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Monday, November 26, 2018

The Mystery of the No Sleep Nights

My mother is a huge fan of mystery series books, like the Nancy Drew or the Judy Bolton ones.  The title pays homage to that, and to the fact sometimes life with Janey can feel like a long series of mysteries.  One of the biggest ones is why sometimes Janey simply skips a full night of sleep.

Overall, sleep is not one of the biggest issues we usually face with Janey, at least not compared to a lot of kids with autism. (knocking on wood here, of course!)  She goes to bed fairly early, usually somewhere around 7 or 7:30, and gets up early, about 6.  While she's asleep, she barely moves, and we can usually be as loud as we want to around our small house without waking her.

However, once in a while, probably 10 times in her life, Janey has just plain skipped a night of sleep.  When this happens, she doesn't sleep at all.  Not one wink.  And almost always, the next day she isn't particularly sleepy.  It's like for that one night, she just didn't need to sleep.

I don't have seven clues, but I have a few!
This happened most recently Thanksgiving night.  Janey was not in a good mood for Thanksgiving.  November is often one of her tougher months, and she'd had a fairly rough week.  There was a lot of screaming that day, so we were looking forward to a night's break.  But she just never went to sleep.  Tony stayed up with her until about midnight, then I took over.  The funny thing was that she was much more cheerful during her normal sleeping hours than she was the day before or the day after.  Although she wasn't sleeping, it was like she was in a different mode than regular daytime.  She was up until 5 pm on Black Friday, then went to sleep and slept all night.

What do we do all night on a no sleep night?  Mainly watch videos.  I could insist that we turn off the TV, but I know that would do no good.  Believe me, I've tried, and believe me also, once you get a ways into a no sleeping night, you do whatever you have to do to get through the night.  When Janey is watching videos, I stay right near her on the couch and struggle to keep my eyes open, and change videos when she needs me to.  Sometimes she asks for a ride or a shower, but in a mild way.  She seems to know what she can do in the middle of the night and what she can't do.

There isn't much of a pattern to these no sleep nights.  Sometimes they happen when she's in a good mood, sometimes bad.  Sometimes she seems manic, sometimes there is no sign at all she won't sleep.  Sometimes we realize she's had chocolate after noontime, which disrupts her sleep badly.  Sometimes she has eaten nothing out of the ordinary.

As I often do lately when trying to figure Janey out, I think of what any teenage girl of 14 would be doing.  Although I think my sleep at that age was pretty regular, of course sometimes I stayed up late.  This was usually when spending the night at a friend's house.  I know there were lots of nights that I was up until 3 or 4 am laughing hysterically with friends, probably discussing who had a crush on who for hours on end.  Maybe an occasional late night or no sleep night is just something Janey needs, to break up the routine a bit.

Another theory I have is that the no sleep happens when Janey's brain is working on processing something new.  Lately, we've noticed her talking is on an upswing.  We've been hearing some longer, more complete sentences---for example, instead of saying "Go to the store!"  she might say something like "I want to go for a car ride to the store" or "I want to get salami at the store"  This isn't all the time; it's still pretty rare, but it's nice to hear.  She has also been reversing pronouns a bit less.  One night she wanted a shower, and I said "I'll give you a shower in a minute" and she said "You give me a shower in a minute"  which surprised me quite a bit.  Maybe when her brain is making new connections, it's hard to sleep.

When the nights happen rarely, as they do, we can manage it, especially now that Tony is retired.  But if they ever started happening on a regular basis, like more than once a week or even once a month, it would be very hard to take.  Janey needs to be watched at all times.  I think about parents who have kids with much more severe sleep issues than Janey, and my heart goes out to them.  It's a case where I have to hold myself back from saying what I myself don't like to hear---"I don't know how you do it"---because I do know how you do it.  You do what you have to do.  You scrape by.  You drink a lot of coffee and take naps when you have a moment's respite.  You live with a sleep deficit.  But I know it's not easy.  As I write this at 8 pm, Janey is fast asleep, and I hope everyone reading this gets a good night's sleep---if not tonight, some night soon!

Wednesday, November 14, 2018

Visiting High Schools

Although it's extremely hard to believe, Janey will be in high school next fall.  And so we have been doing visits to the high schools in Boston with an autism program.  It's been interesting.

We've visited three schools so far.  There's another program which is in a building that is closing this spring, and the future of it is unsure, so we haven't visited there, and there's a few other specialized programs we haven't seen, such as the high school part of the inclusion school Janey used to go to.  But the three we've visited are the three main choices we have right now.

To start with, I'll say that at all three schools, I was impressed with the dedication, talent and caring of the teachers, administrators, aides and other staff I saw.  That has been the case almost universally as we've been involved in the Boston public schools for the last 21 years with our three kids.

However, there were rather huge differences between the programs we visited.  This is another hallmark of the Boston schools---the uneven distribution of resources and the way it always feels like each school is a world unto itself, with little feeling that any school really gets what another school in the very same district is doing.

