It's about 1:30 in the morning. Janey is awake. Not an uncommon story. Some nights, she sleeps, some nights, she doesn't. Nothing much seems to determine which. When she doesn't, of course we don't. Of all the things that are hard about raising Janey, the sleep, or lack thereof, is one of the hardest.
What to say about Janey's sleep? I can't be too profound, because my eyes keep closing. I can say it's one of the hugest reasons I am glad I am married, because we can trade off in the night. If I were a single parent, I have no idea how I'd even live. If you know a single parent with an autistic child that doesn't sleep, do anything in your power to help them. If you ARE a single parent with an autistic child that doesn't sleep, I wish I could help you.
Why does Janey sleep so poorly sometimes? I don't know. I can say until she was about seven or so, it wasn't as tough. Sleep was one of the easier areas with her. But something changed in the last few years. Maybe she is more aware of the world around her, and when she wakes in the night, she wants to interact with that world. Maybe it has to do with lights. Janey turns on all the lights in the house when she wakes up. When William was home, she woke him up every night by doing this, and I've been startled many times by lights suddenly going on. Maybe it's her lack of being toilet trained---when her pull-up is wet, it wakes her up. But most likely, it's just a part of whatever in her brain is different.
Not much seems to work with the sleep. We have started giving her melatonin, after finally finding a kind that dissolved (we have to dissolve all her medication in water), but I can't say as it's done a thing. The medication she takes at nighttime makes most kids sleepy, and it might help her get to sleep initially, which is not her problem, but it doesn't keep her asleep in the night. Reasoning with her works as well in the night as it does in the daytime, which is to say not at all. We can't leave her alone to play when she's asleep, any more than we can ever leave her alone for a second when she is awake. As much as I wish there was a solution that would work, I don't think there is.
At least tonight she is happy. When she is awake in the night and screaming, that is pure, pure torture. Tonight, she happily asks for things---TV, snacks, books, songs. Right now she is singing "Alloutte" at the top of her lungs, and saying hopefully to us "Want to sing that song called Allouette?" Well, Janey, frankly, not right now.
Sometimes, during these middle of the night awake sessions, I wish there was no such thing as day or night---I wish that it wasn't conventional to be awake in the daytime, and I could just be up with Janey when she is up and sleep when she sleeps. I do that, when I can, but in the real world, the days include obligations and work and driving Janey places and living a life. But I guess this is living a life too---this is the life I've been given, and the life that Janey has, day or night. And no matter how long the night is, eventually it's morning, and we start it all over again.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
1 comment:
My daughter doesn't nap at the daycare and stays up late. She doesn't get up and want to eat again at night for a while now. What worked for us is having her wear herself out being outdoors and not letting her sleep more than 2 hours for a nap at home. Lights and noise are triggers so we turn out the lights but she can turn them on. Her younger brother is another trigger but without an off switch. If necessary try turning off some switches on the circuit breaker box. We also turn down the heat down so the house is 67 or 68 at night.
Post a Comment