Manic no sleep night

I hope you'll forgive me if any of this blog post doesn't make sense.  I'm operating on very little sleep.

Janey had one of her no-sleep nights last night.  These seem to be happening every month or two, but no matter how often they happen, they are impossible to get used to.

We're starting to be able to see the sleepless nights coming, though.  Yesterday afternoon and evening, Janey was very, very happy and excited.  I put a picture on the Facebook companion page to this blog, showing her huge smile as we left for a car ride. I'm including here three other pictures I took of her.  They all show the look, the look that foreshadows a very long night.   When bedtime came, and her usual bedtime is 7 to 7:30 (her choice, we wouldn't make her go to bed that early, but she gets up early and usually likes a lot of sleep), she was still hyped up.  She got on the bed, watching videos on her iPad as she usually does going to sleep.  But she didn't sleep.

Watching her on nights like last night, there are signs.  Every movement of her body is exaggerated and somehow stiff.  When she moves around, it's with big, wound up moves.  Her eyes get an excited look we don't see other times.  And she has an attention scan at these times of about 10 seconds.  She switches videos on YouTube at a pace that seems impossible.  As I listened last night, it almost seemed like she was using the videos as sound clips in some kind of rap song, switching back and forth and always stopping the audio of each clip at the exact same place to move to the next one, over and over and over.

The hours passed.  We took turns laying down with her, and then both did.  When we got up, she got up, running around the house and asking for things---rides, showers, walks, food, videos.  She'd go back to the bed when we asked, but would get back up in seconds.  If we stayed with her, she'd stay on the bed, but in the hyped state.

At times like this, she constantly re-arranges things around her.  One of the things she tries to re-arrange is my arms.  Somehow, she doesn't want to see my arms when she looks at me.  Her preference would be to have them behind my back, where they are out of sight.  Time after time, she moves them back to where she wants them. 

Around one in the morning, she got a foot cramp, and frantically said "Does your foot hurt?  Does your foot hurt?"  I could see her foot cramped up, and told her to stand up on it to help it.  She did, and jumped up and down for about 3 minutes straight.  I got her back into bed.  She started asking over and over "Angelina?"  Earlier in the night, I had typed Angelina into her YouTube Kids search area, and when some pre-populated choices came up, I had her pick "Angelina Ballerina"  She wanted to do that again.  I did it a few times, but a few times was never going to be enough.  I know I could have done that hundreds of times and she'd have still wanted more, as part of a routine that would include the quick switching of vidoes in-between.

At two, I was no longer able to keep my eyes open, and Tony took over.  She didn't sleep, of course.  She got on the bus happily at 6:30.  She is at school now.

These nights are awful, and we have no idea what causes them.  It's possible she got her hands on some chocolate at school, it being the Easter season.  But it could just be one of her periodic manic times.

We give her melatonin, most every night.  It works well, except when it doesn't work at all.  When she got the foot cramp, we gave her some Motrin, in case she was in pain she couldn't tell us about.  I don't know if it had any effect.  I am pretty sure nothing we could do or say or give her would make a bit of difference on manic nights.  Her own internal demons or angels or hormones or whatever are far stronger than anything external, at times like these.

During the day, when we've slept, we, and I mean the larger "we" of other families living this life, can be the kind of parents that match up with the books, blogs, advice, standards, of autism parenting.  At night, when we would do almost anything to just be able to sleep, we can't.  And that is where I don't think anyone who hasn't spent a night like our last night can really, truly, deeply get this life.  It's the initiation into our club.  It's the shared tribal ceremony.  It's the bonding experience that by its very nature gets experienced away from the others it's bonding us with.  I try to keep in mind, during those endless nights, the rest of you out there.

Please, Janey, sleep tonight.

Counterintuitive Wins Again

Janey's sleep started to be more and more of an issue around the beginning of August this year.  What was an occasional night waking turned into an every night thing, with her staying awake for hours at a time.  From about the middle of August until around a week ago, I think we had only one night with full sleep.  It was becoming harder and harder to take.  We tried most everything we could think of, including a new medication, melatonin and any behavior approach we could find.  Except one, and that is the one that finally might have worked.

Tony mostly deals with Janey at night.  This is because medical issues make me very tired and also because he is better at getting back to sleep after being woken up.  We have a rule between the two of us, though, that if he or I get overwhelmed, we just tell each other and switch places.  It's necessary, with a high need child like Janey.  However, Tony still does the brunt of the night work, and I greatly appreciate that.  About a week ago, as I slept, Janey once again woke up, and in the morning, Tony told me he had done something new.  He completely embraced her being awake.  He didn't tell her to go back to sleep, he didn't try to keep things quiet, he didn't try to make deals with her, he didn't get upset, he didn't show a trace of annoyance.  He simply accepted she was awake, and had fun with her.  He played the recorder and they sang, they watched some YouTube together, they drew (which to Janey means making her J's on paper), they laughed together---they had a great time.  And after about two hours, Janey fell asleep and stayed asleep, the rest of the night.  And since then, for the last week, Janey has slept all night.  She even slept in on Sunday morning---we all slept until about 10.  It was incredible.  A couple days, she napped, and even then, slept at night.  Every night, we are astonished that another night has gone so well.

