Day 2: In Search of an Oikia

Charlie getting on his bike after his second day at his new school

Monday having been so good, we were not altogether taken off guard when, on driving up to the new school Tuesday morning, Charlie did not want to get out of the car, Charlie walked in balking all the way and then crying and lots of "no's" and a secretary appeared and asked if she should get the behaviorist (yes we said), Charlie grabbed at Jim and then he ran and threw his shoes over a railing and we could still hear Sounds of Intense Unhappiness. We talked to Charlie's teacher about how he'd woken up early and sat for quite awhile in the car wanting to get going and the principal nodded and we drove into Jersey City. 


For all that we know that Charlie has
the lag about responding to new things, big changes, anything upsetting his order of things, it still hurts, to know that Charlie's hurting. There's a sort of symbiotic thread that's always connected the three of us and that makes us (Jim especially) just know, feel, sense in the air that something is going on with Charlie.


So it was kind of quiet in the white car as Jim and I drove. On both of our minds was, if this placement does not work out for Charlie, then what? Homeschooling? Some great unknown?


Jim hurried off to catch the PATH train to New York and I went to my archaeology class. I'd had a lovely talk with a student Monday about his new school. She was in my class and asked about Charlie; I gave 
Le Sigh a couple of times and described the fireworky start to Charlie's second morning. Some other students started talking about special education classrooms at their former public schools (one high school, a student noted, has the special ed classes in the basement—and "The Basement" is how those classes are referred to). More students came in and I handed back papers and started talking about the day's subject, material culture and economics from an archaeological perspective and, me being me, with a little etymology. 

Economics is from two ancient Greek words, oikia—meaning "home"—and nomos—meaning "custom, law." More specifically, I noted that oikia means "home" and not only in the sense of a building or a physical structure. It also refers to the your household, to the community of people who make up your domestic situation. It's "home" in the sense of the people who make up a home, no matter where it is—a house, an apartment, a wherever.


And I don't know, maybe that's what our real search for Charlie is all about. Not "the perfect, most appropriate" school. Not just the right town that will welcome and claim him as one of its own. But yes to a place that accepts him as Charlie, as Charlie with strengths and abilities that constantly seem in danger of being overwhelmed by his challenges. And yes to a place where Charlie is known, a place that knows Charlie.


It's way way too early to see how the
big autism center fits into this search. Most of Charlie's school situations have begun with as much promise and hope as on Charlie's first day Monday and too many times, we've just had to pull Charlie from a placement, having sensed that it was just time, if not too late, to go. After the difficulties of Charlie's previous year, the year in which he entered adolescence and grew some 7 inches, Jim and I have had to reaccess what our goals are for Charlie's learning.


The school was quiet at 2.40pm when I arrived to pick up Charlie. 

The secretary told me that the nurse wanted to speak to me. I didn't ask why. At Charlie's old school, talking to the nurse meant that something really bad had happened and/or that I needed to pick up Charlie now. I had had to fill out a pile of health and medical forms and suspected that the nurse had some questions about these, and that was indeed why she wanted to speak to me: A question about a vaccination record (Charlie is up to date on these, so it might just be a clerical error). Needing to get some health forms completed and, in the event the students swim, a doctor's ok so that he can do so, as we've indicated concerns about Charlie's neurological health. I also noted that the nursing professors at my college had asked about having students visit and the nurse seemed quite interested and open to that.


Charlie appeared, with his teacher and the behaviorist, who took me aside: After being so upset in the morning, he'd gone into his classroom and been fine. There was one flare-up around 11.30am when the behaviorist was showing him how to move the cursor on the computer; she noted that she'd put her arm in front of him and Charlie got extremely agitated, tried to throw things, grabbed. That storm passed in five minutes and he went back to his desk. The behaviorist speculated that maybe she had "invaded his personal space" and I nodded maybe—certainly Charlie (keeping that adolescent need for independence in mind) doesn't like it when I hover. (He tells me to go away when he's in the bathroom—-I do my "mom business" quickly and get out, he needs his privacy, don't we all.)


Charlie's class had Adapted Physical Education today and he liked that a lot. He requested lots of walks about the building (it really is big) and smiled happily to see the swimming pool (it's the same pool that he and I used to swim in and regarding which I wrote this 
letter to the YMCA director). The school has a cafeteria and Charlie eats lunch there now; he used to eat in his classroom at the public middle school. His teacher told me that they can always take him through the breakfast and lunch line and see if he wants anything, even just a small something.


So I spent the time when Jim and Charlie took their usual bike ride trying to figure out the Point-of-Service system, calling Charlie's pediatrician and his neurologist to get the medical forms filled out, scheduling a physical.


