, 137
Materials, 466 Arteriovenous malformation (AVM), 357, 357
American Association of People with Disabilities, 463 Arthritis, 225
American Association of Rehabilitation Nurses, 470 Arthrodesis, triple, 140, 141, 142, 160, 191
American Association on Mental Retardation, 468 Arthrogryposis, 180, 357
American Bar Association Center on Children and the Asphyxia: at birth, 4, 10; epilepsy and, 47; hearing loss
Law, 468 and, 66; in infancy and early childhood, 11; mental
American Camping Association, 471 retardation and, 56; quadriplegia and, 168
American Congress of Rehabilitation Medicine, 469–70 Aspiration, 189; during feeding, 41, 74–75, 169; of saliva,
American Council of the Blind, 465 83–84; tests for, 75, 83; treatment of, 75
American Foundation for the Blind, 254, 465 Aspirin, 192, 196, 224, 375
American Health Care Association, 470 Assistive technology/devices, resources for information
American Occupational Therapy Association, 470 about, 465
American Physical Therapy Association, 470 Association for Childhood Education International, 466
American Sign Language, 68 Asthma, 244, 357–58
American Society for Deaf Children, 465 Astigmatism, 62
Americans with Disabilities Act (ADA), 210, 220, 262, Asymmetric tonic neck reXex, 358, 438, 440t
278, 283–85, 283t; Information Hotline for, 304; Ataxia, 5, 6, 153, 358
resources for information about, 464 Athetosis, 4, 5, 358–59; in adult, 210; arthritis and, 225;
Aminoacidopathies, 425 hand in, 193; in quadriplegia, 6, 167; treatment of, 359
Anemia, 356 Atomoxetine (Strattera), 57
index ♦ 479
Atropine (Saltropin), 395 Bladder control problems, 41, 89, 217, 416
AT&T Accessible Communications Product Center, 465 Blind Children’s Center, 465
Attachment, infant–parent, 97, 99 “Blindism,” 65
Attention deWcit–hyperactivity disorder (ADHD), 3, 7, Blindness, 62, 65, 461; resources for information about,
41, 56–58 465. See also Visual impairment
Audiologist, 66, 235, 238 Blood transfusion, 363
Audiometric tests, 66, 234–35 Blue hands or feet, 388
Auditory evoked potentials, 410 Board certiWcation, 237–38
Auditory feedback, 362–63 Body jacket, 366, 366–67
Augmentative communication, 35, 87, 186, 359, 359–60 Body mechanics for caregivers, 300–302
Augmented feedback, 362–63 Body rocking, 60
Autism, 26, 43, 360 Bone conduction, 67
Autologous blood donation, 363 Bone densitometry, 81–82, 190, 217, 363, 363–64
Automatisms, 49 Bone malalignment, 155
Bone mineral density (BMD), low, 81–82, 190–91, 217,
Babbling, 24 431–32
Back: braces for, 366, 366–67; painful, in adults, 212, 217; Bone scan, 190
problems in child with diplegia, 156, 161; protection Boston brace, 366
for caregivers, 300–302 Botulinum toxin injections (Botox, Myobloc), 132, 135,
Back knee gait, 360–61, 361 154t, 176, 184, 200, 364, 395
Baclofen (Lioresal), 154t; intrathecal, 154, 154t, 161, 200, Bowel incontinence, 416
418–19, 419, 445 Bowel obstruction, 205
Baker lengthening of Achilles tendon, 354 Bowel training, 346
Balance problems, 3, 5, 152–53, 154; crutches and canes for, Bowlegs, 461
387, 387–88 Boy Scouts of America/Scouts with Special Needs, 471
Ballismus, 6, 427 Braces, 317–19; ankle-foot orthosis, 130–32, 139, 149–50,
Barium swallow, 75 177, 364–66, 365; back, 366, 366–67; for child with
Bathing: body mechanics for, 300–301; chair for, 175, 300, diplegia, 149, 150, 151, 155, 159; cleaning and lubrica-
301, 301; of child with cast, 337 tion of, 318; foot, 367, 367–68; hand, 127, 128, 134, 177;
Bedpan use, 339 hip, 368–70, 369; instructing others about, 319; insur-
Bedsores, 312–13, 388–89 ance coverage for, 318; knee, 141; for kyphosis, 192;
Bed wetting, 86, 89 labeling of, 318; leg, 139–40, 370–71, 371; orthodontic,
Beginnings, 465 431; for scoliosis, 192, 194, 366–67; skin care during
Behavioral audiogram, 66 use of, 318; specialists making recommendations for,
Behavioral training helmet, 362, 362–63 237; tone-reducing, 418; for turned-in foot, 130; up-
Behavior modiWcation, 60–61, 361–62 per extremity, 137, 177. See also Splints
Behavior problems, 41, 42, 59–62; medications for, 61–62 Brachialis muscle release/lengthening, 193
Benztropine (Cogentin), 83, 395 Brain: agenesis of corpus callosum, 354, 354–55; anterior
Bethanechol (Urecholine), 79 midline defects of, 356, 356; arteriovenous malforma-
Better Hearing Institute, 465 tion in, 357, 357; bleeding into, 4, 9, 12, 47, 58, 146, 168;
Biceps tendon lengthening, 139, 193 cerebellum of, 375–76, 376; cerebrum of, 376; comput-
Bi-level positive airway pressure (BiPAP), 374–75, 431 erized tomography of, 4, 12, 48, 146, 379–80; devel-
“Bili-lights,” 420 opment of, 4; disorders of cellular migration in, 393,
Biofeedback devices, 362, 362–63 393–94, 423; infections of, 424; injury of, 3, 4–5, 11, 55;
Birth control, 91–93, 222, 278 magnetic resonance imaging of, 4, 12, 48, 124, 146,
Birth injury, 9–10; medical malpractice and, 292–94 423; malformations of, 423; porencephalic cyst in, 435
Birth weight, low, 4, 9, 66, 168. See also Prematurity Brainstem auditory evoked response (BAER), 66, 235
Bisacodyl, 81 Breathing: eVect of scoliosis on, 442–43; through
Bisphosphonates, 82, 190–91, 217, 431 mouth, 85, 88; in obstructive sleep apnea, 85, 430
Bite, tonic, 72, 74 Bronchitis, 169, 189; wheezy, 357–58
Bladder: neurogenic, 429–30; urodynamic testing of, Bronchopulmonary dysplasia (BPD), 371–72
459–60 Bronchoscopy, 372, 372–73, 421–22
480 ♦ index
BRS Information Technologies, 468 Cerebellum, 375–76, 376

Bruxism, 373 Cerebral palsy (CP), 376; in adulthood, 118–20, 207–26;
Buckley Amendment (Public Law 93-380), 260, 261 athetoid, 4, 5, 6, 145; causes of, 4–5; conditions resem-
Budesonide (Pulmocort), 84 bling, 8; congenital, 3, 10; deWnition of, 3; diagnosis
Bunions, 164, 199, 373, 373–74 of, 11–12; idiopathic, 4, 5; incidence of, 3; medical
Bureau of Indian AVairs, 287 problems associated with, 3, 7–8, 41–94; prevention
Button tube, 77, 341, 342 of, 8–9; spastic, 4, 5; types of, 5–6
Cerebral palsy center, 148
Calcaneal lengthening, 191, 402–3 Cerebrospinal Xuid (CSF), in hydrocephalus, 58
Calluses on feet, 164–65, 185 Cerebrum, 376
Canadian Rehabilitation Council for the Disabled, 471 Chairs: for bathing, 175, 300, 301, 301; car seats, 173, 309–
Canes, 387, 387–88 10; for child with quadriplegia, 172–73; corner, 306–7;
Canine Partners for Life, 321, 471 for feeding, 173, 302, 306; potty, 345–46; tumble
Carbohydrate-deWcient glycoprotein syndrome (CDG), form, 306. See also Seating; Wheelchair
426 Charcot-Marie-Tooth disease, 8
Cardiac surgeon, 238 Chest physical therapy, 355
Cardiologist, 238 Chiari osteotomy, 433–34, 434
Career choices, 116–18, 325–26 Chickenpox (varicella), 380, 461; immunization against, 43
Career counseling, 39 Child abuse or neglect, 4, 11, 56, 376–77
Caregivers: basic body mechanics for, 300–302; coping Childbearing, 93, 223
strategies of, 100–101, 298–99; health of, 297; manag- Child Find, 264–65
ing the system, 321–22; resources for, 463–75; for se- Child protection advocates, 272–73
verely impaired adolescents, 202, 203–4; stressors on, Children Awaiting Parents, Inc., 471
297–98; techniques for, 302–50; working with case Children’s Hospice International, 467
manager, 322–23. See also Parents Chiropractic, 379
Carl D. Perkins Vocational and Technical Education Chiropractor, 238
Act, 261 Choking on food, 74
Carpal tunnel syndrome, 212–13, 224–25, 375 Cholesteatoma, 70
Car seats, 173, 309–10 Cholesterol metabolism disorders, 426
Case manager: as advocate, 272; for early intervention Chondromalacia, 433
services, 265; for insurance company, 231, 272, 323; Chorea, 427
working with, 322–23 Christian Council on Persons with Disabilities, 471
Casts, 337–39; after Achilles tendon lengthening, 354; af- Chromosomal disorders, 8, 14, 377–78
ter arm and hand surgery, 139; bedpan use for child Chromosome analysis, 12
with, 339; after bunion surgery, 373–74; Wnishing/ Cimetidine (Tagamet), 79
petaling of, 339; in hemiplegia, 132, 134, 135; inhibi- Circular wrap, 370–71
tive, 418, 418; long leg, 141; after lower extremity sur- Citizen advocate, 271
gery, 141; neurovascular assessment of child with, 338; Citizens United for Research in Epilepsy (CURE), 463
for normal arm and hand, 134; positioning of child Claw toes, 164, 454, 454
with, 339; serial, 132, 418; skin care for child with, 337, Clearinghouse for Rehabilitation and Technology Infor-
338; spica, 141 mation, 471
Cataracts, 375 Clonus, 378
Cause-and-eVect relationships, in intellectual develop- Cochlear implants, 68, 378–79, 379
ment, 103, 105–6, 107–8 Cock-up splint, 447
Cavities in teeth, 8, 41, 72, 87–88, 179, 212, 236, 344 Cogentin (benztropine), 83, 395
Cellular migration, disorders of, 393, 393–94, 423 College education, 211, 214, 217, 218, 220
Center for Children with Special Needs, 472 Communication: augmentative, 35, 87, 186, 359, 359–60;
Center for the Study and Advancement of Disability of child with quadriplegia, 178, 179, 186; developing
Policy, 467 skills for, 19–20, 19t, 108, 111; encouraging child’s at-
Center on Disabilities at the California State University, tempts at, 108, 111; nonverbal, 179; parent–physician,
Northridge, 463 14–15, 230; problems with, 8, 18, 35, 41, 86–87; re-
Central nervous system malformations, 423, 429 sources for information about disorders of, 465
index ♦ 481
Communication board, 35, 87, 186 Dantrolene (Dantrium), 154t, 445

