I Am That Person. I Am That Mom

Social media. Ah, social media.

I made my first post about my uneasy relationship with social media five years ago, explaining why I blog anonymously. Two years ago, I posted again, bemoaning the lack of civility on-line, even among acquaintances.

I love Facebook, for the connections to old friends and my autism recovery groups. I also recognize the wisdom of keeping my mouth shut on controversial topics: Social media rarely allow for productive and thought-provoking exchange; users prefer to post dumbed-down memes and wait for comments that support their opinion.

What I need to get past, these days, is feeling personally attacked by others’ posts. Take, for example, this sketch that appeared recently on my Facebook wall:

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The implication? That a mother whose child eats only organic, homemade food doesn’t “live[] in the real world.” But I live in the real world. And my child eats only organic, homemade food, except for a few commercial, raw snacks and occasional meals at pre-approved restaurants.

Or how about this post?:

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Indeed! It’s me! I eat seedless (organic!) grapes and complain that GMOs are unnatural! I know the difference between selective breeding and genetic modification. Selective breeding is vertical genetic transmutation within a given species. Genetic modification is transmutation of genes horizontally, across species. Totally different.

I don’t respond. Why waste thoughtfulness?

I’m sure you can imagine how I felt when a friend posted a link to an article purportedly tying a measles outbreak to “anti-vaxx” parents and asked, “Who are these medieval people???”

Me again! Not only as the parent of an immune-compromised child, but also as an attorney, I have concerns about the current vaccination regime. We’ve exempted these potent pharmaceuticals from the usual liability schemaand the safety assessment protocol lends itself to manipulation as vaccine after vaccine after vaccine is pushed onto the recommended schedule. At the same time, legislatures are seeking to move these injections from “recommended” to mandatory, i.e., to restrict even exemptions that are based on valid health concerns. The whole pharma-driven plan invites rising vaccine injury rates, and I hope to witness more Constitutionally based challenges.

 

The list of Facebook zingers is long. I resist the urge to respond, “I’m glad you asked. I am that person.” I resist because I will end up only frustrated, and because fighting those virtual battles can sap energy from the real task at hand, Martin’s recovery.

But as usual, I am conflicted. Many of these types of Facebook “status updates” come from acquaintances who, I think, respect me and/or my professional competence. They come from law school classmates and from co-workers, from the siblings of childhood friends and from distant relatives. If I were to argue almost any valid opinion face-to-face, they would probably take note. I might even sway them.

If I am a person who may have influence over pro-vaccine, organic-bashing lovers of genetic modification, maybe I have a responsibility to speak. Or maybe—if I speak against pro-vaccine, organic-bashing lovers of genetic modification, I will lose whatever influence I have to command.

A conundrum.

A conundrum not limited to Facebook. An older relative, for no apparent reason other than knocking a chip from my shoulder, told me he was getting a Zostavax shot against shingles. I suggested that he might want to weigh the side effects, and that Zostavax is counter-indicated for people who’ve been treated for cancer (as he has). He blew off my concerns (which was likely his intent from the moment he brought up vaccination out of the blue). He said: “I believe in science.”

Science? What did you read before reaching this decision? I can show you the studies I’ve reviewed. I understand your concerns about shingles. On the other hand . . . wait. You haven’t done any research whatsoever? You saw a commercial that said a shot would protect you, so you’re going for it, no more information necessary? Good call.

Waste of breath.

When I started this blog years ago, Martin’s biomed doctor said, approvingly: “We have parents telling everyone they know that recovery is possible, and no one listens. You’re an Ivy-League-educated lawyer who can write, and a stickler for facts. Maybe they’ll listen to you.”

Maybe they won’t.

In my blog, I speak freely, When it comes to social medial, I’m better off trying to find points of agreement. Let’s go back to “Deborah,” who “loses her s**t daily & knows every honest mother does too”:

At least I can admit that I’m an “honest mother.”

Civility

I know that I should stay off social media, other than maybe the autism-recovery groups I enjoy.

I definitely know that I should refrain from taking the bait when people post uninformed opinions on topics about which I have, well, more informed opinions.

If you read this blog, you probably have thoughts about vaccines. I do. I’ve posted about the link that I think exists between vaccines and the symptoms of autoimmune disorders, symptoms like “autism.” It’s such a controversial topic. I try to read as much about vaccines, on both sides of the issue, as my schedule allows.

Which makes me ripe for a bad Facebook experience. I made the mistake of responding to a post by a guy I knew well in college and now know only through Facebook.

