Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

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.

Middle of the Night Thoughts

No, Janey's not awake.  It's just me awake.  I've been having a lot of trouble sleeping the past few nights.  Thoughts and worries swirl around in my mind and keep me up.

Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day.  Today, the death number was 252----the highest yet.  Somehow, that really hit me.  I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day?  It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts.  It feels in this case like a terror happening off camera.  We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number.  It's terrifying.

And of course, I fear most of all that it will hit us.  How could either Tony or I do the job of being Janey's parent without the other?  Or what if Janey got sick? Or the boys?

We don't go anyplace.  Not at all.  Tony takes Janey for a car ride to no-where a few times a day.  We play with her in the driveway.  She hasn't set foot outside our house, driveway or car for over a month.  She would not wear a mask.  She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst.  She touches everything---when I take her for a walk, she runs her hands along walls and fences.  It is not safe for her to go out.  Even outdoor places in this crowded state are filled with people, many not wearing masks.  So we stay home.

Janey is still doing remarkably well being at home.  She seems to be thriving.  She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway.  Every day is quite similar, but she doesn't seem to mind.  It's a low stress life for her.  She doesn't really understand at all why we are home, and that is probably good.

A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists.  Janey tolerates this, and even seems to enjoy it for a few minutes at a time.  However, starting next week it's going to be every day, for 2 hours.  I have very mixed feelings about this.  I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework.  They need direct teaching.  But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time.  It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing.  But it has to do with Janey just not quite getting it.  She gets school.  She's been going to school for a long time.  She knows how that works.  But someone on a screen talking to her and listening to her and expecting her to respond?  I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know.  It's fun for a few minutes, but not for extended periods.

However, it's not like there are really any other options.  School can't be held in person right now, and everyone is doing the best they can with that.  It's not easy for anyone.  In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry.  Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.

What really keeps me up at night is how this is all going to play out long time.  People seem more divided than ever.  Instead of this pulling us all together, it seems to be pulling people apart.  That's crazy to me.  It's not a matter of politics here.  A virus has no politics.  But fear can cause divisions, anger, irrationality.  I can handle that.  But how I fear for Janey, and for all those out there who will always depend on others.  She needs a world that is secure enough to leave people feeling they can help others.  She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected.  I don't think the extremes on either side of any political rift really understand that.  She literally needs someone to watch over her, and she always will.  And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died.  God help us all.

The Summer Without Sleep

It's about 11:30 pm now.  Janey is awake, wide awake, watching TV.  Last night, she slept not at all.  This used to be an unusual, shocking thing, that she could go totally without sleep all night now.  It's not any more.  In time since school ended for the year, there's been about six nights without sleep, without ANY sleep.  There was one last Thursday, just five days before last night's non-sleep night.  I hope there's some sleep tonight.  It seems like there would have to be.  But maybe not.

What is going on?  For most of Janey's life, sleep has been one of her lesser issues.  There were always occasional insomnia nights, but not a huge amount, and very rarely ones with no sleep.  Something changed recently.

I don't have a lot of theories.  One of the few I have is that it's just her age.  She is almost 15, and that is an age you start staying up later.  I've read that it's theorized it's biologically hard-wired, because it gives teenagers a time to relate without older or younger people awake, and that leads, indirectly, to the human race continuing.  Maybe Janey is feeling that draw, to be up at night when others aren't.  But while most teenagers might realize not to take it too far, to eventually sleep, Janey doesn't.  She just stays awake.  And she doesn't get the desired alone time.  We can't leave her alone.  If she's awake, we are awake, or trying hard to be awake.

If Tony hadn't retired early, if he had to get up for work each day...well, we'd have dealt with it, because what else can you do?  But even with him home, it's very, very hard.  After missing a night's sleep, even with the two of us trading off, you aren't yourself.  It's hard to explain unless you've had a period of being chronically sleep-deprived.  It feels like you aren't fully alive.  It feels like everything is happening in a daze, a mist.  You can't do anything that requires thought or effort.  It's like your mind tries to half sleep even when you are awake.

