The summer starts now

When the boys were little, as we pulled into the driveway coming home from the last day of school, I'd always say "The summer starts...NOW!"  I'll say that to Janey as she gets off the bus this afternoon.  Her summer is starting.

Marshall Point Light, in the town I grew up in
in Maine.  Even with surroundings like this,
I still hated summer and I still do.

It's going to be a different summer than usual.  I'm not sending her to summer school this one year.  Last year, summer school was basically a disaster.  Her teacher was not a good match for Janey.  The bus was horrible, showing up whenever it felt like it, leaving us sometimes waiting outside in the hot sun for long, long periods of time.  The program itself seemed to consist of far too many kids crowded in one indoor room, being taught academics by a too small staff.  It infuriates me that in a city with hundreds of summer programs of all types, taking advantage of all Boston has to offer, that the best they can do for those with some of the greatest needs is to stuff them in a room.  I'll go back to trying summer school next year, as Janey will be in a different program then, the pre-high school program, but this summer, we're taking a break.

Of course, I'm a little panicked about how summer is going to go.  In the best of times, summer is my least favorite season.  I don't like heat at all, I don't like the lack of routine, I don't like much of anything about it.

I had all kinds of notions about setting up very detailed schedules to get through each day, but then I did a reality check and knew that would not work.  So I am trying something simpler.  Each day, in the morning, we will go someplace.  It doesn't matter where really.  It might be out to a fast food breakfast, or for a walk in a park, or to some store like Target, or to a pond to swim.  Once a week, I'm going to aim to take the train into the city, just to hang out.  Freddy is home this summer and is wonderfully willing to help out, or I would not really be able to attempt many of those things, but with his help, I think it will work.

I'm also going to pick one academic area a day to work on a bit with Janey.  I'm talking very basic stuff here, like picking a letter and working on learning to identify it, or talking with her about concepts like bigger or smaller, more or less, over or under, things like that.  I'll decide in the morning what that day's target will be, and then I can work it into the day---things like saying "Look, that flower is bigger than the other one!" or "I see a B on that sign!"

Aside from those two goals, I'm going to allow myself not to feel guilty about what gets us through the day.  If we get out in the morning, I'll relax if the afternoons are all videos and sitting around.  My energy level by afternoon is usually extremely low.  I can do things in the mornings, but afternoons---not so much.  Often, I get upset with myself over this, but I'm trying harder to be realistic.  Quite frankly, Janey probably wouldn't care if all day were just hanging out, as long as we took her now and then to the ice cream store and as long as Daddy gave her a ride at night, but I don't want to go that route.  So---I'll compromise with myself.

I'm still dreading the summer.  But that's not a new thing.  I can't think of a summer ever I didn't dread.  I'll be happy when it's September again.  Janey will have the same teachers next year as she did this year, and I dare say it was her best school year ever this year.  I can look toward that, and I think we'll make it through the next two and a half months.  Hopefully.

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 best weekend ever

The title says it all.  This past weekend with Janey was the best one we've ever had with her.

Janey, all weekend long, was happy.  Not manic happy, but very, very happy in a contented, sweet way.  There was not a single moment of tears or screaming.  She was smiling pretty much all the time.  It was amazing, truly amazing.  I would have given anything to be able to see this weekend during some of our darkest times.

We were able to do things that we are never able to do.  We took Janey to a new food place, Wahlburgers, and got takeout, which took a little while, and then ate it outside in the city.  I felt like I was living someone else's life.  We went to Savers, and Tony was prepared to take Janey out, for a ride or walk or whatever to keep her happy.  Instead, she was happy AT the Savers.  For 90 minutes.  Happy looking around, laughing, talking....amazing.  We sat back on Sunday night and watched two hours of old Family Feud episodes.  Janey watched with us, or played with her iPad, all in perfect contentment.  She slept well, she ate well....she was beyond a delight.

And of course, I want to figure it out.  What was different?  How can I capture what happened and repeat it?

I have a few theories.  I think she's very, very happy at school this year, and that translates to happy at home.  I wonder if she has pain of some sort a lot of the time, and it was gone for the weekend.  It was the first cool weekend of fall, and perhaps she loves fall and hates the heat, like me.  Tony and I had little else going on, and gave her a lot of attention.  We were both happy, after a long week, and she picks up on emotions tremendously.  Who knows?  I almost hate to write about the weekend, for fear of the jinx, but I had to.

