Lately I have been reading "Carly's Voice." Someone on facebook posted a video of her story and I was really taken by it, I have watched it several times since then. The book is written by her and her father, Arthur. Carly was born severely autistic. Her mannerisms were extreme, her energy was intense, and her out burst were frequent and nerve wracking, and on top of all that she could not speak. She is a twin and her twin sister is not autistic. So I think that made Carly's issues even more noticeable because her parents were watching her sister develop at a normal pace and then there was Carly. A large portion of the book is about all the different therapy they tried and all the different doctors they visited. They were constantly taking her from one doctor to the next trying to get some break through. As I was reading I couldn't help but think, "this is a little overboard, she's autistic deal with it." Isn't that awful that I could think that?! And then as I kept reading I realized they were desperate, utterly desperate to help their daughter. Their thought process was, maybe if we caught it early enough the switch can be flipped and our daughter will have some relief. The responsibility of caring for Carly was non stop, around the clock. It was literally wearing her parents into the ground. Here is an example of something weird Carly would do, at around 3 or 4am Carly would wake up (almost every morning) and rip all the sheets and blankets from her bed, take off her clothes, and then take all the drawers from her dresser and dump the contents on the floor. As I read that I imagined what that would be like, every day, to walk into and clean up. I would probably cry. Or she would walk into the kitchen and dump the contents of a cabinets on the floor. Remember, she can not talk, so one of the therapists goals was to try and find some way for her to communicate. They were hoping this might alleviate some of her agitation and out bursts. Well, as the age of ten she did something no one ever expected her to do, she typed. Carly was with her two main therapists and was having a hard time expressing what she wanted, she grabbed the laptop on the table and typed, with one finger, HURT and HELP. Then she walked behind the couch and threw up. Since then she has made quite the name for herself and for autism. I have been amazed at the things she has written and smart and caring she is. She talks about how she really wants to be like other kids but she is inside a body that sometimes she can not control. She also writes about how she wishes people would not get mad at her for how she acts.
This book has opened my eyes a little bit more to how much mercy I need to give to people. I truly do not know what it is like to be in someone else shoes. I think if I had to walk in Carly's for a day and deal with the suffering she deals with every minute of the day, I wouldn't make it. I love this girl. I hope to meet her one day, I'm not sure how. She has her own facebook page and is on twitter.
Sometimes I find myself thinking things like...
"They just need to..."
"Man, their kid is so..."
"Why do they do it like that?"
"They should do this and then their lives would be better."
I am making judgements about things I know nothing about. Tears I do no see and progress being made I can't see because I do not know where they started from. There actually could be a lot of progress being made.
I see this with my own kids. They are fighting battles I know nothing about, young though they may be. I'm trying to look at a bad attitude as an opportunity to pray for them instead of nailing them for the mess up.
Once I did have the opportunity to walk in someone else's shoes. It was before Clayton and I were married and I was working at Panera. I worked at one of the larger ones and when the lunch crowd hit it was craziness. I loved it! I loved helping people and I especially loved how the time went by more quickly. Everyday, a little before lunch Mindy came in for her short shift. She was autistic and I loved her. She loved the color pink and her aid that brought her to work would take her to the mall first to walk around and buy something pink. Usually it was fluffy or sparkly. Mindy was in her thirties, but you wouldn't know it. This particular day she wasn't coming in, I can't remember why, but my manager asked if I would cover her task. She probably asked me because she knew anyone else would have thrown a fit to do this job. Mindy's job was to run the dishes through the washer, wipe off tables in the dining room, cart the huge and heavy containers full of dirty dishes to the back, AND empty the trash. I had heard my manager correct my fellow employees more than once for complaining about Mindy by saying she really has the most difficult job of us all. Well, that particular day I was running my tail off! It was impossible to keep up with everything. The line needed soup bowls, there were tables that needed clearing. I wanted to cry. I was out of breath and smelled like sweat and dirty dish water. I made it clear to my fellow workers, Mindy DOES have the hardest job and we need to help her. I really do not know how she handled everything and the amount of stress that went along with it.
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