Charles was Catherine and Chris' first child. Chris had been somewhat ambivalent about fatherhood, not knowing if he was prepared for the responsibility. However when Charles arrived all of his doubts dissipated as he became overwhelmed by the joy and wonder of his son's birth. Within an hour Catherine and Chris learned of their child's condition - Charles had the very marked features of Down syndrome.
Samuel was the youngest of seven children. At the age of seven months his development was precocious, and he was endeavouring to walk. One morning he was late to awaken, but his parents, Sally and Stephen, were not concerned - in a family as large as theirs, a sleeping baby is a blessing. When they did check, panic ensued. Samuel was cold, clammy, blue and having difficulties breathing. He had contracted Hib meningitis, went into coma and, soon after, septic shock. He was eventually off the critical list, but his parents were told "He has severe brain damage and will do nothing. He will never be any different from the way he is now". At that point, Samuel could not even lift his head.
Joel was found at the bottom of a swimming pool just before his second birthday. It was a very cold day and no one knows how long he was there. Resuscitation took twenty minutes and, for weeks, he was expected to die. His parents, Jill and John, were informed that if he did live, his brain damage was so severe, he would be "a vegetable". He eventually showed signs of improvement, but it was suggested to his parents that an institution might be the best place for him as he would most likely succumb to pneumonia before long. He was taken home to be part of his family which included a baby sister.
These families were known to me - I was their Community Nurse.
There are a number of theoretical underpinnings which inform practice in this area, and which provide interpretations of parents' responses.
My practice as a Community Nurse led me to review and question my own assumptions and the conceptual base from which professionals view the impact of disability on the lives of families. I found that frequently I was unable to relate to the labels which were applied to parents and that, by and large, such families managed their lives in a cheerful and constructive fashion. This is not to say there was no pain - there was, and is, but the parents mainly dealt with it. Some parents made an enormous impact on me by virtue of their energy, strength, optimism and humour.
A starting point was provided by Amanda, Annie's mother, who constantly confounded me with her remarkable optimism in the face of enormous and persistent difficulties, and with her frequent extraordinary insights into the human condition. In recalling the frustrations following the birth of Annie, she said:
I had my research question, and set out to explore Amanda's "other reality".
A qualitative study, in which six parents spoke intimately and at length about their experiences was undertaken. The theoretical background which informed the research approach was drawn from phenomenology (Anderson, 1991; Husserl, 1970; Oiler, 1982; Van Manen, 1990), which enables us to view the subjective inner world of personal meanings and experiences from the perspective of the person who owns the experience (Bartjes, 1991), in this case, the parents. By placing the research in the parents' context, they had the control and freedom to explore the meaning of their experience, and a broader, fuller and deeper description of the complex phenomena which make up their experience was made possible. We had lengthy, unstructured discussions in which the parents were asked to tell me of their "experience".
These parents painted a picture which is at odds with many of the commonly held notions about living with a child with significant disability. Whilst recognising the sadness and difficulties engendered by their situation, these parents speak of strength, joy, love and hope. We are describing their overall state of being as one of "between joy and sorrow". This is an umbrella term under which lay other themes and elements. They do speak of having no hope and thus, sometimes despairing, but overwhelmingly they are hopeful and behave in ways which indicate a "defiance" of the implications of their children's conditions. They are clear about understanding and accepting their children's diagnoses, but will not accept the prognoses. They claim they are not "denying" but "defying", as such a state enables them to have hopes and dreams, without which they could not function.
In telling their stories, the parents presented an initial overwhelming picture of "no hope". It was clear that they were being inundated with messages of hopelessness from the people they were in contact with, and that the professionals with whom they worked were often responsible for their feelings of isolation, rejection, despair and hopelessness. The voices of the parents speak for themselves.
These parents speak of their children in glowing and hopeful ways:
Their views are frequently at odds with the perceptions of professionals. The parents report the sometimes subtle, and sometimes not so subtle expectations of professionals to "be realistic". They recognise that professionals have a commitment to provide honest information and advice, but believe that the professional endeavour to be truthful and realistic, frequently leaves no room for hope. This makes them angry. They are aware that their optimistic function leaves them open to accusations of "denying reality", but hotly defend their stance. My interpretation of their optimistic outlook is not one of "denying reality" but rather one of a realistic grasp of their situations, which goes hand in hand with a recognition of a need to maintain hope and optimism in order to remain functional.
Taylor (1989) has contributed a large body of work which relates to peoples' ability to benefit from tragedy. She questions the long-held assumption that accurate perceptions of reality are a critical component of mental health and challenges the established wisdom. Her research indicates that normal human thought and perception is marked by positive, self-enhancing illusions about the self, the world and the future. These she calls "positive illusions", and believes they are instrumental in enabling people to overcome adversity in their lives. Brown (1993) raises the question of these positive illusions being merely defence mechanisms in disguise, but draws a distinction based upon defence mechanisms being unconscious and involving distortions of reality, whereas positive illusions are a cognitive reinterpretation which are subject to control and revision and, as such do not involve major distortions of reality, but rather involve variations in how reality is interpreted or represented. They are seen as strategies which enable people to feel better and function more effectively. Counsins (1989) says that an optimistic outlook does not necessarily equate with a denial of reality. He provides an interpretation which is based upon an understanding of reality, but a refusal to accept the implications which this reality suggests.
If practitioners have a comprehensive theoretical base and recognise people as individuals, we are much more likely to make meaningful interpretations and provide parents with the constructive support they require from us. A practical application of such a broadening might be to assist parents of a child with cerebral palsy in their search for a therapist who will enable their child to walk, rather than labelling such parents as "unrealistic" and "non accepting" and referring them to a counsellor who will enable them to "accept" and "come to terms with reality". I do not believe it is up to us to make judgements about what will happen and what will not happen - there are always those who will defy the odds. If parents choose a paradigm of optimism, then we can support them in their struggle to defy the implications of their children's devastating diagnoses.
Charles lives with his mother (Chris has opted out), and he is a very warm, loving and engaging child, as well as being most handsome. He walked after his third birthday and, at five, is learning to speak. His greatest hurdle at the moment is learning to pull up his pants without toppling over, as he is very hypotonic. This is in preparation for his attendance at "big school" next year. His large, extended family love him, as does his father who maintains close contact with him and his new sister.
Samuel is very blonde, has pale blue eyes and is sturdy for his four years. His favourite activity is running, which can be hazardous for him as he is blind. It is hard for him to concentrate, so he learns very slowly. He does not speak and vocalisation is a big effort for him. He has seizures which have proved difficult to control. He is adored by his parents and his six brothers and sisters, who take great pride in his achievements brought about by his own fierce determination.
Joel is four years of age and has looks and personality that take you breath away. He has silken blonde hair, limpid brown eyes, cupid lips and a smile which wins all. He is very floppy (like a bowl of spaghetti) and is working very hard at learning to crawl, but is able to roll around the floor and pull himself up onto furniture. His vision is impaired (but improving), and he is struggling with language. He is a happy and highly interactive little boy who fills his parents with joy and admiration.
It was the parents of these four children who spoke to me of the "joy and sorrow" of their being.
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Lecturer in Nursing,
Department of Disability and Mental Health Nursing,
Faculty of Nursing and Health Studies,
University of Western Sydney, Nepean,
P.O. Box 10,
Kingswood. NSW. 2747.