Janey and remote learning

 Zoom meetings. Remote learning.  Those terms, in the future, when hopefully this COVID year is a memory and school once again means actually going to school, are going to send a shiver through me.

Remote learning just doesn't work well for Janey.  To be fair, sometimes in person learning doesn't work well either, but that's if we look at things from a strictly academic perspective.  In person learning has almost always worked in terms of helping Janey---making her happier, teaching her social skills, giving her life a purpose, keeping her active, and giving her time with some of the finest people I've ever known, her teachers and paras and therapists.  Remote learning can't replace school for her.  It probably can't for anyone, but for Janey, it's been a bit of a nightmare

What's hard about it for her?  The biggest challenge is just getting her to sit down and listen and engage with the computer.  I say "the computer" and not "her teachers" because I truly don't think she understands the people she sees on the screen are her teachers.  I think she sees it as some kind of video that talks back to her and makes demands on her that regular videos don't.   Unlike how she watches TV, it also requires her to stay in one place, to listen in order, to answer things.  When she watches a video, she moves around constantly, rewinds often, changes shows, turns things off and on.  No-one asks her questions.  It's her time.  Now, she's suddenly, in her eyes, being asked to watch videos that oddly feature people she knows in real life, and to watch them without constantly getting up, and without being able to stop and start and switch around.  It's not her cup of tea, to say the least.

At school, everyone learns pretty quickly there's some days that Janey is ready to engage and some days she isn't, and some times during each day she's more alert and other times you can't get a word out of her.  But remote learning is only at certain set times each day, and they often aren't her chosen times.  Her poor sleep lately means that sometimes it's time to do school when she's sleepy, or hyped up from not sleeping, or just not in the mood.  She's been doing fairly well each morning at 8 with the morning check-in, but that's only about 10 minutes.  Even that requires us to remind her over and over and over to stay at the screen.

There is also so much that can't be captured on a screen.  There's so many times Janey has answered a question when she's muted, or pointed to something on a screen when it's not a touch screen, or gave a response to something that was asked minutes ago.  In a classroom, that would be noticed, but when a teacher is trying to teach 5 or 6 kids like Janey at once, or even in one on one sessions when Janey is not positioned right in front of the screen or loud enough or clear enough, so much is missed.

A classroom is full of activity, things to look at, things to engage with.  A screen isn't.  The teachers have done their level best, but nobody was trained for this.  It's not something we ever anticipated.

So...what do we do?  I am not sure.  I know I've pretty much given up on remote learning.  Janey goes to the morning meeting, has music therapy once a week and once in a while watches recorded lessons, but I am not pushing a lot more.  When I did, it wasn't pretty.  Janey reverted to scarily tough behaviors.  We got the message.

I want Janey back in the classroom, IF that is safe.  It's looking more like it might be, from my reading.  I don't think COVID is spread much at schools.  COVID is hugely scary, something I would like our family to avoid getting at almost any cost, and I fully understand why schools closed.  And if science shows they need to stay closed---well, so be it.  Nothing is more important than staying alive, of course.  But I am now at the point that if school opens, and those with more knowledge than myself determine it's safe, even if no-one can say it's 100% safe, I'll send her.  Nothing is 100% safe, ever.

I wonder how other families are handling this, how remote learning works for your kids, what your schools are offering.  I'd love to hear from people around the US and around the world about your experiences.

Stay well!

Every day for a week

 I've been neglecting this blog lately.  Most of that is the whole pandemic related every day feeling the same bit.  It feels like nothing changes, like we are all just in a big holding pattern.  But thinking about it yesterday, I realized actually lots has been happening.  Being with Janey 24/7, we are every day learning more things about her and figuring out more ways to engage her, and understanding more how her mind works.  I've had a lot of thoughts I'd like to share, but I kept feeling like I had to wait to write until I tied them all together and had some perfectly worded way to sum them up.  When thinking about this last night, I realized I just need to write, to get back in the habit.  So bear with me as I start my week of blogs---a little each day!

I'll start with---how are we doing?  Okay.  We're doing, well, okay.  Like everyone else, we are tired of this whole bit, but hopeful that maybe a light at the end of the tunnel is starting to be visible. Janey hasn't been in school in person since March, not a day.  At one point she was offered a hybrid model, which would have resulted in the end in her having about 4 days total in school before it shut down again.  I sensed that the renewed shutdown was coming, and I just didn't think it was worth the risk to send her.  I'm glad I didn't.  Now only a very, very few kids in Boston are going to school, and Janey is not one of them.

