What You Don’t Know Is What You Don’t Know

Charlie waiting outside his middle school

Shannon asked about me doing a classroom observation of Charlie to help with the current school situation. I would love to do that and to explain Jim's and my understanding of how Charlie communicates via what he does—via his behaviors—to the teachers, aides, and therapists. Unfortunately I don't think my suggesting that to our school district would result in me observing as:

Our school district specifies that parents may observe the classroom from October through May, on scheduled visits. (Teachers also make monthly home visits during these months only.)

When, this past summer, I asked about being present during a speech evaluation for Charlie, I was informed via an email from the Special Education Director that:

"the presence of any other adults would be a distraction to your son and therefore tamper with the results"

Accordingly, I kind of suspect that, being "just a parent," a request to visit Charlie's classroom would not be "allowed" due to concerns about "tampering with" something or other.

Back in August, Jim and I arranged for a behaviorist who used to oversee Charlie's home ABA program to observe him during summer school. The school district's behaviorist was there (not unexpected). Right after his old home behaviorist left, Charlie got upset (as manifested by grabbing); everyone I've mentioned this to (including Charlie's neurologist and a neuropsychologist) said that it was not surprising that a "behavior" took place following the departure of a visitor. A request for Charlie's old home behaviorist to visit his classroom in September was not "allowed," and I was told by the school district that I was to notify it/them in writing as to the "purpose of a second visit."

Behavior is communication. For all of us (school districts, mine, etc. included).

Since last week, we have been been driving Charlie to school. He has to wear the helmet on the bus as specified in an April letter written by his case manager. As he's only wearing it at our town's public middle school, Jim and I decided on driving him and hand over the helmet to an aide or teacher. (Charlie is to wear it home on the bus, as also specified in the April letter.) 

Charlie's taken the bus to school every year that we moved into our current town, since June of 2006. Back in 2003-2005, when he went to school in a different New Jersey town, I drove him most days and picked him up, too. Doing so enabled me to be at the school with the students and teachers and staff there, to hear the school's sounds and note people coming and going and see what was hanging on the walls;

 to get a sense of the pulse of the school as a community.

Charlie's current public middle school is large (with some 1400 students) and its beige-brown buildings are all on one level. It is located not very far from where his grandparents' house of 30+ years is. There's a big parking lot at the entrance, a circle in front of the school, and some swampy fields beyond. There's no track, basketball courts, etc. (the high school has these, and so, come to think of it, did one of Charlie's elementary schools).

My public junior high in Oakland, California, was just about the same color as Charlie's and the buildings were all one level too, but they were terraced (the school was in the Oakland hills) and you could walk out of most of them into breezeways. There were also—as there were at every public school I attended in California—portable buildings in rows between the main buildings and the woodshop classrooms. It was a very different sort of school than Charlie's: I remember my junior high as a place of chaos, noise, objects flying in the air, and stuff going on by the sticky picnic tables near where the AC Transit buses lined up, and amid the pine trees. It's quite quiet in Charlie's middle school and it's possible, I suppose, never to go outside the whole school day. 

Charlie riding his new old bike

I don't remember if there were any special education students at my junior high school. That's not because there were none (this was the very early 1980s). I was completely oblivious to anything but my books and homework (which there wasn't enough of, or enough that was challenging) and my small circle of friends. For all I know, more than a few Charlies were in some classroom out by the woodshop room, or in a less traveled portable. I just don't know.

And as for what the other students at Charlie's school know about him, or are told: That, among things, I just don't know.

What I do know: This boy is taking to his new old bike like a natural.


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Comments
16 Responses to “What You Don’t Know Is What You Don’t Know”
  1. M says:

    strange they think a concerned parent would be a distraction…yet a bulky, stigmatizing helmet is no problem.
    very frustrating.

  2. Hai Dang says:

    Dr. Chew,
    Looking at the pictures of your husband hanging out with Charlie and reading your posts, I can see that you both deal with this situation much better than I would be. I like the fact that you continue to be positive in dealing with this terrible situations (the helmet) by creating a fun environment for Charlies outside of school. Hope you three continue to have the strength to go through these difficult times. Teenage years are the most difficult times for all children. I am hoping the helmet does not damage Charle’s self image or his belief in the kindness of humanity.

