By Attorney Mary McKee
When I gave a talk at a CEVEC parents’ group meeting recently, I opened with the first paragraph of a book I’d been reading:
There is no such thing as reproduction. When two people decide to have a baby, they engage in an act of production, and the widespread use of the word reproduction for this activity, with its implication that two people are but braiding themselves together, is at best a euphemism to comfort prospective parents before they get in over their heads. In the subconscious fantasies that make conception look so alluring, it is often ourselves that we would like to see live forever, not someone with a personality of his own. Having anticipated the onward march of our selfish genes, many of us are unprepared for children who present unfamiliar needs. Parenthood abruptly catapults us into a permanent relationship with a stranger, and the more alien the stranger, the stronger the whiff of negativity. We depend on the guarantee in our children’s faces that we will not die. Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do. Loving our own children is an exercise for the imagination.
From Far from the Tree: Parents, Children, and the Search for Identity by Andrew Solomon Chapter 1, “Son.”
Many in the audience were nodding knowingly. Without the need for a spoiler-alert, I hope, I would just mention Mr. Solomon’s other chapters: Deaf, Dwarfs, Down Syndrome, Autism, Schizophrenia, Disability, Prodigies, Rape, Crime, Transgender, and Father. From the photo of Gus at his Murray Ridge Prom, I’m sure you know which other chapter I read first.
At 700 pages plus a 75-page Bibliography and 120 pages of Notes, there’s a lot to like, and I’m still, shall we say, “involved” with the book. (And to think people say I —like Solomon, also an early ‘80s magna cum laude Yale English major, if you can believe it—take a while to say what I need to say.) To learn more: www.farfromthetree.com. My intention is someday to donate my copy to our waiting room. Not that we’d subject our clients to a 700-page wait. But with a vignette on virtually every page, it’s bound to inspire readers who may well recognize themselves there to add it to their home library.
At the time I quoted the excerpt to the parent-group, I was focused on the part about being “unprepared for children who present unfamiliar needs.” I’d been startled when I began to dread being with my own son and had to seek professional help at KidsLink during that stretch of my “permanent relationship with a stranger.” “We must love them for themselves, not for the best of ourselves in them, and that is a great deal harder to do.” Yup.
But now, as I expand my law practice back into special needs planning again, including advice about why, when, and how to apply for benefits, I’m now drawn more to the part about the “fantasy of immortality” and how “We depend on the guarantee in our children’s faces that we will not die.”
I read somewhere that less than half of U.S. adults have wills, let alone living wills. So that’s about every other person in line at the grocery store, about every other driver on the road. Hm. I wonder if there are any statistics on whether parents of (minor or adult) children with disabilities are any more likely to confront their own mortality, or any earlier, than parents whose acorns have fallen a little closer to the tree. Ha – We depend on the guarantee in our children’s faces that we cannot die. Right? I confessed to a county Service & Support Administrator the other day that I can’t bear the thought of someone else clipping Gus’s nails. The calm, rational side of me knows that someday that will be somebody else’s task—unless, deep breath, we were to lose him first instead of he, us. (Fleetingly reminds me of how we used to cut my baby daughter’s bangs, before she could understand “hold still,” placing the scotch tape on her sweaty forehead, snipping straight across as she slept so soundly.) I keep imagining Gus looking up and suddenly seeing someone else with the clippers and freaking out, and then no caregiver or housemate wanting to come near him because his nails get so long and him not knowing why everybody got so unfriendly. Irrational, I know. “Loving our own children is an exercise for the imagination.” Parents of non-disabled children have many reasons to stick around. But fingernail-clipping, that’s not one of them.
Someone in a LinkedIn disability professionals group I joined posted a link to this video: Embrace the Shake. I have been spared (or deprived, depending on the day) the ability to talk with Gus about his limitations. I know he can get frustrated in the moment, and I know he has a conscience and can learn, but I don’t think he reflects on his situation or agonizes over it. So I guess in some sense I feel like his are “our” limitations, something the rest of us have to find a way to work through, or work within. For my own part, his impairments define, confine, and yes, refine pretty much every part of my life.
