|
Camp Teaches Kids with Arthritis They Aren't Alone
By Dianna Borsi O'Brien
Kimberly Maul knows what she likes best about Joint Adventures summer camp.
"I don't get teased here," said Maul, a 10-year-old from St. Louis. Maul attends a camp designed just for her and kids with arthritis.
Surprised that children get arthritis? Don't be. Kids are susceptible to the same 100 diseases associated with arthritis that affect adults.
Nationally, about 300,000 children have arthritis -- it is more prevalent than juvenile diabetes or cystic fibrosis.
But Maul reminds anyone that children with arthritis are still kids, who sometimes endure special challenges.
Diagnosed with lupus, an autoimmune disease associated with arthritis, Maul says she often feels left out at school.
"I went to assembly and everyone else sat on the floor. I had to sit in a chair," Maul said. Nor do her problems disappear when she goes home. "I can't sit on the floor with my dog, he loves sitting down on the floor with me."
One day at school, Maul says, a boy said to her, " 'I wish I had your life. You get to ride on the elevator.' I said, 'No, you don't.'"
"I hurt almost every day, everywhere sometimes," Maul said.
What's the Big Deal About Lupus?
Lupus symptoms include a butterfly-shaped rash on the face, pain, stiffness or swelling in the joints. This disease is also known as systemic lupus erythematosus or SLE. Lupus can affect the kidneys, nervous system, lungs, heart and blood-forming organs as well as the skin and joints. It is often accompanied by pain, heat, redness and swelling in affected organs, according to the Arthritis Foundation.
But that is a disease. Maul's a little girl.
For her, lupus means both daily pain and daily proof that she's different. "I feel weird. Sometimes I pretend I don't have it," Maul said.
What is a JA Camp?
At Joint Adventures Camp, Maul does not feel different.
Watching the camp's annual water fight, there is little evidence that anyone has arthritis. Armed with water balloons, pails and even garden hoses, no one sits out the shrieking, dashing, ambushing melee.
Yet, all campers and junior counselors have arthritis.
Hailing from Missouri, Kansas and Illinois, the children and junior counselors spend a week at camp making crafts, swimming, fishing, playing ball, even eating the standard issue macaroni and cheese, drinking a beverage seemingly found only at camp which is a flavor best described as "red."
In many ways the camp is like any other summer camp. And that's the point.
"I used to think I was weird, strange, different," said Jackie Clifford, 12-and-a-half, from Wichita, Kan. "I thought I was the only one. Now I know I'm not the only one."
But in some ways, the free camp, sponsored each June by an anxiliary group through Children's Mercy Hospital in Kansas City, is like no other.
Why is a Camp Important
At JA camp, children learn more than how to make a toolbox or hook a fish. They also learn that they are not alone and their disease neither defines who they are or what they can do.
"We're learning we're just kids. We're normal," says Clifford.
At camp, they also discover that some adults and other children care. Some adults who help at the camp do not have arthritis and do not have a relative with arthritis. They simply want to be there for children with arthritis.
The camp directory lists six people as camp staff. Another 20 people are listed as volunteers. And many of these volunteers give up a week of vacation just to spend a week in a cabin with children with arthritis.
They Are Not Alone
"For many of these kids, this (camp) and Cabin Fever (a weekend event in the winter sponsored by the Eastern Missouri Chapter of the Arthritis Foundation) are the first real times kids get to meet other kids with their disease. There's usually only one in their school or community," says Katherine L. Madson, M.D., Ph.D., the camp physician.
As Susan Hunter, a camp staff member, explains, it may be the first time children see others like them who have swollen fingers or stiff joints. Some children have bent limbs or shortened height that comes from some of the medications used to keep their chronic illness under control.
Or maybe they sport the telltale "fat face" of a child taking glucocorticoids, medications such as Prednisone, which is occasionally linked to weight gains, says Hunter, who is one of the state's five Juvenile Arthritis Coordinators.
"Here maybe they've put on 50 pounds, they don't even look like the same kid," Hunter says.
But at this camp, everyone understands why sudden changes occur.
As Jessica Leeds, a nine-year veteran of Joint Adventures Camp, put it, "I had to come back. The one thing that's always meant the most to me is meeting the people. They understand what you're going through."
Despite the fact that Leeds came from Emporia, Kan., population 25,000, she said, "The town I came from, I was the only one who had anything like this..."
Back as a counselor this year, she explains why camp was so important to her as a youngster, "Camp was the one week out of the year I could be myself. I didn't have to hide anything why I wasn't feeling well."
