Still a Long Way to Go With IDEA
Published July 02, 2009 @ 12:36AM PT

Back in April, I put up an action to Tell President Obama to Fully Fund IDEA. So far (as of writing this post) there are 1195 signatures. I had set the original goal at 500. The petition ends this Saturday, July 4th, so, please, one more push!
As the parent of a child with disabilities, I'm thankful every day for the Individuals with Disabilities Education Act. i really cannot imagine what Charlie's and our lives would be like without it.
That said, school is a struggle for my son, like many students with disabilities. It is not that he does not like learning or is unwilling to learn, or, even, that he doesn't like school. Since the time he was 2 and a quarter years old and started in a home ABA program, Charlie has liked learning. He aims to please; he used to hover at the front window to watch for the therapists when they walked or drove up, and greet them with a big smile. (He didn't talk in those days.) And he likes to go to school, wants to be among other children his age; likes to be busy and doing things.
But public school holds many challenges for Charlie and some that aren't always immediately taken into consideration.
There's some 1400 students at his middle school and (as far as I can tell; once upon a time I was a PTA co-president, but those days are long gone) the school is carefully, tightly run, with a big emphasis on academics and order. Apparently---Charlie's teacher has been asking---there is no room in the students' schedules to do some reverse inclusion with Charlie's class and the other special ed classroom at school; at his elementary school, students came in regularly during lunch and recess. Charlie is not mainstreamed in any subjects (his academics are far "behind" that of the students his age) and he and his classmates pretty much stay in one room all day, except for gym class first thing in the morning.
Many accommodations and supports are in place for Charlie and things look good on paper: His class has a 1:1 student to teacher ratio; his programs are individualized to his learning; he has picture schedules and much else made specifically for him. Public school is a challenging environment (and for students without "anything").
This won't be news to any parents out there: Schools can provide the staff supports and teaching methodology for students with disabilities. But there's only so much that can be done with the physical environment and the design of school buildings; about what it's like to be in a building with 1400 students not to mention teachers, staff, and administrators, all of whom have their share of needs and concerns and jobs and aren't thinking about a few students with some extra-big challenges.
Charlie's middle school seems to be the one school in the district that has yet to have extensive renovations to let go of its beige, brown, and stucco 70s-architecture-ness. The high school has a new auditorium, classroom, et cetera; the middle school has neither a track nor basketball courts; the students run around the circle in front of the school as a "track." There are some fields with grass and soccer goals but, well, you get the picture. Charlie's classroom is located in whatever room was assigned to his teacher; its windows look out onto a hallway. There is a courtyard visible through windows, but it's not what I'd call a sensory-friendly place, with the fluorescent lights (I know Charlie is highly aware of their hum; when we're in grocery and other stores with those lights, he puts his head down and his fingers over his ears). For awhile, there was a room next door that Charlie's teacher could use, but it's not always available (and not during the week of testing).
Gym in the morning is great, but Charlie has a lot of energy. Unlike the other students, he doesn't switch rooms between classes. Often he goes on walks throughout the day, outside or in the halls. But these aren't options when it rains (as it did almost every day for much of June), or when quiet is needed (as when the students had standardized testing during June). (I only figured out about the testing and how that changed Charlie's routine after the fact.) Add to this the fact that bells are constantly ringing and messages being relayed over the loudspeaker and you've got a lot of factors that need more than a 1:1 student-to-teacher ratio and ABA to address.
How can we keep making out schools more accessible? Create more accommodations? Factor in sensory sensitivities? I've only noted some concerns about the physical environment and classroom design, but what about accommodations to make some interactions between students with disabilities and "other" students possible? Somehow I don't think the best way to teach about diversity and acceptance of the differences of others is to keep students in effect segregated, in their classrooms or because of the demands of their academic curriculum---learning isn't only about being able to do advanced math, analyze literature, writes sentences in Spanish and French. There's a push in New Jersey to have more in-district programs for students on the spectrum. Such programs are more economical but for such programs to work, we need to keep in mind the full spectrum of accommodations needed.
The fact that Charlie has been attending public school since he was 4 years old has been no small feat. We've come a long with IDEA. The presence of Charlie and his classmates in the schools makes that very clear! But there is still such a long long way to go, and we have to keep reminding school districts that it takes everyone to make IDEA work, and just having the right things in place on paper is just the beginning.
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Comments (9)
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What about coordinating Charlie's class with one regular education course. That way when that class goes for art, music or their turn at lunch and recess then Charlie/Charlie's class can go along.(If not a class then one class on a team or however they coordinate schedules) In middle school none is on an individual schedule like in high school. That is what they did for my older one when he was in a sef-contained class. It may have been elementary but the concept is applicable here.They went by the schedule of one particular class and that's when my son was able to join in. It is not that they have to fit him into the schedule with the entire grade. I could see how that may cause issues.
