Susan Senator

This is the second day of battering winds and cold rain on my Cape Cod vacation.  You might find yourself saying, “Oh, that is really too bad!  Ugly rain on your vacation!  You have to be indoors and bored and trying not to eat to console yourself.”  Of course, you could also say, “Wow, you get to be on vacation in the most beautiful place on earth with your true love and ultra cute sons.”

Which is the truth?  It’s both.  How do I balance contentment with the human condition of dissatisfaction, and the drive to have the best/be the best?  Lately Ned and I have been really into Louis C.K. (the link I’ve given you is much more restrained than his usual stuff, but still funny).  The other day, Ned quoted from him, saying, “The key to being happy with your body is to want the body you have. In my case, you just have to want a shitty body.”  The thing is, unfortunately this is the truth.  Loving what you’re given is so much a part of happiness, yet it is one of the most challenging things to do.

It is also not what we are supposed to do — not entirely.  Because even as I try to curl up softly and contentedly with what I have, there is all that I still want, and that I am working toward.  My children are the best example of what is given, of what I have, but there is no way on earth that I’ll simply let them be exactly who/what they are.  They have to be pushed to try things and grow.   We say we love them for who they are, but we also love them for what they could become, if they push themselves.

I’ve always been trying to balance this dynamic, so that I am not pushing them to be something they’re not, thus giving them a bad message about themselves.  But — who they are is changeable, improvable!  So how do you do it right?   For example, over the years, I have learned that it is important not to view Nat’s autism as a defect, but rather as a collection of characteristics that are both him and not him.  This makes it all the more complicated, trying to get him to grow.  He’s like a big beautiful sunny meadow of flowers:  but which are the “real” flowers and which are the weeds? If you pull out too much, what will you have left?  If you completely replant, haven’t you changed the original essence?

I have heard virulent ABA-ists talk about stomping out all of the autistic behavior, in order to make the child fit in better.  Of course we want him to fit into the world, to find his place, and yet, at what cost?  Perhaps his self esteem will suffer, perhaps not.  The cost may be something more broad, like a vague pervasive unhappiness and feeling of discontent permeating the family atmosphere.

Sometimes I envy those autism parents who are just so sure of what is bad about their child, or fixable.  They have it all stacked up, solid and immutable.  They have a list in their heads of what is what.  I have never had that kind of certainty.  I have always seen the dreamy spacey qualities in Nat as both things to work on and things to let be.  I have sometimes (often) simply been in love with his autistic traits, such as his ability to sing the erratic movement of his wagon, as a little boy.  Or his odd verbal formulations that truly express the sentiment, far more than the “correct” usage:  “It’s a different, that’s okay.”  Or his soft self-talk, wispy whispers of things he needs to say, but also needs you not to hear.  How can I explain this to you, you who might say, “I have no right to complain to you because you have it so much tougher with that” that you have every right? I don’t know the depths and darkness of your misery, and you don’t truly know mine.

There is no way to compare one child to the next, one family to the next.  It is all about what it feels like.  It feels good to me to have this particular messy garden, where stuff dies one year and inexplicably grows the next.  Louis C.K. probably has it right:  he just loves his “shitty” body, rather than feeling miserable about the body he just can’t have.  The real truth, however, is that it is not a shitty body if it is alive and giving you joy.