Hallee Acquanita
MS, RDN, LDN, CDCES
Parenting a child with type one diabetes has a unique set of challenges. The diagnosis itself can be overwhelming, and then come the questions of how this impacts your family. Know you are not alone in wanting the best for your child, and the following tips may offer some ideas to consider if your child has type one diabetes.
1. Get Educated
Your child may have ended up in the hospital with this new diagnosis. Kids will look to their parents for the answers. But what if you don’t have the answers?
The first thing to do is get educated. Your family may have people with diabetes already in your life. There are many different types of diabetes and different treatments depending on the type. Type one diabetes is also called insulin-dependent diabetes, meaning that once the diagnosis is made, insulin is a lifelong treatment. It will be important to be educated on the basics of what diabetes is, how to check and monitor blood sugars, how to take insulin injections, nutrition to help manage blood sugars, and what to do in case of illnesses/emergencies. Also, know that children with diabetes can live happy, healthy lives and do everything kids without diabetes can do.
Get a team of healthcare professionals who are well-versed in pediatric diabetes. This includes but is not limited to, a pediatric endocrinologist, nurse, nurse practitioner, dietitian, certified diabetes care and education specialist, child life specialist, social worker, and therapist/psychologist. Healthcare professionals with the Certified Diabetes Care and Education Specialist or CDCES credential have specialized in diabetes care. CDCESs are the experts on diabetes management and are well-informed on current research and best practices to provide education and guidance to people with diabetes. The impact of diabetes can be felt in many areas of life and it is important to have a team that can best support your child’s health in every area.
2. Take Notes
Expect to follow up with your physician, within one to four weeks of diagnosis, and routine follow-ups are usually every three months. There will be time to ask questions, learn about diabetes technology that may be helpful for your child, and learn how your child’s health is best managed. Remember, everyone is different and this includes diabetes treatments. Know that no two days are the same and diabetes will definitely reinforce this. There are many different factors that can impact blood sugars. So it is best to educate yourself and your family, take note of what works well and what does not work well.
3. Role Model
Even if you are anxious and unsure of what this means for your child, remember “monkey see, monkey do”, and children will often look to their parents for guidance on what to do and how to act. Modeling the behavior you want to see that will set your child up for success is key to the start of managing a chronic disease. If the parent is panicked and dwelling on the negative instead of a neutral to positive outlook, then children will take that in and likely follow suit. Instead, if a parent asks appropriate questions, confronts the challenge, and models being confident with managing diabetes, then this provides an example that shows children they can do it too.
4. Involve Children in the Process
It is natural to want to protect children and shield them from challenges. However, diabetes is a condition the child will have to live with for the entirety of their lives and it is important to build acceptance and confidence. It is challenging to understand what your child is feeling in his or her body and sometimes children have a hard time communicating this as well. Communicating with children about their condition will allow them to talk about if anything is bothering them. Involving children in learning about their diabetes and how to manage their condition at an age & developmentally appropriate rate is important to give children independence and promote responsibility for their health. For example, young children can typically help in checking their blood sugar by picking out the finger to use or even fully using the device. Young children may also help recognize meal & snack times, practice giving injections on a stuffed animal, recognize what foods have carbohydrates, or know to ask an adult before eating. Preteens may be giving their insulin injections with adult supervision, discussing their healthcare with their doctor directly, and learning how to count carbohydrates. Teenagers may be advocating for themselves while navigating new social situations, picking up their prescriptions, and learning how insurance works. Preparing children to be responsible and care for themselves one day can be challenging to navigate along with family dynamics and other barriers that may come up. Social workers and counselors may be helpful to resources to consider for advice & resources and when challenges arise.
5. Avoid Power Struggles
Children appreciate consistency, and managing diabetes is no different. Providing consistent expectations for what needs to happen to keep the child healthy can help children adjust better and know what to expect. Reinforcing positive behaviors instead of negative ones may also lead to further acceptance of the condition even when diabetes may not be fun to manage. For example, if a preteen child starts skipping their insulin, it may help to ask why they are not taking insulin and address, re-educate on why it is important, then come up with a solution together, potentially giving the child a choice, where either way still keeps them healthy. Also, knowing that living with and caring for children with a chronic disease like diabetes can lead to burnout: meaning after making healthcare decisions and managing diabetes day in and day out or being different from peers can be tiring. If you as a parent or your family are experiencing a challenging time or change in behaviors, it may be helpful to consider meeting with a mental health professional.
6. Get Support
It is always helpful to have a support system for all stages of life and it can make all the difference to be able to connect with people going through the same challenges. Many social workers have recommendations for community resources or can at least connect you with another family that has children with diabetes. If not, connecting with your local chapter of the Juvenile Diabetes Research Foundation or JDRF can provide helpful resources for school plans, insurance, mental health, up-to-date research studies, and general items that come up from living with type one diabetes. JDRF also has many volunteer opportunities and events to get connected with other people that have diabetes.
A wonderful experience for kids with type one diabetes is going to a summer camp just for kids with diabetes. In general, many camps do not have the medical staff on-site to be able to support kids with diabetes, but at camps for kids with diabetes, there are experienced medical personnel and other kids just like them. This gives your child the amazing opportunity to see other kids prick their fingers, take insulin, and create lifelong friendships.
7. Meet regularly with a Certified Diabetes Care and Education Specialist
Throughout their lives, your child’s understanding of diabetes care and self-management will change. It is helpful to have continual support that can help guide their journey and meet them where they are. A CDCES does just that and can not only help answer questions on all things diabetes, they may also help conduct education during transitional times such as junior high to high school, but help also start the process for diabetes technology such as insulin pumps and continuous glucose monitors, and recommend resources for preparing for college. Having an expert in diabetes in your family’s corner can make diabetes that much easier to navigate.
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