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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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“Miss Sarah is not stealing dollar bills from your room.”

“You don’t know it because she put electrodes in your brain!” he cried. “She buzzes them and makes you think she’s right, so you put me in time out. It’s black magic electricity.”

“Sweetheart, that is not true,” I said.

Except it was.

Miss Sarah wears pearls and holds eye contact and fills out paperwork quite accurately. Who would believe her? Everybody. History is writ by the victors. Nobody believes the very young, the mentally ill, the misfits. It takes too much effort to understand them. They’re like that old Native American guy, the only one left of his tribe, and no one but him spoke his language, so who could translate for him?

Luckily, my son has Sadie, his sister. Wolf is fifteen; Sadie is seven. Like most parents of the disabled, I am too tired from fighting for my son, because I have to fight health insurance, doctors, caregivers, school policies, nature itself (my son’s behavior), strangers, my family, and my desire to have a life. I don’t want to fight anymore. These days I pretty much take what help I can get in any form, and unfortunately that means turning a blind eye. The disabled can bring out the bully in anyone, because they are frustrating. My son is frustrating. I can’t keep divorcing people. I can’t fire everyone. So I tend to ignore the distorted danger signals my son sends out.

But his sister is not tired like I am. She makes sure I listen. She still believes in her brother’s rights. “Miss Sarah waits till you’re gone,” she told me, “then she calls him ‘unhelpful.’ She kept humming something after he held his hands over his ears and asked her to stop. She doesn’t do any of those things to me, because I know how to talk politely. I’m not annoying and loud like my brother. But it’s not his fault he doesn’t know how to act. Miss Sarah should help him act right, not make him act worse and then punish him for it. She wants him to be bad. She let him break branches off the tree, because she wanted to watch him get in trouble by you when you got home.”

Suddenly, I got it.

The dollar bills were his pride Miss Sarah was stealing, in tiny amounts, day by day. The electrodes and the buzzing – that was the the reasonable voice and logical cover stories she’d put in my brain about what happened while I was gone, why he’d broken whatever he’d broken, what he’d done wrong that now had him in shame, in tears, punching himself in the head.

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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20

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.”

Personal Essay: Taking His Side

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

by Lisa Carver

July 30, 2009

400x236.jpg

20

“To choose what gets cut, and what doesn’t, is very hard,” my friend the politician told me. “It previously was something that fed a politician’s God-like image of dispensing, but our country has changed to a survival environment. Divisions between Federal, State, County, City, and District have emerged and instead of a collective look at what can be done to help us all, it’s become a look-out-for-yourself atmosphere. The Federal Government steps in to gather up what they can. More control over things they really aren’t qualified to take on when they lack the oversight capacity. This economic catastrophe isn’t going the way I thought. I thought we, as citizens, would be getting together, reverting to a more tribe-like atmosphere. I see the opposite happening.”

“We cannot fill your son’s compounded medicines any longer,” my friend the pharmacist told me, “because New Hampshire Medicaid won’t reimburse us for compounded medicines as of June 30th.”

“But he can only take medicines through his g-tube,” I said. “If he takes it by mouth, it will cause lung damage.”

“Your only alternative is to pay for the compounding.”

His medicines are thousands of dollars a month.

“Dear Parent/Gaurdian,” Office of Medicaid Business and Policy told me on July 1st, “your child will remain eligible for Home Care for Children with Severe Disabilities Medicaid only if the cost for providing home care is no greater than the cost of institutional care. This is a Federal law effective immediately.”

The federal government is now forcing us in the home to behave like institutions. His hours of home care services have already been cut in half. Now that he’s entered adolescence, his anxiety has skyrocketed, and so have his needs. Now I find out I have to find a way to cut these services even more, or else give him up to some institution?

He did not ask to be born this way. I didn’t ask to be in charge of someone with such difficulties. But he is, and I am, and the federal government is now forcing us in the home to behave like institutions: cut corners and fudge records in order to help the government not pay more, always at the expense of the recipient: the one who needs care. It’s not bed sores and amputated legs my son is in danger of. It’s suicide. Or a long life of getting not enough care or substandard care, of being used and ignored and abused and taken advantage of and fattening someone’s wallet. His sister can’t follow him around everywhere, protecting him, and the federal government doesn’t listen to her anyway.

And it’s not just my son: until there’s a better system of care, how many at-risk children will have dollar bills stolen from their rooms?

Article Posted 6 years Ago
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