EMILY WHANG / NEXTGENRADIO
What is the meaning of
home?
Rosie Pasqualini speaks with Dustin Sheridan and Nancy Edson about Dustin’s journey toward independence. As a man with Down syndrome, Dustin hasn’t always had the support and resources needed to live alone. But now, in his own apartment, he has created a new sense of home.
‘It’s all green’: Dustin Sheridan finds new comfort by building a space of his own
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Dustin Sheridan: When I feel home, it’s like, I really felt more comfortable than I have.
I’m Dustin. People call me Mr. D.
Nancy Edson: I’m Dustin’s mom, Nancy. I live about 10 minutes away. So I can be here if I need to be. And I’m retired, a retired teacher.
It was not in, you know, even my brain that he could ever live alone.
He’s had good places in the past, but now he’s just kind of where he feels he wants to be.
Dustin: It’s a lot more comfortable. Just, I have it all green. I got new cabinets on top. So redoing, replacing the new cabinets.
Nancy: I want to point out how far he’s come, and how much he couldn’t have done it without the laws changing, and people being involved, and caring enough to set up services, and work for nonprofits and things like that.
Do you feel comfortable at the Farmer’s House?
Dustin: Oh, yes.
Nancy: Two women who had children with disabilities got together and decided that they’re going to start this program to teach people how to work, so that’s what we did. And he put peaches in cartons, and I made sure he had the right amount in and it just built from there.
Dustin: I have a new friend, Zach, he’s my best friend in the Farmer’s House. He knows me and we always talk together, and we sit there for lunch.
Nancy: Whether they go on outings or sometimes they just stay there and watch movies and play games.
Nancy: He kind of goes deeper into things and instead of just wanting another movie, we’ll find out who made it. And then ask me to get them on Amazon or get them from the library.
(Sound of “I’m On Fire” by Bruce Springsteen)
Dustin: Bruce Springsteen. He’s an icon.
Dustin: [I’m] pretty good at, uh, comedy.
Nancy: Actually, about everybody who’s worked with him has said he’s the funniest person they’ve ever worked with. He does have a great sense of humor. Um, and he’s recently taken a class in stand-up comedy.
He’s been through a lot of jobs. Sometimes he wasn’t the right fit. Sometimes the place just didn’t, you know, wasn’t right for him. But he’s been at McDonald’s the last five years. Um, working. He calls it the night shift. He works from two to six. And he’s very happy there.
Dustin: I worked four days in a row. Uh, Thursday, Friday, Saturday, and Sunday. And I get paychecks Monday.
Well, McDonald’s [is] also part of my family.
I’m a family man. Making a schedule for the family things.
Nancy: We love it. (Laughs)
Dustin: Part of me is in my heart, because my heart is here, and my heart at work, and most of all, my heart is uh, my family. My mom and my sister.
Nancy: He was born in 1975. And at the time, the doctor told me that he was Mongoloid, which you didn’t even know what that was, thank goodness. But that’s what they used to call Down syndrome. And he said, a lot of them at that time, still were going into institutions. And he said that, you know, you can take him home, but, you know, don’t expect much.
I guess just seeing him make it into a home like this, do his own shopping, just being so independent. It’s, it’s been such a long road to get here. Yes, for me, but for him and for the agencies that weren’t even here in the beginning when he was born.
Dustin: Well, I’m standing at home right now. It feels like home.
Before Nancy Edson brought her son, Dustin, home from the hospital, the doctor told her, “Don’t expect much.”
At the time of Dustin Sheridan’s birth in 1975, there were fewer resources available to support individuals like himself with Down syndrome. Children with Down syndrome were still being placed in institutions that were often neglectful or abusive, a practice that continued as late as the 1990s, according to the Global Down Syndrome Foundation.
“It was not … even in my brain that he could live alone,” Edson said.
But today, Sheridan has a place of his own in Platte City, Missouri.
“It feels like home,” he said.
Dustin Sheridan and Nancy Edson spend time together at Dustin’s apartment on Monday, April 1, 2024. Edson has supported Dustin in his journey toward independence.
ROSIE PASQUALINI / NEXTGENRADIO
A lot had to change in order for Sheridan to move into his own apartment. Edson said that getting to the point of moving required local support from programs like the Platte County Board of Services, as well as societal change.
