Music-Motor Therapy Program Improving the Lives of Toddlers with NF1
Working on motor skills during a Spring Beat NF class with St. Louis Children’s Hospital Physical Therapist, Courtney Dunn, PT, DPT.
The Washington University NF Center and Jazz St. Louis recently wrapped up another successful Beat NF session. This unique music-motor therapy program utilizes jazz music and motor therapy to help the NF1 preschool population overcome developmental delays commonly seen in this genetic condition. Earlier this summer, twelve toddlers with NF1 attended weekly classes in St. Louis’ Grand Center at The Harold and Dorothy Steward Center for Jazz. To increase jazz music knowledge and awareness, local jazz musicians played live music throughout each 75-minute class while the children engaged in a variety of gross and fine motor movement activities.
After 5 weeks of attending class and working on motor skills at home through weekly homework assignments, many parents reported a greater appreciation for jazz music and improvements in their child’s jumping and balancing skills. Rae Gilliam, mother to Caroline (a Beat NF program participant), shared with us her journey from receiving Caroline’s diagnosis to attending Beat NF, where she and Caroline found comfort in a supportive environment geared toward growth.
Rae Gilliam with daughter Caroline at Beat NF.
“I will never forget the comfort I received during our first visit to the NF Clinic when Dr. Gutmann told me that the Washington University NF Center would adopt our family as we learned of our daughter’s diagnosis. That statement was projected by every staff member’s approach during the rest of our visit. I was nervous, but so grateful to be invited to the Beat NF jazz music-motor therapy program. The whole process of filling out extensive medical history, working through the personal evaluation, and receiving the initial diagnosis can be overwhelming. Not only did our interaction with the Beat NF staff build morale and help comfort our fears of the unknown, there was overwhelming support from fellow families facing similar genetic delays. As a parent, you want the best for your child. At Beat NF, I find solace in seeing that others do, too.
During a typical Beat NF class, our daughter gets the full gamete of developmental support. Jazz music education, physical therapy, social skill development and speech therapy all woven together during the 75 minute class. Songs are built upon and added weekly, so children can master the lyrics and motor movements. While we enjoy jazz, our affection for the music therapy has incited a cross-sectional appreciation for the benefits of music-based physical therapy. We wish we could attend sessions year round!”
Interested in joining us for the fall Beat NF session? Reserve your child’s spot today by emailing the program coordinator, Kirsten Brouillet.
YOU’RE INVITED: Spring 2016 Beat NF
Join us for a one-of-a-kind jazz music experience, seamlessly integrated with gross motor and social skill activities. Beat NF, a jazz music-motor therapy program for toddlers and young children (ages 2 – 5 years) with NF1, was developed by a team of St. Louis Children’s Hospital therapists and Jazz St. Louis musicians. Each class focuses on improving gross motor skills often delayed in children with NF1, while also offering a platform to progress language, social and behavioral skills in preparation for kindergarten.
During each class, the children participate in carefully planned activities that aid in further development of the following skills:
Strength, balance and coordination of all muscle groups, under the supervision of a physical therapist
Expressive and receptive language skills to improve communication
Social confidence to encourage group play, taking turns, using manners and building friendships
Exposure to live jazz music and history including learning about famous jazz musicians and the instruments they mastered
Courtney Dunn, PT, DPT, a St. Louis Children’s Hospital physical therapist, will work directly with both parents and children to help facilitate the motor goals of this curriculum-based, enrichment program.
To learn more about how this program can benefit your child and to register for upcoming sessions, please visit our events page.
Beat NF Program Highlighted in JazzTimes
This article, written by Jeff Tamarkin, originally appeared in JazzTimes on March 24, 2016.
The sight of a group of children dancing happily to live music never gets old. And when those kids have been diagnosed with a genetic disorder called neurofibromatosis type 1 (NF1), and exposure to jazz has proven to have a positive factor in their therapy, the joy factor skyrockets. NF1, which can cause a litany of problems, affects one in 2,500 to 3,000 people of all ages—it’s more common than muscular dystrophy. In young children, it can lead to numerous medical, motor and learning issues, as well as problems with socialization. Traditional therapies can help, but for many kids, they’re not enough.
That’s where Dr. David Gutmann comes in. A professor of neurology and director of the Washington University Neurofibromatosis (NF) Center in St. Louis, Mo., Dr. Gutmann and his team, in tandem with St. Louis Children’s Hospital and Jazz St. Louis, two years ago created Beat NF, a therapy program that uses live jazz to treat toddlers with NF1, for which there is no known cure as yet.
“We noticed that kids that have NF1 require a multidisciplinary approach,” he says, “and we needed to bring a number of different ideas and approaches to bear. The reason that we decided to use jazz is that the beat established in jazz provides a framework for us to begin to address movement and timing and attention, things that are really problematic for these young kids. The live interaction helps them make connections. It provides visual cues and a more interactive experience.”
