2.7 PARENTING AND THE DEAF CHILD
2.7.1 Parental responses to the diagnosis of the child’s deafness
For most hearing parents the discovery that their child is deaf is intensely stressful and presents challenges and demands to which the entire family must adapt. Parental responsibilities take a new dimension for which many are not adequately prepared.
The impact of having a deaf child has a ripple effect on the parents’ life-world, their relationships with self, others and God. Hearing families with deaf children are confronted with several challenges that often manifest themselves before deafness is diagnosed (Mertens, Sass-Lehrer, & Scott-Olson, 2000: 133).
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Parents’ reactions to the diagnosis of their child’s deafness differ. Many variables influence the way parents respond to the diagnosis of deafness (Scheetz, 2001: 60;
Schirmer, 2001: 26-27; Luterman, 1991: 146-147). Firstly, it may well be the case that during the lengthy road to medical diagnosis, parents may have had time to consider the possibility of deafness and learn about the implications. Secondly, parents may have varying degrees of knowledge and understanding of deafness and experience with deaf individuals. Kampfe (in Kricos, 2000: 282) states that the degree to which the emotional reactions of parents will vary from family to family depends on a range of complex factors which may affect the way the family system functions. Parents’
responses differ as a result of their perceptions being so different, and social status indicators such as ethnic background, age, and gender of parents might influence the extent to which they perceive an event as being undesirable, disruptive or stressful.
The degree of deafness is yet another factor determining parents’ reactions. Deafness may range in severity from partial to profound, and may give rise to various degrees of adjustment. Suren and Rizzo (in Levitz, 1991: 85) maintain that it is not easy to predict whether parents will be able to adjust more readily to mild or profound deafness, and that there is no direct correlation between the degree of parents’ frustration and disappointment, and the degree of severity of their child’s disability. Some parents with high expectations for their child may find their dreams shattered by even mild, less conspicuous forms of disability. These parents find difficulty in accepting or admitting that their child is disabled in any way because of fear of stigmatisation. They pretend that there is no problem or they try to hide it, especially in the case of mild deafness. However, such pretence could create more problems for the parent and child, and hamper the child’s progress (Kapp, 1991: 347).
Kampfe (in Schirmer, 2001: 27) identified other variables that determine parents’
reactions to their children’s deafness. These include the personal characteristics of parents and their ability to cope, career goals, sensitivity to the opinions of others, education, marital satisfaction, and cultural views towards disability. Some of the personal characteristics that could influence parents’ reactions to the birth of a child with a disability include, inter alia, the parents’ health, parents with disabilities and different coping styles. Parents who have poor health may not be in a position to
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manage the added responsibility of raising a child with a disability, and their stress levels may be increased. Parents with disabilities may rely on older children or other children without disabilities to care for the deaf child.
The hearing status of parents can influence their response to the diagnosis of deafness. While hearing parents may experience overwhelmingly negative emotions, deaf parents generally respond in a more positive manner (Meadow-Orlans, Mertens &
Sass-Lehrer, 2003: 79; Spencer et al., 2000: 52; Koester, Papoušek & Smith-Grey, 2000: 57; Marschark, 1997: 76; Levitz, 1991: 87). Meadow-Orlans et al. (2003: 11) found that the impact of the child’s deafness was less significant on deaf mothers than on hearing mothers. Deaf parents may be relieved that their child, being deaf, would be able to adjust to the Deaf sub-culture more easily (Scheetz, 2001: 62; Marschark, 1997: 76). According to Meadow-Orleans et al. (2003: 79) and Davis and Silverman (Levitz, 1991: 81), several studies show that deaf children of deaf parents tend to be more successful at school and later as adults compared to deaf children of hearing parents. This may be due to the fact that hearing parents, as a result of their lack of experience with deafness, are unable to provide satisfactory role models for their deaf children. In addition, deaf parents of deaf children are able to establish more effective means of communication with their children, and this could contribute to their intellectual development.
