Grief and Loss

Early work by Kubler-Ross (1969) with parents of children with disabilities focused on the grieving process. This work has become the basis for the currently accepted model used to explain parental reaction and overt behavior toward professionals. Kubler-Ross and others identified the following five stages of grieving:

• Denial: The unconscious avoidance of the anxiety related to the event. For example, when in denial a person may often have a feeling of numbness or confusion, and sometimes a disorganization of thought. They may not hear what is being communicated and may require follow-up after the emotional numbness passes.
• Bargaining: The time of fantasy thinking. For example, the person may exhibit the belief that “if I work really hard, I can fix this or at least make it better.”
• Anger: The time when the bargaining phase wears off and there is realization that it will not be “fixed.” For example, the person may respond with statements such as “Why me?” or respond in anger at a spouse, doctor, or professionals who may be seen as insensitive.
• Depression: Anger turned inward. For example, although the acceptance of the event can result in a realistic assessment of the situation and its implications, in some instances the resultant anger can turn inward and result in depression. Sometimes the person may have feelings of emptiness following the anger and depression that may interact, producing a feeling of “life without meaning.”
• Acceptance: A feeling of balance may return. For example, at this stage the event and its impact can be discussed. Guilt is lessened and realistic plans can be made.

The basic concepts of the Kubler-Ross model are used extensively in the training of special educators, counselors, and health care professionals (e.g., Spidel, 1995). These individuals in turn use the model to help parents understand their experiences. Several assumptions accompany the Kubler-Ross model. These include:

• Parents go through all stages.
• Parents move from one stage to another in a sequential pattern.
• Movement is a sequential and orderly process.
• Parents have the goal of acceptance and resumption of their lives.
• Failure to progress at a reasonable rate or remaining at one stage indicates a problem in the parent’s life or lack of acceptance or resolution of an issue or feeling.
• Unresolved feelings are abnormal, are destructive to the family, and need resolution.

Marsh (1993) points out weaknesses with the stage model, including its inability to handle the variety, intensity, and direction of change that parents report. Furthermore, when comparing parental reports and interviews of their reactions, many of the assumptions of the stage models are unsupported (Marsh, 1993). It is clear that parents experience the grieving process at different rates, that parents return to previous specific feelings during times of stress, that feelings of loss continue for the life of the parents, and that parental acceptance may never be completely reached. In fact, some parents say that acceptance may be an inappropriate goal (Marsh, 1993). Current models of parental reactions and grieving are not useful in explaining such differences (Mary, 1990).