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.
“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.
“You never have to tell (Madeline) how to do something more than once,” says Carol Greer, who started Top Crops for her own daughter.
“(Jenna) was our motivation for starting the garden,” Carol says. “But she does not like to get dirty.”
“I love to get dirty,” says Madeline, laughing.
Madeline’s condition is beyond rare. As she puts it, “Chromosome 21 breaks off and decides to go party, I think, on 18.”
“Eighteen goes to 13,” Aaran interjects. “(21) is just deleted.”
“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 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 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.
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.
At Top Crops, a Bowling Green gardening project for special-needs adults, Madeline helps clear out a greenhouse full of tomato plants to make room for next season's crop.
Aaran and Madeline share a moment at Top Crops. Having ripped up a few rows of rotting tomato plants to make room for the next season's crop, Aaran pantomimes a reaction to the smell.
Aaran has a mug of tea in the kitchen while Madeline takes some down time in the living room of their home.
Aaran and Madeline take a moment for breath-prayer before they leave the house for the day. Aaran does this with Madeline regularly, in order to help relieve her of anxiety and stress.
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 colors in a page her mother printed for her at the desk in her room. Although Madeline has an affinity for most animals, Aaran says, "her spirit animal is a sloth."
Jon and Aaran share a moment together before dinner with Madeline. Jon works as an addiction counselor in Nashville. He says it is both fulfilling and exhausting. Aaran says she and Madeline usually try to wait for him to get home so they can eat dinner together, which can be tough when he comes home late.
Madeline reads a book in her room after dinner while her mother and father lie on the living room couch. If left to her own devices, the couple says, there's little else Madeline would rather do than read.
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.