Comments on: Education and Autism Advocacy

By: Kristina Chew, PhD

Kristina Chew, PhD — Tue, 25 Mar 2008 21:05:10 +0000

@Carla,

I know even how you feel about moving your son—–we recently toured the middle school where Charlie will be for the next 2-3 years. He has been in the same school with some of the same aides, same SLP, OT, and APE teacher, for 2 years, and also with the same set of kids (with one who is new and happens to be—like Charlie and one other child in the room—-Asian; this seems to appeal to Charlie). The teachers are carefully managing a transition for the whole classroom and I hope some aides might continue—–as Charlie has gotten older, he is much more aware of the teachers and environment, physical space, etc. around him and therefore change has to be managed carefully.

Sighing over the thought of what a new principal might do on hearing your son say “shoot them”…..

It sounds like your son is making great progress where he is—-can you provide paperwork, progress reports etc. to show how much this relies on his current placement?

We’ve lived in a number of school districts in New Jersey, but we don’t have the rules about having to live in one “zone” or other—-Charlie’s placement has been determined by his needs, not by where in the town we live.

Again, it is possible to get your son evaluated by an outside evaluator, perhaps a neuropsychiatrist? That person needs to come and see your son in the current program and then see the program the district wants him go to. Then, the neuro. needs to write a report saying that the move would be detrimental and the current program is the most appropriate and the proposed placement is not.

Just to ask again: have you seen this new proposed placement? The district is required by law to let you see it.

Keep insisting that the current placement is appropriate and that you can document this.

By: Carla Wilking

Carla Wilking — Mon, 24 Mar 2008 11:19:52 +0000

The problem I have is that currently he is working at or above grade level, which wasn’t evident until about November or December. To start him in a new place, we’d have to re-train his emotional and social skills first then move on to academics. Whereas if he stayed, he can keep moving forward with academics. He is familiar now with both the K autistic and K regular ed teachers as he sees them every day.
I did have an incident of recently going to his OT appointment which was a new time and day, and he walked in and the waiting area was crowded (the rehab has ot, pt & speech). He saw another lady who has been a fill in because they are short an OT person. BUt my son saw her and not his regular OT, and he crammed himself into a corner of the room. I never see him do that. But I think he though he would have to see the substitute. But when he saw his own OT (who he adores) come out he felt better to get out of the corner.
We also know that because of the influence of his older brothers who like starwars that when my son gets near strangers, it rubs him the wrong way, and recently he’d wave his arms around as if he’s shooting or zapping or light-sabering. We’re working speedily on stopping him on those occasions where he blurt out “shoot them”. I can just imagine that being said in the new school and he get sent to the principals office maybe handcuffed away!
I am in the process of trying to de-clutter to be prepared to put our house on the market. THey say if I produce a listing with the intent to move to our school’s area, they’ll let him stay (a year is given to sell).

By: Kristina Chew, PhD

Kristina Chew, PhD — Sun, 23 Mar 2008 23:38:03 +0000

@Carla,

The teacher’s combining of structure and flexibility sounds ideal. Could get an outside consultant to observe how your son does in the one setting and then to observe what the other is like? Do you have documentation from previous placements (that were, perhaps, more “rigid”) where he did not do as well?

I definitely know how you feel about regression from everything being different—am thinking that using documents with measurable gains on goals might be especially important in building a case for your son staying where he is. (Maybe the school district might try to say that it would be good for him to have a change so he doesn’t get so dependent on one teacher and classroom——just brainstorming here.)

By: Carla Wilking

Carla Wilking — Sun, 23 Mar 2008 16:01:31 +0000

I spoke with the teacher of the class in my zone. There is an autism class for K-2, and an autism class for 3-5. So they are lumped together for one. Let me tell you about his current class set up first. His teacher is TEACCH trained. Her class, however, is not totally modeled after TEACCH. She believes that our world is not structured, so she teaches them in structure, but also teaches them how to cope without structure. Yes her room is colorful with distractions (but she knows how to keep them focussed!). Her class is most beneficial for higher functioning autism, but I call her a miracle worker for what she accomplishes in lower functioning kids. She has a frog swing in her classroom (my sons favorite and helpful for his SI needs). They go on field trips that are so good for them (Going to a nursing home and singing for the old folks and handing out valentine care packages with decorated tissue boxes), or going to a beauty school and letting the kids get a “make-over”. Her discipline works. (three squares pulled, then time-out). There’s magic in that I tell you!!! She made me some for home, and wow!
The teacher in my zone is more strictly TEACCH, little toys, white walls, etc.
There is a business club in our county and they host 3 events in the year, one of them a Christmas dinner (fancy-but with hotdogs & burgers) held for the special ed children in the county. Well, our family sat at a table besides the table with kids from “my zone”. There were a couple very disruptive, low-functioning. I was told that those kids were actually in my son’s class for prek, and when they left, they were nothing like that!
My main reason for not wanting him there though is because of the regression that is bound to happen for being in a place where EVERYTHING is different: building, people, students, schedules.
Thank you for any help you can give. There’s a TV news station that we’re thinking of giving a call to since the newspapers don’t like reporting negative things about the school system. THe news station isn’t in our county.
Blessings,

By: Kristina Chew, PhD

Kristina Chew, PhD — Sun, 23 Mar 2008 05:49:33 +0000

@Carla,

I love that you wrote “his world is about learning”—this is just what I feel for my son. And what the chairman of the special division said—barely quotable!

