AAMR Promoting Family Health and Resilience: AAMR Promotes Progressive Policies, Sound Research, Effective Practices, and Universal Human Rights for People with Intellectual Disabilities

By Levy, Judith M. | The Exceptional Parent, February 2003 | Go to article overview

AAMR Promoting Family Health and Resilience: AAMR Promotes Progressive Policies, Sound Research, Effective Practices, and Universal Human Rights for People with Intellectual Disabilities


Levy, Judith M., The Exceptional Parent


Having a child with a disability or chronic health condition is a significant life event. It can be a mixed blessing, a joy as well as a challenge. Some of the more stressful issues involve emotions and others involve the reality and cost of daily special circumstances. Parents wonder how to find time for other children in the family and for themselves. Any of these issues can contribute to individual and family stress and a decline in coping and resilience.

In a study conducted in Finland, parents who coped positively accepted the situation quickly and had optimistic attitudes toward the future. These parents also thought family values had changed for the better, kept their individual activities or developed new ones, shared household chores and child care and had an extensive social support network. (Taanila, Syrjala, Kokkonen, & Jarvelin, 2002.) These findings suggest that certain coping strategies promote family wellness and may decrease the likelihood of debilitating stress.

Take care of yourself first

Taanila and colleagues (2002) found that those parents designated as "high-coping" considered their own needs as well as those of their children. Yet, many parents consider themselves last or not at all. Using the metaphor of an airplane emergency is helpful in understanding this. In order to help their children, parents must be able to breathe, so they are instructed to put on their own oxygen masks first. This allows parents a chance to think and act logically, rather than just react. Caring for your own needs requires familial and social support and cooperation, though it is often the most difficult task.

Rest, Relaxation and Recuperation

There are many reasons to think that these are impossible. Roadblocks such as limited time, no sitter or no money often get in the way and you must keep thinking that other family members come first, or that you don't deserve to do something for yourself. Despite this, it is important to take the time for regular, planned opportunities to do something fun.

Activities do not have to be expensive. Having something to look forward to makes it possible to cope more easily with what comes up every day. To make this possible make sure everyone understands how important it is, make plans, keep them and continue to make plans. Remember that nurturing important relationships and continuing or developing important hobbies and interests is part of caring for oneself.

Practice resilient behaviors

Resilience can be defined as, "the capacity to confront and make the best of a difficult situation and to develop methods to reduce stress." Parents can promote resilience in themselves and their families by:

* Promoting developmentally appropriate activities;

* Promoting independent thinking and action in children so that they can develop internal monitoring and control;

* Encouraging the entire family to anticipate future needs;

* Practicing family rituals such as meals, celebrations, vacations and conversations with friends and family;

* Constructing positive, optimistic and valued meanings for their circumstances;

* Using positive and logical coping strategies.

Dealing with anger and guilt

Certain psychological and social responses can make the coping process difficult. Although common and understandable, these feelings interfere with relationships, work and the ability to think logically because they use up precious energy that could be used more productively. Persistent guilt may lead parents to treat the child with a disability, as well as siblings, in ways that are detrimental to the child, such as excessive pampering or setting few behavioral limits. To prevent this, talk with trusted friends, family or clergy. Finding a parental support group may also ease tensions. If these things do not help, see a mental health professional.

Coping with difference

Parents, the child with special needs and siblings must cope with the stigma of being different. …

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