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Intertwining to fit in : a grounded theory study of caregivers with school-aged children with FASD Swart, Suretha 2012

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INTERTWINING TO FIT IN: A GROUNDED THEORY STUDY OF CAREGIVERS WITH SCHOOL-AGED CHILDREN WITH FASD by Suretha Swart B.A., Universiteit van Pretoria, 1992 B.A. (HONOURS), Potchefstroomse Universiteit vir C.H.O., 1993 M.A., Randse Afrikaanse Universiteit, 1996  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (School Psychology)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) July, 2012 © Suretha Swart, 2012  ii  Abstract My study aimed to explain how caregivers of school-aged children with FASD manage their children’s schooling. Symbolic interactionism served as the guiding theoretical perspective. I used a Glaserian approach to grounded theory to develop a substantive theory: intertwining to fit in. I collected data through interviews, participant observation, and document analysis. I completed 30 in-depth interviews and 25 hours of participant observation with children’s caregivers between February 2009 and November 2009. I used constant comparative analysis to construct my substantive theory. Intertwining to fit in is a dynamic cycle caregivers of elementary school-aged children with FASD use to resolve their main concerns, which are preventing their children from failing academically and in social interactions and preventing themselves from being regarded as “bad” parents. To intertwine to fit in parents used two strategies, orchestrating schooling and keeping up appearances, while they were regulating the relationships with their children. Caregivers used the strategies to try to achieve academic and social success for their children and to be regarded as “good” parents. Using the strategies successfully reduced the amount of time parents spent regulating their relationships with their children and permitted children more independence. Conditions caregivers encountered, for example key workers, influenced how caregivers used the strategies and related tactics. Using the strategies resulted in caregivers encountering two critical junctures: hitting rock bottom and reaching islands of calm. When hitting rock bottom neither of the strategies were working, children were not succeeding, and caregivers were focused on regulating relationships with their children. Reaching islands of calm occurred when strategies were successful and parents could invest  iii  more time in themselves. During critical junctures, caregivers re-engaged with the school system. Short-term outcomes associated with critical junctures affected the long-term outcomes caregivers were trying to achieve. “Intertwining to fit in,” contributes to literature on attachment and parenting and extends explanations about caregivers’ advocacy for their children. The substantive theory has implications for school psychology practice, training, and research, as well as school personnel. The theory is also important in illuminating approaches to managing for the caregivers of school-aged children with FASD.  iv  Preface This thesis is submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Faculty of Graduate Studies, School Psychology. I was solely responsible for all aspects of the research project, including recruitment of participants, data collection, coding, analysis, and writing the theory. I worked under advisement of my research committee. Ethics approval for this research was issued by the Behavioural Research Ethics Board at the University of British Columbia (certificate number: H0802873).  v  Table of Contents Abstract .................................................................................................................................................. ii Preface ................................................................................................................................................... iv Table of Contents ................................................................................................................................... v List of Tables ......................................................................................................................................... ix List of Figures ........................................................................................................................................ x List of Abbreviations and Conventions ................................................................................................. xi Acknowledgements ............................................................................................................................. xiii Dedication ........................................................................................................................................... xiv Chapter 1: Introduction.......................................................................................................................... 1 1.1  Background ............................................................................................................................. 1  1.2  Significance ............................................................................................................................ 4  1.3  Purpose and Aims ................................................................................................................... 6  1.4  Theoretical Basis of the Study ................................................................................................ 6  1.5  Background of the Investigator............................................................................................... 7  1.6  Organization of the Thesis ...................................................................................................... 8  Chapter 2: Review of the Literature .................................................................................................... 10 2.1  Introduction........................................................................................................................... 10  2.2  Primary and Secondary Disabilities ...................................................................................... 13  2.3  Challenges Related to the Prevention of Secondary Disabilities .......................................... 15  2.3.1  Challenges Related to the Process of Diagnosis ............................................................. 16  2.3.2  Challenges Related to the Delivery of School-Based Supports ...................................... 18  2.3.3  Challenges Related to the Caregiving Environment ....................................................... 19  2.4  Addressing Challenges Related to the Prevention of Secondary Disabilities in British Columbia ................................................................................................................... 23  2.5  Caregiver Experience in Interactions with the School System ............................................. 28  2.6  Summary ............................................................................................................................... 34  Chapter 3: Theoretical Perspective ...................................................................................................... 37 3.1  Introduction........................................................................................................................... 37  3.2  Symbolic Interactionism ....................................................................................................... 38  3.2.1  Concepts ......................................................................................................................... 39  3.2.1.1 3.2.1.2 3.2.1.3 3.2.1.4  The Self .................................................................................................................. 39 Objects ................................................................................................................... 41 Symbols ................................................................................................................. 42 The Act .................................................................................................................. 42  vi  3.2.1.5 3.2.1.6  Social Interaction ................................................................................................... 43 Societies ................................................................................................................. 44  3.2.2  Strengths of Symbolic Interactionism............................................................................. 45  3.2.3  Limitations of Symbolic Interactionism ......................................................................... 46  3.2.4  Ontological and Epistemological Underpinnings of Symbolic Interactionism .............. 48  3.2.5  Summary of Methodological Implications of Symbolic Interactionism......................... 49  3.3  Further Methodological Implications of the Theoretical Perspective: Research Questions, Strategy of Inquiry, and Rigour .......................................................................... 51  3.3.1  Framing the Research Question ...................................................................................... 52  3.3.2 3.3.3  The Strategy of Inquiry: Grounded Theory .................................................................... 53 Leveraging Symbolic Interactionism with Grounded Theory ........................................ 56  3.3.4  Rigour ............................................................................................................................. 58  3.4  Summary ............................................................................................................................... 61  Chapter 4: Method ............................................................................................................................... 62 4.1  Introduction........................................................................................................................... 62  4.2  The Study Design.................................................................................................................. 62  4.3  Definition of Terms .............................................................................................................. 63  4.4  Research Questions ............................................................................................................... 64  4.5  Ethical Considerations .......................................................................................................... 64  4.5.1  Informed Consent ........................................................................................................... 65  4.5.2  Addressing the Power Imbalance ................................................................................... 67  4.5.3  The Prevention of Dual Relationships ............................................................................ 69  4.5.4  Remuneration of Research Participants .......................................................................... 70  4.6  Data Collection Procedures................................................................................................... 70  4.6.1  Sampling Techniques...................................................................................................... 70  4.6.2 Data Collection Strategies .............................................................................................. 72 4.6.2.1 Interviews............................................................................................................... 72 4.6.2.2 Participant Observation .......................................................................................... 75 4.6.2.3 Document Analysis ................................................................................................ 80 4.7  Theoretical Sampling ............................................................................................................ 80  4.8  Data Analysis and Theoretical Memos ................................................................................. 84  4.8.1  Constant Comparison Method of Analysis ..................................................................... 86  4.8.2  Coding ............................................................................................................................ 87  4.8.2.1 4.8.2.2 4.8.2.3 4.9  Open Coding .......................................................................................................... 87 Selective Coding .................................................................................................... 90 Theoretical Coding................................................................................................. 93  Rigour ................................................................................................................................... 95  4.9.1  Auditability ..................................................................................................................... 95  vii  4.9.2  Theoretical Sensitivity .................................................................................................... 96  4.9.3 4.9.4  Grounded Theory Criteria for Rigour ............................................................................. 97 Additional Criteria for Rigour: Reflexivity and Relationality ........................................ 99  4.10  Summary ............................................................................................................................. 102  Chapter 5: Intertwining to Fit In ........................................................................................................ 103 5.1  Introduction......................................................................................................................... 103  5.2  Sample Characteristics ........................................................................................................ 104  5.3  The Core Category: Intertwining to Fit In .......................................................................... 105  5.4  The Main Concerns ............................................................................................................. 119  5.5  Long-Term Outcomes ......................................................................................................... 120  5.6  Orchestrating Schooling ..................................................................................................... 125  5.6.1  Being on Stand-By........................................................................................................ 129  5.6.2  Pitbulling ...................................................................................................................... 138  5.6.3  Cultivating Connections ............................................................................................... 147  5.6.4  Anticipating Difficulties ............................................................................................... 153  5.7  Keeping Up Appearances ................................................................................................... 157  5.7.1  Sharing Information ...................................................................................................... 161  5.7.2  Reframing ..................................................................................................................... 166  5.7.3  Redefining Self ............................................................................................................. 170  5.8  The Critical Junctures: Hitting Rock Bottom and Reaching Islands of Calm .................... 175  5.8.1  Hitting Rock Bottom..................................................................................................... 177  5.8.2  Reaching Islands of Calm ............................................................................................. 185  5.9  Re-engaging ........................................................................................................................ 196  5.9.1 5.9.2 5.10  Advocating and Educating............................................................................................ 197 Changing Settings ......................................................................................................... 203  Summary ............................................................................................................................. 209  Chapter 6: Discussion ........................................................................................................................ 212 6.1  Introduction......................................................................................................................... 212  6.2  Comparing and Contrasting the Model with the Extant Literature ..................................... 213  6.2.1  Intertwining to Fit In ..................................................................................................... 214  6.2.2  Orchestrating Schooling ............................................................................................... 231  6.2.3  Keeping Up Appearances ............................................................................................. 238  6.2.4  Conditions of Support ................................................................................................... 245  6.3  Limitations .......................................................................................................................... 248  6.3.1  Limitations with Regard to the Developmental Nature of Grounded Theorist’s Skill............................................................................................................................... 248  6.3.2  Limitations with Regard to the Study Sample .............................................................. 250  viii  6.3.3 6.4  Limitations with Regard to Participant Observation .................................................... 252  Implications for the Field of School Psychology ................................................................ 253  6.4.1  Implications for School Psychology Practice ............................................................... 253  6.4.2  Implications for School Psychology Training .............................................................. 259  6.4.3  Implications for Research ............................................................................................. 260  6.5  Implications for Teachers/Principals/District Administrators ............................................ 262  6.6  Implications for Key Workers ............................................................................................ 264  6.7  Significance of the Findings for Caregivers ....................................................................... 266  6.8  Summary ............................................................................................................................. 268  References .......................................................................................................................................... 272 Appendices ......................................................................................................................................... 303 Appendix A : Advertisement.......................................................................................................... 303 Appendix B : Information Letter.................................................................................................... 304 Appendix C : Consent Forms ......................................................................................................... 306 Appendix D : Intake Form ............................................................................................................. 310 Appendix E : Initial Interview Guide ............................................................................................. 312 Appendix F : Observation Guide ................................................................................................... 314 Appendix G : Confidentiality Statement ........................................................................................ 315 Appendix H : Example of Visual Representations......................................................................... 316 Appendix I : Example of Fieldnotes .............................................................................................. 317 Appendix J : Example of Initial Memo .......................................................................................... 319 Appendix K : Memo Detailing Development of the Core Category .............................................. 321 Appendix L : Developing Theory (Early Stage of Integration) ..................................................... 323 Appendix M : Demographic Information....................................................................................... 324 Appendix N : Memos (Later Stage of Integration) ........................................................................ 326 Appendix O : Caregiver and Child Characteristics ........................................................................ 331  ix  List of Tables Table O-1:  Caregiver and Child Characteristics ......................................................... 331  x  List of Figures Figure 5.1: Intertwining to Fit In .......................................................................................... 107 Figure 5.2: Orchestrating Schooling. .................................................................................... 127 Figure 5.3: Keeping up Appearances .................................................................................... 159  xi  List of Abbreviations and Conventions The first six abbreviations and conventions below pertain to quotations from interviews with participants. I then provide abbreviations of terms used throughout the thesis. To make quotations more succinct or protect the identity of children, participants or third parties, I left out some words at times or used a personal pronoun instead of a first name. Some quotations were shortened for the sake of brevity. An example is provided of abbreviations used to identify interviews and documents in quotations. …  A word or a few words omitted  ….  A sentence or a few sentences omitted  [ ]  Insertion of a word to aid understanding of the dialogue  1.1, lines 7-12  Participant one, interview one, lines 7- 12  P  Participant  R  Researcher  ARND  Alcohol-Related Neurodevelopmental Disorder  ADHD  Attention Deficit Hyperactivity Disorder  BCAAN  British Columbia Autism Assessment Network  BREB  Behavioural Research Ethics Board  CBC  Conjoint Behavioural Consultation  CDBC  Complex Developmental Behavioural Conditions  FAE  Fetal Alcohol Effects  FAS  Fetal Alcohol Syndrome  FASD  Fetal Alcohol Spectrum Disorder  FHAN  Fraser Health Assessment Network  IDEA  Individuals with Disabilities Education Act  xii  IEP  Individual Education Plan  IOM  Institute of Medicine  LEIC  Learner Environment Instruction Curriculum  MLA  Member elected to the British Columbia Legislative Assembly  PHSA  Provincial Health Services Authority  POPFASD  Provincial Outreach Program for Fetal Alcohol Spectrum Disorder  SEA  Special Education Assistant  xiii  Acknowledgements I wish to express my sincere gratitude to my co-supervisors, Dr. Wendy Hall and Dr. William McKee for their direction and encouragement. Wendy, you shared your expertise with kindness, patience, and the highest attention to detail and scholarliness. Thank you for reading draft after draft and for introducing me to the joy of doing grounded theory research. Bill, I want to sincerely thank you for your mentorship throughout all stages of my program, for always having an open door, and for setting the stage for success for myself and many school psychologists in British Columbia. I want to express my appreciation to Dr. Laurie Ford for encouraging me to apply to the program, for offering me a place in your lab where I could “fit in” as a graduate student, and for serving on my committee. I value your contributions to my development as a school psychologist. I am also grateful to Dr. Sterett Mercer and Dr. Cindy Hardy for reading my work and for your helpful suggestions. To Dr. Barbara Holmes, you are a constant source of inspiration. Thank you for the many ways you supported me throughout the program, including the research process, and for your friendship. I would like to thank Dr. Ted Wormeli for being a terrific internship supervisor. Erika and Rashmeen, thank you for camaraderie and inspiration. I would like to acknowledge financial support received from UBC, in the form of the Pacific Century Graduate Scholarship and the Dr. Chi-Kit Wat Scholarship. I want to express my sincere gratitude to the caregivers who shared their stories and the key workers who assisted with recruitment. John Getoweic offered helpful suggestions early onthank you. Thank you to Elizabeth and Marni for your superb help with transcription and to Glen and Dan for helping to make the final product look more professional. I would like to thank the Martin, Burke, Naude, Heyns, Van Schouwenburg, Van Dyk, du Plessis, Swart, Steenkamp, and Wiesner families in South Africa. You are very important to me. My mother-in-law, Charlotte Swart, deserves special recognition for the many ways she enriches our lives. To Veronica Advincula, Marla Levy, Heleen Hofmeyr, Deidre and Trevor Wilson, Virginia Kwong, and Kristina and Peter Tattersall for your friendship and invaluable support-my heartfelt thanks. To my neighbour, Marilyn Webber, thank you for your sincere interest in my progress. I value our daily conversations. For meaningful connections over time-thank you Cicelia Potgieter, Marina Scheepers, Jaco Scholtz, and Dorette Coetsee. To my wonderful children, Marna and Pieter (in alphabetical order!), who waited both patiently and impatiently for that chocolate lava cake, thank you for bringing so much joy to my life. Finally, my biggest thanks go to my dear husband, Pieter Swart. You supported me through countless cappuccinos, many sacrifices, and an unfailing belief that I will reach my ideal long-term outcomes.  xiv  Dedication  With love and appreciation, to Annemie Marna (Heyns) Martin (1 April, 1944-26 March, 1994) Cornelius Frederick Martin (18 November, 1945-26 March, 1992) my parents, who left too early, but are with me, always  1  Chapter 1: Introduction 1.1  Background Fetal alcohol spectrum disorder (FASD) is considered to be the most common form  of preventable birth disorder in the western world (Rasmussen, Andrew, Zwaigenbaum, & Tough, 2008). Currently, practitioners and researchers in North America use the term FASD to describe a range of physical, mental, behavioural, and/or learning disabilities that may result from prenatal exposure to alcohol (Bertrand et al., 2004). Based on the harmonization of the Institute of Medicine (IOM) criteria (Stratton, Howe, & Battaglia, 1996) and 4-Digit Diagnostic Code approaches to assess alcohol exposure, through facial anomalies, growth impairment, and brain damage (Astley & Clarren, 2000), experts in Canada developed the Canadian guidelines for diagnosis of FASD (Chudley et al., 2005). According to these guidelines, the umbrella term FASD includes the medical diagnoses of Fetal Alcohol Syndrome (FAS), Partial FAS, and Alcohol-Related Neurodevelopmental Disorder (ARND). While the complex and interrelated features of FASD originate with organic brain damage, individuals affected by FASD vary significantly in the manner in which organic brain damage from alcohol interacts with genetic influences and environmental variables (Chudley et al., 2005). Some individuals who are prenatally exposed to alcohol experience difficulties when the primary disability interacts with external factors after birth. These acquired difficulties, also called secondary disabilities (Streissguth, Barr, Kogan, & Bookstein, 1997), include mental health problems (Burd, Martsolf, Klug, & Kerbeshian, 2003; Famy, Streissguth, & Unis, 1998; Grant, Huggins, Connor, & Streissguth, 2005;  2  O’Connor et al., 2002b; O’Malley & Storoz, 2003), disrupted school experience (Duquette & Stodel, 2005; Green, 2007), trouble with the law, prison confinement, inappropriate sexual behaviour (Streissguth et al.,1997), substance abuse (Baer, Sampson, Barr, Connor, & Streissguth, 2003; Famy, Streissguth, & Unis, 1998; Streissguth et al. 2004), difficulty with employment (Spohr, Willms, & Steinhausen, 2007; Streisguth et al., 1997), and difficulty with independent living (Streissguth et al., 1997, 2004). Notwithstanding students’ experiences of learning problems, academic failure, and school drop-out (Streissguth et al., 1997), some children do persist with schooling and graduate (Duquette & Stodel, 2005; Duquette, Stodel, Fullarton, & Hagglund, 2006, 2007). Researchers have found that the development of secondary disabilities associated with FASD can be prevented or mitigated by protective factors such as early and accurate diagnosis (Astley & Clarren, 1999; Astley, Bailey, Talbot, & Clarren, 2000; Streissguth, et al., 1997), timely access to appropriate interventions and supports (Streissguth et al., 1997), living in stable home environments, (Duquette et al., 2006; Streissguth et al., 1997) and the presence of adults who can act as advocates to guarantee a supportive school environment (Streissguth, 1997; Duquette et al., 2006). In the absence of individual protective factors, such as strong academic skills, good social problem-solving skills, and high self-esteem, many students affected by FASD may be especially dependent on caregivers and school and community environments to buffer or mediate their risk factors (Duquette et al., 2006; Matsen, 1994). In Canada, legislation, educational policies, and educational procedures vary significantly from province to province. The educational policy framework in British Columbia provides a significant role for parents in decision-making and direct involvement  3  in their children’s education (Province of British Columbia, 1995, 2011). Although the literature on parental involvement indicates that the connection between parental involvement and achievement is complex and not always agreed upon (Fan & Chen, 2001), a significant body of literature (e.g., Christenson, Rounds, & Gorney, 1992; Epstein, 1989, 1991, 2001) documents the benefits of parental involvement on students’ academic and social development. In an attempt to create an educational context in British Columbia where students with special needs are able to equally and meaningfully participate, the Province of British Columbia has outlined several policies, procedures, and guidelines that support the delivery of special education. Reflecting the changing values of society regarding support for children with special needs and their families, special education policies emphasize the vital role played by caregivers in the education of their children by working in partnership with educators and other service personnel. The translation of policies and guidelines into practical support for children with special educational needs varies from one context to another. In British Columbia, new programs (Province of British Columbia, 2007) have been implemented to support students with FASD and their families. The programs are also intended to build capacity in school districts for students with FASD and their teachers. Given the dearth of studies involving children with FASD and their caregivers in the British Columbian educational context, it is unclear how educational policies affect school settings within which children with FASD and caregivers interact and how new programs might affect caregivers’ efforts to manage schooling.  4  1.2  Significance In Canada, where FASD is recognized as the leading cause of developmental  disability among children, the disorder is flagged as a pressing public health, education, economic, and social problem. Approximately 9 out of every 1,000 children born in Canada are estimated to be affected by FASD (Health Canada, 2005). While exact prevalence rates are difficult to determine, the publication of Canadian guidelines for diagnosing FASD (Chudley et al., 2005) and an increase in awareness of the more common, but less visible subtypes of FASD, are expected to lead to more accurate estimates of prevalence rates and incidence (O’Malley, 2007). The direct costs associated with this life-long disability have been estimated to be about $1.5 million to $2 million per person over a lifetime; however, the loss of human potential to affected individuals and emotional costs to their caregivers are immeasurable (Health Canada, 2005; Stade, Ungar, Stevens, Beyen, & Koren, 2007). Primary and secondary disabilities associated with FASD present a wide variety of challenges for children with FASD, their caregivers, and professionals who engage with children and their families. For caregivers and professionals, the affected children’s difficulties with memory, language, communication, cooperative play, transitions, and behaviour (Harwood & Kleinfeld, 2002; Premji, Serrett, Benzies, & Hayden, 2004) present particular challenges. How these challenges affect caregivers’ behaviour in response to the experience of children with FASD in the school system is of particular interest in my study. Despite the recognition of caregivers as important partners in the educational context through educational policies and research, studies to date have only involved caregivers of  5  children with FASD as recipients of educational information (e.g., Chasnoff & Rudisill, 2003; Kable, Coles, & Taddeo, 2007) or as co-recipients of interventions (e.g., Frankel, Paley, Marquart, & O’Connor, 2006; Gurwitch, Mulvihill, & Chaffin, 2003, 2006). Qualitative studies involving caregivers of students with FASD (e.g., Duquette & Stodel, 2005; Duquette et al., 2006, 2007, Ryan & Ferguson, 2006a, 2006b) have described caregivers as being actively involved in their children’s schooling and strongly advocating for their children in the face of limited support. Unfortunately, existing studies have focused mostly on experiences of foster and adoptive parents of adolescent students. Anecdotal data and clinical wisdom emphasize early elementary school and the move to middle school as two important “turning points” in the life trajectories of students with FASD and of parents trying to help their children negotiate those turning points (Olson, Oti, Gelo, & Beck, 2009). I have located no studies that examine caregivers’ perspectives about how they manage the schooling of school-aged children with FASD. Conceptualizing data grounded in the world of caregivers of school-aged children with FASD and ordering it into a body of theory provides a way to explain caregiver behaviours in response to the experience of children with FASD in the school system. Sandelowski (1993) argued that the task for scholars in practice-oriented disciplines is to find ways to apprehend and represent phenomena so that knowledge can be advanced and practice influenced. Indeed, intentional practice needs a strong theory base (Glaser, 1978). A substantive theory that explains how caregivers manage their children’s schooling could contribute to theory development and research, have significance for caregivers of children with FASD, and have practice implications for the fields of school psychology and education and human service professions. Capturing caregivers’ perspectives and alerting  6  educators and school administrators about the conditions that influence caregiver behaviour could contribute to improvements in collaboration between schools and caregivers of children with FASD. 1.3  Purpose and Aims The purpose of my study is to develop a substantive theory about how primary  caregivers of elementary school-aged children with FASD in British Columbia manage their children’s schooling. My aims are to explain: how caregivers of elementary school- aged children act as they try to manage their children’s schooling; contextual factors that affect caregivers’ efforts to manage their children’s schooling; and effects of contextual factors on primary caregivers’ efforts to manage their children’s schooling. Contextual factors in this study are conceptualized as micro- to macro-level conditions that influence caregivers and their children. Because the nature of the purpose and aims of the study involve explanation, I judged a qualitative design to be most appropriate. Specifically, I chose grounded theory as a strategy of inquiry because my intent was to generate substantive theory, grounded in data generated from caregivers of school-aged children with FASD. I aimed for the theory to conceptualize and explain how caregivers continuously processed their main concerns. 1.4  Theoretical Basis of the Study As a major theoretical perspective informing the study, symbolic interactionism, as  defined by Mead (1934), Blumer (1969), and Perinbanayagam (1985), offers theoretical  7  propositions linked to self, social interactions, and symbols that can guide a study examining how caregivers manage their children’s schooling when the children are affected by FASD. 1.5  Background of the Investigator Hall, Long, Bermbach, Jordan, and Patterson (2005) argued that background  experiences, associated with disciplinary education and training, sensitize the researcher to form guidelines and reference points to formulate questions and concepts. Background experiences influence the “many selves” that researchers bring to the research situation, which can also affect the interpretation of data. Acknowledging the educational and training experiences I bring to the research situation forms part of an attempt to manage my subjectivities (Morrow, 2005) when acting as the main instrument during the research process. I registered as a clinical psychologist at the Master’s level, following completion of a M.A. degree in Clinical Psychology at a university in Johannesburg, South Africa. My training took place within a framework that sensitized me to the influence of wider systemic factors on behaviour. Rotations in community and hospital settings inspired me to undertake further studies to enhance my knowledge of behaviour of exceptional children. The clinical experiences also sensitized me to the behaviour of caregivers of children with mental health problems and other difficulties. Following my move to Canada, from 1997 to 2002, I worked as a family and children’s therapist in the mental health context in Vancouver. During that time, I obtained valuable experience working with exceptional children, including children with FASD.  8  Through my immersion in the mental health context, I became interested in how mental health issues may impact learning. In 2005, I started my Ph.D. program in School Psychology at the University of British Columbia. My interest in the impact of childhood disorders on caregiver behaviours developed from my experiences as a mental health therapist and school psychology practicum student. Volunteer assessment experiences and exposure to the FASD literature, through academic coursework and practicum experiences, further developed my interest in the substantive area of FASD. Following completion of coursework and comprehensive exams, I finished my internship in a school district in the Lower Mainland of British Columbia. My internship experiences sensitized me to how educational policies influence the educational context in which caregivers interact. 1.6  Organization of the Thesis In this introductory chapter, I provided background information, addressed the  significance of the study, summarized the purpose and aims, and briefly introduced the theoretical basis for the study. I concluded with a short description of my background. This section serves to orient the reader to the organization of the thesis. In Chapter 2, I synthesize the literature to provide the context and to demonstrate the need for the proposed study. In Chapter 3, I discuss the theoretical perspective I used to inform the study and the methodological implications that flow from the underlying theoretical perspective. While methodology embraces the whole scientific quest and covers the principles that guide the generation of knowledge (Blumer, 1969), method refers to the procedures by which the  9  theory is developed. In Chapter 4, I explicate the research method used for the study while attending to the methodological issues that were raised in Chapter 3. I describe the study design and provide definitions for my research terms. I list the research questions and describe ethical considerations, data collection procedures, theoretical sampling, data analysis and theoretical memos, and rigour. In Chapter 5, I describe the sample characteristics to provide a context for the findings and to orient the reader to the nature of the sample. Following an overview of the theory, I describe the core category that was developed and the categories that are related to the core category. I discuss the findings in Chapter 6, where I compare my developed theory with extant theories and the research literature. I discuss the limitations of the research study and the implications for school psychologists, educators and key workers, and conclude with a description of the significance of the theory for caregivers.  10  Chapter 2: Review of the Literature 2.1  Introduction The place of the literature review in qualitative research is an issue of considerable  debate among researchers. The controversy extends to grounded theory research. As pointed out by Cutcliffe (2000) and Heath (2006), some researchers (e.g., Hutchinson, 1993; Strauss & Corbin, 1990) advocate for a literature review before collecting data, to justify and situate the study; others (e.g., Glaser, 1978, 1992; Stern, 1994) argue that a literature search prior to data collection and analysis should be avoided altogether. According to Glaser, whatever literature is necessary to place findings in context will become known as the theory is developed. The extant literature will be incorporated into the developing theory as one more piece of data. Cutcliffe proposed that the differing positions for the place of the literature review are not necessarily contradictory, but represent different positions on the continuum of knowledge generation. Researchers who perform the literature review before beginning data collection and analysis take the position that the most appropriate methodology will be indicated by the state of the knowledge regarding the phenomenon. According to Cutcliffe, researchers who avoid conducting a literature review prior to commencing data collection and analysis (e.g., Lincoln & Guba, 1985; Stern, 1994) claim that they have recognized the dearth of knowledge concerning the phenomenon and have, therefore, decided that a grounded theory approach would be suitable. Glaser, who describes grounded theory as a “general inductive method possessed by no discipline, theoretical perspective, or data type” (Glaser, 2005, p. 141) acts as a  11  spokesperson for researchers in grounded theory who strongly believe that avoiding a literature review in the area of interest at the beginning of the study increases the likelihood that the emergent theory will be grounded in data. According to Glaser (1998): The first step in grounded theory is to enter the substantive field for research, without knowing the problem. This requires suspending your knowledge, especially of the literature, and your experience. The researcher must take a “no preconceived interest” approach and not ask questions that might be on his mind (p. 122). While Glaser’s position on trust in the emergence of concepts during data analysis is clear, it would be problematic for me to use for my study for two reasons. First, Glaser’s (1992) stance, while consistent with the positivistic underpinnings of grounded theory, presupposes the neutrality of the researcher. Glaser has expressed concern that researchers can contaminate theory development with pre-conceived ideas that may not really fit the data, work, or be relevant. Alternatively, Suddaby (2006) purported that contamination of the researcher’s perspective is less of a concern than is the danger of prior knowledge leading to hypothesis testing, “either overtly or unconsciously” (p. 635). Glaser’s stance on the neutrality of the researcher has been challenged by other grounded theory researchers (e.g., Charmaz, 2000, 2006; Strauss & Corbin, 1990) and, as I describe in the next chapter, is not consistent with the ontological and epistemological underpinnings of my study. The second reason is that academic rigour requires a traditional literature review. A review of the literature contributes to meeting requirements of research ethics committees (Strauss & Corbin, 1998), supporting the significance of the study, and indicating whether grounded theory is an appropriate method for funding purposes (McGhee, Marland, & Atkinson, 2007).  