...
Sunday, October 31, 2010
Wednesday, October 27, 2010
Mission accomplished
Ellors Madak (right) has been found, and is being held, at a nearby Book City where Ben left him a couple of weeks ago. Ellors -- who teaches anyone who will pay him how to fly spaceships -- is one of Ben's beloved Star Wars characters. Ben has a habit of leaving characters in places where I can only imagine they undertake special missions. Ben has been going into amazon.com and pulling up Ellors every night to remind me that he's...
Tuesday, October 26, 2010
Parent power
For me, the highlight of the Canadian Association of Pediatric Health Centres’ conference in Winnipeg last week was the parents who spoke and participated.
On Tuesday, we were wowed by two parents who talked candidly about how their worlds’ changed when their sons were born with disabilities. Despite the initial struggles and ongoing challenges, both families made a conscious decision that they would create a happy family, and it was...
Sunday, October 24, 2010
Thursday, October 21, 2010
The window
Today we have a guest blog from Marcela De Vivo, mom to Nathan, 4, pictured above. In Marcela's 36th week of pregnancy, Nathan was diagnosed with severe holoprosencephaly, a malformation of the forebrain. His parents were told his odds of surviving birth were one in 20 million. If he did, doctors said he would be a 'vegetable' and not have a meaningful life. I read Marcela's blog, and one theme that kept popping up was the...
Wednesday, October 20, 2010
A shattered trust
I'm grateful to one of our readers for sharing the following story.
A shattered trust
When my daughter was discharged from the NICU her neonatologist encouraged us to keep in touch. “We love to get photos” she said. We did keep in touch, but lately I don’t want to send photos.
I worry that in sharing photos with our medical professionals they’ll assume we’re okay and feel they don't have to worry about us. This makes me sad,...
Monday, October 18, 2010
Parents in the 'peg'
I'm at the Canadian Association for Pediatric Health Centres conference in Winnipeg, Manitoba. Yesterday was an all-day session with the Canadian Family Advisory Network -- parents from across the country who sit on family advisories at their hospitals. It was a fascinating day with many heartfelt firsthand stories of raising -- and sometimes losing -- children with disabilities or chronic health conditions.
I spoke about the BLOOM blog and we did a session looking at barriers and solutions to getting hospitals and family advisories...
Friday, October 15, 2010
Clinicians set tone for parent collaboration
Two parents shared their perspectives on partnering with professionals to support quality and safety in children's rehab and acute-care at a grand rounds at Holland Bloorview on Wednesday.
Here are a few key messages I took away from this fascinating talk.
Ann Hovey, with daughter Cailyn above who was diagnosed with a terminal brain-stem tumour six years ago (and sat in the audience to hear her mom speak!),...
Wednesday, October 13, 2010
Welcome to Monica and David's world
Monica and David airs Thursday night on HBO at 8-9:15 p.m. E.T.
Monica and David explores the marriage of two adults with Down syndrome, capturing their storybook wedding and the challenges of early married life. Here's an interview with first-time director Alexandra Codina (photo right, right), who is Monica's cousin. This interview was shared with BLOOM by BLT and Associates, a social media firm in Los Angeles that...
Sunday, October 10, 2010
A tribute to Ben Tobias
Canadian violinist Adrian Anantawan contacted me this weekend to ask if we would pay tribute to Ben Tobias (above with sister Katie), a 14-year-old who was bullied before he took his own life in August. Ben was born missing both legs and his right hand.
Just a few weeks before his death, Ben, who lived in Bothell, Wash., spoke with Adrian, an internationally renowned violin soloist in Toronto who is also one-handed, to learn about...
Friday, October 8, 2010
Snapshots of humanity
Snapshots of humanity
Invisible No More records the lives of Canadian children and adults with intellectual disabilities through 100 photos and 35 stories from renowned social documentary photographer and writer Vincenzo Pietropaolo. Vincenzo spent a year travelling to every Canadian province and territory to meet with individuals with developmental disabilities and their families. He photographed them in everyday places...
Wednesday, October 6, 2010
Inclusion: The dream
A number of stories about inclusion have crossed my desk recently.
Filmmaker Dan Habib contacted me about his documentary Including Samuel. It's a beautiful account of how Dan's family strives to have his son Samuel, who has cerebral palsy, included in a regular classroom and community activities. We also meet other children and adults to hear about their experiences with neighbourhood and "special" or segregated schooling....
Tuesday, October 5, 2010
Canadian helps disabled speak through music
The AFP news agency posted this story about Stefanie Blain's research yesterday. Stefanie recently completed her doctoral studies in biomedical engineering at Holland Bloorview and is now a postdoctoral fellow at the University of Michigan. I just bumped into Krystal Char (with clowns above) and her father Fred and Fred tells me that when Krystal visits with our therapeutic clowns, her physiological signals are translated into...
Monday, October 4, 2010
Outside the lines
Ben had a rough start back to school.
He missed April, May and June in hospital post-surgery, then he had to stay home the first week because of bronchitis. A week later, he got a bad cold and missed a couple more days.
He's still hobbling around and one of the reasons is that his operated-on leg is now one-inch shorter than the other leg. This is apparently a common result of the kind of hip surgery he had, though we didn't...
Posts