Community service organizations, 175, 186, 212 Date Able, 468
Complementary and alternative medicine (CAM), 379 Dating, 115, 116, 207, 211
Computerized axial tomography (CAT scan, CT), 4, 12, Deafness. See Hearing impairment
48, 146, 379–80 Deafness Research Foundation, 465
Computer use, 36–37 Decision making, medical, 14–15, 204–5
Concerta (methylphenidate), 57 Decubitus ulcers, 312–13, 388–89
Concurrent consent for medical care, 278 Deep tendon reXexes, 439
Conditioned play audiometry, 66 Dega osteotomy, 433–34, 434
Conductive education, 451 Dehydration, 213
Conductive hearing loss, 67, 68 Delta Society, 321, 471
Congenital CP, 3, 10 Dental care, 45t, 87, 179, 189, 236, 344; for adults, 212, 213,
Congenital infections, 4, 5, 9, 380, 419 217; video on, 466. See also Teeth
Conjunctivitis, 65 Dental problems, 8, 41, 72, 87–88
Consent for medical care, 278 Dentist, 236, 239
Consent for release of medical information, 230–31, 334 Depo-Provera (medroxyprogesterone acetate), 91
Conservatorship, 335–36 Depression, 8, 203, 218, 226; among caregivers, 216, 297
Consortium for Children and Youth with Disabilities and Development, 17–39; adult, 118–20; from ages four to six,
Special Health Care Needs, The, 472 33–35, 108–11; from ages one to three, 26–33, 103–8;
Constipation, 8, 41, 80–81, 171, 213, 223, 236, 346 from ages six to twelve, 35–38, 112–14; from ages thir-
Continuous positive airway pressure (CPAP), 374–75, 431 teen to eighteen, 38–39, 115–18; cephalocaudal direc-
Continuum of care, 439–41 tion of, 18; of child with diplegia, 145; deWnition of,
Contraception, 91–93, 222, 278 17; diVerences in, 17, 18; in Wrst year, 22–26, 97–103,
Contractures, 7, 171, 212; Achilles tendon, 453–54; 146; of identity, 109; monitoring of, 42; moral, 109;
braces for, 177, 364–71; elbow, 193, 380; Wnger, 381, “normal,” 17; of premature infant, 146, 147; process
381; hamstring, 408, 408–9; hamstring muscles, 197; of, 18; sequence and rate of, 18; skills mastered during,
hand, 125, 126, 177; measuring length of child with, 18–20. See also Growth
73; peroneal, 381, 381–82; pronator, 382, 382; shoulder, Developmental delay, 17–18, 389; deWnition of, 55; in
382–83; thumb, 193, 383, 383–84; wrist, 193, 384, Wrst year, 25–26, 103; “red Xags” for, 20–22, 20t–21t.
384–85 See also Mental retardation
Coordination problems, 3, 5, 153 Developmental Disabilities Councils, 253, 255, 267, 271,
Coping strategies: of adolescents with CP, 163; of parents, 275, 466
100–101, 298–99 Developmental disability, 389
Corpus callosum agenesis, 354, 354–55 Developmental dysphasia, 389
Cost containment, 248 Developmental milestones, 11, 17, 19t, 147, 389
Cotrel-Dubousset instrumentation, 385, 385–86, 443 Developmental pediatrician, 235, 236, 239
Cough reXex, 74, 355 Dextroamphetamine (Dexedrine), 57
Council for Exceptional Children, 466 Diagnosis of CP, 11–12; diplegia, 146; eVect on family,
CPAP (continuous positive airway pressure), 374–75, 431 97–99; hemiplegia, 124, 126; quadriplegia, 168
Crawling, 24; of child with diplegia, 149; of child with Diastematomyelia, 450
hemiplegia, 125, 129; “commando style,” 125, 129, 149 Diazepam, rectal (Diastat), 53–54
Creatine kinase (CK), 428 Diazepam (Valium), 154t, 200
Cremasteric muscle spasticity, 89 Diet: to increase bone mineral density, 82, 190; ketogenic,
Crossed extension reXex, 386, 438, 440t 51, 52, 420; to prevent constipation, 80. See also
“Cross-eye,” 62, 64, 145 Nutrition
Crouched gait, 135, 160, 163–164, 386, 386–87 Dietary supplements, 379
Crutches, 387, 387–88; for child with diplegia, 145, 152, 153, Dilantin (phenytoin), 88
158, 159 Diphtheria vaccine, 43
Crying, 102 Diplegia, 5, 6, 145–65, 390; in adult, 210; at ages four to
Custodial care, 203, 215, 221–22 six, 151–56; at ages one to three, 148–51; at ages seven
Cyanotic extremities, 388 to twelve, 156–61; at ages thirteen to eighteen, 161–65;
Cytomegalovirus (CMV), 4, 9, 380, 388, 419 ankle-foot orthosis for child with, 149, 150, 151, 155,
482 ♦ index
Diplegia (continued) Due process hearing, 396

159, 160; appearance of, 145, 147; back problems in, Dumping syndrome, 80
156, 161; at birth to one year, 146–48; causes of walk- Dysarthria, 396. See also Speech impairment
ing problems in, 152–55; crouched gait in, 160, 163– Dyslexia, 189, 396
164; degrees of severity of, 145–46, 147; foot problems Dysmenorrhea, 91
in, 145, 150, 151; hip problems in, 150, 156, 161; physical Dysmetria, 396
therapy in, 151, 153, 157–58, 161; school environment for Dysphagia, 396. See also Swallowing diYculties
child with, 151, 157; scoliosis and, 156, 161, 165; shoes for Dysphasia, developmental, 389
child with, 150, 159; sitting position in, 149; spasticity Dystonia, 6, 364, 427
in, 6, 145, 154; surgery to improve walking in, 155–56,
161; walking ability in, 145–46, 148, 150, 152, 158, 163; Ear, nose, and throat physician, 235, 242
walking aids for child with, 149, 152, 153, 158, 159 Eardrum, perforation of, 70
Direct consent for medical care, 278 Ear infection, 68–71
“Dirty lungs,” 75 Early intervention, 44t, 397; for child with hearing loss,
Disabilities, 6–7, 415; in adults, 214–17; advocating for 68; deWnition of, 265; eligibility for, 261; Infants and
persons with, 118, 221, 269–94; developmental, 389; Toddlers with Disabilities program, 259–60; infant
education of children with, 257–67; health care for stimulation programs, 147, 169, 170, 397; resources for
persons with, 229–45; legal deWnition of child with, information about, 264
260; prejudice/discrimination against people with, Early Intervention Act (Public Law 99-457), 261
209–10; Social Security Disability Insurance for per- Easter Seal Society, 186, 212, 221, 254, 255, 272, 468
sons with, 286–87. See also Special needs Echoing Hills Village, Inc., 471
Disability awareness, 466 Echolalia, 397
Disability Rights Education and Defense Fund, 464, 468 Educational system, 229, 257–67; access to and privacy
Disabled and Alone, 472 of student records in, 260–61; advocacy in, 118; free
Discharge from hospital, 329–30 appropriate public education in, 257, 258, 265; inclu-
Discipline, for temper tantrums, 31–32 sion in, 157, 189, 211, 415–16; laws related to, 257–63,
Discretionary trust, 290–91, 390 282–83; least restrictive environment in, 259, 261, 282,
Discrimination, legal protection against, 209–10, 220, 422; mainstreaming in, 415–16; resources for informa-
283–85 tion about, 264, 265, 266, 267, 466–67; schools for
Disinheriting child with CP, 288–89 children with special needs in, 263–64; vocational
Dislocated elbow, 390, 390 training in, 261. See also School environment; Special
Dislocated hip, 7, 150, 156, 161, 176, 183, 191–92, 196–97, education
390–92, 391, 392; arthritis and, 225; congenital, 390; Education of All Handicapped Children’s Act (EAHCA;
hypotonic, 392; prevention of, 176, 183, 197; scoliosis Public Law 94-142), 63, 257, 260t, 265, 282, 396
and, 197; surgery for, 156, 176, 183, 192, 196–97 Education of the Handicapped Act (EHA), 257
Dislocated shoulder, 184, 193, 392–93 E game, for vision screening, 63
Divorce, 98, 204 Elbow: contracture of, 193, 380; dislocation of, 390, 390;
Dogs, service, 162, 320–21; resources for information splints for, 172, 184, 446, 446–47; tightness of, 184
about, 471 Electroencephalogram (EEG), 48
Dorsal rhizotomy, 154, 161, 394–95, 445 Electromyography (EMG), 138
Double hemiplegia, 5, 123, 395 Emergency department, 232
Down syndrome, 8, 377, 449 Emergency information form, 332–333
DPT vaccine, 43, 46 Emotional development, 21–22; in adulthood, 118–19; at
Dressing: body mechanics for, 300; of child with cast, ages eight to twelve, 112; at ages four to seven, 109; at
338; four-year-old’s ability for, 33; school-aged child’s ages thirteen to eighteen, 115–16; eVect of CP on, 100,
ability for, 37; toddler’s ability for, 28, 29 109; during Wrst year, 97, 100–101; of toddler, 103–4
Driver’s license, 209–10, 212, 285–86 Emotional problems, 18, 39
Drooling, 8, 41, 72, 82–83, 178, 189, 212, 395–96 Employment, 39, 213–14; accommodations for, 283, 284;
Drop attacks, 50 amotivation and lack of, 217–18; barriers to, 119, 220–
Dual energy X-ray absorptiometry (DEXA, DXA), 81–82, 21; career choices for, 116–18, 325–26; in educational
190, 217, 363, 363–64 community, 220; insurance coverage through, 248;
Duchenne muscular dystrophy, 428 laws against discrimination in, 119, 209–10, 220, 283;
index ♦ 483
mental retardation and, 55; resources for information Fatigue, 208, 224
about, 467; training for, 120, 219 Febrile seizures, 235
Encephalitis, 11, 424 Fecal incontinence, 416
Encephalocele, 429 Feeding: body mechanics for, 302; chairs for, 173, 302,
Endocrinologist, 239 306; four-year-old’s ability for, 33; infant’s ability for,
End-of-life care, 93–94 24; toddler’s ability for, 27
Endometrial ablation, 92 Feeding problems, 24, 71, 102; aspiration, 74–75; in child
Endoscopy, 397–98, 398 with quadriplegia, 169, 190; dumping syndrome, 80;
Enemas, 80, 346–47 esophagitis and, 77; gastroesophageal reXux, 77–
Energy production disorders, 425 80; gastrostomy tube for, 75–77, 341–43; strategies
Enforced use therapy, 134 for, 72–73
Enzyme deWciency disorders, 424–26 Femoral anteversion, 400, 400–401, 452
Epilepsy, 3, 7, 41, 47–54, 444. See also Seizures Femoral osteotomy, 140, 141, 176, 401, 401–2
Epilepsy Foundation of America (EFA), 54, 254, 271, 463 Fetor ex ore, 408
Epiphysiodesis, 141 Fidos for Freedom, 471
Equal Employment Opportunity Commission, 464, 467 Financial burden, 298
Equilibrium reactions, 439 Financial counseling, 467
Equine therapy, 451. See also Horseback riding Financial guardian, 276
Erb’s palsy, 125 Financial planning: disinheriting child with CP, 288–89;
Esophageal strictures, 77–78 for funds from settlement of malpractice claim, 293;
Esophagitis, 77, 398–99, 399 for protection of persons with CP, 286; trusts, 289–
Estate, guardianship of, 276, 289 92; wills, 288
Estate planning, 288 Financing of health care, 232, 247–55, 286–88; for adap-
Exercise, 34; adaptive physical education, 157; for adoles- tive equipment, 175; for adopted children, 280–81; for
cents, 141–42; for adult, 209, 212, 224; for child with augmentative communication devices, 186; by family,
diplegia, 147, 157–58; for child with hemiplegia, 130, 247; getting help with, 253–54; by health maintenance
133–34, 137, 141–42; for child with quadriplegia, 187– organizations, 250; under Medicaid, 250–51, 287;
88; home program for, 158; sports participation, 35– nursing home insurance for, 251; private health insur-
36, 37, 141 ance for, 247–50; private sector organizations for, 254;
Eye examination, 64 by programs for children with special needs, 251–52;
Eyeglasses, 179 resources for information about, 253; SCHIP for, 252–
Eye-hand coordination, 29, 36, 399 53; Social Security Disability Income for, 286–87; so-
Eye patching, for amblyopia, 355, 356 cial service agencies for, 255; for speciWc services, 255;
Eye rubbing, 65 Supplemental Security Income for, 252, 287; for unin-
Eye scratching, 172 sured child, 232; for wheelchair-accessible van, 212, 214
Eye signing, 179, 186 Fine motor skills: of child with diplegia, 156; develop-
ment of, 19, 19t; of infant, 26; of preschool child, 33–
Facilitation, 399 34; of school-aged child, 36, 37; of toddler, 27–29, 127;
Failure to thrive (FTT), 399 warning signs for problems with, 20, 20t
Falls, 153, 159, 217 Fingers: contracture of, 381, 381; numbness of, in carpal
Familial spastic paraplegia (FSP), 8, 399–400 tunnel syndrome, 212–13, 224–25, 375; splints for, 381,
Families of Children under Stress (FOCUS), 469 447, 447; swan-neck (locking), 449
Family: eVect of CP diagnosis on, 97–99; health care Flat feet, 135, 177, 184, 402–3; ankle-foot orthosis for, 150,
costs paid by, 247; Individualized Family Service Plan 160, 184–85; crouched gait due to, 160, 163; in diplegic
for, 265, 334, 417; support for, 99. See also Parents adolescent, 164; surgery for, 140, 160–61, 164, 185,
Family Center on Technology and Disability, 465 402–3
Family Educational Rights and Privacy Act (FERPA, Flexor carpi ulnaris tendon transfer, 139
Public Law 93-380), 260, 261 Flexor sublimis muscle, 381
Family practitioner, 42, 230, 233 Flexor tendon lengthening, for Wnger contracture, 381
Family Village, 463, 474 Floppy infant, 5, 6, 25–26, 29, 100, 147, 403
Family Voices, Inc., 463 Fluid intake, 213, 223
Famotidine (Pepcid), 79 Fluoride treatment of teeth, 87, 344
484 ♦ index
FM system, 403 Gravitational insecurity, 415

