Adam has a rare disease that destroys his muscles: he can’t breathe without a ventilator, is unable to speak and can’t move.

But his eyes can reliably blink ‘yes,’ he can move them side-to-side to say ‘no’ and the skin under his eyes crinkles when he enjoys a hearty laugh.

For years, Adam — a long-term patient at Bloorview — has expressed his caring, thoughtful nature through his eyes.

“If Adam and I were putting up decorations for Halloween, Adam would look over at his roommate Ali’s bed, as if to say: “Do you want to put some up?” recalls Kim McFarlane, a recreation therapist.

A year ago, in a bid to expand Adam’s self-expression, Bloorview’s augmentative communication team harnessed the power of the only hand movement Adam has: a tiny bend of his left thumb.

A talking machine was mounted on his wheelchair and his hand was positioned so his thumb could hit a switch to activate words represented by pictures on the screen.

Adam, 17, now delights in calling out Ali’s name, and waiting for Ali’s trademark ‘happy noise’ — a raspy laugh that fills their complex-care room with joy.

When Adam wants in on a conversation with his nurses, he repeatedly hits “I’m ignored, I’m ignored” until someone pays attention.

“Adam loves visiting with people and one-on-one interaction,” Kim says.

While he was lukewarm to a communication book others controlled by pointing to pictures and waiting for his ‘yes’ or ‘no’ eye movements, Adam quickly memorized the location of words in the talking device and painstakingly scans through multiple pages of 25 words each until he comes to what he needs.

Now, instead of others guessing what he wants, Adam can be specific — asking to have his vent suctioned or to be told the score in the hockey game.

“He loves attention, has a great sense of humour, and this enables him to express what he wants and have a better sense of control,” says Aicam Chuong, one of Adam’s nurses.

When asked what his favourite movie is, Adam quickly scans to his movies page, and clicks on Big Momma’s House. He says he loves hockey and music, but does not like the Raptors.

“Adam sets a great example for other kids,” Kim says. “To not have a mode of communication, and to then adapt to this device — it really shows Adam’s resiliency.”

 

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