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Brace, Heather J.
h [electronic resource] :
b diverse perspectives on raising a child with autism /
by Heather J. Brace.
[Tampa, Fla] :
University of South Florida,
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Dissertation (Ph.D.)--University of South Florida, 2009.
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Text (Electronic dissertation) in PDF format.
ABSTRACT: This qualitative study examines the lived experience of culturally diverse caregivers to children with ASD. The study is situated within the theoretical framework of the life-course theory. Specifically, the impact of the transition of diagnosis on the trajectory of the primary caregiver's life-course is explored. Further, coping mechanisms, caregiver burden/satisfaction, diagnosis, and other components which contribute to the larger construct of lived experience are discussed. Participant stories were obtained through the use of interactive interviewing techniques and transcripts were transformed into a cohesive narrative designed to evoke emotion within the reader while preserving the authenticity of the data. Further, the study contributes to a disability-related discourse which challenges the current deficit model and gives a voice to individuals who may have previously been marginalized based on their cultural and disability-related characterizations.
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Advisor: Patricia Alvarez McHatton, Ph.D.
x Special Education
t USF Electronic Theses and Dissertations.
Lived Experience: Diverse Perspectives on Raising a Child with Autism by Heather J. Brace A dissertation submitted in partial fulfillment Of the requirements for the degree of Doctor of Philosophy Department of Special Education College of Education University of South Florida Major Professor: Patricia Alvarez McHatton, Ph.D. David Allsopp, Ph.D. Arthur Bochner, Ph.D. Sylvia Diehl, Ph.D. Jeannie Kleinhammer-Tramill, Ph.D. Date of Approval: June 11, 2009 Keywords: disability, families, narrative, qualitat ive research, life-course theory Copyright 2009, Heather J. Brace
i Table of Contents List of Tables iv Abstract v Chapter One: Introduction 1 Statement of the Problem 1 Research Questions 5 Qualitative Inquiry 6 Researcher Identity 8 Chapter Two: Literature Review 10 Autism Literature 11 Prevalence and History 11 Definition and Characteristics 12 Etiology 13 Diagnosis 15 Family Literature 16 Overview 16 Process 19 Coping/Stress and Caregiver Burden/Satisfaction 23 Narrative 28
ii Life Course Theory 32 Chapter Three: Methods 36 Participants 45 Variables 47 Instruments 47 Data Analysis 48 Validity 52 Limitations and Researcher Identity 53 Prologue 56 Chapter Four: Donna and MartyÂ’s Story 60 Chapter Five: SandraÂ’s Story 91 Chapter Six: AdrianaÂ’s Story 114 Chapter Seven: Discussion 138 Overview 138 Donna 142 Sandra 147 Adriana 149 Bringing it Together 154 Researcher Reactions 159 Epilogue 161 References 164 Appendices 190 Appendix A: Demographic Survey 191
iii Appendix B: Interview Protocol 193 Appendix C: Recruitment Flyer 194 About the Author End Page
iv List of Tables Table 1 Interactive Interviewing Procedures 41
v Lived Experience: Diverse Perspectives on Raising a Child With Autism Heather J. Brace ABSTRACT This qualitative study examines the lived experienc e of culturally diverse caregivers to children with ASD. The study is situa ted within the theoretical framework of the life-course theory. Specifically, the impact of the transition of diagnosis on the trajectory of the primary caregiverÂ’s life-course i s explored. Further, coping mechanisms, caregiver burden/satisfaction, diagnosis, and other components which contribute to the larger construct of lived experience are discussed. Participant stories were obtained through the use of interactive interviewing techniq ues and transcripts were transformed into a cohesive narrative designed to evoke emotion within the reader while preserving the authenticity of the data. Further, the study co ntributes to a disability-related discourse which challenges the current deficit model and give s a voice to individuals who may have previously been marginalized based on their cultura l and disability-related characterizations.
