Children's Responsibilities
IT IS NOT unusual for children who have an ill parent to assume responsibilities beyond their years. Many children who have a parent with MS are assigned more than the usual number of chores around the house. Although some children who have such increased responsibilities may become overly mature or serious for their age, most of them continue to develop and thrive in spite of the added stresses and responsibilities.
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| Talking With Children About MS |
More serious problems can result when school age and adolescent children become the sole caregivers for their parents because of too few community services and the unavailability of other adults to provide care. In these situations, the kinds of physical contact that are required for personal care activities (e.g., bathing and bowel and bladder care) often cause significant discomfort for both the child and the parent. In addition to their emotional distress, children who have such responsibilities may be absent from school often enough to interfere with their schoolwork and cause them to miss out on other important age appropriate activities.
In some families, children may begin to take on so many additional responsibilities that they function as a co-parent for siblings. These added responsibilities may include meal preparation, cleaning, and even disciplining younger children. Although these children may initially enjoy their new-found sense of authority and special position, they are likely to become quite confused about their role in the family, particularly since they still need nurturance and supervision themselves. They are also likely to resent the interference of these extra responsibilities with their own activities.
Although these are fairly typical problems that MS can present for parenting, it is important to recognize that there are marked individual differences in family strengths, coping styles, and social and emotional resources. Some individual and family characteristics seem to be related to better coping and adjustment to MS, including flexible problem-solving skills, a strong social support network, and the willingness to seek and accept help as needed.
Recommendations
Communicating With Children About MS
TALKING OPENLY WITH children about MS helps relieve their anxiety about the parent's health and their own security and well being. When parents are reluctant to talk about the disease, children often misinterpret silence as an indication that the problem is so terrible that it cannot be discussed. Most children are acutely aware when a parent has a health problem or is not functioning up to par. When no explanation is given, children use their vivid imaginations to conjure up an explanation for themselves, and their guesses are almost always worse than the reality. Most children are relieved to hear the truth.
In addition, some children become quite angry when they find out that others were told this important information before they were. Older children in particular may resent that distant relatives or people outside the family were trusted with this information while they were not.
Keeping secrets takes a lot of energy and diminishes good communication. The longer MS is kept a secret from children, the greater the likelihood is that they will hear this important piece of information from someone outside the family. Parents who can talk directly with their children about MS convey a message of strength and confidence, a message that no matter what the future brings, they will continue to love and care for their children.
Furthermore, parents who talk openly with children about the disease and their efforts to cope with it are also laying the groundwork for effective parent-child communications about other family issues. They are letting their children know that families handle problems together and support each other's efforts to cope with whatever comes their way.
When responding to common questions and concerns, it is essential to take into consideration each child's age and developmental level and not to overwhelm them with information they cannot understand. Thus, you might find, at least initially, that talking with each child individually enables you to tailor your discussion to the child's level of understanding. You can also ask children how they would like to learn more about MS - by reading a book with you or alone, watching a video, or accompanying you to the doctor's office. You may even be able to schedule a special appointment just for them to ask the doctor questions. Many age-appropriate educational materials are available through your local chapter of the National MS Society as well as chapter sponsored meetings designed for children. To find out more, you can check out Talking With Children About MS.