Except for sleep...

 When people ask us lately how things are going for Janey, we usually answer that things are going quite well, except for sleep.  That's a big "except for"!

When Janey was younger, sleep was one of her lesser issues.  She actually slept pretty well.  There would be a tough night (or what we thought back then was a tough night) now and then, and once in a long while a very tough, almost no sleep night, but for the most part, she slept fairly normally.  This changed probably three or four years ago.

Now, it's a fairly common event for Janey to not sleep at all.  All night, not a wink.  No moments of drowsing off, no hour of restless sleep, no nothing.  Just no sleep.

It's also quite common for Janey to sleep amazingly little for nights on end.  A recent weekend, she slept 5 hours over the course of three nights.  

On the other end of things, sometimes Janey sleeps for a very long time---12 or 13 hours.  This isn't always after a sleepless night, as you'd think, but during a whole series of nights when her sleep is better.  Often there will be a night of normal sleep, a long night of sleep and then another night of normal sleep---and then...usually the sleepless nights start again.  But even that pattern isn't a regular pattern. Often, there is no pattern at all.

There's also little pattern to how Janey does after not sleeping.  Sometimes we get reports from school that she's very sleepy, and even that they had to let her sleep a lot of the day.  Or if she's home, we see that---times when she's just going to sleep all day even though we don't want her to, because you would think it would lead to another sleepless night.  But it doesn't always---sometimes she sleeps all day and then all night.  Other times, she is perfectly fine after not sleeping---as lively and happy as the day is long, and it's pretty long for us as parents, those days.

As you can see, there is little consistency to Janey's sleep.  This is hard on us, and I'm sure even harder on her.  I can't imagine how it feels to just not be tired at a time when you know people want to sleep, and even more how it would be if there isn't much you can do to entertain yourself

When Janey doesn't sleep, either Tony or I don't sleep, or we try not to.  Sometimes it's impossible not to drift off for a minute, and usually, Janey is okay when we do that.  She is not an eloper---she never tries to leave the house.  She usually spends her long awake nights playing with her devises, watching the same videos over and over, including the dreaded Finger Family, the video that must have been designed as torture for parents.  The biggest problem is when she decides to have a snack. Chips wind up all over the house, stepped on into little pieces, ice cream is left out and melts onto her bed, soda is spilled all over the floor. 

After years of not getting her period for some reason we (and doctors) never figured out, Janey seems to be getting it more regularly now, and I'm sure those cycles have a part in the sleeping and not sleeping, although we can't quite match them up with any part of a cycle.  Another factor is what Janey eats.  I've often talked about how chocolate can keep her up for days, and most everyone knows not to give her chocolate.  However, Tony and I are probably to blame for one recent awful stretch of sleepless nights, because we let her have regular coffee for a few days VERY first thing in the morning, thinking that would be okay.  She loves coffee---we all love coffee---and she is 17, certainly old enough to have coffee with the rest of us.  But from now on, she will have her own "special" coffee, decaf.

I don't see the sleep problem getting better any time soon.  We have tried the medications her pediatrician has said are okay to try, and they make little difference.  We have tried long walks during the day in addition to making sure she gets a lot of other exercise, we have tried routines, we have tried strict bedtimes, we've tried most everything we can think of.  When Janey is determined not to sleep, she isn't going to sleep (and when she is determined TO sleep, she is going to sleep).  Luckily, since Tony has retired, we can usually get a nap during the day if we need to, trading off if Janey is home.  

From what I've heard from all of you out there, Janey's sleep issues are far from unique.  I wonder if this is a problem more with girls with autism than with boys, due to hormones or just the different nature of autism in girls?  Although I wish all of you could have a good night's sleep every night, it does often help thinking of others out there awake like we are, others who live for that first cup of (non-special, fully caffeinated) coffee.  All of us in this club we probably didn't intend to join but now are lifetime members of, the club of those who care for and love a girl or woman with autism---let's raise a cup of coffee to our perplexing, fascinating and often sleepless girls.

The hospital story continues

I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.

Monday morning, after a fairly sleepless night,  Tony went into work to try to get in a few hours.  Janey was restless, but not lashing out.  We had a lot of calls and visits.  The medical doctor assigned to her came in and talked tome.  She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do  one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me.  After that, both her regular psychiatrist and her pediatrician called.  Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it.  I was kind of surprised they both saw that about me.

My dear friends Maryellen and Fab both visited that day.  Maryellen stayed almost all day, which was a huge help.  Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey!  Later in the day, Janey's classroom teacher also came to visit.  She brought Janey a big bag of books and other things from the classroom that Janey especially likes.  We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug.  It is so good to see how much she loves her teachers and they love her.

When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey.  We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find.  She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then.  One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now.  We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)

Then----I went home.  I got a ride home with Maryellen, and got home about 4.  It felt hugely weird to be home.  It felt like I had been gone years, not just days.  I was bone tired, but not quite ready to sleep.  I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza.  I did some computer time.  By 8, I was so tired I wasn't even able to really function.  Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully.  But I felt wired, like I couldn't sleep.  I wound up taking some melatonin, some we had gotten for Janey which never worked for her.  It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.

Tony had a fairly good night with Janey.  She slept from 7 until 3 am, which is not even that early a wake time for her.  He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.

I got back to the room about 6:45.  The plan had been for Janey to have an MRI at 7, but we had heard nothing.  When we finally did, it was that the MRI had been delayed until noon.  That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am.  She spent the morning begging for food and drink.  It was a long morning, but she remained pretty calm.  The contrast to the events of the weekend was incredible.  As it so often does with Janey, her mood had simply changed.

Janey finally had the MRI about 2.  It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave.  They gave her oral sedation, which took extra long to take effect, and then an IV.  We went back to the room while she was under.  It felt very odd being in the room without Janey.  Finally, they brought her back around 6, but she still hasn't woken, as of 8:45.  They aren't concerned, as she is on a monitor and she had so much sedation.  I am only concerned how she will react when she wakes up.

So---I am caught up to the present!  Although the present is still filled with much uncertainly.  When talking to the social worker tonight, we found there is still no progress on the placement.  There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital.  As much as I want her home,  I don't like that idea.  We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help.  I don't want this whole ordeal to result in nothing.  I am glad Janey is calmer, but that is what Janey does---she cycles.  Although we all always hope her cycles stay good forever, all who know her know that is most unlikely.  And I don't ever, ever, ever want to come back here as we did on Friday.  So---we will see what the next few days hold.