Our son Tommy runs fast. So fast he was selected as a Paralympic Tokyo 2020 hopeful, and represented Canada at the World Para Athletic Championships 2017!
Twenty-seven-year-old Tommy is a proud, happy autistic runner, Disney enthusiast and YouTube personality! His hometown running and road racing community warmly embraces him. He trains with the Ottawa Lions Track Club where he has friends who share his love of running. He’s also part of a thriving online community of Disney fans, and those who share a bond in Autism.
But Tommy’s story is also one of seemingly insurmountable challenges, hard work and determination, and many people dedicated to supporting him along the way. Tommy’s autism has always been, and continues to be very challenging, requiring one-to-one support in all areas.
Tommy was born to move. He walked at 8 months, climbed everything, and slept only three hours a night until age seven. Personal safety has always been a great concern: he struggles with severe Obsessive Compulsive Disorder, anxiety, meltdowns and self injury, hyperactivity and elopement. To help keep him safe, he’s had a working Autism service dog since age seven. His current Autism Assistance Dog Guide, Adel, trained by the Lions Foundation, is always by his side.
Communication has also been a struggle for Tommy, who remained non-verbal at age five, when professionals said he might never speak. With help from picture exchange, computer programs, Disney movies, and many other kinds of therapy, Tommy began to type words at age six on the computer even before beginning to speak a few single words at about age seven. Reading subtitles in Disney movies helped him very gradually became more verbal over many years.
Supporting his communication was and still is a primary focus, as well as respecting, embracing and celebrating his unique interests and abilities, just as one would with any child.
When the Children’s Hospital first assessed Tommy at age two and a half years, the hospital’s main recommendation was that he attend a preschool. Needing one-on-one support, he waited a year for funding before Children’s Integration Support Services (CISS) was able to provide support. After unsuccessful tries in other preschools, Bell’s Corners Cooperative Nursery School (BCCNS) became the inclusive, welcoming environment needed. Under the loving, creative embrace of Caron Fitzpatrick, their director and his classroom teacher, Tommy had his first successful preschool experience.
Following Caron’s confident and upbeat lead, the staff, parents, and students at BCCNS, in collaboration with CISS and his kind and creative Integration Support Worker, Debbie Hanna-Jacklin, believed in Tommy’s right to be part of his community. Together and in the spirit of inclusiveness they made the many necessary and complex accommodations that allowed Tommy to learn alongside his peers. They cheerfully and tirelessly supported Tommy and led others in celebrating neurodiversity and all differences. No matter what Tommy needed, Caron embraced all possibilities.
On one particular day, Caron cheerfully noted that Tommy had much better days at school while wearing his self-appointed uniform, a “Cat in the Hat” hat, which she encouraged him to continue wearing. And so it went, Tommy showing Caron what he needed, and Caron nurturing and welcoming him every step of the way. Most of all she treated him like all the children in her care. In this atmosphere of inclusion, the other parents and children learned and grew from the experience of having our family as members of the school community. Despite many struggles and bumps in the road, we all worked together to make it happen! These positive experiences at BCCNS confirmed our belief that Tommy could thrive alongside his peers, and provided the stepping stones for the complicated and daunting journey that has brought him to where he is today.
Tommy’s story in the public school system unfolded differently than we had hoped. Despite attempts to have him attend inclusive settings at his community school, the challenges were insurmountable. So, Tommy attended segregated special-needs classes; a primary special needs class; a year at Crystal Bay School; and from age ten onwards the Autism Units at Featherston Elementary and Ottawa Technical Secondary School. These settings provided a welcoming atmosphere with kind hearted teachers and aids, when Tommy’s challenges required accommodations which regular classrooms didn’t provide.
As a family, we provided inclusion for Tommy with his peers in his community in other ways. He enjoyed play with neighbours and friends of his brother, and in various recreational opportunities. Tommy eventually found his place in inclusive environments primarily through sports, where he still thrives and shines through his strengths and physical abilities.
We didn’t know what the future held for Tommy when, at age 14, Tommy began jogging daily with his dad. We just knew that he was very happy as he headed out on that first jog, despite being only able to jog about 200m before having to walk to catch his breath. He was overweight from medications used to alleviate his self injury and anxiety. The initial goal was simply to see if he would enjoy participating in a few local 5k jogs. But with an enthusiasm true to Tommy’s essence, his mantra quickly became: “I’m going to be the First Fastest Runner in the World!” Now, with each new milestone he achieves, his dream becomes more possible. He works hard and strives daily, with the Ottawa Lions, the Pacific Institute for Sports Excellence in Victoria, Chula Vista’s Olympic training center, and Altitude training in Flagstaff. He’s won Road Racer of the Year for the past five years at the Ottawa Sports Awards, and has been featured in Runner’s World magazine and in many other news stories.
Tommy’s language also continues to grow. He eagerly uses social media, Facebook, and his iPhone to converse in written words, which remains his strength. Speech and auditory processing remain a huge struggle, and yet, amazingly, Tommy is at ease with a microphone when speaking publicly! He’s chosen to be a motivational speaker, sharing his story with large groups at local schools, at the Geneva Center for Autism International Symposium in Toronto, CHEO’s Autism Program, and most recently at Andrew Fleck Children’s Services’ annual general meeting.
Tommy’s reach goes even further than his keynote talks, as his thriving YouTube channel, “lookyus”, has over 26 million views and 32,000 subscribers! Tommy’s amazing story gives hope to viewers, especially others with ASD and their families, showing the success people experience when their strengths are encouraged and celebrated!
Perhaps Tommy’s best message to others is to embrace life fully. He’s been a competitive Nordic skier, a kayak national champion, a talented rock climber, a tandem biker, sailor, canoeist and horse rider! He’s enjoyed incredible wilderness hiking trips with his older brother Paul and sister-in-law Laura, and loves visiting the Assiniboine Park Zoo in Winnipeg where Laura works. He’s learned to play the guitar and done amazing drawings with his personal support worker, Phil, who teaches him daily at home.
Tommy’s journey has been joyful, and he has found inclusion in his community, surrounded by many wonderful and kind people who have supported him and cheered him on each step of the way. We are thankful for these wonderful friends, professionals, immediate family, extended family, fellow runners, coaches, YouTube fans, online followers, and fellow Disney enthusiasts!
What’s next for Tommy? The sky is the limit, and it’s sure to be exciting, as he makes new friends daily, and invites others to join him in his “Whee!” – his exuberant expression of excitement each time he embarks on a new adventure!
Feel free to reach out to Tommy, or me, his very proud mom, on his social media!
Learn more at Tommy’s website www.autismmeansfriendship.com
MaryAnn Given