Hospitalization costs

When my Dad was hospitalized last year, we quickly realized that our presence – or that of someone we hired – was necessary 24/7. My dad had no short-term-memory and became confused without someone to orient him. We hired a personal-support worker to sit with him at night. The second evening, after receiving a diagnosis of advanced lung cancer, a nurse told me: “He may not make it through the night.” We were moved to a private room. No one...

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Hard work

I'm hanging out with Ben today. He worked very hard in physio. He still has great difficulty straightening his left leg, but there's been a bit of improvement. Here we are afterwards taking a break with Sir Walter Melon! ...

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News stories of interest

Last night Ben and I went swimming in the heated pool at Bloorview -- the first time in months since before his surgery. He has a knee contracture because his leg was held in a bent position for so long in the cast -- which means that he can't straighten his leg, and until he can straighten his leg, he can't walk. However, the buoyancy and warmth of the water was incredibly relaxing. So for 1.5 hours we could float around and forget all about stretching out his tight, painful leg and the fact that he can't stand on it the way he used to. Here...

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When siblings step in (part 2)

Pat Ellingson (right) grew up in Vancouver in a single-parent family with six children living on welfare. As one of the older kids, she took on the role of caregiver for her younger siblings, including sister Carol (left) who has a developmental disability. What makes Pat unusual is that at the age of 50, she became Carol's primary caregiver. Carol had lived with their mother until she died, and came to live with Pat and her partner Carolyn at age...

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Care notebooks keep you organized

Today we have a guest blog from Amy Julia Becker, mom to Penny, who has Down syndrome, and William. The white board above is a chart of the things the family was asked to work on when Penny was two. A variety of organizers have been created to help parents keep track of the plethora of information they receive about their child with special needs. Amy Julia writes about a care notebook that was developed at the Children’s Hospital of Philadelphia....

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Louise joins the Circle of Honour

On Wed. night I received a Circle of Honour Award for advocacy for my work with BLOOM. The Circle of Honour is Holland Bloorview’s highest award for people who make the world a better place for kids with disabilities and their families. This award was very special to me because I was nominated by two parents. At the event they showed a video that included comments from a number of BLOOM readers. I wanted to share my speech with you. I’m honoured...

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Giving: 'The greatest feeling you'll ever have'

Bloorview has exciting news. This morning Canadian investment executive Bill Holland (in photo with Ben Hopper, 14) announced his family was donating $20 million to Bloorview Kids Rehab. The Holland family has already donated $6.2 million to the hospital. In recognition of their extraordinary giving, Bloorview is adding the Holland name to our name. Our new name is Holland Bloorview Kids Rehabilitation Hospital. See the profile on Bill below! Giving:...

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Tying Your Own Shoes: An interview

I was contacted by Chelsea Jones of Regina, Sask. recently. She’s studying critical disabilities studies at York University in Toronto and is a journalist. She interviewed Tying Your Own Shoes filmmaker Shira Avni and three of the subjects of his documentary about artists with Down syndrome (see interview below, artists in photo above). “My interest in disabilities also comes from a family member – my brother has Down syndrome,” Chelsea says....

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When you wish upon a star

Last night Ben and I lay looking up into a black sky filled with stars. Our bodies sunk into a yellow bean-bag mat and he draped an arm across me. As we took in the mystery and majesty of the immense sky, our breathing slowed."If you see a shooting star, you can make a wish," said the recreation therapist leading us through our simulated journey into space in the Snoezelen room."I wish I could walk," said a young boy."I wish my mom and dad would...

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'Your shoes drive me crazy'

‘Your shoes drive me crazy’By Ellen Painter Dollar Shoes drive me crazy. To be more specific, if you are a woman who wears what most women wear, your shoes drive me crazy—your flip-flops and Crocs, your Dansko clogs and Merrell mocs, your ballet flats and high-heeled boots and wedge espadrilles. What have you and your shoes done to offend me? Nothing intentional, I assure you. I’m bothered by the very fact of your shoes and the simple relationship...

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Ben's update

Today was a special day. Ben was visited by his class at Bloorview. As you can see, his cast is off. It came off on Thursday, but was not quite the happy occasion we expected. First, Ben decided he didn't want the cast to come off. His intuition was good, because when his leg was finally freed it began to spasm, which is common when a limb has been immobilized for so long. He had a painful weekend with both legs "jumping" around, but last night...

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More than enough

A while back when I sat on a TVO panel about raising kids with special needs, the host asked me: “How does a parent know that they’re doing enough? That they’ve done everything they can?” At the time I thought this was a bit of an odd question. I can’t imagine the parent of a typical child being asked: “Are you doing enough?” And implicit in the question is that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability. My answer was that...

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