Vote for Busy Bodies!

A seven-week program designed to get young kids with disabilities hooked on fun, physical activities is vying for a $50,000 grant from the Maple Leaf Sports & Entertainment Team Up Foundation Fund. You can vote for Holland Bloorview's Busy Bodies program today and everyday until Feb. 20 (click on View the candidates, then click on Holland Bloorview Kids Rehabilitation Hospital Foundation). Research shows that children with physical...

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CHOP reviewing transplant eligibility of Amelia Rivera

The parents of a girl who was allegedly denied a kidney transplant at the Children's Hospital of Philadelphia because of her intellectual disability say they've won a review of her case. In this article in the Philadelphia Inquirer, the Riveras say they met with hospital staff on Friday "after which they were given instructions on how to proceed with a possible transplant -- including how to have family members tested as potential donors." Chrissy Rivera said her daughter Amelia's chart initially had the words 'mental retardation' listed...

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Half of Canadian kids with disabilities lack friends

Update: I just read the report and in fact over half the children had either no friends or only one close relationship with a friend (a little different than how it was reported). A study that looked at the state of inclusion for kids with disabilities in Canada is disturbing and, I'm afraid, rings true in my experience. André Picard in the Globe hits the mark in his piece about Anne Snowdon's study today, saying: "In Canada, we talk a good game about integration, about breaking down barriers to allow the inclusion of people with...

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News on Amelia Rivera case

The Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras...

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Teachers, students ostracize disabled children, study finds

A 2011 Holland Bloorview study sheds light on how children with cerebral palsy are ostracized and bullied at school. A qualitative study of 15 youth aged eight to 19 with cerebral palsy published in Disability and Rehabilitation found that teachers and peers intentionally shut out children with disabilities. Examples include teachers who turn off a communication device for most of the day – rendering a student silent – and a teacher who refuses...

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'Keep coming back'

I wrote about the loss of Jamie Burnett, a therapeutic clown at Holland Bloorview who died in December. I want to write about something he left with me. I visited Jamie twice in hospital. The first time I felt somewhat awkward because of the magnitude of what he and his family were going through. I wanted to visit because I wanted him to know the difference he made in our family’s life when Ben was an inpatient. But...

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Dressing gown? Check

It doesn't matter when your child does something -- if it's something he couldn't do previously, it's a thrill. Ben can knot the belt on his dressing gown. He's never been able to tie his shoes because of fine-motor problems and we stopped trying to get him to years ago. But recently I've been demanding that he not come out of his room at night till his dressing gown belt is tied. And he's finally got the hang of it. It's one...

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Film questions psychoanalytic approach to autism in France

"The Wall" ("Le Mur") above, is a documentary that calls into question the French practice of treating children with autism with psychoanalysis. Read more in these pieces below. From Le Monde (English translation): Autism: Psychoanalysis against the wall Autism may well be France’s National Cause for 2012, but families living with autism remain helpless. Why? Because in France, psychoanalysts oppose behavioural methods which have already proven their effectiveness abroad. A retrograde position highlighted by Sophie Robert in her documentary...

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More media

Teenager Carly Fleishman has written a book with her dad Arthur coming out in March called Carly's voice. It's about her breakthrough communicating with a computer after years growing up as a child with autism who couldn't speak. Carly uses WordQ, a word-prediction software developed at Holland Bloorview. In case you missed this 20-20 piece on Carly, here it is above on Youtube. While I think there's much to be learned from Carly's experience, I think it's important to remember that many children who are non-verbal won't have similar breakthroughs....

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Marginalized group finds a voice in play

Canadian playwright and director Judith Thompson is casting for a play that weaves together intimate stories from the lives of actors with Down syndrome. It’s likely Thompson’s is the first play to give voice to this marginalized group: studies show that over 90 per cent of people given a prenatal diagnosis of Down syndrome opt to terminate. The play – to run at Toronto’s 2012 Fringe Festival in July – will be a montage...

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Links to this and that

Many of you follow Enjoying the Small Things, Kelle Hampton's blog that chronicles her life with four children, one who has Down syndrome, in words and images. Last year Kelle raised over $100,000 for the National Down Syndrome Society in the U.S. and she's at it again this year, edging closer to her goal of raising a total of $200,000. Check out her 2 for 2 campaign video above to honour daughter Nella's second birthday. Have you seen Noah's minute? A dad video-blogs about life with an adorable toddler with Down syndrome at Noah's...

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A communications primer on the Amelia Rivera case

Update: The family has agreed to meet with hospital officials next week. Acknowledgement. Empathy. Action. It’s a well-known prescription for corporate crisis communications following an error. Since we weren’t in the Children’s Hospital of Philadelphia room when a doctor told parents whether their child was eligible for a kidney transplant, we don’t know what transpired. We do know that two parents left that meeting with the understanding that their daughter, Amelia Rivera, was being denied a life-saving kidney transplant because she had...

