Parenting a diabetic child is spending sleepless nights pricking fingers and checking numbers. It is counting carbs for lunch boxes and writing them down for school nurses. Diabetes is running numbers in your head and double, triple checking them.
Diabetes is asking coaches to bench your kid. It is carrying around gummy bears and tubes of cake icing in your purse. Diabetes is forcing a juice box down a sleepy throat in the middle of the night.
Diabetes is constant planning ahead and inevitably, having to trust someone other than yourself with the life of your child. Diabetes is having to drop everything to rush to your child because there are certain things that others cannot do for them.
In 1897, the average life expectancy of a 10-year-old child diagnosed with diabetes was one year. While the discovery of injectable insulin, modern medicine, and equipment means that diabetes is no longer an absolute death sentence, the current statistics are still staggering.
More than 420 million people around the world live with diagnosed or undiagnosed diabetes. Even with the advances in medicine, more than 4 million people worldwide died from diabetes in 2017.
What’s even scarier to acknowledge is that despite treatment becoming more precise and successful, the rates of newly diagnosed cases of diabetes in youth in the United States is increasing every year. Type 1 diabetes diagnoses showed increases of approximately 1.8% per year from 2002 to 2012 in the United States. (source)
With these staggering numbers, there comes great likelihood that we’ll come in contact with diabetes at some point in our lives. Perhaps a teammate, classmate or friend of our child; perhaps a neighbor’s child, a niece or nephew.
And with that, we’ll come into contact with the parent of that child. Here are a few things that they’ll want you to know.
1 – “Don’t assume my child can’t participate in “regular” activities.”
Children with diabetes can participate in any and all activities that would be normal for their age. It may just mean a little more planning ahead and monitoring, depending on the activity.
Halloween and other holiday activities, as well as birthday parties and even sleepovers, can be enjoyed with monitoring and modifications. Knowing what’s on the menu ahead of time is always helpful; as are non-edible options as Halloween or gift bag treats.
Sports and physical exercise are not only acceptable but encouraged and helpful for children with diabetes. Outside of all the benefits that all humans reap by staying active, exercise helps keep blood sugar levels in a healthier range.
It also teaches long-term healthy habits that a child with diabetes will need as they grow into adulthood and a time in which they will manage their diabetes on their own.
While children with diabetes need to be monitored during exercise (as physical activity can cause hypoglycemia), they also need to know that they have the mental support from not just their parents, but also their coaches and team parents.
What can I do instead?
- Ask questions such as “What do you need to know ahead of time?” or “How can I help make this fun?”
- Be supportive of creative ideas, such as non-food treats when possible and perhaps adapt all treats so as to not call attention to the child with diabetes.
- Ask about the signs of hypoglycemia and hyperglycemia; parents will appreciate that other parents are looking out for their child.
- Be supportive of the child with diabetes in sports; keep in mind that witnessing the hesitancy of adults in allowing them to participate in a “normal” fashion may lead the child to doubt their own ability to participate.
2 – “No need to walk away when I’m pricking his finger or he’s giving himself a shot.”
The world of continuous glucose monitoring (CGM) devices and insulin pumps has greatly advanced, making blood sugar level tracking and insulin injects much more inconspicuous; however, not all children have them and sometimes even with them, there is a need for pricks and shots.
Many parents harmlessly believe that leading their child away with a verbal announcement of “let’s give them some privacy” is the respectful thing to do.
Here’s a little secret- it’s not! Leading your child away indicates to the child with diabetes that they should be embarrassed about the need to take care of themselves. It can also communicate to your own child that diabetes is something they should not speak about to their friend.
With a diagnosis that requires a lifetime of monitoring and treatment, comes a lot of emotions. Many children with diabetes feel isolated from their peers who don’t have to think ahead about what they eat, wear devices on their body, or stop something to check a number.
Children may also feel embarrassed about the extra attention they get or the CGM they have to wear. Normalizing the disease and what a person with it has to do to take care of themselves begins when we model it as adults.
What can I do instead?
- Even if the moment makes you uncomfortable, don’t show it! If the parent or child wants privacy, trust that they will initiate it and not wait for you to ask.
- Encourage your child to ask questions. Children are most likely to feel comfortable answering questions about themselves when their peers are the ones asking.
This not only increases your own child’s knowledge of their friend’s condition and how they can be supportive but also gives the child with diabetes an opportunity to decrease feelings of embarrassment and isolation.
3 – “Please don’t offer your unsolicited “quick fix” solutions to her condition.”
Type 2 diabetes is linked to diet, exercise, and weight. As such, insulin may be not needed if other areas are managed successfully.
Type 1 diabetes, however, is when the pancreas cannot make its own insulin, resulting in glucose getting stuck in the blood rather than making it’s way to the cells where it’s needed.
Type 1 diabetes is suspected to be a mixture of a genetic predisposition combined with something else (such as a viral infection); it cannot be prevented and is not treatable through diet control, weight loss or exercise.
Not having insulin available for management will most definitely mean eventual death.
What can I do instead?
- Just as we should encourage our children to ask questions, we should ask them ourselves! Most diabetic parents will welcome opportunities to educate those around them- it not only helps to normalize the disease but gives a sense of security that other parents who come in regular contact with their child have the knowledge to help their child.
- Online research is helpful here too, but keep in mind that online research makes no one an expert. When children are diagnosed with diabetes, there is extensive training, educating, and teaching that the family goes through before the child can be discharged to their care. That training and the learning curve that comes with having to care for the needs of a diabetic child have no comparison to online research.
- Look here for a comprehensive and easy list of common diabetic terms. Other great resources include JDRF and American Diabetes Association.
4 – Don’t tell me you would never be able to do what I do.
There is no need to make raising a diabetic child more dramatic than what it already is.
The management of this disease is overwhelming; however, the result of not managing it is even more so.
Without diet control, counting carbs and insulin many children would only have months or days to live. The reality of the situation is always in the back of the parent’s mind
How do diabetic parents deal with the monitoring of their child’s disease? The same as you would if your child was diagnosed- you would figure it out because you have to.
That being said, parents of children with diabetes describe the experience of caring for their child’s needs as life-altering and all-consuming (source).
Professional and personal support is vital for a positive adjustment to a new lifestyle; but even with those support systems, many parents still describe sadness and stress.
What can I do instead?
- Parent to parent support best comes in the balance between avoiding overdramatization and being empathetic to the grieving process and emotional toll that a diabetes diagnosis imparts.
- Ask questions so that you can understand the disease and treatment.
- Do research to better learn terminology and ask how you can help. Helping may mean knowing how to identify highs and lows; it may also mean helping out with siblings during a high or low or simply being empathic to a rough night and showing up with a cup of coffee.
Diabetes is a life-altering diagnosis but is also one that now allows for a very full and normal life. How we relate to children and adults with this condition helps them cope better and live without being labeled by diabetes.