Stucks (#357)

As predicted, Friday afternoon (starting at 12.40pm) was a struggle for Charlie whose internal clock sensed (1) the impending weekend without school’s predictable structure and (2) that 1.30pm—the time when his old school ended on Friday—was nearing. I had written to his new teacher about Charlie’s “Friday anxiety” and they were careful to calibrate how far to “push” Charlie until 3pm came and Charlie’s first week at his new school was over.
Over pretty successfully, I have to say. Starting on Thursday, Charlie has been looking at me very seriously and saying “Yallow schoolbus” and waiting for me to respond “Yes, the yellow schoolbus will come tomorrow.” Ever since November—-when Jim and I took Charlie out of his public school classroom and he stayed home with my mother for a month until we found a school for him—-Charlie has been, I think, haunted by the fear that he may find himself out of school and stuck at home, a situation that he has somehow learned is Not Right.

In other words, Charlie wants to be in school—-Charlie likes being in school, and so much the more if the classroom and the teaching, the speech therapy and the OT and the P.E., are set up in the carefully structured manner—ABA, for Charlie—-that have helped him to learn best. And I suspect that not being in school—and stuck in the loose chaos of “at home” days” without rides to and from different places—has become one of Charlie’s biggest fears.

“Stucks!” said Charlie, looking at me over dinner. A few minutes earlier, I had made a reference to his having a good week in his new school and how well he was doing with so many changes.

How hard it is not to get stuck on encountering a bend in the road—some curious sign—some fascinating stranger who has a magic secret, a magic pill—on the long journey in Autismland.

You read about how “one child” was “cured” from something—no milk, secretin, this or that intensive therapeutic regime, chelation, who knows what tomorrow.

You read and you look at your own child who ate the same dinner as he has the past six nights, who has refused the special vitamins you spent the month’s grocery money on, who had “an off day” at school “but he’s such a good boy.”

You read and you put down the book, shove aside the xeroxed article your friend’s co-worker “just had to pass on,” get up from the computer.

You pause.

You press your lips together because you can’t now, never, not——

Bathtime had better come soon or bedtime will be past midnight.

You feel really, really, stuck. You want to see the progress and you’ll take anything: “He had an okay day.” “No screaming today when getting off the bus!” “He asked for a break on his own!”. You hate so to see your child stuck.
You feel even more stuck, life on endless voicemail hold; you think, if only we could get pass this autism thing………

As the mother of a boy who is 9 years 1 month old—-who really is almost as tall as me—I know it is not that we are “stuck with a child with a disabling condition” or “stuck with a life that sucks” or “stuck with autism.”

We are stuck with, and stuck on, Charlie, and more than luckily.

Without Charlie and these years lived and the years to come in Autismland, I would not be where I am, what I am, who I am, standing on a New Jersey sidewalk watching my not-exactly-little-boy stand up in the pedals and speed-race down the street, Jim bringing up the rear.

Though not predicted by any expert seven years ago, Charlie is a good student, a champion bike rider, and (as his teacher wrote) one sweet boy.

5 Responses to “Stucks (#357)”
  1. Ennis says:

    I’m sorry that yesterday stucked. Tomorrow, it might move?

  2. It has been a lot worse—-I’m trying to help Charlie get out of being “stuck” as quickly and gently as possible. Not bad so far today but we shall see—-

  3. Wade Rankin says:

    An occasional case of the stucks is a comorbidity of life itself, not just autism.

  4. Ennis says:

    Funny, I guess that is an area of similarity. When my NT-self gets stuck, I find the best cure is to move, literally. Like Charlie, I find that physical motion cuts through mental clutter.

  5. Julia says:

    Bathtime had better come soon or bedtime will be past midnight.

    I have those sorts of evenings. 🙂 It’s hardest when my husband isn’t home — getting 3 kids ready for bed and all the bedtime rituals done is difficult, and I’ve juggled the order of things or combined things that usually aren’t combined to get everyone through it and in bed. Fortunately, Sam is forgiving of disruptions in the routine, as long as he gets his tuck-in and a book to flip through before he goes to sleep. It’s his younger brother who is the most difficult and needs everything just so at bedtime these days.

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