Gettin' Down

Click the picture to view the .pdf verson of the Heartland article that appeared March 2, 2007
in the State Jounral Register. (reprinted with permission 3/06/07)

Story by Dan Naumovich / Photographs by Lane Christiansen

In a 2005 address to two national Down syndrome organizations, Dr. Dennis McGuire of Lutheran General Hospital in Park Ridge painted a picture of “what a rich and interesting world” it would be if people with Down syndrome were in charge. Among other things, pretentiousness and procrastination would be out; hugging and honesty would be in. And people would get married more often. That last point may seem a bit odd to you, but it makes perfect sense to Sande Hilst. “Wedding receptions are Michael’s favorite thing to do,” she says. “All the girls love to dance with him.” Michael is her son. He is 22 years old and has
Down syndrome. Michael loves to dance, and now he doesn’t have to wait for someone he knows to tie the knot before he can cut a rug. Michael’s not as busy now that he’s out of school, but his mom makes sure he stays engaged. One of his former teachers, now retired, comes by to tutor him a couple of afternoons each week. On Thursday and Friday afternoons he goes to work at McDonald’s, a job that he loves. And then on Friday evenings, even if he’s a bit worn out from wiping down tables and picking up trays, Michael heads to dance class. “No matter how tired he is, he always gets fired up when it’s time to go to class,” Sande Hilst says. There’s a book sitting on the counter of the Turnout Movement Arts Studio in the Laketown Shopping Center that contains a quote by humorist Dave Barry: “Nobody cares if you can’t dance well. Just get up and dance.” Those are encouraging words for bashful dance students. Michael and the seven other students who gather at the studio on Friday evenings, however, are not the least bit self-conscious about moving out onto the dance floor. The class, which began this year, is
called Getting Down. It was developed by the studio’s director, Tracey Sims, for people with Down syndrome. According
to the research manager of the National Down Syndrome Society, it is believed to be one of a few in the United States.
 

IT’S FRIDAY EVENING, Feb. 2. The groundhog is back in the warmth of his lair, and seven young dancers, all from the Springfield area, brave singledigit temperatures for the chance to get down.  Rachal Wyman comes into the Turnout studio in the arms of her dad. The frigid night air has rouged her cheeks a rosy hue that almost matches her pink sweat suit and the plaid kerchief that’s tied around her head. “I’ll tell you, Rachal just loves to dance.  She talks about coming to class every day,”
says Matt Wyman of his 4-year-old daughter.  When her dad sets Rachal down, Sims — or Miss Tracey, as her students know her — is waiting to give her a hug. It is the first of countless embraces that will be exchanged before the evening is through.
Miss Tracey has divided the Friday night class into two sessions by age so that she can better accommodate her students’ abilities and give more individualized attention. Her teaching assistants tonight are sisters Rachal and Desiree Wolfe. Rachal, 15, is a student at Taylorville High School and Desiree, 19, returns home from Bradley University a few times a week to assist at the studio. 

DOWN SYNDROME is a chromosomal disorder that affects more than 350,000 Americans. It often is characterized by impairments in cognitive ability and motor skills. Experts are starting to see that the physical and mental aspects of dance offer great therapeutic benefits to people with Down syndrome and other developmental disabilities. It’s common to think of dance as a purely emotional response to hearing music. To appreciate how dance requires the body and mind to interact, and
why the parents of these students are so excited about this opportunity for their children, it’s helpful to learn how Sims came to offer the class.  Sims, 28, is a student at the University of Illinois at Springfield, where she is pursuing a master’s degree in movement and dance therapy. This therapy emphasizes the use of movement to advance the emotional, social, cognitive and physical integration of an individual. Among its goals are an increased ability to express emotions and overcome inhibitions, the willingness to take risks and a more attuned awareness of movement potential. “The basic premise underlying dance therapy is
that the body and mind are inseparable,” Sims explains.

JOINING RACHAL WYMAN in the younger group are Maria Enlow’s son, Lucas, 7; Rileigh Schnepp, 6; and Ally Kauerauf, 8. Ally has special needs, but is the only one in the class that doesn’t have Down syndrome.  “We love it,” says Don Kauerauf, Ally’s dad. “It’s the only opportunity we’ve found for Ally where she can do activities with kids that have similar abilities.” As the music starts, a calypso beat drifts across the room and the teachers begin to churn their arms as if swimming across the hardwood floor. The teachers offer a steady flow of encouragement. The students aren’t immediately engaged, but you can see the music begin to soak in as they carefully move their bodies. “Down syndrome children have less muscle tone,” Matt Wyman says. “It’s harder for them to do a lot of things, but the dance really helps out.” Miss Tracey asks that the parents remain in the waiting area during class, so most of them haven’t observed what goes on in class. “We don’t get to see a lot of what he does here,” Enlow says about her son Lucas, “but when he gets home he’ll say, ‘Mom, watch!,’ and then do some move he learned. It’s carrying over, which is exciting.” Tonight the parents have found a glasspaneled door that connects from an adjoining room. Although they’re told that the glass is a one-way mirror and their kids can’t see them, that assurance is shattered when Rileigh waves to her dad and starts to walk over to him. Everyone moves away from the door and out of sight. Inside the dance room, Miss Tracey has handed out foam balls for the students to dance with. Sensory stimulation activities that involve tactile objects are said to be useful in developing fine motor movement. Lucas, the only boy in the room, finds them useful for throwing. Lucas also seems quite fond of the fulllength mirror that covers the south wall of the dance room. “Yeah, Lucas loves the mirror,” Enlow says. “He’s the most handsome guy he knows.”