Janey started summer school this week.  I don't know if she slept at school today. We have always sent her to school even when she doesn't sleep, as unlike Tony or me, she seems little affected the day after not sleeping.  Even after the day after becomes the night after, she just doesn't seem sleepy.  She often stays up quite late the night after not sleeping at all.

We plan on talking to Janey's psychiatrist soon about this not sleeping.  Right now, we do give her melatonin, as we have for years, for all the good it does.  When I take melatonin, which I do now and then, I fall asleep always in about half an hour.  I don't know if it does a thing for Janey any more.  Her pediatrician has told us it's okay to give her Benadryl on the very worst insomnia nights, but that also now seems to have no effect.  If I ever take Benedryl, I'm knocked out like a light.  So I don't think any other sleep medicine is going to work.  The urge to be awake on the non-sleep nights is stronger than most anything.

It's gotten so we can tell ahead of time when Janey's not going to sleep a certain night.  The main giveaway seems to be her attention span getting extremely short.  On evenings before she sleeps, she changes YouTube videos or songs absolutely constantly, after about 10 seconds.  She watches the same pieces of video over and over and over, separated by little pieces of a different video.  She paces while she does this, and often does her OCD routines---straightening out the remotes on the living room table, turning on and off lights or the AC, doing spot checks to make sure we aren't crossing our legs or arms---the routines we've seen for many a year, but in a more intense way than usual.

The non-sleeping probably affects me almost out of proportion.  When I don't sleep, I feel hopeless and isolated.  It can feel, in the middle of a long, sleepless night, like we are on a little island or planet, completely alone.  It can feel like morning will never actually arrive.  It can seem like Janey will never sleep again, that this will go on forever and ever and ever.  I know my mind plays tricks on me when I don't sleep.  It can make my outlook pretty bleak.

And now it's close to midnight.  Janey is awake, watching a video she has watched many times tonight, one where a woman spells the names of animals after pronouncing their names in odd ways---KAN-grew for Kangaroo.  That, and the one where Mr. Harlow opens surprise eggs, and the three cats called Cutians, and Coco-Melon videos, all the videos on heavy repeat during sleepless nights---well, if I never hear any of them again, that would just be fine.  Let's hope for a few hours sleep tonight, and let's hope the summer someday becomes a sleepy fall.

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.

More talking, less sleeping

Last week was winter vacation week here in Boston, the most dreaded vacation of all, at least for our family.  It comes a time of year when there is nothing you can do outside, when the weather is dreary, when Facebook is full of posts from people going away for vacation and if you are not one of those people, and you are dealing with a teenage autistic girl who doesn't care for a change in routine....it's no vacation.

An odd thing we have noticed over the years is that by the end of most any vacation week, when Janey is home with us completely, she talks more. I don't know why this is.  I know she's exposed to more language at school than at home, and she gets a lot of one on one attention there.  But maybe it's having two or more adults around her at all times, trying to keep her happy, or maybe she relaxes away from school like we all do a little, or who knows what.  But this vacation was no exception.

Over the course of a few days toward the end of vacation week, Janey said all kinds of things that surprised and delighted us.  One example---she was looking at my collection of postcards on the fridge.  I pointed to one she was looking at and said "What's on that one?" and she correctly said "a fox".  I then pointed to a cat and a horse, which she also named.  I stopped, as to not quiz her for too long, but she kept going, pointing to another and saying "That is a bear!" (correctly) and then to one with two cats, saying "Those are some cats!"  Perfect grammar, and spontaneous talking!

Later that day, her brother Freddy called.  Usually a perfect way to have Janey be totally silent is to have someone on the other end of the phone that would like to hear her talk.  But this time, she was actually answering Freddy's questions!  She recited her address and phone number, she responded to him singing a song she likes, and then, when I asked her "Do you know where Freddy is?" she said "Freddy is at college!"  Freddy and I were both taken aback.  We've told her that, many many times, but I think that's the first time she's ever said it.  It made me really happy, partly because I always worry that she just thinks her brothers sometimes disappear into no-where.  It was good knowing she knows where he is.