One friend, when I forwarded her the Embrace the Shake link, asked whether I’d ever come across The Bound Man, a story by Ilse Aichinger. All I can say is brace yourself.
It goes beyond just Necessity being the Mother of Invention. In one of those The Last Word pages at the end of The Week magazine I’m so fond of, this one called “What is a good life?” by Emily Esfahani Smith, I read about Viktor Frankl, a Holocaust survivor who in his 1946 Man’s Search for Meaning wrote: “Everything can be taken from a man but one thing, the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
Look, I know that in the larger scheme of things, on the spectrum of physical, developmental, and mental disorders, Gus is not the most challenging case, demanding the most attention and energy. His transition from the public middle school to Murray Ridge drove that home again. I might be hung up on who’s going to clip my kid’s nails one day, but other parents have to think about who’s going to make sure their child keeps breathing. Or eating. Who all’s going to be there to make sure their baby, now all grown up, doesn’t pull all their hair out or sit in their room all day or run away or get pregnant or accidentally hurt somebody during a seizure or a rage.
Let’s level with ourselves. Yes, there are many things we cannot do with our acorns, our strangers. For me it’s ride a bike alongside him (so far) (he’s 17 today) (but he started eating hard-scrambled eggs and raw cauliflower and al dente rigatoni this year out of the blue, so you never know!), tell him a funny story, or hear one of his. For you or someone you know, it might be get a hug, take a walk, lock eyes, unlock the door, share a meal of the same food, take a trip, sleep through a whole night. Simple joys that other parents might unwittingly take for granted or even gripe about. What parents like us can do, one constructive, smart thing we can do, right now, is to start getting things in order for when we’re not around. Because, not to be trite, but whether it comes at age 38 or 83, that shift into a different world, whether body or mind or both, it’s always sooner than we think. I’m not trying to guilt anyone into taking the next step toward planning. With all my resources, inner and otherwise, I am certainly in no position to tell any other family to “just do it.” And it’s not simple and it’s not fun, like a bike ride or wink.
My point is only this: Why not get this stuff squared away while there’s a lull. Before the holidays, before you open your next mammogram letter, before your spouse’s career or commute or colonoscopy turns into something other than hum-drum routine, before your other kid gets married (or divorced), before your mom falls down those last three steps, before your dog gets any older. That’s what finally prompted us (years after Gus was born, even being in the business) to move forward with the paperwork. For me, it was like getting a flu shot. Probably won’t make a lick of difference, I thought to myself, but if something happened and I hadn’t even bothered, wouldn’t that be worse than facing up to all this stuff now. So at least the basics are behind us and we, like everyone else, just have to freshen up our plan every so often.
Ours is a world where “extreme” tends to be a good thing, desirable, something sought by those who have developed a tolerance for run-of-the-mill speed or soap or chicken-wing sauce. Our children have fallen—or, in the case of birth injuries or childhood mishaps, landed—farthest from the tree. “Extreme” (adj.) from Latin extremus “outermost, utmost, farthest, last.” In other words, not normal, natural, typical, but, in one direction or another, abnormal or unnatural or atypical.
When we re-frame the issues, “embrace the shake,” and strive to operate within the parameters of our lives, then this extreme, far-from-the-tree parenthood we’re experiencing (remember the squirrel and acorn from the short at the beginning of Ice Age? Tree? What tree?) could potentially be perceived as full and rich as it is. They say “bloom where you’re planted” and “no snowflake falls in the wrong place.” Maybe the same is true of acorns. (Or apples, if you’ve heard it that way.) Maybe we are not outliers, amateurs asked to chug some ultra-energy drink and participate in this latest extreme sport our parents never heard of called raising a special-needs child, not just a difficult child, but a disabled child. At the other end, maybe ours is not just some watered-down version of the real thing, of “normal” parenthood, if that even exists. Maybe it’s fun and worthwhile. As is. Like, I don’t know, bumper-bowling, maybe. Or chair yoga. Or box-cake-mix. Or a player-piano (even the iPad version). Or word search. Which is all this little article is, when it comes right down to it. At least compared to Solomon’s masterpiece. And I can live with that. Thanks, in part, to what Gus has taught me, to where Gus has brought me, that’s accept-able.