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Stories from the margin: Mothering a child with ADHD or ASD

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By Lorelei Carpenter, Elke Emerald

Published: 2009
ISBN: 978-1-921214-43-1
Pages: 206
Imprint: Post Pressed

Overview

Carpenter and Emerald have enabled readers a rare glimpse into experiences that are erased or perhaps never represented as they cause discomfort for those who can more easily live within the boundaries of the normal. When these mothers' stories become visible, they interrupt the smooth plotlines of the dominant stories of good mothering and cause unease.

As they explore the contexts in which mothers of children with ADHD and ASD try to compose their lives, they highlight both the contradictory and complex intersection of diagnoses and treatment with ontological questions around disability and difference.... As Carpenter and Emerald point out 'the problem is when different is taken to be deficit, especially when the deficit is located in the individual'.

Jean Clandinin
Professor and Director of the Centre for Research Teacher Education and Development at the University of Alberta

This book is an essential resource for professionals working with mothers who have children with ADD or ASD The narrative of these mothers is powerful and provides insight into the challenges of mothering children who are 'different'. These women's stories tell of isolation, marginalisation and attempts to silence their reality; they speak of resilience, self-sufficiency and courage.

Dr Dianne Rogers
Author: Mothering and Attention Deficit Disorder: The Impact of Professional Power
(VDM Verlag Dr Muller)

Dr Lorelei Carpenter has worked in the area of Special Education and Personal Counselling for more than twenty years. She currently teaches at Griffith University Gold Coast campus, Australia, in the area of Educational Counselling and Special Needs Education. Lorelei began researching the effect of ADHD on mothers in the mid 1990s as part of her doctorate studies. She is particularly interested in how society defines and treats people of difference.

Dr Elke Emerald teaches in communication and research at Griffith University, Gold Coast Campus, Australia. Her research examines the achievement of different social categories in routine interactions. Her previous co-authored book Schooling the Child, examines the categories 'student' and 'child' in the context of the school classroom. Her current work examines the politics of motherwork and the enactment of motherhood in different social sites. Elke Emerald formerly published as Helena Austin.

Table of Contents

Foreword
References

Chapter One - Setting the Scene

  • This study: Why interviews, why narrative and cautions
  • Story, narrative, cultural narrative, counter narrative
  • Counter narratives
  • Thematic analysis
  • Overview of the book

Chapter Two - Mothering and Motherhood in the Twenty-first Century

  • The twentieth century mother
  • From mothers to motherhood
  • Discourses of motherhood
  • The complex construct of mother
  • Conclusion

Chapter Three - HD and ASD

  • ADHD -What is it?
  • What's in a name?
  • Diagnosing ADHD: misdiagnosis, over-diagnosis, under-diagnosis
  • Prevalence
  • What causes ADHD?
  • Treatment - are drugs the answer or an easy way out?
  • Multimodal Treatment
  • Autistic Spectrum Disorder (ASD)
  • Autistic Spectrum
  • Asperger Syndrome
  • What causes ASD
  • Prevalence
  • Diagnosis
  • ASD and Parenting
  • Conclusion

Chapter Four - Difference and Disability

  • What is disability
  • Mistreatment of 'disability', mistreatment of 'difference'
  • What's in a word? - The language of disability
  • Models of disability
  • Disability in legislation
  • The power of the Diagnostic and Statistic Manual (DSM)
  • So what are the implications for mothers?
  • Conclusion

Chapter Five - Good Mother/Bad mother: Failed mother or not so bad after all

  • Good mother/bad mother
  • Motherhood as vocation
  • Guilt
  • Loss of mother role
  • Counter-narrative mother
  • Advocate
  • Strong
  • Not a bad mother
  • Conclusion

Chapter Six - The Experience of Motherhood

  • Silenced, Silence, Silent
  • Having a voice, being heard
  • Troubling and troubled
  • Isolated
  • Conclusion

Chapter Seven - Coming in from the Margins

  • Oppression that disables mothers
  • Exploitation
  • Marginalisation
  • Powerlessness
  • Cultural Imperialism
  • Violence
  • Oppression in the margins
  • Looking back
  • What next?

