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Hi Terri:
No, I am just outside of Boston.... pretty far from Kansas! I have several friends with kids with PWS due to the local chapter of the association but none of those kids have the autism issues. Of course I also know many families struggling with autism but without the Prader-willi piece. I did go to the national PWS conference last summer when it was at Niagra Falls area and met a few families with dual diagnosis. I also go to the NY conference every year but they don't target too much of the autism problems, but some of the behavioral seminars are helpful. Do you go to any of the conferences? I'm not sure where the next national is, I couldn't do texas this year, too far and $$$ for me right now.
It would be nice to meet up and share ideas and support if any of us can make it to the same conference!
Renee
-------------- Original message --------------
From: "Terri & Howard Schlange" <familyof4@...>
Renee,That's awesome that a child could start speaking at age 10! That gives me some hope!Do you live near Kansas? That's where we are at - about 30 minutes from OK & 1 1/2 hours from MO.TerriMother of Patrick, age 9 with PWS & autism----- Original Message -----From: renee broganSent: Thursday, August 16, 2007 7:08 AMSubject: Re: [pws-autism] Not sure what to do...
My son Jacob is 10 and also has vitually no speech, just mama and car. I agree with you , Terri, he has so much inside and is so bright in so many ways. His memory amazes me as he will point out an exit on a highway (that he's only been down once or twice) and will remember it is the way to summer camp or the exit Dad took him to Nascar or the Wiggles. His lack of communications skills is frustrating and does cause bad behavior. We are working with a picture system and hoping to move to a voice output device. I will never lose hope, a girl in his class just began speaking this year, age 10, and is progressing really well. I have heard of Tito, his mom is an inspiration!!!! Renee----- Original Message -----From: Terri & Howard SchlangeSent: Wednesday, August 15, 2007 9:41 PMSubject: Re: [pws-autism] Not sure what to do...
I'm sorry, Robin. It's really difficult when our children can't speak. Patrick said a few words, but lost them all by age 2. It would make our kids lives easier if they could say a few words like "drink", etc. I don't think Patrick will ever speak again.Have you heard of Tito, the autistic boy from India? His mother taught him to write at age 3 or 4. Tito has never spoken, but writes (unassisted) beautiful poetry & communicates with others by writing. He's a hand-flapping child that looks like he doesn't know a thing. I think our children are much smarter than they can convey. Tito says the best thing we can do is to "believe" in our children. I have an article I can e-mail you if you don't have it.Terri
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