I don't know what to do......

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Registered: 03-27-2003
I don't know what to do......
7
Tue, 03-28-2006 - 1:25pm

I had to pick Sam (6.75, AS mainstream classroom, IEP) up from school early today because he was throwing rocks outside at recess. I think that he was just throwing them near the edge of the play area into the woods, but when he was told to stop and come inside he ran away. Noone could get him to come in and they had to get his teacher to help. They did get him to come in before she got there though. Sigh.....he also told me that he ate a slug and that everyone else was eating them at recess too. Did I mention that recess is only 10 min.

His teacher said that this has been a hard week. I think it has something to do with us moving from the 3rd floor apt of our bldg to the 1st floor (same bldg.) He's very excited. She says that he is constantly poking people and that he put his hands around a girls throat and then knocked two people over all at the same time. He seems to have no clue or care how disruptive he is being. He has no impulse control at all either lately, at home too. His poor little brother is constantly being knocked over or tripped when they play and Sam can't seem to stop. I just can't let them play anymore. His teacher also said he will do good work when she sits next to him, but that's it. She can't sit next to him all the time. There's 24 kids in his class.

They've already told me that they don't do 1:1 for kids like Sam and that there isn't an aide in the school to put in his class or at recess for him. I can get him into a smaller class with an aide for next year, but recess will still be an issue. I don't think there are any HFA/AS classes in the city, only lower functioning ASD classrooms (one across the hall actually.) There are a couple of private ASD schools around, both at least 45 min. away, but we can't afford to send him or the lawyer to get the school to foot the bill. I don't even think there are any people on the school dept's staff that has any idea what to do with Sam. Homeschooling would most likely be a disaster; we'd both go completely crazy, but it's the only option that seems doable. He'd hate it and end up hating me; we'd probably end up hating each other.

We have a meeting this Fri. to go over the FBA they were supposd to be doing. His teacher has already said that they probably won't listen if it's just her that says he needs a smaller setting that I'll probably have to put up a fight, which I was planning on doing anyway. The principle said, " so, mom, I'm not sure about the future, what do you think will happen next year, about his placement?" I think they're hoping I'll just homeschool him. A boy that I thought has AS was in his teacher's class last year, He was dx AS over the summer and had started the year at the school; I had been wondering where he went and it turns out that he's being homeschooled now.

We live in a poor urban city, but this school is in a higher income area with fewer percentage of free lunch so is losing some of it's funding. His teacher said that the inclusion classroom may not be there next year.

I just don't know what to do; I feel like I've been put in a box. I want the best for him, but I don't know how to get it.

Chrystee

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Registered: 10-03-2004
Tue, 03-28-2006 - 4:13pm

Dear Chrystee,

Well, I know enough to know that they are breaking IDEA law to simply say outright that they don't provide 1:1 aide for "kids like Sam". They can't have a policy like that by law, this HAS to be determined on a case-by-case basis. You say you can't afford lawyers, how about getting an advocate? Many have sliding scales. Have you run all this by IEP board here at iVillage and Steph? Those gals are experts on how to put up a fight.

The school is not making much of an effort to set up for Sam to have a Free and Appropriate Public Education with how little they are accomodating his disabilities. I think I'd walk into Friday meeting with some facts, IDEA law in hand and a stronger handle on your rights by law. I know it is sometimes hard to GET your rights, but this school is actually breaking the law right now. Not meeting his needs and hoping he will go away is definitely not O.K.

I have to say that we have never had Malcolm mainstreamed because we feel that his needs would not be met in that setup, especially as his sensory needs are high. He COULD be successful in a smaller (12-15) room inclusion setting with supports, but in this money-mad world that just doesn't exist... As it is, he is in private school for mixed super-bright special needs kids and flourishing.

BTW, your son might not end up hating homeschool. As the social pressure would be relieved and he would understand what will be expected of him, it will be NOTHING like going to a big class with a teacher who has to sit by you to help you stay calm, KWIM?

Have you contacted that ASD school? Talked with their admissions office about how people get the school districts to pay? THey may be able to help you out with ideas and contacts. I think I might not decide in advance that you can't make that work, as it really could be a fabulous solution...

Good luck. Stay in touch. When our children's needs are being met instead of the needs of the school district's financial spread sheets, they CAN succeed!

yours,

Sara
ilovemalcolm

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Tue, 03-28-2006 - 4:58pm

Well the 2 private schools I speak of are also out of state. We live in MA, closer to RI than anything available in MA and the schools are over the border in RI.......I'm not sure how to tackle that at all or if it's even an option. Anthing in MA would be a 2 hour commute each way most likely which is out of the question entirely.

About homeschooling......Sam likes school. He does well in music, art and gym. He just hates most of the work and has no idea how his behavior affects other people. When we do reading or school work at home he isn't any different. He has trouble starting and completing work......he hates the work and I don't think that part would be any different at home, I'd just be fighting with him to do it all day. He doesn't like to read anything and contends that he can't read, even though I know he can if he remembers. He has hit me in the face, thrown pencils at me, knocked the glasses off of my face during work sessions. I think there's some other LD going on and I think once we figure that out, it will clear some of it up.

