Stephanie O Custom Photography » Calgary Maternity & Newborn Photographer

Week before last we went on our annual family vacation to the beatiful Qualicum Beach on Vancouver Island. Well, this was our second year, but we’re already ready to book for next year, so that will make it annual, right?

Anyways, we love it there. So much so that last year during our trip we  had all but decided to pack up and leave Calgary permanently.

But our lives changed last July & August, and suddenly, moving to BC was out of the picture. Or rather, our lives didn’t change, but our understanding of our lives really did.

You see,  from the time Noel (my son) was around 18 months old, I’d always had a sense that he was… different, in some way. And after nearly two years, we finally got confirmation of that difference – Noel has Asperger’s Syndrome, an autism spectrum disorder characterized by social difficulties, and repetitive and restricted interests and behaviours. Unlike other autism related disorders, Noel’s language skills are off the charts, and have been since he was 11 months old.

I’ve struggled for awhile about what I wanted to write, if anything, about Noel and the struggles we have faced as a family over this past year, and continue to face on a daily basis. For a while, I really needed to keep it to myself, and then for a while, I really wanted to whine about it, but now I’ve reached a certain state of balance, where I think it’s very important to share, not only because I want this blog, though it’s related to my business, to be somewhere people can come to get to know me, and also because I want other moms in the same boat as me to know they are not alone. I’ve been writing monthly at Hopeful Parents about our experiences with autism, and would like to start writing more here.

The trip we took really cemented for me that it was time to open up. We had a wonderful vacation. Really beautiful. I had that same longing to live there that I’d had last year, and then a very plain sadness over the fact that moving to BC is not in the cards for us right now. British Columbia has poor funding for autism intervention and services, half what Alberta spends. So, though my dreams are living beachside, my head understands the best place for Noel is here.

The vacation was excellent, but it was different from last year. It’s  funny – last year, Noel was the same child child with the same disorder, but he was also only 3.5 and much of his behaviour could be explained away due to his age. Three year olds have temper tantrums. They have bathroom difficulties. It’s all par for the course.

But now Noel is 4.5. And we are now keenly aware of the staring, whispers and harsh comments of strangers around us when Noel is having a hard time. And some of the activities we chose to do as a family were, unexpectedly, maybe not the best choices for Noel, who sometimes has trouble with loud noises (Parrot Refuge was a BAD idea),visual overload (that gorgeous dappled light in the Cathedral Grove? BAD idea), and the disruption of his routines (sometimes so unavoidable while on vacation, although we did manage to maintain some of them).

So what motivated this post? The staring, whispers and harsh comments mentioned above. Noel has an invisible disability. While he looks and for the most part, acts, like a completely average child, he is not average. And he is not having a temper tantrum. He is having an emotional meltdown, a panic attack. He has completely lost control. It won’t help if we take him to the car to calm down (unless we are removing him from something overwhelming). It won’t help if we’re stricter. It won’t help if we pretend to say goodbye and leave him behind.

I have faith that most people who are finding this post are not the type to stare, laugh, or judge another parent who is having a hard time in public, but awareness is key. And I have been far from innocent in the past. But maybe you know someone who might do that. Maybe you know someone who isn’t aware of Asperger’s, or maybe you yourself weren’t aware. Autism has many faces, and it is expressed in so many varied ways. It’s not what I thought it was – headbanging, hand-flapping wordlessness. My son speaks in full, clearly articulated sentences, sometimes with wisdom that will take your breath away. Sometimes he repeats the same word or noise or sentence 1000 times, and cannot stop. I think that we can all benefit from taking a moment to remember that many people’s struggles are not outwardly visible, though they are still there.

I look forward to sharing more about Noel. We’ve got some really exciting stuff in the works for our family. And I promise, as always, to continue sharing the sessions I’m so lucky to have with the gorgeous families I work with.

For now, have a taste of our vacation photos.

Cheers!