Wednesday, February 27, 2013

Anonymity

I light of some controversial posts in the post-Newtown America, there's been a lot of talk recently about the degree of anonymity we afford our children through our blogs, our Facebook pages, and the like.  Are we compromising our children's safety in a world in which some people think that autism is something to be feared?  Are we recording details of life that our children might not want others to know one day?  Where do we draw the line between telling our stories and connecting with others and our children's need for privacy?

What I'm also finding is that some parenting bloggers suddenly find themselves in a position in which they feel the need to justify why they write.  Special needs parenting bloggers find themselves under the spotlight even more, as we receive calls from others wondering why we write about our children, why we "out" them as having autism and various disabilities, and why we make it so public.

My answer is simple - autism is nothing to be ashamed of, and I refuse to treat it as something unspeakable.  Discussion, understanding, and education are the only things that break down the barriers of ignorance that the world puts up against our children.

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To provide some perspective, this is how I approach deciding what to post and what not to post:

While I use our real first names and pictures, I keep our last name a secret.  I also keep the names of providers/therapists/and doctors a secret, using pseudonyms for all.  I do this for two reasons: there are some real creepers out there (luckily, I've yet to run across one here) and for my son's future anonymity.  If he wants to read what I've posted about him one day he can, but a future employer, friend, or significant other won't be able to search his first and last name and find anything.  And let's be real - how many people his age out there are named "Jack"?  While someone might search website after website looking for pictures of Jack when he's a toddler, I have to realistically say that I probably don't have quite the reach to make my kiddo a household name.

Some readers do know our last name, but that's okay.  I post my posts to my personal Facebook page.  Friends of mine read this.  A select few other autism bloggers also know my last name.  I keep a strict policy of deleting any and all comments on my blog and/or Facebook page that reveal our identities or information someone might use to find us (like the specific name of our city or Jack's school).

When deciding what to publish, I never publish anything that I wouldn't just tell any personal friend or family member about our lives.  I think it's easy for people to forget this, but back in the days when we were children, we didn't exactly have tons of "privacy", either.  Instead of publishing stuff on Facebook or a blog, our mothers just called all of their friends and shared parenting stories.  It's how they kept in contact.  Now, we don't just call friends and shoot the breeze the way our parents did.  Instead, we share information and keep in touch with increasingly larger networks of people via blogs, Twitter, and Facebook.  They are the new snail mail, telephones, and moms' groups all rolled into one.  If we argue that sharing stories about our children in this way is an invasion of privacy, then we also should not share stories face-to-face with our fellow parents.  In fact, I'd argue that the face-to-face retelling of parenting stories is more of an invasion of privacy, because the recipients of that knowledge also know exactly who our children are and can convey those stories to other people within our children's social circles.

I don't publish every thought that comes into my head.  Just as there are not things that I share with everyone I know personally, so do I not share every aspect of our lives.  I strive to be open and real, but there are things - both within our family and about Jack - that no one needs to know.  As he ages, the list of what does and doesn't get shared with the world about his life will likely increase, but doesn't it for all children regardless of their diagnosis or lack of one?

I don't share things that are directly hurtful to my son.  Now this might be where some might disagree with me, but I don't think that talking about the realities of raising a child on the spectrum is directly hurtful to my son.  I think that there is a difference between saying "This life's tough sometimes" and saying "My child is bad".  In the same way that a mom with twins might complain about the extra work or a mom of a toddler might complain about the "Terrible Twos", so do autism mamas need to vent from time-to-time.  Would people accuse that mom of the two-year old of publishing posts that would make her child feel awful one day for being a typical toddler?  Of course not.  Nor would I expect that toddler as an adult to look back on those posts and think "I made my mother's life miserable" and feel bad about themselves.  I just try to be sure that there is always more of the "My son's the greatest person on Earth" than there are the "This special needs parenting thing can be a rough gig" sentiments.  I want my child to be able to look back at this and say "My mom didn't blame me for any of it.  She tried to understand and help and work with me as best as she could.  And above all, my mom loves me."

