Difficulties obtaining services/accommodations

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I'm the mother of a very bright Aspie third-grader. My husband and I both share AS traits, but have never been formally diagnosed. Our son seems just like us, only times ten.

We've had an extremely difficult time parenting our son well. He is sweet but oblivious, changes his mind on a dime, doesn't understand when people are upset with him (even if they yell at him or tell him to go away), is extremely sensitive and very socially unsophisticated. He has no friends, except one down the street who likes his game system (and that kid's mother needs someone to watch him once in awhile, so she asks me). He never gets invited to birthday parties.

Every single teacher he's ever had has looked like Lyndon Johnson before and after his presidency and Viet Nam. They start out pretty good, but by the time parent-teacher conferences roll around, they look haggard and wan and 10 years older and desperate for answers - just like us! lol! The schools have been the single biggest stressor for our family. They never offer services, just complain about his behaviors and repeatedly ask us what they should do, what we're doing about it, etc. He talks CONSTANTLY in class, interrupts, is unable to modulate his voice (so it sounds like he's always yelling, even when he's not), gets fixated on his interest du jour and won't stop talking about it, hangs onto other kids and hugs them and paws at them even when they tell him to go away, seems oblivious to anyone's discomfort...*sigh*

But because his grades are good, and he was reading 188 wpm in 2nd grade (literally the highest score in the entire grade level - they retested him because the test-giver didn't believe the results, and got the same score), the school says he'll "never" qualify for services, because they can't prove his condition is "adversely affecting his ability to learn." But his teachers say he is affecting the other kids' ability to learn, because he's SO disruptive, and it makes his teachers unable to do their jobs, too.

Interestingly, although the school says his grades prove he's too smart for "services," every year they tell us he doesn't qualify for gifted programs/resources, either. Even though every year, his teachers push an application into our hands and insist we have him tested again for the gifted program. So either way, we fall into a crack where they won't/don't have to help us.

We got a 504 against my FIL's advice. I thought it would "get the ball rolling" at the school, and lead to some type of accommodations. But it hasn't. His teachers are still at their wits' end, wanting us to start punishing him at home for behaviors at school (totally ineffectual and more stress-inducing), and there was recently a meeting about him that we weren't advised of or present for. My FIL says the 504 just means the school gets more money, but they don't want to spend it on resources for him (even though that's what the money is for). I don't know if he's right or wrong - he's the same person who advised us not to inform the boy's new teachers about his condition, but let them "just find out for themselves." We felt that was very bad (though well-intentioned) advice, and didn't go that route. Our son is not the kind of kid you just spring on an unsuspecting care-giver.

Someone at the local autism alliance (which NO ONE I'd ever spoken to had pointed me towards) told me to present my request that he be tested in writing. I did, and my god my phone was ringing that afternoon - the principal called me. She said it was "great" that I'd put my request in writing, but I really felt she meant the opposite of what she was saying to me. Last year when I met with the school's counselor, and I asked him if there were any other schools that might be a better fit for our son (smaller classes, more AS assistance), he just gave me a lecture about how their funding was tied to enrollment numbers, and they don't like to see kids leave the district because they get less money. WTF??! I was furious, but kept it to myself, silently just thanking the man for showing me who he is (i.e., someone I will know better than to deal with in the future).

We have no other children, and no family to help us. What family we do have is not understanding of our situation, and think it's something we're doing wrong or not doing, and that our son is just "willful" or "high-strung" or spoiled (again, our fault). Since he's been born, they've never once offered to take him for a weekend so we could get some time to ourselves. It's been so stressful on our marriage, we're now in counseling. When I tell them this, they just say, "Oh, wow, yeah, that must be really tough. Let us know how you work that out." And I want to scream when they say I always look tired or seem tense. YA THINK?! At Thanksgiving, one well-meaning but clueless relative suggested we find "a good military school" to send him to. *headdesk*

I'm really hoping to connect with some people here who understand our challenges and the stress we face every day. We think our son will be a great adult, if we can only help him survive childhood. All of this has been a thousand times more stressful on us than it has been on him, and I feel like I've been screaming into the wind for help since he was just a toddler, mostly to no avail. I'm really hoping that the autism alliance in town can help us deal with the school district and at least reach a point where the teachers aren't constantly complaining about his AS behaviors. They don't call the blind student's parents every week complaining he still can't see, do they?

And it's very difficult sometimes to tell the difference between what he can't control, and when he's just being a typical bright, manipulative kid. He'll argue with a brick wall. He's obsessed with rules - except where they apply to him. He talks nonstop, but if you ask him something specific, half the time he won't be able to answer you. When he gets really wound up, he talks in this high-pitched screechy voice that makes all living things flee in terror and ear pain, making nonsensical sounds and repeating the same syllables or made-up words over and over.

It's just been so unbelievably hard, and I didn't have great self-esteem to start with, and we're so isolated here. I've been frustrated that the "therapists" we've seen were more than willing to give him medication, but never pointed us toward local resources or helped us navigate the schools, or gotten him into behavioral therapy. And it seems like if we CAN find someone who specializes in AS, they're either not seeing new patients or don't take insurance, or they do but our insurance won't cover AS services.