12  Students adhering to principles of classical grounded theory, while satisfying academic demands, often navigate these issues by occupying a position of middle ground (see for example, Mordoch, 2005). This position seems to be supported by the literature. For example, Fassinger (2005) gravitated to the middle ground by recommending researchers possess minimal familiarity with the literature in the early stages of conceptualizing the study. Fassinger claimed that the researcher must strike a delicate balance between enough knowledge to focus the sampling and data collection effectively and yet not so much immersion in existing perspectives that the investigation becomes circumscribed by preordained constructs and limited expectations (p.158). To avoid relying on preconceived concepts and derailing the theory, as mentioned by Glaser (1978), but to satisfy academic requirements, I adopted a middle ground position for the initial literature review in this study. In doing so, I also started to address the tension between the original positivistic underpinnings of grounded theory and my own position. I regard reality is a social construction and have been sensitized by previous clinical and educational experiences. Thus, it is impossible for me to enter the research process tabula rasa. I further discuss these methodological dilemmas in Chapter 3. Therefore, the purpose of this chapter is to provide a context for the proposed study, demonstrate the need for the proposed study, critically evaluate studies that bear significantly on the topic, and provide the rationale for conducting the study. In the first section, I discuss the primary and secondary disabilities associated with prenatal exposure to alcohol. In the next section, I describe challenges related to the  13  prevention of secondary disabilities, with reference to obtaining a diagnosis and receiving support, as well as challenges related to the caregiving environment. I follow that description with ways in which these challenges are addressed in the British Columbian context. In the final section, I present a critical analysis and synthesis of studies describing the experiences of caregivers in interactions with the school system to demonstrate the need for the study. Given that this study took place in British Columbia, I make reference to the educational landscape of this province where applicable. 2.2  Primary and Secondary Disabilities School-aged children with FASD have primary and secondary disabilities that affect  their day-to-day functioning in school. Streissguth (1997) defined primary disabilities as the disabilities a child is born with, which reflect the central nervous system dysfunctions inherent in the FAS or FAE diagnosis; secondary disabilities were defined as those that arise after birth and presumably could be ameliorated through better understanding of children’s conditions and appropriate interventions. Primary disabilities caused by alcohol damage to developing brain cells include vision and hearing problems (Burd, Cotsonas-Hassler, Martsolf, & Kerbeshian, 2003); scoliosis, epilepsy, urinary tract infections, and congenital heart problems (Becker, WarLeeper, & Leeper, 1990; Church & Kaltenbach, 1997); and fine and gross motor problems (Barr, Streissguth, Darby, & Sampson, 1990). Other difficulties that affect children’s abilities to function in school include memory problems (Kerns, Don, Mateer, & Streissguth, 1997), speech and language disorders (Timler, Olswang, & Coggins, 2005), problems with adaptive functioning (Jirikovic, Olson, & Kartin, 2008), and behavioural challenges (Burgess &  14  Streissguth, 1990; Nanson & Hisock, 1990; Streissguth et al., 1996). Common behaviours noted in school-aged children include difficulties with communication, transitions, cooperative play, and behaviour modulation (Harwood & Kleinfeld, 2002; Premji, Serrett, Benzies, & Hayden, 2004). According to Streissguth (1997), the basic cognitive, attention, and memory problems experienced by students set the stage for behaviour problems in the classroom and at home, because students repeatedly fail to meet expectations. Over time, patterns of defensive behaviours (i.e., secondary disabilities) develop, which are believed to be preventable with appropriate supports (Malbin, 2002; Streissguth, Barr, Kogan, & Bookstein, 1996). An important four-year study on secondary disabilities and risk and protective factors (Streissguth et al., 1997) provided empirical evidence suggesting the population of individuals with FAS and FAE are at heightened risk for disrupted schooling. They used a life history interview with parents and caregivers of 415 individuals with FAS (33%) and FAE (67%) to identify secondary disabilities, such as mental health problems (90%), trouble with the law (60%), inappropriate sexual behaviour or involvement in sexual offender treatment programs (49%), and substance abuse or confinement in a mental health treatment program (50%). Specifically, in their study, 60% of the subjects who were 12 years and older, and 14% of the subjects who were under age 12 experienced interruptions to their learning processes. The authors noted that suspensions were the most often reported interruptions, with inattention and incomplete work accounting for the most frequent learning problems across all ages. The most frequent behaviour problems included being disruptive in class and not getting along with peers.  15  In an evaluative report of the British Columbia Key Worker and Support Program (a program established to provide assistance to caregivers and service providers associated with children with FASD), Hume et al. (2008) indicated that caregivers in British Columbia perceived their children to experience a variety of secondary behaviours that were both school-related and of a social/emotional nature. Frustration was the most frequent schoolrelated secondary behaviour, involving 73% of the children seeking key worker services. Children’s social-emotional secondary behaviours that were most frequently identified by caregivers included anger problems, behaviour problems, and anxiety. In the absence of individual protective factors, such as strong academic skills, good social problem-solving skills, and high self-esteem, many students affected by FASD may be especially dependent on family, school, and community environments to buffer or mediate their risk factors (Duquette et al., 2006; Matsen, 1994) and to prevent secondary disabilities from developing. As purported by Giunta and Streissguth (1988), families of children with FASD “assume a responsibility far beyond that normally associated with parenting” (p.458). The challenges to the prevention of secondary disabilities will be discussed in the next section. 2.3  Challenges Related to the Prevention of Secondary Disabilities Challenges associated with the prevention of secondary disabilities relate to the  process of diagnosis, the delivery of school-based supports, and caregiving environments. Illuminating these challenges is important because they affect the school-based experiences of students with FASD and, as documented in descriptive studies situated outside British  16  Columbia (e.g., Duquette & Stodel, 2005; Duquette et al., 2006, 2007; Ryan & Ferguson, 2006a, 2006b), appear to affect the experiences of their caregivers. 2.3.1  Challenges Related to the Process of Diagnosis  The complicated profiles and unpredictable behaviours of many children with FASD present unique challenges to those who support them in schools. First, educators and support personnel have to try to understand how the brain of each student affected by FASD responds and how each student can be best supported. Turner (2006) argued that a contributing factor to the challenge is that many children prenatally exposed to alcohol are not diagnosed before school entry or school personnel may be unaware of previous assessment results. Not only are manifestations of the disturbances caused by prenatal alcohol exposure unique to each individual (Malbin, 1993), but also developmental disturbances associated with different stages of development, (i.e., preschool, elementary school, and adolescence) vary and may not be attributed to FASD (Graefe, 1998; Harwood & Kleinfeld, 2002). In addition, most school-based psycho-educational assessments are intended to focus on learning strengths and weaknesses and may not reveal some of the neurological deficits associated with prenatal exposure to alcohol (Blackburn, Carpenter, & Egerton, 2010; Connor, Sampson, Bookstein, Barr, & Streissguth, 2001; Steinhausen, Willms, & Spohr, 1993). Significant cognitive deficits in memory, attention, and executive functioning, which are not consistently captured with overall cognitive scores, can affect the ability of children with FASD to function in school (Kodituwakku, 2007; Streissguth, 1997). How children’s difficulties in functioning in school affect their caregivers’ behavioural responses has not been systematically documented in the FASD literature.  17  A third difficulty identified by Green (2007) is that more specialized (neurological) testing, which is necessary to document deficits in executive functioning (i.e., planning, organization, and attention), may not always be available. Children who have deficits that are undiagnosed or unrecognized may not qualify for the needed supports within the education system. In the absence of diagnosis or identification of a child with FASD, caregivers may not be able to access appropriate services and support (Clarren, Olson, Clarren, & Astley, 2000; Streissguth & Giunta, 1988). Early diagnosis and access to appropriate services are important protective factors identified by Streissguth et al. (1996) in their life history interviews with parents and caregivers of patients 12 years and older. Although appropriate supports and interventions can ameliorate or prevent secondary disabilities associated with prenatal exposure to alcohol, children require early recognition of their disorders. According to Chudley et al. (2005), Canadian guidelines for diagnosis can present a number of challenges regarding the diagnosis of FASD. First, identifying the conditions on the FASD spectrum requires complete histories and physical exams, as well as neurobehavioural assessments. Chudley and colleagues argued that a lack of available evidence and data in key areas (e.g., Canadian growth norms) limits the effectiveness of the diagnostic process. Second, because treatment planning and implementation should be targeted towards the unique needs of the individual and family, a multidisciplinary team approach is essential. Chudley et al. suggested that a limited capacity, even in some large communities in Canada, exists for providing a multidisciplinary team-based approach. While screening should not be equated with diagnosis, Chudley and colleagues (2005) noted that, in some communities with no diagnostic services, screening tools have been used inappropriately in lieu of a proper diagnosis. In addition, Coles (2003) expressed  18  concern that the majority of children on the FASD spectrum do not meet the criteria for a formal diagnosis and, as a result, do not qualify for services and supports. Their inability to qualify occurs despite demonstrating cognitive, social, emotional, and behavioural difficulties associated with the teratogenic effects of alcohol on the brain. The author’s claim is consistent with the findings of Streissguth et al. (1997) that a diagnosis of FAS, rather than FAE, is a protective factor. Given the deficits associated with prenatal exposure to alcohol and the complexities of diagnosis and support, it is important to seek caregivers’ perspectives about managing their children’s schooling. 2.3.2  Challenges Related to the Delivery of School-Based Supports  In addition to difficulties with obtaining a diagnosis, a second barrier identified in the literature pertains to the “assessment-intervention” gap. Ryan and Ferguson (2006a) conducted a three-year qualitative study investigating the process of diagnosis and the experiences of professionals and families associated with four boys and one girl with FASD living in five areas across Alaska. The authors emphasized the need for coordinated services for students with FASD and supports for their families, based on their findings of (a) pervasive effects of children’s difficult behaviours, in the context of limited supports; (b) use of differentiated instruction by experienced teachers but not by beginning teachers; and (c) increased public awareness of FASD, with limited provision of services for children with FASD and their families. In light of their evidence, they suggested that obtaining a diagnosis did not always lead to support for children and their families. The authors identified a need to coordinate services between diagnosis and intervention, with the identification of the family’s support needs as an important study implication.  19  A major difference between the educational landscape in Alaska at the time of Ryan and Ferguson’s (2006a) study and the current landscape in British Columbia is the fact that FAS and FASD were not eligible categories for support in Alaska. Streissguth (1997) pointed out that students with FASD may sometimes be diagnosed with disorders, such as autism, that could potentially lead to supports in school. On the other hand, Ryan and Ferguson concluded that most students with an unrecognized FASD “fall between the cracks” (p. 376). The students may not receive the critical supports and services to avoid problematic outcomes such as school suspensions and expulsions. The FASD scholarly literature has failed to address the question of how caregivers respond to lack of supports for children. It is also not clear how the existence of eligibility criteria for support influence both children and their caregivers. 2.3.3  Challenges Related to the Caregiving Environment  A third challenge is related to caregiving environments. Researchers have increasingly moved toward an ecological approach for understanding the factors that contribute to child development (e.g., Bronfenbrenner, 1977, 1979, 1986, 1992; Garbarino, 1990). The complex interaction between individual and environmental factors is particularly evident when attempting to understand the dynamics of prenatal exposure to alcohol and children’s development. Caregiving environments for children with FASD contribute to our understanding of the effects of prenatal exposure to alcohol on the outcomes for children. Duquette et al. (2006) and Matsen (1994) pointed out that many students affected by FASD are especially dependent on caregiving environments to provide buffers that reduce their risk  20  factors because of the lack of individual protective factors such as strong academic skills, good social problem-solving skills, and high self-esteem. Of the eight universal protective factors identified by Streissguth et al. (1997, 2004), most are related to being raised in a stable and nurturing environment; specifically, living with nurturing parents in a stable and well-resourced home environment for more than 72% of a child’s life. While all children benefit from a stable and nurturing home environment, children with FASD can particularly benefit because the experience can prevent the development of secondary disabilities. Coggins, Timler, and Olswang (2007) concluded that children with FASD, “perhaps more than any other clinical population, live in an extended state of double jeopardy due to the timing, quantity and pattern of maternal drinking and the frequently co-occurring adverse effects of dysfunctional caregiving” (p. 125). Children with FASD, may experience caregiving environments characterized by the continued use of alcohol and/or other substances and/or the presence of physical or emotional abuse; those exposures create more immediate risks. Streissguth et al. (2004) found that 67% of the 415 subjects (aged 6 to 51 years) with FAS/FAE reported experiencing either physical or sexual abuse and/or domestic violence. Zuckerman (1991) reported that children who are raised in families abusing alcohol and other substances are more likely to grow up in environments characterized by social isolation, poor coping skills, and problems with accessing community resources. The increased risk for neurobiological, psychophysiological, and/or psychological deficits for children living in violent and/or impoverished environments is well documented in the literature (e.g., Cicchetti, 2004; Kaufman, Plotsky, Nemeroff, & Charney, 2000).  21  Substance abuse, in combination with factors such as poverty, is more likely to result in mothers giving birth to a child with FASD. Poverty and substance abuse together increase children’s risks that exposure to alcohol will be expressed as significant deficits (Rasmussen et al., 2008) and that they would eventually be entering foster care (Stukes Chipungu, & Bent-Goodley, 2004). Children with FASD are over-represented in foster care (Besinger, Garland, Litrownik, & Landsverk, 1999). Following entry to care, the environment of children can continue being unstable. The stability of the out-of-home caregiving environment of children with FASD is affected by the challenging nature of raising a child with FASD in the context of a lack of support and barriers to accessing support (Hume et al., 2008; Olson et al., 2009). Giunta and Streissguth (1988) noted that caregivers of children with FASD “assume a responsibility far beyond that normally associated with parenting” (p. 458). Nevertheless, as indicated by a Canadian report on guidelines for families caring for children with FASD (Victorian Order of Nurses, 2006), the need for respite care for caregivers is a critical area that has not been adequately addressed in Canada. A recent evaluation of the British Columbia Key Worker and Support Program concluded that caregivers of children with FASD continue to experience unmet needs for respite care, which contribute to placement breakdown (Hume et al., 2008). In one study, 63 licensed foster parents in a central Canadian province confirmed they would consider ending a placement if they did not receive respite care (Brown, Bednar, & Sigvaldason, 2007). The foster parents described feeling taken for granted, having insufficient information about the children, or caring for children with serious behaviour problems. When the living environments are unstable or characterized by frequent changes  22  secondary disabilities become more evident and children’s school functioning may be influenced. Problems in accessing community resources may create additional hurdles for biological families raising children with FASD. Hume et al. (2008) noted that biological parents and grandparents have a unique set of support needs. Similarly to Legge, Robberts, and Butler (2000), Hume and colleagues reported birth parents’ fear of being judged by other members of support groups (e.g., adoptive and foster parents), which led to their hesitation to seek support. In particular, for families from smaller communities, the stigma associated with FASD presents a particular challenge, which affects their willingness to seek help (Alberta Centre for Child, Family and Community Research, 2009). Grandparents who are raising children with FASD experience additional barriers. Although only 1% of children in Canada live with their grandparents, 17% of the participants across British Columbia who accessed the Key Worker and Parent Support program were grandparents. Canadian research studies (Fuller-Thompson, 2005) have found that grandparent-headed households are disproportionately female (59%), Aboriginal (17%), external to the labour force (57%), and living in poverty (>30%). In addition to financial hardships experienced by many grandparents who are taking care of children with FASD, grandparents may not feel comfortable accessing support groups because, in addition to the fear of stigma, they feel out of place with a younger parenting group (Hume et al., 2008). When caregivers are hesitant to access support because they feel out of place or are fearful of being judged, they may not receive the type of help that can contribute to the children’s success in school.  23  The literature provides no insight about how access to support services influences the caregivers’ attempts to manage their children’s schooling or how accessing services might contribute to success. Moreover, potential influences of stigma and the fear of being labeled on caregivers’ actions have not been systematically documented. Studies that determine effects of influences on caregivers’ behaviours and caregivers’ perceptions about environments for successful outcomes are important to advance the agenda to support children with FASD. 2.4  Addressing Challenges Related to the Prevention of Secondary Disabilities in British Columbia As described in the previous section, challenges associated with the prevention of  secondary disabilities include the process of diagnosis, the delivery of school-based supports, and caregiving environments. By exacerbating primary disabilities resulting from the damage to brain cells due to maternal alcohol consumption, systemic barriers and environmental factors enhance negative developmental consequences by the time children enter school. Lack of appropriate supports (in schools and homes) compound the negative developmental consequences for many children with FASD leading to an increase in stress for caregivers and a greater potential for placement breakdown. In British Columbia, the educational landscape has been changing with regards to service delivery for children with FASD and their families. In September, 2006, the British Columbian Ministry of Education committed funding to establish a new FASD provincial outreach program, the Provincial Outreach Program for Fetal Alcohol Spectrum Disorder (POPFASD). The program shares research evidence and resources with teachers, parents,  24  students, and others to build capacity in school districts for students with FASD and their teachers. In addition, the formation of recent partnerships between the Provincial Health Services Authority (PHSA), the British Columbia Autism Assessment Network (BCAAN), and the Fraser Health Assessment Network (FHAN) for Complex Developmental Behavioural Conditions (CDBC) is intended to provide timely assessment and diagnosis for children who live in the Fraser Health area of British Columbia and are suspected of having FASD or other complex developmental behavioural conditions (Province of British Columbia, 2007). As indicated by Special Education guidelines in British Columbia, students who are diagnosed through the CDBC Network may receive extensive support and intervention in schools. Students’ reception of support requires clinical diagnostic assessment by a qualified specialist with information integrated from multiple sources and various professionals from different disciplines (Province of British Columbia, 1995, 2011). The clinical diagnostic assessment is a time-consuming process that depends on interdisciplinary collaboration. Systemic barriers to this process in the British Columbian context include finding physicians that will refer families for the assessment, as well as waiting times for assessments (Hume, Rutman, Hubberstey, & Johnson, 2007; Province of British Columbia, 2007). The contributions associated with availability of support programs, assessment networks, and special education guidelines to success for caregivers and children have not been studied. Moreover, against the backdrop of the changing educational environment, exploration of caregivers’ perspectives on what is important for success would be particularly timely. The current educational environment in British Columbia includes specific eligibility categories for children with FASD. In the British Columbian education system the need for  25  special education services is predicated on a student having been designated with physical disability or chronic health impairment due to: (a) a nervous system impairment that has an impact on movement or mobility, (b) musculoskeletal conditions, and/or (c) chronic health impairments that seriously affect the student’s education and achievement. Students who are diagnosed through the appropriate network, such as children and youth with complex needs, may be included in the category “Physical Disabilities or Chronic Health Conditions,” if their functioning in school is significantly affected by their conditions. Students with FASD may receive interventions and support at school if they are included in the category (Province of British Columbia, 1995, 2011). The purpose of special education in British Columbia is to enable the equitable participation of students with special needs in the educational system; therefore, problems and concerns around the educational functioning of children with special needs should (ideally) be addressed through a process of collaborative consultation. According to educational policies (Province of British Columbia; 1995, 2011), a successful collaborative process has the following features: It is voluntary; there is mutual trust and open communication among the people involved; identification/clarification of the problem to be addressed is a shared task; the goal is shared by all participants; each participant’s contribution is valued equally; all participants’ skills are employed in identifying and selecting problem-solving strategies; and there is shared responsibility for the program or strategy initiated (p. v).  26  The process of consultation assumes that all participants (parents, teachers, and other professionals) have a responsibility to work together in the best interest of students. The importance of a collaborative relationship between schools and caregivers of children with FASD has been anecdotally reported since the mid-1970s by parents, teachers, and clinicians working with children prenatally exposed to alcohol. Nonetheless, studies to date have not systematically explained how caregivers of school-aged children navigate multilayered consultative social situations. The ability of children with FASD to follow instructions and behave appropriately varies from day-to-day and across settings (Burgess, 1994; Burgess & Streissguth, 1990) and, according to Timler and Olswang (2001), inconsistency in behaviour affects the perceptions of caregivers and teachers with regards to the types of educational supports needed to facilitate optimal performance. As argued by Streissguth (1997), the different perceptions of teachers and parents about children with FASD often results in disagreement about the best way to support the children, leading to less effective service provision. Collaboration between teachers and caregivers will be affected by factors such as different perceptions and trust (Blue-Banning et al., 2004). Missing from the current body of literature about FASD is knowledge about how caregivers of elementary school students with FASD construct their realities as they interact with schools, interpret and assign meaning to their experiences, and base their actions on assigned meanings. Capturing caregivers’ perspectives and explaining how they manage could be an important step in improving the collaboration between schools and caregivers. A few limited reports (e.g., Hume et al., 2008) indicate that factors, such as fear of stigma or being judged, affect parents’ efforts to seek support. Open communication and trust with  27  schools may be problematic for biological parents of students with FASD because of the stigma associated with drinking during pregnancy. What is less clear is how factors such as stigma might affect the caregivers’ interactions with, and perceptions of, educational environments. In addition to systemic challenges, the nature of the caregiving environment presents challenges for many families raising children with FASD. Such challenges can include the secondary disabilities associated with FASD (Brown, Bednar, & Sigvaldason, 2007); lack of support or barriers to accessing support (Hume et al., 2008; Olson et al., 2009); limited resources (Payley, O’Connor, Frankel, & Marquardt, 2006); and, for some families, challenges related to the continued use of alcohol and/or other substances and/or the presence of physical or emotional abuse (Fagerlund, Autti-Ramo, Hoyme, Mattson, & Korkman, 2011; Streissguth et al., 2004). Olson et al. (2009) reviewed informal literature and a small body of systematic studies of FASD and caregiver function and concluded that a positive and stable family environment for school-aged children is not the norm. They pointed out that conduct problems raise questions for caregivers about causes of their children’s behaviour and what constitutes reasonable expectations. After reviewing anecdotal data and clinical wisdom captured in the informal literature, the authors suggested that early elementary school and the move to middle school present important “turning points” in the life trajectories of students with FASD and of parents trying to negotiate the turning points. Recognizing the challenges associated with raising a child with FASD, the Province of British Columbia recently introduced new approaches to provide assistance to families of children and youth with FASD and similar conditions. Two support programs introduced in most communities in  28  British Columbia during the latter half of 2006 were the Key Worker Program and Parent Support (Province of British Columbia, 2007). Key workers support caregivers, family members, and service providers to identify ways to adapt children’s environments in response to their needs. They strive to create conditions for families to become the best advocates for their children and to provide parents with information about supports that may be available in or near their communities. Parent support includes local parent and grandparent FASD training, parent mentoring, and parent support groups (Province of British Columbia, 2007). Because there is a dearth of studies involving caregivers of children with FASD in British Columbia it is unclear whether or not access to support programs affects caregivers’ behaviour or their interactions with their children’s school environments. In an attempt to address the dearth of research involving students and parents in the educational context, researchers have conducted studies that describe the experiences of mostly adolescent students with FASD and their foster and adoptive parents. I will discuss these studies in the next section. 2.5  Caregiver Experience in Interactions with the School System There has been a focus in the FASD literature on incidence (e.g., Habbick, Nanson,  Snydre, Casey, & Schulman, 1996; Robinson, Conry & Conry, 1987) and diagnosis of FASD (e.g., Astley & Clarren 1999, 2000; Godel et al., 2000), IQ scores of children with FASD (e.g., Burgess & Streissguth, 1990; Steinhausen, Willms, & Spohr, 1993), and characteristics of children with FASD (e.g., Dufour, Williams, Campbell, & Aitken, 1994); few studies have involved caregivers of children with FASD in the educational context.  29  My review of the literature indicates that the caregivers of students with FASD involved in intervention studies rated their children’s behaviour (e.g., Johnson & Lapadat, 2000) or were recipients of interventions (e.g., Chasnoff & Rudisill, 2003; Frankel, Paley, Marquart, & O’Connor, 2006; Gurwitch, Mulvihill & Chaffin, 2003, 2006; Kable, Coles, & Taddeo, 2007). Clark, Hughes, and Jaswal (2010) reviewed the FASD intervention literature and concluded that intervention studies to date have been focused on improving children’s behaviour, school performance, social skills, and executive functioning. The studies have not focused on perspectives and behaviours of caregivers. The extant research leaves a gap in understanding how caregivers of children with FASD interact with school systems. I identified studies about caregivers that were conducted by researchers in the United States and Eastern Canada (e.g., Duquette & Stodel, 2005; Duquette et al., 2006, 2007, Ryan & Ferguson, 2006a, 2006b); those studies described the experiences of both students with FASD and their caregivers. Using an adapted grounded theory approach (Strauss & Corbin, 1998), Duquette and Stodel (2005) explored the educational experiences of seven adopted children/adolescents/young adults (aged 9 to 28 years), from the perspective of the adoptees and their 11 adoptive parents. Three of the young adult participants provided a retrospective view of their school experiences. Data were collected through questionnaires, which consisted of open-ended items, and semi-structured interviews. Some researchers (see for example, Tan & Hall, 2007) point out that, only through interactions among researchers and participants in naturalistic settings, can local and shared constructions of reality be drawn out, refined, interpreted, and compared. Questionnaires do not provide the kind of access to local and shared constructions of reality equivalent to in-depth interviewing in naturalistic settings. Parents were asked to describe the process of obtaining a diagnosis, the services  30  their children received in school, the nature of their children’s inclusion in schools, the elements of a successful school experience, and their concerns and aspirations for their children. The study findings suggest that all of the children experienced problems in the areas of reading and math and, consistent with the findings of Streissguth et al. (1996), the children had either occasional or long-standing behaviour problems. Duquette and Stodel (2005) attended to trustworthiness of the findings through triangulation and member checks; however, a study limitation included the retrospective nature of some of the interview data. Furthermore, they indicated that all of the participants were “middle class adoptive parents from the cultural majority,” (p. 57) who advocated for their children and provided a stable home environment. While birth parent status has been associated with higher parenting role-related stress (Paley et al., 2006), there is a paucity of data about the experiences of birth parents in interactions with the school system. Duquette and Stodel’s (2005) study contributes to the FASD literature in two ways. First, it defined a “successful school experience” from the perspective of individuals with FASD and their adoptive parents, specifically academic achievement, obtaining a high school diploma, and social inclusion. Second, their findings highlighted four elements contributing to a successful school experience for children with FASD: (a) accurate diagnoses; (b) appropriate programs and services (i.e., the availability of specialized programs as required and the assignment of a paraprofessional, if required); (c) caring teachers (i.e., teachers who are knowledgeable about FASD, prepared to work with parents, and willing to make accommodations); and (d) parents advocating for their children and providing ongoing support.  31  In two follow-up studies, Duquette et al. (2006, 2007) attempted to understand the educational experiences of adolescents who persisted in high school and graduated. The participants in the studies included eight adolescents ranging in age from 15 to 20 years, and 16 adoptive parents who resided in either Canada or the United States. The researchers used a collective case study method and a phenomenological conceptual framework. Two conditions emerged from the data that strongly contributed to persistence: social interaction; and strong and unwavering advocacy and support from caregivers. The findings extend existing work from Duquette and Stodel (2005), which indicated the importance of parental advocacy for ensuring a successful school experience for children with FASD. Studies of children and their caregivers indicate that the necessary support from the school and community is not consistently forthcoming and students persist mainly due to strong advocacy from their adoptive parents. The literature on FASD (e.g., Streissguth, et al., 1996, 1997) also points to a stable home environment and the presence of an adult advocate as protective factors against secondary disabilities. The findings add to Murray’s (2003) research by including advocacy as an important protective family characteristic and a protective factor that mediates the risks associated with FASD (Duquette & Orders, 2010; Duquette et al., 2006). Linking protective factors to positive educational outcomes extends Streissguth et al.’s (1996, 1997) work. Nonetheless, studies have only provided descriptions of the adoptive parents as strong advocates for their children who are actively involved in their children’s schooling. To address the gap in the FASD literature, study designs need to include more caregiver types (e.g., biological parents, foster parents and grandparents), capture the perspectives of caregivers of school-aged children, and move beyond description  32  of caregiver experiences to conceptualizing and explaining their behaviours and the conditions that influence their behaviours. Ryan and Ferguson (2006a) conducted a three-year qualitative study to investigate the process of diagnosis of FASD and the experiences of professionals and families. Their study sample included four boys and one girl (aged 3 to19 years) with FASD, living in five areas across Alaska. Their study revealed similar themes to earlier studies but added the voices of biological parents, extended family members, parent advocates (in this context, parents who support a family through the diagnostic process), teachers, and other professionals involved with the children with FASD. They completed over 135 interviews with 71 participants. Consistent with other studies (Duquette & Stodel, 2005; Duquette et al., 2006, 2007), Ryan and Ferguson (2006a) indicated that families were frustrated and overwhelmed by the challenging behaviours of their children. They were also frustrated by the absence of community and school-based services and/or lack of consistent or sufficient services. Ryan and Ferguson noted that persistent attempts were made by parents to find sufficient services for their children and the consequences of such persistence for parents’ emotional well-being. Ryan and Ferguson raised several unanswered questions: namely, what factors did the families think contributed to the lack of provision of services and supports; what supports did families identify as helpful; and why did the families not receive the supports? Furthermore, their findings were situated in the Alaskan context when FASD was not an eligibility category under the U.S. Individuals with Disabilities Education Act (IDEA). Educational policies (which are based on the ideological values of society) guide teachers and other school professionals, influence the governance of school boards, and affect the settings where children and caregivers interact. How educational policies in British Columbia affect the  33  settings where caregivers and children interact has not been addressed in the FASD literature. Indeed, accessing the perspectives of caregivers with children attending schools in British Columbia would be crucial to determine how potentially helpful policies might affect the children’s success. An unpublished evaluation of a pilot project in British Columbia explored experiences of students with FASD and their parents, in interactions with the British Columbian school and support systems (Shepard, Guenette, & Crawford, 2005). The project, which involved interdisciplinary assessment and a support project for 15 students (aged 7 to 15 years) with suspected FASD, was implemented to provide timely diagnosis, assessment, and planning for children. To assess the effectiveness of the diagnosis and assessment process, the researchers evaluated caregivers’ levels of satisfaction with services, their needs and concerns, and support they received while participating in the project. The foster parents in Shepard et al.’s (2005) study indicated that they struggled to persuade educators and school administrators to understand their children’s learning and behavioural needs. They actively advocated for their children. The authors reported the explanatory and affirming value of receiving a diagnosis for some participants (but not all) and emphasized the need for school supports. Some parents expressed their concerns about the process of diagnosis, which could lead to further exclusion rather than concrete services for their children. Parents were apprehensive about obtaining adequate support, especially when their children moved to high school. Shepard et al.’s results are consistent with studies conducted by Duquette and colleagues (Duquette & Stodel, 2005; Duquette et al., 2006, 2007).  34  The report by Shepard et al. (2005) documented caregivers’ struggles and fear of stigma, which potentially prevented caregivers from engaging in actions that could lead to help for their children in the school system. The research results did not explain factors that affect children’s success and effects on caregivers’ behaviours. The report adds the voices of British Columbian caregivers to the literature; however, the results do not address caregivers’ approaches to these situations and effects of factors, such as fear of exclusion for their children. 2.6  Summary I have indicated the necessity for a literature review and critically evaluated only  those studies that bear significantly on the topic and provide the rationale for conducting this study. I have discussed primary and secondary disabilities associated with FASD and summarized challenges related to the prevention of secondary disabilities. I have summarized how challenges have been addressed in British Columbia, followed by my analysis and synthesis of qualitative studies describing caregiver experiences in interactions with the school system. School-aged children with FASD have primary and secondary disabilities that significantly affect their day-to-day functioning in school. Challenges exist with regard to the prevention of secondary disabilities, specifically, for the process of diagnosis, delivery of school-based supports, and for the caregiving environment. While special education policies for the support of children with FASD exist, effects of such policies in the British Columbian educational context have not been addressed. Some factors, such as fear of judgment or fear of their children being labeled, seem to prevent caregivers from accessing the kind of help  35  needed by their children to succeed. Most studies on caregiver experiences have explored the educational experiences of small numbers of individuals with FASD from the perspectives of the individuals and their adoptive parents or other family members and professionals (Duquette & Stodel, 2005; Duquette et al., 2006, 2007; Ryan & Ferguson, 2006a, 2006b). The studies have identified elements that contribute to a successful school experience. Findings across studies indicate that support from schools is often absent or inconsistent and that caregivers need to persistently and strongly advocate for appropriate programs and services (Duquette & Stodel, 2005; Duquette et al., 2006, 2007; Ryan & Ferguson, 2006a, 2006b). I concluded the chapter by synthesizing qualitative studies of caregiver experiences in interactions with the school system. These studies showed that caregivers have been actively involved in their children’s schooling and strong advocates for their children in the face of limited support. Most studies have accessed adoptive parents of adolescent students. No studies have examined the caregivers’ perspectives about how they manage the schooling of their child with FASD. The FASD literature has failed in systematically addressing how children’s difficulties in functioning in school affect the behaviour of their caregivers, what care providers think is important about their environments for successful outcomes, and how educational policies and factors such as stigma might affect caregivers’ interactions with and perceptions of educational environments. There are gaps in our understanding about how caregivers navigate multilayered social situations or make sense of things, as they act and interact within the school systems, or how the school system affects the caregivers’ efforts to manage their children’s schooling. Focusing on the perspectives of multiple types of caregivers for school-aged children with FASD and explaining their behaviours would add to the literature. I have identified the gaps in the literature which underline the importance of  36  accessing the perspectives of caregivers who have school-aged children attending schools in British Columbia. In Chapter 3 (Theoretical Perspective), I will provide an overview of the theoretical perspective that has informed my study and justify my processes underlying the research choices I have made and actions I have taken. I will begin with the theoretical perspective that guides the study, followed by the use of grounded theory as a method, and finish with the criteria for rigour.  