just for kids

january 2001

Every year parents are told that their children may have a chronic disease like diabetes and the history of that family changes dramatically. I have, in the past, worked with families with children who have a variety of chronic diseases and was often taken aback by the platitudes offered to parents and siblings. The truth of the matter is that learning that a child who you adore has a disease that could potentially cut the length of his or her life, cause blindness, kidney failure and possibly learning and emotional disorders can not be passed off. I often wonder who writes things like "having diabetes should not prevent your child from anything", without adding that managing a child's diabetes is a family affair and that a child will do better on a daily basis if the diabetes is managed properly. Once again, this is easy to say and more difficult to do on some days or weeks. So let's look at some pointers to help you if your child develops diabetes. Our first thought to share with you is that guilt will get you nowhere but spinning your wheels. One of the early thoughts that occurs to parents is " What did I do?" To tell the truth, you did nothing. If we knew why your child developed diabetes, we could begin to really cure the disease or prevent it. How do you work on these thoughts? One suggestion is to learn about the Diabetes Prevention Trial 1 and the DAISY study. Enroll your other children in a study because studying siblings is a good way to explore ways of preventing diabetes. Enrolling your children in a study may not help your family, but it could help others in the future and you will be doing something concrete about a situation which can make you feel overwhelmed on some days. So how do you begin to cope? This is a hard one, and you will work on it for a long time, but it occurs more or less over the months and years that we help our children grow. It is what I tell adults to work on and that is to keep your identity as a family and not become the "diabetic" family. Help your child and siblings with common misconceptions that they may have. Do remember that children under stress may revert to a kind of magical thinking or developmentally still be in magical thinking because of their age. Santa and the tooth fairy live. Young children may have difficulty understanding the sudden changes in the family and the attention to their sibling who has diabetes. The diabetic child may think they are being punished for doing something bad. I have interviewed siblings who helped care for a diabetic sibling, who lived in great fear that if they were bad, or too close to the sibling, or some other magic thought, that they too would get diabetes. The child with diabetes may feel shame or guilt, both feelings that can debilitate a child. If that's not bad enough, your children may fear death from the disease, and although they may not understand the permanency of death, the idea can be very frightening. These and other thoughts have to be talked over and the truth has to be explained at the developmental level of your child and their siblings. Children tend to act out their feelings rather than talk about them. Some children become withdrawn, stop learning etc., others act out becoming angry at the very people they need the most. All children know that their parents are powerful and the fact that you can't make the injections, blood testing, hyper- and hypoglycemic events, etc., go away, is not understandable to them. To make you feel better, learn all you can about diabetes so that you are not surprised by things that happen. If you feel comfortable about the daily routine and minor complications, then your child will not overreact as often. Make a partnership with the physician and the health care team. You will need these people and they will need you to make sure your child leads a "normal" life. Get a list of whom to call. Have a phone number for emergencies that hopefully, you will never need to use. Join organizations that can help you understand what is happening in research and treatment like the JDF or ADA or both. Get involved in a group of families so that you have support and your children have a special social group. Being able to talk to someone who understands what you go through is an important part of your well being. Here in Tulsa, we have a Halloween party for children and siblings with live music, face painting, information for families, sugar free candy, fruit, games, prizes and an all around good time. We also have summer camp so that children can learn about all kinds of sports, glucose monitoring and control, play games and leave home in a safe way that every family member can tolerate. Also, get involved so that you and the family can, once again, do concrete things, to help find a cure. Little things mean a lot. Learn to give yourself credit for all of your efforts and make sure to do the same for everyone in the family. This is not mom and child's disease. When we have a child who is some how "different," getting that child on the elementary school soccer team can be more than just signing up. You deserve a hand for hanging in there and helping your child and coach understand signs to look for when blood sugar levels fall. I have read that parents should be optimistic because we are improving care all of the time. To this I say, hurrah! When I first developed type 1 diabetes there was no human insulin, and home glucometers were just being sold. My diet was high in protein, I took 2 injections a day, and I was told that diabetes would be cured in 10 years. That was more than 20 years ago and I now I take 4-5 injections a day and I am still waiting. Am I still optimistic? Yes, because I read the monthly medical journals and I now think that diabetes, like polio, will someday be a disease of the past, maybe not in my lifetime, but in my children's. I do not get overexcited about any research any more, because until it is replicated and trials are done, I will not see my daily routine change. When you are feeling overwhelmed, put yourself in your child's emotional shoes so that you can continue to respect his or her daily strength and courage in coping with a disease which makes life more complicated than his or her siblings' and friends'. Prioritize the things in the family's life together. Health is very important, but so are picnics, holiday parties, special times together with each child you have, bed time routines, plays, concerts, vacation etc. If you get discouraged, know that you are not alone. We all have times of feeling overwhelmed. If the feelings do not melt away in a reasonable amount of time, tell someone and get help, not just for your emotions, but to help you with the family. Sometimes, we look so capable, that others don't see that we are all facade and that inside we are crumbling. Family, friends, and even spouses can help lighten your load and give you time to enjoy your life. Finally, remember, that your child is a child, not an adult. Sometimes we get angry because a child forgets to care for themselves. At these times we need to concentrate on the other parts of this child as diabetes is only a part of him or her. He or she still has a personality that makes you love him or her. They learn, play, have friends, continue to grow and make you all of those cards and pictures that you collect. Children with chronic diseases can develop certain problems. Learn what they are. We certainly have articles on this web site about some of them. Get brave and read and learn. It's easier to work on these problems before they become exacerbated. Be an ombudsman for your child at school to make sure they have the best experience they can have. Work with teachers and staff to explain your child's needs. Make his disease inconspicuous at school . Not everyone needs to know when your child needs a snack in the afternoon, or when they need to monitor their blood glucose levels and take insulin. Know the law about your child's rights. We have articles about this on the web site for you. Feel free to take copies to school so that you know that they know how to help if needed. Remember that education will make others less worried. We all get into a routine and what was very frightening during the first days and months of learning to deal with diabetes, becomes something we do everyday and think about only peripherally when everything's going well. We've tried to give you some advice on how to begin to cope with the diagnosis of diabetes in your child. Certainly your life will be different if your child is 5 years old or 16 years old. Please contact us if you have specific questions and we'll try to answer you. If you have any ideas for future articles, also let us know. We'll start to research it and try to share the information with our readers. We wish you hope, support, and good days.