Is the universe trying to tell me something?

Two weeks ago I wrote about how Ben had deleted the Proloquo communication app off his iPod. We didn't have a recent backup, so I spent hours recustomizing it – deleting unnecessary vocab, moving categories around to make it easier to navigate, creating new folders and words, syncing new photos so that Ben's favourite Star Wars area grew to epic proportions. We had just started to use the characters in those photos as a basis for writing simple...

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Sweet sixteen

My son turned 16 on Friday. His party was at ChuckECheese. An odd location for a teenager, but my son's developmental age is much younger. I wish it hadn't bothered me. I was happy to see Ben happy. He loved the games, the pizza, and seeing ChuckECheese in costume. But a part of me was embarrassed that my 16-year-old wanted to go to ChuckECheese. Ben is the size of a six- or seven-year-old, so it wasn't like he stood out particularly. We've...

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The big picture

Check out this gorgeous photo series of the Paralympics by the Boston Globe....

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When siblings step in

"What keeps us awake at night is knowing we won't be here forever. And always questioning whether we're doing the right thing. We want Carol to have a life that is rich and includes all the things she does and one where she is protected – whether we're there or not." Pat Ellingson (left) with sister Carol (centre) and partner Carolyn (right) The above passage is from an interview I did with Pat Ellingson, creative head of children's media at...

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Self-care: It's not a frill!

Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin became one of those moms when her younger daughter was diagnosed with autism 14 years ago. As she traipsed from specialist to specialist, she noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter....

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Now you see him, now you don't

It’s been cool to see families in the blogosphere reporting on their kids’ trials of different communication software that runs on an iPod. For the last month, my son Ben has been using Proloquo2Go, which combines categories of words, picture symbols and photos, text-to-speech voices as well as a keyboard and a 7,000 word default vocabulary. When you click on the iPod’s “app” screen, the owl pictured above appears alongside photos, iTunes and...

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The sleepover

Our guest blog today is about a big event in every kid’s life – the first sleepover! It’s written by Marcy White, mom to Jacob Trossman, 7 (above, with his friend Batsheva). Batsheva also attends overnight summer camp with Jacob. You can read about Marcy’s work to raise research funds for Jacob’s rare myelin disorder at www.curepmd.com. Thanks Marcy! Louise The sleepoverBy Marcy White My son Jacob, 7, had his first sleepover on the weekend. It...

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'I'm still on the bus'

As a kid, Jonathan Mooney had dyslexia and couldn't read. The message that he wasn't normal led him to hate himself. A high school guidance counselor suggested he'd end up flipping burgers. He defied expectations, graduating from Brown University and publishing two best-selling books. The Short Bus: A Journey Beyond Normal chronicles his trip across the United States in a yellow special-ed bus where he meets children and adults who share one...

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The tyranny of two words

Mental retardation was coined as a medical term over 50 years ago—a then neutral term to replace idiot, imbecile and moron. But a quick trip to the thesaurus reveals that the words today mark a person as “abnormal, subnormal and deficient.” And any kid can tell you that the shortform “retard” connotes someone who’s useless. Special Olympics is holding an awareness day today to encourage people to give up use of the R-word in casual, everyday...

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Worth a look

Hope you find these of interest—I did! The opportunity of adversity The thesaurus might equate “disabled” with synonyms like “useless” and “mutilated,” but ground-breaking runner Aimee Mullins is out to redefine the word. There's no such thing as the perfect child is an essay in the Globe and Mail by Edmonton writer Sue Robins, a mother we feature as a trailblazer in the upcoming issue of BLOOM. Here, Sue talks about troubling parent attitudes toward her son with Down syndrome and about one particular mom who asks why she didn't have...

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