Back on the Road to Find a School
Published July 15, 2009 @ 12:13AM PT
Jim and I met with our school district yesterday at an IEP meeting that the district had requested. The school district is of the opinion that Charlie needs to be educated in a placement other than in the public schools (he is currently in a self-contained autism classroom in our town's middle school). There are some private autism schools here in New Jersey that are possibilities (and I am actually visiting one this very morning), but these schools are very small and, when we mention them as placements that we would like to inquire about for Charlie, the response is usually statements such as:
"getting into X school is harder than getting into Harvard"
"Charlie will never get in because they only take 3 to 4 year olds and he is too old"
Not exactly encouraging.
To return to the IEP meeting (whose overall tone was on a similar note, as you may imagine). The private schools, including the one I am visiting and another I will visit tomorrow, have a one-to-one ratio of teachers/therapists to students, as is the case in Charlie's current program. Noting how difficult it is to get a spot at one of these schools, the district has mentioned some other placements, including a center that is quite large; earlier this year, they had also mentioned this residential placement. We have had many questions about these places concerning the training and supervision of the staff, the staff-to-child ratio, and the staff turnover rate. Suffice it to say that we have found answers to our questions, and that these answers have only served to make us raise our eyebrows more and to dig our heels in deep.
Prior to the meeting (which was originally scheduled in late June and cancelled and rescheduled by the district), I had requested to see Charlie's records under FERPA (the Family Educational Rights and Privacy Act). This review made it clear that evaluations (neuropsychological, speech/language, OT) had not been done for Charlie in more than three years. Under IDEA, students with disabilities are to be evaluated at least every three years, and such evaluations are necessary to determine placement. What, therefore, was the district basing a change in Charlie's placement on?
All this, combined with the district talking about other placements, adds up to a situation that is in-ter-est-ing, to say the least and more than familiar to Jim and me.
We have been on a search for a school for Charlie before, in 2005, when he was in a public school program in another town in New Jersey. We homeschooled Charlie for a brief period as his classroom was not appropriate, and then he was admitted at a small private autism school. He did well there, but the school closed in June of 2006 and, on finding that another town---the one where we now live---has an in-district autism program that had, on paper, what Charlie needed, we moved in with my in-laws (they had been residents of this town for over 30 years). We hoped---one always hopes---that this might be our final move, as there have been many in Charlie's young life: He was born in St. Louis, diagnosed with autism in St. Paul, and we moved back to Jim's native New Jersey in 2001 so Charlie could get the education he needed. Since being in our current town, Charlie has been in three different schools, with three different teachers, for the past three years.
And now it seems that we are on yet another stage of our odyssey to find a school, a place, for Charlie.
We are on a road already well-traveled. So now we are getting ready to go knocking on the doors of schools and asking about a place for Charlie, and knowing that the answer, as noted above, may very well be---will very well be---"We're sorry, no room here: Charlie is too old." It's not just that people think of autism as something only children have, and that people overlook the fact that autistic adults are adults, not "large children." Autistic children like my son who is all of 12 years old---not even a teenager---are too often written off as "too old" by the time they're, well, 3 or 4 years old.
It's very easy to become bitter, angry, enraged, and launch into full warrior mom mode (how dare they!!?!?!!!; etc.). But what this latest situation (roadblock) on the search for the best education for Charlie has been making us think mostly about is:
Never, ever give up. Never give up on a child, on any individual, regardless of diagnosis or age.
And:
What can communities do to fully embrace all of their members so that no one, no one, gets written off?
What can we do so that the message is not "he's out"?
What can we do differently to make things work for a student like Charlie?
What can we change about we're doing, about ourselves?
What is not being done in our schools and our communities that students are sent out---warehoused even---that a school district gives up on one its own?
Still such a long way to go with IDEA.
One thing for sure as we step back on the road again. While once Jim and I had to hold Charlie's hands tightly to help him keep pace with us, now he (he is a 12-year-old boy, puh-leez) shakes off our hands and clomps along beside us and, too, behind us.
And, too, ahead of us, leading our tight team of three over the rocks and very careful around the ditches, the puddles and the mud.
