You’ll Know Where to Find Me in Fall 2012

On November 3rd through 5th this fall, the Toronto-based Geneva Centre for Autism hosted it’s biannual symposium on autism. It was held at the Metro Toronto Convention Centre, and attended by over 1600 delegates, presenters and experts from all over the world.

Including, for the first time, me.

As the first day is mostly for professionals, the bulk of the conference unfolds over two days. It starts at 8 or 8:30 in the morning, and the last session of the day ends at 5:00. The breaks between sessions are just long enough to find your next room, use the loo, and buy a bottle of water. At the end of the two days, I had spent more than 8 hours in sessions, and taken 50 pages of single-spaced notes on binder paper. 50. Pages.

Not a single word was extraneous.

In short, it was extraordinary. It was overwhelming, and exciting and humbling and intense. Throughout the two days, an almost palpable sense of urgency and connection permeated the speaking halls and common areas. The majority of the delegates. Parents of kids on the spectrum from high-functioning and verbal, like Finn, to those struggling with non-communicative children who aren’t speaking at kindergarten age or higher. There were whole delegations of teachers, occupational and speech therapists, psychologists, and other professionals who work with these kids, and everyone – all nearly 2000 of us, were so desperate to learn, to share what little we know, or how much we know, that you could almost see sparkling currents of electricity flashing from head to head to head.

I will write so much more about this, I promise. But at this point, I’m still trying find my feet again. Processing all the information, all the mind-stretching new perspectives and fire-under-the-bum-lighting strategies feels nearly impossible still. It feels like trying to find a lone dime in a bucket full to the brim of pennies and nickels and quarters and not being able to dump it out to look. Head. Too. Full.

Choosing which session was excruciating: “What if I miss something REALLY IMPORTANT?” Originally I reconciled my difficulty by telling myself I could always stay for part of one session, then leave and deke into a concurrent one to get a little of both. The fact is, I’d be surprised if anyone at the whole conference did that; each session I went to was so riveting, I couldn’t have pulled myself away if there’d been a fire alarm.

Those of us who were there for our own children naturally approached each speaker, each session from the perspective of that child, with his or her specific strengths and needs. And, naturally, I thought often of Finn, who was diagnosed with Asperger’s syndrome when he was seven. But I also thought – tremendously – of Rory.

Rory doesn’t have an autism diagnosis per se, but I’m sure not ruling it out. And regardless of whether or not he meets exacting guidelines for a specific diagnosis, he suffers from many of the challenges of children on the spectrum, from overwhelming sensory processing difficulties, to many of the same issues with social dynamics and change. And I thought of him constantly.

I actually laughed out loud when I first walked into the exhibitors’ hall: several companies who sell sensory tools and toys had set up big colourful displays of their wares: squeeze balls and fidget toys, weighted bean bag animals and stretchy bands, squishy clay and soft blocks. I laughed, because in a nutshell, those are the only things Rory plays with. He carries a bright yellow tool box to school every day FULL of just those things. I recognized his world all around me.

Friday evening I made my way to the subway, for home. It was already dark, and I was laden down with stuff: my book bag, purse, an umbrella, a large wooden box containing an art game for Rory, and oh yeah, a shiny five-pound stuffed lizard, who utterly resisted being forced down into the small-ish bag I’d taken from the conference. I took the skywalk to Union Station, subway to Queen, and wedge myself into an east-bound streetcar, along with everyone else and their Aunt Maude. (It was 5:30 on a Friday, after all). The streetcar shook, and I stared at the painted-on eyes of the blue gecko, and tried to calm my stomach, which was rolling. But three stops short of my block, I had to get off. My head was swimming, my hands were shaking… I tucked into Starbucks, ordered a lemonade with extra ice, and sat in the darkened window for a few minutes. Breathe, I thought, just breathe. But all I could think was of the words and the voices of the people I’d spent the past two days with. It was like I’d been immersed in a parallel world where children like mine were understood and thought beautiful, and I was being torn out of it, back to earth. Snippets of the sessions fought in my mind for space, swirling and pressing up against my eyes and the back of my throat. And before long the tears were flowing (again).

Finally, I gathered my bags, my box, and my lizard, of whom I have to say I now felt distinctly fond, and walked home in the dark, teeth chattering the whole way. Over the next hour, I was in the bathroom three times (forgive the bluntness).

I was overwhelmed, and am still. But in the best, the most rare, precious way. I came away feeling, for the first time in I don’t know how long, energized and positive, and even excited. Sure, I had to restrain myself this morning from busting down the door to the principal’s office at Rory’s school and renovating the way the entire educational system is run, but y’know, one thing at a time.

For now, I’m waiting for the delivery of a book I ordered first thing Saturday morning. It’s a book for kids on how to draw, and I got it for Rory, who loves art more than anything, but is also a crazy perfectionist, and hardly draws anymore, because he thinks he can’t. I got the name of the book from a fantastic woman who is a speech and language therapist to kids on the spectrum, and who sees kids like Rory all the time. I can’t wait to show it to him.

And that’s really it – she was just one person amid 1600, but we got to talking, and she KNEW WHAT I MEANT. She knows kids like Rory, she gets them, and she values them, and so does every other person who was there over those two days. More than anything, that’s what blew me away. I expected to leave the conference enthusiastic about ideas, even armed with a few new strategies. But I never expected to come away feeling honoured. Honoured to be among such remarkable human beings, and mostly, honoured to be the mother of such remarkable children.

The next Geneva Centre Symposium on Autism is in Fall 2012… No question, you’ll know where to find me.

3 comments to You’ll Know Where to Find Me in Fall 2012

  • Hi Regan

    You are unbelievable!! What a wonderful Mom (& Dad) those 3 children have. I love you. Can’t wait to see you on Sunday.

  • Cara

    So, as you know, I felt the same way. But when I read your description:
    “My head was swimming, my hands were shaking… It was like I’d been immersed in a parallel world… … Snippets of the sessions fought in my mind for space, swirling and pressing up against my eyes and the back of my throat.”… and the thing about trying to find the dime without dumping the bucket out to properly SEE.
    … it wasn’t ME I thought of. Instead, I wondered if that’s what Jake’s experience of “being in the world” is like, all the time?
    Food for thought.

  • ola

    What is the name of this wonderful book for drawing?

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