One child, 10 conditions, no diagnosis

One child, 10 conditions, no diagnosis By Julie Drury Our daughter Kate (above) had 10 medical conditions but no diagnosis. Episodes of repeated vomiting, pain and racing heart rate sent us back to the emergency room -- over and over and over again. Imagine arriving for the 10th time, your toddler presenting with the same unexplained symptoms. Armed with a binder that contains your medical journal, a list of countless specialists and ever-changing...

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Three children, no voice

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Links

SickKids is having a Family Education Day this Sunday that I hope to attend. Check out the workshops and register online. Here are a couple of articles of interest: Computer unlocks autistic teen's exceptional voice The 'unnatural' Ashley treatment can be right for profoundly disabled children The iceman cometh with his legal team School bans a child from using her wal...

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Party 1

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I say 'gobbledygook!'

I know nothing about philosophy in the academic sense. And, after reading this paper published in the Journal of Medical Ethics, I have no interest in knowing anything about it. In After-birth abortion: Why should the baby live? a philosopher and an ethicist argue that killing newborns – before they have neurological self-awareness – is ethical for children with disabilities, because it's assumed they would be an unbearable burden...

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Hope for school inclusion!

This is a brilliant NPR piece about an elementary school in Boston. Thirty per-cent of its student body has learning disabilities, and these kids learn alongside their peers. Watch the vide...

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Party boy

The other night Ben told me he wanted a birthday party (his birthday is Monday) and he wanted friends to come (two index fingers interlocking then trading places). Given Ben's lack of friends, I was stumped. "Well, I'm not sure who I would invite?" I said, trying to mentally manufacture some friends. "You're going to be going out with Sallyanne (worker) and Matt on Sunday. Let me think about it." I turned to D'Arcy -- out of Ben's...

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Bloom speaker: Redefining success

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The upside of going downhill part 2!

This piece is written by a member of Holland Bloorview's family advisory committee. Thank you to our FAC! Before children, my husband and I took yearly ski vacations. We looked forward to getting away and enjoying the great outdoors. We travelled near and far. We flew and we drove. We’d go anywhere where there was snow. We lived for these vacations. We liked the sport, the sights, the food and the culture. We eventually took...

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Mom sells house to find right school

“And did you get what you wanted from this life, even so? I did. And what did you want? To call myself beloved, to feel myself beloved on the earth.” ― Raymond Carver My youngest son G is in Grade 3 and has Down syndrome. He goes to a local school, and this year has been The Year of the Mighty Struggle. So much so that we have placed our beloved home on the market, and are moving to a different neighbourhood for a school that...

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Of interest

Ashley treatment on the rise amid concerns from disability rights groups The Guardian reports that 12 families have carried out, or are in the process of undergoing, controversial medical procedures to limit the growth of their children with severe disabilities. We all care: A glimpse of devotion in Cat Island, Bahamas The Four Walls of My Freedom author Donna Thomson shares a moving account of her meeting with a mother of two...

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World 'split' over Olympic Games merger

This BBC story reports that people from 19 countries are split on whether the Paralympics should be integrated into the Olympic Games, according to a poll of more than 10,000 people. Some 47 per cent of those polled favour merging both Games, while 43 per cent want to keep the Paralympics separate. A majority of people in six countries -- including China, the US and Australia, which won the largest gold medal counts...

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Why do you read BLOOM?

Nathalie Wendling, mom to Melanie and Tommy, sent me this lovely note: BLOOM has helped me in ways that are difficult to explain. It has helped me understand myself better: my frustrations, my stress, my negativity, my jealousy, my worries, my exhaustion. Why we obsessively do all the things we do. Reading about all these other parents with so much courage, strength and valuable advice helps me feel supported. As parents, we...

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From boy to boy-man

Sometimes I wish Ben had more age-typical interests. I wonder whether I should be 'pushing' him into common teen pursuits and 'discouraging' some of his favourite pasttimes. Here's a pic of Ben at a comic book conference last week. He went with D'Arcy and had a blast. For the last three days he's been on a trip to Niagara Falls with Marjorie, Sallyanne and two other boys. They visited the falls, went to a bird sanctuary, played...

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Worry

"When we move in jagged and hurried ways, it becomes impossible to see, recognize or drink deeply from any beauty, wonder, or grace in anything or anyone in our path. Worry comes with an implicit promise that abiding in its company will ensure that our problem will be solved -- that we can somehow actually worry it away, fix it before anything bad happens. But worry is a false promise, a Trojan horse, a wolf in sheep's clothing....

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How it feels on the inside

I was struck by the honesty of some recent posts about parenting children with complex developmental and/or medical needs. 6 things you don't know about a special needs parent, which was apparently inspired by 5 things you should know about a special needs family How we do it: Part IX in a series Unfair monst...

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Sit back and enjoy the ride!

View 100 stunning photos and 13 videos that chronicle life at 12 Easter Seals camps in eight provinces across Canada. Twenty-five videographers and photographers and one editor put the multimedia project together as a PhotoSensitive exhibit. This one is of a camper on a zip line at Camp Squamish in British Columbia. Taken by photographer Andy Clark. Trust me -- Kids Who Can is breathtakin...

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Letting go on BBC 1 tonight

Our British viewers should check out this new documentary on BBC1 tonight at 10:35 p.m. GMT. Letting go follows Rosa Monckton and her daughter Domineca as Domineca leaves school and takes her first steps into a more adult world. And as Domenica prepares for the challenges of independent life, Rosa meets three other young people with learning disabilities, and discovers how they are managing their transition to greater independence....

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Links

We often talk about the unhelpful things people say when our child receives a diagnosis. But what words help? Read How far do encouraging words go? at Adapting Creatively. I liked this piece on Spread the word to end the word day by Erika at Flight of our Hummingbird: To me...Retarded means that a group of doctors shows up at your hospital bed and you know from their awkward stances, smile-less faces and pitying looks that your...

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Spread the word

In light of Spread the Word to End the Word day, Ellen Seidman at Love That Max has posted this video about her son Max...

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Inflamed

You know how they say we hold emotions in our body? This morning I was trying to resolve an issue in which I felt my son had been rendered powerless – not once, but twice. As I sat at my desk typing, I noticed my neck was sore. I ran my fingers under my chin and felt a large protrusion on the right side. A lymph node had suddenly ballooned out, inflamed. “Like a golf ball,” a colleague said. That’s odd, I thought. I...

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No more excuses!

It hit me when I was speaking to researcher Anne Snowdon about her study on the social isolation of youth with developmental disabilities. She emphasized that the findings weren't just about the youth: "It's not just the child that has no or few peers," she said. "It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their...

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Youth, families isolated, study finds

Over half of 166 youth with developmental disabilities in three Canadian cities reported having no friends or only one friend in Anne Snowdon’s recent study. Only 1 per cent spend an hour a day with a friend and 78 per cent don’t participate regularly in community programs. The study looked at families with older children – most were teens or young adults – who had autism, global delay, intellectual disability, cognitive and physical...

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Kids Who Can

Check out Kids Who Can, a black and white photo and film exhibit that captures daily life at 12 Canadian Easter Seals camps. This PhotoSensitive project, sponsored by Canon Canada Inc., runs from March 6 to 16 at the Allan Lambert Galleria, Brookfield Place, 181 Bay St. in Toronto. “It’s the best camp in the world,” says Kyla Young, above, at Camp Tidnish in Nova Scotia. “I love it. I’m going to go until I’m too...

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