Now, of course, as I'm writing this, I'm knocking on wood.  And I in no way think the sleep problem is solved.  Janey is cyclical, and it just could be that the bad sleeping time had reached a natural end.  But it also could be that Janey needed to see that night or day, we were there for her.  Maybe she kept waking up hoping for a time like Tony and she had.  I don't think Janey gets the difference between day and night much---not in that she sleeps all day, but she doesn't understand why we aren't as alert at night when she does wake up.  Maybe now, if she wakes for a minute, she isn't feeling she has to test to see if we will still be happy to see her.

So, so often, Janey has shown us that the regular parenting truths don't work with her.  They don't work because she is autistic, and doesn't have the same motivations and reactions to how people act as most kids do, and they also don't work because she is intellectually disabled.  She doesn't have the ability to reason out things like most kids do.  I don't think she can think out "I really shouldn't bother them at night.  They need sleep.  I need to let them sleep.  They won't be happy if I wake them up"  Her mind doesn't do that, because of the autism and the retardation.  I believe she thinks on a more basic level, a more self-centered level, because that is what she is able to do.  I have to believe she's doing the best she can.  By trying to deal with parenting issues the way that would work best for most children, we are not honoring who she is.  It is something that only now I think I'm truly understanding.

So, at least for now, if Janey awakes in the night, we will do our best to make sure she knows we always are happy to see her, day or night, and we will hope that it keeps working.  My fingers are crossed.

Night Waking without Day Sleeping

For 5 out of the last 6 nights, Janey has been awake most of the night.  The problem is never falling asleep.  She goes to sleep easily, between 7:30 and 8:30.  But then, around 1 or 2, she wakes up.  She wakes up completely, ready to rumble.  She asks for food, videos, a bath, "go to the ice cream store", whatever.  She seems to have no idea it's night.  Nothing, I mean nothing, we can do gets her back to sleep.  And so we are awake, at least one of us.  We try to take turns, so that Tony and I both get some sleep.

I've of course researched this and talked about this before.  I've gotten lots of helpful ideas this way, or at least helpful in theory.

1.  Create a safe space, put Janey in there, don't let her out, so you can sleep anyway.

Our apartment is small, but with one son in college and the other mostly sleeping on the 3rd floor of our house (the apartment is small, but the overall house is big, and we are on the 1st floor), we do have spare rooms.  However, putting Janey in one of them alone is not an option, because of her self-injurious behavior.  If she's upset, and being alone in a room with us not answering her whims will make her upset in a short amount of time, she bites and scratches herself.  No matter how empty the room is, she has the tools to hurt herself, and that is not something we can live with.

2.  Melatonin

Tried it.  No effect, none.  Nothing.  Maybe it works better to get kids to sleep at night, and not for night waking, or maybe, like with a lot of medications, Janey has a very high tolerance.

3.  Other medications

Janey's new medication, Tenex, for the first few days seriously made her tired.  In the daytime.  But even then, not at night much.  After a couple days, it doesn't seem to be making her tired at all, which is very good news for the day, as it's helping otherwise, but very bad news for the night.  Our pediatrician said we could give Janey Benedryl when she was just not sleeping.  One Benedryl and I'm out like a light, but again---no effect on Janey.  None.

4.  Completely giving Janey no attention, besides just saying "time to sleep" and lying down with her.

Yeah.  Tried that one a million times.  Janey is not terribly dependent on our encouragement through attention to keep asking us for what she wants.  We can say "time to sleep", turn off all the lights, and still, a hundred times, a thousand times, she says "Kipper?  Ice Cream?  Bacon?  TV on?  Go in the car?  Backyard?"  If we don't answer, she starts screaming, assuming we didn't hear.  Or she cries.  Or hits us.  Believe me, we've tried the no response bit for hours on end.  No effect.

5.  Giving in and staying up with her, assuming she'll sleep when she's tired

She likes that one, but the "sleep when she's tired" part never arrives.  It just becomes a daytime routine at night---videos, food, jumping up and down---and she usually winds up staying up all night, from 2 on.  And then all day, until 8 the next night.  She just seems to be one of those people who doesn't require a great deal of sleep.

6.  Punishments

Like what?  No punishment that we could actually use has any effect on Janey.  Time out?  That requires us to sit right there and monitor her, which she has learned to tolerate until the time out ends, at which whatever behavior started it starts right up again.  No videos?  Sure.  She'll just scream, cry, bit herself, freak out, keep us up all night.  That's our most common try---saying to her "If you are going to be awake, no food.  No videos.  No entertainment"  She doesn't give up.  I think this has to do with her weak sense of what is night and what is day.  Sure, she thinks, we are being resistant, but eventually it's somehow that magical time when you get breakfast again, and if she keeps asking and screaming OVER and OVER and OVER, that time will arrive.

7.  Rewards

Again, like what?  Stickers on a chart to get a reward?  Janey has zero understanding of this.  Promises if she will stay in bed?  She has no real wants except immediate things, and she doesn't understand long term promises, like things that will happen in a few hours.  We could say "If you stay in bed and let Mama and Daddy sleep, we will get you ice cream in the morning"  She doesn't get what morning is, she doesn't make the connection between doing something now and getting something later.

I could go on and on.  I don't want to be defeatist.  I very badly want a solution here.  I have a lot of hope that once school starts, her sleep will improve.  The night waking still occurs during the school year, but much less.  And I realize this might just be a case of her not needing the sleep we do.  Maybe, I hope, in 10 years or something, she'll be able to be left alone awake while we sleep.  I have to admit, though, when we are walking around like zombies day after day from not sleeping, that thought isn't a lot of comfort.

But...the days are better lately.  And that is great.  If we were only awake to enjoy it.