Tommy Des Brisay and Adel, his Autism Assistance Dog Guide had the honour of being featured in a story in a wonderful online magazine called Zoom Autism!

The link to this issue of the Zoom Autism magazine is here…
Tommy and Adel are on Page 11!
https://www.joomag.com/magazine/zoom-autism-magazine-issue-6/0538459001449160242?short

Check out Zoom Autism’s Facebook page, too!

Canadian Running Magazine November 2015 featured a four page story about Tommy! Click here to see the pdf and read the story!
Thank you to Martin Cleary and Canadian Running Magazine for the wonderful story!
CanadaRunning

June 11, 2015
Exciting news! Last night Tommy ran the 1500m in 4:18 in a Twilight series official race at Mooney’s Bay track. The qualifying time for a T20 para athlete (Tommy’s para category) to qualify for the Para PanAm games in Toronto this August is 4:20 or faster! 🙂 🙂 It was a very magical moment! Thank you to Alex for being there with Tommy and sharing in this moment!!

There are still some further selection criteria that must be met in order for Tommy to attend the Para PanAm games. We will keep everyone up to date as time goes on and we know more details. For now, all we know is that he has shown that he can run the standard required! Stay tuned 🙂

This photo is just a screen shot from MaryAnn’s video, of Tommy with one lap to go! There is a video…it’s coming… 🙂

In 2008, when Paul was about to attend university, I wrote the following letter to Autism Society Ontario, nominating Paul for a scholarship for siblings of persons with Autism. I want to share it here.

I would like to add that since the writing of this letter, Paul has continued to amaze us with his devotion to his many passions in life.  He has worked in the Amazon in Ecuador and Brazil, worked in the Yukon, and many other interesting places.  He graduated from the University of Guelph with an Honors BSc in Zoology, and is now starting his Masters degree researching songbirds. He has taken Tommy on his first back country canoe trip, and hiking in a remote part of Iceland!  He has become engaged to an extraordinary woman who shares his passions and dreams.  We love you Paul, and are so very proud of all you have accomplished!

May 2008

“I am writing to nominate my son Paul for the Jeanette Holden Post-Secondary Education Entrance Scholarships for Siblings of Students with ASD – 2008.

 

Paul was 2 years old when Tommy was born, Paul’s first and only sibling.  Paul was keen to help care for Tommy with a protective attitude right from the beginning.  If I needed to attend to something for a moment he would offer to watch Tommy, saying “Don’t worry Mom, I’ll take care of the little nipper!”  When Tommy was still not talking at age 2, Paul theorized, saying “I think that there is a “talk tube” which connects our brain to our mouth, and when we think of what we want to say the thoughts go down the talk tube to our mouth.  Tommy’s talk tube is not connected up yet, but I think that as he gets older it will slowly start to get more and more connected until finally it’s hooked up and he will talk.”  He said this with great optimism, and he celebrated every small achievement of Tommy’s with great enthusiasm.  Paul and Tommy spent many hours in rough-and-tumble play on our trampoline, and Paul always included Tommy in his play with his friends, who followed Paul’s example and treated Tommy like one of them.  At age 5, Paul said that when he grew up he would buy the house next door to him for Tommy to live in, so he could always take care of him.

 

A born researcher, Paul sought to learn more about Autism from a very early age.  At  7, he overcame his phobia of needles (still a problem to this day!) because he wanted to donate his blood to Jeanette Holden’s research program.  He understood the importance of making this contribution.  When Paul was 9, he asked if he could attend the Geneva Center Symposium for Autism with us, genuinely interested in learning more about Autism.  I asked the Geneva Center if a sibling child could attend, and although they seemed surprised, they allowed it.  Paul thrived on listening to the information, enjoying Temple Grandin and other speakers immensely.  At age 11, Paul expressed a need for friends who understood Autism and had siblings like Tommy.  As there were no sibling support groups available at the time for children his age, Paul proposed he start one. He named the group SWEET “Siblings Who Escape for Evenings Together” and advertised in the Autism community, and we soon had a group that met for activities. Paul also helped fundraise for the Autism Society.  His grandmother crocheted snowflake ornaments and I organized a snowflake sales fund-raiser for the Ottawa Chapter.  Paul took the initiative to go door-to-door to help out with this project, which raised over $900.00. When Paul was 12, he attended a day camp at Little Ray’s Reptile Zoo, and a child with ASD was enrolled.  The counselors asked Paul if he would be the child’s “buddy”, as Paul understood the child and was a willing helper.  The counselors said they could not have managed without Paul’s help.  When Paul was 13 and 14, he worked as a relief worker for a family with a son with Autism.  He did an amazing job and was a great help to that family.