This Facebooker, the guy I know, posted an opinion piece deriding “anti-vaxx” celebrities. (“Anti-vaxx” was used in the posted piece. It’s not my term. I don’t think raising efficacy or complications concerns, or questioning ingredients, is necessarily “anti-” vaccinations). Beneath the link to the opinion piece, the Facebooker said something like, “It is a sad commentary on our society when people are willing to accept celebrity ‘opinion’ over scientific fact.” He then went on to compare “anti-vaxxers” to people who deny evolution or global climate change.

Within the comment thread under his post, the Facebooker asserted, without citation, that “any link between vaccines and autism has been scientifically disproven.”

Best course for me to take in such a situation: turn off Facebook and walk away.

Course I did take, this one time: I commented. I wrote:

“Can you point me to the study that you are referencing? I’m not advocating one way or the other. I am aware of studies suggesting the absence of a link, and of studies noting that vaccinations can cause neuro-disruptions. But I’m not aware of any study that compares autism rates in vaccinated versus unvaccinated populations.”

Then, lest anyone think I have a connection to autism (we’re not public about Martin’s diagnosis), I added:

“I am concerned about this topic because at age 12 I was very sick with measles, despite having been twice vaccinated against it.”

What did I want to achieve by commenting? I don’t know. I was frustrated. The Facebooker’s comment made no sense, empirically or otherwise. We cannot “scientifically disprove” a link between any two occurrences; the most we can do is, while attempting to control for other variables, demonstrate that the occurrences arise no more often in conjunction than they do independently. In the case of autism and vaccines, I know, that rigorous work has not been done. This Facebooker was carelessly spouting an untruth.

In seconds, without thought or ceremony, he responded: “There. Is. No. Fucking. LINK. NONE. STOP.”

And I, shocked, wrote: “Um, okay. That sounds scientific.”

Most of this is likely not verbatim. I recall, exactly, his comment, “There. Is. No. Fucking. LINK. NONE. STOP”—periods, explicative, and all. As for the rest, I am recreating the conversation. Immediately after I wrote, “Um, okay. That sounds scientific,” the Facebooker deleted the link and the comment thread, and replaced it with this status update:

“You’re not going to spoil my happy today. Period.”

Under that “spoil my happy” status came this comment thread:

Random commentator: “Oh, see now… someone’s going to try!”

Facebooker I know: “Already has. Why do you think I posted it? What it comes down to is this. To the world: As much as you are obviously in love with your own opinions, I DON’T CARE!!!!!! You may not care about my opinions either. That’s fine. No skin off my nose. BUT I DON’T CARE!!!!!!!!!”

Random commentator: “Ah, see, I almost had a sarcastic comment for your last post.”

Facebooker I know: “I swear to God, you could post that 1+1=2 and there’s going to be someone who argues with you. Not having it.”

Wow, right? This Facebooker, as I said, is a guy I knew in college. I’ve seen him once since college, when he was in New York a year or two ago, and we had a nice lunch to catch up. No prior animosity. Nothing. That explosive reaction resulted, as far as I know, 100% from my question about “scientific disproof” of a connection between vaccines and autism.

I commented no more. Instead, I took my boldest Facebook action ever. I stopped “following” the guy. I didn’t go so far as to unfriend him. Unfriending just isn’t in my nature. But now that I’ve stopped following him, his posts no longer appear in my news feed.

It’s justified. Around when Demi Moore was separating from Ashton Kutcher, this Facebooker posted a picture purporting to show cellulite on Demi’s legs and chastising her for not spending enough time on a treadmill. As if women don’t have enough trouble with body image! Demi Moore weighs, like, 70 pounds. Then, during the 2012 NFL referee lockout, when the league used less-experienced substitutes, this Facebooker complained about a game by posting something like, “These replacement refs are really ‘special,’ and I don’t mean that in a good way.” You see the problem there: He’s implying that the referees have special needs, which is “bad” and appropriate for ridicule. The way I see it, the vaccine incident was strike three, and this Facebooker is out. Or at least un-followed.

There’s a real shame in this story. In the original “anti-vaxxers” link and comments—the thread that the Facebooker deleted because he was “not having” any “argument”—there was a comment from a third-party who self-identified as a person with autism. She wrote something like, “Even if there were a link between vaccines and autism, people who abstain are suggesting that they would rather lose a child to preventable disease than have a child like me.” I would have appreciated the opportunity to follow up and engage that person further.

No such luck. Some topics, it seems, are just no longer available for discussion.