  3. Emma says:

    Even if the school district believes that they are right (about a residential placement etc)I can’t see why they would refuse to accomodate a parents request for an external assessment of Charlie from his former therapist, or the input about the way he communicates from you -if they want to put their point across what is there to object to?
    It makes no real sense. Unless they have something to hide which is unlikely, it’s seems you and Jim probably are viewed negatively by them, which is affecting their collective behaviour and they really are being inflexible, which is in the long term detrimental to Charlie.
    The “them” and “they” starts to sound a little conspiracy theoryish, and I know there are alot of precedures etc that have to be followed for legal reasons, but at the end of the day it’s the well being of the students that should come first.
    Side note – I hated school.

  4. MATeacher says:

    We welcome parents to visit our classrooms at any time (though we request 24 hour notice so we can prep the students for the disruption in routine, we don’t require it.)
    Does your school have a plan in place for those “take-downs” yet? It sounds like they’ve become more than “extreme measures” at this point, and they need to write (and have you sign a new BIP at this point, or look at a new placement if they can’t accommodate Charlie without them. Surely there is a collaborative or private school that can. Honestly, and I know how you feel about inclusion, it is not going to be more segregated than what Charlie is getting now squirreled away in some corner of that huge school, never actually interacting with the rest of the school.

  5. a parent says:

    It’s sounding like this Friday’s meeting has the potential to be an IEP meeting from hell. I’m not a long enough blog reader to know if you’ve ever gone through one of those. Some things that I learned (only because when you hire an expensive lawyer you take their advice and find out they’re well paid because they are successful):
    1. Always complement three things before criticizing one. I can’t tell you how hard this was – only petty stupid things were done right and I wanted to talk about their epic failures.
    2. Always provide them with a path of retreat from a confrontation that does not require them to admit fault. Again, very hard because I wanted them to apologize.
    3. Let your lawyer/advocate/partner do the talking when you’re emotional. If you cry while they talk pull it together and compose yourself. Do not explain why you’re upset or how you feel. It will make them defensive. As much as you’d like them to know how it feels to be in your shoes, that’s not the point of the meeting.
    The series of meetings we had 3.5 yrs ago were some of the hardest things I’ve lived through. We spent $15K on legal fees (another $3K on evaluations) and it was worth every penny. These days I’m often the only person to stand up for lawyers, but one saved my son from a disastrous placement.
    You mentioned Gandhi before – good role model. They will be angry and you have to meet that with such diplomacy that they can’t continue to fight. In my experience they will be vindictive after the meeting when they give you what you want/deserve, and that too has to be met without fighting back (my favorite was saying how awful it was that some parents had to bring in lawyers because it makes the meeting confrontational – I so wanted to say “they were always confrontational, my lawyer just kept it from being totally lopsided.”)At that point they’re goading you to see if they can have an excuse to take away your victory or at least talk bad about you.
    I hope this doesn’t sound like a lecture. I’m just sharing my very costly (emotionally and financially) experience.

  6. farmwifetwo says:

    Are you certain it’s the right program for Charlie. At this stage no matter what you do, I don’t think they are going to accommodate him even with a court order to do so.
    The IBI/ABA program here had a good rep… and it was a poor fit for us. Remember, no program ever talks about their failures.

  7. farmwifetwo says:

    Are you certain it’s the right program for Charlie. At this stage no matter what you do, I don’t think they are going to accommodate him even with a court order to do so.
    The IBI/ABA program here had a good rep… and it was a poor fit for us. Remember, no program ever talks about their failures.

  8. Beth says:

    Sadly, I think that this situation has become impossible. From everything you have written, it sounds like they have made up their minds that Charlie belongs in a residential setting and, at this point, all communication to you about Charlie will be slanted to support that determination.
    I think the poor kid is being set up to fail, not to succeed, so that they can support their argument. I think any potential for progress is being ignored.
    I am not a naturally suspicious person but I really feel that they are more intent on proving their point than in making his placement work.
    I hope there is a solution for you guys. I’m sorry that you are going through this.

