When you first learn that your child has a disability or a chronic disease, the news is often unexpected and can seem devastating. Many families experience a sense of powerlessness at the prospect of dealing with an unexpected illness and facing a future filled with unknowns.
As a first step to coping with your child's special needs, find out as much as you can about her condition and its care. The more information parents and children have, the less frightening the present and future will seem. Knowledge is empowering. It can help both you and your youngster feel more in control of, and less a hostage to, the condition you both must face. Information will also help you guide your child—and serve as her advocate—through the potentially complicated medical-care system.
The type of information you convey to your child should be appropriate for your child's age. You can gauge this best by listening to her questions. Studies show, for instance, that kindergarten-age children typically view illness as quite magical: One child, when asked "How do you get better from an asthma attack?" simply responded, "Don't wheeze."
Young children who have diabetes may sometimes attribute their illness to eating too much candy. Some youngsters believe they have become ill and been hospitalized as punishment for disobeying their mother or father.
Beginning at about ages ten to twelve, children begin to grasp the complex mechanisms that can contribute to disease. By the fourth grade, children tend to believe that germs cause all illness. These older children may be capable of understanding more straightforward information about their disorder.
Remember that as children grow up, their ability to understand information and assume responsibility for their own care increases. Every year or so, someone should check out what they understand about their illness, fill in the gaps, and correct misperceptions. All too often, the explanations stop at the time of diagnosis.