Discuss the five stages that are typical for parents and family members to go through when parents discover their newborn has profound intellectual disabilities. Why is important that teachers understand these stages?
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In describing the five stages through which people are generally considered to pass when dealing with loss or the grief associated with the birth of a severely handicapped child, the Kubler-Ross model is usually cited. Named for Elisabeth Kubler-Ross, a psychiatrist whose 1969 book On Death and Dying is considered a classic for its description the phases through which people mourning the terminal illness and death of loved ones pass. Those phases, or stages, are denial, anger, bargaining, depression, and acceptance. When discussing the parents of children born with, or who develop severe disabilities, Kubler-Ross’s stages are adapted, with the latter three stages commonly described as fear, guilt, and acceptance.
There is one glitch with the wording of the question. Intellectual disabilities are rarely discovered as soon as the weeks or months following birth. On the contrary, they may not be identified or diagnosed for a year or more, depending upon the nature of the mental impairment. Unlike external physical deformities, intellectual or emotional disorders are not plain to see, and may not be apparent until the baby or toddler passes the age normally associated with developmental stages like crawling, walking, etc. That said, parents of newborns determined to have mental or severe physical disabilities will frequently experience the range of emotions identified by Kubler-Ross. The first of these stages, denial, involves exactly what that word means: Parents naturally refuse to accept that their newborn baby is not perfect. While, as noted, mental handicaps may not be apparent for some time, the denial stage does exist and does involve an emotional inability to accept the baby’s condition.
The next stage, anger, is equally self-explanatory. Once parents have acknowledged that their child has some form of deformity or handicap, there is often anger, at themselves for producing an imperfect child, at the child for not being perfect, at society for polluting the environment in such a way that the disability may have been associated with contamination of water, milk, etc., at the medical establishment for not foreseeing or preventing such a development, and at God, who parents under these circumstances may have trusted with the well-being of their then-unborn child. Following anger comes fear, of the unknown, of the radical changes to their lifestyles parents will experience, of the financial costs associated with special-needs children, of how the child will develop socially, if at all, and, most poignantly, how the child, once an adult, will fare in the eventual absence of the parents, who will eventually pass away.
The guilt phase is similar to anger to the extent that the parents blame themselves for their child’s condition. Did they do everything they could to ensure a healthy baby? Did they take unnecessary risks, like smoking or drinking? These are some of the questions parents experiencing guilt because of their child’s disability will often consider. Older parents of a newborn may question whether they should have conceived at such a late stage in life, when the prospects of autism or Down syndrome are greater. Endless self-examination is an inevitable part of the process. Finally, acceptance occurs – acceptance that their child is disabled and will always require special measures. While love for their child is usually not in question – with emphasis here on “usually”—this stage does involve an emotional recognition that this is their child and they love him or her absolutely.
It is imperative that teachers and school administrators (principals, nurses) be made aware of the family’s situation so that they can better accommodate the child and communicate rationally with the parents. Parents are often not the most rational human beings when the subject is their children, and the financial and emotional toll associated with special-needs children requires that teachers and others adapt their methodologies and communications accordingly. Parents of special-needs children are under enormous stress, in many instances, and teachers have to be trained to deal with such families on a routine basis.
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