Spent the time dealing with the mundaner aspects of life, and reading over the Incident Report, which included a Nurse's Report. The nurse certainly didn't shrug off Charlie getting upset at 11.30am, but she noted that it was just one thing in a whole day and that's ok. Charlie's teacher and the behaviorist had the same lowkey attitude—it happened, he got over it—and noted how many skills he has. And smiled while calling out bye, see you tomorrow.

Charlie's certainly learned the word "cafeteria." He wasn't interested in his dinner but smiled big when I told him he could go to the cafeteria tomorrow for lunch and even breakfast. (Let's hope my credit card number gets inputed quickly into this Point-of-Service system.) And then—it was 6.50pm—he told me "bedtime," and was sleeping soundly by 7.45pm.


No wonder: It was a full day. And a good one, two in a row, in our oikia and I hope in yours, too.

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Comments
29 Responses to “Day 2: In Search of an Oikia”
  1. Phoebe says:

    This makes me so happy to read.

  2. emma says:

    family – οικογενεια…….
    the place and the people in it? interesting (my knowledge of Greek is purely functional)
    Charlie throwing his shoes away – what a strong statement! It’s painful leaving your child when you know they are upset, but encouraging knowing that, after communicating his distress, he moved on and had, all in all, a good day.
    I like that they pointed out the one moment was just that, one moment out of a good day. And I like that he gets to eat in the cafeteria not the classroom, it is part of the school “community”.
    Here’s to another good day in the oikia.

  3. VAB says:

    I would take it as a good sign when things go from bad to good in the course of a day. Our guy goes to a specialized school in the summer and one thing we noticed is that they take a low-key attitude to behavior problems that the folks in public school do not. I guess the public school folks have a hard time getting beyond the idea that certain behavior is unacceptable (that’s the term they use around our way). The problem with that is that you cannot really deal with something until you accept it for what it is. In the specialized school, behavior is just behavior and works with it or around it. Maybe the BAC has the same attitide.

  4. Keep your sunny side up. None of us ever knows how this next thing will work out, if the good will last…If it was a good day, grab it and run with it! 🙂

  5. Elise says:

    It may take Charlie a few days to adjust but he is in a place where they want him, like him, and understand him. That goes along way for him being happy, growing, and learning what he needs to know. Acceptance is a large part of happiness. I think things will go well. Charlie, Jim and You are entitled already.

  6. Rose says:

    Nice day! It’s funny that the teacher knew exactly what she did to upset him. I imagine attempted physical contact is going to cause him a lot of anxiety until he knows he is safe.
    I’d leave homeschooling as a last resort, spoken from a mom who does. I love it, and we’ve met some really great people. It takes a while to get into the swing of things. I know you would be a great teacher, though. Ben said I was his second best teacher. Miss Hunt, 5th grade, was ADHD herself and loved him into wholeness. He is missing out on friends/teachers like her, although she was exceptional.
    Funny, too, is the fact that a lot of the homeschoolers are a “lot like us”. There are a lot of Aspergers kids being homeshooled.

  7. Monica says:

    Sounds like this place knows and understands that “behavior” always has a cause, and that you can’t just treat the symptom. It’s great that the teacher understood immediately that she’d invaded Charlie’s personal space. Also, any typical 12-year-old is often going to resist and oppose too much “direction” and “hovering” (my 12-year-old son now refuses my “help” with schoolwork, too). Every school day is going to have its ups and downs — the important thing is “getting over it” and “moving on”, which these folks seem to understand.

  8. Monica says:

    Sounds like this place knows and understands that “behavior” always has a cause, and that you can’t just treat the symptom. It’s great that the teacher understood immediately that she’d invaded Charlie’s personal space. Also, any typical 12-year-old is often going to resist and oppose too much “direction” and “hovering” (my 12-year-old son now refuses my “help” with schoolwork, too). Every school day is going to have its ups and downs — the important thing is “getting over it” and “moving on”, which these folks seem to understand.

  9. farmwifetwo says:

    I would call it a good day. They seem to be watching and listening to him which is excellent.
    I have a comment about her arm across him… not that she invaded his space, but that he was afraid she would confine him in one of those holds.. would be my guess.
    You may want to mention that they be very careful in his space to make it clear to him that such situations are not going to occur at this school. Mine, after IBI, now 3yrs later, is still VERY suspicious of new “teachers” in his world. There’s no behaviour, but he waits and watches.

  10. fanofyours says:

    They noted how many skills he has! I’m rolling that around in my mind with pleasure.

