Shakeel 1

Saad Bin Shakeel

22110324

Miss Furrha Ahsan

Writing and Communication SS 100 Section 7

10 May 2019

Does lack of communication between Down syndrome children and society

cause impediments?

Each cell of the human body holds a nucleus within which genes are stored. Genes is

responsible for carrying the codes for all our hereditary characteristics and are clustered along

rod-like structures called chromosomes. Naturally, each cell nucleus contains 23 pairs of

chromosomes, half of which are inherited from each parent. The occurrence of Down

syndrome happens when a person has an extra copy of chromosome 21 in its entirety or

partial form. This additional genetic material changes the developmental progression and

causes Down syndrome characteristics. Down syndrome children have few physical traits in

common – deficiency in muscle tone, short height, an upward inclination to the eyes, and a

deep straight crease through the center of the palm (Shah). Nevertheless, every person with

Down syndrome is unique in their own way and the degree to which they may possess these

physical features may differ. Moreover, Down syndrome children also suffer from an

intellectual impairment, delay of speech, and compulsive behavioural disorders. The

occurrence of Down syndrome is fairly common worldwide. According to the Journal of

Pakistan Medical Association, the frequency of birth of Down syndrome baby is 1/700 of all

live births (Nadira). In Pakistan, 6,000 babies with Down syndrome are born annually,
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making Down syndrome the most prevalent chromosomal condition. The occurrence of

Down syndrome is a global phenomenon affecting people of different ethnicities and

economic status. A woman aged 35 has a 1/350 probability of conceiving a child with Down

syndrome, which increases to 1/40 by the time a woman ages to 45.

As soon as the baby comes out of the womb of the mother, the doctor's obnoxious

statement leaves the parents in a state of turmoil. "I'm sorry to have to tell you this, but your

baby has Down syndrome." The blissful moment of a childbirth takes a "U-turn" and shatters

the confidence and sentiments of the close family members for a certain period of time.

Unfortunately, in our contemporary society lies a deeply engraved feature of human

behaviour- one that is considered acceptable and overlooked as part of everyday lives. This

attribute is stereotyping and its effects are widespread, ranging from personal life to the social

life of children with Down syndrome. These children are pitied with the belief that these

children are inflicted by personal tragedy. Also, these children are assumed to be deprived of

a fulfilling “quality of life”. The impairments inherent in these children are more emphasized

by the people as compared to the abilities possessed by these children. It is believed that

Down syndrome children bring misfortune because they are cursed or have a spell placed on

them by witchcraft. Often, they are not considered fully human or possessed by evil spirits.

These children are considered as a sign of bad omen, which further translates into violence,

hatred, and suspicion against these children. Many of these stereotypes have been perpetrated

by segregation, wrong perceptions, isolation, and incomplete information. The birth of Down

syndrome children brings with it immense psychosocial challenges because of the stigma

associated to it. This leads the children to live secluded lives and delineates them further from

the mainstream. According to the Pakistan Down syndrome Association, "People have hidden

their children into homes” (Lashari). Juliana Claassens, an Assistant Professor at Cornell,

says that stereotypes and “misguided perceptions” in society are “one of the most daunting
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challenges” that disabled children face in their lives. (169). Lack of communication between

Down syndrome children and society due to societal misperceptions causes psychological

and social impacts on the family and schooling of these children.

A message from families repeatedly echoed is that the positive effects of a Down

syndrome child are much greater than any challenges faced. The majority of families agree

that they are stronger and closer because of the experience of coping with a disability, and

that they are more focused on the things that really matter in life. Many research studies have

investigated how a child with Down's syndrome affects families. Overtime positive

sentiments emerge in parents. Parents may think of caring for a child with a chronic disability

as a way of giving meaning and purpose to their lives: a source of self-actualization and

fulfillment (Schwartz, 2003). It is observed that in the early months of the birth of a child

with Down syndrome, parents usually do not accept the child, and even if they do accept the

child, they do not accept that their child has Down syndrome. One mother explained her

process of acceptance: “I think the first time I accepted my daughter was the time she was in

the hospital. When I got there, I saw her looking at me. I felt that she could recognize me. It

was so different from how she looked at the nurses. It seemed that she was saying, Mummy,

I’ve suffered a lot! It was at that moment that I began to accept her.” A few of the mothers

expressed their emotional state as “piece of darkness”, where they are surrounded by denial

and confusion (Lam). Interestingly, this short period of anguish is immediately followed by a

major strengthening of bonds between Down syndrome children and the parents and siblings.

In a survey conducted by Povee, some of the respondents replied that these children enrich

family life by forging strong family relationships, teaching valuable lessons, and shaping life

philosophies by bringing patience, accepting differences, and enhancing appreciation of

smaller things in life (Leonard). Many family members believe that these children made

them realize that how one should be contended and thankful for their lives since there are
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always people who are worse off. These children have a profound impact on the siblings.

