Grief and Loss

At an early point in the family life cycle, families learn that their child has a disability. The family then must address the twin issues of grief and loss. These reactions and feelings relate to grieving for the loss of the “perfect child” (Ellis, 1989) and/or to the feelings that their dreams for their child have been lost (Gargiulo & Graves, 1991). Olshansky (1962) characterized this process as the “chronic sorrow syndrome” and Jaffe (1991) points out that parents experience feelings of guilt, anger, disappointment, withdrawal, sadness, and denial early in the process and later experience feelings of depression, helplessness, ambivalence, and being burdened. These feelings do not occur only at the time of identification but occur throughout the life of the child and his/her family (Hanline, 1991; Spidel, 1995). The feelings of loss occur regardless of the age of the child at identification or recognition of the disability and regardless of the level of severity of the disability identified (Gargiulo & Kilgo, 2000). However, the intensity of these reactions may vary depending on the two specific factors: first, the age of the child when identification occurs, and second, the severity of the child’s condition. Either factor may increase the level of stress experienced by parents. Other factors influencing reactions of the parents to the information that their child has a disability include the parents’ socioeconomic status, their physician’s attitude, the presence of other children and a spouse in the home, their prior information about the disability, their cultural/ethnic values, the availability of support systems, their religion, the presence of other children with disabilities in the family, and the level of family functioning (Lambie & Daniels-Mohring, 1993; Mary, 1990). 

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.