Parents' Experience of Developmental Disability:

Challenging the Assumptions

Penny Kearney, Faculty of Health Studies, University of Western Sydney, Nepean, P.O. Box 10, Kingswood, NSW.2747
Paper presented at: The Adventures of Nursing Practice through Research: A Brave New World, Royal College of Nursing, Australia, Sigma Theta Tau, Congress, The University of Sydney, 11-13 July, 1994.

Pictures of the Children

Annie was Amanda and Alan's longed-for first child. When she was born she was non- responsive, floppy and unable to feed. Her prognosis was poor and she was not expected to survive. When she was a few weeks of age her parents took her home and they were told to just give her plenty of love, the implication being that she would die shortly. In fact, their baby clinic nurse told Amanda that it would be" better if Annie just faded away". It transpired that Amanda had viral meningitis during the first trimester of pregnancy.

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.

Assumptions

I practised as a Community Nurse in Developmental Disability Services which brought me into contact with hundreds of families who had children with significant disabilities. My own experience as a human being and as a mother told me that to have such a child would be a tragedy. This is something we all "know". These assumptions are supported in the literature which depicts such a situation as an overwhelmingly tragic life event whose impact on the lives of families is inevitably negative (Blumel, 1988; Chetwynd, Calvert & Boss, 1986; Collins-Moore, 1984; Ehlers, 1966; Erickson & Upshur, 1989; Featherstone, 1980; Flynt & Wood, 1989; Mercer, 1990; Sherman & Cocozza, 1984). This assumption has led researchers to focus on stress measures and the documentation of the effects of the burden of care (Summers, 1988). The literature describes parental reactions of fear, denial, anger, frustration, guilt, grief and mourning, following the initial impact of diagnosis of severe impairments in a child. This is seen as just the beginning of a chronic and relentless stress which is accompanied by a continued sadness. Implicit in this view is an assumption of distress and dysfunction in families (Beckman, 1991).

There are a number of theoretical underpinnings which inform practice in this area, and which provide interpretations of parents' responses.

Time-bound models of grief and mourning

These have been developed by a number of people (Bowlby, 1980; Engel, 1961; Kubler- Ross, 1969; Lindeman, 1944), but a representative model (Clubb, 1991) describes a linear and temporal sequence of:

The central and important concept in this model is that of "acceptance", which is implicit in a healthy adjustment, the corollary being that failure to "accept" is maladaptive, pathological and requires intervention.

Mourning the loss of the "perfect child"

Psychoanalysts, Solnit & Stark (1961), examined the concept of mourning as it relates to object loss, in this case, the loss of the longed for, perfect child, and conclude that pathological responses to the birth of a "defective child" are to be expected.

Chronic Sorrow

Olshansky (1962) developed the concept of "chronic sorrow" to describe a pervasive psychological phenomenon observed in parents of mentally retarded children. He contends that parents adapt, in a functional sense, to their child's condition, but do not accept it. This concept, in recent times, has been adopted by a number of writers (Clubb, 1991; Fraley, 1990; Teel, 1991) to provide an explanation of responses of families dealing with chronic conditions.

Psychoanalytic Theory

Professionals whose training has its roots in psychoanalytic theory can easily interpret parents' responses to stress and anxiety as defence mechanisms which include projection, displacement, denial, sublimation and repression (Brown, 1993).

Practice

Practitioners are informed by a background of expectations drawn from their theoretical preparation and their own experiences. These expectations, in turn, inform our interpretations of the events in the lives of our clients. The unquestioning use of theoretical underpinnings (such as the above) to interpret and explain the behavior of parents of children with disabilities has had many negative implications for these families. Parents are all too frequently labelled as having pathological responses to their children with disabilities. In my own experience, "denial" was the most frequently used label, accompanied by explanations which related to lack of "acceptance". Expressions which are frequently used include:

"They're denying reality",
"They're not being realistic",
"They won't accept the child",
"Until they accept, they'll never get anywhere",
"They're shopping around, looking for someone who'll say there's nothing wrong".
 Other labels relate to guilt, unresolved grief, and overcompensation, if parents' words and behaviors are interpreted as not meeting the professionals' demands for "acceptance" and "being realistic", then their reactions are rarely viewed as positive or adaptive. Anything which is suggestive of parents "denying the reality" is certainly viewed as dysfunctional

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.

