"I did it myself!"
Julian loves school, reading and geography. And like many other 10-year-old boys, he's crazy about soccer. Julian, his dad and older brother share a passion for watching Italian league games on TV. Julian's dream is to be a big league soccer coach with his older brother on his team – finally taking orders from him.
He'd be the first major coach in a wheelchair. Julian has severe cerebral palsy, and spasticity which leave him unable to control any part of his body. This means he can't do even the simplest task independently, including using a computer mouse, a TV remote or turning the page of an e-book. And, while he can speak, his large vocabulary is hard to understand for those who don't know him well.
This was an immense source of frustration for Julian and heartache for his family.
When Julian was in grade one, his occupational therapist referred him to Holland Bloorview's Communications and Writing Aids program. This unit matches kids with existing devices. But nothing worked for Julian. His only hope was finding something that didn't exist yet.
That's where the Bloorview Research Institute came in. Dr. Tom Chau and his team worked with Julian for four years. Finally, there was a breakthrough: a 'throat switch' was developed for Julian. In situations where others would click a mouse or press a touchscreen button, Julian simply has to hum.
For the first time, Julian was able to do something completely on his own: turn the page in an e-book. He was delighted. Next, staff at Holland Bloorview showed Julian new software that finally allows Julian to write on his own, humming to select the words he wants. The computer can also voice Julian's selections allowing him to 'speak' through the computer and be understood by classmates and new acquaintances.
Recently, Julian came home from school, proudly calling out, "Mom, look what I did all by myself!" He produced a page of sentences he'd created on his own. It was a day his mom will never forget.
Most parents remember such a milestone: like a child writing his own name. But, as his mom points out, "the difference is, most children reach that milestone on their own. But without Holland Bloorview, Julian would never have been able to say 'I did that by myself'."
Julian's mom is excited about the possibilities for Julian's future. She imagines him writing a novel, or doing his Master's in bio-mechanical engineering. Most of all, she looks forward to new independence for her son, and for him to feel happy and successful on his own terms.
But Julian's still holding out for soccer coach.
