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Supportive Advice for Type 1 Diabetes Parents

Medically reviewed by Manuel Penton, M.D.
Posted on July 2, 2024

On myT1Dteam, members share their struggles with parenting (or grandparenting) kids with diabetes: “Our youngest grandson was diagnosed with type 1 diabetes in early April. This is a new and hard journey. I am looking for ways to feel more confident in cooking for him when he visits or when we are at his home.”

Another wrote, “My 4-year-old son was recently diagnosed with type 1 diabetes. I’m feeling overwhelmed.”

There’s no doubt that parents play a vital role in the management of their child’s diabetes, especially when the child is young. However, this essential responsibility can add more pressure on parents already juggling the stress of parenting in general.

Some of the best advice you can get is from other parents of children with type 1 diabetes. Because they know what it’s like, they can describe how they cope with stressful situations, manage competing priorities, and find a sense of balance and peace within their families.

“Treat your child like there is nothing different other than getting insulin and eating all of their food,” said one member. “Just remember, your child is like all other children, but he or she injects their insulin,” said another member. Here are some more supportive words from the people who understand parenting a child with type 1 diabetes.

1. You Can Set the Tone

Some of the added stress of parenting a child with diabetes can’t be avoided. But it’s important to manage how much of your stress your children see. Studies show that parental stress can negatively affect treatment decisions and your child’s emotions.

    “Yes, it can be frightening, especially for parents and grandparents!” said a myT1Dteam member. “The best thing I can tell you is to be strong and remain calm. My mother fell apart when I was diagnosed, and that affected me for a long, long time. I blamed myself for causing my family pain and hardship.”

    Be calm and supportive,” advised another member. “You can make this transition a happy existence.”

    Of course, setting a positive tone for your family doesn’t mean you should ignore your feelings. Instead, establish healthy and appropriate outlets where you can express your emotions safely, such as a supportive friend, a licensed mental health therapist, or a journal. Although most parents will agree that finding time for yourself can seem impossible, try to schedule some fun and self-care.

    In addition, sharing your concerns in an age-appropriate way and telling your child what you’re doing to overcome them can set an example for them and open the door for them to express themselves. For example, it’s OK to say, “Sometimes, I worry about your blood sugar levels causing a problem at school, but then I remember that you have a school nurse and teacher who is watching out for you.”

    2. Getting Involved Helps

    If type 1 diabetes is new to your family, you may not be aware of all the resources available to you. Learning about opportunities to connect with the diabetes community in your area can help you feel less alone and give you much-needed support. One member suggested contacting organizations like Breakthrough T1D: “They have literature for both kids and parents as well as mentors and meetings/meet-ups.”

    Breakthrough T1D (formerly called JDRF) is an advocacy group that funds research for type 1 diabetes and offers programs for children with type 1 diabetes and their family members. You can search for your local chapter on their website and see their calendar of in-person and online events.

    3. Technology Makes Monitoring Easier

    “You and your child will adjust and manage fine,” said a myT1Dteam member. “I got type 1 diabetes at age five and have had diabetes for 66 years. There have been lots of advances.”

    Perhaps one of the hardest parts of parenting a child with type 1 diabetes is worrying about their diabetes care when you’re not around. However, continuous blood glucose monitoring technology can improve outcomes for your child and give you peace of mind.

    “If your child is wearing an insulin pump, put the app on your phone and you can see his blood sugars,” advised one member. Your child’s doctor can help cue you into the latest diabetes technology to help you and your child with diabetes management.

    4. A Supportive Medical Team Is Necessary

    Members of myT1Dteam have emphasized the importance of finding the right network of health care providers. “Get your child associated with a good team of endocrinologists that are available 24/7 to you. Yes, they do exist,” one member said.

    If you feel like your child’s doctor isn’t listening to your concerns or taking the time to answer your questions, look for another provider if possible. While it’s not always easy to get into a new provider’s office, you can call your health insurance company for a list of providers that are covered under your plan. You can also try connecting with other health care professionals, such as nurses (including school nurses), who may become a valuable resource to you and your child.

    “The good news is that type 1 diabetes is a condition one can live with. Medical miracles happen every day. Stay positive, listen to the doctors, and don’t hesitate to ask questions!” said another member. Even if you don’t know much about type 1 diabetes, it’s never too late to learn. You should be able to depend on your child’s health care team to provide diabetes classes and education.

    5. It Takes Time To Learn and Adjust

    It’s normal to feel down about your child’s type 1 diabetes diagnosis, especially when the news is fresh. However, chances are, your feelings will change with time. Studies show that about 50 percent of parents feel depressed during the first two months of their child’s diagnosis. Fortunately, both feelings of depression and parents’ perceptions about their ability to manage their child’s diabetes significantly improve within 18 months.

    If you’re struggling now, just remember that things may change. Your knowledge of diabetes and your comfort level with carbohydrates, physical activity, and insulin doses will improve over time. Lean on your support network, seek out type 1 diabetes resources, and be patient with yourself.

    Talk With Others Who Understand

    On myT1Dteam, the social network for people living with type 1 diabetes and their caregivers, members come together to ask questions, give advice, and share their stories about their day-to-day lives.

    Do you get emotional support from your child’s diabetes care team, local diabetes support groups, or Facebook groups? As a parent of a child with diabetes, what advice do you have for others? Share your experience below, or start a conversation by posting on your Activities page.

      Posted on July 2, 2024
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      Manuel Penton, M.D. is a medical editor at MyHealthTeam. Learn more about him here.
      Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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