A few weeks ago, we shared a post by Hillary Savoie, who wrote about a startling conversation with a receptionist who told her that her biggest fear was having a child with a disability. We’ve invited Hillary back to share another story about her daughter’s interaction with a curious little girl with a lot of questions.
A few weeks ago I was in our grocery store parking lot getting Ezzy settled and feeding her the last of her tube-food before we headed in when I noticed a familiar face walking toward us. It was Marilyn Hunter, one of my high school Spanish teachers. We’ve run into each other a few times at this same grocery store and have had the chance to catch up about our lives. So, I was able to figure out that the little girl tagging alongside her must be her granddaughter Violette, who is just a bit older than Esmé.
There have been times when it is hard for me to be around children Esmé’s age. It isn’t something I’m proud to admit, but it is the truth. I find myself, for the first time in my life, uncertain about how to interact with many young children. I feel shocked by their abilities, saddened by their independence, and worried about making Esmé feel jealous or left out. I have found, however, that by talking with young children about and around Ez we can connect rather easily in the space where Ez gets to be the center of attention (as she likes), the child is encouraged in his or her natural state of curiosity, and I can speak about my favorite topic: Esmé.
So rather than stew in my uncertainty about young children, I tried to be open to engaging Violette about Esmé. She didn’t need much help in that respect!
Violette is 5 ½, a year older than Esmé—and she noticed how different Esmé is after little more than a glance. This, frankly didn’t totally surprise me. In fact, it mostly confirmed what I have been reading in the faces of adults who are too socialized to not try to hide their confusion and curiosity.
“Is she a baby?” Violette asks. I’m struck by the question…because it is not something that you ask if you are sure a baby is a baby, right? So, she must recognize that Ezzy is somehow different from baby, but also that she sees something baby-like in her.
“No, she isn’t,” I respond, always aware that Esmé is listening. “She’s a big girl. She is 4 ½. You are five, right?”
“5 ½,” she watches carefully as I push the last of Esmé’s food into her stomach through her feeding tube. “Did a doctor tell you to do that?” I am a bit surprised by this question, until I realize—she is asking the child-size version of “Is she receiving proper medical treatment, or are you a giant weirdo?”
“Yes, a doctor told us how to do this. Esmé cannot use her mouth to eat, so she eats right into her stomach.”
“Because she cannot swallow easily. It isn’t safe for her to eat with her mouth.”
“Because her muscles work differently, and that makes it hard for her to use her mouth do things like swallow safely or talk. That’s why Ezzy has the tube, right Ezzy?”
At this point I’ve taken Ezzy out of the car and am crouching down to hold Ezzy up so she can stand next to Violette. I lift her hand up and say, “Ezzy, say hi to Violette.” Esmé’s body bobs and and wiggles, her head lags to the side. She is silent but I can tell that she is checking Violette out, looking from the corner of her eyes in a non-committal but curious way.
“Oh, why is she not saying hi?”
“She doesn’t talk yet, because of her muscles. But you have ways to show us what you think, right Ez?”
“But she is 4 ½?”
“Yes she is doing a lot of things a bit differently than many other kids. And that’s ok. She understands though–she understands everything you say. And she can read. And she uses cards to tell us what she wants. Right Ezzy? Your “Yes” and “No” cards are really helpful!”
“OK. When she’s five she’ll talk, right?”
“I’m not sure. I don’t know if she’ll ever talk like you and me with her mouth. Ezzy you do try a lot though and we love your words! But that’s ok. Some people don’t talk ever, even when they are grown up. But they find other ways to tell people what they think. Everyone is different, it is really cool.”
“Why does she move like that?”
I look down at Ezzy, whose body I am absentmindedly supporting as she hula-hoops her hips and throws her weigh backwards against me, as her arms and feet dance in the constant motion that I am so very used to, that I forget it is remarkable to others.
“These are good questions,” I say to alleviate any concern that Violette’s grandmother might have about the conversation. “It is good to ask your questions. Esmé has something called a movement disorder. That’s why she swings her arms around like this. The movement is called choreoathetoid movement—it means “dancing.” It is like she is dancing all the time.”
With this comment Violette seemed temporarily satisfied, but soon I could see her next series of questions passing through her mind. I think her grandmother saw it too, and we both looked back toward their groceries, worried about the heat. It was clear that Violette would not soon run out of questions–and while I’d happily talk with her about Ez all day, perhaps the hot pavement outside the Price Chopper with a car load of groceries wilting in the sun wasn’t the ideal spot. So we said our goodbyes and moved on with our days.
As I Esmé and I headed inside to do our shopping I kept smiling, oddly reassured by this conversation with this little girl. There was so much honesty in her questions—and they revealed to me the things that other people must want to ask–and made me think of ways to address the questions other people might have but are afraid to ask.
But I guess more than that, there is an aspect of Violette’s questioning that makes me think of my own internal dialogue about Esmé–the curiosity that comes from being invested in someone else, of wanting to understand what makes them tick. In Ezzy’s case, this kind of investment is a requirement of keeping her safe in the world. Esmé cannot exist in circle of people who are ambivalent about her, who aren’t asking questions about what is best for her. And, often, as I do these days of searching for yet another nurse/caregiver, seeing people scared away by the care challenges she poses, by her lack of speech, by her needs, I wonder how many people there are in the world who know how to care for and about children and adults like Ez. I worry how little the world is made to support people who are so different. I worry that smart and curious little girls and boys will be encouraged to grow up to be smart and curious about the law, about surgery, about business, about politics–but not taught that a life spent in compassion and curiosity about the diversity of human abilities has the kind of value that is hard to explain until you are dancing in it with a person like Esmé.
Talking with Violette, I was reminded that the more Esmé’s peers have opportunities to engage with Esmé, the more invested they will be in her–and other people like her. The more likely they will be to understand the gifts involved in knowing and understanding someone like Esmé. And I was heartened because I knew that by meeting and learning about Esmé Violette was changed–even if it was just a little bit. That her curiosity is a sign that she was invested, that she will keep asking questions about Esmé until she is satisfied with the answers.
And who knows where that might lead her…
Hillary Savoie, PhD is a writer, disability rights advocate, and the founder of the Cute Syndrome Foundation. Hillary’s micro-memoirs, Around And Into The Unknown and Whoosh, about her medically-fragile daughter, Esmé, were released in 2015 by Ponies + Horses Books. Hillary’s writing has also appeared on a number of websites, including the New York Times parenting blogMotherlode; The Mighty; Complex Child magazine and the Boston Children’s Hospital’s blogs Thriving and Vector. Hillary earned a doctorate in Communication and Rhetoric at Rensselaer Polytechnic Institute in 2013.
Kids Included Together (KIT) is a non-profit located in San Diego, CA and Washington, DC. We help make the world a more inclusive place by providing live and online training to people who work with kids. We teach strategies, accommodations and best practices to include kids with and without disabilities in before & after school programs. Inclusive environments create stronger communities. Learn more about our work at www.KITonline.org.