Exploring perspectives of South African fathers of a child with Down syndrome
- Authors: Webber, Heidi
- Date: 2017
- Subjects: Parents of children with disabilities -- Attitudes , Parenting -- Psychological aspects Down syndrome -- Care Mental retardation
- Language: English
- Type: Thesis , Doctoral , DEd
- Identifier: http://hdl.handle.net/10948/13535 , vital:27220
- Description: A mere glance at a family photograph of the Victorian era leaves little doubt of the position of the figure exuding impervious, authoritarian detachment. Austere, rigid and solemn, it is not hard to guess who cast the shadow over the picture. Arrestingly imposing in his role as backbone of the family, this is the nineteenth century legacy image of the father. However, the last century has seen fatherhood redefine itself and the more liberal, lenient and openly loving figure replaced the strict patriarchal model. In contemporary times, fathers are regularly seen comfortably behind a stroller, outdoors with children on their shoulders, at home tousling with their children, and considerably more involved in school and social events. Unashamedly, fathers have moved toward both acknowledging and displaying a softer paternal image. By definition fatherhood is a decidedly individual concept and a unique experience, involving much more than being the male parent in a family, the family protector, or the provider of paycheques. Although the past decade has seen a surge of research and interest in fatherhood with an increased recognition that the involvement of fathers contribute to the well-being, cognitive growth and social competence of their children, there remains a deficit in research on the experiences, perceptions and involvement of fathers of children diagnosed with Down syndrome. And whilst most of this knowledge base is extrapolated from studies about the mother’s experience, true understanding requires that fathers are studied directly. Mothers and fathers respond differently to the pressure associated with raising a child with Down syndrome and literature supports the common view that men are less likely and easy to engage in therapy than women, are less likely to attend therapy, or seek help for physical or psychological problems. For fathers of any differently abled child, the distance between the idealized fathering experience and the actual one may be enormous. Based upon the patriarchy model of the family, in many conventional homes, the wife and mother is like a thermometer, sensing and reflecting the home’s temperature, whilst the father and husband is like the home’s thermostat, which determines and regulates the temperature. The equilibrium of the father plays an important role in his ‘thermostat settings’ to set the right temperature in the marriage and his family. Having a differently abled child is almost never expected and often necessitates a change in plans as the family members adjust their views of their own future, their future with their child, as well as how they will henceforth operate as a family.Some fathers may experience uncertainty about their parenting role of a child diagnosed with Down syndrome, often resulting in peculiar behaviours of the father. This may include engrossing themselves into their work, hobbies, sport, and so forth, almost abdicating their duty as father; believing that the mother knows best (sometimes using their own lack of knowledge as a cop-out); or, they simply withdraw because the mother takes such complete control of every aspect of the child that the father feels inadequate, superfluous, and peripheral as parent. Each parent grieves the ‘loss’ of the child they expected in their own individual way. However, such a highly emotive situation may be compounded by the following aspects: the undeniable pressure of caring for the differently abled child; the additional financial burden; a waning social life; and, the incapacity to cope emotionally whilst invariably displaying the contrary purely to create the illusion that they are indeed coping. Fathers need to develop strategies and skills to cope with the very real and practical needs of parenting their child with Down syndrome, to furthermore minimize relationship conflict and misunderstanding, and to support their child’s optimal development. How these specific issues are embraced and managed may dramatically influence the peace and harmony of family life as well as the marital relationship. This study explores the perspectives of fathers of a child with Down syndrome to ultimately support this unique journey as they navigate their way through “Down”town Holland, as illustrated in the analogy to follow.
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- Date Issued: 2017
The impact on the family dynamic of having a child and sibling with Down syndrome
- Authors: Webber, Heidi
- Date: 2011
- Subjects: Down syndrome , Children with disabilities -- Family relationships
- Language: English
- Type: Thesis , Masters , MEd
- Identifier: vital:9495 , http://hdl.handle.net/10948/1441 , Down syndrome , Children with disabilities -- Family relationships
- Description: The raison d'être of my research is simple: it’s about tossing one more starfish back into the surf. Down syndrome is not a disease, nor is it contagious or a death sentence (it only feels that way when you find out for the first time). At the moment of conception, the apprearance of extra genetic material results in a total of 47 chromosomes in every cell. Usually each cell has only 46, thus making an individual with Down syndrome far more like others than different from them. Yet, this extra chromosome presents special circumstances regarding their ability to acquire new skills, be it academic or practical, encompassing a specific learning profile with typical characterisitcs, strengths and weaknesses. Twenty-first century family life is simultaneously challenging and richly rewarding and the expectancy of most families are of a life lived on paved highways with well-marked signs, and rest stops never far apart. Adding an extra chromosome to the luggage sends the family travelling down a vastly different highway instead, not always knowing what is ahead. It’s scary, but in reality even those on the wide smooth roads do not know the future. Echoing the feelings of many parents, Leonard (1992: 5) states, “The trouble is that we have few, if any maps to guide us on the journey or show us how to find the path…” Assumptions from previous decades that used to increase stress associated with rearing a child with Down syndrome would negatively impact on individual family members and the family unit as such. This has made way for the growing consensus that it is not necessarily the norm. Whilst some families have trouble in adapting to the increased stress, other families adjust easier and even thrive. Successful adaptation seems more likely in resilient families who enjoy high levels of parental well-being and strong relationship bonds. Findings of this qualitative research study confirm that unresolved marital strains are more likely to result in divorce as opposed to the birth of their child with Down syndrome. Correspondingly, siblings of children with Down syndrome reported mostly positive impact than negated opportunities to participate in a normal childhood. My motivation for this research was to explore the nature of challenges faced by modern families and to provide mechanisms to facilitate positive adaptation for the family and aid vii inclusion of the child with Down syndrome into school and greater society. Recommendations are also presented for the medical professionals who, ironically, have proved to be the last people parents want to go for support, owing mostly to their decidedly objectionable treatment of parents; as well as the generally uninformed public, who seldom understand or support attempts of parents to include and expose their child to everyday experiences. In conclusion, I summarize: Should it be that I may influence but one person to see persons with Down syndrome for the potential that they hold instead of the associated problems of their condition, this would afford me the satisfaction and contentment knowing that I have succeeded in making a positive contribution to their plight. I would have successfully portrayed the families for the ordinary people they are with anticipations, aspirations and anxieties, but later tasting the elation of being empowered, and the resultant enjoyment and pride of the achievements of their extraordinary “starfish” child. The simple story below explains it all. A little boy was walking on the beach when he noticed scores of starfish washed onto the beach by the previous night’s high tide. He curiously watched as an old man bent down, came up slowly and tossed one starfish after the other into the surf. He went closer to investigate. “Excuse me, sir, what are you doing?” he enquired. The old man said: “I am throwing the starfish back into the ocean before they die, my boy…come, lend a hand”. The boy looked up and down the beach at the hundreds of starfish scattered along the shoreline. “But there’s too many…” said the boy, “it’ll make no difference!” The old man smiled, bent down, picked up another starfish, and carefully tossing it into the clear blue water, he replied, “…It makes a difference to this one…”
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- Date Issued: 2011