As the dust settles on our one-year anniversary of Luke openly communicating through his practitioners, Madison (Calgary) and Brittney (Kamloops), we are finding a new and empowering life for Luke. And when I mean we, I mean he—Luke is involved in all the decisions, as he should be.
So, a recap of Fall 2024 and all the happenings:
Calgary Sessions
We spent a quick 4 days in Calgary in late October, enjoying time with “Speller” friends: new friend Finn and his parents Dan and Andrea (Finn’s first chat with another Speller); a quick catch-up and lunch at Denny’s with Eric the Red and his mom, Mo; and a delicious dinner/dessert with Geoff and his mom Sarah at their house.
Most of Luke’s spelling sessions with Madison that week were focused on his short story about Charlie, the nonspeaking detective… it was fun to watch the story unravel and evolve. Madison and I quickly learned to shut up while Luke was “talking” and stop theorizing on the “whodunit”, lol. It’s been enlightening to learn the “etiquette” of communicating with Spellers. Luke does not appreciate it if we try to guess out loud what we “think” he’s going to say while he’s spelling. It is considered rude, and although that is never our intent (we are just SO excited), we have to stop the urge to be “predictive text”. We now tell anyone who has their first conversation with Luke about this “housekeeping” rule. It’s just polite.
Ethereal / Documentary
The Ethereal team at the Schulich School of Engineering / University of Calgary had presented their eye-gazing research—supporting assistive technology for nonspeaking autistics—in Europe this past summer. Jaws were dropping in Europe over their findings that nonspeaking autistics were “in-there”, smart, and just needed the right supports and technology to communicate their thoughts, hopes, and dreams.
Reading research papers for most can be a bit tough, lol, so Ethereal decided to put together an 8–10 minute documentary entitled “Everyone Deserves a Voice, a Private Voice”.
One of our days in Calgary was dedicated to Lorans Alabood, Ph.D. who is not only a post-doc researcher of assistive technologies, he’s also a filmmaker! He owns the most bleeding edge Cannon camera equipment and gimbal (got to see the new camera and lenses designs by Cannon!). I’m a graphic designer and have often coordinated video and photo shoots, always “directing,” behind-the-camera. This time it was SO weird to have the camera on me, and Luke. But it was fun! Luke and I spent the morning, Thursday October 24—a super sunny but crisply cool day—walking the U of Calgary campus while Lorans filmed us… together, hand-in-hand, and Luke on his own. Luke’s long hair was a stunning feature, as it glowed in the sun, lol. This was the “B-roll” which also included a quick tour of some areas of campus. The University of Calgary is a gorgeous campus. We were able to do a little more filming in the library, eye glass store (yes, on campus!), and while grabbing a coffee. Then we headed to Madison’s office for the audio portion of the film. Luke, Madison, and I answered questions about what it means to have a “private voice”. We hope Luke will one day be able to talk on his own, without a communication partner, assisted only by a virtual app/keyboard through a HoloLens/HoloBoard or Metaquest virtual headset. We are getting closer to the App being available, sometime next spring!
In the afternoon, Lorans took us to a beautiful viewpoint in Calgary. He continued to film us and took some photos of Luke with the stunning backdrop of the city skyline and the mountains in the distance. It was so great to be part of such a groundbreaking documentary. The premiere will be launched on December 15 at an event hosted by the U of Calgary. Everyone who is interested is invited to come (Free event, but an RSVP required—click here). Luke and I have booked our flights and look forward to seeing ourselves on-screen (sort of, lol).
Anytime this research team calls, we make ourselves available. We are so grateful for the inroads they are making—anything we can do to support the research and science that makes people realize autistic non/minimal/unreliable speakers are intelligent and competent. Special thanks to the amazing brilliance and forward-thinking science of Dr. Diwakar Krisnamurthy (University of Calgary) and Dr. Vikram Jaswal (University of Virginia), as well as the Ethereal team.