  11. Dwight F says:

    That sounds pretty good. Our kids sometimes have bumpy starts and ends. Those darn transitions. The real test is going to be over the coming weeks, that’s when you’ll see what the staff are made of, their qualities will come through.
    At his last school G had a very rough first 7-8 weeks but the staff were patient and persistant, always building forward and not caught up in the storm of the moment. That got him through. In the end he learned so much there about self-moderation in just the single year.

  12. Sue B says:

    My son used to go to the same Autism Center (I can tell by your descriptions and the picture of the outside). He was only there for a year, about a year and a half ago. But, we only took him out because we moved out of state, not because of any problems. My son started there after many years in public school and a move cross country to be closer to family. After all that difficult transitioning, we had a lot of behavior problems and looked for a program that would be able to see beyond the behaviors to the young man within. In his year there, we were able to calm down a lot of those behaviors and he seemed to enjoy it. Of course, no place or teacher is perfect, but it was the right school at the right time for us, and it seems like it might be for Charlie too.

  13. autismvox says:

    @Sue B, thanks so much—-I have known about the ‘BAC’/big autism center for awhile; we’d wanted much to have Charlie in an integrated setting and in a small school. But the reality was that the integrated setting became completely restrictive for him—he was pretty much confined to one classroom all day except for walks—and a smaller school wouldn’t have all those facilities. Hope you’ve found a good placement for your son where you are now—-am hopeful about how they address Charlie’s behaviors. As VAB noted, it already seems that whatever Charlie does is accepted as “what is,” whereas in the public school setting, it was all unaccepted and, ultimately, unacceptable.
    Today there were “no school” ‘s on the way there (Jim drove Charlie) and then ok once settled

  14. autismvox says:

    @Sue B, thanks so much—-I have known about the ‘BAC’/big autism center for awhile; we’d wanted much to have Charlie in an integrated setting and in a small school. But the reality was that the integrated setting became completely restrictive for him—he was pretty much confined to one classroom all day except for walks—and a smaller school wouldn’t have all those facilities. Hope you’ve found a good placement for your son where you are now—-am hopeful about how they address Charlie’s behaviors. As VAB noted, it already seems that whatever Charlie does is accepted as “what is,” whereas in the public school setting, it was all unaccepted and, ultimately, unacceptable.
    Today there were “no school” ‘s on the way there (Jim drove Charlie) and then ok once settled

  15. AnneC says:

    I am really, really glad Charlie is now out of his old middle school. Heck, I don’t think I’d have wanted to even send a nonautistic kid to his prior school, it sounded like their whole philosophy was based on kids “fitting a mold” and whoever didn’t fit (as many, many kids won’t in any rigid mold) was seen as a problem.
    So while I do understand the desire for an “integrated” setting, it sounds like the old school was “integrated” only in theory rather than in reality, judging from what you described (i.e., Charlie’s staying in the same classroom all day, etc.). More important, IMO, is the *right* setting for any given student. And it’s too soon of course to tell if this is the right setting for Charlie, but it at least sounds better than the old one so far.
    The school personnel recognizing his skills and not dwelling on moments of his getting upset seems like a good sign. I remember some of the absolute worst experiences I had growing up were when I had teachers (and other adults in my midst) who would constantly keep referring back to a meltdown or similar bad moment I’d had and acting like this “meant” something ominous about my future or the kind of person I was. It actually took until adulthood for me to learn not to do this myself (I’d essentially been “taught” to dwell similarly, which meant one moment of getting really upset tended to ruin MY entire day) but things have been tremendously better since I did. I wish people would more often acknowledge the kind of effect that sort of thing can have on kids — of course crises need to be addressed somehow, but they don’t need to be focused on at the exclusion of everything else!

  16. AnneC says:

    I am really, really glad Charlie is now out of his old middle school. Heck, I don’t think I’d have wanted to even send a nonautistic kid to his prior school, it sounded like their whole philosophy was based on kids “fitting a mold” and whoever didn’t fit (as many, many kids won’t in any rigid mold) was seen as a problem.
    So while I do understand the desire for an “integrated” setting, it sounds like the old school was “integrated” only in theory rather than in reality, judging from what you described (i.e., Charlie’s staying in the same classroom all day, etc.). More important, IMO, is the *right* setting for any given student. And it’s too soon of course to tell if this is the right setting for Charlie, but it at least sounds better than the old one so far.
    The school personnel recognizing his skills and not dwelling on moments of his getting upset seems like a good sign. I remember some of the absolute worst experiences I had growing up were when I had teachers (and other adults in my midst) who would constantly keep referring back to a meltdown or similar bad moment I’d had and acting like this “meant” something ominous about my future or the kind of person I was. It actually took until adulthood for me to learn not to do this myself (I’d essentially been “taught” to dwell similarly, which meant one moment of getting really upset tended to ruin MY entire day) but things have been tremendously better since I did. I wish people would more often acknowledge the kind of effect that sort of thing can have on kids — of course crises need to be addressed somehow, but they don’t need to be focused on at the exclusion of everything else!

