Autism Ten Years In

Janey, age 13---Ten Years In

Last month, the tenth anniversary of Janey's diagnosis with autism passed unnoticed.  I realized it a few days ago, and I had a thought.  What if, on that December day in 2007, I'd been able to have a glimpse forward to now?  What would I have thought?

I will be honest and say I might have been quite discouraged in some ways.  Janey talks now probably less than she did at the time she was diagnosed, and far less than she did when she was two, before her big regression.  Her academic growth has been very, very slow.  She doesn't read, or write, or add or subtract or reliably do things like identify shapes or colors.  She is not fully toilet trained.  She still needs a huge amount of help with self-care.  In short, if you look at measures like standard IQ testing or academic achievement or potential to live an independent life, she is not one of autism's success stories.  That would be a hard thing to have known in advance.

However, in some ways, I think I would have been quite encouraged.  My glimpse forward might have landed on any of quite a number of happy times just this past weekend.  Maybe I'd have seen us all watching Weird Al videos, together on the couch, laughing our heads off.  Maybe it would have been the big Thai take-out feast we had as a pre-back to college treat with Freddy, Janey joining in with huge smiles and her usually adventurous appetite.  Or I might have just seen one of the many times Janey's engaging manner and enthusiasm for life improved our days.

While talking to my friend Michelle about these thoughts, we touched on what I think many out there have realized.  There are different kinds of autism.  I truly don't think it would have made a huge difference what we did in terms of Janey's speech and academic development.  I see other kids that are in the same program as her, kids who started at a baseline like hers or in some cases, far lower, and who now read with ease and speak in a way very close to typical.  However, Janey has something that I don't think all kids starting where she does develop.  It's hard to put my finger on.  It's not really social skills, or ability to engage with others, but it's a personality that in some ways is very unlike the stereotypical vision people have of autism.  In that way, she has progressed.  I would hope if I were able to glimpse forward, I'd have seen that---the spark, the joy, the humor.

When Janey was first diagnosed, fear and hope battled in my mind.  I had hope that she would regain all her speech, that she would somehow progress to the point she left autism behind.  I had fear that life for her would be a joyless life, that she would never be happy---and because it's very true that a mother is only as happy as her saddest child, I would never be happy either.  Now, ten years later, it is fair to say I have far less hope about Janey's potential for typical progress.  However, the fear is also much less.  The Janey that exists today is not defined by what she can't do.  Of course I fear for her future, often, but I also delight in her joys.  In many ways, I have changed more in the ten years than Janey has.  Even if I had been able to look forward, I would not have looked at Janey with the same eyes I do now---eyes that see her for who she is, a valuable, special, frustratingly but steadfastly complex and unique. 

Here's to the next ten years.

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.