Reactions to the Birth of a Child with Disabling Conditions (page 3)
Although there are similarities in the ways parents react to the birth of a child with a disabling condition, there are also many other factors that mitigate a wide range of parental responses. This article will examine those common attributes, as well as those factors that result in differential responses. Murray and Cornell (1981) posit that parental reactions at the birth of a child with disabilities are based upon the belief that the grief they experience is the result of the loss of an expected "normal" child. The type and degree of parental reactions are highly related to the degree to which the child's birth deprives the parents of their dreams and fantasies relating to the child.
Farber (1975) lists the successive adaptations in families when having a child with severe mental retardation:
- Labeling Phase. The family looks at the removal of the bases for the existing role arrangements and finds that major understandings underpinning family relationships may have to be renegotiated.
- Normalization Phase. The family makes a pretense of maintaining its normal set of roles. Family members try to be considerate of each other for role lapses in an attempt to keep family life as normal as possible. The family presents a face of normality to the outside and seeks to maintain liaisons with the world of normal families.
- Mobilization Phase. The family members intensify the time and effort given to family demands, without, however, giving up their claim to normality as a family.
- Revisionist phase. The family, in isolating itself from community involvements, can no longer maintain an identity of normality, and it revises age and sex standards in its organization of family roles. This revision represents an attempt to maintain cohesiveness in an uncaring and lack-of-understanding world.
- Polarization phase. The family, finding itself unable to maintain its coherence in a complacent or perhaps hostile world, turns its attention inward to seek the sources of this complacence or hostility within the family.
- Elimination Phase. The polarization eventuates in arrangements to preclude contact with the offending person himself. In this phase, the family seeks to renegotiate (with whatever resources remain) to regain those roles regarded as normal (p. 251).
As a result, parents pass through a sequence of feelings and reactions (Murray, 1980, p. 151).
- Failure to Believe. Parents do not accept a diagnosis and continue shopping for a new diagnosis or cure. Parents also may minimize the seriousness of the disability as they develop coping mechanisms.
- Self-Blame. An overwhelming feeling of guilt may often be initiated by the parent. Parents may experience regret about some of the things they think they should not have done.
- Anger and Self-Pity. These two emotions often are closely aligned. Parents feel helpless and unable to change the disabling condition, and this helplessness often develops into either anger or pity. Parents will displace their anger onto the professional, the spouse, or the institution. Self-pity and/or depression can be expected from parents of children with disabilities and should be permitted as parents wrestle with how to cope with their problem.
- Giving and Sharing. A common type of parental reaction that usually takes place following failure to believe, self-blame, and anger and selffpity, is seen as parents volunteer to help other parents of children with disabilities, or as they begin to help teachers and other educational personnel. They may also become very involved with their child s activities.
Some other parental reactions are identified on Featherstone's (1980) emotional response list of fear, anger, loneliness, guilt and self-doubt, and marital stress. Menolascino (1974) indicates three stages of parental acceptance: rejecting the diagnosis (shock and denial), feeling guilty, and responding to the child's and their personal needs and making efforts to handle and control the situation. Roos (1985) states that parents of children with mental retardation are at-risk to be misunderstood and mistreated which may cause the following reactions: loss of self-esteem, shame, ambivalence, depression, self-sacrifice, and defensiveness. Gordon (1975) lists possible parents' concerns about the birth of a child with disabilities, including loss of confidence in their worth as procreators and individuals, feelings of inadequacy and hurt, ruin of dreams and hope, unhappiness, rejecting the child and each other, withdrawal, irrationality, uncontrollable anger, depression, not being able to communicate, fear and uncertainty, frustration, helplessness, guilt-ridden feelings, resentment, anxiety, and acceptance. He indicates that it is helpful for parents to share feelings with other parents. In his own experience, he finds it extremely helpful for enhancing group dynamics if parents and professionals are relaxed and at ease with each other.
Giving birth to a child is stressful. It causes even more stress if the child has a disability (Suelze & Keenan, 1981). In addition to a variety of feelings and reactions, parents also face a number of sources of stress. Peterson (1987) summarizes these "stressors" as:
... additional expenses and financial burdens; actual or perceived stigma; heightened demands on time as a result of caretaking requirements for the child; difficulties with basic caretaking tasks such as feeding, bathing, dressing; decreased time for sleep; social isolation from friends, relatives, neighbors; reduced time for leisure or personal activities; difficulties in managing the child's behavior; interference with routine domestic responsibilities; [and] general feelings of pessimism about the future (pp. 422-423).
Sharing their experiences as parents of a child with hemophilia, Massie and Massie (1975) cite the health-worshipping tendency in our society as a major cause of sources of stress. "Every family with a handicapped or chronically ill child shares the same problems: lack of money, isolation from the health community, prejudice, misunderstanding in the schools, loneliness, boredom, [and] depression" (p. xi). Parents' potential to cope effectively with these sources of stress is related to factors such as severity of the child's disability, the family's stability, and its internal and external support (Peterson, 1987). These factors will be discussed later in this chapter.
In addition to the reactions following the birth of a child with a disability, a number of parents and families may also face the situation of having a child with a terminal illness. These parents and families may have further feelings of shock, denial, sadness, guilt, hostility, bargain, depression, and anger which need to be dealt with before acceptance can occur (Green, 1971; Lian 199Gb).
It should be noted that the purpose of identifying parental feelings and reactions is not to produce an uncaring chronology of parents' movement from one stage of feelings and reactions to another. Rather, it is to provide appropriate assistance. Professionals are encouraged to determine exactly what services parents need and prefer at each specific stage.
© ______ 1994, Merrill, an imprint of Pearson Education Inc. Used by permission. All rights reserved. The reproduction, duplication, or distribution of this material by any means including but not limited to email and blogs is strictly prohibited without the explicit permission of the publisher.
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