1 Chapter One Introduction Statement of the Problem In recent years, the prevalence of individuals who have been identified as having Autism Spectrum Disorders (ASD) has increased drama tically. Specifically, between 1997 and 2006, the number of 6 to 21-year-old child ren classified as having an ASD in public special education programs increased by 528% from 42,517 to 224,594 (U.S. Department of Education, 2002). Further, the disord er is four times more prevalent in boys than in girls (Autism Society of America, 2008 ). The prevalence rate of ASD increases at an annual rate of 10%-17% while the an nual cost to support the disability is an estimated $90 billion (Jarbrink & Knapp, 2001). Because of this marked increase in identification, there is a need to promote awarenes s about the disorder and its implications, as well as investigate the impact of our educational policies on children and families with autism. One challenging issue faced by school systems today is teacher knowledge. Research indicates that there are many strategies t hat are considered evidenced based practices. For instance, a large amount of research on ASD focuses on the effectiveness of positive behavior support (Becker-Cotrill, McFar land & Anderson, 2003; Carr et al., 1999; Carr et al., 2002; Cole & Levinson, 2002; Fox Dunlap, & Cushing, 2002; Lucyshyn et al., 2007; Odom et al., 2003; Turnbull et al., 2002; Wehmeyer, Baker,
2 Blumberg & Harrison, 2004; Valdivia, 2007) and othe r evidence based practices such as social stories (Adams, Gouvousis, VanLue, & Waldron, 2004; Barry & Burlew, 2004; Crozier & Tincani, 2007; Gray, 1998; Ivey, He flin & Alberto, 2004; Kuoch & Mirenda, 2004; Rust & Smith, 2006; Sansosti, Powell -Smith, & Kincaid 2004; Scattone, Tingstrom & Wilczynski, 2006; Smith, 2001) and augm entative and alternative communication (Bondy & Frost, 2002; Bondy & Frost, 2001; Bryan & Gast, 2000; Charlop-Christy, Carpenter, Le, LeBlanc, & Kellet, 2002; Ganz & Simpson, 2004; Hodgdon, 2001; Kravitz, Kamps, Kemmerer & Potucek, 2002; Son, Sigafoos, O'Reilly, Lancioni, 2006; Tincani, 2004). Unfortunately, many individuals, including service providers and other professionals in the field, are unaware how to effectively work with individuals with autism and their families (Autism Society of America, 2008) in a manner that empowers, respects, and acknowledges their liv ed experience (Knox, 2000) This lack of knowledge in evidence based practices on th e part of professionals and service providers impacts the familyÂ’s ability to be active ly involved in a collaborative educational process. While there is evidence documenting the importance of the family component in intervention design (Baird et al., 2000; Beatson & Prelock, 2002; Prelock, Beatson, Bitner, Broder & Ducker, 2003; Wall, 2004; Wolery & Garfinkle, 2002), there is minimal research pertaining to the lived experiences of and the coping mechanisms employed by primary caregivers (Glidden, Billings & Jobe, 2006) of children with ASD Additionally, culturally diverse families (Harry, 2002) of childr en with autism (Zhang & Bennett, 2003) have also been under researched. Specifically the intersection of race, family coping mechanisms, and autism has been overlooked ( Dyches, Wilder, Sudweeks,
3 Obiakor, Algozzine, 2004); as autism is evident acr oss racial and ethnic groups, and its prevalence rate continues to increase (United State s Department of Education, 2002), it is critical that future research examine the intersect ion of these constructs. The lack of research on coping mechanisms and lived experiences of primary caregivers to individuals with ASD is problematic a s it has the potential to provide professionals with the information they need to imp rove service accessibility for individuals with ASD and their families. The family story has the power to provide firsthand accounts of what it is like to raise a child w ith ASD, along with the perceived needs of the primary caregiver(s). However, existing fami ly-related literature on ASD is primarily comprised of memoirs written by parents o f individuals with ASD (Fleischman, 2004; Green, 2003; Rubin, 2007). In addition to the memoirs of parents with children with ASD, quantitative, mixed-method, and qualitati ve studies exist that examine and document caregiver burden, satisfaction, coping mec hanisms, and well-being of caregivers of children with disabilities, but not A SD specifically. (Banks, 2003; Glidden et al., 2006; Green, 2007; Green, 2003; Leiter, Kra uss, Anderson & Wells, 2004; Pruchno, Patrick & Burant, 1997). There is a need for research to examine the coping strategies, well-being, and caregiver satisfaction/burden experienced by caregi vers to individuals with ASD. This differentiation is needed due to the relatively eme rgent nature of and the uncertainties associated with ASD. How do caregivers cope with th is uncertainty? How does the unknown impact the life course of the primary careg iver? Transition s associated with the life course perspective, are life-changing events t hat may have an impact on social status, identity, and role involvement (Elder, 1985). The d iagnosis of a child with ASD would
4 serve as a transition for the family of the child, specifically to the life course of the primary caregiver(s). The concept of transitions ca n be situated in a stress and coping perspective to allow for an examination of the inte rsection of the timing of the diagnosis, the social context in which the diagnosis occurred, and the challenges associated with the potential stressor, namely the diagnosis (Seltzer, Greenberg, Floyd, Pettee & Hong, 2001). Knox (2000) suggests that professionals in the fiel d begin to examine the family system through the use of an interpretive approach which views families as experts of their own lived experiences. While the aforemention ed concepts of coping styles, caregiver burden/satisfaction, and well-being are s ignificant pieces of the larger concept of lived experience, they are not exhaustive. The c urrent study is grounded in this literature because these components serve as a foun dational construct on which to build the larger story of lived experience. Research addr essing the coping mechanisms of caregivers to individuals with disabilities illustr ates that these mechanisms tend to differ across cultures, and that African-American caregive rs typically report higher levels of caregiver satisfaction and lower levels of caregive r burden than their White counterparts (Pruchno, et al., 1997). Further, conceptions of di sability tend to differ among cultures (Harry, 2002; Rogers-Adkinson, Ochoa, Delgado, 2003 ), thus warranting an examination of the intersection of culture and lived experience within the context of this study. However, the goal of the study is not to explore th e cultural differences among the families, but to explore the impact of the diagnosis transition on primary caregivers of children with autism from diverse backgrounds.
