'We are failing them all': A mother's fight for people to understand children with disabilities

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A Calgary woman whose son was born with a rare genetic condition that doctors predicted would leave him severely disabled says she never imagined her child would defy the odds the way he has.

"Alexander's prognosis was so dire that the thing that I felt I could, you know, reach furthest for, and maybe accomplish, was hoping that he could learn to read," Ashley Bristowe told The Current's Matt Galloway.

"They said he would probably never walk, and certainly never talk. And, I mean, he'd blown past all of the predictions and all of the best case scenarios by the time he was three."

Eight months after Bristowe and her husband Chris Turner welcomed their second child, Alexander, into the world in May 2009, they discovered he had what's now known as Kleefstra syndrome. It's characterized by heart abnormalities, ear folds, hernias and a range of developmental disabilities. 

At the time, Alexander was only the 72nd person to be diagnosed with the condition worldwide — and it set Bristowe on a path to give her son the best life possible. 

She chronicles that journey, and her fight to have others recognize Alexander's humanity, in her new memoir, My Own Blood.

Finding support

Following Alexander's diagnosis, Bristowe learned about a group of non-profit organizations in Philadelphia called The Institutes, which develop programs to help children reach their potential.

She packed up her family and went down to the States to start a personalized program that would help her son.

During the trip, Bristowe met a young boy who was highly disabled and unable to communicate through verbal language. But with the help of his mother, the boy showed he could do math, read and analyze high-level language by pointing to cards with letters and numbers on them.

It "shattered" Bristowe's world.

At that moment, she realized there was a child "trapped" in that boy's body.

"Disabled children are prisoners of bodies and brains that won't obey them," she writes in her memoir. "We are failing them all."

Barriers to services 'weed people out'

Even though Bristowe comes from a privileged background and felt resolved to fight for the help son needed, she said she still had to "chop down the door like a crazed maniac wielding [an] axe" to navigate barriers to getting help for her son.

She said the bureaucracy of the health-care and education systems, for example, often push people away from the services they need.

"We live in a very ableist society," she explained. 

"The barriers to access are meant to weed people out, and what it means is anybody who doesn't have all those advantages or some kind of crazed drive … [gets] weeded out."

That means children with disabilities don't get the services they need, or they end up in school systems without support, she said.

"The way we've decided to address disability in Canada is to put it on wait lists, put it last, cut it first," Bristowe said. 

But with the right therapy and support, her son has been able to grow into a 12-year-old who walks, talks, reads, swims in the ocean on his own, and loves music by Icelandic singer Bjork.

Last year, Bristowe even took Alexander on a cross-country trip in an old camper truck. She said he kept a travel journal and threw rocks in lakes all the way from Saskatchewan to northern Ontario.

"His language is amazing. And he's obviously not a quote-unquote normal little kid, but he's a delight," Bristowe said. 

"He's a lovely force in the world." 

Written by Kirsten Fenn. Produced by Alison Masemann.

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