Arts & Culture

Thank you, KC Symphony, for at last giving my special-needs son the music he deserved

Two years ago this week I had the best evening ever inside Helzberg Hall.

My son Sam and I were enjoying a Kansas City Symphony concert. At 20, it was the first time he could ever attend such an event at the Kauffman Center for the Performing Arts.

A favorite saying of mine is “music is for everyone.” That night, in that concert hall, that “everyone” was — for me — a very special someone.

Sam’s love of music was evident before his disabilities were.

My late father, once a professional trumpet player, recognized Sam’s perfect pitch when at age 3 he sang holiday carols in the car. Only a few months later, Sam’s perfect-pitch singing voice, as well as his ability to speak at all, evaporated. After months of tests and doctors’ visits, Sam was diagnosed with an epilepsy specific to the language area of the brain and placed on the autism spectrum.

Sam eventually regained limited speech, often referred to as “purposeful expressive language.” Sam couldn’t answer a question, but he could request his favorite foods.

Deb and Sam_fitted.jpeg
Sam Burnes and his mom, Debra Skodack Burnes, at a Kansas City Symphony sensory-friendly concert, his first time in Helzberg Hall. Loved ones donated money to the program in his memory. From Debra Skodack Burnes

At that time, some 18 years ago, the world was still a difficult place for someone like Sam with developmental and intellectual disabilities. There weren’t a lot of places we could all go where he wouldn’t have major sensory issues and meltdowns. Like many people with special needs, the noise and lights, the unfamiliar environments, were just too much.

While Sam’s speech shrank, his love of music did not. His favorite leisure activity always was to watch Disney music videos. And Sam could finish lyrics to many songs, like “Take Me Out to the Ballgame” or the gospel tune “Going Down to the River to Pray.”

Music was an avenue to a brain that I loved but could not always reach. Scientific research continues to support this mystery of how the brain responds to music.

Music runs in our family, and I’ve been fortunate enough to join community choirs and orchestras that were invited to perform at the Kauffman Center. Six times I have had the chance to perform in Helzberg Hall.

Sam could never come.

My husband and I knew Sam might be disruptive to others in the audience. But we found other places he could enjoy: a pool for him to swim in, our neighborhood’s streets through which he could ride his three-wheeled bike, and a grocery store where he could shop for the food he liked.

And Sam was able to attend regular choir class at Shawnee Mission North High School, where he was a special education student. While choir class allowed Sam to be submerged in live music, I still ached that he could not experience Kauffman.

And then we got the information for “Out of This World,” the first sensory-friendly concert performed by the Kansas City Symphony.

Nutcracker 2018.jpg
For the second year in a row, the Kansas City Ballet will offer a sensory-friendly performance of “The Nutcracker.” BD Pruitt Kansas City Ballet

Everyone. Everywhere.

The symphony began exploring sensory-friendly programming in 2016, a time when the concept was new nationwide. The symphony created a focus group with staff members, therapists and others. The symphony also had special allies and resources in Ho and Susan Ahn. Ho Ahn is a former symphony cellist who retired years ago to be at home more with his son, who is on the autism spectrum.

Before the first concert, he told orchestra members what to expect from the special audience and what it would mean to all of those who would be there. As with Sam, it would be the first time Ahn’s son would be at a concert in Kauffman. The sensory-friendly concerts are shorter, and the lights aren’t dimmed all the way. Patrons are free to walk around.

Noises are never discouraged.

“The sensory-friendly concerts are among my favorite programs the symphony performs,” says Jason Seber, the David T. Bealls associate conductor at the symphony, who will be leading the next such concert on Saturday. “I love seeing the joy and enthusiasm radiating from the audience. There are people tapping to the beat, singing along, conducting, dancing, and simply enjoying the music as much as we are on stage. The musicians and I really love performing for them.”

In the time since that first sensory-friendly symphony concert, more experiences have become available. The National World War I Museum and Memorial, the Kansas City Zoo, the Kansas City Royals, Kansas City Repertory Theatre, the Kansas City Ballet, movie theaters and the Nelson-Atkins Museum of Art all have developed sensory-friendly opportunities.

Clearly, I am not the only one wanting this to happen.

“It has been a dream of mine for many years since arriving in Kansas City to offer a sensory-friendly performance for our ‘Nutcracker,’” says Devon Carney, Kansas City Ballet’s artistic director.

The ballet first offered a sensory-friendly performance of “The Nutcracker” last year and will do so again this December.

“When seeing the performance last year I was overcome with a great sense of gratitude to our community for supporting this venture,” Carney says.