References
Index

Reviews

Health Sociology Review journal (2009)

Carpenter L & emerald e (2009) Stories from the margin: Mothering a child with ADHD or ASD. Teneriffe QLD: Post Pressed.

by Julie Smith (ANU)

The essence of the issue raised by this thought provoking little book is captured in the following comment from a mother experiencing the challenge of mothering a child with Attention Deficit-Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD): ‘they say that it takes a village to raise a child - so where the hell is everyone when we need them!'

If the comment epitomizes a feminist critique of Western motherhood, how much more so for the mother of a child with ADHD or ASD. As this book amply illustrates, she experiences motherhood and all its contradictions ‘on the margin' of the dominant cultural narrative. Being different, her child cannot, by definition, be ‘good', and so she, by definition, may not be ‘a good mother'.

As the first chapter explains, this book is built around the stories of mothers of a child with ADHD/ASD. The stories are placed within the context of cultural narratives about motherhood - the good mother/bad mother dichotomy. The book further sets the scene for women's present-day Australian experience through a chapter on ‘Mothering and motherhood in the twenty-first century'. Here we are reminded of the way that mothering was made ‘scientific' in an attempt to reduce the horrendous casualty rate from industrialization and unsanitary living conditions and medical practices. Motherhood became the testing ground for religious claims that God's moral laws were based on science (Mein Smith 1988). In the process, scientific motherhood disempowered mothers as experts in raising children, placing them under the control of ‘authorities' - medical, welfare, religious, or educational - whose learned opinions derived from applying Taylorism to child raising (Reiger 1985).

Themother of a child with ADHD or ASD is marginalised because the very existence of developmental disorder is, in some sense, contested. This leaves the mother subject both to the oppressive authority of medical opinion (the need for a diagnosis takes her within their purview) as well as to the harsh authority exercised less formally by teachers, relatives, and other parents: self appointed judges of ‘bad mothers'. They apply the good mother/bad mother test to arrive at the merciless conclusion that the wayward child just needs some proper discipline, denying that the child has certain personal features that make social functioning and acceptance difficult.

Chapters 3 and 4 review the diagnostic criteria for ADHD and ASD then analyse what they mean for mothers when ‘difference' is viewed as ‘disability'. Discussion of ‘labeling' highlights the dilemma facing parents who seek assistance for their child yet must assess whether acquiring the ‘disability' label will be enabling or imprisoning.
Here I was reminded of an article now widely viewed on the internet called The Etiology and Treatment of Childhood [Smoller 1984] - a relevant and witty caricature of how easily common but inconvenient behaviors may be medicalised. It identifies with medical precision and pretence the clinical features of the condition of ‘childhood' for a proposed DSM-IV: ‘congenital onset', ‘dwarfism', ‘emotional lability', ‘knowledge deficits', and ‘legume anorexia'. The ‘sociological model' for defining this condition identifies children as an ‘outgroup'. Treatment involves interventions aimed at ‘effective assimilation into mainstream society', though it is noted that there is an astonishingly high ‘spontaneous remission rate' evident in follow-up RCTs.

Herein lies the big issue raised by this book on women's experience of mothering such a ‘different' child. A diagnosis of ADHD/ASD may provide a ticket for the mother to engage some ‘expert' help. However, she risks capturing both the child and herself in a bewildering and disempowering medical and pharmaceutical maelstrom. Absence of a diagnosis also risks leaving the mother sitting with her ‘ill disciplined child' in the ‘bad mother' corner of society, blamed, shunned and denied the approval that comes from being ‘a good mother' of a child who has been successfully ‘assimilated'.

Chapters 5 and 6 are where the mothers speak on the identified themes of ‘good mother/bad mother' and ‘how was it for you?' The authors explicitly relate their approach to the path breaking feminist tradition established by Adrienne Rich whose book (Rich 1977) so powerfully reclaimed the experience of reproduction and motherhood for women. This is where we meet the ‘troubled and troubling' mothers who have that puzzling ‘propensity for self sacrifice', but for whom the experience of motherhood is that of a lone tiger, fighting a determined and, if needed, ferocious advocacy campaign on their child's behalf. Such mothers find it necessary to become a troublesome contradiction of the passive and compliant ‘good mother' stereotype. These chapters document the experience of negotiating this pathway, in the process identifying a counter-narrative of being a ‘not bad mother', ‘mentally strong', proactive, as well as having the ability, ‘in common with God', to ‘love the unloveable'. In these chapters, the question about whether our society has limited the range of what is normal to impossibly narrow proportions is illustrated by the day to day experiences of mothers trying to make their different child ‘fit in'.