Foley catheter, 217 Grice fusion, 402, 403–4
Foot: braces for, 367, 367–68 (see also Ankle-foot orthosis); Gross motor skills: development of, 18–19, 19t; of infant,
calluses on, 164–65, 185; cyanotic, 388; in diplegia, 145, 22–26; of preschool child, 33–35; of toddler, 27–29;
150, 151, 164–65; equinovalgus or planovalgus, 198, warning signs for problems with, 20, 20t
460–61; equinovarus, 198, 448, 461; eversion of, 461; Group homes, 204, 215–16, 222, 279, 282, 299
fusion of, 191, 403–4, 404; in hemiplegia, 123, 129–33, Growth: of adolescent, 38, 158; of child with diplegia, 145;
135; planovalgus (see Flat feet); in quadriplegia, 177, of child with quadriplegia, 170–71, 178; deWnition of,
182–83, 184–85, 191, 198–99; turned in, 130, 135, 140, 17; doctors for management of, 235; eVect of spinal
150, 155 fusion on, 195; evaluation of, 73; failure to thrive, 399;
Foot pressure measurements, 404–6 intrauterine growth retardation, 419; monitoring of,
Formulas: infant, 356; nutritional supplements, 340–41 42, 44t; neurological factors aVecting, 72; poor, 41,
Foster care, 204, 215, 279–80, 281; for adults, 216, 281 71–74; stimulation of, 72–73. See also Development
Fractures, 8, 41, 81–82, 190–91, 217, 431 Growth charts, 73–74, 408
Fragile X syndrome, 378 Growth hormone, 72
Frame plantation of testicular prosthesis, 458 Guardianship, 215, 275–78, 335–36; adoption and, 280–81;
Free appropriate public education, 257, 258, 265 alternatives to, 276; collective corporate, 277; and
Freedom (parapodium) stander, 173, 315 consent for medical care, 278; disinheriting child with
Freud, Sigmund, 9–10 CP, 288–89; of estate, 276, 289; Wnancial, 276; foster
Frost lengthening, 448 care and, 281; mechanisms of, 276, 276t; mental com-
Fundoplication, 76, 79, 80, 169 petency evaluation for, 275–76; after parents’ death,
Fundraising, 254 277; plenary vs. limited, 276; public, 277; roles for,
Fusion: foot, 191, 403–4, 404; hip, 197; shoulder, 193; 277–78; testamentary, 288
spinal, 165, 192, 194–96; wrist, 139 Gum hyperplasia, 88
Gum hypertrophy, 88, 179, 189, 236, 407, 407
Gag reXex, 74 Gynecologist, 213
Gait: analysis of, 133, 160, 165, 404–6, 405; back knee,
360–61, 361; crouched, 135, 160, 163–164, 386, 386–87; Habilitation, 439
in-toeing, 400, 400–401, 452, 452–53; out-toeing, 452, Habit training method of toilet training, 31
452–53 Haemophilus inXuenzae type B vaccine, 9, 43, 424
Gait trainers, 183, 316–17 Hair washing, 337–38
Gastric emptying scan, 78 Halitosis, 408
Gastritis, 406 Hallux valgus, 373
Gastrocnemius muscle, 129 Hammer toes, 164, 454
Gastroenterologist, 235, 236, 239 Hamstring muscles: lengthening of, 408–9, 411–13; tight,
Gastroesophageal reXux disease (GERD), 41, 74, 77–80, 133, 135, 160, 163, 184, 191, 197, 386, 408
169, 236, 407 Hand: in athetosis, 193; braces for, 127, 128, 134, 177,
Gastrostomy (G) tube, 75–77, 169, 342; button tube, 77, 184; in carpal tunnel syndrome, 212–13, 224–25, 375;
341, 342; changing of, 77; complications of, 76–77; of child with hemiplegia, 125, 126, 128, 134, 137–39; of
managing feedings via, 341–43; placement of, 75–76 child with quadriplegia, 178; cyanotic, 388; enforced
Genetic counseling, 12, 223 use therapy for, 134; impaired use of, 107; normal, in
Genetic syndromes, 378, 450 child with hemiplegia, 128; splints for, 177, 184, 375,
German measles. See Rubella 447, 447–48
Gestational age, 407 Hand biting, 172
Gingivitis, 72, 88, 407, 407 Hand hitting, 172
Girl Scouts of the USA/“Serving Girls with Disabilities” Handicapped Children’s Protection Act, 262
Program, 472 Handicaps, 6–7
Glycoprotein metabolism disorders, 426 Hand preference, 27; in hemiplegia, 124–25
Glycopyrrolate (Robinul), 83, 395 Handwriting skills, 36
GO GET BENEFITS, 467 Harrington rod, 409–10, 410, 443
Go-Lytely, 81 H2 blockers, 79
Gracilis muscle lengthening, 411–13 Head banging, 60, 61, 65, 172
index ♦ 485
Head control, poor, 5, 168, 172; oral hygiene for child in, 132–33, 137–38, 142; at birth to one year, 124–26; di-
with, 344; standers for child with, 174, 315 agnosis of, 124, 126; double, 5, 123, 395; early signs of,
Head rolling, 60 124–25; foot and leg involvement in, 123, 129–33, 135–
Head trauma, 4, 11; seizures due to, 47; time to initiate 36, 139–41; hand and arm involvement in, 125, 126,
therapy after, 171–72 128, 134, 137–39; lower extremity surgery in, 132–33,
Health care costs, 247. See also Financing of health care 135–36, 140–43; physical activity for child with, 137;
Health care system, 229–45; case manager in, 231; Wnanc- spasticity in, 134–35
ing of care in, 232, 247–55, 286–88; medical care Hemispheres, cerebral, 376
providers in, 237–45; newborn care in, 234; primary Hemorrhage, intraventricular, 9, 47, 58
care providers in, 232–36; transition of services in, Hepatitis B vaccine, 43
455–56; who to see for speciWc medical needs, 234–37 Herbal remedies, for seizures, 52–53
Health insurance, 247–50; for adaptive equipment, 175; Hereditary spastic paraplegia (HSP), 8, 399–400
Americans with Disabilities Act and, 285; for augmen- Hernia, 41, 88–89, 234; inguinal, 88–89, 413; umbilical, 457
tative communication devices, 186; for braces, 318; Herniorrhaphy, 413
case manager employed by, 231, 272, 323; conditions Herpes simplex virus, 380, 411
not covered by, 249–50; diYculties in obtaining, 210, Hip, knee, ankle, foot orthosis (HKAFO), 368–70, 369
213; letters of medical necessity provided for, 175, 323– Hip abduction brace, 368–70, 369
24; limitations of, 248–49; medical care for child with- Hip adductors, 156, 411; lengthening of, 411–13
out, 232; policies for, 249; State Children’s Health Hip Xexors, tight, 386
Insurance Program, 252–53; for wheelchair, 308 Hip muscle releases, 411, 411–13
Health Insurance Portability and Accountability Act Hippo-therapy, 451. See also Horseback riding
(HIPPA), 230, 260–61, 334 Hip problems: in adolescents, 165, 196–97; anti-
Health maintenance organization (HMO), 250 inXammatory medications for, 191–92, 196; arthritis
Healthy and Ready to Work National Center, The, 472 and, 225; braces for, 368–70, 369; in child with diple-
Healthy People 2010, 279, 456 gia, 150, 156, 161, 165; in child with hemiplegia, 123; in
Hearing, of newborn, 23, 66 child with quadriplegia, 176, 183, 191–92, 196–97; dis-
Hearing aids, 68, 179 location, 7, 150, 156, 161, 176, 183, 191–92, 196–97, 390–
Hearing assessment/screening, 21, 45t, 66, 234–35, 410; in 92, 391, 392 (see also Dislocated hip); hip fusion for,
child with quadriplegia, 178–79, 189; otoacoustic 197; prevention of, 176, 183, 197, 225; scoliosis and,
emission testing, 432 197; subluxation, 150, 156, 161, 165, 176, 183, 196, 391;
Hearing impairment, 5, 7, 11, 18, 41, 65–69, 410; causes of, surgery for, 156, 176, 183, 192, 196–97; valgus hip,
65–66, 68–69; cochlear implants for, 68, 378–79, 379; 460–61; varus hip, 461; windswept hips, 197
conductive, 67, 68; determining type and degree of, Holoprosencephaly, 356
67; FM system for, 403; incidence of, 65; language de- Home: medical, 230, 423–24, 456; modiWcations of, 214,
lay and, 68; otitis media and, 68, 70; ranges of, 67, 301, 302–4
67t; resources for information about, 465–66; risk fac- Homeopathic medicine, 379
tors for, 66; sensorineural, 67, 68, 69, 378–79; treat- Hormonal contraception, 91, 92
ments for, 68 Horseback riding, adaptive, 34, 157, 188, 451
Hear Now, 465 Hospitalization, 327–30; preparing child for, 327–29; for
HEATH Resource Center of the American Council on rehabilitation, 439
Education, 466 Hunter syndrome, 425
Heel cord, 129, 184 Hurler syndrome, 425
Heel cups, 135, 184, 367, 367–68 Hyaline membrane disease (HMD), 413
Height, 71–74. See also Growth Hydrocele, 413
Helicobacter pylori infection, 406 Hydrocephalus, 4, 12, 41, 58–59, 169, 413–14, 414
Helmets: behavioral training, 362, 362–63; protective, 50, Hydrotherapy, 451
61, 159, 172 Hyoscyamine (Levsin), 83, 395
Hemiatrophy, 37 Hyperalimentation, 454
Hemiplegia, 5, 6, 37, 123–43, 410; in adulthood, 209; at Hyperbaric oxygen therapy (HBOT), 414
ages four to six, 133–36; at ages one to three, 126–33; Hyperbilirubinemia, 4, 420
at ages seven to twelve, 136–41; at ages thirteen to eigh- Hyperextension of knees, 360–61, 361
teen, 141–43; appearance of, 123; arm and hand surgery Hypersensitivity, 414–15
486 ♦ index
Hypotonic infant, 5, 6, 25–26, 29, 100, 147, 403 gered by, 50; urinary tract, 217, 459, 459. See also speciWc
Hysterectomy, 92, 93 infections
InXuenza vaccine, 43
IBM Special Needs Information Referral Center, 465 Information services, 468
Ibuprofen (Advil, Motrin), 192, 196, 224, 375 Ingrown toenail, 199, 417, 417
Identity development, 109 Inguinal hernia, 88–89, 413
Iliopsoas muscle: release, lengthening, or transfer of, 411– Inhibition therapy, 417–18
13; tight, 160 Inhibitive casting, 418, 418
Imitative activity, 106 Inspiratory stridor, 421
Immunizations, 9, 42, 43–46, 44t, 233; injury from, 46, Institutional care, 203, 204, 278
294; records and schedule for, 335. See also speciWc Insurance. See Health insurance
vaccines Intellectual development: from age eight to twelve, 113–14;
Impairments, 6–7, 415; adults with, 208–10 from age four to seven, 110–11; from age thirteen to
Incidence of CP, 3 eighteen, 116–17; eVect of CP on, 107–8, 111; during Wrst
Inclusion, in educational settings, 157, 189, 211, 415–16 year, 97, 101–3; imitation and representation in, 107–
Incontinence, 89, 217, 416 8; of toddler, 103, 105–8. See also Mental retardation
Independence: of adolescent, 161–62, 192, 200–205; at Intelligence quotient (IQ), 13; learning disabilities and,
ages eight to twelve, 112; at ages four to seven, 34, 56; mental retardation and, 55; testing of, 29–30
108; of toddler, 28, 104 In-toeing gait, 400, 400–401, 452, 452–53
Independence Dogs, 471 Intrathecal baclofen (ITB), 154, 154t, 161, 200, 418–19,
Independent living: of adult with functional limitations, 419, 445
210–14; of adult with impairments, 207–10; home Intrauterine device (IUD), 91–92
modiWcations for, 214; mental retardation and, 55; re- Intrauterine growth retardation (IUGR), 419
sources for information about, 467–68; training for, Intraventricular hemorrhage, 9, 47, 58
201–2. See also Living arrangements Iron deWciency, 356
Independent Living Research Utilization Program, 467 Irritability, 169–70
Individualized Education Plan (IEP), 188, 189, 258–59,
264–66, 282, 334, 416–17; assessment for, 264, 265–66; Jaundice, 66, 69, 420
meeting for development of, 266; parental disagree- Jejunostomy (J) tube, 79–80, 341
ment with, 265 Job Accommodation Network (JAN), 464, 467
Individualized Family Service Plan (IFSP), 265, 334, 417 Job discrimination, 119, 209–10, 220, 283
Individuals with Disabilities Education Act (IDEA), 257– Job Opportunities for the Blind, 465, 467
60, 265, 266, 282 Job training, 211, 219, 286, 461
Infant (birth to 1 year): attachment between parents and, John Tracy Clinic, 465
97, 99; body mechanics for dressing of, 300; bron-
chopulmonary dysplasia in, 371–72; with CP, 25–26, “Katie Beckett” waiver, 279
102–3; CP developing before 6 months in, 10–11; de- Kernicterus, 420
velopment of, 22–25, 147; diplegia in, 146–48; emo- Keshet: Jewish Parents of Children with Special Needs,
tional development of, 97, 100–101; feeding of, 302; 471
“Xoppy” (hypotonic), 5, 25–26, 29, 100, 147, 403; Ketogenic diet, 51, 52, 420
hemiplegia in, 124–26; intellectual development of, Kids on the Block, 466
97, 101–3; irritable, 169–70; play with toys, 101, 102, Klonopin, 82
103; quadriplegia in, 168–70; retinopathy of prematu- Knee-ankle-foot orthosis (KAFO), 370–71, 371
rity in, 62, 65; sling-seat walker for, 126, 147–48; “spit- Knee(s): bent, walking with, 160, 163 (see also Crouched
ting up,” 77, 169. See also Newborn; Prematurity gait); bracing after epiphysiodesis, 141; hyperexten-
Infantile spasms, 50 sion of, 360–61, 361; immobilizers for, 420; patellar
Infant mortality rate, 10 pain, 433, 433; problems in adolescents, 197–98; in
Infants and Toddlers with Disabilities program, 259–60 quadriplegia, 184, 191, 197–98; that will not bend, 198;
