Getting a grip on general guidelines for parents

The Big Diabetes Lie

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Parents commonly feel fear when they discover that their child has T1DM. The first step in overcoming the fear is to become knowledgeable about the diabetes. You can do that by attending a course on T1DM available in most local hospitals. Also find a diabetes educator and a dietitian with whom you feel comfortable (see Chapter 2 for tips on finding these folks). When you know that there are ways to prevent the complications of T1DM (covered in Chapters 4 and 5) and a broad range of treatments should the complications occur, you'll feel much more able to handle the challenges that come your way.

As a parent, you can do a number of things to ease yourself through the experience of having a child with diabetes.

^ Try to maintain a balance between good diabetes care of your child and overbearing control. If you try to control every blood glucose result in an attempt to achieve perfection, you'll rapidly find that your child rebels. He'll refuse his insulin, eat foods that aren't appropriate, and refuse to exercise.

^ Understand that anger is a natural response to the limitations that a child feels when he has diabetes. Discover the source of his anger by asking questions like "What makes you angriest about having diabetes?" and try to find a compromise that addresses his anger without sacrificing diabetic control. Sometimes it's even okay to sacrifice control for a short while in order to gain the child's support. For example, allowing him a small piece of cake on his birthday is a small price to pay to maintain his cooperation.

^ Be aware that neither you nor your child is to blame for the fact that he has diabetes. T1DM doesn't result from consuming too much sugar, failing to exercise sufficiently, or any other failure that you may imagine. (Turn to Chapter 2 to find out how T1DM actually develops.)

^ Don't overreact to a temporary loss of control over your child's glucose level. Control of the blood glucose may be lost temporarily when your child gets sick with a virus or encounters one of many other problems. When it happens, move on and try to restore the control as soon as possible without being judgmental and implying that the child was bad or did the wrong thing. A child who's really trying but gets blamed when things go wrong will quickly lose interest in trying.

^ Recognize that depression can occur in patients with diabetes. If your child's sleep is disturbed, if he doesn't want to eat, if his usual positive outlook changes to sadness and unhappiness, it may be the time to talk to his doctor about getting help. Maintaining good diabetic control in the face of depression is very difficult. Even if the child isn't depressed, a visit to a psychologist may be a valuable baseline to establish in case things go wrong later on; you can obtain a referral for a psychologist from your diabetes specialist.

^ Know when to begin turning over control of the day-to-day management of diabetes to the child. Previously it was thought that this should be done as early as possible. Now, doctors and other people in the know feel that the child shouldn't have control of daily diabetes management until he clearly understands how his lifestyle, eating, exercise, rest, insulin, emotional state, and more affect his diabetes. For example, when the child knows how a level of blood sugar combined with the amount of carbohydrate about to be eaten and with the kind and amount of insulin previously taken all play a role in the next insulin shot — and he can calculate the amount correctly — he's ready to assume more responsibility. When a child gets more involved in his T1DM control, he and his parents need to work out who's responsible for what part of diabetes management so that poor diabetic control doesn't result from confusion. The age at which you hand over some control is entirely dependent on your child and what he's ready for.

^ Make it clear that the limitations on food, exercise, and so forth are associated with living, not necessarily diabetes. Whether diabetes is present or not, you don't want your child to be obese, and you do want your child to be physically fit. By framing responsibilities as part of a healthy lifestyle rather than a diabetes lifestyle, your child will be much more receptive to eating right and keeping fit just like his siblings and friends who don't have diabetes. If he associates every limitation in his life with diabetes, he'll hate his disease and either ignore it or not do the things that are critical to good diabetes control.

^ Make sure that your children without diabetes know about the disease.

This is a great opportunity to find out what the "patient" knows by having him explain his disease to his siblings. (You can correct any mistakes.)

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