October 12, 2009

Go Team Schuyler


Julie, Schuyler and I ("Team Schuyler", naturally) have decided to participate in the 2009 Childhood Apraxia Walk in Fort Worth, after following a link on organizer Anne Devlin's Facebook page. I realize that you may be struggling with the idea of me actually walking for three miles without there being some kind of automotive emergency or the actual breakdown of civilization. But this is a cause that goes right to the heart of us, because verbal apraxia is one of the manifestations of Schuyler's Bilateral Perisylvian Polymicrogyria.

It's the monster that keeps her from speaking.

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia.

The Childhood Apraxia of Speech Association of North America or CASANA's "mission is to strengthen the support systems in the lives of children with apraxia, so that each child has their best opportunity to develop speech". CASANA is the only charitable organization in the United States whose exclusive mission is to represent the needs and interests of children and families affected by apraxia.

We're hoping that if you live in the area, you'll join us for the 2009 Childhood Apraxia Walk in Fort Worth. It'll take place on November 15, 2009 at Trinity Park in Fort Worth. It will be a family-friendly walk with the option of a 1-mile or a 3-mile. If you register by October 26, you'll be guaranteed a Walk for Apraxia T-shirt in your size.

If you can't join us, we would appreciate your sponsorship. All proceeds from this event benefit CASANA's apraxia programs and research.

Seriously, we hope you'll be able to join us. You'll get to spend three miles with Schuyler (no more than ten or twenty feet of which will take place in a straight line, I suspect; she walks like a moth flies), and if my old, fat Robba the Hutt body fails me from the extreme trauma of walking three whole miles, you can point and laugh with a clear conscience and non-boomeranging karma.

TEAM SCHUYLER

6 comments:

Bluestem said...

And verily, they will know us by our t-shirts.

Pia said...

I hope you raise a TON! Alas, our Team J-man is small but mighty, and we are marching up here in Minnesota. With snow. Since Apraxia is the only diagnosis we are sure of, it is the one we feel the most connection to! Good luck!

Elizabeth said...

I am going over to sponsor you, now. My sister has a son with apraxia and I will let her know, as well.

Have fun walking. We're walking for epilepsy this Sunday -- I wish that curing these damn diseases would be as easy as walking.

-amylia- said...

you can do it! I signed up for the 5K Wisconsin AIDS Walk, although my main motivation for walking it was seeing Bon Iver play a free, live acoustic set.

With Schulyer by your side you'll be sure to finish--her enthusiasm is contagious. Plus, don't they have like donuts and shit at the end?

P.S. If I give to yours, will you give to mine that same weekend? 11/13 World Diabetes Day Fundraiser to Cure Diabetes: Donate Online at www.rayofhopefound.org/donate

farmwifetwo said...

http://autisticcats.blogspot.com/2009/10/autism-is-medical-condition.html

(completely fippant and sarcastic b/c they have no idea what Autistic disorder is truly like)

According to those with Asperger's and have real lives, speech delays are "behavioural and educational". We should celebrate her lack of speech not attempt to cure it.... (see middle of that link)

They drive me BATTY!!! Wish they were off scale with the DSM-V but I doubt it.

May you raise many $$$, may it help both your child and mine learn to communicate and speak.

Best wishes.

Annie said...

I am so super excited that your family is taking part in the walk! This is going to be so great for the kids! Liam is excited to meet other kids like him.

Anne Devlin