How to Talk to Children About Diabetes
The best tips from medical experts and people who've been there
|George Simmons with son George, 16, and daughter Gillian, 13.|
It's a parent's natural instinct to want to protect a child. That's all well and good when it comes to a flu virus or the third-grade bully, but things get a bit tricky when diabetes is involved—your diabetes.
Reflexively, you may want to shield your kids from the truth. After all, learning that a parent has a disease is never easy for a child. But it's also pretty much never a good idea to lie. So, how do you describe diabetes without scaring your kids? Read on for tips from both medical experts and parents (and grandparents) with diabetes.
A Way of Life
If you were diagnosed with diabetes before having children, your kids probably won't be surprised by your testing, injecting, and eating habits. "I have diabetes. I've had it for a long time. My kids grew up with it," says Jean Betschart Roemer, MN, MSN, CRNP, CDE, a pediatric nurse practitioner at Children's Hospital of Pittsburgh of UPMC. "I don't remember ever having to explain it. They had awareness because of the routine of it. It was just what I did."
Because diabetes has always been a part of their children's lives, these parents may not end up having a formal discussion of the disease with their kids. "As they get older, they'll know that other kids' moms and dads don't do this," says Kathryn Gregorio Palmer, author of When You're a Parent With Diabetes: A Real Life Guide to Staying Healthy While Raising a Family. "There's never a sit-down [talk]. It's constant."
But as kids age, they may become more curious and ask you why you have to prick yourself, take shots, or eat candy sometimes. "When they asked, I would explain to them. I remember my son asking why am I making my finger bleed, and I said I have to check to see if I needed medicine," says George Simmons, who was diagnosed with type 1 diabetes 20 years ago and now has two children. "I never held back: I told them my pancreas doesn't work, and I have to put [insulin] in with a shot."
Using kids' questions as teachable moments allows you explain the disease without confusing or overwhelming the child. "If the child sees you taking an injection and is concerned," says Roemer, author of the American Diabetes Association's Guide to Raising a Child With Diabetes, "that's your open invitation to explain [that] Mommy has to take shots to keep her well. If she doesn't have the shots, she'll get very sick."
The Big News
It's a different story when you're diagnosed after the children are born. Because a diabetes diagnosis is a big change, kids may have immediate questions and concerns. Though you may be scared or anxious about your own diagnosis, it's best to remain calm when telling your children. "If you're nervous about it, they're probably going to be scared," says Roemer. "Kids pick up on anxiety. Try to be matter-of-fact."
If possible, bring your children to a diabetes education class with you so they know exactly what's going on in your body and how it's treated. If that's not an option (or if your children are too young to sit quietly through class), review what you learned with your kids. "There's no hidden fear because people aren't telling them anything," Roemer says. Whatever you do, don't brush off the diagnosis or keep it a secret. The fear of the unknown is scarier than an honest explanation.
In Case of Emergency
Whether you've had diabetes your entire life or just heard the news last week, you'll need to review emergency procedures with your children once they're old enough. Regardless of their age, kids should know that sharps are dangerous and that no one should ever play with your glucose meter, test strips, insulin, syringes, pumps, or any other diabetes medication or tool.
You'll also need to explain to your kids what to do should you go low. "One of the best things I did was get a box," says Gregorio Palmer, who has type 1 diabetes, as does her husband. The couple created boxes filled with necessities like glucose tablets. "If you say to kids, 'Mommy's low, get me a juice,' that's too much," she says. "If you say, 'Mommy's low, get me my box,' all they have to do is follow a simple directive. It takes a whole mess of pressure off the kid." But, warns Simmons, before you load your emergency kit with candy, remember that kids are more likely to eat it than glucose tablets or gels. There's also a chance your kids may drink your just-for-lows juice—even if you tell them not to.
When you're out and about with your children, say shopping or at the playground, you probably need a different plan. For times like that, Gregorio Palmer suggests creating a laminated card that says something like, "My mom/dad has diabetes. I think she/he needs juice. Can you help us?" A child can be taught to hand the card to someone in uniform, who might be able to locate juice or sugar in a pinch. And don't under-estimate how much your young child can help. "My son was probably 6 or 7 the first time he got my glucose tabs for me," says Simmons.
