Sleep, Ice, (No) Gas, My “Suitcase,” Latin, Gore-tex. And CAM.

Charlie and Jim go on a quite cold bike ride in early December  Don't know about you, but we had a real Monday Murphy's Law morning. Most likely as a result of waking up so early on Sunday, Charlie was wrapped up tightly in his blankets with less than five minutes to go on Monday. After a little coaxing (which is already too much for Charlie these days), he pulled himself on his own, got dressed and into the car all while saying "Barney video," a phrase that can be a precursor to him getting very upset (i.e., having a "neurological storm"). We dropped Jim off at the train and then drove quietly (except, of course, if you're listening to The Clash, Charlie's current request, it's not so quiet). We were not yet near the school when the orange "you need to get gas" light went on.

Prompting me to think, can't they make those lights blue or green, I don't need extra alarm to get me to get gas! 

When we got to the school, we discovered that Saturday's snowfall had rendered the sloping parking lot a sheet of crackling ice. Charlie rarely falls but I instinctively, and as lightly as I could, held the back of his right arm as he got out of the car. He made it fine to the covered walkway and then started crying. This escalated very fast into something more like weepy howls, whereupon he threw his bookbag over the railing, and wailed as we went inside. Another teacher started talking in a gentle voice to Charlie. We both stood nearby and then Charlie took off his shoes and socks and dumped those over the rail and then his coat (but I grabbed it). Two behaviorists and an aide appeared and spoke to Charlie soothingly. At first grew silent and started walking, then he started running at top speed.

I let go a deep sigh. The other teacher told me she teachers 9-year-olds, adding "it happens to everyone." I nodded, oh yes.

We do know why families turn to treatments such as those based on Complementary Alternative Medicine like those critiqued, and rightly so, in a recent Los Angeles Times article. Things can be really, terribly tough and really just awful. But it's not that Charlie and kids like him are "aggressive" or "violent," but that they have tremendous, complicated challenges with communication and their sensory and neurological systems, and these can lead to what we call "neurological storms" in Charlie. Today reminded me again that some good teaching, and a deep dose of compassion, can go a long way.

I had to get to the second-to-last day of my Elementary Latin class so drove to the nearest gas station which charges top dollar. I pulled up behind another car, only to be informed by the attendant that the pump for regular wasn't working. So I backed out at an odd angle, drew a consternated stare from another woman (sorry, the white car's gas tank is on the right side!), turned off the engine, looked at the clock and called a student to tell the class I would be late. As I paid, the attendant said to me, "I like your suitcase, it's very nice." I presume he meant my bag—I must really carry too many books, dry erase markers, laptop, papers "just in case." (And now that Charlie finishes school later, sometimes I get to his school and have some extra minutes; nothing like working in one's car.)

I was late for class but still able to get some Latin in. And when I picked up Charlie, the word was "great day," even with a fire drill and hearing another student screaming in a high-pitched tone.Charlie was eager to get into the car, but quite fine, thank you, and so for the rest of the day, even after his hands got so cold on a bike ride with Jim that he was doubled over and wouldn't budge for quite awhile. A stop at the bike store was the answer and when I showed Charlie a nice pair of Gore-tex gloves, he put them on and didn't take them off for awhile.

I confess. Our difficult experience with the school district and the ABA program has left us saddened and unsure about how much education—which Jim and I have always believed in as at the core for helping Charlie—can do. Charlie's not yet been a month at the new school (which is ABA-based, but not as "rigid" as in Charlie's previous program) but so far it's been good and we feel that, if we drop him off anxious and unhappy as he was this morning, that's not how his day or he himself will be. His teachers at the new school show a kind of understated confidence and readiness that they've seen whatever Charlie's doing, and that it can be handled. And, that he can get through the day, and that a day, no matter how bad the start, can still be "great."

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Comments
11 Responses to “Sleep, Ice, (No) Gas, My “Suitcase,” Latin, Gore-tex. And CAM.”
  1. Monica says:

    It’s compassion, understanding and a sense of community that will be at the core of Charlie’s education. Charlie needs to be in the setting where all of you can best support him, working together, and where he feels most secure; then he can be his most receptive self. Some “storms” will be inevitable, but it’s getting past them and moving forward that is the goal.

  2. emma says:

    I like the “it happens to everyone” – it seems it’s viewed as a part (and I mean only a part) of life, not the main focus. Which hopefully means the education program won’t revolve around “dealing with behaviours” but will actually include some…. education!

  3. farmwifetwo says:

    I’m envious that they seem to be interested in Charlie and wanting to be part of a team effort.
    I’ve dealt with our school for years. I have few issues with the overall school system but this school…. If you get the right teacher it’s good, but most of them… I’m calling the spec ed guy on the board again… which has them mad b/c I’ve crawled over heads… But I’m going to file the IPRC paperwork this week and let’s get it done. I want it written out “though shalt do within so many days” instead of “we’ll get there”.
    Sounds stupid but we’ve fought over toiletting. He has to sit or BM become even a bigger fight…. Guess what they taught him last week… without a meeting.

