Raising Pinocchio

Tales on raising a child with autism and the kismet of living in semi-rural suburbia.

Tuesday, September 21, 2010

Making Things Happen

 I don't like to think of myself as a pushy New Yorker.  Firstly, I haven't been a New Yorker for almost a decade.  Secondly, I want to think that people like me and I act in a manner that encourages liking.  And lastly, I have too much on my plate already to want to be foisting my agenda on the rest of the world.

Nevertheless, there comes a time for action.  And I want to be involved with my children's education and school.  That is why I met with the School District Superintendent today.  I decided that our district should have a parent support group for parents of special needs children.  As fate would have it, the superintendent thinks so, as well.  Therefore, it was a very pleasant meeting.

I wonder what happened to the girl who was once too shy to collect for newspaper delivery.  How did I get the backbone to actively seek out meetings with school superintendents?  Thankfully, our district superintendent is laid back and welcoming. Even as I sat across from him, however, I realized the power this man holds -- he could pull the plug on my child's educational program in the blink of an eye, if he saw fit.  It's kind of like meeting with Santa Claus - you're hoping he'll like you and that you'll remain in his good graces so that, down the line, your child will get what he needs without a hassle.  So far so good.

Wednesday, September 01, 2010

Raising Pinocchio ...
I've renamed my blog.  When I write my book, this will be the title.  

I so often feel that raising a child with autism is such a different experience than raising neurotypical children, that Luke falls in a class all his own.  "Pinocchio" seems the perfect moniker for him.  It's not that he's made of wood (though he tolerates pain pretty well), nor that he has a fixed wooden expression (though he can when he's anxious, bored or tired), nor that the Blue Fairy had anything whatsoever to do with his conception.

Time and again, however, I find myself remarking that Luke did something "just like a real boy!"  So often he does things that are so atypical from the norm that every act of normalcy is a boon to my spirit.  And, after all, I've wished on so many stars for him to make progress that Jiminy Cricket would be proud.

There's an interesting dichotomy inherent in having a child with autism ... you see it in many aspects of your life.  For example, the people you thought were closest and would be most supportive are the ones who suddenly never ask how your child is and, sometimes even, eventually stop calling you at all.  Complete strangers suddenly become more intimately knowledgeable of your life because you're living the same life ... a life with autism.  I have friends online who know me better now than people who have known me for 30 years.  

Your reactions to events are sometimes quite different than what most people would anticipate.  After my son's first day of school, we had this "conversation":
Me: "Luke, did you have a good day or a bad day?"
Luke: "Bad day."
Me (unsure if he was answering the question or simply repeating the last thing I said): "Luke, did you have a bad day or a good day?"
Luke: "Good day." *pause*  "Bad day.  BAD DAY."
Me (heart skipping a little because he actually answered my question): "Why?  WHY did you have a bad day?"
Luke (pausing, then jumping a little and spastically flapping his hands a bit): "No hitting!

Oh, play the violins!!  Halleluiah!  

Let me translate:  Luke had a bad day because he hit his teacher and aide.  The great part is that a) he answered the first "why" question he's ever answered in his life and b) he answered it in a way that assures me that he knows hitting is bad.  Yay! 

So, "Raising Pinocchio" it is.  Mothering a child on the spectrum is full of unexpected anxieties, disappointments, and heartache ... but now and then a real boy emerges.  And that is when your dreams come true.