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Join the conversation on CBC Radio

BLOOM contributor Jennifer Johannesen is being interviewed on CBC Radio One's Ontario Today this Thursday, Jan. 19 about her book No Ordinary Boy and experiences raising Owen (above), a boy with multiple disabilities who died at age 12 in 2010. One of the CBC call-in themes? "The pressures placed on families (created by ourselves and others) to continue working on ‘improving’ our children and moving towards sometimes impossible goals," writes Jennifer on her blog YES or NO.   Calls from North America will be taken this...

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The transplant debate

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 38,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision. Today in the Huffington Post, Parentlode...

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Too many balls

I was driving home with a foggy head Friday when I saw 3:30 on the dashboard and my brain made the connection: Ben had a physio appointment at 3:30 to check out pain he's had in his right knee. The appointment required me to get him to Holland Bloorview from school instead of home. But I had completely forgotten to call the cab and now Ben and I were both minutes from home. Just hours earlier, as I stood in the elevator at work, seeing...

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Silent Sunday

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Cognitive disability disqualifies child from transplant

Donna Thomson, author of Four Walls of My Freedom, posted today about a New Jersey family (above) whose daughter Amelia is being denied a kidney transplant because she has 'mental retardation.' Amelia has Wolf-Hirschhorn Syndrome, a genetic condition associated with intellectual disability. The story was posted by her mother on this site run by parents of children with the syndrome. Amelia (above centre) needs a kidney transplant....

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Raising a child who wasn't supposed to survive

I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amand...

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Mr. Kumon

We've had two lovely nights of Kumon where Ben has really enjoyed it and is showing that he's memorized adding 2 to most numbers up to 15 -- and even goes back to correct mistakes. Remember, prior to the summer, Ben had never been able to write and he never seemed to 'get' math. Part of the problem was that he couldn't 'play' with numbers the way other kids do by counting out loud or writing them down. And we never had solid...

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Perfection

My stomach tightened when I saw the 'sell' for this story about genetic engineering in last weekend's Globe and Mail. Invitro-fertilization and genetic testing are increasingly used by couples... capable of conceiving naturally to screen out not just catastrophic diseases but other 'undesirable' conditions. What are those undesirable conditions? One company that screens genes is considering adding the skin condition psoriasis to the list, the...

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Ben update

A quick update on Ben. He's back at school and happy to go. He's able to sit for 30 minutes or more to do his Kumon, which is quite remarkable because in the past it was hard to keep his focus on anything for more than about five minutes. It's still hard for him to write but he does it. He's still early on in the Kumon reading program but he got 90 per cent on his test at the Kumon centre before Christmas. We started him on math, which has always...

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The disability paradox

Satisfaction with life is subjective and hard to measure in another person, says clinical ethicist Lori Seller at The Montreal Children's Hospital. That's why people with disabilities rate their happiness with life as high, while doctors projecting quality of life with these conditions assume it would be low. Lori looks at research that shows that the way a health problem or disability is framed influences how a  family makes treatment choices for a child. To watch in full screen go to Youtube. Lori spoke at...

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A tribute to the clown who let us dream

By Louise KinrossI was gripped with fear about my son’s pain and challenging rehab. Would he ever walk again? Then out of nowhere they’d appear on the hospital floor and launch into a magnetic Star Wars scene: Dr. Flap would be C-3PO and Ricky would be Darth Vader. My mind would pop out of its prison, my stomach would fill with a slow, grounding breath, and my face would spread into a grin. Ben – immobilized in a body cast – would...

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This is how I do it

Check out these five guest posts on Ellen Seidman's Love That Max blog. Ellen interviews five mothers to find out 'how' they parent children with a variety of disabilities. Great practical advice here! Louise Katrina of Fickle Feline, mom to Max, 5, with autism Sunday of Extreme Parenthood, mom to two boys with autism Dana of Uncommon Sense, mom to a daughter with an undiagnosed genetic condition Debbie of Finding Normal,...

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After medical error: Care for the caregiver

Last year at a conference on family-centred care, I heard about the emotional anguish nurses and doctors experience after making unintentional medical errors that cause harm. “How do people come back from that?” I asked colleagues of mine. “Some don’t,” I was told. “They leave the profession.” Others were so full of guilt, despair and self-doubt that they couldn't sleep for months. Some experienced post-traumatic stress disorder. Then...

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A gift for BLOOM

David and Lynn Coriat (parents to Jessica above) have donated $100,000 to BLOOM. I interviewed David to learn about why his family made this generous donation! David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto. Slaight is a partner in SiriusXM Canada. Covering the costs of BLOOM – which is mailed free of charge to families and professionals...

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