It is parent-teacher conference week at Charlie’s school and, as of Tuesday, his schoolday has been ending at 1pm, two hours earlier than usual. Having school for two hours less and being home two hours earlier is not a big deal, though this small change in the usual schedule of things has been known to send small tremors through our family. It is during the afternoon hours between 2 – 5 pm that Charlie’s voice and the set of his shoulders register tenseness, anxiety. My frend Ennis pointed out to me a while back that these regularly-occurring bouts of uneasiness are due to Circadian rhythms: ” we are most tired between 3-5AM, and during the day there is a lull around 3-5 PM,” he noted. I have been wondering: Is Charlie, being home at 1.30pm instead of 3.30pm, feeling that he has too much energy at a time when he is used to feeling otherwise? On Tuesday, he and I went for a walk, and Charlie’s voice was unsettled: The light in the sky, after all, was different, brighter, harsher.
Charlie and his classmates do not have a conference this week: His teacher makes regular home visit and we go into observe him in his classroom. It sometimes crosses my mind, why should Charlie and the other students in his class have to have their usual schedule disrupted for parent-teacher conferences that they are not having?
It occurs to me, were Charlie in a private autism school, he would not have such disruptions in his schedule, or if he did, they would be unique to his school. On the other hand, a little change to the usual routine is good for Charlie (for all of us): Charlie is a part of the community of his school, and follows its schedule, its rules, its routines, and I think that this is an ultimate benefit of his being in a public school placement. Many things have been tailored to suit his and his classmates’ individual needs and learning styles, but they are members of a large school community. Charlie is not mainstreamed but in a self-contained classroom. Through a new program, he has been assigned a peer “mentor” with whom he will be having his first “playdate” ever soon. In Charlie’s own school, students who are in the same grade levels as Charlie and his classmates come in to play during recess when the weather is bad; his teacher noted that two boys in particular have been riding scooters and playing games with Charlie.
These are very small interactions, nothing to broadcast about on national TV. And yet I sense they mean a great deal to Charlie: Because his classroom is in a public school in our town, he is drawn into the hustle and bustle, ebb and flow, of the school’s life. Charlie is in a “self-contained” classroom for autistic children and that word—self-contained—has an uncomfortable ring to it, as if to suggest that some “selves” need “containing.” Charlie is not “included” in the technical sense of the word; all of his learning happens in his classroom, one on one. But here in his public school classroom he is visible. Not everyone in the school district may be comfortable about discussing autism, but the other students are curious and, as reported, eager to volunteer to play and be peer models.
Reading Fighting Over When Public Should Pay Private Tuition for Disabled in the March 21st New York Times, I was reminded of these concerns over private vs. public schools placements for autistic children. Charlie was in a private autism school for a few months and I did like the exacting focus on his and the other children’s specific educational needs and the presence of full-time autism consultants. The New York Times article is specifically on the issue of whether or not school districts should “pay for private school for disabled children if the families refuse to try out public programs?” Is it not unfair for a child to be enrolled in a public program “just to prove the programs are weak” and inadequate? Who decides what is an “appropriate” educational placement for a child—-what if the school district and the parents have very different ideas about what an “appropriate” education for a disabled child is?
The question of whether or not there is an epidemic of autism came up again tonight on Larry King Live’s autism segment. When people hear that the prevalence rate for autism is 1 in 150, or 1 in 94, they rush to think that there is a real increase—an epidemic. I have posted more than my share of thoughts about the autism epidemic here. But I wonder if it would not be more useful—would be a more direct way of addressing the very real, every day needs of autistic students—-to focus more on another “e” word, on “education,” rather than “epidemic.” Because I do not think that saying there is an epidemic number of autistic children is the reason that we need more services, school placements, research, for them. We need the best education for autistic students because they need and deserve it.
I am speculating here, but I suspect that Charlie has not been entirely pleased to have shorter school days this week because he likes school. And that is always a newsworthy item to me.
Treat the whole school—that’s another way to look at it. In my son’s school, there are a few other special ed classrooms and definitely a number of kids at (so to speak) various points on the “spectrum” of sensory dysfunction. It is in a much nicer school building than Charlie was previously, plus his classroom used to be a music room and has some sound insulation.