37  Chapter 3: Theoretical Perspective 3.1  Introduction To address the issue of quality in qualitative research, scholars/authors propose  critically examining descriptions of ontology, epistemology, and methodology (Lincoln & Guba, 1985) and demonstrating the fit between theoretical perspectives, methodology, method, and research questions (Crotty, 1998; Edwards & Titchen, 2003). Moreover, Tan and Hall (2007) call for “purposefully leveraging” (p. 589) the respective strengths of an informing theoretical perspective and chosen strategy of inquiry. Using this background, my purpose in this chapter is to discuss the theoretical perspective I used to inform my study and to justify the process behind the research choices I made. My reflexivity about the theoretical perspective that guided the study process is important because research questions, data collection, and data analysis are influenced by the theoretical perspective. In the first section of this chapter, I describe the main theoretical perspective that informed the study: symbolic interactionism. While interpretations of symbolic interactionism are numerous (Reynolds, 1993) and discussion of various interpretations is beyond the scope of this chapter, I argue that symbolic interactionism, as defined by Mead (1934), Blumer (1969), and Perinbanayagam (1985), offers theoretical propositions that can effectively guide a study examining how caregivers manage their children’s schooling when the children are affected by FASD. I discuss concepts from symbolic interactionism, which I regard as being central to the study. I also discuss the strengths, limitations, and ontological  38  and epistemological underpinnings of symbolic interactionism. I conclude the section with a summary of the methodological implications of symbolic interactionism. In the second section, I describe the methodological implications that follow from the main theoretical perspective. In “adopting a position of intense methodological awareness” (Seale, 1999, p. 3), I explain the framing of the overall research question; justify the use of grounded theory as a strategy of inquiry, including how I navigated between Glaser’s (1978, 1992, 1998) and Strauss and Corbin’s (1990) approaches to data analysis; pay attention to how “leveraging” the guiding theory and the strategy of inquiry can enhance the quality of the study; and finally, argue for taking up criteria for rigour in addition to those identified by Glaser (Crotty, 1998; Hall & Callery, 2001; Higgs & Titchen, 1998). 3.2  Symbolic Interactionism Symbolic interactionism is an interpretive theoretical perspective (Reynolds, 1993).  In linking the concepts of mind, self, and society, Blumer (1969), who coined the term “symbolic interactionism,” developed Mead’s (1934) ideas into a theoretical perspective, which sought to explain human behaviour in terms of meaning derived from interaction with significant others. Blumer’s (1969) definition of “symbolic interaction” is as follows: The term refers, of course, to the peculiar and distinctive character of interaction as it takes place between human beings. The peculiarity consists in the fact that human beings interpret or “define” each other’s actions instead of merely reacting to each other’s actions. Their “response” is not made directly to the actions of one another but instead is based on the meaning which they attach to such actions. Thus, human interaction is mediated by the use of symbols, by interpretation, or by ascertaining the  39  meaning of one another’s actions. This mediation is equivalent to inserting a process of interpretation between stimulus and response in the case of human behaviour (p. 78-79). The premises of symbolic interactionism, as defined by Blumer (1969), are that human beings act towards things on the basis of the meanings that the things have for them; meaning arises from social interactions between people; and meanings of things are modified through an interpretive process as humans deal with things they encounter. Concepts contained in these premises are important to the current study and are explored further in the next section. 3.2.1  Concepts  The concepts underlying symbolic interactionism that I regard as central to the study are: the self, objects, symbols, the act, social interaction, and societies. I describe the concepts in the following sub-sections. 3.2.1.1 The Self Mead (1934) articulated the origins and actions of the self. In Mead’s view, human society is composed of individuals who have “selves”. The self is constantly emerging and is defined and redefined by interactions with significant others. As emphasized by Blumer (1969), Mead viewed the self as process. During interactions with others, humans incorporate the definitions made by others through the process of role-taking. In Mead’s view, the process of role-taking makes human society possible. As humans learn and use symbols  40  (mostly spoken language) and develop meanings for objects in their environments, they develop a mind that is both reflecting and reflexive, or acting toward itself. Mead (1934) emphasized the human capacity for having perspective on oneself. In communicating with the self, humans become the object of their own actions (Reynolds, 1990). According to Blumer (1969), the self is the mechanism that facilitates internal (interactions with self) and external (interactions with others) conversations. Perinbanayagam (1985) extended Blumer’s idea of the self, by purporting the self exists only as a facet of interaction or dialogic acts. Self and communication, according to Peribanayagam, are intertwined in that communication cannot happen apart from the presence of selves and selves find their possibility and existence in dialogic acts, or conversations. Mead (1934) argued that two components of the self are acting together, the I and the me, allowing for both dialectical and reflexive processes. As pointed out by Perinbanayagam, Mead’s I and me have been referred to as the subjective and objective aspects of the self. The I is the part of the self that spontaneously responds, while the me is that part of the self that represents the expectations and meanings of the group. Blumer (1969) described selfinteractions as a process of making indications. Mead’s concepts of the self and selfindications are important in that they allow for internal reflection prior to acting. Consider the following “self-interaction” from a participant in the current study: I need support for my daughter… she’s going to learn… she’s going to have a heck of a time, I’m thinking to myself …but not look at it as a negative thing but as a positive thing, so that I can learn as well and learn with her… yeah… so that’s how it worked out to be (1.1, lines 482-486).  41  In this case, self-interaction served as a mechanism for directing a caregiver’s future action to initiate assessment for her daughter. Symbolic interactionism’s focus on the self, specifically, its allowance for internal reflection prior to acting (Blumer, 1969), has implications at the methodological level for this study. Edwards and Titchen (2003) proposed that inner conversations or reflections may be the vehicle by which participants organize their experiences, in the case of this study, how caregivers manage their children’s schooling. The self emerges from, and to some extent, reflects the larger social structure, but simultaneously creates and changes that same structure. Blumer (1969) argued that people’s actions produce the very structures within which their activities take place. 3.2.1.2 Objects According to Blumer (1969), the “worlds” that exist for human beings and their groups are composed of physical objects (e.g., plastic container), social objects (e.g., students, caregivers, or behaviours) and abstract objects (e.g., educational policies or individual education plans). An object is anything that can be referred to and exist as a product of symbolic interaction. Objects do not have inherent meaning. Instead, the nature of an object consists of the meaning it has for a person. An object may therefore have different meanings for different individuals. Consider the different meanings two caregivers assign to the individualized education plan for their children: [It is] a very, very focused meeting… the focus on the strength first and foremost and then it focuses on weaknesses… they do their best to help out my recognizing the weakness and try and resolve it and how to make it better for them (2.1, lines 450452), and  42  The IEP is another thing that you’re supposed to… as a parent, you’re asked to sign them and they become a legal document and they become… your signature becomes… in my view… an approval of what they’re going to do (4.1, lines 97-100). While caregivers may symbolically subscribe to the same shared notions of the individual education plan at a broader level, local meanings can differ and depend on interactions in a given situation. 3.2.1.3 Symbols As mentioned before, the notion of symbols underpins Blumer’s (1969) premises. Symbols, as referred to by interactionists, are primarily spoken language (Tan & Hall, 2007) but can also include non-verbal communication. A central focus for symbolic interactionism is the acquisition and generation of meaning. Meanings are acquired and negotiated through continuing interpretative processes of everyday social interactions, modified through interpretation, and communicated to others through symbols. Meaning, as defined by interactionists, must be recognized as changing over time. The researcher is, therefore, required to investigate shifts and trajectories of experience and the influences that affect perceptions and identities of participants (Kearney, Murphy, & Rosenbaum, 1994). 3.2.1.4 The Act Perinbanayagam (1985), in reviewing Mead’s stages of the act, concluded that human life consists of a series of acts, the product of which is meaning. Perinbanayagam introduced the term “dialogic acts” to conceptualize human acts. Acts are characterized by communication and language. Blumer (1969) argued that action is constructed from what  43  individuals take into account as they try to cope with the world. Group action, in Blumer’s view, can be defined as the fitting together of lines of action through role-taking. By making indications to themselves and by interpreting what is indicated, people forge together lines of action. To act, an individual has to set goals, map out lines of behaviour, interpret the actions of others, and continuously assess situations. Perinbanayagam (1985) suggested that humans exist in a framework of time and, unlike other animals, are conscious of the temporal process. The temporal order has been culturally devised and is available as concrete and culturally defined units (e.g., the school year). Acts are fulfilled in full awareness of the temporal process and its sequences. Temporal reality is acknowledged and maintained by members of the group to which each person belongs and becomes “an essential feature of social acts as well as of self, consciousness, and discourse” (p. 8). 3.2.1.5 Social Interaction Mead (1934) saw social interaction as the crux of society. Blumer (1969), who referred to Mead’s social act as “joined action,” focused on society as a process and as socially constructing reality. Social interaction can be non-symbolic, where human beings respond directly to one another’s gestures, or symbolic, where actions are founded on the basis of the meaning yielded by interpretation (Blumer, 1969). People are constantly involved in interpretive interaction. Symbolic interactionists emphasize that individuals share one another’s behaviour, rather than merely respond to one another’s behaviour (Reynolds, 1993). Interaction itself is the unit of study. In Perinbanayagam’s (1985) view, the interaction  44  of a person with at least one other person in the construction of “stable meanings, relationships and worlds” (p. 3) forms the social act. Social acts are often characterized by the presence of problematic events (Perinbanayagam, 1985). People engage in social acts to confront and overcome problems and to do this, they use strategies and invest effort, creativity, and interest. Perinbanayagam argued that, rather than developing individual acts in relation to problems, people often routinize their acts, leading to a schedule of activities that make up the everyday lives of people. While other people, customs, or traditions can exercise control over these schedules, people can also adjust these schedules. 3.2.1.6 Societies From Mead’s (1934) vantage point, human behaviour unfolds in the association of actors with one another and is explained through consideration of the collectivities of which actors are a part. Mead (1934) viewed “society” as individuals in interaction and in association with each other. Society is established dynamically and interactively. Blumer (1969) defined human society as “people meeting their conditions in life” (p. 74). Because meanings that form society can be changed and individuals can change the myriad of meanings that form their society, society is a social product (Reynolds, 1990). Symbolic interactionism minimizes the notion that structural features limit society being formed as a social product. Actors are able to form conceptions of the perspectives held by others. They can take each other’s point of view and guide their behaviour to fit the lines of action of others (Mead, 1934). Reference groups are those whose perspectives are shared by individuals. The basis of group life, as seen by Mead, is the ability of actors to take the role  45  and attitude of others. For example, the caregivers in the proposed study may or may not have reference groups that include other caregivers of children with FASD, other parents at their children’s schools, or members of support groups they attend. From Mead’s discussion of society, symbols, and role-taking (even for caregivers who isolate themselves from society by excluding caregivers of children with FASD as a reference group), society, and the group are ever-present. Caregivers carry with them the mental images of the groups and society in which they dwell (Reynolds, 1993). 3.2.2  Strengths of Symbolic Interactionism  Tan and Hall (2007) argued that an enumeration of symbolic interactionism by Reynolds (1990) best captures its theoretical strengths: reality is understood as a social production; interaction is symbolic; humans have the capacity to engage in self-reflexive behaviour; the group is an important factor in shaping and motivating behaviour; society is as ongoing process; and social and physical environments set limits, but do not determine behaviour (p. 593). The theoretical propositions, captured by Reynolds’ enumeration of symbolic interactionism’s strengths, show potential for guiding a study that examines how caregivers of children with FASD manage their children’s schooling. At the heart of the interactionist perspective is the issue of personal agency, which refers to the ability of people to construct and influence social reality and shape their social worlds (Sandstrom & Fine, 2003). Symbolic interactionism places the participants in my study as agents who, rather than merely responding to what plays from “outside, inside or both,” interpret what confronts them and organize their actions based on those interpretations (Blumer, 1969, p. 62). Even  46  when activities are limited by constraints of social institutions, such as schools, actors can still have a “modicum of autonomy” (Perinbanayagam, 1985, p. 53). They can choose to withhold action, inspect, judge, determine possibilities, and direct their action (Blumer, 1969). Because symbolic interactionism highlights the idiosyncratic, personal, and social construction of the meaning of experience (Edwards & Titchen, 2003), it has much potential to guide a study examining caregivers’ perspectives. The theory also emphasizes the need to examine human interactions (Blumer, 1998; Mead, 1934), which lends itself to a study of caregivers’ behaviours as they manage their children’s schooling. The theory provides this researcher with a way to understand how caregivers manage their children’s schooling in terms of how they act, how they make sense of their own and others’ actions, and how they are motivated by their perceptions. Furthermore, the theory facilitates my insights into the ongoing process of social life as it is lived by caregivers over time and on a daily basis during social interactions. 3.2.3  Limitations of Symbolic Interactionism  Limitations to symbolic interactionism have been raised by “insiders” such as Meltzer and Denzin (as cited by Reynolds, 1993) including: a lack of conceptual clarity; no detailing of strategies to assess and measure interaction processes; an overemphasis on meaning at the cost of attention to social structure; a failure to address the political system sufficiently; a lack of attention to the positive adaptive aspects of a “fragmented set” (p. 130) of multiple identities; and minimization of the effect of biological factors on behaviour.  47  “Outsiders,” such as Reynolds and Reynolds (1973) concurred that symbolic interactionism manifests an astructural bias and is bound to be ahistorical and apolitical (Reynolds, 1993). It fails to connect face-to-face accounts with structural contexts, producing an idealistic picture of social reality. In other words, attention to social and historical conditions and the role of macro phenomena, such as the role of power on interactions and the way power can inhibit marginal groups from voicing their realities, is lacking (Hall, 1998; Kushner & Morrow, 2003; Stryker, 1987). Social structure is not well defined in the symbolic interactionist literature despite its close relationship with agency and importance in examining social interaction (Nairn, 2009). According to Nairn, social structure is “patterns of behaviour that re-occur” (p. 2). Applying Nairn’s line of reasoning to the current study, teacher-caregiver interactions might be better understood from understanding the structural location of “teacher” and “caregiver.” This location influences the way interactions take place, in the context of broader social, economic, and historical factors. Caregivers’ behaviours and their understanding of their circumstances are affected by structural factors. With regard to the criticism that symbolic interactionism is unable to adequately conceptualize macro phenomena, such as the role of power and its influence on interactions, Brown (2004) pointed out that this potential weakness has to do with how symbolic interactionism is practiced, rather than with the theory itself. Reynolds (1993) concluded that textual material dealing with macrosociological matters has merely been overlooked. Hall (1987), for example, contested the view that symbolic interactionism does not attend to macro-level realities in his review of interactionist scholarship. Hall presented a set of analytical categories (e.g., collective activity, network, conventions-practices, resources,  48  processuality-temporality, and grounding) as a paradigm for studying social organization. He focused on the meso domain, where situated activity, history, and structure converge. Dennis and Martin (2005) also refuted the criticism that symbolic interactionism ignores power by pointing out the literature on deviance and education, which focuses on the way power relations are enacted and sustained and how they contribute to the structuring of societies. While macro-level realities have been partially addressed, symbolic interactionism appears to be limited in terms of its attention to social structure, especially when compared to functionalists or critical theorists (Maines, 1977). Symbolic interactionists “emphasize social process rather than social structure as the imagery appropriate to the study of ongoing human group life” (Lal, 1995, p. 423). A focus on the microsystem of interactions makes the wider context in which interactions take place, less of a concern for symbolic interactionists. In a study investigating caregivers’ management of their children’s schooling, the wider context and the potential effects of cultural belief systems in terms of supporting children with FASD in schools may be important. I discuss the ontological and epistemological underpinnings of symbolic interactionism next. Foregrounding these assumptions is important because they have methodological implications for my study. 3.2.4  Ontological and Epistemological Underpinnings of Symbolic Interactionism  Lincoln and Guba (1985) referred to ontology as the form and nature of reality and what can be known about it and epistemology as the nature of the relationship between the knower and what can be known.  49  The ontological position of symbolic interactionism is that an objective reality exists; however, multiple locally-constructed understandings of reality or meanings can emerge out of day-to-day interactions (Tan & Hall, 2007). Reality is consequently understood as a social production (Reynolds, 1990). Symbolic interactionism could therefore be positioned between the postpositivist stance, with its acknowledgement of an objective reality that is only apprehended and measured imperfectly (Lincoln & Guba, 2000) and the constructivist stance, with its adherence to a relativist position that assumes multiple, apprehensible, and equally valid realities (Schwandt, 1994). At the epistemological level, symbolic interactionism is positioned closest to constructionism, with its acceptance of human beings as active constructors of meaning (W.A. Hall, personal communication, October 5, 2007). Symbolic interactionists view the investigator and object of investigation as interactively linked and co-creators of the findings during the investigative process (Tan & Hall, 2007). Understanding is co-created, and reality is understood through and with people and text. The process of communication, especially language, enables shared understanding to take place, which is how symbolization occurs. 3.2.5  Summary of Methodological Implications of Symbolic Interactionism  From the preceding discussion of the underlying premises and ontological and epistemological underpinnings of symbolic interactionism, my methodological position that follows is fourfold: First, because symbolic interactionism acknowledges personal agency and respect for the actor and the implications of a point of view, the focus on my investigation will be on understanding how caregivers interpret and judge the actions of self and others, by employing methods that captured the participants’ points of view and enable  50  them to speak for themselves (Lal, 1995). Because symbolic interactionists hold that the researcher needs to explicate the process by which meaning is developed and the nature of meanings that are represented in interactions between or among human beings (Schwandt, 1994) and meanings need to be understood, my data should be collected through in-depth interviews, which allow me to question meaning and increase my understanding of implicit and explicit meanings. In-depth interviews provide the space to learn about the decisions participants make about actions, the meanings they attribute to their actions, and the interpretations they make of their own, and of others’ actions (Lal, 1995). Second, using symbolic interaction as a theoretical framework places emphasis on discovering what is going on in the substantive area being studied, by “(lifting) the veils that obscure …what is going on… by getting close to the area (of group life) one proposes to study” (Blumer, 1969, p. 39); points of resistance can be recognized in observations (Blumer, 1969). Only through interactions among the researcher and participants in naturalistic settings, can the local and shared constructions of reality be drawn out, refined, interpreted, and compared (Tan & Hall, 2007). Seaman (2008) indicated that “comparing observational data with interview data, for example, can reveal the extent to which respondents individually identify with or abandon the conceptual or material artifacts used publicly in collective situations” (p. 12). The reason for this is that researchers can observe behaviour rather than just having it described in interviews. In other words, methodologically, participant observation is useful in observing behaviour in response to lines of action of others. Third, acknowledging the view that humans continuously adapt to an ever-changing social world, I am expected to account for process or change over time. Human group life  51  takes on the character of an ongoing process through the process of symbolic interaction. Through the process of definition and interpretation, lines of action are fitted together. Through constant redefinition, new objects, new relations, and new types of behaviour are formed (Blumer, 1969). Fourth, because symbolic interactionists claim that document analysis contributes to bringing researchers in close contact with the social worlds of their participants (Blumer, 1969), I will incorporate document analysis in my study. Understanding the meaning participants make of their experience depends on understanding the context, among other factors (Morrow, 2005) and analyzing documents (e.g., educational policies) supplements the data from interviews. Blumer (1969) concluded that “human documents may be very serviceable in aiding the student to acquire an intimate acquaintance with the kind of experience he is studying, in suggesting leads, in enabling insight, and in helping him to frame more fruitful questions” (p. 125). In a study revolving around the substantive areas of FASD and caregiver-school interactions, sources of imagery available to caregivers through institutions, such as the school, the mass media, and popular culture, may be important since they can “influence the process of collective definition and the construction of action” (Lal, 1995, p. 425). 3.3  Further Methodological Implications of the Theoretical Perspective: Research Questions, Strategy of Inquiry, and Rigour In this section, I continue to address the methodological implications that follow from  using symbolic interactionism. I explain my framing of the overall research question, justify my use of grounded theory as a strategy of inquiry, including how I navigated between  52  Glaser’s (1978, 1992, 1998) and Strauss and Corbin’s (1990) approaches to data analysis; describe my view of how “leveraging” the guiding theory and the strategy of inquiry can enhance the quality of the study, and finally, argue for taking up criteria for rigour in addition to those identified by Glaser (Crotty, 1998; Hall, 1998; Higgs & Titchen, 1998). 3.3.1  Framing the Research Question  Hall et al. (2005) argued that background experiences, associated with disciplinary education and training, sensitize the researcher to form guidelines and reference points to formulate questions and concepts. While the purpose of a classical grounded theory study is to discover the main concern of the participants and how they continue to process the main concern (Glaser, 1978), in Chapter 2, I conducted a limited search of the literature to frame an overall research question: “How do caregivers of children with FASD manage their children’s schooling?” While the question acknowledges the personal agency of caregivers, and thereby accounts for using symbolic interactionism as my guiding theory, I framed it to encompass my openness to the participants’ problems and how they worked to resolve those problems (Giske & Artinian, 2007). With regard to the use of the term “manage,” Hall (1998) argued that such a term, compared to terms such as “cope,” could help the researcher avoid “ascribing concept labels that may not be grounded in data” (p. 63). I also trusted in Glaser’s (1978) notion that, should “manage” not be relevant for phrasing my overarching research question, the “pre-idea” (p. 44) would soon be corrected by the constant comparisons and the emergence of concepts. After all, as Glaser (1978) stated, “social organization of life is always in the process of  53  resolving relevant [emphasis added] problems for the participants in the action scene” (p. 45). I entered the research situation with an assumption or “pre-idea” that contextual factors (e.g., educational policies) might affect how caregivers try to resolve their main concerns. In departing from Glaser’s (1992) stance, that the focus for the research will emerge “out of open coding, collection by theoretical sampling, and analyzing by constant comparison” (p. 25), my assumptions led to the incorporation of questions that acknowledged the possible effects of contextual factors on the caregivers’ management of their children’s schooling. 3.3.2  The Strategy of Inquiry: Grounded Theory  Grounded theory is both a general method and a product. Grounded theory, as a method, was developed by the American sociologists, Anselm Strauss and Barney Glaser (Glaser & Strauss, 1967), and further explicated by Strauss and Juliet Corbin (Strauss & Corbin, 1990) and Glaser (1978, 1992, 1998). Glaser (1998) defined grounded theory as the systematic generation of theory from data acquired by a rigourous research method. The grounded theory product is a set of conceptual hypotheses, or probability statements, about the relationships between concepts, which is intended to generate a theory that accounts for a pattern of behaviour through which participants attempt to deal with their main concerns (Glaser, 1978). The main features of the grounded theory method – theoretically sampling, using constant comparative analysis, coding and categorizing, writing memos, and generating theory – occur simultaneously throughout the research project (Glaser & Strauss, 1967; Glaser, 1978). While Glaser (2005) contested this view, grounded theory is understood by  54  most authors (e.g., Annells, 1996; Kools, McCarthy, Durham, & Robrecht, 1995; Suddaby, 2006) as deriving its theoretical underpinnings from pragmatism and early symbolic interactionist thought. Grounded theory has been complicated by points of departure between Glaser and Strauss. At the centre of the Glaser-Strauss debate (Glaser, 1992), is the data analysis process. Glaser (1992) accused Strauss of creating an “almost new method… producing forced, full conceptual description” (p. 5). Criticisms in the literature, in response to Strauss and Corbin’s (1990) explication of grounded theory, include the suggestion that the version is “rather programmatic and over formulaic” (Melia, 1996, p. 370). In addition to Glaser’s departure from Strauss and Corbin, in framing the research question, Melia (1996) pointed out that Glaser’s objections also revolve around the initial coding process and because the researcher tries to verify the fit within and between categories throughout the process, the verificational nature of their model. With regard to the initial coding process, Melia juxtaposed the approaches of Strauss and Corbin and Glaser to illustrate this point of departure. According to Strauss and Corbin (1990): Conceptualizing our data becomes the first step in analysis. By breaking down and conceptualizing we mean taking apart an observation, a sentence, a paragraph and giving each discrete incident, idea or event, a name, something that stands for …a phenomenon (p. 63). Glaser (1992), on the other hand, stated that: By breaking down and conceptualizing the data we do not mean taking apart a single observation, sentence, paragraph, and giving each discrete incident, idea, or event a  55  conceptual name, which indicates something that stands for or represents a phenomenon…It would end up in an over-conceptualization of a single incident (p. 40). Glaser (1992), instead, wanted the researcher to: look for patterns so that a pattern of many similar incidents can be given a conceptual name as a category, and dissimilar incidents can be given a name as a property of a category and the compared incidents can be seen as interchangeable incidents for the same concept (p. 40). In terms of the role of verification in grounded theory, Strauss and Corbin (1994) supported the view that grounded theory research deals with verification and discovery. Annells (1996); however, pointed out that Strauss and Corbin do not use the term “verified” in the positivist or postpositivist sense, but rather, referred to the steps within the constant comparison that offer a verification throughout the research project. In my study, I followed Glaser’s approach to data analysis (Glaser & Strauss, 1967; Glaser, 1978, 1992, 1998). I rejected Strauss and Corbin’s (1990, 1998) interactionist coding paradigm because it provided a more structured approach to data collection and analysis from its emphasis on the context, the conditions which give rise to the central phenomenon, the action/interaction strategies by which it is managed, and the consequences of those strategies. I was swayed by Glaser’s (1992) argument that using a structured model to inform the analysis of the research data may result in forcing the data. Glaser’s approach appealed to me because I was most interested in capturing the caregivers’ perceptions, instead of  56  preconceived ideas. On the other hand, I disagreed with Glaser’s (1978, 1992) argument that the central conceptual category would emerge from the constant comparisons that drive the coding of data. In using symbolic interactionism as a theoretical framework, the central or core conceptual category, rather than emerging from the comparisons, is developed, and the data and categories are co-constructed. 3.3.3  Leveraging Symbolic Interactionism with Grounded Theory  Grounded theory was the method of choice because it fits the aims of the study; namely, to produce an explanatory product. Furthermore, authors such as Hall (1998) and Mordoch (2005) proposed that a grounded theory approach is well suited to offset criticisms of symbolic interactionism, such as inadequate conceptual and theoretical development, astructural bias, lack of methodological rigour, and an idealistic vision of reality. Because “grounded theory requires complete development of concepts included in a substantive theory and encourages linkages of concepts to their related propositions within the theoretical coding procedure” (Mordoch, 2005, p. 84) I regarded the method as offsetting criticism of lack of conceptual and theoretical development in symbolic interactionism. The main features of grounded theory include theoretical sampling, theoretical memos, and the method of constant comparison, all of which occur simultaneously throughout the research process (Glaser, 1978; Glaser & Strauss, 1967). Tan, Wang, and Zhu (2008) argued that the rigourous constant comparison technique from grounded theory offers a much-needed analytical edge to sharpen theoretical insights from using symbolic interactionism. Hall (1998) proposed that these procedures could also address the issues of emergent bias and lack of methodological rigour, two criticisms of symbolic interactionism.  57  The emergent nature of classical grounded theory (Glaser, 1992) permits macro system issues and power dynamics to earn their way in the process of theoretical sampling, open coding, and constant comparisons, if relevant to participants. The grounded theory method has its own internal criteria for judging the rigour of the grounded theory product; therefore, it offsets the criticism that symbolic interactionism lacks methodological rigour. Finally, Hall (1998) pointed out that the attention of grounded theory to structural features, such as resources and power, could address the criticism of symbolic interactionism’s idealistic vision of social reality. Grounded theory has attracted criticism which includes a lack of clear explication of epistemological assumptions and reference to and use of existing theoretical frameworks (McCann & Clark, 2003). A fundamental criticism of Glaser’s approach to grounded theory is his tendency to treat theory as though it dwells in the data, ready to emerge. My use of symbolic interactionism as a guiding theoretical perspective addresses that criticism; my study is both planned and emergent (Bruce, 2007). My leveraging of grounded theory with symbolic interactionism also creates tensions. Grounded theory has positivist underpinnings. Glaserian grounded theory, with its particular focus on discovery, has traditionally been aligned with objectivism, which reflects the view that things exist as meaningful entities independent of consciousness and experience and have truth and meaning residing in them as objects (Crotty, 1998). Glaser’s approach presupposes the neutrality of the researcher and the existence of objective meaning within the data. Using Glaser’s lens treats interview and observation data as reproductions of the participants’ realities, without paying attention to the effects of interactions between researchers and participants (Hall & Callery, 2001). He has not acknowledged the social  58  construction of the interview. Attempts by Straus and Corbin (1994) and especially Charmaz (1995), to reposition grounded theory, thereby potentially addressing these tensions, have led to criticism (e.g., Mills, Bonner, & Francis, 2006) of grounded theory as being “ontologically ambivalent.” Tan and Hall (2007) proposed that these tensions can be addressed by expanding the criteria for rigour to include reflexivity and relationality, in addition to applying criteria for rigour that is typically associated with grounded theory. The criteria for rigour will be described in the next section, and further explored in relation to the data presented in Chapter 4. 3.3.4  Rigour  To navigate considerations of rigour when using symbolic interactionism, I started from the positions of Rolfe (2006) and Tan and Hall (2007). These authors argue that the criteria for rigour have to be relevant for a particular study, consistent with the guiding theory and the epistemological foundations of the strategy of inquiry. In this section, I introduce the criteria for rigour that are used in the study. A generic form of rigour in qualitative research that I consider is auditability, which is defined as making steps in the research process clear so that another researcher can follow the audit trail or decisions made (Lincoln & Guba, 1985; Sandelowski, 1986). I regard going beyond a general set of criteria for rigour as important to attend to the rigour of the grounded theory product. I have relied on the internal criteria for rigour explicated by Glaser (1978, 1992), including fit, work, relevance, modifiability, parsimony, and scope. I define these terms briefly. Glaser defined fit as the relationship of the core category to the salient social problem and its ability to account for most of the variation in  59  behaviour used to address the problem. If a grounded theory works it explains the major variations in behaviour that the subject tries to address in a meaningful way. If a grounded theory fits and works it has achieved relevance. Furthermore, a core category that fits, is relevant, and works can be modified when new data present variations in properties and categories. Accounting for as much variation in the data with as few concepts as possible maximizes parsimony and scope (Glaser, 1978, 1992). The criteria I have outlined reflect only grounded theory’s positivistic roots, which presuppose the neutrality of the researcher (Crotty, 1998). They do not acknowledge the researcher’s contribution to the social construction of knowledge or issues around power and trust (Hall & Callery, 2001). Thus, I support the view that they are inconsistent with the epistemological underpinnings of symbolic interactionism. Because grounded theory research requires interpersonal interaction (Hutchinson, 1993) (in this study, interaction between the researcher and caregivers), the study process should account for the influence of the researcher on the construction of data. In an effort to be more consistent with the epistemological underpinnings of symbolic interactionism, I have incorporated Hall and Callery’s (2001) proposal to include two additional criteria for rigour in grounded theory: reflexivity and relationality. Hall and Callery (2001) defined reflexivity as “attending to the effects of researcherparticipant interactions on the construction of data” and relationality as “attending to power and trust relationships between researchers and participants” (p. 257). To ensure that the findings are grounded in data, as per the method of constant comparison, rather than being derived from my own preconceived framework, I intend to be reflexive throughout the research process (McGhee, Marland, & Atkinson, 2007). In addition, because power  60  differences have the potential to distort truth claims (Carspecken, 1996), I recognize that attending to relationality is important. Attempts to transform participants into “coresearchers,” do not always acknowledge power relationships that exist between researchers and participants because the researcher is privy to knowledge that the participant does not have (Haverkamp, 2005). By incorporating the criteria of reflexivity and relationality in my study, I make the process of creating data within a grounded theory more transparent. As Tan and Hall (2007) argued, I ensure explicit consideration not only of the procedures by which the data are collected and analyzed but also of the impact of researcher-subject relationships during the course of the investigation. I view these criteria as addressing the influence of investigatorparticipant interactions on the construction of data. In other words, they account for the social construction of knowledge and co-construction of meaning (Hall & Callery, 2001). Although theoretical sensitivity appears to be “the central underpinning to claims about reflexivity” (Hall, 1998), I suggest theoretical sensitivity deserves special attention because of its importance in discussions of the rigour of grounded theory studies. To conceptualize and formulate theory as it emerges from data, the researcher needs to be theoretically sensitive (Glaser & Strauss, 1967). Theoretical sensitivity has been described by Glaser (1978) as “the researcher’s knowledge, understanding, and skill, which fosters his generation of categories and properties and increases his ability to relate them into hypotheses and to integrate the hypotheses according to emergent theoretical codes” (p. 27). By developing theoretical sensitivity, the researcher would recognize significant data and formulate theory that is conceptually dense. While Glaser (1978) argued that theoretical sensitivity is enhanced when the researcher enters the setting with very few predetermined  61  ideas, I have entered the research setting with some experience interacting with families of children with FASD, and through educational experiences, familiarity with the literature. In Chapter 4, I describe how I dealt with my previous experiences. 3.4  Summary Methodological and epistemological issues in qualitative research are difficult to  resolve. In this chapter, I have presented the key tenets of symbolic interactionism. I have examined the strengths and limitations of the guiding theory. To be reflexive about filters that may come into play during data collection and interpretation (Tan & Hall, 2007), I have attempted to resolve some of the methodological issues presented by using symbolic interactionism as a theoretical lens and classical grounded theory as the strategy of inquiry. I discussed how leveraging grounded theory and symbolic interactionism can address some of the criticisms against symbolic interactionism. While following Glaser’s approach to analysis, I discussed points of departure in framing the research questions and in applying the criteria for rigour. The next chapter describes the research method used for the study, which attends to the methodological issues that have been raised.  62  Chapter 4: Method 4.1  Introduction In this chapter, I describe my study design and provide definitions of the research  terms. I list the research questions and discuss ethical considerations, data collection procedures, theoretical sampling, data analysis and theoretical memos, and my approaches to rigour. Because of the interplay between data collection and analysis in grounded theory, the stages in grounded theory research overlap. The overlap is reflected in the discussion of the features of grounded theory. 