2.7 PARENTING AND THE DEAF CHILD
2.7.2 Parenting and the family
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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.
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Ross et al. (2004: 155) and Marschark (1997: 15-16) draw attention to how the birth of a deaf child reshapes the hearing family and point out the need to keep in mind that the entire family is affected by the new situation. Ross et al. (2004: 155) maintain that
“deafness reverberates throughout the family, with the deaf individual touching and shaping the lives of all family members”. The hearing family’s adjustment to the arrival of a deaf child will have a variety of practical, emotional, and financial ramifications. After a period of adjustment most families with a deaf child function quite adequately, although at the outset, this might seem impossible. Apart from the need to learn and use sign language consistently, life goes on naturally with relatively little disruption to normal family routines (Marschark, 1997: 79).
2.7.2.1 Mother and the deaf child
In general, mothers take greater responsibility for the upbringing of their children. It would seem that in the case of raising deaf children this responsibility is intensified.
This section will focus on hearing mothers and their deaf children, and how their lives are affected as a result of their children’s deafness.
Meadow-Orlans and Sass-Lehrer (1995: 7) draw attention to the effect of the deaf child on the life of the hearing mother. The deaf child invariably becomes more dependent on the mother than on other members of the family which imposes additional responsibilities on her, as she is unable to cut herself off physically or emotionally from the care of the child through outside activities.
Research reveals that mothers of deaf children are more likely than fathers to learn sign language. Therefore, the mother assumes greater responsibility for the care of the deaf child in families that choose to sign (Meadow-Orlans & Sass-Lehrer, 1995: 318).
Hadadian and Rose (in Kricos, 2000: 283) found that mothers have far more interaction and contact with deaf children than do fathers, and that hearing mothers play a more active role than fathers in sign language and communication. Research has revealed that mothers who receive practical and emotional support from family and friends are able to cope better with the demands of having a deaf child (Marschark, 1997: 16).
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2.7.2.2 Father and the deaf child
The importance of the father’s role in the upbringing of the child cannot be sufficiently stressed, more so in the case of the deaf child. Since fathers generally are the main breadwinners, they may be less involved due to their work commitments. Their parental role may take the form of supporting the mother in caring for the deaf child, providing a stable home where the child is made to feel safe, and catering for the material needs of the child. Yet today it is not unusual to find that both parents work outside the home.
Fathers may react differently to the diagnosis of the child’s deafness, depending on various factors. Cunningham and Davis (in Levitz, 1991) maintain that a child born with a disability causes greater shock to the self-esteem of fathers because of “socio- cultural values such as manhood, independence, competitiveness and achievement”.
An alternative explanation, according to these authors, is that mothers are given a greater degree of support from specialists and service providers dealing with handicapped children and are better equipped for child care because of experience. In this regard Herbert and Carpenter (in Wall, 2003: 29) draw attention to the marginalisation of the father, since professional help is focussed on the mother and child, effectively ignoring the father’s needs.
Wall (2003: 27), in explaining why fathers may be being less involved, mentions that in most cases, identification, assessment and programmes for intervention of special needs take place during working hours and this may exclude many working men from attending or participating. Therefore, their understanding of discussions regarding the issue are “often second-hand and may lack clarity and/or depth”. Once the child’s deafness is diagnosed the father generally obtains most of the information from the mother, who plays the primary role, while the father’s role diminishes gradually into a secondary one. This can evoke feelings of resentment and anger on the part of the mother who is compelled to take most of the responsibility in caring for the deaf child.
The father who feels neglected may vent his anger and frustration on the deaf child or mother (Ross et al., 2004: 160). The father’s role is seen as a supportive one and hence he is expected “to be the strong one”.
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2.7.2.3 Siblings and the deaf child
Siblings are also affected by a deaf child in the family and may respond differently to having a deaf brother or sister. Atkins (in Ross et al., 2004: 160) maintains that from a family system perspective, one can better appreciate the complexity of sibling interactions, since “what happens to one or another of the brothers and sisters reverberates throughout the family”.
Farber (in Ross et al., 2004: 160) found that a child with a disability, irrespective of the ordinal position in the family, was treated as the youngest. Siblings may also be expected to perform better at school, sport, or in their careers to make up for the child with a disability. Sisters of a child with a disability are generally expected to take on more family responsibilities than are brothers, since much of the mothers’ time is taken up in caring for the deaf child. Atkins (in Kricos, 2000: 283) draws attention to some of the reasons to be concerned about siblings of deaf children. These include:
• their parents, because of time demands in caring for the deaf child, being less involved with them
• the fatigue, pre-occupation, and worry of parents detracting from a satisfying relationship with hearing siblings
• the perception that the deaf child is not disciplined by the parents
• possible feelings of guilt and responsibility for their sibling’s deafness
• added responsibilities with regard to house-hold chores, and taking care of the deaf sibling.
