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Most parents never consider the possibility that their child will develop diabetes. Yet every year over 13,000 children are diagnosed with diabetes, more than all forms of childhood cancer combined. Every year 13,000 children struggle to learn diabetes control while 13,000 families fight against diabetes' control over their lives.
The initial symptoms can be deceiving. Mark and Katherine Swanson first noticed excessive thirst and urination in their son Troy at age 3 1/2 Pronounced fatigue followed shortly thereafter. "We knew something was wrong with our son but were unsure what to do," says Katherine. "I recalled a friend's story about her child's diabetes, and asked our doctor about the similarities. I considered this a long shot, since no one in our family has had diabetes, but I was desperate to find the source of Troy's problem."
Tests confirmed that little Troy did have diabetes. The Swansons now had a label for the problem, but what did it all mean?
"We knew nothing about diabetes," Katherine recalls. "We spent three days in the hospital cramming information. The more we learned, the more our fears increased. Perhaps our biggest concern was how diabetes would affect our family dynamic, and our three other children."
The onset of diabetes is a period of crisis for most families. Bewilderment, shock, anxiety, insomnia, guilt and even depression are common reactions to the diagnosis. Parents frequently experience an emotional reaction that resembles mourning during those early months. During this phase a family comes to terms with the chronic nature of diabetes.
"I have to focus on the many things my daughter needs today," says Trina, mother of a recently diagnosed 8-year-old girl. "If I think too far into the future, I become overwhelmed at the thought of having to do this every day for the next ten or more years."
A Life-Long Disease
Having a child or adolescent with diabetes presents many challenges and much stress for parents. Parents oversee blood glucose testing, insulin injections and reactions, food preparation and exercise, integrating all of these tasks into the rest of the child's active life. Achieving this type of supervision while fostering healthy physical, emotional and social development consumes parents' lives. In fact, many researchers agree that diabetes is unparalleled among pediatric chronic diseases. It requires significant family cooperation and interaction to effectively manage.
"All members of a family are affected by diabetes," says nurse clinician for pediatric endocrinology Nancy Levin, RN, CDE. "Even though only one member of the family is diagnosed, everyone must work together to make the necessary changes." These changes include food choices, time schedules, protocol for insulin reactions and frequent glucose testing. The family's success in working together to support the family member with diabetes often determines his or her level of effective glucose control.
The transition from initial shock to the development of an ongoing diabetes management routine typically takes one year. During this difficult period the family relies upon the communication, conflict resolution and problem-solving skills that they have always used. If these patterns are generally honest, expressive and respectful then the transition period will actually bring the family closer together through working toward a common goal.
In contrast, if a family's communication patterns are combative and not supportive the members often feel resentful toward the person with diabetes for the changes they impose or the extra attention they elicit.
Numerous studies have conclusively shown that families with supportive, nurturing relationships, as well as effective conflict resolution skills are more emotionally stable, and maintain better levels of glucose control. Even in stable homes, however, there is a strong tendency for diabetes to define the entire child.
"I am a person who has a disease called diabetes," states Wendy, an adult who was diagnosed at the age of 8. "There is so much more to me than my diabetes. I want to be seen by my parents and friends as a person first, someone who has a personality, dreams, talents, and many accomplishments."
Parents, fearing the worst in the early stages following diagnosis, often err on the side of being too protective. Psychotherapist Sandy Kemink, LCSW, diagnosed at age 8, says,"It's important that parents allow their child with diabetes to play and participate in age-appropriate activities. Prohibiting this participation not only makes the child feel very different from his or her peers, but it can also breed resentment toward the parent."
Precautions are appropriate but parents must emphasize that their child is normal but has an abnormal routine.
Diabetes confuses siblings. They typically do not understand their parents' concern. Their sibling with diabetes looks and acts the same, so what's the problem?
The finger pricks and shots do disturb siblings. "My three other children were initially fearful that they might 'catch' diabetes from Troy, and also have to take shots," says Katherine Swanson.
Parents must tell children the truth about diabetes because they will hear so many false rumors and stereotypes outside the home. Clearly expressing these issues in age-appropriate terms while inviting questions can greatly enhance sibling adjustment. They may even participate in the management routine. "My oldest son, Justin, now helps with both the glucose testing and insulin injections," says Swanson. "I think Troy's diabetes has helped all of my children to be more compassionate with other people's needs. For that, I am truly grateful."
The primary caretaker for a child with diabetes, often the mother, must also bear the responsibility for glucose management, doctor's appointments, ordering supplies and managing sick days.
"The first year following our son Brad's diagnosis was the worst of our fourteen years of marriage," says Sue, mother of three children. "I took on all of Brad's diabetes management simply because my husband wasn't home as much. I soon became overwhelmed, and began to resent my husband. After talking it through with him, I realized I had never asked him for help."
Nancy Levin states that diabetes management works best when it is a partnership between a husband and wife. "Each spouse is a valuable resource to the other, cooperatively sharing in the responsibilities."
The Swansons have worked out an agreement where Mark supervises the glucose testing and injections when he is home. This gives Katherine some distance from the routine, and she feels supported in caring for their child. "Without the support from Mark and my sister, I would be feeling a much heavier burden than I do," says Katherine.