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Comments (23)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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End the Perpetuation of Pity
221 People
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End the Perpetuation of Pity
Kristina, I'm so sorry. I know you saw this coming, but I know it also feels like a punch in the gut. You're right when you note how many times you've walked this road with Charlie, and I know you will find the right place for him. But I'm sorry that this placement, that you worked so hard for, has said no. Your family will be in my thoughts today, and I'll look foward to your insightful thoughts about this search you're embarking upon. I wish it were otherwise, but I'm glad to know that what you experience here will help many others, because you will share it with us, bumps and all.
As I reminded my son recently during a small tough time when he was feeling bad, Ohana means family--nobody gets left behind.
Posted by Cate R on 07/15/2009 @ 04:28AM PT
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Good luck finding a new place...I hope that when you do, Charlie can be there for a while. I'll be thinking of you.
Posted by Jen Niebler on 07/15/2009 @ 04:31AM PT
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Are you allowed to look out of state. There are really good programs in NY, just over the bridge. Some in Rockland and some in Westchester.
Posted by Elise Butowsky on 07/15/2009 @ 04:49AM PT
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thank you for noting that---I do know that parents in NY have kids in some NJ private schools. thank you!
Posted by Kristina Chew on 07/15/2009 @ 11:59AM PT
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Best of luck finding a new placement. I don't think it's right that the school system should remove your child that easily from his classroom if there's no proof of need. Although, I am surprised that you didn't know what testing had been done b/c I have all reports and I am the first one to nag and get it done.
We have a process "Individual Placement Review Committee Report" (IPRC) that both school and parent can argue over placement, and also use that document to get the Province to pay for supplies - like my youngest's ball chair and my eldest's keywriter.
I have to admit I am slightly envious that there are autism private schools in the USA AND the State will pay for you to go there. I wish at times we had that option.
Being we don't have those options I am seriously considering homeschooling both in highschool. I'd do it tomorrow but the truth is, except for the extra in the summer/holidays/weekends none of us is ready for them to be out of school yet.... although considering the behaviour problems (not my kid, the "so called" NT ones) in their school... it may be sooner rather than later b/c I'm tired of it and more and more, so is the eldest.
Posted by Fw2 farmwifetwo on 07/15/2009 @ 05:14AM PT
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Kristina, if you think Charlie has been doing well in his school district, tough crap for them. They need to buck up and do their jobs. They are only saying this because it's going to cost them money - by setting precedent and helping in their facility, they will have to spend money on every kid that goes by. TOUGH. By sending him to private school, they get him out-of-sight, out-of-mind, and the other parents won't know so they will never get what their kids need, either. If you are looking for community embracement, that's DEFINITELY not the way.
This is not time to get philosophical. Don't say it's "easy" to become "Warrior Mom" - there's a REASON to be Warrior Mom, and now is a pretty darn good one. So what about the anger, etc.? That is short term.
Remind yourself that it's not just for Charlie's sake. It's for the sake of every other autistic kid that comes after him, who is there now, and who went through whatever they put them through before Charlie was ever there.
We have that responsibility. If someone had done that for our kids before, then we would not have the problems we do now. We would not have to fight, kids would get what they need. But they didn't, so we do.
You have them by the short hairs - if they have not done evals, of course they have nothing to base their "opinions" on, and it sucks to be them. Don't think they don't know it. Getting your son out of there gets them out of the responsibility because then you will have "condoned" their actions, in legal terminology.
Not to mention -- it also smells like a Middle States or state eval to me.... Made any phone calls to the NJ Department of Ed lately? I think one (and of course, mentioning the lack of evals) might get you the response you want.
A good lawyer could bust them but good. WHY should you have to find him an appropriate placement, and why can't they BE an appropriate placement?? For all our kids? School districts whine about every single kid that's not "ordinary" - well, IMO, it's time to pound some heads. They need to MAKE his placement appropriate.
Maybe if you learn to get some enjoyment out of making them impotent, that will help? ;D
In the meantime, be careful what you post. No need to give them any more ammo, just in case.
