Inspiration for Autism: A Pathway to Hope and Resources

Copyright © 2016 Debra Dilley Rosen.

Cover photo by Meagan Bourne.

meaganlindseyphoto.com

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

Scriptures taken from the Holy Bible, New International Version®, NIV®. Copyright © 1973, 1978, 1984, 2011 by Biblica, Inc.™ Used by permission of Zondervan. All rights reserved worldwide. www.zondervan.com The NIV and New International Version are trademarks registered in the United States Patent and Trademark Office by Biblica, Inc.™ All rights reserved.

WestBow Press

A Division of Thomas Nelson & Zondervan

1663 Liberty Drive

Bloomington, IN 47403

www.westbowpress.com

1 (866) 928-1240

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

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ISBN: 978-1-5127-4951-9 (sc)

ISBN: 978-1-5127-4952-6 (hc)

ISBN: 978-1-5127-4950-2 (e)

Library of Congress Control Number: 2016911302

WestBow Press rev. date: 07/28/2016

Contents

Acknowledgments

Introduction

Part 1: Our Story

Chapter 1: Out of the Silence

Chapter 2: One Eye Opened … One Eye Closed

Chapter 3: A Hard Look in the Mirror

Chapter 4: Denial Is Dangerous

Chapter 5: Sensory Overload

Chapter 6: And Then There Was Food

Chapter 7: Walk Your Talk

Chapter 8: The Seventh Day

Chapter 9: Ocean Eyes

Chapter 10: United We Stand … Divided We Fall

Chapter 11: A Second Chance

Chapter 12: Student in Training

Part 2: Resources

Chapter 1: General Education v. Special Education

Chapter 2: Individual Education Plans (IEPs)

Chapter 3: What Happens When I Don’t Fit In?

Chapter 4: Where To Turn For More Information

Scripture Cited

Reviews for Inspiration for Autism

I sat down to read Inspiration for Autism on a beautiful Friday afternoon, not expecting to complete the entire book in one sitting. It captivated my heart and took me on quite a journey. My spirit soared, I laughed with Mrs. Rosen at times and cried in others. Not only did she unleash her emotions for other parents to see, but her spiritual journey was challenged as well. Never has a book about a child with Autism covered so many areas. The story is beautiful, but I was specifically drawn to her expert knowledge incorporating a hands on model to access medical, behavioral, and educational services needed for a child with Autism. I would love to include this book as a required reading for my graduate students earning a Special Education Credential … it’s that good!

—Shari Harris, PhD,

autism specialist, educator

Debbie offers hope for parents managing Autism in their family by sharing her own personal journey with her Autistic child and providing practical information. Her transparency of revealing deep personal pains and family challenges are overcome by yet a deeper faith in Jesus Christ that brings understanding, healing and optimism for life.

—Andrew Bosco, associate pastor,

First Baptist Church in Orlando, Florida

Her book is lovely, heartfelt, sweet, honest and extremely helpful. And Anthony … he is so blessed to have her for his mom. Unbelievable!

—Sandra Keays, MFT

I believe this book could help so many people who have or know someone with Autism. I have worked with Special Needs Children for over seventeen years and was educated in many ways to help understand the needs of Autistic kids. I would strongly suggest this book for the insight of a mothers journey, new ways of coping with the situations one will encounter, and help others to know these kids are just like any other child who wants to feel accepted and loved the way God made them.

—Debbie Osterman, special education

Instructional Aide

Mrs. Rosen takes the reader on a personal and honest journey of one mother as she navigates the diagnosis of Autism, its treatment, the educational system, and the complexities of family life. Her story is one of faith, family, hope, advocacy, and persistence.

—Heidi Glesne, M.S., BCBA

(board certified behavior analyst)

I was completely drawn into Debbie’s remarkably honest memoir. She explains how she has coped and what she has learned of her son’s Autism diagnosis. She offers great advice on resources and how to stay sane through it all. Thank you, Debbie, for giving me hope. I wish this book was given to me when Autism first became a part of our lives.

—Pilar A. Gallagher, mother of two daughters

(one with autism)

To my cherished daughter,

Allison.

I love you with all of my heart.

Acknowledgments

I extend my most sincere and heartfelt thanks to my daughter, Allison. Without your smile, conversations, grace, and love, I would be adrift. You bring the entirety to our family. You are truly the sweetest gift from heaven, and I love you with all of my heart.

I thank my son, Anthony, for his courage and willingness to overcome his innermost struggles. You have been nothing short of an inspiration to me. You bring such joy to my life, and I love you with all of my heart.

I thank Rob, my husband, who asked to share in my expedition on earth. Your encouragement, love of life, and fortitude help me more than you will ever know. Your willingness to keep fighting the good fight is honorable and treasured. My heart is yours.

Without exception, I thank every behavioral therapist who helped us on our own individual journeys. You know who you are, and this book would not have been possible without each and every one of you. Nor would I. Your patience, wisdom, and heart carried me through many difficult days. You transform lives, not just autistic ones.

