Beginning in the late 1980s, a new emphasis began to appear in research about the families of children with disabilities. This new perspective focused on how families succeed and used words like strengths, coping, resilience and empowerment.
What do these terms mean to families that include a child with a disability? We know that families are the real experts on this topic, so we turned to them to learn more. The goal of our research was two-fold. First, we wanted to learn, from the families themselves, about the strengths that they value most. And second, we wanted to alert professionals to these strengths, so that they could both acknowledge them and help families to build on them. One parent who talked with us made it clear why this is so important:
"Seventeen years ago, when our daughter was diagnosed, nobody told us any strengths. It was all like, `Well, this is going to be really horrible for the rest of your life ...' [But] it can be a good experience, and we would do it all over again. Her brother had more responsibility than he needed to have because I needed somebody who could take phone messages when he was six years old. I thought at the time, `Maybe this really sucks and I'm screwing up his life.' In fact, it has turned out totally the other way."
FAMILIES DESCRIBE THEIR STRENGTHS
This study was carried out by staff at the Center for Disabilities and Development, a component of the University of Iowa Hospitals and Clinics in Iowa City, Iowa. We provide health care and other services for people with disabilities and for their families. We asked each family:
* What are your strengths?
* How do you account for them?
* What strengths does your child with a disability bring to your family?
* What factors outside your family help nurture your strengths?
* How has your family changed as the result of having a child with a disability?
Each of the 38 families we talked with had been using services at the Center for at least a year. Their insights provided a clear perspective on what they see as the sources of their strength. Their answers identified six key factors: teamwork, family support, patience, hard work, adaptability and spiritual strength.
Teamwork, within the family and with people outside the family, is a primary source of strength. Within the family, both single parents and married couples tell us it is essential. "We are strong in hugs, and thanking each other, and asking each other for help when needed," says one parent. And families take pride in this strength: "We are incredibly bonded and dedicated to each other. We're tested more, but my husband and I have come through."
Brothers and sisters are also key members of the team. "If we both happened to be down," one family tells us, "the kids would say, `We can get through this together.'" A mother speaking of her 11-year-old son says, "In the past he had said, `I wish I had a regular brother, I wish I had someone to play with,' and there are really some hard, sad things said like that. But over the years he's been such a support, and he'll help in any way that we ask. I'm pleased at the qualities I see in him." A father says, "We pretty much rally together to meet our child's needs--and each other's."
Families often speak of the strength that grows out of family support. This includes the bonds among siblings and grandparents, and those that single-parent families especially, share with aunts, uncles, and grandparents. One mother summed up this support very simply as "knowing I am not alone."
Making time for the family is one way to nurture this strength. "We always share the day's activities at dinner. We practice really hearing our children, what they have to say," says one parent. Another comments, "We work hard to be supportive of all our children." The support that families get from friends is also a source of strength. …