When her son was diagnosed with type 1 diabetes three years ago at age 5, Alabama mom Melanie T. discovered that only one thing helped her to feel more in control over what seemed like a very out-of-control situation.
“To get out of that scary, dark place I was in after my son’s diagnosis, I made it my full-time job to do whatever it took to keep his numbers as close to perfect as I possibly could,” she says.
This translated into setting her alarm clock to wake her up at two-hour intervals all night long to check her son’s blood sugar, stopping by school on a daily basis to check sugar levels and dose insulin — even with a school nurse on staff — and making up elaborate menu plans at home.
When her son’s numbers were “good,” Melanie rejoiced. But when his numbers were “bad,” she admits to feeling like she had failed.
Sound familiar? When a child is diagnosed with type 1, it’s a normal reaction for parents to strive for nothing short of perfection in counting carbs, calculating insulin doses, and adhering to diabetes-care best practices. After all, controlling blood sugar is key to living a long, healthy life with type 1.
What perfectionist parents may overlook, however, is the effect their laser-like focus on the disease is having on their children — and their own stress levels.
The Perils of Perfect
“There really is no such thing as perfection when it comes to diabetes care,” says Kate Roberts, Ph.D., a Massachusetts-based licensed clinical psychologist and certified school psychologist who routinely works with children with diabetes. You can do everything right, and sometimes blood sugar will still be out of range, due to any number of causes outside your control.
Aiming for the impossible can take a toll on everyone involved. “When parents become so focused on perfect blood sugars, they may put the diabetes first and forget that a child needs to be a child,” says Roberts. Birthday parties may seem way too risky with so little control over the food served. Letting teens gradually take over their own self-care may seem out of the question, since it may mean parents letting go of the reins on checking and dosing.
Deeming any out-of-range reading unacceptable may even put long-term blood sugar management in jeopardy. “Overly anxious parents can create an environment of fear, in which children try to cover up slips or lie about snacks or numbers to gain parents’ approval,” cautions Roberts.
Letting Go — Just a Little
If you tend towards being a perfectionist, how do you break the habit? For Melanie, examining how her attitude was affecting her son was enough to help her finally let go.
“His numbers started going high in the afternoon, but the snacks I had put out for him after school hadn’t even been touched,” she remembers. “It didn’t take me long to figure out that he was sneaking food — not junk food, just other food in the house. I had a big chart on the fridge with a checklist of his foods for the day. When I confronted him, he told me he knew how hard I worked on the chart, and he didn’t want to disappoint me by asking for something else to eat. As soon as he said this, I had a light-bulb moment: My son should not view taking care of his diabetes as something that pleases or disappoints me.”
That’s a very helpful realization for parents to embrace, says Deborah Bowlby, M.D., M.Sc., division chief of pediatric endocrinology at the Medical University of South Carolina.
“We know that this issue [feeling the need to be perfect] is such a big one for parents…it’s also one of the causes of caregiver burnout,” says Bowlby. “To avoid it, try to focus on trends in blood sugar numbers over time, not individual numbers.” This way, you don’t need to beat yourself up when there’s a stray high or low that requires correction.
Bowlby also encourages parents to meet with the counselor or therapist attached to their child’s diabetes care team in order to discuss the deeper issues of fear and guilt that may be lurking beneath the surface of perfectionism. Joining a support group to hear how other parents handle the challenges of type 1 can help too.
As for Melanie, she found that scrapping the big chart on the refrigerator and instead spending a little time with her son brainstorming the kinds of snacks he wants to eat each week has had an additional benefit. “When we plan his snacks, we talk about how to count carbs and what that means for insulin. He’s becoming better and better at telling me — without even looking — how many carbs a food contains,” she reports. “Since I’ve given up a little bit of control, his A1C levels aren’t any different than they were before. I can now believe that I won’t be 80 years old and still checking his blood sugar for him! He will do it himself and be just fine.”
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.