By Rita Malik May. 16, 2017
I’d hoped that my child, diagnosed with severe autism could be mainstreamed, could be like other children. We didn’t know it but this relentless hope was killing us.
Recently, while shuffling around my son’s bedroom in the dark, I stubbed my toe hard against his bed. Crying out in pain, I hopped around the room like an injured rabbit. Then I heard a laugh. My 18-year-old son was sitting up in his bed, laughing at my misery.
Such callousness would have stirred anyone’s anger. But as I heard Shiv laugh, I was overcome by a debilitating gratitude. Joy washed over me as I realised my autistic son had broken a major barrier. Until this moment I had yet to see him react independently to something. All his expressions up until this point had to do with himself, not others. Shiv could do a happy dance after seeing his own birthday cake, but he could not recognise joy or pain in others. My beautiful autistic son did not know how to react. And yet, here he was now reacting to someone’s pain with laughter.
I hopped over to his bed and I hugged him tight.
Shiv does not know that he has to call me “mom”. He does not know that he can ask me a question, ask me anything. This is my son, whom I’ve raised from birth, who at 18 years of age has never called out to me. “Mom, come here. Mom, get up. Mom, I’m hungry. Mom, I need help.” I’m desperate to hear these words from his lips, of his own volition. But I have come to accept that it is not to be.
There are many little things like these about Shiv that we’ve learnt over the years. He is different from everyone else in so many new and surprising ways. Shiv, we would learn over time, has a hard time with social cues, reading situations, interpreting feelings of others. Sometimes, he has no clue at all. He has revealed himself to us slowly, like a beautiful, poignant book.
Conventional wisdom states that the odds for mainstreaming an autistic child are not good if your child is not cured by age five or six. Cure equals normalcy.
Shiv was diagnosed at age three with moderate to severe autism. We were told he was cognitively delayed as well. As his parents, our only currency to survive was hope, so we traded it in large doses, by doing everything we possibly could. Thirty-five hours a week on applied behavioural analysis and speech therapy. Monthly visits to New York for intensive consultations with a renowned autism expert, a specialist in verbal behaviour. Experiments with special, gluten-free, casein-free diets and vitamin therapies. Ayurvedic practitioners who would read Shiv’s pulse and prescribe a series of homeopathic medications and exercises (pulling on earlobes and massaging his temples to stimulate his brain). We were desperate for a cure. Shiv was observed for hours, tracked on video, on tape, in notes and recommendations and goals, and we continued to live on hope.
Conventional wisdom states that the odds for mainstreaming an autistic child are not good if your child is not cured by age five or six. Cure equals normalcy. We clung to the simple wish that our son be ordinary. That he join millions of other children as they hurtled toward progress and growth. Mainstreaming is the Holy Grail for parents like us.
We didn’t know it, but this relentless hope was killing us. It morphed into pressure and guilt when he turned six and then at seven, we slammed into the feeling that time had run out for our son. Shiv was not going to mainstream. We had to accept our lot.
But acceptance is one of those lessons that is tough to learn. Last year, something shifted in Shiv. A new onset of tantrums, violent self-injurious behaviour that scared us. One day, I came back home to discover that he had punched in the dry wall in three different rooms, and punched his own head so hard that he’d given himself a black eye. I had to sit him down and threaten him with a wooden spatula until the tantrum died down.
Things got worse. We lost his therapists. He was often sent home from school. A meeting was called and we were told that if his behaviour escalated beyond a certain level, he would be shifted to a special facility with lockdown units. One day, Shiv ran barefoot across the snow-covered yard and into a neighbour’s house. For months after that, I had nightmares of him being shot at for home invasion. How would the police handle a wild-eyed adult-sized male screaming and flailing and hitting and trying to get into someone’s home? They’d shoot, wouldn’t they?
I couldn’t sleep. It was a dark period of my life.
It was only a chance visit to the Psychiatric ER that stopped us from placing him in a home and acknowledging that we’d reached a point of no return. We sat through hours of questionnaires in the ER and then came face-to-face with a social worker, who got Shiv started on some life-saving medication. His tantrums subsided and Shiv calmed down. And by the end of this nightmare so had we.
We have now learned to let go. Acceptance has seeped in and it has made all the difference. We no longer compare our son, with all his unique quirks and likes and dislikes, to others on the spectrum.
We have learned to look for the small gains, celebrate the small victories. The pleasure my husband gets when Shiv runs to the door to greet him with a smile or a hug. The first time he texted me after an open-ended question (“What do you want to say to mom?” And he wrote, “Mommy, I rely like to donut.”). The time I got mad at him for making a mess in the bathroom with his dad’s shaving cream, and he, seeing my brows furrowed in anger, took my face in his hands and kissed my forehead to make my frown disappear. The time his teacher showed me a picture of him with his BFF (my son had a BFF?). They were in their “man cave,” a sensory room, on beanbags, stretched out with their arms behind their heads, just chilling. The teacher said they were inseparable. I’m told my son and his friend hold hands across tables during class. Small joys. Small victories. They are quiet and hidden and fall like the snow.
I know now that my son will never be ordinary. He will be forever be extraordinary, and that is not just enough. It is more than enough.