Vocal Vista
Brittney Ritchie is our local person! She has completed the certification and is now officially an S2C (Spelling 2 Communicate) Communication Regulation Partner/Practitioner (CRP). She has been working with Luke since March, and is now fluently open with him. She has opened up her own business as a CRP, called Vocal Vista, and is slowly taking on new clients. She is also continuing in her role as Manager of Smart Options, an employment coaching company for people with diverse abilities. She’s definitely a keeper! We are thrilled to be able to continue working with her and having someone local—she has become a part of our family, just like Madison. Brittney offered her space at Smart Options in early November for Madison to host a workshop, and we had two new clients come from Salmon Arm and Kelowna. As Madison and her 7 years of experience worked with these new “Spellers”, Brittney watched and learned. Brittney has also recently become “open” with another local Kamloops client, and their family is going through all the feels of learning their loved son is “in there” and can now communicate with them. One at a time, we will overcome the roadblocks, and we will continue to add “Spellers” to the #spellersrevolution.
Hopenstone
Hopenstone is the name of my book that I’ve been working on, well, for 20 years. I started a blog when Luke was 3.5 years old (and stopped when he was 14). This past spring I had a writing weekend, and organized our journey into chapters: from infertility to spelling. The best part was in early September, we had a writing retreat in Revelstoke with Luke and Madison, and Luke was able to add his brief take to the end of each chapter in his own spelling words. It was an amazing and cathartic collaboration. I enjoyed a third writing retreat of editing, finalizing, finessing, and working on the cover design. Soon I will self-publish to Amazon. I’ll be promoting it as soon as it’s available.
Group of friends from School
Luke had an opportunity to talk to a group of friends (in Joel’s class) that he’s known for years. One of them he’s known since Kindergarten. It was great to connect with these guys for the first conversation ever, and they were gracious and funny and kind. It was a beautiful hour, despite Luke being a bit anxious and overwhelmed. Check the graphics below to get the gist of their conversation (hint: Girls / Driving / Fortnite / Merch / Angry birds). Thanks guys for not being too annoying, lol.
Chef / restaurants
Luke’s passion for cooking continues… he watches cooking shows any chance he can. He’s almost exhausted all the streaming channels, and yet we continue to find more to sate his appetite. We hired a local chef, Danielle, to see if he would be able to carry his passion into the kitchen. Coping with an apraxic body makes cooking a bit of a challenge, coupled with Luke’s anxieties around hurting himself, and his hyperesthesia (super sensitive skin). We started with our take on the “Good for your Soul” Power Bowl from the Great Canadian Brewhouse menu. It was “better” than the restaurant, according to Luke! The second meal was Gordon Ramsay burgers, and they were delish! I loved watching people (other than me) support Luke in our kitchen: Brittney as his communication person, and Danielle guiding him through all the cooking steps.
A lot of Luke’s time with his support people—Rodney, Chris, and Dion—is spent trying different foods around town. Luke loves to check out gluten and dairy free options in all the local restaurants. I often joke that he’s a GFDF food critic, as we ask him what he liked and disliked around town. Top restaurants so far are The Art We Are (always a favourite), Red Beard, and Heaven. Luke has also always a big fan of Mexican food… chips and salsa is a staple for him. We’ve been taking him to Senor Froggy’s for years!
Thompson Rivers University
We’ve finally started Luke’s English 1001 Thompson Rivers University course! A majority of our Spellers have not been exposed to a “real” education; often having to endure Life Skills and remedial studies year after year. Luke craves a traditional education. At first we thought he should take high school courses, but soon realized he might be ready for post-secondary (he often learned through the walls in high school). For Open Learning (studying online) at TRU, a Dogwood Diploma is not needed (Luke has an Evergreen Diploma—based on a modified education). So we thought, let’s just give it a go. We spent some time this summer laying the groundwork, starting with a visit with the Accessibilities department at TRU. This method of communication had never been seen or heard of before in our small town of Kamloops, so we’re blazing a trail. Luke was justifiably frustrated when faced with skepticism and concerns about “academic integrity”—because of Luke’s need for a communication partner in order to take exams. “I shouldn’t have to prove my voice is mine.” But we’ve come a long way since, thanks to Luke’s dad providing a list of universities in the US that have made accommodations for Spellers. Over the last while we were thrilled to move forward as more and more allowances for Luke’s learning were created. TRU is very on board with paving a way for Luke to be successful. They are hand selecting the best professors, and giving guidance on the ideal courses for him. We started the course mid November and are slowly and gently moving through the material. It will take time, patience, and understanding, but we hope and pray for success. Special thanks to Brittney of Vocal Vista for taking Luke on a tour of the TRU campus! He loved it!
… and that’s the Fall Update! Whew! Thanks for continuing to follow Luke’s journey!