 

Paul wrote a speech about Autism in Grade 6, was selected to represent his class in the school competition, and then invited to give his speech to teachers to help the staff better understand Autism.  Tommy was attending Paul’s school that year, and although our wish was that Tommy integrate, attempts were unsuccessful. Tommy was more successful in segregated classrooms for high need students with Autism.  Tommy is an explorative, hyperactive, determined child who remained non-verbal until the age of  7.  His behavior is very challenging due to anxiety, self-injury, aggression, and safety issues.   We have continued to be an active family, and Paul has been a huge source of support in our family in terms of helping with his brother’s needs.  Family activities and travel have been difficult for Paul.  Not only did he not have a “typical” sibling with whom to share games and conversation, he also was affected by the extraordinary limitations that we often experienced due to Tommy’s Autism.  Paul’s adventurous spirit and sense of humor helped him to remain upbeat and positive at very difficult times.  When Tommy was 5, we travelled to California seeking ABA therapy, which was not available in Ontario.  Paul was only 7, and yet he helped us enormously, watching Tommy and being exceedingly cooperative whenever we were experiencing difficulty.  We attempted to go to Disneyland as a family, but Tommy could not cope with the crowds and over stimulation, and within an hour of arriving we needed to leave because Tommy was having a breakdown.  Paul accepted this without complaint, and we travelled back two hours to where we were staying.  Paul and I returned later that day to use our tickets and spend the evening at Disneyland without his brother or father, which, although joyous because we were at Disneyland, was also a sad moment as a family.  I remember Paul saying that he sure wished Tommy were there to enjoy the fireworks display with us at the end of the day.  He has always wished that Tommy could participate fully in everything that he could.  Later, when Paul was 12 and Tommy was 10, we traveled across Canada, camping as we made our way to visit relatives living in Western Canada.  Paul and his father would work together to set up the trailer, while I watched Tommy for safety reasons.  Paul often helped also by watching Tommy while we showered, etc, always helping us to keep tabs on Tommy’s safety.  Although we did not ask it of him, he chose a helper role readily and willingly.

We provided Paul with his own cell phone at age 10 because he was such a help to us at times when Tommy went missing momentarily.  That way, we all had cell phones and could keep in touch with each other as we searched.  Paul’s ability to help us in such situations was remarkable and well beyond his years.  Paul has always been at ease around Tommy, always able to reassure him, help keep him calm and safe, and cheer him or make him laugh.  They have always play wrestled like “normal” brothers, and one thing they have in common is their physical strength and athleticism. When Tommy and Paul were 10 and 12 years old, Tommy expressed an interest in horse riding but there were no Therapeutic Riding organizations able to take him at that time.  However, Paul happily attended private riding lessons with Tommy at a farm we found willing to accept Tommy.   It was so helpful to Tommy that Paul was participating as well.  More recently, Tommy was able to fully experience and enjoy the Ariel Adventure course at Camp Fortune with Paul as his helper for both safety and understanding the procedures and rules.  At the peak of his excitement, Tommy exclaimed from high in the trees “I love “hanging out” with you Paul!”

