Friday, December 14, 2007

Maybe someday

I can not begin to understand what growing up feels like to Ben. We have been dealing with changes in behavior and endurance which seem so be associated with changes in his daily life as well as an increase in social awareness. It is becoming more and more apparent to him that he is different from most other children. I HATE THAT! Being a kid is hard enough. One of my biggest wishes for Ben is that he would just see himself as one of the gang. Maybe one day I keep telling myself. Maybe one day it will get easier. Maybe one day he will be so insulated by friends and loved ones that he doesn't feel the stares or notice when others stop and turn away. I keep hoping that maybe one day. We have never isolated Ben. We have never shied away from typical children. I have always been more that willing to cry myself to sleep so that he has the kinds of experiences that other children have. I am a very social person (yes I make friends in the check out line) so I have always put myself out there in the hopes that if others see how comfortable we are and how we are like every other family, they will stop giving us such a wide berth. From the beginning we have been treated as if you can catch what Ben has. Parents have pulled there children away (Stop protecting us! We can protect ourselves!), children walk up to me and ask "whats wrong with him?" (try asking him to play!). Now that he is older the "maybe one day" seem further away than ever. He wants so badly to play but can't do it like everyone else. We watch what others are doing, find the things that Ben may be able to do and teach him how to do it. Now he is watching others and trying to play there games. Turns out that when he tries to rough house on the climbing toys he can't push at others with his hands or he will fall on his face. So he accommodates by pushing with his head. Might not seem like a big difference but from today's experience I'll tell you that it is. When everyone is pushing with hands and Ben tries with his head he is quickly told "don't touch me!" and then everyone moves away from him. Again. If everyone is screaming and Ben roars everyone moves away from him. Again. It is as if his motor differences magnify anything else he does and makes it really different. How is a child that could not move independently for the first 18 months of his life supposed to learn the social lessons that everyone else learned during this time when the bigger you get the less socially acceptable differences are ? At one point today Ben put his head down and pushed another little guy. Kid reached out and pushed Ben's head off of him and Ben reacted with a happy "whoa". I wanted to kiss the kid for treating Ben as he would anyone else. Ben was so happy just to have a moment of interaction. It lasted for about 2 sec. then the boy moved away. Again.

1 comment:

Allison said...

Hang in there! You are doing such a great job. This is not going to be an easy road for you, Ben or the rest of the family but you are stronger than you give yourself credit for and the love in your family is far beyond many!