My first thought was, “Are you kidding me?” My 12-year-old daughter had just been diagnosed with type 1 diabetes. My second thought was, “How is this going to limit her independence?”
Managing diabetes is challenging no matter who you are. There is a diet component. Carbohydrate counting. Finger-stick testing. Proper insulin delivery. Body awareness to tell if you are feeling low or high with respect to your blood sugar. Math calculations. Shots. Typical children and adults can struggle when faced with what seems the overwhelming requirements and change in lifestyle type 1 diabetes brings.
And then there was Amanda. Not only did she now have diabetes, but she also has Down syndrome. If typical children have difficulty, how was my child going to be successful and independent with this new diagnosis?
It was daunting. Amanda and I sat through our diabetes training bleary-eyed and cranky. We had just spent the night in the emergency room. I was working on no coffee. Amanda’s blood sugar was still not in the normal range. The trainers were very pleasant as they demonstrated how I was to torture Amanda with finger pricks and needle sticks at every moment of her life from now on.
Amanda did not care that the needles were “ultra fine,” or that the finger pricks were quick. She hated it all, as did I. We went home with instructions, a stack of prescriptions, a sheet of Joslin Diabetes Center contact numbers, and the fear that a wrong move could result in coma or death.
The first few days were rough. I would compulsively check and recheck my calculations before trying to give Amanda a shot at each meal and bedtime. Every time she would see me coming with a needle she would drop to the floor and roll around crying. We both felt out of control.
The first breakthrough moment occurred at lunchtime on the third day post-diagnosis. Before she knew what was happening I had calculated the amount of insulin to cover her lunch and given her the dose. She saw the needle and hit the floor, about to cry. “Amanda, I already gave you the shot.” She looked at me, stunned. “Oh.” The shot, drop, roll and howl was no more.
My next step in the right direction was including Amanda in her diabetes care. She became the “checker,” making sure I was giving her the correct insulin and dose. She required two types of insulin: short-acting Novalog to cover her meals and long-acting Lantus at night. The Novalog is in a small bottle. The Lantus is in a taller one.
Other than that, they look the same. I lived in fear I would accidentally give her a dose of Novalog at night by accident. That would be bad. To help alleviate my Mommy worry I began having her make sure I was giving the correct insulin.
She enjoyed being the checker. I would test her to make sure she grasped the difference. I would also have her check the amount I was to give so she had an idea what she was receiving and which insulin went with which time of day. This gave me peace of mind. More importantly, Amanda was becoming a partner in managing her health.
When Amanda was 13 she had to give a “how to” presentation in school. Her teachers suggested “how to kick a soccer ball,” or “how to do a cartwheel.” Both Amanda can do, but neither was very exciting. I sent a note, “Can she do how to test your blood sugar?” “Yes” came the response.
I began coaching Amanda on the steps testing requires. Open the kit. Put a test strip properly in the meter. Take a lancet, remove cap and place in poker. Make sure the poker is on the correct setting. Poke your finger. Pinch enough blood out and place it on strip. Wait for your number and report it to the nurse or your mom and dad. This took patience, practice and fine motor skills. She did a great job. She was now responsible for doing her own testing at all meals and bedtime.
The summer Amanda turned 14 I was introduced to the concept of the insulin pump. I was hesitant. I had finally become comfortable with how we were living our lives with Amanda’s care. Her doctor pushed me toward the pump, saying the technology was moving fast regarding diabetes management and Amanda needed to be using a pump to be eligible for what might come next.
I reluctantly went to the pump class, not sure it would help our situation. It became immediately apparent it would. The pump took the math calculations away. That was the one piece I felt Amanda would have difficulty grasping. It was necessary when giving shots. With the pump she could test her blood sugar and enter the carbohydrate number associated with her meal into the computer. The computer would calculate the appropriate dose she needed and, once confirmed, the pump would administer it.
She had already proven she was able to test herself. She had proven she was very responsible with reporting her carbohydrate number to us or the school nurse. With the cognitive needs of the math and fine motor skills associated with the shots taken away, she could do it all herself.
Now, our roles are reversed. Amanda has gone from “assistant” to manager of her diabetes care. I have gone from controller to overseer. I was wrong to have doubted Amanda’s ability to take control of her health. As with other accomplishments that seemed out of reach, I needed to take things a bit more slowly. Independence is not an immediate state of being. It happens over time. This is the same for all children regardless of their abilities. And also for us moms.
Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs and publishes the blog www.momofmanyneeds.com.
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