Sunday, May 07, 2006

A Picture Paints a Thousand Words

“You’re different”, I said. Lonnie, responded quickly and urgently, “Nooooo, I am not” he said, as he talked out of the side of his mouth, his speech slurring and the slobber running down his face. “Yes, you are”, I said. And the conversation trailed off and quickly changed. The only difference was that the conversation didn’t have an ending. We didn’t fight over whether it was true or not; I had merely made an observation, as school kids do, and he denied it and that was the end of it. We kept playing some more and soon finished our game, Sorry.

Lonnie was our next door neighbor and a few years older. He had a slim build, blond hair and glasses. His body was all twisted and never straight when he stood. At the end of his legs were these huge metal braces which kept his feet straight and these worn, brown, high top leather boots of some kind that fit over the brace. There were scuff marks on the toes where he would scrap the ground as he dragged his shoes when he tried to walk. He walked with two metal crutches that fit over his arms. The arms were padded so it didn’t hurt. His speech was slurred and he seemed to talk out of one side of his mouth. He slobbered too when he talked. We didn’t really care, I guess. He was just our neighbor.

We placed softball in the street every night. I never seemed to notice that he wasn’t there or that he was never outside. The little yellow school bus picked him up every morning for school and yet, it never once occurred to me as to why he didn’t go to school with us. We thought of him as a cripple, as I recall. That was not derogatory though, it was just the only term we knew of that fit and the only term that was used at the time, almost forty years ago, to describe kids like Lonnie. We never said it aloud to him nor did we spend a whole lot of time thinking about it. It was just the way it was.

Looking back, we really didn’t know anything different. I say we, as in my sister and I, and the other neighborhood kids. We would occasionally go over to his house and play and it really wasn’t any different than what we did at anyone else’s house. I do remember the van though and there was a wheelchair for him. The wheelchair wasn’t used very often, just for transport, and the rest of the time, he used those crutches.

When Dear Son was born, I never gave it much thought. I had no idea of how to care for him really, in terms of the special chairs or devices that would make caring for him easier. Things like a feeding chair would make it a lot easier, but I wouldn’t learn about most of these things until a few years later. Dear Son was three when he got his first wheelchair. I used it for transport and feeding but quickly decided that I wasn’t going to use it much in my home, since having him sit in the chair like a vegetable, seemed like a pretty boring way to spend the day. It also upset me. I liked to let Dear Son play on his back or on his belly and then he would be smiling. I decided early on that whenever he was happy, we were going to do more of that activity, regardless of whether the therapists thought it was good for him or not. He couldn’t roll over so he’d play one way or the other, on a mat or a blanket, or simply in his playpen. His favorite spot, was the French door that opened to the back yard. He would lie there and look out at the pond and listen to the ducks and birdies, that frequented our bird feeder or just catch the breeze that went over his head. Frequently, he would scoot around the floor on his back, using one leg to propel his body forward. It wasn’t that I didn’t like the wheelchair but it just seemed like when he was in it, he looked disabled. Also, when he would sit there, he wasn’t living, he was existing.

I decided early on that I wasn’t going to take pictures of him in his wheelchair. I remember throughout the years, seeing a picture of someone in a wheelchair on a co-worker’s desk, and I always saw the disability and never the child. That is why, in all my pictures of Dear Son, you will never see a wheelchair, unless the picture was taken at school. I learned to get very creative in my pictures, such as taking them in the wagon or a chair or anything with some back support. I wanted people to see Dear Son, not his disabilities. In the last few years, I have had to change though. He’s getting too big and he can’t support himself well enough to sit in a different type of chair and I can’t dead lift him off the ground, so I now use the wheelchair a lot. It’s funny though, because I no longer see the wheelchair, I just see my son. Amazing, how things have changed.


Wrkinprogress said...

I'm so glad I ended my day with you, Dream Mom, and with Dear Son. You are both so precious to me and my hubby -- you're like our family, even though we've never met.

Peace be with you both, from now until the end of time.


Cathy said...

As a preschool special ed teacher, I always try to take the child out of the wheelchair for a picture, especially since parents want to see their child photographed out of it, many of them are getting their wheelchairs for the first time. We use the wheelchairs in our room for transportation. In the classroom, they are on the floor, in Rifton chairs, or other adaptive chairs if possible - Only when the child needs the chair for posture or support and other chairs don't do the trick, do we keep them in there.
I am so glad I found your blog.

Cathy said...

Oh Oh, there is now two of us...:)I will start signing mine with an A. on the end.

Dream Mom, I just can't tell you how much I've come to care for you and Dear Son. You are both in my thoughts daily.

Cathy A.

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