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Terri Mauro

Whose Life Is It Anyway?

By December 19, 2012

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Have you been following the controversy over the blog post "I Am Adam Lanza's Mother"? Liza Long's description of her son's challenges and the failure of the mental-health system to provide any meaningful help has ignited debate over whether, under any circumstances, it is acceptable for a parent to compare her child to a mass murderer in a place where people can read it, see her name, and figure out who she's talking about. (You can read many posts responding to it on my listing of autism-related commentary on the Connecticut shooting; find Long's post about halfway down, and many of the posts that come after that will address it.) That, of course, leads to a deeper question of whether writing publicly about your children, particularly your children with special needs, is such a violation of privacy that it's always wrong, whether you mean to be negative or not. Are those of us who do so exploiting our kids to further our careers? Ought we to keep secret journals tucked far away from prying eyes, or write only in such vague generalities that nobody could mistake us for people with personal experience?

Honestly, I can see both sides of this. It is a violation. That is unavoidable. I blog about my kids without mentioning their names and showing their pictures, but my name and photo are right there on top of every post, so who am I kidding? If any of my posts ever went as viral as Long's did, nobody would have trouble making a connection. Yet it's hard to imagine how one can write about parenting children with special needs without living that life -- most of us have had the experience of receiving advice from the clueless or the vague, and who wants it? It's the personal details that make the information compelling and meaningful, whether we're sharing triumph or heartbreak, whether our readers are seeking a solution for a specific situation or just a shoulder to cry on. It's impossible to imagine the special-needs blogs I love most, like Love That Max and Fighting Monsters With Rubber Swords, without those very specific children's faces and dialogs and life experiences. I know how much specific stories of specific kids and situations helped me when I was first trying to figure my own children out -- by providing examples to follow but also ones to avoid -- and I hope that I can pass that on by sharing my own experiences with my kids.

That my own experiences involve real children who didn't exactly sign a release is, to be sure, a moral dilemma, one many parents -- of typical kids as well as those with special needs -- simply choose not to engage. It's also hardly new to the blogging age; people have been writing memoirs about their kids for way longer than there's been an Internet, but maybe something that goes through a lengthy publishing process is less intimate than something a parent dashes off in a moment of emotion and is instantly seen in people's living rooms. Do you think parents of children with special needs should stop blogging about their kids, or only do it if the stories are good or the worries don't reflect badly? Share your thoughts in the comments.

December 21, 2012 at 10:50 am
(1) Jodee Kulp says:

Your points are well taken and as the co-authors of the Best I Can Be series of Living with FASDs, our daughter as an adult (age 26) now makes her own statements about her life and our family. Sometimes I wonder if we lived in the same house those 17 years, through I realize all of us have different world views and I respect her vantage point. Today, I very rarely share any new stories and have stayed quiet on the personal parenting front for quite some time because she has stated, ‘this is her life and she will share as she chooses.’ I need to respect that. She has given me permission to share some of her child stories when I speak without her and she speaks on the MOFAS Young Adult Panel and she says what she chooses when she joins me in speaking. It is her choice. At 13, she asked to share her story and we obliged by co-writing the first book, shared our case notes in the second and she wrote the third at 23. It did open our family up to everyone, we remained in the fishbowl and when she struggled in her late teens/adult transition we were all judged sorely. But the good news is she is a vibrant young adult now living purposefully with the challenges of fetal alcohol spectrum disorders and I have moved on to writing fiction. As she says, “I am not my disability. I am my abilities.”

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