Wednesday, May 4, 2011

Standing outside the fire....

Most of you probably remember this song/video.
I loved it when I was in high school. I thought it was very moving. Now I cannot watch it without feeling powerful, overwhelming emotion. In this lifetime, I never believed I would be so accepting, so proud, of all that my child can achieve. It is so easy to see all of the can't in special needs, particularly with autism. The maybe nots, the probably nots, the fear, the doubt. It creeps in everyday. Yesterday I watched four neighborhood boys about Chandler's age playing basketball across the street. Laughing, and running, with arms around each other, high-fiving for baskets......I turned to see my son playing with his sky ball (small ball filled with glitter and water making it quite heavy) in the kitchen, just hitting it with his hand, in repetition. Hateful stimming behavior. My eyes were burning once again. Its not because I'm jealous, its not that I think he is less than. Cycling grief happens all the time. I just want him to be able to experience friends, and the joy of hanging with all the other kids. And I have that moment for a little bit. Then, I smile, and I know that his talent is not basketball, his talent is that we can play sky ball for ten minutes this year, when last year he would tolerate ten seconds. I clap my hands, and he grins and throws me the ball. Next summer maybe he will play basketball with me, if not, we will be playing a mean game of skyball. I will not allow my mind to limit you. You're amazing Chandler. You will do great things.


  1. That's something to celebrate! Waiting for my first game of "catch" with Wylie.

  2. I think your line "Cycling grief" is so appropriate.
    Ben is normal in our house. We understand a lot of what he says and wants, and laugh and talk about how utterly adorable he is.
    Then.. we go outside and see what kids his age are capable of, enjoying, doing.. and it just lays me out.
    I still see him functioning as an adult. I can't imagine any other scenario. Then we go to see his Dr. at Children's hopital. She diagnosed him as having severe autism. I tell her I think he's much more moderate then severe. Her answer is.. somedays I can see you thinking that. in other words, I stand by my diagnosis. Cycling Grief