How parents can help their child learn to self-manage diabetes

Masha is a cheerful girl in her late teens who loves to dance and makes new friends easily. Four years ago, she was diagnosed with type 1 diabetes, just after celebrating her eighth birthday. As Masha moves from primary to secondary school, she will have more and more new responsibilities, tasks, including learning to manage her diabetes herself. Masha’s mother, Irina, will tell us about how she and her husband were able to gradually entrust their daughter with self-management of diabetes, and will talk about all the inevitable difficulties and experiences that accompany this process.

Like many people who have been diagnosed with type 1 diabetes, Masha’s diagnosis came out of nowhere – no family history, not even the classic symptoms of excessive thirst and urination. In our case, the diagnosis was made at the beginning of the development of the disease, but, as is the case with most diagnoses, Masha had to spend several days in the hospital so that we could learn how to perform the functions of her pancreas. We had wonderful teachers and doctors at the children’s hospital, and Masha was present at almost all conversations and discussions.

Our approach was to challenge Masha without overloading her with information that would be difficult for an eight-year-old to comprehend. We knew she was able to understand how her body worked, could do calculations to count carbohydrates, and learn how to use a pump and a continuous glucose monitor (CGM), so we took her to all of her diabetes theory and practice sessions. Sometimes she took an active part, sometimes she was distracted by children’s activities. When it came to important moments, Masha was always involved in discussing the features of her body and the actions that are necessary to ensure its normal functioning when the pancreas cannot cope with this task.

During the first year, we supervised Masha’s entire pumping process – entering carbohydrate data, bolus insulin, temporarily changing basal levels, restarting and refilling tubing, and so on – so that she figured out how to control the pump. As we thought, everything worked out for Masha and she famously figured out the operation of the pump and, although we continued to take part in this process for control, we were sure that she would cope on her own.

Masha felt her freedom more and more, starting with small steps and moving on to more and more. Each time we gave her a little more independence, we considered two factors: can we be sure of her safety; and is she intrinsically motivated enough to take the next step towards independence?

In the third grade, under the direct supervision of the teachers we alerted and prepared for, Masha herself administered the lunchtime bolus—counting carbohydrates, entering data on the pump, checking blood glucose (BG), and activating the bolus. She was not allowed to activate the bolus until the teacher verified that the data entered was correct. After lunch, the teacher sent me a text message to let me know how the day was going.

By the fourth grade, the need for testing has disappeared. Masha simply reported the indicators to the teacher – glucocorticosteroids, carbohydrates, units of insulin – and the teacher wrote to me. This helped me assess the situation and, if necessary, call the school. By the time Masha was given this level of autonomy, she was successfully coping with lunch routines, showing initiative, and solving problems with the teacher or with me when needed. She successfully mastered a number of skills and we were confident that she was ready for the next step.

With the transition to the middle classes, Masha, of course, wanted more freedom and independence .. She wanted to stay at a friend’s house for the night. She didn’t want to check with the teachers or with us during lunch. She wanted to go on a tour without her parents. She was ready to change her own infusion system. Sometimes she didn’t even want us to touch the pump – it was her property, something very personal, it was her “pancreas” after all.

Every time we give her more freedom, we try to point out to her once again that safety is the number one priority. If we are not sure about something, then we ask Masha to consult with us before performing any actions. As Masha approaches adolescence and feels the natural need for independence and freedom that comes during this period of life, our goal is to help her form the right behavior model that will help her in adolescence. We want to give our daughter social and emotional protection so Masha feels like she has help, love and support when she needs it. With this disease, there are no guarantees, and, unfortunately, the margin for error is very large. Control should be carried out in the best possible way and around the clock. The process of trusting your child to control and manage their own diabetes is quite emotional and scary. But you can do it!

Here is our approach:

• We believe in our daughter and we are sure that she will do well. She should try to show us that she can take responsibility and do everything on her own, but if she sees and feels that deep down we have confidence in her, she will believe in herself.
• Make sure we are confident in the safety of our child. Diabetes management won’t always be perfect, but safety is important!
• Ask to participate in the process and be aware of other adults who are responsible for the child. Explain what diabetes is.
• Start with small steps and gradually move to bigger ones.
• Try to control your emotions and sometimes restrain yourself from excessive control. Make sure you have enough consumables. We use the “three-hour rule” of checking on Masha about every three hours to make sure she is safe, unless she is at a school where adults know her well and can help her if needed. Organization and preparation help us to give Masha more freedom.
• Give your child the opportunity to learn and receive support from other people with T1DM. Summer gave Masha a lot – new friends, opportunities for independence and incredible support and confidence. In addition, we try to attend SD1 discussion events periodically and participate in SD1 discussion groups. Simple communication and new acquaintances of Masha with children of different ages with DM1 instilled in her even more confidence from the very beginning that everything would be fine.

Perhaps your approach will be completely different, because, as our wise endocrinologist said, “the first type is always a trial and error path.” In our case, there were many trials and many mistakes, but we continue to move forward, doing everything possible for Masha, so that one day she will be able to take care of her health on her own.