April 10, 2008...5:55 am
How Much To Share…
about Maddie’s specifics.
I no longer give Angelman Syndrome information out to people who work with Maddie. It is all such a downer, such a huge laundry list of her deficits, its truly overwhelming to read, . . . I don’t see how it benefits her at all.
When people look at her, I want them to see her, a ten year old girl who is happy, who likes drawing and music and people. I don’t want them to be “looking” for all of her faults. Sheesh if somebody were to list all my deficit areas and hand it to people before they ever meet me, I’d seem pretty bad too! Everyone would.
I say its a genetic disorder, she has fine and gross motor delays, significant delays in verbal expressive language. They have an opportunity to look it up if they choose to do so.
BTW- I never mention “cognitive delay”. In the theory of multiple intelligences, Maddie is probably smarter than I’ll ever be!
: )
1 Comment
April 11, 2008 at 11:04 pm
I went back and read a lot of Maddie’s story. It was so encouraging to see her videos where she was writing her name and talking.
I do understand the angelman syndrome, non-discussion. So many places mention low intelligence and the fear that others won’t try very hard or keep working with your child so that they can succeed and achieve at a higher level. When other things I’ve read say it is difficult to know intelligence level when they can’t really speak and tell you what is going on.
There are lots of things I’d like to say, but for now, I just wanted to say thank-you for sharing what you’ve shared. It is so helpful to others searching for information. I’d like to put up a website just for my grandson, but it would have to all be completely approved by my daughter.
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