Lisa Copen lives with rheumatoid arthritis and has written about parenting with chronic illness. She explains how to talk to your children about your diagnosis during the different developmental stages of childhood. "As a parent, if you become ill, your illness has a profound impact on the entire family system. In spite of your own increased stress, confusion, and anger, your children will look to you to maintain or return to normal family routines as soon as possible. If you, or your spouse, present an image of feeling overwhelmed or being consumed with the illness, your children will feel as if life is spiraling out of control.1
The time of infancy is probably the easiest in terms of knowing how to respond. The primary developmental goal is to establish trust. The child is completely dependent on the mother (or primary caretakers) to have their basic physical and emotional needs met. With love and nurturing, the infant (and older baby) will thrive and grow.
Adults generally assume that a baby is too young or unaware to notice a change in a parent or family. However, infants and babies are extremely intuitive and can sense when a parent is upset or anxious. Any change in daily routine can throw a baby into a fretful state. When crisis occurs, you may see the following behaviors: increased crying and irritability, changes in appetite and sleep schedules, clinging behaviors, and regression. Separation anxiety, which occurs routinely, becomes exaggerated. Treat regressive behaviors casually and return to a normal routine as soon as possible.
If your toddler asks a question about your illness, answer openly and honestly. A rule of thumb is never offer more information than the child has requested. Concealing the illness or whispering about what is happening will not help. Children always suffer more from the tension of not knowing than from knowing the truth. Allowing the child to act out fears and frustration through play or art is also an excellent help.
Preschool, ages 4-5 years, is the age of expansion. Preschoolers are ready to move out of the safety zone of the home and into a broader social arena. There is an increased reliance at this stage on magical thinking. To a preschooler, anything that happens, good or bad, is related to them and their behavior. If a parent becomes ill during this stage, the preschooler's view will be, "Mommy is sick because I told her she was mean."
In response to stress and change, preschoolers often present with extremes, either being all good or all bad. This is the child's attempt to maintain a sense of control and to feel less frightened. Regressive behaviors are likely to occur, especially with an increased reliance on a favorite security object (blanket, teddy bear, thumb-sucking).
To help preschoolers, it is essential to assure them that the illness is not their fault. Returning to a security object should be encouraged, rather than discouraged. Answer all questions honestly, including those about death. This is a good time to rely on books, which helps your child on working through complex and often frustrating feelings about illness.
The primary development goal of the school-age stage (6-10 years) is achievement.
The focus is school, outside activities, and developing strong peer relationships. Although the parents and the family are still central, the biggest concern is, "What will happen to me if you are ill?" This self-centeredness is normal. Although there is still some overlap with magical thinking, by the age of 8, children realize that illness may not be their fault. However, they are still not mature enough to remove themselves completely from the situation. The thinking now is: "If I'm good, mommy will feel better and things will be fine."
School-age children tend to show strong emotions in reaction to change. They may show anger at both parents: "Why did you let this happen?" They tend to have a lot of somatic complaints (headache, stomach pain, fatigue), especially when leaving for school. The child is often fearful to leave the ill parent; he or she often assumes a protective role. Earlier in this stage, children are fearful that if they leave, the parent may die. As such, preoccupation and fear of death may be common.
When attempting to help school-age children, it is important to recognize that angry outbursts are an attempt to grieve or release fearful feelings. The opposite reaction, denial, may also occur as the child hopes that the illness will just disappear. Children will have many more questions and concerns at this stage. However, only the simplest explanations need be given. Information that they don't understand will only frighten them and increase their anxiety. Questions about death must be answered directly. Evading questions leads to more fear.
Changes in school performance, either for better or worse, are common. It is essential to let the teachers know about the changes at home and to establish a feedback loop.
The final stage of development is adolescence. The primary goal is to develop a self-identity that is capable of independent action.
Adolescents work to achieve separation from parents and to become independent of the family system. This stage is a painful one for both parent and child, as both of them struggle in this journey toward separation.
Under normal circumstances, adolescents are known for their emotional volatility and moodiness. When a crisis occurs, you may see and hear even more expressions of anger, hurt, and confusion. The opposite extreme is also common—they may withdraw completely and not want to discuss your illness or their feelings about what's happening. There will be ambivalence about helping you. If you have an adolescent who is willing to do his or her part in helping the family, this will not extend outside the home. Fitting in and acceptance by peers will be much more important than appearing helpful to the family. It is normal for them to be embarrassed by the illness and not want to discuss it with friends or teachers.
This is an essential time for parents to fine tune their communication skills. It is imperative to listen to and understand the volatile outbursts of an adolescent. Accept these feelings without overreacting to their tone. Continue to set limits, rules, and boundaries, but keep the task of separation in mind. These outbursts are often fear-based.
At a time when they often feel out of control, teenagers cling to the hope that parents and family will remain structured and safe. Remember, even though he or she appears grown, your adolescent needs as much love and reassurance as your younger children. In discussions about your illness, be prepared to give much more detailed information, especially all the facts about the illness. A major concern or fear will be: "Will I get it too?"
Some adolescents (the withdrawing ones) may not want to hear about or discuss your illness. They may express anger or disappointment toward the ill parent. These behaviors serve to diffuse their own fears or feelings of inadequacy in controlling the changes that are occurring or may occur in the future. Honest and open discussion of your own feelings may help them to express their own feelings. One of the most difficult challenges for parents of the adolescent is to overcome the expectation that he or she will be mature enough to handle the situation and to provide support. In actuality, they are overburdened with their own concerns and too vulnerable to carry the additional adult concerns.
Cara Bauer says that her kids are well aware of her diabetes, and they understand to a point what needs to be done. She says, "They're sad I have diabetes, but they realize my routines with it keep me alive and healthy and here for them. They help me with snacks and such if I need it. A couple of times, my oldest daughter has needed to correct a kid who has made fun of diabetes, and I was very proud of her. I think my kids are more empathetic and patient because of it."
Cara says that her children have seen her get low and thinks that it is good for them to see that she's not perfect, and that sometimes, things happen that are out of our control. She says that the important part is learning to take responsibility.
Stella Biggs has two daughters, aged 7 and 5. She says that her daughters have seen the pump on her since the day they were born but didn't ask about it until they realized they didn't have one too. She says:
We didn't really talk about it until they started noticing the low blood sugars and could actually help me if I needed it. We told them, "mommy has a disease and that the pump helps her stay alive. She has to eat and check her blood sugar to keep her healthy." I'm not sure they really understand it yet, but eventually they will. Sometimes, they get mad at my diabetes, especially when we are heading to Disney and we have to wait until mommy's blood sugar goes up before we can go. They do get concerned, though, when "mommy gets silly." They know it is treatable and that I get better with juice, but I see the concern on their faces when I come back and they tell me they were scared. That just breaks my heart. I don't like to scare them, and I try my best not to scare them.
Stella says that her girls have helped her before when her blood sugar drops. She says, "I don't think you are ever too young to learn to care for someone, not take care of them—but to really care."
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