4.2  The Study Design The purpose of my study was to explain how primary caregivers of elementary  school-aged children with FASD in British Columbia manage their children’s schooling. My specific aims were to explain: how caregivers of elementary school-aged children act to manage their children’s schooling; contextual factors that affect caregivers’ efforts to manage their children’s schooling; and how contextual factors affect primary caregivers’ efforts to manage their children’s schooling. The nature of my purpose and aims guided me to select a qualitative research design. Specifically, I chose grounded theory as a strategy of inquiry because my intent was to generate a substantive mid-range theory grounded in data from caregivers of school-aged children with FASD. I aimed for a theory to conceptualize and explain how caregivers continuously processed their main concerns. I used the main features of the grounded theory strategy throughout the research process: concurrent data collection and analysis; theoretical sampling; constant comparative  63  analysis; coding and categorizing; memo writing; and generating theory. I generated my data through interviews, participant observation, and document analysis. After beginning with purposive sampling, I used theoretical sampling to guide the data collection. I used memos to elaborate on my ideas about codes and their relationships. I maintained a personal reflexive journal throughout the research process and kept account of my biases and assumptions. I developed a core category that accounted for most of the variation in the data and explained how participants continually processed their main concerns. 4.3  Definition of Terms  Primary Caregivers Primary caregivers are defined as being responsible for the day-to-day care of their children. They may be biological mothers, biological fathers, adoptive mothers, adoptive fathers, foster mothers, foster fathers, biological grandmothers, biological grandfathers, or other long-term adult guardians of children with FASD. Elementary School-Aged Children Elementary school-aged children are defined as between 6 to 12 years of age, as distinguished from preschool children (birth to 5 years of age) and adolescent children (13 to 18 years of age). Key Workers Key Workers are “facilitators” whose mandate includes assisting caregivers and service providers of children with FASD to understand children’s needs and develop supportive environmental accommodations. They work with caregivers of children with  64  confirmed or suspected FASD in a variety of ways, such as, providing emotional and practical support to families (Province of British Columbia, 2007). 4.4  Research Questions The overarching research question that guided my study was: How do primary  caregivers of elementary school-aged children with FASD manage their children’s schooling? I framed the overarching question in a sufficiently open way to use data to generate further questions during the research process. Three sub-questions guided my study: 1) How do primary caregivers of elementary school-aged children with FASD act as they manage their children’s schooling? 2) What contextual factors affect primary caregivers’ efforts to manage their elementary school-aged children’s schooling? 3) How do contextual factors affect primary caregivers’ efforts to manage their children’s schooling? The overarching question and sub-questions reflected the symbolic interactionist perspective (Blumer, 1969; Mead, 1934; Perinbanayagam, 1985). 4.5  Ethical Considerations The proposed study was reviewed and approved by the University of British  Columbia Behavioural Research Ethics Board (BREB) for Research Involving Human Subjects. Initial approval was received December 18, 2008. Support was also obtained from a child development centre, mental health organization, and school district. As part of the recruitment process, I developed an advertisement (Appendix A), information letters for  65  potential participants (Appendix B), and consent forms (Appendix C). I submitted these to key workers and other contact persons at various agencies. Although ethical considerations are introduced in this section I incorporate ethical considerations where relevant throughout the chapter. For example, addressing the power imbalance between me as the researcher and my participants is not only an important ethical consideration, but is also important to my discussions of rigour, data collection, and data analysis. I begin by addressing the issues around informed consent. Then I discuss the ways in which I attempted to address the power imbalance between me and my participants, the prevention of dual relationships, and the remuneration of research participants. A dual relationship exists when a professional engages in more than one relationship with a client (Kagle & Giebelhausen, 1994); for example, when an individual acts as both researcher and clinician. 4.5.1  Informed Consent  Sixteen potential participants contacted me by telephone and three potential participants contacted me by e-mail. Most potential participants had already received a copy of the information letter (Appendix B) through their key workers by the time they contacted me. I mailed a copy of the information letter to potential participants who responded to advertisements on the website or received information from friends in advance of the first meeting with me. When potential participants responded, I filled out an intake form to ensure that these individuals met the initial inclusion criteria (Appendix D). Seventeen potential participants who contacted me met the criteria and were selected for participation in the study. Two potential participants were not included because they lived in the United States.  66  Participants had, on average, 7 to 10 days to review the information letter and the informed consent letter prior to the first interview. I contacted participants one day before the first meeting to confirm their interest in participating in the study. No participants withdrew after the initial telephone contact or after they reviewed the information letter. During the initial and follow-up telephone conversations, I gave participants opportunities to ask clarifying questions. At the first meeting, I discussed the nature of the study, including issues around confidentiality and limits to confidentiality. I showed participants copies of the interview guide (Appendix E) and observation guide (Appendix F). I also emphasized the likelihood of adding new questions as the interviews progressed. Despite the steps described above, the process of informed consent is not straightforward in qualitative research. For example, Haverkamp (2005) pointed out that the fluid nature of qualitative research prohibits identification of all factors that might influence a participant’s decision to consent. She encouraged researchers to view informed consent as a mutually negotiated process. The following example demonstrates the ongoing nature of the informed consent process: A grandmother of a school-aged child shared painful memories and details of her adoptive adult son’s spiral into alcoholism, as well as issues around abuse – topics that she might not have planned to address when consenting to our interview. I offered to stop recording the interview at that point; however, she declined. After the interview, we discussed the nature of the information she had shared and decided to review the transcript at a second meeting to make sure that she felt comfortable about including the information in the study. On another occasion, when an interviewee ventured into an unexpected and  67  potentially upsetting topic, I switched off the recorder to renegotiate the participant’s consent. Confidentiality and anonymity can never be absolutely guaranteed in qualitative research (van den Hoonard, 2003). Haverkamp (2005) pointed out that the use of extensive quotations to highlight experiences may make it difficult to protect a participant’s identity. I tried to protect the identities of participants and third parties mentioned in quotations by eliminating comments that could identify people. Because the emphasis of a grounded theory study is on behavioural patterns, rather than personal patterns (Glaser, 1978), I informed participants that the final write- up would not include any identifying personal information. I assured participants that all of the information (audio-tapes, CDs, memory sticks, and hard copies) would be stored in a locked filing cabinet in my office while the study was being conducted, and that all electronic files were password-protected. I also informed the participants that a professional transcriber would transcribe the interviews and, prior to undertaking transcription, she would sign a confidentiality statement (Appendix G). No identifying information (e.g., first or last names) appeared on the transcripts; instead, code numbers were used. I stored the code numbers and names in separate locations under lock and key. 4.5.2  Addressing the Power Imbalance  A power imbalance exists between researchers and participants because the researcher sets the research agenda (Gubrium & Koro-Ljungberg, 2005; Kvale, 1996). I tried to address this imbalance through purposeful actions during the research process. I started interviews with a broad and general question: “How do you manage your child’s schooling?”  68  I also attended to the power imbalance issue by offering participants choices for where, when, and how long to meet and respecting the timelines suggested for interviews. Following transcription, I gave participants an opportunity to respond to the transcripts and categories that I developed. I offered follow-up meetings with all participants as soon as I received the transcripts to provide opportunities for participants to read through their transcripts and raise any questions or concerns. I also attended to any needs for additional support for caregivers and the necessity of recording second interviews. Fourteen participants were interested in meeting to review their transcripts; they took time to read through their transcripts in their entirety and comment on the typed dialogue. One participant asked to keep a copy of the transcript for her own records. Two participants made changes to their transcripts; one change pertained to the protection of confidentiality, and the other change was to emphasize that the participant’s son was adopted. Because of the potential emotional distress arising from talking about FASD and the potential stigma associated with requesting support, I provided all participants with a contact list for potential supports prior to the first interview. The list included contact information for key workers, parent support groups, and support agencies in each community in the Lower Mainland. Following a request, I provided one participant with an additional opportunity to connect with a support group outside of the area where she lived. Because understanding the meanings that participants made of their experiences depends on rapport-building, among other factors (Morrow, 2005), I decided not to record some of the second interviews, instead, I made detailed notes while interviewing. For example, during an interview in a coffee shop the recorder attracted some attention from the other patrons, so I took notes. When a partner’s career elicited a lengthy conversation about  69  the confidential storage of recorded information from the first interview I decided to take notes at the second meeting. When detecting any hesitation about tape-recording an interview I used note-taking. Removing a symbol of the power differential (the recorder) between me and the participant decreased power differentials and facilitated rapport. Given that concepts and patterns, not precise descriptive accounts, are important in a grounded theory study, I decided that the benefits from continued rapport-building outweighed any shortcomings from omitting the digital recordings. Glaser (1998) discouraged the use of tape-recording altogether. 4.5.3  The Prevention of Dual Relationships  I regarded prevention of dual relationships as another important ethical consideration. My role as an intern school psychologist in a school district introduced the potential for dual relationships: having a professional relationship with a caregiver in my capacity as a school psychologist and simultaneously developing a relationship in my capacity as a researcher. School psychologists make decisions that affect students’ educational careers and potentially their careers after school. The power differential between psychologists and families can continue until the student graduates or until the family leaves a particular school district. School district clients, who are aware of power differentials between a psychologist and themselves and the implications for their children, might consent to the study against their will. Bourdeau (2000) argued that professional relationships characterized by a high power differential, long duration, and indefinite termination, can increase potential for harm to clients. To prevent any potential for dual relationships, I did not recruit participants from  70  the district in which I was working. Thus, I refused information from a key worker in that district about potential clients. 4.5.4  Remuneration of Research Participants  A final ethical issue I discuss in this section revolves around the remuneration of research participants. I believed that remunerating participants for taking time out of their lives was important. I considered what would be an appropriate amount for compensating participants for their time while providing compensation at a level to avoid being coercive (Ensign, 2003). At the first meeting, I paid participants $25.00 for their participation in the research project. Two participants declined payment. No participants received remuneration for follow-up interviews. I determined need for childcare fees at the first telephone contact. Because most interviews took place during school hours only six participants requested fees to cover the cost of childcare for younger children at home. The average cost of childcare fees was approximately $20.00. 4.6  Data Collection Procedures In the following sub-sections, I describe the data collection procedures, including  sampling techniques and data collection strategies. The data collection strategies included interviews, participant observation, and document review. 4.6.1  Sampling Techniques  I used purposeful sampling to access the caregivers of school-aged children with FASD who could talk about managing their children’s schooling. Glaser (1978) indicated that sampling variation should not be predicated on demographic variables; rather, any  71  indicators of variation should earn their way into the data based on theory development. Nevertheless, I was also interested in including biological caregivers in my sample because they have been under-represented in qualitative studies. The study took place in the Lower Mainland of British Columbia, which was selected because it was important for me to interview participants face-to-face near their areas of residence or in areas that were familiar to them. For practical reasons (e.g., time and cost), I interviewed only caregivers who lived within a three-hour driving distance from me. In providing participants opportunities to choose locations for interviewing where they would feel most comfortable, I intended to democratize the research process; however, I also recognize the underlying power dynamic inherent in the very act of “making it as comfortable as possible for the participant.” After all, during the data collection stage, the researcher depends on the participant, who owns the knowledge and can decide whether or not to disclose it (Karnieli-Miller, Strier, & Pessach, 2009). I recruited the caregivers using a number of techniques, including placing an advertisement on the website of a provincial online information resource on FASD, accessing key workers in the Lower Mainland, and snowball sampling. Snowball sampling, or asking existing participants to identify other participants for possible inclusion in the study, is a particularly advantageous sampling method in research studies that involve sensitive issues (Faugier & Sargeant, 1997). I contacted key workers via e-mail, telephone, and appointment. I asked the key workers to post the advertisement at their offices and to distribute information letters to interested clients. Six participants responded, based on the information they received from their key workers or other professionals working with them. Eight participants responded  72  based on information from other participants or through word of mouth and three participants responded to the advertisement. Because I initiated data collection by interviewing participants who had experience in the general problem area of managing their children’s schooling, and who were able and willing to provide data about this social process (Cutcliffe, 2000; Morse, 1991) my initial sampling process included purposive and snowball techniques. As the data collection proceeded and categories and their properties began to emerge, I superseded purposive sampling with theoretical sampling (Glaser, 1978). I began theoretical sampling after the categories and properties of categories were adequately developed, to guide my decisions about where to sample next and collect data. Because of the importance of this feature of grounded theory, I describe it in more detail in Section 4.7 of this chapter. 4.6.2  Data Collection Strategies  Data collection and analysis occurred simultaneously. Data in this study were collected through interviews, participant observation, and document analysis. 4.6.2.1 Interviews I completed 30 in-depth interviews with the caregiver participants between February 2009 and November 2009. Of these, 17 were first interviews. I selected twelve participants for second interviews and one participant for a third interview, based on theoretical sampling. My second and third interviews were guided by tentative hypotheses. I conducted them to explore recurring patterns in the data and to flesh out some of the categories important to the emerging theory. Examples included theoretically sampling caregivers who were not single  73  parents; participants who were living outside a setting that had been portrayed over the longterm as a community of people living in poverty and experiencing marginalization, and later, participants who lived inside this community; participants whose children attended special schools or programs; participants who did not attend support groups; participants who were not biological parents; and participants who were not connected to key workers. I describe how I determined the need for second interviews in Section 4.7. First interviews lasted for approximately 70 minutes, while second interviews ranged from 30 to 45 minutes. I conducted second interviews approximately two months after the first interviews. In one case, I scheduled the second interview four months after the first interview. I interviewed most participants in their own homes, although some participants were interviewed in private spaces at community centres or coffee-shops. Using both a cassette and a digital recorder, I audio-recorded initial interviews. Interviews were typed and transcribed verbatim by a professional transcriber and typically returned within two to three days. After I received the transcribed interview, I read through the transcript in its entirety while listening to the audio-recording. I corrected any inconsistencies between the recording and the transcript. Interviews were typed in the left two-thirds of the page, and each line was numbered in the far left margin. The right third of the page was left blank for my coding. Although I developed a semi-structured interview guide (Appendix E), asking questions from the interview guide proved to be unnecessary for most of the interviews, because the caregivers often addressed question topics spontaneously during the interview. A general question was asked to open up the conversation. The question did not change much over the course of the research process; for example, I would ask, “Tell me how you manage  74  your child’s schooling.” I encouraged elaboration during the interviews where necessary, although I was careful to avoid imposing any of the categories I was constructing through my questioning. Follow-up questions were often related to process rather than content. I questioned for meaning; for example, “You started off by saying, ‘keeping things on track.’ I am curious to know what that means?” or, “If you say you brought that up (to the teacher), what would that look like?” Over time, and guided by my memos, new questions emerged that I used to elaborate my categories to further theory development. For example, questions that followed the first few interviews included, “Some parents have told me they feel quite isolated in managing the schooling. Some parents have described connecting to a support group. I am curious to know what you do.” I also made statements that helped me to elicit responses that aided in comparing and contrasting incidents. For example, I asked, “It is interesting that you’re saying this because I’ve talked to some parents who said being on standby and being there 24/7 means you say no to a promotion or it means that you cannot work at all” or, “Some parents tell me you can’t go into the school and tell them what’s on your mind. You kind of have to be a bit strategic… you have to mind your ‘p’s and ‘q’s. Do you have a sense of that?” Later in the process, I used visual representations of the developing theory during the interviews. The visual representations illustrated the relationships between categories; participants were invited to provide feedback on them, which was incorporated into the developing theory. That process helped me to further develop the theory and relationships between the core category and other categories. Appendix H shows an example of a visual representation that was presented to caregivers. On occasion, after re-reading the interviews,  75  I noticed places where my own responses or biases may have affected the participant’s response. I noted these occurrences in a personal reflexive journal, and then checked the participants’ responses in these sections against the data gathered at different points in the process. Constant comparison helped me to develop hypotheses, which were grounded in the data, rather than developed from my own assumptions. 4.6.2.2 Participant Observation I undertook 25 hours of participant observation in participants’ homes and other interview contexts. I documented participant observation data as field notes in a notebook. I typed up field notes shortly after I returned home from an interview (Appendix I). The data provided a record of what I had observed, along with notes on my interactions with the participants. Notes were also made before the interviews, for example, while I was waiting for a participant, during the interview, and immediately following an interview. I used the participant observation guide (Appendix F) to guide my observations. My field notes included references to interactions between me and participants, interactions between family members, and participants’ physical gestures, and tone of voice. I also made detailed notes of the location of the interview, room organization, and home environment. The field notes allowed me to follow up in interviews to determine what symbolic meanings non-verbal comments (e.g., gestures) had for participants. Reviewing the notes together with the audio-recordings helped me to start the process of writing memos and plan for the next interview. I analyzed the field notes similarly to the data from the interviews. The notes also helped me frame questions for future interviews. For example, I visited a family in a remote area of the study recruitment area where I encountered several  76  geographical barriers before reaching their home. I noted the features of the location in my field notes and commented about how they might contribute to a sense of isolation for the family. At that point, I was interested in exploring the category, “isolation,” that I developed from previous interviews; I could use my observations to stimulate conversation about the topic. For example, in addition to my observations, the following excerpt was taken from the interview: I didn’t… and then when we had… we have a very steep hill. Bad winter days we’d have… you know… snow days… and we’d work at home in school… in spelling and math and reading and whatnot. And I was realizing that they are so far behind they don’t understand the simplest things… and I’m still a little… you know… I’ve been a little afraid to speak up… like who am I when they’re the professionals? (11.1, lines 65-75). Participant observation also helped me to find points of correspondence between what people said and what they did. Noting an advertisement on the wall for food bank locations and hours of operation when I interviewed a participant sensitized/alerted me to the information contained in the following interview excerpt: And I talked to her [the principal], and man, I never had no problem with her. So that’s why I’m looking forward to this year. That’s why the first day of school there I got to debate if I’m going to go to the Food Bank [or go to see the principal] (14.1, lines 612-615).  77  Observation and interview data helped me to write memos about the influence of poverty on actively managing schooling. Later, I went back to my notes and interview data when I developed the category, “keeping up appearances,” and the conditions that influence the ease or difficulty for caregivers in keeping up appearances. The early memo served as a small building block that contributed towards my development of the core category and the theory. In another case, when the participant commented on how time-consuming it was to manage life with a child with FASD, I observed on her refrigerator a multitude of notes for medical appointments and assessment dates. On another occasion, I noticed a caregiver at a conference who had set up a booth with information about an FAS helpline that she had started, several months after she said the following in an interview: And that’s, you’re asking about [visiting the MLA] …again, that’s something that I went there to propose or to ask her about how I can do this. I want a 1-800 info FAS line, because I am sick and tired of hitting brick walls (5.1., lines 494-497). In the preceding case, I followed up on an observation that I made before the interview began when I asked the participant about a note lying on her kitchen table that had the name of her MLA on it. My observations before and after the interview contributed to the memo, “advocating and educating.” Participant observation also allowed me to access meanings that were communicated through non-verbal behaviour, as illustrated by the following excerpt from a second interview:  78  And my doctor… I go to see my doctor because at this point… all the guilt… all the guilt comes back. Like I did this to her (emphasize, very emotional, crying, resting head on arms). And I can’t even help her (5.2, lines 143-145). In this case, the data from the participant observation was labeled, “overcome with guilt,” and it contributed to an early category, “hitting the wall.” I used the early code, “hitting the wall” to label incidents where actively managing was relinquished momentarily or for a longer time. Participant observation also enabled me to note points of resistance between what a caregiver was prepared to say and their actions. One caregiver expressed confusion about how the disorder came to be, even though she had mentioned being a “social drinker.” She generally preferred to focus on her child’s additional diagnoses during most of the interview, although I observed that she had many books and other sources of information about FASD in her home. Early in the interview, I commented about the FASD resources; as our rapport continued to build during the interview, the participant became more comfortable about raising the topic. The initial tension, between what was observed and what the participant chose to talk about during the interview, contributed to an early memo, “saving face,” which was eventually renamed, “keeping up appearances.” Following my second meeting with the caregiver who wanted me to emphasize that her son was adopted, I reflected on her request in my observation notes after the meeting. The caregiver felt that it was important to emphasize that her son’s brain damage due to prenatal alcohol exposure was not caused by her. I later compared my notes with other data that eventually also contributed to the category, “keeping up appearances.”  79  Many of the parents had special treats available during my visits and I made notes about their presentation of food. Having been sensitized by my observations in the homes of the participants, I questioned a later participant about the meaning she attached to food and her efforts in presenting food; she commented that it made her feel like a good parent. Later, I returned to these notes and integrated them as part of my development of the category, “keeping up appearances.” After a visit to one of the adoptive parents, I made a note about her refusal to accept the money for the interview. A second participant also refused payment for the interview. The adoptive parent commented that it did not feel like the “right thing,” to discuss her child and accept money in return. Later, these field notes contributed to my development of the category, “keeping up appearances,” in which I compared and contrasted incidents from the data about avoiding being viewed as a “bad” parent. On another occasion, while interviewing a biological mother, she referred to a time in her child’s life when the child stayed with a “foster parent,” and then she immediately corrected herself by saying, “I mean, god parent.” This correction also contributed to my memo, “saving face.” At a second interview, in the context of growing trust, she revealed that her child’s stay with a foster family made her feel like a bad parent, which compounded the guilt she felt about her child’s exposure to alcohol. These revelations may not have been revealed to others. Along these lines, Glaser (1965) remarked that, because research studies into social problems “raise problems of secrecy, sensitivity, taboo topics, stigma… and because people in these situations are usually adept at covering the facts when necessary” (p. 436), a combination of data collection methods (including interviews, observation, and document analysis) is needed.  80  4.6.2.3 Document Analysis I received documents from participants, such as e-mails, newsletter articles, letters to the principal and various teachers, letters to the newspaper, assessment reports, and video material, and incorporated them as data. I coded the data from document analysis in the same fashion as the interviews and observations (Glaser & Strauss, 1967). After analyzing numerous letters sent to the principal, along with the interview data, I developed the categories, “pitbulling” and “cultivating connections.” By analyzing the hand-written letters and e-mail correspondence between school principals and caregivers, I could better identify the conditions when pitbulling and cultivating connections would be more difficult. Glaser and Strauss (1967) pointed out that different “slices of data,” (p. 65) provide the researcher with different vantage points from which to develop the properties of categories. Information from policy documents (e.g., educational policies) and information from documents passed on by professionals who were working with families with FASD were integrated after I had identified the core category (Chapter 6). 4.7  Theoretical Sampling Glaser and Strauss (1967) describe theoretical sampling as follows: Theoretical sampling is the process of data collection for generating theory whereby the analyst jointly collects, codes, and analyzes his data and decides what data to collect next and where to find them, in order to develop his theory as it emerges (p. 45).  81  Theoretical sampling and the constant comparison method are used jointly and continuously from the outset of data collection until each code is saturated, elaborated, and integrated into the emerging theory (Glaser & Strauss, 1967). The purpose of the constant comparative method is to generate theory systematically by using explicit procedures for coding and analysis. Glaser and Strauss (1967) stated the defining rule for constant comparison: “While coding an incident for a category, compare it with the previous incidents in the same and different groups coded in the same category” (p. 106). I entered the first set of interviews with questions based on my perspective of the general problem area of how caregivers of children with FASD manage their children’s schooling. I began the process of theoretical sampling after I developed some initial categories and their properties. Guided by the data, and the initial categories and their properties, I made comparisons between kinds of information to generate qualifying conditions. The process of conceptual elaboration helped me to form tentative hypotheses, which further guided my data collection. For example, while I did not assume students’ schools were important conditions at the outset, early responses from caregivers indicated that their actions to manage varied depending on the kind of program their children attended. Notwithstanding the willingness of a key worker to suggest caregivers who lived in the district where the first participants were interviewed, I decided to select interested participants from diverse districts next. In this case, theoretical sampling helped me to develop the category, “being on stand-by,” and to explore conditions (e.g., knowledge of FASD) that influenced the caregivers’ actions and the consequences that flowed from their actions.  82  Later, I sought to interview caregivers with children who were attending programs specifically for children with FAS. After applying for ethical clearance from the University of British Columbia and research approval from the specific school district, I sent information to key people in the school district that was hosting the special program. Because the participants were not forthcoming through contacts in the school district and sampling of the caregivers was important to the theory development, I tried to access participants from the programs via key workers and participants. I also conducted second interviews with participants and a third interview with one participant to develop my tentative hypotheses. I interviewed one participant three times because her child’s school placement had changed over the course of the research project. Thus, her child had moved from attending a regular program to a program for children with social development issues and finally a program for children with FAS. Theoretical sampling, in this case, helped me to develop the category, “islands of success,” which was later renamed, “islands of calm.” Another example of how the tentative hypotheses guided my theoretical sampling revolved around the indicator of single parent status. Most of the participants I initially interviewed were single parents. The data I obtained from the interviews suggested that the caregivers needed to be at the school “24/7” to actively manage their children’s schooling, which affected the caregivers’ abilities to engage in paid employment. I wrote the following process memo following the fifth interview on April 9, 2009: The group of caregivers I have talked to, to date, were all single parents and none of them were working full-time. One might expect a category such as “being on standby” to be influenced by employment status. How are you on constant stand-by if you  83  need to work? How would that influence their behaviour? Also, is managing the schooling easier for caregivers when there are two parents? I could add usefully to the sample by identifying and talking to caregivers who are working and caregivers in relationships/married. I wanted to explore whether or not single parent status was an important indicator. I was interested in how being single versus being in a relationship influenced the dynamic interplay between what I coded at that point, “what caregivers want for themselves” and “what caregivers want for their children.” At that point, I specifically sampled for caregivers in relationships, again, holding back from sampling participants who were not in a relationship. As the analysis progressed, it became evident that single mothers were just as likely to “advocate” or “keep up appearances” as single fathers, or caregivers in relationships. Nonetheless, the single status made the full-time management of the children’s schooling, and being on stand-by, more difficult, especially for caregivers who were single and poor. As the data collection and analysis proceeded, an indicator that I recognized as conceptually important pertained to living in a setting that had been portrayed over the longterm as a community of people living in poverty and experiencing marginalization. I sampled more caregivers in that setting and also returned to interview some participants for a second time to explore how living in a close-knit community, which was the way the community was framed by the caregivers, influenced caregivers’ actions to resolve their main concerns. Another example of theoretical sampling revolved around the category, “staying connected.” I was interested in how being connected to a support group helped the caregivers manage “what they want for themselves” (or their “success as a parent”) and “what they want  84  for their child” (or the “success for child”). Because the first three caregivers I interviewed attended some form of support group I sampled specifically for caregivers who did not belong to a support group. Theoretical sampling, in this case, provided me with diverse conditions to further develop the category, “keeping up appearances.” To summarize, it is the comparison of differences and similarities in the data that facilitates the generation of categories, their properties, and their interrelations (Glaser & Strauss, 1967). While concurrent data collection and analysis are important features of grounded theory research, Jeon (2004) pointed out that contingencies of time and resources may require some adaptability on the part of the researcher. At times, referrals for the study came in quickly (at one point, two referrals per week). Given the sensitive nature of the topic being studied, I did not want to delay interviews until my analytic efforts pointed me to the groups or subgroups to which I would turn next to further my development of the theory. Interviewing some participants before memos were sufficiently developed to indicate where to sample next (theoretical sampling), might have led to some redundancy in interviewing and kept me from asking questions that could have facilitated my ability to develop more properties for some categories. 4.8  Data Analysis and Theoretical Memos Because my data analysis took place concurrently with the data collection I wrote  memos continually throughout the research process. The memos are “the theorizing write-up of ideas about codes and their relationships as they strike the analyst while coding” (Glaser, 1978, p. 83). I wrote both theoretical and process memos. My theoretical memos took the shape of text and visual models. Initially, the memos came from the constant comparisons of  85  indicator to indicator and indicators to concepts. Later, I generated memos by sorting and writing-up, as suggested by Glaser (1978). I also wrote process memos to make my research process clear. Process notes dealt with methodological issues; for example, I wrote notes indicating my next step in the data collection. I continued to write memos while reworking the first and second drafts of the chapter describing my theory. During reworking of my drafts, by revisiting earlier memos, constantly comparing within and across interviews, and using the process of “one-upping” with members of my research committee, I developed the core category, “intertwining to fit in.” The process of “one-upping” is described, by Glaser (1978), as “a collaborative theoretical effort to refine the level of the data as quickly as possible while carefully fracturing it” (p. 59). I analyzed the data line-by-line and wrote codes in the margins of the transcribed interviews, field notes, and documents. I considered using computer-aided qualitative data analysis software for its advantages (rapid data processing) and to manipulate the data without changing the original set (Jones, 2007) but I decided to code the data by hand. I believed hand coding increased my familiarity with the data and my facility with incorporating codes into memos. In deciding not to use software, I was swayed by Glaser’s (2005) argument that “going conceptual” (p. 39) would be stultified by computer technology. On a separate sheet, I tabulated the codes with their corresponding line numbers to keep track of the location of the codes in the transcript. I constantly interrupted the coding process to type memos. At times, when conceptual ideas emerged when I did not have access to a computer I wrote memos on paper and entered them in the computer later. I kept adding to the memos until I developed  86  the core category, which integrated the memos. Then, I sorted and wrote theoretical memos in the final steps of the grounded theory method. In the next subsection, I describe the constant comparative method of analysis, with reference to the different levels of coding that I used. To demonstrate the process of developing codes, I refer to memoing in the sections below. 4.8.1  Constant Comparison Method of Analysis  I used the method of constant comparison jointly with theoretical sampling. My recursive data collection and analysis process ensured that I constructed a theory that was grounded in data gathered from caregivers. The purpose of the constant comparative method in grounded theory research is to assist with conceptualization and categorization in the course of data collection and analysis (Glaser, 1978; Jeon, 2004). By using the coding and analytic procedures made explicit by Glaser, I generated categories, properties of categories, and hypotheses about relationships among categories. The unit of analysis in grounded theory is the incident (Glaser & Strauss, 1967). Constant comparison of incidents within and between interviews, field notes, and documents continues until no new properties or dimensions emerge through the continued coding and comparison. After fracturing and coding the data on the basis of incidents, I clustered codes into categories. I then compared more incidents to my categories. In the final stages, I integrated the categories and their properties, delimited the theory, and wrote the theory (Glaser & Strauss, 1967). Throughout these stages, I developed different levels of categories, as described below.  87  4.8.2  Coding  Codes are the “essential relationship” (Glaser, 1978, p. 55) between data and theory and conceptualize the underlying pattern of a set of empirical indicators in the data. After I generated some initial codes and clustered them into categories, two types of coding (substantive and theoretical) occurred simultaneously (Glaser, 1978, 1992, 1998; Glaser & Strauss, 1967). While substantive codes conceptualize the empirical substance of the problem area, theoretical codes conceptualize how, integrated by the core variable, the categories relate to each other (Glaser, 1978, 1998). Substantive coding carried more of the emphasis as I constructed codes in the data, while theoretical coding carried more of the emphasis as I was sorting and integrating my memos to develop more abstract categories and their relationships (Glaser, 1978). Substantive coding, as described by Glaser (1978) consists of open coding and selective coding. 