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.

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

Better days, and insights

Thank goodness, the last few days have been much better with Janey.  As so often happens with her, we have no real explanation of why she went through such a horrible period and why she came out of it, but it's great to have our happy girl back.  When she's happy like this, it's hard to even picture how bad it gets when she is so sad.  She hasn't bitten her arm in days (again, knock on wood!) and yesterday she only cried once, for just a minute.  It's been lovely.

I've had a few insights about Janey lately, probably due to thinking about her so much in trying to figure out what makes her happy or sad.  One is how very, very VERY active she is.  She is non-stop movement.  In that way she is very much like Tony, and like my mother.  She doesn't rest---she is constantly jumping, running around, asking for things, wanting to be on the go.  I don't think this is her autism; I think it's just her. The medication she is taking almost always makes kids gain weight, but weight doesn't have a chance on Janey.  Janey was like that from the start.  When I was pregnant with her, a tough troubled pregnancy, I never worried about her being still okay, as she kicked CONSTANTLY.  I used to wonder about whether she ever slept in there.  My boys were not like that, and are not like that.  They are more like me---prone to long stretches of not doing much active.  I realize that this drive to move affects her mood.  She needs to keep on the go, and when we can't, it makes her crazy.  I am very glad Tony understands this.  He instinctively knows when she needs to go outside, to get out of the houses, to do something with movement.  It also explains a little her lack of interest in books and reading.  More and more, we do think she can read, but she doesn't sit down and read, nor does Tony, although he was a great student and an Ivy League graduate.  Reading is too passive for either of them.  Here's a picture of Janey in her usual mode, running and jumping.

The other insight I had is how Janey not only memorizes words and music, but movements and body positions.  This came to me during one of my Total Janey Time attempts.  After school, I went into the backyard with her where we had her wading pool set up.  The day before, I had gotten into the pool with her, and she sat on my lap and played with pool toys.  That day was very hot, but this next day was very cool, but Janey was determined I sit in the pool with her again.  In the spirit of Total Janey Time, I did.  Once in there, Janey kept adjusting where my legs were with her hands, and moving my arms, and pushing me to the "right" part of the pool.  I realized she wanted to completely recreate the day before, and she had a complete memory of how we were sitting that day.  This is something I remember Janey doing way, way back, once I thought about it.  Her first year is often a blur in my mind, but I recalled playing with her at 10 months or so and having her put my hands in different positions, wanting me to play in a certain way that I realized was how we had played previously.  The insight also explains Janey's amazing ability to dance.  She channels any dancer she's seen---copying their moves exactly.  That's probably what led to the most amazing moment pretty much of Janey's life and ours---that day Michael Jackson died, when we put on some of his music and she danced EXACTLY as he did.  I think now she must have at some point seem Billie Jean being danced to, and recalled it exactly.  It must be hard having this kind of recall, because other people don't remember exactly how they moved previously.  I wonder if that causes a lot of Janey's tantrums.  She remembers a good time, tries to get another person to recreate it, and they just can't, and she doesn't know how to explain what she wants them to do.

Here's hoping Janey's good times keep up for a long time, and that I keep figuring her out, a little bit at a time.