I was recently asked a fantastic question via a comment here on my blog, which I believe may have been posed to others in the DOC as well (at least, I know of others who have been planning similar blog topics). What was posed to me was this:
I have a question for all you young adults with type 1. I am raising a son with type 1 that has had it since he was only 16 months old. He is 8 1/2 now and I am starting to figure out ways to hand over some responsibility to him. The problem I have is that I have never had a disease that is a 24hr a day annoying problem poking at me. I am asking you all what things your parents did that you did not agree with or just flat out annoyed you and even maybe made you angry about having the disease in the first place. I want to support him as much as possible and educate him on the risks without running the risk of making him retaliate in the future. I keep hear about teenagers getting fed up and stopping the care they need. I even met a man that found his son dead in his sleep only 3 years after diagnosis. Please, please, please share with me your thoughts on how I can maybe share this burden with my son without interfering too much. I really want to be able to send him off to college with a clean conscience but I need help from the other side of the fence.
I have been thinking about this for several days now. I don’t want to give an answer that isn’t complete, yet I also don’t want to point out every little tiny detail I liked or didn’t like about how my parents treated my D. So here’s what I came up with:
The thing that annoyed me most that my parents did was to tell me ‘no’ in regards to certain foods. Even when I was old enough that an explanation could have been given (“Your blood sugar is already high. You shouldn’t have any ice cream now. Maybe you can have some later”), none ever was. I was told ‘no’ far too often. While I was using a sliding scale of Regular and Lente, which varies greatly with many CWD now who use pumps or more easy-to-adjust MDI/carb-counting regimens, I never understood the ‘no’s and I was often angry. I acted out by sneaking foods that I knew darn well I shouldn’t be eating. When my blood sugar would later be sky high I’d deny knowing anything about how it happened.
So, my advice: If a ‘no’ is warranted because for some reason a bolus for something just isn’t in the cards, at least explain to your child why you are denying them of something. Don’t let them feel confused by the denial for what they want. Be as accommodating as you can of their request, and then explain to them why you said yes or no. Help them understand how that food choice is going to affect their blood sugar in the near future. Discuss how they might feel if they eat something that might send them into a really high blood sugar and help them brainstorm other options. If they want whatever that food is, help them understand how to make that choice in a smart way – maybe by pre-bolusing a bit more, if appropriate. Or maybe by getting some extra exercise afterwards. Help your child see the whole picture – not just the yes or no.
This is where a lot of my own issues with rebelling come from – my parents didn’t take the time to explain things to me. If I requested something and was denied, I didn’t have any other explanation than ‘because I’m diabetic’. This led to a lot of bitterness and a lack of knowledge on how best to care for myself. When I moved out on my own I was excited that I could then start to make all my own choices in terms of how I was going to handle things…but I was ill prepared. I didn’t fully understand how my choices were going to affect me. I hadn’t had those things explained to me, and it took me a long time to figure them out on my own. In the meantime I was in and out of DKA. Had my parents better explained how foods, exercise, bolus timing, etc. were going to affect me I would have been better able to cope.
(Please don’t get me wrong – I’m not angry at my parents. They did what they felt was best, and I know they felt very overwhelmed by my D at times. However, their methods are not how I’d raise a child with D.)
So I guess it all boils down to communication. Communicate with your child about D. Explain things to him or her. Don’t just answer their questions – ASK them if they have questions. ENGAGE THEM. And let them know you think D is just as unfair as they think it is.