The best advice I have for you is to get involved with your local chapter of the Autism Society of America. Network with other parents there. Or go to www.wrightslaw.com and click on Yellow Page for Kids. Then go to your state. There will be a long list of special education groups there. See if there is an Asperger's organization in your area. High functioning PDD-NOS is very similar to Asperger's. I'd also get your son involved in local organized sports and/or scouts and/or 4H. Read up on teaching him social skills. Have your advocate help you get Parent Training in the IEP.
A good advocate can help you access MORE help in school. IDEA 2004 says that the schools are obligated to give kids FUNCTIONAL skills that will help them transition to "and independent life and economic self-sufficiency." How can your child be independent if he can't tie his shoes or zip his jacket, even if he CAN hold a pencil?
I have been *blessed* with a son who was diagnosed with PDD (NOS) this past Fall. He's 7 now, and has been on an IEP since preschool when his teacher insisted the public school provide him with support. I've recently hired an educational advocate who has done a great job ensuring my child gets what he needs at school.
Now how do I ensure he gets what he needs outside of school?
His pediatrician has made no recommendations. He is really a borderline case of PDD, has tested in the "gifted" range for his IQ, so he does OK on his school work. However, he hates school, is prone to mood-swings, has trouble focusing, trouble with self-help skills, trouble sleeping,... you get the idea. His PT at school says their obligation ends with getting him to navigate the halls safely, but he clearly needs much more than that.
Is there some kind of consultant I can hire or have assigned to help me navigate the different treatments/therapies available?
Thanks so much for any and all feedback!
Wow, thanks tzoya. I've gone ahead and contacted the ASA chapter in MA with the same message. The only thing I found at wrightslaw was a BBS that was very exclusive to Aspergers. Do physicians diagnose PDD-NOS when they can't quite pin it on Asperger's yet? Because I think he might fit into that category as he gets older, but right now the traits are just so mild. I've read the diagnosis for each on the AMA site, but I guess I just don't understand how they relate.
Parent Training - that would be great! I've sent a note to my advocate on this, and on IDEA 2004, as I haven't yet signed his IEP for this year. I'll contact the school, too. It seems his file has been randomly pulled by the state, and it turns out that the school slipped up in a few areas, so I think they owe me one.