Monday, July 2, 2012

The question

     The last few days I have talked to dozens of people about Sam and Autism. It seems to come up and it seems as soon as they realize Sammy has autism they have questions. I don't mind questions. In fact I love them because if it open up communication between people we level the playing field. If everything is out in the open, parents will get the services they need and things will get better for everyone. Especially our kids!

     The question I get most often is "When did you know?" they rarely label it, they just leave it hanging there. The first time someone asked me I looked at them and asked "Know what?" In my naivety I had no idea what they were asking about.  It's a hard question to answer because it such a lengthy answer. The bottom line is I always knew, I just didn't KNOW.

    I always knew something was different about my boy. He stared at me intently from the day he was born. I remember sitting in my hospital room looking at him. I was unnerved that he looked like he both saw through me and into me all at the same time. It is the same look I get from him now whenever I get real meaningful eye contact. It's like he can read my heart like a book.  He never looked at me when he nursed though, it was always all business.
     I remember him at 9 months old. He didn't have an ounce of separation anxiety. I remember joking with my husband that it was like he didn't even know I was his mother. He would hit and laugh and if you corrected him nothing happened. He didn't cry at raised voices. He would wake us up at 10 months old with a video of veggie tales humming and rocking. We thought he was singing the theme song, yeah not so much.

     I remember him at 18 months retreating into his world, pulling away, and becoming angry. He would run from us everywhere we went. he wouldn't sit still at the table. He stopped talking, he stopped moving forward. The cars that he would once roll back and forth sat lined up along the floor. His blocks lined up by color as he stacked them over and over.
     I remember him at a family Christmas just after he turned 2. I remember how he darted around and frustrated everyone there. I remember that no one connected to him. He didn't even want to open gifts, we ended up outside in the cold spinning in circles.
     I remember him at 3 when his little brother was born and he would softly touch his head. I remember the fear as Sammy would flip out near the baby with his arms and legs flailing everywhere. I remember him squirting his uncle with a water gun and for the first time ever he cried at being yelled at.
     I remember sitting in the office being told that my son had autism. I remember thinking at first that the doctor had to be wrong. He was just young for his age and immature. He must just have ADD. Then I cried.

Somewhere inside though, there was relief because it had a name. This entity that was taking the joy of raising Sammy from us. I demonized it but I knew it was right. I knew all along, I just didn't want to see it.

I use to say that because of it I lost precious months and years of help he could have had, and while yes that is true. It's only half the story.

The other half of that is nothing would have changed who he is. My fluffy headed wonder child with the blueberry eyes and electric smile is still the same boy on the inside that he always was. Autism didn't change him, it was always there. Autism changed me. It's still changing me in ways I haven't put into words yet.

So when people ask I always say "I always knew he was special, I just didn't have a name for it" That, is the absolute truth.