With love to the school I didn't want

Today is Janey's last day of 8th grade, the last day at the school she's attended since the middle of 3rd grade.  And I am looking back with love on her years at a school I didn't want her to go to.

Janey and her classmates

Until late in 3rd grade, Janey went to an inclusion school.  It was the same school William and Freddy went to, and it was a special place.  Each classroom had a regular ed teacher as well as a special ed teacher.  Kids with all kinds of special needs were included, completely. I loved the school, and I loved the concept.  I loved everything about it, right up until they couldn't include Janey any more.

Janey getting her diploma!

The time of transition to the school Janey is attending her last day of today was very, very hard for us.  It was the time I found out that the phrase "crying yourself to sleep" can be literal.  I had pictured Janey at the inclusion school until she was 22.  I had been involved with the school for 13 years at that point, and I wanted it to be 13 more.  But I know now that it was the right decision to move her.  Inclusion is wonderful, but it doesn't work for all kids.  At the time Janey was moved, she was often screaming all day, lashing out, pulling hair, biting.  She had the love and support of her classmates and teachers, but she was far from happy, and she was (although I know you aren't supposed to worry about this, but I do) keeping the other kids from learning.  She wasn't included, because it wasn't safe to include her, and so an inclusion school for her was not at all inclusive.

So we moved her to her current school.  It was hard.  But from the very first day, we were made to feel welcome there.  It was a different feel of school.  It's a much bigger school, less family-feeling, but it was a place that accepted Janey, and embraced her.

Help when she needs it

Janey's early years at her new school were not smooth ones.  I've never, ever forget the call---the day her behavior was so extreme that she went right from school to the emergency room, and then to many days at a psychiatric facility.  But I'll also never forget the love and caring the school showed her at that time---how her teacher rode in the ambulance with me, how the ABA director drove the long drive to where Janey was placed to see her and talk to the staff, and most of all, how the school welcomed her back.  That is, I can see now, what scared me most.  Janey had already been once cast out for being simply too...autistic.  I was braced for it to happen again, for the school to say they simply couldn't handle her.  But they seemed surprised I would even ever think that.  They were committed to Janey.

Music bonded these two!

Over the years at Janey's school, we have had so many teachers that were simply amazing, in their dedication, skill and love.  Beyond that, the staff---the classroom paraprofessionals, the therapists, the program leaders, the principal---wow. They are all people who have chosen to work with autistic kids, and beyond that, people that very obviously love our kids, people that get them, people that see them as the coolest, most interesting kids around (which they are).

Another wonderful friend of Janey's

Love and a bond you can see

We went last week to Janey's moving up ceremony.  I can't even tell you how many different people made a point to talk to me about Janey, about the special routines they had with her, about her love of music, about what a kick they get out of her.  It struck me so much how they were talking to me about the same Janey I see---a cool, quirky, at times stubborn and challenging but unique young woman.

And so today, again I am crying a bit about Janey and her school.  This time, it's not about her being sent there, but about her leaving.  Thank you from the bottom of my heart to the Joseph Lee School for caring for and loving my Janey.

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.

Luck and Joy

Janey's annual IEP was last week.  For some reason, I was feeling edgy about it.  I don't know why.  It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address. 

When the meeting was over, I realized what I think had been getting me worked up.  It was the feeling that somehow I SHOULD have something big to insist on or ask for.  And I didn't.  We left the meeting extremely pleased with all we had heard.  We are so lucky.  Everyone there is truly on Janey's team, not just in name but in reality.  They love Janey.  They get a kick out of her.  They see her as an interesting and valued person.  And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.

A joyful reunion

One great piece of news from the meeting is that Janey's teacher will have her again next year.  7th and 8th grade at her school works that way, I found out.  I adore Janey's teacher.  She is absolutely wonderful.  I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is.  The OT at the meeting was terrific too.  One thing she said that really stuck with me was that she laughs 10 times during a session with Janey.  I love that attitude.  Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.

It was a very nice weekend last weekend.  Freddy was home all last week from college.  Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this!  I can't believe this!"  I could tell by the sound of his voice that something very unusual had happened.  He sounded shocked---almost scared.  I jumped up and saw, coming through our door, my older son William!  He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise!  He wanted to give us a shock, and he did!  He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.

That night, we ordered takeout, and were all eating it together in the living room.  It struck me something seemed different, a little off.  And then I realized what it was---Janey was just sitting and eating and being part of the crowd.  She wasn't crying, she wasn't making demands, she wasn't needing extra attention.  We were just chowing down as a family like we love to do.  It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.

I wonder often---if someone was viewing us from outside, how would they see things?  I know, in reality, there are still many, many times in an average weekend that Janey gets very upset.  There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on.  When I look back on a weekend, though, those times sort of get edited out now.  I think we can do that because unlike in the past, they don't last for long.  She gets upset, we deal with it one way or another, she settles down and it's fine.  It's a combination of things.  We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.

Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older.  I think a lot of it is acceptance.  If I put things in a negative way, I could say it's also giving up on certain things.  We don't feel much sadness or despair over what Janey can't do, most of the time.  She is who she is.  We don't expect her to never get upset, never scream or cry or bite her arm.  We know those times are part of her, just like the times she dances and sings and laughs.

