Stories of Wil: How big is a millimeter?

Wil as a three-year-old, working with parapro Theresa Herron.

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’s 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’s desire, in sharing these stories, is to promote an awareness, understanding, and appreciation of the amazing capabilities of individuals with Down syndrome.

Early animation was created millimeter-by-millimeter. To some, this is a tedious process — much too much work. Others enjoy the sinuous flow of the completed project, unaware of or unconcerned with the process behind the scenes. To the animator, however, the diligence, patience and love poured into every intricate detail has special meaning. Each development in the process, no matter how slight, contributes to the bigger picture. 

For Wil, getting dressed is an event. He may emerge from his bedroom decked out in grey and declare the day “Grey Power!” There was a “Red Day” when, you guessed it, he wore red from his hat down to his socks. Wil is equally excited about his blended color outfits, or his self-proclaimed “fancy” or “handsome” collared shirts — accurately meeting both descriptions.

Wil’s dexterity has not reached the point where he can tackle buttons on his own. Wil’s button-down shirts are hung in his closet with the top three buttons undone. That way he can maintain his independence by pulling the shirt over his head, only needing my help for those last few buttons. As I fasten the very top button, I ask, “Isn’t that too tight?”

“Ugh, mom, no!” Clearly, I do not know fashion. 

Wil’s teenaged response reels me back in time, as I often am, triggered by one of his words or actions. I’m reminded of all the still-frames in time pieced together, millimeter-by-millimeter, to create the moment we are standing in now. Such a typical scene, and yet, it’s not. 

I’m brought back to a 3-year-old Wil, his hair nearly white-blond and wispy. His voice light and sweet, with an upturned, cheerful innocence. Wil sits across the table from Ms. Theresa Herron (Wil’s speech therapist since he was a baby through his grade school years). Wil points at one of the flash cards laid on the table; upon each card a picture with a word describing it. Wil is learning how to pronounce the words on the cards. He’s also learning to make associations with the pictures as they are placed into a scenario. During each session, Wil and Theresa find something to giggle about. 

Theresa had an iPad set up on the table, which was an advanced concept at the time, and she videoed certain sessions. The videoed sessions, seen one at a time, may appear to be near repeats of Wil pointing at this, then Wil associating this with that. Progress made might be difficult to detect. However, if you chose to press the fast-forward button to view continuous sessions, you would enjoy a sinuous flow of Wil’s clear advances over time. 

Theresa and I were like the animators as we reviewed each session — we rejoiced in every millimeter of change. Theresa would note how Wil enunciated a word in a slightly different way, or how he made an association he hadn’t before. If he’d been experiencing a roadblock, she’d gather the information we had so far and indicate a new direction to move in. Our shared celebration of each session ran deep, as we both valued the magnitude of each millimeter.

More than 10 years later, Wil’s vocabulary has greatly expanded, thanks to the strong foundation of his early speech therapy days. Wil’s ability to communicate has been vital to his flourishing independence. Even Wil’s “Ugh, mom, no!” is so teenage-typical, and yet it’s not. We stand on a mountain of millimeters, special meaning built within every intricate layer, in this sinuous flow of life. 

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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.