Single parents must teach a responsible friend or family member the basics of diabetes management. This gives the single parent the opportunity to break away from the rigors of glucose control.
For a family headed by two parents or one, shared responsibility is a stepping stone in a child's emerging realization that he or she will take over these tasks.
Every parent who cares for a child with diabetes knows that a day will come when that child must take complete control. This scares many parents. Adolescents are more concerned about hairstyles and music than diabetes complications. How can they learn to give as much attention to diabetes management?
"It is normal for parents to be anxious about turning over the control to their child," says Nancy Levin. "Yet it is not advisable for a parent to perform tasks that children are able to do themselves. This fosters a lack of personal responsibility in the child."
With growth comes responsibility. What is the best way to transfer that responsibility, and when is the proper age to make that shift? Generally, a child between the ages of 8 and 12 years can progressively participate in various diabetes self-care tasks. By the age of 13, most youths can perform all the tasks associated with their diabetes care. This does not mean, however, that automatic transfer of all the responsibility should take place at age 13. Several other factors must be considered. The degree of responsibility given to a child should be based on an appreciation of the child's general cognitive and emotional maturity. Before adolescence, most children have the necessary motor skills, but not the psychological maturity to do such tasks unsupervised.
Also, if an adolescent is diagnosed at the age of 14, the cognitive maturity may be in place, but the diabetes skills are not. It would be unrealistic to expect this child to abruptly take on diabetes management all at once.
The Case of Joey
Joey is a 13-year-old boy diagnosed with diabetes at the age of 8. For the first two years, his control was very erratic and he was hospitalized twice with high glucose levels. The past three years have been less volatile, but his glucose readings still run high.
Joey is the fourth of five children who all live at home with both parents. Despite the serious ups and downs over the past five years his parents now seem unconcerned because he is staying out of the hospital. They requested that he take full responsibility for his diabetes, doing everything by himself except doctor visits. Joey only checks his blood glucose half the recommended times before giving himself his twice-a-day insulin injection. When his parents find the missing checkpoints in his log book they argue that he is not taking proper responsibility. Yet they do not make any supportive move. Joey is attempting to manage his diabetes without the necessary adult supervision and relational support that he needs to effectively carry out the desired tasks.
Joey's parents assume that because he is old enough he is automatically capable of completely managing his diabetes alone. Yet he lacks a base of diabetes knowledge because he has never had long periods of good control to use as a reference point. His parents believe they are helping Joey by giving him the responsibility for his diabetes care, but they are skipping the everyday support and problem solving that are crucial for the effective transfer of responsibility. Without this type of parental engagement, it is unlikely that Joey will establish better glucose control.
Research has shown that adolescents given too much responsibility too soon risk poor glucose control, additional hospitalizations and a sense of helplessness. The question is not whether family members should be involved, but rather how they can remain involved and supportive through the gradual transfer of responsibility.
Giving Up Control
At the other end of the spectrum are parents who are reluctant to transfer management control to their adolescents, even though they are ready. "These are conscientious parents, but they overprotect their child because of their own fears," says Sandy Kemink.
The difficult balance to achieve is remaining involved without being intrusive. Kemink suggests that parents examine their own fears and need for control, while consciously giving their child more responsibility.
Mentoring Your Child
Every child needs confidence and competence to learn a new task or cope with change. Children with diabetes must develop not only the mechanical skills but, more importantly, the motivation to manage a chronic disease for the rest of their lives To accomplish this, start by modeling the desired skills for the child, then allow the child to practice the skills while teaching them through conversation, joint problem solving and relevant literature. Encouragement, both verbal and physical, is a great way to reinforce the behavior.
Gradually the child's confidence should grow. It is then appropriate to increase the child's responsibility without removing any of the parental support. Parents should watch the child perform a task until both feel comfortable with complete autonomy.
Even when a child is performing the management skills independent of parental supervision parents must remain appropriately involved. Even though the adolescent is now managing the physical aspects of diabetes, they still need emotional encouragement and affirmation. Empathy for the ups and downs, the feelings of being different from their peers and the natural struggles that accompany adolescence keep the relationship strong and open
"By the beginning of high school, adolescents should be taking a good portion of the responsibility," says Levin. "By high school graduation they should be completely self-sufficient in their abilities. From a diabetes standpoint, they should be able to attend college or live on their own.
Parents do not instinctively possess these abilities to healthily raise a child with diabetes. Michael, a father of twin girls with diabetes, says, "Perhaps the greatest assets that parents have are other parents struggling with the same things. My wife and I found a life line through a parent support group those first two years. There is great consolation in knowing that others are attempting to walk the same road."
The dynamics of diabetes and family life are complex. Some families have an abundance of emotional support and do very well. Others perpetually struggle with applying knowledge, finding the motivation or developing better communication with their child. The good news is that there are many excellent resources for help. Ask your local hospital for support groups and other resources.
Often the hardest step is to admit that your family needs help. If parents can hurdle that first barrier then they probably have the emotional skills to make progress.
Knowing age-appropriate activities is only half the battle. Actually performing them every day is the other half. We all have emotional barriers to good self-care. Communication breaks down these barriers.
If you openly communicate successes and fears, your family can maintain close, nurturing relationships, which will improve BG control.