Every day we’re faced with the responsibility of keeping our kids safe. We make sure they’re buckled into their car seats, we demand they wear helmets while bike riding, and we set up parental controls on their phones, computers, TVs, and video games.
But type 1 diabetes adds a whole other layer of responsibility to parenting. When you have a child with diabetes, it’s near impossible to go more than an hour at a time without thinking about their blood sugar. The moment that child was diagnosed, it became our full-time job to think about and manage type 1 diabetes, and we do everything we can to keep those numbers from going too high or too low.
But what happens when that child is invited to a sleepover with a friend, or their team makes the state tournament three hours from home? We want our kids to be normal and have the same experiences as other kids, but we’re afraid. What if he doesn’t take his insulin at dinner? What if he goes low during the game? We panic because we aren’t going to be there to keep those numbers in check. And we fear the child or the other caregivers won’t know what our kids need to stay healthy and safe.
Persis Commissariat, Ph.D., is a pediatric clinical health psychologist at Joslin Diabetes Center in Boston who works with families to help navigate the challenges of raising, and being, a child with type 1 diabetes. To add to her credibility as a clinician and researcher, Persis herself was diagnosed at 11 years old.
“Growing up, I always thought my parents were overreacting to my diabetes,” she says. “But parents are absolutely justified in their fears.”
Nonetheless, she cautions families not to let fear dictate their lives. “It can be very hard for a child to accept their diabetes as part of who they are if their parents are always in fear,” says Commissariat. “The heightened negativity around diabetes makes it harder to view as just routine, and in turn, a child’s engagement with diabetes and sense of self suffers.”
With technology impacting our access to information, for many, fear is only compounded by the constant stream of blood sugar data coming from CGMs (continuous glucose monitors) and insulin pumps, as well as the stories and experiences shared online.
“Parents are often looking for validation, especially on social media,” says Anna Floreen, a social worker and certified diabetes educator who has also lived with type 1 diabetes since she was a young child. Floreen cautions parents that there are many variables that go into a high or low blood sugar, and that online stories don’t always give the full picture of what happened. “I would suggest attending in-person support groups or volunteering in the diabetes community to get a more realistic view of others’ experiences.”
Floreen and Commissariat both agree that modern diabetes technology may help families better manage their child’s diabetes; however, it only works if everyone — the child, the parent, and the provider — is on board. Alarm fatigue, skin irritation, and a constant stream of information can do more harm than good in some families. It’s also important to remember that CGM data, in particular, can sometimes be inaccurate and should not be used as the sole source of information for treating or preventing blood sugar issues.
“The CGM is a safety net, but what if it’s wrong?” says Floreen. “Let’s say a kid is at a sleepover. Mom is watching her phone and sees an urgent low, but it’s really a false reading (a ‘pressure low’ from sleeping on the transmitter). Now the parent, child, and caregiver are all losing sleep because of inaccurate information.”
She recommends coming up with a plan for social situations like sleepovers or other longer-term visits or getaways. Just like with school, develop a plan with your child and your healthcare team for how to manage diabetes when away from home. This may include other caregivers, coaches, teachers, etc., but it’s important to get everyone involved on board.
“Lay out the situations or times that you want the child to check in, if that is necessary, to make you more comfortable,” Floreen suggests. “It might be before dinner, before activity, and before bed, and those may be the only times he or she must think about diabetes. But once you agree, those times are nonnegotiable.”
Commissariat agrees that open communication with your child ahead of time, as well as with other caregivers, will go a long way in alleviating concerns. She also recommends considering what level of independence your child has at home and how that translates to situations away from home.
“If you can’t trust them away from home, what is the reason for that? Sometimes it’s not a lack of trust but fear that is taking over,” she says. “Showing your child that you trust them with certain parts of diabetes care can make your child feel empowered and important. You may still be fearful, but learning to acknowledge the fear while demonstrating trust and allowing some independence will go a long way for you both.”
That trust can also be built at home first. Commissariat recommends having an age-appropriate plan for blood sugar management at home as a way to build that independence and engagement. For older children, this could mean agreeing that Mom and Dad don’t intervene unless blood sugar is low or high. Or it could mean just having your child be in charge of bolusing for dinner. Once that comfort level is established at home, you may feel more apt to trust the plan when your child is outside of your supervision.
“Social freedom is very important. If a child is invited to go somewhere or do something fun, the answer should almost always be yes,” said Commissariat. “But we have to put some guidelines into place to make sure they stay safe, feel involved, and everyone is comfortable.” Including Mom and Dad.
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.