 

Paul’s passion for animals began in his preschool years. Paul wanted a pet more than anything, but no matter what small pet we tried, Tommy’s curiosity and interest in the animals, combined with his lack of understanding and Autism, posed problems.  Hamsters were set loose, budgies set free out of windows, etc.  As Tommy’s safety was such a huge concern, and we applied for an Autism Service Dog when he was 7. National Service Dogs had had very little funding then, and said because we lived in Ottawa it would be a very long wait.  We then decided to get a Lab puppy from a local breeder as a family dog.  Paul was thrilled and picked out a puppy, naming her Sara.  National Service Dogs later offered us the option to send Sara to them for 6 months of training as Tommy’s service dog.  Paul offered to give the puppy he had chosen to Tommy as his service dog, a huge sacrifice on Paul’s part as a gift to Tommy.  Once Sara returned as a fully trained service dog, Paul was expected to remain relatively aloof towards her to increase her bonding with Tommy.  Paul then began coming up with new ideas for “Tommy friendly” small pets, and after some research he chose a hedgehog. His theory was that since hedgehogs roll into a ball and their prickles protect them when threatened, this would keep Tommy at bay!  It seemed a good plan, until Tommy decided the hedgehog should go swimming in the sink, and we found the poor hedgehog struggling and Paul decided to give the hedgehog back to the breeder.  Paul continued on his mission to own a pet, at one point managing to raise hamster babies unbeknownst to Tommy, hidden in a cupboard so that Tommy would not discover or disturb them.

 

By age 10, Paul was volunteering at the Wild Bird Care Center in Ottawa, and at Little Ray’s Reptile Zoo.  Even at this young age, he was a very helpful volunteer at these organizations.  He soon adopted his first reptile, a corn snake. Although Tommy loves snakes and was excited to have one in the house, Paul successfully kept it and eventually acquired quite a collection of various reptiles.  Over the years and with Paul’s patience, Tommy has grown to be trustworthy and able to help care for them.  The door to Paul’s bedroom used to be kept locked to give him privacy from his brother and protection of his precious things, but now Tommy is an integral part of Paul’s “home zoo”, and has gained a sense of pride and is very keen to help out.  Tommy has learned a great deal about science and animals because of his brother’s extraordinary interests.  Paul is now a paid employee of Little Ray’s Reptile Zoo, working as a Wildlife Educator in the community giving educational shows with live reptiles.  He plans to study Biology with a major in Zoology this fall at University of Guelph.  This winter, he spent three months in Ecuador working as a Wildlife Volunteer in the Amazon jungle for an organization called Global Vision International.

 

Paul is a very accomplished person for his age, and has overcome many of his own personal challenges.  He has been identified as both gifted and learning disabled.  In spite of being very bright, he has struggled academically with reading and writing.  He has worked very hard in school to overcome his learning disability and has achieved good marks, and yet his marks are not the excellent marks they would be were they a true reflection of his actual potential and abilities.   His true giftedness is best seen in his work at the zoo and in other settings.  For example, in his volunteer work in Ecuador, he was selected as an intern due his enthusiasm and passion for the research work, and his amazing capacity to learn new information about the animals they were studying.  Another challenge he has overcome is that his learning disability also resulted in a great deal of school related anxiety and depression.  He worked hard to overcome these problems, and has never been deterred by the adversity of his learning disability or by the challenges of having a brother with Autism.  He is a remarkable young man with a bright future and career ahead of him, and with an extraordinary compassion for those individuals in society who are different or in need of support.  Being Tommy’s brother is a part of who Paul is and will become, and his commitment to helping animals and the environment comes from a place inside him of great caring and concern for the world around him.  I’m proud to be his mother, and honored to have been witness to how he has risen to the challenges of having a brother like Tommy, how he has embraced the experience from the beginning, and grown into an accepting and compassionate person.  Paul often says that one day when he is doing research as a Field Zoologist, he will hire Tommy to work for him, as he will never find anyone with greater stamina and strength for hiking and carrying equipment, or more fearless (or able to climb the nearest tree if needed!) in the study of snakes and other animals.  Paul understands how to see a person’s abilities, and he sees what Tommy is capable of rather than what he is unable to do.  Tommy has been blessed to have Paul as his brother.  He looks up to Paul, and is proud and excited to have a brother who works at the zoo, and who traveled to the jungle. He accepts that Paul is a busy guy who comes and goes from home, and is always excited to see Paul when he gets home from his many adventures.  I cannot imagine Tommy’s life without Paul.  He is a truly incredible sibling to Tommy.  I know that it would mean a great deal to Paul to receive this scholarship in recognition of his contributions to Tommy’s welfare.

