For North Vancouver 11-year-old Kyle Cooney, the bracelets that he and his family are selling are so much more than mere pieces of jewelry.
They are self-regulating aids, and tools to help Kyle navigate serious challenges on his way to adulthood. They are a source of necessary income, and a source of invaluable pride. They raise awareness, and raise funds, for worthwhile causes. They tell his life story, and show others facing similar challenges what is possible. They aren’t just links that go around a wrist. They are links connecting Kyle to the world.
And they look pretty cool too.
Kyle Cooney was born with a trio of troubles: he has CHARGE syndrome, an extremely complex genetic syndrome involving extensive medical and physical difficulties that differ from child to child; he has autism spectrum disorder, and he is deaf.
CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, and ear abnormalities. Kyle spent the first four months of his life in the neonatal intensive care unit, and the first eight years of his life being fed solely through a feeding tube in his stomach.
“There’s always challenges, always appointments,” says his mom, Liz Cooney. “With CHARGE syndrome you just don’t know what will come up – you’re just managing it day by day.”
When COVID-19 hit, Kyle struggled adjusting to learning at home, missing the support offered at his school, the B.C. Provincial School for the Deaf in Burnaby.
“I couldn’t really help him with school, and he doesn’t like Zoom,” Liz says. “It was frustrating.”
One day Liz and Kyle were looking through some cherished family photos and the idea of drawing on those images to create some sort of art project was born. The photos and stories associated with them became the colour palette for some beaded gemstone bracelets, designed to tell the story of Kyle’s life. The act of creating the bracelets was an important one for Kyle as he adjusted to pandemic life at home, says Liz.
“It’s evolved his life skills. He’s learning how to count, he’s learning how to be focused. He enjoys stringing the beads, the different colours, the creativity, all that.”
Self-regulation is an important tool for everyone to have, but in particular for people with autism spectrum disorder. Making the bracelets is a great way for Kyle to control his body and focus his mind, says Liz.
“It's very quiet, it's focused,” she says. “He has a magnifying lamp light, and it's repetitive. I think anything repetitive is very good for kids to self-regulate. We're very into mindfulness right now, like being aware of ‘this is what I'm doing,’ and there's nothing busy like a screen, you’re just focusing on each bead, and you have to put it on. I think that's the behaviour that's promoting that self-regulation, because it's repetitive, and it relaxes him, and he's focused.”
Kyle and Liz were happy with how the bracelets were turning out and wondered if they could possibly start selling them. They asked a few friends and family members, and got a very good response.
Their big break, however, came when they showed the bracelets to Jamie and Connie Fay, owners of Lynn Valley’s End of the Line General Store, and asked if the store might be interested in selling them.
“Jamie, without hesitation, said ‘Yes! We’re going to put it in our store,'” says Liz. “I’m so super grateful to End of the Line, because they changed everything. … It really made a big difference in Kyle’s life.”
Kyle’s father, Ron Cooney, made a display stand for the bracelets and, all of a sudden, Kyle was in the business of selling bracelets to the public. It was a massive milestone, says Liz.
“Socializing with people, going to the store, counting the stock, realizing that this is work – that’s big,” says Liz. “End of the Line gave this big break to Kyle, not just to earn money but to actually have a dignified life.”
The fact that Kyle is being introduced to the world of work, in a small yet meaningful way, is huge for the family, says Liz, adding that worrying about the future is a major source of stress for parents whose children have disabilities.
“Every parent has fears or uncertainties: are they going to be independent? Are they going to be able to work? Right now, Kyle is only 11 and he is learning all these simple life skills and it really helps him get to know people in the community, which is really big for him.”
The Cooneys have since branched out to sell their bracelets at a store in Port Moody, as well as periodically at the Shipyards Night Market and Lonsdale Quay. Kyle has already sold approximately 270 bracelets, and will be looking to push that total higher when he along with friends and family members set up a booth in the common area at Lonsdale Quay Market, Dec. 11 and 12.
Most of the funds raised – the bracelets sell for $29.95 – go to Kyle’s Registered Disability Savings Plan, which will help support him in adulthood. The family, however, also makes donations with the profits, including a shipment of baby food, diapers and other goods that they recently personally delivered to the Archway Food Bank in Abbotsford to help flood victims.
Aside from raising funds, Liz is hoping that this project will help raise awareness about the challenges some children face and, more importantly, provide inspiration for other kids to help them achieve their goals.
“I think this is a message we want to send to the community, to society. There are tons of kids like Kyle, and they should just give them a chance,” says Liz, adding that the bracelet campaign has already brought them in contact with many other families working hard to help their children achieve their potential.
“Kyle has so many issues: he’s deaf, he has autism, and he has CHARGE syndrome,” says Liz. “All those three groups have connected with us. It’s really amazing. You can really feel how open and deeply connected the parents are when they see some inspiration. They open up to us, and I think that’s the beauty of [the bracelet campaign]. It’s always something positive.”
Visit the Kyle’s Kiosk website for more information about Kyle and his bracelet campaign.