4.8.2.1 Open Coding During open coding, I coded transcripts on a line-by-line basis. I coded the data “for as many categories that fit” and in “every way possible” (Glaser, 1978, p. 56). The analysis of the first interview took place over five days, and yielded over 150 open codes. During coding, I took care not to assume the analytical relevance of any variable, such as sex, age, relationship status, or income. Glaser emphasized that variables “are never necessarily a property of the process under study until discovered so” (Glaser, 1978, p. 60). While interrogating the data, I continually asked the following questions: “What is this data a study of?” “What is going on here?” “How is the caregiver managing the situation?” and “What categories are suggested by what is going on?” These questions helped  88  me to work at a conceptual level, rather than providing detailed descriptions of incidents (Glaser & Holton, 2004). Furthermore, I constantly interrupted the coding process to write memos (Appendix J). The second interview was coded with the first interview in mind, while I added to my memos. To develop categories from subsequent interviews, field notes, and documents, I continued to ask questions: “What category does this indicate and what property of a category does this incident indicate?” Glaser and Strauss (1967) described a category as similar incidents that are grouped together and given the same conceptual label and property as an element of a category. At times, I used the caregivers’ exact words, or “in- vivo codes,” to vividly illustrate the meaning of incidents. Examples include “walking on egg shells” and “minding your ‘p’s and ‘q’s.” I clustered together similar incidents, such as “walking on egg shells,” and “minding your ‘p’s and ‘q’s,” and initially assigned the conceptual label, “working around the system.” Later, I renamed the category “treading carefully.” I clustered together incidents, such as “keeping at it even when it kills you,” “pushing back,” “pushing until you get help,” “not accepting no for an answer,” “non-stop action to find support” and “not backing down”, and assigned the label “standing firm.” I clustered together incidents such as “persistent asking,” “persistently calling,” and “getting people in” and assigned the label “hauling in support.” I then clustered together the categories “standing firm” and “hauling in support” as properties or sub-tactics of the category “pitbulling.” I eventually collapsed the category “treading carefully” into “pitbulling,” where “treading carefully” became a way to moderate pitbulling. As I continued to write memos, I “trimmed and fit” (Glaser, 1978, p. 60) some of the early categories. I renamed categories as I tried to best capture their meaning. For example, the category “actively managing schooling” was  89  renamed, “orchestrating schooling.” An initial code, “moving” was renamed “changing settings for fitting in,” as I continued to work at a conceptual level. The category “hitting brick walls” was renamed “hitting rock bottom” to better fit incidents of being cut off from others; intense exhaustion; and guilt, layered with grief. Analyzing the data line-by-line was a painstaking process. As mentioned before, I analyzed the first interview over five days, spending approximately 25 hours in the process. After interviewing the first five participants, I found that the coding process became more fluid. New incidents also began to fit into existing categories. Simultaneously, I constantly interrupted the coding process to write memos. After the fifth interview, I had written 25 memos with titles, such as management strategies, support, saving face, advocating and educating, hitting brick walls, guilt, connecting, isolation, trying to keep myself on-track/trying to keep my child on-track, the nature of FASD, conditions in the school-environment, (child) fitting-in, living in a closeknit neighbourhood, self-care, understanding of FASD, preserving self/preserving child, and the nature of the relationship between parent/child. The memos varied in length from a sentence to a few pages. I developed visual images from early interviews and captured them in memos including, for example, an ongoing roller coaster ride, where getting to the top of the hill only lasted for a short while before the cycle started again. I also tried to visually represent the “connection” between caregivers and their children by drawing two figures who were trying to balance opposite sides of a windsurfer. In a second visual, I drew a parent and child pulling on opposite ends of a stretched-out cord, trying to adjust the tension so that it would not break.  90  After analyzing approximately 26 of the 30 interviews, and the field notes, I was developing no new categories. I found that almost all of the data could fit into the existing conceptual categories. I was generating no new incidents and the same properties emerged over and over again. For example, the category “hitting rock bottom” became saturated relatively quickly, with caregivers repeatedly referring to exhaustion, disengaging, giving up, and for biological caregivers, guilt. The conditions that influenced “rock bottom” were also clear. I developed the category “keeping up appearances” with its properties more slowly. Because I felt that some properties of the category “keeping up appearances” were not as well developed I ran the data open almost to the very end of the research process and referred back to earlier memos to try to saturate the category. 4.8.2.2 Selective Coding According to Glaser (1978), selective coding follows open coding and the emergence of a pattern marked the start of selective coding. In the study, the core category that I developed was “intertwining to fit in;” it did not “emerge” as suggested by Glaser (1978). Instead, I developed and refined it over time by using strategies such as constantly comparing the data, re-reading and writing memos, drawing visual presentations, and engaging in “oneupping” conversations with my supervisors. I continued to think conceptually about how caregivers tried to process their main concerns, which were identified early on, although I refined how I labeled the main concerns over time. During selective coding, I explored how the developed categories were related to the core variable, and which kind of core variable would best capture most of the variability in the data. In developing the core category, I  91  referred to the memos and re-read the transcripts, with reference to Glaser’s (1978, 2005) work on core categories. My process of constructing the core category included several “re-starts.” I had written many pages exploring “balancing” as a core category, through which the caregivers tried to process their concerns for themselves and their children. I saw caregivers’ attempts to obtain success for their children in school as detracting from their own self-preservation, which was contributing to their hitting rock bottom. By re-reading the transcripts and memos and in the process of one-upping with the grounded theory researcher on my committee, I determined that the caregivers and their children were not in balance or imbalance, but were “intertwined:” success for children and parents were threatened or made easier, simultaneously. I returned to an early memo, entitled, “the nature of the relationship,” and the visual representations that captured the “essence of relevance” (Glaser, 1978, p. 94) that reflected the data. Although I had captured the essence of the core variable in early memos, I did not use the “intertwining to fit in” label until much later. After writing 75 pages exploring a core category, which I named “intertwining,” I considered whether or not it represented a basic social psychological process (BSPP). While I captured change over time, Glaser (1978) also suggested that a BSPP has at least two distinct stages. Caregivers actively managed and hit rock bottom; however, it was not clear that they moved into a distinct second stage. Glaser’s (2005) description of the theoretical code, “cycling,” seemed to fit the pattern that was captured by the core variable. According to Glaser, cycling refers to repeatedly going over the same path or different paths in succession, and to actions or interactions that spiral downward and upward. I determined that the core category, “intertwining to fit in,” represented a cycle that accounted for most of the variation  92  in behaviour for processing caregivers’ main concerns of preventing their children from failing academically and in social interactions, and, preventing themselves from being regarded as “bad” parents. The following example demonstrates my selective coding. I clustered the categories, “standing firm” and “hauling in support,” (described earlier) as properties of the category “pitbulling.” The category, “treading carefully,” which I originally conceptualized as a property of actively managing, was subsumed as a property of “pitbulling.” In the stage of theoretical coding, I conceptually sorted the category, “pitbulling,” and related it to the core category, as one of four tactics for the strategy, orchestrating schooling. Glaser (1978) suggested that the generation of theory occurs around a core category. In delimiting the theory to one core category, I moved other variables into a role that was subservient to the category in focus and integrated them in terms of that (core) category. The core category integrated the codes by capturing the pattern of behaviour that was relevant and problematic to caregivers with as few concepts as possible. I only included variables that were significantly related to the core category. For example, the category “maintaining structure” was not integrated into the theory because it was concerned with how caregivers managed their home lives with children with FASD. I did not regard the category as relevant to the research question and the core category. My process for finding the variable that accounted for most of the variation in the data, the core category, is detailed in my memos (Appendix K). The core category had integration, saturation, density, completeness, and a delimiting focus (Glaser, 1978, 1992). According to Glaser and Strauss (1967), the “criteria for determining saturation… are a combination of the empirical limits of the data, the integration  93  and density of the theory and the analyst’s theoretical sensitivity” (p. 62). To decide whether or not I had reached saturation, I asked myself if I could saturate the categories and relationships that were integrated by the core category, “intertwining to fit in.” 4.8.2.3 Theoretical Coding After selectively coding for a core category, I began the theoretical coding to indicate how, integrated by the core category, categories were related to one another. Theoretical codes are used to explain integrative patterns.While I was aware of Glaser’s (1978, 2005) coding families, I carefully developed the theoretical codes through relating substantive codes, and the categories to each other, rather than attempting to force Glaser’s coding families onto the process. Glaser’s coding families therefore served as sensitizing concepts, “merely (suggesting) directions in which to look” (Blumer, 1954, p. 7). As outlined by Glaser, I used some of the theoretical codes that fit the data, to weave substantive codes together into hypotheses and a theory. The codes included: outcomes, conditions, strategies, tactics, critical junctures, degree, and cycling. For example, categories such as “pitbulling,” “being on stand-by,” “cultivating connections,” and “anticipating difficulties” were related to the core category as tactics for orchestrating schooling. The categories “adjusting the flow of information,” “reframing,” and “redefining self,” were related to the core category as tactics for “keeping up appearances.” The categories “orchestrating schooling” and “keeping up appearances” were related to the core category as strategies by which caregivers intertwined to fit in. Although the category, “spiraling out of rock bottom” developed early on, it was not until I began the theoretical coding that I renamed the category “re-engaging” and related it  94  to the core category as a strategy for “moving out of rock bottom.” At this point in the process, sorting and integration of memos helped me to relate properties and categories to one another and to the core category. Throughout the process, I drew models of the developing theory, which changed over time as I developed the theory. The pictorial models facilitated my write-up of memos because they provided visual reminders of the connections between categories, properties of categories, and connections of categories to the core category. The use of visual models helped me to clarify the relationships among the categories and I continued to compare the relationships between categories with theoretical codes. This process helped me to integrate the categories into coherent theory (Glaser, 1978). As an example of this process, I have included a visual representation of the developing theory (Appendix L) and an example of my process memos at a later stage of integration (Appendix N). I wrote 74 single-spaced pages of my chapter on the findings, which subsumed many memos. The titles of the memos included: actively managing schooling, keeping up appearances, hitting rock bottom, the educational context, living in a close-knit neighbourhood, isolation, educational policies, staying connected, preserving self, preserving child, waiting it out, shifting expectations, self as expert, changing perspectives, what parents want for themselves/what parents want for their child, running pit bull, armoring, setting the stage, strategizing, overcoming doubt, standing firm, the nature of FASD, contemplating forever, 24/7, being on stand-by, poverty, the go-to person, redefining self, and nature of the relationship between caregiver and child. The process of “one-upping” helped me to refine the codes. For example, during one of my conversations with Dr. Hall, the code “changing perspectives” was fractured and  95  substituted with two codes; namely, “reframing relationships” and “reframing processes.” The in vivo code, “running pit bull,” for example, was changed to a gerund, “pitbulling,” to better fit the intensity of the incidents that comprised the category. The strategies of constantly comparing the data, re-reading and writing memos, drawing visual presentations, and engaging in “one-upping” conversations, helped me to further refine the relationships between categories, and to integrate the theory. They also helped me to stay grounded in the data and prevented any logical elaboration that can easily occur during theoretical coding (Glaser, 1978). 4.9  Rigour In Chapter 4, I argued rigour involved making the steps in the research process clear,  taking up criteria for rigour that are relevant for the particular study, and adding criteria for rigour that account for the guiding theories. In this section, I briefly discuss auditability and theoretical sensitivity. Subsequently, I will discuss the criteria for rigour, as explicated by Glaser (1978, 1992): fit, work, relevance, modifiability, parsimony, and scope. Through Glaser’s criteria, I attended to the rigour of the research product. I conclude this section with additional criteria for rigour, reflexivity, and relationality, which also attend to the integrity of the research process. 4.9.1  Auditability  Auditability is defined as making steps in the research process clear so that another researcher can follow the audit trail or decisions made (Lincoln & Guba, 1985; Sandelowski, 1986). I employed a number of strategies to make the research process clear. I developed  96  process memos about the rigourous examination of the data for negative cases, and outcomes and decisions following the process of “one-upping” with an expert grounded theory researcher. The trail also included memos about my engagement in observations and how this guided my decision-making, along with notes about the fit between data and the emerging analysis. Part of striving for auditability was writing memos on when I thought I had reached saturation. I saturated most categories through the process of theoretical sampling and stopped sampling when I felt confident that my theory explained most of the variability in the data and I had saturated the categories and relationships that were integrated by my core category, “intertwining to fit in.” I also purposefully looked for negative cases and considered them when making these decisions. The following excerpt is from a memo on saturation for the “rock bottom” category, from an interview with Participant 14: The data on rock bottom is repeating itself. I am getting the same concepts over and over. When I did coding, all of the incidents around rock bottom seemed to fit existing codes: guilt, exhaustion, disengaging, waiting it out… Conditions that influence seems to be identified: support, close knit community… I am not getting any new information. 4.9.2  Theoretical Sensitivity  Glaser and Strauss (1967) emphasized the important role that theoretical sensitivity plays in conceptualizing and formulating a substantive grounded theory. They defined theoretical sensitivity as the ability to have theoretical insight into the area of research, as well as the researcher’s “personal and temperamental bent” (p. 46). Hall (1998) emphasized that rigour in grounded theory is strongly connected to theoretical sensitivity: “When analysts  97  are theoretically sensitive, they are more likely to develop a grounded theory that fits, works, is relevant and modifiable, and has scope and parsimony” (p. 74). My educational and work experiences have increased my sensitivity to caregiverschool interactions and the experiences of families of children with FASD. Hall (1998) referred to these experiences as “sources of theoretical sensitivity” (p. 74). Glaser (1978) argued that staying open to the data enhances the researcher’s theoretical sensitivity. By acknowledging the theories, exposure to the FASD literature, and educational and work experiences that I brought to the study, I strived to stay open to the data and caregiver perspectives. 4.9.3  Grounded Theory Criteria for Rigour  The criteria for rigour, as defined by Glaser (1992), include fit, work, relevance, modifiability, parsimony, and scope. Glaser defined fit as the relationship of the core category to the salient social problem and its ability to account for most of the variation in behaviour used to address the problem. A grounded theory that works will explain the major variations in behaviour in the area that attempts to address the problem to be processed in a meaningful way. If a grounded theory fits and works, it has achieved relevance. Furthermore, a core category that fits, is relevant, and works can be modified when new data present variations in properties and categories. Accounting for as much variation in the data with as few concepts as possible maximizes parsimony and scope (Glaser, 1978, 1992). The core category fit because it accounted for most of the variation in behaviour as caregivers processed their main concerns. I also aimed for fit through a process of naming and renaming patterns in the data to capture their imagery and meaning in the best ways  98  (Glaser, 2002). By naming patterns through a process of ongoing fitting of the data, I was able to reach a point where the core category, categories, and properties developed appeared to fit the data very well. For example, the category “treading carefully” was initially named, “being strategic.” I changed the label to “treading carefully” because it presented a better fit for the meaning of the incidents that made up the category. Renaming categories and properties, or constantly fitting them to the data, helped me to choose the words that best captured the patterns in the data. By conceptualizing the data and moving beyond description, I expanded the individual constructions. Because the core category explained the major variations in caregiver behaviour it worked. While the final version of the core category was not directly validated with participants, participants indicated codes and the relationships between categories and properties, as well as categories and the developing theory were relevant to their experiences. A core category that fits, works, and is relevant is more likely to be modifiable so that new data can contribute to the theory under different conditions. The theory appeared to be parsimonious in that a few well developed categories accounted for a considerable amount of scope, rendering the theory dense and saturated (Glaser, 1978). Parsimony, according to Cutcliffe and Harder (2009), is related to the elegance and straightforwardness of the findings. Because the grounded theory I developed went beyond description to the level of substantive theory and was abstract and contained it met the criteria for parsimony. I rewrote the chapter on the findings several times, which is typical for grounded theory research, contributing to a more parsimonious theory.  99  4.9.4  Additional Criteria for Rigour: Reflexivity and Relationality  Reflexivity addresses the influence of investigator-participant interactions on the construction of data, while relationality addresses power and trust relationships between participants and researchers (Hall & Callery, 2001). As discussed previously, extending the criteria for rigour to incorporate reflexivity and relationality enhanced the quality of the study because it made the process of constructing the data and the theory through analysis more transparent. It also accounted for the use of symbolic interactionism as the guiding theoretical perspective. These criteria are consistent with the theory of symbolic interactionism because the social processes that influence the generation of data and, consequently, the social construction of knowledge and co-construction of meaning are acknowledged. The notions of reflexivity and relationality are also consistent with the epistemological foundations of grounded theory (Hall & Callery, 2001). Because criteria for rigour in grounded theory, as delineated by Glaser (1978, 1992), emerged from postpositivist assumptions about the nature of knowledge the question can be asked how criteria for rigour that acknowledge the social construction of data can be integrated without creating tensions. Although contested by Glaser (2005), grounded theory is understood by most authors (e.g., Annells, 1996; Kools, McCarthy, Durham, & Robrecht, 1996; Suddaby, 2006) to be partially predicated on symbolic interactionism. Hall and Callery (2001) further answered this question by pointing out that “because the postpositivist paradigm acknowledges that reality is imperfectly apprehensible and that the research process requires critical examination, it does not preclude recognizing the social construction of knowledge” (p. 262). Further,  100  reflexivity and relationality deal with the process of doing grounded theory, rather than the product, which is addressed by Glaser’s criteria. I attempted to be reflexive about “filters that may come into play during data collection and interpretation” (Tan & Hall, 2007, p. 604) by detailing my prior reading in the substantive areas, my educational and work experiences, my guiding theoretical perspective, and my research actions and decisions. I also attended to reflexivity by incorporating details from memos into my final account, and by keeping a personal reflexive journal to make explicit my decisions and ideas. While recognizing that subtle biases may be unacknowledged, I tried to keep track of any biases in my reflexive journal throughout the research process. Previous experiences enhanced my theoretical sensitivity but using constant comparison also forced me to confront potential biases that were not grounded in the data. McGhee, Marland, and Atkinson (2007) argued that self-awareness expressed through honest memo writing underlies the process of reflexivity. As mentioned earlier in this chapter, my honest reflection helped me question how my own middle-class values affected the research process. For example, in a process memo, I noted my surprise when, during an interview with a caregiver of a school-aged child with FASD, I heard that she also raised five other children with FASD. I reflected on my surprise and commented in my journal that my reaction may have disclosed my prejudice. Despite my best efforts to focus on process and ask clarifying questions, I noted that I sometimes responded approvingly during interviews with comments such as “good,” or even, “fantastic.” In my reflexive journal, I noted how these may have shaped the interviews. By going over my notes in the reflexive journal (which included notes made during coding, jotted down during interviews, or made while listening to the audio-tapes or as field notes  101  after interviews), I appreciated my effects on the data. I then checked my perspectives documented against other strands of data collected at different times. I also used a number of strategies to address relationality throughout the research process. These were addressed in detail in the ethical considerations section (Section 4.5). They included providing participants with a chance to share their main concerns; offering participants the choice of where, when, and how long to meet; giving participants an opportunity to respond to the transcripts and categories that I produced; approaching the need for additional support in a way that minimized stigma; making decisions around recording second interviews; and providing participants with an executive summary of the research. I strived to be fair to participants at all stages of the research process. For example, I spent a significant amount of time on the informed consent process and continued to negotiate consent when needed throughout the research process. I tried to capture all perspectives. I also addressed relationality through my style of interacting with participants. I sought to facilitate a context where caregivers felt free to disclose sensitive information, through an empathic, respectful, and congruent style. Interviews took place in a context of developing trust and caregivers often disclosed more sensitive information towards the end of the interviews. I was open about my status as a parent with school-aged children, whenever I was asked. I used tactics, such as empathy and self-disclosure, when appropriate to democratize the research situation as much as possible, and to build rapport. Nevertheless, some researchers (e.g., Kvale, 1996) have argued that the very tactics meant to democratize the research process can actually contribute to exposing to scrutiny a vulnerable and possibly marginalized group. Kvale’s (1996) stance is supported by the work of symbolic  102  interactionists such as Perinbanayagam (1985) who, according to Hall and Callery (2001), emphasized that “freedom to act is circumscribed by power relationships, and ideology can be used by more privileged groups to defend their assets and constrain the patterns of activity and plans of less powerful others.” (p. 269). By creating an interview environment characterized by empathy, respect, and developing trust I may have increased participation and contributed to an increase in my power over participants. While acknowledging the intertwining actions to democratize the research process and issues of power, I suggest that my attempt to address relationality was part of my effort to achieve rigour. 4.10 Summary In this chapter, I began with a description of the study design. Next, I provided definitions of terms, and listed the research questions, which was followed by a discussion of ethical considerations, data collection procedures, theoretical sampling, data analysis, and theoretical memos. I concluded the chapter with a description of rigour. In Chapter 5, I present the findings of the study.  103  Chapter 5: Intertwining to Fit In 5.1  Introduction This chapter provides an overview of my core category, namely, “intertwining to fit  in.” My core category captures the pattern of behaviour that explains how caregivers of elementary school-aged children with FASD continuously try to resolve their main concerns, which are preventing their children from failing academically and in social interactions and preventing themselves from being regarded as “bad” parents. In this chapter, I describe the core category and categories that are related to the core category. Rather than writing the theory as past tense findings I use the present tense where possible to indicate that the theory explains an on-going cycle. I use the terms caregivers, parents, or participants interchangeably to refer to the caregiver participants in my study. I start with a description of the study sample to provide a context for the findings and to orient the reader to the nature of the sample. I then provide a detailed description of the core category, intertwining to fit in. Because the core category integrates all of the other categories, the description of my core category serves as an overview for my theory. I follow my detailed description of the core category by briefly describing the main concerns and the long-term outcomes, including the ideal long-term outcomes caregivers are attempting to achieve through intertwining to fit in. I follow this by describing the strategy, orchestrating schooling with its related tactics and sub-tactics. I integrate conditions that influence orchestrating schooling in my description and describe how outcomes from using strategies to orchestrate schooling affect the process of keeping up appearances. Conditions that  104  influence keeping up appearances are incorporated in my explanation of the strategy, with its related tactics and sub-tactics. Throughout my explanations, I refer to how outcomes from using strategies to keep up appearances affect the process of orchestrating schooling and vice versa. I portray two critical junctures: hitting rock bottom and reaching islands of calm, which are influenced by conditions and associated with short-term outcomes. I conclude with a description of the tactics through which caregivers re-engage with the school system to reenter the cycle of intertwining to fit in, followed a brief summary. 5.2  Sample Characteristics I include a description of my sample to provide a context for the findings and orient  the reader to the sample. I collected demographic information on caregivers at the first interview, using a structured guide (Appendix M). The means and ranges for appropriate variables for the entire sample are summarized in text form. I provide additional description of caregiver and child characteristics in table form (Appendix O). Seventeen caregivers of school-aged children with FASD were included in the study. They lived across the Lower Mainland of British Columbia. The sample included six biological mothers, one biological father, one step-mother (who was a biological mother of another child), two grandmothers, five adoptive mothers, and two foster mothers. One of the foster mothers was in the process of adopting her child. The average age of parents was 42.9 years (range 28 to 54 years), while the average age of grandparents included in the study was 59.5 years (range 58 to 61 years). Eleven of the participants were single; six participants were married or lived in a common law relationship. In total, 11 of 17 participants graduated from secondary school. Of the 11  105  participants who graduated from secondary school, 7 participants also had a diploma or completed some college or university courses. Two participants had graduate degrees and one participant had a bachelor’s degree and was working on completing a graduate degree. One participant was employed full-time outside the home, while six participants were employed part-time outside the home. Three participants were part-time students at the time of the first interview; two of them indicated throughout the course of the research that they had to quit or delay their studies. Three participants indicated that they volunteered in their communities. Seven participants were not employed outside the home. Of those participants, five indicated that they were receiving “welfare,” “income assistance,” or “disability payments.” Four participants indicated that they accessed the food bank to provide food for their families. The average age of the school-aged children with FASD was 9 years (range 6 to 12 years). All of the parents indicated that their children were affected by prenatal exposure to alcohol to the best of their knowledge. Nine of the school-aged children had a formal diagnosis of FAS. Seven of the children had no siblings. Ten children had siblings living with them in the home (range 1 to 5); the average number of siblings was 2.3. 5.3  The Core Category: Intertwining to Fit In The core category explains how caregivers come together with their children through  intertwining; they use the strategies of orchestrating schooling and keeping up appearances to maintain their relationships with their children (intertwine) and engage with the school system in ways that permit them to be more “like” other parents (fitting in) and their children to be fitting in with academic expectations and other children. Regulating their relationships  106  with their children is intrinsic to intertwining to fit in and is used by caregivers to maintain their “parental” relationships with their children but avoid becoming intertwined to the point where they deny opportunities for their children to have the independence to fit in. Each of the two main strategies is comprised of tactics and sub-tactics that help parents and their children stay intertwined to fit in and regulate their relationships with their children so that parents can try to maintain “themselves” in the context of their relationships. The coming together with their children (intertwining), in ways that permit them to be “like” other parents and their children “like” other students, involves their constant management of dynamic tensions between being too intertwined or not intertwined enough. They are focusing their energy and time on their relationships with their children (especially when tactics to orchestrate schooling are unsuccessful and their children risk their placement at school or are not attending school), and also on their relationships with school personnel. Using the strategies successfully reduced the amount of time parents spent regulating their relationships with their children, permitted children more independence and allowed parents to direct more of their energy towards keeping up appearances in other areas of their lives. None of the actions parents take occur in a vacuum. Conditions, such as availability of support, openness of school personnel to parents as experts on their children, living in poverty, and living with stigma, can influence caregivers’ attempts to intertwine to fit in. They have to throttle tactics up or down and direct more or less energy towards regulating the relationship with their children to stay intertwined in ways that permit them and their children to fit in. Because school conditions and children’s conditions change continually, caregivers are engaging and re-engaging in orchestrating schooling and keeping up  107  appearances to go through cycles of intertwining to fit in. Figure 5.1 presents an overview of the core category.  Figure 5.1: Intertwining to Fit In  108  Orchestrating schooling is one of the strategies caregivers use to intertwine to fit in. The caregivers orchestrate schooling because they are trying to help their children succeed academically and in social interactions (fit in with other children and academic expectations). Staying intertwined with their children is partially reliant on orchestrating schooling because, if children are having difficulty with academic requirements or being shunned by other children, caregivers have to put more energy into orchestrating schooling and regulating their relationships with their children, which makes staying intertwined more difficult. Conditions, such as modifications in school environments, influence the energy and time caregivers have to devote to tactics to support their children at school and in social interactions. Devoting extensive energy and time to promote children’s academic and social success (orchestrating schooling) either increases (hitting rock bottom) or decreases (reaching islands of calm) the time and energy caregivers devote to regulating their relationships with children to stay intertwined. Educational environments that are inflexible increase efforts to actively orchestrate schooling. I think that the education system, the way it’s set up, it is geared toward normal, average children. And I think it’s also based on almost an industrial model, almost like a car plant where you send them in, and then you fit this on to them, and then you push them down the conveyor belt and put a bunch of other things onto them. And it’s geared toward conformity, really. And for a child who doesn’t know how to do that, or isn’t capable of doing that, then education becomes really, really challenging…. the ….challenge is to find a place where he is wanted and will be treated kind of respectfully and taught (17.1, lines 25-32).  109  Caregivers use keeping up appearances as a strategy to deal with one of their major concerns, which is that they will be regarded as “bad” parents. They use tactics to keep up appearances so they can fit in with other parents and stay intertwined with their children. They need some successes in their efforts to be seen as “good” parents so they can maintain the energy, time, and commitment to stay intertwined with their children through regulating their relationships. Putting strings of success (islands of calm) together contributes to their desired long-term outcomes which include happiness, stability and success for their children, and happiness, connection, recognition as a parent and self-actualization for themselves. Working towards those desired outcomes enables them to have the energy and time to regulate their relationships with their children. Living in supportive neighbourhoods and living in poverty and with stigma are just some of the conditions that influence the amount of energy caregivers have available to direct towards staying intertwined with their children. If they are using a lot of energy and time to promote themselves as “good” or responsible parents by looking after basic needs, less time and energy is available for staying intertwined. A single father, who describes himself as “on Welfare, with $503 of support with two kids” describes his difficulties keeping up appearances at his child’s school: Because the principal that was there [said], “the kids got dirty clothes.” But listen what happened that time, the laundry machine there, okay, upstairs, there was only one washer, two dryers for eighteen apartments. Now when you get family allowance you’ve got to be there early in the morning, because if you’re not you can’t wash your clothes. Now me, two kids, it gets piled up there and then okay I got… okay, like  110  Monday they sprayed my place there [for lice], three weeks in a row. I got still twelve loads of laundry to do. But the laundry room is always busy. Do it at the Laundromat, do you know how much it costs at the Laundromat? $1.50 to wash, $1.50 to dry (14.1, lines 620-629). Caregivers’ efforts to keep up appearances are affected by the short-term outcomes from orchestrating schooling. It is difficult for them to use tactics to keep up appearances if, despite all of their tactics to orchestrate schooling, their children are not demonstrating signs of success academically or socially. Their children’s success reflects on their efforts to promote themselves as “good” parents. Outcomes from using tactics to keep up appearances affect how parents use tactics for orchestrating schooling because, if parents are being shunned by school personnel or left out communication and planning, they are more likely to hit rock bottom than to reach islands of calm. Because conditions caregivers experience continually change caregivers are constantly engaging and re-engaging in strategies and tactics, throttling strategies up or throttling them down as needed, so that they can regulate their relationships with their children, stay intertwined and both fit in. In other words, they cycle in and out of the core category. As indicated in this quotation, there is never enough stability in the school system or their children’s interactions with the school system for caregivers to occupy islands of calm for extensive periods of time. Well the difference from one year to the next is the people that you interact with during that year. So that for example in Kindergarten, that was sort of a… not a very good year. And so the next year you go into the same thing, and this an even worse  111  year. So it’s like you’re going through almost like the same dynamics, in the same building, with largely the same children. The only difference is the adults. And the difference is the adult interaction. And then often his [assistant].… he didn’t have a firm SEA until probably around December sometimes. Or he had someone who kept changing, and then rather than helping it’s more babysitting. And so you’ve got those kinds of variations (17.1, lines 1026-1036). The amount of energy and time caregivers devote to regulating their relationships with their children in intertwining changes constantly depending on conditions and whether their efforts to orchestrate schooling and keep up appearances are working. There are cycles where intertwining to fit in is easier and caregivers and their children are more comfortably intertwined and moving toward their long-term outcomes; there are also cycles where intertwining to fit in is more difficult with too much or too little distance between caregivers and their children. In cycles where caregivers have to spend more energy and time on orchestrating schooling so they and their children can stay intertwined to fit in, they also have to expend time and energy regulating their relationships. Consequently, they have less time and energy to spend on keeping up appearances. Short-term outcomes from using the strategies to intertwine to fit in are interconnected. Short-term outcomes from both orchestrating schooling and keeping up appearances affect the tactics and short-term outcomes associated with the other strategy. When caregivers are not succeeding with orchestrating schooling they hit rock bottom. When they hit rock bottom, with none of their tactics working to help their children succeed at school, they cannot keep up appearances in the eyes of the school system. Thus, hitting rock bottom, with the negative short-term  112  outcomes, undermines caregivers’ strategies, puts their relationships with their children in jeopardy, and threatens their long-term outcomes. But at the same time [through being at the school] trying to help him to be there and to fit in. And so, I mean, there’s no way that anyone could say that that piece hasn’t been there, ….that “his parents either don’t care or are too self-involved, or whatever” (17.1, lines 228-232). The strategies for intertwining to fit in are complementary because aiming for success for their children helps caregivers to be regarded as “good” and responsible parents; being seen as “good” parents increases the likelihood their children will fit in at school and socially. Children do not fit in without the parents and the caregivers will not fit in as parents unless they can help their children fit in. Hitting rock bottom undermines caregivers’ ideal outcomes of happiness, connection, recognition as a parent, and accomplishment other than parenting. Putting a lot of time and energy into keeping up their appearances makes it more difficult for caregivers to employ tactics to orchestrate schooling and promote academic and social success and happiness for their children. When caregivers reach islands of calm, with the short-term outcomes from orchestrating schooling reached, they can throttle down their efforts, enjoy respite, and feel good about themselves as parents. They have more energy available to devote to keeping up appearances. Caregivers feel they have reached islands of calm when their children are happy at school, stay in school, maintain their routines, show more mature behaviours, and feel included.  