Why jazz? “Jazz and medicine share a bunch of common principles,” Dr. Gutmann says. “One is improvisation and the other is collaboration. What we do all the time with our kids, particularly our young kids, is try to solve medical problems with information and tools that are immediately at hand, as you try to do when you’re onstage improvising. We don’t always have all the information. We don’t always have the most advanced tools at any one time. We have what we have and we apply that to the situations that we’re dealing with.”
The toddlers, of course, do not know they are hearing jazz played by area pro musicians. For them it’s just fun to respond to music, which is always performed live, never in recorded form. But for many of the children, it’s their first exposure to live music of any kind, and thus the therapeutic process also becomes a teaching moment. They even get to join in. “They’re mesmerized,” says Dr. Gutmann. “And the inclusion of [specialized educational] instruments, where you actually can’t play a wrong note, allows them to become further engaged. It’s the same sort of feedback that we get in a live jazz concert. You get to see how the music is made, how the fingering of the piano actually produces music, what’s happening with the innards of the piano. The kids are fascinated by that.”
Dr. Gutmann says that the program, which uses “kid-friendly jazz, nothing too extreme,” has produced measurable results. “The more you activate parts of the brain, the more the kids become functional and new connections are made. It could be healing in that respect.” Jazz, with its pronounced rhythms, seems to have a more noticeable effect than other genres of music. “We can vary the music in terms of speed and tailor it to just the right challenge for these kids,” he says.
He hopes to expand the program within St. Louis at first, but eventually it could be used in other locations, and could possibly be applied to other conditions, including cerebral palsy and autism.
View additional JazzTimes articles at jazztimes.com. To view upcoming Beat NF sessions for your toddler with NF1, please visit our upcoming events calendar.
YOU’RE INVITED: Club NF Cooks
On Saturday, February 27, from 9:30 a.m. – noon, Club NF is heading into the kitchen at Schnucks Cooks Cooking School in Des Peres, MO. Children will work on a variety of fine motor and social skills in the kitchen while Courtney Metzinger, OTD, MFA, OTR/L will give a one hour talk to parents about encouraging executive function and self-management skill development in children with NF1. There are only a few spots remaining for this popular event, so if you haven’t signed up yet, please do so soon!
Cooking is an important life skill that children can begin to work on at various stages during childhood. In the earlier years, skills worked on can include measuring spices from a jar and pouring a cup of milk into a bowl. Eventually, skill level can increase to chopping and stove top food preparation. While having fun, children will begin to feel like they are contributing to a family meal. By working in groups, children are confronted with social situations that must be mastered by adulthood; taking turns, sharing, communicating, and planning and executive functioning skills. These skills will also help children develop other important skills such as tying their shoes (fine motor), planning and completing a school project (executive function) and communicating with peers and adults (speech and social skills).
For more information about Club NF events or to register for this upcoming event, please contact Kirsten Brouillet at brouilletk@neuro.wustl.edu
Club NF is the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8th grade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all of our families. Made possible by generous funding from the St. Louis Children’s Hospital Foundation, Club NF is a hallmark of the NF Center complementary care programs.
Patient Spotlight: Garrett’s NF1
Garrett assisting another child with NF1 at the Club NF ice skating event
Our son Garrett was diagnosed with Neurofibromatosis type 1 (NF1) when he was just 5 years old. We had never heard of this disorder before, and our family was devastated. As parents, we tend to have certain dreams and expectations for our children’s lives no matter how realistic or unrealistic they may be. As I started to research this condition, I became even more scared and confused; it’s so complex and every person can be affected in such different ways.
We connected with the Washington University NF Center Clinical Program at St. Louis Children’s Hospital within a couple of months of receiving the diagnosis. Dr. Gutmann and every member of the staff there have been so kind, helpful and supportive. Our perspective began to change immediately.
We began attending the Club NF play-based therapy events, and Garrett and I have both enjoyed them so much that we try to make it to all six events throughout the year. These events are just one example of how Dr. Gutmann and his team have been so inspirational in our journey, always focused on what truly matters for our life, health and the well-being for all members of our family. Garrett has struggled with learning, balance, handwriting, speech and social skills, but he loves working on skills that are difficult for him and seeing the “NF family” at these events. He fits in there, and he has overcome many of the issues that have arisen as a result of his NF1. He struggled for years to learn how to ice skate for his love of hockey. I’m still not sure how he did it, but he plays ice hockey and loves it! He also has worked very hard in speech therapy and has discovered a love of the stage. He has performed in several small theatre productions at his school, even landing the lead role in last year’s performance of “Murder’s in the Heir”. He did a wonderful job! This year, as a freshman in high school, he is participating in the Speech and Acting club and is competing in meets all over the region. He has a terrific sense of humor, and the irony of participating in this club having been a kid who was in speech therapy most of his life has not gotten past him; go figure!
