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.

You catch more flies...

You catch more flies with honey than with vinegar.  That's a phrase I heard often from my mother, and it's a true one, one I try to keep in mind.  Sometimes, with Janey, it can seem like it just doesn't work.  Nothing seems to work---honey, vinegar, being patient, being strict, being anything.  But I was in despair over the seat belt situation, and decided to try some honey therapy.

I thought about what has worked in the past to keep Janey happy in the car.  The unbuckling mostly seems to happen when Janey is upset or restless, and wants something I can't get her while driving or in the car at all.  It follow that if I keep her happy and occupied, she will be more likely to stay in her belt.  So I downloaded a whole bunch of versions of her new favorite song "Turn Your Radio On"  I wish there were more versions even of it out there, but I found 7 or so.  Then I stocked up on her favorite car snacks---Pringles.  I decided that during the drive, we'd keep her music playing and her snacks flowing.  I did that for the last few rides---success!  Janey was happy and content, and no seat belt taking off!  I praised her heavily after each ride, which usually doesn't seem to affect her either way, but in this case, maybe because I had been SO loud and angry about the unbuckling, seems to make her very happy and proud.

I don't pretend the problem is solved, but my point here kind of is that once again, I had to learn the lesson that Janey is not typical, and that I can't always follow typical kid rules with her.  You would really think I'd know that by now.  But I was feeling angry and upset over the seat belt, and I didn't feel like "rewarding" her for bad behavior.  What I wasn't keeping in mind is Janey doesn't think that way.  She doesn't do things to please me, and as a converse, she doesn't do things to make me angry.  She doesn't manipulate, or at least not in that complex a way, I don't think.  She certainly wasn't thinking "I'll be bad with my seatbelt for a few days, so I can get Mama to do anything to keep me happy, and then I'll score some good tunes and snacks" She isn't thinking that way.  I have to, at this point, do what works, without worrying about whether it's Parents Magazine approved, because Janey isn't Parents Magazine approved.  She doesn't follow the rules, so I am sometimes forced not to, either.  I need to be able to drive without fear, and so I will do what it takes.

And in case this way doesn't keep working, I have to thank my great friends, Michelle and Julie, both of whom are sending me different kinds of seat belt locks and harnesses!  I am the luckiest person on earth when it comes to friends, I truly think.  I am humming some Beatles in my head, getting by with a little help from my friends.  It seems appropriate.  At times when I am just plain overwhelmed, when I can't even think straight from stress, my friends have always helped me get by.

So, I'm preparing for today's drive.  We'll listen to some old time gospel and eat ourselves silly on unsuitable snacks, and we'll get by.

Car Trouble

The half hour car drive to and from Janey's school has usually been a good time for us.  We listen to music,  I talk, Janey sometimes talks, we just relax.  However, the last few days have been awful.

It started after school on Monday.  Janey wanted her shoes off, and took them off, which was fine.  But then she said "I want to snuggle on Mama's bed", one of her most common requests, but one she doesn't usually make in the car, in the middle of traffic.  I said "We will when we get home.  We can't snuggle in the car"  From what I can figure, Janey took that to mean we should get out of the car that second, so we could have our snuggle.  This was at the worst point in my drive, where I am in the middle of 4 lanes, two going the other way and one to the right of me going my way, about to turn into a very complicated intersection of 5 major roads, at which I have to get to the left and then across 4 lanes to get to the far right.  It's taken years to get to the point where I'm not panicked every day about it.  So at this point, Janey wanted her shoes back on.  They are shoes which take two hands to get on.  I was stopped at the light, but I still couldn't do it.  Janey was getting hugely upset, screaming and tossing the shoes.  I made a dumb move and tossed the shoes onto the floor of the passenger's front side, where she couldn't get them.  So she did the obvious counter-move, and took off her seatbelt to try to get them.  I screamed at her to put it back on, knowing she couldn't do that.  I had no way on earth of pulling over where I was, or for a bit.  This is city driving.  Luckily, she listened when I said to sit back in her seat---I had visions of her trying to take control of the wheel.  I pulled over as soon as I could, put her shoes on and her seatbelt on, and thankfully, made it home alive.