Remote learning---well, that' s not easy with Janey.   Her teachers and therapists have been trying hard.  Janey now pretty much tolerates the morning meeting, which lasts about 10 minutes, starting at 8 o'clock.  She will sometimes watch recorded lessons, with varying amounts of interest.  I can get her now and then to do a little bit of work on paper, circling things or listening to short stories.  But it all adds up to vastly, vastly less school than actual school, probably about 1/100th as much.  And no real social contact, no special things like swimming or dance, no time away from her family.  When I think about her being 16, and how limited her life is----well, it's not great.

And from the perspective of Tony and me---that's tough too.  We have absolutely no time at all without fully caring for Janey.  School always gave us a bit of time to breath, to nap if necessary, to regroup.  Caring for Janey is a lot like caring for a toddler in an adult's body, day and night and day and night.  We are tired.  Janey's sleep hasn't been great, to say the least.  About once a week, she doesn't sleep at all, and maybe two more nights of the week, she sleeps very little.  We can kind of catnap while she's awake, but not fully sleep (and I must give a shoutout to Tony, who does the vast majority of the night caring) and Janey wakes us up often to get help with videos, ask for food, ask for car rides, all that.  We are hugely worn out.

But it all could be a lot worse.  None of us have gotten sick, thank goodness.  Janey will wear a mask to go to the grocery store, the one place we go, and Tony takes her there almost every day.  Except for when we were trying hard to recreate school at home, which caused a huge pushback from Janey and some very tough behaviors, she has been mostly cheerful, and often a very lot of fun to be with.  We are getting by.

I'll write a lot more in the week, about Janey's speech, about remote learning, about things I've discovered about how she learns, about music and car rides and siblings and so.  For now, I'm just sending out love to all of you, and hoping you are coping.  Let me know, so we can all support each other!

As the pandemic rages on...

 We are hanging in there!  I keep thinking back to March, when the schools closed and they announced they were closing for a month, and I thought "A MONTH?  Isn't that a bit extreme?"  And here we are, in October.

The Boston schools did open part time for kids with more severe special needs, and Janey was eligible for in-person schooling a few days a week, but we opted against it.  Tony and I really need to not get sick, and it just didn't seem to make sense to send Janey off on a bus to a school when the daily routine would not be as she liked or expected, as hard as her teachers would have tried for her.  So we are doing modified homeschooling, using work delivered by her teacher each week.  We aren't pushing her much, to say the least.  When we started up last month, we tried, and she immediately pushed back, strongly.  We saw some very tough behaviors, things we haven't seen for ages.  When we stopped demanding as much from her, the behaviors eased and at this point, are gone.  She spoke loudly in the way she is able.  

It's hard seeing the divisions and anger and infighting in the Boston schools.  There are those who very much want more in-person schooling, and those who want no in-person schooling.  I can see both sides.  I feel sometimes like I sound like a wimp saying that, like I can't take a stand.  But the truth is, in this issue, like so many, there is no one right answer.  As I've said before, if we were in the middle of the toughest times with Janey, I would have sent her to school even with the risks involved, because we would have absolutely, completely needed that respite and support.  If I had a young child, just diagnosed, and I believed that every second was vital in her development, that I was missing out on some closing window to help her, I would insist on in person school.  So I understand anyone that feels that way.  I also know many school districts have safer buildings, less bus rides.  I have dear friends who are sending their children to school safely.  

In Boston, though, I feel very much for the teachers who are angry in person school is still happening.  The union made an agreement that if the positive test rate for COVID went over 4%, there would not be in person school, but somehow, once it did, that wasn't honored, due to some loophole.  So many of the school buildings in Boston are old and absolutely not well ventilated.  Teachers are being asked to teach under conditions that aren't safe, due to what seems like an unwillingness to only use the buildings that are actually safe.  I feel for my teacher friends and family, very very much.

