Type 1 diabetes takes over so much of your life when you are diagnosed as a kid
and a big part of your independence goes away, especially if you are super young. Type 1 is a super personal, intimate disease, and as someone who has lived with it since I was 5, I can tell you there were moments where I wanted more ownership and moments where I wanted less discussion. Before I get into it, I want to make it clear that yes: a parent has to be a parent. Actions have to be taken to keep your little one safe and I KNOW and appreciate that. At the same time, there are areas where you can be extra aware of making sure your child knows you respect their feelings around type 1 and that it isn’t YOUR disease living in THEIR body.
Some thoughts:
Of course many of these varies by age, take what works for you and leave what doesn’t :)
Your child is likely processing/accepting a diabetes diagnosis at a different speed than you. That means they might want to talk about it more or less than you — follow their lead.
Your child might not want to tell new people about type 1 diabetes even though you do. Some people need to know (teachers, etc), but can you ask your child next time you are at a birthday part if they WANT to share with their new friends or not? It’s okay to not want to talk about it all the time.
Your child might not want to show off their devices in public. That doesn’t make them less strong — honor it. Let them show them off in their own time.
Your child likely wants some control over this already uncontrollable disease. Can you let them decide where their next CGM site will go? Can you let them take part in the tubeless vs. tubed decision process?
Your child might not be hungry when it’s time to treat another low blood sugar. Can you let them choose what low snack they want in that moment?
Your child might WANT to help count carbs at dinner or they might want you to do it! They might want to press the buttons on their pump to dose or they might want you to it! Personally, I wanted to be in charge of as much diabetes stuff as possible at a young age. It was in my personality to do so! This gave me some ownership and purpose around it. I know it might feel like you are “taking their childhood away”, etc, but remember, this is their disease. Respect their relationship to it!
One day they will be handling it all on their one as hard as that may seem in this moment. You can prepare them by helping them build a healthy relationship with diabetes by allowing them to take part it in the way THEY want to as they grow up.
-Raquel