How 'I became more than the kid in the wheelchair'

By Louise KinrossMax Setka, 21, is in his second year studying journalism and history at Trent University in Peterborough, Ont. Max has a long history with Holland Bloorview as he was part of our integrated kindergarten program. We spoke about what it was like for him to transition to university with a physical disability. BLOOM: What is your disability and how does it affect you? Max Setka: I have arthrogryposis, and it mainly affects my legs....

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Doctors' disbelief is a common response to rare disease

By Louise Kinross Laura Howson-Strong is an occupational therapist at Holland Bloorview who has worked with children with disabilities at two ends of the spectrum: as preschoolers readying for kindergarten at our nursery schools, and as teens preparing for transition to adulthood. At a Schwartz Rounds last year, Laura shared what it was like to work with our families given her personal experience with rare disease. As a child, Laura had pain...

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Sadie opened my eyes to reading bias: Audiobooks don't count

By Emily Urquhart Last week, I encouraged my daughter, Sadie, 7, to cheat at school. At least she saw it that way. I’d suggested that during independent reading period she might occasionally listen to an audiobook rather than sight read. Sadie has low vision but is not a braille reader, so she uses devices like a dome magnifier, an iPad, or a closed-circuit television (CCTV) to read regular-sized print. Sometimes, if the font is oversized...

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Family fund is a lifeline, but demand outstrips supply

By Louise KinrossAnyone who knows Geoffrey Feldman knows that he's an extraordinary parent.“I'm not a typical dad,” he says with a chuckle. At 76, Geoffrey's raising his 16-year-old daughter Isabelle, who has a rare genetic condition, on his own.  “Having a special-needs child is extremely expensive,” he says. “If I wasn't working on a contract right now, I'd be finding it hard to make ends meet.” Since 2011, Geoffrey and Isabelle...

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Families find few options for future planning

Photo from White Coat, Black ArtBy Louise KinrossA couple of things converged on my screen this weekend about how families find, or to be more specific “don’t find,” housing and services for their adult children with intellectual disabilities.First there was this podcast on CBC’s White Coat, Black Art, about a family whose 18-year-old daughter with severe autism is aging out of the pediatric system. “A day with Gilly, a teen with autism...

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While cute, Gerber's baby unlikely to prompt major social change

By Louise KinrossCBC’s The Current ran an interesting series of interviews this morning about Down syndrome and some of the conflicting messages we hear about it.The host noted that Gerber’s new ad campaign (above)—where they named a child with Down syndrome as their Gerber Baby for 2018—comes at a time when genetic testing is more sophisticated and most women terminate when they receive a prenatal diagnosis of Down syndrome.David Perry...

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A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first...

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Carrying friend in backpack, next stop China

By Louise KinrossIn 2016 we told you about Kevan Chandler's trip to Europe with friends who carried him in a modified backpack when places wouldn't accommodate his wheelchair. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy and weighs about 65 lbs. Sitting in an adapted child carrier worn by his friends, Kevan and the group hopped over stiles in the British countryside, climbed up 600 rock steps to an Irish monastery,...

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New hub to address developmental disabilities, mental illness

By Louise KinrossThe Azrieli Foundation has given $10.4-million to the Centre for Addiction and Mental Health to create the first centre in Canada to support adults with disabilities like autism and Down syndrome who also have mental illness.“A lot of us have anxiety and depression,” said autistic advocate Daniel Share-Strom at an announcement at CAMH today. “Why wouldn’t we?”Daniel described his world growing up as one where the speed and...

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'It's nice to know we're not alone'

Photo by Rachel FriesenBy Louise Kinross Rachel Martens is hosting a CP-Net webinar on Thurs. Feb. 8 from 12-1 p.m. called Finding Community: Social Media for Families of Children with Disabilities. Rachel, who lives in Calgary, is mom to Luke, 11, who has mosaic trisomy 22, cerebral palsy and autism. She is also a family engagement facilitator for CanChild’s Facebook group Parents Partnering in Research. I met Rachel at a conference and...

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