The Rest of the Family
Families serve an important function. Families contribute to the growth and well being to their members by providing physical and emotional support. Families with a child with a chronic medical condition carry out those functions in the face of the additional stresses and needs brought out by that child’s medical problem. Families are not just a group of independent people who live together or spend time together. Rather, families are com- posed of individuals who are influenced and shaped by their interactions with other mem- bers of the family. When something significant happens to one family member there are reverberations throughout all other members of the family. This characteristic of families can be particularly problematic when a child has a medical, intellectual or behavioral prob- lem. Sturge-Weber can change the interactions and relationships of all members of the family.
Couples who have children with chronic medical conditions experience a high rate of mari- tal discord and divorce. There are a number of factors that contribute to friction in these marriages.
Over 50% report fatigue as a problem
The inability of the parents to communicate with each other about the child isolates them from one another.
In the majority of families, the burden of care falls on the mother and there can be hidden or not so hidden resentments.
Behavior problems in a child can intensify disagreements about child-rearing practices. Parents who cope the best share a number of characteristics.
First of all, they communicate. Couples who share work and worry report that their child’s medical problems strengthen their relationship.
Successful couples have flexible notions about gender determined family roles.
Chances for both mothers and fathers to engage in self-satisfying activities outside the home raise feelings of self-worth and that may have additional benefits for their child.
Support from grandparents and extended family members reduces the likelihood that the mother-child relationship will be exclusive by removing some of the responsibility from the mother. This additional support can also provide parents with free time to enjoy each other.
Normal parent-child relationships are vulnerable to distortion when a child has a chronic medical condition. Parents are often anxious and, as a result, that can change the nature of their interactions with their child. When children are ill, parents quite naturally and ap- propriately suspend normal expectations for their children. They are not required to do school work or perform household chores. Difficult behavior is ignored. When the medicalcondition is chronic, however, this alteration in expectations makes it difficult for parents to help their child become as independent and responsible as he or she can be. This sec- ondary effect of a chronic medical condition can create children who are passive and de- pendent.
Guilt-ridden parents are more likely to over-protect their child. Guilt in parents appears to be related to the severity of their child’s problem and the lack of a known cause.
Parents may lose confidence in their parenting skills. While they are quite capable of man- aging the behavior of their other children they may be incapable of placing any demands on their medically involved child.
A parent’s own anxiety may be passed on to his or her child.
Parents of children with Sturge-Weber should remember that the similarities between their child and other children far exceed the differences. To become as independent and re- sponsible as they can be, the child with Sturge-Weber needs the same socialization experi- ences as other children at their developmental level. Social supports are highly recom- mended for parents of children with Sturge-Weber. Parents need the opportunity to ver- balize their anxieties and they should be aware of self-blame. Local parent support groups may be available for parents of children with epilepsy, mental retardation and ADHD. Par- ents who take care of themselves will function best in their role as parents. Research has indicated that when mothers of children with Sturge-Weber have outside interests and so- cial supports, their children often have healthier social development.
Adjustment problems are not inevitable in siblings but parents frequently express concerns about their normal children and research has provided evidence that behavior and aca- demic problems are more common in the siblings of children with chronic medical condi- tions. These children experience their own stresses for a variety of different reasons.
Siblings may feel resentment because siblings compete for their parents’ time and atten- tion and a disproportionate amount of those resources is typically given to the child with the medical condition. In addition, siblings are often expected to meet a different set of standards than the affected child. They are expected to assume more responsibilities and behavioral expectations are higher. The child with Sturge-Weber may be over-protected and allowed to behave in ways that other children in the family are not.
Siblings may not be well informed about their brother or sister’s medical condition because that information is not discussed at all or is simplistic. These other children in the family often keep their thoughts and feelings to themselves and end up feeling isolated and ex- cluded from a major family problem.
Siblings may also experience embarrassment and guilt. These children may feel embar- rassment because of questions asked by friends or the reaction of strangers. Their embar- rassment may give rise to guilt because feelings of love and loyalty conflict with embar- rassment. Siblings may also feel guilt when they become angry with their affected brother or sister no matter how justified their anger is. Younger siblings may also feel guilty about surpassing a handicapped child in abilities.
Emphasis should be placed on helping the healthy child to develop his or her own identity and to understand the differences and similarities between themselves and their sibling. They should also have accurate and age-appropriate information about Sturge-Weber and any associated problems. In some cases, family therapy may be helpful.
Lynn Chapieski, PhD The Blue Bird Clinic Houston, TX
Sturge-Weber Foundation Fact Sheets are intended to provide basic information about SWS, KT and/or PWS. They are not intended to, nor do they, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment without first consulting a phy- sician. The SWF does not promote or recommend any treatment, therapy, institution or health care plan.
The Sturge-Weber Foundation PO Box 418 – Mt. Freedom, NJ – 07970 – USA 800-627-5482 – www.sturge-weber.org