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504 plan and other stuff

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thanks, everybody for your suggestions about what to include in Sam's IEP. I do

strongly feel he's doing well because of the services he's receiving - we'll see

how it goes. In my gut, I feel he'll still get good services from our district

even if he's on a 504 plan but also realize there's more protections for him

under an IEP.

I've lost the post from the person who gave the information about the genetic

deafness study being done at Medical College of Virginia and Galludet. Whoever

posted it - thanks! I wrote to them - boy, are they interested in us! You

know, I've always thought our family followed a compelling x-linked recessive

pattern (so the girls are the carriers and only their sons show up having

hearing loss) but then someone at rockefeller University (who was doing a

connexin study) told me there were no x-linked recessive forms of deafness. Dr.

Nance, who's the principal investigator of this (MCI/Galludet study) begs to

differ. In fact, there's a form of genetic deafness that's x-linked recessive

that is a mixed sensorineural/conductive loss. And it's predominantly in

Appalachia (and guess where my whole family is - West virginia!). So I have

tons of homework to do finding out about great-grandparents and if they had

hearing loss. It should be an interesting journey. Given that my two boys, my

brother, my nephew and my uncle on my mom's side all have a similar hearing

loss, I think there's something going on. I'll keep you posted.

My life would be *so* boring if my kids could hear! :>)

Have a nice weekend everybody.

Barbara

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