Anjali shares the trials and tribulations of being a mother of a Special Needs child, diagnosed with ASD, with her diary, in this short story. She’s dismayed that even the NCR does not have proper schools for such children. An exclusive for the Special Feature, for Different Truths.
Dear Diary,
The month is February. They call it one of the best times of the year in the capital city. The city’s limited flirtation with winters is almost ending creating a little but palpable interlude for spring before summer arrives. The time is dawn. Outside as the day is about to break, there is a feeling of everything bursting into life back again. Initial strokes of spring are visible here and there pushing life to leave the blankets it had been wearing for last few months and get out and fly again. There is a certain joy which is typical to this time of the year. And there is something inside me which is making me hopeful again!
It’s a special day! I look at the apple of my eyes who is sleeping peacefully. Looks so beautiful! Touch wood! He is precious; he is special! I gently caress his hairs, he isn’t that peaceful when awake. I think about what kind of reveries would he be lost in? At least in his sleep, he is like any normal child, no one can differentiate or can sympathize with my child or look at him with those eyes which speak either of pity or contempt. Some of those eyes look at me too – with a glance which is again some indifference or anger as if trying to blame me for something. Sometimes I even doubt if they know what it means to be different, to be special?
It’s his birthday! Vihaan turns six today! Very soon when the day would break, my Ma, his “Amu” would be up and all set to prepare the line of delicacies she has planned to make for him on this day! And here I just can’t help but feel so nostalgic. How after so many prayers and treatments I had conceived. Vihaan; the epitome of my eyes came to us as a blessing! Blessing to an already strained relationship after twelve years of marriage and many failed attempts of desperately trying to conceive.
Three years back at the age of three, Vihaan was diagnosed with ASD (Autism Spectrum Disorder). It was disheartening, to say the least. Though the diagnosis was out, yet there was a strong sense of disapproval for it! I still remember the day when the news was shared with the family and how Ma and Pa had simply 
dismissed it saying that I was crazy! They had their reasons, seemingly logical from their perspective. They hadn’t seen and heard much about this disorder. What they had heard was a label called “mentally disturbed” for a remotely similar condition. And Vihaan wasn’t close to it and they wouldn’t accept anything but normal for Vihaan around whom their world revolved!
Vihaan’s initial signs weren’t that unusual; considering the tender age of three and the fact that children show variations in the timing and pattern of development milestones at that age. He often used to flap his hands and jump around incessantly. But so what; he was like many other hyper-energetic boys and girls of his age. He used to be reticent in making eye contact and shy away from most of the social interaction. But that wasn’t unusually abnormal since many kids of that age are not forthcoming in making a new social connection. His speech wasn’t happening but many normal kids take time till they turn four! The breaking point, though, came when Vihaan stood plain blank at his playschool performance, while the other kids happily looked at and imitated their teacher as well as each other. Something broke in my world that day!
Amidst the elders still challenging me on the decision to approach a development paediatrician for a three-year-old, stood I, at the crossroads with the verdict which was out and which I knew was true! What worried me most was ensuring an upbringing of an uncommon child as normally as I could in my single parent status. I was determined; undeterred; least did I realize and completely did discount how 
miserably this society would fail in accepting Vihaan as a special child in their normal world.
There was a lot of love, support and sharing though; which came from other parents sailing in the same boat. But Life wasn’t easy, though there was a label on the problem now. The label did help in understanding the underlying cause behind the aberrations in Vihaan’s development milestones as well as the behaviour patterns. It also helped us in planning to cope up with the mammoth task of managing an autistic child. Vihaan used to get upset even with a small change in his routine. There used to be times, when not seeing me at the door to welcome him after school, Vihaan used to become paranoid. His mind anxious as if some panic button was switched on not seeing his mother around. Many times I had to abruptly end my client calls and work from home seeing Vihaan getting inconsolable.
A lot of effort went inwards which showed improvement in Vihaan to a considerable extent. But much went beyond me, Ma and Papa. The everyday challenges in public places, the mindset of people towards our child and the associated prejudices; limited opportunities and vistas for the uncommon child, everything was so difficult. Often Vihaan would be pointed out as “mental” by the parents of Neurotypical children, whenever in public places or being looked at with over sympathetic attitude. In fact, expecting a normal behaviour from the society for my not so normal child started to seem like a distant reality! The concept of Inclusivity seemed completely broken; limited only to the NGOs and the special schools working exclusively for children like Vihaan.
