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Why my daughter taught me about protecting my disabled son. By Lisa Carver for Babble.com.

Personal Essay: Taking His Side

What my seven-year-old daughter taught me about protecting my disabled son.

by Lisa Carver

July 30, 2009

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Sometimes it is the most vulnerable among us who are the most eloquent. Because they alone are exposed to the subtly ugly depths a human being will sink to when they know they can get away with it. The victim can’t, or won’t, tell what happened. Or they will tell, and no one will believe them. Or someone will believe them, and do nothing.

That’s the triangle that feeds itself and keeps the abuse going: bully, victim, and the one who watches and does not see. Too often in my house, that last role has been played by me. I can’t fight the whole way of the world. There have been plenty of Miss Sarahs in Wolf’s life before. If it weren’t for Sadie’s still-present sense of injustice, I wouldn’t have done anything about it this time. I have had talks with people like Miss Sarah, and usually it just creates a more stressful atmosphere. I have fired people like Miss Sarah, and sometimes they’re replaced with someone better, or sometimes someone worse, or sometimes not at all. Then I’m sole care provider, and I get more frustrated and more tired. I do not treat my son well, and then start thinking about firing myself. Which means what? Institutionalizing him? Would they be less tired and angry there, because they do only eight- or twelve-hour shifts instead of the sometimes twenty-four-hour ones I do?

I did confront Miss Sarah, and it turned out pretty much as I’d predicted: she tried to pretend it hadn’t been happening and was all Wolf’s fault, but when she saw I was serious (I told her this is Wolf’s home, and I am never again going to walk in the door to hear him saying, “I’m bad. I don’t deserve to live here. Send me back to the mental institution,” no matter who has to be fired), she tucked her tail between her legs like anyone in today’s economy whose $30-an-hour job is threatened and became sickeningly sweet to him. Or maybe it’s real. Maybe she is a nice person who reached the end of her rope, and just needed someone to yank her back up.

We need a national Sadie! Wolf has a micro-deletion in his twenty-second chromosome. The missing part tells the brain the difference between reality and dreams, tells the personality how to charm and put people at ease, tells the epiglotis when to close so we can swallow, and tells the heart how to finish forming. Nature meant him dead; he did die at five days old of heart failure. Modern medicine brought him back to life and keeps him here, but modern medicine doesn’t want to pay enough to give him a good life.

Human life is extended, the money runs out, and the triangle grows. Circumstances are the bully, the very young and the very old are the victims, and the ones watching and not seeing are all of us. We need a national Sadie!

“It’s bad enough in the schools, but in the rest homes it’s worse,” my friend the nurse told me. “Whatever kid’s parents don’t come in being squeaky wheels, they don’t get services; or they don’t get the services the school is being paid for. The federal government will pay for speech, OT, PT, but all it takes is one corrupt director to tell you to not take him out of the class, tell the teacher to work on it with the student in the class. So occupational therapy is now the teacher reminding the kid once a day how to hold his pencil, and federal funding still comes through.

“In the rest home, there was this 105-year-old man. No one came to visit him; his children were dead. My supervisor told me to leave him till last on my rounds. She said to mark him off as having been done, and the night crew would get to him. Then she’d tell the same thing to the night crew. He ended up with bed sores so bad he had to have both legs amputated. Now with Obama it’s just getting worse. I thought it would get better, but instead the Feds are taking over, so they hand out rules from over in D.C., and they don’t see anything that’s actually happening. It’s just providing a longer chain of command, where it only takes one greedy person to steal money that was supposed to be for services for the disabled person at the end of the line.”

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