The Day After (#390)

Typepad was down for maintenance when I first posted this, so I put it up on AutismVox as The Day After the Beach.

Part of the problem, if I may call it that, of having such a superior day as yesterday of burger-making and beach-surfing is The Day After. Charlie likes his structure and routine but it only takes one day at our favorite spot on the ocean for him to think, this is where it should be—this is the way it should be—every day: Salt surf, Daddy having him try a mussel with those Jersey shore fries, sand under his soles.
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We all woke up early despite getting back home late. We have established quarters in two rooms in the basement of my in-laws’ 60s split-level, in what was my father-in-law’s office and the TV/”rec”/guest room. Our bed is by a fireplace and Charlie sleeps with his head a foot away from my father-in-law’s Compaq computer; the rest of the house is above us, and so we were all awoken by the footfalls of the nurse and my father-in-law moving heavily with his walker. I heard Charlie chattering and found him, not smiling, wrapped tightly in Daddy’s blue blanket, and sensed that he ought still to be asleep—that he was still coming to consciousness, from his frown.

There was no more ground beef for a Charlie-made hamburger.

It was 90 degrees today, too hot for a bike ride.

We could not go again to the beach.

“Bue ocean,” said Charlie and sighed a little when I told him “I don’t think we can go today.” (All while thinking, I want to go back too!)

Charlie sighed but had a hot dog for lunch; sunk his face into the couch instead of finding his bike helmet and fell asleep for a two-hour nap; woke and asked to go to the pool (which was packed with swimmers).

I knew Charlie was disappointed. Missing the ocean is not just like not getting to have something you wanted for lunch. Missing the ocean is missing the total sensual experience of gritty sand in your hair and ears, the stickiness of sea water on your hands, the taste of salt and the way you feel part of something bigger when you’re caught in a wave. Missing the ocean is more like missing something, someone, you love a lot—it is not only sad, it is physically wrenching.
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Jim and I have remembered well Charlie’s difficulty to understand that we’ll be back to the ocean. We kept near him without being too demanding; when Charlie fell asleep at 11.30am for that nap, I did not panic about “what will this do to his sleep schedule and for getting up for school on Monday?”. I remembered that semi-frantic look on Charlie’s face on waking too early and, while he slept, rushed to read, write, eat, and wipe up the kitchen.

It is not that life with an autistic child is the kind of terrible as portrayed in the Autism Every Day video. Sometimes—more times—it is just a kind of busy boringness, in which you have to acknowledge that you cannot do all the fun things you might want to every day; in which you know that the fun of one day can translate into the biggest, hangoverish, letdown, on the next day; in which you almost start to dread doing something ultra-fun (the ocean, an amusement park) because of the fallout when you cannot do it every day.

Charlie called for his piano teacher an hour before his lesson; did most of a new jigsaw puzzle; came to the piano (“payahnoh”) and looked at the notes and played the keys; erupted into 30 seconds of backwards head-knocks in the car when he had to wait to get a take-out “burger anda fries” at a diner; sat weeping in his seat; ate the burger after downing some coleslaw and then the iceberg lettuce; fed me his last five fries; curled up beside Jim and cried silently in a delayed reaction to his getting upset. “Yallow school bus,” said Charlie, looking Jim and me in the eye before falling asleep (not too much past his usual sleeptime) with his picture schedule beside him.

Not a great day, not a bad one either.

Just The Autism Reality Show.

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Comments
6 Responses to “The Day After (#390)”
  1. Yes, yes, yes! You could have described my exact feelings on any given day. This quote especially I can definately relate to.

    “…it is just a kind of busy boringness, in which you have to acknowledge that you cannot do all the fun things you might want to every day; in which you know that the fun of one day can translate into the biggest, hangoverish, letdown, on the next day; in which you almost start to dread doing something ultra-fun (the ocean, an amusement park) because of the fallout when you cannot do it every day.”

  2. Lisa says:

    What we love, we love with a painful intensity. I hope Charlie can get back to the ocean soon. And someday, he will understand the ocean will always be there for him.

  3. Lisa, I think he is starting to learn—he handled going to a differen beach all right—-it is something this particular beach, his favorite place. But he has already shown he can handle the ride away home in the car much better than last year!

    Mumkeepingsane, it’s a feeling I often encounter every day—-around 3 – 5pm on a hot summer day when we ‘ve done everything, it seems, not time for dinner, too hot out…..

  4. Shawn says:

    We kept near him without being too demanding

    There are years of wisdom and experience wrapped up in those eight words! It brings vivid images to mind of a graceful dance, the dancers always alert, always adjusting, always looking ahead, but always dancing.

    Whoa! Did I just write about dancing?!

  5. ρεκρ says:

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