Infant stimulation programs, 147, 169, 170, 397 valgus, 460–61; varus, 461
Infections: congenital, 4, 5, 9, 380, 419; eye, 65; at gas- Knock-knees, 461
trostomy site, 76; immunization against, 43–46; dur- Kyphosis, 420–41, 421; in child with diplegia, 156; in child
ing infancy, 11; otitis media, 68–71, 189; seizures trig- with quadriplegia, 176–77, 183, 192, 195
index ♦ 487
Language skills, 19–20, 19t; from age four to seven, 111; Little, William John, 9
eVect of hearing loss on, 68; warning signs for prob- Little disease. See Cerebral palsy
lems with, 21, 21t. See also Speech development Living arrangements, 203–4, 278–82; for adults with dis-
Large for gestational age (LGA), 407 abilities, 215–16; for adults with functional limitations,
Laryngeal stridor, 421 211–12; for adults with impairments, 209–10; custo-
Laryngomalacia, 421 dial care, 203, 215, 221–22; foster care, 204, 215, 279–
Laryngoscopy, 421–22 80, 281; group homes, 204, 215–16, 222, 279, 282, 299;
Laryngotracheal separation, 83–84, 454–55, 455 home modiWcations, 214, 302–4; institutional care,
Latex allergy, 422 203, 204, 278. See also Independent living
Latissimus dorsi contracture, 382–83 Lofstrand crutches, 387
Lawyer, 270 Long face syndrome, 86
Laxatives, 81 Long leg brace, 370–71
“Lazy eye,” 62, 64, 355, 355–56 Long-range planning, 203, 215–16
Lead poisoning, 4, 56 Long-term care (LTC), 251
Learning disabilities, 3, 7, 18, 36, 37, 41, 114; deWnition of, Lordosis, 195, 422, 423
56; treatment of, 57 Lower esophageal sphincter, 76, 77
Least restrictive environment (LRE), 259, 261, 282, 422 Lower extremities: in diplegia, 145, 147, 164–65; fractures
Legal advocate, 270 in, 190; in hemiplegia, 123, 129, 139–41, 140–43; leg
Legal issues, 229, 269–94; adoption, 280–81; advocacy, braces for, 139–40, 370–71, 371; leg length discrepancy,
269–75, 294; alternative disposition resolution, 270; 7, 135–36, 140–41, 142–43; in quadriplegia, 167, 176–78,
alternatives to institutional care, 278–80; Americans 182–83, 184–85, 191. See also Foot; Knee(s)
with Disabilities Act, 283–85, 283t; child abuse, 376– Low vision, 461. See also Visual impairment
77; disinheriting child with CP, 288–89; Wnancial pro- Luque (unit) rod, 443, 458, 458–59
tection for persons with CP, 286–88; guardianship, Lysosomal storage diseases, 425–26
275–78, 276t; laws applying to adults with CP, 283;
laws related to education, 257–63, 282–83; life plan- Maalox, 79
ning process, 335–336; medical malpractice, 292–94; Macrogyria, 394
obtaining a driver’s license, 209–10, 212, 285–86; MAFO. See Molded ankle-foot orthosis
resources for assistance with, 468; trusts, 289–92; Magic Foundation, 472
wills, 288. See also speciWc laws Magnetic resonance imaging (MRI), 4, 12, 48, 124, 146, 423
Legal Rights of the Catastrophically Ill and Injured: Mainstream, Inc., 467
a Family Guide, 468 Mainstreaming in school, 415–16
Leg braces, 139–40, 370–71, 371 Maintenance/repair of wheelchair, 182, 307–9, 310–12
Legislative advocate, 273–74 Malpractice, medical, 292–94
Leg length discrepancy, 7, 135–36; treatment of, 140–41, Managed care, 248, 250
142–43 Managing the system, 321–22
Lesch-Nyhan syndrome, 60, 426 March of Dimes Birth Defects Foundation, 255, 463
Letters of medical necessity, 175, 323–24 Marriage, 55, 118, 209, 211, 214
Leukodystrophy, 8 Master cooperative trust, 291
Levsin (hyoscyamine), 83, 395 Mastoiditis, 70
Life expectancy, 93–94, 203 Masturbation, 32–33
Life planning process, 335–36 Maternal and Child Health (MCH) Block Grant pro-
Life-threatening situations, medical treatment of child in, grams, 252
204–5 Means-tested government beneWts, 280, 289
Lifting: for bathing, 300–301; for transfer from bed to Measles vaccine, 43
wheelchair, 302. See also Body mechanics Medicaid, 186, 232, 247, 250–51; for adopted children,
Lighthouse National Center for Vision and Child Devel- 280; eligibility for, 250, 280, 287; “Katie Beckett”
opment, 465 waiver, 279; services covered by, 251
Limit setting, 31, 61 Medicaid Home and Community Based Waiver, 251
Lioresal (baclofen), 154t; intrathecal, 154, 154t, 161, 200, Medical care providers, 237–45
418–19, 419, 445 Medical home, 230, 423–24, 456, 468
Lissencephaly, 12, 393, 394 Medical malpractice, 292–94
488 ♦ index
Medical problems, 3, 7–8, 41–94; in adults with CP, 212– Motor tics, 428
13, 217, 222–23; evaluations/health maintenance sched- Motrin (ibuprofen), 196
ule for child with CP, 44t–46t; Wnancing of health Mouth odor, 408
care for, 232, 247–55, 286–88; health care system for, M.O.V.E. curriculum, 451
229–45; primary care for, 42–46 Movement disorders, 427–28
Medical records, 331–35; consent for release of informa- Movement Disorder Society, 463–64
tion from, 230–31, 334; emergency information form, Moving person with CP, body mechanics for, 301–2
332–33; for immunizations, 334–35 Mumps vaccine, 43
Medicare, 287 Muscle relaxants, 225
Med-peds, 233, 240 Muscles: co-contraction of, 427; imbalance of, 153;
Medroxyprogesterone acetate (Depo-Provera), 91 malalignment of, 155; rigidity of, 4, 6, 441; surgical
Meningitis, 4, 5, 9, 11, 56, 66, 69, 424 release/lengthening of, 155, 160, 161, 164, 165, 191, 193,
Meningocele, 429 198. See also speciWc muscles
Menstruation, 90–91, 197 Muscular dystrophy, 8, 428
Mental competence, 275–76 Musculoskeletal pain, 212
Mental retardation, 3, 7, 11, 18, 41, 55–56, 424; in adult, Myelomeningocele, 429
210; categories of severity of, 55; causes of, 55–56; Myofascial release therapy, 451
chromosomal disorders with, 377–78; CP and, 56; Myopathy, 428
deWnition of, 55; premenstrual syndrome and, 90; Myositis ossiWcans, 428–29
quadriplegia and, 172; resources for information Myringotomy, 71
about, 468–69; self-injurious behaviors and, 60;
sexuality, birth control and, 91, 93, 222; toilet training National Academy for Child Development, 470
and, 31 National Adoption Information Clearinghouse, 471
Metabolic disorders, 424–26 National Association for Home Care, 470
Methylphenidate (Concerta, Ritalin), 57 National Association for Visually Handicapped, 465
Metoclopramide (Reglan), 79 National Association of Councils on Developmental Dis-
Microcephaly, 426–27 abilities, 271, 466
Microdeletion syndromes, 377 National Association of Parents of the Visually Impaired,
Micropolygyria, 394 465
Migration index, for hip subluxation, 392 National Association of Protection and Advocacy Systems,
Milk allergy, 356 270, 468
Milwaukee brace, 366 National Association of the Deaf, 465
MMR vaccine, 43 National Center for Complementary and Alternative
Molded ankle-foot orthosis (MAFO), 130, 364–65; for Medicine, 379
child with diplegia, 159, 162, 164; resistance to wear- National Center for Law and Deafness, 468
ing of, 162. See also Ankle-foot orthosis National Center for Research in Vocational Education,
Monoplegia, 123, 410 466
Mood stabilizers, 61 National Center for School Leadership, 466
Moral development, 109 National Center for Youth with Disabilities, 468
Moro reXex, 438, 440t National Center of Medical Home Initiatives for Children
Motivation, 100, 101; parental role in, 101; young adult’s with Special Needs, 468
loss of, 217, 220 National Challenged Homeschoolers Associated Network,
Motor development, 13, 18–19, 19t; of infant, 22–25; of 466
preschool child, 33–35; recommended evaluations National Childhood Vaccine Injury Act, 46
of, 46t; of toddler, 26–28. See also Fine motor skills; National Clearinghouse of Rehabilitation Training Mate-
Gross motor skills rials, 471
Motor dysfunction, 3, 18; appearing after age Wve, 3; facil- National Collaborative on Workforce and Disability, 472
itation for, 399; oral, 72, 74, 169, 178; temporary, 8 National Committee for Citizens in Education Clearing-
“Motor-free” tests, 13 house, 466
Motorized wheelchair, 175, 180–82, 190, 311–12 National Council on Independent Living, 304, 468
“Motor overXow,” 427 National Dissemination Center for Children with Dis-
Motor synergy, 427 abilities (NICHCY), 253, 257, 264, 265, 267, 464, 466
index ♦ 489
National Federation of the Blind, 465 Nutrition: of child who is not growing, 169; evaluation
National Foundation for Consumer Credit, 467 of, 44t, 73, 74; poor, 8, 41, 56, 72; resources for infor-
National Hearing Aid Society, 465 mation about, 469. See also Diet
National Home Education Network, 466 Nutritional history, 74
National Industries for the Severely Handicapped, 467 Nutritional supplements, 72–73, 340–41, 379
National Information Clearinghouse for Infants with Nutritionist, 235, 241
Disabilities and Life-Threatening Conditions, 468 Nystagmus, 21, 62, 63, 430
National Institute of Neurological Disorders and Stroke,
470 Object permanence, 106, 107–8
National Institute on Deafness and Other Communica- Object recognition, 103
tion Disorders Clearinghouse, 465, 466 Obstructive sleep apnea, 85–86, 430, 430–31
National Library Service for the Blind and Physically Obturator neurectomy, 411–13
Handicapped, 465 Occupational therapist, 101, 187, 235, 241, 450–52
National Organization for Rare Disorders, 470 Occupational therapy: for child with diplegia, 151; for
National Organization of Social Security Claimants Rep- child with hemiplegia, 127, 134; for child with quadri-
resentatives, 287, 472 plegia, 170, 171–72, 178, 187; after hand or arm surgery,
National Organization on Disability, 464 139; limitations of, 171
National Parent Network on Disabilities, 469 ODPHP National Health Information Center, 468
National Rehabilitation Association, 464 OYce of Minority Health Resource Center, 468
National Rehabilitation Information Center, 304, 468 OYce of Special Education and Rehabilitative Services, 467
National Society to Prevent Blindness, 465 Omeprazole (Prilosec), 79
Near-drowning, 170 Ophthalmologist, 64, 234, 241
Nebulizer, 84 Optic nerve atrophy, 62, 65
Neck pain, 212, 225 Optometrist, 241
Neonatologist, 13, 234 Oral contraceptives, 91, 92
Nephrologist, 240 Oral hygiene, 343–44. See also Dental care; Teeth
Networking, for employment, 221 Oral motor dysfunction, 72, 74, 169, 178
Neural tube defects (NTDs), 423, 429 Orchidopexy, 458
Neurodevelopmental therapy (NDT), 451 Organic acidemias, 425
NeuroWbromatosis, 429 Orthodontics, 431
Neurogenic bladder, 429–30 Orthopedic problems, 7, 8, 18; in adults, 212–13, 223; in
Neurological problems, 3, 7, 41; of newborn, 13–14; quadriplegia, 175–77
progressive, 8 Orthopedic shoes, 319–20
Neurologist, 235, 240 Orthopedist, 139, 156, 223, 236–37, 241–42
Neurosurgeon, 235, 240 Orthoses. See Braces
Newborn, 17; birth injury of, 9–10; body mechanics for Orthotist, 242
dressing of, 300; decisions about medical treatment Osgood-Schlatter disease, 433
of, 14–15; gestational age of, 407; hearing of, 23, 66; Osteochondritis of patella, 433
jaundice in, 420; with low Apgar score, 10; motor Osteogenesis imperfecta, 8, 180, 431
movements of, 22–23; neurological problems of, 13– Osteopathic doctor, 242
14; physicians for, 234; primitive reXexes of, 18, 22, Osteopenia/osteoporosis, 81–82, 190–91, 217, 431–32
24, 438, 439, 440t–41t; stages of arousal of, 23; vision Osteotomy: acetabular, 176, 196, 197, 433–434, 434; for
of, 23, 63. See also Infant; Prematurity bone malalignment, 155; calcaneal, 191; casting after,
Newborn intensive care nursery, 234 141; femoral, 140, 141, 176, 401, 401–2; for Xat foot de-
Nissen fundoplication, 76, 79, 80 formity, 164; pelvic, 433–34, 434; for spastic hip dis-
No Child Left Behind Act (NCLB), 262–63 ease, 176; tibial, 140, 453; for turned-in foot, 140;
North American Growth and Cerebral Palsy Program, varus, 197
469 Otitis media, 68–71, 189
North American Riding for the Handicapped, Inc., 472 Otoacoustic emission (OAE) testing, 410, 432, 432
Nurse, 240–41; as case manager, 231; in school, 236 Otolaryngologist (ENT), 235, 242
Nurse practitioner, 230, 232, 233, 240–41 Outpatient rehabilitation programs, 439–41
Nursing home insurance, 251 Out-toeing gait, 452, 452–53
490 ♦ index
Overuse syndromes, 212–13, 224, 375 Peroxisomal disorders, 426

