So what's a parent to do, when being a hero without an ego isn't even enough? The answer is simple (and yet like everything in diabetes, not simple at all): Take control of your child's diabetes.
A Cry for Help
While your child, even a teen, may freak out if you suddenly insist on watching her each time she checks and seeing the blood hit the meter and the meter count down, don't fret. Many children who hit burnout are crying out for help. Like anything that's hard in life, we all want to do our best, but we all need support. There's a good chance, over the years, you've pulled away from constant support of your child. This may, consciously or subconsciously, have upset her. Your child could fear a future without you helping out, a life where she pictures herself on her own. Or, he could just not want to deal with the headache of remembering to check and bolus, counting carbs, and planning out a day.
Taking Back Control
When you do decide to take back more control of the daily care, be ready to stand firm. Set some rules: “You will check your blood sugar in front of me each morning, at the nurse each day in school, and in front of me at dinner and bedtime” could be a start, if things are really dicey. “I will watch you push the buttons on your pump” might be needed as well. Don't just set these rules arbitrarily. You and your child should sit down with a professional to work them out. In most cases, your medical team will be able to help you set fair rules. If necessary, you may need to think about your child's seeing a counselor or therapist. If this is the case, make sure you work with your medical team to choose one who understands Type 1 diabetes and the issues your child faces.
Changing Things Up
Sometimes, one of the best short-term ways to fight burnout is to change things up. If your child has been on shots for a long time, this might be a good time to suggest pumping. If she's been pumping for years, it's okay to suggest going back to shots for a while. Your child may say no to those ideas, but you'll be planting a seed in her mind that she does have some control (albeit small) of the situation. You can also ask her about food choices. “Are there meals you'd like me to prepare for you? Are there changes you'd like to make in your diet?” Together with your nutritionist, you can make just about anything work. Here's another change to ponder: If one parent has been the majority stakeholder in the diabetes care, consider switching to the other caregiver.
Ask your child, if there was one thing he could change about his diabetes, what would it be? Then talk to your medical team about his answer. They may have some creative ways to help your child change or adapt at least one aspect of his care. That will show him that everyone's on his team.
Okay, you read it. Now pick the book back up. It is important for parents to realize, as the years tick by with their child and diabetes, that children with diabetes can become perfectionists. Parents are constantly looking at what their body is doing and trying to coax it to do something else. They live by averages, A1cs, and yes, their parents' reactions to those things (see Chapter 5 for more insight into each of those). It's only a matter of time before a child takes on the need to please her parents, her medical team, and her diabetes all the time. While you never want to relax your expectations to the point of danger, you may want to remember that your child will be working at caring for this disease every hour of her life until a cure is found.
If you are a parent who has a child check more than seven or eight times a day, lowering your expectations might mean having him cut back to six, or even five. Your medical team can help you look at your child's schedule and come up with an agreed-upon daily care plan that cuts back but is still healthful and appropriate. Compromise may be your best friend here.
It's Okay Not to Like It
Your child hears it all the time: “You'll be fine once you're regulated.” Or “I hear it's a very controllable disease.” Or “At least it's not something life threatening.” We all flinch at those remarks, but to children who struggle and yet never seem to feel as though they've completely beaten diabetes, those comments can be emotional bombshells.
It's important to validate your child's discouragement. Rather than “Oh, come on! You can do it!” consider being honest, to a point, with your child. Diabetes is a difficult, all-encompassing disease that would burn out the best of us. Encourage your child to accept that truth, and then, challenge him to change it. Point out that in life, the challenging times make us who we are. Promise him to do all you can to bring him around. Never, ever, scold him or tell him he should be used to it all by now (plenty of strangers will have said that already). Instead, allow him to take ownership of a tough situation, and then lead him to a better place with it.