  9. Beth says:

    Sadly, I think that this situation has become impossible. From everything you have written, it sounds like they have made up their minds that Charlie belongs in a residential setting and, at this point, all communication to you about Charlie will be slanted to support that determination.
    I think the poor kid is being set up to fail, not to succeed, so that they can support their argument. I think any potential for progress is being ignored.
    I am not a naturally suspicious person but I really feel that they are more intent on proving their point than in making his placement work.
    I hope there is a solution for you guys. I’m sorry that you are going through this.

  10. Bonnie says:

    Kristina, I remember oh so many years ago when I requested that my sister who is an occupational therapist be allowed to view a class Casey was in for first grade that had proven trouble ridden from the get go,suspiciously so. They were going to let her do this for an hour, one hour. But she forced her presence for the whole day and found so much wrong without even trying to find it. Despite this, things never changed and got worse when her finding and ways to resolve issues were revealed. THis really backfired for us, when all we were trying to do was get to the root of the problems. Needless to say, he moved on to another program after a frustrating and tearful meeting. I wish now we would have stood our ground more, but alas we didn’t…..

  11. autismvox says:

    I’ve a lot of doubts and something beyond “concerns”……… as I’ve given our school district the address to this blog I’ll have to more to say after Friday’s IEP meeting.
    (Hi School District, Special Ed Director, Case Manager, and everyone else.)
    And nothing sounds like a lecture, I need to know what you all think…….things have…..gone in a certain direction.
    Home continues to be good.

  12. Leila says:

    Kristina, some schools do have a sort of “anti-parent” policy and I wonder if it’s even legal to stop a parent from observing a classroom or an evaluation. Our school district has been good so far, and I noticed that many of the experts were happy to have me around during evaluations because when they see a child initially they can’t tell, for instance, if a given verbalization is a script or a spontaneous sentence. Once my son was 3, he was doing a Cookie Monster impersonation and the psychologist thought he was stimming – I had to explain what he was doing, which was actually pretty normal and funny. My point is, the parent can help the evaluator because he knows how to interpret the child’s behaviors more than anyone else, and this will avoid misinterpretations by the expert who is evaluating the student.

  13. autismvox says:

    I definitely tried to explain this! Visits are “allowed” in October through May and I a bit of correspondence with the special education administrators about not being able to be at the speech eval. The “tampering with the results” phrase was the result of a final message on the subject from the special education director; she cited the school’s “visitors policy” (though one would think that a parent seeking to be present at an eval ought not, perhaps, simply to be lumped together with other visitors of various sorts and functions?)
    The assistant special ed director told me that if I wanted to withdraw my consent for the eval, that was my choice. When I walked Charlie to the door the morning of the eval, the speech therapist repeated that phrase.
    Not that I had ever said anything about “consent”: It was an answer to a question that I was not asking.

  14. autismvox says:

    I definitely tried to explain this! Visits are “allowed” in October through May and I a bit of correspondence with the special education administrators about not being able to be at the speech eval. The “tampering with the results” phrase was the result of a final message on the subject from the special education director; she cited the school’s “visitors policy” (though one would think that a parent seeking to be present at an eval ought not, perhaps, simply to be lumped together with other visitors of various sorts and functions?)
    The assistant special ed director told me that if I wanted to withdraw my consent for the eval, that was my choice. When I walked Charlie to the door the morning of the eval, the speech therapist repeated that phrase.
    Not that I had ever said anything about “consent”: It was an answer to a question that I was not asking.

  15. autismvox says:

    @Bonnie, I was just glad that our former consultant was able to visit. Another friend told me that an advocate in NJ did not want to deal with our school district.
    @a parent, thinking Gandhi….
    @Emma, all of the “nonverbal communication” we’ve been getting from the school district has said, well, quite a bit!
    I was not very fond of the public junior high school I went to, I have to say.

  16. Jasmine says:

    I sat here last night, trying to take in this latest piece of info, and looking for the right words to say. Unfortunately, my only thought was that if this were my baby, I’d be pulling him out of that place as soon as I could — even as I knew at the same time that we wouldn’t be able to run from everything forever.
    Thinking of all of you …

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