Oxygen therapy, hyperbaric, 414 Perseveration, 215, 434–35
Personal digital assistant (PDA), 335
PACER Center, 467 Pertussis vaccine, 43, 46
Pain: of dislocated hip, 191–92, 196; dysmenorrhea, 91; Phenol blocks, 135
musculoskeletal, in adults, 212, 217; neck, 212, 225; Phenylketonuria (PKU), 425
patellar, 433, 433 Phototherapy, for jaundice, 420
Palmar grasp reXex, 438, 440t pH probe, 78, 236
Pamidronate, 82, 431 Physiatrist, 237, 242–43
Pancreatitis, 432; after spinal fusion, 444 Physical education, adaptive, 157
Paraplegia, 5, 390; hereditary (familial) spastic, 8, 399– Physical therapist, 101, 148, 237, 243, 450–52
400. See also Diplegia Physical therapy: for adolescent, 141–42; for arthritis, 225;
Parapodium (freedom) stander, 173, 315 for balance problems, 153; for child with diplegia, 151,
Parent Care, Inc., 469 153, 157–58, 164; for child with hemiplegia, 137, 141–42;
Parents: as advocates, 270–71; alternatives to care by, 204, for child with quadriplegia, 170, 171–72, 178, 187; inhi-
278–80; attachment between baby and, 97, 99; child’s bition therapy, 417–18; limitations of, 171; postsurgi-
guardian after death of, 277; concerns about child’s cal, 188; in school, 188
future, 12–13; consent for release of medical informa- Physicians, 229–31, 238–45; board certiWcation of, 237–38;
tion, 230–31; coping strategies of, 100–101, 298–99; coordination of information from, 231; letters of med-
with CP, 209, 223; decisions regarding medical treat- ical necessity provided by, 175, 323–24; primary care,
ment of child in life-threatening situations, 204–5; 42, 230, 232–36; relationship with, 14–15, 230; for
eVect of CP diagnosis on, 97–99; expectations of, 99, speciWc medical needs, 234–37. See also Specialists
170, 171, 185–86; Internet chat groups for, 474–75; Physician’s assistant (PA), 230, 232, 233, 243
keeping medical history records, 331–35; marital dis- Picture board, 35, 87, 186
cord/divorce of, 98, 204, 297; necessity for long-range Placing reXex, 438, 440t–41t
planning by, 203–4, 215–16; perspective of, 219–20; re- Plantar grasp reXex, 440t
actions to child’s seizures, 51; relinquishing of parental Play: of child with diplegia, 151, 156; of child with hemi-
rights by, 204; resources for, 463–75; strategies for plegia, 127, 133; imaginary, 106–7; imitative, 30; of in-
motivation of infant, 101; stressors on, 297–98; sup- fant with CP, 101; interactive, 30; parallel, 30; of pre-
port groups for, 267, 299; training programs for, 266; school child, 33, 111; of toddler, 28, 104; of toddler
wills of, 288 with CP, 30, 105
Parent to Parent, 469 Play chairs, 173
Parent Training and Information (PTI) Centers, 265, 266 Pneumococcal vaccine, 9, 43, 424
Paronychia, 199, 417, 417 Pneumonia, 435; aspiration, 41, 74–75, 83, 169, 189
Partners in Policymaking Program, 274, 275, 468 Podiatrist, 244
Passive motions, 432 Polio vaccine, 43
Patellar pain, 433, 433 Porencephalic cyst, 435
Pectoralis contracture, 382–83 Positive support reXex, 441t
Pediatrician, 42, 172, 230, 233, 235, 236, 239–40 Positron emission tomography (PET), 48
Pedodontist, 236 Posterior tibialis tendon transfer, 135, 140, 183, 198, 448–
Peer relationships: of adults, 118–19, 207; at ages eight to 49, 449
twelve, 112; at ages four to seven, 108–9; at ages thir- Potty chair, 345–46
teen to eighteen, 115 Prader-Willi syndrome, 377–78
Pelvic band, 368–70 Preadmission process for hospitalization, 327
Pemberton osteotomy, 433–34, 434 Precocious puberty, 38–39
Pentaplegia, 5, 168, 436 Preferred providers, 250
Pepcid (famotidine), 79 Pregnancy: prevention of, 91–93, 222, 278; of women
Percutaneous endoscopic gastrostomy (PEG), 76 with CP, 93, 223
Percutaneous tendon Achilles lengthening, 353 Prejudice, 208
Peripheral neuropathies, 8 Prematurity, 435; attention deWcit–hyperactivity disorder
Periventricular leukomalacia (PVL), 9, 12, 146 and, 56; bronchopulmonary dysplasia and, 371–72;
Peroneus longus contracture, 381, 381–82 developmental eVects of, 146, 147; diplegia and, 145;
index ♦ 491
hyaline membrane disease and, 413; inguinal hernia Purine disorders, 426
and, 88–89; intraventricular hemorrhage and, 9, 47, Pyrimidine disorders, 426
58; osteopenia and, 81; quadriplegia and, 168;
retinopathy of, 62, 65, 441; and risk of CP, 4, 9; unde- Quadcanes, 387
scended testicles and, 89, 457. See also Newborn Quadriplegia, 5, 6, 145, 146, 167–205, 436; adaptive equip-
Premenstrual syndrome (PMS), 90 ment for child with, 175; in adult, 210, 211; at ages four
Preschool child (ages 4–6): body mechanics for dressing to six, 177–85; at ages one to three, 170–77; at ages
of, 300; with CP, 34–35; development of, 33–34, 108– seven to twelve, 185–92; at ages thirteen to eighteen,
11; diplegia in, 151–56; hemiplegia in, 133–36; quadri- 192–205; aspiration and, 189; athetoid, 6, 167; at birth
plegia in, 177–85 to one year, 168–70; bone and joint problems in, 175–
Press as advocate, 271–72 77; communication of child with, 178, 179, 186; diag-
Pressure mapping, 313, 435–36, 436 nosis of, 168; drooling in, 178, 189; foot problems in,
Pressure sores, 312–13, 388–89 177, 182–83, 184–85, 191, 198–99; growth of child with,
Prevacid, 79 170–71, 178; hip problems in, 176, 183, 191–92, 196–97;
Prevention of CP, 8–9 knee problems in, 184, 191, 197–98; mental retardation
Prilosec (omeprazole), 79 and, 172; parents’ expectations of child with, 170, 171,
Primary care, 42–46; for adult, 212, 217; for child without 185–86; physical and occupational therapy in, 170,
health insurance, 232 171–72, 178, 187–88; physicians for child with, 172; risk
Primary care provider (PCP), 42, 230, 232–36 factors for, 168; seating of child with, 172–73, 179–80,
Privacy concerns: of adolescent, 202; consent for release 190; seizures in, 169, 170, 178; self-injurious behaviors
of medical information, 230–31, 334; Family Educa- in, 172; shoes for child with, 185, 198; spastic, 167, 199–
tional Rights and Privacy Act, 260, 261; HIPPA, 230, 200; spinal deformities in, 176–77, 183, 192, 194–96;
260–61, 334 standers for child with, 173–75, 313–16, 314, 315; upper
Professional organizations, 469–70 extremities in, 167, 178, 184, 192, 193; vision and hear-
Profundus muscle, 381 ing of child with, 178–79, 189–90; wheelchair for child
Prognosis, 12–13 with, 175, 179–82, 190, 192
Programs for Children with Special Health Care Needs,
251–52 Radial head dislocation, 390, 390
Prokinetic medications, 78–79 Radiologist, 236
Pronation of arm, 137 Range of motion, in diplegia, 145
Pronator contracture, 382, 382 Ranitidine (Zantac), 79
Pronator teres tendon transfer, 139, 382 Reactive airway disease, 357–58
Prone stander, 149, 173, 314 Reading, 151
Protection & advocacy (P&A) agencies, 270 Recording for the Blind, 465
Protective equipment, 50, 61 Recreation, resources on, 471–72
Proton pump inhibitors (PPIs), 79 Rectal medications or suppositories, 347–49; diazepam,
Proventil (albuterol), 84 53–54
Proximal femoral excision, 196–97 Rectus femoris muscle: tight, 191, 198, 436–37, 437; trans-
Pseudobulbar palsy, 72 fer or release of, 437
Psychiatrist, 244 ReXex(es), 437–39; deep tendon, 439; primitive, 18, 22,
Psychological evaluation, 436 24, 438, 439, 440t–41t
Psychologist, 244 Refractive errors, 62
Puberty, 38, 45t; in boys, 89; delayed, 81; eVect on seizures, Reglan (metoclopramide), 79
90; in girls, 90; precocious, 38–39 Regression of skills, 13
Public guardians, 277 Rehabilitation, 439–41; independent living training dur-
Public Law 93-247, 376 ing, 201–2; resources for information about, 471;
Public Law 93-380, 260, 261 vocational, 211, 219, 286, 461
Public Law 94-142, 63, 257, 260t, 265, 282, 396 Rehabilitation Act of 1973, Section 504, 262, 283
Public Law 99-457, 261 Rehabilitation Engineering and Assistive Technology
Pulmicort (budesonide), 84 Society of North America, 470
Pulmonary specialist, 244 Religious organizations, 471
Purchasing a wheelchair, 182, 307–8 Repair/maintenance of wheelchair, 182, 307–9, 310–12
492 ♦ index
Representational thought, 106–7 Seating, 304–12; for child with quadriplegia, 172–73, 179–
Respiratory distress syndrome (RDS), 413 80, 190; specialists making recommendations for, 237;
Respite care, 204, 471 strollers, 150, 152, 173, 180, 190, 304–6, 305. See also
Restraints, 172 Chairs; Wheelchair
Retinal detachment, 65 Section 504 of the Rehabilitation Act of 1973, 262, 283
Retinopathy of prematurity (ROP), 62, 65, 441 Seizures, 41, 46, 47–54, 444; absence (petit mal), 49; aki-
Retractile testicles, 89, 457 netic (drop attacks), 50; atonic, 50; aura before, 49;
Retrolental Wbroplasia (RLF), 441 caregivers’ reactions to, 51; causes of, 47; child’s expe-
Rett syndrome, 8, 124, 378 rience during, 51; deWnition of, 47; diagnosis of, 48;
Rhizotomy, dorsal, 154, 161, 394–95, 445 eVect of menstruation on, 90; febrile, 235; Wrst aid
Righting reactions, 439 procedures for, 53–54; generalized, 49; incidence of,
Rigidity, 4, 6, 441 47; infantile spasms, 50; ketogenic diet for, 51, 52, 420;
Ritalin (methylphenidate), 57 medications for, 51–52, 356–57; myoclonic, 50; partial,
Robinul (glycopyrrolate), 83, 395 48–49; postictal state after, 49, 50; precautions for
Ronald McDonald houses, 299 child with, 54; quadriplegia and, 169, 170, 178; re-
Round back. See Kyphosis sources for information about, 54; specialist for treat-
Rubella (German measles), 4, 9, 55, 380, 441–42; immu- ment of, 235; in status epilepticus, 52; tonic, 49; tonic-
nization against, 43 clonic (grand mal), 49–50; treatment of, 51–53; triggers
Running, of child with hemiplegia, 134–35 for, 50–51; vagus nerve stimulator for, 51, 52, 460, 460
Self-advocate, 274–75
Safety issues: home modiWcations, 214, 301, 302–4; pro- Self-control, of toddler, 104–5
tective helmets, 50, 61, 159, 172; self-injurious behav- Self-esteem: in adulthood, 119; maximization of, 109; of
iors, 59–61, 172; sling-seat walkers, 126, 147–48, 173 school-aged child, 37–38
Saliva: aspiration of, 83–84; decreasing excessive secre- Self-image, of young adults, 208
tion of, 83 Self-injurious behaviors (SIB), 59–61, 172, 188
Salivagram, 75, 83 Senna, 81
Salter osteotomy, 433–34 Sensorimotor experience (perception), 444
Saltropin (atropine), 395 Sensorineural hearing loss, 67, 68, 69, 378–79
Sartorius muscle, 437 Sensory integration therapy, 451
Scanograms, 136 Separation anxiety, 29, 32
Schizencephaly, 393–94 Septo-optic dysplasia, 356
School-age child (ages 7–12): body mechanics for dressing Service dogs, 162, 320–21; resources for information
of, 300; development of, 35–38, 112–14; diplegia in, about, 471
156–61; hemiplegia in, 136–41; quadriplegia in, 185–92 Sexuality, 42; of adolescents, 115–16, 202; of adults, 118, 120,
School bus, wheelchair on, 308 222; birth control and, 91–93; masturbation, 32–33
School environment: for children with special needs, Sexual maturation, 38–39, 45t
263–64; for child with diplegia, 151, 157; for child with Shaken baby syndrome, 4, 11, 376–77
quadriplegia, 177–78, 189; inclusion (mainstreaming) Sheltered workshops, 39
in, 157, 189, 211, 415–16; least restrictive, 259, 261, 282, Shoe lift, 136, 143
422; therapy in, 188. See also Educational system; Spe- Shoes, 319–20; for child with cocked-up big toe, 199; for
cial education child with diplegia, 150, 159; for child with quadriple-
School nurse, 236 gia, 185, 198; inserts for, 367, 367–68; for use with ankle-
Scoliosis, 7, 194–96, 442–44; braces for, 192, 194, 366, foot orthosis, 150, 320, 364–65
366–67; in child with diplegia, 156, 161, 165; in child Shoulder: contracture of, 382–83; dislocation of, 184, 193,
with quadriplegia, 176–77, 183, 192, 194–96; Cotrel- 392–93; fusion of, 193
Dubousset instrumentation for, 385, 385–86, 443; dis- Shunts for hydrocephalus, 58–59, 169, 414, 414; specialists
located hip and, 197; Harrington rod for, 409–10, 410; for children with, 235
surgery for, 165, 192, 194–96, 443–44; unit (Luque) Sialorrhea (drooling), 8, 41, 72, 82–83, 178, 189, 212, 395–96
rod for, 443, 458, 458–59; wheelchair modiWcations for Siblings for SigniWcant Change, 469
child with, 192, 194, 442 Siblings Information Network, 469
SCOPE, 464 Siblings of child with CP, 98, 298
Scopolamine patch (Transderm Scop), 83, 395 Sign language, 35, 68, 179, 186
index ♦ 493
Single photon emission computed tomography Specialists, 229, 238–45; board certiWcation of, 237–38; for
