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.

Why does success have to mean progress?

 Facebook lately gives me some memories to browse every day.  I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day.  Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream!  That's NOT funny!" which I reported I didn't know the origin of.  I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later.  She hasn't progressed in her speech.  She ebbs and flows, but her talking doesn't get better or worse much as the years go by.

For a minute, thinking about her lack of speech progress depressed me.  She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her.  Why hasn't her talking gotten better?  Why hasn't she made any progress?

And then I started to think---why is the only measure of success with kids like Janey that they progress?  Why are IEP goals always about reaching the next level?  Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking?  Why does the fact that Janey stays steady with most skills not make us happy? 

Progress, it strikes me, is how we separate groups of kids with autism.  All kids diagnosed as being on the spectrum start out behind in some area.   But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally.  Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures.  Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?

What if that wasn't how we measured kids like Janey?  What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism?  What if we didn't hang onto the idea that she should be progressing?  What would we use instead to measure success?  What would be our goal?

Happiness.  Pleasure in daily routines.  Connections to others.  Just being herself, and having herself accepted as a meaningful member of society.  That's another way to measure success.

If I use that as my yardstick, I think Janey is a success.  She is happy much more of the time than she is sad.  She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway.  She has connections to many people---more than I do, probably.  She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store.  She is herself, always.  As for being accepted---well, we accept her, her school accepts her, our neighbors accept her.  Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.

I'm asked every year at her IEP meeting what my vision is for Janey.  If I were totally honest at these meetings, I'd say just one thing---happiness.  Let her be happy.  Give her reason to be happy.  Put supports in place so she is happy for all of her life.  That's success.

Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

The summer so far

 Janey started summer school today.  I'd like to tell you how it went, but I really have no idea.  She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face.  There was no note in her backpack.  I don't know who her teacher is.  I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all.  If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think.  Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.

The summer up to this point?  Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer.  We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain.  We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else.  We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos.  She has watched "Toy Store 4" probably 100 times.  She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.

Sleep has been a problem.  As Janey gets older, it's one area that is more of a problem than it used to be.  Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now.  There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row.  To us, it seems impossible.  I truly just don't know how she can do it, without napping during the days.  Other times, less commonly, she'll sleep most of the day and most of the night.  Her sleep just doesn't seem to have the pattern that most everyone else's sleep has.  And that would be fine, except we really can't sleep when she isn't sleeping.  We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her.  We are thankful she's isn't in any way an eloper.  Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice.  So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)

Janey did have a filling done under general anesthesia last week, which went very well.  She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home.  I feel guilty over this boredom, but it is so very hard to get her interested in anything new.  I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway.  But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested.  Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school.  But still, I feel a huge amount of guilt over her limited range of entertainment.  I know I've written about this before, but it's on my mind so much.

Janey will be 17 next month.  That shakes me up.  When I was 17, I left for college.  17 was the start of my adult life.  For Janey, 17 will probably be much like 16, or 15, or 5.  Does that matter to her?  Is there any way I can find out?  Is Janey happy with her life?  Does she think about what her life is, what she wishes it was, what it can or can't be?  Is it enough that most of the time now, Janey is fairly content, or is there more that we should do?  Does she long for more?  There are so many things I don't know about Janey, although our lives are intertwined so closely.  How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things.  Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful.  I hope I can do even in a small part what she deserves.

The Question

 A few weeks ago, I had my 5th bout of diverticulitis in 3 years, and this time, went to the emergency room, as it had been only 3 weeks since the last bout (and only about a week since finishing antibiotics for that bout).  To my surprise, I wound up being admitted.  I've never spent a night in a hospital for my own illness except for being born and having my three kids.  It was eye-opening!  I don't know if any other mother of a child with special needs has had the silly fantasy I've had, of a couple days rest in a hospital bed, guilt-free because you don't WANT to be there, but HAVE to be there.  At some of the toughest moments of parenting, I've thought about how I could lay there, get food delivered to my bed, read, relax and not feel like I was being a bad mother being away from Janey.  Well, as I imagine most anyone who has actually spent sick time in a hospital knows, that was a pretty deluded fantasy.  I was in a double room, slept not at all due to a roommate who was having a lot of night issues which involved pain and screaming and yelling at nurses.  I couldn't eat at all, due to my illness. I didn't read a bit, due to being anxious and also having a coffee withdrawal migraine that just about did me, and I felt guilty being away even under the circumstances.  I stayed two nights, and was very happy to come home when I did, on heavy antibiotics and with an appointment to discuss possible surgery for my diagnosis, smoldering diverticulitis, a rare form of diverticulitis that never really goes away despite treatment, except if you just cut out the sections that have it.

