Having an autistic child
In the spirit of World Autism Day today, Thabo Leshilo talks about life with an autistic child.
Having an autistic child is not easy and is bound to change you – forever. For me the biggest challenge with raising an autistic child is in fighting the temptation to try to make him “normal” – by imposing your own idea of normality on the child.
It doesn’t work and the sooner one weans oneself off this, the better – for yourself, your family and, especially, the child. I had to accept early on that my son, Ofentse, who was diagnosed with low-functioning autism at 18 months, was different from his two siblings and would never, ever conform to the straight jacket of what passes for our idea of normality.
Admittedly, that’s easier said than done. No parent wants to accept that his or her child is not going to be an Albert Einstein, or dazzle the world with his sporting prowess or achieve anything that will win him or her the admiration of the world.
So, I learnt early on to moderate my expectations of him and let the child blossom within the confines of his limited ability, and celebrate every little milestone he reaches. What is important is that the child is happy. But, my judgment does sometimes get the better of me, making me forget this simple principle I had long made peace with – that my normality and that of Ofentse, now 17, are two different things. That they will seldom meet and will, at worst, collide, with unpleasant consequences.
For example, it is “normal” that your children should open the driveway gate for you when you come home. The younger ones, in particular, relish the opportunity to do this as it provides affirmation of the ability to do something useful.
Simple logic provides that Ofentse should also be able to do that but he couldn’t. So I, in my wisdom, thought he should. After all, he should lead as normal a life as possible, shouldn’t he? His disability should not be an impediment to his living a “normal” life, right?
With this in mind, and seeing that he is often the one who can be found playing in the yard, near the gate, I thought it would be a great idea to show him how to release the gate padlock, which was often left unlocked whenever we were home. It worked. He would sometimes remove the padlock, open the gate, let me drive in and duly close the gate afterwards.
This happened a few times without a hassle. Thus, Ofentse’s ability to open the gate joined the list of other useful skills he had learnt. He was not, after all, as useless as one medical doctor once told his mother, Mapeu, he would always be. Take that Dr Pillay!
Then one Sunday, while I enjoyed an afternoon chat with his mother in the lounge, we got a call from his elder sister, Onthatile, who was visiting my parents in Soweto, about 30 kilometres from our home in Berario. Her friend from down the street had phoned her to tell her that our gate was wide open, asking if Ofentse was safe. Onthatile called us promptly, wondering what was going on. We went to investigate just as quickly.
The gate was indeed wide open and Ofentse and our four dogs were gone. A glance of the streets yielded nothing, leading to a frantic search around the block on foot, to no avail.
Rosie, the mixed Labrador that has no relationship with anybody else in our family but Ofentse, and seems to have dedicated its life to following him around, guarding him like a hawkish body guard, came back home alone. The dejected look on its face said it all: “Ofentse is gone. I tried to stop him and bring him back home safely, but I failed. You caused this. You go and find him,” Rosie appeared to be saying.
Déjà vu!
The lighting had struck a second time. Thoughts of him going missing for two days all those years back in 2006 came flooding back – the anxiety, the sleepless nights, the searching in vain, the fear from knowing the terrible things that can happen to a child, were overwhelming.
Then, Ofentse was six years old when he went missing. He was found almost two nights later, under the storm water drainage system, meters below earth and houses, a mere 500 metres away from home.
The police diver who found him almost died of hypothermia. All my child’s clothes were gone, but for his jockey underwear and takkies. He was famished, wet and shivering with cold.
This time around, the story had a much easier ending. Ofentse was eventually found outside a shop not too far from home, happily munching away at a packet of chips.
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