How are you? I’m fine.
How are you? Thank G-d.
These exchanges are perfectly ordinary, socially acceptable ways to start a conversation. They’re so common that I rarely stop to think about what’s behind the convention of using “fine” as a default answer to questions about my well-being. But when I do, I wonder what people might say if they just spoke their minds freely and honestly, without filters.
With that in mind, I’m going to indulge myself and talk about what runs through my head when I find myself in the midst of a formulaic conversation.
If you’re the parent of an autistic child, you probably know the kind of conversation I mean. You find yourself talking to a person who doesn’t face the same challenges your family does, and that person tries to express compassion by saying something well-meaning but irritating. You don’t express that irritation. Instead, you smile and nod because you really don’t want to delve into the details – not right now, not here, not when you have another round of paperwork to fill out.
But what might you say, if you were to respond frankly and spontaneously when someone’s words have found their way under your skin?
Here are two examples of what I might say.
1.“I don’t know how you do it.”
My go-to answer for this is: “That’s OK, I don’t know how I do it either.”
I say this mostly because it amuses me (and often startles the person with whom I’m speaking) but it really is true. My life is very full! I have multiple autistic children, which means that I spend a lot of time thinking about, scheduling and attending meetings with teachers and therapists and other care providers –– and I do it on top of working more than 40 hours a week at an intellectually demanding job and maintaining relationships with my husband, my friends, and relatives, and also trying to manage a household and take care of myself. I don’t know how I do it all. Am I supposed to?
2. “You’re so brave!”
But I’m not. I’m really not. I’m not superhuman. I’m all too human, and I’m a person who wants ordinary things – calm, predictability, the sense that my quality of life is generally following an upward trajectory and that my efforts are paying off.
Maybe on some level, my neshamah chose this mission or proudly accepted G-d’s decree or something else that sounds noble and stirring. But if so, I can’t access that experience. My day-to-day existence is shaped by the fact that I live in olam hazeh and am bound by its limitations. On a practical level, that means I do the best job I know how to do with what’s in front of me.
And what’s in front of me? My children. My beautiful, hilarious and exuberant children. The children I davened for, longed for. The children who are nothing like I imagined they might be when I was pregnant. (They’re better!) The children who are perfect precisely as they are (even when they’re driving me to distraction and behaving in ways that lead me to apologize for yelling at them). The children who need me to protect them, help them and teach them. The children I hope to see using their middos to live their best lives.
It’s not brave for me to take care of these children. It’s not brave for me to figure out day by day (and sometimes millisecond by millisecond) what will keep them safe and whole. It’s my job, and it’s my honor, just as it would be if they were neurotypical. Is there really an alternative? Do I really have the choice to opt out (and if I did, could I live with myself)?
What does the word “brave” even mean here, anyway? Is it a shorthand way to say, “Your life is different from mine in ways that I’m not sure I understand,” or are you imagining me facing down some kind of enemy? I’m not. I’m simply accepting the children I have and the life I have and choosing not to compare them to the imagined ideal version of the children and the life I could have had. And it’s not just a matter of acceptance; it’s also an experience of awe at these human beings G-d has created as living, dynamic people who are more than I could ever have imagined them to be.
It’s not brave. It’s humbling. It’s complicated and joyful and exhausting.
What have you got to say to that?