DANCE THERAPY can be effective for anyone, but people with developmental disabilities are especially receptive to its benefits. After completing a school assignment that required her to develop a dance class to coincide with Disabilities Awareness Month last October, Sims decided that she wanted to offer similar classes at her studio. She worked with Karla Carwile, the director of the Office of Disability Services at UIS, to develop a class. Carwile encouraged her to focus on a specific population of individuals with disabilities so she could focus on their specific needs. “While (Sims) had a genuine interest in
all forms of adaptive dance, helping children with Down syndrome resonated within her,” Carwile said. The reason for that special interest is Michael Hilst. Sims came to know him when she started dating his brother, Matthew. “She’d come to the house and take him for ice cream,” Sande Hilst recalls. “She likes to be with him.”

WHEN THE CLASS ends, it’s hugs all around with more to come when the students greet their parents in the waiting area. Lucas sees Alex Lucore, a friend from school who is waiting for the second class to start. They hug no fewer than five times before Alex, 12, goes into the dance room. The older students in the second session are getting loose with a warm-up exercise similar to Simon Says. Sitting in a circle with the teachers are Michael, Alex and Shelbie Nevill, 10. Miss Tracey calls out moves: Hands out! Hands in! Legs up! Hug! She wraps her arms around herself and the students follow suit. The exercise continues and the students get a turn to suggest a move. Michael lies on his side and comfortably strikes a somewhat contorted heel-on-toe pose. Extremely limber joints are a common characteristic of Down syndrome, and the teachers have a difficult time twisting their bodies to match Michael’s pose. Miss Tracey turns on the music. She and her assistants lead the students through various movements in rhythm to a bluesy beat.

They’re shimmying, marching, gliding and even playing a little air guitar. Mirroring is a big part of the development process, but
self-expression also is important. “In class, I encourage the students to create their own moves,” Miss Tracey says. “There’s nothing more rewarding than watching them craft a movement that comes from how they are feeling at that very moment.” Right now, Shelbie feels like taking a seat. It doesn’t take long, however, for Miss Rachal to coax her back. It’s time for the students’ big number, the routine they are set to perform at a production at Glenwood High School this spring.

SIMS REMEMBERED that Hilst once told her how excited Michael was when he got to participate in his high school play, but now that he was finished with school there weren’t any opportunities for that type of activity. She soon would learn that this was a common complaint from parents of children with Down syndrome. After developing the fundamentals of the class, Sims contacted Maria Enlow, Lucas’ mother — who is associated with the Lincoln Land Down Syndrome Society — to find prospective dancers. She explained what she had planned and how it could benefit the students, but also admitted they would be forging some new ground. “She was very open from the start,” Enlow says of her initial contact with Sims. “She said ‘I don’t know what will come of it, but if you work with me, we’ll do it.’ ”

CHILDREN WITH DOWN SYNDROME tend to have strong visual memory, a strength that lends itself to learning dance routines. The class sits in a circle while Miss Tracey runs through the moves that comprise their routine. She then turns on the music. “You know you make me want to,” Otis Day belts out the opening line to “Shout.” The students all take their spots. It’s time to kick their heels back. The students work their way through the choreographed moves, occasionally looking at the teachers for direction. You can see the wheels turning in their minds, planning how they’re going to move their body next. Earlier, Paula Lucore had described why dance is so beneficial to children with Down syndrome. “It’s great motor planning, it’s great sequencing and it’s great for following directions,” she says. It’s also great for letting Alex be Alex. When the song breaks down (Yeah-yeah, Yeah-yeah) everyone kneels in a circle, while Alex stands in the middle, lip-synching the lyrics into an imaginary microphone. He’s a natural showman, and he and the rest of the class are sure to put on a show-stopping performance when they take the stage in Chatham this spring. While Michael is out on the dance floor with his friends, Sande Hilst recalls a story she says always brings tears to her eyes. Titled “Welcome to Holland,” it describes what it is like to be the parent of a child with special needs. The story is paraphrased here: Imagine that preparing to have a child is like planning a trip to Italy. You pore over guidebooks, select the sites you want to visit, maybe even learn a little Italian. When the big day arrives and your plane finally touches down, however, the pilot tells you that you’re in Holland, and that’s where you’ll have to stay. Your dream of going to Italy is shattered. Everything you prepared for is for naught. But if you allow yourself, you’ll soon realize that Holland also is
a beautiful country, possessed by its own unique charm. Things do move a little slower, the style is a little less glitzy. But you’ll
begin to experience things that you could never experience anywhere else. You may always wonder what it would be like if you
had made it to Italy; just don’t let yourself miss out on all of the great things about Holland.  When class is over and everyone heads back out into the cold to make their way home, one thought comes to mind — those Dutch sure love to dance.
 

Dan Naumovich is a freelance writer and the author of BlogFreeSpringfield. He can be reached at dan@naumo.com.