Having a Child with Type 1 Diabetes is Challenging, but With These Tips for Parents, It Will Get Better
Before my son became one of the millions of children with Type 1 Diabetes, and soon after he turned two years old, he began exhibiting a series of behaviors that he had previously not shown. He began asking for water at bedtime. Then he began crying out for water in the middle of the night. He began urinating constantly. He became withdrawn from social situations, clutching his sippy cup while standing in the corner watching his friends play. He became overly irritable.
After a few weeks of these symptoms escalating, my wife and I took my son to the emergency room where he was diagnosed with Type 1 Diabetes, also known as Juvenile Diabetes. The next 3 days were a whirlwind as my son was admitted to the hospital and we all received a crash course on caring for him. Overnight (literally) our life was changed. Our sweet handsome boy was now a sweet handsome boy that needed constant medical attention. Overwhelming does not begin to describe the feeling initially. A year-and-a-half later, with the assistance of a great team of doctors, nurses, friends, and family it’s still not always easy-going, but life is as back-to-normal as it can be.
Here are some tips for parents that are now finding themselves in the same situation that we found ourselves in.
1) Breathe, it's going to get easier
Over the next three days after the diagnosis we were faced with a constant stream of ER physicians, ICU physicians, endocrinologists, ICU nurses, diabetes nurse educators, dietitians, social workers, even a man that brought around a therapy cat for the kids in the Pediatric ICU. We took a crash course on the pancreas, insulin, syringes, Glucagon, alcohol pads, test strips, test meters, lancets, and carb counting. We thought we would never get this disease figured out.
The bad news is that we still don’t have this disease figured out. We never will. The good news is that we accept that fact, and every day we continue to learn how to manage his diabetes. Through setting a solid routine we have been able to take each little step one at a time. It’s just a fact of life that we will test blood four times a day and inject insulin four times a day. It is now second nature to keep a running total of the amount of carbs he puts in his body. The repetition of the daily regimen of care will help you get to the point that you can control the diabetes instead of it controlling you.
2) Call your nurse with every question you have
When the hospital discharged my son we felt like we had everything under wraps. Then we got home and realized that we still had so many questions that we never even knew to ask while we were in the hospital. We spent many nights on the phone with the diabetic nurse educators in those early days. Do not be afraid to call your nurses! The health of your child and being able to put your mind at ease about an issue that cropped up is more important than being worried that you'll ask a dumb question. If you get the feeling that your doctors or nurses cannot be bothered by your questions, then it's time to look for new doctors and nurses.
3) Get involved with your local diabetes charities
We were introduced to the Juvenile Diabetes Research Foundation and have had a great experience with them. Knowing that there are people out there trying to find a cure for Type 1 Diabetes is very comforting. The people in our local JDRF chapter are very friendly and make my son feel welcome at every event we attend. It has also been reassuring to meet other parents that face the same difficulties and challenges that we face. Also, participating in fundraisers can help you feel like you're taking ownership in the search for a cure.
4) Set boundaries, but don't leave your kids out of things
As a dietician once told us, a sugar-free cookie tastes bad, why would you give a two-year-old a cookie that tastes bad? While we want our son to know, understand, and accept that he is a diabetic, we don't want him to be left out of things. Do we want him to go to a birthday party and eat half a dozen cupcakes? No, but if it happens, we have ways of dealing with it. At his t-ball games a different parent each week brings drinks. Some parents are aware of our situation and bring a sugar-free drink. But if they don't, we will bring our own. That way, our son can still play with his friends, but not risk his blood sugar going through the roof. We never want our son to use diabetes as an excuse not to chase whatever dreams he may have.
5) Teach others how to care for your child
Having a kid gets in the way of a parent's social life enough as it is. A child with diabetes only makes things worse. Unless, that is, you can encourage others to learn how to care for your child. If you have parents nearby spend a couple of evenings with them and let them check glucose levels and administer insulin. Write down a step-by-step routine for them to follow to keep them from getting too overwhelmed. If you feel your babysitters are mature enough, invite them over for dinner and teach them the routine. Usually, we will feed my son dinner before going out on a date. That way the grandparent or babysitter does not have to do anything except keep an eye out for hypoglycemia. Keep in mind that not everyone will want to take on this responsibility, but most will. Utilize them so that you can still get some time away.
6) Communicate with your significant other
I can't stress this one enough. A child with diabetes can be a major stressor in a relationship. Keep in mind that you both have your child's best interest in mind. Double check that insulin has been administered, and don't get defensive if you're the one getting double checked. My wife and I made a rule that we're not allowed to get upset if the other asks if an injection of Lantus was given. This has kept us from feeling that there is a lack of trust in the other to manage the diabetes. Obviously, communication is a key to any relationship. You have to up your efforts when it comes to caring for children with Type 1 Diabetes.
Hopefully these tips for parent of newly diagnosed children with Type 1 Diabetes will help you as you start your new path in life.