 

Thank you for taking the time to read this letter.”

Tommy completed his first Marathon on Sunday, May 25 at the Ottawa Race Weekend, in a fantastic time of 2:39:12, smiling all the way. He was interviewed at the finish line by lots of reporters, and gave great interviews. His first words when the microphones and cameras were pointed to him were “I have sensational news!” And indeed, it was sensational news 🙂 He placed 28th overall of 7,000, 21st overall male, 10th Canadian male, 3rd in his age category, and was the 1st Ottawa resident! But mostly, he had fun and inspired people near and far 🙂

It seems like today is a perfect day to share Tommy’s “First Fastest Runner” song once again. Enjoy!

Here is a link to the story the CBC ran about Tommy.

And there is an awesome story that appeared in the Ottawa Sun.

Tommy’s Epiphany (at age 14)

Written by Tommy’s mom, MaryAnn in September 24, 2006, after Tommy ran his first large, organized road race.

This weekend Tommy participated in his very first road race. The pre-race registration, and a barbecue afterwards, were held at the veterans’ hospital. I was excited at his achievement of the milestone of being able to participate in an organized race . I was very happy also about his amazing run where he finished in the time of 26 minutes, much faster than he has ever done a 5 K while jogging with Peter. But, as it turns out, the outing was to contribute to Tommy reaching a much more important milestone in his development and learning. For lack of a better word, I’m calling it an epiphany. It went like this:

Last night Tommy was dictating sentences for me to type in his online Live Journal about the pictures from the race. We came to a picture taken at the barbecue of a man giving Tommy a hamburger. Tommy insisted that I write “the old man”. I finally agreed to write that he was old, but insisted on adding “nice” old man.

Later, while dictating a sentence to me in a different entry about my birthday dinner at Grandma’s house Saturday night, he wanted me to write “This is my old grandmother”. He then scrolled down in his Live Journal to find a photo of Charlotte’s grandparents in Oshawa (Charlotte is Tommy’s cousin, one year younger, who is very close to him). He was fixated on how old they are, and was asking me what was going to happen to them. He kept saying “We don’t want to have to sell Charlotte’s grandparents.” Tommy often refers to a Disney video called “Small One” in which a boy’s father asks him to take a very old family donkey into town and sell him, because the donkey is too old to earn his keep. The boy is sad to part with the donkey, but eventually finds a very kind man who agrees to give the donkey a good home. Tommy has talked of having to sell Sara, his dog, when she gets very old, and already has chosen family friends Tom and Nancy as the likely recipients of Sara in her very old age. They are both dog lovers and very kind souls who live on a farm where he feels Sara would have a good life. Tommy often rehearses this and says “I’ll sell her to you, Nancy, if you’ll give her a good home”.

Anyhow, when Tommy began obsessing about anyone “old” in his Live Journal, I recalled that on Saturday night at my birthday dinner he had asked both Grandma and Grandpa “What happened to your Grandma? What happened to your mother?” We told him they had gotten very old and had died. He has never asked us these questions before. It was like he had suddenly become aware that there were family members who had come before them and must have been older, but are no longer around. The more I thought about what could have led him to ponder these things, I realized that on Saturday morning we had spent time in a nursing home setting, and he had seen many wheelchair-bound, very old people. I had not paid much attention as I had been so focused on Tommy and his racing. But Tommy obviously noticed! (Let’s just say that visiting nursing care facilities with Tommy has not been high on our list of ideal outings for Tommy, given his past disruptive nature. In fact, while Peter and Tommy were stretching after the race near the door, a woman entered the building being pushed in her wheelchair, and the automatic door opened and hit Tommy’s body as he stretched. He reacted by yelling loudly “Leave me alone you big bug-eyed bully!”…. not really something that is easy to explain to an elderly woman!

