JUVENILE DIABETES: Tweens and Teens
Involving the child while avoiding self-care burnout
BY:MARGARET FARLEY STEELE
By age nine or 10, children may have the motor skills to inject themselves with insulin yet lack what Barbara Anderson, PhD, professor of pediatrics at Baylor College of Medicine in Houston, calls the "emotional muscle"—the ability to carry out the task day in and day out without error.
So a caregiver must remain involved while finding ways to involve the child, perhaps having him pick which finger to prick or to choose an injection site. Those who do best as older adolescents and adults, Dr. Anderson notes, had their parents working with them, allowing them some—but not too much—autonomy.
For families that successfully navigate the elementary school years, the "tween" and teen years can bring them up short. "People tend to think it will get easier, but the opposite is true," says Moira McCarthy of Plymouth, Massachusetts, author of The Everything Parent's Guide to Children with Juvenile Diabetes, and mother to 16-year-old Lauren Stanford, who learned she was diabetic at age six. Teenagers, by nature, want to assert their independence and be like their peers, which can have dire consequences for the diabetic teen.
At age 12, Lauren wasn't testing her blood sugar or using her pump reliably, and even though "she feels horrible when she doesn't care for herself, it makes her feel free," says Moira. At one point, Lauren was hospitalized in the intensive care unit, and Moira blamed herself for allowing Lauren too much responsibility in the handling of her diabetes. Moira also wishes she had shared more of the management with her husband. "I took over, " she says.
Years of constant medical attention get to these children, says Moira. They burn out and cannot envision the consequences of risky behavior. She advises other parents to shorten the reins for preteens and teens. If your child uses a pump, for example, check the equipment yourself to make sure the insulin went through, she says. Lauren, now 16, is an avid athlete and a great kid, Moira boasts. "But for even the smartest and best-adjusted kid, it's too much."
Taking advantage of new technology and traditional supports has helped. Lauren now uses a continuous glucose meter to help control her blood sugar levels. Last summer was her ninth at a sleep-away diabetes camp, and as a counselor-in-training, she had to be a role model for the younger campers. According to Moira, that included Lauren's having to make good healthcare decisions.
Avoiding Burnout
Some teens run into trouble when they hit college. Ryan Bivona was a junior at Trumbull (CT) High School when his Type 1 diabetes was discovered. With his mother's support and conscientious meal planning, Ryan, then 16, managed his diabetes beautifully for the first 18 months.
When Ryan's friends visited, his mom, Kathleen, asked them not to bring big bags of chips and bottles of soda. "You have to educate the people they're with," she explains. Instead, using recipes with calculations for ingredients, Kathleen served homemade baked goods in individual portions.
The challenge came when Ryan left for college. Late nights with friends who are chowing down Chinese food or pizza at odd hours takes its toll. "His numbers are a clear indication of his struggles with food," Kathleen says.
He decided to switch to an insulin pump last summer and enjoys the freedom it provides, but still has trouble managing it properly. "Everyone I've talked to says the four years of college are the worst time to be a diabetic," says Kathleen.
A business-marketing major at Southern Connecticut State University, Ryan travels the 30 minutes to home every weekend, taking a break from the unpredictable campus hours and obtaining better-balanced meals. In his senior year of high school, Ryan had wavered about going away to college. Southern "was a good compromise," says Kathleen. "He's totally on his own now."
For more on Kids and Diabetes, click on:
JUVENILE DIABETES: THE EARLY YEARS
JUVENILE DIABETES: WORKING WITH SCHOOLS AND CAMPS
JUVENILE DIABETES: HOW TO MUNCH A HEALTHY LUNCH
JUVENILE DIABETES: BUILD ON KID POWER