Guiding Growth: Parenting for Diabetes Autonomy

April 16, 2024

Parenting is one of the most difficult jobs people experience. You want to be kind but not too passive, supportive but not an enabler. You want to give your children the world, but not spoil them. When you add a chronic disease, that means their life will be different than most of their peers, making it challenging to enforce all the added rules. As a person with diabetes, a nurse, and a diabetes care and education specialist, I’d like to discuss what I’ve been seeing more lately with families.

My experience

First, a big acknowledgment that I am NOT a parent of a child with diabetes. I am a person living with diabetes who used to be a child with diabetes, though. I grew up with incredibly supportive, yet firm, parents regarding diabetes management. Although the tools we had in my youth to manage diabetes were different than today’s tools, the principles remain similar. I’d like first to share the beliefs that were the foundation of the way they parented me as a child with diabetes.*

*By no means were they perfect—no one is—but due to the connections they made with many other parents, diabetes healthcare specialists, and child psychologists who work with children with diabetes, they collected a wide range of information to help inform their parenting.

Here is a quick collection of their main beliefs:

  1. Child first, child with diabetes second – This was one of the core tenets of their philosophy on parenting children with diabetes. They realized that feeling low every time it was my turn to do chores was not something they could allow while at the same time having extra patience when I was extra moody from high BG’s.
  2. Blood Glucose levels are neutral – Highs and lows were not seen as “good” or “bad” but simply data to inform what to do next. If you’re high, take some insulin and drink some water, if you’re high every day after lunch, maybe we need to adjust some doses. This profoundly impacted my relationship with diabetes. It’s so hard to have neutral feelings about your glucose levels because we feel guilty about messing up one of the 18 million things contributing to glucose levels, so the more you can support your child in this way, the better. As a parent, it is important to strive to avoid saying “Why are you high?” Instead, try to say, “I see your BG is high, let’s try to figure out why and then fix it.” If you find yourself being the “food police” perhaps after learning your child has eaten a whole bag of treats, work with them and consider seeking assistance from a psychologist or other therapist that works with your diabetes team.
  3. Meeting other people with diabetes is critical – My parents learned early on how much of a positive impact meeting others with diabetes had on me, and how helpful it was for them to meet other parents raising children with diabetes. Sharing lived experiences can help you on many levels, and I strongly encourage you to find a community of people with diabetes for your family.
  4. Diabetes care is non-negotiable – Although skipping chores may have happened occasionally, there was never a time when diabetes care would be compromised. If I didn’t want to do something myself, they would do it for me because it was happening whether I wanted to or not to keep me healthy. When insulin pumps were more readily available for kids, they presented them in a way that was appealing to me. On the insulin regimen I was on at the time, I had to wake up early every morning to take an injection, and I wanted to sleep in. Enter insulin pumps and some motivational interviewing by my parents, and eventually, I got started on a pump.

New challenges

Diabetes has changed dramatically since I was a child, and now there are so many different tools and technologies that help people achieve their diabetes targets. Most of these technologies require an on-body device that is worn all the time. This can be off-putting for children who are developmentally trying to be the same as their peers and can increase conflict about diabetes. What I see so often are parents feeling that they want their children with diabetes to make their own decisions about how they manage their diabetes.

Many parents say they don’t want to force their children to wear something on their bodies and often delay starting diabetes technology for this reason. This is really challenging, and everyone is different, so I cannot make a recommendation for every single parent or child with diabetes. What I can say is that aligning with my parents’ belief that diabetes is non-negotiable makes sense to me. That doesn’t necessarily look like telling your teenager with diabetes that they have to wear a specific device, but to me, it looks like telling them that they must work towards achieving their diabetes goals. This could be doing MDI (multiple daily injections) and fingersticks – the most basic of the diabetes technology available – if they are either meeting their glycemic goals or moving towards them. However, if they consistently have very high glucose levels or are not doing fingersticks, it may be time to give them a choice of which CGM (Continuous Glucose Monitor) they want to try. This still gives them a choice but also ensures they are safe and healthy. If you’re worried about trying to convince your child to try the device, enlist the help of your diabetes team.

