What I’ve learnt from caring for a child with autism spectrum disorder
My son is just as human as any other child. I don’t give him — get ready for this — “special” treatment. Issa is not different: he merely processes data differently. PHOTO | FILE
What you need to know:
- Since I have lived with HIV for more than half of my life, many people would suppose that my son’s diagnosis with a lifelong medical condition would not drive me up the wall. Or that, at least, I would handle it better than most people because I have been there before. But nothing could be further from the truth.
- Looking at how Issa does tasks — and he awes me many times — I have realised that children living with ASD are whiz kids. Issa will do wonders. I will bet my last Canadian dollar on it. The trick is to make him channel his genius to one purpose.
You all know that my five-year-old son, Israel (or Issa as we fondly call him), has autism spectrum disorder (ASD). I have told you how — before and even after his diagnosis — I wrestled with accepting that my baby was autistic.
Since I have lived with HIV for more than half of my life, many people would suppose that my son’s diagnosis with a lifelong medical condition would not drive me up the wall. Or that, at least, I would handle it better than most people because I have been there before. But nothing could be further from the truth.
I have said it countless times: nothing prepares you for such bombshells. It is an exercise in futility using a cookie-cutter to manage all medical conditions. What worked with Aids will fall flat on its face against ASD.
I am still learning. Issa is still showing me the ropes. But, so far, here are lessons I have learnt …
My son is God’s child
Some people refer to children who are abled differently as “special”. My son is just as human as any other child. I don’t give him — get ready for this — “special” treatment. Issa is not different: he merely processes data differently.
There are families who hide their kids with special needs. I won’t judge them. I don’t know where they are psychologically because an issue like this can mess you up. I don’t know if they ever receive support. I don’t know what’s been preached to them.
However, as far as I’m concerned, what the late Dr Martin Luther King Jr said applies to my son. I paraphrase: “Issa is God’s child. And he will not live like he’s forced to.” No. Not even over this woman’s dead body.
My son is productive
I am preparing Issa for a life on his own, which means he must have skills to handle future challenges.
Issa will not live with me all the days of his life. In due time, he will fly out of the nest. If he does not — and lots of boys with or without medical conditions never leave home — I will do what mother eagle does when it’s time for her chick to fly solo: teach Issa how to soar, even if he thinks I’m trying to hurt him.
Looking at how Issa does tasks — and he awes me many times — I have realised that children living with ASD are whiz kids. Issa will do wonders. I will bet my last Canadian dollar on it. The trick is to make him channel his genius to one purpose.
My son is not a punishment from God
I know that many people reason, erroneously and ignorantly, that when a mother is blessed with an autistic baby, it must be comeuppance from God.
See the word I used in the preceding sentence? “Blessed”. One definition of this word is, “bringing happiness and good luck”. And that’s exactly how I perceive Issa. He brings me happiness and good luck.
Blessings come in different packages. Once I stopped being fixated on the package — which did not seem to fit the normal happy-event convention of “bouncing baby boy” — I started savouring happiness and fortune that many mothers will never have.
My son is not here by accident
Accident: “an unplanned and unfortunate event that results in damage, injury or upset of some kind”; the way things happen without any planning, apparent cause or deliberate intent.”
The definitions above do not describe my Issa.
I believe that God was not napping when Issa was forming in my womb. My son’s condition did not catch the Almighty unawares. He knew what was going on, from conception to birth. He allowed this to happen.
Like Jeremiah 1:5 says, and allow me to personalise it, “Issa, before I formed thee in the womb, I knew thee.”
My son has a beautiful mind
Initially, when Issa insisted on always doing certain things the same way, I did not know what to make of it. I thought it was a phase, a developmental milestone. I thought he would outgrow this phase.
When professionals put me in the know, explaining to me how Issa’s brain functioned, I realised that my son had a beautiful mind. I grew up and stopped stressing myself about him growing up. Sure, it took time and patience, but over time, I stopped fussing about Issa’s fastidiousness — which all mothers with autistic children do — and started seeing these traits as learning opportunities.
I know this for a fact: my son is brainy.