Really, I don't want to demonize autism, because I know that what others think about autism they too will think about my boy.  I have to bear that in mind when I write.

I don't say things that are directly hurtful to others.  By this, I mean that you'll never hear me call someone out by name (or blog name or Facebook page name, except in the case of last week's post Simply Evil, in which I called out a page that had been taken down for abuse and - therefore - no longer exists).  Rather, I tend to speak in generalities so that no one person feels the brunt of a post.  Along these same lines, you won't see me calling someone out for what they say online.  I've seen a lot of people doing that lately all in the name of promoting acceptance, which I definitely understand.  However, calling people out directly seems wrong regardless of how much they have offended me.  I shouldn't get page hits as a result of harming someone else, because two wrongs don't make a right.  In the past, I used to call out the media and celebrities for saying various things about children with special needs, but even now I tend to leave that alone.  Why?  Because the attention is what these people want.  I might send them an email or - in the case of some of the malicious Facebook pages I've seen lately - report their page, but I'm not going to give them the attention they crave.  Universally, calling people out serves the person doing the calling out no good.

I try to bear in mind the impact my words have on others.  One reason I'll likely never be a viral blogger is that I tend to hesitate when jumping on the bandwagon of a story or idea or topic that is getting sensationalized.  This is for several reasons.  One, I don't like "profiting" (getting page views and readers) for the wrong reasons.  I also tend to stay away from writing spur of the moment emotionally charged posts because it is in those times that we must consider what we need to say carefully or else we might say something we might regret.  That's why you won't see me sharing many viral posts on my page, either.

Two, that's not what this blog is all about.  Some viral posts get so sensationalized that they get swept into a frenzy of emotion and comment and discord, and that really shouldn't be what this is all about.  If that's what I have to do to get people to read my work, I'll stick to the few but loyal readers I have, thank you.

Three, I think that sensationalized ideas aren't carefully considered by the information sources before everyone has at it.  I'll use Newtown as an example.  Think of the number of "This is what we know..." facts we heard from the media that were later recanted as the story evolved.  Rather than taking the time to fact-check, news outlets tend to publish first and fact-check later, because they want to be the first to come out with the information.  Basing my ideas on that type of journalism seems irresponsible.  I have an obligation to speak carefully and not to jump on any bandwagon.

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So...what is this all about, RM...you might be asking?  Why do I blog?

This blog exists for three reasons only, and these reasons have developed as I have grown into a mom, an autism mom, and a writer.  First, this blog was initially created so that I would have an outlet.  At the time (November 2010), I was a stay-at-home mom with little to do but sit at home or go to Gymboree on Tuesdays with a child who was very delayed and having severe developmental problems, even though I didn't want to see it at the time.  I began to write as a way of having an outlet to the world and releasing my emotions.  It was blogging therapy.

Second, after my son was diagnosed, my blog evolved to show the realities of parenting a child with special needs.  I was the only person I knew who had a child with autism - or any special needs, really - so my blog became a way to educate family and friends about the challenges Jack faced and the triumphs he encountered as well.  My hope is that through revealing the reality of autism - not what TV or the media or anyone with extremist views would have you believe - that I can make the world a better place for my child.  By showing everyone who he is, what his challenges are, what his strengths are, and what he is about in the best way that I can, I am helping someone understand who - in turn - might just treat the next autistic person they encounter a little better.

Third, this blog became a way to help others.  To create a place and a community where the average autism parent - the one who has good days, bad days, and who enjoys the sweet little rewards we all get along this journey - can come and feel a little less alone.  In part, it's to create a community for myself so that I can feel less alone, but I also feel fulfilled knowing that there are others who can come here and read and have that "Me too!" experience.

I think that - ultimately - that's why I won't allow myself to feel fear.  I won't hide my son and who he is, because I think he's a great person - rough days, meltdowns, and babbling smiles included.  While I can't speak directly to what it's like being autistic, I can take a guess and I can absolutely speak as an expert on what it's like to parent my child.

Am I my child?  No, but that doesn't make what I have to say less valuable.  It just makes it different. I have things to share about someone near and dear to me who is autistic, and I won't be afraid to do so.

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