Myocamp: Shriners' Popular Outdoor Adventure Is Occupation At Its Best

By Claudia Stahl

It is a sunny but chilly August morning in Perkasie, PA. At 7 a.m., the cabins at "Myocamp" are just beginning to show signs of life.

For the second consecutive year, staff members from Shriners Hospitals for Children, Philadelphia, along with eight children with upper-limb deficiencies and their parents, have ventured off to Nockamixon State Park for a fun, occupation-based experience. All of the activities during this week of Aug.14-21 have a therapeutic component, but they feel more like fun than therapy--most of the time.

"We held Myocamp for 10 years (at Shriners), but the kids would say, 'we're not sick; why are we going to the hospital?'" said Sue Ellen Harrington, OTR/L "This is a natural environment where the children can engage in natural activities and be around peers who are just like them."

Adults do the cooking on most days, but today the campers will make breakfast. First, Natalie Thatcher, 8, and Shannon Williams, 7, assisted by Carl Rebuck, a certified orthotist and Shriners' director of orthotics and prosthetics, hoist the Myocamp flag outside the main cabin. That may not seem like a great achievement unless you notice that each child has a prosthetic arm. In fact, all of the campers are learning to use their new myoelectric prostheses.

Dressed in bright summer whites, greens, pinks and oranges, the campers gather on the front porch where Harrington briefs them about making pancakes. They line up in front of the breakfast table where they will use their myo hands to measure the ingredients, mix the batter and pour it onto the griddle.

Harrington and Mary Gavacs, MEd, OTR, assist the children and evaluate their grip, stability, flexion and rotation. Gavacs traveled to Nockamixon from the Shriners Hospital unit in Erie, PA, in hope of starting a similar program back at home.

The children use a manual beater, counting aloud, "one, two, three, four..." as they mix the ingredients. Ben Peterson, 7 , pours his batter on the grill, then steps out of line to give Rebuck a "high myo." Diane Peterson said her son has been good natured about being the only boy in the group, "though it can be a little rough at times."

Just Like Me

Myocamp is a bonding experience. Each parent tells a similar story about the first night at Nockamixon. "Everyone was having dinner, and Natalie looked around and whispered, 'Mom, this is great. These kids are all like me,'" recalled Melanie Thatcher, who traveled from Alexandria, VA, to attend the camp with her daughter.

The campers have used cable (or body-powered) prostheses for most of their lives. But the myoelectric arms, which the children received on the first day of camp, require new skills. They must learn to isolate and independently contract the muscles that control the arms and change their motor planning

Patience and persistence are probably the most difficult lessons for these children, all of whom function comfortably even when they are not wearing their prostheses. Mastering the myoelectric arm takes discipline and patience, and the first few days are frustrating for many campers and their parents. Natalie, for instance, having outgrown her body-powered arm, has functioned without a prosthesis since last March. Adjusting to the new artificial limb on the first day was a struggle. "She blamed herself for not being able to use her new arm and wanted to go home," said Melanie Thatcher. "The next day, the staff used biofeedback to train Natalie to use the muscles in her arm that operate the prosthesis. The visual input did the trick."

As Natalie's mom talked, Tim Smith lowered the seat on Natalie's bike. Tim's daughter, Shakina, was delighted when he told her two weeks ago that she was getting a new arm. Back home in Rochester, NY, the active 8-year-old rides a bike and plays sports with her brothers. "'Can't' is not a word in Shakina's vocabulary," her dad says.

On the playground today, Shakina's confidence is more fragile. Attempting to crawl atop the lateral monkey bars, Shakina, unsure of her grip with her myoelectric hand, recoils after crawling a few rungs out. Nick, a social worker from Shriners, and other supervising adults verbally direct Shakina backwards to the jungle gym platform. 

It's a frustrating moment for self-assured Shakina, who fights tears while Harrington commends her for trying. Moments later, Shakina joins the other children on the sliding board and leads them to other playground obstacles.

Breanna Mossbrook, 8, who is learning to sail back at home in Stone Harbor, NJ, crawls the full length of the monkey bars. She is the only child who had some prior experience using a myoelectric arm. Her father, Edward, said Breanna has made little use of her myo arm, which she has had for three years. "The games and positive re-enforcement here have enhanced the likelihood of Breanna using her arm," he said.

When it comes to activities, Myocamp looks no different from any other. Campers go swimming in the lake and a pool, take hikes, keep journals and sing songs around the campfire. For the most part, campers are on the go from the moment they awake until they bunk down for the evening.

Whether the children are stringing macaroni necklaces, making placemats, or riding bikes, Gavacs, Harrington and other members of the Shriners team are evaluating the boys' and girls' use of their myoelectric arms. After lunch, the recreational therapist, CO, and social worker meet for an integrated evaluation that does not break down goals by discipline. Harrington said there are still some kinks to be worked out, "but for the most part, the evaluations work because they allow each professional to address the whole needs of the child."