After several special therapy sessions, a lot of training and coaching with my child at the playschool level, when I went around looking for good mainstream schools, the schools disappointed me. The so-called big schools shared their helplessness to accept a child away from normal in the mainstream. The reason – many of the parents of Neurotypical children didn’t want special kids to study with their children. The schools being heavily dependent on grants from such parents didn’t want to go the other way. Till this date, even after trying for two years continuously, I still haven’t been able to get my uncommon child an admission in a common school. Vihaan has been rejected in multiple schools in the NCR region and I have fallen flat in my efforts.
Every morning as I walk to drop him at his special school, I dream with open eyes. Looking at the dozens of children dressed in their perfect school uniform, walking or boarding the buses to their schools, I wish that maybe one day my dream will also come true! The little one who walks next to me doesn’t swing his water bottle; neither chatter endlessly about the birthday parties nor discusses the long list of friends that he likes or dislikes – things that other children of his age usually are talking about with their parents during the morning dose of conversation! Rather, he just walks by my side, talking in his head to his imaginary friends oblivious to what I contemplate for him each day!
I sometimes feel how I keep shrinking my dreams for Vihaan. While my friends want their children to get an A, be an all-rounder, go to foreign universities for studies, I just pray normalcy for my child! To grow normally and perhaps lead a self-sustained life. To find a suitable life partner and just be happy. Almost at all the times, with my eyes open and closed, I weave beautiful tapestries for him.
Yesterday Papa asked me if I was sure. If I really wanted to do this?
There are many opportunities of a similar kind that I have dismissed in the past just giving this society another opportunity to treat Vihaan better. But I have been failed multiple times. I know why Papa asks this. He cannot travel due to medical conditions so Ma also won’t be able to stay with us for long! It’s going to be tough but I am prepared.
Normalcy still evades us as a society here, Papa. I tell him.
Outside, the dawn has already started to morph into a beautiful morning. And inside me also, a ray of 
light in the form of a decision has taken shape. I had been thinking about it for so long. Had done a lot of research and this seems to be the right decision for Vihaan. And I feel determined. In fact, I have already made inquiries in various schools in Raleigh, and all of them seem so keen and open to accepting Vihaan.
I have agreed to and signed for a four years onsite US assignment, a wish for a normal life for my son; ready to explore new territories and opportunities with him; for him.
I sign off now, all set to explore new vistas for my child, hoping him to accelerate on this path to normalcy! To a new start; a fresh beginning!
Till our next rendezvous, signing off dear diary!
Author’s Note
As a society, we are inherently resistant and incapable of accepting deviations from normal. Autism is one point in the case; our attitude towards physically disabled or even economically disabled isn’t positive. We are either predisposed to being over-sympathetic or overtly judgemental. A part of this behaviour also comes from our inherent habit of undervaluing the normalcy in our lives. Most of us take it for granted. As parents to normal kids, we fret and moan on the conditions around; our everyday schedules being impacted heavily post-parenthood, tantrums, being caught in the rut but what about families which have to plan even the smallest detail lest anything should get disturbed, seeking it to be “just normal”! They plan things to be normal while the normal ones take it for granted.
This story is just not about one Vihaan, who happens to be related to me but about many autistic children in India today. Let’s pause and think before we call them “mad” or “mental”. Because they are not. Let’s not look at them with sympathy because they are capable in many respects which even Neurotypicals aren’t. Let’s give them a chance because they truly deserve it. They are just like normal children with their brains and sensory organs wired differently making them anxious in few aspects but they do respond; beautifully to empathy and patience. The least we can do is to accept the “not-so-normal” part of these children normally sans our prejudices and with an open heart embracing them at the same pedestal of opportunities, love, and compassion as children.
Are we ready to take a step forward towards an inclusive society in A true sense?
©Anjali Sharma
Photos from the Internet
#SpecialNeedsChildren #ASD #ChildWithASD #BringingUpAChildWithASD #ShortStory #AutismAnAdvocacyInitiative #DifferentTruths
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