Article written by Sibling

[Guest guest]

Hi listers

I would like to share with you a story written by the elder sister of a boy

withautism in Malaysia. It's published under " One Voice " monthly column that

focus on learning disabilities.

http://thestar.com.my/lifestyle/story.asp?file=/2004/12/2/features/9523510 & s

ec=features

Celine & Leong

=====================

Trials of an autistic child

The world can be a confusing - and hostile - place for an autistic child.

TAN KIM MEE gives a poignant account of the challenges facing her special

needs sibling.

The arrival of our brother was greeted with much joy in the family. From the

moment we set our eyes on him, our hearts melted. He looked so tiny and

vulnerable. He was the quietest baby in the hospital's nursery. We named him

Tan Seng Kit.

When we took him home, Kit, as he is affectionately called, announced his

presence by crying. He enjoyed being carried around and he loved outdoor

walks. Kit was also fairly observant and friendly. As a 10-month baby, he

could point to a dog and repeat the word after us after several attempts. He

mingled with other babies effortlessly and made everyone smile with his

engaging laughter.

Then one day, he fell very ill. He had diarrhoea and high fever and was sent

to the hospital where he was given a strong dose of antibiotics.

My parents took Kit home after a night's stay at the hospital. It was a

harrowing experience for my parents to see their baby wailing in pain and

being fed multiple medications. But nothing was going to prepare them for

the anguish they would experience thereafter.

Things started to change rapidly after that. Kit did not smile as much. The

infectious laughter was gone. He seemed aloof. His interest in animals

plummeted and our neighbour's dog, which he used to adore, was more of a

monster to him. The barking drove him crazy. I didn't know where my Kit had

disappeared. Please bring back the old Kit, I pleaded with God but to no

avail. He was going to be like this forever.

Kit was a slow-learner. My mother took him to a speech therapist when he

couldn't utter a complete sentence by the time he was four. Despite a year

of speech therapy, Kit did not improve. Subsequently, he was sent to a child

psychiatrist for a check-up. After a few tests, he was diagnosed as

autistic, a mental disorder that delays speech, learning and social

interaction.

My family was devastated. At that time, we knew nothing about autism. But we

wasted no time in researching about this " invisible enemy " that was

gradually consuming my brother. My parents were determined to encircle him

with mentally-abled people and normal surroundings. With the assistance of

the child psychiatrist, he was enrolled in a regular kindergarten. He had

difficulty learning the basic ABCs and 123s but the teachers knew about his

condition and were very sympathetic towards him.

But sending Kit to primary school proved to be the biggest challenge.

Initially, we faced many bureaucratic parties which tried to prevent my

brother from being admitted into a normal school. They were uninformed and

unaware of autism. The education authorities told my parents that their son

was " retarded " and should be sent to a special needs school with all the

other " retarded " pupils. My parents were furious as they felt that Kit had a

fairly good chance to lead a normal life given the appropriate treatment and

education. After a few more protests, the school eventually accepted my

brother. As we learnt later, there were many more obstacles that lay ahead.

Just like any other person with autism, Kit had behavioural issues. Due to

his occasional outbursts that were compounded by his speech impairment, my

mother accompanied him to school. Unlike in some developed countries where

special needs students are provided with teacher aides, there was none to

speak of when my brother went to school.

So my mother stayed outside his classroom daily to guide him in his studies

and to manage his behaviour. Some of the teachers were not pleased that my

mother was there all the time. There were times when she was not offered a

chair to sit on to assist my brother when lessons were taught. The teachers

hardly paid extra attention to Kit. However, there were a few understanding

ones.

My mother often had to make sure Kit would not disturb his classmates with

his sudden eruption of uncontrollable laughter and prancing around. This

caper of his caused other students to laugh at him and distracted them from

their schoolwork. Some even imitated his every move.

" Kit is stupid and crazy! " some of his classmates taunted. It did not help

that even some teachers and parents echoed similar insults. There were also

times when other children hurled verbal abuses at Kit and he would retaliate

by hitting them as he could not express his anger verbally.

To deter other parents from kicking my brother out of school, my mother had

to apologise profusely to the same uninformed parents who called Kit crazy

and stupid.

In some instances, their kids would hit my brother when my mother went to

the washroom or cafeteria. They did it because my brother didn't know how to

complain. We only knew about it when we saw bruises on his arms and legs. Of

course, the other kids would deny any wrong-doing and when my mother

politely asked their parents, they were adamant that my " mentally retarded "

brother hurt himself instead.

But my mum had a way of getting the truth from the kids with her little

treats of candies and chocolates to find out who were the culprits who hurt

Kit. Sadly, the children were more honest than the adults who chose to view

my brother with their own distorted perceptions of him.

Throughout Kit's primary school years, he was a loner. Other kids did not

want to play with him during recess. He would play on the slide all by

himself. His classmates all sat away from him in class and did not share

their snacks with him. This especially disheartened me, as I knew how

enjoyable it was to play with one's friends, especially during recess. My

only consolation is that Kit

may never understand the need to have friends.

For six years, my mother faithfully stood outside Kit's classroom enduring

the scorching sun from 8am to 1pm, Monday to Friday. Every year, the

teachers, parents and students made life difficult for my brother and

mother. Although they made no effort to conceal their hostility and

contempt, for the sake of Kit, my mother pressed on.

I left for Australia for my tertiary education when I was 21. Kit was 11

then. He enjoyed going to the airport, going up and down the elevator and

eating ice-cream.

I, on the other hand, was in tears as it was my first time being away from

my family. I hugged Kit but he did not reciprocate. It hit me hard even

though I knew some autistic children do not show affection in the

conventional way. I wanted so badly for him to know how dearly I would miss

him. Did he know why we were at the airport? Could he comprehend all the

emotions that flowed that day?

Now Kit is 15 years old. Sensing that my brother would not be able to cope

with the demands placed on him in a national school, my parents opted to to

send Kit to a home-schooling institution which accepts slow learners. Kit's

speech is still weak and the sudden outburst of laughter and waving of arms

in the air still persists. Having social relationships is not within his

reach yet. In terms of physical growth, he is taller than me and his voice

has cracked. Even a few strands of hair have grown on his upper lip. Kit has

reached puberty but his physicality disguises a very troubled mind.

Although mentally he may still be a small child, I know he yearns to express

his feelings and play with his peers. Often, we have to contend with

strangers staring at him oddly when he hits people or throws things or

laughs uncontrollably. How could they have known that those were his means

of communicating his feelings?

My mother constantly worries about Kit's future. She wonders about what will

happen to him when she is no longer around as Kit is very attached to her.

This is a predicament faced by many families with special needs children.

Admittedly, there is no easy answer.

Because she spends most of her time with him, my brother refuses to go

anywhere without her. My mother is the only one who understands his every

action without him having to utter a word. Kit is happiest and most

comfortable in my mother's presence. It is like they have a small corner of

the world all by themselves.

One of the most depressing moments of

my life was when my mother said to me: " Kim, if I die, I want your brother

to die with me. "

I frequently look back at that scenario and wonder if my mother is right.

Would Kit be better off leaving this harsh and bitter environment to enjoy

his little corner in heaven with my mother when she passes away? Perhaps in

heaven, he would not feel trapped in a world he can't understand.

To me, my mother and brother are the two strongest and bravest people I

know. My mother has made every sacrifice possible to make my brother's life

better, while my brother has taught me to smile and laugh no matter what,

and to be thankful for everything.

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