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Thanks, I had always thought Micah showed many Autism traits, but never really thought about getting the dx for it. Just figured it was the PWS showing up. It seems alot of the chromosomal syndromes have overlapping symptoms. Micah is also ADD. He is on Rilalin LA. Believe it or not, that seems to help so much with the behaviors and the food issues. But also seems the pro's don't think it is ADD, its just again overlapping symptoms of PWS. Guess we'll never know for sure.
Thanks again,
Cindy
----- Original Message -----From: JenniferKSent: Wednesday, August 20, 2008 3:51 PMSubject: Re: [pws-autism] Just got the duel dx
Hi Cindy,You're welcome. At first I felt a little uncomfortable playing up the autism piece since Nolan's absolute primary Dx is PWS, but since so many people don't get the PWS piece aside from the food issues, I lean on their understanding of autism to drive many points home, especially when it comes to behaviors, social issues, lack of interests, and sensory needs. These often are areas of overlap with PWS anyway, and when I approach it from the autism side of things, along with his official Dx documentation, people seem more able to wrap their minds around those issues as they relate to the child because they have attended autism training, seen other kids with it, etc. Our school district is setting up a special autism support group with a behavior specialist; since Nolan is the only child in the district with PWS, we would not have received this type of help with only the PWS Dx. FYI, we got the Dx from a state-certified psychologist and she did a very thorough report with justifications for her multiple diagnoses, so no one can question anything.Good luck!Jennifer----- Original Message -----From: Cindy BrooksSent: Wednesday, August 20, 2008 3:26 PMSubject: Re: [pws-autism] Just got the duel dx
Wow, thanks for all the info. Will check into a Texas group.Cindy----- Original Message -----From: JenniferKSent: Wednesday, August 20, 2008 1:58 PMSubject: Re: [pws-autism] Just got the duel dx
Our son Nolan has a dual Dx of PDD-NOS (autism spectrum) along with PWS. He has an IQ in the normal range. The school seems to be taking notice and modifying his curriculum and behavior approaches much more than when he was "only" PWS. We also have a big program here in Wisconsin that provides 20 hours of in-home therapy related to social and play skills for children on the autism spectrum, that is completely paid for via an Autism Waiver at no cost to the parents, so therapists will come to your home and work with your child on anything related to the disability such as social and play skills, increasing interests, turn taking, potty training, and ABA stuff. Ask at the state level whether Texas has such a program. Google "autism Texas" and contact your state autism society or local chapter for advice. Services vary widely depending on where you live. My sister's son has Asperger's (autism spectrum also) but lives in Maine where no such program exists. Overall, though, there are many programs available for kids on the spectrum that are not available for PWS because it is so rare. Kids with autism definitely get more services than PWS because it is so much more widely known. And, you can insist on specific methodologies with the school such as Direct Instruction and Discrete Trial Method because those are research-proven methodologies with autism; not so for PWS. We are sad that Nolan qualifies as having an autism spectrum disorder, but acknowledging the dual Dx and putting it on all his paperwork including the IEP has made a big difference in many ways for getting him what he needs. I also have been able to tap into funding sources available for families with a child on the autism spectrum; I found a non-profit agency in our state by searching online, applied and received a $500 grant toward autism-related services, most of which overlap with PWS, such as aquatic therapy, hippotherapy, sensory integration techniques or equipment, craniosacral therapy, social skills training, etc.Hope this helps. Best wishes,Jennifer K.Cedarburg, WImom to Amanda, 6 and Nolan, 5 (PWS by deletion plus PDD-NOS, ADHD, SID, ODD)----- Original Message -----From: cjpeek58Sent: Tuesday, August 19, 2008 9:33 PMSubject: [pws-autism] Just got the duel dxHi, I think some of you know me. I am Cindy and Micah is my son. We
are in Santa Fe, TX. Micah just had some testing after school was out
this past June. The school was doing some testing for him going into
High School this year. Ugh...... Anyway, the school psychologist has
kinda taken Micah under her wing and she wanted to test also for
Autism. I talked to her awhile ago and she said she was going to add
Autism to his IEP. We will be scheduling an ARD for that. But my
question is what kind of help can you get with the Autism label.
Micah does have PWS UPD but he is not MR. He is about 15 points to
high for MR. Anyway we will take all the help we can get. We have had
none to this day. Just trying to get an idea of who is in this group
and what you have done for your kids.
Thanks,
Cindy Brooks
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