My seventeen year old son was diagnosed last month with Asperger's Disorder. This comes, of course, after years and years of testing, interviews, doctors' appts, therapies, evaluations, etc., etc. I think many folks on this message board know what I mean! And I am grateful for the diagnosis because now just maybe I can be a better parent to him.
He is also bipolar, ADHD and MR. He was just discharged from an RTC after two and a half months. The recommendation of the staff there was that he needs to be in a group home (ICF/MR). But there don't seem to be any near our home and the MHMR agency in our county could only suggest we put him in a state school
At present, we are on a waiting list for an ICF/MR. I live in Texas so we are also on the waiting list for home and community based services (HCBS) which has 1200 to 2000 individuals and their families in line ahead of us. This means that I can't even get any respite care for 3 to 5 years! Yikes!!
I'm "not from around here" as they say, so a cross country move is not out of the question. I just need to land in the right place. I chose those two places because I have friends in those areas. There has got to be something better than this! I would surely appreciate anyone who lives in either Bucks or Putnam counties could share their experiences with schools, state run agencies, specific services, whatever. Your input would be most welcome.
Im not in either area so I can't offer you specific advice but I thought I would pass some links along that maybe might be able to help.....
Pennsylvania New York State Specific Resources Texas
Also, I wanted to let you know Unlocking Autism has a NATIONAL CALL CENTER 866-366-3361 and a Parent 2 Parent Network that will help connect you with a parent in a specific area to help with finding resources in that area.... Maybe they can help.
Michelle:
Thanks for asking. It has been a long, hard road but I'm hoping that I'm about to come into some sunshine. In the past eighteen months, I sold our home and we relocated, entered my children into three new schools, had two children in residential treatment and two kids to acute care facilities (3X). And that's only beginning! Anybody else out there shake a lot?
Thank you for the links. I will be sure to look at them.
Bridget:
Wow! I love NY
I am sitting here with the neuropsych report on my desk. One of the things his present high school doesn't have is a life skills class and good vocational training. Because he is rather high functioning, he doesn't qualify for special ed under MR (though the state MHMR has qualified him for services). He is such a brave kid, I know that he can do a lot more than anyone gives him credit for.
Just let me know what specifically OMRDD looks for when doing their evals.
We need current testing to prove either MR (70 and below), DD (Aspergers), a neuropsych ( stating that the Aspergers is nuer based) , school tests, testing of adaptive funtioning (Vineland II or ABAS or ABAS II are prefered). The scores on these tests need to be 70 or below.
Bridget:
Here are some figures for you. On WASI his full scale IQ is 67, VIQ 72, perceptual-organizational skills (PIQ) is 68. Quoting from the report, his DSMD profile reveals scores in the elevate range on the Critical Pathology Composit score. Specific problems sighted: withdrawal, diminished emotional respoinsiveness, dysthymic mood, impaired social interaction, communication and unusual motor behaviors (autism scale).
Sharon