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.

"Want to go away?"

Janey is 13, a teenager. Most of the time, her age doesn't make a huge difference.  She doesn't operate in most ways like a teenager, not in terms of what kind of help she needs, what kind of interests she has, what she learns in school or does outside school.  But there are parts of being a teenager that come through anyway, and it's quite something to see.

My teenager

The big one?  That she doesn't always want me around.  That shocked me when it happened.  For so many years, it wasn't just that I had to be near Janey for safety, but that she wanted me near her.  I couldn't really picture her wanting it otherwise.  It wasn't that she was particularly clingy, but just that she didn't seem to have a concept of me as someone separate from her.  I helped her do what she wanted to do.  I was just sort of part of the scenery.  But now...

This week is school vacation here.  Yesterday, we didn't have much to do.  We went to the store in the morning, we did a little time outside as it was nice out, but mainly, Janey wanted to watch videos.  And she wanted to watch them without me in the room.  The phrase I heard the most often yesterday was "Want to go away?"  Slight variations at times---"Want to go in that room?" or the non-verbal push out of the room.  I got the message.  She didn't want me there cramping her style.

It's hard for Janey, I am sure, as she isn't usually quite able to put on the shows she wants herself.  I've tried very hard to teach her to use the Amazon Fire TV remote.  That is where most of her shows are, in their interface, which is a fairly complex mix of various streaming services and also shows we have purchased for her to watch on demand.  I think Janey could learn it, though.  She uses the iPad with such ease it's amazing.  She knows how to move around programs and minimize them and start thing with gestures that I don't know at all.  But we aren't quite there yet with the TV.  So Janey needs to ask me constantly to put on the shows she wants.  We use an improvised sign language to pick episodes---I scroll and she points in the direction she wants me to scroll, and then points to herself when the episode she wants comes up.  There are pictures with episodes, but I do think there's a little reading going on too.  So even though Janey wants to be alone, she needs to come get me often to put shows on, as she likes to change shows constantly.

Yesterday she tried hard to be independent by watching VHS tapes.  She knows how to put those in and take them out, and she is remarkable at finding the one she wants from the huge box we have.  We've long ago lost all the covers, but she can tell which is which, from symbols or fonts or sometimes, it has to be, just plain reading.  However, she has not grasped rewinding.  She hates rewinding.  Most of the tapes are at the ends, because it's only if she REALLY wants a show she will tolerate me rewinding the tape.  Usually, after about 10 seconds, she stops me and hopes somehow the rewinding has happened extra fast.  But even with those challenges, I could see how happy she was puttering around finding tapes and putting them in.

Of course, even when Janey tells me to go away, I can't go far.  She needs me often to come back, and she really can't be left alone.  I go into the next room, and keep a sharp ear open.  I jump up if I sense there's anything I need to see---food being strewn around, a need for toileting help, anything like that.  But I'm out of direct sight, and that makes Janey very happy.

In some ways, it would be easier if Janey was not developing the typical teenage need for parents to not always be in her face.  The problem is that I can't see a future where she can have much independence except as we do it now---in the next room.  There are little, little things we can do.  We hold her hand less now---she is not a runner and she stays close to us, so that's possible.  In stores, we keep her in close sight but do sometimes let her walk away from us down an aisle to get what she wants---something she loves to do.  As long as we can see her, it's okay.  And she goes to school, of course---and she is horrified if I mention something her teacher told me happened at school.  She likes it to be her own world.

How do I respect Janey's need to grow up, to be her own person?  How does that work when it's just not ever going to be safe for her to really spread her wings?  I hope we can find a way to sometimes do what she so firmly asks us for---"Want to go away?"

Every Morning is a Triumph

I just got Janey on the bus, at 6:15 am.  As I walked in the house, I was beating myself up a bit.  Her hair wasn't as I'd like it, she had sneaked some onion and garlic chips and her breath betrayed that, she had on two different gloves, her hastily picked clothes were not the greatest look for her...it was not my finest early morning parenting day.  But then I defiantly told myself---NO.  Getting her on that bus at that hour was a triumph.  It was the kind of triumph all you parents of other kids like Janey have every day.

It was a triumph Janey got a full night's sleep, and woke up without protest.  Sleep is not something any of us take for granted.

It was a triumph that I got Janey dressed.  I felt guilty thinking how I should be insisting on her dressing herself more in the mornings.  But doing so would necessitate getting up about an hour earlier.  We are on a very tight schedule every morning, and I'll take her cooperation over her independence when it comes to quick dressing any day.

It was a triumph I did her hair at all.  I know there are a few tangles.  I hate that.  But as I worked to brush them out, Janey screamed and had the look in her eyes that let me know that if I kept going, there was no way on earth we'd be getting on that bus.  So I resolved to brush them out before bed tonight, and I did my unskillful braid hairdo, and we called it good enough.

