- Associated Press - Saturday, April 9, 2016

SWANVILLE, Minn. (AP) - This town is so small that no population is listed on the sign at the city limits. But at least one of the 21 seniors in this year’s Swanville High School graduating class is doing his part to put the community on the map.

Ethan Och plans to study computer science or engineering at the University of Minnesota. He’s well prepared so far with a 4.06 grade-point average and a score of 35 on the ACT, though his biggest worry of late is coming up with a valedictory speech, the St. Cloud Times (https://on.sctimes.com/1PB9xU8 ) reported.

What makes him unique isn’t that he participates in the school band, pep band and marching band - but that he does so despite spinal muscular atrophy. With the help of his current and former music teachers, and through the use of apps for tablets and smartphones connected to amplifiers, Och can play all forms of percussion even though the strength and range of motion in his arms has been limited in recent years by a progressing genetic disorder.

Och maneuvers through the halls on a motorized wheelchair. But in the music room or on stage for a concert, he can really let loose.

“I’m not exactly sure what draws me to it so much,” Och, 18, said of music. “There are variations and combinations and a large amount of melodies you can make with different notes. There are so many different types of songs and you can take a melody that you know already and alter it. Art kind of balances out all the science and math I have.”



Och and his former music teacher, Gina Christopherson, have been recognized for their ingenuity by the National Federation of State High School Associations. Earlier this month, they were named regional recipients of the National High School Heart of the Arts award, for a territory that covered Minnesota, North and South Dakota, Nebraska, Kansas and Missouri. They finished as a close runner-up for the national honor, which went to an Alabama band that played for a rival high school football team’s playoff run because that school didn’t have a band program.

To those who’ve seen his progression, Och’s music story, which began in third grade, is just as special.

“If he wanted to participate in band, we needed the ability to make that happen just like the other kids,” said Christopherson, who left Swanville last spring after 15 years to be a portrait photographer in Alexandria. “We needed a solution.”

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Och tried the trumpet, among other instruments, but chose drumming. They got the lightest sticks they could find, first of wood and later from an aluminum alloy. But spinal muscular atrophy eventually robbed him of the dexterity to make music that way.

“Rhythms were getting too hard for me to play on a snare drum or a bass drum,” he said. “I wasn’t able to keep up, so I thought I had to quit. But then we ended up finding an answer, kind of by accident.”

As he informed Christopherson of his intent to stop, she mourned he wouldn’t be able to play music anymore. He told her not to worry, showed her a piano app on his phone - this was years before the iPad - and “Mrs. C got to thinking,” he said.

They researched adaptive technology through trial and error. They blew up several speakers before finding the right amplifier. Originally, marching band called for someone to walk alongside Ethan, pushing a baby stroller with a car battery and his amp. Eventually they were able to go wireless; all the while Och tapped out sounds on Christopherson’s iPhone strapped to his leg.

There were other lessons - like when Christopherson’s iPhone would ring over the amp. Another arrangement was so sensitive his drum would randomly crash when his wheelchair hit a bump. Christopherson also had to get permission for Och to participate from the Minnesota State High School League. Officials from other schools in competition wanted proof he was creating the sounds himself and that it wasn’t pre-recorded or auto-tuned.

“I got some other band directors really mad at me,” Christopherson said. “But how is this different than someone using an electric guitar to play jazz? When I asked that, the gentlemen I was speaking with turned a neat shade of purple.”

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When Och was in ninth grade, the school got an iPad. That gave him a new range with apps like GarageBand, Shaker!, and Cowbell Plus. As a result, Och now can play the electric marimba, tickling his fingers over a keyboard similar to a piano or xylophone. His current band director, Brandy Lyon, who studied adaptive music technology for her master’s thesis, said she’s benefited, too.

“Ethan is a lot of fun to work with and he’s got incredible problem-solving skills,” Lyon said. “He knows GarageBand better than I do and it’s amazing what you can do now. I’m really glad I get to work with him. In education, our goal is to be as inclusive and authentic as possible. I think music as a field has to be more open to things like this.”

Life for Och became more complicated in 2013, when he got a gastrostomy tube to deliver nutrition directly to his stomach. In 2014, after suffering bouts of pneumonia, he voluntarily underwent a tracheotomy to ease his breathing. Those operations left him needing a nurse most hours of the day.

Last spring, Och started a GoFundMe page to help pay for a trip to New York with the Swanville band. He raised enough for himself, but needed help to cover the cost of having two nurses - one to be with him while the other one took a shift off. The plan succeeded, with the help of the other band members - who said they weren’t going without him. The trip was a success and also garnered media attention that began to grow like wildfire. The NFHS award has just added fuel to produce more feedback.

“We’ve heard from all over the place, all six continents, basically everywhere in the world,” Christopherson said. “What was really cool is we heard about other kids. There were kids in Indiana that had SMA and they were excited because now they could be in band and do something. It was nice because they’d never thought they could do something like that.”

Och already has contacted University of Minnesota band officials and said he’s been welcomed to participate. So, if he becomes an engineer or develops the next great app, he’ll do it to his own soundtrack.

“On my Apple account, I have all genres of music - even band opera,” Och said. “I write music as a hobby. I just enjoy it. I have a feeling I’ll probably always be doing something with music.”

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Information from: St. Cloud Times, https://www.sctimes.com

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