Intro post, difficulties with schools

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I'm the mother of a very bright child with Asperger's. 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.

just wanted to say hi, you should maybe check in the Parents Forum. Good Luck

reika: Thank you, I'm browsing the parents forums now. Would it be considered "spamming" to repost this in the parenting forums?

I totally relate to what you're writing about your son. I have a couple of questions though --

1. How old is your son? I don't think (?) you mentioned his age or grade in your post.

2. What state are you located in?

3. Does your son have a diagnosis?

When I was going through the early stages of problems with schools, I went to a parent support group, and got a LOT of helpful information from other parents there. Can your autism alliance group connect you with support groups? Maybe you can find one by searching online. This was the most valuable thing we had while going through a horrible time with our school district.

Your son may have a diagnosis -- I don't know -- but if he doesn't, then it makes it hard to get an IEP. The IEP is the power position that you need to be able to get what your son needs at school. You should be able to get two things with the IEP -- help for any academic AND SOCIAL needs that he is having AND support for his gifted needs as well.

Also, through the autism alliance, there's the possibility that they can direct you towards some social skills classes in your area. This can help your son IMMENSELY.

Keep us updated on what happens. Looking through the parent's forum is a great idea.

Kris

Welcome. The school systems can be difficult; just because your son is smart doesn't mean he dosen't qualify for services. He may not need an IEP but you could look into a 504 plan. If you can get a copy of the book The OASIS Guide To Asperger Syndrome from a libray it may help as it has a whole section on school services and such. If you want to check them out the OASIS website is www.aspergersyndrome.org. Hope all goes well with your son.

militarybrat: We have a 504, but obviously it is not working, as nothing is being done for him/us. Thanks for those links - I'll definitely check them out.

Your welcome for the links. If they aren't following the terms you set in the 504 or continue to refuse to help your son you could always threaten legal action; sometimes the suggestion is enough for the problems to suddenly fix themselves. You might be able to check for Cognitive Behavioral Therapy as well incase the B-Mod list is too long. There are lots of options out there. I hope everything works out for your son.

Welcome to WP,

Third Graders are fun! The parents are very helpful.

Nothing works as well as stepping back taking a few deep breaths, and saying, I am going to get help here, it will get better. I would swear you did not breath at all on that post. A little keyed up?

It is not the end of the world, that would be simple, it is something you have to stay in good shape for.

By Fourth Grade they mellow out a bit. You are doing the best, lots of new things that work, the parents know. Just the best support group on the planet.

Hello

I have triplets in 4th grade 2 are boys and 1 girl the 2 boys in the last two years were diagnosed abs . One son though at age 2 was dianosed with sensory integration they missed the autsim at the childrens hospital. Birth to three blew us off and I have been fighting with the school system. If you have a dianoses in writing from a specialist then you need to contact the special education department of your school and request in writing and by phone for a meeting to put an IEP in place for your son because if you have it in writing your school is supposed to give you the services. But I also found out a week ago my school system was supposed to tell me about the alternative schools in the area for my sons but never did the school has to recommend them to the special programs and the school system has to foot the bill.Thats prob. why they wont tell you about them and thats what happend to me the schools like you should be doing this better at home with your kids I have 3 in fourth grade school is tough for both my boys.

I found out to the state should and you can look into it a parent advocate to help you get things for your son and you can also check into lawyers in your area that may handel special education issues you may have tobring one in.

Check into your childrens hospitals too they may have a advocate that can point you in the right direction. I live in Connecticut and its like pulling teeth but I want to look into alternative programs also and Ihave been researching.

Good luck stay in touch I know your frustrations and Maybe Ican help you with the info that I know. good luck happy holidayd

Welcome to WP!

Tim

I can't offer advice on the situation with your son, but I do look forward to "talking" to you here on WP.