Chapter 7 contemplates the dilemmas and challenges for such mothers living in a ‘village' that wants children on the cheap, a society which particularly exploits mothers' unpaid, unrewarded and notably intensive care work. It is a village where motherhood is notionally on a pedestal but where in practice, respect, understanding, and resources are only available to mothers raising the conforming ‘good' child. I was reminded here of Nancy Folbre's Magic Pudding of Mother Love (Folbre 2002) - the mythical, never emptying magic pudding that has sustained Australian children for decades, but which risks being depleted, especially when drained by the intensity of mothering a ‘disabled' child. The depressing thought is that a society that will not properly resource the raising of these intensely ‘different' children is a society destined to die, because ultimately, such diversity generates the multiplicity of thought and experience from which creativity and humanity arises. The authors argue that ‘expert others' (including, sadly, health professionals and teachers) disempower, isolate and silence the mother who is commonly misjudged to be less knowledgable about their own child than strangers.

I found this a worthwhile read - thought provoking, interesting, relevant. On the test of whether I would recommend this book to a mother of a child with ASD or ADHD, the answer is a probable yes. The ethical issue raised by the authors at the outset is relevant: would doing so encourage self-reflective practice by the mothers concerned, and so lead to bad consequences? The risk is of exposing them to greater depression, hurt and despair as they reflect on their daily struggles, rather than inspiring and encouraging them with empathetic understanding and support. The densely methodological first chapter could also be off-putting to those readers, and the brief history of scientific mothering does not quite capture the important critiques of Truby King mythologies by Australian social historians Philipa Mein-Smith and Kerreen Reiger.

All in all, though, this book is unique in that it is the first to examine within a feminist scholarly tradition the question of ‘how is it for the mother' of a child with ADHD/ASD. It is a worthy contribution to the field, and provides a valuable and novel perspective on this disturbing and perplexing issue.

References
Folbre, N. (2002) 'The Revolt of the Magic Pudding; How to reshape a labour market that simply doesn't care', Australian Financial Review, 5 April, pp. 4-5.
Mein Smith, P. (1988) 'Truby King in Australia: A revisionist view of reduced infant mortality', New Zealand Journal of History, April, pp. 23-43.
Reiger, K.M. (1985) The disenchantment of the home : modernizing Australian domestic life, Oxford University Press, Melbourne, edition.
Rich, A.C. (1977) Of woman born: Motherhood as experience and institution, Bantam Books.

---------------------------------------

Contemporary Nurse journal (2009)

Carpenter L & emerald e (2009) Stories from the margin: Mothering a child with ADHD or ASD. Teneriffe QLD: Post Pressed.

by Sandra Sytsma

Lorelei Carpenter and elke emerald practise a research ethic centred on making a difference in people's lives. In their new book, Stories from the margin, these authors relate a research journey with mothers of children with ADHD or ASD. In addressing how the politics of difference (Young 1990) are lived out in the experience of women mothering children socially and medically labelled as 'disabled' and 'different', Carpenter and emerald's sensitive yet candid work supports the empowerment of these mothers in enabling them to resist the oppression of marginalisation and to insist on being included in cultural narratives of good mothering.

The main title reflects the social relegation of mothers of children with ADHD or ASD to the edges of constructed texts of 'good mothering' because their children are not often 'good children'. Put bluntly, the normal implication, and excuse for exclusion, is that bad children are the result of bad mothering. Carpenter and emerald invited a group of mothers who inhabit the margins of socially acceptable mothering narratives to tell their stories of what living on the sidelines is like for them. Narrative and thematic analyses of these mothers' experiences revealed a range of themes that were used to structure the latter part of the book.

The early chapters set the scene by reviewing the dominant past and present narratives of mothering, and how good mothering is framed in fields such as medicine, psychology and education. An exploration of the nature and contradictions in diagnosis and treatment of ADHD and ASD is followed by an unpacking of the concepts of disability and difference. Important questions are raised about the impact of positioning disability within the child, and by association, in the mother, or within a society unwilling to meet the needs of those perceived as different.

Under the topic of good mother/bad mother, Carpenter and emerald then introduce the first group of identified themes: motherhood as a vocation, guilt, loss of mother role, counter-narrative mother, advocate, strong, not a bad mother. Although the authors interpret the stories they heard in terms of the topic, the participant mothers' authentic voices feature prominently and demonstrate how they struggle under, with, and against their oppressive marginalisation from the texts of good mothering.