We can’t express how much gratitude we have for the Washington University NF Center Clinical Program at St. Louis Children’s Hospital and their complementary care programs for continued support in a variety of challenging situations. We are so very blessed and fortunate to be in this place. They have helped us look at all of our possibilities, and I can’t wait to see what tomorrow brings.
– Written by Peggy Dohlke, proud mother of Garrett Dohlke
Wrapping Up Another Successful Beat NF Session!
Harold and Dorothy Steward Center for Jazz
The fall Beat NF session wrapped up this past Wednesday with our toddler participants, both new and seasoned veterans to the program, enjoying five weeks of play-based motor-music therapy in the Centene Education Center classroom on the top floor of the Harold and Dorothy Steward Center for Jazz.
A typical Beat NF class begins with the children picking a spot in a circle while Skyler Brussee, Master of Music Therapy Program at Maryville University Student, starts the class by leading our “Hello Song,” one of the many program elements focusing on development of appropriate social skills. During this song, the group welcomes our friends and leaders: Pops on the piano, St. Louis Children’s Hospital Physical Therapists Courtney Dunn and Sarah Hickey, and our mystery musical guest (a local musician who accompanies the piano). Throughout a series of songs and carefully planned fine and gross motor activities, our team then leads the children on a journey of play, planned social interactions, motor therapy work and music education.
The therapeutic goals of the program are so carefully woven throughout each 75 minute class that the children are all smiles even when being challenged and pushed to their limits by the physical therapists. When St. Louis Children’s Hospital Physical Therapist Courtney Dunn, PT, DPT asks a participant to walk across a balance beam on tip toes, it might be more difficult for a child with NF1 for a variety of reasons, including decreased muscle tone throughout the body, balance issues or a bone abnormality within the leg. Each child with NF1 presents their own expression of this genetic disorder, and each child has his or her own set of struggles. By integrating therapeutic goals into a new song or game and frequently redirecting the class to focus on new activities, the kids stay focused and engaged.
Resting after the musical thunderstorm
The children also learn about a variety of musical instruments, getting the chance to pluck an upright bass string, push the valves of a trumpet and bang on a drum. During our last class, Skyler led the children in creating a musical thunderstorm, producing the sounds of howling wind, pounding rain and blasts of thunder on their own individual drums.
No one ever leaves a Beat NF class without a smile on their face. That’s the common feature we all share on our way out the door after each class. Every activity is thoughtfully woven into a song, and every song is fun and catchy, easy to learn but updated for each class by switching out various motor movements.
Our long-term plan is to grow this program by adding new activities, songs, instruments and friends! Please join us for our Spring 2016 Beat NF session (specific dates in March-April 2016 to be determined). To learn more about Beat NF, check out our informational video introduction to the program.
– Written by Kirsten Brouillet, Team NF Coordinator
Beat NF is a play-based, motor-music therapy program for toddlers with NF1. NF1 is a set of complex genetic disorders that affects almost every organ system, causing a predisposition for tumors to grow on nerves in the brain and throughout the body. Kirsten Brouillet is the Team NF Coordinator at the Washington University Neurofibromatosis Center and has been involved with Beat NF since its inception in 2013. Contact Kirsten at brouilletk@neuro.wustl.edu for more information about this and other Washington University NF Center complementary care programs.
YOU’RE INVITED: Club NF Acts!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming April 2015 Club NF event – Club NF Acts!
Please join us at Parkway South High School in Manchester, MO on Saturday, April 4 from 9:30 a.m. – noon for an exciting morning of musical theatre. During this event, each child will have an opportunity to work with two teaching artists from COCA, The Center of Creative Arts. Groups will take turns learning a musical number from a Broadway show and participating in a short scene.
To learn more, check out our flyer, or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu. Be sure to RSVP by Tuesday, March 31 to save your spot!
The Washington University NF Center, partnering with the St. Louis Children’s Hospital Foundation, is proud to provide Club NF — a FREE, bi-monthly, play-based therapy program for children with NF1 in kindergarten – 8th grade. Our St. Louis Children’s Hospital therapists directly interact with the children and use everyday activities to work on skills often delayed in children with NF1. From swimming (motor skills) to theatre (attention skills), Club NF is designed to give children with NF1 the tools they need to be successful.
YOU’RE INVITED: Club NF Goes Surfing!
The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is pleased to announce our first 2015 Club NF event – Club NF Goes Surfing! Please join us at Core 3 Fitness Studio in Brentwood, MO on Saturday, February 7 from 10 a.m. – noon for an exciting morning of indoor surfing and yoga.
During this event, we will work on our core strength and balance skills using SURFSET boards, which are stationary surfboards utilized for strengthening and stability exercises.
