Thursday, May 18, 2006

The Control Factor

I've been e-mailing back and forth with a lady who is struggling with her daughter's diabetes. Her daughter is 700 miles away, and the staff there will only follow the medical orders of the doctor. The doctor, however, won't do what the mother wants to do, and so everything is a mess, having to train the staff remotely on how to manage the daughter's diabetes even though the daughter generally knows how to do it herself, but they can't allow that.

This frustrates me. It frustrates me because we are in such a litigious society that people who know what they are doing and can take care of themselves aren't allowed to.

I remember back in my school days with diabetes that when I first started out, my mom and I would go the day before classes would begin and talk to all the teachers about my diabetes. We would meet with the school nurse. I would get special privilege to access the teacher's lounge fridge in case I had a low, where I had a stock of juice on hand.

But over time, I just stopped doing any of this. My close friends knew of my diabetes, but frankly, it was more work to involve the school teachers. They would try to take control of something I could handle just fine on my own. I wouldn't be surprised if a great many of my middle school and high school teachers never knew I was diabetic at all, since I never told them. I'd treat my own lows, test my own BGL, without school involvement. And, frankly, this is how it should be.

Today, things appear to be much different. Despite the vast improvement of tools at the fingertips of diabetic kids these days, such as pumps and 5-second glucose meters, there seems to be a fear to allow kids to have any control over their own lives. I've heard of cases where a student who is on an insulin pump isn't allowed to give their own boluses at meals during school hours, even though they manage it themselves outside of school. Frankly, its ridiculous.

I was not the slightest bit rebellious throughout my teen years...but if that's how the school system had expected things back then, I would have rebelled. Big time.

Parents of children with diabetes have a major task assigned to them. Probably the most important thing they can possibly do towards helping their child deal with diabetes. That is teaching their child to manage their own diabetes, without the aid of anyone else. Sure, there should be those who know how to handle the emergencies that might come up. But, in general, it is the parent's job to get their child to the point where the parent doesn't have to worry about their child's diabetes at all. (Of course, like any parent, they will worry...but that's another matter!)

My parents were like that. Every step along the way was a step towards making sure I understood how to treat myself. My mother constantly made sure I was aware of my lows, counting exchanges, etc. But there was a point where that "making sure" was from the sidelines. I was the one playing the game, and she simply became the coach, coaching when I needed it.

I think if a parent tries to stay in control of their child's diabetes too long, there comes a point where the child can become complacent, and expect others...including their endos...to do it for them. These children grow into adults who don't know how to manage their own diabetes.

We need to empower our children. My oldest son has rather significant food allergies (although, thankfully, he has outgrown most of them). Over time, we have been teaching him what to look for. Now, at age eight, he can quickly recognize when a food label indicates he cannot have that food. We double check, and at this point, 99% of the time he is correct. When we see that reach 100%, we know it is something we just don't have to worry about.

But control, in the case of diabetes, is always a huge issue. Everyone is fighting for control. The doctors, the schools, the parents, even the individual with diabetes. What is lost in all of this is that diabetes isn't something to be controlled. It is something that individual will have to live with for the rest of their lives. It is a balancing act, sometimes leaning to the right, sometimes to the left, sometimes almost falling, other times standing tall. My diabetes is just that. My diabetes. So keep your controlling hands off of it, please! Thank you.

3 comments:

Sandra Miller said...

Ryan--

This was an excellent post.

It's taken me a while to come to exactly the conclusion you provide here-- that "diabetes isn't something to be controlled." With all the highs and lows; the frustrating variations in how activity, stress, etc... impact my son's sugars, it's hard to imagine that truly controlling diabetes could ever be possible.

Tough realization when all you want to do is keep your child safe.

In a broader sense, though, helping a child cope with diabetes is not unlike raising children in general -- we cannot really control our kids (nor should we try), but rather we accept them for who they are. We teach and (hopefully) empower them so that they can grow to be responsible adults able to care for themselves.

If we can do that for our children with diabetes, then I think we've done a good job.

Scott K. Johnson said...

"My diabetes is just that. My diabetes. So keep your controlling hands off of it, please! Thank you."

Very well put. Great post!

BetterCell said...

Hello Ryan Bruner....I just came across your site and blog entry. I was very impressed with everything you had said and am in total agreement. There has to come a time where the "child" has to began taking care of his/her own illness(T1DM). This creates a self- responsibility that many people with and without Diabetes do not seem to have. You show great wisdom and clarity. Thank you for that blog entry.