We have to keep telling ourselves he can't help a lot of this. But we just feel angry and frustrated and sad All The Time. Then we feel like failures as parents.

I'm hoping people here will understand some of what I've described. Thanks so much for reading, and listening.

You seem like a very interesting person. Too bad that you don't live next door! It's hard to be an aspy mom. I sure felt awkward around the parents and teacher but the kids thought that I was fun whenever I had to be as school for some event.

My son was miserable in school. We gave up with the school and were the worst home schoolers in the world, except.... my son was very curious about a lot of things. Feeling very guilty about not teaching him, whenever he asked questions, we went overboard explaining things to him. So when we finally put him back into school he was too old to graduate. However, they gave him a test and decided that his father and I were great home schoolers because he tested so high. He didn't stagnate when he wasn't in school.

Since he wasn't going to graduate, the school didn't care what classes he took. He spent his time in school learning to be comfortable around other kids and not worrying about grades. He was ahead of most of the other kids in the classes but didn't do the homework so if his grades mattered, they wouldn't have been good. However, he always aced all the tests in school.

We talked about his delicate temperament and asked him to do what he needed to do to protect himself. He thinks about his reactions, as do we and then we try to fine tune ways for him to handle his reactions. He gets more objective and introspective about himself all the time. He has a sense of humor about himself, too.

He's doing well at the community college. He's turned into a really nice person and his path is easier for us and him. So hang in there. We never got usuable advice from the school about him ever.

OregonBecky: Thank you for your kind response. We've considered home-schooling. Maybe we will eventually reconsider it - although there is a possibility we may be moving to a better school district/state in a few months. (We HOPE!) Until then, I have to learn to be much more comfortable with confrontation (ack!) then I am, and "advocate" for our son with the district we have.

We really do think he'll gradually become better able to socialize (or at least not annoy everyone he meets), but for now, that seems a long way off. I know we need to somehow "soften" our approach with him. It's that happy medium thing.

Thanks again for your optimistic and supportive words.

But because his grades are good, and he was reading 188 wpm in 2nd grade (literally the highest score in the entire grade level - they retested him because the test-giver didn't believe the results, and got the same score), the school says he'll "never" qualify for services, because they can't prove his condition is "adversely affecting his ability to learn." But his teachers say he is affecting the other kids' ability to learn, because he's SO disruptive, and it makes his teachers unable to do their jobs, too.

Interestingly, although the school says his grades prove he's too smart for "services," every year they tell us he doesn't qualify for gifted programs/resources, either. Even though every year, his teachers push an application into our hands and insist we have him tested again for the gifted program. So either way, we fall into a crack where they won't/don't have to help us.

Your quote above... sorry don't know how to do a quote on these boards...

But did you know what your school told you above was HOGWASH!! !

You need to go start reading Wrightslaw.com and also Autismlaw.com. They are sights that give legal info on Autism and Learning disability and the law.

Your school is not telling you the law when it comes to IEP'S Why should they? Because they think we are stupid idiots and won't push them to do what they need to do according to the law.

Have you had him tested in all areas? Besides academics (and you can be gifted and have a LD at the same time) as in OT, Speech, Sensory ect? All of those could qualify for your son for an IEP.

Children can qualify even if they have wonderful grades.

Please please I hope that you will check out those sites, or go on Ivilliage and check out the special education plans board and ask what you can do for your child.

You won't regret it. And remember you are the only one that can fight for your child.

Good luck.
Lainie

Be careful with the home schooling of your aspie! Its really amazing how fast they will advance beyond you. My younger brother is 11 now and was diagnosed about 3 years ago. He was homeschooled for 2 of those years for mutliple reasons.
My parents moved - there wasn't a Catholic school- he hated the public school- it was too far behind the Catholic school- he was bored out of his mind-
Well, it only took 2 years before my mom had to put him back in school b/c he was moving so quickly throught the homeschooling program(Through Seaton Hall) that he was scheduled to graduate at 15.

School was his obsession at the time. Wouldn't every parent love for that to be a problem. Now its video games. How quickly life can return to some simblance of normalcy.

I would strongly recommend discussing the matter with a special education attorney. I have a son with Asperger syndrome and I've found that the severe behavioral problems that characterize most school administrators can be improved greatly by the presence of a lawyer representing the parents.

My experience is that most school districts will basically do every unethical thing imaginable to avoid having to provide any more services than they absolutely have to. Don't let them intimidate you -- discuss your child's case with a special education lawyer. School districts will try to BS you in every way imaginable. A lawyer can help you fight through it and get what you need for your child.

my daughter's 504 ONLY addresses Social Learning~not academics, because at this point in time her grades are not the issue......Her social skills are greatly lacking, though.

I am in the same boat--academically tested, my 3.5 year old is advanced, but ask him what he had for lunch today and see the blank stare you will get. He can count to to a hundred, tell you what colors mix to make chartreuse, and draw a pentagon, but he can't have a conversation with another kid....I am having a heck of a time convinving the preschool that this is a problem since he never causes any *trouble* for them.

Kate