The next day, William called.  Janey wasn't quite as chatty that day, but late in the call, just for fun, I said "Where is William right now? and Janey said, right away, "William is in Chicago!"  We were on Facetime, and I tell you, William's face reflected my own in showing huge shock at that answer.  I KNOW she's never said Chicago before, and I truly didn't think she had any idea where William was.  We were all so happy.

In the middle of those two days of talking, there was, as there always is, a night. I think I'm starting to be able to sense as soon as bedtime comes on nights like that one that something is up.  Janey was just not tired.  We followed our bedtime routine, but she kept jumping up, asking for things, turning on the TV, getting food from the fridge...long past her usual bedtime of 7 or so.  At 10, she was still awake.  At midnight, she was still awake.  At 4 in the morning, she was still awake.  You get the picture.  She slept not a wink all night.

You would think that she'd be tired the next day.  But she wasn't.  She was peppy and lively and wide awake all day.  I figured at least she'd go to sleep early, or at the very least at her regular time.  But no.  She finally went to bed that next night at 9 pm.  She had woken the day before at 6 am.  So she was up for 39 hours straight.

I've written before how Janey once in a while just skips a night's sleep like that.  I think this time was the record time awake, but it's not that uncommon that she's cheery the day after a night without sleep.  It's like her body and mind simply don't need sleep some (thankfully fairly rare) nights.  However, Tony and I do.  We spelled each other, but still, people in their mid-50s don't function with that kind of fractured sleep too well.

I do think there's a connection between the increased talking and the lack of sleep.  Janey's brain is a fascinating thing.  It seems like it sometimes goes into overdrive, into a mode where all the knowledge she has stored is far more accessible than usual.  I can see why you wouldn't want to sleep, if that didn't happen to you that often.  You'd want to stay awake, and maybe your mind would keep you awake.

Sometimes it seems like a huge part of Janey's autism is a brain that shifts between levels of alertness, levels of operating speed and ease, more drastically than most brains.  Any report ever written about Janey mentions that what she can do depends very much on the day.  Some days, she is barely responsive.  Other days, she is so engaged that it's startling.

If Janey ever got to the point where we could both sleep while she's awake...well, that would be great.  I don't think the occasional sleepless nights are going away, and I accept that.  But boy, I don't think even a week later now, Tony and I are much recovered.  Now for some more coffee...

The Mystery of the No Sleep Nights

My mother is a huge fan of mystery series books, like the Nancy Drew or the Judy Bolton ones.  The title pays homage to that, and to the fact sometimes life with Janey can feel like a long series of mysteries.  One of the biggest ones is why sometimes Janey simply skips a full night of sleep.

Overall, sleep is not one of the biggest issues we usually face with Janey, at least not compared to a lot of kids with autism. (knocking on wood here, of course!)  She goes to bed fairly early, usually somewhere around 7 or 7:30, and gets up early, about 6.  While she's asleep, she barely moves, and we can usually be as loud as we want to around our small house without waking her.

However, once in a while, probably 10 times in her life, Janey has just plain skipped a night of sleep.  When this happens, she doesn't sleep at all.  Not one wink.  And almost always, the next day she isn't particularly sleepy.  It's like for that one night, she just didn't need to sleep.

I don't have seven clues, but I have a few!

This happened most recently Thanksgiving night.  Janey was not in a good mood for Thanksgiving.  November is often one of her tougher months, and she'd had a fairly rough week.  There was a lot of screaming that day, so we were looking forward to a night's break.  But she just never went to sleep.  Tony stayed up with her until about midnight, then I took over.  The funny thing was that she was much more cheerful during her normal sleeping hours than she was the day before or the day after.  Although she wasn't sleeping, it was like she was in a different mode than regular daytime.  She was up until 5 pm on Black Friday, then went to sleep and slept all night.

