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.