Straight from Archana’s heart

Hi, my name is Archana and I am a parent of a 6 yr old boy, who was
diagnosed with autism around 3yrs back. I clearly remember that day and still get goose bumps when I think of that moment when we were told, Mr and Mrs Dabhoiwala, your child has autism….god!! I can’t describe how I felt. My husband was quite strong and held up pretty well…but I just burst out crying..and the only thing I asked was…”will he ever get married??” (thinking back..god how stupid of me to ask that question!!!)

That ride back from the evaluation centre was a looong silent ride… both my husband and I were feeling bad… very bad… but neither of us knew why? Yes, I’d heard the word Autism before… knew it was supposed to be bad…. But why? How? What does one do with the diagnosis? Absolutely no idea….

I came back home and my family had already opened up some sites on autism. So we started looking at symptoms of autism….

First one said… no eye contact… we looked at rohan… he looked right back at us..

Second said… in a world of their own… baap re.. if Rohan was in a world of his own.. the world would have been a happier place to live in.. a few kids would have been saved from his wrath.. not to mention a few of my family members!!! Rohan is an extremely connected child..loves to be around people….

Third said… lining up of toys, spinning wheels of toys, etc… Rohan never showed any interest in toys.. he loved to go through his books.

Then it started….fourth said.. poor communication… ok yes.. rohan at 3yrs of age had a very very limited vocabulary.. but I was told… arre ladka hai.. boys talk late… chalo..that point also we shall discount.

Fifth said… adherence to routine… ok… rohan had been a bit tantrummy off late… I was working at that time and I would get a call almost everyday saying.. didi, who mera baal kheech raha hai.. who ro raha hai.. pata nahi kyon….etc etc…

Well, that afternoon was spent in trying to fool ourselves that rohan really does not fit into any of the so called symptoms… but deep inside…. My husband and I both knew that something was not right and we needed to get our act together and do whatever it takes to bring this little rascal of ours in line!

Standing here today… we are in a muuuuch better place than when we started and these are a few things ive learnt…

Like the famous paint ad that has the tagline… mera wala pink, or mera wala green…. Autism is also…. Mera wala autism, or rohan wala autism, or archana wala autism.. or just add your childs name wala autism…. Each and every child on the spectrum is different… and I cant specify it more! Rohan wala autism is something like this…

Rohan had poor communication but was very social… that’s why when he used to play in a group, instead of getting attention by talking, he would either push or take away some toy or hit his friends.

Because of his poor communication obviously his social skills were absolutely zero.. group setting that required a child to wait, share, take turns, etc, which a typical child would learn on his own, were all missing.

Rohan also had very very minimal play. Actually till date, he would rather flip through a book than pick up a toy and play… because for play you need to be able to imagine a little bit.

Rohan wala autism also comes with varying SI needs which is apparent in his need to
squeeze people, hug them tight, or just clench his own body , or his need for excessive swinging….

But we’ve learnt slowly and steadily that:

Rohan is a visual learner… put him on a visual schedule and life becomes easy for all 11 members of my family!

Rohan has a big issue with waiting… again put him on some sort of a visual cue for time… life is better..

Ive also learnt that when you enjoy and work with Rohan…its more productive than when I’m worried and stressed out….

Ive also learnt the biggest lesson of them all….DO NOT COMPARE YOUR CHILD TO THE OTHER ON THE SPECTRUM….. look for that special thing your child does… it maybe just a tight hug or a sweet smile… but its yours to cherish

But the most special thing that I have learnt is that truly..these kids… are god in its most purest and innocent form! Ask your child to lie….you think they can?? You think they can cheat?? Can you imagine a world like that??

I’d like to end with a beautiful paragraph written by a parent of a child with special needs. I have taken the liberty to modify it so that its more appropriate to us Indians.

Welcome to Bengal

I am often asked to describe the experience of raising a child with special needs – to try to help people who have not shared that unique experience to understand, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Kashmir. You buy a bunch of guidebooks and make your wonderful plans. The Mughal gardens, the mountain resort of Gulmarg, the sking, the lakes, the beautiful shikaras, the cool cool weather. You may learn some handy Kashmiri phrases. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Bengal”
“Bengal?!” you say. “What do you mean, Bengal?” I signed up for Kashmir! I’m supposed to be in Kashmir. All my life I’ve dreamed of going to Kashmir.

But there’s been a change in the flight plan. They’ve landed in Bengal and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s less flashy than Kashmir. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Bengal has hill stations like Darjeeling and Kalimpong, Bengal has the sunderbans forest housing our national animal, Bengal has also given birth to Rabindranath Tagore!!

But everyone you know is busy coming and going from Kashmir, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Kashmir, you may never be free to enjoy the very special, the very lovely things about Bengal.

We are lucky to have a large supportive family that ensures that Rohan is never in a world of his own…
We are lucky to have friends that let me “borrow” their kids to teach Rohan how to play..
But most of all, we were lucky to have met Reena at a time when all we knew about Autism was barely how to spell it!!
I hope that this event that Reena has organized helps to make Autism a more understood and an accepted phenomena.
I hope that next time you see a child misbehaving or throwing a tantrum or acting weird…you will not be quick to judge, but you will be quick to understand!

Author : Archana

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