Here are some tips on having these conversations with your child –

  1. Remind them that nothing is permanent, and they can always stop using the device if it doesn’t work well for them.
  2. Find out what’s important to them and talk about how diabetes technologies can help them achieve their goals. (Read up on Motivational Interviewing for more info)
  3. Talk to them about their fears about trying something new – their feelings are valid! You may have your own fears you can share with them.
  4. Know what you’re willing to compromise about and what is non-negotiable for you. Letting your child be part of the decision-making process and select which device they use can help foster their autonomy while still achieving your goal of improving their glycemic outcomes.
  5. Focus on their strengths and use positive reinforcement to help build their confidence and your relationship with them.
  6. Ask for help from your child’s diabetes team. Many diabetes centers have staff trained to help in different ways. Diabetes educators can help provide information, social workers and psychologists can help facilitate conversations or identify emotions in you or your child (or both), and providers can reinforce or provide recommendations to help encourage the child.

Foster a healthy relationship with diabetes

This sounds hard to do, and some days, it’s impossible to feel you’re in a good place emotionally related to diabetes. But you have to confront and process all of the feelings towards diabetes in order to get to a healthy place where you accept that diabetes is a part of your life. Of course, this is easier said than done, and over time your relationship with diabetes will change.

When you’re first diagnosed, it’s hard to process all the emotions that go along with diagnosis. Your life has been completely disrupted and turned upside down, and you’re trying your best to read water to stay afloat. When you can come up for air, let yourself feel all the things you pushed down trying to keep your child alive. Talk to a counselor, one of the diabetes psychologists, or another parent who has a child with diabetes. It’s normal to go through the process of grieving when faced with a major life change such as this.

Maintaining neutral feelings about blood glucose levels can help your child’s relationship with diabetes. This gives a message of acceptance of the challenges of managing T1D, and according to some studies, parental acceptance is associated with more participation in self-care behaviors related to diabetes and lower family conflict around diabetes.1. Introducing your child to other children with diabetes through diabetes camps, local support groups, or events like Friends for Life allows them to work towards developing their diabetes identity.

This all can really help decrease barriers to diabetes self-care behaviors like checking glucose in public, wearing diabetes devices, and disclosing their diagnosis to others – all of which can help improve health outcomes for your child.

How much autonomy should you give your child with diabetes?

This is a tricky question with no single answer. First and foremost, you have to do what you feel is right for you and your family. I would never recommend making treatment or management decisions that make you feel uncomfortable. The level of autonomy related to diabetes varies drastically based on the situation, the child’s age, developmental stage, and what they have proven to be capable of doing related to diabetes management. If your child is expressing a desire for more autonomy, try to allow some semi-controlled scenarios to see if they can prove their ability to self-manage.

The day-to-day diabetes decisions are easier for children to make as they get older, but the larger management decisions are still quite difficult for most. If you are struggling to get your child to wear a diabetes device or do some type of treatment regimen related to diabetes, I would like to ask you a few questions:

  1. What is a developmentally appropriate amount of autonomy for your child aside from diabetes? How much responsibility do you give them at home?
  2. How much does your child understand about the long-term consequences of not meeting the goals you and your healthcare team set for their diabetes management?
  3. Is it safe to let them make the big decisions related to diabetes?
  4. Have you examined how you feel about the issue and if it is affecting your decision or judgment of the situation?

Remember, usually there are multiple options for diabetes technology or treatment routines, so you can still allow your child to choose between those options (depending on insurance, of course…). I would argue that the top priority is keeping your child safe and healthy, and if what they’re doing is not keeping them safe and healthy, it is well within your rights as the parent to enforce a change in management. If you are uncomfortable being the one to say, “Something has to change,” ask your diabetes educators; I know many of us are willing to help 😉.

It’s never simple

I know that it’s not easy or simple to do these things, but I hope you feel empowered to help your children with diabetes stay healthy so they can grow up to be healthy adults with diabetes. I certainly am incredibly grateful to my parents for getting me to where I am today, but I’m sure it wasn’t easy getting here! The number one recommendation that I hear from diabetes psychologists is to keep an open dialogue with your child and other family members. Every child is different, and what works for some may not work for others.

The closest comparison I have had in my life is when my son was diagnosed with ADHD (definitely not the same as diabetes – acknowledging this here!), and we were trying to figure out what medication works best for him. He lost a ton of weight because they suppressed his appetite, and he didn’t want to try another medication. So, we asked the teachers how things were going since we had stopped the medication, and he was struggling.

It was hard to do, but we knew that we had to try a different medication to see if it would help even though he did not want to put anything into his body. We just started our third type of medication and are giving it a go – it may work, it may not. Nothing is forever, after all.

  1. Daily Diabetes-Specific Family Conflict, Problems, and Blood Glucose During Adolescence

Written and clinically reviewed by Marissa Town, RN, BSN, CDCES