The complex map of Boston schools!
The first school we saw was very close to us---we could walk there.  It was in an old building that in fact Tony's 3 siblings went to high school in (he's the baby of the family by 13 years, so their high school years were a while ago!).  The building had been totally renovated, and was strikingly clean and orderly.  The program was in the lower level, and had 4 main classrooms.  We saw all the classrooms, but at the time we looked, none of them had students in them.  I guess that's not that uncommon a state of affairs.  The woman giving us the tour said that some students in the program are actually fully integrated, others are away at work sites almost all the time, and some are working at places within the building.  That was a bit of a theme there---work.  The program seems mostly set up as a pre-vocational one.  The students, once they are 18, actually get paid for their work, and they do all kinds---car washing, catered meals, recycling and others, in and out of the building.

We did see the students eventually, in the gym shooting baskets.  We got to talk to a few of them.  The ones we talked to were quite a bit more verbal than Janey is, and although we were told there are a wide variety of students there, I got the feeling most were probably more academically and spoken language oriented than Janey.

We asked about electives like music and were told there are none at all, at least not formally.  Aides do provide informal electives.

We left feeling that Janey would be safe there, but not that it was really the place for her.  I somehow couldn't quite picture Janey there.  She isn't interested in or really aware of money, she certainly wouldn't be into shooting baskets, music is too huge a part of her life to not have any music at school, and overall, it just didn't feel like a match for her.  But it was a good program, and I think would be just right for many kids.

The second school was in a very, very run down building, in the heart of the city.  It was, quite frankly, a dump.  The classrooms for autistic kids were again in the cellar, in 2 crowded rooms.  The room for the older kids, especially, was very crammed, mostly taken up by a large setup for serving sandwiches, which is the main activity for older students.  The hallways were claustrophobic, in my eyes anyway.

However, the teacher of the room full of younger students was great, just highly gifted as a teacher.  The students were doing their morning meeting, which they pretty much ran themselves.  Each student said good morning to every other student, in verbal or non-verbal ways.  They discussed the weather, said the Pledge of Allegiance and talked about current events.  The students were at widely varying levels of speech, and some that didn't appear to speak verbally went up to the board and wrote down things with perfect handwriting and understanding.  It was an impressive class to watch.

In some ways, I could see Janey at that school.  However, in a lot of ways, I couldn't.  It was sad to see how little had been done to make the school a nice place for the kids.  There seemed to be very little for the students to do when they were older (special needs students go to school until they are 22, generally)  Again, there were no electives.  I asked about kids being paid for work, and they don't have that program and seemed only a little aware of it.  It's not that I want Janey to work a paying job, but it's an example of the variation between schools.

We would not accept a placement for Janey at that school, we decided.  It was too crowded, too chaotic in the halls, and somehow just felt a little unsafe---with nothing taken away from the teachers, who were great.

And then the third school.  This one was VERY far from us.  It took us about an hour to drive there, and to get there, we had to go through several other towns than Boston, although it's in Boston---just at one extreme end of the city and we are at the other extreme end.

However, the program there was GREAT.  It's our clear choice.

They had us there pretty much at hello, as the directer giving us the tour said "First we'll show you the students and classes, and then the students will all be going to music and dance, so you can talk to the teachers".  They have music and dance!!

There were four classrooms in the program.  The students move from room to room, like regular high schoolers.  We saw many students, working at many different tasks.  In general, the students seemed to be academically much like Janey.  Many seemed to not speak verbally, or speak verbally just a little.  Some seemed to have multiple challenges, like being in wheelchairs.

The teachers all seemed very dedicated, and there were many aides.  One room at first didn't have students in it, and the teacher said they were in the greenhouse.  A greenhouse!  That made me so excited!

The students have swimming at least twice a week, and on Fridays, most students go offsite to various places.  There are various opportunities to work within the building, although again, they aren't paid---not an issue.

It's hard sometimes to say exactly why one program seems right, but this one did.  We could see Janey there, absolutely.  The fact there is music, even if it was just that alone, is a HUGE factor.  The distance---not ideal.  But Janey loves to ride the bus, and with Tony now retired, if we needed to go get her, we could (I couldn't do the drive---I just don't drive much, and not in complicated areas like needed for this drive, but Tony can!)

So---we know what our first choice will be.  I very much hope that is where Janey is placed.  If not, I think we are ready for a fight.  We've never really fought for much for Janey at school, mostly because we just haven't had to.  We've agreed with most decisions made.  And from what I've heard, usually you can get into the program we liked, partly because not everyone wants that far away location.  But with the one program possibly closing, things could change.  We are ready to be advocates.  It's not my favorite thing to do, but we've both decided that Janey WILL attend that program.

I'd be very curious to hear from others about high school decisions (or any school choice decisions).  I know most places don't have as many choices as Boston.  Growing up in a rural area, the only school choice at that time was take it or leave it.  We are lucky to have options here, but it can feel a bit nervewracking.  I wish Janey could just stay where she is, but life does keep moving.  And next year, it will be moving Janey on to high school.  Wow.