What we mean by “short on sleep”

Those who know our family know that we are short on sleep. All of us…very, very, VERY short on sleep. Kids on the autism spectrum often have sleep problems due to dysautonomia (body’s inability to regulate itself effectively), adrenal disfunction, seizures, etc. Wickett is no exception. We have yet to isolate exactly what the factors are that have led to his particular sleep problems, but have not given up trying. Boba doesn’t have an excuse as far as we know…:) His issues are mostly behavioral (not physiological), which are mostly my fault, but it’s still a problem.

I just wanted to try and let you have a sneak peek into exactly what I mean when I say that sleep is…”rough going” in our house. Here’s an average night for us:

6:30 pm: Wickett gets his evening medicine, which includes his one prescription med (Clonidine, a vaso-dilator that helps to calm him) and some other supplements. If he doesn’t get this med, I literally wonder if he’d sleep at all.

7 pm–After in PJs, start to settle down, watch a video while we snuggle on the couch.

7:45 pm–Kids go to bed. I have to bounce on the yoga ball while I hold Boba, singing to him until he falls asleep and I put him in bed. Wickett climbs into bed by himself and says he wants to snuggle with one of us, but he’s usually asleep by the time I finish with Boba.

9:00 pm–Wickett wakes up. He goes potty. He goes back to sleep fairly easily.

9:45 pm–Boba wakes up. I have to bounce on the ball to get him back to sleep.

**This continues on and off until maybe 12 am, with the boys typically wake up anywhere from 1-4 times. Each. Usually they are easily guided back to bed, but it’s still disruptive.

10:00 pm–I get into bed, knowing that the night will not be restful. But getting to sleep is often challenging, as we are just waiting for the other proverbial shoe to drop. I have a hard time letting myself fall asleep, knowing that I am just going to be woken up soon.

11:30pm–Boba wakes up more fully. Over the next 30 minutes I’ll get him back to sleep, go back to bed myself, only to have him get up again 10 minutes later. Just enough time for me to sort of fall back asleep and get really annoyed when I am woken up again. After 3 or 4 times I give up out of exhaustion (emotional and physical) and just go get in bed with him.

Approximately 10 minutes after I’ve gotten Boba back to sleep and fallen asleep in the twin bed with him, Wickett (whose twin bed is just across the room) wakes up and is wired like Al Pacino at the end of Scarface. We re-dose his Clonidine, chase him around the house, hold him in a therapeutic hold on the couch (basically like a human straight-jacket), until he finally calms down enough to go back to sleep. I get in bed with him.

3:30 am–Boba wakes up again and I go back over to his bed.

Anywhere between 4:30 and 5:30 am–One or both of the boys wake up for the day.

That’s not a bad night, that’s not once or twice a month…that’s pretty much EVERY night. *THAT’S* what I mean by “short on sleep.”

I share this not to make you feel sorry for us, not to have a pity party, but because it’s the reality of our life (and so many other families who have kids with ASD), and it’s part of this journey I’m sharing. It’s hard, and we’re working on it (constantly), but it’s HARD.

Namaste.

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4 thoughts on “What we mean by “short on sleep”

  1. That sounds utterly miserable, L! šŸ˜¦ Your house may not have the space for this, but have you tried separating the boys while they sleep? Seems like (to this clueless non-mom šŸ˜‰ ) their sleep struggles are being aggravated by hearing each other wake up frequently in the same room? Anyway, I hope HARD that their sleeping habits change soon, for the better. ā¤

    • Anna, I *wish* that would make a difference. I know it might not seem like it, but they sleep through a surprising amount. And if we separated them it would mean losing the playroom, which is important as it provides a place for Wickett to do his work (ABA based stuff, etc), as well as a place for their toys and books to be corralled. But I do think we’ll separate them temporarily when we try and get Boba back on a better schedule, which will likely involve some crying…

    • Thank you for your kind words. Doesn’t feel that way much of the time, but I suppose I’m too “close” for true perspective.

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