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Autism- The Challenge
25 important years have
passed. A certain ache reverberates inside the walls of my heart; my brain
comes to a halt even after all this time when I hear the word 'Autism'. A pair
of inquisitive eyes, disheveled curly hair, skinny body and the sound of ceaseless
cackling laughter fills my brain as I
gaze out of the window in the Blind People's Association, Ahmedabad.
All I can remember is
Lollipop, my brother of 23, still incapacitated, frustrated and lonely back at
home because he knows that he is not like me, not like any of us. My cheeks
flush with anger when old memories of his desperation floods my soul.
I am compelled to stop that
film roll. My eyes come back to focus; something nudges my attention. A small
boy of 12 years is grinning impishly up at me. He is shy and clutches his
mother's arm. I beckon him over. We shake hands and the word 'didi' slurrs out
of his mouth. My brother's face swims before my eyes again.
Two people are sitting
before me. They are Ayush's parents, both of them are wearing similar affable
yet worn out expressions. The father has a medical background. He tells me that
it took them almost 3 years and 6 months for them to realize that his crying
bouts were not normal. He was always
unwell but they had hoped that he was just short of sleep and would recuperate
with time. He never stopped crying and never slept at night. His parents were
perplexed. He did not talk at all. The doctors could not figure out till he was
a little older.
I asked them if they were
shocked or embarrassed when they found out that Ayush would never be able to
live the life of a normal boy. His mother says that they were sad initially,
but realized that giving birth to a child was a huge responsibility and just
because he was a bit different, it did not mean that he would be treated as
hopeless. 'These days he is laughing all the time, he is being counselled by a
psychiatrist so that he can sit quietly for sometime, eat in peace and start
speaking a few essential words with coherence. Even for sleeping 5 hours a day
he has to consume heavy doses of medicines.
They don't go to any social
ceremonies. 'He is very unstable (physically), it is impossible to make him sit
still even for a minute. Last week when we went to our village to mourn our
uncle's death, and he just escaped to an unknown place. We had no idea where he
had gone. It was nerve wrecking.' says the Father.
'He goes to study Gujarati
and Maths and we also keep him with Kumudiben Upadhay and Vatsala Ben
(specialists in this field) for a significant time because we feel that we
should do our best for him, and only then will he show some improvement. He is
able to write many things, but not unless we hold his hand. I am also teaching
him how to remember our address in case he wanders away from our sight'. There
are many other details that Ayush's mother wants to share.
I don't have the courage to
tell her that I cannot help her in any way except for telling the story of
their family's struggle to the world.
Ayush likes to watch other
kids play, but only from a distance. He
probably knows he cannot engage like others. He doesn't have any friends except
his parents. 'He is loud and very difficult to manage but he is ours' they say.
His father had considered bringing over a second child some thought, so that Ayush
can have a play mate at home but his mother had dismissed the idea because she doesn't think she should give another child a fair amount of attention. I watch
him as he wrestles with his father for a packet of chocolates. He is always
hungry because of the medicines.
The Blind People's
Association has been extremely good for him. He has been coming there for
almost a year now and there are subtle improvements. Ayush had been beaten
up by his exasperated mother as an
infant when he used to have those endless bouts of tears at night and laughter
in the daytime. Today, she cannot even remember the last time, when she had
slept well.
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Ayush extends his hand to
touch my friend. Sanghamitra, is taken aback but her face breaks into a
surprised smile and both of them exchange a long look. Ayush starts giggling
after a minute.
Two similar children with
two different fates. On one hand there is Lollipop, whose mother still has
difficulty in accepting that he is not like us, that he is special and not
wrong. He has grown more and more nonchalant with the passing years, he doesn't even speak without any reluctance. He abuses at times when people come too
close.
Ayush is happy, and a lot of
efforts have gone into keeping that smile on his face. He asks me in Gujarati
if I have a car for him. I reply 'nathi', meaning 'no'.
What future do we want to
offer to the next child that is born autistic? The one that will equip him to understand that he fancies cars, wants
to go on rides with his parents or the one that will make him silent forever,
when he realizes that the world is not big enough to accommodate a special child
like him. Lets make a mental note of what we decide to do.
Touching...
ReplyDeleteBrilliantly written .