Daddyo

Father's Day feels different when your child is different

Robert Hudson and daughter Schuyler; photo by Adrienne Welker

For many people, Mother’s Day is… I’m not sure I’d say easy. Perhaps straightforward. There’s a narrative for mothers in our society. For better or (very often) for worse, we’ve determined what being a Good Mother looks like, and how we want to celebrate it. I won’t pretend that it’s fair or that it sets up a reasonable expectation for moms who are doing the best they can. I suppose Mother’s Day is fraught with its own dangers, but it’s not usually a hidden minefield. Love it or loathe it, you know what’s coming.

Father’s Day is more oblique, largely because our perception of what it means to be a father has changed over the decades. For the better part of a century, fatherhood was often seen through the lens of absence. Dad was off fighting the Germans and then later working in an office with Don Draper, right? That was the narrative, anyway. Later, that narrative grew to include the deadbeat dad and the doofus dad. It felt like the only good fathers were on TV, like Dr. Cliff Huxtable. (In retrospect, perhaps not the most enduring example.)

In children’s literature, Dad was mostly absent; Dr. Seuss wrote of a world with almost no fathers aside from Pop, and he’s just there to be hopped on. Honestly, the best classic dad figures in young people’s literature are probably Atticus Finch and the Man in the Yellow Hat, and he kidnapped his ward and let him smoke. Even I never did that.

In the past twenty or thirty years, that theme of absence has been challenged, and fathers are left with a new narrative, which is to say a very specific non-narrative. Contemporary fatherhood has become a blank check. Make it up for yourselves, dads. There are fewer suffocating societal expectations, which of course means there are fewer instructions. The good news, no rules, is also the bad news.

That freedom to chart our own course probably feels a little different for dads like me, fathers of kids with disabilities. It has been almost twenty years since I received the diagnosis for my daughter Schuyler. Polymicrogyria describes a rare brain malformation that can cause a wide range of conditions, including seizures (sometimes fatal), speech difficulties and intellectual disability. For Schuyler, those manifestations landed relatively gently; her seizures were never life-threatening and her intellectual disability didn’t stop her from graduating from high school or enjoying a rich, meaningful life.

Schuyler has met with success, but she has challenges remaining. She is unlikely to ever live alone or drive a car, for example. Although using an electronic speech device since childhood has trained her brain and improved her verbal speech, it can still be very hard to understand her, especially for the uninitiated. She has memory issues and difficulty with numbers, and her brain is prone to flights of near paranoia when confronted with situations that are difficult for her to understand.

For Schuyler to live a meaningful and rewarding life, she needs support and guidance. She’s an amazing person; anyone who feels pity for her, or for her family, is missing the point of the beautiful, positive and tenacious human being she has always been. Schuyler is a bit like some majestic wild creature who, thanks to a genetic misadventure that occurred before she was even born, cannot be released into her natural wild habitat, not without supports.

Fatherhood has a few persistent narratives in our culture. One of them is the repairman. Like most such narratives, I think the repairman is a flawed idea, but with a kernel of truth. I’m not usually one for gender-specific narratives like this, but I’m hard-pressed to dismiss this one entirely. I’ve seen it time and time again, and even as I want to reject it in my own life, I feel it all the same. Mothers of kids with profound differences are often inclined to negotiate the difficulties, to find ways to mitigate the worst of it and to seek and find acceptance.

Fathers mostly want to fix things.

We see the pain and the challenges, and we want to make them go away. Maybe that comes from living in a culture where heroics are valued so highly. It’s probably not an inherent biological impulse so much as one that’s reinforced from our earliest days. As desperately as we’ve tried to change the gendered messages we give our kids, realistically speaking, I think our sons are still encouraged to embrace the idea of victory rather than arbitration. Batman doesn’t want to talk it out, and dads don’t want their beloved children to work to accept challenges and obstacles. Perhaps most galling of all, we don’t want our kids to be treated unfairly, not even by God.

Regardless of societal expectations or historical narratives, here’s what I can tell you about being father to a daughter with a disability. My greatest battles aren’t against schools or doctors or legislators or insurance carriers, nor are they even against omnipresent, seemingly unshakable societal prejudices. The most brutal fight of my life is against a creeping sense of helplessness, of being absolutely the wrong person for the job.

Schuyler’s great antagonist in her life, what she refers to as her little monster, is polymicrogyria. My little monster is imposter syndrome.

If I allowed myself to sink without a fight, I suppose Father’s Day could be a reminder of my perceived helplessness, of all the times I got it wrong, of the moments in which I felt that I let Schuyler down. But the thing is, that’s never been the case. I may feel those things, and frequently do. But on Father’s Day, I give the day to Schuyler, and I embrace the version of me that she is so keen to celebrate. She doesn’t focus on my uncertainty or my mistakes, although I know she is probably all too aware of them both.

Long ago, when she was a small child, Schuyler heard the term “Daddyo” in a song and decided that was me. I thought it would pass, but to this day she still calls me that, and it’s no exaggeration to say that “Daddyo” is my favorite word in the world. I hope she never stops saying it.

Schuyler sees how much I love her. We’ve been through a lot, from her childhood medical tests to the seizures that rocked her teen years to a divorce and splitting of her family a few years ago. She’s watched me advocate for her, hard, even when I was destined to lose. She’s watched me push back at rude comments made about her in public places. She probably doesn’t remember most of those moments; she was only three when she watched me quizzically as I received her diagnosis with tears in my eyes. But she’s seen my love and my belief in her made real over the years. On Father’s Day, that’s the guy she wants to celebrate. Her Daddyo, like no other father in the world.

If she can believe that’s true, so can I, even if just for one day.

Since the publication of Schuyler’s Monster (St. Martin’s Press 2008), Robert Hudson has remained in demand as a writer and speaker for disability advocacy. Schuyler’s story has been featured in a number of publications including Good Housekeeping and Disney’s Wondertime, and in the disability parenting anthology My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press 2009, edited by Jennifer Silverman, Sarah Talbot, and Yantra Bertelli).

Robert currently serves as Communications Associate at The Arc of Northern Virginia, a nonprofit organization that provides services, support and advocacy for individuals with intellectual and developmental disabilities in the Washington, D.C. area. He lives in Alexandria, Virginia with his wife Adrienne and his daughter Schuyler.