Of Sleep, and Other Beautiful Things (#120)

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Since last Thursday night, something momentous has been going on in our house:

Charlie has gone to sleep and has fallen asleep before 11:00pm.

Tonight it was 10:00pm. I have been able to sit (lounge) on the couch with one of the many soft blankets he likes to wrap himself in and read a book. Jim and I have a policy, courtesy of dear departed Mike, of (1) not talking about Charlie in the front of himself and, certainly, not in the third person (rather than saying “what is he saying?” with Charlie beside him, Jim will say “what do you mean, pal?”); and (2) not talking about Charlie’s day at school, in therapy, and everything else as he is lying in his bed before falling asleep. The bedrooms are on the second floor of our house, which is not large; the floors are hardwood, so sounds reverberate and carry. Perhaps Charlie does not understand every word, but his ear is attuned to any notes of agitation, to the dissonant sound of anxiety, worry, and anger. We have often heard him chortling and humming and sometimes, if this went on for an hour plus, we would hear small cries that escalated into weeping words: “All done all done all done no sushi no burger no fries all done Barney garbage AW DUNN.”

Charlie is now doing a therapy session (ABA, verbal behavior, or speech) six days out of seven days and I have had an unformed hope that the extra hours of instruction would settle his mind and tire him out more. Once Charlie is asleep, he really is like the idiomatic log and does not wake up (as has been the case since he was an infant)—even though, for the past two and a half years, we have had to get him up at least two times a night to go to the bathroom. This has been the case ever since, in Feburary 2003, Charlie started taking Zoloft for his often extreme anxiety, and for the head-banging that seemed sometimes to happen because of his anxiousness and his inability to communicate how he felt in words. Another side effect has apparently been insomnia: Once Charlie had an unremarkable bedtime between 9 and 10pm; over the past year or two, bedtime has occurred no earlier than 10:30pm and actual sleep not until near midnight. Needless to say, this accounts for Charlie’s extreme grogginess in the morning and many difficult starts to his school day.

Or maybe Charlie’s insomnia is not from the Zoloft at all. Charlie has often seemed at his most alert around 9pm, when he is often talking so loud and clear (“I want bwown cookie. Gong Gong!”). His eyes are bright and he engages in races with himself that end with a jump and splat on the old blue and white couch. We have long heard from other families about their children’s difficulties going to sleep, or staying asleep. We always make sure that Charlie has some kind of physical activity in the afternoon or evening, be it a walk or a swim at the indoor pool. Last year, Charlie and I went to the pool almost every evening and sometimes he would doze off, cheek on the couch cushions, and sometimes the swim seemed to stimulate him to action and I’d be glancing at the time moving closer and closer to midnight.

I had spoken with our home consultant about a bedtime program, while noting that Charlie has often had a so-called “behavior incident” in the first two hours of school. I could see him slumping in circle with his head in his hands, refusing until or past the last possible moment to sit up and talk about the calendar. “Try doing something when he’s really exhausted,” the consultant suggested. “And then do the same thing again, and push back the time a little. And you’ll have to get him up at the same time on the weekends, at least for a while.” I thought of all the times I have stood by the black car, back door open, Charlie bent over in the back seat, in the front circle around his school. I have had to shoo cars behind mine to back up, as I have never been sure how long it would take Charlie to rouse himself and get out (and carrying him out is a sure-fire way to spark an angry response. Charlie must walk out on his own two feet.)

A change was long overdue.

Last Thursday night I read Charlie Time to Sleep. He had certainly had a full day and walked up to bed by 10.30pm and was soon asleep. Every day after, there has been nothing too “stimulating” after 9pm–photos on the computer, music, TV–and I have made a point of getting Charlie up by 7:30am and keeping him awake, and Jim and I have made 10:00pm the Time After Which There Is Nothing Else Interesting Going On Downstairs. And Charlie has been…..going to sleep at a reasonable time.

This morning I got Charlie up before 7:00am. His sheets needing changing; he was soon dressed in his school clothes and curled up on Jim’s and my bed under a mound of soft blankets. Jim kept talking to him as he rushed around and Charlie smiled. At 8:00am I got Charlie out of the bed, with a soft yelp, a run down the stairs and a fling on the couch, a throwing himself on the floor and a big nodding of his head to the floor (and nothing more) while looking me full in the eye.

Before we started our home ABA program, Jim and I attended Crisis Management Training with the therapists and the consultant. I was prepared or hoped I was. I stood behind Charlie and put my arms under his armpits and grasped his hands. I turned sideways to his back-arching and I bear-hugged him. He screamed, like the blare of a fire drill alarm, the cry Jim and I have come to hear as signaling autism, after hearing it coming from a child on a stilled swing in a video seen long ago. My eyes stung with sweat and at one point I bear-hugged Charlie off the ground. For most of it, it was the two of us standing so close together, Charlie’s screeches turning into sobs and sorrow.
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We were late for school; we drove slowly and I took a deep breath and I told Charlie how Rosa Parks had died and how she always acted with grace and dignity. “That’s what we have, sweetie,” I said at a stoplight. “Grace, and dignity.”

Charlie was still crying through the early part of his school day, the rest of which went fine. He was happy to snack and play his boomwhackers for my parents. He worked well and hard in his home therapy session, matching letters and words to pictures and words. He gobbled up steak (“only the best for Charlie,” my mom always says) and broccoli stalks and turned up his nose at the too-soft noodles my mom had cooked for him. He wore half of his pajamas to Toys R Us and Petco where my parents and Charlie and I went after dinner. There were kittens in cages piled three high; Charlie poked in a finger to touch their fur, watching. He was altogether uninterested in the ferrets and mice. (“He wouldn’t look at them,” my mom reported.) After crumbing up our kitchen with gluten-free chocolate cookie crumbs, he lay down behind me on the sagging blue and white couch. And he sang, clear like a bell, and smiling:

Buh’erfly, buh’erfly, fie, fie away; buh’erfly, buh’erfly, haappy ahllll day.

Had he seen the Barney video at Toys R Us in which the Backyard Gang perform that song?

It was time for bed, indeed. Charlie had been waiting up for Jim; he stood on the couch behind my dad, who rose to the challenge and piggy-backed a grinning grandson up to bed. Jim returned from teaching his evening class a few minutes later and sang to Charlie.

I’m happy to settle for “happy some of the day,” or even just for one fine moment with a boy named Charlie Fisher.

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