The Peril of What If

There aren’t a lot of universal experiences for the parents of special needs kids. The range of events that our families go through is breathtaking. And yet, there are a few things that I think almost all of us experience at some point or another. Two games, perhaps, if you want to look at it like that.

There’s the Pain Olympics, in which parents compete for who’s got it worse. It involves comparing our kids to neurotypical siblings and classmates, which does no one any good, and worse, it ends up contrasting our children with others with disabilities. “You should feel lucky, at least your kid can…” It’s not just a losing proposition in every way possible. It ignores the particular struggles and circumstances we all face. The Pain Olympics are the absolute worst. If you do that, just stop. Okay? Alrighty.

The other game is trickier. It’s the one we play in our heads, which brings torment but is also probably inevitable. Sometimes it’s the game we play out loud, in our moments of weakness. It’s the game where we imagine how things might have been, when we imagine a world where our kids aren’t broken, when their struggles are reasonable, when their differences don’t impair them. It’s the game where we imagine a world more fair.

It’s the What If Game.

The What If Game is more complicated than the Pain Olympics, because while the Pain Olympics are pointless in every way, there can be unexpected relevance in the What If Game. Science progresses, medical breakthroughs happen, and they are almost always driven by what can be done, leaving the ethical questions for society to work out. We don’t usually sort them out very cleanly.

The topic came up recently with the disclosure that researchers in Massachusetts have managed to disable the extra chromosome responsible for Down syndrome in cells taken from subjects with Down Syndrome. The researchers hope to eventually carry out human trials via gene therapy.

The news caused complicated reactions from the Down Syndrome community, which is perfectly understandable. I think that reaction can vary depending on the nature of the specific disability. For parents whose kids have disabilities that threaten their lives or manifest in very specific and focused ways, news of medical interventions and miracle cures can be welcomed with hope and relief. For those whose children have conditions like Down syndrome or autism, disabilities that affect them at a level perhaps more fundamental to their personalities and maybe even their very essence as human beings, the idea of changing their kids feels dangerous, and even devaluing. Take away that piece of my kid and you might just take away the part of him that makes him who he is.

And as those kids get older, they may very well come to resent the idea that they need to be “fixed” at all.

I’m reminded of the 2001 documentary Sound and Fury, which followed the story of two deaf cousins, one with hearing parents and the other with parents who are deaf. It follows the decision making process of the deaf parents as they weighed the benefits and pitfalls of giving their daughter cochlear implants and thus stimulating her hearing, a procedure that her cousin’s parents made for him when he was a baby. It can seem like an obvious choice, but issues of personal identity and the preservation of the deaf community became central to their choice.

Sometimes the What If Game cuts both ways. What if our children really could be cured, or helped to the point that their disability is all but defeated? What does that do to their sense of identity? What if it changes the essence of who they really are, in a fundamental way? What would our relationship as parents represent then? What is my responsibility? Is it to protect that basic sense of self, or to fight to open doors that may lead them to places we never dreamed of? Are those places necessarily GOOD places?

The What If Game becomes a kind of test for us. It makes us evaluate what we are doing for our kids, and whether or not we’re ultimately making good choices for them. But the What If Game is dangerous, too. It can lead us to despair when despair isn’t always or even usually appropriate. It’s tricky. It is very, very tricky.

The trend these days seems to heavily favor acceptance, and an appreciation for diversity, and I can certainly understand that. For myself, the What If Game still leads me to the same place it did ten years ago. My feelings on this question are probably unpopular, but they are mine and they motivate me in the same way they always have. As Schuyler’s parents, the What If Game’s central question is the same that it has always been for us.

If you could take away Schuyler’s disability, if you could give her an unimpaired brain and a clear voice and a level of cognition appropriate to her age, would you do that?

My answer is the same as it was ten years ago when I knelt in front of an old church in New Haven, Connecticut and offered the last prayer I ever prayed, to a God that I ultimately broke up with. It was the unanswered prayer to please take this thing from Schuyler and give it to me instead. My answer is the same now as it has always been, the same answer that accompanies the regular dreams I still have, the ones where Schuyler speaks to me in a voice that is strong and clear and full, not just with the wonder that she feels towards this world, but also an understanding that she does not now fully possess.

My answer would be that not only would I take away her monster from her forever, but even now, against everything I know to be medically true, I still haven’t given up hope that one day, we might do just that.

Is it an evil dream? When she’s older and she reads what I’ve written all these years, will she also feel devalued, as if she wasn’t good enough for me as she was? That’s a very real possibility, and it’s not one that I take lightly.

But every so often, just enough to be a regular thing, Schuyler will sigh heavily and tell us, “I want to talk like everyone else.” She gets that her speech is impaired, and I imagine that she understands that her classmates grasp things that she does not. She’s heard the term “retarded” many times before, both from nasty classmates and cold professionals, and she understands what it means when it’s applied to her. She understands, and she does not celebrate her neurodiversity. Not yet, anyway.

So I imagine that no matter what complicated feelings she might have when she reads how hard we fought to help her, at the very least, she will understand that we never gave up. And I don’t think that’s a small thing.