Healing through music

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It’s a Tuesday afternoon at 12:30 pm. A mini-van pulls into the circle drive on the west side of Murphy Hall. Emerging from the side sliding door with guitar on his back is 22-year-old Joe Steffy. He races inside the building, quickly getting ahead of his parents who trail behind. Joe makes his way to the fourth floor and into room 448. This marks the start to his favorite hour of the week; this is the start of his music therapy session.
Background

For five years Joe and his parents Ray and Janet have come to the music therapy clinic inside the office of the Division of Music Education and Music Therapy. Surrounded by drums, keyboards and other instruments in the smaller of the two rooms of the clinic, Joe works with students who specialize in helping individuals overcome personal obstacles through music. The biggest obstacle for Joe is communication, a skill he lacks because of a dual diagnosis of autism and Down syndrome.

Diagnosing the problem

When Joe was six months old, he began to have seizures, sometimes 200 to 300 a day. His parents took him to Gillette Children’s Hospital in St. Paul, Minn. for treatment. Here doctors confirmed that Joe suffered from infantile spasms accompanied by hypsarrhythmia, a serious condition causing abnormal spikes in electrical activity in the brain. Out of this he developed autism. Doctors suggested a solution that did not sit well with Joe’s parents.

The doctors in St. Paul told us to just leave him here, we’ll take care of him because he will destroy your family

Ray Steffy

“The doctors in St. Paul told us to just leave him here, we’ll take care of him because he will destroy your family,” Ray Steffy said.

The Steffys did not do this. Instead they kept Joe at home and put him through public school. It was near the conclusion of his education that again Joe would be judged.

“A transition plan is put in place by the educational system to help from school age into adulthood. They said Joe had no attention span and would live in a group home the rest of his life,” Ray said. “This kind of ticked me off. So we decided to prove to them that Joe had a working capacity and could hold his attention span.”

Maize Magic

The answer to how to prove critics wrong came while the Steffys were in Alaska on vacation. Ray witnessed people lining up a for a city block to buy kettle corn at a vendor’s stand. After researching and purchasing the necessary equipment, Poppin’ Joe’s Kettle Korn was founded In October 2000.

“Within a year and a half Joe could do anything in the [popping] process. It proved to us that he could go out and stay on task for five to six hours,” Ray said.

The biggest milestone for the Steffys came in April 2005. With the help of Partners in Policymaking, an advocacy training program associated with the Kansas Council on Developmental Disabilities, Ray and Janet were able to transfer ownership of the business to Joe. The change proved his detractors wrong and also insured a bright future for him.

Music therapy helping business

Along with owning the business came more expectations for Joe. Robin Williams, a graduate music therapy student who has coordinated Joe’s treatment for two years, explains some of the new challenges he had to face. “When he works the business he has to interact with people. He has a really hard time speaking and that’s something that’s very typical in individuals with Down Syndrome,” Williams said.

To help overcome this, Williams began by using very simple methods to make progress one step at a time. “Just getting him to sing along and vocalize was one of the goals. So we worked on all the different sounds and that proceeded into different syllables and different words,” Williams said.

One of the biggest and most pertinent accomplishments for Joe came last year while he worked his kettle corn stand. After working at music therapy sessions on the phrase “Would you like to try some kettle corn?” Joe successfully asked a passerby, who politely declined. It didn’t matter the man refused, for Janet and Ray it was an enormous achievement and proved that music therapy was working for their son. “I about jumped out of my skin. I looked at Ray and he looked at me. We both heard it and it’s the first time ever that we saw Joe say something to a stranger and the stranger replied to him,” Janet said.

Current and future goals

For the Spring 2008 semester, the goal of improving Joe’s speech has remained the same. Of particular focus has been articulating words ending with the letters “s” and “t”.

“When he talks we get the middle of the word, but we don’t get the beginning and ending sounds. So they’ve worked very hard on the beginning and ending sounds. Because of this he is becoming more intelligible,” Janet said.

To help with this problem, Joe’s therapist Lisa Skarbakka has him rub sandpaper together to make a sound like the letter “s.” Then she taps a wooden block to emphasize the “t.”

The Steffys are very proud of all the accomplishments Joe has had. The hope for the future is that he will be able to put more full sentences together, and continue to successfully interact with people. However, as Janet says, one of the biggest goals has already been met, one far bigger than communicating.

“It’s about him having a quality of life, and music therapy has helped him achieve this.”