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!

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.