He's having a hard time the past week or so, so I'm sounding pretty down about him. When he's together he does great and is a joy to be around. But the past few days, he seems to go out of his way to get into trouble and has been more impulsive than usual, very angry and aggressive which isn't a good mix.

Chrystee

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Tue, 03-28-2006 - 5:37pm

Where in MA? I used to live in Blackstone (Near Woonsocket).

In RI is he Groden Center. Is that one you are talking about? There are TONS of resources in MA actually, you just need to know how and where to access them. MA is one of the leaders in autism stuff. Some of the districts are really good.

They changed the state law a bit which is a bummer because it used to be totally pro-parent.

Also, in MA they used to have the ability to switch districts to a different one if yours didn't have an appropriate placement. I know at one time I was looking at having Cait go to .....Holliston, I think it was, but then we moved to California.

I haven't lived there in 6 years but let me pick my brain a bit.

The main point is that they have to provide him an appropriate education and if they can't in district then they have to pay for one. I know a couple good non-public agencies around there that could provide support to the school and home stuff if neccessary.
Oh I gotta do some thinking. I lost contact with most of my contacts out there but I should be able to think of some contacts for you.

Renee

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Tue, 03-28-2006 - 7:03pm

We're in Fall River, SE MA.....poor, poor, poor area very close to RI. I'm 2 hours + from Boston and I don't know of any resources between here and there. Woonsocket is a 2 hour drive from here too. The closest school districts are quite rural, but North Dartmouth may not be too bad. New Bedford is probably out, more urban and poorer than Fall River.

Yes The Groden Center is one in RI and the Bradley School is the other.

I have been getting advice from Community Autism Resources and will probably give them call after the Fri. apt just so I have more of an update.

Any sort of lead in the right direction would be incredibly helpful! I'd love to have someone have a chat with the special needs supervisor to get these people some training. There are at least 2 schools in the city with lower functioning ASD classes and at least 3 kids that I know of going to Sam's school with AS and lots others that I suspect are somewhere on the high end of spectrum. Someone should know how to deal with these kids for Pete's sake!

Thanks!

Chrystee

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Tue, 03-28-2006 - 8:01pm

Hi Chrystee,
I'm in MA too. We live in Ayer which is north of Boston. What is happening to you is very similar to what happened to us. After a disasterous attempt at preschool & my repeated pleadings for a sped teacher they finally relented and put Billy in with a sped teacher. She was an angel. I had to attend school with Billy every single day for two years. Finally got an advocate and she went to bat for us. What I eventually had to do was threaten to sue the school. I didn't have the money for this, but they didn't know that. Once I mentioned an attorney it did get better. The school's attitude changed dramatically once I hired our advocate. She knew the things to fight for, stuff I didn't even know was available. Good luck.

Jen

 

Jen

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Registered: 03-26-2003
Tue, 03-28-2006 - 10:26pm

I know exactly where Fall River is. In fact I worked with a boy in EI there about 6 years ago but I don't remember the names of any of the people in that EI center. It was only for a few months but I know what you mean about a poor town.

Actually it only took me about an hour to get home from there so it wasn't too bad. GOsh I wish I was good with names. I worked also in south bay area and some of those districts may not be too far. I used to go from them to my client in Fall River and it only took 1/2 hour I think. This is remembering back a LONG time ago.

Some ideas are to contact programs like BEACON, Inc or the May Center. I used to work for BEACON and we did a variety of services for kids with ASD up to about age 8. They may have different policies now but there were some really good people there when I was there. We did home ABA, school support, consulting, etc. It is by nature ABA but they had a very open eclectic view though they specialized in ABA. The May Center is similar. They have thier residential program but they also have a variety of services as well offered. I think they where originally closer to your area so they may be more accessable. BEACON is out of Milford but they do cover the entire eastern half of MA. The New England Center for Children is wildly known for thier work with kids with autism. I worked there and honest, they wouldn't be my first choice then but I think they have come a long way. They are highly respected. They are farther away but again I don't know if they have consultants or folks that can come into your home or school.

I have heard the groden center is quite good. Or it was at anyrate. I wish I knew more about that but all I know is hearsay and old. Cait's preschool aide, who was also the mom of one of my highschool friends had worked there a number of years ago. It also had a pretty good reputation.

DO NOT contact BRI (behavior research institute) or what ever name it is using currently. It was in the Providence area. Never, not ever, no way. The director was Matt Israel and run away fast. The fact that that place even exists is an extreme embarrassment to anyone anywhere who work with autistic people.

Have you contacted the Aspergers Association of New England? I have heard they are pretty active. http://aane.autistics.org/ I see they even have grants for families of AS kids to help access therapy. They may be able to help you.

I was also trying to look up some parents I used to work with there that were involved in the ASA but can't seem to find them.

Hope some of that helps.

Renee

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Wed, 03-29-2006 - 11:17am

Thanks loads....I'm printing your post out!

Chrystee

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