The absence of normal 'frees us'

I have eagerly anticipated posting this piece by The Boy in the Moon author Ian Brown (with son Walker, above). It is a brilliant essay that speaks to a central question for many parents of children with complex disabilities: What is the value of my child's life when he or she will not achieve conventional success? Ian, a veteran feature writer at The Globe and Mail, wrote this piece for the summer issue of BLOOM. It reminds me...

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Technology in school

Cindy Matthews is a vice-principal of special education programs in Southwestern Ontario and writes as a freelancer for a variety of educational magazines. She's written for BLOOM, and now she's looking for some input from our families for an article she's writing for the Special Needs Opportunity Window (SNOW). I have been asked by SNOW to do an article on the use of technology in schools by mid August. I would like to get some background from parents and students who are interested in e-mailing me at cindy_matthews@wrdsb.on.ca. I'd...

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I don't like explaining disability

A wonderful social worker here at Holland Bloorview sent me a list of commonly asked questions by parents. 'How to explain your child's disability' was at the top of the list. This made me wince a bit because when my son was younger I was more proactive in explaining his differences -- both to him and to others. But somehow I seem to have lost my touch. Because of Ben's communication problems I've never been forced to answer questions...

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Work and severe disabilities

A study to be published in the August issue of Intellectual & Developmental Disabilities looks at factors associated with paid work during high school for students with severe disabilities. The study is covered in an article on Suite 101. Some of the findings: About 28 per cent of 1,510 students had paid work experience. Of those, 31 per cent had an intellectual disability, 17 per cent had multiple disabilities and...

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At the barre

I came across this cool photo by Jamie MacDonald of an accessible ballet class we wrote about last year: Katie's ballet dream comes tru...

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Mock my pants, not my sister

Of interest to those of you who read about the GQ story that refers to 'Style Down Syndrome' in slamming Boston as the worst-dressed in the nation. Mock my pants, not my sis...

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Wordless

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Ben's story

This is a story that D'Arcy wrote about Ben (above, in a much earlier photo) and read at his Life Plan day. It's a beautiful piece because he totally pegs Ben when he calls him a serial giggler. When I first read it, I was going to 'edit' it, as D'Arcy's take on some events is very different from mine. But this is D'Arcy's story as much as Ben's, so I didn't touch it. Louise Ben's story By D'Arcy McGovern Ben is a giggler....

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He's on a roll

Ben caught more than 6 fish tod...

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Too disabled? Not disabled enough?

It bothers me when criteria for services for kids with disabilities is so restrictive. Recently we were referred to the local agency providing service for youth with intellectual disabilities. We wanted a consultation with a behaviour management person to see if we could reduce Ben's tendency to pick at scabs when anxious. I was asked to send a copy of Ben's most recent psychological report. I was surprised when the intake person called back to say that they wanted to look at previous reports because Ben's scores might...

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The boy is back

This just in from Camp Kennebec on day 2: Ben slept fantastic last night. The storm was brutal but we got through it. Ben and I just got back from fishing. He caught 4 fish and we saw a huge turtle. Was amazing. ...

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Disability and quality of life

I contacted Dr. Larry Fenton, a pediatric palliative care doctor in South Dakota who had an invited comment published in the American Journal of Medical Genetics this month. He said he would "be honoured" to see it reprinted here. We have talked before about quality-of-life measures that are based on how "most people" would rate life with a severe disability with life without: Is life with disability half as good as life without? "How easy it is to assume we know what a good quality of life is for anyone other than ourselves," Dr. Fenton writes....

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When 24-7 caregiving destroys a marriage

The following piece was written in response to our recent posts on the mental-health impacts of parenting kids with disabilities. This story was submitted by a blogger who is known to many of you for her wisdom, compassion and humour. And now -- courage. She wonders if there are others out there like her. When 24-7 caregiving destroys a marriage How one woman's world gradually shrank away I never imagined it could happen to me. ...

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Kumon man

Ben has never been able to write because of weakness in his hands. I started him on Kumon reading but figured I would always have to fill the letter blanks in. It's hard for him, but he's doing it now. And he'll even do a whole book by himself -- quite miraculous considering the degree of his attention problems. And he's able to identify most words when asked "show me ___________" I know writing is supposed to aid reading so...

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What about me?

I knew the post on depression and anxiety would strike a chord with readers. A week ago, while we were in Chicago, I had a bit of an epiphany. Not only was I filled with angst about my son’s future, grief that he won’t follow the conventional path, and anger at the injustice of it all, but I was also worried about me. Yes, I want my son to have a good and rich life. But I want to have a life too. I know that’s not something we parents...

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Get your cameras ready

This contest is open to Canadians. Read more at filmpossibl...

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Your declaration of interdependence

This is a piece for parents of children with intellectual disabilities, but is relevant to all parents. Your declaration of interdependence It's written by Caroline McGraw. Caroline is program director at a L'Arche in Washington, DC, and has a younger brother, Willie, who has autism. L'Arche is a non-profit, faith-based organization that creates homes where people with and without intellectual disabilities share life together. Caroline also does motivational coaching and support planning for caregivers and parents. I thought this...

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High-needs parenting: It takes a mental toll

I recently posted about a study of dads of young adults with autism who had high rates of clinical depression and were pessimistic about their child's future: Dads and depression. I was surprised that we didn't get a single comment. Last night I was reading some blogs I follow and was struck by these two parents who recount the psychological toll of parenting a child (or children) with complex needs: Separation. Anxiety. I've lived...

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Choosing Carter's voice device

Today we have a guest post from Stacey Moffat, a teacher, writer and mother to three, including Carter, 8, above, in Kitchener, Ont. I was interested in the topic of voice devices because we are pursuing one for Ben. We have abandoned many in the past because we always found the technology archaic and clunky and a disincentive to using. It seems that different programs are popular in different geographic regions. Tell us about...

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What matters

As we drove west to Chicago last week I travelled a route I knew so well over 20 years ago as a university student in London, Ont. At the time, a family neighbour in Toronto owned a Mazda dealership, and he had rented me a small blood-red Mazda 323 with a stick shift. On the spur of the moment, I might decide at midnight on a Friday to drive the 2.5 hours back to my parents' place in Toronto. I'd hop in the Mazda -- slide...

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On the road

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