  4. Judy T says:

    Unfortunately, it seems that in mainstream environments, teachers and staff tend to be more concerned and worried about how kids are behaving when it doesn’t “look right” than they are about how the child is feeling. In good specialized environments, staff tends not to be scared of the behaviors they see, and more in tune with the kids with whom they work. When my daughter was working at a school with mostly residential students, she was often pinched, hit, etc., and sometimes bitten. Once, she assured me, “that was a happy bite.” Can you imagine a public school teacher distinguishing between a bite that was because a child was happy and one that was “aggressive?”

  5. Niksmom says:

    Your lat couple of sentences sums it up so well. I love the compassion and understanding, the patience and willingness this school’s staff has in working WITH Charlie and not forcing hiim to bend to their will. So important.

  6. Niksmom says:

    Your lat couple of sentences sums it up so well. I love the compassion and understanding, the patience and willingness this school’s staff has in working WITH Charlie and not forcing hiim to bend to their will. So important.

  7. SueB says:

    Glad to hear things are going well at the new Big Autism Center. Your experience there so far matches ours when our son went there; we also sometimes had difficult starts to our day. But the perspective there wasn’t “oh no, we’re going to have a lousy day,” rather – “we’ll get through this and the rest of the day will be fine.”

  8. Bonnie says:

    I’m so glad Charlie ended up having a good day. It’s always those difficult or odd mornings that end up making for a good day. I can relate to your feelings on being at a place that understands him. I’ve tried and tried to integrate into least” restrictive environments”, but somehow the least restrictive tends to be the least knowledgeable, or least capable, etc. I just want to set Casey up for success, and thats what it sounds like they are doing for Charlie

  9. Louise says:

    @JudyT – “mainstream environments, teachers and staff tend to be more concerned and worried about how kids are behaving when it doesn’t “look right” ” …
    It’s not so much about what “looks right,” I believe, as it is about keeping some kind of order in usually overcrowded classrooms. Disruptive children can make it very, very difficult to teach to an entire classroom of 24 children. It’s especially difficult if a child in the classroom is biting, pinching, etc. other students – who won’t have the ability to distinguish a “happy bite.” In mainstream classrooms, with the constant pressure to “teach to the achievement test”, teachers are not given a lot of space to care for each child’s individual feelings.
    I am not defending mainstream classrooms, just explaining that even the most involved and caring teachers in them don’t have the needed “luxury” of paying attention to a lot of emotions. Our school funding system, and our educational system’s post-NCLB emphasis on “achievement scores,” makes it extremely difficult for teachers to address their students’ emotional needs – and many, many teachers are quite miserable about it.

  10. autismvox says:

    @Louise, Unfortunately, even though schools may not have the resources or teachers the training to teach children with many needs, they often act or say that they do have such. Certainly that was the case for Charlie in the public autism program he was in. It was only when things were at a fairly awful point that the district started assenting to the fact that they could not teach him. One wishes they could have been able to recognize that far earlier, for the children’s and staff’s sakes!
    @Bonnie, I think I am finding the same, that there is the sense that a child is to fit into an “LRE,” rather than changing and adapting the “LRE” to the child’s needs. At this point, I am looking for success and happiness and a sense of being, well, wanted and appreciated, and so far (fingers crossed) that seems to be the case!
    @Judy T, We have had some therapists—SLPs in particular—who understood that some of Charlie’s “challenging behaviors” were saying something other than they seemed to. And it just occurred to me that, being SLPs, they were more attuned to all types of communication….
    @Emma, yes, imagine, a school focusing on…..education!
    @SueB, I feel a massive sense of relief to have that attitude from the teachers, rather than looks of fear and dread when Charlie was agitated in the morning. It certainly changes my day!

  11. autismvox says:

    @Louise, Unfortunately, even though schools may not have the resources or teachers the training to teach children with many needs, they often act or say that they do have such. Certainly that was the case for Charlie in the public autism program he was in. It was only when things were at a fairly awful point that the district started assenting to the fact that they could not teach him. One wishes they could have been able to recognize that far earlier, for the children’s and staff’s sakes!
    @Bonnie, I think I am finding the same, that there is the sense that a child is to fit into an “LRE,” rather than changing and adapting the “LRE” to the child’s needs. At this point, I am looking for success and happiness and a sense of being, well, wanted and appreciated, and so far (fingers crossed) that seems to be the case!
    @Judy T, We have had some therapists—SLPs in particular—who understood that some of Charlie’s “challenging behaviors” were saying something other than they seemed to. And it just occurred to me that, being SLPs, they were more attuned to all types of communication….
    @Emma, yes, imagine, a school focusing on…..education!
    @SueB, I feel a massive sense of relief to have that attitude from the teachers, rather than looks of fear and dread when Charlie was agitated in the morning. It certainly changes my day!

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