What Community Means

What does it mean to be part of the community?

I got a list of summer camps today.  There were hundreds listed.  Janey would be welcomed at none of them.

When searching for after school activities in this area, a big urban area, there are almost none that would accept Janey.  One great exception, which is not close enough to home for us to utilize it, is the Boys and Girls Club.  I wish the one with the fantastic sounding programs was not about an hour's drive from us in afternoon or evening traffic.

A younger Janey and her brother William, in front of our house

The city is full of plays, stores, concerts, museums, restaurants, movies----almost none of which I could take Janey to.

There are lots of wide open spaces around here.  Might be great for Janey---if not for the dogs off leash that run up to her, with well meaning owners saying "Oh, he won't hurt her!  He loves kids!".  Yeah, but Janey is terrified of your dogs, and that makes her unable to use yet another public place.

So, sometimes when I think about including Janey in the community, I get discouraged.  Or I laugh a bitter laugh.

This would be much harder to take if it were not for the fact that in our own little neighborhood, we have found community.

Our neighbors on both sides are wonderful people, people that delight in Janey.  When Janey screams outside, or laughs manically, or just is her own unique self, it means the world to me that I know she is accepted and understood by those living closest to us.

Anyone who has read this blog knows about Janey's love for the "ice cream store", a store that is currently a 7-11, although it's changed names a lot.  We go there almost every day.  She is always welcomed by the staff, and increasingly, by the regular customers.  I can't tell you how many little kindnesses she has been shown there.

The closest few grocery stores know Janey well, and go out of their way to make our shopping with her not only possible, but fun.  One of the workers at the local Shaw's Supermarket has a grandson with autism, and has actually given Janey presents and always gives her a hug.

Janey's new bus aide lives in our neighborhood.  She walks over every morning to ride the bus with Janey, and her sweet, kind nature makes our mornings.

We have a little bubble here, a small world where Janey is truly included in the community.  We have often noticed that she is more accepted here even by people who don't know her than she is in many places.  Our neighborhood is working class.  It's never been gentrified, and probably never will be.  It's not a fancy place.  And perhaps that's part of the reason it's accepting.  People here are not necessarily living the American Dream, defined strictly.  There seems to be more room in their worldview for those who might not be following the script of "good schools, good college, good job, nice house, good vacations, comfortable retirement".

So what does community mean?  It means a place where you are included, where you are accepted and valued and allowed to be part of the action.  We might not have a community in the sense of formal things like camps or lessons or culture, but our neighborhood has made Janey a community member, and that means so very much to us.

I wish the whole world was open to Janey.  In an ideal world, it would be.  But for now, it's good to have our own little corner of reality where Janey is part of the community.

The first week of school

Janey has finished her first week of school, and so far, pretty much so good.  The start of school is almost always a good time for her.  She has a honeymoon period every year, where I am sure her teachers think "This is the girl I've heard so much about?  She's a piece of cake!"  Things often start collapsing around mid-October.  I feel like I'm being negative to say these things, but the pattern is pretty unmistakable.  But we do enjoy these early weeks!

The bus comes around early, around 6:30.  Janey's sleep hasn't been perfect.  Last night and 2 nights ago, she woke at 3, never to go back to sleep.  It is amazing how she never seems bothered by that lack of sleep, whereas Tony and I are very much bothered by it.  She seems to wake in the same mood she went to sleep in, and she's been cheerful lately, so she wakes up cheerful and ready to start the day, oblivious to the fact it's dark out and her parents seem oddly unresponsive.

Janey's school runs a little longer this year than last, as they have added 40 minutes to the school day.  She get home on the bus around 3.  So far, she's hopped off the bus in a good mood, which is always nice.  Her first act after getting home is to fling herself on her bed, and the next is to take off her shoes and socks.  Then, she eats.  She eats and eats and eats.  She gets school breakfast and lunch, but she doesn't much like them.  We've tried sending in food, but she never eats that either, and in Boston, school food is free, so we figure she might as not eat free food as paid for food.  But she gets home hungry.  It's amazing how much that girl can put away and still stay slim.  She's gained back the weight she lost being in the hospital, but she's still quite slender, despite eating like a sailor.

The one problem so far this year was a report on Friday that she had hit the bus monitor the day before.  We think the issue was that they put her in a seat next to another kid, not by the window.  Janey loves almost any length of car or bus time, as long as it keeps moving and she can look out the window.  It's a testament to what you can get accustomed to that we didn't get really that upset about the hitting report.  I don't want her hitting anyone, but we have learned as the years go by there isn't a lot we can do to stop it.  We of course tell her over and over that she can't hit people, and she can recite that back with a voice that sounds sincere, but when the urge hits her, she hits.  The best we could do was to tell the bus people that a window seat would be best, and they listened and are now putting her by the window.  I think everyone learns after a while with Janey that it's often a lot easier to modify her surroundings than her behavior.  I feel like this summer, we finally really learned that lesson ourselves.

Janey doesn't tend to learn anything academic at school.  I have pretty much accepted that.  It's not for lack of trying, and of course, who knows what she is picking up and not showing that she is?  If she is happy at school, the truth is I honestly don't care if she learns academics.  What I do care is if she is frustrated trying to learn things she just can't learn.  I have more doubts about ABA all the time, in Janey's particular case.   I don't think it's worked for her, in just looking at what programs she was being taught at the age of 4 and now at 11.  They aren't much different.  She is not motivated by ABA, or by any rewards she is given by it.  If she wants to know how to do something, she learns it near instantly.  I showed her only once or twice how to push the "3" on the TV remote to get it on the right channel for videos.  She shows no sign of knowing which numeral is which under normal circumstances, but boy, does she know that 3.  She knows which song is on which CD in the car, and what order they are in, and the lyrics and tune for every song, I truly think, that she has ever heard.  Those are the things she cares about.  I wish I could make her care about learning to read, or, as I sometimes suspect, make her show that she already CAN read, but, and I am seeing a theme here, you can't make Janey do a lot she doesn't want to do.

So, another school year has started.  It's strange, with Janey the only child home, but otherwise, it feels pretty familiar.  My main hope for the year is no hospitalizations of any kind---that Janey can attend school all year without interruption.  I think that's a reasonable goal.  As the years go by, we become more rooted in reality.  Acceptance isn't just a catch word, it's the only real way to stay sane, I think.  We accept that Janey is who she is.  We try to respect who she is, and work with who she is.  Like with any child, we rejoice in parts of her personality and despair of others.  Trying to change a child, a person, any child, any person, is an exercise in futility.  That's the biggest piece of knowledge being a parent of three very different, very intense, and very cool kids has taught me.  Work with what you have, and love them as they are.