Ian Brown on The case for imperfection

The Boy in the Moon author Ian Brown gave a brilliant talk at Holland Bloorview last week. He captivated everyone. You must check out this short clip. I am off for three weeks and one of the places I'm visiting is the L'Arche community that Ian speaks about in France. My student Megan will be covering for me while I'm gone. Happy summer! Loui...

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Single parenting in the world of disability

 Maria Niembro talks candidly about the challenges of raising her son Francesco, 7, as a single parent and offers practical advice for other parents flying 'solo.' Maria is a member of Holland Bloorview's family advisory. Thanks Maria...

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RARE gives voice to people with Down syndrome

  Canadian playwright Judith Thompson’s RARE debuts on July 5 as part of the Toronto Fringe Festival. The play stars nine adult actors with Down syndrome. Through a montage of monologues, members of the ensemble tell their stories in their own words. While Judith helped to curate and fine-tune their work, the play was mostly written by its performers. BLOOM spoke with Judith about the production process, and what audiences can expect. Photo...

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Busted

What do you do if you and your partner disagree on how to handle an issue with your child? Let's say it's an issue that rankles, so one day you bring it up at a meeting with a social worker you're seeing for your child. And the therapist pretty much sides with your partner and even suggests that it would be helpful for you to get therapy (which you've already had lots of). She asks you if you were to let go of...

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Mom backs real blended food for tube-fed tot

By Jennifer Han My twins Andrew and Eleanor were 28-week preemies. Andrew came home from the hospital with three stomach surgeries under his belt and significant brain damage. The brain damage caused cerebral palsy and epilepsy, which put him at risk of aspirating and made feeding difficult. At 21 months he had a fourth surgery to place a G-tube to ensure he was getting nutrition safely and in hopes...

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How to write 'the whole truth'

Author, teacher and editor Kate Hopper has dedicated most of her creative energy to one thing: motherhood. The Minnesota mother has written extensively about the topic – the good sides and the bad – for years. Now, she wants to help others do the same. Kate teaches a class called Motherhood & Words, in which mothers learn to relay their experiences through creative non-fiction. This spring, Kate also released a book called...

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Off in a corner

A dozen Ontario children who use mobility devices such as wheelchairs or walkers mapped their movement so that researchers at the Bloorview Research Institute could assess the accessibility of their homes, schools and neighbourhoods. Tablet PCs with Camtasia software were used to sketch the layout of their classrooms and illustrate some of the barriers they face (see example in video). The researchers built on these findings by surveying about 600 school-aged Ontario children with mobility disabilities to identify barriers and possible...

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Getaways!

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An update on Kate!

You heard about Kate when her mother Julie Drury, above, wrote about a new complex care program at the Children's Hospital of Eastern Ontario (CHEO) that she was benefiting from. Here's an update on Kate from CHEO....

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What do you see?

Last month I gave a presentation to medical and research students in the Bloorview Research Institute called What do you see? In a nutshell, it was about how Ben was seen medically vs. how I saw him, and how important the parent picture is for kids who can't communicate conventionally. I encouraged the students to keep their minds open and flexible and always be examining their stereotypes and preconceptions. If...

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More about Pauline

A couple of weeks ago we ran an interview with Rick Guidotti of Positive Exposure. Rick – a photographer who used to shoot the world's top models for companies like L’Oreal and Yves Saint Laurent – now travels the globe photographing children with genetic differences. His mission? To “(change) our ideas of normal." I went into Positives Exposure’s online gallery to choose a photo to run with the interview. Out of hundreds,...

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Silent Sunday

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Six degrees of separation

A weekend ago I walked into my regular Starbucks. A customer was talking to the barista and gestured to me. I couldn't figure out why. Had I done something odd? Did she know me? Imagine my surprise when the barista said this woman, named Michelle, was paying for my coffee! She had attended our BLOOM speaker evening with author Amy Julia Becker and wanted to thank me. We got to talking and Michelle told me about her...

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Who's a burden? Who deserves help?

 Sometimes I despair at our culture's narrow sense of what makes a person 'matter' or, as Tracey Chapman sang in Fast Car -- what allows a person to "be someone, be someone." Are you your paycheque, your test scores, how well your body fits Western conceptions of beauty or athleticism or any other of a number of skills and attributes? If you can't measure up (cause you're an infant or a senior or past your prime as an athlete...

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A different take on the R-word

By Laura Rosen Cohen I have a child with a genetic disorder who is mentally retarded. That means that he has cognitive delays and is unlike regular children. He has a difference in his genetic make-up that affects his physical and intellectual abilities. In the past, individuals with mental disabilities have been called mongoloids, morons, cretins and imbeciles. More recently, the term “mentally retarded” has been used. Now it...

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Your infection questions answered

Here are Dr. Michael Gardam's answers to your questions following our interview about infections acquired in hospital. Dr. Gardam is medical director of infection prevention and control at Toronto's University Health Network. 1. Do you believe that it is an acceptable practice to wash with an antibacterial waterless soap instead of using the authentic soap and water? I have heard that in some facilities the doctors/staff...

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A bit of magic while you wait

Stand, walk, wheel or bounce on 100 coloured tiles to grow images on a screen while you wait for your clinic appointment. The longer you stay in one spot, the larger the image grows, so kids with the least mobility can create the biggest pictures. Work with other kids to create a wall-sized forest. Check out this amazing video about how rehab engineers, scientists and artists created ScreenPlay at Holland...

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Links

So many fascinating items related to disability and healthcare. When Doctors Grieve "Not only do doctors experience grief, but the professional taboo on the emotion also has negative consequences for the doctors themselves, as well as for the quality of care they provide." Read about this Archives of Internal Medicine study in the New York Times. I have plans to interview the lead researcher -- at SickKids here in Toronto -- later...

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Hospital infections kill, are preventable

Barb Farlow sent me this video called Gabby. It's about a couple who lost their daughter to a preventable infection she picked up in a newborn intensive care unit (NICU). The video was produced by the Perinatal Quality Collaborative of North Carolina. Barb is on the Stop Infections Now Collaborative of the Canadian Patient Safety Institute. Watch the video. The images above are from a piece in the New England Journal of Medicine. The...

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