Reactions to the Birth of a Child with Disabling Conditions (page 5)
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.
Menolascino (1974) emphasizes the importance of an initial multidisciplinary diagnostic evaluation and interpretation interview which can be crucial to further intervention. To achieve an effective initial interpretation interview with parents, he suggests that professionals need specific skills such as utilizing knowledge of the disabling condition, being able to explain and discuss the condition at a parental level of understanding, and having an understanding of the family dynamics. In addition, professionals should learn and practice to become active listeners, community resource users, and caring helpers or facilitators. And overall, parents should be recognized as full and equal participating members on the educational and related services team. There should be positive attitudes and sharing and working together as a team. Professionals should try to accept parents, and learn to listen and encourage them. Professionals should share all relevant information, enhance clear and successful communication, and provide methodological and technical assistance for parents' selection and decision of goals and approaches. At many stages of parental reactions, professionals may find parental mentors hip and peer support to be very helpful.
Safford and Arbitman (1975) reaffirm that societal attitudes toward individuals with disabling conditions affect not only the individual but also those family members and friends closest to them. Hollingsworth and Pasnau (1977) use the theory of defense mechanisms to interpret parents' and families' responses such as denial, guilt, projection, anger, shame, and over-protection. They state that the existing disabling condition of a child may be perceived as a threat. This is because parents view their child as an extension of themselves, and having a child with a disability may cause them to lose hope of having a healthy and normal child. They may concentrate more on this concern, rather than on the immediate needs of the child. This defense mechanism may have already been greatly decreased since today, society tends to show fewer negative attitudes toward individuals with disabilities and their families, and instead provides them with more understanding, support, and assistance. As Turnbull (1985) describes, " ... over the years the sensitivities of people have far outnumbered the insensitivities" (p. 138). She indicates that the sensitivity of her extended family, friends, and neighbors to her child with a disability is positive and rewarding.
Another factor causing parents' negative responses is related to professionals' comments and prognosis statements, including those generally reported in media. Unfortunately, many of these comments and prognosis statements have been inaccurate. In Baby Jane Doe's case of the early 1980s, for example, Baby Keri-Lynn was described as follows: " ... she wouldn't live all that long and as long as she did live, she would be profoundly retarded and in constant pain, would always be bedridden, would never be able to learn anything and would never be able to recognize anyone, even her parents. In grim sum, her quality of life would be so low—the press implied—that her departure would be a blessing to her parents and, of course, to herself" (Hentoff, 1991, p. 3). It was found that, during her first seven years of life, this child "was not in pain, that she laughs and plays with her parents and other children, and recognizes her parents with no trouble at all" (Hentoff, 1991, p. 3). Several of her pediatric surgeons said that, if the court ruled for her to receive more aggressive treatment, she would do even better in terms of mobility, education, and intelligence.
Being a parent, Gorham (1975) found a number of "ironies" about living with a child with disabilities prior to enactment of P.L. 94-142, including: (a) parent's responsibilities for monitoring the child's progress through the fragmented service system; (b) parent's efforts to seek help from a non-school medical professional, such as the physician who actually has minimal exposure to the total need of the child and the family; (c) the highly specialized diagnostician who is less concerned, and may be less willing to deal with the parent's situation and feelings; (d) recommendations made by professionals to place the child in an institution; (e) not being allowed to read confidential information about the child; (f) lack of community-based group homes, foster homes, and respite care facilities and programs; (g) lack of free and appropriate public education; and (h) being made to feel guilty by the concept of normalization. These "ironies" tend to make parents feel guilty, and feel bad or incompetent about themselves.
© ______ 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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