An entry I wrote recently about Schuyler and her device is being featured in this month's Parents' Corner column over the AAC Institute site. The AAC Institute is a not-for-profit advocacy group for augmentative and alternative communication (AAC) users. AAC includes a wide range of technologies, including the Big Box of Words.
I'm really happy that Robin Hurd at the AAC Institute asked me to contribute. She's a well-known advocate for those with developmental disabilities and a parent of twins a little older than Schuyler who both use communication devices. She knows her stuff.
(Edited to add: There's a good interview with Robin Hurd at The Autism Life where she explains some of the concepts behind AAC.)
This kind of advocacy for a cause that is responsible for Schuyler's second chance at a full life is exactly the sort of thing I hope to accomplish more of when the book comes out. All the fame and wealth and hot young English major groupies are just the icing on the cake.
3 comments:
Mrs. Hurd's statement about children's being able to recognize a color on a flash card but not transfer the concept to other items of the same color (and the impulse for a teacher to classify it as "progress" on an IEP goal sheet) was very thought-provoking.
I know a child who was diagnosed with PDD/NOS, who attends school under the umbrella of what is alleged to be a very well-thought-out IEP, and that's exactly what happens with the progress reports concerning his literacy skills.
He can read a few words and phonetics on his many flash cards, but cannot make the connection between the card content and, for example, the "Now Playing" menu on his beloved TiVo. Any program listed that happens to begin with the letter S, for example, he believes is SpongeBob Squarepants. When he selects the program, insisting that it's his cartoon, and it turns out to be Sex and the City, he becomes horribly frustrated and combative. But according to his IEP, he's right on track. It's a nightmare for both the child and his parents.
I think your blog, your book and all your doing is going to do the BEST advocacy possible for Schuyler and her Monster. The word needs to get out there and money need to be raised, so more research can be done. In the school I work on, I sit on the IEP Team and the 4 Speech Therapists did not have a clue about this, never even heard about it. Sad to me. Even one child with this, is too many and the education system and IEP providers need to know this. Should be a MUST read for all providers.
My daughter (Nooze, age 6) has just asked if Schuyler could be her sister.
I read your blog to her from time to time, and she thinks that your daughter ROCKS.
Just so you know - your daughter has a far greater influence than you could ever imagine.
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