Research

This broad and interwoven base of personal assumptions, theory and practice had large gaps in terms of being able to understand the experience of parents who have children with disabilities. I was ready to explore, but needed a starting point and some structure. An "adventure of nursing practice through research" was the obvious solution!

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 knew her condition was serious and her prognosis poor, but to me, she was my firstborn, beautiful child. Every time I expressed my joy to the staff at the hospital, they said, 'She's denying reality!'. I understood the reality of my child's situation but, for me, there was another reality."

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.

 "...yes, yes you have given birth and this is actually a reject child. 'Try for another one' they say almost immediately". (Amanda)
"I've got a friend... and her almost spontaneous reaction was 'Are you going to keep him?"' (Catherine)
"When he was feeding, when he started to feed, they still wouldn't acknowledge that he'd even changed at all... we were told we could do absolutely nothing ... and the doctor said 'Well, there's nothing we can do. Take him home"'. (Jill)
"...if he lives, he'll have massive brain damage, he'll be a vegetable". (John)
"I was told that night that he had massive brain damage and would never do anything, be no different to what he was there. At that stage he couldn't even hold his head up". (Sally)
"...after he had come out of the coma, we were hit with the fact that he was going to be a vegetable". (Stephen)
In light of such negative attitudes from friends, family and acquaintances, and such hopeless prognoses from professionals, it would seem reasonable to anticipate that these parents would be immobilised by a sense of despair and hopelessness. And yet, despite their acknowledged periodic pain and sorrow, they maintain hope which has enabled them to view their situations and their children with optimism. They have struggled and fought to ensure their children's survival and development, and have experienced the joys of countless successes. They have done this despite the odds, despite the negative attitudes of others, despite the lack of ready availability of therapeutic services, and despite prognoses which indicated that their children would "do nothing".

These parents speak of their children in glowing and hopeful ways:

"Her whole way of developing and learning is unique to Annie. She does it very, very well. She's a fighter..." (Amanda)
"Charles has always been, you know, a beautiful, responsive, warm child, so you get the beautiful, responsive, warm child goodies..." (Catherine)
"...I will do those things with him, but when he gets up and walks around. He will. He's got guts." (John)
 They describe them as beautiful, happy, affectionate, gutsy, cheerful and charismatic, and they bring feelings of great pride, love, happiness and reward to their families. Their parents often speak of being inspired by them.

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.

Discussion

There is an emerging body of literature which is questioning the concept of denial as maladaptive, and is providing some alternative interpretations. Russell (1993) challenges the traditional view, and suggests that" ...denial buffers the individual against what is sometimes a bleak reality". He cautions health professionals against asking their clients to be "unrealistically realistic", distinguishes between acceptance and adaptation, and states that successful adaptation is not dependent upon acceptance.

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.

Implications for Nursing Practice

The six parents in my study painted a picture of their experience of living with a child with significant disability which is at odds with the orthodox viewpoint. We may interpret their joy, hope and optimism with the traditional lens of unresolved grief, mourning, chronic sorrow and psychoanalytic theory, with their implications for non-acceptance, psychopathology, maladaption, denial and dysfunction. Or, we can allow alternative interpretations, as expressed by these six parents and in some emerging literature, to provide explanatory power. I do not wish to denigrate the contribution and usefulness of the traditional paradigms, but rather make a plea for a broader view, a view which incorporates the experience of parents, one which is complex, dynamic and highly individual.

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.

More Pictures of the Children

Annie is now a delightful, outgoing seven year old who loves talking with people and going to school. She is dark and tiny, has amber coloured eyes and looks a little unusual - I call her the "pixie child". She does not do the things one expects of a seven year old - in fact, she functions as most three year olds do. She is described by many who know her as "a winner", and is a source of ongoing delight to her mother. No one knows where her father is.

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.

Conclusion

By presenting a map of my own journey as a nurse practitioner who questioned the theoretical underpinnings from which I provided nursing care, I have illustrated how theory and practice are intertwined and how, when theory and practice develop gaps, we are in a position to explore issues which evolve as a result of our practice. By allowing our practice to be influenced by both theory and experience as ongoing and concurrent processes, we can conduct research which may challenge prevalent assumptions and enable us to be more effective nurse practitioners.

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(C) 1996, Penelope Kearney. All rights reserved.

Email: p.kearney@uws.edu.au
Tel:(047)36.0822 (+61 47 360822)
Fax:(047)36.0658 (+61 47 360658)

Postal Address:
Penny Kearney
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.
Australia.