Thursday, April 5, 2012

When the music's gone

Tonight, I read this.  [WARNING: warm and fuzzy it is not.  It's hard, hard read]  As if her personal blog wasn't enough, this woman has decided to start blogging over at Huffington Post, further ensuring the futility of water proof mascara everywhere. 

Yesterday, I and several other parents stormed passed respectfully through security at our state capitol in order to show support for the BCBAs who have worked such magic in our children.  Also to show a healthy amount of disdain for our local board of psychology, but that's another rant.  For three hours, we sat in uncomfortable chairs, reliving our high school speech class nerves while waiting to be called to speak.  I was all prepared to write about that - how proud I was that we all came, how much of an impact I thought it made to ensure that seven senators came face to face with the parents and therapists on the front lines of this battle.

And I am proud.

But after reading that post, I am also broken-hearted.  Because we have so much more work to do.  It's not a battle.  It's a damned war.

I'm not going to say I haven't had my moments of despair and rage at autism - we all have.  But nobody forced me to become a parent, and Lord knows no one made me any promise that it was going to be all sunshine and roses.  At this point, I've more or less accepted that bigger Hands than mine were involved in shaping the destiny of this child of mine - my job now is ensuring he has the right tools to find his own way along that path, and to point him in the right direction.  That should be every parent's job.

As "high functioning" as little C is, those kids had just as much potential.  They were just as capable of changing the world.  Now, it looks like we're going to have to change it for them.

We've got to end this stigma - this Autism-Is-the-End-of-the-World stigma.  As I played a run-and-tackle-goodnight-hug game with my boys tonight, little C ran to me, hitting me like a sack of bricks and nearly knocking me over with the force of his delight.  As I looked at him, cheeks flushed and breathless with laughter, I thought, This is the face of autism. Just as much as the face of frustration or confusion or anxiety that he also sports from time to time, this is it.  It's up to us - those on the front lines - to make people see both sides of the coin, to see that light and laughter - that person - before anything else.

I can't really add anything to Jess' post.  As usual, her words are poignant and just about perfect.  I will reiterate her point that there is nothing more noble than reaching out for help when you need it, and we all - at some point or another - need it.

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