Fine.  But yesterday, both going to school and coming home, Janey once again took off her seatbelt.  Yesterday morning, it was because I'd committed the crime of not replaying the song she liked for the 5th time, so she decided to come up front and take care of that herself.  Again, me screaming at her to sit back, waiting until I got to a safe place to pull over, putting back on the seatbelt, blah, blah, blah.  I spent the rest of the ride talking to her dramatically about not taking off our seat belts, with lots of talk of "TERRIBLE car accidents" and "Janey getting EXTRA hurt", which was probably not useful for her but I was in a state.  Coming home, I had her go over with me over and over what we NEVER do in the car, and she faithfully repeated we NEVER take off our seatbelts, and that is TOO DANGEROUS, and all.  And about 5 minutes into the drive, she took it off.  She had the courtesy to be startled and try to put it back on when I yelled, but the damage was done.  Again, look for a safe pulling over spot (of which there are extremely few on our drive), pull over, put it back on, lecture, etc.

Lots of issues come up here.  I have no idea how to deal with this.  Janey doesn't truly care if I yell, she doesn't get punishments, she doesn't care about rewards.  She has next to no impulse control.  She wants what she wants, when she wants it.  And she is getting bigger.  I can see a day coming, hopefully not for a few more years, when it will be too dangerous for me to drive her alone, or anyone to drive her alone, and that will put even more limits on our life.  I am probably projecting too much, but it is scary.  I have no idea how I will deal with a Janey as big as I am.  And in the near term, I have to figure out a way to keep the seat belt on.  I will see if there are locks, although I admit it scares and bothers me a little to think of her locked in a restraint in the car.  Is that safe?  I will continue my ineffective lecturing and taking away of treats and videos, both of which I did the last few nights although I am quite certain Janey made no real connection to the car, although she could recite when I asked what she had done that was naughty.  She can recite anything.   That doesn't mean she gets it, or it will come into any play when she is again faced with the situation.  I'm dreading today's drives.

How do I react to hitting?

Lately, Janey has been hitting me.  I don't think she hits anyone else, but when she's angry or frustrated or told to wait for something, she's lashing out by pounding on me.  She doesn't hit hard enough to hurt me yet, but obviously I don't want this behavior to continue until she can hurt me.

I did a quick search today for autism and hitting.  I was a little underwhelmed with what I found.  Almost all the "expert" advice I could find seemed to be pretty useless.  Much of it dealt with trying to understand the underlying reasons for the hitting.  I think I know the reasons---it's hard for Janey to talk, she gets easily upset, she sees me as what is standing in the way of her getting exactly what she wants when she wants it, so she hits me.  The advice on how to deal with the hitting all seemed designed to keep parents from hitting back.  I strongly don't believe in hitting back.  I am not about to do that.  It doesn't teach kids not to hit to hit them.  The alternatives they gave were not ones that work---time out, calm voices saying "we don't hit", giving something alternative to hit, ignoring the hitting.  They are safe alternatives, but they don't stop the hitting.

My view is that I need to do something about the hitting that does two things---it stops the hitting in its tracks and  discourages hitting in the future, and it's a natural response---one that I can do every time.  I don't think Janey has the self-awareness or forward planning to be think through not hitting in any kind of complicated way. I need to STOP the hitting, to prevent it from getting worse, to keep it from becoming a habit.

To stop the hitting, I need to do something Janey doesn't like when she hits.  She doesn't like loud, sudden sounds.  So I am trying looking her directly in the eyes and saying very loudly, almost yelling "DON'T HIT ME!"  Then, I walk away.  I don't give her what she wants, or any more attention until she asks me a way that doesn't involve hitting.  Of course, I still need to be watching her, as I always need to be watching her.  This works for me.  It's a deterrent, it's honest, it expresses my feelings, it doesn't involve any hitting back, it doesn't give her what she wants for doing something negative.

I am mixed about making Janey say she is sorry.  It's pretty fake---she isn't sorry, I don't think, except sorry that she didn't get what she wanted.  But on the other hand, we need to learn to say things that society demands.  We teach Janey to say "Hi!"  We all say "How are you?" when we might not care how the person is.  So we can learn to say "sorry" as a word that is used after you do something mean, even if the emotion isn't all there.  I tend to wait a little bit, until we both aren't as angry, and then ask Janey to tell me she's sorry and with a lot of prompting, she usually does.

In this case, I believe in treating Janey much as I treated her brothers.  When something like hitting is involved, it's important to deal with it clearly.  Long talks about why it happened, long calm discussions---they just don't work.  Kids need the clear message that hurting people is not acceptable.  Recent events back that up.  So far, it seems to be working with Janey. We'll see how it all plays out, like with everything else to do with her.