Our child has a chronic illness. How can we help her cope with this throughout her life?
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.
Knowledge Is Power
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 10 to 12, 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.
Helping Your Child Cope
Stress is a part of life. It motivates us to succeed, but it can also interfere with life's joys and accomplishments. Children with chronic illnesses often deal with more stress than other youngsters. For example, they may have to cope with an imperfect body, frequent hospitalizations, painful injections, surgery, or even premature death.
A child with kidney disease who requires dialysis three times a week faces predictable and repeated periods of stress. A youngster with cancer, who must undergo repeated chemotherapy, copes with the fears and anxieties of each approaching treatment. A child with epilepsy may feel apprehensive about the possibility of having another seizure.
Unfortunately, there are no simple ways to help your child avoid these stresses. Here are some suggestions that may make the situation a little easier.
- Listen to your child. Whether she is feeling sadness, frustration, or rage, it is helpful for her to express her emotions. She should feel that she can share her thoughts and fears without your overreacting or becoming upset. Ask how she is feeling. Be available and supportive. Listen not only to what your child says, but also try to hear what is left unspoken.
- Inform your child about what lies ahead. Anxiety is often based on the unknown or on inaccurate presumptions about the future. Find out what your child does and does not know. Explain exactly what will happen during an upcoming doctor's appointment or hospital visit; if you are unable to answer all your child's questions, both of you should talk to the doctor. Do not expose a child to a frightening procedure unless she has been informed of it beforehand. Conversations with other children who have gone through the same experiences can be invaluable.
- "Rehearsal" can help children cope with frightening situations. Many hospitals can now arrange for youngsters to spend time in the children's ward before they undergo surgery or other procedures. These visits can familiarize children with the hospital setting and what to expect.
- Encourage your youngster to spend time with other children with a chronic illness.
- Frequently talk about the illness or condition so that your child feels comfortable being open about it.
- Emphasize your child's strengths – the things she can do well despite the condition.
- Help your youngster feel that she can be in control of some aspects of her situation. Try to find choices that can be given to her, such as which arm to have blood drawn from, when a procedure will occur, or what reward she will get for cooperating.
Children's capacity for independence varies from illness to illness and child to child and will steadily increase with maturity. If your youngster has diabetes, you may have to test her blood sugar level and make sure insulin injections are given regularly during her younger years. If she requires a special diet, you will need to supervise food choices and eating habits closely. At the same time, watch for signals from her that she is able to assume greater responsibility, and help her take on more of the management of the illness little by little as she grows up.
Some children avoid accepting more independence. Families may inadvertently foster dependency because they find it easier to maintain responsibility for their youngster's care, rather than teaching the child to perform certain tasks and relying on her to do so. Also, these children (like most children) may enjoy being the object of their parents' special attention. They may relish having certain tasks' performed for them, and may resist taking responsibility.
It is critical to help your child come to terms with her health condition and accept appropriate responsibility for caring for herself. Do not deprive your child of the important and rewarding experience of mastering day-to-day tasks; it can instill pride and self-confidence that can prepare her for adult life. Praise her efforts at assuming responsibility, and applaud yourself for having the wisdom and courage to let her take these very important steps.
Your Pediatrician Can Help
Discuss with your doctor your concerns and the limitations you think are reasonable for your child. Using your physician's input, develop some guidelines for sensible restrictions while also encouraging your child to participate in a diversity of activities. Parents need to recognize their children's changing needs and to plan for them. It is also important for parents to be educated and up-to-date about their child's illness and about new treatments and their effects.
Most children with chronic illnesses do well in school, develop appropriately and achieve their goals in much the same way that other children do. Most are healthy children who happen to have a chronic illness. While their illness may create certain difficulties, with the support of their parents most lead effective and exciting lives and grow up to become productive adults.