Aspies For Freedom

Hello,

I was referred to this site from another Asperger Forum I frequent, Wrong Planet.

I am the mom to a wonderful 8 year old boy, named Noah.  He was originally diagnosed with NVLD (Nonverbal Learning Disability) and ADHD about a year ago.  I knew in my heart this was incorrect.  He was just re-diagnosed (by 2 different doctors) with Aspergers at The Center for Autism Spectrum Disorders.

He currently has regular sessions with a psychologist, and will be starting occupational therapy this month.  He will also be seeing a speech/language pathologist and is part of a social skills group at school.

Currently, his school situation is a nightmare.  His teachers are clueless and his IEP doesn't seem to be helping all that much.  I will be meeting with his school yet AGAIN, to try and revise his IEP.

Anyhoo, I'm thrilled to be here and am looking forward to meeting some people who can relate

Peace,

Kat

Hi Kat, and welcome!   I've been here for only a few weeks now and find it's a really good place to be.  My son is 6 years old and is waiting for assessment by the Autism Team, but his school, the educational psychologist (informally) and I  all reckon he is Asperger's.  I'm cool with that, and AFF has been really helpful in broadening my understanding of all manner of aspie issues and ideas!

Lots of good people here!

Hi Marcia,

Thanks for the warm welcome.  Good luck with all of the testing.  Did your insurance cover it? I had to pay out of pocket and it cost an arms and a leg!

The psycho-educational testing I had done was covered, but the person who did that diagnosed him incorrectly with NVLD and ADHD.

Welcome aboard. The schools can give quite a hassle. May I recommend you get assessments from the psychologist to bring with you to the meeting for the IEP. If you do private speech /Ot I would have them write up evals too. I found what held more weight was my sons evaluation from his neurologist.  Pays to be outspoken too. I am typically quiet but at the IEP meetings I am anything but - perhaps coupled with the evals my "new" approach helped. LOL I had to get a few evaluations with recommendations before my son got a program I was happy with . They can give you the run around unfortunately. They just try to save money

Thanks for the reply.  I have brought assessments and recommendations from my sons psychologist and neuro-developmental pediatrician.  they had even written letters strongly advising my son have O.T. and be seen by the speech/language pathologist.  the school basically laughed at me and said my son didn't need o.t. (even though they have given him an alphasmart, because he has difficulty with written output).

i just faxed his school a report from his 2 new doctors from the autism center, since they are strongly suggesting the therapy as well.  you better believe i'm not gonna give up.  i am far from quiet lol i think i drive his school crazy.  i have no choice.  i've had to inform them about many things, even the reason why my son stims in class.

We're in Scotland so all these assessments and any follow-up appointments are provided by the National Health Service, i.e., free of charge.  The process was really kicked off by the school who had noticed that he was banging his head off hard surfaces, like brick walls.  He's always done that and I was told when he was a toddler that he'd grow out of it.  Anyway, I went back to the Health Visitor attached to our GP (doctors' surgery) and he contacted the School Nurse who visited me at home while my son was at school, she then refered him through the NHS to the Community Paediatrician and she then made the referals to SLT  and the Autism Team.  We haven't had to pay for anything, nor would we expect to.

Have to say, I've been pretty horrified reading through some of the threads in AFF about the really basic healthcare Americans have to fund themselves or through insurance.  We moan a lot about the NHS and it does have its problems, but I think we forget often how fortunate we are to have it.

wow!! you are lucky! his initial eval was $1200, but covered by insurance.  the autism testing was going to be $4500, but they were able to use the eval i had so for the ADI/ADOS and follow up appointment it was about $1800.  count your blessings..

Sorry to hear they are being like that to you and your son. A friend of mine just had her sons OT taken away. My son only was getting 30 min and he has sensory issues gallore. (He was getting 2 hours a week in Birth to 3). Now, I have him getting a 45 min a day sensory diet - its broken up in 15 min intervals. He needs those breaks to concentrate and organize himself. I had to ask for it though. I hope you can get what your son needs at the meeting. Keep us posted. I know I drive my sons school crazy.LOL I keep them on their toes. They definately know who I am!

That is great. I wish the assessments in US were free.

tnx i will def keep you posted.  i am just waiting on his school to get back to me so we can revise his iep.  they take forever!

What would happen in the US if you didn't have health insurance and couldn't afford to pay for the assessments?  Would your child just have to struggle on without any professional evaluation, help or support?  Or is there free, means-tested health care?

Question, questions!

I dont know - probably would have to pay privately. I know there are people with no insurance at my sons private ot/speech and they have to pay privately for it.

Yeah thats all part of FAPE (Free Appropriate and Public Education ) . Like Kattoo13 said usually what the school finds appropriate is not what the parents do. They try to get away with the minimum. Also if the school pays for evals you have to pick someone they recommend.

But if parents in the US could not afford to pay privately for services, I would imagine they'd have to do without, which is a pretty terrible situation. That's why I firmly believe in a public health insurance system and free or heavily subsidised testing for conditions such as Asperger's.

Oops, I meant to say a universal public health system like Medicare in Australia.