Happy Halloween from Ben!

I'm not sure if I mentioned that Ben went to his high school Halloween dance on Friday night. Apparently a group of girls asked him to dance, so he did. Ben transferred to a regular high school in our board in September. It has a deaf/hard of hearing program where the students have some classes on a separate unit and others in the mainstream with interpreters. I just received this message from the head of the program. She sent it to all of his teachers...

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Silent Sunday

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Book series brings Madi to life

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of...

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Armadillo update

Thanks everyone for your wonderful ideas and links. Alas, I was not able to come up with an armadillo costume. I did call some costume places and Ben and I went to one today in the hopes that they would help us piece something together that could pass as an armadillo. No luck. We were told that that unusual-looking creature would be a "custom-build" and would require lots of advance preparation. So, instead, Ben has decided to be...

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Armadillo anyone?

Ben has been 'thinking' on a Halloween costume. It had to be an animal, he said. Today he decided. At first he told me it was an anteater -- he told me this by finding a Zoboomafu show about anteaters. Then, just as I was putting out word that I needed help on an anteater costume, he brought me the voice software on his iPad to let me know that it wasn't an anteater after all -- it was an armadillo that he wanted to be. Even though Halloween...

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No more accidents!

Many of you remember Tommy Glatzmayer (left) and the book he wrote with his mom Nathalie Wendling: Melanie and Tommy have two pet rats and one syndrome. Nathalie just sent me this exciting update on her daughter Melanie (right), 11, who has Cornelia de Lange syndrome. For years, Nathalie has tried to toilet train Melanie. This summer it happened. Nathalie tells us...

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The Anti-Romantic Child

An excerpt from this book appeared in Newsweek a few months ago and was blogged about on the Chronicle of Higher Education. Here's what Publisher's Weekly had to say about Priscilla Gilman's new memoir. Have you read it? Louise  The daughter of literary agent Lynn Nesbit and the late theater drama critic Richard Gilman crafts a beautifully sinuous and intensely literary celebration of the exceptional, unconventional child. Her son, Benjamin,...

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Goodbye mom, hello therapist

A Ryerson study of 20 mothers of children with autism looks at how mothers sacrifice their roles as parents, spouses, friends and professionals in order to become full-time 'therapists' to their children. "Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday. Through qualitative interviews with 20 women, most of whom identified themselves as...

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Notes from a dragon mom

Don't miss this piece about parenting a child with a terminal illness in the New York Times: Notes from a dragon mom "No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t."...

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Listen to the children, ethicist says

We underestimate the ability of even young children to participate in health-care decisions and need to recognize them as part of the decision-making team with their own preferences, said Franco Carnevale, a Montreal nurse, psychologist and clinical ethicist speaking at the 2011 Canadian Association of Pediatric Health Centres Annual Conference yesterday in Ottawa. “The child has not been on the radar as a recognized decision-making agent,” Carnevale said. “I’d like to see a paradigm shift from adults making decisions about children as moral...

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Explaining disability

I hope to include resources on explaining your child's disability in the January issue of BLOOM magazine. I'm interested in any great articles you've read on this topic, or websites that can help parents come up with a simple, upbeat description tailored to different ages. Please post any resources you recommend we share with readers. Thanks! Loui...

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Homework!

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This and that

Ben's voice has changed! We had a friend over Sunday and she pointed out that it had dropped -- his high-pitched giggles are no longer high-pitched. I think we'd noticed this but not acknowledged it. When he came home from camp, he had a bad cold so his voice was husky. But then the cold went away and his voice continued to be deeper, lower. Here are some interesting articles. Louise Stutterer speaks up in class; His professor says keep quiet Disabled men at higher risk of sexual abuse than non-disabled men Has Down syndrome hurt ...

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'Don't change'

I read this quote this morning and thought it fit well with some of the themes discussed in Under the hero's cape and Outcomes: How to let go. "Don't change. Change is impossible, and even if it were possible, it is undesirable. Stay as you are. Love yourself as you are. And change, if it is at all possible, will take place by itself when and if it wants. Leave yourselves alone. The only growth-promoting change is...

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When nothing can mean everything

Check out this great piece on Motherlode, which seems written in response to some of the discussion we had to the posts Under the hero's cape and Outcomes: How to let go. Here's how it begins: "I would do anything to help my child." Who hasn't said that and followed up their words with actions? But the parents of special needs children get to prove it on what seems to be a daily basis, since there is always a new therapy, medication, school or tutoring option being presented to us. And we often leap before we look. Even when a program doesn't...

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Meet Mitchell

Here is a second guest blog from Lori Beesley, who sits on Holland Bloorview’s family advisory committee. Every year Lori goes into her son Mitchell's school class to educate the students about Fragile X. She shares her speech below. I love the way she describes things about Fragile X and Mitchell (above) in a way that any child could relate to. The day she gives her talk, a note is sent home to parents, including Lori's...

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His hero

This just in from Ben's English teacher. He is in an English class with other kids who are deaf and hard of hearing: "Ben is doing really well in English class. He's reading the same material as the rest of the students. I gave him a bit of homework which he rolled his eyes at!!! I asked him if he could name 3 people that are his heroes. He said right off the bat that his dad is his hero! He is to give 3 reasons why he thinks each...

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'I don't remember when I realized I was different'

'I don't remember when I realized I was different' By James Shea I sat in the bleachers at the Dean Dome in Chapel Hill, N.C. last year. Erskine Bowles, the former president of the University of North Carolina and a presidential appointee to the National Commission on Fiscal Responsibility and Reform, gave the keynote address. I scanned the rafters and saw the multiple national championship banners. “What a journey,” I thought...

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Outcomes: How to let go?

An interesting dialogue follows Friday's post about Jennifer Johannesen's book: No Ordinary Boy. Jennifer notes that her pursuit "of optimal ways of being in the world" for son Owen (that pursuit that I believe every parent undertakes to give their child the richest life possible) was worthwhile and she has few regrets because of it. But she notes that she could have approached intervention in a healthier way, one that didn't consume and exhaust her and lead to burn out. "I would have had a healthier/happier time of things if I wasn't attached...

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