(SPECT), 48 child with quadriplegia, 172; consent for release of
Sitting: of child with diplegia, 149, 150; of child with medical information to, 230–31, 334; for newborn,
hemiplegia, 125; of child with quadriplegia, 172; in 234; for speciWc medical needs, 234–37
Wrst year, 24, 125, 147; of toddler with CP, 29; in W Special needs, children with: adoption of, 280–81; alter-
position, 149, 400, 400 natives to institutional placement of, 204, 278–80;
Sit-to-stand stander, 315 assessment of, 264; emergency information form for,
Skin care: braces and, 318; casts and, 337, 338; to prevent 332–33; programs for, 251–52; schools for, 263–64.
pressure sores, 312–13, 388–89 See also Disabilities
Sleep: bedtime separation issues of toddlers, 29, 32; of Special needs trust, 336
infant, 23, 32; normal pattern of, 84; obstructive Special Olympics, 34, 472
sleep apnea, 85–86, 430–31; problems with, 41, 84– Speech development, 13, 107; in infant, 23, 24, 25; in in-
86; seizures triggered by lack of, 50; snoring during, fant with CP, 26; in preschool child, 33, 111; in school-
85, 430 age child, 36; in toddler, 27, 28, 29, 107; in toddler
Sling-seat walkers, 126, 147–48, 173 with CP, 29. See also Language skills
Small for gestational age (SGA), 407 Speech impairment, 7, 35, 41, 396; in adult, 210; augmen-
Smith-Lemli-Opitz syndrome (SLOS), 426 tative communication devices for, 35, 87, 186, 359, 359–
Smith-Magenis syndrome, 378 60; after laryngeal separation, 84
Snellen test, for vision screening, 64 Speech synthesizers, 87, 186
Snoring, 85, 430 Speech therapist, 87, 245, 445
Social development, 19t, 20; of infant, 23, 24; of infant Speech therapy, 178, 186, 445
with CP, 26; of preschool child, 33, 108–9; of pre- Spina biWda, 8, 174, 429
school child with CP, 35; of school-aged child, 37, Spinal cord: dysfunction of, 8; tethering of, 450
112–13; of toddler, 28, 104; of toddler with CP, 30, Spinal deformities. See Kyphosis; Lordosis; Scoliosis
105; warning signs for problems with, 21–22, 21t. Spinal fusion, 165, 192, 194–96, 443–44, 445–46
See also Play Spinal instrumentation, 443; Cotrel-Dubousset rod, 385,
Socialization: of adolescent, 115–16; of young adult, 208 385–86, 443; Harrington rod, 409–10, 410, 443; unit
Social Security Administration, 472 (Luque) rod, 443, 458, 458–59
Social Security Disability Insurance (SSDI), 286–87 Spine braces, 366, 366–67
Social service agencies, 232, 255 Spinning, intolerance of, 415
Social smile, 23, 147 Splints: elbow, 172, 184, 446, 446–47; Wnger, 381, 447,
Social worker, 244–45 447; hand and wrist, 177, 184, 375, 447, 447–48; knee
Society for the Advancement of Travel for the Handi- immobilizers, 420; night, 139; resting, 139; thumb,
capped and Elderly, 468 448, 448. See also Braces
Spacesuit therapy, 451–52 Split tibialis posterior tendon, 135, 140, 183, 198, 448–49,
Spanking, 31 449
Spasticity, 4, 5, 6, 444–45; in adult, 212; alcohol and phe- Sports participation, 35–36, 37, 141; resources for informa-
nol blocks for, 135; in child with diplegia, 6, 145, 154; tion about, 471–72
in child with hemiplegia, 134–35; in child with quadri- Stamm gastrostomy, 75–77
plegia, 167, 199–200; dorsal rhizotomy for, 154, 161, Standers, 149, 173–75, 182, 313–16, 314, 315
394–95, 445; medications for, 153–54, 154t, 161, 199– Standing: beneWts of, 173–74; of child with diplegia, 149–
200, 418–19, 419, 445; in mouth muscles, 179; stretch- 50; of child with quadriplegia, 198; in Wrst year, 24,
ing for, 130; walking problems due to, 153 25, 147
Special Ed Advocate, The, 467 State Children’s Health Insurance Program (SCHIP),
Special education, 37, 210–11, 257; for child with hearing 252–53
loss, 68; for child with visual impairment, 62–63; deW- Static encephalopathy. See Cerebral palsy
nition of, 258; eligibility for, 258; Individualized Edu- Status epilepticus, 52
cation Plan for, 188, 189, 258–59, 264, 265–66, 416–17; Stepping reXex, 440t
least restrictive environment for, 259, 261, 282, 422; Stereognosis, 449
related services and, 259, 265; resources for informa- Sterilization, surgical, 92–93, 278
tion about, 264; teachers of, 236. See also Educational Stimulant drugs, 61; for attention deWcit–hyperactivity
system; School environment disorder, 57–58
494 ♦ index
Strabismus, 62, 64, 145 140, 141, 155, 164, 176; pelvic osteotomy, 433–34, 434;
“Stranger anxiety,” 25 for peroneus longus contracture, 382; for pronator
Strattera (atomoxetine), 57 contracture, 139, 382; rectus femoris transfer or re-
Strength training, 224 lease, 437; for seizures, 52; for severely impaired child,
Stress: aVecting caregivers, 297–98; aVecting young 205; for shoulder contracture, 382–83; for shoulder
adults with CP, 208; seizures triggered by, 50 dislocation, 193; for spinal deformities, 165, 192, 194–
Stretching, 212; in diplegia, 147; in hemiplegia, 130; 95; spinal fusion, 165, 192, 194–96, 443–44, 445–46;
passive, 432; in quadriplegia, 184, 191 for strabismus, 64; for swan-neck Wngers, 449; ten-
Stridor, laryngeal, 421 don transfer procedures, 135, 138–39, 140, 142, 183;
Stroke, 3, 4, 12 for thumb contracture, 383–84; tibialis posterior
Strollers, 304–6, 305; for child with diplegia, 150, 152; for tendon transfer, 135, 140, 183, 198, 448–49, 449; tibial
child with quadriplegia, 173, 180, 190 osteotomy, 140, 453; for toe deformities, 454; tra-
Subluxation of hip, 150, 156, 161, 165, 176, 183, 196, 391; cheostomy, 83–84, 454–55, 455; triple arthrodesis, 140,
migration index of, 392 141, 142, 160, 191; for undescended testicles, 458; for
Subluxation of shoulder, 392–93 wrist contracture, 385
Substitute consent for medical care, 278 Swallowing diYculties, 7, 41, 72, 169, 235, 396; aspiration
Subtalar fusion, 191, 402, 403–4, 404 due to, 74–75; doctors for management of, 235
Suctioning techniques, 349–50 Swan-neck splint, 447, 447
Sunshine Foundation, 472 Swayback. See Lordosis
Supine stander, 173, 314–315, 315 Swimming, 34, 77, 140, 157, 187, 212, 224, 451
Supplemental Security Income (SSI), 250, 252, 276, 280, Symmetric tonic neck reXex, 438, 440t
287; resources for information about, 472 Syndrome, 449–50
Supplemental trust, 290 Syphilis, congenital, 380, 450
Support groups for parents, 267, 299 Syringomyelia, 450
Suppositories, rectal, 347–48
Supramalleolar orthosis (SMO), 367 Tactile defensiveness, 414–15
Surfactant therapy, 413 Tagamet (cimetidine), 79
Surgeon, 245 TASH—Disability Advocacy Worldwide, 464
Surgery: for Achilles tendon lengthening, 132–33, 135–36, Tax issues, 214, 280
140–41, 142, 155, 183, 191, 198, 353, 353–54, 454; during Tay-Sachs disease, 8, 124, 425
adolescence, 142–43; for arm and hand problems in Teachers, 114, 236
hemiplegia, 137–38, 142; for aspiration, 83–84; for TECHKNOWLEDGE, 465
back knee gait, 361; for birth control, 92–93, 278; for Teeth, 72; brushing in child with cast, 337; care of, 343–
bunions, 164, 199, 373; for carpal tunnel syndrome, 44; cavities in, 8, 41, 72, 87–88, 179, 212, 236, 344; of
224–25; for cochlear implantation, 68; for crouched child with quadriplegia, 179, 189; Xuoride treatment
gait, 160, 163–64, 386–87; for dislocated hip, 156, 176, of, 87, 344; grinding of, 373; malocclusion of, 88, 431;
183, 192, 196–97, 392; dorsal rhizotomy, 154, 161, 394– plaque on, 407. See also Dental care
95; for drooling, 395–96; for elbow contractures, 193, Temper tantrums, 31–32; management of, 31, 60–61;
380; for femoral anteversion, 400–401; femoral os- “terrible twos,” 27–28, 104
teotomy, 140, 141, 176, 401, 401–2; for Wnger contrac- Tendinitis, wrist, 225
tures, 381; for Xat feet, 140, 160–61, 164, 185, 402–3; Tendon transfer procedures, 135, 138–39, 140, 142
foot fusion, 191, 403–4, 404; for gastroesophageal Terminology associated with CP, 5–7
reXux, 76, 79, 80, 169; for gastrostomy tube place- “Terrible twos,” 27–28, 104
ment, 75–76; for hamstring lengthening, 408–9; Testamentary guardian, 288
herniorrhaphy, 413; hip muscle releases, 411–13; hos- Testamentary trust, 291
pitalization for, 327–30; for hydrocephalus, 59; to im- Testicles: retractile, 89, 457; undescended, 89, 234, 457,
prove walking ability, 153, 155–56, 160; for jejunostomy 457–58
tube placement, 79–80; for leg length discrepancy, Testicular prosthesis, frame plantation of, 458
141, 142–43; for lower extremity problems in hemiple- Testicular torsion, 89, 458
gia, 132–33, 135–36, 140–43; for muscle release/length- Tetanus vaccine, 43
ening, 155, 160, 161, 164, 165, 191, 193, 198; myringot- Tethered spinal cord, 450
omy, 71; for obstructive sleep apnea, 86; osteotomy, Tetraplegia, 168
index ♦ 495
Therapy, 450–52. See also speciWc types of therapy Triceps skinfold measurement, 73
Third ventriculostomy, 59 Triple arthrodesis, 140, 141, 142, 160, 191
Thoracolumbar orthosis (TLSO), 366, 366–67 Triplegia, 5, 145, 168, 456
Three-dimensional gait analysis, 404–6 Trisomy 13 syndrome, 8
Thumb: contracture of, 139, 193, 383, 383–84; splints for, Trisomy 18 syndrome, 8, 14, 124
448, 448 Trust funds, 293
Tibialis posterior muscle spasticity, 131–32, 448 Trusts, 289–92; provisions after death of beneWciary, 291;
Tibialis posterior tendon transfer, 135, 140, 183, 198, 448– setting up, 291; trustees for, 291; types of, 290–91
49, 449 TSRH instrumentation, 443
Tibial osteotomy, 140, 453 Tube feedings, 341–43; administration of, 342–43; bolus
Tibial torsion, 452, 452–53 vs. continuous, 341–42; information card for, 343
Tics, 58, 428 Twister cable, 370–71
Tizanidine, 445 Tylenol (acetaminophen), 196
Toddler (ages 1–3): body mechanics for dressing of, 300; Tympanometry, 67
with CP, 29–33; development of, 26–29; diplegia in, Tympanostomy tubes, 71
148–51; hemiplegia in, 126–33; independence and self-
control of, 104–5; intellectual development of, 103, UCB orthotic, 367–68
105–8; IQ testing of, 29–30; quadriplegia in, 170–77; Ulcers, gastric, 406
speech development in, 107; temper tantrums of, 27– Ultrasonography, 456–57
28, 31–32, 104; toilet training of, 28, 30 Umbilical hernia, 457
Toe deformities, 164, 185, 199, 373, 454, 454 Undescended testicles, 89, 234, 457, 457–58
Toenail, ingrown, 199, 417, 417 United Cerebral Palsy Associations (UCPA), 212, 221, 253,
Toe spacers, 185 254, 255, 257, 267, 270, 271, 272, 304, 464
Toe walking, 125, 130, 150, 151, 453, 453–54 United States Cerebral Palsy Athletic Association, 472
Toilet training, 28, 30, 344–46; adaptive toileting, 346; of Unit (Luque) rod, 443, 458, 458–59
child with CP, 30–31; developmental readiness for, Upper extremities: braces for, 137, 177; contractures of,
344–45, 416; habit training method of, 31; specialists 192; in diplegia, 145; in hemiplegia, 123, 125, 127, 137–
for help with, 236 39; in quadriplegia, 167, 178, 184, 192, 193. See also
Tongue thrust, 72, 74, 88 Elbow; Fingers; Hand; Wrist
Tonic labyrinthine reXex, 438, 440t Urea cycle defects, 425
Tonic neck reXex: asymmetric, 358, 438, 440t; symmetric, Urecholine (bethanechol), 79
438, 440t Urinary incontinence, 41, 89, 217, 416
Tonsils: in obstructive sleep apnea, 85, 86; removal of, 86 Urinary tract infections, 217, 459, 459
Total hip replacement, 196 Urodynamic testing, 459–60
Total parenteral nutrition (TPN), 454 Urologist, 245
Toxoplasmosis, 9, 380, 419 U.S. Architectural and Transportation Barriers Compli-
Toys: for child with hemiplegia, 127; for child with quad- ance Board—Access Board, 464
riplegia, 179; helping child to play with, 108; infant’s U.S. Department of Housing and Urban Development,
play with, 101, 102, 103; resources for information 464
about, 474; as walking aids, 149 U.S. Department of Justice, 464
Tracheal diversion, 455, 455 Uvulopalatopharyngeoplasty, 86
Tracheomalacia, 421
Tracheostomy, 83–84, 454–55, 455 Vagus nerve stimulator (VNS), 51, 52, 460, 460
Transderm Scop (scopolamine patch), 83, 395 Valgus, 460–61
Transition of medical services, 455–56 Valium (diazepam), 154t, 200
Transition to adulthood, 207–8, 218–20; resources for Varicella (chickenpox), 380, 461; immunization against, 43
information about, 472 Varus, 461
Transportation: accessibility of, 284–85; car seats for, 173, Ventolin (albuterol), 84
309–10; independent living and, 211–12; wheelchair- Ventriculoatrial shunt, 59
accessible van for, 212, 214 Ventriculojugular shunt, 59
Travel, resources on, 471–72 Ventriculo-peritoneal (V-P) shunt, 58–59
Tremor, 6 Ventriculopleural shunt, 59
496 ♦ index
Very Special Arts, 472 Walking sticks, 387

