A dream of a race

The other night, I had a dream about a race.  In the dream, as often in my dreams, I was a very good runner (in real life, I simply can't run at all).  The race was being held in a Nordic kind of place, on a snowy road.  I was near the lead when we came to a very steep hill.  I told myself I'd get up it fine if I kept my eyes closed, so I didn't notice I was on a hill.  That strategy was going well, but for some reason I opened my eyes, and I couldn't go on.  So I turned around and ran the opposite direction.  I felt unsure about this, wondering just what the procedure was for running a race backwards.  I stayed close to the edge of the road, as to not get in the way of the runners going the right direction.  The dream ended after I got back down the hill, still running.

I'm a heavy dreamer, with almost every night featuring dreams, usually even more complicated than this race one.  But the race has lingered in my mind, and I'm starting to see it as an analogy of my life with Janey.  Not that I think my mind was thinking up analogies in the night, although who knows?

The running with my eyes closed part, to keep from realizing what a steep hill I was on...well, I do that a lot, figuratively.  One way is by not being around typical kids Janey's age much.  Of course, I know that most 14 year olds can talk well, read well, are fully toilet trained, are starting on the path to adulthood.  But by just not thinking about that, I can keep from comparing Janey, and comparing is one of the few things I can say very strongly not to do.  I keep my eyes closed in other ways too. In a way, I also don't compare my life to other 53 year olds like myself.  Maybe of them are starting to see the light at the end of the tunnel of childrearing.  They are seeing grandchildren, going on trips, looking toward retirement perhaps.  They are able to do such things as eat out for dinner.  They can attend college graduations without needing to worry about childcare.  They are at a different stage of adulthood than I am.  But if I don't think about that, don't compare, my life seems, well, just my life.

When I do open my eyes, at times a despair washes over me.  I feel, like in the dream, that I can't go on like this.  I am overwhelmed.  So mostly, I just don't think about the parts of my life which have so much left the mainstream.

Then---racing backwards.  Being on an opposite path, running the same race but in the other direction.

Life with Janey, as it races on, is often like an opposite race.  We aren't preparing her for college.  We aren't thinking ahead to her life on her own.  We are preparing to care for her for always, and if we look to the end of the race, it's a scary thing.  There is not much of a set path for an opposite race.  Sometimes it does feel like we are on the edges, staying out of the way of the regular racers, the ones heading steadily to the goal.

But in the dream, I recall seeing how lovely the snowy path was, even as I ran it in the opposite direction of the other runners.  That, too, is true.  I've followed the news of celebrity college cheating with a bit of a feeling close to snugness.  I don't have to worry about that.  I read about parents struggling with homework.  Janey doesn't have homework.  I hear about the pain of breakups, the worry about girls out on their own, the body image issues...and I can feel truly glad those aren't part of my life.  Not glad for Janey, missing the highs that go along with those lows, but glad purely selfishly for me, for the more intensive but vastly different parenting she requires.

I often like to search for an image to go with my posts.  I tried and tried to find a picture that looked like the hill in my dream.  I wish you could record dreams---maybe someday soon!  But until then, I'll include a picture of Janey I took this morning.  I guess dreams are like lives.  You never can quite see what another person's dream is like.  You can never quite live another person's life.  We can just live our own, and do our best with the particular path we are following.

True Inclusion

I've read lots of stories about inclusion classrooms that end something like this..."As I left the room, I said to the teacher 'But you told me this was an inclusion class!  I didn't see any kids in there with special needs!' and the teacher smiled and said 'But there were, and I'd challenge you to figure out who they were!'"  The point of the story always is that we have so many preconceptions about children with special needs, but in reality, they are JUST LIKE the rest of kids, and if you just put them in a classroom with typical peers, they will blend totally in!  Well, if you visited Janey's classroom, unless you are unusually clueless, you would not tell that story.  Janey doesn't blend in.  She isn't exactly like all the other kids, unless you are looking at a still photo with one of her smiling face poses.  It would only take a minute or two for anyone to figure out that yes, she's one of the special needs kids.  And that is what I consider true inclusion.

I've been thinking about this a lot the last few days, because of my happiness over how the school year is starting with Janey, and how in general her remarkable school and teachers handle inclusion.  Here's a few examples----

Last night was the curriculum night at school.  I always go to that night, and although I've never felt unwelcome, I've often left feeling sad.  This is not because of anything anyone did wrong, but just because the main line curriculum is not something Janey can access much.  The classes she's in consist of about 25 kids, of which around 4-6 are on IEPs (I don't know the exact number, because that's not my business, and I am sure there are some kids that DO blend in), so most of the class is working at a normal grade level.  I hear about all the reading and math and history and science and testing the year will bring, and I am very happy she's going to a school that teaches at the high level it does, but I am left feeling a little empty---wishing Janey was going to be learning those things too.  When Janey's teacher asked me if I was going last night to the curriculum night, I said "Um, maybe.." which she knew enough to know meant no.  And she said "Please come---we are personalizing the night"  I went, because I was intrigued, and indeed, that is just what they did.  Each parent sat at their child's desk, and each place had a decorative guide to exactly what that child's curriculum was like, personalized.  We all got a chance to read that, and then just to talk to the parents of the kids our kid sits with.  It was wonderful.  I love hearing about the other kids in Janey's class, and I love talking about Janey.  In the background, there was a slide show of pictures from that very day in class, showing what the kids were doing, and I was able to see Janey right there with the rest.   The teachers were available to answer questions, and I left feeling very, very happy.

