How does it feel to be the parent of your child?
When Jack was first diagnosed with Type 1 diabetes, I was honestly devastated. My husband and I first started noticing something was different when Jack was in Kindergarten. He started complaining about being increasingly thirsty. He was also urinating more frequently, and having accidents at school. This was not like him at all. At first, we brushed these symptoms off, tacking them up to a change in schools. Then Jack started drastically losing weight, yet he had an increase in appetite. He was also incredibly fatigued and grouchy. As a mother, I knew that something wasn’t right. As much as I wanted to deny the obvious symptoms that we were seeing in Jack, we decided to take him to the pediatrician. The doctors were amazing, and understood our fear and anxiety. They did a series of blood tests on Jack, and after waiting for the results, our fears were confirmed. Our baby was diagnosed with Type 1 Diabetes when he was only 5 years old. When we first received this news, I was absolutely terrified. What would this mean for Jack’s quality of life? After doing some research, and talking to others, we discovered that Jack could have a very normal and healthy life with careful monitoring. At first, it broke my heart to stick a needle into my child, but we all had to get used to it. We even decided to use an insulin pump instead, which allows Jack to take more responsibility for his own glucose monitoring and insulin input without daily shots. I am responsible for educating everyone in Jack’s life about his needs. While Jack is still in elementary school, I know that I can directly control the majority of his diet and activities. I feel very anxious at the thought of Jack being an independent teenager. I can only hope that he will be responsible with his own health.
How is your child developmentally the same or different from other children at the various ages?
Jack’s Diabetes does not directly affect his academic or social development. As long as the teachers and school nurse are educated and accommodating with his needs, he can do everything that other children can. When Jack has low or high blood sugar, he can behave strangely. He becomes distracted and off the wall or fatigued and grumpy. When diabetes affects his behavior, he can be less likely to learn as well as when his blood sugar is normal. Physical activity is a bit tricky with Jack. In order for him to participate in physical games, his blood sugar levels need to be carefully monitored. If he is too active, his levels can rise. High blood sugars can result in a coma, and other scary side effects that can last a lifetime. Keeping this in mind is a constant weight on Jack’s mind. This in itself can separate Jack from his peers, but technically, he is no different developmentally.
What professionals/agencies do you deal with? What services are available to you and your child?
We quickly learned that the pediatrician was our best friend. We decided to attend CHOC (Children’s Hospital of Orange County), since they have the most comprehensive care and resources for children with type 1 diabetes in our area. We also became members of an online support community called Childrenwithdiabetes.com. This community has updated information and data, as well as free resources that are helpful to parents with children that have diabetes. At Jack’s school, he is designated as a 504 student. This means that he is considered a special needs child. By law, the school is required to provide Jack with extra care and attention that he needs to succeed. We were very lucky to be at a supportive school, but I have heard stories of parents that have struggled to get their child designated as a 504 student in a timely manner.
How did you find out about the above services?
Jack’s kindergarten teacher was the first person to let us know about the possibility of getting him designated as a 504 student. Other than that, we had to do a lot of independent research online to find reliable data and communities. We found our current pediatrician through recommendations and bouncing around until we were happy with the care that Jack was receiving.
What financial burden, if any, are you experiencing?
Diabetes can be quite costly. It requires multiple supplies used daily, such as insulin, syringes, blood glucose measuring devices, finger pricks, and in certain cases, insulin pumps or pills. There are also constant doctors and specialist appointments. Emergency hospital stays are also a constant possibility. Depending on individual cases, monthly expenses have quite the range. As a family, we have certainly had to budget accordingly for Jack’s medical needs. At first, it was very difficult to know what expenses lay ahead of us, since we were still getting used to all of the materials that we needed, and Jack’s diabetes was fluctuating more drastically while we were getting used to balancing his blood sugar. Now that he seems to be somewhat more consistent, it is easier for us to plan ahead. If my husband or I ever lost our jobs, Jack’s medical care might be compromised.
What other information do you want to share?
I would love for people to be more educated about diabetes. The name carries such weight, and many people tend to treat those with diabetes as if it’s some sort of debilitating handicap. People with diabetes can have very normal lives. If they take care of themselves, watch what they eat and exercise, they can have the same quality of life as anyone else.
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