113  Regulating their relationships with their children is intrinsic to intertwining to fit in. Regulating their relationships is used by caregivers to maintain their “parental” relationships with their children but to avoid becoming intertwined to the point where they deny opportunities for their children to have the independence to fit in. If caregivers are too intertwined neither they nor their children can sustain the level of involvement necessary to fit in (they are too close); however, if caregivers feel they cannot sustain their relationships and contemplate being un-entwined their relationships become too distant. There is the threat of loss of the relationship and an abandoning of their efforts to fit their children and themselves in. Thus, regulating their relationships with their children involves managing dynamic tensions between being too involved or too distant, without feeling they were abandoning or smothering their children. And I felt very strongly that I needed to be present in the school, since I could not rely on my son to let me know what was going on, my presence in the school would at least provide him with some sense of being safe and of being protected (17.1, lines 120-124). For caregivers of children with FASD, intertwining to fit in with their children means not only being constantly aware of how their children are doing and behaving but also vigilant about how they are perceived by others. Caregivers constantly observe their children, observe others to determine how they are perceived as parents, make sense of these observations, and re-direct their actions towards tactics to orchestrate schooling and/or keep up appearances to make sure they and their children stay intertwined to fit in.  114  The constantly changing educational environment, where school staff change, policies are implemented differently for different students, and the allocation of supports changes from year to year, influences children’s behaviour. Under those conditions, caregivers constantly adjust the energy and time they put into regulating their relationships with their children to make sure they continue to stay intertwined to fit in. There are cycles where caregivers manage to move into times of respite where intertwining is more comfortable (reaching islands of calm). There are also cycles where caregivers have to increase tactics to orchestrate schooling because their children are not finding academic and social success which puts keeping up appearances in jeopardy (hitting rock bottom). Increasing the time and energy directed towards orchestrating their children’s schooling drains energy and comes at a cost to other aspects of a caregiver’s self. I have run out lately and find myself just fighting the battles for [my child] and putting me aside, I know, I know, without me she will not thrive but I have been doing this many years and it’s brick wall after brick wall… and you run out of steam ya know (5.1, e-mail correspondence). Caregivers refer to children’s difficulties with emotion regulation, eating, sleeping, adapting to changes, and sensory hypersensitivity; all of those indicators of children’s behaviour influence how much caregivers need to regulate their relationships so they and their children can fit in. All caregivers closely observe their children for changes in behaviour that signal when they have to throttle up tactics and adjust the strategies, orchestrating schooling and keeping up appearances, which support intertwining so they and their children can fit in. Being constantly alert for changes in their children’s behaviour, part  115  of regulating their relationships, drains their energy over time, especially when caregivers encounter negative reactions to their attempts to fit their children in and to fit in as parents. A foster mother remarked: So it’s what… it’s the common thread that I see with all of us that are caregivers, in whatever capacity for kids with FASD, is that our energy is so depleted. We’ve got this whole other package of advocacy and support and fighting tooth and nail for services that are so selective and so bizarrely… the criteria is so bizarre to be facilitated into the support services. Like you know, how can I even do that? (16.1, lines 1247-1254). Caregivers also regulate their relationships through shifting their expectations about what constitutes success for their children and their expectations for success for themselves as parents. They increase their vigilance in response to any changes they are observing in their children’s behaviour so they can figure out how much time and energy they need to put into the relationship. Shifting expectations is about lowering their expectations for short-term success so parents do not give up. When caregivers shift their expectations around school attendance (part-time rather than full-time) or what they expect their children to learn in school they can continue devoting time and energy to regulating their relationships and using their tactics because there is less resistance from their children. That’s when I quit fighting with him. If I can get him up and get him to school without a lot of stress on either me or him, he goes. I don’t fight him anymore. It’s not worth it, and it was causing me to not feel good, it was causing stress in my life,  116  and I don’t need that on my heart. And it’s causing stress in him, he’s a very gentle person. … When I stopped fighting with him about going to school and fighting him about everything, it’s been a lot better (7.1, lines 263-274). Hitting rock bottom means the strategies of orchestrating schooling and keeping up appearances in the context of the school system are not working. When caregivers reach a critical juncture of hitting rock bottom they withdraw from using the strategies to fit their children in the school system and to fit in as parents so they can stay intertwined. The caregivers indicate they disengage from others, feel exhausted, angry, and drained, and, in some cases, guilt and grief. Hitting rock bottom requires caregivers to devote more time and energy to regulating their relationships with their children. Conditions, such as the availability and accessibility of supports or living in a close-knit neighbourhood, affect the severity of hitting rock bottom and how long it lasts. For a number of caregivers hitting rock bottom put intertwining (their relationships with their children) under threat: And at one point I was so frustrated and so in my own guilt and whatever, I said maybe I need to give her up…. I mean I couldn’t, but out of sheer desperation I was ready to go, “I can’t do it. (5.1, lines 213-221). On the other hand, reaching islands of calm is a critical juncture with caregivers moving into times of respite, tranquility, getting support, and feeling hope so that intertwining to fit in is easier. Reaching islands of calm provides caregivers with evidence of their success in orchestrating schooling which has positive effects on keeping up appearances because their children’s success reflects well on their parenting capacities. On islands of calm,  117  relationships with children are on a firmer footing, which requires less time and energy being spent on regulating relationships and more time for caregivers to develop accomplishments in other aspects of their lives. Islands of calm represent periods when children are happy going to school, feeling included, staying in school, behaving more maturely, and keeping to their routines. Because children are perceived as fitting in, caregivers can throttle down tactics and scale down attempts to keep up appearances at their children’s schools. They can direct more of their energy into keeping up appearances in other parts of their lives through socializing, working, volunteering and hobbies. For biological mothers, islands of calm are times where guilt associated with the affected child is less prominent. Unfortunately, islands of calm do not persist because children and schools are constantly changing and caregivers are dealing with loss of stability. Caregivers move out of rock bottom or from islands of calm towards increased efforts to orchestrate schooling and keep up appearances by re-engaging with the school system. They advocate, educate, and change settings. If the re-engaging is successful, they return to orchestrating schooling and keeping up appearances at their child’s school and in the neighbourhoods where they live. I’ve talked to them and I said, “My little one has FASD and I said there’s stuff you have to understand about her…that there’s things you might tell her and it goes over her head and she’ll ask you again” and I said “I don’t want you to think she’s dumb or stupid or lazy…I said she has a disease…FASD…and she might be slower to pick up stuff and that you might have to repeat it to her…you know” (3.1, lines 251-256).  118  Caregivers’ success at employing strategies to intertwine with their children to fit in, affects their long-term outcomes. Caregivers enter cycles, from hitting rock bottom or reaching islands of calm, depending on whether they are successful or unsuccessful at shortterm outcomes. When islands of calm are strung together for longer periods of time through persistent caregiver actions and favourable conditions, caregivers have a sense that they are cycling forward towards their ideal long-term outcomes for themselves and their children. For children, ideal long-term outcomes include social and academic success, happiness, independence, and stability. For caregivers, ideal long-term outcomes include happiness, hopefulness, connection, recognition as a good parent, and actualization in areas other than parenting. If, after many cycles, the ideal long-term outcomes associated with the core category are not achieved, there is a sense that caregivers are cycling backwards or losing ground. For children, academic and social success and independence are threatened. Caregivers can feel their sense of self-identity beyond parenting slipping away, as well as their sense of connectedness and of being a good parent. If they cycle back to the point of hitting rock bottom they experience exhaustion, can be excluded or shunned by others, disconnect from others, and feel unacceptable as parents. In those situations, the negative outcomes associated with rock bottom become more pronounced and there is danger of ruptures in their relationships, which threaten intertwining to fit in. In the next two sections of the chapter, I describe the main concerns and long-term outcomes, including the ideal outcomes caregivers are striving for.  119  5.4  The Main Concerns The main problems participants are “trying to manage” are preventing their children  from failing academically and in social interactions and, preventing themselves from being regarded as “bad” parents. Caregivers continuously and simultaneously try to resolve or process the main concerns for their children as well as the concerns for themselves. It doesn’t really matter what it is, you’ve always got the aftermath…., in addition to trying to navigate through as a parent, in hopes of it making it better for the child (16.1, lines 108-116). All caregivers clearly articulated their main concerns for their children. They describe their children as “failing” at school when they observe them to be not teachable, not attending school properly, not able to take in information, not getting along with others, not making progress, and not keeping their behavioural difficulties less evident. The main concerns caregivers tried to process for themselves were developed over time through constant comparison of data from interview transcripts, fieldnotes and documents. My constant comparisons indicated that when caregivers perceive their children to be failing, their attempts to prevent themselves from being regarded as “bad” parents are undermined. They feel that they are not accepted as parents and are blamed for what is happening to their children. They see themselves as different from other parents and as not appearing “responsible and good.” A caregiver who described her interactions with school personnel and perceived her child to be failing academically and in social interactions, said: “I can’t give her what she needs.” What does that make me feel like?” (5.1, lines 221-222).  120  Through a pattern of behaviour, intertwining to fit in, caregivers attempt to resolve their main concerns and strive towards ideal long-term outcomes for themselves and their children. The long-term outcomes are described in the next section. 5.5  Long-Term Outcomes To respond to their main concerns, caregivers strive for particular positive long-term  outcomes or ideal outcomes. When strategies are successful, caregivers perceive them and their children to be moving closer to positive long-term outcomes. High demands on energy and time with no opportunities to meet caregivers’ long-term ideal outcomes can lead to caregivers contemplating being un-entwined from their children, a negative long-term outcome. For children, ideal long-term outcomes include academic and social success, happiness, independence, and stability. For caregivers, ideal long-term outcomes include being connected, recognition as a parent, happiness, and a sense of self-actualization or accomplishment beyond the parental identity. A parent expresses the common need of all caregivers interviewed to be affirmed as a good parent by others: “It’s amazing how…every parent needs that. They need somebody in their corner, going ‘you’re doing a good job.’…. That’s just so important” (9.1, lines 253-258). Caregivers define academic and social success for their children as “being the best that they can be.” Participants want their children to read, know “some” math, have life skills, complete their grades and graduate. Social success includes children belonging and developing long-term friendships with peers. Their children feel “wanted and welcome,” “they belong,” “comfortable,” “the same,” “emotionally safe,” “respected,” “a part of.”  121  Rather than focusing on any positive peer relationship, the caregivers were looking at belonging in the context of the school system. Caregivers’ definitions for success for children also include stability and independence. When intertwining to fit in through strategies (orchestrating schooling and keeping up appearances) is successful, children are more likely to attend school and stay in the same school or program over the long-term. Because parents do not have to intervene when children are successful in school, caregivers see their children as more independent which makes them feel like they are moving their children forward. When long-term outcomes of success are achieved by their children, caregivers can claim substantial evidence supporting their status as “good” parents. They can be viewed in “the eyes of the authorities,” particularly school personnel, as good and responsible parents. Beyond being seen as “good and responsible parents,” caregivers’ long-term ideal outcomes are to be connected with other parents, feel happy and hopeful, obtain a sense of identity from hobbies or paid work or volunteering, and feel that they are more like other parents. The two sets of long-term outcomes are intertwined. Parents cannot fit in without children fitting in and children have difficulty fitting in if parents do not fit in. When children are happy and successful in school caregivers are “feeling good about themselves as a parent,” “feeling comfortable with themselves as a parent, “and “feeling good about supporting their child.” They feel like responsible parents because they feel they do “what a parent is supposed to do.” And the more I do, the better I feel about the safety network for my children to make sure that they’re learning, that they’re okay, they’re happy, they’re adjusted to what’s  122  happening and asking them, too, if they like it. “What do you like about it? It’s fun, Mom. I’m learning” (1.1, lines 741-745). For biological parents, an additional element of success is the sense that they have made up for past mistakes through moving their children forward. When intertwining to fit in leads to success for children biological parents can reinvest in hope for the future: If she feels included and has a good time, then she’ll feel more inclined to venture forward and, you know, maybe try other things…if you don’t have other successes it makes it very hard to want to jump in (5.1., document analysis). Notwithstanding many caregivers’ views that they will likely have to orchestrate schooling for their children or keep up appearances for themselves for what feels like forever, seeing their children staying in school, possibly graduating and being more independent allows caregivers to be more hopeful about their children’s futures and to feel like good and responsible parents. For biological parents, there is a sense that the cycle of addiction in their families may be broken. I wish there was more…as I was growing up I wished there was something for me. Yeah…like my parents didn’t know. Of course my Mom must have did this or that but didn’t know there were supports out there. Where I broke the ice and here I am…parenting my children and it’s hard…it is hard (1.1, lines 1174-1179). In part, through the pattern of behaviour, intertwining to fit in, caregivers find their happiness and a sense of accomplishment in seeing their children succeed academically and in their relationships with peers:  123  I’m so proud of her…she’s learning her multiplications and she wants me to teach her how to do the…division (3.1, lines 260-261). Successful and happy children increase caregivers’ positive feelings about themselves as parents. Realistically, having caregivers articulate their ideal long-term outcomes as success, does not guarantee their strategies will be successful for their children. Their children may not fit in. Who wants to do something they fail at? That is what ends up happening, and it gets really disheartening because all she wants to do is fit in (5.1, document analysis) Being unable to achieve even short-term successes or constantly hitting rock bottom, with children and caregivers having great difficulty with the process of intertwining to fit in, requires caregivers to invest extensive energy and time in regulating relationships with their children. Investing energy and time, but not moving towards long-term ideal outcomes can lead to caregivers contemplating being un-entwined from their children: I have my moments where I just wallow away in my guilt and lose my mind, kind of thing, and I’m useless. And those are the days I go, maybe I just got to give her up, because I can’t do this. (5.1, line 362) Using theoretical sampling, I was able to access one caregiver who became un-entwined, or made the decision to give up on the caregiving relationship when, under conditions of limited support, she repeatedly failed to meet the outcomes she was striving for. Although potentially moving back in to the caregiver relationship with her child, she was not yet actively  124  orchestrating her child’s schooling. As a result, she was concerned about preventing being perceived as an uninvolved and uncaring parent: And the group home is like ‘We’ll take care of everything.’ Cause they want to take care of everything….They’re going to go get him [from school]…. I told them I have no problem in picking him up…. but they said they will (13.1, lines 277-288). All of my participants reached short-term outcomes (articulated in hitting rock bottom versus reaching islands of calm) resulting from their efforts to orchestrate their children’s schooling, in the context of FASD, through intertwining to fit in for children. A system that is constantly changing and unresponsive to children’s challenges creates conditions that increase the likelihood caregivers will move toward hitting rock bottom. Over time, when none of the ideal outcomes caregivers are striving for are reached and many instances of hitting rock bottom occur, rather than reaching islands of calm, caregivers regard themselves as cycling backwards: I guess my personal philosophy is if you’re not moving forward you’re actually going backwards. So I think without there being some sense of moving forward then we’re in trouble I guess, really….either in trouble or we’re going backwards (16.1, lines 834-838). Caregivers indicate their sacrifices of their ideal long-term outcomes, being connected with other parents, feeling happy and hopeful, obtaining a sense of identity from hobbies or paid work or volunteering, and feeling like they are more like other parents, can be tolerated more easily when their children are succeeding. When their children experience unhappiness and  125  instability, caregivers feel badly about themselves as parents and guilty. Under those circumstances they can cut themselves off from others, including their children. To summarize, long-term outcomes caregivers are attempting to achieve for their children include success at school and social relationships, happiness, independence, and stability. All of these outcomes require extensive periods of calm, without major disruptions to children’s lives. That means that caregivers, in spite of achieving some islands of calm, constantly have to re-enter the cycle of intertwining to fit in to achieve the short-term outcomes every step of the way, outcomes which provide hope over the longer term. For parents, the only route to being connected, maintaining recognition as a parent, feeling happiness, and achieving a sense of self-actualization or accomplishment beyond the parental identity is through continuing to enter the cycle of intertwining to fit in and using the strategies over and over again. That enables them to stay in their relationships with their children without spending all of their time regulating them. If there are no signs of success and hitting rock bottom goes on and on or is almost constant, caregivers either contemplate leaving or leave their relationships with their children. In the next two sections of the chapter, I explain in detail, the strategies caregivers use, beginning with orchestrating schooling. 5.6  Orchestrating Schooling Orchestrating schooling involves conscious actions caregivers take to promote their  children’s academic success and success in social interactions (help them to fit in), while staying intertwined with their children. Caregivers perceive tactics for orchestrating schooling to be working and themselves and their children fitting in when they see their children making academic progress, attending school, keeping to their routine, making  126  friends and enjoying school. The kinds of outcomes caregivers are ultimately seeking for their children where they belong and function positively with peers, are captured by the following quotation from an adoptive mother: If you don’t fit in, if you don’t belong, not only don’t fit in but you aren’t allowed to fit in, you aren’t allowed to belong, you aren’t allowed to function in a positive way, then what’s left for you? (17.1, lines 396-399). Orchestrating schooling is comprised of four tactics that help caregivers and their children succeed in school and social relationships so caregivers and children can stay intertwined to fit in, while caregivers are trying to keep up appearances and maintain “self” in the context of their relationships. The tactics are being on stand-by, pitbulling, cultivating connections, and anticipating difficulties. Figure 5.2 provides a visual image of the strategy, orchestrating schooling, with the associated tactics.  127  Figure 5.2 Orchestrating Schooling  Orchestrating their children’s schooling is active, hands-on, and time consuming for caregivers. When tactics for orchestrating schooling are not working, or when children enter a new grade, school, or relationship with a teacher, caregivers have to redouble their efforts and escalate to 24/7. Twenty-four/seven indicates they are spending all of their time on  128  stand-by without any respite, which reduces their time and energy for social relationships, paid employment, volunteering in their communities, and engaging in hobbies. Unsuccessful tactics for orchestrating schooling require them to intensify their strategies to fit in as parents and abandon any other activities. The time-consuming nature of orchestrating their children’s schooling is reflected in the paid employment status of the participants. One participant was employed full-time, while six participants were employed part-time outside the home. The participant who worked full time had a partner who worked flexible hours. She indicated that they always had one parent at home, in case they got called to the school. Four of the participants who worked part-time indicated that they either declined a promotion or reduced their working hours because of the full time nature of managing their children’s schooling. Three participants were part-time students at the time of the first interview; two of them during the course of the research had to quit or delay their studies. Seven participants were not employed outside the home. A participant, who describes being called in by the school during cycles where her child’s behavioural difficulties escalated, describes the effects of orchestrating schooling on her ability to work: I was offered a promotion and I had to turn it down. I have to work as part time as possible, but hold onto my benefits because the medication he’s on is so expensive (7.1, lines 69-71). A participant who was previously employed indicates that she had to give up previous paid positions as a result of the time commitment needed to manage her child’s schooling: I have to advocate so strongly for him at the school level that I have to give up work basically to get his needs met….I had a business…a flourishing business before I had  129  [him] and the business is now gone because that become my priority…right (4.1, lines 862-871). When caregivers perceive their children to be failing in school they also perceive themselves to be failing as parents. In addition to throttling up tactics for orchestrating schooling, they also direct their focus to regulating their relationships to the point necessary to stay intertwined so both their children and they can fit in. 5.6.1  Being on Stand-By  All caregivers use being on stand-by to orchestrate their children’s schooling. Caregivers have to be ready to intervene to protect their children from fallout arising from frequent medical concerns and their children’s behaviour, which can jeopardize their ability to be successful at school. Parents used the tactic, being on stand-by, to parachute in to take their children out of school when they got into difficulty. Caregivers (who are not on standby) are aware their children may be asked to physically leave the school if they demonstrate escalating ‘bad’ behaviours. Being on stand-by involves “increasing time being present at the school” and “scaling down other activities.” Child factors (i.e., the medical concerns and behaviours that result from prenatal exposure to alcohol) and school factors influence the amount of stand-by required, while caregiver factors (e.g., financial resources and relationship status) influence the ease or difficulty of being on stand-by. Child factors affect the amount of stand-by required for caregivers to orchestrate schooling so it does not fall apart and they can stay intertwined to fit in and maintain their relationships with their children. For many caregivers, regular trips to the physician or emergency ward of the hospital are part of their day-to-day lives. There is a  130  sense that they have to intervene quickly when they get called by the school. As one parent said: “when these children get sick, they get really sick.” Another caregiver reflects on the seriousness of her child’s medical condition which affects all aspects of her life with her son and necessitates her being on stand-by: There’s a lot of coordinating services. [My son] has chronic health issues that are related to his [rare medical condition]. He has to have a growth hormone injection daily….his body can stop producing all sorts of hormones so he has to go annually for tests to make sure he’s still producing other chemicals because that could shut down at any time (4.1., lines 843-851). For caregivers whose children experience frequent medical concerns associated with their exposure to alcohol, the intensity of being on stand-by is increased, which affects their ability to attend to self through working. Not working has implications for their efforts to be seen as “good parents” and have an identity beyond being a parent. A caregiver, whose child experienced frequent medical illnesses and mental health difficulties that became more evident over time, explains having to increase being on stand-by, which affects her abilities to find paid employment: And of course her lates and absences last year, through the roof. Through the roof. How am I supposed to look for a full-time job? I was getting called [by the school] in the middle of an interview. Who’s going to hire me? (5.1, lines 207-210). The unpredictable nature of the behavioural difficulties associated with FASD increases the amount of stand-by time required. Having children “falling apart” can happen very fast  131  because children with FASD have difficulty with behavioural regulation, which includes rapid changes in mood. Children will go from happiness to sadness or anger, without warning. Caregivers indicate that their children have strong and unexpected reactions to stimuli in the environment. When triggers and responses are unpredictable it means caregiver intervention is “needed when it is needed.” That makes it difficult, if not impossible, to anticipate when children’s behaviour will jeopardize their efforts to fit in to the point where they have to physically leave the school. If children are asked to leave the school, caregivers must throttle up or put more energy into regulating their relationships with their children and intertwining with their children. In the following quotation, a biological mother explains being on stand-by as a result of the unpredictable nature of the behaviours associated with FASD, which jeopardizes her efforts to fit her child in, with the potential result of not being in the school: R: Okay. So that’s part of something that I’m very interested in, too, because parents have talked to me about it. You might have a different experience but I’ve had parents who’ve told me having a child with FASD in the school, means that you kind of have to be on stand-by all the time. P: All the time!.... 24/7!....That phone better be working and if you leave the house you better have a cell phone because if that kid has an episode at school, you’ve got to be there immediately (12.1, lines 287-298). Caregivers throttle up being on stand-by depending on how evident their children’s behaviour and mental health difficulties become. When behavioural difficulties escalate to  132  the point where staying in the school is no longer an option, caregivers get called in to segregate their children: I’ll get a phone call that he’s missing, and you’ll find him under a table somewhere because a situation happened, and with his level of anxiety he doesn’t have the skills to be able to go through the whole process of “stop, wait, what happened, I feel this way, this is what I’m going to do about it.” So that is a safety issue to them, so then we have to come and get him (7.1, lines 55- 61). Taking their children out of school, through being on stand-by, prevents children from being excluded for longer periods of time which would undermine the long-term outcomes of success caregivers are striving for. Intervening when needed, through being on stand-by, also helps caregivers to be regarded as “good or responsible” parents. Where the school is unable to support children, through support workers or a lack of knowledge about FASD, caregivers have to increase the amount of stand-by time so they can be available at short notice: P: They just… yeah, Kindergarten, of all things. I was in shock. I’d just finished dropping him off, and the vice-principal called me on my cell and told me, “You’ve got to come and pick him up now.” And I’m like, “I just dropped him off, he’s supposed to be in school.” “Well, he’s not listening, and he’s not doing this, and he won’t stop laughing at us, and he thinks everything’s funny, and we can’t deal with it, so you’ve got to come and get him” (15.1, lines 88-95). Caregivers increase the amount of stand-by time by taking on volunteer positions at their children’s schools so that they are immediately available to intervene when their  133  children’s behaviours escalate. They volunteer for field trips, volunteer to be a playground supervisor, or help out in their children’s classrooms. Other caregivers linger around the school after drop-off time or stay in close proximity to the school just in case they need to go back in. An adoptive parent who turned down a promotion and works part-time so she can be on stand-by to reduce possible triggers that could jeopardize her child’s chances of fitting in said the following: The other thing is the field trips, I want to be able to go on them because I know how many triggers can happen, something’s new to him, and as much preparing as you can do you can’t prepare him for everything all the time. So I like to be able to go on field trips and I let them know when I’m available so that I can do that. Three afternoons a week at least if they were to phone me, I’m home. That’s great, I can come get him, I can come (7.1., lines 76-82). When caregivers scale down other activities in their lives to be on stand-by to support success for their children they do it at the cost of caring for self. Caregivers indicate they would prefer not to be on constant standby; therefore, they work hard on other tactics to support their children’s independence and stability, such as pitbulling and making connections. As one parent said: “It’s not that I really want to be on-call 24 hours, but where that helps the child is …the more consistency there is [through me being there], the less anxiety there is for her in the school environment” (16.1, lines 279-283). Because children with FASD have difficulty adapting to frequent changes in the educational environment it also increase the amount of stand-by required of caregivers. Almost all participants refer to high support staff turn-over as interfering with their children’s  134  routines. During cycles characterized by frequent changes, caregivers increase their stand-by to be able to step in and monitor for indicators of behaviour that suggest worsening situations. Change may result from chance (e.g., when a teacher goes on maternity leave or gets sick) or from staff turn-over caused by union rules (e.g., an assistant leaves and gets replaced by the person with the most seniority). Seven caregivers have children in the 11 to 12 year old range. Most of these caregivers indicate that the school environment becomes more unpredictable for older students, necessitating them to increase the amount of stand-by required. One parent said: “Now the 11-year- old… is now in middle school so now he has six teachers.... and some of them are substitutes” (9.1, lines 200-202). Another caregiver said: Well…I’m way more involved now…way more involved. As they got older I got more and more involved because there were more and more problems as far as the educational part of it went. Like the gap between what they can do and what the school would want them to do so I was more and more involved in more figuring out…(9.1, lines 117-122). Caregivers sometimes contribute to staff turnover: When caregivers rely too heavily on teachers’ assistants to regulate their children’s behaviours the teacher assistants get burned out. One participant, an important negative case, indicated that a lack of staff turn-over could also make orchestrating children’s schooling more difficult. When support staff members are burned out they become less motivated to try their best to help children to fit in. P: I found that after about two years people started becoming stale…no matter how skilled they were… the teaching assistants become stale. They’re not wanting to learn more.  135  R: Stale…what is stale? P: Stale in the sense that “Oh well, they’re never going to learn that” or they’re not willing to look at different things or working around the challenges (4.1, lines 703711). There are also conditions that reduce the amount of stand-by required of caregivers. Less stand-by time is required when children receive extra assistance in school as a result of meeting their district’s criteria for extra support, and the assistant is knowledgeable about FASD and can structure the environment to prevent children’s secondary disabilities from escalating. Under those conditions, caregivers do not need to be ready to parachute in to take their children out of school at any moment. Because children appear more autonomous caregivers can temporarily throttle down their tactics to orchestrate schooling to support intertwining to fit in. For caregivers without financial resources, being on constant stand-by is more difficult than it is for parents with financial resources. An unemployed biological mother explains how, faced with lack of understanding of FASD and a lack of resources from the school environment for her child, she increases her stand-by time to help alter the environment that triggers her child’s behaviour, thus, reducing her ability to engage in paid employment: So they moved her again. She couldn’t handle the noise. None of the chairs and desks have rubber balls on. So that’s another quest I’m on is to find used tennis balls to donate, and I will sit there and I will cut them and I will put them on the desks myself  136  if it’s going to make my daughter’s life easier, I will do it, right. If I could afford to go out and buy them, I would, right, but again that’s time that I spend. Do I want to go to work and make money and be able to take her to Disneyland? Hell yes. But instead I have to keep managing all this stuff, right. So where do I find the time to find a full time job and find tennis balls to keep her in school? And if I don’t keep her in school, how can I get a full time job? (5.1, lines 256-258). Cutting down on work to be on stand-by can jeopardize caregivers’ abilities to earn money to take care of their families and can make it more difficult to promote themselves as “good” or responsible parents. For single parents, stand-by time is more difficult. A single father describes how being on stand-by impacts his ability to find paid employment: R: I’m hearing parents saying to me, “I would like to work, but I can’t because I have to be on stand-by because the school can call me any time.” P: See, that’s the problem. R: So can you tell me just a bit more about that, in your experience? P: That’s the big problem being a single parent, man or woman. You can’t really have a steady job, or even a part time job. Like I said [my son], the two first years there I’d be there at least twelve to fifteen times out of the month to take him out of the classroom because he’s not behaving, he can’t handle it. The school or the special class, the one teacher would call and then tell me, “Well, he is having a real bad day today. Can you come and pick him up?” Now me, if I’d had a job, if I’ve got to do  137  that like I said fifteen times out of thirty days, my boss is just going to look at me, “Okay, you want your job or you…?” So I’m stuck right now (14.1, lines 43-57). Having a partner who is employed may soften the financial impact of orchestrating schooling through being on stand-by, however, there is a sense that one parent takes most of the responsibility of orchestrating for success for the child: R: So, being in a relationship is helpful when you’re a parent of a child with FASD? P: Yeah. It can be…but it can also be a lot harder because like I said, if the other parent doesn’t understand, sometimes it’s just easier that you do it on your own (12.2, 780-784). Even when caregivers’ work environments are flexible so they can be on stand-by and maintain a paid position there are financial implications. Consider the following description of the consequences of being on stand-by, given by one of the few participants able to keep a job: Your son did this. Is there any way [you can pick him up?]…. I’ve lucked out…I have a boss that understands that I have problems with my children and that there are other people at my work that can cover my shift. I lose out on money all the time (12.1, lines 313-316). Being on constant stand-by also affects caregivers’ mental well-being. Under conditions where children’s behaviours escalate or become more evident because of a lack of adequate support in the school system, caregivers experience stress which impacts all aspects of their  138  lives and well-being. A caregiver indicated she had to “quit for stress, because [she] was always at the school” (13.1, lines 30-35). When caregivers unsuccessfully use the tactic of being on stand-by, they have to engage in other tactics to orchestrate schooling and stay intertwined to fit in, or hit rock bottom where successful outcomes for their children and themselves are undermined. As indicated in the above quotation attending to other aspects of “self,” in this case through being gainfully employed, is also undermined. 5.6.2  Pitbulling  Caregivers also used the tactic pitbulling to orchestrate their children’s schooling. They described pitbulling as daily battles focused on managing their children’s schooling. I identified sub-tactics of pitbulling, namely standing firm and hauling in support, and identified conditions under which caregivers moderated their pitbulling actions by treading carefully. Caregivers carefully considered directing their time and energy towards standing firm, hauling in support, or treading carefully. Parents considered not only how their actions could contribute to success for their children, but also how their actions could potentially influence parents’ standing in the school system. Conditions, such as the availability of support, also influence how caregivers direct their actions and the kinds of pitbulling tactics they use. When caregivers pitbull, they battle for the kinds of environmental conditions that would enable children to regulate their own behaviours, for others to understand their children, and for support for their children. When they were pitbulling they were considering what they believed their children required to meet their educational and mental health needs.  139  Pitbulling captures the tenacious quality of caregivers’ interactions with school personnel. Caregivers try to ensure children get support and understanding, even when the school personnel view those elements as unnecessary or impossible. They push until they get what they believe their children need, keeping at it “even when it kills to do it,” and not accepting no for an answer. Through pitbulling, caregivers push back against conditions that make it more difficult for both themselves and their children to intertwine so that they can fit in. Battling for their children also helps them promote themselves as “good” or responsible parents. A caregiver explains pitbulling as follows: Don’t give up. Refuse to take “no” for an answer. Keep going until you can find someone that will help you. Because that’s what I do, right. They’re strapped budgetwise, I get that. There’s only so much they can do, right. But if you don’t do it then the child then feels you don’t care about them (5.1, lines 583-587). Standing firm happens when caregivers do not back down. They fight for what they believe is essential. In a sense, they put to one side their fears about negative reactions to them from school personnel. When they observe their children failing to fit in at school and to experience success, their fears for their children’s immediate and long-term well-being take centre stage. Standing firm takes a toll on caregivers because the tactic involves taking a stand against the school system and constantly seeking resources and support. At the same time, their children might be in a holding pattern at school where they are not fitting in, which means caregivers also have to direct more energy towards regulating the relationships with their children. Caregivers describe standing firm as going up against “red tape and rhetoric,” and “me against them.” Essentially, the time and energy involved in standing firm  140  and regulating the relationships with their children prevent caregivers from attending to other parts of their lives. The following quotation illustrates standing firm under conditions where an adoptive mother observes her child to be losing her identity: But when your child is isolated and isn’t allowed to play with the other children, and isn’t even allowed to use the same washroom as the other children, then the idea of minding your p’s and q’s and walking on egg-shells disappears. Because you are in a position where you either make a stand, or else your child is washed away (17.1, lines 186-190). Caregivers who perceive themselves as the kind of person that can stand firm and/or are knowledgeable about FASD are more likely to use standing firm as a tactic. Those who do not feel they can stand firm and/or are not as knowledgeable about FASD are more likely to use hauling in support from the “outside,” provided that support is available. When caregivers haul in support they involve others outside their children’s schools to serve as allies in orchestrating their children’s schooling to achieve success. Hauling in support helps caregivers avoid possible negative outcomes for themselves and their children; negative outcomes may arise when standing firm does not result in the kinds of school environments that would allow children to be more independent. Hauling in support was related to the level of resources caregivers had or how connected caregivers were to their community, or both. Outside support may be support from the district level (e.g. behavioural consultants), the provincial level (e.g. provincial consultants), the medical system (e.g. the child’s psychiatrist), key workers, or their communities. Caregivers can also use hauling in support as a tactic when they try standing firm and it does not work. Some caregivers decide  141  to haul in support even when they perceive themselves to be knowledgeable and able to stand firm. As one caregiver said, “It can be very intimidating to walk in and there might be fifteen of them and one of you, and it’s on their turf at their time” (8.1, lines 110-112). Because hauling in support takes time and planning caregivers are more likely to stand firm when the stakes are high and reaching their ideal outcomes are threatened; they are more likely to haul in support when the situations with their children’s schools are not posing such a dire threat to ideal outcomes. Hauling in support can be related to the level of resources caregivers have or how connected caregivers are to their community, or both. For caregivers living in a close-knit neighbourhood who are connected to their communities, hauling in support is easier because they perceive criteria for accessing support to be flexible in their community; they also have more long-term supportive connections to haul in to make pitbulling easier. For caregivers who are insiders to the educational or health care system, hauling in support is easier because they have knowledge about how to navigate different layers of the system to get support. When support is not available or caregivers do not perceive support to be meaningful, caregivers are more likely to use standing firm to stay intertwined to fit in. Pitbulling also affects caregivers’ attempts to promote themselves as “good” or responsible parents. Influences from school environments can increase the work required by caregivers to stand firm or haul in support. These can include teachers lacking information about how to best structure the classroom environment to maximize children’s chances for success or lack of sufficient resources in schools to support children’s success, in particular teaching support workers. A caregiver who hauled in support from the district administrator describes the environmental conditions that influenced her actions:  142  Come this year that SEA was put in the classroom to support their child, my child, plus three other students that get some resource support…I was concerned because my son’s supposed to get full-time support and there is only one person in the classroom, so how is it going to work? (4.1, lines 66-71). In the absence of help from the school, children’s behavioural difficulties become more pronounced; caregivers have to direct more time and energy towards regulating the relationship with their children through increasing their vigilance about changes they are observing in their children’s behaviour and shifting their expectations about short-term outcomes of success so they can stay intertwined to fit in. Whether children have received a diagnosis influences the educational environment and affects caregivers’ efforts to stand firm. Children who have not yet received a formal diagnosis, which would increase their likelihood of a designation as a child with special needs and supports being allocated by the school, require caregivers to increase their efforts to stand firm so success for their children and for them as a parent can be more likely. Without an assessment to back them up in their battle for support, caregivers find standing firm is more difficult. The assessment process can also help caregivers connect to some supports, which makes hauling in support easier. The converse situation with no diagnosis and no access to support undermines caregivers’ use of pitbulling. A foster mother described how not having had an assessment for her child made her efforts to pitbull more difficult: Oh, and part of the dilemma at that point was we did not have a diagnosis. So all we were dealing with was all of her other issues, there’s lots of them. You know, PTSD, OCD, ODD, possible ADHD. The standard throw it all on one plate. Although I had  143  felt from the very first time when I got her, I felt that there probably was some level of brain damage but that’s based on my experiences. So that was part of the dilemma was not having the fancy piece of paper that would allow or enable them to do anything other than what they were doing, which is a system failure (16.2, lines 620626). This caregiver also feels disregarded as a parent when, in the absence of having a “fancy piece of paper” or an assessment report, her input, in the form of standing firm, is not enough to influence the educational environment for her daughter. When caregivers’ use of tactics, like pitbulling, is undermined by educators, keeping up appearances and intertwining to fit in become more difficult. Helpful key workers can supplement caregivers’ knowledge so that they feel comfortable using them as a proxy or an ally in terms of standing firm for their children. Participants define helpful key workers as being knowledgeable about FASD, individualizing support provided to caregivers and their children, maintaining a trusting relationship, and being available immediately, or on a “9-1-1” basis when help is needed. Consider the following description from a caregiver who hauled in a key worker from her community to supplement her knowledge and be an ally to battle for support and understanding for her child: R: How does it help to take someone to a school based meeting?  