5 Much of what we know about autism involves history, diagnosis, prevalence, and intervention. Little is known about the impact of t he diagnosis transition on the life course of the primary caregiver(s). This qualitativ e study examined the lived experience of diverse primary caregivers of three children dia gnosed with ASD through the use of interactive interviewing techniques, thus allowing for serendipitous findings. This has implications for professionals in the field, in tha t, the larger concept of lived experience will be explored at a depth that may be difficult t o attain through traditional quantitative methods (Corbin & Strauss, 1998). Further, the stud y contributes to a disability-related discourse which challenges the current deficit mode l and gives a voice to individuals who may have previously been marginalized based on their cultur al and disability-related characterizations. My professional experience and e ducational knowledge helped to guide and inform my interpretations rather than serve as a vehicle for me to pass judgment. Research Questions This study examined the lived experience of primary caregivers who have raised a child with autism. Primary caregivers of African-Am erican, Hispanic, and Caucasian decent were interviewed in order to obtain three se parate accounts, from diverse perspectives, of raising a child with autism. Data was collected through the use of interactive (Ellis, 2004) and responsive (Rubin & R ubin, 2005) interviewing techniques. Additionally, the researcher maintained field notes in order to document environmental, emotional, and personal factors pertinent to the st udy. The intersection of culture, disability, and lived experience had implications f or the goals of this study and contributed to the overall development of the narra tive.
6 What are the lived experiences of diverse families in raising a child with autism? This is a broad question which is explored the foll owing: a. impact of the diagnosis (transition ) on the life course of the primary caregiver(s) b. coping mechanisms c. caregiver burden/satisfaction d. well-being e. family culture f. community experience/participation g. service availability/accessibility Because the methodology used in this study values a n authentic account of lived experience, the interview was not limited to the ab ove categories. Rather, the interview protocol was dynamic in nature and continued to eme rge and change throughout the course of the study. The meanings of the participan t stories were interpreted within the context of the interview, thus making it difficult to specify explicit research strategies prior to the outset of data collection (Patton, 199 0). Qualitative Inquiry Interactive interviewing is a process which requir es the researcher to engage in a collaborative experience with the participant as we ll as a critical examination and reflection of the self (Ellis, 2004). Further, inte ractive interviewing emphasizes not only the participant story, but the story of the interac tion between researcher and participant. This interaction, in which both parties share their own stories and experiences, is the focus of interactive interviewing. Subsequently, th e researcher is not limited to a
7 predetermined list of questions. Rather, the interv iew is semi-structured and allows the researcher to probe using open-ended questions in o rder to achieve a greater depth of understanding of the lived experience. Due to the d ynamic nature of this interviewing technique, the interviews reflect participant indiv iduality and do not necessarily address identical topics. The focus of responsive interviewing (Rubin & Rubi n, 2005) is on the depth of understanding attained from the interview experienc e rather than the breadth of information gathered. Further, this method acknowle dges that the experiences, personalities, and feelings of the interviewer and interviewee interact and influence each other. Thus, the researcher must exhibit self-aware ness through the examination of any biases or expectations that may exert an unintended influence on the participant. Personal involvement and self-reflection are encouraged as t hese practices facilitate empathy and improve the overall quality of the interview (Rubin & Rubin). To this end, the personal journey of the researcher is intertwined within the family stories through the use of problematics and metanarrative reflections in order to illustrate the interpretive process of the researcher (Peshkin, 2000). The family stories are based on the lived experie nces of the primary caregiver(s) of the child with autism. The researcher did not se ek out the stories of siblings, extended family, or the individual with autism. While traditional quantitative researchers may perc eive the inability to generalize this study to a larger population as a limitation, qualitative research defines generalizability in different terms.