Posted by Moi Bloggg on 07/15/2009 @ 06:15AM PT
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Yes, I wrote and rewrote this post several times with the thought in mind that the district, lawyers, etc. might/will/are reading.
(There may be more than one reason I've said or not said various things here. Ahem.)
Thanks for the great suggestions---one reason I wrote this post was to hear what you and others, other parents who've been there done that, have to say.
Posted by Kristina Chew on 07/15/2009 @ 12:01PM PT
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Kristina:
My son is a student at the DLC in Warren. We live in Essex County. If this is the large center you are referring to I would be happy to share our experience there with you.
Posted by Kate Hall on 07/15/2009 @ 07:08AM PT
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I have to agree with Moi on this one. We want our kids as adults to find a society that welcomes them and makes accommodations for them. The people that will be their co-workers and live in their apartments and shop in stores with them etc. are the kids that now need to be in school with them. In a setting where they have contact and gain some understanding. It's definitely a 2 way street - the only way our kids will learn what behaviors are unacceptable to "normal" kids is by being around them and seeing appropriate behaviors modeled.
We did our stint in an autism specific school with lots of highly trained experts working with my son. Little to no development for him happened in that setting. In the one year where we've been in a full inclusion setting (with a para-professional aide) there has been all sorts of growth. And the kids in his school have learned a lot about autism and not judging people's intelligence based on communication skills.
If you can get the schools to look at the trade-offs it's really cheaper for them to train staff, adapt facilities and provide services in neighborhood schools rather than pouring all that money and more into a private, non-inclusive school. The next kid that comes along will take the same funding if they take that path. Once you've fixed a neighborhood school the recurring cost to deal with the next autistic kid that comes along is much lower.
The trick is figuring out a way to make them want to be inclusive, because forcing it down their throats can lead to bad feelings which in the end isn't good for your kid. If you get a lawyer, I'd advise looking for one that spends 90% of their time on diplomacy and 10% on quoting laws. You might need to take one step backwards to allow future steps forward. Because really, it's the long term big picture that we're shooting for here. A society that our kids can grow to adulthood in that has a welcoming place for them.
Looks like this organization http://njcie.net/ has a lot in common with www.mcie.org who's motto is "learning together to live together" That about sums it up.
Posted by Cornelia Rivers on 07/15/2009 @ 08:55AM PT
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I'm sorry to hear about the stuggle you are experiencing with placement. I can't believe that the school system has not re-evaluated him in 3 years. Before making any moves, you should demand the re-evaluation and have a private one done also in case you need it. Ugh...
It's also sad that people seem to have this idea that there's some type of window that closes at 3 or 4. My son has Aspergers and wasn't even diagnosed until 5 yrs 9 months. I can assure you, his learning and growth are ongoing. We all learn and grow throughout life (heck, I'm 38 and I'm still learning!) Why should people assume that those with ASDs suddenly stop at a certain (young) age?!
Posted by Beth Costa on 07/15/2009 @ 10:37AM PT
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I'm a school SLP & I want to know:Who all was at this meeting? Were his regular teachers & therapists there? It's kind of, actually , very, shocking to me that a district would recommend a private placement in the middle of the summer without a current evaluation in place, and call an IEP meeting without pre-IEP staffing that included you. It sounds like he's been in a highly restrictive environment & they want to send him to something more restrictive, and based on what? The whole thing sounds disorganized & manipulative.
Posted by Denise Szymczak on 07/15/2009 @ 11:02AM PT
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Charlie's teacher was there, also his case manager.
The administrator who was supposed to be there was late.
The special education director, who was not scheduled to be there, was present at the start.
Thank you----we do record all meetings too.
Posted by Kristina Chew on 07/15/2009 @ 12:03PM PT
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Well step one is easy (ha!), get the evaluations done. That should buy some time. I would also arrange private evals on my own dime. Between the district evals and your own evals you might have a three to six month window to explore more options. And have a better understanding as to what the next steps should be for Charlie.
Sounds like step 2 of exploring alternatives has been done and found wanting. So how about thinking outside of the box and starting your own alternative? (Yes, I know this sounds glib.)
