Please tell me I'm not crazy......

iVillage Member
Registered: 11-28-2006
Please tell me I'm not crazy......
11
Mon, 05-21-2007 - 1:11pm

We had a terrible terrible IEP last thurs. Just for a re-cap, I took Chris to a doctor, paid 2800 dollars out of my pocket to find his Dysgraphia, and also to look for Asperger's.

Results came back as falling into the 70's for Written expression and also very low Visual Processing. The doc thought Bi-Polar, but I don't agree, I feel his rages are due to the AS. He also said he had a thought disorder and had major problems holding onto a conversation.

The doctor agree'd that he did have "Traits" of Aspergers, but didn't quite fit the spectrum. (I know that I really messed that one up as I truley didn't understand the questions that were asked on the Gilliam Autism Scale. Plus as time has gone on, I recognize more of his behaviors that would answer those questions better. Pulling out some childhood videos has helped also as I saw he didn't respond to my voice calling out for him and another video to were you see my friend walk up to him, put her hands out to pick him up and he didn't respond by putting his hands up. She had to it 3 times before he finally responded in a hesitant way. He was 10 months old at the time).

So anyway, I take the doc's report to the school and they do their own testing. Well of course everything they did showed he's fine!!! Everything averaged out, including OT and Speech.

They don't see the Autism either. The only things the teacher put as strange behavior was staring at his hands. She also puts in the report that he does strange things. She was asked this at the meeting and she mentioned how he rolls his eye's up in the back of his head (He has done this since he was two, and I had an eeg done to rule out seizure's, which so far nothing showed. I now tend to think its a tic, because you can tell its not something thats done on purpose, it just happens. She also said when he talks to you he gets his face real close to yours (which is something I have noticed too when he's with other kids). She also said (which isn't in the report) that he stairs off into space instead of doing work. Well she calls it daydreaming, I call it checking out and in his own world. And I told them "I do not put my child on a Anti-Pyscotic for nothing!!!!"

(Which btw has been a god send, I haven't seen a rage in 2-3 weeks from him.)

I know why they don't see Chris's Autism, I explained that he holds it together in school, has a very rigid personality and is very rule orientated. There's no way he's going to let it all out. He saves it up and brings it home and explodes with it. Believe me I have 5 pages of examples of Autistic traits that I see him display.

So far we did not sign his IEP, only that we all met. I'm waiting for a phone call back from a parent advocacy group to get some help.

Anyway, have you ever had this problem? That the school just doesn't see it? I almost feel like I'm crazy, and maybe I'm in a terrible dream and maybe I should just give up.

Lainie

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iVillage Member
Registered: 03-27-2003
Mon, 05-21-2007 - 1:55pm

Definitely keep fighting. At the very first CSE meeting I had with Haley's school last year (before her diagnosis of AS), the school said she is at the high end of the academic scale. She can do the work... she just doesn't do it. They refused any special ed assistance based on that. Yet it was very clear that she could not handle the workload or the mainstream classroom situation because every single day, she would pick and bite at herself until she had blood all over her. She would snap pencils, fidget, growl at the teacher... The faculty would make comments to me like, "We have never seen such extreme behavior in a child." and the school psychologist wanted me to take her to the ER and lie that she was a danger to herself and others just so they could push for psychological testing. Yet since she showed she was intelligent, she didn't qualify for their services. **insert rolling eyes here**

Getting a child psychiatrist appt in upstate NY is a very difficult thing but we finally got in with someone and got the diagnosis. Now, this year, she has a full range of special ed services and things are 100% better.

I hope things can get straightened out soon for you and your son.



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Mom to Erin (19) and Haley (10yo Asp
iVillage Member
Registered: 04-07-2003
Mon, 05-21-2007 - 3:18pm

My ds exhibits very few symptoms at school, but fortunately we have a teacher who notices his struggles (we'd told her from the outset that he was probably on spectrum, so she was probably more attuned to it). However, until he had a recognized diagnosis and IEP (504 actually), she couldn't do anything for him officially. I'm sure it helps that ds doesn't have behavior problems at school 'cus I've seen a difference between how my ds is treated and another AS child in that classroom.

I'm sure what helped us was the very thorough eval we had done at Children's Hospital. The school accepted it completely even tho' they see very few of the symptoms at school.

