Raising a child with diabetes make life interesting, to say the least. My son was six when he was diagnosed. No one in the family had diabetes so we were clueless. It was learn as you go. When I got the phone call from the doctor’s office telling me that they found ” a little sugar in the urine” I was terrified and asked what I should be doing. I was told that it was no big deal and I could wait the weekend to make an appointment with a specialist. Wrong, wrong, wrong. We got an immediate appointment and after doing what he needed to do, the doctor told us to take Jim directly to the hospital. Do not go home to get his pajamas or favorite stuffed animal, go now. So much for it not being a big deal.
The hospital staff was wonderful. They did everything they could to make Jim and his frightened parents aware of what was going on and kept us informed of what they were doing. Learning that he would need insulin injections for the rest of his life threw us into a new panic. I had already been giving him allergy shots several times a week, so I knew how to do that. It was just so scary for Jim. All new rules of what to eat and how often to eat and new dangers to watch for. We were not allowed to take him home until we attended classes to learn what we needed to know to keep our son alive. So it began.
Jim had allergies to artificial ingredients in foods, among other things, and took shots at home. One doctor said no pure sugars, another said no artificial sweeteners. Our first lesson in making a judgment call. In a short time we gave up the allergy shots, mainly because we had to fight Jim every time. He clearly stated that he knew he had to have insulin every day to live, but he could live, even though uncomfortably, without the allergy shots. We talked to his diabetes doctor and it was agreed to end the allergy shots.
Sending Jim back to school after being diagnosed was scary. He had to eat several snacks during the day and arrangements needed to be made for that. We had also been told to be certain that every single person at the school who would have any contact with Jim be informed of his condition and what to be aware of… teachers, office staff, custodial staff, lunch room attendants, playground monitors, bus drivers, and his classmates. We spoke with the school principal and stated our needs and he was thoroughly cooperative.
When we moved 200 miles south, we found the same cooperation in Jim’s new elementary school. We even helped to establish a new rule there. When a child needed to leave the classroom to go the nurse’s office, the procedure was to just tell him to go. After Jim was sent on his own one time and was so disoriented that he wandered all over the building, the rule became sending another child with the sick one. I have always appreciated the cooperation we received from elementary school staff.
On the other hand, once Jim reached junior high it was a whole new ball game. The principal did not understand diabetes, nor did he want to learn or cooperate with our requests to make Jim’s condition known to the staff. The only one who had a clue was a neighbor boy, Steve, who was in the same class as Jim. The day came, as we knew it would, that Jim needed to eat lunch now. Not in a few minutes, not wait in line, but now. Jim and Steve went to the lunch room and told this fact to the woman who job was to take money and send the kids through the lunch line. No, she said. He’ll have to wait in line. They tried to explain again, or at least Steve did, because about that time Jim’s head crashed onto the woman’s cash register and he slumped to the floor in a seizure. Thank God Steve knew what to do because no one else there had a clue. Jim has a sense of humor and later said that he sure knew how to cancel lunch; no one had much appetite after seeing him flop on the floor like a fish out of water.
I would like to say that things went well at school after that but that wouldn’t be true. I recall one of Jim’s teachers telling me that while Jim had been on his way through the hall to get some juice for low blood sugar, another teacher had told him he had to go back to class. Fortunately, the first teacher happened to be passing and sent Jim on to where he needed to go. He also suggested that I insist that the principal allow this. Well, no matter how many times I tried, how many notes from the doctor, I always found resistance. We got through those two years, but it shouldn’t have been so difficult.
High school was a bit better. They already had heard about Jim. And like I said before, we learned as we went along. We were fortunate to find an excellent doctor for Jim when we moved south, Dr. Sam Wentworth. He taught his patients that they were responsible for their disease and for knowing when they needed food or extra insulin. That even though they were kids, they still should be heard. By the time he reached high school, Jim had that concept down pat. When he needed to eat or use the rest room, something that comes on quickly for some diabetics, he would make his request and if it was denied, which was rare, he went anyway. And his parents agreed with his decisions.
What I’ve learned as a parent of a child that has special needs is that I have to make myself heard and understood. Finding the right doctor is the most important thing for the child. Sam Wentworth allowed the kids to give their input in their health care. He listened to them and answered their questions. He told them flat out when they had screwed up and what would happen if the screw-ups continued. He told us, as parents, what we needed to do, or do differently, to give our kids the best care we could. And he told us, and the kids, to speak up if something seemed wrong. I recall a time that Jim, about nine years old, was in the hospital and told the nurse that his evening snack was not sufficient to keep him from bottoming out during the night. She disagreed. He phoned me at home and asked me to please tell her that he knew what he was talking about. I did and the next day Sam agreed.
Jim went to summer camp for diabetic children for several years and every year learned more about his disease and how to take care of himself. Most years his own doctor, a leader in diabetic care for children, was there. Camp is where Jim first saw another child have a seizure caused by very low blood sugar and how it was handled. At camp he learned that he could do the same things other kids do if he planned ahead and paid attention to his body.
Jim was about 17 when Sam Wentworth told him that he would have to find another doctor. And he didn’t tell me, he spoke directly to Jim. “You don’t do what I tell you to do, so I’m going to use my time with kids who will listen.” Jim told him that while he would sorry to hear this, he respected his decision. But what Sam didn’t know then, and doesn’t know now, is that Jim was listening. Kids don’t want to be different and having a life threatening disease makes a kid different. Once they hit their teens and rebellion begins, parents can only hope that they remember what they’ve been taught. Sam’s teaching gave Jim a good foundation for taking care of himself. At 34, Jim has no complications from his diabetes. I give the credit for that to the doctors and hospital staff who have cared for Jim over the years. They taught, he learned.
Jim works as a bartender and is the father and primary caregiver to five children. He loves to camp and before he had the responsibility of so many children, he went to hippie outings where he learned to be pretty much self-sufficient in the outdoors. No matter that he was an adult, I worried about him being a diabetic out in the middle of nowhere. I should have remembered that he had learned well. He let his traveling companions know about his condition, what to watch for, and what to do if a situation occurred. Same as in grade school.
Part of our job as parents is to worry about our children. When there are health issues involved, worry can reach marathon levels. The way to avoid that is to see that your child has a good understanding of the disease and good teachers to help him learn how to live with it. And if something seems wrong, speak up. It’s your child’s life.
