My daughter loves costumes. Ellie is six years old, hyper-verbal, hilarious, and seriously committed to her imagination. I routinely discover her in her room or at her desk—drawing, or constructing a spaceship from a laundry basket and a bean-bag chair and a cardboard box, all while in full costume. Lately, she’s mostly been Thor, or a pirate, or that lesser-known superhero, Pirate Thor. She loves candy. She likes socializing with her friends. It’s easy to understand why she’s been excited about Halloween since at least June.
My son, an eight-year old boy with Down syndrome, doesn’t eat candy. Nico mostly eats plain noodles, yogurt, blueberries, craisins, pretzels, cottage cheese, cheerios, oatmeal, Fig Newtons, some crackers, and applesauce. None of these are Halloween staples.
Nico does like superheroes and other imaginary figures just fine, but he hates wearing costumes. As is typical of many children with Down syndrome, he has texture sensitivities. Costumes, at least the ones my busy wife and I buy for him, tend to be constructed with cheaply made scratchy fibers, designed to be worn once and then forgotten. They rub at the back of his neck and his wrists. Capes subtly change the weight of clothes in ways he finds uncomfortable. He’s happy to put them on for a minute or two, grin, and say, “Batboy!” or (this year), “Superboy,” but then he’s “all done” and impatient to have the itchy garment removed.
As parents, we want to do everything “right,” which generally means conforming to expected behaviors. Disability refuses to conform.
Cold weather is also a problem. We live in Chicagoland; last year’s Halloween had light snow and a biting wind. The year before, it was a comparatively balmy 50, with a raging downpour. Given that the weather has already turned frosty in our hometown, I’m not sanguine about this year either, though I hope we’ll be pleasantly surprised—at least for my daughter’s sake.
Because of all these irritants, Nico just doesn’t do Halloween easily. Yet every year on October 31, my wife and I try to find a costume he’ll wear, convince him to put it over other clothes, and head out into our blustery suburb, trying to make this day meaningful to him, trying to keep our family together as we trick-or-treat.
He comprehends what’s going on; Nico understands vastly more than most people realize. He just doesn’t care about it with any intensity, and often finds the experience actively annoying.
Holidays can be exhausting for people with disabilities—and for their families and caregivers. In most societies, holidays function to create shared social experiences. This can be a socially constructive arrangement, building bonds among members of communities, but establishing norms always puts pressure on people who cannot (or will not) conform. Throughout history, many holidays have served as easy vehicles for repression or cultural censorship. Consider the social consequences of publicly refusing to observe the patriotism of the Fourth of July, the isolation of those with no family to dine with on Thanksgiving, or the endless accusations of a “War on Christmas” for people who dare to say Happy Holidays.
In a pluralistic society, it’s more possible to disregard external pressure to conform to public expectations. But I’m just as concerned with the pressure that we put on ourselves to live up to some ideal of a “typical” member of the community. As parents, we want to do everything “right,” which generally means conforming to expected behaviors. Disability refuses to conform.
Which brings me back to Halloween. We do best when the local businesses open their doors for Halloween, because Nico is happy to walk into a store and look around. He’s social. He’s curious. He simply doesn’t care about candy or want to wear a costume. We often get hostile looks, though, from shopkeepers who just want the kid to take some candy and move on. Nico prefers to explore hair dryers, hardware, vegetable aisles, and especially fire trucks. When it comes to Halloween proper, if the weather isn’t awful, we might get him outside and knocking on doors. He likes knocking on doors. Then he’ll want to go into your living room, explore your house, maybe turn on some lights and use the bathroom. Halloween is an exhausting repetition of “no” from me while trying to get him to say “yes” to take some candy and put it in a bag, to follow the pattern of expected behavior, even if that part means little to him.
Other holidays are no better. There’s no turkey, mashed potatoes (although we’re working on that as it fits his texture profile), or pumpkin pie on Nico’s list of acceptable foods. On Thanksgiving, we sit down at the table and give him a bowl of cheerios and some blueberries. He likes opening presents on Christmas, because new toys are fun, but not necessarily more so than old toys he loves. Christmas is one nice day among many, rather than something to be highly anticipated for months. And don’t try to get him too close to that terrifying man in the red suit at the mall. He never touches Valentine’s cards, though he can read just fine and is very popular with the other kids in his class. Finding eggs and candy on Easter is no more interesting than grabbing candy for Halloween. He’ll do it if asked directly, but it brings him less joy than a good game of soccer followed by a bowl of pretzels.
He’s happy. I feel like I’m failing. I want him to experience the joys of these holidays that I associate with my childhood. My dreams of parenthood included a groaning table at Thanksgiving, glee at Halloween candy, and children too keyed-up to fall asleep on Christmas Eve.
By this point, it should be clear that I am the problem, not Nico. His disinterest in my nostalgia for ritual and social norms has zero impact on his happiness, except when I try to force him to participate in something that has no meaning for him. It’s a classic example of the social model of disability. Nico isn’t disabled by his Down syndrome, but by a society—or a dad—that tries to make him into something he’s not. It’s a lesson I remember almost all the time, though it wasn’t easy to learn, and there’s something about holidays that makes me forget.
This year, when October 31 rolls around, if the weather isn’t too nasty, we’re going to put on a costume and go outside. It is part of my job to expose Nico to new ideas and offer him pathways to new experience. I need to offer him new foods, new books, new friends, new ideas. I will. But I also have to let go of my emotional response when he chooses not to engage, to remember that his choices to buck my expectations can be a strength, not a sign of impairment. Besides, even if we just stay inside and watch other kids trick-or-treat, and talk about it, then maybe invite some friends over and watch a movie, we’re still going to have a happy Halloween.
Demon Week is Pacific Standard‘s series of essays exploring all things diabolical—from devils to dogs, monsters to mental illness.
