Chris Turner on raising a child with special needs
Calgary writer talks about charting his own path for his son's treatment
When Chris Turner and his wife, Ashley Bristowe, welcomed their son Alexander into the world — they both knew something wasn't right.
He had a heart murmur and his ears had strange folds on them.
It wasn't until a few months later that they discovered Alexander had a rare genetic disorder called Kleefstra syndrome.
"Every single gene in Alexander's body is missing this tiny little pea. There's this little tiny deletion in one particular part of the gene," Turner told the Calgary Eyeopener on Tuesday morning.
The Calgary writer was not sure how the disease would manifest itself in his son.
But it did mean Alexander would be developmentally delayed in speech, movement and learning.
Turner has written extensively about his experience raising a special needs child in the June edition of Reader's Digest.
While doctors, nurses and therapists at Alberta Children's Hospital in Calgary were doing the best they could for Alexander, Turner felt they were "massively overworked."
He and Bristowe tried to be patient, but that all changed the night Alexander's big sister made him laugh for the first time.
"There's a conscious human being in there who can laugh, who can get a joke. Who can understand joy. We have to figure out how to unlock that," said Turner.
From that moment on, Turner and his wife began forging their own path of treatment for Alexander.
They took him to the Institute for Achievement of Human Potential in Philadelphia, a clinic Turners says has an "aggressive" approach to child therapy.
"They've been working with this idea of neuroplaticity for a half a century now. So basically the idea that brains can be taught to do new things. They are malleable and muscles that change through use."
Turner says the clinic showed him there is no "absolute limit" to his son's ability to learn and grow — and that's something he would like Alberta's health-care system to take note of.
"They wanted to sit back, see how he'd progress and start treating him more intensively in a couple of years," he said.
Turner says that's an "upside down" approach to kids with disabilities. He says the province's health-care system needs to throw as many resources at them, as soon possible.
"The better off they're going to be. The better off society is going to be, because we're going to have capable kids instead of kids that need permanent care."