One question Friday

Thanks Anchel -- for submitting this question: "What are some easy things we can do at home to encourage speech?" I'm working on a tips sheet with our speech folks and will post in the next two weeks. I'll make sure I message you when it's up. Thanks! Lou...

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Imagine...a doll with pink hearing aids!

A fuscia pink wheelchair and hearing aids are part of a new American Girl line of accessories that includes purple sunglasses, earrings in the shape of pets and a flower-power purse. Brilliant! But after noting that these items allow kids with disabilities to see themselves in their toys, and help normalize differences for all children, Jezebel writer Dodai Stewart questions whether the...

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Any Day Now

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A sibling night with Melanie and Tommy

Hear about how one creative family sought to educate school peers about their daughter's genetic syndrome -- and help her brother cope with sadness that his sister was being teased -- by writing a children's bo...

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Call for questions

Post questions related to child disability and parenting in the comments below and we will answer one next Friday by going to an expert at Holland Bloorview -- professional or parent. Note: We can't answer questions about your child's care at Holland Bloorview in this forum. All feedback related to your child's care here is welcome by calling Kimberley Siu-Chong, client and family relations facilitator, at 416-753-6084. Kimberley...

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One question Friday

It's our first day to respond to a BLOOM question (actually, we're doing two today). Q1. How do healthcare professionals feel when they meet a family that has waited for months to meet them? Do healthcare professionals feel there are adequate resources to appropriately assist all the children they assess? BLOOM asked Dr. Golda Milo-Manson (photo inset), a developmental pediatrician and vice-president of medical and academic affairs at Holland...

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One humanity, one voice

Being different is isolating, but if we join with others who are perceived as undesirable we find community and a powerful voice for social change, says Andrew Solomon, author of Far From The Tree, at a talk at the Toronto Reference Library yesterday. "It's important to establish the commonality of difference," Solomon says, speaking of his new book that explores families of children who appear "alien" to...

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Negative capability

Students in black academic gowns stream down the wide wood staircase. Chatter chatter chatter. Laughter. Gowns come off. White coffee cups on saucers. The sound of a piano. My disabled son will never come here, never know this. Do you know where the Round Room is? Two girls direct me through the stone courtyard. It's dark and still, except for the running water -- little waterfalls in a pond. I find the Round Room but there's a notice on...

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To ponder

"There is no contradiction between loving someone and feeling burdened by that person; indeed, love tends to magnify the burden. These parents need space for their ambivalence, whether they can allow it for themselves or not. For those who love, there should be no shame in being exhausted..." Andrew Solomon, Far From The T...

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One question Friday

Post questions related to child disability and parenting in the comments below and we will answer one next Friday by going to an expert at Holland Bloorview -- professional or parent. Fire awa...

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Is difference an illness, an identity, or both?

I'm ferociously reading Far From The Tree by Andrew Solomon. His insights on how parents find meaning in raising children with disabilities and other differences is fascinating. I've marked up the first chapter with lots of underlining and asterisks, but this passage really made me think. "Anomolous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize...

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Shelby calls for a more open, accepting world

As our lead up to the International Day of Persons with Disabilities Dec. 3, we continue to ask how we can pull disability issues into the mainstream. Here we speak with Shelby Nurse, a Florida college student and advocate for people with disabilities who spoke yesterday with her dad Thomas at the Bloorview Research Institute Symposium. Shelby is on her way to becoming a child life specialist to ensure that hospitalized kids "remain kids." In a strange twist, her aunt is a dear friend of one of our BLOOM readers in Switzerland. It was an...

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Mommy blogging -- British style

The Mumsnet BlogFest on Saturday drew about 300 mommy bloggers to London to talk about how blogging is giving a voice to women's issues and "recalibrating the power balance in the world of comment," said Justine Roberts, co-founder of the website that runs an umbrella network for bloggers. In Finding Your Voice, Zoe Williams, a Guardian columnist and author of two parenting books, said she writes as though she's talking to someone...

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Emily likes 'all the typical teenager stuff'

Meet Emily Chan, our role model in the next BLOOM magazine. Emily, 16, has a rare neuromuscular condition that creates general weakness and breathing problems. She uses a ventilator and a power wheelchair. Here's a sneak peek at part of our interview. At six months, when Emily was in an acute-care hospital, her parents were asked if they wanted to stop her medical treatment. “They told me I have a choice,” says mother...

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Mixed messages

Sometimes my brain feels like it's going to burst from trying to make sense of the mixed messages I read every day about disability. Today I was working on the next science roundup for the BLOOM magazine. Here are a few headlines: On the one hand: A child's disability benefits family and society, parents say On the other hand: Risk of violence almost quadrupled for disabled children, report finds (i.e. my child...

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Great resources for sex education

Woodbine House has produced two excellent guides to puberty and sexuality: The Boys' Guide to Growing Up and The Girls' Guide to Growing Up. The books are written at a Grade 3 level with illustrations and the information is clear and positive. They're targeted to youth with intellectual disabilities but I think are great "Coles Notes" versions for any pre-teen or teen -- cutting through jargon and delivering the facts kids need...

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College student speaks at our research symposium

There are a few spots left at the Bloorview Research Institute Symposium here at Holland Bloorview on Nov. 13. The keynote is Shelby Nurse, a Florida college student with cerebral palsy. See her video! Register online for the symposium at http://www.regonline.com/builder/site/Default.aspx?EventID=1136488 by Nov. ...

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Seeding ideas at OACRS

I was at the annual conference of the Ontario Association of Children's Rehabilitation Services today. It's always a treat to see parents from across the province who I only get a chance to catch up with once a year. It's amazing to be around people who understand what the "parenting a different kid" part of my life is like. I feel heard and understood. Just a few quick observations. My friend Amy Baskin, co-author of More Than...

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Just who is the expert on your child?

I don't expect to find a deep understanding of the complexity of disability in the mainstream. That's why I was taken aback by this piece in The New York Times Magazine: How do you raise a prodigy? In it, Andrew Solomon draws parallels between child prodigies and children with disabilities -- in terms of how they challenge their parents' preconceived notions of 'normal' and what makes a good life. And he cautions that...

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Disabled child teaches deaf mom a new normal

I'm going to the Mumsnet Blogfest next weekend in London, UK (let me know if you'll be there!). I read about the political influence Mumsnet was having in Britain, and how it touched on issues facing families of children with special needs. Mumsnet has a fantastic list of bloggers who are parents of children with disabilities. Melissa Mostyn-Thomas (above with Isobel) is one of them. You can follow her at The Mostyn-Thomas Journal....

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