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.

The Dance!

Last Thursday night, Janey's school had a dance for the junior high school students.  Her teacher encouraged me to take Janey to it, and I decided to.  If there is anything in this world Janey enjoys doing, it's dancing.  It combines jumping around and music and laughing, all favorites of her.  And she's good at it.  She picks up moves from watching dancers on TV, or just figures them out on her own.  She's approximately 1000% better a dancer than I ever was.

Janey and her wonderful teacher at the dance

I tried to dress Janey up more for the dance, but she knew what she wanted.  She was happy to wear a dress (the one she wanted was probably too short for school, but she let me put a skirt under it), but she drew the line at fancy shoes.  She wanted her old, dirty Crocs, and I gave in.  I tried to get her to wear a necklace, and put all kinds of them on her to try, but she wasn't interested.  The aide at school that does Janey's hair much better than I can almost every day did a nice 'do for her, and Janey left part of it in at home after school, but she won't let me put in any fancy barrettes or anything.  So---basically she was like most teens would be when their mother tried to tell them what to wear.

Tony and I got Janey to the dance right on time, and found that most of her class was already there too!  That was great.  A girl in Janey's class greeted her, looking lovely, and it was a lot of fun once we got into the gym to see other of her classmates all dressed up.  This dance was for all the junior high kids, not just those with autism, and gradually more of the regular ed kids came too.  They had a supper, one that usually Janey would love (pizza, chips and soda!) but Janey was not in the mood to eat.  She was in the mood to DANCE!  She danced from the second we got in the room.

Tony and I had pretty much decided to sit on the sidelines and be ready to get Janey if she got ready to go.  The dance was from 6-8:30, and Janey generally goes to bed around 7 or 7:30, so we weren't sure how long she'd last.  But Janey came up to us after only about 20 minutes and said "Want to go away?"---pushing me toward the door.  I got the message loud and clear---we were cramping her style.  I don't know if she noticed the other kids mostly didn't have parents with them, or if it was just her usual dislike of her separate worlds of school and home mixing.  I asked her teacher if it was okay for us to go sit in our car in the parking lot, where she could text us as soon as Janey had had enough, and she said sure.  I adore her teacher!  She is so upbeat and looked so happy to just be there with her students.  Special ed teachers are some of the most amazing people on this earth.

Janey joyfully dancing!

Tony and I barely knew what to do alone in the car.  We played with our phones, talked, napped and marveled at the time going by without a call.  Finally, at around 8, Tony went in to get Janey or at least see how she was going.  Just as he got out, I got a text from her teacher that she was ready to go.  She had danced for 2 hours straight, and Tony said they told her that she got upset at one point when the DJ took a break, so they had to put on some more music!  She was so happy in the car going home, and she certainly slept well!

The dance is a perfect example of the kind of inclusion I wish there was much, much more of.  It's a "regular" event, something kids of Janey's age do, and including Janey and her classmates did involve I'm sure some extra supervision and planning, but it worked.  I think many more events could be make accessible like this one.  If Janey had someone to keep an eye on her and give her a break when she needed it, she could do many things---go to camp, go in the city and hang out, go to concerts, be part of teams---lots of things.  And I think it would cost less money and resources than it would to set up "special needs" events. It would benefit kids like Janey, and it would benefit the other kids, in seeing that Janey and others like her are not that different than them. 

You might say---why don't we as parents just take her to all those things?  Well, a couple reasons.  One, Janey showed herself at the dance.  When you were in your teens, would you have wanted your parents with you at all times?  Unless you are quite unusual, probably not.  And...we are tired.  Every single moment that Janey isn't in school, she is with us.  Always.  Tony and I getting to just sit in that car---it's the most time we've had alone in a LONG time.

Thank you to Janey's school for holding the dance, to her teacher and her aides for being there, and to Janey---for delighting us with her dancing, her enthusiasm and her joy.

"Participate effectively and maintain a safe environment"

I took Janey to a parade yesterday, along with my friend Maryellen.  I don't think Janey has been to a parade since she was three or so.  Overall, she loved it.  Parades pretty much have Janey's favorite features---music, dancing, being outdoors and able to move around and be loud if desired, all that.