All that aside, we are at times kind of enjoying this break from the routine.  Once we listened to Janey about what she could handle and not handle at home, she's a joy.  She's been so much fun to be with.  She is in one of her more active talking periods---mostly echolalia, delayed or not, and scripting, but as I am glad more people are realizing, that's not random.  It's a way of communicating, a kind of cut-and-paste way of talking.  Yesterday, for example, as Tony watched a little football, Janey came in the room and shouted "That's a touchdown!"  I'm sure she's heard that on the TV, either just then or another time, but she hears a lot of things on TV and doesn't say them.  She knows, to our surprise, that a touchdown is the vital thing with football, and it was so very cool to have her join in and speak up!

On the beach in Truro, Cape Cod

We've even travelled a bit, in a socially distanced way.  I've been doing a project for a while of taking pictures of all the town halls in Massachusetts, and we've done two overnight trips to parts of the state to collect pictures---one to Western Massachusetts and one to Cape Cod.  We've felt safe in very clean hotel rooms, wore masks and didn't go into any stores or restaurants, and we've had a great time.  Janey travels well.  She doesn't care for idle sightseeing or shopping or anything, so this type of travel works for her, although I certainly must admit I'd like to wander around quaint downtowns or relax at a beach a bit more than she likes.  It's sometimes frustrating, but it's still fun.  Not having the tied down school schedule is great for minor travel.  

In the car, Janey loves listening to music, but for a while, she was driving us crazy by saying "music please, music!" all the time, which means "I don't like this song, go to the next one!"  She would say it for every song for hours.  We have tried to give her control of the music by letting her hold a phone Bluetoothed to the speakers, but she doesn't like to do that.  Instead, she wants us to be her music changer, and I think often she has some specific song in mind, and just hopes to hit on it by us constantly changing music.  Needless to say, we couldn't take that forever.  So we actually stood our ground.  We told her that some car rides were her turn.  On those, she got to pick the music, and we'd change songs whenever she wanted.  But other car rides were Tony's or mine, and on those, we'd listen to what we wanted.  If on those rides, she said "Music please, Music!", we'd simply turn off the music, and say "We'll take a break"  We wouldn't force her to listen to music she hated, but we wouldn't constantly change the music either.  Surprisingly, this worked.  She has been listening to our music and not objecting (much!) and enjoying her music.

Janey in her Coco top

Life with Janey is interesting. We are learning, gradually, how to listen to her no matter how she communicates, and learning also when to stand our ground and when to give in.  It's like that with all children, I know, but with Janey, it's easy to fall into the extremes---being in total charge of her for what might be seen as her own good, or giving in on everything.  These recent easier years are partly just her growing up, and partly us learning what works, and how to trust our own instincts as to what works.

I hope you all are well, and I hope we all can stay in touch via Facebook during this crazy time.

Frustration with the schools (not the teachers!)

 Over the years, I've been a big cheerleader for the Boston Public Schools.  I am a fan of public schools in general, and I've always tried to let people know it's very possible to get a very good education in Boston without feeling like you have to send your child to private school or you have to move out of the city.  For those of you not in Boston or near it, the Boston schools don't have the greatest reputation.  I've felt for many years that poor reputation is not justified.  My three children, all very different from each other, have been for the most part well served in Boston.  

My feelings haven't changed when it comes to the teachers, or the therapists, or the paraprofessionals, or the principals.  I can truly say in all my years, which add up to 23 years now, of having my children educated in Boston, I've only encountered two or three teachers, out of literally hundreds, that I would not happily have teach my child again.  Indeed, I've had far more than my fair share of absolutely amazing teachers, of therapists that care deeply, of paraprofessionals that I would trust with my children's lives without a second thought, of principals that took a personal interest in my kids.  

But the school system in general?  The upper management, the central office, the bureaucracy?  Well, I'm not too happy with them.

Nobody can be blamed for COVID-19 existing.  It's a virus.  You can't be angry at a virus.  But I am angry at how the whole crisis has been handled in Boston, quite angry really.

I've talked through Facebook and by phone to many, many other parents in other parts of the US and world, and overall, it seems like most school districts are finding a way to educate kids like Janey.  At the very least, most districts seem to have used the summer to make plans, to find a way to  bring the kids that just don't learn well at home into the schools as safely as possible.  Some parents have chosen to keep their kids home anyway, and that is certainly understandable.

