Let’s start at the beginning

In hindsight, it seems like we always knew Ryan was different. From the time he was an infant, and turned his face to listen to ‘You are my Sunshine’ we knew he was special, truly unique. But aren’t all of our babies?

We marveled at his early love of music. We were proud of his gentleness with other children and his grasp of language at a very early age. We crowed about how books were his favourite toy and we laughed at how he always had some small ‘special thing’ in his hand. In short, we had a brilliant little boy and we couldn’t have been happier.

This is one of the first books we read when we were trying to figure things out.

There were other signs too, but as a first-time parent, we weren’t worried. Sure, Ryan loved watching the wheels on his stroller spin. Yes, he wasn’t as interested in toys as his other friends, but he was meeting and, in some cases exceeding, his milestones and the rest was just idle worry.

That changed once Ryan started preschool. He struggled with routines that most of his peers loved – circle time, snack time, arts and crafts. We thought he might be bored. By this time he was an avid reader with a wide variety of interests. Once we went to the Art Gallery of Nova Scotia to see an exhibit about Egypt and the tour guide was so impressed with his knowledge (How many five-year-olds ask “Are those canopic jars?”) that he gave him his own guided tour. I tagged along behind them, picking up all the info I could.

We tried to understand Ryan’s school challenges as best we could. How could a boy who knew so much, struggle with something so easy? We did some research and even considered Asperger’s but the explanations we read didn’t sound like our Ryan – he wasn’t obsessed with trains or cars, he didn’t crumple when routines changed, his motor skills were strong. And he definitely wasn’t remote. If anything he was extremely emotional. It didn’t fit the narrow profile we had of Autism Spectrum Disorders.

Eventually we sought the help of a respected and beloved psychologist in our neighbourhood. We wanted to make sure we had as much information as possible before Ryan started school.

The first thing we learned was that Ryan was extraordinarily gifted in the area of language. It took another year and a difficult first year of school to get the Asperger’s diagnosis.

The first book we read after the diagnosis was the OASIS guide. It was a big fat book, the kind I used to use to squash spiders when I was a kid. I loved that it was written by another Mom looking for answers.

I searched for ‘my Ryan’ in every page. I saw glimpses of him in some stories and not at all in others, but I gradually saw that Asperger’s like any other syndrome affects each child differently. All of a sudden the black and white characteristics I’d read about in the DSM, began to broaden and I could see nuances and that hadn’t appeared the first 10 times around.

If we had to pick some lessons from that early time in our journey they would be:

  1. Listen to your instincts as a parent. If you think there’s a problem follow up and learn what you can.
  2. Diagnosis is a journey, not a destination. It took us several years of of reading, assessments, meetings and ongoing experience to finally reach a diagnosis that made sense.
  3. Labels aren’t as scary as not knowing. The Asperger’s diagnosis didn’t pigeonhole Ryan in our eyes, it only gave us the tools we needed to advocate for him more effectively.

Tell us the story about the beginning of your journey. We’d love to hear from you!

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