  17. Niksmom says:

    Smiling at the overall wonderful day. I have to say, I agree with FW1 about the arm and fear of a restraint. I suspect Charlie may have that fear for a long time given how much the old school traumatized him.
    I’m curious, what’s the helmut status?

  18. Niksmom says:

    Smiling at the overall wonderful day. I have to say, I agree with FW1 about the arm and fear of a restraint. I suspect Charlie may have that fear for a long time given how much the old school traumatized him.
    I’m curious, what’s the helmut status?

  19. Liz Ditz says:

    Following along closely from the West Coast.
    The school personnel’s response to Charlie’s behaviors seem highly auspicious to me– “it happened, he got over it” and especially “The behaviorist speculated that maybe she had “invaded his personal space”. All behavior is communication — it sounds like they are listening.

  20. karen d says:

    I love the “invaded his personal space” remark. Thank you!!! Yes, he’s a person and just because he can’t say “you’re invading my personal space” doesn’t mean he isn’t feeling that and responding to that. I think it’s wonderful that these people know this already. Good feeling!!!

  21. a parent says:

    It all sounds very encouraging. There might be bumps in the road in the future, but if their hearts are in the right place (which comes across from your descriptions of their responses) it will work out. I’m hoping that this will be a school where you can all be comfortable and settle in for the long term.

  22. Ah but is Oikea never mind Ikea cognate with “heimat” that is the post whorfian dillemma. Domicile, residence, home the thesaurerasmusatinates (now there is a polylingual conjugate to conjour with) notwithstanding.
    Language says one thing but culture and semiotics says another, and vulgar latin vs classic latin don’t go there.
    Never mind the gist of your post it is the linguistics that have got me in twist as usual 🙂

  23. autismvox says:

    The helmet is still a presence. At this point, he would only be able to go fully without it if at home all the time.
    No, it’s not ideal.
    I don’t like it, but have had to think of gradually decreasing and fading. Wish it could be a wholehearted good-bye, but there are some things that only those in one’s actual οικογενεια can and will do. I think.

  24. Hala says:

    I know nothing is a perfect fix-it, but I’m so hopeful that things may be looking up for Charlie.

  25. autismvox says:

    I think I’m going to start suggesting (in a lowkey kind of way, this seems to be good), that maybe Charlie simply wants to take the helmet off, gets really aggravated about wearing it, removes it.

  26. Regina says:

    Kristina,
    Let the dust settle a little on just how many head-banging situations under what circumstances there are in the new setting, and let Charlie and the folks get used to each other and ask them (ASAP) to do a probe of how things go with it removed and take data while they do so. If they are already taking behavioral data and know their chops, they should be able to tell whether it is actually helping or causing more problems than it is posited to be helping, and be able to tease out whether this “intervention” is neutral or the antecedent to a different set of problems.
    For the record, I am not a behavior analyst, but it’s hard to tell what would happen without trying, unless one is clairvoyant.
    JMO.

  27. autismvox says:

    Yup.
    One point that can be made: wearing it certainly has not stopped him from banging his head.

  28. autismvox says:

    @Anne C, in retrospect, I don’t think I would have sent Charlie to the school if he had been “typical” (whatever that is). It’s a joyless place, and not only for the special ed students—all discipline and a huge focus on “achievement” and “success.” In talking to Charlie’s case manager, I heard her say that the middle school is the “most restricted,” much more so than the high school.
    And what happened is as you describe—Charlie became defined and seen only as his most difficult moments. Those became the only thing we talked about. Initially that was in order to try to solve them, but then “incidents” and “behaviors” became the only topics of discussion regarding Charlie. I’m hopeful that the new school can continue to keep things in focus by noting that a “behavior” is just one thing happening in the occurrences of a day—who would want only to be seen through the lens of their toughest moments?

  29. Seems Charlie is retiring for bed earlier now. At the teacher conference yesterday the teacher said Matt is interested in girls and looking at them – I find this hard to believe, but who knows for sure. he does respond to his speech therapist who is a blonde and all other blonde therapists there who come into the waiting room.
    Matt is now having nutrition and lunch in his classroom, something I am against and believe is the reason for his running out of the classroom.

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