So… as Tommy began discussing old people and what happens to them, his questions became very specific and he asked me directly “What will happen to Charlotte’s grandparents when they get older?”. I opted to answer very directly and said, “When they get very, very old they will die”. Tommy stared at me with a look of intense thought, combined with disbelief and confusion, and his face became increasingly distressed until he covered his face with his hands, lowering his head down and saying “Oh, no…”, sighing in despair. I told him it was all right, that very old people are tired and sometimes they get sick, and eventually they just don’t have any energy anymore. I tried to console him by saying that they had a good life and were happy, and that they were somehow OK with their inevitable expiry, blah, blah, blah. (spoken like someone who at 46 still believes this process is very far in the future!) He continued to look at me incredulously, obviously shocked at the realization he was having. Desperate to console him, I briefly considered telling him about the concept of heaven and seeing people again (which would involve the concept of him dying and meeting up with them…), etc, etc, but decided that was just likely to confuse matters at that point! I was trying to keep it simple. As if. (In fact, I think Tommy has a fairly good notion of what ghosts are supposed to represent. He has spent time watching Casper cartoons, etc. Also, he recently asked me “Who is Cinderella’s godmother?” repeatedly until I finally responded ” I don’t know Tommy, who is Cinderella’s godmother? ” and he replied “Cinderella’s dead mother.”)

Tommy then went upstairs looking exhausted by this horrific, mind-bending realization, and then I heard him upstairs saying to himself “Oh, Grandma … Oh, Grandpa … I’m so, so sorry… ” (Nana will be pleased to hear that she apparently does not qualify as a person old enough to be of concern in these matters). I went upstairs to talk to him and, seeing the look of utter distress on his face, I told him that Grandma and Grandpa would live a long, long time… that they are only 75 and they could live to be 100. I told him that as they got older he could take care of them, for example…read Grandma pirate stories, push her wheelchair when she gets very old and tired, and that she would be very happy to have him take care of her. He cheered considerably at that thought, even began to chuckle and say “Oh yes!” I also tried to direct his attention to the next generation, saying that by the time this happens he will be over 30 and a grown-up man, and he will probably be an uncle because Paul might be married and have children for “Uncle Tommy” to play with and help look after. I told Tommy that he might get married too, and have children. He then asked me “Who will my wife be?” This was the first time he ever asked me this. Usually he confidently states that he will marry his cousin Charlotte, “in Hanover… at the wedding”. When Paul or anyone else tells him “You can’t marry your cousin.”, he has always responded confidently “Oh yes I can!” But this time he was asking for my input, so I said “I don’t know who you will marry, but maybe you will meet a girl when you are older, when you are 20 or 30 years old, and maybe you will want to marry her.” He responded, “I can’t marry my cousin.”. I answered, “No, you can’t marry your cousin. Your cousin is your friend and will always be your cousin, and you can even maybe live with her some day, but you can’t marry her.” He then asked me again “Who will I marry?” so I asked him “Who do you think you will marry?” and he immediately answered confidently “Ayla Lloyd”. Ayla is a girl Tommy goes to school with and he has frequently proposed to her in the van when they were riding together home from school last year. Her ability level in many ways is quite similar to Tommy’s. She is talkative and friendly like Tommy, more so than most of the other teens with autism in their program.

Tommy seemed a little cheered up by the knowledge that there will be new and important people in his life in the future, even as he came to the realization for the very first time that the older people he is very attached to may not live forever. For the moment, I’m not sure whether he gave any consideration to the fact that all of us will eventually become old. I don’t know if he became aware of his own mortality, or even mine and his father’s. But for the first time I think he truly understood that the oldest people in his life will not live forever. We have been fortunate that Tommy has not had to deal with the death of anyone close to him. Hopefully when the time comes he will be able to talk about his feelings. The level of conversation I was able to share with him last night encouraged me.

Now… if everyone could please promise to live until they are least 100, so as not to make a liar of me, I would appreciate that very much! I thank you kindly in advance for your cooperation in this matter 🙂

May 2014:  Post script-

In December, 2010, Tommy’s Nana Margaret died of cancer.  Tommy helped us care for her in her final months, and days.  He held her hand gently, pushed her wheelchair on walks, read to her, and cherished every last moment with her.  She died at home, at 78, in her own bed.  Afterwards, Tommy said his final fond  goodbyes, at her bedside, bravely, and asked me, his mom, to please tell him the story of Nana Margaret’s life, from her birth to her final moment.  As I told the entire story, and Tommy listened intently, his big brother Paul stood by steadfastly, lovingly, and bravely.  Nana Margaret taught Tommy many things in her lifetime as his Nana.  And she taught him so much in her death, too.  Tommy stood at the podium at her funeral, and spoke clearly, lovingly, and most emphatically, as he described the many things he had shared with her.  Many were moved to see Tommy, the autistic grandson who Nana had worried would never speak, stand proudly, talking about his Nana Margaret.  I think she was very proud of him that day.  We love you, Nana.  Thank you for all you did to support Tommy, and all of us, in life’s journey.

 

Canadian Running Magazine ran a story about Tommy in their April/May 2014 edition! Here is is:

Adel was in the back yard just now, and Peter looked out and saw a skunk on the deck right by the back door! Adel was lying there, relaxing, as the skunk approached her!

Peter freaked out and yelled really wildly, in a panicked and shouting frenzy, opening the door and frantically calling Adel inside, hoping to avoid her being sprayed!!! Adel got up, briefly sniffed at the skunk, then came inside. Whew!

The skunk scurried off. No spraying at all. Yay!

And then, the most interesting part happened. Tommy said to Peter “Dad, was your voice red?”

Tommy truly sees language. He literally sees the words being said. There was a time when he used to spell words aloud that he could not say. And sometimes, when he could not say a word, or spell it aloud, he would say, in frustration “I can’t read it!” Without seeing the visual image of a word in his mind, he could not say it at all.

Later, when his reading, and therefore his speech, improved, there was a phase where he used to say the punctuation aloud, as part of his sentence. For example, he would say “Look (exclamation mark)”. In another phase, he used to say everything as though he were reading a story aloud as it was happening. For example, he would said ” ‘I’m going to school.’ said Tommy.” Yes, he said the “said Tommy” part. 

Tommy loved punctuation and learned it readily, along with other nuances of the written word- like the fact that block capitals means shouting, etc.

Social stories and visual schedules always were, and still are, an incredible support to Tommy. He is just so much more able to take in information visually, and in the written form.

Some day, with Tommy’s help, I hope to write more about his language development. Luckily, we have lots of diaries in the form of communication books, home videos, etc.

If you are a reader who has known Tommy a long time, it would be great to hear below in the comments something interesting that you remember about his language development!

It would also be great to hear interesting things about others who, like Tommy, see language so visually, no matter where you are on the spectrum 

Go! (said MaryAnn) 

After working all morning on a beautiful drawing of me, Tommy is now in the basement stretching for his run, and he chose to play “Baby Mine” from Dumbo as his stretching music (by Steve Tyrell, one of Tommy’s very favourite Disney cover artists, which makes it even more beautiful to listen to  And today, Mother’s Day, the lyrics ring so true, it brings a tear to my eye.

“Baby mine, don’t you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine

Little one when you play
Don’t you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine

If they knew sweet little you
They’d end up loving you too
All those same people who scold you
What they’d give just for

The right to hold you
From your head to your toes
You’re so sweet, goodness knows
You are so precious to me
Sweet as can be, baby of mine”

Wishing all the moms out there much love. And especially those with a special needs child, no matter how much you are struggling to believe things will be ok, trust me, your child will learn to fly. That magic feather is there in the least expected places. The magic is the love in your heart. 

https://www.youtube.com/watch?v=OGlXZfVXWnw