Wednesday, May 25, 2011

Hopeful parents, Ben's new love and links

I'm over at Hopeful Parents today: A letter to myself.

Guess what? Ben is in love. With Jessie, the red-haired, cowgirl in Toy Story 2 and 3. He likes to listen to her sing that sad song "When somebody loved me" and carries an enormous Pixar coffee table book around so he can look at her picture. He also likes forwarding the Toy Story movies to the places that correspond with the photos in the book. And although he finds typing an e-mail painstaking, he is always up for writing something about Jessie. Usually: I love Jessie. He thinks she's nice and funny and brave.

I have a meeting on Friday with the folks from the Toronto Catholic District School Board. I hope it proves fruitful.

Here are some interesting links:

Our daughter's Down syndrome has taken us on a beautiful journey

Developmental disability affects 1 in 7 US kids
The Pediatrics journal article that covers the study quotes it as 1 in 6.

Penalized for working -- disabled lost 50 cents on every dollar earned

The book
BLOOM guest blogger Jen Johannesen is working on a book. I love the themes she's exploring:
Since Owen's death, I have been capturing some of our stories in order to share these experiences with fellow Canadians. Although Owen was an extreme example, I believe our story touches on healthcare themes important to Canadians, including system navigability, controversial application of technological intervention and the growing burden on the patient to case-manage themselves.

Morgan's Wonderland caters to visitors with special needs


I can't wait to read Jen's book!
One of the things that struck me in The Four Walls of My Freedom was the comment that families know 'Family Centred Care' = "Do it yourself care'

we love Jessie at our house too.

Louise - your letter to yourself was spot on. I could relate to much of what you wrote. Fabulous job!