When longtime journalist Erin Croyle’s son was diagnosed with Down syndrome in 2010, she found herself entering an unfamiliar world, full of new jargon she couldn’t parse and hurdles she’d never expected.
“It’s like learning an entire new language,” Croyle said. “Depending on what state you live in, the systems are different, there are supports that are different. It’s confusing.”
She knew she would need help navigating her new reality. In her search for a community and a support system, she found her new life’s work as an advocate.
For nearly a decade, Croyle has served as a communications specialist with the Center for Family Involvement at the Partnership for People with Disabilities, a program of Virginia Commonwealth University’s School of Education. The grant-funded organization is staffed entirely by people who have a disability or a loved one with a disability, and it provides emotional and informational support for people and families living with a disability.
In 2023, Croyle launched The Odyssey, a podcast featuring stories and experiences highlighting issues that families and caregivers of people with disabilities face. Episodes are released monthly and cover everything from the occasionally isolating experience of being a parent to the realities of learning how to support a loved one.
“I really wanted to launch [the podcast] because there is so little content out there for families and caregivers who have loved ones with disabilities,” she said. “It’s a very different life experience. Fourteen years ago when I was a new parent, I just felt so alone and there was nothing out there that I could relate to, and I wanted there to be something like that. I am a journalist by trade, I have the skills to do it, and so I said, ‘Let’s do it.’”
In one episode, Croyle goes over the minutiae of applying for Medicaid waivers; in another, she discusses practical ideas for self-care. Podcast guests share a range of lived experiences, but they all have the same goal of educating and identifying with their community.
Heather Trammell, the director of family support at the Down Syndrome Association of Northern Virginia, is one of the people Croyle met early in her journey after her son’s diagnosis.
“I love that she took the initiative to seek us out,” said Trammell, remembering the early days of her friendship with Croyle. “Not everybody does. … There are people who don’t reach out for support, and I always feel very badly for them that they feel that they’re out there on their own – when really there’s a lot of us that are willing to get in the trenches with you.”
Trammell knows how difficult it can be to navigate the changing world of helping to care for someone with a disability. She also has a child with Down syndrome, and she can remember being in the same position that new parents and caregivers find themselves dealing with every day.
“It’s difficult to say, ‘I know how you feel,’ but I definitely never forget how it felt to be on that end when I didn’t know what was coming down the pike,” she said. “I wanted to know I wasn’t alone, and that’s one of the things that I really love about my position, making sure that parents realize they are in the company of friends and men and women who get it.”
This past September, Trammell joined Croyle on The Odyssey to discuss how the Down Syndrome Association supports families whose child or loved one has been newly diagnosed with the lifelong disability, as well as sharing her own experience finding out about her child’s diagnosis.
With the podcast now in its second season, there is no shortage of topics to cover.
“There are so many stories to be told because so little is out there,” Croyle said. “I have so many ideas. There’s not enough time. [If the podcast] were all that I do, I could have a different interview every week.”
As The Odyssey continues to build, she hopes to keep reaching people in search of the same community she once hoped to find, as well as opening up an avenue for others to share their stories.
“There are so many conversations to be had and so many voices out there that need to be heard,” Croyle said of the podcast. “Not only does it open my community and my vision and perception of the world, [but] it also allows for other people to be heard.”