But seriously? You have met a great many people online and in person around the world. You have a university setting and students. There has to be a way to tap into these resources. A charter middle/high school with hands on training for the university students? Tie it into a job training/coaching program? Copy some of the life skills programs that some universities are introducing for thier ASD students?
I know you have (we all have) thought about it because while early intervention and IEPs are all well and good, they have a finite time. And as Beth above mentioned (waves from another late dx'd aspie teen Mom), no one ever stops learning.
Oh and ps....the Southwest Autism Research & Resource Center has started up a program for teens now. It looks interesting - another program to model after?
Good luck to you guys and keep us updated (as if you wouldn't : )
Posted by Kate Apgar on 07/15/2009 @ 12:16PM PT
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I have thought of it (starting a school or some such ourselves)---it is certainly something to keep in mind among many others. I've been looking at SAARRC's program---very interesting---
There are alternatives that would be good for Charlie here in NJ. Problem is getting him a place in one (bringing me back to the "start one yourself" idea, which was indeed mentioned by the director of the school I saw today).
Posted by Kristina Chew on 07/15/2009 @ 02:18PM PT
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Not sure if a certain residential placement in PA, located near Sesame Place has ever come up, or if it ever will. I just know this particular place gets children, and adults from all over the country. However, I also know in certain programs at this place, there is a very high teacher turn over... about once a month.
Posted by Jen Rosenblum on 07/15/2009 @ 12:22PM PT
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I know what place you're talking about. No. Way. In Hades....
Posted by Moi Bloggg on 07/15/2009 @ 06:46PM PT
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That one has not come up but one in South Jersey has.
Posted by Kristina Chew on 07/15/2009 @ 06:55PM PT
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Kristina,
Have you thought of a Giant Steps model? We saw the original in Montreal several years ago, then they opened in Connecticut.
There are so many corners in this maze, while no one intends malice, the result is a plethora of opportunistic endeavors. There is money in autism, consequently programs pop up here and there.
Please, don't hesitate to run ideas by your readers, we have been there.
Posted by Robin Hausman Morris on 07/15/2009 @ 04:04PM PT
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My girlfriend's son attended the Giant Steps in Connecticut and thrived there.
Posted by Elise Butowsky on 07/15/2009 @ 04:11PM PT
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I wish you have the strength to be in this type of IEP's meetings. I have been in a few of these IEPs. But I know you and your husband will do the best for Charlie. I hope the district IEP team is doing the right thing for Charlie. The strength and courage of Charlie's IEP team is measured on how it deals with Charlie and all special education students with severe disabilities. Some teachers and administrators sometimes forget the reasons they want to become educators. We want to be teachers because we care for all children. "Kids don't care how much you know until they know how much you care." Charlie may have limited expressive language, but from your descriptions of him I know Charlie knows who really care for him. I have three questions for Charlie's IEP team. (1) Is their decision to out placement Charlie based on sound reasoning and support by solid data? (2) Will they do the same if Charlie is their son? (3) Do they care for Charlie?
If they answer no for one of these questions, then the school may not be the best environment for Charlie IMHO.
Posted by Hai Dang on 07/16/2009 @ 12:11AM PT
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I would be particularly curious about what their answers to (2) and (3) would be---certainly one is likely to hear it said that "they care for Charlie," but actions often speak louder than words.
Regarding (2), if they would do the same if Charlie were their son----the school district's behavioral consultant said that she would place her own son in the temporary residential placement she mentioned (Bancroft) if she had to.
Posted by Kristina Chew on 07/16/2009 @ 05:31AM PT
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Completely relating to your frustration as we are in the same situation with Kayla. We want her in a private placement and the school district is willing. But trying to get her in really does seem to be harder than getting into Harvard!
Posted by Ecki Stern on 07/16/2009 @ 05:13AM PT
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so does this mean that Charlie cannot attend 7th grade at the same school no matter what? Matthew is lower functioning that Charlie and he is in public school.
Will they be doing the assessments in Sep that havenot been done in three yrs?
Posted by Bonnie Sayers on 07/17/2009 @ 05:48PM PT
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