Posts Tagged ‘internet privacy’

On writing about my kid

November 16, 2012

Whistler's mother, with a laptop

image courtesy of Mike Licht, NotionsCapitol.com via flickr

Kids are great fodder for writers, as A. A. Milne and Anne Lamott, to name a just a couple, have demonstrated. And as long as adults have written about kids, I’m sure those kids have been flattered, or enraged, or a little of both.

On the internet, everyone can be a storyteller. With so much talk about protecting our kids from internet predators, little is said about biggest violators of our kids’ privacy: us. Parents. Parents whose Facebook profile pictures proclaim “I AM my child.” Parents who document every milestone and every setback online. Parents who won’t have to drag out the photo album to embarrass their son in front of his date, because she will have seen all his bathtub baby shots on Instagram before she even agreed to go out with him.

Most writers who expose their kids as part of their craft think about this carefully. And so have I. I try to keep the focus of this blog on my experience, not Chloe’s, and I use only the details that I need to illustrate larger points. Most importantly, though, I ask myself, “if she reads this as an adult, would she be pissed?” Though it’s an impossible question to answer.

Having a kid with a disability puts a few more layers on this topic. Special needs parents experience parenthood differently, and we have different reasons for writing about our kids. And different pitfalls. I can’t speak for all special needs parents, but here are some of mine.

I have better stories.

I’m not saying I’m a better storyteller, and I’m not saying our lives are one meaningful experience after another, though there are plenty of those. I mean crazier, more dramatic, more terrifying stories. Most of which I have not put on this blog.

Medical emergencies, for example, can make important and meaningful stories. Isabel Allende’s tragic story about losing her daughter, Paula, helped me through the hard times of my own daughter’s hospitalization. And for many special needs parents, a harrowing trip to the ER is not a question of if, but when. Will our kids appreciate their most vulnerable moments being trotted out for the world to examine?

I’ve spent a long time feeling alone with my stories.

Discovering parents who were going through the same thing made a huge difference in my life, and I hope I can do that for other parents.

It’s hard to explain life with Chloe.

People don’t know what to ask, or if they should ask. And when I try to explain, I often don’t know where to start. Explain cerebral palsy until their eyes glaze over? Focus on Chloe’s strengths and end up sounding like every other annoying proud parent in the world? This blog is a shortcut, a visitor’s guide to our lives.

I run the risk of making my child into a perpetual patient.

When Chloe was about three years old, she began to get angry if we talked about her to other people. I’m sure this bothers all kids, but for disabled kids, it can really get out of hand. Besides going to the doctor (where she hears her disability discussed in detail), Chloe also has to listen to long discussions about her motor, cognitive, verbal, digestive, etc. skills at the orthopedist’s, neurologist’s, neurodevelopmental pediatrician’s and orthodist’s offices, as well as at countless therapy appointments. This must make her feel like a collection of symptoms and problems, rather than the whole, wonderful person that she is.

On top of that, she was sitting through long discussions about herself among her father and grandparents and me, until she finally got her point across and we got more discreet. And for many disabled kids, the endless discussion of their problems continues on the internet. So I try to make this blog about the many important parts of our lives that take place outside of the doctor and therapists’ offices.

It’s possible Chloe will never see this blog.

I’ve told her that I write about her, and asked if that’s okay with her. I’ve even read posts to her. But although I’m pretty sure Chloe can read, she can’t control a mouse or a keyboard, so she won’t be stumbling onto this blog anytime soon.

This is not an excuse to violate her privacy, of course, especially since technology and/or treatment for CP could solve this problem for her in the future. But there are disabled kids out there who aren’t capable of understanding or caring that their parents are strewing the details of their lives across  the internet. And there are kids who do understand and care about privacy, but lack the communication skills to express that. What about their privacy?

As indignant as I can be about the offspring-as-Facebook-photo phenomenon, I know that I can easily fall into the trap of confusing my identity with my child’s. I sometimes think that, as Chloe’s mother, I have direct access to her experience–that I can understand, through her, what’s it’s like to live with a disability, that her stories are mine, to use however I want. But Chloe is her own person, and her disability is hers alone. In this blog, and in all my conversations about Chloe, I have to keep reminding myself to draw the line. It’s important to tell our stories, but not at the expense of her privacy.

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