A space of his own
Sheridan’s apartment is — as he put it — “all green.” He was proud to choose the color of the walls, which illustrates his family’s Irish heritage. A hand-painted shamrock, prints of Celtic knots, and a map of Ireland also feature prominently in the living room and kitchen.
And it’s not just the decor that matters to Dustin. His apartment is clean and tidy; the tables shine. Nothing is out of place.
It took some time for Sheridan to get settled in. Moving into a new space can be stressful for anyone, and for Sheridan, who feels most at ease with clear structure and routine, adjusting to the new space was a somewhat challenging process. He said that the “kitchen was a tornado” and the cabinets needed to be replaced.
But the space began to feel more like home over time.
“I really feel more comfortable than I have,” Sheridan said, “with everything I have in here.”
This “everything” includes space for a variety of interests and passions. In addition to his collection of Irish mementos, Dustin has plenty of room to store and organize dozens of horror movies. He’s stacked shiny DVD cases in plastic bins by the TV for easy access.
Dustin Sheridan stands in front of Irish wall decor, including handmade art and a map of Ireland. Sheridan enjoys learning about his family’s Irish heritage.
ROSIE PASQUALINI / NEXTGENRADIO
“I really feel more comfortable than I have… with everything I have in here.”
Dustin Sheridan shows off his extensive horror movie collection. Sheridan and his friends get together every Wednesday to watch movies.
ROSIE PASQUALINI / NEXTGENRADIO
Sheridan “goes deeper into things,” as Edson put it. “Instead of just wanting another movie, we’ll find out who made it. And then [he’ll] ask me to get them on Amazon or get them from the library.”
Sheridan’s apartment has also helped him form new connections. He’s unable to drive, which can make it challenging to meet new people. But since moving into his apartment, Sheridan has formed a close-knit group of friends. They call themselves “the 3 Ds”: Dustin, Darren, and David. They all live in the same apartment complex, which makes it easy for them to meet up.
“We always do movie night, every week on Wednesday,” Sheridan said.
“The Three Ds,” Darren (from left), David and Dustin Sheridan, celebrate St. Patrick’s Day together at Sheridan’s home. The three friends live in the same apartment complex.
PHOTO COURTESTY OF NANCY EDSON
A 2023 study published in the journal PLoS One found that “most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights.”
When creating his support service plan for the next year, Dustin indicated that he would like to become more involved in his community, cook at home more often, and begin a romantic relationship.
Paving the way for independence
Down syndrome is the most common chromosome-related disorder. Approximately 1 in 700 children are born with the condition, which can affect communication and mobility.
The year Sheridan was born came with some important moments for those with disabilities. The Individuals with Disabilities Education Act (IDEA) was signed into law that year, though under a different name. The Developmental Disabilities Assistance and Bill of Rights Act also went into effect that year.
But the passage of the American Disabilities Act was still 15 years away. And The Farmer’s House, a program that is now at the core of his social life and career development, wasn’t available until Sheridan was in his 30s.
babies are born with Down sydrome each year.
The transition from childhood to adulthood may pose additional challenges for those with Down syndrome. For instance, healthcare providers are not always equipped to treat adults with the condition. Many adults with Down syndrome continue to see pediatric providers, which is linked to worse health outcomes. Care gaps such as these may make it even more challenging for adults with Down syndrome to find the support they need — medical, social, or otherwise.
Sheridan and Edson were originally connected to the new apartment through the Platte County Board of Services, which also came to be the year Sheridan was born. The Board helps individuals with disabilities find homes, access transportation, and engage with their communities.
The services that have empowered Sheridan to live on his own also led to his job at McDonald’s, which he’s had for five years. At previous jobs, Dustin didn’t always have the support he needed to perform at his best. Now, transportation assistance and a more flexible schedule have enabled Dustin to thrive.
Dustin Sheridan uses a dry-erase planner to help keep up with his busy schedule. A big wrestling fan, Sheridan will be attending a WWE event on April 29.
ROSIE PASQUALINI / NEXTGENRADIO
“They’re very happy with his work,” Nancy noted.
Sheridan described his coworkers as “part of [his] family.”
“My heart is here [at the apartment],” he said, “and my heart [is] at work, and most of all, my heart is my family. My mom, and my sister, and my siblings.”