144  P: Because sometimes I do not understand, and I look at her right away, and … then she knows and then she explains it to me later, or right there. And yeah, so I do find that it’s better to have somebody there with me (15.1, lines 203-209). Unhelpful key workers take a “brokerage and linkage approach,” by going through the motions of passing on information to caregivers; failing to invest in relationships with caregivers; requiring appointments to meet with caregivers; or breaking down trust with caregivers. Under those conditions, caregivers are less likely to haul key workers in for support. Lack of consistency in training is viewed by caregivers as producing unhelpful key workers. A biological mother described her perception of key worker training and her distancing from her key worker: Key workers, like I said, they were originally trained by [name of trainer], they all knew what it was about. Then the government decided they don’t want to pay [name of trainer] to do this anymore, in their infinite wisdom. Key workers can now train other people to be key workers. So whatever part of the training you heard, you showed up for, you got, you liked, you chose to practice, or had the money in your agency to do that part would be what you taught. Now you have a bunch of key workers, there’s no consistency, there’s no set of standards other than whatever they’ve been told they can do. (laughing). How is that helpful to me? (5.1, lines 12701286). In particular, if caregivers perceive key workers as threats to their ability to stay intertwined with their children (e.g., key workers may report conditions in the caregivers’  145  home environment to social services), they view them as unhelpful. The following example illustrates a situation where trust breaks down when a biological parent responds to a threat to label her as a bad or irresponsible parent, putting her relationships with her child in jeopardy: So the key worker had mentioned “Well, you know Child Care Protection might need to be called in.” I freaked! I freaked! …. After all I go through to…to advocate for her…to support her…to find resources…all the stuff I do and you’re going to report me because I have boxes. “Well…you know visually stimulating environments aren’t good for children with FASD and you of all people should know and you’ve been in a documentary and you go to conferences and you have a website and you…you…you…” About me right. And it was like she was attacking me and I was just like…you’re supposed to support me (5.2, lines 65-74). Caregivers have to dial down their pitbulling and focus more on how they come across as parents when they are worried about jeopardizing their relationships with teachers and other staff and about undermining their efforts to help their children achieve success and intertwine to fit in. To dial down pitbulling or tread carefully, caregivers pull back and analyze their acts and the anticipated outcomes of their acts on others. They reduce the level of standing firm and feed that back in. There is a fine line between pitbulling and being seen as a “problem parent,” which makes it more difficult for caregivers to keep up appearances and stay intertwined with their children. In the following quotation, treading carefully enables this caregiver to be viewed favourably by the school:  146  Well it made me realize very quickly that I had almost a full-time advocacy role, which was really not what I had hoped for. And in many ways, I suppose, it put me in the position, at least I felt, of being kind of the parent who everybody walks on their tippy toes …. as soon as I’m around. And so I try very much to counterbalance that .…(17.1., lines 115-120). Being an insider to the education system made it more likely that caregivers would moderate pitbulling. The four caregivers who were or are “insiders” (had worked or are working in education or health) emphasize that they walk a particularly fine line. They use pitbulling to promote success for their children but do not “rock the boat” to the point where they are shunned or ignored by the system. They use language to soften their advocacy and education messages. An insider to the education system explained how she used language to soften her message to the school: So if a child has an aide they can have anywhere between six hours and fifteen hours. Asking questions like that … you know, at these meetings, to the resource teacher, “Well how did you determine how many hours my child should get? What made you give them 12 hours instead of 15 or instead of six? Can you help me understand that? (8.1., lines 262-267). Another insider who made comments about her difficult position as an employee and parent in the school district explained treading carefully to pitbull for support:  147  And I explained the whole thing to them around getting caught in the cycle, right. So I said, “What can we do to facilitate it looking different so that we’re not just jumping back on the same merry-go-round? (8.1, lines 1618-1621). When standing firm, hauling in support, or treading carefully do not result in understanding and the kinds of environmental conditions that would enable children to regulate their own behaviours caregivers have to engage in other tactics to stay intertwined to fit in, or hit rock bottom where successful outcomes for their children and themselves are undermined. Pitbulling, together with other tactics, can also lead to changes in environmental conditions that make it more likely for children to be more independent and successful and for caregivers to feel like “good” and responsible parents and enter times of respite. 5.6.3  Cultivating Connections  Caregivers use cultivating connections as another tactic to orchestrate schooling or build relationships over time with others at their children’s schools and in their communities. They build relationships to promote academic and social success for their children. Caregivers drop in at the school, make sure they encourage teachers, volunteer, and attend school-based activities and programs to cultivate connections with teachers and other school personnel. Cultivating connections increases trust from school-based personnel for caregivers and empathy and understanding for children. Caregivers who cultivate connections believe it makes teachers’ expectations more reasonable and adaptations more individualized for their children, leading to increased chances of academic success. When caregivers were cultivating connections they were more likely to overcome barriers (i.e., lack of service and support) posed by a lack of assessment or diagnoses for their children. Ultimately, cultivating  148  connections is about creating a safe space where children are welcomed and wanted and caregivers are respected as experts on their children. An adoptive parent described cultivating connections: P: And I think, certainly after the first principal left, that I developed a really good relationship with the school. R: Was that something that you worked on … P: Absolutely. I worked on it, and I worked really hard (17.1., lines 206-211). A foster parent explains how cultivating connections creates space where success will be more likely for her child: I almost made sure I made friends with the teachers…They knew my name…They knew my number and they had an understanding of what [my] child had been through and what limitations they had so that they could kind of work with it, so they wouldn’t criticize…over criticize or have expectations that were ridiculously high and so they would lower the expectations a little bit…not so much around the behaviour stuff but maybe around the workload and around their listening skills, their ability to stay on-task and to concentrate (9.1, lines 39-47). School policies influence caregivers’ attempts to build connections. Caregivers describe schools as having open or closed door policies. Welcoming and “open door” schools make cultivating connections to promote success for children easier. Caregivers feel more respect and feel they can direct less energy towards keeping up appearances as a parent.  149  Cultivating connections provides allies to haul in to provide support as part of pitbulling. A grandmother explains her ability to cultivate a connection with her child’s principal: I saw the principal… like I walked [my grandson] to school every day. And I had a dog… and that dog was always allowed in the school. The kids loved that dog, and I would take him in and we’d go in the principal’s office …. you know, about once a week we would talk…. I always was in close contact with her, the principal, and I even phoned her about a month ago …. Principals don’t stay very long at a school, so she was transferred… after [my grandson] was there she was transferred and I called her and I told her what [he] was up to now…. (6.1, lines 539-561). When caregivers are insiders to the education system (i.e., when they work or have worked in a professional capacity in the education system), building connections to promote success for their children is easier. They can use their insider knowledge to identify where to invest their time and energy to build connections. Consider the following quotation from an adoptive mother who also works within the school system: And all schools are not created equal, it’s really important to know who is who and who the players are and what is their pedagogy, what’s their understanding of FASD, what is their understanding of mental health issues, and how are we going to work together (8.1, lines 232-236). When caregivers are insiders they know how to position themselves and use language strategically to prevent teachers from viewing them as “problem” parents. A caregiver who  150  worked in the school system explained how she used language strategically to cultivate the kind of relationship with teachers that would allow her to promote success for her child: And yah, a lot of times they do try to cut and paste [the IEP] from the year before, and then you want to respectfully talk around that. A lot of times the language they use is very ambiguous, so, “Can you help me understand what this looks like?” or “Where’s the evidence for this?” or “Is this a realistic goal, given what we know about the child?” So, yah (8.1, lines 162-168). While having access to insider information and language associated with the education system makes it easier for participants to position themselves and use language in a strategic way, working in the system is not a pre-condition for using language strategically. Theoretical sampling indicated that outsiders were also able to employ this tactic, provided that they were connected to knowledgeable support people who gave them access to inside knowledge and language they needed to advocate effectively. In schools with a “closed door policy,” caregivers feel unwelcome to connect with teachers and other school-based personnel, outside of typical structures that exist for parentteacher contact. In those schools, cultivating connections to promote success for children is more difficult. A change in policy from one year to the next makes it difficult for a caregiver to build a relationship with her child’s teacher: The whole sense of the school has changed this year. Last year we were allowed to go in to meet our students. At the classroom this year parents are not allowed in the school to drop off or pick up…. it’s school wide. And I think it’s because they  151  just…you know…I think it’s because the teachers didn’t necessarily want to have to talk to parents all the time….(4.1, lines 378-386). Under “closed door” conditions, parents find it difficult to cultivate connections and feel less acknowledged and respected as experts on their children. Those conditions increase the energy they devote to tactics to keep up appearances so they can intertwine with their children and fit in as parents. Regulating the relationship with their children is also more difficult when, under closed door conditions, parents do not have the kind of information that will allow them to make thoughtful decisions (e.g., about being more involved or more distant) so they can promote children’s independence safely and both they and their children can fit in. Caregivers’ behaviours can contribute to being shunned by the school. Data from document analysis (i.e., written correspondence between a principal and a caregiver) indicate that school personnel discourage caregivers from connecting outside the usual communication structures when the caregiver is seen as a “problem parent” rather than an ally. Being shunned by the school makes it almost impossible for caregivers to have access to the information they need to direct their energy appropriately. Caregivers also cultivate connections with community members. Staying connected with others who have knowledge of FASD and understand the nature of FASD makes actively managing children’s schooling easier. Caregivers gain access to helpful resources and learn from others’ tactics how to promote success for their children. Participants, who live in a setting that has been portrayed over the long-term as a community of people living in poverty and experiencing marginalization, indicate they trust knowledgeable professionals  152  in their community. They refer to trusting relationships with workers at their children’s daycare centres, personnel at community centres, their children’s after-school programs, and their “friendly neighbourhood doctor.” They also trust support group members who have been involved in their lives. Easy access to trustworthy and knowledgeable long-term connections and supports and flexible criteria for accessing support in their community distinguished caregivers from this community. Trusted allies help caregivers by taking them to assessment centres, attending school and assessment meetings, and helping them access valuable resources: One of the girls [from the drop-in centre] drove us [to the assessment] out there and she came to pick us up. That’s what I love about all these girls up here…they help the old when they can…you know.… I said I want the school to also know that she’s FASD and she said, “I’ll make copies of this and bring it up there” (3.1., lines 316319; 333-335). In trusting relationships, caregivers feel less blamed and view the bar for presenting themselves as “good” or responsible parents as set lower, which aids their efforts to stay intertwined to fit in. Cultivating connections to promote academic and social success for their children takes much time and energy; it comes at the expense of attending to other parts of caregivers’ lives. “Open door” policies at schools and access to community connections and supports make it easier for caregivers to build connections that allow them to move closer to the ideal long-term outcomes of success and happiness for their children and themselves. “Closed door” policies in schools, which may result from caregiver action, make it more difficult for  153  caregivers to cultivate the kind of trusted connections that help them stay intertwined to fit in. Because caregivers feel unacknowledged and disrespected as parents under closed door conditions, they also have to direct more energy towards tactics that help them keep up appearances. 5.6.4  Anticipating Difficulties  Caregivers keep their children’s difficulties from escalating at school and their relationships with their children stable by anticipating difficulties. Anticipating difficulties that can jeopardize their children’s success in school and could make intertwining more difficult has most caregivers working hard to set a positive tone in the morning and some caregivers being pro-active by setting up back-up plans at school to prevent difficulties from arising. Anticipating difficulties is intended by caregivers to increase children’s success at school and increase the likelihood that their children would fit in. In cycles where difficulties are anticipated to escalate, caregivers direct more energy to regulating the relationships with their children by observing behaviour closely and being proactive. A caregiver describes setting a positive tone in the morning: I will tell him a joke on the way to school, I will tell him something so much fun we’re going to do. Like, because if he is in the van and we start talking about something negative and he’s upset, that’s going to carry through (7.1, lines 147-150). Setting a positive tone in the morning is difficult, stressful, and particularly draining in situations where caregivers have other school-aged children to manage and their attempts are unsuccessful. Caregivers have to figure out how their children will react, choose their actions  154  and words carefully, be one step ahead, expect things to go off-track, and plan their next moves in advance. When they are successful their children start the day at school on a positive note and caregivers feel more positive about themselves as parents. Anticipating difficulties that derail their children’s chances for success in school leads some caregivers to take a pro-active approach by setting up back-up plans at school. Caregivers make use of existing structures such as the Individual Education Plan (IEP) process or help set up safety plans at their children’s schools. Not only do caregivers’ proactive efforts aim to promote success for their children but also the tactic helps them to be viewed as “good” parents. Caregivers define the IEP process as meaningful when goals for their children are focused, specific, and individualized and include both weaknesses and strengths. They find it particularly helpful when the process involves frequent consultation among themselves, teachers, and other staff. Frequent consultations support caregivers feeling acknowledged as experts on their children; being regarded as experts helps them to keep up appearances as well as stay informed to regulate relationships. Under those conditions, staying intertwined with their children to fit in is easier. A caregiver describes a cycle where she was “used as a resource” by the school: P: I was more and more involved in sitting down with resource teachers and going ‘Okay…how are we going to make this work?’ And them working with me. I found they always worked very, very well with me as far as being willing to work as a team. R: What does it look like when they…in your experience what does it look like when they did use you as a resource?  155  P: It looks like lots of telephone calls or e-mails or meetings, sitting down talking about the problems (9.1, lines 132-138). When the IEP process is considered to be lacking in meaning caregivers will use pitbulling, being on standby, and setting a positive tone in the morning but they will not take a pro-active approach when they anticipate difficulties with the school. For them, the IEP process is not meaningful when the IEP goals are “copied and pasted” from other or older documents, too general to assist in promoting success for their children, and, especially, not involving consultation in a meaningful way. Under those circumstances, they regard the creation of the IEP as a “token process.” The IEP process becomes one more thing they “have to do,” adding to the full time nature of managing their children’s schooling. This participant does not use a pro-active approach: I’m still fighting the fight with the principal, and I have a new key worker now who is going to come in and do this one with me. But again, it’s almost the end of the year so we are [setting goals] for next year (5.1 lines 237-243). Taking a pro-active approach involved more engagement with the school over time, which helped caregivers cultivate connections with school personnel, which, in turn, assisted caregivers with orchestrating schooling, regulating their relationships with their children, keeping up their appearance as “good” parents, and staying intertwined with their children to fit in. Children’s transitions (e.g., transitioning into a new grade, transitioning from a special program back into a regular program, or moving into secondary school) require  156  caregivers to be alert, anticipating difficulties. During an interview in the summer, a caregiver anticipated difficulties arising from her child’s transition from a special program into a regular program. She describes considering a back-up plan to promote success for her child and herself and contribute to staying intertwined to fit: The 11-year-old will go back to the same school that she’s always been in. The only difference is instead of going to the family class and getting treats for doing her homework and behaviour, she’ll be going to regular class and there won’t be the treats and there won’t be the rewards….So that’s going to be interesting to see how long it will last and when she starts writing swear words on her homework to the teacher….I think it’s going to be very hard for her….we have the worker coming in…We are starting early now…to schedule her. And get her used to what consequences are for her actions (12.2, lines 277-285; 301-306). During transitions, caregivers have increased concern about their children’s learning. They anticipate difficulty keeping up with peers. In particular, the looming transition from primary to secondary school intensified caregivers’ anticipation of academic difficulties. Parents with children getting ready for secondary school identify gaps in children’s academic knowledge and between children’s chronological age and their coping skills as reasons for anticipating difficulties. There has been…some academic progress given the homework…given the work she has at home and at school…That still doesn’t mean that they’re anywhere near their ability at this time…where they should be…not even close. In fact, we’re really concerned for my daughter because …she’s going to end up going to junior high….  157  That will be disastrous. Absolutely disastrous. She has no foundation…academic foundation, really (11.1, lines 357-364). To summarize, orchestrating schooling is a strategy consisting of tactics, specifically, being on stand-by, pitbulling, cultivating connections, and anticipating difficulties. Caregivers use orchestrating schooling to promote their children’s academic and social success (help them to fit in). If the strategy is successful, it can also help contribute to educators’ views of them as “good” parents. The caregivers throttle the tactics up or down depending on their children’s behaviour and the amount of support and modifications made by the school system to support their children. Simultaneously, caregivers are using other tactics to keep up appearances so they can be regarded as good and successful parents. It is difficult for them to regulate their relationships with their children by putting in a lot of time and energy to stay intertwined (together) if neither their children nor the caregivers are fitting in to the school system. Children’s behaviour, caregivers’ availability, modifications to the school environment, support from teachers, and availability of support workers are just some of the conditions that influence the amount of energy devoted to orchestrating schooling and types of tactics used. Using tactics to orchestrate schooling and caregivers’ use of tactics for keeping up appearances contribute to hitting rock bottom or reaching islands of calm, which have short-term outcomes associated with them. 5.7  Keeping Up Appearances Keeping up appearances is a strategy that caregivers use to look like a “good” or  responsible parent so they can fit in with other parents and the school system while attempting to stay intertwined with their children. To promote being viewed as a “good”  158  parent, caregivers’ efforts aimed at overcoming their children’s challenges allow them to fit in as parents. Caregivers indicate that presenting themselves as “good” or responsible parents is an ongoing challenge. Their children’s disorders are invisible, their behavioural difficulties are unpredictable, and their unexpected strengths and weaknesses make it hard for others to set realistic expectations. Caregivers are often blamed for their children’s behaviours, regardless of whether their status includes being a biological parent who “caused” children’s brain damage. An adoptive parent said the following: I think that not being judged is huge with FASD…not only as a parent and whether you did [the drinking] or not…whether you exposed them to the alcohol, but the behaviours that happen and the bizarre things that can come up….(4.1, lines 762767). Participants try to keep up appearances by employing the tactics of sharing information, reframing, and redefining self, while they simultaneously orchestrate their children’s schooling and regulate their relationships with their children. Figure 5.3 provides a visual image of the strategy, keeping up appearances, with its tactics.  159  Figure 5.3 Keeping up Appearances  One participant, a negative case, explains about not being concerned about keeping up appearances. Because of her history in her community, presenting herself as a “good” and responsible parent was not within her reach. Rather than putting her energy into an image  160  that was not credible, she opted out of keeping up appearances and focused on sustaining her relationship with her child at that particular point in time: I’ll call somebody and say “I have lost my freakin lid…you had better get over here. I’m not dealing with them anymore.” I’ll call the social worker. I’ll say “that’s it…I’m spanking the kids. You can send whoever you want later today but they’re getting a spanking right now” and I hang up the phone. R: And then what happens? P: She calls back: “Why are you spanking them for? What kind of help do you do? What do you need? What resources are going to help you with this?” And I’ll say, “Well…get them into swimming class. The boys are climbing up my walls…I can’t handle it. He needs a Jungle Gym.” R: Does it happen? P: Yes…she got me a preservation worker who’s getting me the information that I don’t have time to go look for. R: What’s a preservation worker? P: To preserve your family…. Just as it sounds…they preserve your family. They keep your family together (12.2, lines 690-714).  161  Using tactics to keep up appearances so caregivers can stay intertwined and fit in as parents is hard work, which takes a toll on their physical and mental well-being. The work is especially hard when caregivers receive constant negative feedback for their efforts. It is more difficult to share information, reframe self, and redefine self under conditions of poverty and stigma. Caregivers living in poverty are more likely to be blamed than caregivers with more financial resources when their children don’t fit in. Parents find it more difficult when resources are limited to promote themselves as “good” parents. Caregivers who lack financial resources have more difficulty paying private health professionals; those professionals might be more likely than public teams to give a less stigmatized diagnosis, such as ADHD, or obtain individualized support for their children. Being unemployed and living in poverty creates challenges for caregivers to attend meetings at their children’s schools. An unemployed mother who travels across town by bus to attend courses to upgrade her employment skills describes being unable to attend after school meetings with her child’s teacher: “The teacher was telling me just get yourself to come by and see me and talk about the kids’ progress. It’s not happening” (2.1, lines 489-490). 5.7.1  Sharing Information  All caregivers use deliberate sharing of information as a tactic to keep up appearances. In some cycles of intertwining to fit in, keeping up appearances or being perceived as “good” parents is contingent on sharing minimal information or even withholding information from the school. Some biological parents decide to withhold some information, such as the birth history, by only releasing part of an outside assessment report to the school or withholding the assessment report. They regard their control of information  162  as reducing the shame and stigma attached to FASD or assisting them to keep up appearances. Under those conditions, they are more likely to be viewed as parents who are good and responsible. To promote being seen as a “good” parent, caregivers carefully control the amount of information they share with school personnel and outside professionals. They control the information they share about their children’s birth histories, results of outside assessments, and their own and their children’s difficulties so they can obtain help for their children and promote their appearance as “good” parents. When caregivers provide explanations for their children’s behaviours, they are less likely to be blamed as “bad” parents. A foster parent said the following: I do it for myself…I do tend to play on the sympathies of the teachers and I do share a little bit of the kids’ life story…I try to stay within parameters of keeping the kids’ privacy but at the same time I want them to realize how damaged these children are and have some sort of…you know…compassion for them so that they’re not just another kid…. (9.1, lines 398-404). Because I interviewed participants over time, I observed some participants choosing to share information and others choosing to withhold it. Caregivers do not always control information using the same approach; they vary the amount of information they share over time to make sure they keep up appearances and stay intertwined with their children to fit in. Sharing information with the school generally helps caregivers promote their image as “good” parents and was used most frequently by caregivers. Caregivers want to avoid being blamed by teachers and others in the educational environment when their children  163  struggle or have problems with their behaviour. Because children with FASD“talk the talk, but don’t walk the walk,” meaning their verbal abilities often mask their poor comprehension, teachers who do not have specific knowledge of FASD find it hard to understand why children behave inconsistently. Sharing information is particularly challenging for biological parents, who struggle with decisions to release personal information about children’s alcohol exposure to the school, because such information is inconsistent with their own and others’ definitions of “good” and responsible parents. Purposefully sharing information with professionals outside the school helps caregivers manage others’ views of them. Three caregivers who were involved with social services at the time of the interviews indicated that carefully sharing information about their own well-being and what is going on in family life with social workers resulted in them being regarded as “trustworthy.” Relationships with social workers characterized by trust are more likely to lead to supports being available to facilitate children’s success and to help caregivers stay intertwined with children. It is more difficult to purposefully manage sharing information when participants who identify themselves as aboriginal perceive a “double stigma” as members of the Aboriginal community and biological parents of children with FASD. Having labels attached to children, by virtue of their ethnicity, complicates managing the flow of information to schools. When deciding whether to share information caregivers have to carefully consider potential further stigmatization for their children while reducing the likelihood of being viewed as irresponsible parents because they withhold information from school personnel.  164  P: It used to be said that if you were Native, you’ll be diagnosed with FASD. If you are white, you will be diagnosed with ADHD. R: I’ve heard that. P: For God forbid if a white woman drank. Only Natives are drunks! R: So there’s that stigma…that patronizing… P: Yeah! So if you get adults with ADHD, it’s a good possibility that they’re really FASD, especially if they’re white. And it’s a good possibility that a lot of the children that have been diagnosed with FASD…it’s a good possibility that their parents really didn’t drank. R: It’s ADHD. P: But way back in the day and you were a Native, your child was FASD…plain and simple. And if they didn’t have any facial features, then they said you were a bad parent. This is because you taught your children wrong. R: So either way, you can’t win (12.1, lines 377-392). Being connected to support is a condition that helps biological caregivers overcome stigma and purposefully share information with the school so they can keep up appearances and stay intertwined to fit in. When caregivers are connected to people who they trust, affirm them as parents, and help with the flow of information, keeping up appearances is easier.  165  Well, the key worker has been helpful. I find her helpful as a resource for ideas but also just as somebody to talk to and bounce things off of and hear how I’m doing…you know (9.1, lines 251-255). Caregivers connected to supports were more likely to be open about their children’s diagnostic status. Support groups encouraged the caregivers to share information with schools and praised them when they shared potentially beneficial information. When caregivers were praised for their actions to support their children their positive feelings about themselves as parents increased and they felt they were keeping up appearances. Caregivers also share information with respite care providers to make it possible for them to take time-out to replenish their energy. When respite care providers lack knowledge and understanding of FASD caregivers may have to initially increase the time they spend educating them about FASD, so they can take time out. They have to invest energy now to be able to replenish their energy later: I have more of a luxury in that I do have some funding available to have support workers so that I could…I can take a break, or I can work, or you know, it’s my choice to do that. But then the dilemma around that is…or that I’ve found is that finding people that have the skill set or the ability to acquire it through me training them in terms of how to manage what might come up with this child and how to navigate through the time that you spend with her, because it’s not typical. I can’t bring in the girl next door to babysit, so to speak.…. (16.1, lines 177-185).  166  Caregivers also view sharing information about assessments with the school as increasing their children’s risk of being stigmatized, which in turn will undermine their attempts to orchestrate schooling to promote social and academic success for their children. Caregivers, who perceive special education criteria as ambiguous and who view identification of their child as a child with special needs as unhelpful, are more likely to withhold information. Also, under conditions where their willingness to share information during previous cycles or with older children did not result in support for their children, caregivers were more likely to withhold information from the school. For example, a biological parent who had several of her children assessed decided not to have her youngest child assessed prior to entering kindergarten because she wanted to see if he could “get by” without engaging in the intrusive diagnostic process. 5.7.2  Reframing  When participants are faced with their children not fitting in, positioning themselves as “good” or responsible parents is more difficult. For biological parents especially, positive feelings about their parenting decrease and their grief, layered with guilt associated with the affected child, increases. Caregivers use reframing as a strategy to keep up appearances, given the nature of cycles of intertwining to fit in. Reframing involves caregivers changing the meaning they attach to the behaviours of others, including their children. In general, caregivers reframe relationships with professionals and their children’s behaviour. Biological parents reframe children’s assessment processes. When caregivers judge their children to be falling behind academically and doing poorly in social interactions some choose to disengage from the school and potentially  167  helpful supports to protect their efforts to keep up appearances. Other caregivers reframe their relationships by moving from viewing teachers as barriers to success for themselves and their children to viewing them as potential allies. Reframing teachers as allies makes it easier for parents to stay engaged with the school, attend meetings and have conversations about their children. A caregiver who previously disengaged from the school describes reframing her relationship with her child’s teacher: Anyway, the last talk we had…it just seemed to be enough. It just felt really good. Suddenly…you know… I’m wanting to accommodate her…she’s accommodating me…she’s going to phone me if she feels that there’s something wrong (11.1, lines 314-318). Caregivers also reframe relationships with others in power positions (e.g., social workers or principals) so they don’t jeopardize their efforts to fit in and fit their children in. Moving from viewing a social worker or key worker as “invading their privacy” to being helpful and supportive helps caregivers stay engaged so they can employ their other tactics to intertwine to fit in. It also prevents caregivers from being regarded as uncooperative. A participant reframed her relationship with her social worker so she could act more like a responsible parent. You know when I started coming to the FASD groups and started realizing you know …my son needs a lot of help, I can’t keep being rude to the social workers…I can’t keep pushing people away…. (12.2, lines 517-521).  168  Belonging to a support group creates conditions that facilitate keeping up appearances through reframing. Support groups provide caregivers with opportunities to reflect on themselves and their relationships with others; caregivers learn from others about how to project a positive parenting image. So I had said to [the group members] “Well you know, instead of saying a label, say, “my child is doing this and that and that, and I really need help. I don’t know what to do anymore.’ And sound desperate.” Because it’s Family Services, that’s probably going to help (7.1, lines 390-393). Almost all of the biological parents reframed the assessment process to minimize potential threats to their image as “good and responsible” parents by themselves and others. Data from interviews and document analysis and my experience in schools sensitized me to differences in implementation of policies from school to school, even when children qualify for extra assistance for their chronic health conditions. The data also sensitized me to imprecise criteria for deciding when children receive supports. The diagnostic process for children presented all biological parents with challenges in promoting their image as “good” and responsible parents. Reframing the diagnostic process from an invasive process that undermined keeping up appearances as a “good” parent to a positive and helpful process increased the likelihood that caregivers would pursue a diagnosis for their children. They temporarily sacrificed their image as “good” and responsible parents for the longer-term good of their children, which in the end would reflect positively on caregivers. Engaging with the diagnostic process garnered affirmation from physicians, key workers, and others in  169  their communities for acting like a responsible parent. Parents can begin by framing the process negatively. So we go there at 8:30 and the child goes separate from you and I was like…it was emotional because he asked “How long did you drink? What did you do?” Personal, opinionated questions they asked me …. (1.1, lines 620-626). A biological mother then describes reframing the process positively. I need support for my daughter…she’s going to learn…she’s going to have a heck of a time, I’m thinking to myself, but not look at [the process] as a negative thing but as a positive thing, so that I can learn as well and learn with her…yeah…so that’s how it worked out to be (1.1, lines 482-486). Being confronted with the permanent nature of their children’s brain damage due to exposure to alcohol and considering their potential contribution motivates caregivers to reframe their children’s behaviour. They might emphasize genetic or environmental contributions to their children’s conditions and deemphasize the contributions of prenatal exposure to alcohol: He is Attention Deficit Disorder, which some of it comes from being FASD, but on his report it says severely because he also comes by the ADHD naturally. So even if I hadn’t drank, my son would still have problems…. (12.2, lines 147-150). Reframing their children’s behaviours and emphasizing factors other than prenatal exposure to alcohol (e.g., other medical conditions or the influence of siblings) helps caregivers exercise agency and employ tactics they need to keep up appearances, continue orchestrating  170  their children’s schooling, and stay intertwined with their children to fit in. For biological caregivers, reframing children’s behaviours minimizes guilt. 