The other day, I was at a movie which featured animated animals. Kids were all over the place, laughing, spilling popcorn, squabbling with siblings—stuff that kids do. An old familiar feeling, which I’ve never been able to banish completely, grabbed me.
I messaged my husband: When I see children do what most children do, it’s still a wrench. He messaged back, two words, which really say it all: Our life.
Our son, A, is autistic. He turned 12 this March, and like many 12-year-olds, he’s a gangly, towheaded pre-teen, who believes very strongly that he must not do anything he’s told to.
In his trendy T-shirts and Pete Sampras length baggy shorts, he looks like your regular kid, fresh haircut just growing out, graze healing on the elbow, two front rabbit teeth urgently in need of orthodontic care.
But A is not your regular child—he hasn’t been, will never be. From the time he was born, his autism set him apart from other children. It was almost as if he belonged to another world. A parent I know calls it Planet Autism.
What it translates into for most people afflicted with the disorder is a lifetime (till now, there is no magic pill that can cure autism) of living with a child who hasn’t come equipped with the abilities you take for granted in most other children.
The one thing you learn painfully is that sure, there will be changes, small significant ones, but for most of us whose children inhabit Planet Autism, it is a forever thing. You will grow old, but your children may never leave their childhood behind, to do the kind of growing up that goes with the territory—best friends, adolescent crushes, college, jobs, marriage, kids.
We coast on little joys. He is a powerful swimmer, a fish in the water. We put him on a horse a few years ago. A few weeks ago, I saw him trot, minus the stable lad; he sat upright, smiling widely, having a real blast. Our 12-year-old looks much younger than his age. He has no guile, no ability to dissemble. When he smiles, his whole face lights up.
He is what he is—a good-looking little fellow, who is quite happy not to use two words where one will do, and not use any at all, even if none won’t do. He has abilities which he does not, or cannot, reveal in the way people understand, because he does not talk, unless he absolutely has to. And even then, he mumbles. Clarity of speech has always been an issue for us, never for him. He gets by.
He had a few words by the time he was one, but he didn’t add to his vocabulary like kids do. He never did babble, like kids do. He didn’t do many other things that kids do. It took us a year and more to get a ‘diagnosis’. That’s when we heard the ‘A’ word for the first time.
We’ve lived with it, since. First trying to shut it out in disbelief, then slowly, very slowly, getting to a place where acceptance was the only recourse.
Looking back, and yes, often it is possible to do that without rancour and sadness and that overwhelming it’s-all-so pointless feeling, it’s been an incredible ride—bumpy, rocky, full of roadblocks, but irradiated with some sparkling moments. We’ve swung from the depths of despair to hope back to despair in a crazy daily see-saw. We’ve counted his words, mourned those he has lost, and celebrated new ones. And waited. And waited. For that sudden burst signalling an end to his silences.
We’re still waiting, but the quality of the waiting has changed. From oh-god-he’s-still-not-talking-his-head-off desperation to let’s-see-what-tomorrow-brings patience.
The intervening years have been full of trying to find the right people to help our son. And because we were blessed, we found some wonderful companions on the way. A college kid showed up at our doorstep one day, took one look at Mr A, and lost her heart. He was an angelic four-year-old.
With her, and a couple of other girls, both psychology majors, we put a programme in place, to teach him. Teach, as in getting down on our knees, looking at him, talking to him, and trying to coax any communication out of him.
Our Girls, as we call them, were pillars of strength, of wisdom (at 22 and 23, they told us things about our son that we were too dispirited to notice), of conviction. He can do it, was their constant refrain.
Four years ago, we moved houses. Then we discovered, by happenstance, a mother of a 10-year-old girl, who came gingerly into our lives. That
10-year-old and A met up while she was learning to rollerskate (he was already a whiz). Saying that she’d never dealt with disabled children before, the mom stayed on to watch a teaching session, and has stayed on. She is, with her now 14-year-old, one of A’s staunchest votaries.
He has come a long way, but he’s still got many, many difficulties. He’s a reluctant talker. He needs some help with daily living skills. He has started strenuously protesting against teaching sessions at home. His preferred mode of activity still remains, after all these years, listening and swaying to music—
eclectic choices range from MS’ suprabhaatam to Shubha Mudgal to A.R. Rahman, and the latest Hindi movie chartbusters.
We coast on little joys. He is a powerful swimmer, a fish in the water. We put him on a horse in the nearby stables a few years ago. A few weeks ago, I saw him trot, minus the stable lad, who has always had to accompany him till now; he sat upright, smiling widely, having a blast.
He has learnt to be very clear about his needs: not a silly burger, a pizza, okay? And he is on the whole, despite the now occasional meltdowns, a sunny, cheerful child. When he says a new word, it is celebration time. When he turns around and says good night, without having to be prompted. Or when he waves bye, and races off for his evening out. Little things, but for us, huge steps.
In our sobering moments, we are forced to introspect—what has all this meant for us as people, as professionals, as a couple. There is, of course, the cumulative wear and tear of bad-hair days. Sometimes just a few horrible seconds can be enough to wipe off the strength to face a working day. There’s also the realisation as we edge well into the mid-forties, the mental and emotional energies to stay connected—to friends and family—are becoming harder to find. It is getting tougher to catch the odd concert, or play, or do the spontaneous, on-the-fly thing. Attendance at birthdays and marriages is a factor of what kind of place, what kind of people—for him to spread his wings in, or for us to not squirm if he loses it, and behaves in a manner that generally people ‘do not’.
The road ahead is getting harder as he gets older. We need to be certain that he will be cared for, and loved, when we are not around . When he’ll communicate more easily, and we won’t have to translate. When we get old enough to want caring, will we still be able to care for him?
When I asked one of Our Girls how she sees him today, she said, without missing a beat: I see a handsome little fellow, who is so much more connected, more able to be with other people.
He is clearly a work in progress. Last year, around this time, we left him for 10 days and went to the US. We attended a workshop on autism near Washington, and we had two spare days which found us, unbelievably on our own, in New York. A stayed at home, minus either of our parents or other family members, because he is most comfortable in his own space.
Even a couple of years ago, we would have laughed off the possibility of being able to take off like this without him.
But the fact that we could make it happen, with the help of Our Girls, his didi, and other friends who dropped by and spent time with him, was and still feels like a miracle. Two of the girls spent the nights; in the morning, he would go off to his school, and in the afternoons, he was in session; evenings he would go riding. We called every day and were told: don’t worry, he’s doing fine, all’s well. Each moment of his day, he was with people who loved and cared for him.
It was an enormously liberating feeling, because we hadn’t been anywhere by ourselves for over 10 years. It was one of those times when we felt that possibilities did exist, that it wasn’t all a dead end. And it is one of those things we dredge up when things hit rock bottom, as they are wont to.
The key to survival has been something we have had to internalise, something we forget during dark moments: to have hope, abiding, continuous hope, without expectation. The other day, an old friend said something that other friends have said on and off: “I don’t know how you do it.” I told her what I have those others—well-meaning, concerned people all: “You would do the same, if it were your child.” We are not these saintly creatures, anointed from above, worthy of pity or sympathy.
We do it because that’s all there’s to it. It’s our life.