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Friday, February 27, 2015
Thursday, February 26, 2015
What's in a name?
By Louise KinrossIt seemed a simple exercise. I was at Columbia University doing a a course for clinicians and writers on narrative medicine. In our small group, we were asked to write for five minutes on this prompt: “How did you get your name?”Then we went around the table and read out our pieces. The stories that emerged were complex, powerful and in many cases deeply painful. Often times a person had been named in memory of a relative—but...
Tuesday, February 24, 2015
My epic parenting fail
By Louise Kinross
I’m often sent story pitches for what strike me as ridiculous products that in no way relate to parenting, let alone parenting children with disabilities—but which perhaps tell us something about our culture. Case in point. This morning I got an e-mail suggesting a story about the Beebo—a rotating bottle holder you place on your chest while feeding so that your hands are free to read to your newborn (or accomplish...
Sunday, February 22, 2015
For Hanzhen, life is in the detail
By Louise Kinross
Hanzhen Yap is a 16-year-old Malaysian artist with autism whose intricate sketches of historical buildings, animals and everyday objects have been shown in 27 exhibitions. He lives in Johor Bahru. For our interview below, Hanzhen's parents read him our questions. “For questions that he doesn't answer frequently, Hanzhen struggles to find the words,” says his mother Yvonne. His parents have elaborated on some...
Friday, February 20, 2015
Every kid deserves a pair of jeans
By Megan JonesIn the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim. Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him...
Wednesday, February 18, 2015
Take a look, then look again
By Louise Kinross
Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions.
Hanzhen has autism, and his parents taught him to speak and...
Tuesday, February 17, 2015
Connect2care puts your child's health record at your fingertips
By Louise Kinross
Becky Quinlan (top right) can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments and what’s pending, and it keeps me more organized.”She also loves having Jack’s clinical reports at...
Thursday, February 12, 2015
Son's death sparks a search for justice
By Louise Kinross
In 2013 Connor Sparrowhawk (with sister Rosie) drowned in a bath alone in a National Health Services assessment and treatment unit in Oxfordshire, England. The 18-year-old had autism, epilepsy and intellectual disability (referred to as learning disability in the UK). The NHS trust that ran the unit initially attributed his death to natural causes—but his parents called for an independent investigation that found his death preventable....
Tuesday, February 10, 2015
Julia knows firsthand that every family is unique
Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."BLOOM: What does your experience as a parent of a child with disability add to your role here? Julia...
Monday, February 9, 2015
How baby went from 'alien creature' to 'our son'
By Louise Kinross
‘Our Curse’ tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without the support of a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, is nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times.Leo’s syndrome is known as Ondine’s Curse—or Congenital Central Hypoventilation Syndrome...
Sunday, February 8, 2015
A doll like me
By Louise Kinross
This is Katie Hebert with her doll with a stomach feeding tube and brother Nathan. "We heated up a skewer and used it to melt a hole in the doll's stomach and then just placed the tube as usual," says mom Kyla. "The kids thought the 'operation' was so cool."
Katie has suspected mitochondrial disease and her family in Texas has adapted her dolls to be like her. I received Katie's photos, and many from other families, after...
Friday, February 6, 2015
Get your kid active at Variety Village
By Louise Kinross
Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families...
Thursday, February 5, 2015
Disability is part of their doll's story
By Louise Kinross
In January I wrote about Melissa Shang, a girl who at age 10 got 150,000 people to sign a petition asking American Girl to release a doll with a disability. Melissa has a form of muscular dystrophy. The company hasn't.
Then I heard from the Pots family in St. Catharines, outside Toronto. Pictured above are Emily, Sophia, Rachel and Janneke. Rachel and Janneke both use wheelchairs now and have global...
Tuesday, February 3, 2015
BLOOM media roundup
Looking for an interesting read? Check out the disability and parenting stories we've collected recently.
But first, I'd like to introduce you to Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with Jillian Peters). You can get a unique window into Julia's first few weeks at the hospital on her blog or follow her on Twitter @Hanigsberg. Julia comes to us from Ryerson University, where she was vice-president...
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