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.

"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.

The parts of life Janey will be spared

I'll never be paternalistic enough to say I am glad that there are parts of life Janey is lucky to miss.  It's not lucky to not get to experience all life has to offer.  However, there are trade-offs involved in not really being aware to a large extent of the world around you.  There are pains that Janey probably won't feel in life.  No mother wants pain for their children, of any kind, although they are part of a full life.  So in a tiny way, I'm glad that she is unaware enough so that while she can't totally participate in many of life's events, she also doesn't have to feel some of the deep pains life brings.

What made me think of all this is the election.  I am not very political, but my older son is.  He was thrilled to vote for the first time, and quite happy with the results, but that will not always be the case in his life.  He will feel the frustration and sadness that the world doesn't share his deeply held views.  Janey has no awareness of politics in any way.  Last night I was trying to get her to say "Barack Obama" and "Mitt Romney", why I am not sure, just because those names were out there a lot.  She tried a little, but I realized it was a silly game.  She doesn't know they are people, she doesn't care.

Then there's the social world of girls.  Girls are cruel, often.  I know that.  I was a girl.  Girls are far crueler than boys mentally.  Freddy has seen that, and is shocked sometimes at what the girls around him do to each other.  I think about 7th grade, for every girl out there.  It's hell.  You are judged on every word you say, every action you take, and there are always mean girls, waiting to take you down.  Even if you are one of the mean girls, you know you sit uneasily on the throne, and your ladies in waiting might turn on you at any point.  It's a scary, scarring social order.  Janey won't have that.  If she is teased or excluded, she won't notice.  If she is ignored, she won't care.  She lives in her own world, which is apart from that intricate and often cruel world of girl friendships and enemies.

Janey is sad a lot, of course, but I would not say she's ever worried.  Worry has consumed huge parts of my own life, but worry takes awareness of the future, which Janey has very little of.  She vaguely knows we go to school each day, that sleep follows being awake, that there is supper and then dessert, or hairbrushing and hairbrushing being over.  But she doesn't lie awake nights worrying.  She doesn't have the brain setup to do so.  She might be scared, in the moment, or sad, or angry, but worry?  No.

Most all of us have things we want.  I want a computer that would run a game I wish I could play, a better house, money to not worry about bills, a car that I know will last a while.  The boys want better guitars, more video game systems, snazzier clothes.  Tony wants a Kindle, a Fiat, a pinball machine.  There aren't consuming wants, and we know we won't get a lot of these things, but the wanting of material things is a part of our life.  Janey doesn't have that.  She is not aware of the world of items out there she could want.  At times I've taken her to a toy store, and offered to get her a toy.  She doesn't get that.  She doesn't see things and think "If only I could have that!"  She is free from that kind of wanting.

In a second, I would reverse all this if I could.  I would give Janey the painful, regular life most of us lead.  It's worth it---I know that.  But I can't reverse it, and so, at times, I do think that there are compensations.  Maybe I have to think that, to keep from despair.  But be that as it may, I think of a life without worry, without coveting, without teasing or exclusion, without politics.  It's hard for me to picture, but it's Janey's life, for better or worse.