By the fourth day of camp most of the parents are feeling the physical toll of sleeping in bunk beds, housekeeping, preparing meals, and cleaning up after activities--not to mention being "kids" themselves, again. Beverly Galligan of Fredericksburg, VA, said earlier in the week the parents hid teddy bears, donated by Shriners, in the woods while therapists led the campers in a scavenger hunt.

The children returned from their first adventure to embark on a "bear hunt." Grasping homemade binoculars with their myo hands, the campers ventured out to claim their bears, each clothed in a unique outfit.

Relishing a moment of rest inside the cabin, Beverly tells her daughter, Meghan, to get ready for afternoon swim. On an end table beside the couch, a set of batteries charges for another child's prosthesis. Beverly says a battery typically lasts Meghan from morning until early afternoon, depending on how active she is.

At that moment, Meghan bursts into the room wearing a pink and white bathing suit that is on backwards. When Meghan returns, suit adjusted, she begins picking up objects with her toes, a habit that began at age 3. Beverly had to have a talk with her daughter about "toe political correctness" once Meghan started school; she took off her shoes to turn the pages of her books.

Whole Children

The children do not wear their myoelectric arms for afternoon swim; the arms cannot get wet. They are not as durable as the body-powered arms, so professionals recommend that the children save their myo arms for school and social occasions.

Although the children are comfortable with their body-powered prostheses, which use a hook for grasp, the myo arms are more cosmetically pleasing and look similar to real limbs and hands.

But self-esteem issues surface now and then. Campers address their body images and their feelings toward their prostheses in journals they keep nightly, and in talk groups.

Parents develop unique strategies for assisting their children with the obstacles that accompany having one full arm. Chris Sledzinski, whose five-year-old daughter, Kaitlyn, is the youngest child in the camp, rarely allows Kaitlyn to back out of an activity at home solely because of her limb deficiency. Rather, she encourages her daughter to find coping strategies. Through her video camera, she coolly watches Kaitlyn hang upside down from the monkey bars and charge up the sliding board with the other children.

Sometimes the campers take day trips. On a rainy day earlier in the week, they went to the Crayola (crayon) factory in Easton, PA, where they worked with clay and practiced drawing with their myo hands. The factory also offered high-tech activities, including a room where children could project colorful images of themselves onto a screen by dancing in front of a camera. Gavacs said she will never forget watching Emily Newton-Gatts, 8, dancing on the screen. "The image did not distinguish between her myo hand and her real hand. It showed a

whole child, dancing and reaching for the sky. I almost cried," Gavacs said.

The Shriners Hospitals network consists of 19 orthopedic hospitals and three burn institutes nationally. All hospital services are provided at no cost to patients or their families.

And everything at the camp--from the food, to the craft supplies, to the glow-in- the-dark necklaces the kids wear on their night hikes--is supplied free of charge by Shriners Hospitals for Children.

Graduation

There is much energy in the cool night air. Ben dances around the campfire, shakes the noisemaker that he made (a soda bottle filled with beads, attached to a stick) and chants, "we're graduating, we're free!"

Uncle Carl (Rebuck) uses an electronic megaphone to send out the "charge" call, the
signal for everyone to convene in front of the cabin. The children don their graduation
hats--mortarboards made out of Styrofoam cereal bowls, cardboard and yarn tassels, decorated earlier in the day by the parents--and wait for their names to be called. Just before the commencement begins, Shannon asks, "Do we have to wear the bowls on our heads?" Everyone laughs.

As "Pomp and Circumstance" is strummed lightly on the guitar, the children come forward, one by one, to receive their diplomas and a bag of "goodies." Inside the cabin, diplomas in hand, they pose for a Polaroid picture that they will put in their journals. The journals are a record of their feelings about their myo hands, about camp, and other experiences. Gavacs said the exercise that day was to write about what makes you happy. One child wrote that she was happy to be going home, but sad to be leaving new friends.

Moments later, the "bowls" are off and Uncle Carl is summoning the children for the night walk. The kids put on glow-in-the-dark necklaces and bracelets and follow their leader into the dark woods, visible only as pink, yellow and blue glowing bands of light. Uncle Carl stops now and then to shine his flashlight on a rock or a bush, hoping to spot a nocturnal critter.

"There is not a full moon this year, so I won't be able to tell them my grandfather's story--the halo around the moon is made by angels when they gather around it," Rebuck says when the group returns.

Leaving tomorrow will be bittersweet. Some of the prostheses will need adjustments back at home, and mastery of the myo arm will continue in the weeks and months to come.

But tonight, these campers are graduates. They go over to the campfire to roast marshmallows and make s'mores.

This story originally appeared in Advance for Occupational Therapy Practitioners, November 30, 1998.