Charlie’s Web (#285)

I don’t think Jim and I are unusual among autism parents in feeling that everyday we throw ourselves into helping Charlie, into trying to weave together a web of activities and experiences that will add up to “a great day” from waking to sleeping. And once the day is done we often feel like the spider Charlotte at the end of the children’s novel Charlotte’s Web who, having used all of her thread to spin webs proclaiming the greatness of Wilbur the pig (“SOME PIG”), expires quietly.
Hospitalvisit_2
So the morning was Dad’s (barber, lawnmower repair shop, burgers and fries). The afternoon was Mom’s (swimming pool, drive to verbal behavior session). The evening was all three of us (take-out burritos, trying to figure out the best way for Charlie to enjoy looking at his photos without any ruckus). The web we three (a good team relies on the coaches, trainers, and players altogether) weave together has a complicated pattern and is tightly woven, but there inevitably seem to be holes and tears we can’t detect.

One of these is a kind of “transition trouble” for Charlie. It happens when we are out in the car and have to return for a short period to our house, to dump stuff, rest up, grab a drink of water. So after swimming some slow laps at the pool and taking a long hot shower, Charlie and I came home as we had an hour to go before driving out to his verbal behavior session. He was standing on the heater vent when I heard a few knocks and then found him looking right at me.

Pause.

Longer pause.

“Would you like something?”

“No.” Pause. “Bye bye!”


Charlie went to sit by the front window and kept saying “bye bye” when I said a word or two to him. I was cutting up an apple for his verbal behavior session when there was a simultaneous cry and I could see his forehead lightly rattling the window. I got him away from the window; he cried as I slipped his down jacket (which happened to be on the chair) under his head; he lay on the floor for a few more minutes then got up, wrapped his blanket around himself, and was soon smiling.

Charlie had been his best-ever at the barber. In fact, he sat calmly as Michael gave him a buzzcut and Jim chatted with another barber, Vinnie, about Italy and took in the Italian music playing in the background. Charlie sat alertly in the front seat when he and Jim picked up the lawnmower (it takes up the entire back of our old green stationwagon). As Charlie and I were later driving in the black car, I could tell, via a fast rear-view mirror glance, that he was looking avidly out the window for his personal landmarks. For the first part of his verbal behavior session, a “typical” peer was present and Charlie manded for apples and rides on a chair with her; all the staff commented on his heightened eye contact. “Good bye, Cin-dee, goo’ bye Cin-dee!” he smiled to his verbal behavior therapist without prompting. He walked slowly into his grandparents’ hospital room and offered to shake Grandpa’s hand twice (Charlie is still working on hearing the difference between “GrandPPPa” and “GrandMMMa”): “S’akes, Gramma!”

Returning to the story of Charlotte’s Web, a parent would be analogous to Charlotte who goes out of her way not only to help Wilbur, the “runt” of the litter, but to save his life; Wilbur indeed becomes a local celebrity, thanks to the words Charlotte literally weaves in the door of Farmer Lurvy’s barn. Charlotte is a kind of “surrogate mother” for Wilbur and much autism literature has been about autistic children by their parents, like a new novel, Daniel Isn’t Talking, by Marti Leimbach.

More and more autism literature is by autistic authors. Charlie has plenty of creative non-verbal and (more and more) verbal ways of telling us his thoughts and I’m looking forward–and working hard towards–the day when I’m reading the web of words he has put together for all the world to exclaim over.

It’s Charlie’s web, I think, that will mend those holes and chinks that Jim and I are still learning to detect.

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Comments
2 Responses to “Charlie’s Web (#285)”
  1. squaregirl says:

    Oh Kristina, I look so forward to that day and have no doubt that it will occur…and in my comments to Charlie, I will remind him how much of a joy and blessing his mother is to her family, students and the autism community. I am so grateful for you and Charlie!

  2. KC'sMommy says:

    Hi Kristina,

    It think it is a terrific idea to have a typical peer at Charlie’s verbal behavior sessions! Was the child around the same age as Charlie?
    Kristina you are so in tune to Charlie and know just how to help him when he’s having a tough time with transitions. You are an excellent Mommy and I am a very thankful Mommy that you are a blogger! I can help K.C. too and I learn something new everytime I stop by your blog. It sounds like Charlie is able to pull himself together pretty quickly these days after a tough time:) Great job Charlie and what a good Mommy you have:)

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