I believe the e in education has gotten lost in the KNOw Child Left Behind. I think the increase in autism is an actuality. But I also believe the school systems as a whole are exagerating the symptoms. I have a 4 year old son who is autistic and recieves 1 on 1 training in school. The goal being to mainstream him. Mainstream him into WHAT I ASK. Our schools in general are doing so many things that contribute to these kids symptoms. 1. They have cut down or cut out PE. 2. They cut down ART and Music. I look at what my son is being taught, he gets movement everday, music, and art. He is taught to make eye contact and he is being taught to think and express himself. Why would I want him to be mainstreamed? I find it sad to see so many kids with autistic symptoms. I think these symptoms have always been around. But today they our schools are doing everything to exploit them. PE is huge in helping the Right sid of the Brain develope. By moving the body and joints we release endorphins to the brian that strengthen it. Tehy are taught team work and socialization skills and physical skills. PE could be so MUCH more benificial to all the children adn helping them focus, it is not just about helping the fat kid. They all need this movement for there overall developement. Right side of the brain therrapies through music are also helpful. They help focus and attention. We do these therapies with my son everyday. And then I watch my typical child sit in schoo all day, music class 1 half hour a week and pe 1 half hour a week and it seems she is having a hard time focusing, and is going stir crazy. These kids in typical classes are rushed around every 30 minutes and sitting down and infront of a computer, it is no wonder they are all developing add and adhd and ppds. What have we done to our schools and what are we thinking is important for them to learn. Go into a highschool and see if any of the kids make eye contact, shake your and and say hello. Without being prompted. Tehy do not do It. They are completely anti social unless iit is texted or e-mailed. Then learn what they have to know for the test so we can have good test scores- but god forbid they be well rounded and social. That has gone to the way side. Ican see it now. My son will be intoducing himself and shaking hands with kids becasue that is what he is taught, and he will look crazy. Why are we allowing our schools to be like this. why is it imiportant for our kids to prove they can read going into kindergarden. There is os much going wrong. I think in the old days, we had these symptoms, bnut becasue we had carpet on the floors, mozartin the hallways, and pe and music class we were able not to be so overwelmed. You walk into a tiled floor school, here the echo, listen to the kids talk, or i pods and cell phones, watch them run around from class to class and try and focus, while a teacher is teaching a class off a computer screen. It blows your mind- nobody can focus like that. Until I have to I will keep my son in the 1 on 1. and then maybe homeschool-There are so many kids now with IEPS, they need to look at the big picture and treat the whole school, so that can limit the symptoms, then they will have a better chance.
[...] the discussion was about education, and specifically about the issue of autistic students attending mainstream vs. private schools. Mr. Scott “commended” the work of the UK charity Treehouse, whose “aim is to [...]
Education—–and I’m an educator—-just isnt a word that catches people’s attention as much as something like “epidemic.” One reason, it seems to me, is that when one is talking about education, one is talking about something that takes time and can evolve and change over the course of a child’s life, whereas “epidemic” implies that some “magic pill,” some specific thing can be found and that will solve the problem quickly. So much has been happening in this past year as Charlie has gotten older, things that I would not have picture.
We ended up in the situation described in the NYTimes article regarding seeking a private placement for Charlie with our previous school district, and had to seek legal counsel, though we we did not, as things, turned out, have to require the lawyer’s presence in a school meeting. We do bring our ABA/autism consultant, to speak for Charlie’s needs. One reason I have been glad to have Charlie back “in-district” is due to the sort of capriousness of deciding who can attend and based on what criteria as you describe, Caroline.
Hi Lisa/Jedi,
I should have made clear that I was talking about New York City, and the Upper East Side in particular.
The public schools do their best, but cannot accomodate all the children with special needs. The state approved special education private schools have moved away from accepting children with ASD unless they can perform very well on standardized tests and have no ‘behaviors’.
That is, unless the children are from very rich and prominent families, then the rules are relaxed to accept these children.