What do we do all night on a no sleep night?  Mainly watch videos.  I could insist that we turn off the TV, but I know that would do no good.  Believe me, I've tried, and believe me also, once you get a ways into a no sleeping night, you do whatever you have to do to get through the night.  When Janey is watching videos, I stay right near her on the couch and struggle to keep my eyes open, and change videos when she needs me to.  Sometimes she asks for a ride or a shower, but in a mild way.  She seems to know what she can do in the middle of the night and what she can't do.

There isn't much of a pattern to these no sleep nights.  Sometimes they happen when she's in a good mood, sometimes bad.  Sometimes she seems manic, sometimes there is no sign at all she won't sleep.  Sometimes we realize she's had chocolate after noontime, which disrupts her sleep badly.  Sometimes she has eaten nothing out of the ordinary.

As I often do lately when trying to figure Janey out, I think of what any teenage girl of 14 would be doing.  Although I think my sleep at that age was pretty regular, of course sometimes I stayed up late.  This was usually when spending the night at a friend's house.  I know there were lots of nights that I was up until 3 or 4 am laughing hysterically with friends, probably discussing who had a crush on who for hours on end.  Maybe an occasional late night or no sleep night is just something Janey needs, to break up the routine a bit.

Another theory I have is that the no sleep happens when Janey's brain is working on processing something new.  Lately, we've noticed her talking is on an upswing.  We've been hearing some longer, more complete sentences---for example, instead of saying "Go to the store!"  she might say something like "I want to go for a car ride to the store" or "I want to get salami at the store"  This isn't all the time; it's still pretty rare, but it's nice to hear.  She has also been reversing pronouns a bit less.  One night she wanted a shower, and I said "I'll give you a shower in a minute" and she said "You give me a shower in a minute"  which surprised me quite a bit.  Maybe when her brain is making new connections, it's hard to sleep.

When the nights happen rarely, as they do, we can manage it, especially now that Tony is retired.  But if they ever started happening on a regular basis, like more than once a week or even once a month, it would be very hard to take.  Janey needs to be watched at all times.  I think about parents who have kids with much more severe sleep issues than Janey, and my heart goes out to them.  It's a case where I have to hold myself back from saying what I myself don't like to hear---"I don't know how you do it"---because I do know how you do it.  You do what you have to do.  You scrape by.  You drink a lot of coffee and take naps when you have a moment's respite.  You live with a sleep deficit.  But I know it's not easy.  As I write this at 8 pm, Janey is fast asleep, and I hope everyone reading this gets a good night's sleep---if not tonight, some night soon!

Snow Days

We had a fairly good-sized snowstorm yesterday, which resulted in a snow day, and another snow day today to finish the cleanup.  As many of you are all too aware, unexpected days off are not a big favorite of Janey and others like her.  However, the past few days haven't been bad at all.  They have been more...interesting.  

Tony was home yesterday too, as his office was closed.  That was great.  Janey had had a tough week, and I was prepared for a day with lots of screaming and tears, but I don't think I saw either one once yesterday.  She was happy and a little bit manic.  She ate a huge amount, and ran around the house a lot, and danced a ton with Tony.  At one point, she suddenly said "Shut up!" in a loud, jovial voice.  She then proceeded to pace back and forth and say "SHUT UP!" for about an hour.  I'm not sure where she picked that up, but she enjoyed it a huge amount, and so we just went with it.  She asked a lot for car rides, but did well when we told her that just wasn't possible.  I kept having her look out the window, although I don't think she quite got why the blizzard conditions were standing in the way of a car ride.  

