Stalking Sleep

He flicks his fingers close to his eyes in the dark. The shadows in the room make it seem like an attack of butterflies around his face. They come hard and fast and are followed by head shaking and loud outbursts — not like he is scared, because then he laughs — but more as if he is excited and retelling some complicated tale in the dark.

He has joined us here in our king-sized bed, the one we so wisely upgraded to when we moved home last year, because 2+ hours of loud shouts and maniacal laughter have already woken his brother once. He volleys between his dad and me, seeking us out with tight hands and cold feet. I glance at the clock: 3:30, he’s been at this for more than two hours. His body nearly hums with energy, with something new — I don’t know what it is, but tonight it scares me because it has a different quality — it’s an involuntary compulsion.

I envelop him with my arms and hold him close. “Shh…” I say, stroking his forehead, trying to get him to stop. He is so strong for just five, for such a skinny boy. He pulls away and turns onto his stomach and starts hammering out a beat with his hands on the mattress: b’dum, b’dum, b’dum-b’dum-b’dum, b’dum, b’dum. Over and over.

I try again, whispering a song to try to snap him out of it: “Row, row, row your boat, gently down the stream…”

“Bed!” he yells suddenly.
I say “John’s bed?”
“John’s bed!” he repeats.

Thrilled he’s communicated something (which I immediately expand in my head to Gosh, Mom, I just wanted my own bed, do I need to mime it out for you?) I carry him to his room, hopeful that he will lie down and fall back to sleep at last.

Instead, he stands in his bed and throws stuffed animals around, yelling to me: “Lullaby songs?”, his favorite music CD, one he’s been falling asleep to now for years. Lately, however, he’s asked for it even in the middle of the day — retreating to his room, alone, pushing me out the door. Bye? he urges, then closes the door. I’ve peeked in to see him organizing his stuffed animals in a circle: first the cast of Sesame Street, then the Backyardigans, then all the miscellaneous penguins (there are many). Obviously in John’s world 3:30 a.m. is no different from 3:30 in the afternoon.

But this — this energy, this yearning for something — the push and pull of his body, the drumbeat on the mattress, the finger flickers, these are things he may do during the day, but at night are magnified a thousand times. We’ve had MRIs, EEGs, we’ve expressed concerns about possible seizures — MRIs have been clean, no sign of seizure activity.

And still: something seems wrong.

He’s been on clonidine for three weeks now, but you would never know. When the neurologist said he had a medication in mind for John, it was all I could do to not jump into his arms and kiss him. I first heard about clonidine from Christine over at Day Sixty-Seven. Oliver’s early success on it thrilled me and made me hopeful that it would be the magic bullet we needed for John.

Lesson 1 — there are no magic bullets.

Lesson 2 — if we know John will be up at least every other night from 1 a.m. on, we really should go to bed ourselves before midnight.

Happy New Year, blog friends.

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  • Damn. I truly wish there were a magic bullet.

    And I’m guilty of staying up hours later than I really should. I think I would be a better–or at least less cranky–person if I went to bed earlier, but I do relish those hours to myself.

    Happy New Year! I hope there is more sleep in your future.

  • Your explanation of the night, the way he can not control his body, is just as I remember Andrew would be when he was younger. I don’t know why, but he started to outgrow that and sleep so much better around six, but still had the occasional night like that. But those nights don’t happen anymore with the medication he is taking. Not that I am a doctor, but has your doctor mentioned Risperdal? My only concern at the moment is a slight weight gain. Andrew is still thin, but he wants to eat often and is gaining weight pretty quickly. But the sleep and his overall daily living and schooling is so much better.

  • Ugh. No, it is not a magic bullet, as you know we’ve also discovered. But Oliver is seven now and I’m more determined than ever to figure this thing out. So for me, you, Oliver, John and the rest of our families, I really do hope there is a next best thing!!

    Wishing you sleep. …

  • Oh, I’m so sorry. I know how hard it is to NEVER sleep. Don’t beat yourself up for staying up late – it’s what we do for downtime, no? If I had my own magical switch, I would go to bed when the kids go to bed.

    Maybe this is a dumb question – it’s certainly uninformed, because I have had no experience with them – but have you considered a sleep study? Would that help determine an appropriate med?

    love. sweet dreams.

  • Oh, I’m so sorry to read this. I’ve had many, many nights like this, and long stretches of time with compromised sleep make life difficult for everyone.

    My experience is like Eileen’s. Sleep changed for Bud with adjustments to medications that are not for sleep per se, but that treat the underlying conditions. We still have occassional nights like that, but now they are few and far between.

  • Man, I hate the no sleep thing. Wouldn’t it be great if autism actually made our kids sleep more than normal:P Anyway, it has become easier for us as Cotton gets older. Not because he is a better sleeper, but he knows to follow the rules, and stay in his room and play until I come and get him. We haven’t tried many meds. for the insomnia, but he doesn’t seem to be affected by the lack of sleep.

  • I really feel for you, we’ve been having similar problems with our 6yr old autistic daughter and her twin. Oh for a miracle magic bullet!!! It is impossible to understand how drainingly relentless it is until you’ve been there. This is the first time I’ve seen your blog as I’m a new autism blogger, but have you tried Melatonin? I know a few people who have used it with success, (but I know it doesn’t work for all).

    Best Wishes for a Happy New Year

    Rachel
    http://www.strange-beau.blogspot.com

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