Since an early age, siblings may develop a greater capacity for care and compassion for their

Down syndrome sibling and with other people too. According to the Telethon School of

Child Health, siblings of these children are more emotionally mature than the kids of their

age since they get to deal with many issues since an early age (Stoneman). Siblings are

observed to develop qualities of a teacher, and become adept at problem-solving skills

(Baker). Moreover, siblings are observed exercising more patience, and learn to appreciate

their own self, being acutely aware of the difficulties faced by their sibling. Moreover, the

birth of a down child exhibits positive effects on the marital relationship of the parents. Two

women reported that after the child's birth, their marital relationships improved because they

shared a common goal with their husbands: to work towards their child's best interests

(Abbot). Most mothers, however, felt that during their transition period their marital

relationship had adverse effects because their spouses showed apathy to the child and

declined to share the responsibility for caring. However, when fathers began accepting their

children, they also began to take part in their care. The marital relationship bolstered up as the

burdens of the mothers decreased. A study conducted by Van Riper et al. (2010) showed a

significant increase in marital functioning of families of children with Down syndrome in

sharp contrast to the families of children without Down syndrome. Therefore, it can be

observed that Down syndrome children induce positive effects on the marital relationship of

the parents and the overall well-being of the family.

However, the birth of a Down syndrome baby also brings difficulties with it in the

shape of emotional, physical, and financial demands. Families reported higher levels of stress

and less satisfaction with lives due to behavioural problems of the child (Cunningham).

Fathers consistently reported lower satisfaction with life even if it is a boy. Male pride and

ego shatter when he is caught up in the belief that his child would not be able to function
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properly like other healthy children and disgrace him in front of society. Fathers wouldn't

accept and hug their kids or kiss them. The ecological systems theory of Bronfenbrenner

defined humans as both 'culture producing specie ' and ' culture produced’ (William).

Therefore, community narratives, emerging in reply to disability circumstances, may also

affect the social behaviours and practices of the parents. In addition, an increase in financial

burdens is one of the most common problems facing all families with disabled children.

Families usually have to spend more on child care in the form of medical treatments and child

caretaker for assistance. This induces financial stress on the parents. When fathers do not

foresee a favourable future for his kid, they feel discouraged to spend a huge sum of money

on their child. The conflict of thoughts between husband and wife fuels frequent tussles. This

has an adverse effect on the marital functioning of the parents. By refusing to share the

responsibility for caring and training, fathers demonstrated their indifference. Fathers are

unable to accept their sons, primarily because they couldn't assist to pass on the name of their

family, and led the family to "lose face." One mother gave an illustration of this: “While we

are traveling by the Mass Transit Railway, it usually happens that I carry my disabled child

and sit in one compartment, whereas my husband brings our normal child and sits in the other

compartment.” Furthermore, families also faced problems with social integration. It is

commonly reported by families that people staring in public places make them feel

embarrassed and uneasy. This is totally consistent with Cheng and Tang’s findings which

states that parents do not bring their Down syndrome children to public gatherings to refrain

from people’s antagonistic gazes and rejection. Media accounts also show the bias and

ignorance of people regarding Down syndrome and mental disability. Parents often hide the

disability of their child in front of their friends and neighbours with the fear of losing their

friendships. One mother stated, “She [my friend] didn’t know whether the syndrome was

infectious or not…While her son was together with my son, people stared at both of them ...
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In addition, she was afraid that her son would imitate my son’s behaviour. Therefore, she

didn’t come in contact with me anymore.” Mothers, however, are forced to suffer the most

due to the disability of their child. For instance, mothers have to face social restrictions. This

relates to constraints placed on the mothers after the birth of the Down syndrome kid. Besides

daily care, mothers have to bring their kids to follow-up appointments and evaluations,

continue training at home, and go along with their kids to training programs. Moms are

drained and hesitant to take part in other social activities. Mothers' concern about managing

the difficult behaviour of their children outside the home also limits their social activities.

Several mothers who had worked full-time had to give up their jobs for the upbringing of

Down syndrome children. Consequently, they became financially reliant on their husbands

which further strengthen society's patriarchal customs. As a result, mothers get to reduce their

social activities. Moreover, siblings also encounter challenges with the advent of a child with

Down syndrome. Some elder siblings did not tell their classmates and friends about having a

disabled sibling, whereas younger ones were seen to be jealous because of the extra attention

and care being given to Down syndrome children. With a sibling having Down syndrome,

siblings get to face extra rules and restrictions such as keeping doors closed, not leaving their

sibling unattended, and keeping a vigilant eye on them at all times. Due to additional costs

incurred in caring for children with Down syndrome, siblings left out on holidays,

recreational and educational activities, and material goods. It has also been reported that

children's exposure to parental stress, anxiety, and irritability resulting from the pressures

associated with caring for their disabled child is a disadvantage for siblings.