Because They Know

If you’ve been reading this blog for a while, you know about my love-hate relationship with social media. Something about operating on-line makes people thoughtless. Combine that with my hyper-sensitivity on autism and child issues—the result is potential meltdown every time I log on.

One particularly problematic area for me is constant Facebook updates about amazing children, written in some superficially deprecating fashion. “No other kid in Caleb’s figure-skating lessons can even axel. Can’t believe I can’t afford anything better for a kid who already lands a lutz!” Or: “I really love Woody’s new teacher. Look at this certificate she made him for getting the highest reading scores in the class.” Or: “Clementine is district chess champion. I feel a little less like I’m depriving her by not being a soccer mom.”

I get bitter.

Strangely, it is only the amazing-kid updates of distant friends that bother me. I like reading when my close friends—the kind of friends I visit, and telephone—post about their children.

I’ve come up with two reasons for the difference.

First: My close friends don’t do the superficially self-deprecating thing. They just brag. I’m not sure why that’s less offensive, but it is.

Second: They know about Martin.

When it comes to social media, I’m constrained, because we’ve chosen to keep Martin’s autism confidential. Adrian and I are careful not to post anything that makes our son appear atypically developing. We share the one picture in ten in which Martin actually looks at the camera. We write the cute things he says only when they sound like what any four-year-old might say, or else we edit to keep the gist while fixing the words. Of Martin’s true successes, I cannot boast on-line. “Martin chased a boy at the playground for, like, at least five seconds before he lost interest!” “Martin had a four-exchange conversation with his babysitter!” “In the midst of bolting down the sidewalk this afternoon, Martin turned around to see if I was following him!”

My close friends know about these successes, even if I can’t share them publicly, because they know about Martin. Last Memorial Day, as we do annually, Adrian and Martin and I got together with some of my closest girlfriends from high school. This year six families attended the gathering. The other children, all older than Martin and all typically developing, played with him as if he were their own little brother; they were patient, occasionally teasing, responsibly keeping him from trouble. From the parents I heard nothing but swooning. Martin was talking so much more than the previous year. Martin’s eye contact had improved. Martin had better command of his movement.

No strange looks to endure. Nothing to cover. Only compliments.

I felt like a million bucks.

When Martin and I visit his doctor in Chicago, we follow a two-day pattern. On day one, we fly from LaGuardia to O’Hare, rent a car, see the doctor, buy groceries at a Whole Foods Market, and check into a hotel “suite” with kitchenette, where I prepare Martin’s dinner. On day two, Martin and I eat breakfast at the hotel, return to the doctor’s office if any follow-up is necessary, then spend the afternoon at a friend’s home in Elmhurst, not far from the airport, and finally catch an evening flight back to LaGuardia. The Elmhurst friend is a high-school classmate, with a toddler of her own, and a most considerate hostess who prepares some fantastic vegan lunch for me while I co-opt half her kitchen to cook for Martin.

Several months ago, I awoke sick on day two of a Chicago trip. My head was pounding, and I was nauseated. A hot shower didn’t help. Nor coffee. Nor dry toast that I ate with my head resting in my palm. And poor Martin—I had no one to help out, and with no energy or patience, I was content just to get him and our things moved somehow to the rental car.

Almost the moment that I settled onto my friend’s sofa in Elmhurst, my situation began to change. My shoulders relaxed. The headache evaporated. It had been tension, of course. I’d gone to bed with a slight cramp in my neck, and made myself sick by worrying all night about what I would do if I got sick and had no one to help with Martin. Once we arrived in Elmhurst, I knew that if necessary I could say, “I need to crash in your bed for the rest of the day. Here are Martin’s pills and food. Good luck.” And my friend would have replied, “See you tonight. Yell if you need anything.” There was no longer any need to worry, and I felt better.

That’s the way it works, with friends who know about Martin’s autism. They’ve got my back. They procure food for Martin, cook for him, ask about his needs, encourage his friendships, celebrate his successes. And so I do the same for them. It’s like we’re one big family, sharing kids. I want to hear about their amazing kids, because those kids are mine, too.

I can’t take that feeling to social networking in general.

I suppose this blog is my brag book, instead. My anonymous brag book.

Sorry about that, readers.

Not the best-quality picture! Martin was so determined to flush this airport toilet with his foot that he climbed onto the fixture to manage it. I hardly had time to whip out my smart phone and capture the moment.

Not the best-quality picture! Martin was so determined to flush this airport toilet with his foot that he climbed onto the fixture to manage it. I hardly had time to whip out my smart phone and capture the moment.