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.

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.

Autism in the time of Coronavirus

The coronavirus pandemic is, by very definition, a worldwide crisis.  It affects everyone on earth. I always try to guard against appropriating issues that are certainly not mine alone.  That being said, there are ways this crisis is affecting those with autism, and to narrow it down more, my daughter Janey, specifically and strongly.

Of course, because everyone with autism is a unique person, and there is no one autism personality, set of skills, collection of challenges, I can only speak only for the person with autism I know best, Janey, and even then, I can speak only as her mother, not as herself.  That being said...

Janey was having, up to last week, the best year of her life, I think it's fair to say.  She loves high school.  Loves it completely, with abandon.  All reports, all pictures sent home, all signs were that she felt she'd found her place.  The time from the start of this school year until now was the longest ever almost uninterrupted stretch of happiness for Janey ever.

And suddenly, that ended.  From one day to the next, there was no more high school to go to.  We know the reasons, but I truly don't think Janey does at all.  Of course, I explained it to her.  I try to always assume competence.  I told her as best I could what was happening.  I don't know how much she understood. Being completely frank, I don't think it was much.  Janey has a pretty significant intellectual disability, and I think the idea of a worldwide pandemic is beyond her.  What she did understand is that for now, school is over.  I know she understood that, because when I told her, she screamed.  And said, over and over, "No!  No!  No!"

I am constantly thinking back to when I was Janey's age, 15.  I loved high school too.  I look at pictures of me from that time, and the smile on my face, the very cheerful look, is so much like Janey's.  I loved the mix of structure and chaos, the feeling that anything could happen, but it was going to happen within a somewhat controlled framework.  I loved being out of the house, on my own but still with a home base.  I loved being with my friends.  And, like many 15 year old girls, I was a bit boy crazy, spending hours writing in my diary about whoever I had a crush on at the time.  At Janey's IEP meeting, I loved in a lot of ways hearing about how Janey had to be reminded we don't hold hands during class.  She is one of the few girls in a cluster of classrooms full to the brim with boys, and she is not unaware of that.

And now, for reasons she doesn't get, she is home.  She is not only home, but we aren't going anyplace fun.  In her eyes, I am sure it feels like we have just decided to take away what she most enjoys.  What bothers me the most is that I think she believes that everyone else is there at school, having the time of their lives, and she is home without them.  I've tried everything I can think of to explain that isn't the case, but I don't think she gets it at all.

Janey has reacted to all of this with a huge regression.  She is biting her arm all day until it's raw looking, she is screaming often, she is crying a great deal.  She is showing behaviors we haven't seen in this intensity for a long time.  And seeing her regress, it all comes rushing back.  We as parents of a child severely affected by autism are living one tantrum away always from fear of it all going to hell in a handbasket. My mind can't help but take me to one of the worse days ever---to a hospital emergency room where Janey is biting and flinging objects and so out of control that there are suddenly police officers all over and I am being walked out out of the room so Janey can be subdued without me.  I would guess many of you have your own scene like that---the scene that the mind has a strange attraction to.

The school system in Boston is doing all they can to help kids get through this time, and as almost always, I am grateful for that.  We are taking Janey every day to pick up breakfast and lunch, a little piece of routine.  Her teacher has set up a Google classroom and today I will show Janey the videos there.  But much of what the schools can do just simply doesn't work for Janey.  The kind of work she does at school at this point really can't be reproduced at home.  We can't give her a dance class full of other kids, or a big swimming pool, or field trips with her friends.  We can't give her a long bus ride through the city, or a big staff of people who love her.  We can only give her our little staff at home, and she isn't happy about that.

For many families like our own, school is our one and only source of respite. With Janey home, that respite is over for now, and that is one of the toughest parts of this all.  Her respite from us is gone, too.  It's much easier to take a step back and work on ways to deal with this crisis when you are getting sleep, which we aren't, when you are getting some time away from the screaming and the frantic demands of a confused and unhappy child.  

Under all this, of course, is the same fear that almost everyone has, that we will get sick.  Tony is a diabetic.  I have quite a few underlying conditions.  If either of us got sick, it could be, well, pretty bad.  It evokes the black hole of fears when you have a child like Janey---the fear that you won't be there as a parent.  As my friend Michelle and I often say, and as many living this life understand, we as parents have to live forever.  The thought of us not being there for Janey....I can't even go there.

I know that not every child with autism is Janey, is like Janey.  For some kids, this break from school, this time at home, is a dream come true.  Some kids and parents will probably look back at this, assuming we get through it and all in the family are okay, as one of the best times in their life, strange to say.  And that too is part of the story of autism at this strange time in history.  

Thank goodness for the internet.  I think that all the time.  Thank goodness we can be with each other virtually.  Thank goodness for that gift from above, Disney Plus, without which right now I can't imagine life.  Thank goodness for being in contact with my autism mother friends.  Thank goodness my son William can work at home, helping to keep Tony and me safe from sickness.  Thank goodness for all that helps us not feel alone.

I would love my Facebook companion page to be a place you can vent, a place that I will do everything I can to keep as a refuge for those who need it.  

I will close with what I've noticed has become the default close in this past week.  Be well.