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Monday, October 19, 2020

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.