Susan's Blog

Wednesday, November 28, 2007

Fairy Godmother

Now I’m back to thinking about setting up a foundation/writing a guide. What would be the most helpful, what is the most needed? Here is my list:

1) A resource that gives parents a few clear paths to follow, at every stage of development, for their atypically developing child (without being arrogant-pricklike). Diagnosis, school planning, IEP negotiating, middle school planning, resources for having fun, transition, vocational, independence-training, adulthood. A guide that gives parents a meaningful structure to explain to them the stage they are entering, a platform to cling to.

2) A foundation that awards grants to families who need help with some aspect of family life. Grants to aid families in Siege Mode (when they are in crisis related to autism), grants to aid independence, grants for therapy for family members.

3) A foundation that awards grants to families trying to have fun, in the midst of crisis. Doesn’t have to be autism-related.

4) A workshop/center that offers fun to disabled kids, that is not billed as “therapeutic” or “pragmatic” or does the standard van-to-bowling-alley (not that there’s anything wrong with that). You see where this is leading? A place for kids to be kids, especially girls. My belief is that disabled girls are probably steered away from feminine fun, and that they sorely miss that stuff. Do they learn how to feel beautiful, do they ever feel empowered from within or without? That is what I could teach them, through bellydance and perhaps some personal shopping and make-up lessons. Makeovers! Ever since I saw Cinderella, my very first movie, and she transformed, bibitty-bobitty-boo, into a princess, I have been enthralled with the power of the makeover.

I could call it: Fairy Godmother Foundation: Because everyone deserves to go to the ball.


All awesome ideas. I wish I could peek in on your belly dancing class. I just wanted to tell you that a major health care center in Duluth has been putting a list of resources together for families that need them. Finally! Doctors who care. Also, Chance is getting ABA therapy from the Minnesota Autism Center..and we are in the process of organizing a meeting to let them get into his school. This is a big deal because they have never done this before, so says the principal. It feels good to be a pioneer like this. Maybe one day they will be ready for some kind of public gathering to further spread the word. I’ll be keeping you in mind as a speaker whenever the time comes. It’s the Age of Aquarius! -Tina G.

— added by Anonymous on Wednesday, November 28, 2007 at 12:34 pm

Love it. Like Make a Wish but for autism?? I just read on some obscure forum a parent saying, “Autism? Don’t tell us about how hard autism is until you’ve had a child with cancer.” Sigh…. Because our kids are beautiful and not under chemo and such, many people have no idea the challenges that come with a diagnosis. Like the rate of drowning. The danger of a Target parking lot for a child who doesn’t understand danger. Or a day at school, where other students can pose a real threat. It took much of my resolve to just click off and add my two cents…. We need a slogan like the gay movement had, “We’re here. We’re Queer!” What can we use for autism? Oh, I know! “We’re here. We’re also Queer (but in the old fashioned definition not the sexual one.)” Too long??? šŸ™‚

— added by Kim Rossi Stagliano on Wednesday, November 28, 2007 at 4:56 pm

Hey Tina,
I may be out in MN this June, stay tuned! Great news about Chance, you go get ’em!!!!

And Kim: How about “Autism: We are only doing what our neurology says we aut”

— added by Susan Senator on Wednesday, November 28, 2007 at 5:27 pm

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