Parenting is a relentless, daunting, demanding 24-7 job with zero sick days (and loads of intangible, bizarre, awe-inducing benefits). I have yet to meet a single parent who hasn’t been gripped by some phase of the job that starts to seem unbearable: a 1-year-old wakes up every two hours, or a toddler refuses to eat any sustaining food, or a diaper-wearing 3-year-old throws tantrums at any mention of the word ‘potty,’ or a school-age kid takes to hitting her classmates. There’s a balm most parents use when they find themselves in these difficult patches. When a child’s behaviors push parents to the very edges, to those desert places where the reservoirs of patience and energy are bone dry, the parents I know vent, then sigh, and almost invariably turn to the foolproof antidote for parenting woes. They say, Well, it won’t always be like this. I mean, he won’t be wearing diapers forever. Or they say, Eventually, she’ll sleep through the night… not only in her own bed, but in her own apartment.
In other words, This too shall pass. I nod, and I get it, and I feel relief for them.
But parents of kids with intellectual disabilities can’t feel relief with them. That is, this balm doesn’t work on us. I don’t mean to say this with any sort of tragedy, as in, Look how sad I am, with my possibility of diaper-changing forever. (Four years ago, when Fiona was a mysterious newborn with onyx eyes, I was told about a woman who changed her daughters diapers for decades, and I winced and thought, How sad. Now I want to slap my former self kindly like a good Zen master, and say, “Oh, shush. A perfectly good life can be lived for decades changing diapers, or in diapers.”) So again, I don’t mean to make this sound tragic. I just mean to be true. We parents of kids with intellectual disabilities have little access to this balm, the one that soothes by offering escape into the future. In the future, he/she will be doing this, or that, a typical mom might say. Because that or that is what all people do.
In our minds, we revise. Not all people, we think. To very good friends, we say this aloud. And our very good friends nod. They remember we lack the relief of an imaginative time machine. For us, the time machine takes us forward to a Dr. Seussian land of strange trees, ones that bear question marks instead of fruit.
Case in point: At age two, Fiona started behaving differently—she was more defiant, more ornery, less agreeable. She started whining a lot. She started slapping me in the face and then she smiled when I told her no. She pulled my hair if I didn’t reply immediately to her whininess. She had been so easy-going, so docile, so passive as an infant that the shift shocked me. Could this be her version of the Terrible Twos?, I thought. When I googled “Terrible Twos,” I found a list of qualities my girls’ disabilities made impossible. She was nonverbal, so she couldn’t repeatedly say “no.” She couldn’t crawl or walk, so she couldn’t make her way out of her crib in defiance of bedtime. She had low tone, so she couldn’t kick and scream during a tantrum, which she also never had. But I was still convinced that her behavior was her own developmental expression of a typical phase. So I wrote the Wolf-Hirschhorn community, hoping other moms and dads would confirm that this was “just a phase.” That this wasn’t my new-forever-normal.
Several people replied with gentle versions of “Get used to it.” I was told that the “Terrible Twos” might last eight years. I was told they might last forever. “It’s like living with a two-year-old always,” one father of an adult daughter with Wolf-Hirschhorn syndrome told me. He said this cheerily. He clearly adored his daughter.
The last four words of this article on “The Terrible Twos” read: It won’t last forever. But many parents in my community were telling me that, yes, it very well might.
It is an odd thing, doing this most typical human job—raising other humans—in a way that is so atypical.
For Fiona, the Terrible Twos didn’t last forever. She stopped smacking me in the face. She stopped pulling my hair—although I suspect some of this is due to her ability to communicate (via her talker). She no longer needs the language of pain.
But again and again, when I’m faced with tough phases, I have no mental escape hatch. I can’t plummet myself forward a decade and envisage relief. I have to bunker down. I have to breathe and just be here now, as Ram Dass writes in his psychedelic 60s classic, which I read unironically at age twenty-one. “The opposite of craving is saying, baby, this is the way it is, yeah, OK, here and now, this is it. I ACCEPT THE HERE & NOW FULLY.” I have been given this odd, unwanted, but strangely powerful practice of just sitting with whatever it is that I don’t like. There’s surprising, weird liberation in that. It is the anti-escape hatch.
Today, I bought a sippy cup. I told the cashier how difficult it was to find this particular brand of sippy cup, that the manufacturer discontinued it, and that it’s great for kids with oral challenges. She said her son still uses his sippy cup. I said it was only recently that my two-year-old only graduated to a straw. She said, with fatigue, “Well, my son’s three and a half.”
I said, because I’d heard parents say it so many times before, and because it soothes them so quickly, and because I wanted to soothe: “Well, don’t worry. Your son won’t be using a sippy cup forever.”
I saw it in her face: not relief, but a familiar unknowing, and my mind’s eye replaced what I’d said with its opposite: the vision of a boy drinking from a sippy cup way into adulthood. Was I just projecting, or had she too made uncertainty a kind of practice?
She shrugged, and said, “He’s on the spectrum.”
Maybe there are far more of us than I realize, parents who have to live with a million question marks, parents who learn to dance with them.