The socio-economic status of the family also contributes to the parents’ attitude to their child’s deafness. Often, the assumption is made that the higher the socio- economic status, the greater are the resources available to cope with the child’s disability. However, Turnbull and Turnbull (in Levitz, 1991: 84) point out that a higher socio-economic status does not necessarily result in more efficient ways of coping with a child with a disability because of the high priority given to achievement.
In such a family a disability may be seen as a disappointment and hindrance. In families with a lower socio-economic status, other values such as family togetherness and happiness may be considered more important than achievement. In poverty- stricken families, harsh survival problems may overshadow the implications of having a child with a disability. Socio-economic status is linked to the types of support that parents need, and related to this factor is age, marital status and level of education of
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parents. All of these factors may impact on parents’ reaction to the diagnosis of deafness and influence their ability to seek support services and benefit from them (Meadow-Orlans & Sass-Lehrer, 1995: 320). Other variables identified by Kampfe (in Schirmer, 2001: 27) are the type, degree and cause of deafness, the resources available to parentsfor raising a deaf child, and the support they receive from their family, other families with a deaf child, friends, members of the community, and professionals.
When parents are expecting a child they seldom think of the real-life implications of having a deaf child, and usually they have little information to assist them to gain a better understanding of deafness. Some parents, on learning of the diagnosis of their child’s deafness, may experience strong negative emotions which they struggle to come to terms with, but many do not respond in this manner. However, most hearing parents are devastated at the birth of a deaf child, as their dream of the ‘perfect’ child is shattered (Ross et al., 2004: 156; Schirmer, 2001: 27; Krause, 1993: 207). In some families, deafness is regarded as a crisis that can be overcome, while for other families it is seen as a great tragedy. Yet, in other families deafness is seen not as a problem in itself, but as an additional component in their struggle for survival.
According to Gargiulo (in Levitz, 1991: 89) parental responses to the birth of a child with a disability may be analysed according to three phases, namely, primary, secondary and tertiary. The primary stage constitutes the initial reactions of shock, denial, mourning, grief and depression. The secondary phase involves feelings of guilt and self-blame, anger, fear, frustration, embarrassment, confusion and shame. The tertiary stage entails bargaining, adaptation, reorganisation, acceptance and adjustment.
Many researchers agree that the following are some of the emotional responses commonly experienced by parents on discovering that their child is deaf: shock, grief, denial, projection, anger, guilt, fear and depression, despair, frustration, bargaining, and finally acceptance (Ross et al., 2004: 156; Scheetz, 2001: 60-61; Schirmer, 2001:
27; Kricos, 2000: 279; Marschark, 1997: 78-79; Gascoigne, 1995: 13-17; Dysart, 1993: 31-33; Luterman, 1991: 146-147; Vernon & Andrews, 1990: 125-128). Hearing parents of deaf children go through “stages of grieving” similar to the stages of
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grieving experience by dying patients, described by Kübler-Ross (in Ross & Deverell, 2004: 36; Ross et al., 2004: 156; Kricos, 2000: 279). These “stages of grieving”, which include denial, anger, bargaining, depression and acceptance, are important for the bereaved to work through in order to help them come to terms with the bad news.
Shock is almost always the first response that parents experience on learning that their child has been diagnosed as being deaf. They may initially suspect that something is wrong but when their suspicions are medically confirmed, the reality can be traumatic (Ross et al., 2004: 36; Wall, 2003: 31; Scheetz, 2001: 60; Schirmer, 2001: 27;
Gascoigne, 1995: 17). On the other hand, the discovery that their child is deaf may come as a relief to some parents, as they realise that it could have been something worse (Marschark, 1997: 78).
Grief is a natural reaction when there is pain, disappointment or loss. Grieving is not an end result but rather, an on-going process. It continues throughout the life of a person whose dreams are shattered or whose aspirations for the future are not realised.
In the case of parents whose children are diagnosed as deaf, their grieving usually results from the loss of a dream of a ‘perfect’ child and a ‘normal’ family life (Meadow-Orlans et al., 2003: 47; Scheetz, 2001: 60; Marschark, 1997: 78; Gascoigne, 1995: 16). Grieving and mourning often result in depression. Meadow-Orlans et al. (2003: 46) maintain that it is understandable for families to grieve when they learn that the child has a disability with far-reaching consequences.
