Family social problems in the rett syndrome

Abstract

Having a child with the Rett syndrome in the family changes all the rules. It is crucial that one person not bear the entire load. The primary caretaker must build a support system, or risk resentment, exhaustion and martyrdom, none of which pay very well. She should beware of the "sainthood syndrome." The whole family needs to re-think its values, adopting a team spirit. Good communication is vital, and family as well as individual goals must be clear to all members. Family members who are not the primary caretakers must learn to recognize the signs of burnout and know how to step in and provide relief.