Technically, we were given a choice with Janey---remote learning or a hybrid method, 2 days a week at school.  But after talking to her teacher and hearing what those two days a week would be like...wow.  They would be in one room, with masks on, never leaving the room, teachers not allowed to touch the kids at all, much of the teaching taking place by Zoom meeting even in the room, as teachers would not be circulating. That isn't a classroom model that would work in any way for Janey, or for most kids with autism.  So we chose home education.  Janey's amazing teacher understood that Zoom meetings don't work for her, and she is going to provide us with weekly materials (which she had to do a funding drive to get money for---no thanks to Boston there) to teach Janey with.  

Janey's room at school has no opening windows, none at all.  She rides a bus for an hour each way to school and back.  She will wear a mask for short times, but I'm quite sure she wouldn't leave one on all day.  She lives for walking around the school, for field trips and swimming and dance.  It would be both unsafe and deeply unsatisfying for Janey to go to school as it has been set up.

I attended a big Zoom meeting for Boston parents of special needs kids.  I won't go into it in detail, but it was awful.  A politician was allowed to grandstand for a long time, an ABA specialist took up a long period of time during a meeting meant for PARENTS to ask questions (she had good ideas, but at least 50 parents had questions that there was no time to answer during the too short meeting), and most disturbing to me, a school official outright lied.  He was asked (several times) if teachers were going to be given adequate PPE (personal protective equipment, like masks, shields, etc.)   He said emphatically "Yes!  Absolutely!"  Well, as of last week, I have been told that such equipment is not only not being given to teachers, it hasn't even been ordered.

Even if we had chosen to send Janey to school, school isn't starting in person until October 1st, or at all, even remotely, for another two weeks.  I don't see any other district anyway that isn't even having any school this September, basically.  The schools had all summer to prepare.  This didn't all come out of no-where.  But from what I can see, infighting and attempting to please every politically powerful faction took up the time that should have been spent on one big goal---finding a way to safely educate the kids of Boston.

I know that the powers that be would argue they just can't find a way to safely educate Janey and her peers.  But I wonder---why, elsewhere around the country and around the world, are so many other kids like her back in classrooms already, safely, with teachers that have the equipment they need to be safe, with classrooms that are ventilated, with few enough kids in a room for it to be safe, without a mask requirement for children whose special needs just make it impossible for them to understand why they need to keep a mask on?  

Boston school buildings are underutilized.  Janey's high school has a population far, far smaller than the school was built to hold.  All the time, attempts are made to close some of Boston's 125 school buildings.  Surely, somewhere in the city, there are enough classrooms for kids like Janey, the highest need students, to safely attend school, and surely, there are enough teachers that, if given the proper tools, would feel safe teaching the classes.  I don't want any teacher that doesn't feel safe or supported to teach.  Many teachers have small children, or medical conditions, or the like.  But if only teachers who felt safe teaching were to teach the high needs kids, as is happening what seems like virtually everywhere else, and if Boston could be flexible and open classrooms in buildings that have good air circulation and opening windows, even if that required Janey and others to temporarily go to a different school---well, you would really think a city like Boston could do that.  And you think they would be shamed by seeing that everyplace else pretty much in the world is finding a way to do what they can't seem to do.

We're fine, ourselves personally.  Janey is 16.  Although it's not what we want, truthfully she could stop going to school now and it wouldn't be a tragedy.  I was prepared to have her drop out if the schools had been rigid about Zoom meetings for her schooling.  But there are so many young kids with autism in Boston who desperately need schools.  And although we are managing, Janey is regressing in a lot of ways.  Her toilet training has been, well, set far, far back.  She is talking less much of the time, and lately, especially after seeing her teachers outside in a socially distanced meeting---which was great---she seems to be upset she's not in school.  She can't express that directly, but it's fall.  She knows fall, and she knows that is when you go to school. 

One of the things that was said at that infuriating Zoom meeting for parents, when a parent poured out her heart about how hard this all has been, and how she didn't feel equipped to teach her young child with autism, was that there are many social service agencies in Boston designed to help the special needs community, and "we are going to work with them to get services and help for kids who need it" (not the exact words, but along those lines)  I think of all of this, that makes me almost the angriest.  You are GOING to?  Why hasn't that been happening right along?  Why are there untold numbers of agencies that I know have a mission and funding to help kids like Janey, and that are I am sure are well-meaning, but that don't work with the schools, or each other, that don't ask parents what we really need, that hold endless workshops and support groups and make up nice fliers but don't provide ANY respite, ANY after school programs, ANY direct help, except maybe to a small number of people that know exactly the right way to ask for it and have the means and personality and connections to access the help?  Why can't help be OFFERED to those who truly need it?

