Sadie at the salon

By Emily Urquhart  My three-year-old daughter, Sadie, was getting her hair cut at a new salon. This would be enough to set any parent on edge—the possibility of tantrums, a stranger wielding a sharp object near your child’s face—but I was most worried about the inevitable comments. My daughter has albinism, which means she has white-blonde hair, little pigment in her skin and has pale blue eyes. She has low vision, so facial expressions...

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Sister story: Daniel makes me who I am

By Anna Penner As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given. I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is. Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew used to...

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Star-studded 'Serenade' benefits Beverley School families

By Julie M. Green What does indie music have to do with children with special needs?  Toronto singer/songwriter Hayden Desser and his wife Christie Greyerbiehl worked tirelessly to marry the two for one extraordinary night last Saturday.  The result was Dream Serenade—a concert at Massey Hall to benefit children with developmental and physical disabilities at Beverley School in Toronto. The evening was spectacular, with...

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'There is something magical about this place'

By Louise Kinross Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school...

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Two BLOOM folks come to town

By Louise Kinross I met this amazing woman Helen Hoens (left) on Wednesday night. A year ago she stepped down as New Jersey State Supreme Court Justice, saying she developed the qualities essential in a judge by raising her son Charlie (right), who has severe autism. This afternoon she’s speaking on a parent panel at the Geneva Centre’s Autism 2014 conference in Toronto. You may remember this BLOOM piece she wrote for us.I met up with Helen and...

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Brother with disability dies from hospital neglect

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Can't wait for this one

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Pinpoints of light

By Louise Kinross In The Boy in the Moon, author Ian Brown uses the term 'pinpoints of light' to describe how moments of grace and love could relieve the dark parts of raising his son with disabilities. I had a few of those moments recently. One occurred yesterday when I was at a research conference. Someone I didn't recognize came up to me, smiled and said: "Are you Ben's mom?" "Why yes I am," I said, unable to place...

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BLOOM media roundup

Looking for a great read? Check out the disability and parenting stories we've collected in the last week. Let us know if we missed a good one! Louise To Siri, With Love The New York Times How a boy with autism becomes 'Best-Friends-Forever' with Apple's Siri. Why doctors need stories The New York Times 'Data are important, of course, but numbers sometimes imply an order to what is happening that can be misleading.' Where...

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Research neglects alarming obesity rates in disabled children

By Louise Kinross Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama. Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight...

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What do you think about 'slow code?'

Here Dr. Brian Goldman describes a "slow code" or "Hollywood code," when doctors are slow to respond to a "code blue" that signals a patient in cardiac arrest because they believe the intervention is futile.  "Slow code" is an example of the hospital slang Dr. Goldman, an emergency room doctor and CBC broadcaster, writes about in The Secret Language of Doctors. I posted this on our Parent Voices at Holland Bloorview Facebook group yesterday and there was a discussion about the ethics of not being upfront with families that a...

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An artist is born

By Kevin Vieira Whether sitting at the piano, strumming a guitar or drumming with whatever he can get his hands on, my son Joseph (above) makes music.Joseph is seven years old and has cerebral palsy. Joseph is also non-verbal (so far), yet he has a voice: a computer-generated voice that is produced in response to the words he selects or types into his computer.This technology that has become the greatest source of liberation for our son—liberating...

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Blogger tracks Toronto's disability-friendly spots

By Louise Kinross Silvia Guido blogs about Toronto restaurants, bars and music venues that meet her 30-item checklist for accessibility. The physiotherapist, who launched AccessTO in April 2013, just posted her 122nd review. She's supported by a team of volunteers. The blog grew out of complaints Silvia heard from patients about the limited number of places they could visit in Toronto. "I'd talk about going to a new restaurant and...

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The big picture

By Sandra Joy Stein The note announcing picture day came home in my son’s school folder. “Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitis—where the immune system attacks the brain—that we received medical clearance for him to participate in an educational program outside of hospital or home....

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