For me, a few parts of the day were bittersweet.  A dance troupe played a huge part in the parade, a troupe from a big local dance studio.  I'm not a dance person, but I am pretty sure if Janey had followed a more typical course in life, she'd have been involved in dance.  She's amazing, in that she instantly copied every dance style she saw during the parade and did her own dance at the side of the street.  She got many smiles and waves with her high enthusiasm and her moves.  It was something watching her, doing something I couldn't do for the life of me.  As I watched the literally hundreds of young girl dancers go by, I kept thinking "Why isn't there a place for Janey among them?"  I found a list of dance programs in the Boston area for kids with autism.  I'm glad there are some, but like I've found so often, they aren't for Janey.  Here's what one of them said is a requirement for participating--- "Students must be able to participate effectively in lessons or classes and maintain an environment that is safe for themselves and others."  Yeah.  Janey isn't going to participate "effectively".  She would probably not "maintain" the environment they are looking for.  She would love the class, she would probably learn, but as several of the five for so programs explicitly said, they are looking for "high functioning autism" kids.  And sometimes, I get mad about that.  They have every right to accept who they want to, but damn it, I wish there were programs that said something like "We will work with children at any level of functioning, if they have a love of dance"

I felt encouraged by much of Janey's behavior during the parade.  She's still been in a bit of a manic phase, and the weekend was trying at points, with her often going over the top from excitement to anger and screaming.  But a few years ago, I would not even have attempted something like this parade, even with the wonderful help of Maryellen.  As we walked toward the parade route, Janey ran ahead of me a bit, and I felt so happy she is able to do that now, and I know she will stop when I shout out to her to do so.  She's able to have that little bit of independence, which is a very nice thing for a 12 year old.  She stayed with us at the parade without having to have her hand held, and she seemed to understand that she needed to not go into the street where the parade people were.

There was one moment, though, when I was quickly reminded that I need to always be on guard with Janey.  Maryellen had an umbrella, as it was drizzling.  Janey wanted to hold it, and we think to twirl it on the ground.  Before either of us completely realized what was happening, she moved close to a couple small children and started wildly flinging the umbrella around.  It could have very easily poked and hurt the kids.  We grabbed it, apologized and folded it up.  But she is so fast that it's scary.  Sometimes I'm almost lulled into relaxing for a minute when we are out and about, and I just can't.

Janey watching the parade is in many ways a metaphor for what increasingly frustrates me about life for a child like her.  She can watch, she can enjoy, but she can't really participate.  She dances on the sidelines.  And even on the sidelines, I can for a few minutes just feel like she's any other parade watcher, but if I let my guard down, things can suddenly turn.  I can't ever relax.

Because I am always arguing back and forth with myself, I'm of course thinking "She doesn't know she isn't participating.  She is happy dancing on the side."  And that's true.  Fine.  But imagine Janey belonged to almost any other distinctive group of kids.  And imagine that the group she belonged to was a group simply not welcome, not included, in basically everything.  In the past, we might have said "That's just the way it is.  It's too hard to include that kind of kid.  They don't need to be included to be happy."  Well, sometimes I have a radical idea that Janey SHOULD be able to be included in ANYTHING that other kids are included in.  Or at the very least, if there is an activity that is said to be for kids with special needs, or even specifically autism, that it should include ALL kids with autism.  Sure, it would take some doing.  But why not?  Why can't it be that way?

I do live in the real world.  I think often of Janey's old school, which tried harder than anyplace to live that dream of including all kids, and in the end, wasn't able to do that for Janey.  And thinking about that, even after several years, can make me cry.  I don't have solutions, or answers, really.  I accept, at many levels, that in the real world the challenges of Janey's behavior do leave her out of the mainstream.  But sometimes, I dream of a world where she's truly and totally included.

Our school goals for Janey

Lately, for various reasons, I've been thinking a great deal about what my goals are for Janey's schooling.  In thinking about them, some are much like everyone's goals for their children, and some are quite different.  It's been an interesting thought process working them out.  I thought I'd post them here, and see if anyone has any thoughts or ideas about them.  If you do, I'd love to hear them!

Our goals for Janey

1. We want Janey to be happy, as much as is possible.
2. We want Janey to be safe, physically and emotionally.
3. We want Janey to learn to the extent she is able to learn
4. We want Janey to be around people who love her and understand her.
5. We want Janey to be part of a community of all different people, not just those with autism. We want her to be around typical kids and adults as well as others with disabilities.
6. We want Janey to be exposed to as much music and dance as possible, for we feel those are her strongest areas.
7. We want Janey to have consistency in her life---to be at a school that she will be able to continue at for many years. We want to minimize transitions in her life.
8. We want others to get to know Janey, in order to enrich her life and theirs. We want to give other children a realistic and true view of autism.
9. We want Janey to be able to experience as many of the normal parts of childhood as she can---holiday celebrations, school programs, classroom jokes and drama and community, playground time, all the parts of public school that we look back on as adults fondly.
10. We want Janey to know she is valued for just who she is.

Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!