Keya Shapiro grew up in neuromotor therapy.
Since she was 13 months old, the same group of therapists have been working to help her navigate the world as she wants to.
Dr. Stephanie DeLuca, the co-director of the Neuromotor Research Clinic at the Fralin Biomedical Research Institute at VTC in Roanoke, and Mary Rebekah Trucks, a senior occupational therapist with the program, have been working with Shapiro since she started therapy in Birmingham, Alabama.
Shapiro suffered a stroke in-utero, and was born with hemiparesis, a weakness of one side of the body. In her case, it was her left side, with her left hand particularly limited.
For the first months of her life, Shapiro, now 18, had a neurologist who said she would likely never be able to use her left hand.
Her parents didn’t agree, instead opting to enroll Shapiro in ACQUIREc therapy.
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ACUIREc is one of a family of different types of neuromotor therapy’s under the ACQUIRE umbrella. In this case, the lowercase “c” stands for constraint. A cast is placed on a patient’s stronger appendage, and they perform tests, such as playing with toys in early stages, with the affected appendage.
DeLuca was one of the developers of the spectrum of ACQUIRE therapies. As she explains it, one of the biggest differences between ACQUIRE and the average adolescent neuromotor therapy program is the intensity.
“On average, a child will get somewhere between two and four hours of therapy a week,” DeLuca said. “So, if you do the math, when we said we saw Keya for six hours a day, five days a week, across for weeks, that’s 120 hours of therapy, so it’s like putting a whole year’s worth of that traditional therapeutic process into one month.”
The other major difference, according to DeLuca, is the focus on encouraging patients – typically young children – to learn motor skills. This means making the tests as enjoyable and play-based as possible, and conducting the tests somewhere comfortable.
“For traditional therapy, you would take a child to the therapist,” DeLuca said. “We take therapists and go to the children whenever possible.”
In Keya’s case, she would travel with her parents from Alabama to Roanoke when the clinic moved to Virginia Tech-Carilion, and rent an AirBnB, and either DeLuca or Trucks would visit. They would do the intensive therapy for a month nearly every summer, from the time Shapiro was 13 months old until she graduated high school.
“They’re basically like family to me now,” Shapiro said.
Those year’s paid off for Shapiro. At first, she was taught how to grip things, and do intricate movements with her fingers. Eventually, she worked her way to pretty much any complex task imaginable.
“As I got older, I came in wanting to learn specific things, like how to do my own hair, or how to hold a tennis racquet in a certain way to play better,” Shapiro said.
Those involved say Shapiro’s level of success is attributable, in large part, to her repeated visits to the program, through trials that she said were frustrating in early days. Many patients only go through one round of therapy, while Shapiro went nearly every year for most of her life.
“She’s a hard worker,” Trucks said. “We met her when she was 13 months old, and really watched her grow up and make progress.”
At this point, Keya said she’s gotten to the point where most people would never guess she’d had a stroke. She plays tennis, does photography, and has recently started college in Minnesota, where she hopes to go into medicine herself.
“The repeated visits made a world of difference,” Shapiro said. “It was frustrating, and Mary Rebecca could usually tell when I was getting frustrated, and let me take a break, but any goal I set for myself, I managed to accomplish.”
Trucks said that for every patient she’s seen, with hemiparesis or other forms of paralysis, she’s always seen progress.
The ACQUIRE therapy is something DeLuca hopes to see expanded. She has trained many practitioners at other occupational therapy clinics, and wants to see the training spread to many others, to fill gaps she sees in the way most children are given therapy.
“That’s what we’ve tried to do, is to create a protocol so we can train others to help maximize learning, and to help children really maximize their skills, with more intensive therapy,” DeLuca said.