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.

Just Janey

Our Sunday morning---Janey is playing "Born to Boogie" by Hank Williams Jr. over and over on the iPod.  Tony is cooking his non-stop weekend breakfast of bacon, greens and toast.  Coffee is flowing freely.  And I am thinking that this day, this week, is a preview of the rest of our lives.

It's just Tony, Janey and me here.  William is at college, and Freddy is, amazingly, in Venice, Italy.  Thanks to the generosity of his school and his uncle, he's on a school trip through Italy for the week.  And we are getting a glimpse of the life we will most likely live until we are no longer here to live it.

It's not a bad life, right now.  Janey has been in a good mood for a few weeks now.  It's not a perfect mood---she can fly into a rage several times a day, and she is often very upset if what she asks for doesn't happen immediately.  But compared to how her moods can be, it's wonderful.  She loves to be on the go, and she and Tony spent yesterday on numerous errands, which she enjoyed very much.  I miss the boys very much, but I know they are happy, and I admit it's somehow freeing to have only one child to take care of.

But forever?  That is the part that sometimes feels very tough to think about.  There's a chance, of course, that someday Janey will be in long term care.  But I like to live in reality.  From all I read, it's very, very hard to find care for someone like Janey.  Only about 15% of autistic adults that can't live on their own have housing not with their parents, from what I've read, and most of those are adults able to function at a lot higher level than Janey.  Janey would need round the clock care.  That is expensive and rare.

From what I am told, I need to start right now working toward the goal of Janey living away from home.  The route for doing so is not something I'm ready for at this point---it would involve giving up more control of her care that I am willing to do right now.  Maybe I'm being shortsighted.  There were certainly days last late fall I was ready to do just about anything needed.  But lately, the new medication and the new behavior plan at school seem to have calmed Janey.  I can picture, if things stayed as they are right now, a life that involves Janey home with us for good

Yet even as I write this, Janey comes over to me and says "Want to snuggle?"  This means---stop whatever you are doing right now and give me undivided attention.  If I tell her to wait, she screams, hits me, freaks out.  I get her dressed, and while doing so, ask her to get me a pullup, something she easily understands and can do, and she gets hysterical at the request.  After ten minutes, I am exhausted.  But incidents like that blend into the day, and if they don't last all day, I still think of the day as a good day.  I think that is why even on a "good" day, I am tired, at the end of my rope, by the time Janey finally goes to sleep.

Life with Janey feels full of impossible choices.  Do we push all out for away from home care for Janey, even though we are unsure that is what we need right now, so we'll have a better chance in the future?  Do we resign ourselves to a future that is quite limited by Janey's needs, or do we do what we can to preserve a life that is fuller for us, but uncertain for her?  Do we gamble on our health remaining good enough to care for her long term?

There are no easy answers.  And our choices are far from unique.  Around the world, so many others are living a life like ours---with children getting old enough to start the questioning---will this be how it is forever?  Sometimes, I admit, I wish myself back to William or Freddy's age.  I wish I were in college, or on a tour of Italy, my life ahead of me.  But I am here.  I need to figure out how to make this life work for all of us.  To all of you out there facing the same questions---best of luck.

Helping Janey choose

When Janey is given a choice of two options, she almost always picks the second one mentioned.  For example, if you ask her "Do you want McDonalds or Burger King?", she'll say "Burger King", but if you switch the order around, she'll say McDonalds.  I am always looking for ways to help her choose what she really wants.  The method I've found that is easiest to use and seems to work well is the hand choosing method.  It works like this---I'll show Janey my two hands, made into fists, and assign each of them one of the choices.  I'll wave the first hand and say the first choice "McDonalds?" and wave the second hand and say the second choice "Burger King?"  Janey will then point to the hand she wants.  Sometimes she'll say the word too.  And in that situation, she doesn't just pick the second option, for some reason.  It seems like having something physical to touch leads to her making a real choice.

When I was thinking about this, I realized that it's often the case that giving Janey a physical cue works to help her understand.  Sometimes when we get home and it's time to get out of the car, Janey will just sit there.  I'm sure she knows it's time to go in the house, but it seems hard for her to get started.  I can say over and over "time to get out!  Let's go!  Time to go in the house!" and although she understands me, she ignores me.  But if I put out my hand to help her get out, she'll hop right out.  She doesn't need the physical help, she doesn't even hold onto my hand when getting out.  She just needs the physical gesture.  I've noticed I do this a lot without thinking about it.  When I want her to sit, I make a sitting motion.  When I want her attention, I tap her.  When she is not eating, I'll give her the first bite, or put the spoon to her mouth.

I don't really understand why physical prompts or objects help as they do.  I suspect it has something to do with the unique wiring of Janey's brain.  Maybe adding a second pathway to the area that needs to be activated helps.  Maybe showing the two hands emphasizes that there's a choice between two things, in a way words can't.  There is so much I don't get about how Janey thinks.  But if something works, I'll use it, whether I get it or not.