Denial can serve the purpose of a defence mechanism or shock absorber initially, as it allows parents time to stall in order to absorb the shock of the diagnosis of deafness and its implications. Denial is used to “buy time needed” to find inner strength, information and support needed to cope with the situation (Ross et al., 2004: 37).
Denial may be regarded as a short-term defence mechanism that is usually soon followed by a certain measure of acceptance. Denial “may serve as an emotional buffer” which allows the grieving individual time to come to grips with the loss and draw on inner strength to come to terms with it (Kricos, 2000: 279). Parents may go through a period of disbelief and may feel that the diagnosis could have been incorrect and that the mistake would be found and rectified. Parents may manifest signs of
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denial in various ways. Some may accept the diagnosis but deny the implications of deafness. Others may deny that the ramifications of the diagnosis have any effect on their feelings. Denial is often used as a coping mechanism (Wall: 2003: 31; Scheetz, 2001: 60; Mertens et al., 2000: 140; Marschark, 1997: 78; Gascoigne, 1995: 14;
Dysart, 1993: 31; Kapp, 1991: 347).
Kricos (2000: 279) states that it is relatively easy to deny deafness as it is invisible.
Moreover, parents may deny the original diagnosis and resort to “shopping” for a more acceptable professional opinion, by taking the child to other professionals and clinics.
Denial indicates the unwillingness on the part of the parents to accept the child’s hearing loss. This is frequently the case where the degree of hearing loss is less serious. The parent tries to minimise its effect by disregarding problems that the child might be going through as a result of diminished hearing. The parent may expect the child to perform at the same rate as a child with no hearing loss. This could adversely affect the progress of the deaf child (Kapp, 1991: 347).
Anger is an emotion that is probably most destructive in the early stages of diagnosis of deafness. Many parents repress it, which could lead to depression. The loss of control and helplessness parents feel can lead to marital conflict as well as conflict in their interactions with others (Marschark, 1997: 78; Gascoigne, 1995: 16; Luterman, 1991: 146). When the stage of denial can no longer be maintained, feelings of anger, rage, resentment and envy set in (Kricos, 2000: 280). When parents feel that they have been dealt an injustice, they experience intense anger which is sometimes displaced.
“They may question what they have done to merit the birth of a less than perfect child”
(Scheetz, 2001: 60).
Anger originates from feelings of hurt and inadequacy when parents do not experience the satisfaction of observing the child’s attainment of developmental milestones, or if these are diminished. Anger is also generated from feelings of despair and confusion, bitterness and frustration that parents feel in a situation of helplessness as the realisation of the implications of deafness dawns upon the parents (Gascoigne, 1995:
16). An attitude of continual anger can cause bitterness and strain even in the strongest of relationships (Scheetz, 2001: 61; Marschark, 1997: 78; Dysart, 1993: 32).
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Guilt, according to Ross et al. (2004: 38), is normal and necessary in the grieving process. It usually follows anger, when parents attempt to rationalise the consequence of having a deaf child. At some stage most mothers of deaf children feel responsible for the child’s deafness (Meadow-Orlans et al., 2003: 48; Scheetz, 2001: 60; Kricos, 2000: 280; Levine, 1992: 96). Mothers tend to blame themselves and harbour feelings of guilt over their own poor behaviour towards the child and other family members (Marschark, 1997: 78). According to Luterman, (1991: 146) guilt is “potentially destructive to a marriage if it is not recognised and dealt with effectively”. Although both parents feel guilt, mothers seem to carry a heavier burden of this emotion (Gascoigne, 1995: 13).
Guilt is an uncomfortable feeling, and so parents may try to blame each other.Dysart (1993: 31) refers to this as projection, which is “the next safety valve after denial, and involves shifting blame on someone else”. These accusations can give rise to mixed emotions of anger, guilt or hurt feelings. Parents often try to conceal their emotions, but from time to time these surface, and give rise to explosive situations that can create stress within the family.
