May 2014 – Tommy Des Brisay

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.

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)

Tommy Des Brisay

Runner, Para Athlete

Month: May 2014

Tommy’s First Marathon

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Tommy’s Epiphany (At his very first road race) September 24, 2006

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Canadian Running Magazine Story

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Seeing Language in Colour

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Mother’s Day 2014

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