What It Feels Like (#271)

When a small cry from Charlie turns into a mini-crisis, we try and try to understand why (as happened early this afternoon) he went from watching me eat a sandwich in the kitchen, to putting on his shoes and picking up the football, to ending up on his back on the floor. He has occasionally said “bread” when opening the refrigerator; Charlie cannot eat bread made with wheat flour as he has celiac disease and has only recently been interested in us eating anything like a bagel. Jim had already taken Charlie to get fries and a burger but I’m thinking when Charlie heard “no, this is Mom’s lunch,” it bugged him.
Jim and I both tried hard to redirect Charlie. I took out Explode the Code and Charlie swiftly did two pages of exercises. Jim encouraged him to put on his coat and throw the football in the backyard and Charlie tearfully assented to both (“find the sames, f, f! find the sames, k, k!” “casstch ball”). But he was all wound up in–as if storms of worries kept bursting again and again in his head–and there was more flopping down on the grass, more caterwauls.

As parents–however much we’ve devoted ourselves to being trained in ABA, in crisis management; how many autism manuals and autiobiographies we have read–we can feel pretty helpless when we see Charlie so swept up in something in his head, something he cannot talk about. And sometimes–as in today–we get swept up into a heady version of Charlie’s confusion, into “a temporary clouding or bewildering of the normal consciousness,” into what Homer called atê.

E.R. Dodds, a professor of Greek literature, also defined atê as “a sort of stunned bewilderment” (in The Greeks and The Irrational). Bewilderment and befuddlement–why did this happen? we know what we’re supposed to do but what do we do?–would well characterize how Jim and I felt as we tried to get Charlie down from the anxiety that sent that haunted, hunted look into his eyes. Atê can also mean “rashness” and I’ll admit some rash words were hurled across our kitchen and living room before I dragged the vacuum cleaner up from the basement and set Charlie to vacuuming the first floor of our house.

Charlie’s meticulous eye for every dust mote clicked in and soon I was pointing to this and that spot and the floor shone.

Physical activity with a specific goal–making a bed, carrying up a laundry basket of clean clothes, vacuuming–has seemed a good activity to direct Charlie to when he is upset. He has to concentrate on the task at hand, there is a concrete result, and the task has a definite beginning and ending. Jim is planning to have Charlie rake up the legions of dead leaves and pinecones and even to mow the lawn a bit now that <a title=”Sumer is icumen in (#266)” href=”http://www.kristinachew.com/autism/2006/03/sumer_is_icumen.html”>spring is here.

The atê struck us particularly hard because we had done everything we could all morning to keep things ordered and busy for Charlie. Jim took him on a long bike ride and I explained what was going to happen on the schedule. I don’t know, but I guess you can do everything and then some and still find yourself in a state of “stunned bewilderment.” Homer uses the word atê to describe how Patroklos (Achilles’ best friend) feels after he has been struck by the god Apollo in Book 16 of the Iliad. Patroklos is beyond disoriented, shaken, shocked; he literally does not know what has hit him (and that something immortal–divine–has struck him, and that it is all over).

Of course, I can try to explain how I feel in words and with reference to literature, and Jim and I have been reviewing “what happened” all day long. Charlie cannot, or at least cannot tell us what he was thinking in words. What Charlie suffers is beyond what we ever could. But the baffling confusion that engulfs parent wanting to help the boy they love too much can reach epic proportions—to see Charlie who had been all smiles a half-hour before a-wailing is to wonder “what just hit us?”, like Patroklos after Apollo has issued his blow.
There is a “disorder” called Cassandra Affective Disorder in which families with a relative with Asperger’s Syndrome (especially if it is undiagnosed) are not only “affected by AS behaviors” but even begin to exhibit those very behaviors. This is hardly what happened to us today–indeed, I would question the validity of “CAD.” I would never say that our sorrow at seeing Charlie upset is equal to what he feels. But we do feel really awful to see it all. Watching someone you love as much as we love Charlie suffer is to suffer something pretty painful.

Charlie, still sniffling, and I drove off for his verbal behavior session while Jim went to visit his parents in the rehab hospital. Charlie ran right to Miss Cindy and gave her a huge hug and “was just great, all smiles.” Attention and eye contact were up and all the other therapists noted how Charlie kept trying toys he had shown no interest in at all. The day ended with Charlie finding an old Wiggles DVD and, with some Disney music and a lullaby playing on his iPod, watching the Wiggles happily. Jim, recalling our trip to see the Wiggles, proceeded to check on Greg’s health, only to discover that Anthony had had hernia surgery too couple of years ago.

Greg, as Jim read out to me, is better, though the Wiggles have had to use a stand-in for him as he recovers. And we three here in Autismland are all feeling better after weathering the earlier part of the day and the behavior squalls, and a lot of feeling.

5 Responses to “What It Feels Like (#271)”
  1. “Cassandra Affective Disorder” was invented as essentially a tool of aspie-bashing, IIRC.

  2. Kassiane says:

    If it’s from FAAAS, it’s definately aspie-bashing. Woe to them who have to deal with the autistic (dripping sarcasm).

    And since when are those on the spectrum devoid of emotional expression, anyway?

    Gr. I shouldnt click links first thing in the morning. Or at least should close the window when I see irritating organizations’ URLs.

  3. Camille says:

    Maxine Aston is anything but a nice helpful woman, her name is on that Cassandra page.
    ballastexistenz and Kassianne are right, it’s Aspie bashing at it’s worst.


  4. kyra says:

    oh, kristina, i know those moments–at least our version of them. “Watching someone you love as much as we love Charlie, suffer is to suffer something pretty painful.” that is so very true. i am thinking of all of you this sunday evening and sending our best thoughts. i had the tiniest thought of how sometimes storms preceed enormous shifts and i wondered about that given charlie’s great session, showing interest in those toys, great eye contact, etc…?

  5. Martijn says:

    I don’t want to start a big argument on such a lovely blog (Charlie is just great!), but having been diagnosed with Asperger’s very recently (age 27), I do recognize a lot of what people around me has been (and are) going through. Not being able to give emotional support -which, though hard to admit, I am not most of the time- is something not to be underestimated! Thinking about all the (potential) friends I’ve lost by my not-understanding and non-supportness makes me rather sad. So, while I’m not claiming to have read everything on this FAAAS site, seeing things written down has helped me much to see the other side.

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