My four year old daughter has type 1 diabetes. She was diagnosed at the age of one and we have worked hard over the last three years to get the mechanics and routine in order. However, I feel we are entering a much more difficult time. She has been very upset recently about being different from other children. She is very interested in why she has diabetes while the other members of our family do not. She will be starting Kindergarten next year and will be meeting a whole new set of children. Do you have any guidance or advice on handling the emotional/social side of this disease?

As you know, diabetes management can be very overwhelming both medically and psychologically. Your daughter is asking a very good question, because she wants to know why she is the only one in the family that has diabetes. Unfortunately, we do not fully understand why that is the case. When your daughter goes to school, she may meet other children who have other disabilities (for example, a child in a wheelchair, a child with a severe peanut allergy, a child with autism, etc.). Your child may eventually want to teach the school class about diabetes, which can be very empowering to some children and can also help with feelings of isolation. However, your daughter will need to be comfortable with this and you may want to practice ahead of time about what you would say to the class.

Another way to support children with diabetes is with family involvement. Even though no one else in your family has diabetes, the rest of your family can still help with diabetes management and work together as a team. Another idea is to join a local parent support group and maybe you will meet another family in your area that also has a young child with diabetes. If your daughter meets another child with diabetes, it may feel less isolating. It may also feel less isolating for you to meet another parent that has a young child with diabetes and is going through these same issues. Also, when your daughter gets older, she may also want to consider going to diabetes camp.

I also think it is important to continue to keep the lines of communication open. It is great that your daughter feels comfortable asking you these questions. Young children need to know that they are safe. Four year olds can be very concrete – so some young kids think that because the first part of the word diabetes sounds like die – they think they are going to die if they have diabetes. Children need to feel comfortable asking these types of questions so they can get the right information. Also, it is important for you and your daughter to tell her health care team about some of the things that make her feel isolated. For example, kids with diabetes do not always like it if they have to eat snack at a different time than their peers because their insulin is peaking. In that type of situation, the school may be willing to change the snack time for everyone. These are the types of scenarios that her health care team should be able to help you brainstorm about. Finally, some families find it helpful to meet with a counselor (psychologist or social worker) about diabetes related stressors. Her health care team may be able to refer you to a mental health counselor that is knowledgeable about diabetes.

DB