Thursday, January 17, 2008

stand under

I watched a tv show the other day about a mom who was trying to lose weight in a 6 month supervised program. She had an autistic son who was older, maybe 15 or so. As they showed her "life" on the screen, they showed how physically strong the son was, how much work he required, how much work the family was required to do, and how hard the mom had worked to keep him at home all of those years. They were going through the process of evaluating him to decide if he would be able to live in a group home, or if he should stay at home. It was a veritable rollercoaster ride of emotions. In the interviews with the varying "experts" in their field, she ended up talking to the "self esteem expert" about how her life was going. He told her she had spent way too much time on her child and family, and she had neglected herself. He said it was high time she take care of herself and her looks and focus on that instead. As I watching, I realized he did not get it. I also realized most people will not get it. However, I got it! I live it! I totally understood where she was coming from and how unimportant her outfits, hair, and makeup were when she was watching her son get moved to a care facility away from her home...keeping in mind the son was totally non-verbal and probably was very confused when he was taken to the facility. I think there are some things that are non-understandable by most others, when you are living with a disabled child. It's not all roses and puppies and sunshine...it's changing diapers for 13 1/2 years; getting stares while shopping; feeding your 10 year old so the people next to you don't get food thrown on them; eating cold food; wiping drool off furniture; cleaning windows non-stop; being woken up for two weeks straight while your child plays in his room for 3-4 hours every night; dealing with a host of medical concerns and medications; all the while wondering if your child even likes the color blue or pudding or kites or the outdoors. Granted, it's not all morose and sad all the time, but it's not a joyous picnic, either, and watching that mom made me realize just how clueless we all are about the people around us and the lives they lead. Hopefully I'll come out of this experience much less judgemental than I was going into it. And to the guy who was interviewing her while wearing his blue glasses and carrying his purse with his hand on his hip...it just may be that there are more important things in life than the type of clothes we wear or the way we style our hair. Just walk a mile in her shoes, buddy, and see how practical that purse and blue glasses are at the end of the day.

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