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Resilience and Disabilities: Strong Partners
Written by Laraine Masters Glidden, Distinguished Professor of Psychology and Human Development
"I'm sorry, Mr. and Mrs. Doe, but your daughter has Down syndrome." Horrible words to hear when the expectation is for a "perfect" child, and most parents will react initially to this news with depression, fears, and paralyzing doubts. But eventually these same parents will overcome the crisis and become loving and competent mothers and fathers to
their children with Down syndrome, or autism, or brain damage. For some parents it takes only hours and for others it's a longer journey, but regardless of recovery time, in the long run they are likely to give positive meaning to their children's disabilities and to grow stronger as a result.
Corinne Garland is one of these parents. Mother of a daughter with cerebral palsy, she responded in the book, Cognitive Coping, Families and Disability: "It is clear that it is not life events but our perceptions of those events, filtered through our personal experiences, beliefs, and values that give them meaning."
In my 30-year research of parents of children with disabilities, assisted by many dozens of St. Mary's College students and alumni, I have encountered many parents like Corinne Garland. I began this research with the expectation that families who adopted children that they knew had disabilities would demonstrate far better adjustment, both initially and over time, than families who expected their birth children to develop normally and without disabilities. I was correct about the initial reaction, but totally wrong about long-term adjustment. Although birth mothers and fathers experienced depression and other negative reactions at the time of their children's original diagnoses, almost
all adjusted over time, and displayed the same degree of positive outcomes as the adoptive families who had made the decision to rear children with disabilities by choice rather than by chance. In a word, these parents were resilient.
What allows them to recover, adapt, and thrive? Psychologists are interested in their resilience. Resilient individuals are likely to achieve positive outcomes despite adverse individual or contextual circumstances. They cope well in stressful situations; they are able to surmount obstacles that might lead others to desperation, hopelessness, and depression. They can reframe negative events to focus on the positive.
Resilience is a complex and dynamic characteristic, consisting of many components and changing over time and context. Innate, genetically based traits contribute to it, but we can also learn resilience by practicing strategies that promote it.
With regard to inborn characteristics, temperamental differences are present from birth. Some babies are "easy:" They are cheerful, affectionate, flexible in their routines, and not intensively reactive to aversive events. They are easily calmed by their caretakers and learn to soothe themselves in adverse circumstances such as getting vaccinated at the doctor's office. In contrast, other infants are "difficult:" They are more likely to be angry or fearful; they cry a lot and may react intensely and negatively to changes in their environments, have very high activity levels, and display difficulty in focusing. These predispositions are somewhat stable over time, but hardly a life course destiny. They can and will be modifi ed by environments, those within the family and outside of it, such as neighborhoods, peers, schools, and the time and context in which they live. These extra-familial environments continue to shape individual selves during childhood, adolescence, and throughout adulthood. Nonetheless, "easy" children are more likely to be emotionally healthy as adults than "difficult" children.
Effective coping is one aspect of resilience. Resilient adults are more likely to use coping strategies that focus on solving problems rather than avoiding problems and distancing themselves from the situation. They are not afraid to confront the situation if it demands direct action. Sometimes, individuals have little control of a problem and it cannot be solved satisfactorily. Resilient individuals tend to seek support from others and focus on whatever good might come from an otherwise negative situation.
Kara Owens* is one of the mothers in our long-term parenting study, and she typifies a resilient parent. Her son, Alan, was born at only 26 weeks gestation, weighing just 690 grams, which is considered very low birth weight. His survival was uncertain and the prognosis was cerebral palsy, intellectual disability, and visual impairment. Although Alan's disabilities were not as severe as these initial predictions, he was in special education throughout his schooling. Owens described how she coped with some of the difficulties that she encountered with school programs that she thought were not meeting his needs. She relied heavily on problem-solving strategies such as analyzing the problem, making a plan of action, and following it, and concentrating on the next step. She tried to get school officials to change their policies, and consulted with both professionals and friends whose advice she respected. She did not berate herself, avoid the situation, or deny its existence. Eventually, she was able to obtain the services that she thought were necessary for Alan's optimal development.
Characteristically for resilient parents, Owens reported that she was pleased with how her life was going, in general, and with Alan, in particular, and that his being part of their family was a very positive experience. She showed no signs of depression 17 years after Alan's birth.
Another characteristic of our most successful parents is that they try to enrich their children's lives to the extent possible with appropriate programs in the community. In turn, they frequently enrich the lives of other family members. Programs for children and adults with developmental disabilities are available in most communities. In fact, some, like Special Olympics, can be found all over the world. Earl Vallender, the father of a 19-year-old son, Corey, with autism and intellectual disability, spoke about the value of Special Olympics for both Corey and the entire family. Corey had started competing in Special Olympics when he was 13 and had participated in six different sports over the years. Vallender focused on how Corey had learned new skills, but even more importantly how his selfesteem and self-confi dence had improved. "He used to say, ‘It's too hard' all the time." Corey's father also spoke about how Special Olympics provides opportunities for the family to do things together and to meet other families with similar interests and concerns.
Psychology, like medicine, has a clinical aspect that focuses on curing individuals who are sick. However, in both fields, we recognize that the broadest mission and the one likely to be most effective is to focus also on prevention of illness. Understanding individuals who are mentally healthy and how to keep them that way is part of psychology's mission and our understanding of resilience, then, is a necessary and valuable component for the ultimate improvement in and maintenance of psychological health.
For more information go to http://www.smcm.edu/psyc/facultypages/lmglidden/project_parenting.html.
*All examples are based on real persons, but names have been changed as have incidental
details in order to protect confidentiality. Professor Glidden has taught psychology
at St. Mary’s College since 1976 and has worked in the disability fi eld for more than
40 years. She recently received the 2008 Distinguished Research Award from the Arc,
formerly the Association for Retarded Citizens.