It's also important that your kids know when to call 911 if you go too low or too high. "If they ever see [that] Mommy or Daddy can't wake up or [if] Mommy or Daddy says they need something sweet, they [need to] know what to do," says Roemer. "Even young children can learn to call 911." However, young kids shouldn't be tasked with injecting glucagon for hypoglycemia, and some parents don't like to ask older kids either, since seeing a parent unconscious and having to administer medicine quickly can be traumatic. Whether or not your kids inject glucagon in an emergency is a matter of personal choice.
Later, after your blood glucose is back to normal, you can use the experience to teach your children. "I always give my kids an opportunity after my husband or I have a bad low to talk about it," says Gregorio Palmer.
|Denise Armstrong, with her granddaughters (from left) Maleah, 7, and Allyson, 9.|
How much you tell your kids about your diabetes will depend on their ages. While teens can understand the basics of glucose and insulin, younger kids can easily become confused. If you have very young kids, avoid the jargon and let their questions guide you. "Answer a question, and answer the question that's asked," says Gregorio Palmer. "If they ask what's that—in pointing to a blood glucose meter—they want to know what it is, not what it does or the importance of blood sugar testing."
As for explaining your disease, basic is better for young kids. "For kids, the message that I like is: [This is] something that Mommy and Daddy have to do every day to stay healthy," Gregorio Palmer says. As they get older, they'll start asking more questions—and those instances become your opportunity to describe diabetes. "You just have to be straight up and honest," says Denise Armstrong, who was diagnosed with type 2 diabetes in 2004. Since her children were adults when she was diagnosed, Armstrong explained the disease at once. She took things slower with her granddaughters, who were young at the time.
The same rules follow for diabetes complications. Younger children may just need to know that Mom has a problem with her eyes or that Dad's feet hurt. "You don't have to get into the gory details or what might happen but [say] I have a problem with my foot," says Roemer.
Being honest about the side effects of blood glucose swings is no different. If low or high blood glucose causes moodiness or brain fog, tell your children. "Being out of range blood sugar–wise can affect how you react to the socks on the floor or the kids wanting to borrow the car," says Gregorio Palmer. Understanding that mood changes are a part of your disease (and not a reflection of whether or not you love them) can help kids cope.
Regardless of a child's age, it's important to remain positive when talking about your health. While a child should know that your disease and its treatment are serious, he or she shouldn't be burdened with thoughts of disability and death. "It certainly makes the fear of losing your parent a reality if they're old enough to understand that," says Roemer. "Not being negative and trying to dwell on the positive and talking about all of the things that can help people is a plus."
The Genetic Component
Most children, at some point, will want to know whether they'll get diabetes. "At 9 or 10 they started asking, 'Am I going to have diabetes?'â¯" says Simmons. During a sit-down chat, he told his children that it's possible but not certain. Both type 1 and type 2 diabetes have strong genetic components: Children who have one parent with type 1 have a 4 to 6 percent chance of getting diabetes. When both parents have type 1, the risk rises to between 10 and 25 percent. A child with one parent with type 2 has a 14 percent risk for getting the disease. If both parents have type 2, a child has a 50 percent chance of getting it.
"I think it's important not to say, 'No, you'll never get this,' " says Gregorio Palmer. "We said, 'Chances are you're not going to get diabetes, but if you do, we know what to do.'" Within the past year, both of her sons were diagnosed with type 1. Looking back, she's glad she didn't tell her kids in certain terms that they wouldn't get it.
If lying is the worst thing you could do in this situation, Roemer says staying positive while being honest is the best. For parents with type 2 diabetes, she says emphasizing what kids can do to avoid diabetes prevents unnecessary fear. So tell kids, "If you have a healthy lifestyle and eat well, then you might not get it," she says.
From there, it's up to you to set a good example. "I have watched my mother, and she didn't take care of [her diabetes]," says Armstrong. "I decided right there that I was going to take control of it and set an example for my family. Because you can do more by setting an example than you can with words."
Telling your child about your diabetes may not be easy—especially a child who is old enough to worry about your health. But with honest conversation and an emphasis on the fact that diabetes is a manageable disease, you can prevent needless fear. "We're so nervous about scaring our children, but what's scarier is the unknown," says Simmons. "Let them know it's dangerous, it's serious. Literally, your kids could save your life. It's silly not to do it."