Moving Beyond Limits
"The sense that other kids have arthritis, that they're not alone is so important," says Madson, a pediatric rheumatologist at Children's Mercy Hospital and Clinics in Kansas City. "They learn that everybody has a limitation of some kind. They come here and all of a sudden it's 'Whoa, she's my taking medicine,' and they don't feel so strange."
For example, when they play ball, the children who cannot run, bat. Those who cannot swing, run.
"We all have something special about us," says camp volunteer Karen Siegrist, R.N. of Washington University in St. Louis. "It doesn't have to limit us. We may have to do something a different way is all."
And this discovery is how kids learn at Joint Adventures Camp, Madson says.
The kids ask each other questions, she says, such as 'Can you go out in the sun? How long do you have to soak in the tub?' And through these questions, they learn that even though they have arthritis and may be dissimilar from other children, some differences do not matter.
Teaching Tough Lessons
"Some kids who have arthritis have a tendency to 'milk' it," says Siegrist. However, this behavior is not reinforced at the JA camp by other kids, which often results in better self-awareness and behavioral changes.
"... when they see others keeping up, they don't want to be called a whiner," she says. "This makes a big difference in how kids adjust to the disease."
The children in Kim Miller's cabin are unlikely to try and "milk it."
A camp counselor at the Joint Adventures Camp, on the job, Miller is one of the state's five Juvenile Arthritis Coordinators with the Missouri Juvenile Arthritis Program.
Miller works with children and families to make sure they receive the care they need. As a complex, chronic illness, juvenile arthritis requires a significant amount of coordination among a myriad of health-care professionals, which Miller provides.
Moreover, Miller has juvenile rheumatoid arthritis.
Diagnosed at 11, Miller credits her mother for her no-coddling approach to the children in her cabin. After all, that's what Miller grew up with and what she credits for her own "can-do" attitude.
She tells the 10- and 11-year-old girls in her cabin, "Everybody here has arthritis. If it hurts, you can just go a little slower."
Besides, she points out, "They're not limited. They all run to and from the pool."
Kids at Camp
At this camp, the day starts not with reveille but with children hitting the hot tub for a good long soak. Afterward, a child may have a massage or physical or occupational therapy. The day's routine may include taking what they call their "meds," pills or shots, depending on the disease and their schedule and other factors.
But there are no lectures on arthritis or the disease.
"We try not to do anything educational," says Hunter. "They get that in clinic."
Instead, they munch on watermelons under the trees, casually competing to see how far they can spit the seeds. Some children sit at the picnic tables perhaps making earrings or bracelets, appearing, it seems to actually be listening to loud music instead. Others learn how to fish. Older girls sit on the side of the pool while the younger kids splash in the water. Games, a carnival and the long anticipated, or long dreaded depending on the gender, dance is coming up.
"This is their chance to forget they've got a disease. They can run, they can use the hot tub in the morning and evening," says Hunter. "We try to help them forget they have a chronic disease."
Of course, forgetting about arthritis is impossible. The children also receive physical therapy and Madson tries to subtly convey a message that stretching and exercise need to be a part of every day life. She offers tips to all campers.
Parallel to daily exercise, Madson is the camp's chief proponent of the yearly water fight donning a plastic bag as a coat, and helping the kids reload their water machine guns and pails.
Families Need Breaks, Too
When a child has a chronic, painful disease such as arthritis, it's tough on the whole family. Parents may face a morning struggle to get a child with arthritis up and dressed. Then there's the problem of reminding their child about exercise or taking medicine. Even school may not be much of a break for parents.
Misunderstandings about medications or about what the child can or cannot do often occur.
Arthritis also is sometimes scary. A bad flare can land a child in the hospital. Brittle bones caused by arthritis and the medications used to fight the disease can result in broken bones, visits to the emergency room and other medical traumas.
But when a child goes to Joint Adventure Camp, everyone gets a break.
"For parents, they know we know all about the medicine," Madson said. "We've got O.T. (occupational therapy) and P.T. (physical therapy), we have hot tubs to deal with stiffness."
A physician is must be on site at all times. Several of the counselors are Juvenile Arthritis Coordinators and many of the staff and volunteers are also health-care professionals as well.
To help entire families cope with a child's illness, Hunter says the auxiliary that puts on the camp also holds different activities throughout the year.
Events such as a Winter Party held in February include the siblings who do not have arthritis. Other organizations, such as the Arthritis Foundation, hold events for the children with arthritis and their families.
But camp is a week long, which offers a respite to everyone, Hunter says.
"Parents can do something special for themselves or with their other kids who don't have a chronic disease," she says.
Camp may offer the child a break from parents who may tend to be too protective.
"I think it (camp) is good for the whole family," Hunter says.
|
|