As William was getting ready to go home yesterday, he remarked on Janey.  He said "You know, overall lately she's a joy"  You should have seen her when she saw William at first.  She was overcome with happiness to see her big brother.  At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat.  William has been here for all of it.  Hearing him say that---it meant a lot.  Freddy said similar things too.  She is lucky to have the brothers she has, and they are lucky to have her.  And we are lucky to have all three of them.

What I can't stand about the mother in "Speechless"

I've only watched the first two episodes of "Speechless", and I don't plan on watching any more. I'm glad that TV is showing someone like the son on the show, in a wheelchair and without verbal speech.  That's not my issue with the show, although I do wish sometimes they'd show someone with trouble communicating that went beyond verbal speech.  The boy on the show has a lot to say and communicates very well, and of course is also funny and sassy and outgoing and so forth.  And there are kids like him---great kids that I've met, very bright kids and adults in wheelchairs that deserve to be seen as the cool people they are.  My issue with the show is the mother.

If you have a child with a disability, there's pretty much only one personality you can ever have if you are being portrayed on TV or in a movie.  You must be a tireless, relentless, fierce, single-minded, aggressive, angry and over the top advocate for your child.  You must be ready to put everything else in your life on a back burner, including your marriage, any other children you might have, your friends, your hobbies---all of it---in order to devote every single second toward the child with a disability.  You are supposed to fight everyone and everything in order to get the best life for your child.  Everything and everybody except your child is a potential roadblock, and you must be ready to mow them down to get what your child needs.  The result will be, of course, that by the end of the movie or run of the TV show, your child will either be "cured" or will be living the best possible life they can---of course doing things that experts said they could never do, of course surprising everyone with how far they have come, of course making you proud and making it clear that the ends justified the means.  The mother on "Speechless" is that kind of mother.

In real life, somehow it must be that mistakes are made here and there when handing out children with disabilities.  Sometimes, instead of the fierce mother they are supposed to get, they get someone like me, someone who avoids confrontation if at all possible, who is not comfortable demanding anything, who regularly takes her eye off the prize and doesn't follow through with every chance to "fix" her child, who is in fact often not even exactly sure what it is she should be fighting for, if she were inclined to fight.

When talking to a friend about my feelings toward "Speechless" and how I didn't find the mold of the fierce mother, she asked me "Well, what is it you think Janey didn't get because you aren't that way?"  That was an excellent question, and the answer was...really nothing.  Of course occasionally I do wish there were programs for Janey that don't exist, but in terms of what she really needs, she has always gotten it.  I am very lucky that way.  I have to thank the Boston public schools for that.  I've had nothing but excellent teachers for her, nothing but caring administrators, aides, therapists, ABA workers, bus drivers...I've been incredibly lucky.  I can't quite say that's been the case with medical issues, but with the schools, I've somehow been able to get by without ever once having a screaming match at a meeting, or even anything close.

Of course, I do know that I've got some advantages.  I speak English, I'm fairly good at understanding the system, I am able to attend meetings without fear of losing a job, I have transportation, I can read---I don't take any of that for granted.  I know and have met mothers that care for their children every bit as much as I do, but because of various issues, can't work within the system as I do.  I think about Tony's mother a lot.  If she had had a child with autism, she wouldn't have known where to start.  She spoke very little English, she didn't drive, she didn't understand the US school system---she would have been lost.

In an ideal world, everyone would have had the great experience I've had with their child's schools.  We don't live in an ideal world.  I know part of why I am able to not be the fierce mother is because of the work of fierce mothers that came before me, that demanded their children get an education at all.  I respect that very much.  However, I think the media has something to answer to in putting out there a stereotype of a fierce mother.  I think it leaves many parents ready for fights that don't have to happen.  It also gives a huge advantage to those with the means and skills and money to hire people to fight for them---lawyers or advocates or the like.  It's why recent investigations in Massachusetts showed a huge gap between what kind of services kids in rich vs. poor school systems get.

My strong feeling is that schools and parents should be a team, working together to give children what they need.  I'm extremely lucky that is what I have experienced.  But if I relied solely on the media to get an idea how I should view the school/home relationship, I'd see it as a battle with the school on one side and me on the other.  And because of this, I think sometimes schools are expecting every mother to be ready to fight that battle.  They might be waiting for demands from parents, and many parents are ready to make those demands.  I feel in many cases, that is how resources are handed out---by seeing who demands them.  That infuriates me.  It makes me sick, really.  What about the parents who don't demand---because that isn't their nature, or because they simply have barriers to understanding what they even COULD demand?  It is horrifying to me to think that their children might not get what they need while the children of those who know how to play the system do.

I'd love to see a TV show where special educators and parents work together, where the incredible dedication and hard work and love of both are shown.  I'd like to see a mother I could relate to in the media, a mother who isn't fierce but still fiercely loves their child.  I'd like to see some teachers and therapists like the ones I've known, like the ones I met with today at Janey's school, who care about my child deeply, who provide her with the best education they can (and provide me with the respite school gives me).  I'd like to see a child on TV with Janey's kind of speechlessness.  Until then, I'll avoid one-dimensional portrayals of special needs mothers.