It was a crazy day around here on Friday. Fridays are normally a bit rushed, as the day starts at 7:45 with our first round of therapy and spirals from there into a series of back-to-back appointments that always ends in us being late for speech (luckily, our speech therapist is an old family friend and very, very flexible), with the girls falling asleep in the car before I can get them home for lunch. On this particular day, we also had to be packed for the weekend early so we could drive 45 minutes north to drop the girls off at my parents’ house, shower & change, and then drive an hour and a half south to attend a wedding. Phew!
(A quick sidebar: it was the wedding of a friend of M’s who I had only met once, at my own wedding, and what a shame we hadn’t gotten together in the almost six years between– she’s lovely! I left that wedding with a whole crop of new awesome Facebook friends. Can’t do much better than that.)
During cocktail hour, we milled around eating bits of tasty hors d’oeuvres and making small talk with Friendly Strangers, as you do. Somewhere between bites of cheese wedges and meat-filled puff pastries, I had a new kind of moment that I hadn’t yet experienced in my parenting journey.
I was chit-chatting with a nice woman about the girls, and as often happens, we hit that snag in the conversation where I realize my answer to a question is going to leave another unspoken question lingering in the air. You know the one. If someone mentions “Oh, two and a half! Are they just talking up a storm now? Isn’t it so fun?”, I suddenly find I’ve gone down the wrong path in the conversation and hit one of those fake-exits to a coloring book maze, where suddenly you realize “crap, I used a crayon, I can’t erase this” and you try to reroute like you just took a brief detour on purpose. So it comes up, inevitably, that I mention that they have autism, and since I generally have about two sentences’ worth of time before we get there to plan our how to say it, I can soften it to lessen the shock value on the poor, Unsuspecting Friendly Stranger.
On this particular occasion, the very nice woman gave me The Look: sympathy mixed with pity, all very genuine, and just slightly edged with shock.
I wasn’t upset about it. It’s a look I expect to get anytime I mention my girls’ diagnoses, which probably seems like an odd thing to bring up with strangers but what can I do, like I said, it comes up. I mean, imagine if you asked someone you’d just met who has only said so far “I have a nine-year-old” about how their nine-year-old was doing and they replied brightly, “He’s doing great! He’s almost potty-trained!” See what I mean about that unspoken question hanging in the air between you? Really, your only other option is to lie, which goes down a whole other dead-end path of “should I be ashamed of my child’s needs and edit our life down to its most palatable bits so this stranger won’t feel awkward?” (No, you shouldn’t.)
It was fairly clear to me that this woman was having an honest and relatively unfiltered reaction to what is typically presented as sobering news. There was no malice in it, and it wasn’t over-the-top. I noticed it in large part because I’m always waiting for it. Being a person who strives to mitigate the social awkwardness that seems to follow me around like a balloon tied to my ankle, I quickly replied, brightly, “but they’re doing really great!” (Another dead-end: I shouldn’t be qualifying their neurodivergent brains with a counter statement to “undo” the autism part and make everyone feel better, but that’s Advanced Level Autism Parenting and I’m still a novice.)
My friend at Handpicked Miracle wrote about this issue tonight– how to talk about your child outside the comfort zone of “families like ours;” how to have a conversation about your life using what is seemingly a different language, where medical and developmental terminology have a far more nuanced meaning that the blunt instruments they turn into when we start using them to bludgeon Unsuspecting Friendly Strangers. Is it oversharing, simply because we know our lives carry more baggage than USFs are expecting? How can we use the same words to talk about such different things– to convey our pride rather than socially-accepted horror and pity in its place?
Another layer– how much responsibility do I have as a Autism Roundhouse-Kicking Warrior Mom or whatever we’re calling it now to advocate and be present and shout “this is us and we’re okay!” from the rooftops?
So here’s the thing: although this is my life and I’m a “special needs” mom now, I still tend to see myself as being on the other side of the fence. I see other parents with kids who have special needs out in the world and I deeeeeesperately want to talk to them, but I don’t know how to start that conversation. “Oh, I see your son has Down syndrome! My kids have autism. Can we talk about our feelings together? I think you will understand me, or something.” (Whoops, just tripped over the string on my Social Awkwardness Balloon.) I spend a lot of time thinking about how to converse without being presumptuous or using evaluative statements or talking about someone’s child like they are a tragedy and not the certain joy in that parent’s life, but while still respecting the difficulties that can come with some of these particular parenting experiences because, yanno, it can be really hard. And I wish I could just do this
but alas, that damn balloon is tied on pretty tightly.
(How cool is it that I just seriously found the perfect photo for that moment right there? I know, I do a lot of fourth-walling, but for real. That was kind of perfect because I’ve decided my Social Awkwardness Balloon is green. Anyways.)
I don’t want anyone to feel like they’re crossed a line and you just shouldn’t ask any questions about anyone’s child ever for any reason, and I also don’t want to unload “we were terrified and they got this diagnosis and at the time it was pretty awful and I cried a lot” on someone I literally just met. I know that it would take a lot of conversational finagling to traverse the incongruousness between my context and their context for us to land on a meeting of the minds in the middle (I’m picturing a very shaky rope bridge slung across a wide chasm here). But I do think it’s important for me to do a few things, since it’s part of how I roll:
1) Awareness. REAL awareness, not the “yup, it’s as bad as they say it is and just add us to the list of how many people you know who were on the unlucky side of the autism epidemic” kind, but the “yes, I may still have the multi-colored remnants of nail polish from three weeks ago, and I am clearly wearing clothing with food stains on it that I may have also slept in, but we’re here at the park, aren’t we, and we are all smiling and I am not dead yet, autism didn’t destroy my family and my kids are cute just like yours and it’s hard but we’re doing okay” kind (well, cuter, but I’m being diplomatic).
2) Normalize our experience. “Yeah, it was pretty hard in the beginning while we wrapped our heads around it, but they’re doing so well! They have little friends and playdates, they like to watch really irritating children’s TV shows, they throw their food on the floor, and they torment the dog. So toddlers, basically.” We’re our kind of normal!
3) Give people a chance to go “oh, shit, I shouldn’t have asked anything about her kids because oh wait, she doesn’t seem upset.” Because if they had that reaction in the first place– “oh no, that was the wrong thing to do, talking about autism must be like reliving the nightmare all over again”– then I am happy to be the guinea pig for someone to learn that “autism” is not like “Voldemort.”
This is part of the problem with awareness video clips and soundbites designed to highlight the tragedy and overlook the fact that when the thirty seconds is over, all of these people are still out there doing stuff like eating macaroni and cheese and washing bedsheets and buying new shoes because the old ones are too small. You know, regular life stuff. Sometimes it’s really complicated and sometimes it’s the same as everyone else. Or who knows, whatever you all are doing. I don’t know.What are you doing, Unsuspecting Friendly Stranger? Tell me about you.
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I’m not a big fan of one-size-fits-all expectations and coping strategies, so know that I’m not sitting here advocating for all people to take my approach here. I promise, it is totally okay with me if you have a “complex needs” kid and you’d prefer to just nod and sip your open-bar Seabreeze and not have to talk about feeding tubes or percentiles or orthotics or communication devices. That’s okay, too! I’m just talking about my thing but you go on and do your thing.