Following in Paul’s Footsteps

Tommy is known for his smile. A smile that shines as he runs races, makes yet another new friend, dances with princesses. The same smile that beamed as he crossed the stage to receive his “Certificate of Accomplishment” from his high school’s “Autism Unit” in June 2012.

Upon graduation, Tommy made it clear that he assumed he would go to university, to “be like his big brother Paul”, who studied Zoology at the University of Guelph, graduating in 2012. Tommy had visited him often, saw the campus, met Paul’s fellow students and roommates. Although what happens in a lecture hall remained a mystery to him, he was determined to follow in Paul’s footsteps.

As a young child, Tommy’s Autism made his relationship with Paul different than that of “typical” siblings. Their bond, however, was undeniable. They played for hours, rough and tumble, on the trampoline. Paul helped keep Tommy safe without being recruited, cheered every word when Tommy finally began to speak, and came up with his own theories about Autism. Tommy kept up with Paul and his friends, made them laugh with his antics, and was embraced by them as one of the gang as they hung out in our basement. Sure, there were communication and behavior challenges, but Tommy was still just one of the guys.

Our belief was always that Tommy belonged in our neighbourhood school, alongside Paul and the kids on our street. We really tried. We believed. We supported the school and Tommy in every way possible. On Tommy’s first day at the school across the street, Paul walked there with Tommy proudly, hand and hand. It seemed obvious to us that this was Tommy’s right, and the right of all others with differences. We knew there were challenges ahead, but were optimistic and steadfast in our belief in inclusion.

But when the barriers became too insurmountable, the “segregated” Autism classroom far across the city became a surprising oasis of acceptance. It was as though a red carpet was rolled out with a welcome banner reading “You have Autism? Great!” Sometimes you feel more included in a segregated setting than in an “inclusive” setting.

Despite their separate schools, the bond between brothers grew, and Tommy aspired more and more to be like his big brother Paul. On his 13th birthday, Tommy hurried to Paul’s closet, gleefully seeking jeans and a t-shirt, exclaiming with relish, “A teenager’s clothes!!!” Sensory issues had driven his clothing choices for years – soft sweat pants, turtlenecks, and before that, solid red clothes, even a phase where a “Cat in the Hat” hat was worn at all times! But, on that day, his desire to be like Paul surpassed all sensory needs, as he sought to emulate his cherished brother’s teenage fashion sense!

So, years later, when Tommy expressed a keen desire to follow Paul’s footsteps and go to university, it was not a surprise. The logistics, however, seemed daunting. Academically, Tommy did not have the entrance requirements – a Grade 12. But by fall, he sobbed daily, his heart broken upon finding it was not in the plans for him to be like Paul and go to university.

And so, as always, the process of creative problem solving began, both on his part, and ours. Thinking outside the box is such a way of life for us, we are often so far outside the box, we can’t even see the silly box anymore, anyhow!

After investigating all possible schooling options in our area for an adult student with Tommy’s needs, we still produced no schooling plan for Tommy. So he came up with his own idea – “homeschooling”, a term he learned when he met someone wearing a homeschooling t-shirt! Tommy is a man of action, not one to wait around or waste time! In September, he sat every morning at the kitchen table with science books- Zoology in particular- reading, making notes…. a serious student.

Throughout the fall his requests to study at university intensified. I had the idea that maybe he could audit a class at university, with a support person. I knew he would be thrilled to attend classes at a lecture hall full of students his age, to feel part of the university community. In other settings, he’s been able to sit quietly and listen in a large group for long periods of time, especially with his iPad and iPhone handy. I called the university and learned that to audit a class you need permission from the professor. A family friend, Dr. Sonia Wesche, had recently become a Prof at the University of Ottawa.

I called Sonia and she was really receptive to the idea! She was to teach a first-year environmental science class in the winter. It was about man’s impact on the environment, looking at many things that really interest Tommy – oceans, climate, ecosystems, biology, and geography.

The next piece of the puzzle was finding a support person for Tommy. Jen Perrault, a runner with the Ottawa Lions who trained and rock climbed with Tommy, happened to be available and was interested!

The week before class began, Sonia, Jen, Tommy, Peter and I met, and walked over to see the lecture hall, in a new building on campus. Sonia checked out her audiovisual equipment while Tommy sat with Jen, looked around, and took it all in. Tommy was to be one of 200 students. Sonia’s Power Point presentation with each lecture would provide visual supports – pivotal for Tommy! Things all seemed to be falling in place!

At the university’s registration desk, the staff watched as Tommy signed his name in primary printing, and we spoke on his behalf to answer many questions. Adel, his Autism Dog Guide, faithfully at his side, he was clearly not a typical student. But he was a human being, prepared to give it his best shot, eager to learn, and take part in the next adventure of his life.

Like everything when Autism is involved, it was an experiment. And, as always when Tommy begins a new adventure, I wrote him a “Social Story” explaining what would happen, the expectations, etc. Tommy read it with rapt attention, gleefully embracing this opportunity!

