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.

How Janey would tell the bus story

The start of this school year was marked by bus issues.  The buses that Janey had assigned to her did not have aides on them, and several times, the morning bus simply drove by our house as Tony tried desperately to wave it down.  He wound up driving Janey to school those days.  The afternoon bus twice drove her home without an aide, breaking their own rule (the aide for Janey is not something we requested, but something the transportation department had said she needs) and twice relied on a school aide kindly riding with Janey so she could get home.  Knock on wood, these issues seem to be resolved, thanks to Janey's terrific principal advocating for her.  Janey is on new buses, ones with aides.

I've been struggling to explain to myself and in this blog why the whole bus issue upset me so much.  Every way I tried to write about it, I found myself reading what I wrote and thinking "Yeah, that doesn't sound like such a big deal"  Then, looking at some pictures I took today, I realized that it's a big deal to me because it was a big deal to Janey.  She loves the bus.  She loves routine.  She loves things happening the way they are supposed to happen.  And the fact that it seemed, on the surface anyway, that the bus department didn't consider it a priority to get her to school, bothered me a lot. 

Janey doesn't talk verbally that much, but she talks volumes with her behavior and her facial expressions.  Here's the story of the bus issues, translated by me.  Forgive me, Janey, if I have made mistakes!

"I am so excited to go on the school bus to school!  I love riding the bus"

"Daddy and I are waiting for the bus. It's coming!  Oh, it's not stopping.  Daddy is trying to get the bus to stop.  Why can't I go on the bus?"

"Daddy is driving me to school.  I love to ride in the car, but this isn't right.  I don't go to school in a car!  Daddy is saying goodbye and I am with my teacher, but it's all wrong.  It doesn't feel right.  I'm crying because it's not the way it's supposed to be"

Not the actual bus that didn't stop, but a photographic recreation!

It is the little things, the small inequalities, the minor, not big enough to make a big deal of issues that sometimes are the toughest.  So the transportation department originally assigned Janey to a bus that by their own rules, she couldn't take?  It's fixed now, so why does it still bother me?  Because it's a million small moments like this that add up to block Janey from being fully included.  It's not just the bus passing her by---it's all the times that the small adjustments that would allow her to ride life's bus with everyone else are not made.

Janey---"Now the bus is here!  I'm happy!  I'm going to school!"

It's the little things that make Janey part of the bigger world.  Sometimes, we have to fight for the little things.

The Long, Cold Days

Growing up in Maine, at a certain age, people seemed to have a brain subroutine that suddenly clicked into action.  When it did, they started going to Florida for the winter.  There are whole towns in Florida that are mostly populated by people from Maine.  I never really understood the urge.  I liked winter just fine.  But that subroutine must start at around age 51, because this year, it kicked in hard for me.

It's been unusually cold here.  Today is the first day above freezing since Christmas---a very long stretch for Boston.  Night after night has been below zero.  It's been windy a lot, and last Thursday we got a pretty good snowfall.  Janey went back to school after winter vacation last Wednesday, but then Thursday and Friday were snow days.  Today was a school day again, finally.

As you can guess, Janey has been having a hard time.  It's been hard for everyone, but I dare say even harder on her than most.  Janey doesn't ask a lot to be content, but she does want her days to contain certain elements---a car ride, a walk to the store, a bus ride to school in the morning on school days, predictable arrivals and departures of the people she cares about.  The cold and snow and vacation have thrown that all out the window, and it's tough.

Last Thursday night, as the storm still raged, Janey decided she needed a car ride.  She asked, over and over and over, politely and then more insistently.  In case we didn't get what she was saying, she asked other ways "Put on shoes?  Put on coat?  Music in the car?"  We tried very hard to explain that even if we had wanted to venture out in the heavy snow, our driveway was completely blocked off by the huge pile of snow the plow had left.  At one point I even took her outside after bundling her up hugely, and showed her the snow covered car.  It made no difference.  She pretty much cried herself to sleep.

On Friday, in the horribly bitter cold following the snow, Janey wanted to go to the "ice cream store", where she gets, despite the name, chips.  I tried to tell her temperatures were in the single digits, that the wind was whipping hard, that it would not be a fun walk.  I finally did give in and wrapped her up and we did the short walk---probably ill-advised, but she wore me down.

One of the toughest things has been the sudden unreliability of the school bus in the morning.  All year until now, the bus has been arriving very, very promptly at 6:15 am.  Early, but it works.  The afternoon bus is still exceptionally on time, and has a wonderful driver and aide, but the morning bus seems to have completely fallen apart.  The last 4 days there was actually school, it has just not shown up.  There is a radar app for seeing where it is, and one day, it just skipped Janey---went to all the other stops, but skipped her.  When I called the transportation number, they said the bus didn't have an aide, so it couldn't pick up Janey.  We drove her to school, found the bus, and saw the aide was on it, just fine.  Another day, the aide waited in his car by our house for the bus which again didn't show up.  He drove Tony and Janey to the school, which he probably isn't supposed to do, but we were glad he did.  Today, the bus seemed by the radar app to just completely skip all the stops except the ones right near the school.

I am not a confident driver, and driving to Janey's school is not an easy ride, especially when the streets are half filled with snow.  So Tony drove us (except the day the aide did) and he winds up going in late to work.  We have let the appropriate people know about the bus problems, but the truth is, at 6 in the morning, if the bus just doesn't come, there's not a lot that can be done that day about it. I wonder if the powers that be or the driver get how hard it is with a child like Janey.  She's outside, waiting for a bus that never comes, desperately wanting to do what she feels she is supposed to do, just get on that bus.  We wait and wait and wait, and maybe it comes or maybe it doesn't.  Luckily, Tony is still home at that hour, because keeping her from freaking out while waiting is a two person job.

I go into this in such detail because it illustrates how even fairly little things become big things when you have a child that simply doesn't understand changes in routine.  I feel like crying for Janey when I think about it.  I think the world is a very confusing place for her, and she holds onto the touchstones of the routine very closely.  She can be stoic about much of the whirling confusion, but by golly, she needs her car ride or bus ride or store walk.  It is beyond her to understand bad roads or aide requirements or buses running late that might skip kids to catch up or frigid temperatures keeping us from store walks.  Her sadness and confusion when things can't be as usual are very real and very strong feelings.

I hope it's an early spring.

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.

What I wish I could have told the mayor

There was a meeting today at Janey's school to let parents meet the mayor, and talk to him about how the budget cuts would affect our kids.  I appreciated the mayor coming to the meeting (along with a lot of his staff) and I think he's a decent guy.  But a lot of the meeting felt like politics as usual, like broad statements about the future and a vision and tough decisions and a lot of other key words that don't add up to a lot.  We each had a chance to say briefly who we were and what our thoughts were about the cuts (which in Janey's school will result basically in one extra child in each class, bringing the cap in the autism only classes from 9 to 10), but other than that, there wasn't a lot of time for discussion, and what there was, as is often the case, was dominated by a few parents.  I sat there thinking of all I wished I could say to the mayor, if I had his ear.

I'd want to tell him, to start with, that adding just one kid to a class like Janey's is a very penny wise pound foolish move.  I'd want him to understand that Janey hangs on to being able to function in a her classroom as it is now by a thread, often.  She has great teachers and great therapists and a great support staff, a caring principal---we are lucky.  It's not that they aren't doing all they can with what they have, it's more that any kind of classroom is tough for Janey, and for the other kids in the class to get the attention they need, Janey needs someone right with her most of the time.  I've never pushed for a one on one aide.  There are only 7 kids in the about 160 autistic kids at her school that have one (a statistic I learned today).  Janey should probably be among those, and I would guess one or two of those (not kids I know in any way, just a guess) are the result of better parent advocating than I do and not a greater need than Janey has.  If the class has another child, especially a child with a lot of need for supervision, that might be the tipping point where Janey is not able to learn, or not able to be controlled.  It could be a safety issue, or at the very least, a happiness for all involved issue.  I've never pushed for an outside placement, really.  I don't want one.  I want Janey to go to school where she is.  But if it ever became obvious that just wasn't working, I would do what I had to do, and that might cost the schools a lot more than what she is costing right now.

I would want the mayor to understand autism in all its forms.  He used a lot of acronyms, and he has worked with autism groups, but unless he's spent a lot of time with a variety of kids with autism, he mostly likely, in fact almost certainly, doesn't really get them.  He doesn't get the wide reaches of the spectrum, he doesn't get how inclusion doesn't work for every child, he doesn't get how even a small amount less time at school might make a huge difference at home, he doesn't get how a tiny change in routine can be a disaster.

I want the mayor to know he should listen to more than the squeaky wheel.  I think politicians sometimes operate on the assumption that people are going to complain if something is wrong.  Well, if you can't speak, you can't complain.  If you are a parent of a child with autism, and you are just barely hanging on, and you haven't slept for nights, and you have no child care whatsoever, you aren't going to go to budget meetings or rallies.  You need help, but you don't know who to ask or what to ask for.  I want him to want the best for kids like Janey, even if their parents aren't expert advocates.

More than anything, I would want the mayor to know what a great kid Janey is.  I wouldn't want him to look at statistics about a child like her and assume she isn't important.  She can't talk much, she will not go to college, she won't raise your test scores, she won't hold a job.  She is going to need help all her life.  But she is worth it.  She is beautiful, she is funny, she is interesting, she is deserving of love and services and caring and tax dollars.  She is a citizen of the fair city of Boston, as much as anyone else.  I hope the mayor, and everyone else in a position of leadership, understands that every single person, regardless of diagnosis or income or position or ability to demand, is worth caring for.