It was a triumph I brushed Janey's teeth well---twice.  She allows a thorough brushing without complaining.  The second thorough brushing came after she found the chips while I rushed to get dressed myself.  I think she might still have a little onion and garlic breath, but so be it. I am glad Janey eats breakfast at school, but a little chip appetizer isn't a huge deal.

It was a triumph that Janey left the house with a coat, a hat, a scarf and gloves.  The gloves were two totally different gloves, both right hand ones.  They are approximately the 30th pair of gloves she's had this winter.  She doesn't keep track of things like gloves or scarves.  If I were to buy her a matching set every time an old set disappeared, our entire budget would be spent on gloves and scarves.  So finding two to put on is a win, a triumph.

It was a triumph we were on the sidewalk two minutes before the bus arrived, and Janey was happy.  I had to grab my phone at the last minute so I could put on the SpongeBob songs she currently needs while waiting.  If the connection had been down or if I hadn't been able to immediately locate my phone, we would have had a problem, to say the least.

It was a triumph she got on the bus on her own, and sat in a different seat than usual, as I saw the aide tell her to.  She is like Sheldon on "The Big Bang Theory"---she doesn't care for being made to sit in the wrong place.  But she did, without protest.

It is a triumph that she is off to school.

I think those who teach kids with autism understand the triumphs that every successful morning include.  To anyone else out there who might not, when you see Janey, hair not looking perfect, gloves unmatched, hint of chips on her face, when you see that, keep in mind the triumphs it took to get through the morning.  To the other parents like myself---here's a coffee toast to you. May you have many, many small triumphs today.

The Pepsi Challenge of unlocking Janey's knowledge

The other day, Janey and I were at her favorite after school place, the "ice cream store", which has been various chains and is now a 7-11.  She wanted soda, and I took a diet Coke out of the cooler.  She usually drinks just a sip or two and then Tony has the rest, and he is diabetic, so we get diet.  I hate diet soda, and I try to avoid corn syrup, so I don't drink regular soda usually (and of course all soda is unhealthy and we shouldn't have it and all that...but anyway...)  As we walked toward the register to pay, Janey yelled out "NO!"  When I asked her what was wrong, she grabbed the soda from my hands and said "No!  PEPSI!"

Janey looking ready to take on the world

Well, that was a huge surprise.  I don't think we've ever used the word Pepsi at home.  Not that we are opposed to Pepsi, but we just call soda "soda".  I had no idea, no idea on earth, that Janey would have the slightest idea there is a difference between Pepsi and Coke, or in fact even that there is a difference between store brand soda and brand name soda.

We went back to the cooler and I got a diet Pepsi out.  Then Janey surprised me again.  She said "NO!" and put back the diet Pepsi and got out a regular Pepsi.  Again, I was stunned. I had no idea she knew there was a difference between diet and regular soda.  So we bought the regular Pepsi, Janey had her usual few sips, and that was that.

I've been thinking a lot about this.  Janey doesn't often tip her hand and let us know what she knows.  Weeks or even months can go by without her saying a single new word, or doing anything really new.  But it's up there, stored in her brain.

When I got Janey's progress reports from school last Friday, there were surprises there too.  In OT, she has been typing the letters of handwritten words into the computer, to get the YouTube video she wants.  I was shocked she was able to do that, to match up written letters with keyboard letters.  The report said at first she typed each letter multiple times, but now she was learning to just hit each one once.  She has also been identifying classmates using TouchChat, an assisted communication program.  I didn't know she knew her classmates apart, to say nothing of being able to pick out certain ones.  At home, she often has trouble giving the right names to her two brothers even.

The problem with knowing that Janey has knowledge she doesn't let on she has is that there isn't always, or even often, a way to get at that hidden knowledge.  It's not very transferable from one context to another.  Like the thousands of songs I know that Janey knows by heart, the knowledge is stored in her brain but comes out only when she wishes it to, when the moment is just right.

Sometimes, though, I think Janey wants to access brain files and she can't, or she can't translate what she wants into speech.  The other day, she came home singing a tune I didn't recognize.  Then she wanted a video, and kept saying names of videos and then getting upset when I actually put them on.  Finally, after a long run of this, by chance she saw the icon for "Yo Gabba Gabba".  I read through the names of all the episodes, and she stopped me at one.  I put it on, she smiled a huge smile and in a minute I heard the tune she'd come home singing.

I was almost in tears thinking how it must all feel.  She knew exactly what she wanted, but the words didn't come.  I didn't remember the tune, and she couldn't think of "Yo Gabba Gabba", or couldn't get her mouth to say the words.  I'm glad we figured it out, but how often does this happen to her?  I know how I feel when something is at the tip of my tongue and I can't quite access what it is.  That's a very, very frustrating feeling.  What if I felt that all the time?

William and Freddy always picked Coke...

I wish I knew how to better help Janey say what she wants to say.  I am sure that much of the time when she acts out and I don't know why, it's from not being able to communicate.  I need to keep in mind the Pepsi incident, and try harder to give Janey a way to have her say, to get her non-diet Pepsi.  It's my personal Pepsi Challenge.