A new program created by Jazz St. Louis (an A&E Sustaining Grant recipient), St. Louis Children’s Hospital and Washington University Neurofibromatosis (NF) Center is addressing frequently delayed skills in children with Neurofibromatosis Type 1 (NF1). The program, called “Beat NF,” combines jazz and physical therapy to promote socialization and improve gross motor skills in youngsters ages two to five with NF1.
“Dr. David Gutmann, who is a season subscriber at Jazz at the Bistro, is also director of the Washington University NF Center. He felt a program that blended the improvisational aspects of jazz with physical therapy would be greatly beneficial for these kids,” said Phil Dunlap, director of education for Jazz St. Louis. “The idea was to use jazz in an interactive way to help children improve their gross motor skills but make it so much fun, they wouldn’t even know they were getting therapy.”
NF1 is a genetic condition that affects one in 2,500 individuals worldwide. It affects almost every organ system, causing a predisposition for tumors to grow throughout the body. Children with NF1 can also struggle with autism, developmental delays, learning problems and attention deficit.
Dunlap explains that with input from a physical therapist at Children’s, he and a Maryville University music therapist wrote most of the jazz for the program. “The music is designed to get the kids to do certain actions aimed at building their gross motor skills,” Dunlap said. “This includes making eye contact, improving coordination, following directions and playing instruments.”
To date, there have been three five week sessions, with a fourth session planned for this summer. Sessions are free and each has attracted between six and eight children and their parents.
“We start each class with a welcoming song that’s meant to help these kids build confidence in a social setting,” said Dunlap. “The song is interactive so each child will stand up and say their name in front of the group. It’s a big thing for these kids to stand up and feel comfortable in front of others.”
Each class also introduces a “mystery instrument” through puzzle pieces the children assemble. A special guest is then revealed to play the mystery instrument, said Dunlap. Other songs are designed to get the children limber and working on motor movements, including shaking hands and navigating a small obstacle course.
“Our physical therapist measures the motor capability of children at the start of each session,” explained Kirsten Brouillet, Team NF Coordinator at Washington University Neurofibromatosis (NF) Center, which administers the program. “She noted that a child who couldn’t balance at all on one foot was either doing so or was close to doing so by the fifth [week]. Another parent said her child’s speech pathologist noticed improvement over the time her child was in the Beat NF class.”
Trish Brennan, the mother of four year-old Connor, said the program allowed her son to practice skills that are challenging for him in the context of something he loves: music.
“He would always share the instrument that was introduced in class and an interesting fact that he learned,” she said. “I’m not even sure he realized that he was working on the gross motor skills because the activities that were planned were engaging and fun. As parents, we appreciated the observant eyes of the professionals as well as getting the opportunity to meet other families affected by NF1 [through this program].”
Brouillet added prior to the program there was no group therapy program in place to work with NF1 children at such a young age. “We hope getting started with these kids this early will significantly help to improve their gross motor skills by the time they get to school,” she said.
Dunlap adds that tweaks to the program could create broader appeal. “We feel it could be a component of many early childhood programs and help children with all kinds of developmental delays and attention deficit,” he said. “We are exploring ways that we could use this program in the St. Louis public schools and bring it into early childhood programs.”