Moreover, communication deficits have a profound impact on the schooling in terms

of unfavourable school environment, bullying, lack of abilities of teacher to teach and

understand Down syndrome children needs, and curriculum rigidity. Education is one of the

most effective ways of breaking the cycle of discrimination and poverty that is often faced
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with children with Down syndrome. However, access to school is often limited by stigma,

lack of teacher training, unconducive school environment, lack of understanding of these

children needs, and lack of support in the classroom and learning resources. By preventing

children with disabilities their right to school, it has a lasting effect on learning,

accomplishment, and jobs, hampering their capacity for financial, social, and human growth.

There are two main types of schools in most developing countries: General education schools

and special schools. Ordinary schools are supposed to educate all children regardless of any

special needs, but special schools are designed to meet the educational requirements of

children with special needs. These special schools are present only in major cities, whereas

regular schools are present everywhere in metropolitan, suburban and rural regions. Due to

the non-availability of special schools in the vicinity, these schools also teach children with

Down syndrome. Since the prevalence of ordinary schools is considerably high, most of the

children with Down syndrome get to study in these schools along with their siblings. Besides

all the efforts made to deal with Down syndrome children needs, the number and

geographical distribution of special schools is not enough to provide education services at

their doorsteps. In mainstream schools, the perception of Down syndrome child is shaped in

accordance with the expectations of the teacher about school performance and behaviour in

each of his students. A child with Down syndrome would exhibit poor performance at school;

therefore the child would be treated with ignorance and rejection (A. Tsiplitaris).

Furthermore, children suffering from Down syndrome will have to deal with strict academic

standards during school age such as double test. They struggle with the symptoms of the

syndrome on the one hand and suffer from discrimination of prejudices, myths, and

stereotypes related to mental illness on the other. In addition, teachers are often unable to

understand their students ' mental and emotional needs and personal issues. This gives birth

to conflicts, frustrations and learning difficulties. Children with Down syndrome are usually
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“underestimated” in schools. Generally, children tend to create groups with common codes

such as interests, ethnic identities, and languages. When Down syndrome children exhibit

different behaviour in comparison to the behaviour displayed by normal kids, classmates and

peers try to isolate them, mock them, and alienate them. Besides this, children are observed to

be harsh and strict judges and they employ oral and non-verbal group violence against these

“different” children. These children are also ascribed to adverse and derogatory

characteristics; they are criticized and violently deceived sometimes. In an interview of Miss

Maria Naqvi, a special education teacher from Rising Sun Institute for Special Children, she

stated, "These children have the capacity to work and learn in the same manner as other

normal kids; however, psychological misperceptions on the part of parents and teachers that

they are "useless" leads to negative attitudes and mistreatment of these children in schools

and homes.” In a recent study by Pasha, which included 300 teachers in 75 government and

private primary schools in Lahore, he identified that schools are presently unprepared to

include these kids due to numerous reasons: absence of transparent admission

policies, absence of understanding among school administrators on how to implement special

education, inaccessible school infrastructure, and lack of training opportunities for teachers

for them to be able to teach special education curriculum. Usually, teachers in developing

countries are not equipped with the proper skill set to teach Down syndrome children.

Therefore, these children are not being given proper attention from the teachers. According to

the Pakistan Journal of Medical Science, seventy percent of mainstream teachers felt

they lacked the abilities and exposure needed to tackle the needs of Down syndrome children.

Limited resources in classrooms were a key concern for 81% of teachers (Haider). Similarly,

Rieser asserts that curriculum rigidity, low quality paediatric health services, and an absence

of experts to assist in assessing the Down children's special requirements are some of the on-

going issues concerning Down syndrome children schooling. Since very little attention is
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paid to the education of kids with Down syndrome, wages paid to the teachers are

comparatively low and teachers comparatively have a short stay at the job. Thereby, there is

no continuity and assurity in the learning process of these kids. Due to the lack of awareness

and mental impressions, children without disabilities are preferred to Down syndrome

children by parents and teachers, because they feel that these children cannot engage actively

in classroom activities (Advani).

To conclude, teachers can be the best lever for changing the attitude of the common

people towards Down syndrome children. There is a dire need for the revision of the teacher

training programs. The training of the teachers can bring about a constructive change in the

school culture and the educational problems faced by Down syndrome children. With the

effective assistance of parents, these children will become active members of society. The

challenges of Down syndrome children incorporation in normal classrooms can be eradicated

by inspiring positive psychological images towards these children, making curriculum

meaningful and versatile to meet these children’s demands, adopting success-oriented

assessment schemes, and involving society and family in their schooling. Moreover, there is a

need of the hour for strong political commitment to enhance the lives of Down syndrome

children and their families, and to ensure a favourable environment for them. Furthermore,

media can also play a pivotal role in the support and awareness with regard to the challenges

faced by Down syndrome children and their families along with their possible solutions.

Also, mechanisms should develop so that mothers of these children can voice their opinions

for the improvement of services and integration at a policy level rather than depending

entirely on professional advisors. Disability is not inability; therefore, we, as a society, should

collectively join our hands to work for the better future of the Down syndrome children.

Word Count: 2998

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