Kaleidoscope

A child with a disability would make a writer of most parents. It isn’t really about having just one child; we have been given a kaleidoscope to see life in various combinations of colours and patterns.
Sometimes dark, sometimes bright.
Sometimes straight lines, sometimes curved confusion, sometimes beautiful patterns. Sometimes strange, sometimes like we are seeing this for the first time, sometimes like we see it every living moment.
I can’t generalize endlessly; I’d rather talk for myself.
My son, 28, has a developmental disability with autistic features. He doesn’t fit in any category of disability-or ability. If he can think, he can’t reason; if he can reason a bit, he can’t draw inferences. He can understand but he has unreasonable fears, he takes a long time to learn but whatever he has learnt is retained efficiently. He needs routine but he is inherently disciplined. Individual attention makes him cringe but he would disappear even in a group of three. He cannot express feelings yet he is hyper sensitive to vibes, bad more than good. He can be so vulnerable to criticism and he can at the same time wear a dead pan mask when threatened. He can catch a joke late in its life but his unexplained ‘laughter attacks’ are remarkable. He can remain in a state of total inactivity for hours and when just when I begin to feel all queasy inside, can burst into the most charming smile. He can be expected to finish brushing his teeth in exactly the same number of minutes and gargle the same number of times with the same noise. Or fold his clothes in the same way, far from perfect. Autism makes him find comfort in repetition and rhythm. Nursery rhymes still bring a broad charming grin from him. To get him to do something new, is like placing an order in a five star hotel. Say it to him and forget it. It will sink in when you have given up. Conditions don’t work with him. He may get bullied or tricked into doing what we want the first time, but after that he smartens up. But not enough to take proactive decisions. Stubborn like a well bred mule he can be, safe in his room, letting us bark useless orders at him. He has learnt to do without many comforts in the bargain. It can be very frustrating –after all it is the greed we have for something or the other which provides us the incentive to desire that something and other. He lives in a happy world without desires or goals, without the pull of self created problems or the worry to have to prove his worth.

.Well, this sounds pretty simple. Or compactly nutshelled. Most likely he is silently much more complex than that. To reach this far in my understanding of him, I had to contend with expectations, endless trials, errors, tears, smiles and breath taking ups and downs, not to forget sleepless nights when I would ask myself “am I doing what I should be?” –from the night he was born.

When he was three, I tried to bring friends to him. But he always came unstuck, like a badly fevicoled toy. I tried to make him independent, and today he is more dependent than ever on me. I struggled to get his handwriting even between the two lines and four lines and today it still overflows all over the page like a garbage bin. I thought we would start a vocational centre at home for him and others like him; today he is happy just taking care of the pens carefully pinned on his shirt the whole day long. I taught him to cook, self serve food and eat without spilling and his best moments are when he merely opens his mouth and food feeds itself from my plate…

But has tragedy struck just because a 28 year old can’t reason too much, or write well or because he wont touch food unless I give it to him? Or because he hasn’t yet figured out how to tell a bigger number from a smaller number. Or because he can only see Life through the window I open for him. Or because he puts all his faith in me, like eggs in one basket?

Am I a cross carrying martyr for having borne such a unique child? For merely reinventing myself all the time, reconfiguring my days, my thoughts, my hopes and expectations in the context of his? To think of him as a 10 year old, have expectations as from a 8 year old and to treat him as a 28 year old…or as instinct tells me.

That would be too grim a term for a lifestyle which is more unconventional than painful, more creatively flexible than just easy. Task analysis is now second nature to me as it the ability to see life upside down, inside out, fragmented or holistic.

Not to talk of all the Plain Gains…

Imagine. In ascending order… A diplomatic passport with a bouquet from society :“I understand…I am sorry…you are great(!!)”, a whole new view of life, a different time scale in which Time either goes back, stops, pauses or races according to my son’s need, and the humility and the awe of Total Trust from a child (God should be feeling that way)…

I would rather keep the kaleidoscope, if not be one myself.