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.

Communicating Pain

If I could make a wish and be able to have Janey freely and easily talk about one subject only, that subject would be pain.  I wish so much she could tell us when she is in pain, and where the pain is, and how bad it is.  Not being able to do so almost cost her her life, when her appendix burst, but pain far less critical to know about than that still is something I would very much like to be able to have her tell me about.

Yesterday, Janey said "Do you want a band-aid?  Do your legs hurt?"  That was about as clear as her pain talk gets---in her trademark Jeopardy style form of a question talking.  She has her period, something that has only happened a few times without medication bringing it on, and I was able to figure out that was most likely cramps she was feeling.  I'm glad she could tell me that much, but there was so much more I wished to talk to her about---to ask her how bad the cramps were, to see if the Motrin we gave her helped, to ask if anything else hurt.  Today she was just cranky all day, and we were pretty sure she was feeling cramps again, and gave her Motrin again, but we could have been way off.  Maybe she was just bored, or upset about something else.

I try to imagine how it would be to not be able to describe pain, or understand why I was feeling it.  I think especially about headaches.  I get those a lot, and I wonder if Janey does too.  I wonder if a lot of the days she's just off, just upset, her head is hurting, and she doesn't know how to tell us that.  If I ask her, she generally just repeats when I've said---I say "Does your head hurt?" and she says back "Does your head hurt!"  I wonder how often she's had a stubbed toe or a stomachache or a sore throat and we had no clue.  I think she thinks we know what she is thinking, and I so hope she doesn't think we just ignore the pain she's feeling.

Of course we have tried AAC apps to communicate about pain.  And like most everything else with them, we've had very little success.  Either she pushes them away, or she chooses the middle button of each screen every time.  Or she picks a word she likes the sound of and picks it over and over, mainly "Grampa".  She knows how to get to that word on every app we've tried, and that shows us she can manipulate the screens when she wants to, but she doesn't want to, or at least she isn't able to do it consistently.  

I work hard on giving Janey the words she needs to describe pain, but I worry about putting words in her mouth.  Yesterday I kept saying "You have cramps", but of course, I don't know for sure she did.  I'm working too on taking her temperature by mouth, to have another way to judge illness. We had a forehead thermometer, but I never trusted it to be accurate. She will now hold the thermometer under her mouth for a minute or so.  I also check her oxygen with a little home meter now and then, just to get her used to medical checks.

I read the other day about a teen with autism who had COVID, whose parents weren't allowed to stay in the hospital with him.  That is the nightmare to me---that sometime Janey will be not with Tony or me, will be sick, and will be unable to explain what is wrong or understand what is happening.  That's the kind of thing that keeps me up nights.  I've seen the mixed bag that is medical care for those like Janey. There are those that are great at helping her and listening to us, like her current pediatrician or the surgical team at Mass General.  And there are those who were not, like her old pediatrician or the ER at Mass General.  In this pandemic time, I hope you are all well, but most especially your loved ones with autism.  The world, even the medical world, doesn't always understand that not everyone can speak up and say what hurts.

The summer of the virus

I'm thinking of all of you this summer, especially those earlier on in the whole autism journey.  Every day, I picture how hard it would have been to have a summer like this one if Janey was still as unhappy as she was for many years, and if her behaviors in showing that unhappiness and pain were still as intense.  As it is, it's not totally easy, of course, as it isn't for anyone on Earth right now, but it's nothing like it could have been.

We chose not to "send" Janey to summer school.  I put send in quotations as summer school was going to be totally virtual, all Zoom meetings, for THREE hours a day.  It was a no-brainer to turn it down.  Zoom meetings quite simply don't work for Janey.  We tried our best during the school year, for the hour a day her class met.  At the best, she would sit still and watch the screen, and perhaps participate with a word or two during that hour.  At the worse, she would scream, cry, turn off the computer, close the screen, run away constantly and then be in a terrible mood for the rest of the day.  Either way, it wasn't in any way worth it.

I don't think Janey understood at all that her teachers and fellow students were at the other end of the meetings.  I think she saw it as a TV show or movie,one that for some reason we forced her to watch, one that sometimes strangely called out her name specifically and tried to get her to respond.  This wasn't the case with all the kids in her class.  Some of them participated eagerly, and almost all the other kids at least were more engaged than Janey.  That surprised me.  But as we all know, every kid with autism is different.  I did think there were more kids similar to Janey at her high school, but perhaps those kids just weren't participating at all.

One thing that struck me is that Janey has much less liking of repetition than the other kids like her seemed to.  Or at least she has less liking of repetition she hasn't herself chosen.  She will watch the same movie day after day after day (Toy Story 1-4 and Coco and The Emperor's New Groove, I'm talking to you!) but that's her choice, and she does move on with movies or music after a while.  She'll eventually get bored and cycle in something new.  But the Zoom meetings featured the same songs and videos day after day---greeting songs, days of the week or months of the year or seasons videos---and Janey was not interested. This got complicated by technical problems when the audio or video wouldn't work well.  I felt for her teachers very much.  They had not signed up to be virtual teachers or educational technologists.  They are hands on, great teachers, and they were being forced by circumstances to teach in a totally different way.  And it just didn't work for Janey.