Posted by Elise Butowsky on 07/02/2009 @ 05:00AM PT
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There's been a big concern about "behaviors" (some of Charlie's in the past year have involved swiping things off of tables). His teacher had a lot of hesitance about having him and his class in the cafeteria with the noise. But we have not pushed (partially because of things like the swiping) -- think it is time to open the conversation on these things again, thank you!
Sigh, no more recess in middle school.
Posted by Kristina Chew on 07/02/2009 @ 07:02AM PT
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Can he have a 1-1 in those circumstances where he may have behaviors. New situations are tough and he may adjust just fine if given the chance. No more recess, that's just ridiculous when you think about the pent up energy of adolescence.
Posted by Elise Butowsky on 07/02/2009 @ 07:19AM PT
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Sigh, no more recess in middle school.
I know that's been the case for awhile, but shockingly enough, we had recess back in the Jurassic when I was in middle school...and it was a good thing because it was a chance to burn off the excess energy and have some "downtime" outside of the classroom environment. I always shake my head when I hear the talk about eliminating recess for elementary school children (!), which besides removing one more potential inclusion opportunity seems to fail to recognize that all children are still...children.
Posted by Regina Claypool-Frey on 07/02/2009 @ 09:37AM PT
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I think all the kids miss it---whenever I've stopped by the middle school, it's not an upbeat place (the emphasis seems to be to turn the kids into upstanding high school students in a college prep kind of way). Charlie is also on the young side---he just turned 12 in May, so he was 11 for most of his first year there.
Good times these past days between school and ESY---_lots_ of bike rides with Jim; nothing like it for using up all that energy.
Posted by Kristina Chew on 07/02/2009 @ 09:44AM PT
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We always struggle with "the inclusion question". How much is enough, when is it beneficial, when is it better to have a separate venue, etc.
But we have always felt that everyone can be included for at least part of the day, and that it is beneficial for everyone ("normal" or not) to be in situations in school where they are exposed to everyone else.
How can we expect inclusive employment and housing opportunities in society later, if we can't even get a little bit of inclusion now?
Joe
Posted by Joe Sark on 07/02/2009 @ 07:26AM PT
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Is there any part of regular gym he could do? Maybe not the team sports, or at least in thinking of some of the kids I work with, team sports times wouldn't be it. However, and I went to middle school in the district where the kids I am thinking of will go to, we always did a few laps jogging around the gym. I know they also have, at least now, mountain bikes at the middle school, and they do that for a few weeks of gym. They also have weight training and cardio equipment that we used for a block. Once you get to high school here, typical students have a choice of three categories of gym classes, I believe they were team sports, lifetime activities, and something I don't remember, maybe individual sports. Not so much in the team sports, but particularly in the other categories, I see a good number of opportunities to include kids with disabilities. We had weight training, tennis, table tennis, and actually, I think one of the classes was just walking/running. No reason why kids with disabilities couldn't learn and participate in these activities, and also have these skills for the rest of their lives as well. I may just have to mention again that there is no reason why the boy I work with couldn't go in to stretch and run a few laps with everyone else. He might just get more from it than going to a morning meeting where they talk about things he hasn't been involved in.
Posted by Jen Rosenblum on 07/02/2009 @ 08:20AM PT
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Middle school should be about year in the future for us. I say should because there's some question about my son's academic level. I think he could be on track with his age, but he spent two years in a school exclusively for autistic students focused almost totally on "behaviors" and so he lost a lot of ground academically. I'm not sure that his behaviors really improved with a lot of focus, ABA etc, but that's a different topic.
We have found a way to make inclusion successful for him at the elementary level. He has a one on one aide and has very minimal pull out services (compared to what is typical for someone with his level of disability). The school he is in emphasizes differentiated instruction for all students and so his differentiation might be a little more extreme, but it's not shocking to the teachers. There's been lots of training in the school, both for students and staff and it was given by teachers who had worked with my son at the autism specific school, so it was very targeted to dealing with him not some general concept of autistic kids. It's a small school (~130 students) and everybody knows him and most seem to go out of their way to interact with him and engage him. I know he's grown a lot over this year and so have the other students and staff at the school.
I have a hard time seeing this happen in a giant middle school. Maybe smaller schools are a possible solution. I know that the charter schools in Baltimore that have been successful are usually small. I think the community helps with behavior problems for all students, not just autistic ones. Of course the down side of small successful schools is that there are many students applying for each slot, and since it's lottery based you can not count on being able to go to a specific school. It's a shame, because if we can't find a situation that works we will have to look into a non-public placement. I say this is a shame because I really think inclusion is the best setting for my son and I know the school system will spend a lot of money if he goes to a private special ed school. I'm hoping we will be able to find something when the time comes.
Posted by Cornelia Rivers on 07/02/2009 @ 11:32AM PT
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I will reiterate my belief that is is no accident that the self-advocacy movement really began to take off right around the time the first generation of kids educated under IDEA started to graduate. Before that, most people with developmental disabilities never got a real education, and so lacked the tools to forge any kind of a movement.
Posted by Mark Romoser on 07/02/2009 @ 02:09PM PT
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