Maybe if I squint, reality will look different

By Louise Kinross It must have been because I had just made a mental note that things were going quite smoothly for my son with his post-high school transition and he was quite happy. It was that same night that I learned from a private physio that he had a curved spine. I had been trying for months, to no avail, to get someone in the adult system to see him due to concerns that he was walking with a crooked gait.In the last 24 hours he’s been...

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Rick's rant on Canada's 'war on kids with Down syndrome'

Don't miss Rick Mercer's take on Canada's plans to send a tenured university professor at York University back to Costa Rica because his son has Down syndrome. That's right, Felipe Montoya, who has lived in Toronto with his family for three years, has been denied permanent residency because of the potential 'burden' of his 13-year-old son Nico. "Surely to God we're not throwing children out of the country because they have Down syndrome?" asks...

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For parents of preemies, rehab is a confusing 'new world'

By Louise Kinross Children’s rehab is “a whole new world” fraught with stress and confusion for parents of preemies who are moving on from neonatal intensive care, according to new Holland Bloorview research. Based on interviews with 18 parents of preterm children with cerebral palsy, lead investigator Marilyn Ballantyne found parents commonly feel lost, unsure of what to expect or what services to ask for, and vulnerable. The goal of the...

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What does IQ have to do with stunting a child's growth?

By Louise Kinross You may have seen this story about parents who choose to medically halt the growth of their children with severe disabilities through surgery and hormone treatment. It's in this weekend's issue of the New York Times Magazine. The argument for the treatment is that a child who remains child-sized can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller,...

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Suicide, epilepsy drive early deaths in people with autism

By Louise Kinross People with autism die decades earlier than the general population according to a disturbing study from Sweden.The study, published in the British Journal of Psychiatry, found people with autism die on average 18 years earlier than peers without the condition. The study showed people with autism and intellectual disability die a shocking 30 years earlier, at about age 39. For people with autism alone, the main cause of death...

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Ride the 'short bus' and meet five unforgettable kids

By Louise Kinross  Precious Cargo is a memoir by Craig Davidson about his year driving a school bus of students with disabilities—the iconic “short bus.” Craig, the author of Cataract City and a series of horror novels, took the job to make some money when his writing career fizzled. But he soon found himself struck by the unique characters of the five teens on his bus and his evolving relationship with them. “The way...

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Single mom embraces 'life of triage' with autistic boys

By Louise Kinross Please check out the latest in our A Family Like Mine series! Susan Cosgrove is a single mom to three children, including Liam and Phoenix, who have autism, and their sister Kaya. "I call us the travelling circus," Susan says. "We're a commotion. Everywhere we go, noise follows us, and chaos follows us. And we definitely tend to be the centre of attention wherever we are. Autism is an invisible disability. So when people look at the boys, they don't immediately see autism." Watch how Susan balances the needs of her boys...

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Troubling message in Italian ad for Down Syndrome Day

By Louise Kinross Saatchi & Saatchi New York launched this ad yesterday for Italy's CoorDown, a national organization representing people with Down syndrome.   The ad features American actress and model Olivia Wilde looking in the mirror while a woman narrates: "This is how I see myself. I see myself as a daughter, a sister and a best friend...as a person you can rely on." We see images of Olivia Wilde living her life, at work and play. "I see myself meeting someone that I can share my life with. I see myself as an ordinary person...

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A researcher copes with the fragility of his daughter's life

By Louise Kinross Pierre Duez is a computer engineer who works in the Prism Lab at the Bloorview Research Institute. He supports students who are developing algorithms for processing signals that are the basis for switches in access devices. After the student creates the algorithm, Pierre does the programming to turn it into a device “that a child can use as their pathway to engage with the world,” he says. For example, the hummer is a...

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BLOOM media roundup

By Louise Kinross  I recently received some amazing photos from the Ravn family and couldn't resist sharing one. Eric, the Bumblebee transformer on the right, was an inpatient here following a stroke several years ago. Last week I was part of a research team here at Holland Bloorview that presented our findings on a six-week narrative training group for our inpatient nurses. The group met for 90-minute sessions to read and discuss...

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Part 2 of Global News story on home nursing airs tonight

BLOOM contributor Marcy White was featured in a Global news story last night about her inability to get consistent, competent nurses to care for her son Jacob, who has complex medical problems, at night. You may recognize the adorable Kian in the picture above. He and his mom Samadhi Mora Severino also participated in the story. Marcy wrote an earlier piece for BLOOM on the topic: Home nursing is not respite for this mom. Global plans to air...

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Mailbag: A reader responds to a post on disability, friendship

By Louise Kinross A couple of weeks ago Meriah Main, a nurse in Vancouver, responded to a piece I wrote on friendship and youth with disabilities in the Huffington Post about four years ago (it generated over 650 comments, but the comments are no longer visible on the website). I wanted to share her response and our correspondence as I think it will interest you. Meriah is pictured above (centre) with her husband Gabe and their roommate Ariel....

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Cats, cats, cats!

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What's new?

By Louise Kinross This is a photo of my son with "Betty" at a volunteer job he does at an adoption centre for cats. He loves it! He has a whole bunch of tasks that he works through. Cleaning cages, sweeping, feeding, brushing, socializing. He's waiting to handle his first "adoption." What's new with you? Here are some stories you may be interested in. When doctors should say I don't know The Atlantic Fascinating...

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