Saturday, May 21, 2011
Expanding their world
I hear others' stories constantly. People seem to think that I want to know every person touched by Autism and in someways, they are right. I want to give every parent with a child on the spectrum a hug and look them in the eyes and tell them that it is okay. But in other ways, I cry for them, because I know what they are surviving and I know that happy moments are hard earned.
I live in a constant state of denial. No one will ever convince me that my children have autism. We've seen 73 specialists, they all agree with each other, yet with each report, I'm shocked that another professional sees these markers. I think the only way I can deal with the diagnosis is to deny it.
I consider myself educated and intelligent. I can spit every word that is written back out if it means that my children will get more therapy in the school system or Early Intervention. But those days that I read the reports and meet with the administrators knock me on my ass. It makes me face my denial and it makes me feel so low that I can't bare it so I focus on the positive. I focus on their speech and the alphabet. I mangle the Itsy Bitsy Spider song on purpose. The Alphabet has no shot in hell of being sung in order. If my children want to think inside the box, that's fine because I am going to make their box so huge that it won't stop them from growing and excelling.
My Bugabuga likes to look down and stare at her fish. That is her world. I needed to make her world bigger. I needed to live in her fish tank. So I did. I put pictures of fish up all around the house. High up so that her chin couldn't stay glued to her chest. I bought fish pajamas for myself. I needed her attention and I got it.
The CEO hated red. It is a sure sign of regression when she shies away from it. I couldn't lose her again so I made everything red. Rice, chicken, fish, vegetables, shirts, pants, plates, forks, curtains, walls. Everything. I hated it but we did what we had to do. It's not acceptable to reject things without reason and she learned that. She understood and she began accepting different colors, textures. Her world became a little bit larger.
I'm not of the school to coddle a special needs person. I'm more of the school of thought that no one has limits unless they impose them on themselves. We don't always choose the easy road but we choose the road that will lead to a more rewarding life in the long run for the kids. I think a really important thing to realize is that it's not only hard for the kids to expand their worlds but it's hard for the parents to push when they would rather hug and hold.
I took a nap today with Baby. And while every day I push her to speak at an appropriate volume and help her work on her auditory processing; when I can, I'll hold her hand while we sleep and cherish every moment.
I cherish all of the joy of just being with them and knowing them and being their mother.