Waiting

Waiting is always hard.  Waiting to make decisions, waiting for others to decide.  Waiting  for good news and waiting for bad.  Waiting for birth, waiting for death.  I’m tired of waiting.  After too much waiting impatience creeps in.  And then comes frustration - then anger.  You see, waiting for someone to hear you - to believe you - to see what you see so CLEARLY - and being either not believed or not understood for years and years slowly cuts away at your soul.  After a while you feel alone.  You prefer to be alone - to work alone - because you realize that nobody really understands your purpose - the part inside that drives you to work harder and push farther than anyone. 

I have spent the last 6 1/2 years fighting tooth and nail for both services and diagnosis for Grace.  Nothing we have gotten has been easy.  Nothing has been free.  Far more often we have been told “no” than “yes”.  I have argued passionately with family, friends, acquaintances, teachers, doctors and therapists.  I have put my career on hold, and at times at risk. I have lost more than one friend - and gained more than I’ve lost.  I’ve learned to stay quiet, and I’ve learned when to speak up.  My shoulders have learned that they can hold a tremendous amount of weight and still stand tall.  My personality becomes less outgoing and outspoken each year as the weight of this solitary world closes in on me.  

Grace continues to slip away.  I continue to be convinced that her issues are not just OCD and Tourette’s .  Tim and I took her to an autism specialist a couple of weeks ago.  She did a full evaluation on Grace.  We are waiting for the results.  Waiting again.

If there’s a battle I still choose to fight, it’s the battle for the children in the gray area.  The children who won’t be identified by school psychologists, or early childhood screenings.  These are the children on the fringe.  They are the ones who are missed.  They are the ones who struggle. They have high functioning autism, 

Aspergers, non verbal learning disabilities, OCD and ADHD.  They won’t be picked up for services.  Something must be done to provide a way to identify and then give support to these kids.  

Sometimes I wonder if I just know too much.  It would certainly be easier if I could just go back to living my life never knowing about autism, OCD, Tourettes, 504s, IEPs, and psychological testing.  But then I wouldn’t have Grace.  And Grace wouldn’t have taught me how to help children in my kindergarten classes.  And I suppose, as they say, I wouldn’t have found “the mountain I’m willing to die on”.