On the first day of class he met Jen, and off they went, happily chatting, Adel at Tommy’s side. It seemed too good to be true! In class, Tommy sat quietly beside Jen, diligently copying the Power Point notes into his iPhone, with detailed precision.

At the end of the class, Sonia took an informal survey of the class, asking for a show of hands – who was from out of town, who was in first year, who was in fourth year, etc. When she asked if any students were varsity athletes, Tommy announced with pride, “I’m going to be the first fastest runner in the world!”

After class Sonia, Jen, and Tommy met for coffee at a small café in the building. Tommy had tea and enjoyed a social moment, like any other student on campus might after class.

During the second class, Tommy continued to listen intently and take notes. In closing, Sonia asked if anyone had a question. Tommy asked, “What is your first favorite animal of the African savanna?” And, umm, they were not talking about the African savanna that day. Sonia handled it perfectly, assuring Tommy they could talk about it after class.

I then wrote a new Social Story, explaining what it means to be an auditor. Auditing means listening, Tommy is an auditor, etc. We suggested he e-mail Sonia his questions (he communicates best using the written word, so this idea appealed to him.) from his new, yes, wait for it….University of Ottawa email account! (Tommy’s first email from this account was to Paul, who replied “I’m proud of you, Tommy.”)

The third class, Tommy met Jen at her house, a few blocks from campus, to walk to class. They passed Sandy Hill Elementary School as the kids were outside playing. Tommy said to Jen “There’s no recess at university!” (Actually …there is… it just happens on Friday and Saturday night and has special beverages!)

Tommy took the new “Auditor” Social Story to heart (Social Stories have always been an incredible tool to enlighten him about all of society’s rules and expectations). Not only did Tommy listen quietly the remainder of the classes….he even shushed his dog Adel once when she snored in class!

Tommy gleamed with pride in becoming a university student. He told everyone on Facebook that he was attending the University of Ottawa. His friends congratulated him. It was all very positive.

Tommy attended every class and his behavior was exemplary. Near the end of the semester, the students met in small groups to present posters they had created. Their fellow students asked them questions about their work. Tommy had questions for them, which were met with patience and acceptance. “What is your first favorite vegetable?” was a recurring question. And, this time, the topic really was about vegetables.

On the last week of class, it happened to be Autism Awareness Day, April 2nd, 2013. I followed Tommy to class that day, and made a video of his experience, to share on his YouTube channel. I wrote a thank you to Tommy’s classmates, which Sonia posted on the course web blackboard, sharing that Tommy has Autism, and inviting them to learn more about him if they were interested. One of the students sent a kind, friendly facebook message to Tommy. Most remarkable was the unremarkable response most students took. They simply accepted his presence in their midst. Without question.

Tommy completed the semester with pride, with a renewed sense of belonging, and hope, and dreams. Jen became an even closer and more trusted friend, having shared in this adventure and success with him!

At the onset, our hope was that Tommy would be included as a member of a learning community of young adults. It was not our primary goal that he learn the course material. However, at every class he wrote detailed, accurate notes on his iPhone, from the PowerPoint presentation. Autism is a mystery. Tommy’s ability to learn is fascinating- he can easily acquire vast amounts of information- Disney trivia, breeds of horses, breeds of dogs, trains, calendar dates, and many other areas that have been of high interest to him. How much Tommy truly absorbed of the course content remains unknown. But that was really not the point.

Mostly, he sought to be like his big brother Paul. There was a mystery to the word “university” – he had heard it so many times. I think he felt like he was missing out on something really amazing (he was, right?) We wanted to support Tommy in his dream to be like his big brother Paul, and have every opportunity that Paul experiences in this world. Just like when they were kids, we believe Tommy, like everyone, has a right to be included and welcomed. And that others have the right to know someone like Tommy, to experience his friendship, and gifts. And to be given the chance to embrace him in their midst.

With an open mind and heart, one can easily understand how this makes sense. Sonia accepted Tommy into her class with grace and confidence, without any question or fuss, as though it was an everyday occurrence. As it should be. Jen happily became his best ally and biggest cheerleader, warmly providing friendship, security, and gentle guidance to Tommy in this new situation. And we steadfastly stood by, as we do, knowing that at any moment, had it become difficult or uncomfortable for anyone involved – Tommy, Sonia, the other students, we’d have looked at creative solutions, or changed the plan altogether. But that didn’t happen. Tommy Des Brisay, a student at the University of Ottawa, attended each class of ENV 1101, and walked a little taller each time he, Jen, and Adel crossed the threshold of that lecture hall. An eager, hard working student, as human and imperfect as any other, willing to give it his best effort. And, once again, smiling an extra huge, proud, Tommy smile 🙂

And when his big brother Paul heard of Tommy’s success, he was proud too. Sometimes the dreams you have for those you love happen in their own time, in their own way. Not necessarily how you originally hoped or envisioned. But in a unique and unexpected way.

