A family living with a child with Prader-Willi syndrome (PWS) faces some unique challenges:
- How does the structure a PWS child needs affect siblings?
- How can siblings be helped to understand and support their brother or sister with PWS?
- How can appropriate behavior be encouraged in relatives who are resistant to maintaining, for example, food security?
- How can a couple cope with the stress of living with a child who has special needs?
- And how do caregivers take care of themselves in the midst of the often daily challenges of life with a person with PWS?
Without support in these areas, a family can quickly find itself in crisis. Remember, if you reach a particularly tough point, you can always call a Family Support Counselor to vent and perhaps think through some new strategies and responses to your situation and at least know that you are not alone. In this section, we discuss some of the common family concerns.
Involving Family Members and Friends
When possible, it is very helpful to a child with PWS to have as many supportive people as possible in their lives – siblings, grandparents, aunts and uncles, and friends. But it sometimes challenging for people to understand the special role of relatives and friends. Explaining the syndrome is part of the challenge. The other part of the challenge is helping family members and friends to know how to be supportive.