15 Jul 2018

Dear Kanva...

I have wanted to write my journey about Kanva’s therapy for quite a while now. There have been days when I wrote a few pages and then decided not to save the document, and then there are days when my hands trembled to type a few words. But today, I want to write and I want to file it under “hey you are stronger than you know, and your kid is stronger than you” category. Coz down the memory lane when life gets tougher, this story will give us hope and for someone seeking support on the internet on Autism, this story will let them know they can, if they do not give up.

All of you following this blog know that I am blessed with twins – a boy and a girl. Let me fast forward to their first birthday, while my daughter spoke a lot of words, Kanva did not. I observed that he used to try and do his chores on his own, he would never asked for help; being independent is a good concept, but at his age it was a little disturbing. I also noticed that his eye contact was not up to the mark, he would watch the ceiling and talk. Every time I or my dad brought this issue to rest of the family, we were asked to be pateint coz the boys usually have delayed speech. But I attained clarity when Kanva twisted his ankle and we visited an ortho, the doctor asked us a question “How does he tell you he is in pain?”.

“He takes my hand to the area of pain”, I said. He insisted I take the child to AIISH (All India Speech and Hearing institute). 24hrs to his advice, I was with my 2 year 6 months old boy answering questions on his milestones; to every question my answer was a no and to every question that required a no, my answer was a yes. I realized why my child didn’t like my hugs, said no to proximity and why he avoided kids of his age group. It was the toughest questionnaire of my life and I failed; very badly – it could be “autism”, they told us.

The first thing I did after that session was to put down my papers, my child needed me and only I could help him; but I needed help too. My dad, and I never have conversations, we hardly talk; that night there was a lot that was spoken but all in silence. The amount of research he did over the internet, about the disorder and on who should we contact for all the help, I wouldn’t dared to. I knew acceptance was the first step, the more I denied it, the more it would affect Kanva. I wrote a thousand times that I will give all that I can, all that can get my boy the basics to survive in the world.

Turning Kanva into a normal child was nowhere in my agenda, he needed help in communicating his needs is all that was struck on my mind. We started therapy classes at AIISH, he wouldn’t enter the classroom, for days the only activity was to make him enter the room. Apart from my father my only solace was Osho, I recollect crying to him and speaking my heart out. “You have accepted the issue and half the battle is won, it is going to be alright”, and the references he gave me to take things to the next level, I am forever indebted to him.

Food, water and bathroom are the basic necessities and they were the first to be addressed. Every day I would keep the plate in front of him and prompt him to ask for food. He would get it only if he asked and he wouldn’t. There were days when he went to bed without having a bite of food, plate was thrown numerous amount of time, at times he would want to snatch the food from me, he would try finding food from the kitchen himself and I finally had to lock the kitchen; I was accused to be a stone hearted, may be I became one. I hated myself, and I have punished myself after he slept. But what has to be done, had to be done. Kanva lost around 4kgs but within fifteen days we saw a great change, he started asking for food, water and would nudge us for his loo visits.

He had sensory issues, he wouldn’t like to touch paint, walk on grass or wet sand; anything that made him dirty. I took him to the park, removed his shoes and let him walk. He would sit on the grass, crying and not moving an inch, but when it became inevitable he did it. He couldn’t withstand certain smells, he wouldn’t eat food like shavige and noodles coz of it’s texture. He had to fight this battle and only he could do it. We’ve smeared mud on him and made him sit for hours, made him climb the stairs many a times, splashed cold water on him, we removed all the articles over the wall/showcase so he couldn’t watch those and speak and for every eye contact he made I have given him positive enforcement. This is when I met Keerthi, the therapist and my journey became a focused one. Keerthi used to set goals every month – speech, regulation and allowing him to get interested in the world, relating himself with the people, one way communication, two way communication, one sentence commands, two sentence commands, addressing social problems, letting him know what symbolic play is and the most important bridging his state of mind.

Kanva was asked to narrate stories of his day to day life and every time his version and perspective surprised us. What we expected was never his answer; it always used to be out of the box. He knew the number of steps to the therapy classes and he knew what the color of the shirt Keerthi wore the previous day; his observation skills are always part of my conversation with everyone he spends his day with. He was taught how to use the sipper, suck the water from the straw, buttoning his shirt and allowing me to cut his nails without being scared. 

Kanva loved to learn and fell in love with Keerthi, I haven’t seen such a pure bond all my life. He genuinely wanted to go and play with the therapist and how amazingly Keerthi had changed our lives. My boy who refused to go out of the house started to ask why we aren’t visiting Keerthi aNNa if there was a holiday. Keerthi always told me that Kanva is the most intelligent student and his zeal to learn made him try never concepts with him; after a year I was told Kanva was as normal was Kshema, in fact he was actually much ahead of his age.

We decided to give a break of 6 months to his therapy and see how he does without it; and when I took him to the therapist later, I saw my non-emotional child all teary eyed to see his therapist. He narrated his part of life and all of it from his tiny little world. I’ve never seen him get angry over a missed opportunity nor have I seen him being jealous of his sister, from shouting to get our attention to calling me amma; I have re-lived my life with each of his milestone. I have celebrated his first kiss to me after 3 years and each time he asks for a hug I jump a thousand times.

I wouldn’t have done this without Kanva’s thirst to learn, Vinay’s assistance in taking care of Kshema, without Keerthi’s guidance and my dad’s persistence. To everyone on twitter, who’ve told me it will be fine, you have made me smile amidst all the chaos and you my girls Dopey, San, Sammy and Bee – love you for all your silent prayers. Autism in India is unheard of, pediatricians do not tell this to the parents at all. Early intervention is the best, everyone who has access to the internet, keep checking for monthly milestones of your child – physical and most importantly the ones that involve emotions.

I’ve listened to “Naa ee sanje-ge” song like a 100000 times all through the year and cried nonstop when was hard on my child. I need to end this article before I break down!