Not Sleeping

In my humble albeit exhausted opinion all autism research should focus on sleep and the lack thereof.

Ohmygodohmygodohmygod. There has to be some medication that will keep my child asleep at night. John has been on clonidine for months now and our nights used to look like this:

  • medication slipped into a small bowl of yogurt one hour before bed
  • one hour later: asleep
  • 2 a.m. running and crashing into our bed
  • 2:15: asleep until morning

Then about a month ago John started waking up absolutely drenched in sweat, like his body was afire. I’d change his pajama top and put him back to bed. An hour later he would still be awake. Had it stopped working? It seemed to me that the clonidine was now having an adverse effect. I called the neurologist, told him my fears and he said we could start weaning him off of it.

We’ve halved the dosage and are experiencing manic nights again — just like the good ol’ days. He hums in the dark, a new vocal stim. He yells “Downstairs?” and “Mommy’s itouch?” while pounding the pillows and pressing his cold feet into my back. He holds his hands tightly over his ears. I strain to hear what he’s hearing… a clock ticking, a fan gently whirring…I barely notice it, but it’s assaulting his senses here at 4 a.m. in the dark.

With an average of three hours of sleep a night, I am the saddest, angriest, clumsiest, barely functioning ball of nerves. I have zero patience and what feels like zero control over my life. Melatonin is like popping candy for all the good it does these days. Where is all the research on this problem? I can deal with autism, really, but this? This is my kryptonite.

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  • Oh, I think I’m just gonna copy the lnk to this post and put it on MY blog with a title which reads “What SHE said.”

    We’re right there with you with Nik. I am barely functional some days. Most days lately, it seems.

    Here’s hoping we both get answers and some sleep. SOON!

  • I agree with you,this should be at the top of the list in autism research. I am serious, we can’t be responsible for all that we need to do for our kids with no sleep. I wish I had a good answer for you, I hope you find something.

  • I am so with you–though I wish I weren’t. One of my boys has not slept through the night in two years. TWO YEARS! And the best advice I get is Did you try Valerian? HUH?????
    I feel for you—please post if you find anything that helps!!!!

  • Yes, yes, yes – what I want to know is how you write such a fabulous post, so well written, the beats just right, that echo my soul WITHOUT ANY REST?
    It’s torture.
    I have NO answers. I have some suggestions that might be useless:
    Ask Christine at Day 67 her secret — she is finally, thankfully, sleeping.
    Find a way to escape by yourself for a little rest somehow some way sometime soon.
    Tell the universe you LOVE sleeplessness. Reverse psychology, my friend… what can it hurt?
    Hey, what about white noise machines, that cancel the other offending sounds? Help or hurt?
    And, finally, try exhausting your offspring every way possible. Three legged races, tug of wars, tickle fights… whatever works.
    I don’t know. We rarely sleep. But I send you a great big commiserative pillow, and a hug.

  • Sounds horrible. We have only a fraction of what you deal with (so far)
    Hang in there. With my guys the worst symptoms seem to wax and wane (not just sleep, but also other life-disrupting things). Hope this is true for you!

  • I’m also a parent of twins, one with autism diagnosed. In fact just prior to his diagnosis our son had a sleeping test done, which involves monitored sleeping at the hospital (with lots of wires round the brain). The paediatrician suggested that some of his clumsyness could be explained by lack of sleep too. He got a clean bill though. Anyway, not that it helps necessarily, but our children (we have three now) sleep in the same room at night. We find this reduces the number of times we need to get up and comfort them. And yes sometimes one wakes up when the other cries, but that doesn’t outweigh the benefits of sleeping together. Just what works for us, every child is different of course.

  • Oh, I feel your pain. Jack is a terrible sleeper. And I’ve been sleep-deprived for years. I can really tell the effect on him when he has consecutive nights of sleeplessness. And we’re always searching for help. ((Hugs))

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