Thursday, January 31, 2013

How do you solve a problem like night waking?

For the last week, Janey has woken up every night around midnight or 1 am, and stayed up for a couple hours.  It's incredibly tiring.  Because I am eternally hopeful, I went internet searching for solutions to this problem.  Big surprise---the ideas I found would not work with Janey.  It makes me feel like some kind of defeatist who somehow relishes being able to complain.  Growing up in Maine, that kind of attitude was not greatly admired, as so I think I worry too much about appearing that way.  Believe me, I wish there were solutions for more of the issues with Janey.  I'd love to have solutions.  But the most helpful thing I found in my research was actually just reading that lots of other parents of autistic kids have the same problem, and are at the same loss as to what to do.

The problem with the autism-specific ideas that I found was that they were, as I often find, aimed at higher functioning kids than Janey.  A big theme was just accepting the waking, and letting the child play on their own so you could still sleep.  That would not work.  Janey can't be unsupervised.  Not for a minute.  So if she is awake, we must be awake, one of us, anyway.  Thankfully, I have a husband who shares nighttime duties with me (and probably does more than his share), or I would have long ago gone to the place that mothers go that just can't do it anymore (and I'd like to know where that place is, as I might just have to visit there some day).  Another idea involved pictures, or diagrams, or a clock with a sun and a moon on it, to explain why we don't get up in the night.  Yeah...that is not going to work.  If I could explain things like that to Janey, she'd probably be at the level that she could be unsupervised in the night. A few places suggested medication.  I am not adding any more medication to Janey's routine, and even if I did, they didn't sound hugely effective with night waking, more with getting to sleep in the first place, which isn't Janey's problem.  She goes to sleep just fine---better than most kids.  She goes to sleep TOO fine, often---too early and too deeply, and gets the sleep she needs to get over that edge, better to be bright and cheery and raring to go in the wee hours of the morning.

I think there is something in Janey's brain to do with sleep that is just different.  When she wakes up, and it's dark, it doesn't seem to trigger in her that she should go back to sleep.  She must see that it's dark, and that we don't seem as lively as we do in the daytime, but the way she acts is exactly the same as she acts during the day.  She'll ask us to cook things, she'll ask for TV, she sometimes asks to go to the store, or to school.  She'll put her shoes on.  We sleepily tell her no to those things, that's nighttime, that we need to still sleep, and she might echo back what we say, but it makes no real impression.  It doesn't seem to matter what we do or say.  She'll go back to sleep when she's ready to go back to sleep---usually about 3 am.  Then she sleeeps until 5 or 6, when she's up for the day.  She almost never naps.

One place I read said their child does the waking up just in the winter.  I think that might be partly true---I should try to figure that out.  They said they think it's tied to exercise during the day, but it could also just be part of a seasonal cycle, as many things seem to be with Janey.

As I wrote yesterday, Janey is in a very cheerful pattern lately.  The sleep is tough, but compared to the crying all day times, it's not terrible.  I nap during the day if I have to, Tony goes to bed very early if he has to.  We manage.  But it's another thing I project into the future about.  What will happen if Janey learns to wake without waking us up---if we are out cold and she wakes up and gets a notion to do something dangerous?  We are light sleepers, by necessity, and she always wakes us up if she's up.  But if she doesn't, someday, that's the really scary part.  And I'm too sleepy today to deal with that thought.

6 comments:

Sophie's Trains said...

Sophie is very similar. She seems to love to sleep- she goes to bed early, she still naps everyday for 2 hours. The problem? She often wakes up around 2 am and stays awake for hours. Then goes back to sleep around dawn. We did see a neurologist because the developmental ped was perplexed by her sleep (she falls asleep in a new situation almost immediately, no matter what time in the morning). The neurologist explained it like this. We all have sleep cycles. Deep sleep is from bedtime till just after midnight. Then light, REM sleep and then deep again. We all wake up in the light phase, look around, adjust pillows, etc. but we go back to sleep and not remember it. She said autistic kids have trouble with that part. Why? They don't quite know yet :) chalk it up to that damn autism puzzle. A lot of people do melatonin, we are scared to. Have you tried it?

Suzanne said...

That is some great information! It matches Janey's pattern exactly, just like Sophie's. Sleep until midnight is no problem, sleep around 3am is no problem, it's those hours in between! Wow, very interesting. I haven't tried melatonin. I read a lot about it today, but I am just nervous about it. Janey takes a couple medications, which it took us years and years to give in and give her, but I just don't want to add anything else, even something "natural"! Maybe in a couple MORE years I'll give in on that!

1 out of 88 said...


Sorry I've been out of comment loop, I've been dealing with a concussion on top of work & the babies. I read your blogs on my phone but for some reason I can't comment from my phone so I'm usually just thinking of my response & nodding in agreement with y'all being so grateful I found you ladies and then passing out from sheer exhaustion before I get a chance to actually go to the desktop computer and reply.

This is a subject that fascinates me. Willow has gotten a little better with her sleeping, but she had issues with this same thing for quite a while & I still have some concerns about her sleeping pattern.

I don't think you got it but I had inquired on your blog if anyone else has used melatonin a while back (I'm bad at commenting I comment on old blogs - I'll figure this blogging thing out someday haha). The DP that formally diagnosed Willow recommended it last year but we have as of yet to try it. We are reserved about it although if ever we get to "that" point (that point we all have internally, I think y'all know what I'm talking about...) I'd imagine we'd consider it first for sleeping.

The exercise piece is interesting. We definitely notice her sleeping better (not always longer) when she's had a lot of exercise. This makes total sense, but for some reason is something that we often forget about finding extra physical activity for her to do, simply because all of us (her included) are doing so many other things. So I understand completely your reservations with Janey & Sophie. AD swears by it (I'm not sure if you follow his blog Suzanne but here is a link about melatonin http://autism-daddy.blogspot.com/2011/12/all-about-kyle-and-sleep-or-why-i-bow.html). It looks like it doesn't keep you asleep so unfortunately if you decided to try it you'd have to give it to her when she wakes up. I think you would appreciate his blog anyway I believe his son & Janey are about the same age too.

Now I am currently waiting for amazon to deliver a weighted blanket. Has anyone heard of/tried these? After some research I've heard they work wonders for children & adults with autism and/or sensory issues. Does Janey like deep pressure? I know it really calms Willow down when we squeeze her or give her firm pats on the back. She absolutely craves it. So I thought it would be worth it to give the weighted blanket a go. They are a little pricey (yikes), but I figured if it helps her sleep, it's worth it. I'll let you ladies know how it goes and would be very interested if you have had any experience with them.

I'm sorry you have to deal with that. If you're anything like me especially since my thyroid decided to check out on me it's terrible to get out of bed and I never feel rested. The FMS doesn't help either. Hence the comment at 4:38am :)

Hugs ladies! :)

Yuji said...

Our son has had similar sleep issues for pretty much his whole life. We have had a few stretches where he would sleep through the night, but it doesn't last too long.

We use melatonin as it helps him to fall asleep. We really notice a huge difference in his ability to fall asleep if we don't give it to him. However, it seems to have no impact on getting him to sleep through that 2 AM period.

Sorry that I can't offer any ideas. I do sympathize though.

1 out of 88 said...

Lol I reread my comment and it doesn't make much sense. I meant to specify that AD swears by melatonin. I'm going to blame my not making sense on the concussion ;);). I can only get away with that for so long!

Tori B. said...

You could buy a safety sleeper or a Noah's world bed. Though they are really expensive. There are all kinds of padded rooms it areas to keep an autistic child safe while their parents are asleep.