I'm okay for now, but what looking  back hits me the hardest about the whole experience is the question I was asked by a doctor as I was being admitted.  I should have seen it coming---I know it's something they ask, but I didn't.  After going over my medical history, medications, stuff like, the doctor said "Now I'm going to ask you something else.  If something unforeseen and tragic were to happen, and you were dying, would you want everything done to keep you alive?"

I was thrown for a loop for a minute.  I just didn't know what to say.  After thinking a bit, I started on a long, rambling speech about how of course if I were brain dead and had no hope of conscious life again, or if I were going to need life support forever....those kind of provisos.  But she said (and I don't think this lady had the greatest bedside manner) "We are asking it more like a yes or no question".  And so I said, before I thought about it more, "Yes!  Revive me!  I have a 16 year old daughter with severe autism and I have to live forever!"  She answered "That sounds very reasonable", probably taken aback by my lack of basic knowledge of the inevitability of death.

And of course, in the moment, I meant it.  I've thought, as we all have, about how someday my children will hopefully outlive me.  But to think of it concretely, as a question like that, not that it was probably going to come up from that hospital visit, but thinking of it as something that COULD happen---wow.  It's a scary, scary thought.  

It was interesting how Janey reacted to my being in the hospital.  I've gone away for close to a week at a time before, to visit my parents in Maine, and I plan to go again this June, but those times, I prepared Janey well in advance.  I talked to her a lot about when I would be leaving and when I would come back.  This time, she came home from school on a Monday and I wasn't there.  She knew I was in the hospital, and I think she probably related that to when she herself was in the hospital, for something far more serious.  I think she was scared, although she really couldn't express that.  When I got home, she clung to me for a few days---something she almost never does.  I talked to her about what happened, reassured her I felt better, told her I didn't think I'd have to go back to the hospital soon but that if I did, I'd be home again after that soon---all that.  But with Janey, we never really know what she understands.  

Lately, we've noticed Janey is quicker to burst into tears over things.  Sometimes we have no idea what is up, but often, it's when she overhears us talking about anything even slightly upsetting.  I don't know if she reads our tones or understands or words or a combination of both, but she certainly is affected by what is said around her more and more.  She gets over this tears pretty quickly, and that kind of emotional up and downs is certainly something not foreign to any teenage girl, but unlike most of those girls, it's very hard for her to understand degrees of seriousness, to be reassured by reason and facts.  She lives in the present.  Even telling her we'll give her a car ride in a few hours or that school will be back after a vacation is more than I think she really can grasp.  We explain and reassure anyway, because we really don't know exactly what she does get, but it breaks my heart to think of her scared by her lack of understanding.

Before I was admitted, while I was in the emergency room, there was a woman a few beds down.  I never saw her, as there were curtains up, but I certainly heard her.  She screamed almost non-stop, for four hours.  At first I wasn't sure she was verbal, but then at a few points she stopped to ask for specific painkillers, and from the nurse's not quiet talk outside my curtain, I gathered she was seeking drugs.  But there was more going on than that, and I heard a nurse talking to a supervisor at her group home.  I don't know her story, of course, but of course, I thought of Janey.  I thought of her in pain, being brought to a hospital unable to communicate.  There didn't seem to be a lot of sympathy or caring for that woman, which I guess I can get---her screaming was pretty loud, and she was doing other things like making herself throw up and lashing out.  But still---I drew parallels, ones that might not be there, to Janey, to those who for so many reasons are not in the mainstream of society, who can't advocate effectively for themselves, who will always be dependent on others.  And that certainly added to the kick in the heart that I felt a few hours later when asked about my own mortality.  I have to live forever.  Janey, I wish I could.

The Bison, The Scorpion and The Mystery

Janey watches certain videos on YouTube over and over and over and over. She has become very attached to my old decommissioned iPhone, and like many teenagers, has it by her side almost all the time. Her favorite video right now is a Cocomelon one, and if you don't know what Cocomelon is, you are lucky. Their videos feature a too good to be true family, especially the youngest, a strange looking toddler called JJ. JJ goes to an extremely fancy preschool---they go skiing, get tap dance in a studio, go on a submarine and learn to surf. In the video we hear all day every day, it's the Winter Show and Tell time, told about to a tune that is sort of like The Twelve Days of Christmas, but not exactly. JJ has forgotten his project, and his mother is going to bring it later. I wish I didn't know any of that. I am tortured by the video from start to finish. But I also generally believe in letting Janey pick on her own what she watches, and I've read much from others with autism saying that watching the same thing over and over can be very comforting. So...most of the time I just try to ignore it.