Many Thanks to Dr. Sonia Wesche, Jen Perrault, and Tommy’s fellow students in ENV 1101, Winter 2013, for embracing Tommy and making this experience possible.

“Unless someone like you cares a whole awful lot, nothing is going to get better…it’s not.” –The Lorax, Dr. Seuss.

Update as of August, 2013:

We are looking at the course calendars for Fall 2013, as Tommy is keen to repeat this positive experience. Also, Tommy has now grown a beard, to be like his big brother Paul. And is keen to become a vegetarian. Because, sometimes, every single thing your brother does is just the coolest thing ever.

Second update, as of May 2014:

Tommy successfully audited one class in the fall of 2013, and in the winter of 2014, with the support of two new friends, Ellen Tousaw and Jen Canos.  He eagerly attended, took notes, and continued to feel proud to be a university student.  Ellen and Jen have become close friends…you may have seen them in the video of Tommy’s marathon, cheering and greeting him at the finish line!  Thanks, Jen and Ellen.  You rock!

Here is the YouTube video of Tommy and Jen going to class!

Paul’s post about hiking in Iceland with Tommy and Laura and Jordan

Note: Tommy’s big brother Paul wrote the following post (for a blog he and Laura were keeping online at the time) after they hiked in a remote part of Iceland together along with Laura and Jordan, while Jordan was making a documentary.  We wanted to share Paul’s post here, so Tommy’s followers could enjoy hearing Paul’s perspective on this amazing adventure with Tommy.


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Tommy and Me

My brother and I have different outlooks on life. Not so much on politics or social issues, but how we interpret the events around us and formulate an impression of our surroundings. For example, I can consider the implications of my actions on others, estimate the cost on a good or service, and differentiate a raised voice from anger; he can not. That is not to say that he is unintelligent; Tommy is autistic.

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Jordan and Tommy on the boat to Hornstrandir
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Jordan and his filming rig

Surprising as it may seem, the biggest challenge on our Iceland Hornstrandir trek was not the weather or the challenging hiking, it was having Tommy and my childhood friend, Jordan, along for the ride. Jordan is making a film about my relationship with Tommy, and this involves isolating us in provocative (stressful) situations and extracting our thoughts on life. This was to be the climax of his documentary. For me, the fact that Tommy got a trip to one of the most isolated regions of Iceland was very rewarding; I doubt that that many autistic adults get similar opportunities.

As rewarding as it was, anyone with a sibling will know how annoying they can be. On top of that, having Tommy along presents some unique and interesting challenges:

 Food

Of the many parts of his brain that do not function “normally”, the mechanism that indicates hunger or satiation appears to be non-existent. When on a 5-day trip with no external access to food it can de disconcerting when you look away for a second and he has consumed an entire bag of carrots or, when offered some trail-mix, attempts to take as much as he can possibly fit in his hand.

Tommy is also sensitive to gluten and dairy, but relies on others to tell him what is gluten- and dairy-free (He frequently tried to steal yogurt from us). Despite him frequently proclaiming: “I am a VEGETARIAN for breakfast”, barely a hour went by without him asking us what our favourite cuts of chicken were.

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Tommy often imitates actions and speech

Hygiene

Tommy, like many others with autism, fixates on routines. In a normal day at home these are calming activities, but out of context they can be a source of frustration for him as well as for me. Tommy wears contact lenses and never forgets to put them in or take them out. As soon as he wakes up he begins demanding to change his glasses for contacts, which requires washing his hands and a looking in a mirror, things not easily done on a beach facing the Norwegian Sea. And though obviously none were present, He often suggested showers. Interestingly, however, he never seemed to go to the bathroom without me asking if he needed to.

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Big pack, big smile

Sleeping Arrangements

For simplicity, I sleep in mostly the same clothes I wear during the day. This was unacceptable for the more affected in the crowd. Tommy’s demands for “nice warm japamas” were not aggressive but… unrelenting, and after a long day hiking he is quick to declare “I think I’m ready for bed!” even before tent was set up (for which his help was more of a token gesture).

Fitness Level

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Laura and Tommy displaying his favourite pose

People we met often commented that Tommy had the largest pack of our group, considering it strange that the “disabled” member of the group had the biggest load. What they had trouble comprehending is that Tommy is an elite athlete, competing at a national level in long-distance running, cross-country skiing and flat-water kayaking. He was by far the most fit member of our group. In campaigns for the acceptance of disabled people I always see the slogan: “see the ability”, and in Tommy’s case this an especially important. Even with the biggest pack, our breaks would usually end quickly with Tommy, a smile on his face, stating: “I think I’m ready to keep hiking!”.

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Tommy was non-verbal to the age of 7 and even now, at 21, he borrows most of his phrases from Disney movies. He was behaviorally difficult, often self-injurious, and until only a few years ago I would never have considered a trip like this possible. That fact that we pulled this trip off without a hitch shows just how much progress he has made, and how much more is possible. And on top of everything else, I’m finally getting to spend some quality time with my Bro.

Visit Tommy’s youtube channel if you want to learn more about his life.

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