What should I ask Donna Thomson?

Some of you read my blog What is a life well lived? It's about Donna Thomson's new book (above) where she recounts life raising her son Nicholas, now 22, who has severe cerebral palsy. Thomson introduces us to the Capability Approach, a model developed by economist Amartya Sen. This approach defines a good life as one in which a person has the greatest freedom to choose what they do within a given set of circumstances, especially...

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Word wall

A few years ago Ben chose the colours black and orange for his room. We painted one of the walls with a 'chalkboard black' but never ended up using the chalk. I was thinking about making a word wall with bristol board, but then I remembered the ready black wall upstairs. Voi...

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Don't forget to sign up for summer camp!

We just printed this poster with tips on how to look for summer camps for children with disabilities in Ontario. Because these camps fill up so quickly, it's important to do your search now! Here's the copy below. Louise LOOK • Start early – many camps fill up by February • Use the camp search engine • Attend a local camp fair, such as the Camps Expo in Toronto • Ask friends/family for ideas • Check brochures in Holland Bloorview's Family Resource...

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An inspiring voice

I met an amazing young woman called Irene Tran in 2007 (right). She was an inpatient here for six months after a ruptured brain aneurysm took her ability to speak, walk and read. You can read about her in this Role Model column we did: The journey from "whatchamacallit". Irene reads the BLOOM blog and sent me a very inspiring message this morning about a school she's attended since her brain injury. She was following my story about Ben and wanted...

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Ethics in the NICU

This is a fascinating article brought to my attention by Barb Farlow, who we interviewed in For the love of Annie. The role of a pediatric ethics committee in the newborn intensive care unit is published in the Journal of Perinatology this month and looks at ethical issues related to parent authority and best interest of the child. A couple of cases are presented, including one of an infant with Trisomy 13 who needs heart surgery. Historically, this type of surgery wouldn't be performed because Trisomy 13 is associated with...

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Jan. 26 update

Ben began some language, memory and other testing with a psychologist on Monday. My hope is that it will show that he's capable of learning academics at his own pace. “I have already seen evidence that he can do academic work in the true sense of the word, even though it is obviously nowhere near a high-school level,” the psychologist told me. We hope to have an IPRC to look at other possible school placements in late February....

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What is a life well lived?

Some of you remember Walker’s Gift, a post about a talk given by Ian Brown, author of The Boy in the Moon. Brown's son Walker has a rare genetic condition and significant disabilities. Brown talked about how doctors never addressed the central question of the meaning of Walker’s life: "It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life...

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My name is Matt

Matt Kamaratakis wrote this blog in response to Tekeal's blog Growing up. Thanks Matt! Louise We have never had the pleasure of correspondence or simply talking as one human being to another. For, I am not a parent, but do have a disability, and can relate to every word in your post – even the ones which we have locked away in our hearts. Our journey for peace and self-acceptance is as life itself: “never ending and always changing.” For...

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Growing up

This piece cuts to the heart of what I believe many of us parents struggle with in a culture that values 'normalcy.' It's written by Tekeal Riley of Bern, Switzerland (above with daughter Livia). Tekeal and I have an interesting connection. She posted a comment on the BLOOM blog and when we got to chatting I realized she lived in Bern, where my cousin Jennifer lives. We then realized that Tekeal had already met Jennifer...

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Individual Education Plans 101

I am reading the Ontario Ministry of Education guidelines for developing and implementing individual education plans (IEPs). I read similar legal documents when Ben was much younger, but over time it seemed that what was written in his IEP wasn't necessarily followed, often because of a lack of resources. Here are the most salient points I've learned, some of which I had no understanding of and which were never...

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Game to boost fitness, friendship

Scientists at Holland Bloorview and Queen’s University are developing a virtual-reality game that promotes fitness and social networking for teens with cerebral palsy. I interviewed Dr. Darcy Fehlings (left), co-principal investigator, to learn more about this two-year project. BLOOM: What is the goal of this research? Darcy Fehlings: To develop a fun, virtual-reality game that youth with cerebral palsy can use to improve their fitness and interact...

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No advance, no retreat

I had an advocate look at Ben's individual education plan (IEP) and was told it was in no way meeting his educational needs. In looking back through Ben's school files, I see that I have been fighting for my son's education for a dozen years, since he began school at age 4. In junior kindergarten he went to a segregated school for children with physical disabilities. When I picked him up one day I found him...

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Homeschooling: How I did it

In response to a post I wrote about my son's education, Jennifer Johannesen (right) shares why she made the decision to homeschool her son Owen (left) and how she did it. Many of you know Jennifer at her blog YES or NO. Thank you very much for sharing this Jen! Louise Homeschooling: How I did it By Jennifer Johannesen Even before I had children, I knew I wanted to homeschool in an unschooling fashion. Open learning through experience,...

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The gift of grace

I've heard Christopher Hopper (left) speak about his son Benjamin (right) at a number of Holland Bloorview events. In this elegant piece he shares how his persective on Ben and his disabilities shifted over time. Thanks Christopher! Louise The gift of grace By Christopher Hopper My first Father's Day gift was my son, Benjamin. He was born June 16, 1996, 12 weeks premature and weighing all of three pounds. For all...

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Welcome to Zach's List

Bloom readers asked for a marketplace where they could exchange used disability equipment. Barbara De Roo, mom to Zach, 2 (left), has launched one in the form of a website for Canadian families. At Zach's List, you can buy, sell, donate or exchange children's equipment. "We were looking for a place where we could find equipment for Zach that was cheaper and we couldn't find it," Barbara says. "Disability equipment is very expensive and it's...

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'Good things can happen'

Today I'm thrilled to share a post from DeeAnn Lancaster (left), an American mom who is further along the parenting road than some of us. Here's how DeeAnn describes her son Cody, 29 (right): "Cody has CHARGE Syndrome, is blind and autistic. Despite his disabilities, he is a very happy guy with a personality that seems to draw people to him. Some of Cody's favorite things are swimming, bowling, playing BINGO, and...

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An education

This photo has nothing to do with this post, other than it captures a moment when people thought outside the box to make my son's dream of flying down a zipline reality. This post is about education for youth with intellectual disabilities. I've just begun reading The Beyond Access Model, which outlines best practices in including students with cognitive disabilities in regular classrooms. It's based on a four-year demonstration...

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Learning to love the baby steps

I'm delighted to share one of our Parent Talk columns from the December issue of BLOOM. It's written by Ellen Seidman. Many of you know Ellen as the mom to Max (above) and Sabrina who blogs at Love That Max. Ellen, who lives in New Jersey, was named one of Babbles Top 50 Mom Bloggers of 2010. Read below and you'll see why! Louise Learning to love the baby steps by Ellen Seidman I am sitting at...

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