Q: How do we explain type 1 diabetes to our recently diagnosed 7-year-old son? My husband and I don't even feel like we have a handle on all of this ourselves.
A: You might not have all the answers right now... and that's okay. In the early days after a diagnosis, your child needs honest, loving reassurance from you more than a scientifically perfect explanation of type 1 diabetes. Remember that your diabetes educator, doctor, and the rest of your child's diabetes care team are there to answer specific medical questions.
First of all, let your son know that he did nothing wrong to cause his diabetes. Type 1 is not something that you "catch" like a cold, and it is not something you can spread to others. As strange as this may seem to adults, when children hear "die" at the beginning of the word diabetes, they often take it to literally mean that they are about to die. We tell parents that children with type 1 diabetes need to hear the message -- from the start -- that life will go on as usual. Be clear in letting your son know that he can still take part in all the activities he enjoys and do the same things other kids his age can do -- just with more attention to detail.
So what will change? As you talk to your child about the need to inject insulin, count carbohydrates in food, and measure blood glucose, do so in language that he will understand -- and keep the focus on how these treatment steps are there to keep him healthy and strong. To explain why he needs insulin injections, I use the analogy that insulin is like a school bus that picks up the glucose and drops it off at different stops in the body (cells) that need energy. Insulin is medicine, but most children's experience with medication is typically limited to antibiotics and other medicines used for just a few days. Be honest that the need for insulin injections and checking blood sugar will continue, but understand that this concept may be almost impossible for your child to grasp right now.
Finally, even a very young child needs to know that he or she is not alone in dealing with diabetes. Make it clear that you will handle it together as a family, every step of the way. And then let your child do the talking! Listen carefully to his concerns, and do your best to respond. When you need to, say "I don't know, but we can find out." Follow up with your diabetes care team.
Every day with type 1 diabetes is a learning experience. Using this first conversation as a way to establish an open line of communication with your child makes it easier for you both to learn and grow together.
--Cynthia Pasquarello, B.S.N., R.N., C.D.E., Pediatric Nurse Manager, Joslin Diabetes Center, Boston, MA
Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.
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