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.
Keep writing! I have a autistic son too! Alesia
Thank you, Alesia! God bless you and your son—the sky’s the limit.
Wait. Wait. Feeling bitter is not supposed to be normal?!? Lol. My husband and I joke every once in a while on how a fellow friend parent in conversation said to his wife…”you know (kids name here) is still having a hard time with the 2 “g” sounds…” I almost fell off my chair and gagged on my ritz cracker…g sounds!!! I wanted to scream “Heck! He speaks! Eliminate g from the alphabet for all I care!” But my husband and I just smiled as if to read each others minds and moved on. I think the bitterness is quite normal….by golly I would say expected! Never mind the amount of broth and supplements I manage daily but the special foods and baking ….and the sacrifices my little guy has to make. Go ‘head sister..allow yourself to feel a little bitter. We wake up every day, step up to the plate and swing looking for our home run…With no fans, no training and no coach. We swing until our backs are sore and our knuckles ache. But you know what ? We wake up to do it all over again waiting until we smack it out of the park. Own every emotion…including bitter. It’s how to keep those feelings in check…….oh and red wine too. ;-). Keep on swinging sister. You are not alone. Oh and btw, your brag book rocks!
Tanya, this is hands-down my favorite comment to the blog, ever. It’s wonderful, isn’t it, how other parents who do biomedical intervention “get it”? We’re pioneers, fighting the mainstream medical establishment, media reporting (on vaccinations, for example), well-meaning friends and teachers and counselors, even sometimes our own families, and we work months and months and months for every single inch of progress. And yet we keep on coming back for more, because we can see that, whatever the expense to our own dreams and even health, we’re winning. We are. I know you know what I mean when I say that every time some parent tells me about his/her kid’s constant strep throat or mild speech affliction or peanut allergy, the only response I want to give is, “Are you kidding? I have a son with autism. Get a real problem.” Keep fighting the good fight. You’re in my thoughts.
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