Summer camp for kids who share the same speech disorder

Published Aug. 11, 2021 5:56 p.m. ET
Updated Aug. 11, 2021 10:52 p.m. ET

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CALGARY -- The best way to understand Apraxia might be to compare it to a dream where you are trying to talk to someone or yell for help but no words come out.

Children with the rare motor speech disorder can hear and understand others but when they try to communicate the signal from their brain gets mixed up by the muscles in their lips, tongues and cheeks, according to speech language pathologist Kailey Leonard who is working with the kids at camp.

"Speech is really complex and we take for granted how easy speech comes for most people," said Leonard. "But for kids with Apraxia their mouths don't move the way their brain are telling them to move."

She says these kids typically spend a lot of time with therapists working on their speech so camp is more about fun than work.

"This is just a place where they get to come and hang out with other kids who have similar challenges and we just have fun," said Leonard. "We might incidentally do some things like work on pronouns, or emphasize some speech but for the most part it's all about having fun."


Brenda Jones is the camp coordinator and says this year's camp runs for five weeks with kids from three years old up to ten. She's impressed with how the kids interact and communicate that wouldn't normally talk in front of others, especially when it comes to instructions.

"They would rather hear it from their friend than an adult," said Jones. "So it's been great when we have one that doesn't understand, they're like just saying this and we're like cool thanks for explaining the story and they'll finish the story for their friend instead of for us so it's been great that way."

Heather Mack's six-year-old son Sam was diagnosed at 18 months. Most parents don't find out about the rare disorder until their kids are three. Mack says when the camp was cancelled in the summer of 2020 it was hard on everyone.

"It was so rough especially because a lot of therapies don't go throughout the summer," said Mack. "So even though this isn't individual speech therapy there's still a lot of speech, language activities and honestly as a parent we're quite burned out by the end of the day so we don't want to do that role too, so yeah we desperately missed it."

The camp was founded in 2016 by Natasha Kostenuk whose 10-year-old son Fox has Apraxia. When she tried other summer camps she found then five-year-old Fox didn't communicate with kids his age and that didn't make his experience enjoyable. She learned other parents had similar experiences with their Apraxia children, so she decided to do something about it and started the camp.

"In the first year we just ran two weeks and had about 10 or 11 kids," said Kostenuk. "This year we have over 60 kids at camp, we're completely full, it's just fantastic to see how it's grown."

Now she's looking at bumping up the age at next year's camp for 11 and 12-year-olds.

Learn more about the Apraxia camp

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