 One afternoon, however, I was at my wit's end. I took the iPhone and insisted on a break, and quickly, to try to keep Janey occupied, grabbed my laptop and looked for something she might like. I found for some reason an animal quiz, showing pictures of various animals to identify. The first one was a bison. I didn't think Janey would know what a bison was, and I was right. But what she called it was what really blew my mind. She looked at it for a minute and said "That's a scorpion" The bison in question had horns that folded back on themselves. Looked at close up, the horns looked exactly like the tail of a scorpion. 

 So many questions raced into my mind. How in the world did Janey know what a scorpion was? Why did she focus in on that part of the picture and make the connection? And how did she come up with the word "scorpion", when often she has a very hard time giving the correct name to the correct one of her two brothers, when her talking is so very limited, when she watches a mind-numbingly dull video hour after hour? How the heck does her mind work? What does it feel like to be her?

 I've wondered these things for many years, of course, but lately, it's hitting me more. A lot of it is the fear that Janey is bored out of her mind a lot of the time. It's not like we don't try to expand what she does. The house is full of books and toys, and I try very hard to engage her with them. We take her for multiple rides a day (the only other activity besides the videos she asked for much). We would jump on absolutely any interest she showed and go with it as far as we could. But she is hugely resistant to anything but the videos and car rides.

 It would almost be easier to think that her mind isn't full of knowledge. It truly bothers me to think of all she knows that never gets shown or used. I think about how I'd feel watching the same thing over and over, and I think I'd truly feel like I couldn't take it. I want Janey's life to be full and interesting. So what do I do? And why does it take what almost feels like a party trick to get Janey to let us know what she knows? We've figured out when she really wants a car ride, and we aren't ready to go, she'll answer almost anything we ask, somehow hoping that it's part of the routine to get us going. We don't say that, and we would never force her to answer questions to get to do something she wanted, but still, it can be interesting. Today, in that situation, she gave her phone number, her address, her full name, and when we asked "What planet do we live on?" she confidently answered "Jupiter!" How does she know that's a planet? How is she able to easily recite a 10 digit phone number but not always her name? How can I help her use her intelligence and knowledge to have a life with more variety? What can I do? What does she WANT me to do?

 I'm mostly ignoring Autism Awareness or Acceptance or whatever month. I am as aware of autism as I can be, and I fully accept Janey's autism, and I can't do much about anyone else but myself. But what I really want is to UNDERSTAND Janey. What is her mind like? I wish that there were more studies of kids like Janey, not just those kids with autism that can speak for themselves. I think it's vitally important that Janey and her peers, those with severe autism, with non-verbal or low verbal autism, be understood, that we know how they think so we can help them live their best lives. It means more than anything to me to be able to give Janey the best life possible, but in so many ways, after all these years, she's still a mystery to me.

Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.

All the tough decisions---autism life in a COVID world

As the months go by and we are still living in this endless COVID bad dream, I suspect all of us living lives affected by autism are starting to feel the strain increase.  It's not at all easy for anyone, but for kids like Janey, and families like ours and so many of yours, it's a special kind of tough.

Starting with the new year, it seemed, Janey got more challenging.  We all did.  It's been a long, long haul, and it's winter, and the cases were increasing, and we all had been stuck together as a family for far longer than is mentally healthy.  The biggest issue was sleep.  Janey's sleep started a pattern of one night okay, one night with either a very late going to sleep time or a very early waking up time, and then one night of absolutely no sleep.  And although we did our bests to catnap while she was awake, or to sleep well on the nights she did, that kind of sleep cycle...wow.  We were snapping at each other, constantly tense, really not doing well.  

Janey, in trying to cope, I think, was developing some quite repetitive routines.  One was watching Toy Story 4, and sometimes Toy Story 2, over and over and over.  The other shows and movies she used to like weren't being watched at all.  And not even all of the two Toy Stories were, just certain scenes, repeated time after time.  And while watching them, Janey would laugh, that laugh I think you all know, an insane sounding loud almost humorless laugh, a fake kind of high decibel laugh.  The nights she stayed awake all night would feature that laugh off and on for hours up on hours.

We kept trying, as we have been, to do school at home.  We do the morning meeting, at 8, for which Janey showed varying levels of engagement, and then video lessons such as books with a theme for the week or lessons like a great one her teachers have developed about body awareness and pain.  When we can catch her in the right mood, she'll listen with interest and answer questions, but other times, she simply screams at the top of her lungs at the very mention of the classes.  We resorted to making the lessons a requirement before car rides or other fun times.  That's not how I want school to be for her, some kind of chore.  And that's never how it has been.  None of this is the fault of her teachers, who are doing a hero's job of it all in the midst of impossible challenges.  It's that remote learning is not how Janey learns, and I don't think it ever will be.

