A Mac and a grizzly

This was the winter wonderland yesterday, but now everything’s melted. I have two stories for you today. Last Thursday I brought Ben for his weekly physio session. Ben complains bitterly but he is always in a chipper mood afterwards. As we walked down the hall to the 2nd floor rehab gym, there lying on the floor was a two-inch grizzly bear character. Ben was delighted with this find, but I told him we would put it on the bench in case someone...

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Education and intellectual disability

It's interesting to see how divergent approaches are to teaching students with intellectual disability. Here in Toronto, we've found the emphasis is on life skills -- even if the child is perfectly capable of doing academic work at their own level. I'm told that most high school students with intellectual disabilities don't get high-school diplomas. I'm not sure if that's because they're directed into non-credit life-skills programs in Grade 9, before they're given a chance. One of the students who did beat the odds is Ashif Jaffer. But the...

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The transition learning curve

I mentioned a New York Times essay by Susan Senator (photo left) in this blog about youth who won't live conventional adult lives. Susan is the author of Making Peace with Autism and The Autism Mom's Survival Guide. Susan left a comment on my blog yesterday and I asked if she could share a bit about her son Nat's move into adulthood (photo right before his prom). As the parent of a child who won't have the conventional job or college schooling,...

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The game of Scrabble

Something miraculous happened last night. My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging. But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities. He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he...

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A life of being, having and doing enough

I read about this book and my heart softened for a moment, and I took a deep breath in and out. Doesn't it sound grand? A life of being, having and doing enough. Wouldn't it be sweet if we felt we were 'enough' as parents of children with disabilities and that our children were 'enough' as well? Not 'enough' in the sense of 'good enough' -- but really, we wish we and they could be 'better' -- but 'enough' in the sense...

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Quick update

I was fascinated by this blog by Gina Gort who took a 10-day 'retreat' away from her family, which includes three children, two of whom have disabilities: Return to myself. It sounds wonderfully restorative. We are holding a planning day for Ben on April 9 with the help of facilitators from Community Living. This is a two-hour session where we bring together some key people in Ben's life to look at his strengths and dreams and how we can support him in leading a rich adult life. If you've done this kind of planning, do you have...

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An open letter to parents

I'm delighted to share a letter written by Caroline McGraw (left) to her parents, William (back left) and Donna Fischer (right), in which Caroline recalls how her parents have cared for her younger brother Willie (back right), who has autism. Caroline writes about “how to see disability as opportunity” at A wish come clear. An open letter to parents: On what your children remember Dear Mom and Dad, As your 28th wedding anniversary...

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'In some ways we have a stronger family unit'

This is part of a BLOOM series of interviews with parents who have more than one child with a disability. Andrew Levin (above centre) is dad to Kenneth, 17, and Cameron, 14, who both have autism. Thanks Andrew! Louise BLOOM: How are the boys affected in everyday life? Andrew Levin: They’re fully functional in terms of changing, toileting and eating, but they can’t be left to their own devices for any length of time. Kenneth...

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Five simple ways to show love

Caroline McGraw posted on BLOOM recently. She has a fabulous blog called A wish come clear: how to see disability as opportunity. She has a younger brother Willie, who has autism, and she is a program director at a L'Arche in Washington, DC. L'Arche is a non-profit, faith-based organization that creates homes where people with and without intellectual disabilities share life together. I liked her Valentine's Day post: 5 simple ways to show love...

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How our marriage beat the odds

I was captivated when I read Heather Hamilton's blog: Diary of a Supermommy. So imagine my surprise when I looked out my office recently and saw Heather (above) and Zack (left) in Holland Bloorview's library. It was a wonderful meeting and now I have a fabulous guest blog to share that I'm sure many of us can relate to. Thank you Heather! Louise How Our Marriage Beat the Odds By Heather Hamilton Marriage...

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In Donna's book, a good life=loving relationships

In The Four Walls of My Freedom, Donna Thomson (centre) recounts life raising her son Nicholas, 22 (front left), who has cerebral palsy and requires 24-hour care. Donna is married to James Wright (back left), the High Commissioner for Canada in the UK, and has a daughter, Natalie (right). Donna generously shares her thoughts on how one can find freedom, choice and wellbeing within any set of life circumstances, including severe...

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The assessment

I met with the psychologist yesterday. She had been doing some testing to see whether Ben was capable of academic work -- at his own level -- as we try to find a better school placement for him. She used multiple choice, picture-based tests. The first test showed a picture and four different spellings of the item (e.g. glass, glase, glas, glash). He scored at a Grade 3 level. She then did a reading comprehension test where he had...

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A lifeline

I read a post on Hopeful Parents that resonated with me. It was called Get in the pool and in it, the author likens a period of struggling to support her son to drowning. "The Instinctive Drowning Response – ...is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind."  How many times...

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Allen Shawn's recollections

I mentioned a review in the LA Times about Allen Shawn's new memoir: Twin. I bought the book on the weekend and wanted to share a passage. Shawn has a twin -- Mary -- who was diagnosed with autism and institutionalized at age 8. Shawn is a composer and son of William Shawn, a legendary editor of the New Yorker. I will probably always have to make a conscious effort to connect the Mary who is a part of my life...

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'I'm part of a whole new world'

I heard Chris speak at a workshop here at Holland Bloorview. So I was thrilled when he agreed to write a piece for BLOOM. I’m happy to say that since this story was published, Chris has achieved his dream of moving into the non-profit sector and works with a literacy organization. Thank you Chris! Louise ‘I’m part of a whole new world’ By Chris Beesley My son's name is Mitchell. He's nearly 16 years old. Most 16-year-old boys...

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This and that

Claire at Life with a Severely Disabled Child posted a link to this interesting e-zine called The Complex Child. I haven't seen it before. For any New Yorkers out there, The Sprout Film Festival has posted its schedule of 50 films related to developmental disability this April. And I was interested to see this LA Times book review of the memoir Twin, by Allen Shawn, the composer and son of legendary New Yorker Editor William...

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