Vision, of newborn, 23, 63 Weakness, 224
Vision assessment/screening, 45t, 63–64, 234; in child Weight, 71–74; failure to thrive, 399. See also Growth
with quadriplegia, 178–79, 189–90; in newborn, 63; in Wheelchair, 110, 305–9; for adult, 211, 212; as car seat,
young child, 63–64 309–10; for child with diplegia, 146, 150, 152, 158, 159;
Visual development, 23, 24 for child with quadriplegia, 179–82, 190, 192; for child
Visual-evoked potentials (VEPs), 63 with scoliosis, 192, 194, 442; evaluating Wt of,
Visual-evoked response (VER), 63 308–9; exercise for child who uses, 187–88; home
Visual impairment, 7, 18, 26, 41, 62–65, 461; resources for modiWcations for use of, 301, 303; inserts for, 312;
information about, 465 maintenance/repair of, 182, 307–9, 310–12; manual,
Visual re-enforced audiometry, 66 311; motorized, 175, 180–82, 190, 311–12; osteopenia
Vitamin D, 81, 82, 217, 432 and, 81; pressure sores and, 312–13; purchase of, 182,
Vocal tics, 428 307–8; on school bus, 308; selection of, 182; transfer
Vocational rehabilitation, 211, 219, 286, 461 from bed to, 302; transportation of, 308
Vocational training in school, 261 Wheelchair-accessible van, 212, 214
Voiding cystourethrogram (VCUG), 459 Wheezing, 357–58
Vomiting, 235–36 Wills, 288; trusts and, 289–92
Wilmington brace, 366
Walkers, 316–17; for child with diplegia, 146, 149, 152, 153; Windswept hips, 197
for child with quadriplegia, 183; sling-seat, 126, 147– Wrist: contracture of, 193, 384, 384–85; fusion of, 139;
48, 173 splints for, 177, 184, 375, 447, 447–48; tendinitis of, 225
Walking, 13; of adult with CP, 212, 226; ataxia and, 358;
causes of problems with, 152–55; of child with diple- X-linked adrenoleukodystrophy, 426
gia, 145–46, 148, 150, 152, 158, 163; of child with hemi- X-rays, 12
plegia, 125, 129–30; of child with quadriplegia, 182; in
crouched pattern, 160; delayed, 152; in Wrst year, 25; “Yellow skin,” 420
surgery for improvement of, 155–56, 161; of toddler, “Your Smile” video, 466
27, 148; of toddler with CP, 29, 148; toe walking, 125,
130, 150, 151, 453, 453–54 Zantac (ranitidine), 79
Walking aids: for child with diplegia, 149, 152, 153, 158, 159; Zebley Implementation Project, 472
for child with quadriplegia, 182–83; periodic reevalua- Z-plasty lengthening of Achilles tendon, 354
tion of, 217. See also Canes; Crutches; Walkers Z-score, 431