Carpenter (in Wall, 2003: 35) identified seven major concerns of siblings of young children who have special needs, which concur with the views of Atkin’s (in Kricos, 2000: 284). These include:
• the need for age-appropriate information about the disability
• feelings of isolation from information given to other members of the family, as well as isolation from siblings from other families with similar problems
• more demands to help care for their sibling
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• perceptions of guilt about causing the problem in some way, or not being there to help parents care for the sibling when they leave home
• feelings of resentment since the sibling with special needs receives a greater degree of parents’ attention and time
• feelings of being pressurised to achieve highly to make up for the expected low level of achievement of their sibling with special needs
• anxiety about their own as well as their sibling’s future.
On the other hand, Schwirian, according to Meadow (in Ross et al., 2004: 160) found that in the case of older siblings of pre-school deaf children, there was little impact on their level of independence, privileges, social activities, or child care responsibilities.
However, results of studies by Israelite (in Ross et al., 2004: 160) suggest that some aspects of psychological functioning on the part of siblings may be affected as a result of having a deaf child in the family. Featherstone (in Ross et al., 2004: 160) adds that hearing siblings may be embarrassed and experience feelings of social isolation, while others may feel worried about contracting the disability, or about their own future, and about becoming parents of a child with a disability.
Gregory, as well as Meadow (in Ross et al., 2004: 160) found that the majority of mothers indicated that they were more lenient with their deaf children than with their hearing children, in terms of discipline. Siblings of deaf children were reported to experience more envy, than siblings of other children with other disabilities. They are frequently forgotten and tend to receive relatively less attention than they did before the deaf sibling’s diagnosis. It is important for parents and children to maintain normal interactions within the home and for the entire family to work together with patience and understanding.
Research on siblings of children with disabilities other than deafness, shows that they may be positively or negatively affected by the child’s disability (Kricos, 2000: 284).
Tattersall and Young (2003: 109) point out that much previous literature portrayed a very negative picture of the impact that children with disabilities have on their siblings e.g. the extra demands foisted on them with regard to caring for the child, a burden
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which they are not prepared for physically or emotionally, and which hinders their social activities outside the home.
However, recent literature paints a more positive image, e.g. the enrichment that children with disabilities bring to the lives of their siblings, making them more tolerant, social, and mature in their behaviour and attitude, as well as more understanding, in particular of people with disabilities (Tattersall & Young, 2003: 109;
Wall, 2003: 35).
The way in which the parents manage a child with disabilities as well as the siblings will differ from family to family, depending on their unique contexts and circumstances. What is important is that siblings should not be made to feel neglected as a result of parents giving more attention to a deaf sibling.
2.7.2.4 Grandparents and the deaf child
The role of grandparents cannot be underestimated as a resource in the successful development of the deaf child, even though their reactions to the diagnosis of the grandchild’s deafness may vary. Wall (2003: 33) emphasises the critical role played by grandparents in the life of children with disabilities. However, relationships may differ from one family to the next, and parents and grandparents do not always enjoy healthy, supportive relationships.
Like parents, grandparents feel grief, loss and disappointment when a grandchild is diagnosed with deafness, and they need to review their relationships with their deaf grandchild and the child’s parents. Further, they need help in reassessing their own role, with a view to “remaining supportive and encouraging while not attempting to shield their children from reality” (Moorton, 2000: 364). A survey conducted by Moorton (2000: 364) showed that parents valued the support of grandparents, and the results can be seen as an indicator that early parental involvement and the inclusion of grandparents in the education of the deaf child “can yield significant benefits”, as it can unite families “and provide a solid emotional base for the growth and development of the whole deaf child”.
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Kricos (2000: 285) states that grandparents may become anxious about their own child’s ability to cope with the increased responsibilities. Vadasy et al. (in Kricos, 2000: 285) found that nearly half of the grandparents in their study continued to experience feelings of sadness long after the initial diagnosis. Meadow (in Ross et al., 2004: 161) states that grandparents may interact with deaf children in a positive or negative manner. If the deaf child is the first grandchild they may experience disappointment and grief, as their attempts to realise their own unfulfilled dreams for their children through their grandchildren become thwarted when the child’s deafness is diagnosed. On the other hand, grandparents can be the source of additional support in helping to care for and raise the deaf child. Wall (2003: 33) concurs with this view, adding that some grandparents today play a greater role in their grandchildren’s upbringing, “spending the most time with them and supporting them through various key changes and stages” while parents go to work.
2.8 THE CHILD’S DEAFNESS AND THE EMOTIONAL WELL-BEING OF