With all this, we decided after huge family debate to request that Janey go back to school, which supposedly was available for kids of her level of disability.  We had turned down what was called the hybrid model of learning before, where she would have been able to go to school 4 days a week.  I thought this was a reversible decision, and that by requesting she switch out of remote, she'd be quickly able to return to school.  Well, I should have known better, as in one of the hugely contrasts that exist, the difference between the fantastic teachers in Boston and the (I won't use some of the words I'd like to use here) middle and upper level central administration of Boston, the admin people showed their colors again, and it seemed somehow either impossible or incredibly complicated to switch her model.  Meanwhile, somehow there was supposed to be a switch for most special needs kids to in person on February 1st, but in one of the many conflicting and complicated emails I got, we were told since Janey was in the highest needs level and we had before requested remote learning for her, now that those with less severe needs were going to be able to go back, our previous decision to be remote had to stand, unless we did some complicated other form and (presumably) prayed it worked.  If you are confused, so am I.

However, Janey's teacher and I had the idea that perhaps Janey could go to school for one day, or one day a week, for state testing she had to have.  Even just one day was such a thrill for all of us to think of.  So a week ago Thursday, Janey went to school for a day.  She had a wonderful day.  We had a wonderful day at home.  The effects of that one day, even, last for days and days---better sleep, better toilet use, better moods, and Tony and I, after 10 full months of absolutely zero respite, had about 4 hours to ourselves between driving her in and picking her up.

Part of the day at school was a COVID test.  Janey wasn't excited about the prospect, and resisted at first, but her teacher told her that after the nurse "tickled her nose", she could have a lot of salami.  Brilliant!  She gave Janey a minute, asked her if she was ready, Janey said yes, and the test was taken successfully.

That first week's test was negative. We took Janey to school again last Thursday, so happily.  I especially needed a break.  Midweek I had developed diverticulitis for the third time in three years, with a fever and lots of pain, and a remote appointment and antibiotics and warnings of what signs to go to the ER immediately if I got.  Janey was tested again that day.

Saturday morning Janey's teacher called us to say that the pooled test, where Janey and one other child's COVID tests were combined together and tested, were positive.  Either Janey had COVID, or the other child did, or both of them did.  The school nurse called me a few minutes later (her teacher called me first to tell me in person, which I so much appreciated)  She went over the next steps, which was to get Janey her own COVID test.  

We are getting Janey's test today.  And I'll just note here, when mayors and governors and so on urge testing, well, could they make it a little damn easier to get a test, even in a situation like this where there is more than just an exposure, where there is a 50% chance Janey has the virus?  Can they make it so you don't have to call around for hours and EXPLAIN to the nurse you finally talk to what pooled testing even is, and hear her say "I've never heard of that! That's stupid!  I don't understand why they would do that!" and then act like saying Janey could get a test is some kind of huge favor, and then asking me "Will she even cooperate with the test?"  

Janey has a few mild symptoms which might or might not be significant.  A few nights ago she was coughing a bit, and she had some diarrhea, which is rare for her.  But yesterday and today she seems perfectly healthy and happy.  And thankfully, the rest of us don't show any signs so far.  But still, of course, we have to quarantine, and in fact, the whole high school is going to have to go fully remote (although only about 20 kids weren't remote)  So, for now, our plans of having Janey go to school in person again are at the very least on hold for a while.

I don't have a strong conclusion here.  Were we wrong to send Janey in for those two days?  My older son strongly, strongly feels we were, and maybe he's right.  But as I told him, he hadn't been up night after night with Janey.  He wasn't the one responsible for keeping her together day after week after month, or for trying to get her to access an education in a way she didn't want to and couldn't seem to, she wasn't the one without one second of respite from a very high needs child for literally almost a year.  We want Janey to learn, to be with friends, to have fun, to get the benefits of the wonderful teachers and aides and therapists that are there for her.  But of course we also want to be well.  And you can't really be mad at a virus.  It's doing what all of us are doing---trying to stay alive and go on.  

I'll try to keep this blog updated on Janey's test results.  I hope you all are hanging in there.  Please know you aren't alone during these long months.  There's a lot of us out there living this life.  Whatever decisions you make about schooling, know that you are doing the best you can in your situation.  And join me in hoping that a year from now, this will be part of history.  Please.