completely overwhelmed and better

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Registered: 10-03-2004
completely overwhelmed and better
9
Wed, 07-26-2006 - 6:20am

OK, dust has settled and Malcolm is home. He's doing great, talking about what happened, happy to be puttering about at home for now. We still talk about him maybe going in a few days during next week and a half -- man, dh and I need a little space to get SO MUCH DONE!!!! ... and he says he will maybe but he doesn't really want to go, because ... He's afraid he will lose his temper again and noone will be able to help him!! how perceptive is that kid, huh? I emailed the assistant principal that, also asked for incident report to go to doctor appt. to look at bruise... I don't want to send him back to school, really. We may just muddle along.

And muddle is the operative phrase. Of course noone is returning calls at BOE. And now I must carve out time to start calling all these schools and day treatment programs (to prove good faith), sending over reports and evals and IEP -- actually, BOE has MISPLACED IEP and never sent us or new school any copy and I've been calling them for months now . This is going to be fun NOT.

The scariest part to me is that I don't want to make another mistake here. What will we do with our super-bright, gifted, funny, very verbal, easily confused, perceptive little boy? ASD school is too slow academically and socially but comfortable. Academic school too demanding socially and not supportive enough but good academically (although even here he was way ahead of the other kids...)

I will look for another school and maybe that will be a good thing, but in my mommy gut I feel there isn't a school for him. Even at this school, however, there were weeks he was positively thriving. School has been so instrumental in his progress, I think we do need a new school for him. How can I get a appropriate school created for him?? He needs one that doesn't exist!

At least he's not hating all schools right now. He's relieved that we need to find another school that is more right for him. He says (yes, another pithy Malcolm quote) "I just couldn't figure out how to get along there!"

He slays me.

Sara
ilovemalcolm

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Registered: 03-26-2003
Wed, 07-26-2006 - 9:23am

How far is that ASPIE school from you guys? I know it is in NY somewhere. Is it in the city or close by? Is it just for middle and high school?

I have read the same thing over and over out here and other places. There just is no good placement for kids who are a bit more academically able and autistic. I guess the assumption is that they should be mainstreamed but they can't be.

I was even reading about a school about an hour or 2 north of here. A dad was upset because the school advertises itself as being a school for HFA/AS type kids but in actuallity it is not because it doesn't have enough of the higher academic type kids so they group all the autistic children together.

Your into theatre. We have loads of theatre out here. Why don't you move to California and we will start a school.

BTW, there is actually a program in my DH's district that is for kids like this (so he tells me). I have considered trying to get the kids in there based on the fact that he works in district but it would be over an hour commute each way for them and that would be worse than their current placement. I have heard of some similar programs in other districts as well, just not in ours or in our SELPA (group of local 14 districts).

Renee

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Registered: 03-26-2003
Wed, 07-26-2006 - 9:49am

Sara.....your son is sooooo perceptive.......afraid he will lose his temper and there is noone there to help him.....I feel for him.......that is the exact issue we are worried about for Vaughn's new school......he has been at the elementary school for 3 years - they know him there and we have a "safe" person and place he can go to when there is trouble. That is one of the main goals for starting 3rd grade is to establish a safe person and place in the new school.

You definitely have your work cut out for you.....sending all the P&PTs I can muster.......hang in there.

(((HUGS)))
Christie

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Registered: 09-12-2004
Wed, 07-26-2006 - 2:30pm

Sara, I just read what was going on. Bless his heart. What about homeschooling/ASD school combo? Can you find a tutor to help him stay challenged academically while he's going to the ASD school? I can imagine that this is overwhelming.

Kelly

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Registered: 10-03-2004
Wed, 07-26-2006 - 3:44pm

Dear kelly,

great idea except the other reason we took him out of ASD school is that he is ALSO socially advanced way ahead of most of the kids there, he was the peers. We feel that school had outlived its usefulness for him on all fronts and we don't need institutional babysitting just to lkeep him in school. We need HIM to have peers and practise with more verbal, social children, maybe NOT quite as impulsive as were at this last school, quieter....

Don't know yet what we will do, guys, but thank you for all the support.

Sara

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Registered: 03-26-2003
Wed, 07-26-2006 - 4:06pm

(((SARA)))

wow, I so feel for Malcolm! what a wonderful kid in such an imperfect world! I'm sure you'll figure something out. I'm glad things are feeling a little better. Gear up for your fight (w/ the BOE), a good fight to think about always makes me feel better and at least I have something to do.

