Children mature physically and emotionally at different rates. With children with diabetes this creates a challenge for any adult involved with their care. This brings me to my point: when are kids emotionally ready to assume the full challenge of diabetes self care? And how does emotional maturity impact their physical capabilities for self-management?
A solid, well laid foundation is essential for building a quality home. Likewise, a strong diabetes "home" is built upon a foundation of self care skills and equipment. Yet insulin injections, pump infusion site changes, reading a food label or properly measuring a blood sugar level are just skills. Important, yes. But just skills. The true measure of diabetes self-control is not an individual action, like taking a shot. It's a series of choices. And quality choices require sound judgment.
Diabetes care is not an act, it's a skill. Hammering a nail or sawing a board does not make me a carpenter. Simply pulling a trigger is not the measure of a marksman. Diabetes care is best looked upon as like the relationship between a Master and an apprentice. But with children's diabetes the Master is usually a parent, who is more likely to feel more like an apprentice than does the d-child.
Many who have read to this point many will have developed divergent points of view. "My child can count carbs well" or "he does all his boluses himself", "he never misses a dose" or something similar to these statements comes to mind.
We all want our kids to be the best they can be, accomplish much, be kind to others, and contribute to the collective good. That's what parents do. But diabetes is not an ethical or moral device. Diabetes is a chaotic, variable, metabolic state, created by a progressive hormonal deficiency (insulin) which is not of anyone's choosing. Diabetes is amoral. That's just what it is.
So why must we adorn it with moralistic overtones? For example, a blood sugar value is simply a measurement collected at a specific point in time. The information itself carries no moral imperative or value. So why should we use terms like "good" and "bad" when discussing these values? Likewise, a hemoglobin A1C is just a number. Too often it is also characterized verbally (and in body language or facial expressions) as good, bad or their euphemistic derivatives "better" or "worse".
I have long been on a campaign to stop numerical shaming in diabetes. This must start at diagnosis. Discussing blood sugars and A1C's as numbers which may be "in range", "high" or "low" is about as judgmental as we should get.
Patients often rebuff the judgmental health care professional who lectures them or their child about their numerical data. I can understand why this is an easy path for docs to take. It can satisfy the provider that in some way they have "done their job" in "correcting" a patient's negative behavior. We call that medical paternalism.
Reach down further into that word "paternalism". Where does it originate? Parents, of course! Health care providers acting and speaking as parents to the inexperienced and naïve patient. Most diabetes patients reject medical paternalism in diabetes care. But stop and listen to how many of us talk to each other or our d-children about how someone else manages their disease.
Parenting comes with no true manual. We rely on the examples of others: within our family as well as outside of it. Medical paternalism will always exist in one form or another. Therefore our best defense is to state that it is everywhere and that we must do all within our power to halt or minimize it. I believe that starts at home.
The consequences of diabetes paternalism in the home is devastating. Anxiety, insecurity and fear are just a few of the emotions this gives rise to. Ultimately the behaviors which result include falsifying data, lying and outright oppositional-defiant behaviors. Open communication is lost and the family and child fall into a spiral of poor metabolic control and frequent visits to the hospital or Emergency Department.
My message is simple: stop judging the numbers in diabetes care. Use them as reference points for change. Diabetes control is not good or bad: it's a collection of ongoing choices and adjustments to an ever changing environment. Nothing more, nothing less.