Reactions to the Birth of a Child with Disabling Conditions

Farber (1975) lists the successive adaptations in families when having a child with severe mental retardation:

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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).

1. 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.
2. 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.
3. 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.
4. 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.

It is important to note that parents of a child with disabilities may have both positive and negative responses. Waisbren (1980) reports that parents tend to see themselves more negatively and express more negative feelings toward their young children with developmental disabilities soon after birth. They tend to contact more medical and hospital personnel and end up with more uncertainty. Their negative feelings include hopelessness, anger, and rejection, which center on the child's appearance or lack of ability. However, Waisbren (1980) also finds that parents can have positive feelings toward their children with developmental disabilities, too, including their feelings toward the child as good-natured and easy-going. Other positive reactions include more volunteer activity related to the child, better understanding of individual differences, and being more tolerant toward others.

A family's experience, such as feeling pain when having a member with a disability, being labeled because of symptoms, beliefs about the cause of illness, attitudes toward medical and therapeutic personnel, or desire for treatment, will be strongly influenced by the family's ethnic and cultural background (McGoldrick, 1982). For example, Turnbull et al. (1988) summarize white, Anglo-Saxon Protestants' values as "self-reliance, self-control, achievement, and self-determinism" and Mexican-Americans' values as "cooperation, interdependence, collectivism, and cohesiveness" (p. 86). Professionals in education and related services should be willing to make efforts to understand such cultural and ethnic influence when providing services. For more information about specific ethnic families, such as Italian, Hebrew, Asian, Hispanic, African-American, or Caucasian families, readers are encouraged to study the work of McGoldrick, Pearce, and Giordano (1982) and Heward and Orlansky (1992).

For parents who fail to traverse the several stages of feelings and responses successfully, the disabling condition that directly impacts the child could then produce a secondary disabling condition called parentalplegia. Murray and Cornell (981) defined parentalplegia as:

a secondary psychophysiological (stress induced) condition that evolves among parents of handicapped children. . . It is the inability on the part of parents to adjust to the handicap of their children ... It is recognized by extremes in resulting parental attitudes toward their child's handicap ... The parents adaptability and efficiency in daily living is radically affected by their inability to adjust to the condition of their child. (p. 201)

It is important for education and related services professionals to understand parental responses and to assist parents in an efficient way so that parentalplegia can be prevented. If necessary, counseling and other services should be sought.