If our dx had not been as thorough as it was, I'm sure we'd be in your shoes right now. If we'd had to pay for out-of-pocket testing, we'd definitely be where you are now 'cus there's no way we could have paid out-of-pocket testing. I'd be really ticked if I'd paid that much money and received so little help.

iVillage Member
Registered: 01-29-2004
Mon, 05-21-2007 - 3:32pm

Our case was ditto---ditto to what tearose70 explained. Keep pushing for eval. until you find the right diagnosis that you think will fit your child. Brighter children are pushed to the way side and are not given any accomodations, just thought of as bad parenting. I had the same situation with my son and we finally got the diagnosis, the school behaviorist was sorry that she thought it was bad parenting skill. Now life is so much better and the cut slack for his diability when it comes to anger management.

hugs and take care,
Anandhi

iVillage Member
Registered: 11-28-2006
Mon, 05-21-2007 - 3:52pm

Actually, I picked up the report and read it again (the one from the doctor) and I have to say it was very thorough.

Even tho he didn't get a dx of AS the way the doctor describes Chris's Emotional disturbance problems, his thinking problems, his thought process, how he couldn't quite get chris to respond at times to the emotional tests, and his social skill problems, it really does describe alot of autistic behaviors. He also said he has a very rigid thought process. And he noted his problems with transitions, change and troubles with his conversations.

I think its time to go to the regional center, but I'm so tired of doctors and schools not listening to me. I'm almost fearful to try this again, but I guess I have too. Gotta fight for my guy.

iVillage Member
Registered: 11-28-2006
Mon, 05-21-2007 - 3:58pm

Wow your kidding, they actually told you it was bad parenting skills??? Holy cow! Well they haven't used those type of words, but they circle around them and treat it like it is.

Especially the teacher. In the IEP, tony mentioned that he had to go(this was at the end) because he's a coach for a baseball team and he has all of the equipment. The teacher chirped "You mean Chris's baseball team?" He didn't think about it and said yes. I think that was her way of saying GEE He isn't in school, but you allow him to play baseball.

Well what tony didn't think to say was that our son quite the team because it was making his life miserable (his words). I think he plans to bring that one up at the next IEP meeting. It sure supports us as he can't handle these types of things.

iVillage Member
Registered: 03-21-2007
Mon, 05-21-2007 - 4:37pm
hi,know what you're going through.keep fighting for your son.It took me 4 years to get a diagnosis for my son but once you have it the help is there for you.my son was diagnosed with mild pdd-nos,shows no signs of it anywhere apart from school,so thats why it took so long.Can i ask what your son is on to help with the rages,you say he's not had one for a few weeks.I've seen my doctor for help with my sons rages but no help was given.keep fighting the feeling of it all being a nightmare does all come to end,hopefully sooner than later.
iVillage Member
Registered: 11-28-2006
Mon, 05-21-2007 - 6:20pm

Thank you for the encouragement guys. I guess I needed an extra dose to remind me why I have to go thru and finish this. But man, that meeting made me feel like I was looseing it.

Yvonne, he started on Risperadal and he is so much better now. If he perserveres on something it doesn't turn into a full fledge attack if he can't have it right this min. He still will get stuck, like sat night he started on having to make a chair out of wood right then and there. (It was 11:15 at night!!! lol) He wanted us to gather up some wood peices and some nails and stuff so he could start. It was pretty strong but we were able to talk him down. He brought it up again today, but I can see a difference on the intensity. His OCD shot up, but we started him on prozac for that.

You should make an appt with a good Child Pysciatrist (sp?) and see what they can do for you. :)

Lainie

iVillage Member
Registered: 06-02-2004
Mon, 05-21-2007 - 7:14pm

You're not crazy. Quite the opposite! You're a loving mom who is trying her very best to find the right dx for her child. I know how frustrating it is to keep hitting a brick wall everytime you think you're close to the appropriate dx. Please don't give up.

Hugs,
Amy~mom to Natalie & Lily

Avatar for maresgood
iVillage Member
Registered: 03-27-2003
Mon, 05-21-2007 - 8:47pm
You are not crazy. I feel for you. I went through all of this. Paying psychologists out of pocket to try & get a diagnosis so the schools would give her an IEP. After a miserable 4th & 5th gr. we finally got a diagnosis. I thought I was crazy too. I'm a nurse & I knew my dd's behavior was really out of norm. It was thought she initially had ADD inattentive way back in kindergarten! There are so many AS kids diagnosed these days that the districts are overwhelmed. It costs alot to educate special ed kids & they try to prevent you from getting services. It sucks that we as parents have to fight for these services. I have known parents that spent $$$ to hire an advocate because they were frustrated. Take Care & good luck with your son!~ Mary Ann
iVillage Member
Registered: 04-28-2007
Mon, 05-21-2007 - 9:44pm

Nope, not crazy at all! In MD the school was in lala land, even when Liam dropped fom the 92nd to the 70th percentile in reading and math; as for behaviors they just acted like it was all on us...sheesh! Once in GA though, they totally picked up the ball and ran with it.....dx within weeks. It really does just depend on the school district. we were lucky, but if we'd stayed in MD I really think I'd be fighting the same battle you are...figh fight fight gf!

Dee

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