The Doctor Is In is an occasional series where JHU Press authors discuss the latest developments and news in health and medicine.
Guest post by Kay Harris Kriegsman and Sara Palmer
“Being a parent has given me more to live for, more to appreciate about life. I look at the world with a sense of purpose. Having a child has an impact; having a child who has a physical disability has an even greater impact. I can’t separate the two. It’s a lot more work, but rewarding. I have to be positive and tough in a way. I have a lot more love than I knew I had.”—Kathleen, mother of a child with spina bifida
Parenting is one of the most challenging—and rewarding—roles of life, full of anticipated responsibilities and pleasures. When a child has a physical disability, whether at birth or later, parents have to learn to manage both the expected problems of parenting as well as the unanticipated medical and physical needs of their child. Parents may have complex feelings—anxiety, sadness, or anger—as the dream of a “perfect” child is replaced by the reality of a child with physical limitations or differences. Yet most parents—if they have emotional support; practical help; and medical, educational and social resources—will form a positive attachment to their child, include their child in family life, and learn how to prepare him or her for adulthood, just as they do with their able bodied children.
The first step for parents in raising resilient children is to take care of themselves. Some things that can help parents get started include:
- understanding that their feelings are normal; they are not crazy, just dealing with an unexpected and challenging situation
- getting support from family and friends
- connecting with organizations for education, peer support, and advocacy
- learning communication skills to navigate medical, educational, and other systems affecting their child
- balancing the needs of their children with self-care
When parents care for themselves, they have the energy to create an inclusive “mixed-bag” family—one that includes both able bodied children and one or more child with a disability. An inclusive family respects the individuality and promotes the development of each child by balancing the needs of all children in the family and creating equivalent expectations for each child’s success. Unlike children with intellectual disabilities, who may require parental or other assistance into adulthood, children with physical disabilities can be prepared for adult psychological and social independence, just as their siblings without disabilities. With the right ingredients, children with physical disabilities can become resilient adults, capable of bouncing back from adversity and living life to the fullest.
In Just One Of The Kids: Raising a Resilient Family When One Of Your Children Has a Physical Disability, we present a model for raising resilient children, with or without a physical disability. This includes four basic ingredients—experience, responsibility, socialization, and risk-taking—essential to preparing children for adulthood.
We know life by experiencing it. The feel of a thunder shower or falling snow, the sensation of riding a horse, the joy of painting a picture, and the effort of throwing a ball are some experiences that link us to other human beings and to the world. Ensuring access to experiences for children with physical disabilities requires creativity from parents. In Just One of the Kids, a number of families share their strategies for exposing their children to sports, education, music, the arts, travel, and many more life experiences.
Children long to know that they are depended upon; they benefit from being given age-appropriate responsibilities to help their families. Many parents try to “protect” their child with a physical disability by not assigning him or her chores. But responsibility is critical to raising trustworthy, competent, and self-confident children. Our book provides tips on how to assign responsibilities to your children based on age and ability, and gives many examples of how other families have done so.
Socialization, including participation in peer, family, and community activities, builds bridges to others that are vital to success in relationships, employment, and enjoyment of life. Parents can help break down attitudinal and physical barriers that exclude their children with physical disabilities from social opportunities, and encourage their children to join in social activities with their peers.
Risk-taking—assessing benefits, dangers, and what is reasonable—is key to preparing children, especially those with a physical disability, for adulthood. Although physical risk-taking is frightening for parents whose child has had medical problems or injuries, it is critical for helping a child expand skills, define limits, and develop good judgment.
Many parents, grandparents, and siblings with and without physical disabilities were interviewed for Just One of the Kids. In the book, family members share their perspectives on being part of an inclusive family and reveal the challenges and benefits of being part of a “mixed-bag” family. Using a combination of their stories, our model of resiliency, numerous tips and tools for parenting, and a compilation of resources for families, Just One of the Kids shows how you, too, can raise a resilient family when one of your children has a physical disability.
For additional readings and resources, contact Dr. Kay Kriegsman.
Kay Harris Kriegsman, Ph.D., is a practicing psychologist, consultant on disability issues. Sara Palmer, Ph.D., is an assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University School of Medicine. They are the authors of Just One Of The Kids: Raising a Resilient Family When One Of Your Children Has a Physical Disability, published by the JHU Press.