5.7.3  Redefining Self  A third tactic caregivers use to keep up appearances so they can stay intertwined to fit in is redefining themselves. Redefining themselves involves reflecting on themselves and changing their identities. A biological mother captures the consistent effort that goes into redefining self to promote an image of a “good” parent and avoid “hitting rock bottom:” And I only do it [the hard work] because if I fall off the track, then I get like emotional and miserable. If I walked around with a smile on my face all day, it’d hurt. I mean…all day! Pretending to be somebody I’m not….I have to do what is going to make my parenting easier on myself because if I’m…like I said, if I walked around like this I wouldn’t be able to cope…I wouldn’t. I’d be miserable, I’d be upset, I can’t do this…I give up … (1.1, lines 1054-1057; 1115-1120). Under conditions where children’s behavioural difficulties escalate to the point where children have to leave the school or children experience frequent medical illnesses associated with FASD, children might stay out of school for significant amounts of time. Having children out of school interferes with caregivers’ presentation of themselves as being “like” other parents. They have to direct most of their energy and time towards regulating their relationships with their children to stay intertwined to fit in. Caregivers spend significant amounts of time teaching their children when they are not in school. The injection of time and energy to regulating their relationships with their  171  children to try to change their children’s behaviour can contribute to distancing themselves from others, exacerbated by others’ lack of understanding of FASD. Being distant and different from others can result in caregivers reflecting on themselves and redefining their identities from someone who is “so alone” to “someone who “likes to be alone,” is “not the group type,” or is the “do-it yourself kind of person.” Redefining themselves helps prevent caregivers from hitting rock bottom and moving from being disengaged to being cut off from others. When children spend considerable amounts of time outside of school caregivers might redefine themselves as “teachers,” an identity that goes above and beyond the identity of teacher taken on by most parents of typical children. Some caregivers redefine themselves as their children’s teachers during prolonged periods of time with their children at home; they spend hours teaching their children academic and life skills at home and take pride when they see their efforts paying off: Like with all the work I do with her and them, they have to do things neatly. I don’t accept all this scribbling and stuff. … Anyway…when this stuff happened in February and I said I was going to keep her home from school, she was home for two or three days and I started her in writing. She’s becoming a beautiful writer because I’ve given her my time to teach her and her teacher, ‘Oh! You’ve got such beautiful writing.’ She never started her learning that and she didn’t give her the chance…. (11.1, lines 510-524). Redefining themselves as their children’s teachers helps caregivers promote their image as “good” and responsible parents.  172  When caregivers redefine themselves as teachers the time consuming nature of managing their children’s schooling and regulating their relationships with their children, all at the expense of attending to other aspects of self, is more acceptable. Reframing supports some of the other tactics caregivers use to stay intertwined with their children. They also feel they are making progress towards the ideal outcomes for which they are striving. Biological mothers frequently redefine themselves as people who “made mistakes in the past” and “having come a long way.” Caregivers redefine themselves by putting “irresponsible” behaviour behind them. A mother redefines herself by saying: “I was drug addict and I will never let anything control my life or take over it” (12.1, lines 656-657). Redefining self in a positive way is facilitated by available support which provides caregivers with opportunities to reflect on themselves. In the presence of others who understand the nature of FASD and refrain from attaching blame, caregivers can redefine themselves as “good” more easily and feel that image is reflected back to them. Support groups are a place where caregivers connect with other parents of children with FASD. The groups support them to let down their guards temporarily. A caregiver who regularly attends a support group in her community describes the support group as finding a place where she can fit in as a parent: “We socialize with parents that has the same issue and we share it and we have that delicate moment that we share amongst us” (2.1, lines 354-356). A biological caregiver also linked regular attendance at a support group with redefining herself as “responsible” and “confident:”  173  It gives me the comfort, just being there [at the group] and I feel confident, dealing with everyday life with me and my family. It makes me more confident. Yeah…I’m doing the right thing for my kids actually (2.1 531-534). Support group longevity, with high levels of trust amongst group members and skilled and knowledgeable facilitators, is valued by caregivers. Support groups that are easily accessible (i.e., in close proximity to where the caregiver lives) and with childcare provided for the child or younger siblings make it possible for caregivers with limited resources to have space to reflect on themselves and redefine themselves in positive ways. In the presence of other caregivers who understand FASD and under conditions of growing trust, caregivers have opportunities to change their identities in ways that assist them in intertwining to fit in. One caregiver (a negative case) indicated being connected to a support group was unhelpful, in part, because it added to the stress of keeping up appearances. She felt set apart from other caregivers when she could not attend the group regularly because the group was not close by and offered no child care. The mother could not rely on extended family to provide childcare because the extended family members lacked knowledge and understanding of FASD. Having group attendance available but blocked by barriers prevented her from redefining herself as a “good” parent. Support around redefining oneself as a “good” parent can arise from connections to a go-to-person. A go-to-person is someone who “has their back,” is “in their camp,” and is “listening,” “believing,” “getting it” and “knowing the history.” Go-to-people “keep you going” and “are there when you need help” because they are someone the caregiver has learned to trust over time. Several participants indicated that their go-to- person often stayed  174  in their lives and affirmed them as “good” parents. Being affirmed makes redefining yourself easier. Some participants identified the go-to- person as the principal or vice-principal at their children’s schools. An adoptive mother, who had been labeled negatively by school personnel, describes being affirmed as a good parent by her go-to-person which helps her redefine herself: She knew me and I gained a relationship prior to going into the school system with her and when I told her that …the principal had dismissed me as an emotional parent….I said, ‘You know, you know me,’ and I said, ‘Yes, I was emotional and I was in tears but my son was being bullied and was being targeted and I don’t know why when I’m tearful about that… And she said, “Well…you’re not an emotional parent…. I know who you are….” (4.1 lines 434-440). Conditions where caregivers receive consistent negative messages from schools, especially when not connected to regular supports where they are affirmed as “good” parents, create difficulty for parents to redefine themselves positively. Those parents may disengage from the school: And every day that I pick him up… he has a communication book so that they can let me know how his day went. And it gets really frustrating because it’s not just… it’s every single little thing that he’s done is in there, and it gets… the stress is just like… to myself is like…. So now I’ve taken a step back (7.1, 120-124). Receiving negative feedback as a parent, in spite of throttling up other tactics for keeping up appearances, can move caregivers into rock bottom where they temporarily give up on trying  175  to present themselves as “good” parents and orchestrating their children’s schooling. Conversely, when caregivers can redefine themselves positively they are able to push back against negative reactions to them as parents where they feel little control. Because they feel that they fit in with other parents when tactics are successful they are also more likely to use strategies to orchestrate their children’s schooling and stay intertwined with their children. To summarize, the strategy, keeping up appearances, consists of the tactics, sharing information, reframing, and redefining self, through which caregivers try to promote themselves as “good” and responsible parents (to fit in as parents). Depending on their success, they throttle their tactics up or down to keep up appearances. If they are throttling up their tactics they have less time and energy available to regulate their relationships with their children so they can stay intertwined (together) to fit in. Stigma, living in poverty and access to support are just some of the conditions that influence the energy and time caregivers devote to promote success for themselves as parents (keeping up appearances). 5.8  The Critical Junctures: Hitting Rock Bottom and Reaching Islands of Calm Depending on the success of using strategies to intertwine to fit in, caregivers cycle  either into rock bottom or islands of calm. Hitting rock bottom represents a critical juncture where, after unsuccessfully using tactics to orchestrate their children’s schooling and keep up appearances, caregivers temporarily give up on using those strategies. Reaching islands of calm represents a critical juncture where, mainly as a result of using tactics successfully and maintaining their strategies, caregivers move into times of respite when intertwining to fit in is easier and caregivers can attend to other aspects of self. They can attend to other aspects of self because their children are functioning more independently and are achieving some  176  academic and social success and caregivers have space to examine their needs. Both junctures represent times where caregivers take stock of the effects the actions taken to reach their long-term outcomes for their children and for themselves. Being intertwined, with the energy and time devoted to regulating relationships, changes depending on whether caregivers are hitting rock bottom or reaching islands of calm. During cycles where caregivers hit rock bottom, regulating relationships with their children needs more time and energy because there is too much or too little distance between caregivers and their children. Too much or too little distance occurs as caregivers try to regulate relationships with their children. At points in cycles where caregivers reach islands of calm, intertwining to fit in is easier and caregivers and their children are more comfortably intertwined; regulating relationships seems to have placed them in a position where there is not too much or too little distance so they need to devote less time and energy to regulation. The time participants spend at rock bottom or islands of calm depends on the conditions they encounter. Hitting rock bottom and reaching islands of calm are associated with short-term outcomes. Short-term outcomes associated with critical junctures allow caregivers to figure out where they are in terms of using their strategies and cycling back in. Experiencing despair, anger, exhaustion, disconnection, and feeling drained, shunned, and side-stepped by the school system are just some of the short-term outcomes associated with hitting rock bottom. Short-term outcomes associated with islands of calm include time and space for personal development, tranquility, hopeful signs, and receiving support (from people or programs).  177  5.8.1  Hitting Rock Bottom  Hitting rock bottom is a critical juncture where caregivers temporarily move out of actively managing their children’s schooling and keeping up appearances. They have to take time out to regulate their relationships with their children outside the system and figure out how to cycle back in to their strategies. A specific incident can serve as a tipping point to hitting rock bottom. An adoptive mother describes her tipping point: The difference between my son and the in-group just got stronger and stronger and more set. He had an opportunity to go and play and jump on the trampoline of one of the children of the in-group, who lives just next door. And I noticed that he wasn’t allowed on the trampoline. And then when the movie started… almost all of the students from his class were there without their parents, and they would not let him sit with them (crying): And that’s after three years of putting it [the goal of social integration] on the IEP, to make any kind of integration meaningful. And so it was a watershed moment (17.1, lines 331-362). Participants have vivid descriptions of hitting rock bottom. One participant realized how my visual model of hitting rock bottom captured her despair: Everything that I was trying to do that I believed would make a difference for this child kept getting twisted. ..At that point,…that’s the point that I would have gone, “That’s it, I’m out of here. I don’t… you know, I’m done.” Like, I hit this point [rock bottom], really, at that point [the meeting] last Spring. Where I just thought, “I don’t need this” (16.1, lines 1036-1040).  178  Caregivers’ realizations that their strategies are not promoting academic and social success for their children or helping them to be seen as “good” and responsible parents leads to them suspending orchestrating schooling and keeping up appearances. There is a sense of despair, anger, disconnection, and exhaustion, when caregivers need to regulate their children’s behaviour 24/7 because their children can no longer attend school. Constant caregiving puts the relationship between caregivers and their children in jeopardy, as well as other goals for caregivers such as looking for employment and spending time with other people. In the following quotation, a foster mother describes the sense of exhaustion she experienced when, over time, her strategies are unsuccessful. We’ve got to take care of these kids, and all the challenges that manifest out of that, and then we’ve got this whole other package of fighting tooth and nail for services …So you’ve got these two energy drainers… and there’s just that point at which we all go, “God, I’m done. I can’t do this. I can’t do this another day. I can’t do this…” I’ve been there, “I can’t do this another minute.” Like, so completely drained. Like emotionally and physically, it affects everything (16.1, lines 1257-1261). When caregivers’ strategies to stay intertwined to fit in are not working and they hit rock bottom they disengage from the schools. There are cycles where caregivers don’t see it as possible for their children to be at school and there are cycles where caregivers are requested to keep their children home. Almost all participants described a general distancing from people they encounter because of a lack of understanding of FASD and the full time nature of actively managing but at rock bottom participants move from distancing themselves from others to disconnecting entirely. They describe “getting to the end of what you feel you can  179  manage,” “being done,” “being in pieces,” and “being at the end of your rope.” When at rock bottom, all caregivers express a loss in faith in the educational system. The following quotation describes the kind of disenchantment caregivers express when at rock bottom: I actually honestly think that these kids would be better off in a special school…not a special classroom because sticking kids in a special classroom and now they’re labeled by all the other kids and now they’re still getting picked on because they’re in the ‘special’ classroom. It’s kind of ironic because I think they’ve done the same thing with kids that are disabled and that kind of works…it teaches kids empathy and compassion and stuff but when you’ve got an invisible disability, I don’t think it’s teaching other kids things unless you can really get in there (9.1, lines 147-159). When caregivers perceive schools to persistently respond negatively or shun parents, caregivers are more likely to disengage. Because caregivers perceive their children as “unreliable historians” due to the children’s difficulties with language and memory, they rely on information from the school to regulate their relationships with their children. When they are shunned by the school, they do not know if their tactics are working, how to regulate relationships, and how to direct their energy to stay intertwined to fit in. A foster mother described the conditions that lead to hitting rock bottom where her positive feelings about herself were diminished. They were going so far as to be overriding me, like refusing actually to communicate with me and communicating directly with the social worker, because she’s the guardian. And so I was left out of the loop of communication (16.1, lines 1090-1093).  180  When tactics used to keep up appearances are unsuccessful caregivers feel that they are not accepted as parents and are blamed for what is happening to their children. They see themselves as different from other parents and as not appearing “responsible and good.” When biological parents are not able to prevent their children from failing academically and in social interactions and themselves from being regarded as bad parents, their grief, layered with guilt associated with the affected child surface: But for me it’s not just the grief, it’s the guilt too. It’s just soooo…it just…like I go so far, you know [to overcome it] it’s like I’m on my way to Italy and I get as far as Paris and then I end up back in Canada again. Like why can’t I go…right…but that’s FAS…right (5.2, lines 168-171). At rock bottom, caregivers go into a holding pattern where they are focusing on maintaining caregiving and regulating the relationships with their children. Caregivers wait it out when they hit rock bottom by not interacting with the school system. They refer to “not bothering,” “just going through the motions,” “just leaving it,” just “getting through the year,” and “not pushing it.” For some cycles, hitting rock bottom has a short duration; for other cycles, hitting rock bottom lasts for a long time. Insufficient support for children in schools, unpredictable school environments, lack of knowledgeable school personnel about FASD, and ambiguous or inconsistent special education criteria for support increase the likelihood caregivers will hit rock bottom. Those conditions also increase the likelihood that hitting rock bottom will last longer. It becomes less likely that caregivers will hit rock bottom or stay at rock bottom when they have access  181  to formal (e.g. respite care, childcare workers, support groups or key-workers) or informal supports (e.g. extended family). School environments are unpredictable given high staff turn-over or changes in rules and regulations, such as union rules pertaining to the substitution of support people. Caregiver actions (e.g., staff burn out because caregivers rely too heavily on staff to regulate the children’s behaviour) can contribute to unpredictable school environments if the staff change to protect themselves. A caregiver describes unpredictable school conditions that resulted in her son’s resistance to attend school and hitting rock bottom: At the beginning of the school year his teaching assistant was off frequently and I was really frustrated so I had gone in and said, “You know,[my son] can’t have the instability because the way the substitutes work is that they have to go through a list of seniority and they have to do it each day, so if the most senior person is already working, they go the next person so they never know who’s going to get called in to substitute and so he had, within the first 15 days of school this year, he had his SEA for three days and he had 12 other people. He does not work well with people he doesn’t know…takes him a long time to build a relationship, so he was just…like nothing was happening for him and he was really frustrated and confused and didn’t know what to expect when he went to school. [He] started resisting going to school (4.1, lines 8-19). Using tactics to orchestrate schooling does not prevent parents from being faced with changes in the supports their children receive, which undermines all of their efforts to have their children succeed academically and socially. When children are not supported despite  182  caregivers’ attempts to orchestrate for success, through pitbulling, cultivating connections, being on stand-by, and anticipating difficulties, their children are less likely to fit in and tactics to keep up appearances do not prevent parents from being regarded as “bad” or irresponsible parents. Feeling like their efforts are undermined and unrecognized increases the likelihood that parents will give up for the short term and hit rock bottom. Power differences make it more likely that caregivers will hit rock bottom. Foster parents, such as the foster parent quoted below, view themselves as experts on their children but their relative lack of power, which is expressed in interactions with others (e.g., social workers) who have power to make decisions, leads to them feeling unacknowledged as parents. They are not regarded as having a long-term investment in the children and do not hold legal decision-making power. And so if you push the envelope to the child’s social worker to get whatever it is, a service, a recommendation, a referral, a this, or a that, then you can get that reactive piece of, “No, I’m not doing that. I don’t see that as necessary.” You know, like they make the judgment call. And I think that’s the frustration that a foster parent has.… I don’t have that freedom. I think in the end, that would probably be the one factor that would push everything to end, really, would be just that… and I’ve seen that in some foster parents because we’re foster parents. Where eventually… like you can just only can do it for so long, you have so much energy and then there’s this cut-off point where you just go, “Whatever” (16.1, line 1651- 1657). When caregivers can rely on easily accessible and knowledgeable support they can reduce efforts to orchestrate schooling and keep up appearances and replenish their energy to avoid  183  hitting rock bottom. Caregivers who were able to anticipate or predict their need for support were less likely to hit rock bottom or stay at rock bottom for long periods. A caregiver who can predict the need for support and has family available can take time off and undertake self-care essential to sustaining her relationship with her child. Yeah…and it [managing] takes a lot of my energy but I’m really looking forward towards this week because I get a day off. My oldest daughter is going to watch them so I go out to the movies…. Like I need to do self-care (1.1, lines 188-191). Lack of support from extended family and lack of resources to purchase support (e.g. childcare) decrease the likelihood that caregivers can take time off. Many caregivers do not seek support from people with the lack of knowledge about FASD which reduces the respite they need to replenish the energy they require to regulate their relationships and stay intertwined to fit in: We’ve gone through the process of interviewing people that do respite in their home, and nobody is willing to take on this child with her package of issues. Because there’s, you know, safety issues, and people are not comfortable with it. You know, and I respect that. I mean, it’s a really big package. If you’re not living it on a day-byday basis, you don’t really get it (16.1, lines 234-239). Caregivers, who live in a setting that had been consistently portrayed as a community of people living in poverty and experiencing marginalization, indicate their connection to their community decreases the likelihood they would hit rock bottom or stay there for a long time. Five of six participants living in this community felt connected to their close-knit  184  community, which resulted in feeling supported and accepted. Participants refer to everyone knowing one another, having long term connections with each other, and trusting members of the community. Caregivers feel able to connect their children with support and connect with other parents and professionals who understand FASD. They describe access to counselors, key workers, childcare workers, support groups and community centres where drop-in visits are encouraged for caregivers and their children. These caregivers find support and services are available for themselves and their children in close proximity without “proving” they need support. Being accepted and embraced by their community reduces the energy and time they need for tactics to keep up appearances. Connections to helpful and knowledgeable support people also assist them in orchestrating their children’s schooling, leaving time and energy to focus on regulating their relationships with their children. When they hit rock bottom, the duration is shorter. A caregiver who lives in a close-knit community describes the availability of support and services in her community. Not only that but after school there’s a program where…like I said to her building blocks …a person comes in once a week…. If I need him to be there at her school, he will be there…and not only that but people that I work with that have known my family and known where I’ve been in my life … and support…cause I need the support myself, too, …they check in with me (1.1, lines 535-539). One participant, living in a setting that had been portrayed over the long-term as a community of people living in poverty and experiencing marginalization, presented a negative case. She felt disconnected from and unsupported by her community and did not  185  access available supports. When her child’s school placement was jeopardized as a result of an escalation of his secondary disabilities, keeping up appearances was difficult for her. She hit rock bottom but planned to move away from her community where she did not feel affirmed and accepted as a good parent. 5.8.2  Reaching Islands of Calm  Reaching islands of calm is a critical juncture where caregivers move into times of respite where intertwining to fit in is temporarily easier. Persistent actions from caregivers in supportive conditions increase their abilities to fit their children and themselves in and “buy” times of respite when their children are happy in school, stay in school, and keep to their routines. In these circumstances, caregivers feel positively about themselves as parents and are regarded by others as “good” and responsible parents. Their children provide the evidence to support that claim. Biological caregivers describe islands of calm as times when feelings of guilt associated with their alcohol use are less prominent. The reduction in time and energy devoted to orchestrating schooling and keeping up appearances at their children’s schools allows caregivers to attend to other parts of their lives, specifically, hobbies, work, social groups, or volunteering for special events. Experiencing some tranquility and having space for self-care decreases the energy and time to regulate their relationships with their children so they can stay intertwined to fit in. The following quotation captures the islands of calm caregivers are trying to achieve. So I just mean success in terms of that she was able to stay in school, to have some successful days where there wasn’t high levels of frustration or anxiety that lead to, you know, behaviours in the end. And that she actually liked going to school. To me,  186  that’s the better measuring stick than anything, is the fact that she would get up in the morning and be happy and want to go to school (16.1, lines 381-390). Islands of calm can last for a brief (e.g., a few days) or longer time (e.g., a school year); however, like hitting rock bottom, islands of calm are cyclical and their effects are often short-term: I was getting called in. My boss was always like cranky so I was like “I’m sorry…this is my kid, I have to go…I’ve got to do this.” And income assistance was pretty nice because he let me go back on because I was trying to keep my stuff together because I went back to school. I couldn’t do the GED tests…I have bad anxiety myself so every time I got in that room, my mind would go blank. So…I said, “I’m going to go get a job,” and then I was working…I was happy…everything was paid…the rent and everything. It was like “Yeah”…I felt really good about myself and then with him…always getting called in… “Hey…you’ve got to come and get him…something happened,” I just couldn’t work and now I’m starting to think I want to go back to work again but is it like going to be the same thing? (13.1, lines 184-192). The inherent nature of their children’s conditions, as well as the instability of the school system, for example, changing teachers, principals, and key workers, makes it difficult to reach islands of calm that can last for the long- term: P: And then in Grade Two, where she was still in the same program… R: Same social development program.  187  P: Same social development program, but now a complete shift. Everybody was new. New teacher, new assistants, completely different. The kids were the same. And a different style. A really different style of teaching, where this new teacher believed in full integration for all special needs kids. So she went from what I would say is a more protected setting to less protected. In that now she was integrated into a regular classroom….so that’s when she started to really, like what I would consider like fail (16.1, lines 391-402; 447-448). When children’s behaviours become more mature or they make scholastic progress caregivers have a sense that their children are moving forward. They feel they can throttle down their tactics to promote success for their children and for themselves as parents because they see positive signs. A caregiver’s perception of her child progressing towards regulating his own behaviour contributes to her temporary respite, in part, because she can decrease her energy and time regulating their relationship: P: We have a better outlook right now that school’s going to go better than we did the last time we talked. R: Okay. So tell me about that. Why did it change? P: Because his little mind just…his synapses just went off because he’s starting to repeat stuff to us…. He’s more aware of how his behaviour is (12.2, lines 215-219; 246). Caregivers’ knowledge of FASD contributes to them reaching islands of calm through their ability to obtain assessments for their children. Without assessments, caregivers lacked the  188  specific knowledge to leverage the tactics in orchestrating schooling to stay intertwined to fit in. Lack of assessment makes it more difficult for caregivers and schools to do their part and implement necessary supports. Parents who can assist their children to access necessary supports are more likely to be regarded as “good and responsible” parents. As one parent said, “without the assessment, teachers keep running into a brick wall.” Another caregiver said, “As long as she’s not assessed, [the school] can only go, “well…maybe it’s because she missed so much school…maybe it’s just because there’s problems at home…” (12.2, lines 80-86). School environments that increase the likelihood that children and caregivers will reach islands of calm include children being: assigned a knowledgeable teacher and/or assistant or aide; included in a smaller group with additional academic support; provided with appropriate and targeted interventions; and included in classrooms where the environment is adapted to make it less likely that children will fail. While caregivers actively use tactics to put supports in place through orchestrating schooling, they cannot be successful without the potential for schools to respond to their actions. The following two quotations capture favourable conditions. He had an amazing teacher, just an absolutely amazing teacher. And that made all the difference in the world to his wanting to go to school, to his enjoyment of school, to his feeling part…and she made sure…that everyone was included (17.1, lines 13113). R: What does a good teacher for a child with FASD look like…in your view?  189  P: Somebody that’s willing to look at things differently because he’s not going to learn. Somebody that’s willing to adapt their teaching to his needs… Rather than expect him to fit into their method of teaching…she was willing to try a different way; she was willing to work with the SEA and figure out another way to get to the same goal (4.1, lines 406-414). Some caregivers commented on the importance of principals in creating conditions in schools that could support islands of calm. Principals who understand the nature of FASD are flexible in the way they implement supports in school, work around systemic barriers to support children, and increase the likelihood caregivers and children can reach islands of calm. They have positive effects on activities in classrooms. If you have a good administrator who understands what’s going on and can work well with the staff, then you’ve got a good flow. If you have a poor principal, as we have now, it all goes to hell. And we’ve noticed that…you know…because there has been many changes happening with the principals (11.1, lines 39-43). Caregivers also refer to policies that affect their abilities to reach islands of calm. They indicate that children who have been assessed and identified as children with FASD are inconsistently designated under Ministry of Education criteria in special education categories that are attached to additional funding and extra support. Some parents indicate their children can be classified as having a behavioural difficulty which is not eligible for additional one-toone support:  190  She’s in a specialized program, but it is social development, it was not specialized for FASD or anything, it’s just simply a social development class that’s behavioural based…. So that’s all she qualified for in the end. So in moving from Kindergarten to Grade One, where they did some kind of assessment to determine, … I mean, I guess to get a designation…. I assume that’s what they were doing back then. She … certainly didn’t qualify for a one-to-one (16.1, lines 359- 370). Some caregivers indicated that because their children changed schools they missed the district cut-off date for the allocation of school-based supports. Caregivers of children who do not receive additional one-to-one support in the form of an aide but who encounter principals who are creative and flexible about support have more likelihood of reaching islands of calm. A biological mother using tactics to orchestrate schooling to provide support credits the principal with allocating a student teacher to her daughter’s class so the regular classroom teacher had more time to support her daughter: Because she came back a quarter of the way through the year there was no funding for any extra support for her. We’re very lucky that the principal there is creative and he will go and cause himself more work because he has taken on student teachers. Because [my child] now …, even if she doesn’t get help from this [student] teacher, her regular teacher will then have maybe more time (5.1, lines 90-93; 137-139). When children enter specialized programs, as a result of caregivers using tactics to orchestrate schooling and support from school personnel, it buys caregivers temporary respite and increases the likelihood they can spend less time and energy regulating their  191  relationships and keeping up appearances to be viewed as “responsible” parents. Specialized programs include: programs for children with FASD, programs for children with behavioural and emotional difficulties, and special classes. In these programs, teachers and assistants are knowledgeable about FASD, the ratio of teachers to students is lower, and the environment is structured to increase children’s chances for social and academic success. When children are in special programs caregivers need to advocate less for resources that help children regulate their behaviours and can reduce their tactics to orchestrate schooling and be intertwined to fit in. Some participants indicate that staff members in special programs engage in preventative actions to defuse children’s behaviour before it becomes necessary to ask parents to intervene or take their children out of school. The caregivers describe staff members structuring environments to reduce sensory triggers and accommodating students’ sensory needs which make success for children more likely. One parent comments that the specialized program her child attends has a psychiatrist on staff that helps regulate her child’s behaviour and reduces the caregivers’ time and energy using tactics. P: [The program] is good because they won’t call you and be like, “Pick up your kid.” They have isolated rooms that are like…it’s called the “Blue Room”…it’s all blue. Nothing else in there. They close the door…there’s a window…you can see in there…the kids can go crazy…break the…hit the walls…do whatever they want but they can’t hurt themselves because there’s nothing to hurt themselves with. So, they’ll be in there until they’re calm and then they’ll have a timer. If they look calm, they still get time to see if they are for surely…calm because they could just be like  192  playing ‘Hey…I’m calm…let me out,’ and then they go nuts again. It’s really good because they let it all out and by the time they let all that anger and all that energy, they usually have their meltdown and then they talk about what’s bothering them…. R: So you didn’t need to go in during school hours? P: No…never (13.1, lines 205-223). In an example of a negative case, one parent indicates the special program for her child does not offer her a temporary reprieve. I tried sending her to a school in [name of district] that had a specialized class for children with FAS, which I thought was brilliant. Accept eight students, with four adults. But the four grade sevens were all boys, so it was six boys, two girls. They were more severely affected than [my daughter is], intellectually, emotionally, you name it. So she was really having a really hard time at that school, and I was trying to keep her there. So I’m doing the best with what’s out there, but I get the fact of integration, and I get the fact of segregation. It doesn’t always work, right (5.1, 7188). This participant suggests, even when the educational environment is adapted to facilitate success for students with FASD, the fit between participants in the program and difference in presenting behaviours can interfere with students’ success. Those types of conditions result in caregivers having to devote energy and time to tactics to orchestrate schooling for success for their children and keep up appearances as good parents.  193  The lack of stability in school programs reduces the likelihood that islands of calm will persist. Several participants indicate that when their children do better in specialized programs they are integrated back into the regular programs. Moving their children out of supportive environments can disrupt progress, offer less support for students, and increase time and energy caregivers devote to tactics to orchestrate schooling so they can stay intertwined to fit in. Had to go in and talk to them and explain my story and why I think this would be a good program for him and they were like “yeah.”’ So it helped him to come. It was only for one year. I tried to push one more year but they said he was so good in his academics that he’s ready to go to [the regular program] (13.1, lines 64-68). Caregivers who can anticipate the need for support for themselves and actively seek out support are more likely to reach islands of calm and occupy them for longer. Proactive caregivers who seek and gain support or have accessible support can maintain the time and energy required to promote success for their children and promote themselves as “good” and responsible parents. Successful tactics buy caregivers times of respite and allow them to stay intertwined with their children. R: I have two more questions…specifically…one is if you can tell anything to other caregivers of children with FASD and other parents, what would you tell them? P: Look after yourself. R: Great. Can you tell me a bit more about that? What does that mean?  194  P: Well…these kids are draining and if you don’t look after yourself, you’re not going to make it….You know…for us as an adult, that’s a routine you have to get into, just like if you’re…whatever it’s going to be, if your hobby is going to be rock climbing or working out or whatever…whatever it is (9.1, lines 458-468). Caregivers indicated that living in close-knit neighbourhoods with long-term connections and easy access to support and services increases their chances of reaching islands of calm and occupying them for longer. Feeling accepted in neighbourhoods makes keeping up appearances easier because less energy is devoted to tactics to be seen as “good” and responsible parents. When caregivers are also connected to support people with knowledge of FASD, orchestrating schooling through pitbulling (e.g., hauling in support) is also easier. This leaves time and energy to focus on the relationship with their children. All caregivers identified communication-on-the-go as an important condition that helps them to maintain islands of calm where their children are successful. Easy communication with the school reduces their use of tactics to orchestrate their children’s schooling and assists with staying on islands of calm. Communication-on-the-go involves informal communication beyond the usual structures for communication that typically occur for parents and school professionals (e.g., structured planned meetings). Communication-on the-go sends caregivers a message that they are acknowledged and respected as experts on their children. They can throttle down their tactics to keep up appearances as good parents. Under conditions of growing trust that result from communication-on-the-go, both caregivers and teachers are more likely to work together to make success possible for children. A foster mother describes what communication-on-the-go looks like:  195  It looked like the school having that freedom to literally call me in the moment and say, “You know, we started to do this, and this happened, and now she’s doing this. I’m thinking about doing this, what do you think?” (16.1, lines 269-272). To summarize, caregivers reach two possible critical junctures depending on whether strategies to intertwine to fit in are unsuccessful or successful in the short-term: hitting rock bottom and reaching islands of calm. Hitting rock bottom and reaching islands of calm are associated with short-term outcomes. Short-term outcomes associated with critical junctures allow caregivers to figure out where they are in terms of using their strategies and cycling back in. Short-term outcomes associated with hitting rock bottom for parents include: despair, anger, exhaustion, disconnection, and feeling drained, shunned, side-stepped, and, for biological parents, guilt and grief. Short-term outcomes for children include: either being out of school or in a holding pattern at school, frustration, feeling detached from school or resisting school, and lack of inclusion. For caregivers, hitting rock bottom indicates failure at orchestrating schooling resulting in being ignored or being marginalized as parents. Hitting rock bottom and staying there for long periods puts caregiver-child relationships in jeopardy. Short-term outcomes associated with islands of calm for parents include: respite, time and space for personal development, tranquility, hopeful signs, and receiving support (from people or programs). For biological caregivers, short-term outcomes also include respite from guilt and grief. For children, short-term outcomes from reaching islands of calm include: being happy at school and staying in school, maintaining routines, showing more mature behaviours, and feeling included.  196  At the point where intertwining to fit in can come under threat, through hitting rock bottom, and islands of calm are jeopardized, through changing conditions, caregivers move out of rock bottom and from islands of calm to re-engage with the system. 5.9  Re-engaging Ca