If your child has had diabetes for a number of years, you may have been lulled into a sense that she is one of the few who will never struggle with the disease. If your child is new to diabetes, you may hope that his lifetime of cooperation and good deeds means this will be a snap, too. But often, attitudes change and so does self-care in diabetes.
For kids who have been dealing with diabetes for a long time—say, more than four years—the teen years can be particularly difficult. You start with the public perception (“Oh, she's had it for so long; it must be second nature by now”) and add the fact that teens just don't like to conform to much of anything an adult suggests, and you've got a tricky diabetes situation.
Part of the issue can be, as discussed in the last chapter, burnout, but it can also be your teen wanting to conform to her peers. Let's face it, all kids grow past that phase of always wanting to please you (and other important adults in their lives) to thinking they know just a wee bit more (okay, a whole lot more) than anyone else. When that mind-set comes into play with curfews or homework habits, it can be stressful enough. But when it has to do with managing a life-threatening disease, it's a whole new level of worry for parents or caregivers.
Noticing a Change
You start to see the shift, usually, toward the late part of the middle school years, just about the time teens are truly becoming teens.
The girl who once simply clipped her pump to her belt buckle and let it hang out there now painstakingly finds ways to hide it. The boy who whipped out his meter on the sidelines at Little League now wants to check only in the car and not bring his meter with him. Kids who once simply complied with your every order (do a bolus; check your blood; treat a low) begin to question or, even worse, avoid you.
The worrisome part about teens who have had diabetes for a number of years is that they've learned the tricks of the trade. It takes a few years to start contemplating how to trick your parents and even your equipment when it comes to diabetes. Most newly diagnosed teens don't consider manipulating a meter to show a different number or not to check at all, yet long-timers have been known to do this.
A first sign of manipulation is when a child suddenly does all bolusing and checking out of your sight. This secrecy is often a sign that your child is experiencing burnout. Keep a watchful eye on the process, particularly in the teen years.
Long-timers, too, may suffer from the rest of the world being “over” their disease. If in their first years friends donated to their “walk to cure” team or offered to help, that support may have waned because, even though there will never be a “remission” or a letdown in their fight, the rest of the world tends to move on. If this is the case, try to find a new way to make your child feel as though people care. (See Chapter 20 for more ideas.) This feeling that the rest of the world has moved on could lead your teen to feeling as if he should move on, too, when in fact, diabetes never gets easier. Rather, it just changes.
Kids with diabetes debate all the time whether it is easier to be a teen who simply does not recall what it's like to live without diabetes, or to be older when you begin this new life? It's almost like the quandary of the chicken and the egg. Some teens think that if you don't know any different way of life, it has to be easier to accept, while others say that not knowing any different way makes it harder to accept. Whichever side of the discussion you come down on, everyone agrees that adapting to a new disease and new lifestyle smack in the middle of the teen years can be rough.
If your child is diagnosed as a teen, make sure you learn to give shots and blood checks as well, even if your teen never wants you to do it. Even if you never give one, you need to understand the process to help make it better for your child.
First off, your teen is not in your constant care. While a small child with diabetes tends to be in the capable hands of a caring adult at all times, teens are more on their own. They're at sports practice, hanging out with friends, or just in their room with the door shut. They're beginning to create their own world, and the invasion of the D-Parent chanting, “Are you low? Are you low?” can be a shock.
Younger children are more willing to share their story with the world, too. You really cannot come into your child's middle or high school to do a cute show-and-tell on diabetes using a teddy bear and a children's book. (Well, you could, but your child would never speak to you again, and other parents would think you were nuts.) Your teen won't want to scream it from the mountains (or possibly even whisper it at the lunch table), and yet, people need to know. So, spreading the word of your teen's new diagnosis can be challenging.
Can my teen keep diabetes a secret?
This is a dangerous situation and needs to be addressed. The people around your teen—her friends, teachers, coaches—need to know she has diabetes. If it is common knowledge, it is not a big deal. Insist on public knowledge.
Work with your medical team to find a compromise for your teen. Explain to her that once people know, it will be old news. Ask your team to explain that for her safety, people simply need to know.