I want to especially thank each and every one of my dear friends who took the time to add their own flavor and wisdom to this particular project. Linda Durbin, Heidi Glesne, Shari Harris, Debbie Osterman, Pilar Gallagher, Andrew Bosco, and Sandra Keays, you have helped me to see different perspectives that were hidden from my viewpoint. I am humbled by your willingness to show me how community works together for His kingdom.

I thank my editor, Holly Lorincz, for such foresight and intellect on my beloved manuscript. You have helped me to share my heart and my experiences with the very people in need of hope and inspiration. You change lives.

I thank my mom, dad, sister, and other family members for helping me have confidence in myself and in my dreams. Without my solid foundation, I would not have been able to build my indefinite future. Your investment in my life will be forever cherished.

I want to thank my dear girlfriends. Without all of you, I wouldn’t be all of me. I am blessed to be able to live life with each and every one of you. Thank you.

I thank my heavenly Father. You are my everything. Always.

Introduction

My daughter is a typical developing teenager with those typical teenage behaviors. (If you have one, you understand those italics.) My son, on the other hand, is not your typical teenager. He is a boy with special needs. He was diagnosed at around age three with autism. Put yourself in my place. Do you know how to raise an autistic child? Neither did I.

I have been blessed because my heavenly Father has given me two children, and I love them for exactly who they are. The struggles we have faced are not unique to our little family, yet autism still seems like a hidden disease with a stigma for the child, the parents, and the brothers and sisters. I believe it is important today with the climbing rates of autism in our society that we understand the shoes each family member walks in. From the heart and the head of a single mom who left behind a career to raise an autistic child, you will see the private tears, the fears, and the work needed to change different maladaptive behaviors, how to help siblings understand their challenging roles, and how to help the school provide an education for your special child.

My career has always focused around education. I began teaching high school at the early age of twenty-three. I simultaneously worked during the summers at a local university, teaching at the New Teachers Institute for hopeful young educators. I loved teaching high school; however, with the completion of my master’s degree and school administration credential, I soon was hired as an assistant principal at a junior high school not far from my home. I learned invaluable skills working with staff, students, and parents during my career in administration. I also enjoyed the leadership role as part of the vision of our staff and teachers. It was an exciting career, and every day brought new challenges and new lessons.

As I was climbing that career ladder on the way to becoming the next principal of my own school, I was given the blessing of motherhood. Raising two children and putting my ladder climbing on hold was one of the best decisions of my life. Then it became apparent that I wouldn’t be climbing my own career ladder anymore, as I’d be traveling down a new road instead and picking up a new ladder. My son’s developmental disability was diagnosed, and autism entered into our family.

With that diagnosis came a wealth of information I hadn’t imagined existed. I became a parental expert on the subject by experiencing it firsthand and then by applying the techniques I’d been taught in addressing it. The onset of this journey was frightening because I knew so little. Thankfully, God has guided me through each step. Now I pray for each parent to have strength and faith, facing the same fear that paralyzed my first steps. This book is a result of that prayer, and it also reveals my desire to hold out a helping hand to you as you begin your journey.

In the hopes of sharing my challenges, difficulties, gifts, and rewards, I focus on my story as a mom walking through the diagnosis of her only son. My yearning is that I can leave you with a hope, an inspiration, and even some encouragement. There have been so many gifts and blessings we have received because of and not in spite of this diagnosis!

The second part of my book is a resource section with educational questions and concerns that may arise with special needs children. It is written from my perspective as a mother, teacher, assistant principal, and parental advocate for my son. It speaks of inclusion in the general education population, IEPs, and not fitting in with the other kids in the class and on the playgrounds.

My prayer is that you find the hope and not the despair in everyday living with your family. I hope that you find the joy and not the fear as you travel down unchartered roads. I hope that you enjoy your life as it has been given to you and not long for another. I do not believe in coincidences. I believe you’re reading this book right now, and it is part of God’s perfect plan. Enjoy your journey as I have learned to enjoy mine!

Blessings,

Deb

Part 1

OUR STORY

Chapter 1

OUT OF THE SILENCE

It was a cold, rainy February day when we walked into our pediatrician’s office. I was concerned that my two-year-old boy didn’t speak or even grumble, mumble, or make any sound that slightly resembled a word.

My pediatrician examined Anthony quickly like he had always done before and said, He’s fine. He’s two. His older sister speaks for him. He doesn’t need to speak for himself. Don’t worry, Mom, Anthony is a typical, active, little guy!

He tried to get Anthony to mimic and imitate him and was mildly successful, so he concluded, No problems, no concerns. Yet I was insistent we see a speech therapist. My boy was close to three years old and didn’t have any intelligible speech. He didn’t come when I would call, and I was concerned he might be deaf as well as possibly speech-delayed. I expressed my concerns and was adamant on the issue. The doctor wrote the referral for a speech pathologist who