After a long six-hour drive, I walked past the familiar fountain at the Children’s Hospital of San Diego. Was I really back at this place? Was history truly repeating itself? I checked in at the front desk, and rode the elevator to the second floor. In room 219 was my precious Riley. A wide smile spread across his face as I opened the door. “Hi R.J.!” I said. “If you wanted me to come for a visit, all you had to do was call. This is a bit over the top.” He giggled.
Education is the Foundation for Treatment
Spread across his hospital bed were stacks of pamphlets and paperwork. The process had begun. With juvenile diabetes, the goal is to educate the child and the parents. Diabetes is a complicated disease, involving mathematical equations, carbohydrate counting, and delicate body processes. A child cannot live or treat himself independently without comprehending what is happening to him, and what’s he’s supposed to do about it. This is why children with diabetes who are very young or mentally disabled require constant supervision and care. The disease and the treatment itself are both potentially deadly.
Fortunately, my Riley is nearly twelve years old, and is intellectually gifted. For him, we only needed to take the time to input the information into his brain and repeat a few times for clarity. His ability to take in data like a sponge makes his prognosis excellent. Ultimately, Riley will have to go out into the world knowing how to monitor his blood sugar levels, properly fill syringes, read nutrition labels, and give himself injections. The learning is ongoing, and much of it will take place through trial and error. It will also require tremendous patience, and a willingness to submit to the tedious routine of blood sugar maintenance.
This is no cold or flu.
The diagnosis of juvenile diabetes is a life sentence or a death sentence. It’s a life sentence of following these strict regimens of blood sugar monitoring, or it’s a sentence of death. That’s the harsh reality. 100 years ago or so, before insulin was made synthetically, people with diabetes slowly wasted away, literally starving to death, regardless of what they ate. Eventually, their bodies went into a coma, and soon died. The fact that we have engineered a way to compensate for the duties of the faulty pancreas is a true medical miracle. Yet, the regimen must be imposed.
Here are some ways to help children become more independent with their diabetic care:
- Provide an alarm. You can purchase a watch with several alarms that buzz when the child needs to test his blood sugar. There are also glucometers now that have alarms to remind children of times to test. I believe alarms are very important tool for diabetic children, because even responsible kids can simply get carried away and forget. Younger children will feel like “they” remembered when the alarm goes off. “Mommy, my alarm….” This is the early phase of training the child to remember for herself. A child who is allowed to be oblivious, where mom and dad are coming after her with needles, is not learning independence.
- Provide opportunities for education. While Riley was in the hospital, he said, “I’m learning so much, I feel like my brain is going to explode.” It truly is an enormous amount of information for a child, much of which is likely to get lost after going home. Make sure your child has access to books and movies about diabetes, and enroll him in classes at your local hospital. The more your child understands, the better. Refresher classes are a must.
- Teach the child to dose herself and have her explain each step. Even very small children can answer simple questions as you fill the syringe or set up the pump. “Why are we putting in seven units?” Quiz and reward your child. Give praise whenever the child demonstrates independent knowledge or responsibility. Sometimes it feels easier just to do it yourself. But your ultimate goal is to pass this torch to your son or daughter.
- Introduce your child to other diabetic kids. Contact the Juvenile Diabetes Research Foundation and locate camps, or other social opportunities for diabetic children. The realization that many other kids are dealing with this disease is a good self-esteem booster and motivator.
- Involve your child in research and in finding a cure. I’ve decided that now with two children having juvenile diabetes, there just is no excuse for us not to become more involved. You’re going to see our family in the “Walk (or Ride)to Cure Diabetes” programs and other communitiy activities. I also convinced Riley to donate a little of his blood to a doctor at the hospital who was doing a research study. “You have the opportunity to provide information that could lead to a cure,” I told him. “Other kids who come after you could benefit from that information. We all need to do what we can to cure this disease.” I told him the decision was up to him. He gave. That’s my boy.
Kristyn Crow is the author of this blog. Visit her website by clicking here.