To paraphrase an old Pat Benatar song, love between Pam Ryder and her 13-year-old daughter, Hannah, can be a battlefield.
“I’ve been told, ‘I hate you!’ more times than I want to admit, but I know she understands that I don’t actually want to be on her back all the time. But as soon as I step back, there’s something else. The stuff that happens to her can be scary for a parent,” Ryder says.
Sounds typical, right? Not only because Hannah is a bright, strong-minded teen who has been testing her boundaries, but also because she has type 1 diabetes. Ryder often finds herself torn between trying to protect her daughter’s health and teaching her how to be a responsible adult.
“You have to reconcile the competing demands of the growing young adolescent with the demands of diabetes,” says Lori Laffel, M.D., chief of the pediatric, adolescent and young adult section of the Joslin Diabetes Center and Children’s Hospital in Boston.
“That means recognizing the greater need for independence as part of normal development, like going to the mall, sleepovers, and school trips, while having safety nets in place,” she says.
Prepare for a Bumpy Ride
We all know that hormones kick in as kids hit their tween years, ushering them into puberty. For kids with type 1 diabetes, though, this makes the already tricky job of managing blood sugar levels that much more challenging.
“During pubertal growth and development, insulin needs may change. Plus, you have the social, emotional, and behavioral triggers of early adolescence,” Laffel adds.
Transition Care Gradually
Depending on when your child was diagnosed, the tween years may be the time when you begin teaching your child some of the ropes when it comes to diabetes self-care, or furthering lessons already learned.
Either way, it’s important to talk about realistic expectations and not to let her take on more than she can deal with. First, she simply may not be mature enough to handle making the right choice each time she is presented with a challenge. Second, like any tween, it’s also reassuring for your child to know that you’ve still got her back no matter what as she explores her limits.
“It’s really about how you share responsibility. When a kid perceives a parent as staying involved, they tend to do better themselves,” says Korey K. Hood, Ph.D., associate professor of pediatrics at Cincinnati Children’s Hospital Medical Center.
“I see Hannah taking two steps forward and then thinking, ‘Uh-oh, what did I do?’ and then taking two steps back. I recognize that with my other kids, too. It’s critical to not let her be out there on her own for too long,” Ryder says.
Avoid the Blame Game
“It’s important that parents try not to blame themselves—or their children—for crazy blood sugar numbers, especially as a child is just taking the first steps toward self-management,” says Laffel. “We never want children to feel like when diabetes management is hard, it’s their fault.”
What works for Ryder is a practical approach that emphasizes family teamwork. “I’ll sit down with her and go through the numbers. Because ultimately it’s going to be her responsibility,” she says.
Call in Your Pro Team
Having a third party to intercept and interpret competing needs during this transition can help smooth communication. Talking over issues with someone that’s not a parent can be incredibly helpful. Parents themselves can also benefit from sounding out difficulties.
“Our diabetes management team helps talk me off the ledge sometimes and helps me put things in perspective, as in, ‘That’s normal,’ and ‘Yes, she’s going to do some of that stuff,'” Ryder says.
“As you negotiate new roles with your tween, emphasize respect on both sides,” counsels Beverly Adler, Ph.D., a certified diabetes educator in Baldwin, New York.
“This is an emotional time for parents, and diabetes care can become a major conflict. But that’s the last thing you want. I believe very strongly in parents being respectful of their children as well as the tweens being respectful of their parents. Watch for accusations. A parent can give a really good message by saying, ‘I trust you, but I need to keep some focus on how well you’re doing,'” she says.
Talk About Fears and Hopes
As children with type 1 diabetes grow, they have more opportunities to learn about and to understand worst-case scenarios and the potential risks of the disease, which can be scary. When you know your child has been exposed to such information, don’t downplay it. Instead, take it as a chance to both instruct and reassure, as Ryder did. “We had a conversation about things that can happen if people haven’t taken care of themselves, and why we then want to try to keep her blood sugar levels as controlled as possible.”
On the plus side, Ryder says, the family talks about treatment advances. In fact, Hannah has been involved in raising awareness of type 1 diabetes as a spokesperson for the JDRF, which has been empowering for her. “We’ve tried to get her involved in finding a cure, too,” Ryder says, “to let her know there’s something she can do.”
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice; they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.