Grieving The Loss Of The Perfect Child

The five stages of grieving are the same as the five stages of dying: denial, anger, bargaining, depression and acceptance. A key point made by Dr. Kubler-Ross in On Grief and Grieving, is that the five stage model is meant to be used as a tool to help "frame and identify what we may be feeling." They were never meant to describe a typical response to a loss because every person's reaction to loss is unique, just as every loss is unique. It is also important to realize that not everyone goes through all of the steps or goes through them in a linear fashion. Some steps may be missed entirely, others may be experienced in a different order, and some may be re-experienced again and again.

The U.S. Department of Health and Human Services (DHHS, Health Resources and Services Administration, Maternal and Child Health Bureau) estimated that by 2004 there were well over 9 million children in the United States with physical, developmental, behavioral, or emotional disabilities requiring some sort of specialized therapy service. Numerous studies have examined the most effective strategies for families to cope with the stressors of having a handicapped child, especially in regard to the impact of a child's disability on the parent-child relationship and the grieving process the entire family experiences due to the loss of “the perfect child.” Although the order and description of the “stages” involved in the different models offered for this grieving process are debated, the basic components remain consistent:

  • The grieving process for families of disabled children can last just as long as the grieving process for families with children who have died.
  • The negative emotions experienced as part of this grieving process are significant in both intensity and duration, and can include but are not limited to: sadness, anger, resentment, shock, denial, anxiety, guilt, shame, depression, disappointment, confusion, stress, cynicism, frustration, helplessness, self-doubt, humiliation, and any combination thereof.
  • Every loss and every response to loss is unique to the individual experiencing it. As such, every person progresses through their own personal stages of grief in their own order and time.
  • Higher levels of complexity in childhood disabilities result in a higher number and level of stressors on an already vulnerable family. These stressors can be related to the amount of time and energy needed to provide, coordinate, and arrange direct care for the disabled child; the change to previously set family events, schedules and routines; the processing of technical information in relation to both the disability and the services required (equipment/medication/therapy) to address the disability; the social ramifications of labeling and stereotyping associated with disabilities; and the financial burden created by the ongoing health care needs of their child, especially when the household income is reduced by parents needing to take extended time off from work or even stop working altogether due to the time requirements involved in meeting their child’s basic health care needs.
  • Higher levels of ambiguity or uncertainty in childhood disabilities, especially in regard to the prognosis or outcome of the child's development as a result of the disability, also contribute to the level and intensity of stressors on the family.
  • Unresolved, these negative stressors and emotions can lead to alienation, avoidance, withdrawal, and isolation for the family.
  • “Chronic Sorrow Syndrome” has been defined as a pervasive pathological grief state, similar to depression, observed in parents of children with disabilities who are unable to achieve resolution in their grieving process.
  • Holistic models for the grieving process, which encompass the emotional, physiological, intellectual, behavioral, and spiritual components of grief, seem to offer the most effective methods of resolution for families with disabled children. Such models provide multifaceted support systems with appropriate interventions for crisis management, effective coping strategies, and empowerment through information, training, counseling, and acceptance.
  • Healthy resolution occurs when parents are able to regain the confidence in their own competence to care for their entire families, the trust and knowledge to make informed and intelligent decisions regarding their child’s disabilities, and the optimism and empowerment to both regain and maintain control over their lives.