Q: We think we're doing a good job helping our son cope with his diagnosis, but the truth is, we can't really know what it's like for him. What do kids with type 1 diabetes wish their parents knew about what they're going through?
A: Having parents who want to understand things from their perspective is something almost every kid wishes for, so if it helps, you can probably consider yourselves a little ahead of the game on this one.
As someone diagnosed with type 1 when I was 8, I can tell you that I would want my parents to know, first of all, how much I appreciated the hard work they put into keeping me healthy and keeping diabetes as well-managed as they could. Even though I could not verbalize this gratitude at the time, in those moments when I was resistant to their efforts and grumpy about having diabetes, it deeply helped to know that they never wavered in their efforts to keep me safe.
With that said, however, most kids with type 1 (and I'm including myself here, though I'm now an adult) want their parents to understand that sometimes we just want to eat a doughnut, even though we know it will probably make our blood sugars go berserk. And sometimes we just want to throw our arms up in the air and scream because we're so frustrated with this disease and how trapped, consumed, and held back we can feel as we strive to maintain perfect blood sugar. Sometimes we need a break from all the rules of diabetes, and a good vent may be the fastest way to get us mentally back on track in those moments. Please give us the space to do this.
Another piece of the puzzle for parents to understand is that highs and lows aren't things to label as bad. Let's view blood sugar as data and not a judgment zone. In other words, a high blood glucose reading isn't bad, it's simply out of range. Asking us, "How can you bring it back into range?" is a much more empowering question than "What did you do?" or "Why did you eat that?"
Your son may also want you to know that diabetes is sometimes far worse for you than it is for him. My parents watched me deal with lows and highs and everything in between, and they still do now. But while I experienced the physical side of type 1 as a child, my parents experienced a tremendous amount of guilt over thinking that they should be able to control this disease. Truth be told, it's often easier for the child with diabetes to accept the disease and understand its implications than it is for their parents.
Finally, remember that kids with type 1 want to have a healthy, but FUN life, just like everyone else. Yes, we have diabetes, but we don't want to be owned by this concept of waiting for something bad (in the form of a low or a high) to happen. I know my mom always wanted to save me from this disease. By helping me to live a full and happy life, I think she succeeded. Go to a ball game, go to the movies, go on a hike -- do something with your son that has nothing to do with diabetes. And have lots of fun doing it. You may never be able to truly understand what your son is going through, but trust me, happy moments like this can go a long way in helping him through it.
--Kerri Sparling is the creator and author of one of the first and most widely-read diabetes patient blogs. Diagnosed just before she started second grade, she has been living with type 1 diabetes since 1986.
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