The Need to Know (#541)

As an autism mother, there are a lot of things I wish to know. And I do not mean answers to the Big Questions, like “what causes autism” or “what will happen to Charlie when he is a senior citizen”?
I am talking about some quite little things that, were I to know them, I could get on with the business of my day with a bit more ease, a bit less tug on the heart strain. Things like “how did Charlie do after we waved him, leaning a bit forward in his seat, off on the bus?” “Did he like the new gluten-free roll I put in his lunchbox?”

The internet and email in particular—which have helped me to connect with so many others, autistics, autism mothers and fathers—have made communication with Charlie’s teacher not only much easier, but also possible in the course of the day.

So when Charlie got upset on the bus for the first time (the bus had to stop twice—-he had attempted to head butt but the bus aide was there), I found out 40 minutes after the fact when I got to my office. I was able to tell his teacher that he had had a strangely slow start (the bus had pulled up while he was still in the house) and that he had slogged his way across the grass. His teacher told me he had laid himself down on the stairs on getting to school, sat down to do a sorting program, thrown himself backwards on the floor, was fine in a few minutes.

The day went well from then on until about an hour before school was to end, when he started crying, and his teacher called to ask what I thought about putting him on the bus. We both thought he should ride it and he was in good spirits on boarding and for the rest of the afternoon during an ABA session, a dinner that ended with several clementine oranges (was it Lay’s chips that used to have the slogan “betcha can’t eat just one?”—that would be Charlie with the clementines), and a trip to the library during which I realized I had completely misplaced the library book he had checked out a few weeks ago.

When Charlie’s teacher emails and calls, it feels as if we are mutually problem-solving. I would far rather receive today’s emails and calls then just open up a notebook on which was written “Some trouble on the bus. Great day” or even nothing. At this point Charlie’s linguistic skills do not extend to explaining what happened to him at school and I need to know. And his school knows that what happens at home and what happens at school are interwound in a tight fabric: We need to keep communicating, if we are to do our best by Charlie.

In Autismland, “what you don’t know can hurt you”—-especially when the “don’t knows” are little things that add up to one big worry.

As for the Big Questions—the “what causes autism” kind of questions—I have to say, I find them hard to worry about in the face of Charlie running into his bedroom and flipping over blankets calling out “s’irt on! Mahm, shirt,” and then “reada book!”

5 Responses to “The Need to Know (#541)”
  1. I worry every day about what’s happening with Patrick while he’s at school or on the bus. It’s so hard not to know!

    Ah, clementines. Patrick almost eats a box a week.

  2. Charlie just polished off his crate tonight……after putting some in his lunch.

  3. ashley says:

    What a thought provoking post Kristina. I’m pretty much with you regarding the things I wish to know. How Leo became autistic has never been a preoccupation. I don’t know why, perhaps it’s because I am only capable of handling what’s in front of me no matter what the issue is.

    And both Leo and Sydney are big clementine eaters! Leo ate 5 in one sitting just yesterday!

  4. Liz says:

    Hey, even the neurotypical like clementines! I’ve eaten 5 today. Like candy only better. I leave the peels in my car for the scent.

  5. I can barely eat them because Charlie wants mine……. have to get another crate today!

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