Delaney Dunigan usually takes the bus to school, but she was running late one morning, so her father, Mark, gave her a ride. “I’m dropping you off,” he said as they pulled up in front of Walter Johnson High School in Bethesda.
“No, you’re coming in,” Delaney told him.
“Mom said not to,” Mark said.
“Well Mom’s not here.”
He parked his Dunigan Landscaping truck and went inside with his daughter, who insisted on introducing him to everyone who worked in the main office. As she and her father walked down the hallway toward Delaney’s classroom, they saw a young couple leaning against a locker making out. “Oh my God, Dad, you don’t have to see this,” she said. “You can go now.”
It was classic Delaney. In elementary school, she once told a group of teachers that she couldn’t believe her dad was picking her up because he usually sat around in his underwear all day drinking beer. She uses air quotes when she talks, and does the dab—the dance move that went viral last year—when you wouldn’t expect it. She calls her 11-year-old brother Patrick’s friends her “boys,” and gives them pep talks during their basketball games. “The thing about my boys is to keep them in line,” she’ll say. When Mark was coaching in a tournament three years ago, Delaney stood up during a timeout, in front of hundreds of people, and told her dad to stop yelling at the kids and calm down. A few moms cheered her on from the bleachers.
Mark didn’t know anyone with Down syndrome when he was growing up in Montgomery County, except a few kids he’d seen in high school who seemed lonely and isolated, so he wasn’t expecting much from Delaney. He wasn’t even sure if she’d talk. Nobody at the hospital gave him and his wife, Emily, a list of places to go for help or told them their baby girl had a great life ahead of her. A neonatologist handed Emily his own copy of Babies with Down Syndrome, and someone scribbled down the phone number for the Montgomery County Infants and Toddlers Program.
“You never know,” a doctor said of Delaney’s future.
Now 18, Delaney grabs her wireless speaker when friends come over, blasts Taylor Swift’s “Shake It Off,” and starts singing and dancing in the living room of the family’s Kensington home. She’s on two cheerleading teams, acts in plays at Imagination Stage and gives speeches on behalf of Best Buddies. It’s hard to get her off her iPhone, and lately she’s been begging her mom to let her join Instagram. She’s tried to get out of things she doesn’t feel like doing, like getting up to get a glass of water, by saying, “I can’t do that—I have Down syndrome.”
A few months ago, Delaney got upset one night when her parents laughed at a comment she’d made, but sometimes they can’t help it. “You have to understand something,” Mark told her. “When you were born, we didn’t know how much you were going to do, and how much you would say, and how funny you would be. So me laughing right now is a really good thing.”
***
A conversation with Delaney tends to jump around a lot. She’ll go from talking about a friend who went to see Adele without her, to the spicy chicken at Chipotle (which her dad thought she liked but she doesn’t) to how she wants to live at home forever.
“Stay on topic, honey,” Mark says after she starts to tell a story about the time she stepped on a bee because he let her go outside without shoes on.
“I’m trying,” she says. “Delaney, stay on topic. Stay on topic.”
There are certain subjects that keep coming up. She doesn’t like bees, thunderstorms or big dogs who jump, except for her family’s black Lab, Dewey, so she’s been practicing ways to deal with her anxiety. “I breathe in and I breathe out. And count to 10,” she says. She’s been through two open-heart surgeries—about half of babies born with Down syndrome have a heart defect—but she’s so afraid of needles that it can take five adults to get her blood drawn. “It just freaks me out, and then I kick everyone,” she says. “They have to pin me down.”
Delaney also likes to talk about her phone. It drives her crazy when she gets stuck in group text threads she can’t get out of, or when friends message her while she’s trying to sleep or away with her family. “If I’m at the beach, I cannot use my phone,” she says. “I’m like, ‘guys, vacation time, goodbye.’ Like seriously, I can use my phone at bedtime, but not during the day because I want to go to the beach, enjoy myself, relaxing, the ocean, having a good time, building sandcastles with my brother, hanging out with Mom and going surfing.”
Even though she’s a senior in high school, Delaney doesn’t like to be far from Emily. She’ll FaceTime her mom from upstairs and give her hugs while they’re standing in line at Giant. Delaney has friends with Down syndrome who go to sleepaway camp in the summer, but she doesn’t want to. It bothers her when Emily goes out, even for a few hours. “I’m leaving after dinner and I’ll be home before you should be off your phone,” her mom tells her, sometimes days in advance. Still, Delaney often starts to cry.
For Emily, 51, the tears are a reminder that even though her daughter often acts like other girls her age—she’ll talk about her “on and off” boyfriend or the drama at school—in many ways she isn’t. She can make herself a sandwich, but she can’t use the oven or the stove. She often recites her schedule aloud. “I’m waking up, I’m going to school, I’m going to come home from school, and I’m going to take a shower,” she’ll say. She’ll call almost anyone she has in her contacts list just to say hello. “A typical teenager loves to use the phone and text and FaceTime friends, but a typical teenager does not text and FaceTime her mother’s friends,” Emily says with a laugh.
Emily realizes how lucky she is that Delaney is so affectionate—“It’s a gift,” she says—and that she and Mark have always had their families nearby to support them. She knows that many parents of children with special needs have a harder time than they do. But lately Emily’s been filling out benefit forms from the state’s Developmental Disabilities Administration, and she’s starting to worry about what happens next. Delaney’s happy in Walter Johnson’s Learning for Independence (LFI) program, where she’s been working on her typing skills and recently read a modified version of To Kill a Mockingbird; she can stay in the program for three more years. But other moms have told Emily that it’s hard for adults with disabilities to find jobs after high school because there aren’t many places that will hire them. Emily knows two young men with Down syndrome who live together in Rockville and have a caregiver helping them for just a few hours at night, but it’s hard for her to picture Delaney living on her own. What would she do in an emergency?
“It would be amazing if she got an apartment with a friend,” says Emily, who works part time as a crossing guard and recently got her real estate license, “but she’s still young to me. I don’t see it happening for maybe another seven years.”
Then again, nobody knows what Delaney might do. Emily still remembers the woman who said her daughter may never jump because some kids with Down syndrome can’t. That’s the most ridiculous thing I’ve ever heard, she thought. So she went out and bought a mini-trampoline and let Delaney start practicing. An elementary school speech teacher told Emily that Delaney had probably gone as far as she could, that she wouldn’t be able to speak clearly, and conversations would always be hard for her.
Last June her daughter gave a speech at the Race4Respect in D.C. in front of about a thousand people.
