Monday, September 23, 2013

Why was I inspired to do this?! How Autism Spectrum Disorder came into our lives. Part One.

I am frequently being asked why I was inspired to do this.  So let me tell you our story.

My son, who has given me permission to talk about this, was born, a perfect, blonde haired, blue eyed, baby in April of 1996.  He was so gorgeous and so snuggly, and we just adored every thing he did. Maternity Leave was hands down my favourite part of my career.

He hit milestones normally.  crawling backwards and then forward at five months, first word at 9 months (Cat!) and first sentence at 18 months.  He was not particularly conversational but he always seemed to be able to convey his needs and wants to us.  Looking back, I remember going to City Line (the TV show ) when he was 4 months old and having to sit in the green room for the whole show because every time they audience clapped, the baby screamed like crazy, but at the time, it didn't mean much but that he was sensitive to noise.  It was the only thing when he was a baby, looking back ,that seemed like a hint of what was to come.

When he was about 2 .5, someone commented to me that he did not speak much.  I didn't think much of it but did sort of file it away.

When he was 2 3/4 we had a confluence of events that convinced us to pursue whether there was anything going on developmentally with him.  We went to Doctor after Doctor and got some seriously weird answers and feedback.  My own childhood Pediatrician was the only one who saw what I was talking about and since at age 90, he wasn't fully practicing any more, he sent me to his partner who told me to come back when he was six, because it was clear he had adhd and that I had poor impulse control, thus must be a bad mother with no discipline.  He actually told me to start spanking my son!  In the mean time, I viewed discipline, not as punishment but as the boundaries  and framework in which we live, and was not in any way, shape or form, lax about behaviour.  Frustrated sometimes, when it seemed like what I was doing wasn't working, but never lax.

Eventually we were referred to McMaster's Child and Family service.  I remember the screening call, where they kept asking me questions and I kept saying, 'yes he does that but I know something is up here.'  I was afraid that they would not let me have an appointment for diagnosis if they thought he was totally developmentally on schedule.

Two weeks before I was due with my second child, we went to Chedoke and had a visit that lasted two hours with a leading developmental pediatrician, Dr, Zwaigenbaum.  The Doctor was very clear that our son had a definitive diagnosis of Autism Spectrum Disorder - Not otherwise specified.  It was not all out Autism, it was not Aspbergers, it was ASD-NOS.  He was 3 years and 4 months old.

I was so thrown- hormonal no doubt too- I was numb.  My 'perfect' baby was wired differently than we expected.  everything was so up in the air.  Would he have a future?  Would he get married?  Would he be able to go to post secondary school and support himself as an adult?

Those were black days, no doubt made much worse by my impending birth.  I was so numb, I could not think straight.

Thankfully, Chedoke had some support for parents in the form of lectures and workshops.  We were connected with a speech pathologist and a behaviour therapist, ot, pt etc.  I tried to swallow my numbness  by learning what I needed to know, and thankfully, taking action helped.

To be continued.....

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