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.

A drink and a song

Last night, we decided to live it up a little and get some dinner out---some Burger King.  We ordered just what we felt like, because we are like that, living large, you know.  And then we ate it in the scenic lovely parking lot of the mini mall the Burger King was at.  I told Tony as we ate that I knew when I married him he'd take me some special places, and a night like the one we were having certainly proved I was right.

Seriously, though, we enjoyed ourselves.  I was thinking how in some ways, I'm pretty suited to the lifestyle that life with Janey brings.  I am not much into getting dressed and going out, I wouldn't really call myself unsociable, but I'm probably low-sociable, and I am as happy eating in the car in a parking lot as I would be in a fancy restaurant overlooking the ocean, most of the time.  We had a nice meal, joking around and people-watching.

At one point, Janey asked for a drink of Tony's soda.  He had a big diet Coke (he is a diabetic).  We don't usually like Janey to have soda, but in the spirit of a carefree night, we gave it to her without a lot of thought, and she had a nice big draw of it.

When we got home, it was the time Janey usually goes to sleep, about 7:30, but she wasn't sleeping.  She finally did go down about 8:30, which was fine.  In another example of just how we roll, we all went to sleep at that time, which is I have to admit a fairly typical bedtime for us.  We are just not late night people.

At four in the morning, Tony woke me up to say Janey had been up almost all night and it was my turn to take over, so he could get a little sleep before work.  I was happy to, but not happy to hear about the sleepless night.  We've certainly had them at times, but not too often recently.  There's two types of them.  One is the upset, screaming up all night and the other is the cheerful but demanding up all night, and Janey was in the second mode.  Every time Tony drifted into a minute or two of shut-eye (we stay up when Janey's up, but the human body can only take so much not sleeping and we drift off for minutes here and there), Janey had a new request.  So he was not in a good way.

Janey switched over to requesting things from me.  She watched part of "Journey to Joke-a-lot", a Care Bears movie that I think was designed mostly for late night college parties where there might possibly be some non-sobriety going on, due to its many wild colorful scenes of roller coaster type rides going through bizarre landscapes.  Then she asked for another show on the "big TV", but I told her it was time to lie down, and if she couldn't sleep, she could use her iPad.  That was a mistake, as it turned out her iPad was out of charge.  That is something Janey doesn't get at all.  I think she thinks we just every now and then decide to take away the iPad, to show our dominance or something.  We've tried getting her to use it plugged in, but she immediately unplugs it.  So she was ready for a meltdown.

Grasping at straws, and cursing the caffeine in the diet coke, consumed after 12 noon, which we have to be reminded over and over and over results in her not sleeping, I asked her if she wanted me to sing her a song.  She said immediately "Yes!" which startled me, as she isn't usually a direct answerer and she generally isn't that into my singing.  I asked her what song, and she said "Angels we have heard on high!"  Another direct answer, and I knew what it really meant.  I pretended I didn't, and started to sing the carol, and she said "On the big computer!"

For some reason, Angels We Have Heard must always be played through iTunes on the computer, with the visualizer on.  I knew that from the start, and I dragged myself out of bed and put it on.  And we listened and watched, the unseasonable song and the mesmerizing colors and shapes.  We listened together to five versions of the song.  Janey danced next to me.  Some of the versions required me to clap along, which Janey let me know by clapping my hands for me to get me started.  We skipped version six, done by Neil Diamond, and went to version seven, a VeggieTales version, proving that Janey doesn't always have great taste in music.  We wiled away the very early morning hours, until it was time to get ready for school.

I thought, after I'd had a little rest, that like the parking lot dinner, that sometimes what Janey wants and needs is similar to what I'd want and need.  I love hearing many versions of a song, and getting into the light show the computer provides, and aside from not quite wanting to do it when I'd rather be sleeping, I'd enjoyed myself a lot with Janey, having a drink and a song with a friend.  My life today isn't exactly what I'd ever pictured, but whose life ever is?  Life is what happens while we're busy making other plans, to quote John Lennon.  Having a child like Janey isn't in most people's plans, but it's life, and like any life, it has its downs but it also has its nights of drink and song.

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.

Stir Crazy Hodgepodge

The big storm last Friday has resulted in no school of course that day, but also today and tomorrow.  That's created a 5 day weekend, and Janey is not pleased.  Snow days are not her favorite thing.  She likes being out of the house, and she seems to have an internal clock and calendar that doesn't like surprises.  She was happy enough a lot of today, but lost it hugely toward evening, which might have also been prompted by Tony having a doctor's appointment after work---she might have thought he was gone on a trip again.  She screamed for about 2 hours.  After about 75 minutes, I called her brother Freddy, who was playing video games in his man cave, and asked him to come help, which he did promptly and well.  He played with her and cheered her up, but only when he was there---after about 10 minutes, he had to go, and she reverted to screaming.  It is always hard when other people can make her happier than me, although I know at points like that it's just because I'm out of ideas and at my limit.  She cried for a while for Daddy when he got home too, but then cheered up when he cooked for her, and is now asleep.  Let's all hope I make it through tomorrow in one piece.

One of the reasons she wants Daddy home right when she expects him so much is that he cooks for her.  I cook, but I don't cook as well as Tony, and I'm not as good at short order cooking.  He cooks her what she wants for dinner every night.  That was making me think about this article I read about problems with diet and eating in autistic kids.  I don't think of Janey has having many food issues.  She eats a healthy diet, and she eats well when she eats.  But in some ways, she does have issues.  She very, very rarely will eat the school lunch, per the reports I get, but when I packed her a lunch, she ate that even less.  She doesn't like food that is not hot, or that is not freshly made.  She also doesn't like bland food at all.  Her food needs to have an edge to it---to be hot in spiciness or temperature, to have a sharp or unusual taste, most of the time. Here's a picture of her with her favorite treat...

It's a pickled vegetable salad that my parents find at a store in Maine.  It's basically assorted pickled veggies in a brine that tastes and smells like sauerkraut.  I can barely stand to look at it, but Janey will eat the whole jar if you let her.  It's loaded with vitamin A and C, and is probably one of the better snacks she could have, but it's odd.  You aren't going to find it as a classroom snack at school.  I sent in a lot of snacks for her to eat during the day because she won't eat the lunches, but the things she would like most, like that slaw, would be a bit hard to serve in a classroom and would probably gross out the other kids.  I worry sometimes about how she'd get by if she ever had to eat conventional meals only---if she ever went someplace overnight.  I wonder if we should try harder to get her to eat more "normal" meals.

We have never tried special diets with Janey.  I watch her closely to see how her moods relate to her eating, and as long as she DOES eat, I haven't many.  If she won't eat for a while for some reason, she gets very upset, but I haven't seen a behavioral connection to what she eats, with one exception---caffeine.  She is EXTREMELY sensitive to caffeine.  Not that we are giving her coffee or caffeinated soda (although she sneaks both if she ever gets a chance) but she is sensitive even to the caffeine in chocolate.  If she has any chocolate at all past around noon, it's extremely hard to get her to sleep that night.  She goes into her hyper, manic mood.  This happens with even a small amount of chocolate, like a few M&Ms.  I can see how other foods that other autistic children might be sensitive to could bother them in very small amounts, based on this.

To make this a true hodgepodge, here's a picture of Janey out in the snow.  We couldn't stay out long, as she would not leave on her mittens.  She wants to touch the snow, and cold hands don't seem to bother her, but I didn't want frostbite to set in!  She had a great time the short time she was out, though.

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.