Betsy

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Registered: 04-07-2003
Thu, 07-27-2006 - 1:15pm

Hi Sara.. It is rina from Long Island.
Forgive me, I understand that the NYC school system is much different than the Long Island districts and how it functions. But have you checked out your local schools to see if they have an inclusion class? Maybe place him in one of those type of classrooms at the public school maybe even with an aide? I also kow it may not be possible with the NYC system

We finally have a diagnosis dfor Josh of
Asperger's and Josh will finally be placed in an inclusion classroom. If that does not work well for josh this year in 6th grade i may have to go through the BOCES programs to see what fits. Like Mal.. Josh is a bright kid and but he just gets by. His grades are average. But he has a
hard time though witl the Social aspects of things. But with Josh he will just shut down or walk away if things get to dificult rather than throw a temper tanturm(at least in school) At home Josh just getas loud when he is getting mad.
It was my surprise though today after dropping off Josh's evaul to the district that there are services that our district provides for Autistic kids and their familes. Such as Parent teaching, and a few other things I am blanking on. I will keep you posted..lol But maybe it might be necessary for you to force the districts hand to allow him to go "OUT-OF _district" to get the services that another school system might be more able to provide.

Good Luck
Rina

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Registered: 10-03-2004
Thu, 07-27-2006 - 4:08pm

Hi Rina,

and thanks for writing. Malcolm's sensory issues are way too high at this point for him to be in a classroom of 25 or more kids, aide or no aide. We would be interested in a very small inclusion class. But much smaller than anyone operates, so no go. We have always had him in special needs private schools, so finding an inclusion program of any kind would be too much for him as they are now structured.

We have to investigate many options, none of which are really great, but also it is the end of summer so HOW we will do this is in question.

Thanks again,

Sara
ilovemalcolm

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Registered: 04-07-2003
Thu, 07-27-2006 - 6:41pm

No Problem Sara.

As I said I know Long Island versus NYC tends to be different so I don't know how they handle the special ed kids within their boundaries.

But as a suggestion and I don't know if this is ever going to be an option esp with real estate being as expensisive as it is. Have you ever thought about moving out of the city. I realize now for Josh if we ever moved off the Island to any other state. Now not only will I have to find 1) find a synagauge that is either Conservative or reform, we are Jewish..lol. 2) Find an orthopedic doctor who knows about clubfoot and how to treat it (yes Josh has that too). Now we are going to have to make sure the school system will be able to handle his needs.
Meaning either an Inclusion class, teachers willing to folow an IEP, and even provide him with an aide if the inclusion classes are not availble.
I just went to my Library and got a few books on Asperger's so I am starting to reasrch it myself. The one I am reading is called "Hitchhiking through Asperger's Syndrome" by Lise Pyles. So far very intersting It is from a mom whose son has Asperger's. He is now probably about 21 now. But she was dealing with Asperger's before it had a name.

So many Aha moments for me.
Rina

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Registered: 10-03-2004
Thu, 07-27-2006 - 8:28pm

Dear Rina,

Well we probably could move to almost anywhere because our NYC apt. we bought a number of years ago is now worth a fortune! One of ds' best, best friends is moving to Westchester to an area that is supposed to have stunning special ed in the public schools and dh thought moving there would be a great idea. But it is problematic because of me. I love living in the City. My whole business is here and it is quite lucrative. My entire support network of very close friends is here and I think I would wither and choke living in a small town or suburb. I've always hated living in them before and have deliberately chosen not to most of my adult life. I'm a City gal.

I guess if things REALLY don't work out here, I will reconsider this, but we have not yet even begun to fight and I don't want to give up before I start. Besides, I just might want to kick a little NYC BOE before this is all over, could happen...

That's right, you are just finding out Josh's dx. We've not known the spectrum part of ds' challenges the whole time, but then Malcolm's dx is sorta yes, sorta no PDD-NOS. He isn't even listed as autism with BOE, although we could get that changed if we needed to for placement. The problem with finding out about school systems and if they are able meet the needs of our kids is that what they say and what they do are often light years apart. By law, they are ALL supposed to meet our kids' needs. Everyone is supposed to do whatever is necessary by IDEA in order for them to learn and participate and grow. But that is hardly the reality. Sadly.

yours,
Sara