It began with Luke’s “opening/awakening”. I had shown him Elizabeth Bonker’s valedictorian address as a non-speaking speller—a graduate from Rollins College in Florida. Elizabeth had been spelling on a letterboard since she was young, and her college accomplishment was an inspiration for all spellers worldwide. She is a leader, a trailblazer, and Luke just had to meet her! One of his first requests was, “I WANT TO MEET ELIZABETH BONKER. SHE IS AN INSPIRATION.”
Motormorphosis is a conference held by / with / for spellers, CRPs, and friends of the letterboard. It is an annual event created by https://i-asc.org/, with the renowned Elizabeth Vosseller and her amazing team at Growing Kids Therapy Centre as the hosts. I knew we had to go. Luke had to go. Luke had to see what the possibilities of his life could really be; that his hopes and dreams could be achieved. He was excited to be “IMMERSED BY MY PEERS”... peers who were “just like him” and were pursuing successful careers; romantic relationships; living independently; and advocating.
So we bought the tickets to Virginia—expensive, but when we reviewed the 19 years of never knowing what to buy for Luke, it was a no-brainer to budget for this request. Gratefully, after research and medical paperwork, Air Canada reimbursed fifty percent of the “support person” ticket; and the hotel offered a conference rate that was fair, despite the Cdn/US currency exchange.
I’m a planner so all things were in place by February 2024 for the conference in July. It was a good thing that we booked early because it was a sold out event, with 143 non-speaking spellers in attendance from all over the world (mostly the US, but there was a growing contingent from Canada, and a few people from Ireland, England, Australia, New Zealand, and South Africa).
Luke and I were super anxious—we tend to feed off each other’s emotions. In the Vancouver airport Luke was randomly selected for the “extra” security check which included a pat down. Luke complied despite the heightened stress, and we were through security fairly quickly. Both 5.5 hour flights were nicely uneventful. Snacks and movies helped.
Motormorphosis exceeded our expectations. Our intentions were to be “observers” … watching, learning, absorbing, and we settled into the very back corner of the main presentation hall, with a great view of all the events and presentations. We definitely enjoyed every minute. The theme was “Silence is Not an Option”... so apropos for this bustling, advocating, and brilliant crowd.
I’m not quite sure I can do justice to the vibe. All I kept thinking was this was unlike any other conference I had attended. Imagine a room filled with autistics who had little motor control and exhibited a wide range of dysregulation. There was clapping, jumping, sounds, hums, running, and more. Every typical distraction that would get a glare in any other “quiet” conference situation, was not just simply tolerated—it was embraced. If you want to experience the most profound example of inclusion, this is it. It still brings tears to my eyes as I write this. All the presentations endured sound issues, technical difficulties, and many lengthy pauses that would make the average person uncomfortable. This audience, however, was comprised of the most patient and gracious people in the world. We were all genuinely happy to be there, spellers, parents, CRPs, professionals—listening intently to the amazing variety of wisdom, advice, research, power, poems, and more. It was epic. I am not too proud to say that I welled up many times throughout the weekend.
It was wow.
There were breakout sessions too, in smaller rooms—many packed—all with relevant topics such as travel, eating, independent living supports, advocacy, sex/love/relationships. There were research presentations, and “speed” socials (for making new friends!).
And in the foyer were booths to visit... just to mention a few:
All Minds Academy (Jen Leon!)
Nikolas and his 3 detective children’s books! and his dad, Andrew, a letterboard app designer (fellow Canadians)
Blankets by Brent and his crocheted blankets that were sold out pretty quickly!
Caden and his mom Jen with their tie-dye t-shirts (yes, we bought Luke an orange/blue one!) Spellbinding Creations
Author Aaron Jepson with his novel “I Never Get Lost in the Woods”
and many more…
And of course, the Communication 4 All booth, with Elizabeth Bonker and her mom Ginny! We were gobsmacked, and giddy. Luke was excitedly and anxiously distracting, but I was able to have a wonderful conversation with these amazing ladies. They are on a mission to make spelling as accessible and affordable as possible—even designing FREE cardboard letterboards, along with their already free “How to Videos” available online (Communication 4 All Academy). Truly beautiful people. I felt immediately connected to them. We were able to take a photo of Luke and Elizabeth, and Luke was later able to spell this conversation with Madison:
M: Who was your favourite celebrity? L: Guess! M: Elizabeth Bonker L: Yes!!!
There were other “celebrities” we were able to take a photo with. Luke is an introvert (like his dad), and I am a bit socially awkward in large groups, so it was a stretch for us to engage with people. I was, however, able to track down and get photos of Danny Whitty, renowned blog / podcaster and an event panelist. We also found Ben, Matthew, Patrick, and our research peeps: Dr. Vikram Jaswal, and Dr. Diwakar Krisnamurthy! The only regret was not meeting Gregory Tino face-to-face, but we saw him from afar. Super cool. [Remember the blog post I wrote a while ago about “Not Alone”... we met most of these guys!!!!]
One of the weekend highlights was Luke’s 20th birthday on Friday, July 26. Such a perfect way to celebrate bringing in the twenties!! What also made it an epic day was the fact that Luke participated in two research studies. One involved the Quest 3 virtual headset and exposed Luke to 3 environments: AR (augmented reality—the hotel room was visible); MR (mixed reality—the room was visible but had virtual elements of trees and grass); and VR (virtual reality—in a forest, but people were visible). Luke had to work with blocks and letters to spell words… grabbing the blocks from one area to another. The intent of this was to see what reality the autistic participants preferred. The goal is to eventually create a virtual CRP (Communication Regulation Partner). For example, Madison could be in Calgary, and we would be in Kamloops, and they could virtually connect and spell through the Quest 3 devices.
The other research project was to monitor the stress levels of the speller. Luke was shown how to do a quick game (point to the flashing symbol—aka “Whack-a-Mole”). He and I had heart monitors fastened to our left chest, so they were monitoring our stress levels. Luke had to play a) alone; b) with a stranger; and c) with me, his mom. We won’t know the results (was he more regulated with me?) for a while. We were happy to be a part of the experiment.
On the night of the 26th, there was poetry reading and a dance party!!! Luke did not want to dance, but it was fun to be on the periphery and hear all the speller’s poems, and then watch them jam on the dance floor. What a blast to watch them all get their groove on.
So, a busy weekend, but super fun.
Here are just a couple of Luke’s reactions:
I THINK IT WAS ONE OF THE BEST WEEKENDS OF MY LIFE.
IT WAS A LOT GOING ON.
I WAS PROUD OF MY PEERS.
HOW DO I BECOME A PANELIST?
I’D GO AGAIN.
I did ask how Luke—who feels everyone’s feelings intensely, reads auras, and hears better than a whale—handled the crowd. He spelled “I’M LEARNING TO CLOSE A DOOR TO PROTECT MY ENERGY.”
He wrote this poem, which I believe is a beautiful way to sum up our amazing weekend…
Immersed in a sea of bodies
Loud ones.
Busy ones.
Sensitive ones.
I play the role of observer.
A role I have practiced for twenty years.
But this weekend is different.
I am an observer by choice.
Surrounded by celebrity peers.
Some even recognize me.
It’s a speller’s world.
Silence is not an option.
—Luke Verhoeff, July 31, 2024
It feels like this might become an annual event!