Janey is usually fast asleep by 7 or 7:30.  She's big on early to bed and early to rise, like her father.  So when she was still awake at 8, we were a bit surprised.  We took turns lying down with her.  She stayed on the bed, playing off and on with her iPad (which we let her take to bed, as it generally doesn't interfere at all with her sleep) and singing and asking for food (which we didn't give her, as she'd had plenty during the day)  I was with her until 10:30.  She was still wide awake.  Tony took over and I slept until 12:30.  I relieved Tony---Janey still wide awake.  I lay down with her and she looked at me with a hugely happy face, just smiling and staring at me.  My eyes kept closing, but when they opened, there she was, watching me.  I last saw her awake at 1:30 am.  At that point, either I didn't wake up again or she finally went to sleep.

We have a few theories about the sleepless night.  She didn't go outside at all, all day, and maybe the lack of daylight did something.  Also, because she couldn't go for a car ride, a few times Tony took her upstairs to where his brother lives, and she had "butter", which is what she calls Nutella.  Chocolate is often the culprit when she doesn't sleep, although lately that is usually only if it's close to bedtime, which it wasn't.  My main theory, though, is just that she was in one of the moods where she's hyper-alert, and sleeping is hard when you are like that.

Today, she was sleepy.  She woke late and then took a nap.  Tony worked a half day.  She was still peppy, but not quite as much as yesterday, and there were a few more tears and screams.

We noticed, both days, something we often see when Janey is home with both of us for a day or two.  Her talking increased.  On days she goes to school, we hear very little talking in the afternoon or evening.  I think she's tired out, and also, perhaps associates talking with schoolwork, and decides to give herself a break at home.  It's fine, but it's nice hearing more talking.

An illustration for "The Ten O'Clock Scholar

Yesterday, when I was attempting to read her a book and she wasn't interested, I quickly before closing the book asked her to point to a few things in the pictures.  With the air of wanting to just make me happy so she could move on, she quickly and with complete ease pointed to three things---an owl, a blackboard and a bell tower.  All of those are words she's never said, to my knowledge, and words that I'd really have no way of knowing she knew.  I've done quick pointing tests with her like that enough to realize she has knowledge of the meanings of many, many words she never uses or lets on she knows.  I wish there was a way she could use these words, to enrich her ability to actually communicate, but I just don't really know how to help her with that.

Today, we were playing a game we often play, where I recite the start of a nursery rhyme and she finishes, or finishes some of it and waits for me to say the next line, and we go back and forth.  I love having an iPhone, because I can quickly grab a video, which I did.  I posted it on the Facebook companion page to this blog, if you are interested.  It's another example of things Janey knows you would not know she knows.  I would say she knows hundreds of nursery rhymes.  Of course, among the ones I started the film is one I don't think she did know ("A ten o'clock scholar"), but that is a rare thing!  If I've read one to her two or three times, it's in her head someplace, memorized.

So---I hope tonight is a better sleeping night.  I hope Janey continues the happier mood for the weekend.  And I certainly hope the storm predicted for Sunday night doesn't happen, so Monday is not another snow day!

The moments of clarity

Yesterday, I got a call from a teacher at Janey's school.  She is also a friend of mine, and has known Janey since she was born.  She will be Janey's teacher next year.  She told me a story that stunned us both.  Janey was in the auditorium of the school, with an aide that the teacher hadn't seen before.  Janey walked up to the teacher and said, in the voice she described and I recognized from the description as one she almost never uses, the voice of a typical girl her age, in a crystal clear tone "Is Maggie coming to school?"  Well, that's amazing in quite a few ways.  Maggie is the teacher's daughter.  She doesn't go to Janey's school.  Janey knows her because she has been to her house to play with her---she's known Maggie since Maggie was born, but the last time she saw her, from what either of us could figure, was three years ago.  So Janey did many things she rarely, rarely does.  She associated the teacher with Maggie, she sought the teacher out, she spoke clearly and meaningfully, she asked a question, she showed a memory of something that happened a long time ago, she expressed an interest in seeing another child, and she asked it completely appropriately, like any other 8 year old would.  Needless to say, I was astonished and thrilled.  The teacher said she was very glad there were witnesses, or she would have doubted it ever happened, and I get that completely.  There have been a few other times Janey has said things out of the blue like that, and I often, after it happens, think "Did that just happen?  Did she just say that?"  If you knew Janey, you'd know how amazing something like this is.

