‘Here, everyone is perfect’
At RHD’s Live Yes Studios in Lincoln, Nebraska, Kelli has been working with a Dynavox speech generating device to speak — just the latest example of how much she’s grown at the arts-based day program, where staff has adapted services to meet her unique needs. Kelli has cerebral palsy and is in a wheelchair, and for years Kelli communicated on an alphabet pad, spelling out each word. Her staff carried a notebook to record what Kelli spelled out; she likes to have lengthy conversations and sometimes the staff needed help keeping up with her.
Now Kelli types and the Dynavox “speaks”whatever she enters. Kelli had her first spoken conversation with friends and staff in the studio, and recently ordered lunch from a local eatery with total independence.
“Learning how to communicate with her was key, obviously, but she’s so open and she loves to talk to people and teach people how to talk with her – Kelli made it easy for us to learn how to communicate with her,” said RHD Nebraska Vocational Support Manager Natasha Scholz. “When we’re out at a show, you can see people kind of underestimating her because she’s in a wheelchair – they’ll talk very slowly and speak loud. And she’s adamant about telling people: ‘I am mentally fine. Don’t pass me by, I’m a smart, accomplished woman, and I love to have conversations, I just can’t do it verbally, so I can communicate this way.”
Spelling out her thoughts on her keypad, Kelli said: “Most day programs mainly deal with mental disabilities. Physical disabilities are overlooked. I’m not mentally disabled, but you guys will adapt things for me. This is a great place.”
Live Yes is an alternative arts-based day program for adults with developmental disabilities that seeks to foster individuality and create a space that celebrates the unique abilities each person brings to the studio. With Kelli, that meant adapting programming to meet her physical needs.
For a class on splatter painting, for example, Kelli and her staff spent a few minutes brainstorming on how best to approach the medium. After some fits and starts, Kelli asked for someone to hold a stick out in front of her so that she could hit it with a paintbrush. It worked, and quickly Kelli was painting with the rest of the class.
“That’s one of the things about our staff that I’m so proud of – most of them are artists, but teaching art is not their only job,” Live Yes Director Craig Casados said. “Their job is to cultivate relationships and provide a safe and enjoyable environment to everybody here. Every person on our staff is a teacher, but they’re also counselors, therapists, nurses, clergy, you name it. If you work here, you do a little bit of everything, and our staff embraces that.
“That’s why our clients feel so safe and secure here. They understand every staff member here will do anything for them.”
Recently Kelli announced that she wanted to learn sewing. And the staff set about adapting to this new challenge.
“Kelli has improved her motor skills so much, and she’s grown so much, we’ve gotten used to the idea that she can do anything she sets her mind to – but we still thought, wow, that’s a lot,” Scholz said. “We just had to figure out how to help her work with a sewing machine.”
The program had a sewing machine donated, and staff went to work modifying it to fit Kelli. She kept telling the staff what she needed, the staff kept working to meet her needs, and soon enough Kelli was sewing.
“Up here, Kelli’s a PhD, man,” said Casados, tapping a forefinger to his temple. “Our staff had to learn to work with her. But we train our staff to multi-task, to be able to work with everybody, to meet people’s needs no matter what they are.
“We’ve gotten to the point with Kelli where there’s no limit with her.”
In addition, Live Yes staff works with Kelli to make sure she can physically manage the act of creating art in various mediums. With a modified form of physical therapy, stretching and exercises, Kelli’s mother Lynne said Kelli has gained more mobility and strength working at Live Yes than she did in years of standard physical therapy.
“I can’t imagine not having Live Yes for Kelli to come to,” Lynne said. “This is one place I know, no matter what, that she’s perfectly safe, with people who have her wellbeing and her happiness totally at the forefront. I don’t have to worry about a thing. She comes home every day and immediately starts telling me what she did that day, and what happened, and what she gets to do next. This is the only place that ever given her that.
“The staff finds a way to enable people to be the best they possibly can be. It’s phenomenal. They focus on the individual, not the disability. They’re amazing that way.
“The staff is an incredible cast of characters. They’re all extraordinarily talented artists in their own right. I see it as a huge group of friends working together to make themselves better. The clients make the staff better people, not just the other way around. They both benefit from each other. There’s genuine enjoyment of the people they work with. I can’t imagine any of the staff here being anywhere else — they’re perfect here; everyone here is perfect at the same time. They go off and do other things, but here they’re perfect for that moment in time.”