A BITTERSWEET PREDICAMENT
Madeline lies on the couch with her mother in the living room of their home. She was feeling sore from the previous day's work at Top Crops.
Madeline McKinnon, 23, and her mother, Aaran, 51, stand side-by-side in a matrix of raised garden beds, plucking radishes from the soil to sort and clean.
“Ouch! These ones are pokey!” Aaran complains.
“That’s why I’ve got my gloves on,” Madeline replies, laughing devilishly.
The pair makes a 30-mile pilgrimage most weekends from their home in Portland, Tennessee, to Top Crops, a Bowling Green garden for individuals with special needs, situated on a small patch of Western Kentucky University farmland. It’s their chance to work alongside a small group of adults with special needs and be part of a community familiar with their circumstances.
At Top Crops, a Bowling Green gardening project for special-needs adults, Madeline helps clear out a greenhouse full of tomato plants.
Madeline walks on a treadmill in her mother's bedroom at their home. Aaran says Madeline usually finds it easier to walk inside, where she can watch a TV show on her phone or iPad, while she exercises.
“She’s the first documented case ever,” says Jon, her father. Her condition is so rare that it has no common name.
Although her condition differs from most of those that are broadly categorized as special needs, such as Autism Spectrum Disorder and Down syndrome, Bowling Green and Top Crops allows Madeline to connect with a community of others with some degree of common experience. While Madeline and Aaran go to Top Crops together, it fosters independent relationships.
Madeline colors in a page her mother printed for her at the desk in her room. "Her spirit animal is a sloth," Aaran says.
Madeline and Aaran use an iPad to work on an art puzzle application, which they do together to help keep Madeline's cognitive skills sharp. They have an extended list of tasks like this they rotate through in no particular order, which serves as a form of home therapy.
Jon and Aaran share a moment together before dinner with Madeline. Jon works as an addiction counselor in Nashville. Aaran says she and Madeline usually try to wait for him to get home so they can eat dinner together, which can be tough.
Aaran helps her daughter spoon casserole mix into a dish. Madeline, who suffers from hypotonia, often struggles with basic tasks such as this. Aaran always pushes her to help out around the house to improve her skills.
Madeline can connect with other special-needs adults, while Aaran can share advice with special-needs parents. In a community as small as Portland, there are fewer opportunities for Madeline and Aaran than in Bowling Green.
Though relocation would offer Madeline more opportunities to connect with folks like her friends at Top Crops, it is not financially feasible at the moment while Jon pursues his doctorate and works in Nashville as a counselor. The couple shares concerns for where Madeline will end up once they are gone.
“In this country, there are not places set up for folks with special needs or disabilities,” Aaran says. “We just pray about it, hard, all the time.”
Madeline McKinnon and her parents, Aaran and Jon, pray before eating a casserole she and her mother made from potatoes they harvested together at Top Crops in Bowling Green the day before. Madeline and Aaran travel to Top Crops most weekends from their home in Portland, Tennessee, so that they both can benefit from being part of a community of special-needs adults and their caregivers.