Thursday, March 18, 2010

Sam the ninja

Sam thinks he is a ninja. He's a backwards ninja with his pants on his head. Life is always interesting in our house. The insight Sammy shares with us is sometimes the largest ray of sunshine anyone ever could get. he shines like a new penny in the sunlight. today happens to be one of those days. I'll take it.

He also got sick at school today. He has been a puker all his life. He has a hair trigger stomach. After changing his diet it got better. spring is the time though if its going to happen it does. He's sitting on my couch in his underpants playing video games. He's happy and well.

He told me all about the leprechauns today , what an amazing imagination. maybe ill get him to tell me more again later. I do love listening to him talking to me. it took so long for him to find his words. I pray they never stop. His voice (even when he is angry) is like music to my ears a soft song on a summer night or a ruckus wind that clears away the clouds. Again. Ill take it

Tuesday, March 2, 2010

Stolen Pictures

Those of you with children who were diagnosed after 2 or 3 years old. Have you looked back at your photos? The photos you took before the day autism changed your life? For some of us that day was an answer to a silent , or not so silent, prayer. Some of us were shocked and terrified. Either way we had answers at that point, whether we wanted them or not. There really was little choice at that point. I moved through those days and weeks in kind of a stupor, but I got through them.

What still chills me to the core is the way autism has crept across all my photos. I look at photos of him before 9 months and I see a little boy inside his eyes. He is in there ! His windows are open and I can feel his presence. I remember him from so long ago. The child who babbled and played peekaboo. The boy who loved mommy and daddy.

From 9 to 18 months something changed. At first it was slow, little things that just didn't make sense. A child who suddenly became aggressive and angry. He stopped making word sounds I stopped being momma and became a grunting guttural sound. then BANG like a gunshot in a crowded room, everything was gone.

I lost my little boy at 18 months. I see that now pouring over his baby books and reading the entries into his journal. I didn't see it then. I still thought things were OK. I believed if I loved him enough those nagging doubts would go away. they would silence themselves in still dark water and my shining son would be fine.

Until the day i looked back at his photos. That day shook my being to the core in a way that nothing else could. " I'm sorry your son has autism, there is nothing you can do" didn't even have the impact my photos did.

looking back I see a little boy with fading light, changing intensity, disappearing self... and I missed it. I missed it all. I put my blinders on and trudged ahead as if my world wasn't changing. Autism crept in and stole my photos of the vibrant boy I thought I had and replaced him with a shallow imitation of the boy I knew him to be. It stole my son away from me and I have fought so hard to get him back to me. He may never be the same and really, who wants that? But I need to see the windows open.

I know now there was something about Sam from the beginning, something...different. He never cried in the nursery when all the other babies did. He never looked at me when he nursed. He never slept. His cry was always hollow. He always sounded strange when he made noises. I know now that those were signs I missed, ignored... It hurts me. I failed him.

But would anything have changed if I had kept my eyes wide? I have no idea. I know that those pictures register guilt, control, and culpability for who my son became. I am his mother. that makes it all my fault ...right?
I look at him today as he gets ready for school, green eggs and ham day, all dressed in green jammies. Wide eyes and a big smile as he stares past my eyes into my hair. His eyes darting everywhere as he smiles and flaps. I brushed his hair without incident today. His teeth never got brushed and he hug kiss snuggled me from the door. His windows are closed today so far. I hope he comes home with some fresh air for me. After looking at his photos I need it