Bon voyage

Hello dear readers: I will be on holiday until August 1. We are taking a "staycation," but hope to rent or purchase some kayaks so we can at least get some time on the water locally. I may post a couple of updates during our break. In the meantime, let us know what you have planned for the summer. Have fun! Lou...

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Does disability make you a less worthy transplant recipient?

Two little girls with genetic conditions that include intellectual disability needed a life-saving organ transplant.One, in Philadelphia, needed a kidney. The other, in Chicago, needed a heart.The first, three-year-old Amelia Rivera with Wolf-Hirschhorn Syndrome, was turned down for a kidney transplant in 2012 because of her ‘mental retardation,’ according to her parents. “She is not eligible because of her quality of life—because of her...

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The wave

 Remember that quote: "Enjoy the little things, for one day you may look back and realize they were the big things?" Well, here's one of my little things. Last night we were at Variety Village, the sports club adapted for people with and without disabilities. Ben was riding a bike around the track at a very leisurely, almost snail-like pace while my hubby (and I, very briefly) ran. I was thrilled when I saw an old school friend...

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Everything you want to know about siblings

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness. Anjet, 38, grew up with an older brother Jalbert, who was born with a visual disability and autism due to exposure to a parasitic infection during his mother’s pregnancy. In her book, Anjet interviews 36 siblings aged six to 69. Her goal is to let...

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Know the Night is about a mother's isolation

Maria Mutch is awake. It’s 3 a.m., or maybe 4, she’s not sure—she can barely tell the difference anymore. She wanders the halls of her house slowly, quietly. While the rest of her family sleeps, Maria is a ghost. There’s no point in going back to bed. Any minute now, she anticipates that her eldest son Gabriel, who was born with Down syndrome and later diagnosed with autism, will wake up and begin his nightly babbling. Gabriel is non-verbal and...

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The balancing act: Children's rehab is about truth and hope

Dr. Anne Kawamura is a developmental pediatrician in Holland Bloorview’s child development program, working with children with cerebral palsy, autism and other developmental delays. She was hired 10 years ago after completing her fellowship in developmental pediatrics here. In addition to her clinical work, Anne directs the University of Toronto program for pediatricians who train for two years to become specialists in working with children with...

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This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient. Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients. “Holland Bloorview was like a lifeline when we were here,”...

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This hospital trains and hires students with disabilities

Project Search partners with businesses, schools and community agencies to run nine-month skills training programs for high school students with intellectual disabilities. In 2013, the project, which began at Cincinnati Children's Hospital 18 years ago, had grown to include 285 business sites worldwide and 69 per cent of graduates that year got jobs. The project trains students in complex but routine jobs from sterilizing surgical equipment...

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Mice are key players in study of autism drugs

By Louise Kinross Holland Bloorview and SickKids have received $2.5 million from Brain Canada to conduct a five-year trial of new autism medicines in children and mice.Testing drugs at the same time in humans and mice has produced promising results in cancer treatments and is a first for autism research. Identifying the genetic change that causes a specific type of autism can predict whether it will respond to treatment. But “there are too many...

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Shattered dreams

By Louise Kinross A few things collided in my mind this morning. First I read this exquisite essay by Michael Bérubé about his son Jamie’s search for work. Jamie, 22, has Down syndrome. He’s also a “bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages…” writes his dad. Bérubé peppers his piece with vivid images...

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Filmmaker Kelly O'Brien on grief, siblings and honesty

A recent BLOOM night focused on filmmaker Kelly O'Brien and a screening of Softening, her film about raising her son Teddy, who was born with brain damage and a grim prognosis.  Softening is a candid story about a mother's love and pain, a sister's magical bond, a father's joy and devotion and a little boy's experience of the world. This Youtube clip is a portion of an interview we did with Kelly following the film.  A condensed version of Softening that focuses on Teddy and his sister Emma was posted on The New York Times. Thank...

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A refuge for parents caring for kids in hospital

Once a week Claire Stoten sits on a meditation cushion and focuses on her breathing. “It forces me to stop doing all of the jobs—the organizing, e-mails, research and care for my son,” she says, sitting in her son Felix’s inpatient room at Holland Bloorview. Felix, 13, who has a neuromuscular condition, had a 10-hour surgery to fuse his spine at the end of March. Prior to that his spine was so curved he couldn’t sit up, his mother says. For the...

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