Monday, February 15, 2016

The Trumpet of the Swan Song

Stephen is 16 today.

Instead of going to get his driver's license, he's getting a trip to Arby's.

I almost didn't write today; it's been so long since I've tried to put my thoughts down like this.  Maybe today's the last post, ever.  It feels like maybe it should be...but I reserve the right to come back if the spirit so moves.

In an effort to keep this at a manageable length (I'm at work and incredibly busy - no time for long, rambling posts anymore) I'll say that overall, life with Stephen has settled into a fairly consistent pattern.  Pattern is a key word here, because his OCD rituals and routines are abundant and unrelenting.  We still occasionally have some incidents of SIB, but nothing like it used to be.  For that we are incredibly thankful.

Still no progress on the toileting front.  Who knows if that will ever change?  I counted up recently, and conservatively speaking we've changed over 36,000 diapers over his lifetime.  It's become part of life, end of story.

Because of my philosopher-husband and the things he's read and shared, for some time now I've been trying to learn to accept what is.  Seeing as how there really isn't any choice, it's surprising how often we human beings fret and stew and worry over what is.  And with autism, there's sometimes a lot of WHAT IS going on.

It's not easy.  Never will be.  But it's manageable.  We've found ways to escape the isolation, at least occasionally.  We laugh.  We love our children.  We read.  We do our best, most every day, to accept what is, and to find joy where we can.

So, no.  No excitement over driving. No girlfriend. No real independence.  None of the things that most 16 year old boys have or want or enjoy.

In essence, no real voice.  Hence the reference in the title above.  To quote from a movie that I hear Stephen watching clips from pretty often:

Boyd: No fair! Louie didn't say "polo"!
Ella: Well, he can't talk.
Boyd: Can't talk? And he calls himself a Trumpeter Swan? I don't think so.
Billie: Louie can't help it. Father says he's, you know,
[whispering]
Billie: defective.
Boyd: Well, defect...if you can't talk, you can't play!

To the eyes of many, Stephen would be considered "defective."  To be fair, his brain doesn't work like it should.  Poor soul sometimes has a hard time making sense of the world around him, and he can't "play" like most kids his age.  

I've alluded to this before, but I think, thanks to David and to so many who love Stephen and feel fiercely protective of him, I've finally settled into the what is of his life: his innocence, his joy, his irresistible laughter, his precious face, the very lovableness of him...through these things, he finds his voice.  

Stephen, my sweet love, my baby, my son... I hear you.  

I love you.  Happy birthday, precious one.