Last month, a study published on the Web site of the Journal of Adolescent Health found diabetes in teenagers to be a consistent source of family conflict. Both greater diabetes-related family conflict and greater responsibility for self-management in teens were associated with higher HbA1c levels and less frequent blood glucose self-monitoring. As teens got older, self-monitoring was less frequent, and HbA1c tended to be higher.
In response to these findings, we asked three people with personal experience with teenage diabetes to give advice about how to minimize and deal with the inevitable conflicts while managing diabetes as well as possible.
I was diagnosed at the age of 8, way back in the “Diabetes Dark Ages.” A time when people tested urine with test tubes and everything was off limits from a dietary standpoint. The best gift my parents ever gave me was not only allowing, but also insisting, that I be an active participant in my diabetes. They knew that if I didn’t take some ownership of my diabetes as a child, it would be a much more difficult transition to an adult woman who owned her diabetes. They started off small, by letting me prep my insulin bottles with alcohol swabs, and ever so gently rolling the bottles of insulin in my hand. My parents let me inject air in the bottle, and watched me like a hawk. Under their supervision, I learned to give my own injections at the age of eight. I have to say, when I first gave my own injection, it was one of the proudest moments of my life! I knew that if I could handle that, I could handle anything.
If I happened to be in the kitchen when my mother was prepping dinner, I was allowed to read the exchange list and pick a starch (bread, potato, or rice) for the meal. It was a little thing, but it helped me learn my exchanges (we didn’t count carbs back in the late 70’s/early 80’s) and it made me feel like I had a choices.
As I got older, I had issues of not wanting to test; I even fudged numbers when I was in high school. But it wasn’t because I didn’t want to test my blood glucose; it was more like I didn’t want to disappoint my parents with a “bad” number. The one thing I wished my parents had done differently was their reaction to high blood glucose. They were scared and upset, and I knew I was the reason for it. Like any kid, I wanted to remove the fear, so I fudged my numbers. As an adult, I can now see and understand the tremendous pressure they were under, but as a child/teen, I didn’t want to be the person causing them so much stress.
I encourage parents of children with diabetes to watch how they react in front of their children when they have a high or low blood glucose reading. Children with diabetes see the hurt in their parent’s eyes and hear it in their voices, and figure that if they change the number, they will make their parents happy. There are no bad blood glucose numbers; there are challenging blood glucose numbers. But even the challenging numbers act as a GPS system for our bodies, letting us know where are bodies are, and what direction they need to go. I think if children and teens can understand that (and know that their parents will remain calm), they will be more likely to test. Like many things in life, it’s all in the delivery!
Kelly Kunik, Type 1 diabetes for 30 years; blogger, Diabetesaliciousness, diabetes advocate and consultant
I would tell parents that it is very easy for teens to get locked in a secret world that the parents don’t know about. This happens with many issues common for teens: drug use, sexual activity, binge eating. But it is the same for managing diabetes. Parents need to create an atmosphere where it is okay to reveal mistakes and what is not going right, and the teen has to know that the parents can handle this information without blame or judgment. Parents should check in with their teen frequently and ask how their diabetes management is going. Then, they need to be prepared to hear the answer and take the attitude, “Ok, we’ll fix this together.”
Even though it is the responsibility of teens to eventually to assume control of their diabetes, they never should have to be completely on their own. Family members should ask, “Is there anything I can do for you today to help with your diabetes?” I would even say that ideally, everyone should eat what the person with diabetes eats. The whole family should be willing to make changes. In my family, there was an attitude that diabetes was my problem and I had to deal with it alone.
I once gave a talk to a hospital support group. People were talking about isolation and judgment regarding their diabetes. One man, who appeared to be in great shape, shook his head and said he never felt isolated or judged. I asked him to tell me what the earliest messages he received in regard to his diabetes were. He said that his doctor told him, “We will do the best that we can do together, and if anything happens, its no one’s fault.” This should be the attitude in families as well.
Susan Shaw, Type 1 diabetes for 41 years; certified hypnotherapist, www.myhypnotistsusan.com
Personally, I’ve found it essential that parents remain involved in oversight of their children’s diabetes, even if the child is old/mature enough to handle most of the daily self-management tasks independently. I usually recommend weekly parent–child meetings to review the previous week’s blood glucose records and strategize for improvement. And if self-management tasks are not being handled properly by the child, the parent must take responsibility to see that they get done.
Here are some other tips for parents that I gleaned from conducting support group meetings for kids with diabetes and their parents:
• Maintain routines to keep blood sugar in balance. This can be a challenge, because we all know about the odd appetites, habits, and assortment of activities that pervade kids’ lives. But the fact remains that kids thrive in a structured environment. Look for ways to have meals at consistent times. Play or exercise at regular intervals. Go to sleep and wake up at about the same times each day. Check blood glucose, take insulin, and change pump infusion sets on a schedule. The more consistent their daily lives are, the more consistent kids’ blood glucose levels will be.
• Hook your kids up with other kids who have diabetes. This can have potent effects; for example, when they see other kids using devices like pumps and continuous glucose monitors, they’ll develop an interest. When they see other kids checking their blood glucose before a soccer game, they’ll be more likely to do it themselves without having to be told. When they see other kids giving their own shots or changing their own infusion sets, they’ll become more comfortable at taking that next step. And psychologically, there is nothing like being around other kids with similar challenges, doing things together, to make you feel more comfortable.
• Involve your kid in his diabetes management. Many kids feel helpless when it comes to their diabetes. They didn’t ask to get it, and they certainly don’t like being told to check, count, calculate, bolus, record, etc., on a daily basis. Whenever possible, involve your child in the goal-setting and decision-making processes. With a young child, it might be as simple as having them choose which finger to prick, or what color to use when writing down blood glucose readings. With older kids, it could involve having them setting HbA1c or blood glucose targets, or letting them decide how much carbohydrate to have at their meals and snacks. Restoring some sense of control over their own lives is important for building commitment to managing diabetes on their part, and avoiding burnout and depression.
• Let kids be kids. When you have diabetes, numbers are important, but they’re not everything. You and your child have lives to live! Taking care of diabetes should not be a full-time job, and it should not keep you (or your child) from doing anything you want to do. From sleepovers to sports camps to adventure vacations, there are always ways to adjust so that diabetes can coexist with your chosen lifestyle. In most cases, it’s worth sacrificing a few tenths of a point on an HbA1c reading so that you and your child can enjoy life to the fullest.
Gary Scheiner, CDE, Type 1 diabetes for 25 years; owner and clinical director of Integrated Diabetes Services, a private practice near Philadelphia with worldwide diabetes management consulting services
Do you have any advice on smoothing family relations when a child or teen has diabetes? Leave a comment below!