Parenting a Child With Diabetes: The Stressors, Challenges, and Bond
Parents and diabetes care experts share their recommended strategies on navigating life and taking care of your mental health as the parent of a child with diabetes.
You administer insulin shots along with bedtime stories. You call the school much more often than other families have to. And you try to walk the line between being an overprotective “helicopter parent” and keeping your child with diabetes safe and healthy. Your relationship with your child is in many ways the same as other parents and their children, but also different.
Experts know, as do parents of children with diabetes, that the relationship and bond between a parent and a child with diabetes can be both strong and rife with obstacles. Here’s what they have observed, along with a few tips on parenting a child with diabetes and the most common challenges to be aware of.
A parent’s stress of “being their pancreas” is real — and measurable
It’s not just you. Parenting a child who has diabetes is hard.
“From the parent perspective, it can be very stressful and isolating to have a child with a chronic illness,” said Dr. Cara Goodwin, a psychologist who has worked with multiple families navigating chronic conditions, including diabetes. “Research finds that mothers in particular show very high levels of stress when caring for a child with chronic illness. Research also finds that the most stressful aspect of having a child with a chronic condition is the lack of control or uncertainty related to their child’s diagnosis and prognosis.”
One study that analyzed stress and posttraumatic stress in mothers of children with type 1 diabetes concluded that the mother’s stress also impacted the child’s behavioral and metabolic health, putting additional pressure on stressed mothers to destress for their children. This pressure to destress can in turn lead to additional stress and worry, compounding the problem.
For one Ohio mom, Stacie Keller, the stress began with her son Mason’s diagnosis. He was diagnosed at age 2, and is now 9 years old. She remembers thinking at first that he had a urinary tract infection. “You never want to go to the worst case scenario, right?” she said.
“I was panicky and worried and I cried the whole time in the hospital. I remember sitting there crying the first time they made us give him a shot and check his blood,” she said. “That’s not something you really want to do to your child, but now you have to do it all the time.”
Keller said that she, like so many parents of young children with diabetes, had to “be his pancreas.” She said she turns to organizations like A Kid Again, and other parents with children with type 1, for support when she feels overwhelmed or needs advice.
These stress factors can become more complicated and further impact a parent’s ability to care for their child’s condition if they have additional issues, such as financial constraints or marriage conflict, another recent study shows. Balancing the weight of “typical” parenting can feel like too much to handle when you add on the care of a child with diabetes.
Growing up brings even more worries
The first day of college, or even kindergarten, is a big deal for all parents, but for those who have children with diabetes, it can feel especially frightening. Whether the school nurse is stepping up to help, or your child is moving into more of an independent and self-sufficient role, letting go can be difficult.
“When he went to school, it was a big big deal for me, because I was putting his care in someone else’s [hands] for the first time,” Keller remembers. “His first [school] nurse was really helpful. She called me for everything and watched him great….but it’s still scary.”
Goodwin has seen from the parents in her child psychology practice that it’s tough to resist being overprotective as children grow up and begin to be able to care for themselves. Many parents of children with chronic illnesses are used to seeing their children as more vulnerable than others, she explained.
“Although the intentions of these parents are to shield their child from any future hurt, this type of overprotective parenting may actually hurt their child more in the long-term than allowing them to take risks would have,” Goodwin said. “In addition, it prevents their child from living as ‘normal of a life’ as possible.”
Balancing sibling care can feel impossible
Most parents strive to treat each of their children similarly, meeting their individual needs and spending adequate time and attention on every child. But for some parents who have a child with diabetes and another child (or more than one) without, this can feel daunting, and even impossible.
“I have an older son who does not have type 1. I think it’s just hard trying to treat them the same, and not put diabetes into the situation,” Keller said. “Ethan, my older son, can just go into the pantry. He’s 13 now and sort of eats what he wants. Mason has to always check with me…’Can I eat this?’” She says it’s hard that he can’t sometimes have dessert when another sibling can after dinner.
Goodwin points to research that concludes siblings of children with chronic illnesses also have higher risks of negative psychological effects, like depression and anxiety, like their parents do. Worrying about how siblings are handling family life, along with dividing attention equally, is one of the most challenging aspects of parenting.
“Sometimes I think it’s harder on the sibling,” Keller says. “In a way, the child with the disease is getting more attention all the time.”
What experts hope parents can try
The good news is that even though the odds can feel stacked against parents and their family dynamics as they navigate diabetes together, the experts and Keller all point to the potential for a stronger parent/child bond as a result.
Here are tips for navigating the toughest moments of parenting through diabetes:
You need more than an endocrinologist
Wrap-around services, starting with diagnosis, is one recommendation most of our experts made. “Do you have a psychologist on board? Can they refer you to someone? Is there anyone you can talk to, to just get support? Is there a peer-to-peer support network you can access for people’s advice?” Jeannette Söderberg, European Research Director at JDRF, recommends checking out these additional resources as soon as possible for comprehensive care. Lara Goodrich, a child psychologist who has worked with families in this situation, said to seek out “multidisciplinary clinics” that help with emotional interventions, and do much more than monitor insulin levels.
Work on building self-esteem in your child first
While it may seem like the ultimate marker of success is your child’s A1C, Söderberg says it potentially should be how your child is doing with self-esteem. She referenced a study that suggests the two go hand in hand, with children who have higher self-esteem levels reporting better A1C scores anyway, as a part of better self-management of their condition. You can help with this by assisting your child in learning new things, taking responsibility and succeeding (and praising them for it), role modeling, and focusing on their strengths.
Practice authoritative parenting, not authoritarian parenting
While both types of parenting are strict and have boundaries, expectations, and routines, authoritative parents are loving, supportive and responsive to their child’s thoughts and feelings. Authoritarian parenting, however, lacks that balance, with no regard for the child’s opinions. Like with all children, these boundaries, when communicated lovingly and consistently, are important. One study showed that authoritative parenting predicts better glucose levels. Authoritarian parenting, on the other hand, predicts poorer glucose levels, according to separate research.
Give your child some freedom, but with a cautious eye
Söderberg said that giving children enough freedom, but not too much all at once, can be compared to dentists recommending parents brush their children’s teeth until age 12. “Are they equipped or mature enough to actually do it properly and get all sides of the tooth? And I don’t think anyone brushes their 12-year-old’s teeth, but that’s the recommendation because that’s the level of maturity when they are able to brush,” she said. “So compare that to having a pump and a CGM.”
The “if they didn’t have diabetes” mom-approved test
Keller has a go-to question she asks herself whenever she isn’t sure about a parenting decision — “Would I let my child do this if he didn’t have diabetes? If the answer is ‘yes,’ then you should try to make it work with diabetes,” she said, referencing decisions like birthday parties, trampoline parks, and other potentially difficult to navigate situations.
Keller says in spite of the obstacles, and possibly because of some of them, her bond with Mason is solid. “I think we’re just really open about everything,” she said. “I think it’s made us closer.”
The most helpful tip, said Söderberg, is starting early. “If you can establish these positive family relationships earlier, and not wait until your kid is 14 and trying to be independent, that’s helpful,” she said.