"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.

A full life vs. the trifecta

It's the doldrums of winter.  It's hard for everyone, but I'm realizing that it's harder for Janey than most.  I think the next big challenge we are facing is how to give her an interesting life, a meaningful life, a full life.

I think about myself at age 11, or my sons at that age.  Life gets pretty interesting around that time.  You are old enough to have your own interests and passions.  You have made friends---friends that might become lifelong friends.  You go to their houses and they come to yours.  You are starting to be able to be out in the world by yourself.  You are turning into the person you will be for life.

Then I think about Janey's life at 11.  She goes to school.  She comes home.  That's about it.

There are many, many barriers to giving Janey a more meaningful life.  The big one is that she has the trifecta of autism, severe intellectual disability and behavioral issues.  Any one of those alone is tough enough, but the three together cause barriers to almost any organized type activity we might want to pursue for her.  I can't tell you how many times I've heard about a new possible class or program or camp or so on that might work for Janey, only to look into the details and find that it would be impossible, due to one or more of her challenges.  Saturday special needs city programming?  You have to be able to be in groups of 4 kids to 1 adult.  Music lessons for kids with autism?  You have to already know how to play an instrument and have to be able to read music.  So, so many camps?  You have to be toilet trained.  You have to have no self-injurious behaviors.  Hundreds more promising sounding enrichment activities that are "inclusive"?  Inclusive if your child can follow directions, not run away, read, write, not need constant supervision.  Respite houses for the disabled?  Not for kids that need one on one care.

So I say---okay.  We'll do it ourselves.  We will enrich Janey's life.  During recent snow days, I woke with a determination to give Janey an interesting day, a full day.  And every attempt to interest her in anything other than videos was met by screaming, by her biting her arm, by fury, or if not fury, complete disinterest.  I tried---reading books, playing with toys, involving her in cooking, putting on a children's yoga video, taking her out in the snow---I tried everything I could think of.  Janey was not interested.  Part of this, I think, is that in some deep ways, she's a regular pre-teen.  I'm her mother.  I'm not who she wants to hang out with.  And part of it is the combination of the trifecta.  The autism makes her not that interested in new activities.  The intellectual disability makes it hard for her to understand so much---how to use toys, how to hold a writing utensil, how to understand what is read to her.  And her behavioral issues make her prone to lashing out when the first two kick in.  I try to put myself in her shoes.  What is someone tried to get me to do something that I am not interested in and didn't understand?  What if someone proposed a fun day of doing calculus equations?  I'd be lashing out pretty quickly, and I don't have behavioral issues.

So what do we do?  I don't know.  We do what we can.  Janey's favorite activity is going for car rides while listening to music.  She adores doing that, and we do it as much as we can.  Tony takes Janey on many, many car rides to nowhere, with mix CD playing.  It's wonderful to see Janey during these rides.  She has strong opinions about music.  She doesn't like everything, but what she does like, she loves.  We put a lot of time into finding her new music she might like, and it's time we all enjoy.  But we can't always ride in the car.  I put a video of Janey on my Facebook companion page (I can't figure out how to put it here, but you can see it there if you want) asking for a car ride last night.  It was one of the rare times Tony had to say no---he was exhausted and the car was covered with snow. After the part shown in the video, Janey frantically paced back and forth asking to put her coat on and go in the car---for an hour, until she went to sleep.  It broke our hearts.

I don't have answers here.  I don't know exactly how this problem can be fixed.  But I must keep trying.  Janey needs a full life.  I owe it to her to find a way to give her one.