To learn more, check out our flyer or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu. Be sure to RSVP by Thursday, February 5 to save your spot at this upcoming event!
Fall 2014 Beat NF Program Another Success!
We had our last session of the fall 2014 Beat NF program yesterday, and I already know I will miss my five little friends next Wednesday morning. Beat NF, a jazz, music therapy program for toddlers with NF Type 1, concluded this morning after six successful weeks. Through the collaborative efforts of Jazz St. Louis, the Washington University Neurofibromatosis (NF) Center, and St. Louis Children’s Hospital (SLCH), a unique play-based therapy group for toddlers has been born. I have worked side by side with our SLCH therapist, Courtney Dunn, PT, DPT, and musicians from Jazz St. Louis and I am amazed at the way we have all evolved both individually and as a group.
A typical Beat NF class is 75 minutes long. We begin with a Hello Song where we greet each friend individually. “Hello Kirsten, how are you today? Hello Kirsten, we sure hope you stay!” Our goal during each class is to assess and help improve the motor skills, balance and coordination of each child. For instance, balancing on one leg or marching while clapping. Another goal has been to work on social skills; look people in the eye when you “shake a hand” or introducing your friend with a clear, confident voice. Some of these skills were easy from week one or two (shake your maracas way up high). Some of these skills have taken weeks to develop (introducing your friend by name was something we worked on during the last session). Because each week builds on the last (with four repeated songs that have new motor challenges), the children could grow in confidence as they mastered a new skill or learned the words to a song. What a success for all involved!
You might be wondering how motor therapy and jazz music are connected. Jazz music has evolved over many decades citing many different influences, such as blues and ragtime. Jazz music involves a complex blend of syncopation (different rhythms working together) and improvisation (creating music without preparation). We have carefully constructed each set of motor activities to build on the previous week and to help strengthen each individual child’s balance, motor and coordination skills. While we have carefully planned our weekly motor goals, jazz music has allowed each child to improvise, create and explore in a small, safe setting. By the third week, our kids were really proud to show us their skills while working side by side with their peers (who are now friends). It has been a very organic process; the music and the motor work syncing together. Each week we enjoyed a visit from a new jazz artist with a new instrument (along with the consistency of Phil Dunlap of Jazz St. Louis and his piano) which was exciting for all involved. Our visitor answered questions and even let the kids touch their instruments!
Several families have shared with us how their child is responding to these weekly classes. One parent said the she loves talking to her child in the evening “about what he did and the instruments he got to play”. Another mother shared that her child’s speech therapist noticed a marked improvement in her child’s motor skills after only three weeks of Beat NF. Courtney Dunn, physical therapist, personally worked with each child during the six weeks, and was able to track and measure motor improvements during this session. According to Dunn, “The joy of Beat NF is watching the children develop their gross motor skills while being involved in other activities which push them to a new level that they might not reach during a typical physical therapy session.”
I believe I can speak on behalf of all of my partners in the creation of Beat NF that we can’t wait for the spring 2015 session. We will make adjustments that we feel are necessary and will arrive in the spring with an even more clear direction about the future goals of Beat NF. The children who joined us this fall were happy and excited to spend 75 minutes with us each Wednesday and I simply can’t wait to do it again next year.
Written by guest blogger, Kirsten Brouillet, Team NF Coordinator.
Back to School: Communicating with Your School
The 2014 – 2015 school year is upon us!
NF1 is the most common disorder you’ve probably never heard of–that is what we tell people the first time they learn about NF1. Because NF1 is not a commonly known disorder, it is likely that the teachers and school administrators at your school also have not heard about it. In these cases, it can be challenging for both parents and children to receive the supports they need in order to make the school year run smoothly. Here are some tips on how to communicate effectively with your school in order to help your child have a successful year.
Educate
The more you can educate teachers and administrators about what NF1 is, the better equipped they will be to handle any issues your child may encounter. We provide a range of educational brochures covering features of NF1 from birth through adulthood. We highly recommend that families share these pamphlets with their teachers and administrators as a way to introduce them to NF1. Feel free to download and print them out or to email them.
Know Your Rights
The public school system is required to provide developmental screening to any family who requests it. Developmental screening is necessary if you want your child to receive services such as speech therapy or preferential seating in the school setting. Sometimes the school will say a child does not qualify for therapy services because the screen conducted did not reveal any significant delays. In the event that your school says your child does not qualify for services, you have the right to file a formal complaint with the Missouri Department of Special Education (phone number 573.751.4212) to pursue further testing. To learn more, please read our handout.
Know Your Goals
Take time to work with your child and his or her teachers and administrators to make it clear what your goals for your child are. Having clear goals will help educators guide your child throughout the year. In the case that your child has an Individualized Education Plan (IEP), your child’s team should schedule regular meetings to ensure that goals are being set and met on a regular basis.
This article, written by Jeff Tamarkin, originally appeared in 
