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.
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.
“I really feel more comfortable than I have… with everything I have in here.”Dustin Sheridan
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.
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.
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.
“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.”
This story was originally created as part of the NPR Next Generation Radio project.
