The Grief Process following the diagnosis of a Childhood Disability

As Cassie’s parents, Renee and Ned, know so well, the world changes irrevocably following the birth of a child with special needs. Once a child is diagnosed with a disability, the family is changed forever. Many of the changes are positive, some are negative, but all of them engender tremendous stress in the family unit. Charles Callahan, the father of Owen, a severely disabled individual with an elusive diagnosis, provides an eloquent description:

"The fact of the matter is, ‘since Owen,’ our family began a new, fundamentally different existence. Many of the problems we faced confused and frustrated us, leaving us little confidence either in ourselves or in the professionals who bobbed in and out of our lives. We had no body of experience upon which to draw, as if we had been pushed into the middle of a strange and crazy game in which we knew neither the names of the plays nor the rules. As Owen’s behavior grew more unusual, our isolation increased. The old world didn’t know how to handle us, and neither did we." (Callahan, p. xiii)


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Robert Naseef (1997), a psychologist who has a son with autism, has taken Elisabeth Kubler-Ross’ classic theory about death and dying and adapted it to specifically address the effect that a child’s disability has on family members. Naseef explains that the birth of a baby with disabilities may feel like the death of a normal, healthy infant. In his extensive work with parents of children with disabilities, Naseef has found that mothers and fathers generally identify the following stages of the grief process:

In addition, the time frame and other special considerations about the grief process will be discussed.