Question/ School-ASD Testing Issues- LONG

[Guest guest]

Hello all,

I'm about ready to start really losing my temper with the school system here in RI. I have tried to contact local ASD groups for help but haven't received any responses, and we are in need of some guidance. Desperately.

My boyfriend and I are raising his nine year old son, . fits 11 of the diagnostic criteria for an Autism diagnosis (6 is the minimum for a diagnosis), as I learned through my own experience with Autism and various developmental disabilities through my work (I work for a local ARC chapter and have been in the field for 4 years now), in addition to the internet's convenient access to the DSM-IV.

Currently, is diagnosed (by the school) as having LD and nothing else. His teachers are routinely violating his IEP. We moved him to a new school district this year, as his last school was also blatently violating the IEP and changing his services regularly without notifying us or requesting approval. Now, this new school is already an issue, too! This isn't the main problem we're having, however.

Currently the issue is that we need to get a diagnosis for , with the hopes that we can get him some SSI or Medicaid or something to help pay for services that we could provide to him. Also, we hope that with a more accurate diagnosis we can get more appropriate help from the special-ed department.

There are several programs I've found to help him with emotion/facial expression recognition, social skills, short term memory strengthening, and reading/writing issues that I hope to be able to purchase with this money. I realize I'm optimistic (and if we're denied that's a whole other ball game!), but anyway... I called the local Neurodevelopment Center in Providence, which seems to have several really great programs and actually *know* what they're doing. They informed me that the school needs to make a referral for testing so that the district can pick up the tab of whatever our insurance won't cover. They said that it shouldn't be a big problem, as they have been getting referrals from his particular elementary school for quite some time. They warned me to go through the school because one woman was fighting with her insurance company for four years before they paid, and that only happened because she finally threatened to call all the local newspapers and investigative reporters on TV.

So we went to 's first IEP review meeting recently and were told flat-out (by his new principal) that not only have they never made any referrals for testing, but that it was outside their realm of authority. They said we were welcome to get the testing done privately but that they would have nothing to do with it because it was not their gig.

So we called the Neuro. Ctr back and told them what happened, and asked if we could set up an appointment for testing. They informed us that the principal was absolutely lying and that if we wanted to set up testing we would have to pay $2600 up front and keep our fingers crossed for reimbursement from our insurance company. We simply don't have this money, and are at a loss! Both 's father and I are in our twenties and just don't have high-enough paying jobs to cover all of this- we're happy if we can pay our bills and keep food on the table!

My boyfriend did leave a message for the head of the district special ed department this afternoon, but that's as far as we've been able to get. We plan to bring up things like FAPE and that his teacher admitted to suspecting Autism since she first met , and she even agreed that he should get tested. (PS she is really great and was advocating for us at the meeting- calling people out when they dodged our questions, etc. It's a shame she's new to the school district and doesn't know too much about this sort of administrative stuff!) I just hope that at least *some* of what we have to say makes some sort of difference! What if they tell us the same thing as the principal did? Are we stuck without a diagnosis?

What else can we do? This little boy simply cannot handle all of these problems. With the proper interventions, his father and I both know what a wonderful life he could lead; he's the most compassionate and loving individual I've ever met, but his dyslexia on top of undiagnosed HFA in a mainstream classroom with very little extra help is simply NOT working. All they are ensuring is that by the time he's 16 and can legally drop out of school, he WILL. We do all that we can to help him out (I schedule every moment of our day from the time he gets off the bus at 3:15 until he goes to bed at 9 alternating between homework and 10-15 minutes of physical play, and at least 30 mins of relaxation before he gets into bed).

The fact that nobody in that school can realize that they play an integral part of someone's *childhood* is beyond me. Very few things are more important and deserving of special attention than that.

Sorry for the rant; I don't know of any people who can better understand all of this crap! It just makes me so mad.... -- MargisonDon't Breed, Don't Buy, Adopt!

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