I didn’t know any better

My son’s name is Joaquin, his name meaning “God will determine”. For many years, I believed that motherhood was not in the cards but in 2008, I happily discovered that I was pregnant. My pregnancy was perfect in every way and I was given my son as a gift and for a purpose I never imagined.

At 4 weeks, Joaquin had surgery for pyloric stenosis, an abnormality of the lower stomach muscle that caused him to reject all oral feed. At 2 years of age, he had eye surgery to correct a squint, without which, his vision would have been severely affected. I thought that was enough, but God already had a predetermined plan.

In 2013, at 5 years of age, he was refused admission to several primary level schools. The explanations were vague and I was completely stunned. These schools were saying he wasn’t ready. But this was the same child who was talking in full sentences at 14 months, knew his alphabet at 16 months and could count to 20 by 18 months. What exactly did they expect from him?

On our 11th attempt at a primary school, a single question changed our lives. “Has anyone ever suggested to you that your son may be autistic?”

I was devastated. I considered myself to be reasonably educated, but I knew nothing about autism. I ignorantly thought that anyone with autism was below average intelligence and unable to speak. So why was someone now suggesting that he was autistic? What were they seeing that I was missing?

And slowly the signs emerged. The little things that I thought were quirks were the glaring signs that had been right in front of me. But I simply didn’t know any better.

  1. Joaquin very rarely made eye contact. But I thought this was as a result of his eye surgery.
  2. He always hated people in his personal space. Hugs were always a very rare occurence and often reserved for the most loved people in his life.
  3. His need for routine… when he woke up on a morning, he would take 15 minutes to watch cartoons, then he would use the washroom and brush his teeth. He had 2 toothbrushes: a spiderman toothbrush and an ironman toothbrush, and they had to be alternated every day. Then breakfast and dressing for school. Whenever something happened to disrupt the pattern, his behaviour would descend into madness. The worst crying and screaming! I thought he was being rebellious. It never occurred to me that it was something more.
  4. Three straight years of hearing about nothing other than Lightning Mc Queen. Gift buying was easy so I never questioned anything.
  5. Toy cars in line… and don’t you dare take one out of sequence! Refer to the latter portion of point #3 – crying and screaming!

For over a year, I blamed myself. Obviously if I was a better mother, I would’ve known. But the reality was that I didn’t know any better. I didn’t know a single autistic person and at that point, I don’t think I had even interacted with one.

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To the mom or dad reading this and you’ve just gotten your little one’s diagnosis, and you’re wondering as I did if you’re at fault. The answer is NO! If you’re confused and overwhelmed by the deluge of information out there, know that this is not an illness or a disease. It’s simply a different way of processing. And in time, things will start to make more sense. Know that there will be good days, and not so good days, but there is a community of us who understand and will always support you and encourage you.

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