There were lots of times when I thought it would never be like this.  There were weeks and months and even years where it was so hard I honestly sometimes felt I couldn't go on.  And however hard it was for me, I know it was so much harder for Janey.  No-one should ever be unhappy as much as she was.  I have so much joy when I see her happy.  It makes me realize that is all that matters with her.  The autism makes no difference.  The intellectual disability makes no difference.  It's her happiness that makes the difference.

I will try not to over-analyze.  I just wanted to record this weekend before it slipped into the vast territory of past time.  I wanted to have a record of how it can be.  And I wanted to thank Janey, and tell her I hope with all my heart that happiness like she has had lately can be the default state for the rest of her life.

A wonderful day

Once in a while, everything aligns and there comes a day like yesterday, a wonderful day for Janey and for us.

The first special treat of the day was seeing Janey see her brother William.  William is a junior in college, and Tony went to pick him up and bring him home from Christmas while Janey was asleep last night.  First thing in the morning, we took her into his room.  It took her a minute to register she was really seeing him, but once she did, she was thrilled.  She hugged him, over and over and over, backing up after each hug to look at him with a huge smile and total delight.  

Soon, it was time to dress Janey up for the next treat of the day.  A friend very, very kindly gave us tickets to see an autism-friendly performance of The Urban Nutcracker, an updated version of the classic ballet.  I didn't tell Janey about it until it was time to get dressed.  The part she might have been most excited to hear was that my friend Maryellen was going with us---one of her favorite people in the world.  I dressed Janey up in a dress with a sparkly skirt, and tried to manage her hair---it's at a hugely awkward inbetween stage while we wait for it to grow out.  She looked pretty anyway!

Janey was extremely cheerful as we drove to the city and parked to walk to the show.  She seems to love the city, the lights and excitement and bustle.  We need to take her there more.  We got to the show near starting time, and Janey happily sat down to wait.  When the curtain opened, it was to a dancing, stomping, drumming number.  She was overcome!  She almost exploded with happiness and excitement.  She also did something I haven't seen her do out of happiness before---bite her arm.  She didn't bite it hard enough to hurt, but more it seemed almost as a way to keep from screaming with excitement.  I've read recently that sometimes things like arm biting are comforting to kids with autism, and this was one time it seemed that way, a bit.

My happy, sweet girl

Autism friendly performances (at least the two we've been to!) are a great idea.  It's wonderful to be able to relax and know that I don't have to worry about Janey's behavior.  She needs frequent breaks, even when she's watching something she loved, and we got up and took her out several times.  When she came back, she was happy to watch for a while, including at one point for about 20 minutes.  There was a scene with "real" snow" falling on the stage, and Janey said "It's snowing!"  I loved watching her face as she watched the show.

The most special part was during the intermission, when a little boy came up to Janey and said "Hi, Janey!"  It turned out he's in a classroom next to hers at school.  Her reaction was incredible!  She was THRILLED to see him.  They held hands for a long, long time, smiling at each other with huge smiles and laughing.  They even had a little conversation, something that sounded like it was taught by ABA---he said "How are you?" and she said "I am fine!"  Then later he said "What's your name?" although he obviously knew her name!  She didn't answer that, but seemed to love to be asked.  I was in tears watching them interact.  It was by far the most I've ever seen Janey interact with a child her age.  It felt like that rarely seen thing---a Christmas miracle.

After the show, we had a quick meal, along with Maryellen.  The whole time (and indeed the whole day), Janey was happy.  At one point, Maryellen and I said with amazement how we would not have dreamt that a day like this would have been possible a year ago.  

We went after that to pick up Freddy from the bus, also coming home from college.  Janey was very happy to see him too.  On the way home, she said to him "Want to play your game?" by which she meant, we figured out, a game where Freddy chases her and says "I'm gonna get you!"  I was really struck by Janey calling it a game, knowing that it's something associated with Freddy that they do for fun together.  We've never called it a game, and it's cool she understands what that word means enough to use it there.

Freddy, Janey and William

The rest of the day was terrific, too---having all the kids at home, joking around, and Janey in the midst of it, happy and laughing.  It was a day I want to remember always, and reflect back on when days aren't as bright.  It's my Christmas present, one of the best ones I've ever gotten.