Vedant has always been a special kid. We waited for him very long to arrive and when he did, it felt like it was a dream. He brought in so much happiness in our lives that I was scared to sleep else I might wake up to a different reality. With him came the inevitable dreams of what our lives would be with a child and what the future will hold for him. Everything seemed so perfect until we started seeing red flags:they whispered Autism every time I tried shoving them off until we could ignore them no more. I will be honest–I had never heard of Autism before this. Never knew what it was and what it meant. When Vedant was finally diagnosed, the enormity of it still did not hit me. I was not sure what had struck us…. There were days when I was in complete denial, adamant that he had been misdiagnosed. I would insist that he does not show one major trait or the other and it could just be a delay in reaching a milestone that we are getting too worked up over. But the fact remained that each day I noticed something that made me worry and forced me to ask the “what-if” question over and over again.
When the reality of it all finally sank in then came the more torturous task of changing our expectations. I had always wanted summer in my house to be filled with Vedant and his friends, playing and jumping around while I made them lemonade and spoiled them with cupcakes and french fries. Well, Autism decided otherwise. Vedant has no friends…. so his summers were spent in camps for kids with special needs and the rest of the time–just he and I.
I loved to watch kids playing with their dads, competing with each other, playing together. We tried different sports with Vedant. We enrolled him in summer and fall soccer camps. He was clueless and miserable with all the running around and kicking that he was made to do. He hated it, moreover, an organised sport did not make sense to him. We had to pull him out. We tried playing hide and seek at home and he had no idea what was going on and why. We did this every single day for months, hoping that one day he would begin to enjoy it. Nothing happened. Though one day I saw him running around the house, ducking under a table saying “hide hide” and then rushing to squeeze behind a door saying “hide hide” again. He got the game finally, but he modified it a little to suit him 🙂
Who does not want their kid to do well academically? We did too. We would bring him picture books and get excited every time he pointed to a picture and labelled it correctly. We were so proud of him. Then suddenly we started realizing that his vocabulary reached a plateau. He was stuck with just a few words. Colors, shapes, numbers, and letters made no sense to him. Any fruit was an apple and any animal a horse. It’s been almost 4 years and we are still where we were.
How cute it is to watch kids perform! Their stage fright, their innocent mistakes, their nervous eyes looking for their parents in that swarm of unknown faces…that fire fighter’s costume, the ballerina dress…these are memories that you would share with your grandchildren. We tried to encourage Vedant to perform. We started with several small acts that we did at friendly get-togethers- a kids song and dance routine on Father’s day, a blast from the past theme party, a send-off performance for a friend and many more. He seemed lost and confused in every one of those, not knowing what’s going on and what all the fuss is about. Then a very kind friend tried to train him for a talent show on a big stage. I could not have been more proud of him. A volunteer went onstage with him and helped him through the act. I don’t think I remember anything from that day except him standing on the stage..everything else was blurred by my tears. It was a day I’ll remember forever. However, the fact remains that Vedant was oblivious to all that had happened, and wanted to go home–away from all the noise and crowd, in his comfort zone. He was upset and uncomfortable. We decided not to put him through this again but for that one time it felt awesome to see him up on the stage…“performing”.
So many dreams shattered when Autism smashed against those shiny visions of our future. So what do you do when your dreams come crashing down? You make new dreams and you learn to dream differently. You learn to play a new game, be your child’s best friend when he has none, dance to his tunes and perform for him, with him. You reset your expectations and you dream again because unless you dream your child won’t .
Dear Tulika, If you don’t find comments don’t be surprised… It’s so hard to write about the genuine experience, which no parent should have to go through ever. This article tugs the heart strings of every parent with a special needs child…The emotions run so deep I just don’t want to revisit them… It takes a lot of guts to write about it let alone remember what you had gone through in the past. your blog gives a feeling to other parents they are not alone in what they are going through. And thank you very much for taking time to write about this genuine experience… How we handled the new reality – looking at successful people with autism like Temple Grandin gave us hope. Also channeling our kid ‘s obsession to teach him new stuff. I slowly realized his affinity for math and geometry in particular. Also working on goal setting..
It’s very encouraging to hear from another parent who has travelled the path I’m on. Thanks so much for reading
Your words have said it all… as a parent I comprehend every word you express in your blogs. I go through the same emotions … Life is too short to give up easy… If one chapter closes then open another one and never stop dreaming ….
Keep it flowing Tulika !!!!
Hey there! Do you use Twitter? I’d like to follow you if that would be okay. I’m undoubtedly enjoying your blog and look forward to new posts.
I’m sorry, I’m not active on twitter…something that I’ve been procrastinating about. I’m , however, on FB (www.facebook.com/braindroplets) . Alternatively, you can subscribe to my blog too. Thanks for showing your interest in my articles!
I have visited your website today. I wish to gain strength from parents like you.I am worried and cannot sleep each night after receiving the diagnosis one year ago. I am clouded by fear, despair and negativity. I am not afraid to parent a special kid but what after I leave the world scares me the most.
Welcome to my blog. My only advice is to take one day at a time. Plan for the future but do not obsess over what lies ahead. You will miss what is in front of you if you focus only on the future.