And what does it mean?  We talked about that a little.  What Amy, the teacher, said, is that (and I might not be getting this phrase just right) it means "Assume total understanding".  Although it might not be the case, always assume Janey understands everything we say.  It is something I need to think about a lot.  I don't do that.  I am sure there are many, many times I've said things in front of Janey that she should not hear.  I think that's easy to do, because for the vast majority of the time, Janey shows absolutely no indication she is listening to conversations or that she has any understanding of what is being said.  But then, literally maybe once a year, she shows she does.

This ties in a little to Janey's recent sleep issues.  For those of you following the sleep nightmare this week, we broke the cycle hopefully a night ago.  We kept Janey up late, out of desperation, until 11 pm.  Of course if Janey has been determined to fall asleep, she would have.  But we encouraged the awakeness.  Finally, at 11, I lay down next to her to sleep.  I could tell Janey was tense.  She was resisting sleep with every part of her being.  I had a flash to how I feel when I've had bouts with insomnia, which has happened on and off my whole life.  I feel like I've forgotten how to sleep, like I'll never sleep again.  I lie there in terror that sleep will never, ever come.  It's a hugely scary feeling.  The only thing that works when I feel that way is to take the pressure away, to truly decide it doesn't matter if I sleep or not.  I can't fool myself---I have to really feel that way.  Usually, it takes it being a night where I know the next day is open, that it won't matter if I am tired or not.  I had an inkling Janey might be having that kind of anxiety.  So I said to her "You know, it's okay if you don't sleep.  You don't have to sleep.  You can stay awake.  Mama will be here with you whether you sleep or not.  Don't worry about it."  Janey looked at me with huge eyes, with what I took as amazement I was saying that.  And then, literally within a few seconds, she closed her eyes and went to sleep.  For eight hours.

There is so much to think about here.  It's easy, right now when Janey is fast asleep and I am not in the trenches with her, to say that I will always keep these lessons in mind---that I will always assume she is understanding me.  But then real life kicks in.  When you are on your 6th hour of not sleeping as Janey ravages the house or screams or laughs hysterically or begs over and over to go get ice cream at 3 am, it's not easy to keep that in mind.  Maybe it's impossible.  But as I've often said to the boys, and maybe I should say to Janey too, all I can ask is that you try.  All I can ask myself to do is try very hard to remember these lessons.

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.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

Nights from H-E-Double Hockey Sticks

Janey's sleep used to be one of the easier things with her. Lately, however, she has taken to getting tired about 6pm, and extremely cranky, and nothing we can do can really keep her from going to bed that early. Then she wakes, around 11 or 12, and is totally awake for hours. We are early to bed people, but not that early, and if we go to sleep about 9 or 10, we get about 2 hours of sleep before she's up. And she isn't just up, she's either crying her eyes out or laughing hysterically or singing at the top of her lungs or requesting things "I want ice cream" "I want chips" "I want carrots". Our house is way too small, and we just don't sleep. Last night was so terrible. She was up from 10 to about 2. I got more sleep than Tony, as I slept from about 2-7, but he went to sleep about 8 and got 2 hours then, then slept from 2-4 when he has to get up. I don't know how he drives an hour to work, and I don't know how I take care of Janey. I am like a zombie today. She on the other hand is perfectly happy. Luckily she is in a TV mood, or I would be unable to cope. But it will all start over, as she does need the normal amount of sleep. She will fall asleep in the car on the way to school, or fall asleep about 5 tonight, and it all starts over. I am at a loss about what to do. It is like torture to keep her awake when she wants to sleep, and when she wants to be awake, any wishes we have to the contrary are of no interest to her. I have such fears of Tony falling asleep at the wheel on 128.