I'm angry.  I'm angry that the overpaid, overstaffed, underworked bureaucracy of the Boston Public Schools is failing the children of Boston, and the teachers of Boston, and the everyday citizens of Boston.  I don't get angry easily, Boston.  It took me 23 years to get this angry.  But I'm angry.

How would we have done it?

One phrase that I think most families with special needs children don't like is "How do you do it?", sometimes phrased as its twin "I don't know how you do it!"  We know the phrase is usually meant in the kindest of ways, and that it's an acknowledgement of some of the struggles our families can face.  But it can feel hurtful in a couple ways.  One is that it makes it seem like our child has created a situation so difficult that others can't even imagine what it would be like to live our life.  Another is by saying, in a way, that we ARE doing it, by making us somehow separate, set apart, somehow as a family unit handling it all ourselves, and not in need of help, due to our superhero status.  Both views of our families are untrue and unhelpful.

That being said, lately I've been thinking a version of the "How do you do it?" myself.  It's in the form of "How WOULD we have done it?"  How would we have handled this pandemic, this lack of school, this isolation, during what I always think of as the Tough Years---approximately from when Janey was 5 until 10?  Those years...wow.  Those were the years in which an inclusion school which aimed to include all special needs students realized they were not up to including Janey, and then, while in the autism program she moved to, she was so unhappy and angry that the day came that I got the call that she wasn't even safe to go home, that we needed to come to the school to go with her by ambulance to the emergency room, the start of an ordeal which include six horrible days at Children's Hospital and 3 weeks of Janey being in a psychiatric hospital.  Those years featured many, many days where Janey screamed all day, literally, days when she bit herself hard, days when she cried heartbreaking tears for hours, nights of her fury and sadness that seemed like they would never end.  But during those years, there was school.  We had about six hours a day when we could sleep (or often, just I could---Tony was working, most of that time at a job an hour from home, and how he ever lived through those years I'll never know), recover, breathe, know that she was cared for.

But what if the pandemic had been during those years, and there was no school?  I think about that all the time, and I truly wonder how we could have done it.

Of course, the thing is, lots of other people with children with severe autism are living through those tough years right now.  And I think about them, all the time.  I think about how it must feel to have a child so desperately unhappy, and to be trying so very hard to help them, and having absolutely no respite---no school, no activities, no nothing.  I think of them trying to think of ways to fill the days, and to get some rest.  I think of the siblings, trying to learn at home in a household that might be often filled with screaming or hitting or crying.

If COVID-19 had happened during the Tough Years, I have to say honestly that I would have sent Janey back to school the second school was open, even if I wasn't sure it was safe, even if I had huge fears about the virus.  I would have sent her because I would have known that we simply had to---in order to stay sane---not just us as parents, but her too.  I would have taken the risk, the possibility of sickness weighed against the absolute knowledge of what more time at home would be like.

This knowledge is why I am not sure how I feel about schools staying closed. If we lived in an ideal world, I would feel sure they should stay closed, but we don't live in that world, and I know there are families out there right now just barely hanging on.  I think about the teachers, with families of their own often, and I know they will be put at risk going back to in-person school, as well as the aides and lunch workers and bus drivers and therapists.  I worry about all of them.  But I can picture most, of course, the situation we have lived through, the child who needs help so badly and the family so extremely stressed by that child's needs, and I worry so much about how they are managing to go on. I know some of you reading this might be living that life right now, and feeling like you are very alone. I wish I could help more. I wish I could come to your house and take care of your child for a day or two, so you could sleep and recover. I wish I had magic.I wish I could fast-forward your life to calmer years.  But right now all I can do is tell you I am thinking of you.

We are so lucky.  Janey, at almost 16, is happy most of the time.  Aside from a period of adjustment at first, and from the days she got upset by Zoom meeting school, which we will no longer do, she has been a champ during this time at home.  We are enjoying her.  Most of that is just her maturing.  Some of it is changes we made, changes in our expectations of her and also changes in our lives.  Tony retired early, which has been a financial challenge but without a question absolutely a right decision.  The boys are older.  We are okay.  We hope that Janey can safely go back to school at some point, because she loved high school, but for now, we are okay.