A piece of inclusion that often gets lost in the shuffle is the regular education kids in the class.  It's very important to me that they also benefit from inclusion, and at Janey's school, I feel they do.  The extra resources that having a lot of kids with special needs around bring in benefits all kids---there are speech therapists, OTs, PTs and lots of other helpers in and out of the class, and also two teachers and an aide, and often a student teacher.  It's no coincidences that for several years in a row, the Henderson School has been the top performing school in Boston on the state testing.  But I think it's more than academic.  The kids learn to accept that there are those among us who need more help, and they learn to give it, and to feel good about themselves for giving it.  There's a new girl in Janey's class who took to her immediately, and who Janey has taken to also.  She is treating Janey like a friend---playing little games with her, chasing her, sneaking up behind her and saying "guess who?"---all that.  For a little bit, I wondered if she somehow hadn't noticed that Janey spoke very little, if she didn't see her autism and intellectual disability.  As if she had read my mind, the girl stopped me as I was leaving Janey in the room the other morning and said seriously "I've only been at this school a little while, but I know how things work.  I have a cousin like Janey"  Somehow, that filled me with an extreme happiness.  She was telling me that she liked Janey WITH Janey's needs---she was aware of them, but Janey didn't need to be "normal" to be worthy of friendship.  That is an attitude her school promotes, and it's a crucial part of true inclusion.

I often wonder how much Janey understands about herself.  Does it matter to her that she be with all kinds of kids, that she do "normal" things?  Would she be just as happy in a separate classroom?  I partly answer that by seeing her after a day of summer school, which is separate.  All reports were she had great teachers this summer, but she didn't have the spark, the joy, that a day at the Henderson gives her.  And last week, I saw how much she does get when she had some homework---very appropriate homework she could do.  When I told her it was time to do homework, and we sat down at a desk to do it, she was thrilled.  She has heard the boys talk about homework a million times, and suddenly---it was her turn!  She did it willingly and to the best of her abilities.  I think being in a classroom with regular routines---saluting the flag, reading groups, recess, homework---all the things we remember from school---is very satisfying to her.

Inclusion is not easy.  This is the 25th year the Henderson School has been inclusive, and I am sure there are still things everyone is learning.  But done right, it doesn't have to be a situation where success means you can't tell who the special needs kids are.  It can be a situation where the very fact that some of the kids have extreme special needs is a boon to everyone.

What we're gonna be

There's a line in one of my favorite songs by one of my favorite singers, Don Williams, that says "I guess we're all gonna be what we're gonna be"  It sounds like a simple statement, but as time goes by, it strikes me as one of the most powerful and true statements out there, especially when it comes to raising kids.  Your kids are who they are.  They are going to be who they are going to be.  We can ease the path for them, we can help them adapt who they are to this cold world, we can teach them coping techniques and give them ideas and help, financial and emotional, we can give them a soft place to land, but we aren't going to change who they are.  

This was brought home to me in a very good way yesterday, when William stopped me just before I left to pick up Janey and showed me the certificate he received at school, stating he was going to be the valedictorian of his high school class.  To say I was proud is to put it as mildly as it can be put.  I was out of my mind proud, in tears proud, overwhelmed with emotion proud.  And my mind did one of those things that usually only happen in movies.  It did a sweep back on William's life.  I saw him as a premature baby, a quirky little fellow, a kid who had trouble adjusting to school, a kid that took some time to find his place in the world.  Then I saw him in high school---working until 2 am on homework, often, striving for excellence every single second.  And I saw---it was all him.  I had very, very little to do with it.  He did the work.  I can honestly say I never once helped him with homework after about 2nd grade.  Once Janey was born, a bit after that, in some ways, he raised himself.  We gave him a bed, food, love, but we in no way directed his schoolwork or insisted on him working.  Instead, we often begged him to take breaks, to not knock himself out quite so much.  But he had his own goals, his own personality, and that is what makes me so proud---that he set his own agenda, made his own dream and then followed it.

When it comes to Janey, it's harder to let myself believe that she will do the same, but I do, in a deep part of me, believe that she will.  It's unlikely she will do it in the way William did, but she has things that drive her, just like William does.  When she wants to know how to do something, she figures it out.  I watch her sometimes now with her hands dancing over the iPad, or picking the exact episode she wants on Netflix, or finding all the ingredients to the dish she wants Tony to fix, or finding a way to ask me for the song she wants to hear.  None of those things came easily to her, but she had goals, even if she didn't think of them that way.  She wants to control her world, her activities, what she hears and sees and does, as much as anyone does.  We by necessity have to hold her back, often.  We can't let her use the stove, as I think she longs to, we can't let her go outside and explore in the freezing cold, we have to cut off her TV viewing at  times.  But she is showing us her way, and like with William, I think a lot of parenting is stepping out of the way as much as is safe and healthy and possible, and letting her work toward what drives her.  The autism makes this tricky.  I think of it as a handicap, not in the old way of handicapped kids, but in the way of a race horse or a golf player---something that she has to work against.  This might not be totally politically correct to think---I think I'm supposed to see it as a part of her, but I don't, always.  I see it as part of her own individual path, something she must work around.  It's a lot bigger than what most of us are given to work around, and in the end, it will limit what she can do.  There's no getting around that.  But it won't stop her from becoming, as much as she can, who she is.

I am proud of all three of my children.  They have different abilities, different goals, different needs, but that is what makes life interesting.  They are all gonna be what they're gonna be.