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Cerebral Palsy

A Johns Hopkins Press Health Book

A Complete Guide for Caregiving

Freeman Miller, M.D.

with Marilyn L. Boos, R.N.C., M.S.

Kirk Dabney, M.D.

Linda DuVy, B.S., P.A.-C.

Robin C. Meyers, M.P.H., R.D.

Douglas T. Pearson, Ph.D.

Kathleen Trzcinski, R.N., M.S.N., C.R.N.P.

Rhonda S. Walter, M.D.

Joan Lenett Whinston

© 1995, 2006 The Johns Hopkins University Press

The Johns Hopkins University Press

Library of Congress Cataloging-in-Publication Data

Foreword, by Joan Lenett Whinston vii

1. What Is Cerebral Palsy? 3

Taking Care of Yourself When You Care for Others 297

Choosing a Stander 313

From Achilles Tendon Lengthening to

Resources: Support Groups, Foundations,

♦ P R O B A B LY E V E R Y P A R E N T of every child who has a

♦ T H E I N F O R M A T I O N in these pages represents the current

chapter—Chapter 8—looks at issues confronted by the adult with CP. Chap-

A Wnal thought before we begin: Each child is an individual, and no book

♦ A S W E N O T E D in the Wrst edition, a work of this scope depends

Michael Alexander, M.D. Rochelle Glidden, Psy.D.

Special thanks go to Josh Whinston, Bart Stevens, Ch.L.A.P., Diane Gal-

Steven J. Bachrach, M.D., is Chief of the Division of General Pediatrics

Rhonda S. Walter, M.D., is the Chief of the Division of Developmen-

1 ♦ C E R E B R A L P A L S Y is a collection of motor disorders result-

Idiopathic (no known cause of damage to brain during pregnancy)—still

There is no way to predict which children’s brains will be damaged by one

Other terms used to deWne speciWc problems of movement or muscle

Impaired means a deviation from normal;

Neurological problems Orthopedic problems

nosis of cerebral palsy cannot be made solely on the basis of an x-ray or a

♦ W H E N W E T A L K about the changes that an individual goes

Table 1 Overview of Developmental Milestones

3 months Supports chest Grasps placed Coos/laughs Smiles easily,

6 months Rolls and sits Reaches and Babbles; plays Fear of

18 months Walks up steps Stacks 3 blocks; Points to named Helps with

24 months Alternates feet Stacks 6 cubes; At least 50-word Washes/dries

30 months Jumps with Holds pencil in Uses pronouns Plays tag;

36 months Balances on 1 Imitates block Recognizes 3 Plays with

Table 2 Developmental Red Flags

Continued on next page

includes expressive language—the ability to transmit information. Social

Delays that are a cause of concern in language development include

months of life appears to stiVen when held, or is extraordinarily “unhug-

Birth to One Year

Ages One to Three

world around her, composed of parents, siblings, and perhaps an emerging

Three-year-olds may be much more fearful than 2-year-olds, however,

Ages Four to Six

Ages Six to Twelve

sports, becomes important, and participation in organized activities is often

movements, for whom an adapted keyboard may make a signiWcant diVer-

Ages Thirteen to Eighteen

gonadal glands. The more unusual causes of precocious puberty include