A further topic of mothers' experiences brings together themes that speak of how mothering children with ADHD or ASD affects these women personally. Stories tell of mothers being silenced by not being given a voice and by not being heard when they speak. They tell also of being silent, of being unable to speak of their experience and needs. Then there is silence, the absence of any positive feedback on their mothering. Opportunities of having a voice and being heard, and being actually listened to and witnessed, were rare but much welcomed. Such occasions, as with the interviews in this study, were emotional and painful but ultimately cathartic and healing. Further themes identified trouble in various forms: mothers troubling the boundaries of cultural and professional narratives with their alternative ways of being good mothers, and mothers themselves being troubled by the labels put on them and the isolation they endured.

The bleakness of the mothers' stories is rescued with the authors' understanding, acceptance and hope as they explore two ideas for 'coming in from the margins'. First, in response to the women's stories identifying ADHD and ASD as disabling conditions for both the child and the mother, Carpenter and emerald reflect on the mothers' lived experiences in terms of Young's (1990) constructs of oppression, namely exploitation, marginalisation, powerlessness, cultural imperialism and violence. Second, they speak for and with these mothers as they now 'work to claim their own space in the text of good mothering and to legitimise the margins'. The courageous telling of their stories is only the beginning.

Stories from the margin is 'good medicine' for all mothers, fathers and families, as well as institutions, professionals and policy makers. Through the voices of the authors and the mothers of children with ADHD or ASD, it shows us that we can do much better in interpreting what inclusion means in a just society that respects and celebrates difference. For me, the book has been a sobering sojourn in the lifeworld of otherness; a time which evoked empathy not only with the mothers in the study but with the mother in my family who has two children with ADHD and who bravely read this work with me. Together, we appreciate the 'good doctors' who wrote it.

This research made a difference in the lives of the mothers who shared their stories from the margins in fostering a transformation from being disabled by their children's difference to being enabled by that same difference. It also made a difference for the mother who participated with me in reading and responding to this book. Her mothering was validated by these other mothers whose stories demonstrate that they 'walk in her shoes'. It has made a difference, too, in my life as a mother, educator and person implicitly labelled as disabled. Stories from the margin, although specifically focused on the mothering of children with ADHD or ASD, has potentially a wide audience because it exemplifies and explores the contested nature of difference and our individual and social responses to it. For readers receiving these stories and interpretations that 'tell it like it is', their personal challenge will be to make a difference in how they address and relate to 'other'.

Reference

Young IM (1990) Justice and the politics of difference. Princeton NJ: Princeton University Press.

Foreword

This beautiful book touched me in profound ways as I read the pages and was called to enter into the storied lives of women who were mothering a child with ADHD or ASD. I found their stories necessarily troubling as they called to mind the experiences of those 'others' whose lives are silenced by 'dominant educational, psychological and medical discourses of the mother'. As Carpenter and emerald write, these mothers are exiled by and from the narratives of good mother. They dwell in the margins. These are spaces of silence and isolation.
And, as I read, I began to awaken to an understanding that these mothers' experiences are not only silenced by dominant discourses but are also silent as rarely is there a space for them to tell of their lives as mothers when they stray outside the boundaries of what counts as normal.
Carpenter and emerald have enabled readers a rare glimpse into experiences that are erased or perhaps never represented as they cause discomfort for those who can more easily live within the boundaries of the normal. When these mothers' stories become visible, they interrupt the smooth plotlines of the dominant stories of good mothering and cause unease. The stories evoked strong emotions for me as a reader. They caused me to stop and think and question those smoothed-over stories.
As they explore the contexts in which mothers of children with ADHD and ASD try to compose their lives, they highlight both the contradictory and complex intersection of diagnoses and treatment with ontological questions around disability and difference. I was caught by sentences such as the following one.
Most mothers experience the silence, marginalization and isolation that represent the treatment that continues to be meted out in today's society to those individuals whose difference is considered to be a threat to the stability of the societal harmony.

