Parenting Your Teen with Type 1 Diabetes
By Nicole Kofman and Ashley Dartnell
Twitter summary: Teenagers + type 1 diabetes = a challenge! Tips from #CWDFFL15 & a parent
For most families, “‘adolescence is second only to infancy’ in terms of the upheaval it generates” within a household. Add managing type 1 diabetes into the mix, and things can get complicated. For parents, it can be daunting to balance giving teens space to grow and monitoring a 24/7 condition as dangerous as type 1 diabetes.
At CWD’s Friends For Life conference in July, Dr. Jill Weissberg-Benchell and CDEs Natalie Bellini and Marissa Town led a workshop called “Parenting Your Teen with Type 1.” There, they elicited an impressive list of diabetes-specific concerns that parents have regarding their teens, including but not limited to:
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How can they have the peace of mind of knowing their child is reasonably within range without being a helicopter parent?
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What will happen when their teen begins to drive and could have a low?
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How do growth hormones interact with insulin and affect blood sugar?
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How will alcohol affect diabetes management?
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What additional steps do people with type 1 diabetes need to take to be prepared for college entrance exams?
All that – on top of keeping up with schoolwork and extracurricular activities! We learned some great tips from the experts and parents at this workshop. Plus, we sat down with Ashley Dartnell, a parent of one of diaTribe’s summer associates who has type 1 diabetes, to learn more about her personal experience parenting a teen with type 1 and to gain a unique perspective outside of what we learned from the Friends for Life workshop.
Our top five actionable tips for caring for a teen with diabetes
1. Numbers are not a scoreboard.
As the all-star team of facilitators shared at the FFL workshop, it is important to help teens develop habits to check their blood sugar frequently but not assign judgment to any number, instead focusing attention on the behaviors themselves.
Instead of asking teens, “What did you eat?” and “What did you do wrong?” after an out-of-range number, say, “Thank you so much for checking,” advised the workshop’s leaders. Instead of making the process seem like an evaluation, they encouraged parents to remain solutions-oriented and focus on how to address the out-of-range number in the moment and, at a later time, brainstorm how to adjust their behavior in the future to stay safe.
CDE Marissa Town, who has type 1 diabetes, shared with the group the language that her father (Mr. Jeff Hitchcock, founder of CWD) used when she was a teenager: “Do you know what your blood sugar is, and have you done something about it?”
On this subject, Ashley said the following:
How many times have I asked my daughter why her blood sugar is out of range, or why she forgot to check? These kinds of questions are not helpful for my daughter, or our relationship. To avoid this kind of negative dialogue, we now discuss what her goals are and brainstorm a realistic approach to get her there. We schedule a time once a week to review how things are going, look at any data available from her devices, and see if there is anything I can help her with over the next week.
Of course, some children might prefer to talk with their parent every day about their diabetes management, and some might prefer to restrict it to once a month. Depending on the teen’s age, the frequency of these conversations can vary. Different families can be very successful with more “hands-off” or “hands-on” approaches – the most important thing is to find a balance that works for you and your teen.
2. Use simple organization techniques for staying on top of things
Between balancing all of their other responsibilities, it can be hard for teens to remember to check their sugar or change their pump or sensor insertion site. CDE Natalie Bellini, who also has type 1, emphasized to parents how complex diabetes is: “If I were a professional diabetic, I wouldn’t be able to control my blood sugar much better than I do now.” Organization can help, however. Ashley shared the actionable tips that she and her daughter have adopted:
I’ve found that teaching my teenager simple organization techniques such as these below has been invaluable and will hopefully establish good habits for the future:
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Setting phone reminders and alarms
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Using a planner
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Keeping a checklist of supplies with her
3. Make sure your teen has someone with whom to openly discuss subjects like alcohol, drugs, and sex.
These behaviors in teens with type 1 can affect their blood sugar control, and it’s important that your teen has someone he or she feels comfortable talking with about these topics.
Ashley shares tips from her own experience with us regarding these conversations:
In my experience, I’ve found that it's best to acknowledge that children will partake in new experiences that might complicate their diabetes management, and it’s worth discussing strategies to stay safe with your teens in detail. Teens might have different needs regarding which devices fit best with their lifestyle, and understanding what those might be can make a significant difference in their diabetes care.
In her book about parenting teens with diabetes, Moira McCarthy gives tips for making sure your teen is as informed as possible about how alcohol, sex, and drugs can affect their glycemic level. Here and here are additional online resources that address this topic.
4. Stay positive and seek support.
Diabetes burnout isn’t only limited to those with diabetes, but can also be experienced by loved ones and caregivers. Ashley shared her own experience with dealing with stress in a healthy way:
As one diabetes educator once told me, “Managing diabetes is a marathon, not a sprint.” I realized I had to trade off tighter control in the near term for a happier family and a child who doesn’t feel that her diabetes rules her life. If you are having trouble managing your negative emotions, I have found that having someone outside the family to talk to can help ensure that diabetes doesn't monopolize all of your family’s time together. This outside support can come from a therapist, an online community like TuDiabetes or Children with Diabetes, in-person support groups, or even having a dog or household pet to provide cheer and companionship.
5. Listen to your teen to find out what works for them.
Particularly for parents whose teens were diagnosed with diabetes early on, it can be challenging to transition from actively managing their disease to acknowledging that it’s ultimately their disease to manage. This transition can be particularly difficult for parents whose children were diagnosed very young; Ashley offered the following anecdote to describe her journey towards accepting that her daughter’s diabetes is ultimately her own responsibility:
“When my daughter was diagnosed at age six, I made her diabetes my mission. I’m now learning that as she gets older, she’s transitioning to navigating her diabetes by herself. I’m here to help her figure out how to do that, but ultimately, it’s her diabetes, her body, and her life. My challenge as a parent has been learning to listen to what works for her, and helping her make that a reality.”
Giving teens the tools they need to manage their diabetes can be an important step for them to transition to full independence regarding their diabetes care and feel fully confident once they move out. As one parent at the FFL workshop observed: “I see a lot of parents that make it their disease. The reality is you want your child to be empowered to take care of this themselves.” On the subject, Dr. Weissberg-Benchell also notes that even when teens are practicing great self-care, they may have moments when they feel overwhelmed, and having parents temporarily take over some (or all) of the responsibilities can help show support. Indeed, as we described last year, “Diabetes is not a do-it-yourself condition at any age,” according to Dr. Lori Laffel, who co-wrote a position statement on diabetes care for emerging adults. Whether it’s a loved one, a healthcare provider, or friends and family, she emphasized the importance of keeping a supportive community around you.
More resources
To learn more about parenting a teen with type 1, we recommend checking out this great toolkit from JDRF. Below are some of the articles that JDRF suggests at the end of its toolkit:
Here are some diaTribe pieces on the subject as well:
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Top 10 Things I Wish My Parents Knew When I Was Diagnosed with Type 1 Diabetes
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Recent Efforts from the ENDO Society and ADA to Address Diabetes Care for Young Adults
Additionally, providing your teen with resources can be helpful as well. We suggest Dr. Korey Hood’s book for teens with type 1 diabetes to get you started.
Lastly, check out these diabetes blogs and forums below, geared at parents of kids with type 1 diabetes:
