At five years old, Ethan Hasey seemed like a regular, healthy young boy.
His parents were teaching him how to read, but noticed he’d often make a deep guttural sound in his throat. His body also moved a lot, with Ethan squeezing his hands.
“He just couldn’t stay still. Lots of little kids can’t stay still,” said his mother Andrea, noting the noises continued during the next couple of years. “A lot of the times they were sort of rude sounds…I was just thinking stop making those noises.”
It wasn’t until Ethan was in Grade 2 that a teacher asked Andrea whether her son has Tourette Syndrome (TS) — a neurodevelopmental or brain-based genetic condition that causes people to make sudden involuntary sounds and movements called tics.
Simple motor tics include eye blinking, lip-licking, shoulder shrugging and head jerking, while complex ones have people jumping, spinning around or exhibiting inappropriate or taboo gestures.
Those with simple vocal tics will often sniffle, grunt, utter single syllables or hum. More complex cases involve the repetition of a phrase or words, and uttering obscenities or socially taboo phrases. Withholding or suppressing a tic is like holding in a sneeze or trying not to scratch an insect bite.
Ethan was eight years old when he was officially diagnosed with TS — the most common age for diagnosis of the condition. Eighty-five per cent of kids with TS will also have another neurological behavioural condition. Adding to an already difficult road ahead, Ethan was also diagnosed with ADHA, OCD and a sleep disorder.
Being in school for Ethan was a struggle. He was bullied by his classmates and had trouble focusing, prompting his parents to place him in a small independent school where he remained for a few years before he was home schooled. A typical classroom setting had simply become too overwhelming.
“We found that he’s such a smart kid but in school he’s really not managing with the environment,” said Andrea, noting Ethan, now 16, takes a science class at a local high school, but still studies at home.
The tics are still there, but they’ve become more subtle. It’s the associated conditions, notes Andrea, that will continue to pose the biggest challenge.
“He’s just a kid who can’t handle being in crowded busy places for as much time as other people.”
As a parent, realizing her child was going to walk a harder road than others came with a bit of a grieving process. But Ethan has proven he can succeed, often boasting grades in the 90s.
With about one per cent of the population diagnosed with TS, members of the Victoria chapter of Tourette Canada spend much time going to schools, educating others about the syndrome. They also provide support and activities for those struggling to live with TS, which has no cure but can be managed with behavioural therapy and medication.
On Sunday, March 26, the ninth annual Trek for Tourette will take place along Dallas Road to raise awareness and support for Tourette Canada. Participants will meet for the five kilometre walk at 1 p.m. at the bottom of Cook Street on Dallas Road.
For more information visit tourette.ca/trek or email victoriachapter@tourette.ca.