Type 1 diabetes – dancing with a Tasmanian devil

What is it really like to live every single day with type 1 diabetes? This blog is being turned over today to one of my newsroom colleagues who can speak frankly about it: She and her husband have firsthand experience with the ups and downs, the fears, the frustrations and triumphs of being the parent of a child with type 1 diabetes.

Type 1 diabetes is most often diagnosed among children and young adults and occurs when the body is unable to produce insulin. An estimated 3 million Americans – both children and adults – are living with type 1 diabetes; they account for about 5 percent overall of people in the U.S. who have diabetes.

By Gretchen Schlosser

It was March 2011, my husband and I had just been informed that our older son had Type 1 diabetes. Still in shock, we met with a pediatric endocrinologist at a major Twin Cities health clinic. We didn’t believe a word of it when the doctor said that his diabetes wouldn’t completely take over our lives.

“Really, once you get used to it, this will only take 10 minutes a day,” he said, referring to the blood glucose testing, carbohydrate counting and insulin dose calculating process that had to happen before any meal or snack and at least four times every day.

Twenty months later, the doctor’s statement has proven to be true. My family only spends a small amount of time every day addressing our son’s diabetic needs.

That’s not to say that the entire family didn’t work pretty hard to bring our heads and our hearts around to accept the changes in our lives. We had a steep learning curve to learn to accurately count carbs, recognize high and low blood sugars and give insulin doses. We also had to emotionally accept the rearranging of our lives to address his diabetes. Never mind the deep financial hole to fill due to his ongoing medical bills.

Plus, we had to realize – like so many families with kids with chronic health conditions – that our lives were always going to be different and that healthy people cannot or will not understand our situation. It was kinda like dancing with a spinning Tasmanian devil. A lot of people just stepped away because they felt uncomfortable being so close to something they didn’t understand or were afraid of.

November is diabetes awareness month. My goal is to help you help families of Type 1 diabetes (T1D) children experience as normal a life as possible. You can’t take away the child’s need for insulin and control his/her blood sugar, but you can:

– Replace pity with empathy. Ask questions and air your concerns — preferably without the T1D kid around to hear — with the parents to learn what to do to help the child participate fully in events and activities. The parents can give you full instructions and probably already have a written list for you to follow.

– Understand that it’s not about sugar! Diabetics count carbs and carbs are in almost all foods, except meat and cheese. Bread has carbs. Milk has carbs. Fruit has carbs. Veggies have carbs. If you’ve never read that far down the side of the cereal box, look toward the bottom of the nutritional label and you’ll see “carbohydrates” listed grams. That’s what diabetics use to count and calculate their insulin doses.

– Try to disconnect food from social activities. One of my biggest peeves is that our society does EVERYTHING with food, usually sugary cookies, bars, cakes, candy and sweet drinks. When you are the host of an event, ask yourself if people actually need to eat during the event and if the prizes/handouts have to be candy or sweets. What’s wrong with handing out pencils, erasers, trinkets and doo-dads instead of candy?

– If you are a family member or close friend of a T1D family, take it upon yourself to learn to count carbs, recognize high or low blood sugars and understand how to calculate an insulin dose. My child now has an insulin pump that automatically figures the insulin dose, so if other trusted adults in his life can count carbs and watch him push the buttons on his pump, he can hang out for the evening or have sleepovers at their house!

– Learn more about T1D by visiting the JDRF website at www.jdrf.org. The organization is a world leader in education and research to find better treatment and a cure for T1D.

– If you know of a family that’s dealing with T1D, pass on information about this support group. The JDRF-based group meets from 6 to 7 p.m. on the first and third Thursdays at the Willmar Public Library, beginning on Nov. 1. At this time, the meetings are for parents only. T1D parents and caregivers – I hope to see you there!

2 thoughts on “Type 1 diabetes – dancing with a Tasmanian devil

  1. Our son was also diagnosed as T1 in March 2011. He was 2 years old at the time. He just turned 4, and is happy and normal and active as any other kid. We adjusted pretty well to the changes, though we still have fears for the future because of how long he will have been living with it. But him being diagnosed at such a young age also made it easier to make the changes in his life, and he accepted them without fighting, and without many questions. He already knows his symptoms and he knows about carbs and insulin. Some things are trickier. Preschool is no longer about just signing up and dropping him off. I have to go to preK in the morning and at lunch to count his carbs, watch how much he eats and give insulin. I will possibly have to do this once he starts normal public school as well, as we live in a very small district that shares a nurse with other schools, but we’ll cross that bridge when we come to it. We’re already in communication with the school about it.

    It’s just a new normal. It’s amazing how quickly it becomes just as much a part of a routine as me taking vitamins and our oldest son using his asthma inhalers. You’re right, it’s the people who don’t understand and who don’t think ahead that make it a bit harder. I hope to see a cure, or a successful artificial pancreas in our son’s younger life, but I am thankful for the insulin that keeps him alive today, and thankful it’s simply a pen and not vials and syringes! Eventually he, too, will have a pump.

    Thank you for your topical message!

  2. I have two kids with T1D. I loved your comment about disconnecting food from social activities. This is a pet peeve of mine as well! Do we really need to have cupcakes and gummi worms at playdates? Rice Krispie Treats and Capri Sun after baseball? I think not.

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