What kind of class would they send him to in “your” zone? Can you observe it or have an outside evaluator observe it and his current placement, and report on the two placements—-and on why one is appropriate, while the other is lacking? (Assuming that it is.) I will be in touch soon about specific laws etc. Completely agree about advocacy—it is good and just the right thing to do! Very best wishes—-

By: Carla Wilking

Carla Wilking — Sun, 23 Mar 2008 04:51:15 +0000

Wow, Kristina, I am so glad I found people on here that have this thinking. I thought I was a nutcase. When my now 5 yos got placed in an AU pre-k which was part of an elementary school, I fell in love with the teacher when she said something in passing, “well this is the way they were made”. My child started the class seeming somewhat low functioning, but after two years of the class, he is now proving to be high-functioning. But now I am dealing with my school system. The elementary school we’re in isn’t in my zone or ‘assigned’ school, so next year they are saying my son needs to be sent to the school in my zone. My son always vocalized to some extent at home, but for all of last year my son spoke in a whisper at school. Well, September of this year he finally became comfortable enough to speak out and now his language is expanding DAILY! He’s socially blossoming (He gets integrated with typical pre-k kids located on the other side of a huge room with a divider many parts of his day). He’s academically zooming ahead. His teacher has been taking him to a regular ed K class that is structured similar to his and he was in his element…love learning new things. BUT NOW…they want to put this child in a place where he is sure to regress. Do you know what the chairman of the special ed division of our school system said??? “It will be hard, but they’ll get over it!!!!!” He loves his current school. He gets excited when he sees the administrators, his teachers, even his peers. Can anyone help give me suggestions and arguments or maybe legislation to keep him at his school? I applied for a transfer request, but I won’t know anything for a few weeks.
I LOVE what everyone here is saying. My child has made a ‘miracle’ change and I didn’t do anything to his diet, I didn’t give enzymes. He is RARELY going into his world because right now, his world is about learning. I and another parent each spoke for 3 minutes during public comment at a recent board meeting, urging the board to consider their policy and what the administration is doing. It was amuzing to see the flycatching they were doing with their mouths hanging open, speechless. In our town we think there’s a buddy system with the local papers too, because there were reporters there, but no ‘negative’ story was mentioned. Sorry this is long.

Feel free to email me anything. I’m new here, and new to advocacy, but you know what? It feels good!

By: Phil Schwarz

Phil Schwarz — Wed, 25 Apr 2007 01:13:02 +0000

Maybe, just maybe, if there were more adults on the spectrum in the governance of our major autism organizations, the great minds that gathered to draft and push through the Combating Autism Act would have thought of a less militaristic and disenfranchising title for the legislation.

Adults on the spectrum — their perspective and experience, their needs, their widely varying modalities of communication — are too valuable a resource for the “autism community” of parents, professionals, and clinicians to squander by continuing to alienate them. A title like “Combating Autism Act” does not help, even if the intentions are good. Remember that road to Hell.

By: Autism Vox » Wishful Thinking: Searching for the Magic Bullet for Autism

Autism Vox » Wishful Thinking: Searching for the Magic Bullet for Autism — Tue, 24 Apr 2007 06:19:21 +0000

[...] [Despite its title, this post is really a plug for education.] [...]

By: julie

julie — Mon, 23 Apr 2007 19:02:54 +0000

Absolutely, the schools and goverment are the institutions changing the subject to some extent. I live in New York State and there still is no protocal for children who fall on the spectrum but are diagnosed specifically with Aspberger or non verbal autistic. My daughter as well is high functioning and has been verbal since she was 1. That does not mean that she does not need services. I am fortunate because I worked with children who had disabilities in Michigan before I was married and also worked as an employment specialist for disabeled adults. I know that Rebekah will get the education that she needs because I know how to advocate for her. I find that a lot of parents do not have these skills and the schools are not passing out guidlines for them to follow. I am in the process of becoming certified as an advocate in New York. Maybe if parents were empowered to get the help they need for their children from the schools they would not be in such a ruch to try to “fix” them.

By: Moi ;)

Moi ;) — Mon, 23 Apr 2007 17:06:47 +0000

ITA, Julie. Partly those who do abandon the subject of education to that of cause are those who have children who are either not in school yet, or in elementary school. They are living in the now and not yet seeing the bigger picture, which is pretty normal.

So, just to play devil’s advocate….I am going to throw this out there.

Your child will ALWAYS have educational needs resulting from the autism. It will not matter what caused it, how much “curing” you can get done, how much language they attain.

My son is very high functioning and has been verbal since he was 5-6. He’s one of those on the edge, where he could succeed, or society could fail him. I never see him as failing, himself – because it’s not his responsibility to see that he gets the education he needs. That’s Ours – mine, the school’s and the gov’t. The education is his ticket to living on his own – or not.

It’s those last two – school and gov’t – that hold us back. Who do you think is changing the subject?