“And to see all the children and their families there thoroughly enjoying the experience was unbelievably thrilling. It was also very important to me that the artists of the company volunteer to come out and meet the audience members. The lobby was such a buzz of activity with so many photos being taken of children with the dancers and with families. It was a truly magical experience.”

On Oct. 1, the Kauffman Center and Variety Children’s Charity of Greater Kansas City unveiled new resources to make events there more accessible. The center now offers sensory kits, with noise-muffling headphones, a weighted lap pad that can help people feel more grounded and a handheld item that might help them remain calm. The center also created “serenity rooms,” where patrons can watch a performance in private via a monitor. See kauffmancenter.org (search for accessibility).

“The Kauffman Center for the Performing Arts is an organization with one overriding goal: to bring artists and audiences together. ALL audiences,” says Julia Irene Kauffman, who spearheaded the drive to build the center and is its chairman of the board, carrying on the philanthropic mission of her parents, Ewing and Muriel Kauffman. “My parents would be thrilled with these new additional resources enabling more of the community to enjoy these extraordinary performances.”

“A key word we often focus on is ‘everyone,’” says Paul Schofer, the center’s president and CEO, “which is why we place great emphasis on not only providing diverse programming but also ensuring that barriers are removed to experiencing the arts.”

In some cases, these are financial barriers that are addressed with free and low-cost programming, as well as providing bus transportation subsidies for students attending matinees. And then there is making Kauffman accessible to someone like my Sam with this new partnership with Variety.

“It’s an area I personally have a strong passion for based on some of my own life experiences … and an area in which professionally I believe is critical to pursue if we truly want to fulfill our vision of providing diverse and extraordinary performing arts experiences for everyone,” Schofer says.

His experience at a sensory-friendly performance was memorable.

“One child held on to the open door to the theater, peered inside, decided that was a safe and comfortable place to be, and watched the entire performance right there,” he says. “The attendees were all able to experience it in a way that was true to themselves — moving, vocalizing, coming and going — just authentically experiencing the performance.”

serenity room dr1_2940_48859968783_o.jpg
The Kauffman Center for the Performing Arts recently created “serenity rooms,” where special needs audience members can watch in private via a monitor. Kauffman Center

A special thank-you

When Sam and I were at that concert two years ago, then-symphony executive director Frank Byrne watched a part of the performance not far from us. I wondered: Could Byrne see what I saw and felt? Could he see how Sam focused on the music and how Sam’s eyes searched the walls and ceiling for the chords?

I so wanted to go over and thank him. But even that simple task was impossible with Sam, for as soon as the music stopped, the real world came roaring back. Sam needed to be guided safely back to our car in what quickly became a sensory-unfriendly world.

The thank-you would have to wait until this past January, when I was able to meet Byrne during the intermission of a symphony concert. I told him my husband and I wanted the symphony’s sensory-friendly concerts to be the way for our family and friends to remember Sam, in memoriam.

Sam died that month from what doctors identified as Sudden Unexpected Death in Epilepsy. He was 21 years old. About a week after Sam died, the Shawnee Mission North Choir Boosters contacted me, saying they wanted to donate the proceeds from a student talent show to a local charity in Sam’s name.

I knew immediately it had to be for the symphony’s sensory-friendly concerts.

The decision not only raised money, it raised awareness. Both non-musician and musician friends told me that they never had heard of sensory-friendly programming.

This month, at the symphony’s opening concert series, I traced my fingers down the lengthy list in the program of people who donated in Sam’s name. We’ve made a statement that this programming is important to our community.

A small plaque still hangs in Shawnee Mission North’s choir room. It has a picture of Sam with that favorite saying of mine, “Music is for everyone.”

It was placed there at Sam’s graduation from North in May 2016. It’s a plaque that could very well hang in the Kauffman Center as well.

Upcoming arts events

The Kansas City Symphony’s sensory-friendly “Postcards From the Americas” concert: 2 p.m. Saturday, Oct. 19, in Helzberg Hall at the Kauffman Center. Tickets are $10 through kcsymphony.org or by calling 816-471-0400.

The Nelson-Atkins Museum of Art’s Low Sensory Morning: 9 to 10:30 a.m. Nov. 16. Free. See nelson-atkins.org (click on the “upcoming events” calendar).

The Kansas City Ballet’s sensory-friendly “The Nutcracker”: 6 p.m. Dec. 18, Muriel Kauffman Theatre at the Kauffman Center. Tickets are $25 by calling 816-931-8993. See kcballet.org.

One of the best resources I could find for sensory-friendly programs is at VisitKC.com (search for “sensory friendly”).

plaque of sam.JPG
This plaque of Sam Burnes still hangs in the Shawnee Mission North choir room. Debra Skodack Burnes
Related stories from Kansas City Star

  Comments