[crauckis]

Sandy,

First off - you're not alone.
My daughter, now 25, was epileptic before birth and flummoxed the doctors for most of her life. The correct diagnoses took many years to get, but include epilepsy, Asperger's, and schizophrenia. Schizophrenia and autism are more common than thought. Autism and schizophrenia are extremely difficult to separate out because their behaviors can be so interchangeable and you can't always tell which is from what. Add Oppositional Defiant and ADHD into the stew, perseveration and distractibility both at the same time, OCD may be another culprit, and you've got a mess on your hands that almost defies diagnosis.

Your daughter already knows all the horror stories about doctors and your granddaughter that you don't already know about first hand. I can tell you because of the wonderful advances over the last 20 years, and I may be able to suggest some guideposts to mark your road ahead, and I can dig around for resources you'll need.

Off the top of my head:
Univ. of Florida is (or was) doing research work into milk, autism, and schizophrenia.
The best Asperger's site around used to be oasis.com but I'll have to find it for you.
Autism listserv groups will probably be more help to you than any other lay groups. Autism people have to deal with everything and often are very very knowledgeable.
Univ. of Massachusetts (I think they're the ones) have a research project underway into Asperger's in children. They're very good.
"Dual-diagnosis" clinics are the places that technically deal with mental-health issues in mentally-retarded people. I know that's not the case with your granddaughter because Asperger's/HFA generally indicates normal or above intelligence. But normal intelligence for a kid like this often means that it goes in at a high level but often gets "stuck" (I've never come up with a better word) in there and may come back out at a low level.

The sooner you have a county MRDD caseworker for your granddaughter the better, but even that's gonna take some time. They work with people with all sorts of disabilities, not just MR.

Please remind your daughter - and yourself - that nothing is more important for you to remember than the fact that:

- - - YOU are the EXPERT - - -

Professionals will try to convince you otherwise - don't let them get you down. You are the expert; they are nothing more than merely professionals.

Geez, you guys are in a real mess. Sandy, here's my private email address (please don't give out private e-mails in posts. Use the pm function to exchange personal information debknechtel) If you let me know what state you're in, I can probably find the resources you might start with.

-Chis.