I hope all those in the places of decision making do give a thought to those who are in the Tough Years of severe autism.  I hope we can find a way to help those families get through this.  I won't say to them that I don't know how they do it.  I know how they do it.  They do it day by day, hour by hour, minute by minute.  They do it because they love their kids, their amazing kids.  But they need help, and we as a society need to figure out how to help them, especially in these extraordinary times.

Tough realizations about school

I spent a few months living in a hopeful dream world.  I hoped that school could start in person in the fall, and Janey could go back to the high school experience she loved so much.  She could get on the bus early in the morning, have a nice long ride, spend the day with peers, go to music and dance and swimming, take field trips, be with adults who cared for her and enjoyed her, and then taken another nice long ride and came home again, contented after a full day.  

It's hard to believe the changes the last six months have wrought on the whole world.  

There has been no official words on the status of school in the fall for Boston, except that it won't be full time in person.  But after thinking it out and emailing with Janey's teacher, I finally had to face facts.  Janey won't be going back to school, not at all.  

If she went to school, it would be a school experience stripped of everything she likes about school, and everything that is important to us about her schooling.  Being in a classroom of teens with severe special needs, teens with little or no understanding of social distancing or the importance of masks, she would be behind plexi-glass shields.  She would not leave the classroom all day.  Teachers would not be able to touch her.  She couldn't move around.  

Even under those conditions, if someone got sick at her school, it would be closed, and the little hint, the pale shadow of her old schooling experience would shut down again for weeks.  Her school is very close to the area of Massachusetts the very hardest hit by COVID-19.  It wouldn't stay open much.

The bus would likely be impossible.  It was the weakest link last year, often not showing up, changing drivers almost weekly.  I can't imagine it would work, with older drivers, with kids that would certainly take off their masks often, with social distancing.  If Janey went to whatever version of school was available, we would have to drive her.  In Boston traffic, it's an hour's drive each way to her school.  We'd spend 4 hours of our day in school transport.

So...I finally,reluctantly admitted to myself---Janey isn't going back to school.

And distance learning, Zoom meetings?  It's almost an afterthought in my mind to say "No thanks".  Like so many other kids with Janey's kinds of needs I've heard about, Zoom meeting school simply doesn't work, in fact,more than that, it makes things worse.  Imagine a bored, frustrated teen, and trying to keep them from melting down all day, and then add in an hour or two or more of also trying to force them to sit in front of a screen they don't want to watch, one that seems to them to be playing a video strangely featuring some people they recognize, but one where now and then they are asked to say something on command.  A video that tries vainly to meet the needs of a dozen or so kids with wildly different needs, but all with high needs.  Imagine spending the whole time this video plays trying to keep your teen sitting in one place, waiting for their turn to answer a question they wouldn't be inclined to answer under the best of circumstances.  No, that is not school.

And so, one way or another, we are going to homeschool.  I'm not scared of that. It's not my preference, and I'm quite sure not Janey's preference either,but it's what we are going to have to do.

I think it's human nature when faced with a situation we don't like to place blame.  It's almost comforting to be able to have an enemy, a foe to defeat.  There is one in this situation, but it's not human.  It's a virus.  No-one human has done anything to cause this (politics aside, and that is how I generally try to live my life, with politics aside).  Everyone would like Janey to be able to have school in the way she could last year, but safely, and practically, she can't.

I lie awake nights thinking about how I can best educate Janey.  Sometimes, I admit thinking I might not really try, not to formally educate her.  She will be 16 in less than two weeks, and in our state, I think that's old enough to drop out.  I could just call it a school career for now.  But I don't think that's the best plan.  We had planned on Janey being in school until she was 22.  I am still hopeful that after a year or so, she will be able to go back to school.  

I'll write more in another post about how I'm going to try to set up homeschooling.  For now, I'd love to find out how the rest of you out there will be handling school this fall.  I'm feeling isolated, scared, alone, more than I have in many years.  It's such a house of cards, this life we cobble together for our kids, and it takes just a touch for it all to fall apart.  We have gotten, as a world, something more like a hurricane aimed at our house of cards.  It's going to take a while to build it back.

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.