Friday, August 19, 2016
Operation Sandman, Night 3: "O Sleep O gentle Sleep, Nature's soft nurse, how have I frightened thee, that thou will no more weigh my eyelids down and steep my senses in forgetfulness?"
I haven't gone upstairs yet. I was going to go up and go to bed, but until he settles down, I don't want to walk by his room or have him know that I'm in our room at the end of the hall.
This is why, even though we alternate nights sitting with him, it's not really a break: last night, he got up and went into our room once, while I tried to stop him. Plus you can hear him, and it's hard to sleep when you know at least two people are up and having a terrible time of it.
He's almost crying up there, like just short of actual tears. Sweetie keeps telling him quietly to go to sleep.
Tonight I'd actually planned, right after dinner, to go up to bed early, at like 6:30. But Mr F wanted to go swimming, and he wanted me to go with him, so I took him and Mr Bunches while Sweetie cleaned up. Then when we got home he wanted a ride in the little car, so I took him on that, too. He and I have both been up for 18 hours now. As I listen to him, I know how he feels.
We don't know why he can't sleep, and he can't tell us. All we can do is keep trying. If you try to read up on whether there's some sort of connection between autism and insomnia, the facts are all over the place and hardly worthy of the name 'facts.' People give wildly varying statistics about how many kids with autism have sleep problems (one study that is widely cited said "44 to 83%" of people with autism have sleep disorders. That is: 4 or maybe 8 out of every 10. That's not science. That's a guess.) Many studies don't compare those numbers to the general public, and nobody really knows whether this autistic person is really like that autistic person so even when someone can tell you why he or she can't sleep, it doesn't mean that it applies to every person with autism -- any more than everyone gets insomnia for the same reason.
When you have sleep disorders, they do a sleep study. I had to have one done for a life insurance exam a while back. An at-home study has you wire yourself up with various things that measure heart rate and breathing and the like, sleeping with a little electronic pack on you. It's doubtful at best that we could get Mr F to wear one. Clinical sleep studies require that you go sleep in a strange room while people watch. When we went to a hotel last week (Mr Bunches picked that as his big summer thing: we went to a hotel a few miles away), Mr F couldn't sleep and paced the room back and forth, getting so anxious that Sweetie took him back home to sleep while I stayed with Mr Bunches, who was already asleep himself.
When Mr F goes to the dentist, if he needs anything more than a quick peek inside he has to be given general anesthesia at the hospital. The last time he had that, they gave him the stuff they give you to relax you so that you're almost asleep by the time they wheel you in. He fought it so well that it took me and three orderlies to hold him down while they put the gas mask on him.
So we don't think he'd do well at a sleep study, and if he has sleep apnea or something similar we may never know. (He doesn't snore.) Some doctors will do the tests in the kid's home, spending up to two months prior making frequent visits to get the child used to the equipment and the doctor.
In one recent study, participating kids with autism took 160 minutes to fall asleep and enter REM (or dreaming) sleep. Kids without autism took 100 minutes. While sleeping, kids with autism spend about 10% less time in REM sleep than control groups. Nobody is sure why that is. And some of the results suggest that rather than sleep patterns being caused by autism, they may be a factor contributing to the condition. (One girl with autism had tonsils and adenoids removed to help her sleep apnea; she became more socially responsive and exhibited less problematic behavior after her sleep improved.)
It's 9:14 p.m. now. Things are quiet upstairs. Goodnight, Mr F.