Later curfews, learner’s permits and a strong desire to be independent — navigating the teenage years can be a bumpy ride for parents. So what happens when diabetes is added to the mix? The combination can create a wholly different situation than raising a teen who’s had type 1 his or her entire childhood. With children who are newly diagnosed during high school, it may feel like allowing the privacy and autonomy your teenager craves while trying to get a handle on diabetes management just isn’t possible.
Or is it? We asked experts — and experienced parents — to share their strategies for providing support to teens learning how to cope with diabetes. Here’s a look at what works.
When told they have diabetes, it’s normal for younger children not to fully grasp the idea that type 1 is a disease that doesn’t go away. On the other hand, most teenagers have reached the developmental milestone of “being able to see down the road,” notes Michael Fulop, Ph.D., a psychologist in Portland, Ore., who works with adolescents and young adults with diabetes.
This more concrete understanding of the future can profoundly shape how a teen responds to his or her diagnosis. “It’s very common for teens to feel sad and depressed after diagnosis and to start yearning for things they think, at the time, they won’t be able to do anymore, like eat their favorite foods or go out alone with their friends,” says Fulop.
Troubling emotions among newly diagnosed teens can also be triggered by suddenly feeling very different from their friends and classmates. “Teens don’t want to be different; they don’t want to be the ‘weird one,’ but so many facets of type 1 and blood sugar management can set a teen up to feel exactly that way,” explains Ann Becker-Schutte, Ph.D., a licensed counseling psychologist in Kansas City, Mo., who works with people facing chronic health issues, including diabetes.
“Developmentally, young children — 5, 6, 7 years old — may be better able to ‘roll with it,’” says Becker-Schutte, when it comes to adjusting to diabetes care routines and explaining type 1 to classmates. In contrast, at first, “most teens want their care routines and even the fact that they have diabetes kept very private and discreet,” she says.
In addition to monitoring blood sugar numbers, it’s important to pay close attention to your child’s emotional state. Sandra C., a mom from Arizona, has put in place a weekly “diabetes date” with her newly diagnosed 14-year-old son just to check in with how he’s feeling. “First of all, my son doesn’t know I call it a ‘date.’ He just thinks it’s me making the two of us a snack to eat together. In between bites, I try to ask a few questions, like ‘what are you and your friends doing this weekend?’ or ‘any new questions about diabetes?’ This approach seems to be working,” she says.
Taking into account teens’ concerns about not being in the spotlight any more than necessary can also help you strategize when it comes to letting the school know about the diabetes diagnosis. “Attending school for the day to teach classmates about diabetes is just something that doesn’t really mesh with most teens,” says Becker-Schutte. Instead, you might do some small-group teaching the next time your child’s friends are over at the house, or you might meet with teachers and the school nurse privately (with your child present) to discuss his or her care plan.
Other ways to help your teen in the early days after a diagnosis include finding a support group of other teens with type 1 (either in-person or online) and setting up an appointment for your teen to meet with the social worker or therapist on your care team.
Striking a Balance
It’s not uncommon for parents of younger children to handle close to 100 percent of diabetes care tasks for years following diagnosis. However, a teen diagnosed with type 1 is usually able to learn pretty quickly how to complete most tasks without assistance.
Taking responsibility for parts of their care can be a good thing. “If a child is diagnosed with type 1 at 13 years old, parents can look at the next five years as a window of opportunity to help their son or daughter really ‘own’ the diabetes before going to college or off on their own,” says Becker-Schutte. Feeling more autonomous can also satisfy a teen’s desire for control and privacy.
So once a child learns the basics, how much supervision should parents still provide? Becker-Schutte thinks a good guideline is to start off much stricter than you want to stay.
“It’s similar to letting a teen use a cell phone or have a social networking account online. Close vigilance is necessary at first to make sure the child is acting responsibly. Once you see this consistently, you may be able to check in on them less frequently — but you do still need to check in.”
Fulop goes one step further and recommends parents sit down with their child to negotiate a clear list of expectations and boundaries.
Upon the suggestion of their diabetes educator, Missouri mom Kristina L. and her husband drew up a formal contract with their 13-year-old daughter that addressed such issues as how often the newly diagnosed teen needed to check her blood sugar, when she should show parents her meter, and what day of the week the three of them would sit down for a family meeting to discuss how things were going.
According to Kristina, “Being so matter-of-fact about what we expect from her has lessened many of the emotions surrounding her type 1, for all of us. Plus, she knows that the reward for keeping up her end of the bargain is feeling more in control of her life. We’ve worked out a good balance.”
Nagging and Burnout
Nagging is an easy trap for parents to fall into, especially if they see teens not fulfilling their end of the bargain with care tasks. Even if your child is slacking off, Becker-Schutte finds that “nagging is a real warning sign that you are too much in charge of the diabetes and your child just doesn’t view himself or herself as needing to take responsibility.”
Instead of nagging, try using words that encourage teens to take more ownership over their health. “Be direct and say, ‘The more you’re in charge of this, the less involved I need to be,’” recommends Becker-Schutte.
If you hear yourself nagging, also take time for self-reflection. “Parents get so focused on glucose numbers that they forget about the child. In the diabetes game, there’s just no such thing as being perfect, says Fulop, who stresses that expectations of perfection often contribute to depression and anxiety in children with type 1.
And what about burnout? “Almost everyone with diabetes hits a wall within a year or two after diagnosis where they just can’t take it anymore,” he relates. “It’s normal, and when it happens in your teen, just be there to lift some of the burden.”
This might mean giving your child his shots or measuring her blood sugar for her for a while. But the very best way to give your teen the support he or she needs is even simpler, says Fulop. “When you see that your child is reaching the limit, simply ask, ‘what can I do to help you?’ And then listen closely to the answer.”
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and 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.