Sometimes guilt triggers the search for a family history of deafness in an effort to pinpoint the cause (if unknown) of deafness in their child. In some cases, parents’
feelings of guilt can cause them to be overprotective of their deaf child. Overprotection can work against the child becoming independent, as parents feel obliged to do almost everything for the child, thereby depriving him/her of the opportunity to maximise his/her potential. Ross et al. (2004: 156) state that parents who are aware of the cause of deafness tend to cope better with feelings of guilt than parents who are not. Parents may find themselves blaming not only themselves or each other for their child’s deafness, but also God or fate.
Parents may try taking their child to faith healers and ‘negotiating’ with God for a miraculous restoration of hearing (Ross et al., 2004: 37; Marschark, 1997: 78). Crowe, as well as Seligman (in Ross & Deverell, 2004: 37), refer to this as “bargaining”.
Some parents may believe that they are being punished for a sin committed previously, or that they are not good enough to deserve a child without a disability. They may
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resort to bargaining with God, health professionals, clinicians or family, and vow to do whatever is requested of them in return for an amelioration of deafness. Prolonged periods of bargaining and parents’ false hopes may be detrimental to the physical and emotional well-being of parents “who set unrealistic demands for themselves” (Kricos, 2000: 280).
Fear and depression usually set in once the feeling of anger subsides. Moses (in Ross
& Deverell, 2004: 38) defines depression as “anger turned inwards towards oneself”.
Depression is often accompanied by confusion and embarrassment as parents realise how little they know and understand about deafness. The implications of having a deaf child can be frustrating when parents realise the limitations imposed by deafness.
People suffering from depression often regard themselves as “impotent, incompetent, incapable, and of little value” (Ross & Deverell, 2004: 38). In some cases, depression can last for years, becoming virtually a life sentence of isolation. “Only after chronic depression is seen for what it is – self-imposed exile from the human race” – can it be overcome (Dysart, 1993: 33). Fear of embarrassment could set in when parents have to take their deaf child out in public. Fears for the future of the child emerge as parents begin to wonder about their child’s prospects for employment and marriage. Questions arise as to whether deaf people can work, or marry and start a family, or have normal intellectual capacity to receive an education. Another fear that grips parents pertains to the question of what would happen to the child in the event of their demise (Vernon &
Andrews, 1990: 130).
Acceptance comes once the depression has abated. Once parents are able to confront their initial suspicions about their child’s deafness, they usually begin to resolve their initial negative emotions. While some family members go through the stages of grief as if the child is dead, others never get over the grieving. They remain angry or in denial, burdened with a sense of guilt, or blame someone else, and never reach the stage of acceptance (Ross & Deverell, 2004: 40; Scheetz, 2001: 62). It is only when they reach this acceptance stage that they can deal with the challenges that they can face in life.
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The question arises as to how long it takes to arrive at the acceptance stage. The duration between initial diagnosis and the acceptance stage may differ amongst parents for various reasons. It is important to know that it is only when the acceptance stage is reached, that the problems of hearing loss can be handled effectively (Dysart, 1993:
33). Suffice to say, the sooner the parents reach the stage of acceptance of their child’s deafness the better, so that preparation for their child’s development and education can begin in earnest. Parents who embrace an attitude of wholesome acceptance are realistic about the consequences of their child’s deafness. They realise what deafness entails and develop a positive mindset about coping with problems that may arise.
“This is the ultimate goal all parents strive to obtain” (Scheetz, 2001: 63). However, parents’ grief may resurface each time the child experiences a major milestone such as starting or leaving school, or entering adolescence (Ross & Deverell, 2004: 40).
In conclusion, Luterman (in Ross et al., 2004: 156) states that much of the literature points to the need for parents to go through the “stages of grieving” and “mourn the loss of a normal child” so that they will be able to adapt to the child’s disability. The rationale underpinning this is based on the belief that the bereaved will eventually stop grieving and accept the situation. However, Luterman (in Kricos, 2000: 282) cautioned that the “stages of grieving” concept has been oversimplified in many respects and overused in the counselling of those with communicative disorders. Mapp and Hudson (in Kricos, 2000: 282) suggest that there is a likelihood of parents experiencing high levels of stress upon initial diagnosis of deafness, but most parents are able, through various coping strategies, to reduce stress within a short time.