'The shoes are too big'

Angela Amick lives in Ringgold, Georgia and writes at My Three Sons about life with Andrew, 4, Benjamin, 2, and Thomas -- just two months! Following is part of a post that appeared recently on her blog, with the photo of Woody above. It's a moving, honest piece about loving your child but struggling with aspects of your child's disability. I think we can all relate to sometimes feeling like 'The shoes are too big.' Thank you for sharing Angela!...

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Gardening program brings nature in

I wanted to share this picture of Ben and I which our wonderful photographer William took the other day. As you can see, Ben is smiling again. He's being weaned from his pain meds and saying goodbye to some of their nasty side-effects. He's becoming much more like himself and enjoying the activities at Bloorview. Last night he and D'Arcy did some gardening on the third floor terrace of the complex-continuing care unit (CCC). He planted beans...

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C'mon Papa

Today we have a book review from Waterloo Vice-Principal Cindy Matthews. Read more about Cindy at the bottom. Thanks! Louise C’mon Papa: Dispatches from a Dad in the Darkby Ryan KnightonRandom House of Canada, 2010Review by Cindy Matthews Books about moms raising their children are a dime a dozen. There are a limited number of books from the dad’s perspective. C’Mom Papa: Dispatches from a Dad in the Dark is truly unique in the field. It’s...

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'Who can I be mad at?'

I started this Saturday and finished Monday. 'Who can I be mad at?' Ben had a great day yesterday. He went to school in the morning and afternoon, relaxed in the snoezelen room, went to the library and was quite happy, much closer to his usual self. His worker Sallyanne is wonderful with him: she empowers him. Today was another story. Perhaps my perception is off because I didn't sleep well. The hospital is deserted because it's...

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When sleep eludes your child

Imagine your six-year-old child gets up at 1 a.m. four times a week, and won’t fall back to sleep till 5 or 6 in the morning. Relatives want you to visit, so you book a hotel and make the three-hour drive. But at 1 in the morning the first night, your oldest son wakes up, begins pacing round the hotel room, and wakes up his younger brother. Knowing nobody will sleep this night, you pack up your stuff and hit the highway for the three-hour...

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'I hope in me she sees something of herself'

I'm delighted to share a guest blog today from Ellen Dollar, a writer in West Hartford, Connecticut who has a bone disorder that she shares with her daughter Leah (pictured above). Does it make it easier, or harder, to parent a child who has the same disability you have? I thank Ellen for her thoughtful, moving response! Read more about Ellen's blogs and upcoming book at the bottom. 'I hope in me she sees something of herself' By Ellen Dollar “Shhh,...

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This and that

Happy Monday! I have a few items of interest today. Earlier this year, Michigan forced its schools to stop awarding diplomas to high-school students in special education. In the past, all graduating seniors, despite ability, received a diploma. Last month I received my son Ben's report card and it really bothered me that in addition to the report on how he's meeting his IEP goals, I received a form that lists the 18 required and 12 optional credits needed for a diploma, and in the earned-this-report and earned-to-date columns beside the list...

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He ate a donut

Ben has been at Bloorview a little over two weeks since his second surgery and he finally seems to have turned a corner.He had an x-ray which showed the second hip hardware intact -- despite being taken out of the cast a number of times to clean his wound -- and his incision is almost healed. He's still not eating normally. No meals. He'll occasionally take a cherry or a cracker. But today he bowled us over by eating an entire vanilla-dip donut....

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Utah pandemic guidelines exclude some disabled children

Utah guidelines for who gets admitted to hospital or transferred to critical care during an influenza pandemic exclude children with chromosome disorders like Trisomy 13 and 18; spinal muscular atrophy; and progressive neuromuscular conditions such as muscular dystrophy "with inability to sit unaided or ambulate when such abilities would be developmentally appropriate based on age." "Physician Norman Foster agrees it is reasonable to allocate scarce care based on a person's underlying cognitive abilities," according to this Salt Lake Tribune...

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Music By Prudence

The Oscar-winning documentary Music By Prudence premieres on HBO2 tonight at 8 p.m. ET in the U.S. It's played at several American film festivals and the DVD will be released later this summer (so we in Canada can see it too!). Prudence, the hero of the film (front centre), is born with arthrogryposis, a condition that causes contractures of her joints and eventually results in her legs being amputated. Her paternal grandmother wants her dead,...

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'Burdens and blessings'

‘Burdens and blessings’ By Amy Julia Becker “Penny’s tough.” He said it because he wanted to support us. Peter and I were on vacation with close friends, and we had asked for parenting advice. That week, Penny just hadn’t been able to keep her “listening ears” on. She hadn’t “controlled her hands.” She wriggled and squirmed and ran away. She dumped milk on the counter. She refused to use the potty. She even pulled our friends’ daughter’s...

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Free as a Bird

Today we have a book review by Cindy Matthews, a vice principal and writer in Waterloo, Ont. who has lots of experience working with children with special needs. She brought this new book—Free as a Bird—to my attention. The book is fiction, but the author has a sister with Down syndrome. I can't wait to read it. Thanks Cindy! Free as a Bird, Gina McMurchy-Barber, Dundurn Press, Toronto, 2010. 168 pages.Reviewed by Cindy Matthews My name’s...

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When negative attitudes compromise care

Today we have a guest blog from Dr. Dick Sobsey, a professor of educational psychology at the University of Alberta, where he’s also associate director of the JP Das Developmental Disabilities Centre and director of the John Dossetor Health Ethics Centre. Dick’s son Dave, 19, has multiple disabilities. Dick’s research looks at violence against people with disability; ethical issues related to disability; families of children with disabilities; and inclusion. He’s a keynote speaker at a workshop later this month called Life and Death Matters: The...

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I am one of you

I am one of youBy Louise Kinross I used to pass them on my way in, taking a quick smoke. I’d see them around the building wearing track pants and jeans, wet hair air-drying. Sometimes there was exhaustion and desperation in their eyes. Other times elation: their child had lived through a catastrophic accident or illness or a miracle had occurred – a tiny movement in a limb, a word. I got to know some of these parents and I marvelled at their...

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