New...Lost about, well...everything (Long)

[Guest guest]

Hi, My name is . I am married to Mike and we have two boys. is

12 and is 10.

I guess I will go back to the beginning and then this will all make more

sense. When was in 1st grade (7) his teacher noticed that he would

be crawling all over the floor and not being able to concentrate on his

school work.

We took him to a neurologist and he was diagnosed Tourette's and ADHD.

From the age of 7 till he was 10 we had tried every ADHD medication out

there and it only made his " tics " worse and never really helped.

Then we took him to see a new therapist. She said that he was

Asperger's. It made a lot of sense as to his behavior's and the

movements he is making...it is like he can contort his arms in the

oddest ways. More like he is triple jointed.

I understand that his brain is wired differently. I understand that he

only wants to focus on certain things. (Computer is one of those

things.) He has been on an IEP since 3rd grade. This year he started in

a new school (We live in Ashtabula and they closed his old school.) When

we went in to renew his IEP a few weeks ago they seemed to understand

that he does not do well in social situations and sometimes he needs

sensory breaks. They have it written down that he has special testing

protocols. They have a special education room and he says that he

doesn't go there. They tried to give him a test and didn't send him out

of the room, till he just sat there and didn't do it. He doesn't respect

people's personal boundaries. He sits at a desk by himself in his

classroom, he says he doesn't know if it helps or not. He says He

doesn't know about a lot of things or why he does or doesn't do things.

The school is constantly writing in his planner that he is not doing

anything productive in school.

He is getting re evaluated next week with a new P-Doc and two days after

that we are re evaluating his IEP. The school nurse called yesterday and

asked if he was taking his medications (He takes Zoloft and Clonidine.

She says it seems like as parents we are doing everything we possibly

can. He goes to therapy. Of course he not seeing an Asperger/Autism

specialist. And since we live in Ashtabula, I would think that the

nearest place for that would either be Lake County or Cuyahoga County.

He gets Ohio Medicaid (The white card) It is just a matter of finding

someone to take him to. I know the Cleveland Clinic has an Autism

Center. Yes, we would be willing to drive him out there so he gets the

help he needs.

Yesterday after we heard that 3 days in a row now that he has been

unproductive in school we told him he couldn't play on his computer. You

would have thought we took away his connection to life. He cried and

cried for hours. He said he hates his life and he doesn't know WHY he

doesn't do his work at school. I hate seeing him like that, but as a Mom

who doesn't have Asperger's I don't know how to relate to him.

We used to live in Wyoming and they had a student advocate for when he

had IEP meetings, but everyone seems to want to change him and I don't

know how possible that is. He has to " conform " 80% of the time. Sigh.

Anyways, is there some type of student advocate in Ashtabula County?

I am so glad I found this group for my area. There has to be people who

understand and can guide us somehow.

Thanks for listening