Why my daughter taught me about protecting my disabled son. By Lisa Carver for Babble.com.
What my seven-year-old daughter taught me about protecting my disabled son.
Personal Essay: Taking His Side
What my seven-year-old daughter taught me about protecting my disabled son.
by Lisa Carver
July 30, 2009
“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.
Boy, your daughter is going to appreciate this burden later. As the sister of a disabled boy I can only say that you are helping her make a life of misery. Be a mother to your daughter. She’s not your confidante.
First, martinflaps, I disagree with your reading of the article Her daughter is not her confidante; she was using her daughter’s perception of the truth about her son’s mistreatment to illustrate that sometimes the child can see the truth of things that adults- or maybe just the author- have a hard time seeing. I saw nothing in the article that put any burden on the daughter, or suggested that the daughter is not being parented.
But second, what is wrong with you? The author clearly has a pretty hard burden in her life, parenting her kids. Why would you post something so mean? Even if you think it, who does it help to post it?
Wow…
I can’t imagine how difficult it must be to manage a life like this, when a life with no real problems can be challenging enough for so many of us.
Good for you for trying to parse it all out.
Shame on the system for making it harder than it needs to be.
Your daughter sounds like a good girl. I’m sure you will appreciate her and take good care of her, too.
What the hell is wrong with you, martinflaps? You read that entire heartfelt, thoughtful piece that THAT is your only comment? I suppose disability comes in many forms, including disability of the soul.
Well in defense of flaps, it sounds like she has had a burden to bear, too…
Thank you for sharing– this is the first I’ve heard of the government doing this to families like yours. What advocacy groups are out there that could make this more public knowledge and get the ball rolling on some intense activism??? When CEOs are enjoying million dollar bonuses fed to them directly from our pockets, there’s no excuse for cuts like this.
i worked for a period in college in a residential group home for severely disabled kids. most had daily therapies — physical and mental exercises that would/should ease their handicaps or at least give them structure — prescribed by various OTs/PTs that plain just weren’t adhered to by the daily care staff. no one was to blame, i suppose, as the prescribers didn’t realize the burden and the staff to child ratio, but in the three months i worked there, trying to do everything that should have been done, i got a very small taste of what it might be like living with and caring for a disabled child. absolutely, utterly exhausting. “institutions” aren’t routinely terrible, but even in my few months there i could see kids who had functioned in certain ways begin the slide into giving up. no one loves our children, despite our crabbiness, short tempers and feelings of being ill-equipped — like we do. what a hard thing and i hope you’ve got family to share the burden.
Isn’t anyone confused by this article? It started out about her daughter and her ability to help her see her son anew, and then it became more about healthcare and the Feds? I’m surprised this got through the editing room.I didn’t see a clear enmeshment between the daughter and the mother, I think it’s just a fact that resulted from having one disabled child and one child who wasn’t disabled. I wish the article had been more focused and delved deeper into her relationships with both children, and not gone on a rant…
Um, I feel ya? Read deeper. Carver’s trying to show us that the old healthcare system has exhausted her — and everyone else — and not helped anyone, and the only hope is people like her daughter (aka: a new system that hasn’t been exhausted of its resources — people, money, etc.). But sadly, no one takes a 7-year-old/the reality of the situation seriously.
This story is about so many people, not just Carver’s son. I appreciate her honesty — the fact that she wants to, and sometimes does, give up.
The only confusing thing about this article is that’s it’s true. How sad for us all.
It’s kind of 2 articles merged in one, they should have been separated. Now it’s curious that the writer and the woman she cited perceive the budget cuts as happening because of “Obama” when everyone knows the economic crisis was created by W. Bush’s administration and we’re still suffering its effects. In some states the crisis is worse, such as California, so it’s not just about the “feds”. Also, Obama is trying to approve a plan that will extend healthcare benefits to the entire population so it’s completely false to argue that his administration is making matters worse.
That said, I feel for the author because I too have a special needs child and am very concerned about how he’s being treated when I’m not there to protect him.
wow, lisa carver looks so preppy in her author picture.
Thank you for being one of the few to pull back the curtain.
Obama is not solving the situation. It will be economically undesirable to help our disabled children.
Thank you for the thoughtful and touching article. I completely see the connection between the beginning of the piece (Miss Sarah) and the end (the government), and I found the whole thing to be very powerful. All the best to you and your family. Your son and daughter are both so lucky to have you on their side.
Interesting: When I first read this, I was under the impression a father had written it.
With the cuts in care for the mentally disabled, mentally ill, physically disabled and the elderly that have been made in the last 25 years one might get the impression that our government and our insurance companies wish these sorts of people would just die and stop costing so much money. The true sign of how civilized a society is is shown by the way they treat their weakest members. We are truely barbarians. My heart goes out to this boy , his mother and their circle of loved ones. It is so difficult to watch some one you love struggle so much.
I love how this poorly written article was used as a cover to bash the current president. So many of you Americans are clueless about social healthcare. In the Netherlands we have social medicine and our children are the happiest in the world. Children with special needs go to apart schools because they get extra help, the playgrounds are custom made for their needs, the parents get extra help at home from every level of government and extra time off from work to give them time to care for their child. Don’t knock something that you know nothing about.
To jd solait, the netherlands is the size of rhode island. i applaud the netherlands, i am in awe of the netherlands but you have to realize the difference in size of these two countries before you say how stupid we are for not having nationalized healthcare. also, my father’s wife is dutch and lives in both countries. when she has medical problems, where does she go? American doctors in american hospitals because they are better and faster and although expensive, she gets results quickly. I am not saying it is the way, i am ashamed of my country and the way it takes care of people but comparing it to the netherlands is just not such an easy or simple comparison.
The government does not have enough money to pay for healthcare for 300 million people. And my tax money isn’t going to the smoker that’s dying of lung cancer…. You see what I mean? It’s one thing to say we’ll take care of the young, old, and disabled and it’s another thing to say “everyone” should have socialized healthcare…. Medicare and medicaid are running out as it is…..
Just a question – how high are taxes in the Netherlands to cover the healthcare?
Oh, and what was the last medical break-through that they came up with and when was it?
Its sad all around. The article was heartbreaking, however the political tone of it was a little ridiculous. The healthcare system has been generally sucky unless you have the money to pay for the services you need. From the sounds of it, the amount of help and medicine required to keep this child alive are immense. I don’t think it has anything to do with the ‘govt’. The bottom line is, at the end of the day if someone needs round the clock care it is going to cost round the clock money.
God bless you and your family, I could only imagine how torn I would be if I was in your shoes. I am under the assumption that I would have him institutionalized for the greater good of my family as a whole. But you never know what you would do until you’re actually in the situation