Seattle Family Retreat Educates Parents and Kids
The Klaffky family pulled up to the camp on Black Lake in Olympia, Wash., three years ago. They were headed to the Seattle-area American Diabetes Association's Family Retreat because son Ben, then 7, had been diagnosed with type 1 diabetes six weeks earlier. "We were still very much in the emotional phase of learning about the disease and what life would be like," says Kim Klaffky, Ben's mom. She and her husband hoped to learn more about caring for their son at the weekend event's information sessions for parents while Ben and his brother had fun meeting others with diabetes. But the family left with even more valuable insights into life with this often difficult disease—and a sense of hope that would carry them through the months to come.
Seattle ADA has hosted its Family Retreat for 19 years. Many families return every year, and in fact the annual spring program became so popular that a second retreat was added last November, attended by 45 families, about 120 people in all. There, health care professionals and youth advocates taught about diabetes care and staying safe at school. Teens answered parents' questions about driving, high school, and alcohol. And everyone got to meet other families very similar to their own.
A Chance to Connect
Klaffky, who now serves as the volunteer chair of Seattle ADA's Family Retreat, says that the biggest draw for children is getting to know other kids who have diabetes. "[They're] seeing other kids pricking their fingers, getting injections, and counting carbs, and then they compare each other's pumps," she says. "It's such a neat experience for them because they're having fun but also connecting with kids like them."
This year's Family Retreat will be held June 4 through 6 at Camp Berachah in Auburn, Wash. To register, call ADA's Seattle office at (206) 282-4616 by May 14.
Austin Cooper, 18, a high school senior in Marysville, Wash., who was diagnosed with type 1 at age 15, volunteered as a teen advocate at last year's fall retreat. He said the event helps kids build confidence without having to sit in a classroom to learn about diabetes.
"When I had a choice of going to [diabetes] camp, I didn't, because I thought it would be more hospital lectures like when I was first diagnosed," Cooper says. "I now regret [never going to camp or retreat], because it's really powerful.… Parents were able to for a minute not worry about their kids because they were hanging out with teen advocates and adult leaders. And the parents were the ones that got the real instruction."
Family Retreat runs from Friday evening until Sunday afternoon. Children ranging from infants to 12-year-olds play games, prepare skits, compare diabetes gadgets, and find new role models in their teen advocates. Mealtimes are easy on the families, because registered dietitians have worked out the menus' carb counts ahead of time.
Education for Parents
Kris Rinnert, whose 14-year-old daughter, Paige, was diagnosed with type 1 four years ago, found that the retreat offered invaluable information. The Rinnerts attended their first retreat in May 2006. Though Paige wasn't initially interested, the family has since gone back four times. Now, they all volunteer, with Kris running youth activities and Paige serving as a teen advocate. Each time they find that they learn something new. "There's always someone [there] who has a child a little bit older than yours," Kris Rinnert says. "I don't think I'll ever get to the point where we have it all figured out."
At last fall's event, the keynote speaker discussed the psychosocial aspects of living with diabetes. During breakout sessions, the adults split into groups organized by the age of the family's child with diabetes, and discussed issues like planning for a first sleepover or a first day at school. Other sessions included a presentation on how to use a pump and continuous glucose monitor, led by a nurse practitioner from Seattle Children's Hospital. A panel of nurses, a dietitian, and a parent advocate discussed how parents can work with their kids' medical team. A legal advocate gave information about children's rights at school.
The teen panel is always one of the most popular sessions. "We can ask personal questions we want to know about driving, drinking, and sex," Klaffky says. "[The teens] are really open about what their life has been like with diabetes." Cooper, who was on this panel, wanted to talk about his biggest challenge: wresting control of his diabetes from his concerned parents. "The teen panel was so good because we're what [these parents' kids] are going to be in five to 10 years, and they got to peek into the future for a second," he says.
The Family Retreat isn't just for children with diabetes and their parents. It's also open to caregivers, grandparents, aunts and uncles, siblings, and friends of kids with diabetes. Klaffky's older son, Jeffrey, who doesn't have diabetes, volunteers as a teen advocate and goes to the retreat with his family every year.
"As much as it probably annoys Ben when Jeff asks if he's checked [his blood glucose], I think it's actually brought them closer together because they're connecting on a very personal thing," Klaffky says. "Diabetes is really a family affair.… It affects all of us."
Advocates for the Future
Teen advocates are among Seattle ADA's most enthusiastic volunteers, and not only at Family Retreat.
Austin Cooper got involved with the cause in a roundabout way: He formed his own business, Evasion ID, selling MedAlert bracelets designed to appeal to teens, and marketed them to diabetes camps across the country. Seattle ADA asked him to become a youth advocate, and Cooper made his debut at Family Retreat. "It felt like in three days [at retreat]," he says, "I made the biggest impact I had in three years of fighting diabetes."
The teen advocates speak at events like the ADA cycling fund-raiser Tour de Cure and Diabetes Day, a February lobbying trip to the State Capitol in Olympia, Wash. Cooper is looking forward to his first visit to Olympia; he wants to work in politics someday himself. He will graduate from high school this year, having also earned an associate in arts degree by taking community college courses. He plans to transfer into the University of Washington next year as a junior.
Amanda Foster, 17, a teen advocate in Burien, Wash., says Diabetes Day is "really fun, especially because teenagers and kids don't usually get to talk to senators.… You can tell they listen because they don't see that [too often]." She says working as a teen advocate has also influenced her plans. A senior in high school, she wants to eventually become a pharmacist or go into nursing. "When I was diagnosed, the people I learned from the most were the nurses who were diabetic, because they were the only ones who knew what you were going through," she says. "That's what I want to be for other people."
Some teens advocate for diabetes on the national level, too. Meet ADA's new National Youth Advocate for 2010, Amy Johnson:
Education: Senior, Park Hill High School, Kansas City, Mo.
Diagnosis: Type 1 diabetes, in 2004, at 12 years old.
Fun Fact: She is a fourth-degree master in tae kwon do.
Volunteer Work: President of the Teen Advisory Board at Children's Mercy Hospital in Kansas City; appears on a local radio station in support of the annual Children's Miracle Network, which benefits local hospitals.
Plans: To go to medical school and become a pediatric cardiothoracic surgeon. "The challenge and continual learning process involved with surgery, especially involving the heart and lungs, is quite exciting to me!"
As National Youth Advocate: "My overall [goal] is to band both type 1 and type 2 youths together against diabetes."