In subsequent chapters as I read the mothers' words, this sentence haunted my reading and called me to feel the complex terrain in which these women were negotiating their stories to live by (Clandinin & Connelly 2000). As Carpenter and emerald point out 'the problem is when different is taken to be deficit, especially when the deficit is located in the individual'. The moral reading of the dominant narrative becomes apparent as they outline themes within the topic of Good Mother/Bad Mother. As Carpenter and emerald weave the mothers' words and stories into themes within this topic, I came to see how prevalent the dominant cultural narrative was and how, in almost every life moment, the women in this study, bumped against some aspect of the plotline.

By representing these mothers' lives in this text, Carpenter and emerald are also creating a space to begin to compose what Lindemann Nelson (1995) calls a counter story, a story constructed against the grain of the taken-for-granted institutional narrative. Counter stories are narratives designed to subvert, to shift, and to change. Lindemann Nelson (1995) defined a counter story as 'a story that contributes to the moral self-definition of its teller by undermining a dominant story, undoing it and retelling it in such a way as to invite new interpretations and conclusions' (p.23). Counter stories are, in some ways, imagined change narratives. They are narratives composed to shift the taken-for-granted dominant narratives. In the creation of this book, in allowing these mothers to tell their stories and then by thoughtfully interpreting these stories against the backdrop of the dominant discourses, Carpenter and emerald are, themselves, beginning to create the possibility of a counter story that will undermine the dominant story, undo it and retell it in new ways. The possible counter story is one that attempts to undo the dominant discourse of good mothering and to retell it around a more inclusive discourse, a discourse in which the mothers of children with ADHD and ASD can locate themselves, can recognize themselves.

Elizabeth Soep (2006), building on Maxine Greene's (1995) thoughts on artistry in the margins, directs our attention in ways that might be helpful to thinking about this nascent counter story. The main or dominant text of mothering begins in the stories of mothers who fit within the ideals of good mothers. Carpenter and emerald title, Motherhood in the Margins, suggests this metaphor of text and margins. They write, 'the mothers we spoke with do not get to read themselves in the narrative text of good motherhood, they dwell in the marginal spaces'. Soep (2006) asks us to consider the notes we write in the margins of main texts, those scribbled marginalia where we record our thoughts triggered by the main text. Thinking metaphorically, can we use Soep's work as a kind of metaphor for thinking about the possible counter story, a metaphor to move us to a more inclusive discourse of mothering?

Currently the main plotline of mothering is a silencing one for mothers with children with ADHD or ASD. It is a plotline that keeps the stories of mothers of children with ADHD and ASD silent and silenced on their stories of experience. Carpenter and Emerald can be seen as telling the stories of these mothers in the margins of the main text and, in so doing, are beginning to interrupt the main text of good mothering.

While Soep (2006) is attending to sites on the margins of schooling, radio shows and groups dedicated to supporting children's artistry, these sites on the margins are central to these children's lives. The children and youth choose or co-compose these sites and their stories told in these sites are significant life compositions for them. Lives are the starting point.

In a similar way, Carpenter and emerald also make lives the starting point. All mothers' lives, not just the ones that fit within the dominant plotline, are now visible in the mothering discourse. Perhaps by representing them in this book, the lives storied in these pages can begin to trouble, interrupt, the dominant cultural narrative. What is written in the margins can become part of the main text as people read and consider this book. Others may join in shaping this emerging counter story, one in which all mothers' lives are the starting point for the cultural narrative of good mothering.

Carpenter and emerald state clearly that the 'social action of awareness-raising is a deliberate goal of this book.' These stories as marginal notes to main text offer a possible space in which awareness can be created as a first step in another story of mothering. Stories do have 'the power to shape the awareness and behaviour of individuals as well as that of organizations and society.' And so the counter story begins to undermine the dominant story, undoing it and retelling it as these stories from the margins interrupt the dominant narrative in yet unimagined ways.

Professor D Jean Clandinin
Centre for Research for Teacher Education and Development
University of Alberta
January 2009

References

Clandinin DJ and Connelly FM (2000) Narrative inquiry: Stories of experience in qualitative research. San Francisco: Jossey Bass.

Greene M (1995) Releasing the imagination: Essays on education, the arts, and social change. San Francisco: Jossey Bass.

Lindemann Nelson H (1995) Resistance and insubordination, Hypatia 10(2): 23-43.

Soep E (2006) 'Radio-active learning: Youth mediations on the Eisner Effect'. Presented at the Symposium on Swimming Upstream: Challenging the Premises and Practices Driving American Education, at Stanford University, CA, 07 October 2006.


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