Two birds with one stone here, folks. First, you’ll know how I decide what to share with you, my lovely readers, because apparently? Some people care (and care deeply!). Second, I’ll have a link I can email to said people when they express their concern about Carter’s lack of privacy. I’ve written on this topic in vague terms here and here, but it seems I need to be a bit more explicit.
For the record, just because you call it concern doesn’t make it so. Concern and criticism are different; please take some time to learn what that difference is. I have gotten some of each and really, there’s no comparison. The people who write to me with genuine concerns make me think, and deeply, about the choices I’m making and why. I have learned a great deal from reading and responding to those messages. The people who criticize me? You just make me want to punch you in the knees.
And how productive is that, really? I’m pissed off; you have busted knees; and no one is listening to you because you? Are a jerk.
Aaand now that I’ve gotten that off my chest, let’s move on to the matter at hand.
Every writer of creative nonfiction, whether for a blog or a book, a magazine, journal, or the family’s annual Christmas newsletter, has to make some big decisions. How much should I reveal of myself? Of my family? My children, spouse, parents, friends, siblings, co-workers, pharmacist, hair dresser, and the woman behind me in the line at the grocery?
How much? And what?
I would really like to think that readers would give me the benefit of the doubt (Most do, of course, but there are always those few who need to tell me all the ways I am wrong.) and assume that, while I may make decisions that are different than the ones you would make, I love my family and am making my choices carefully.
First? Let’s address the issue of my naïveté because that one, being completely and unequivocally wrong, is easiest. I know damn well where I am and what the internet is. I don’t share all that I do because I think nothing bad can ever come of that; I share all that I do because I believe (strongly) that it’s worth the risk. I have been victimized on the web several times, most recently about four years ago when a large cloth diaper company had its gallery stolen by a fetish site. Among the stolen pictures were more than a dozen of Carter. I know where I am; I did not just fall off this particular turnip truck. The people who tell me horror stories and call me foolish, ignorant, naïve, or (in one memorable case) a “hug [sic] fucking idiot” are wasting time and key strokes.
Can’t you feel the love? The genuine, heartfelt concern?
Sorry; sarcasm is my default state.
Anyway, back to it. To those who have accused me of exploiting my child for financial gain, I thank you. If you believe that I will, someday, make money off of this? You must think very highly of me. I do hope, someday (soon? please?) to make money from this habit of using letters and words to make stories. First thing I’ll do when the buckets of cash (snort!) come rolling in? Double Carter’s occupational therapy sessions.
I am all exploitative like that.
Let’s do my favorite one next because it’s amusing, and it’s the one I’ve probably gotten most often. A direct quote from one email, “Why do you share everything about his life? Doesn’t he deserve some privacy?”
I’m a wee bit perplexed. When did I say that I share everything here? I do not. Perhaps it seems that way to people who are raising neurotypical children; some of things I’ve written here are dramatic, frightening, even shocking. It may seem like I’ve let the blog into every darkest corner of Carter’s illness, but there is more. Some of it is worse; some of it is simply private, and I have my reasons for holding back the things that I hold back. Sometimes the reason is that Carter said, “Don’t post that!”
My bright dream is this: someday, when Carter is an adult, he and I will write a book together. We’ll tell the whole story of his childhood, his illness, all the darkest symptoms and all the shining joys, but there are things I will not share without his adult consent.
This last one is sometimes very sensitive for many, many reasons, perhaps most easily understood by people in the special needs parenting community. We are constantly walking a fine line between the optimism that keeps us moving forward, and a realistic assessment of the possibilities.
That line? So fine that it’s sharp. I cut myself on the damn thing all the time.
People want to know if I’m not hobbling Carter, making his problems known and thereby causing him future problems when he wants to go to college, get a job, find a romantic partner, etc. I’m going to tell you something now that makes most people recoil in horror because it makes me seem like a pessimist: the likelihood that Carter will grow up and live independently is small. The likelihood that he will grow up and go to college, have a career, or have a stable relationship are much smaller.
In no way does this meant that we have given up on him. We are doing everything we can to help Carter gain the skills he needs to have a happy, productive life. I don’t really care what that means; whether he lives independently, in a group home, or with us, I’m all good. Suicide, life in prison, or losing him to the streets are the things I’m interested in helping him avoid.
In some sense, it seems to me that the work of public advocacy naturally falls more to parents of children who are seriously ill. If Carter was mildly ill and had fewer other disabilities, maybe I would choose differently. If he had a better chance of overcoming his many challenges and living an independent life, perhaps I would be more concerned about outing him before-the-fact.
Kids surprise their parents every day. If, someday, this blog is a stumbling block for Carter? I will be overwhelmed with joy and I’ll do whatever it takes to fix that problem for him.
I read quite a few anonymous blogs by parents of children with mental illness and I respect that choice. But I also know that it’s very unlikely I would ever be asked this question if what ailed Carter was cancer or epilepsy. Carter has no more to be ashamed of than any child with an illness of body instead of an illness of mind (and it isn’t like those two things are different, but I’ll leave that for another day). If he suffers from stigma, shouldn’t we blame the stigma (and the society that props it up in a million ways small and large) instead of his mom and her blog?
After the very best parenting that his dad and I can offer him, what Carter needs most from me is that I do my part to change the world. More health care services, better education, less stigma, more understanding…that’s what Carter needs.
I am only one voice, true, but I am one of thousands of people who are prepared to make noise until we die or things change, whichever comes first.
They are TOO talking about blogging!