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Stories of Wil: When there’s a Why

Wil riding his recumbent bike

submitted by Christie Taylor

Wil is a 14-year-old boy with Down syndrome. He is the little brother, by 20 months, to twin sisters, Katherine and Elizabeth. Wil mom, Christie, knew very little about Down syndrome when Wil was diagnosed shortly after his birth. It didn’t take long for Christie to realize how enriching life with Down syndrome is. Embracing this newfound life, Christie was compelled to share her experiences with Wil. Christie desire, in sharing these stories, is to promote an awareness, understanding, and appreciation of the amazing capabilities of individuals with Down syndrome.

“Wil, are you going to get dressed?”

“W���?”��

“Because it’s morning.”

“Why Mom?”

“Because the earth made another full rotation.”

“Oh, ok.” Wil went to his bedroom and got dressed.

Though Wil 8th grade year had its challenges, in comparison to his 7th grade year, it was smooth sailing. But it took what we learned in his 7th grade year to break way to the “oh, ok” of where we are now.��

When 7th grade hit, so did puberty and hormones. And they hit hard. Wil developed multiple new behaviors that stumped his teachers and me. With Wil communication delays, I repeatedly asked my own series of whys to uncover his thought processes. I knew we would break way to that “oh, ok” moment, but I didn’t know what that looked like or how many whys it would take to get there.��

My first personal experience with a behavior plan was in Wil 7th grade year. Behavior plans are more “if then” plans that follow their own timeline. Wil teachers and I planned ways to support him through his pubescent changes. We learned from each experience, asked more why questions in relation to that experience, and revised the plan with what we learned. In this way we inched ahead, why-by-why, experience-by-experience.��Eventually, one of his barriers would break and he’d fly forward at full speed. I stood there with my head spinning at the seemingly instant transformation.

Wil has a recumbent bike that he drives like a madman. He cuts corners burning rubber and flies down the grassy hill in our front lawn. The fenders over the front and back tires are bent from spills. Fortunately a fall from a recumbent bike isn’t far. Wil gets back up, and gets back to riding full speed ahead.

Wil recently rode his bike over something sharp — likely a big rock, but he won’t tell me what that something was. Maybe in time he will tell me. Whatever it was, it tore a hole through the actual tire and into the inner tube. His bike was sidelined.

I’ve never fixed a tire on a bike before. I checked the sizing of the inner tube and tire, bought a new one of each, and set to work on replacing it. When I googled directions on how to fix a bike tire, I read that a proficient cyclist can complete the task in about seven minutes. For the novice, like myself, it can take 20 minutes or more. I didn’t time myself, but I can assure you it took me all of that 20 minutes and more.

After replacing the tire, I gave Wil bike a quick test spin. Then I called Wil to come outside. Seeing the new tire, he jumped on his bike and tore around the driveway without hesitation.��

“It fixed, mom!” he said in surprised awe.��

“It took me some time but I got it done for you, Wil.”��

“W���?” Wil asked.��

“Because I love to see you fly.”

“Oh, ok,” he called back to me … already nearly to the bottom of the hill.

When fueled by our why, no matter the timeline, we find a way to fly.��

by Marsha Chartrand

Marsha Johnson Chartrand, a founder, writer, and copy editor with the Manchester Mirror, is a 50-year resident of Manchester. She has a long history of volunteer and community involvement.