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.

No Questions Asked

It's almost impossible for me to write legibly by hand.  If I had grown up in today's world, I'm quite sure I would have been diagnosed with dysgraphia or something similar.  As an adult, this is not a huge problem.  I type everything---out sick notes, grocery lists, birthday greetings---whatever needs writing.  But lately, I've been playing out an extended analogy in my mind.

What if every day, all day long, I was being asked to write by hand?  What if almost every waking hour, someone handed me paper and pencil and told me to write?  What if this happened in every context---out of the house and in?

What if I were offered tool that were supposed to help me write, but that still left it very hard to do---tools like special pens, nice smooth paper, a great writing desk?  What if, when I resisted these tools because they still left it very hard for me to write, instead of backing down, I kept being offered them, with new tools being tried all the time?

What if, once in a while, if I put all my effort into it, I wrote fairly well?  What if instead of people accepting this as something I could do when conditions were just right, they took it as proof I could write well ALL the time if I tried a little harder?

What if I had to write to get the things I wanted, even if people knew perfectly well what I wanted?  What if I brought someone the food I wanted, or the video, or the toy, and instead of just giving me what I wanted, they insisted I write it down?

What if I were feeling upset, crying, screaming, and people came over and said "If you could just write down what was wrong, we could help?"

Of course, the writing here stands in for Janey's speech, and in a large sense, her communication overall.  All day, everyone around Janey prompts her to talk, asks her to talk, cajoles her to talk.  People try getting her to talk by means of iPad programs, picture exchanges, sign language.  When she does speak well, people assume that means she CAN talk and therefore, needs to talk more.  People prompt her to "use her words" even if it's pretty plain what she wants.  And people, when she's at her most upset, beg her to tell them what is wrong.

By saying "people" here, I mean, most of all, myself.  I have done all those things, often.  I constantly ask Janey questions, hoping for answers.  I start sentences for her, hoping she will finish.  I present her with alternatives to verbal talking.  When she does speak well, I latch onto it, hoping it is proof she will someday talk easily.  When she brings me a glass and a container of juice, I ask her what she wants.  When she screams, I say "What feels wrong?  Why are you crying?"

After my last blog post, I thought and thought about what I was doing.  And I decided to try to change.

For the last few days, I've done my level best not to do ANYTHING to try to get Janey to talk or communicate.  I've stopped asking her questions.  It's very hard to do.  I catch myself 20 times a day about to ask one, and quickly change it into a statement.  I'll say "What do you want to watch...um, I'll put on the TV and see what's on!"  or "What's wrong, sweetie...oh, uh...you seem very sad.  I will snuggle you"  I have been talking to her, more than ever, but talking without asking for a return conversation.  If I know what she wants, I either give it to her or tell her why I can't.

It's very early to say, but the results have been quite astonishing to me so far.  Almost immediately, I saw an uptick in Janey's talking.  As I wrote on Facebook, within an hour, she had spoken one of her longer sentences to me---"Want to snuggle on Mama's bed with some cheese?"  I've heard a few of the rare non-asking for things statements---outside, she saw one of our resident stray cats and said "That cat is Tommy!"  (it wasn't Tommy, but that's beside the point!)  When we wants to watch something to TV, I scroll along all the possible choices without comment, and she yells out what she wants "Want Uncle Rusty!" (a favorite episode of Little Bear) or "Want quilt one!" (her favorite Courage the Cowardly Dog)

This trial of not asking for communication is part of a larger general new philosophy that Tony and I have started, without really anything as formal as talking it about it or putting rules to it.  In general, we are trying to keep the stress level of Janey's life as low as possible.  From what those with autism that are able to communicate their feelings say, just living through a day with autism can be very stressful.  Maybe my job is to not add any stress, to reduce stress wherever I can.  This new attitude started while Janey was in the hospital, dreadfully sick.  Janey has been dealt a hand in life that is not always easy.  I hope this experiment, this test of reducing the pressure on her in a little way, helps her.  If not, we'll keep trying, to see what does.

Realistic Dreaming vs. Giving Up

Lately I've been thinking a lot about how my vision of Janey's future affects her, and affects how we spend our time with her.  I've been doing a little soul-searching.  Am I selling Janey short by how I envision her future?

After a lot of thought, I actually for once cut myself a break and decided---no, I'm not.  To show my reasoning, a little analogy.  Say I bought a Power Ball ticket (which I don't, but I could of!)  It would be fine to dream about how life would be if I won.  I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts.  And it's true that it's POSSIBLE I'd win.  It wouldn't be likely, not at all likely, but it's not impossible.  There's nothing wrong with that kind of dreaming.  However, what if I decided to live life assuming I WOULD win the lottery?  What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending?  Most people would agree that wouldn't be the best course of action.

I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own.  I dream those things for her all the time.  I am open to those dreams coming true.  However, Janey is ten.  She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed.  She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital.  Of course, there are not exact odds for life outcomes, because there are too many variables.  But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey.  If Janey were four instead of ten, the odds would be hugely different.  Many, many four year olds with profiles like Janey go on to do many of the things on my list.  Quite a few six years also do.  But as the years go by, the numbers get smaller.

Does this mean I'm giving up on Janey?  Not in any way.  It means I am using reasonable odds to decide where to put our time and resources.  Janey's time, her time RIGHT NOW, is valuable.  Another analogy---Picture a couple that wants to have a very comfortable retirement.  In fact, they are obsessed with saving for retirement.  As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement.  They don't eat out.  They don't take vacations.  They don't have reliable cars.  They don't spend a cent they don't need to.  And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so.  They have lived many years not enjoying the right now.

When I have time to spend with Janey, how should I spend it?  Janey has been in school for eight years now.  She can't name letters.  She can't add simple sums.  She can't reliably identify shapes or colors.  When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills?  I would say no.

Instead, I choose to invest in the now.  Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s.  I love the stories behind the songs Casey tells, and Janey loves much of the music.  She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it.  When she hears a song she hates, she turns off the music and we move on.  But while the time lasts, I'd say it's time extremely well spent.  Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.

My dreams for Janey, my dreams that I think truly can come true?  That she have a meaningful life---one with joys and interests and respect from those around her.  Success isn't the same for everyone.  I think being realistic about what Janey's future might be like is not giving up.  It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.