The internet is a wondrous strange place for the parents of a child with special needs. With the click of a mouse, parents can research information, locate specialists, learn about medical treatment and educational options, and perhaps most importantly of all, end their isolation. All at once, parents can locate a community of other parents struggling with the same issues with which they are grappling. Whether a child’s needs are severe or mild, parents may find much more effective and sanity-saving support from virtual strangers than they can from well-meaning pediatricians, grandparents, or friends.
During a particularly challenging time we were going through with our son, the best counsel I received was from a dad in Australia I found through an internet chat group. His advice was often more spot on than that I was receiving from either doctors or therapists. Yet we all know the pitfalls of finding information and support on the internet. Intellectually we all know that parents whose children are doing well and thriving may not be posting on the different disease- or disability-related forums. New parents who are venturing out into the internet world are more likely to hear the stories of parents whose children are struggling, which can only add to the depression and anxiety of the neophyte parent. But the use of the internet by parents looking for and offering support to others begs the question: are parents violating the privacy rights of their children?
This whole discussion was dramatically crystallized in a series of blogs in the aftermath of the Sandy Hook shootings nearly two years ago. Immediately after the tragic and horrific shootings at Sandy Hook Elementary School in Connecticut, the mother of a mentally ill teenager posted a disturbing and gut-wrenching blog titled “I am Adam Lanza’s Mother.” The author, Liza Long, poignantly wrote “I live with a son who is mentally ill. I love my son. But he terrifies me.” Ostensibly a plea to begin a national conversation on mental health, the blog was published by the Huffington Post and subsequently went viral. It gave a voice to many parents who are struggling to obtain mental health care for their ill children. Ms. Long boldly addressed the deepest fears of these parents: “I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother.” But almost immediately, however, Long’s blog ignited a firestorm of controversy.
One response came from Sarah Kendzior who posted in her own blog, “Want the Truth Behind ‘I am Adam Lanza’s Mother?’ Read Her Blog.” Parsing through numerous prior blog entries from Ms. Long which Ms. Kendzior deemed “vindictive and cruel posts about her children,” Ms. Kendzior concludes, “This ‘national conversation’ on mental illness needs to include the mental illness of mothers and the on-line privacy of their children.” Hannah Rosin, who wrote “Don’t Compare Your Son to Adam Lanza,” damns Liza Long for sharing with the world and perpetuity her fears that her son could be another mass murderer. Jillian Keenan wrote, “Thanks, Mom, for Not Telling the World I Pulled a Knife on You.” Ms. Keenan’s mother, argues her daughter, would have incalculably harmed her by memorializing on the internet this incident which would have been available to perspective colleges, employers, or even partners. Ms. Keenan eloquently goes on to say that who we are as adults should not be determined by our “worst moments as children.” We grow up, we leave those moments behind us, and we deserve to be defined by our best moments as adults.
A year and a half later Liza Long's (in)famous blog is still being cited. Most recently, her son, who is now being effectively treated for a bipolar disorder and has since not had a violent episode, admits that he would have "preferred" that his mother had not blogged about him, although he acknowledges that the blog might have enabled other children to access help. Yet, the law of unintended consequences of Liza Long’s blog begs the question: how well do we as parents respect the privacy of our children on the internet? And it is a question that personally makes me squirm a little.
Our children, and their friends, can Google their own names and find what we have written about them. I’ve written in a previous blog about volunteering with children who are in the foster care system. One teenager I worked with shared his biological father's first and last name and absolutely nothing else; “Junior” had never enjoyed a relationship with his father and knew nothing about him. A classmate who had Googled the teen’s name, however, inadvertently found dear ole’ dad, who was at the time incarcerated for sexual assault. "Junior's" foster mother described the young man’s humiliation, shame, and anger at not only learning this information about his father but also his fears that his friend could potentially release the information to the world should he choose. I would hope that most of us and our children would never share with peers this sort of discovery from the internet. Hopefully none of us has personal or family secrets this deep or ugly. But some of us do, and the last place we would want them aired is on the internet.
We have all lectured our children endlessly about internet safety and what information should and should not be released on their Facebook pages. We’ve warned and cautioned them about the perils of inappropriate photographs or posts that could be viewed or read by potential employers or college admissions officers. We’ve demanded their passwords as a condition of computer use in order to scour what they may be posting in cyberspace. Federal laws have been designed to protect the privacy of minors. Yet as Liza Long’s detractors have queried, how well do we, their parents, protect them? We must look to ourselves about what we write about our children on the internet. Pretty much each of us in this law office has blogged about our children or a sibling. I personally think we do it as respectfully as possible. In my case, my son gives a green light to anything I have written about him. Does my son’s consent make the blogs right? I don’t know.
There is a difference between public blogs (which are sometimes derisively known as “mommy blogs”) and private chat rooms, which can offer more privacy. Whatever you think of Liza Long’s controversial blog, her words clearly resonated with many parents struggling with similar issues with their children and perhaps validated their inner turmoil. Consequently, I would hate for parents of children with special needs to not look for support on the internet. Sometimes it is easier to bare our conflicted feelings to the virtual stranger than it is to our child’s grandparents, whom we wish to spare additional worry; our child’s doctors, with whom we are unable to share the depth of our anxiety for fear of being labeled neurotic; or our close friends, who as caring as they are don’t really know what it is like to be crying in a hospital or doctor’s waiting room after the walls of our world just crashed in. Yet Liza Long inadvertently reminded us how scrupulously careful we need to be about protecting our children’s privacy as we venture out into the world of the internet. And we need to ask ourselves what we may share and what we may not share. There is a line we must not cross. I’m just not entirely sure that I know where that line is.