It is astonishing to me personally that state approved schools can change the types of children they will accept. One director told me one year that the only types of children they would not accept were “children with autism with no language”. The next year it was ‘we do not take children with autism because they cannot learn’.
Even in the schools for ASD children, often the kids with ‘behaviors’ get ‘kicked out” because the staff do not know how to work with the children and do not care to even try, there are so many other children that can take their place.
I do hope that Autism Speaks will devote a large part of their awareness campaign to change this, ’society-wide’.
We are in NYS & one cannot generalise the availability of suport based on just the state- in our area it varies from school district to school district. At my son’s private school (it’s an alternative school that serves all kids, but is very IEP-friendly) we have spoken to parents from suburban school districts who’ve had to take lawyers to IEP meetings in order to get the services that are mandated by the state, whereas we have never felt the need to do this & have found our school district to be quite responsive to our son’s needs Our district is, incidentally, the district that has the highest number of children living in poverty in the area, so you can’t even generalise the level of support available using the relative socio-economic level of the families in the system.
The thing is, the person who decides what is “reasonable” in terms of supports & services is usually just that- one person. And it’s their interpretation of “reasonable” that can cause the inequalities in services from place to place. We were very fortunate when Brendan entered the special ed. system that the person who decided what was “reasonable” thought that busing him 3 days a week to another school for OT & PT was unreasonable, & so approved on-site services for him- the first child from our district to receive on-site services at that school. On another occasion, Brendan was tested by a speech therapist to see if he qualified for therapy, & because she had no training in autism, she felt he did not require speech support, even though all kids with Aspergers are guaranteed speech therapy in our area… However, when the speech therapist from the Autism Spectrum Disorders Team in out district interpreted the results of the testing, she made a very strong case for his needing pragmatic speech support & at present he’s getting daily speech therapy sessions! Quite a large difference from the original tester’s findings…
I think that these experiences argue that individual assessments by people who understand autism are the only way to really help individuals with autism & their families. As for there being a “culture of judgement & exclusion” in NY… I think we can make a case for such a culture to be society-wide.
Hi everyone,
I saw parts of Larry King and read the CNN transcript – there was a lot of emotions and opinions to digest, but I think the big positive message was these kids need love and understanding.
Gary Cole felt that the letters his wife wrote to the teachers and students about their daughter helped to create an atmosphere of acceptance for her.
(I was not allowed to do this at my child’s old school and a lot of parents and children have a lot of well-intentioned questions)
What the professor from Western wrote in Kathy’s entry is so important. I hear that it is difficult for children to ‘get services’ in Ontario, and that Canadian parents hear that New York is full of qualified, wonderful therapists. That actually is not the case.
Suzanne Wright knows the culture of judgement and exclusion for children with differences in New York especially and she can sound alarmist, but for the families she sees, it is an alarming and dire situation. Not the child or the label, but the lack of supports.
One could say that some are “perverating” on the one “e” word and not “education.” Thanks for sharing your brother’s comment, Kathy…….2 more short days for Charlie…….
Coincidentally Kristina, I just this minute received an email from my brother who also watched the Larry King autism segment.( My brother is Associate Professor in Diversity and Social Justice Education at U.W.O in London Canada)
He said, ” One woman from autism speaks was talking
about autism an an ‘epidemic’ I don’t like such alarmist terms.I think we need to learn to accept others who are different, and to try and understand and to help them, and to take responsibility for this as a society.”
Having had very little to do with autistic kids(apart from Mark whom he adores)I think that his comment was a very perceptive one.
Rebekah is the same way. When she has time off of school she tends to be more aggitated more meltdowns and self mutilating. I have felt that having her in a self contained class, although they are not all autistic. has been the best place for her to learn. I also feel that sometimes exposing her to change can be a good thing since that is the only thing that is certain in life. An epidemic conjures images that seem to say that you can catch autism I wish they would use different wording as to not confuse the situation more about what autism is.
I just can’t help but thinking, what if the epidemic just keeps spreading and spreading? What if in a couple of generations everyone is autistic? OK going back to more serious thoughts now.