Family life

How one special kid changed my life

Katie Dupuis reflects on a child she once worked with at camp when she was a teenager.

1SpecialNeeds-November2013-iStockphoto

Photo: iStockphoto

Today’s Parent managing editor Katie Dupuis likes structure and organization. A lot. Now, imagine this Type A editor with a baby. Funny, right? We’re sure you’ll love Katie’s musings on life with Sophie and husband Blaine.

I was a camp counselor for more than a decade. How is that, you ask? Well, I started as a leader-in-training when I was 12 and left as the camp coordinator when I was 23. Summer was my most favourite time of year — between spending my days programming for hundreds of amazing kids and spending my nights with fellow staff at parties and bonfires, it was the quintessential teenage experience.  (Sometimes I can’t even believe I got paid for it.)

Throughout the school year, I’d get glimpses of the summer to come. I worked at March Break and PA Day camps, as well as at a Saturday toddler program called Peanut Club. When I was 15, this is where I met the kid that truly changed my life.

His name was Alex. When the offer to work with Alex on Saturday afternoons arose, I was hesitant. It was explained to me that he had a rare skin disorder (called epidermolysis bullosa), and that he was covered in blisters and bandaged from neck to feet at all times, obviously making him extremely fragile. The special needs coordinator said he was shy, may be reluctant to speak to new people and could be difficult to engage. He was older than the program limits, but his parents and the coordinator thought this program would be the right fit for him. They told me I would have to learn how to hold his hand and pick him up.

I thought about it for a couple of days before my mom said, “Katie, maybe this little guy needs you. Maybe he was sent to you for a reason.” I’m sure I rolled my eyes — because I did a lot of eye-rolling at 15 — but I agreed to take the job.

On the first day, Alex spent the initial hours looking at the gym floor. He wouldn’t sing the songs or take part in the games. No matter how much I coaxed him, the best I could get was a cautious glance or a headshake. When his mom picked him up, I gave her a rundown on the afternoon and asked what Alex liked, what his interests were. “Airplanes,” she told me. “Airplanes will be your way in.”

The next week, I was ready. I had been to the library and checked out a few books on different kinds of airplanes. As soon as he saw the stack of stories, Alex lit up. And as soon as he opened his mouth, the words tumbled out and didn’t stop coming. We read about airplanes, chased each other around with arms extended for wings, did airplane crafts and sang “The Junior Birdsmen” over and over. Often, I’d convince him to join in a non-aviation-related activity and he’d make the other kids laugh like crazy. For Christmas that year, I gave him a set of airplane models and he told me the make, year and usage of every single one. He was absolutely brilliant.

I worked with Alex for two years, every Saturday. When I close my eyes and think about it hard enough, I can still hear his little giggle. We both grew up — I went away to university and he went to school. Every once in a while, I’d get a hand-drawn picture delivered by one of my younger camp cronies, signed with Alex’s printing.

In my last week of my last year of camp in 2005, Alex died. He was 13. As sometimes happens with this particular skin condition, an infection gets into one of the open wounds and carries throughout the body. I was broken-hearted when I heard. When I went to the visitation, the room was filled with airplanes, including the ones I’d given him so many years before.

I think about the lessons Alex taught me almost daily, though I sometimes don’t do a great job of remembering to act with his grace and perseverance. He taught me that everyone is fighting a harder battle. He showed me how to be positive, to take the cards you’re dealt and do what you can. He taught me that I could be sensitive, that I could learn how to meet another person’s specific needs. He taught me that sometimes — no, most of the time — it’s just about making a connection. And he taught me that leaving a legacy is sometimes as simple as making a friend.

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