A typical scene this summer, watching videos outdoors

So---the lack of school this summer feels like a huge relief, truly.  I have no idea what I'll do in the fall if schooling is still virtual.  I don't think Janey will be going to that kind of school if it is, one way or another.  We will have to explore our options.  I also just don't know what will play out if school requires masks all day, and 6 foot distancing.  I know that Janey would not be able to comply with that.  She will wear a mask for very short time frames, just to be able to go to the 7-11 and get ice cream or chips, but all day long---that will not work.  I worry especially about the bus---there is no way it would work there.  I worry about her getting COVID, about her teachers or bus drivers or paras or another else getting it from her or giving it to her. It is hard to picture how it's all going to play out.

How are we at home, aside from all this?  Not bad, overall.  Janey has been fairly happy and content.  She is spending her days like a lot of teenagers do---sleeping in, staying up a bit later than usual, watching a lot of YouTube and movies, eating a lot, things like that.  We actually started having a bedtime for her, not to sleep, as no-one can make you sleep, but to be on her bed at 9:30.  The good thing, in a way, about her not knowing how to tell time is that 9:30 can be a bit flexible.  If we can tell she's not tired, it can be more like 11, if she's exhausted, it can be more like 8.  But the amazing thing is she is actually mostly staying on her bed once we say to.  The result is Tony and I are actually having some evenings mostly to ourselves, to watch TV or talk or whatever.  It's nice.

It's been a little tough this past week, as for the first time since she was 11, Janey actually got her period.  The only other time she has was when we gave her medication under the supervision of a specialist.  This time, it just occurred. She mostly seems fine with it, not really much noticing it, but she has had what I think are cramps off and on.  It's awful to see her crying in pain, and knowing she doesn't really get why it's happening.  I've done my best to explain it to her, but I don't know how much she understands.  We have been lucky that for whatever reason, she usually doesn't get a period.

I hope all of you are well, and surviving this tough time.  I'd love to hear how you are coping.  Is there summer school where you are?  How do things look for the fall?  How is it going with masks, with the isolation, with the general tension a pandemic brings?  I hope very much you are all healthy and hanging in there, and I send our love.

This and That

Sometimes I wait to write a blog entry until I have one subject I deem big enough to write about, but this time, I've got just a little of this and a little of that.

Last Friday, Janey had an ultrasound as part of the tests she's having to try to figure out why she, after just getting it once really, has stopped getting her period for the past two years.  After asking around, it seems like this has nothing to do with autism or her other challenges---it's something else.  We aren't that alarmed or worried, but it's something we need to eventually figure out.  Blood tests shows she makes almost no estrogen, which is quite unusual.  Otherwise, there isn't a lot up.  They even made sure she has two X chromosomes, which she does.  I was dreading the ultrasound badly.  There is no real way to prepare Janey for any medical procedure, although I tried, telling her they were going to put lotion on her stomach and then "mush" her tummy a bit.  Of course, she screamed when they started.  But I liked how the technician handled it all.  She talked in a comforting way but just kept going, while Tony and I held Janey in place.  The noise attracted a passing doctor, who also looked at the ultrasound and said on first glance everything looked good.  Now we are waiting to hear from the adolescent specialist as to what we do next.

Janey has been up and down lately.  There were a few days that featured the return of the screaming---the screaming that has no cause she can tell us or we can figure out, the screaming that is so loud it can be heard from very far away, so loud I can't imagine how she stands it without going deaf, or how I do.  There were a few afternoons where it went on for an hour, something that used to happen a lot but doesn't as much now, thankfully.  It brought back all the old familiar feelings of hopelessness and despair, and left us all on edge.  I hope it's over for now.  But there have also been a lot of days lately where Janey has been a delight---happy from morning till night, funny and upbeat.

This weekend, Janey surprised us with a few things she said.  At one point, out of the blue, she yelled over to us "I need a foot massage!"  We were both startled.  She doesn't usually use the first person like that, or use complete sentences, or be quite so direct about what she needs.  She was holding a foot up in the air, so we even knew what foot needed massaging!  That was great.  Later that day, in the car, she said "What does the green light mean?"  I think it's a question she's been asked, but she paused after asking it---she said it exactly how a question is said.

The "talker", the iPad with AAC apps on it, gets a fair amount of use.  Janey seems to enjoy it, but mostly at bedtime.  I also give it to her when she seems to be upset or confused, in hopes she'll find a way to tell us what she wants.  I have two programs on there, TouchChat and Proloquo.  (actually 3, but the third one is pretty useless)  TouchChat is what she uses at school and the one her great teacher helped us personalize, but at times, she seeks out Proloquo.  To me, Proloquo seems more daunting, but it has more content, too.  The other night I saw why she chose it, as she easily got through a few screens to find the word she wanted, "hate".  She'd been in quite a mood, and she hit "hate" over and over and over, while occasionally giving me a meaningful look I had no problem deciphering!  I actually loved that.  She was able to tell me what she was thinking, and it's pretty typical that a 13 year old girl who has spent the day with their mother might be feeling some feelings the opposite of "love".  She isn't usually using the programs for full sentences, more for finding single words, but I am letting her take the lead, and it's fantastic she seems to like having the programs to use when she wants.

All of us in the family have been struggling a little lately with our own issues.  It's been a tough spring in a lot of ways.  But Janey continues to surprise us, to keep showing us new sides.  She is becoming her own person, more and more. We've been pleased lately that she has a trait NONE of the rest of us have---neatness.  She's very organized.  What she uses goes back in the place it's supposed to be.  A little more all the time, she is truly a help around the house, doing small chores we ask her to do and picking up after herself and often after us.  I don't know where she got that neatness gene---maybe from my sister.  But one of the greatest parts of being Janey's mother as she starts her teen years is seeing who she is, seeing her very cool personality unfold more every day.