A Little Beyond Happy

Janey's wonderful weekend last weekend has been followed by what often follows some of her very best times---a bit of what I can for the lack of a better term "mania".  I know it's not classic mania, probably, and I know that is a loaded term and that it has a clinical meaning and that using it says something specific....but that is a shorthand term I've come to use in my mind for how Janey has been this week.

It's been milder than in the past, as her unhappy periods tend to now be also.  In the past, she often would sleep extremely little during these periods, going to bed very late and waking very early.  We haven't seen that---she seems to be in a teenager style sleep mode a little young, and it's hard to wake her up for school although she goes to bed quite early.  But it's there, and it can be quite something to deal with.

So what does she do when she's "manic" (and I will just call it manic without quotations from here on in!)?  She repeats phrases, over and over and over, far beyond the typical delayed echolalia.  Last night, it was "Okay, all right, I've learned my lesson already!".  Over and over, in the exact same tone, probably 500 times.  I think it might be a phrase from a movie she's watching on Netflix a lot, "Home", or it might be from an episode of a new Scooby Do series on there also, just based on tone of voice.  She eats, huge amounts.  After school yesterday she ate a whole container of feta cheese, a full jar of salsa, a good amount of frozen yogurt and some cookies, and then ate a ton of dinner---homemade chicken nuggets, and still was asking for food at bedtime.  And she laughs---a laugh that is sort of like a laugh track, unvarying and not terribly related to anything going on.  The laugh can turn into almost a shriek, especially out in public.  Sometimes it sounds close to a scream, and it takes looking at her for a minute to figure out it isn't.

One of the toughest things she does when manic is be a little free with her teeth.  It's not biting, but it's pushing her teeth into me, in a way that's hard to explain.  It can hurt, and it's scarily close to a bite.  Last night she also started hugging me in a way that turned into elbowing me.  I don't think she realizes she is doing these things, and telling her to stop and backing away doesn't seem to change much.  She goes right back to doing it as soon as she can, laughing at whatever I say in trying to stop her.  

Usually these manic periods don't last long.  I'm glad they don't, although with their lessened intensity, they are easier to take than they used to be.  But they still make me kind of sad for Janey.  It's like even feeling happy and good turns into something else for her.  It feels like playing a happy song and having it get stuck, repeating the same happy laughter-filled phrase until it loses all meaning and is like a trap.  And the mania seems to often be followed by a plunge into screaming and sadness, from one kind of intensity to another.  I am crossing my fingers and hoping very much that this time, that cycle is broken and she can go back to the amazing relaxed happiness of last week.  Please.

Another sleepless night, through various filters...

The facts---Janey again had a sleepless night.  She was up from 11 pm to 5 am.  I'm a little slaphappy.  Here's a few takes on the night....

The completely supportive of my autistic daughter take---

Janey is communicating to me that she has decided to be nocturnal.  I celebrate and support her in this choice!  We will rearrange our schedules to accommodate her.  Tony will probably have to quit his job, and I'll sleep all day and stay up all night.  She also has indicated by putting on her shoes in the night and trying to unlock the doors to outside that she wants to go someplace during her wakeful nights.  We will put all our resources into figuring out where it is she desires to go, and will of course take her there.  It's wonderful to have her communicating all this to us!

The completely self-centered mother take---

I can't take this much longer!  Why is Janey doing this to me?  Why am I being tortured?  I have to find a way to make her sleep so I don't have to go through this any more!  And now, I can't even close my eyes for a second as she is constantly trying to "elope" out the door?  What fresh hell is this?

The scientific approach---

I am going to analyze the last few days and attempt to form a theory of Janey's sleeplessness.  Is she consuming something with caffeine?  Has her evening routine been disrupted?  Could she be experiencing pre-puberty hormonal changes?  I will try changing a few variables and observe the results.  With careful work, we should have this figured in a year or two.

The sleep-addled mind approach---

Wahhh?  Awake again?  Janey, please go back to sleep.  We aren't eating right now.  What?  What's going on?  Janey, take off your shoes.  Stop trying to open the door.  Tony, why don't you go upstairs to sleep so only one of us has to stay awake.  (3 hours later)  William, please wake up and go get your father.  I can't stay awake any longer and I can't leave Janey for a second.  Oh, hi, Tony.  Thanks for taking over....It's a big...zzzzzzzzzzzzzzzzzz.

The tough love approach---

Janey, you are going to get in that bed right now and close your eyes and sleep.  I'm not putting up with any more of this foolishness.  You aren't eating anything, you aren't watching videos, you aren't listening to any music.  You are SLEEPING!  Don't you dare get off that bed!  Don't you dare try to open that door!  You get back in bed!  (inner despair on realizing that Janey could care less if I sound angry and firm, because she doesn't care about pleasing me and knows there really isn't any punishment that works for her, then tiredness takes over and I go right back to the non-working rant)  You darn well better listen to me, young lady!

The hybrid approach---

Take a little of each above.  Mix them together in random form.  Hope against hope something works.  Realize nothing is working.  Wish that there was some magical new way to handle this.  Realize there isn't.  Spend the day in a half-awake daze.  Have hope tonight will be better, as hope springs eternal.

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.