Saturday, June 11, 2011
On this road with you.
I think being open about the diagnosis in our life will bring awareness and hopefully, acceptance. But it goes against every self preservation instinct that I feel. People cannot help themselves, once they know, you are treated differently.
I hear about people doing the walks to raise awareness and money for research. People assume that I will be front and center raising the most, but I'm not.
I haven't figured out where my road is leading yet. I want to help others deal with the diagnosis. Finding a cure, while a beautiful idea, is not foremost in my mind. I love my kids. I love their idiosyncrasies. I hate the tantrums. I hate the routine. I hate the constant sound of crying because of the limitation in expressing emotion but I love my children and I want them to enjoy their life. I want them to learn to live easily and well. I want the security that when I die, my kids will be okay. I want to help parents deal with the fact that we may never have that security. I want them to have every normal experience that they can, even if I have to create it myself. Looking for a dancing school that will accept an Autistic, no problem-I'll make one. I may be overweight but I'll learn how to dance like a ballerina so that I can show you and make you happy.
I want to walk into a store with you and not get weird looks when you have to jump over the threshold and then proceed to touch every item that we pass. I want to teach people how to speak to you so that everyone can have meaningful interaction. I want to have the confidence that you will respond to your name so that I can let go of your hand.
I want to sleep well. I want you to have sweet dreams instead night terrors. I want you to grow up never realizing that when things get really hard and mommy moves to stand behind you to calm you down with a big bear hug, it's because she doesn't want you to see her crying too.
I want to laugh with the same abandon as you. I want to mirror the innocence in your eyes. I want your world to always be as safe as it is today.
I want that kind of life for myself and for all parents of Autistics. That's my goal, even though I haven't figured out how I will make that happen. I will make it happen as I travel down this road with you.