We Just Keep on Dreaming

People stop and stare at me.
We just walk on by.
We just keep on dreaming

I was the parent who got to take our daughter to that fateful appointment with the psychologist who made the initial diagnosis of autism.  I don't know if there is a true way of expressing the feelings that moment brings for those who will never experience it.  I am sure there are similar experiences we all can relate to in some way, but that one is particular to parents of autistic children, and comes with all the yucky baggage we all have heard about the last decade or so that such a life-changing diagnosis brings with it.  In our case, Jill got to be there for our son and I got our daughter.  That's just how it worked out. 

I wasn't surprised, that's certain.  We had suspected we'd get that diagnosis.  There were just too many similarities with her brother.  In her case, some of her issues were more severe than his, so it was a bit more obvious to us that we had something interesting on our hands.  Having gone through it all with her brother just a few months before made it less traumatic as well.  Still, to get the diagnosis is a memory you never forget.

As we were leaving the Westside Regional Center parking lot, I put on our MP3 player.  It was on shuffle.  As I drove out of the parking lot I was looking at my happy, beautiful and carefree little girl in my rear view mirror.  The mid afternoon sun was gently caressing her face, basking her in a tender glow of peace and joy.  Then it hit me then, real hard, that her life wasn't going to be the life I had wanted her to have, planned on her having, and thought she would be having.  I realized she was no ordinary little girl.  That she was different.  Special.  Truly one-of-a-kind.  And it wasn't going to be easy.  And that I was her dad.  I'm her dad.

Then this song came on.

Nine years prior to that moment I had a remarkable moment of personal connection with Debbie Harry, rock goddess and legendary icon of early alternative pop,  It was during the days following September 11, 2001.  I was in New York, working for a theatrical talent agency in an office that was very close to Ground Zero.  We were called into work for no other reason than just to go into work.  Looking back, nobody else was working, especially in theater and especially in such close proximity to the actual event.  I was answering the phones that day.  When they did ring, it was very surreal.  Nobody expected an answer.  When I picked up, people on the other end felt suddenly compelled to express their sorrow and anguish and heartfelt wishes of love and luck, and I had to listen to them, and thank them, and take their message.

One of the callers was Debbie Harry.  I knew right away because the first words out of her mouth were, "Hi, I'm Debbie Harry!"  She was calling to speak with one of our agents because one of our more aggressive playwrights had sent her a script, asking her to be in a reading, unbeknownst to anybody in the office.  She was calling to say she was flattered but would be away at the time they wanted her.  I said I'd pass on the message and was ready to thank her and end the call when she unexpectedly asked me how it was going, how I was doing.  Next thing I knew, I was having a wonderfully warm and sincere conversation with Debbie Harry - Blondie - rock legend - about the events of 9/11 and the immediate aftermath we were both going through.  I remember it like it was yesterday.  It was a very real and personal moment of connection between two people, strangers, yet not...not really strangers at all. 

Flash forward nine years and there she was again, Debbie Harry, sharing perhaps one of the most personal moments I will ever have, and making it better, easier, and real.

I got reminded of this today as I was with Elena at our local park and then our local Trader Joe's.  She was having, what we call around here, a "heavy autism" day.  A day when she exhibits some of the more severe symptoms of her condition in more severe ways than usual. Those are some of our most difficult days.  Today was rough. It was just the two of us out in the world, which makes it even tougher.   It was the kind of day when we get glances from strangers, looks from other kids and outright stares from parents and other caregivers. 

We just walk on by.
We just keep on dreaming.

On days like today, with the stares, the meltdowns, the whispers and looks, the odd encounters and uncontrollable reactions, bizarre behaviors and sensory dysfunctions, I get taken back to the moment in the car, as I looked at her in the rear view mirror, and this song came on, and tears were streaming down my face, and I realized at that moment, that for us, that dreams are what we got, dreams are what we have, and that we have a lifetime of dreaming before us. 
  
Imagine something of your very own
Something you can have and hold
I'd build a road in gold 
Just to have some dreaming

Dreaming is free...