8 In the context of qualitative inquiry, Ellis (2004) views generalizability as the way in which the story speaks to the reader, while Linc oln and Guba (1985) utilize the term transferability as a means of referring to the way in which the reader applies the findings of the study to new situations; Â“retrospective gene ralizationÂ” (Eisner, 1991, p. 205) refers to how we continuously modify the way in which we v iew our past and future experiences based on our interaction with the resea rch findings. Further, Harry (2002) warns against assuming that recipients of special e ducation services are representative of their cultural group and that findings are not nece ssarily accurate reflections of the larger culture. The goal of this study was not to generali ze to the larger cultural group, but rather to gain a deeper understanding of the role d isability and culture play in the construction of lived experience for three particul ar families. Researcher Identity In all research the identities of the researcher im pact the interpretation of the data (Peshkin, 1988). Researcher qualities have the pote ntial to Â“filter, skew, shape, block, transform, construe, and misconstrue what transpire s from the outset of a research project to its culmination in a written statementÂ” (Peshkin p. 17). When researchers are aware of these qualities, they are able to disclose this inf ormation to the reader along with the potential effect of these qualities on the final pr oduct. Harry (1996) posits the notion of Â“researcher personasÂ” (p. 296) and how these person as guide the way in which she identifies with the families she studies; her insider status. This insider status, in turn, influences the decisions she makes as a researcher. Thus, it was important for me to identify my own researcher personas and how these p ersonas had the potential to impact the decisions I make as a researcher.
9 I have both taught individuals with ASD and have a close relationship with a family member diagnosed on the spectrum. Although I have not had the experience of raising a child with ASD, I believe that my previou s interactions with families of children with ASD provides a common association between myse lf and the families I am researching, thus allowing me to view the families as Â“theseÂ” families rather than Â“thoseÂ” families (Harry, 1996). These personas had an influ ence on my interpretations, participant responses, and the nature of the resear cher-participant relationship. However, disclosing my multiple researcher identities served as a mechanism for providing as honest a portrayal of the families as possible. Fur ther, I shared and negotiated my interpretations with the research participants, thr ough the use of member checks, in order to ensure that they did not feel as though they wer e being misrepresented. This triangulation of the data served as a method to enh ance the truth value, typically known as internal validity in traditional quantitative re search, of the study (Lincoln & Guba, 1985). The following chapter will provide a review of the literature addressing autism, life course theory, stress and coping in family and disability related discourse, and qualitative research methods utilized over the cour se of the study.
10 Chapter Two Review of Literature The purpose of this study was to examine the lived experiences of diverse families in raising a child with autism. A brief hi story and overview of ASD is presented in order to provide a foundational knowledge of the disorder. Narrative inquiry and family perspectives of disability are discussed to illustrate the importance of the family story and its implications for professionals in the field. Further, coping and stress literature pertaining to caregivers of individuals with ASD, along with an explanation of the life course theory are examined to illustrate t he need for researching lived experience through a life course perspective. The literature p ertinent to this study was reviewed and will first focus on an overview of autism, includin g prevalence, definition, characteristics, etiology, diagnosis, and treatment. Family issues w ill also be explored with an examination of coping, stress, well-being, and the use of narrative. A discussion of the life-course theory will conclude the review of lite rature. Autism Literature Prevalence and history. Autism is a neurobiological condition that is typic ally diagnosed prior to the age of three. In recent year s, the number of individuals who have been classified as having autism spectrum disorders (ASD) has increased dramatically. Prevalence rates indicate that 1 in every 150 8-yea r-old children is diagnosed somewhere on the spectrum. (Center for Disease Control, 2007) Because of this marked increase in
11 classification, which could be due to changes in id entification procedures, the need to promote awareness about the disorder and its implic ations is recommended (Center for Disease Control, 2007). The words "autistic" and "autism" are developed fro m the Greek word "autos" meaning "self." Leo Kanner used the term Â“autisticÂ” in 1943 to describe 11 children Â“as having marked differences in their ability to socia lize with others and extreme rigidity in their behaviorsÂ” (Heflin & Alaimo, 2007, p.49). Kan ner described specific characteristics demonstrated by children classified as having Â“clas sic Kanner syndromeÂ” (Scheuermann & Webber, 2002). These characteristics included: co mmunication deficits, presence of echolalia, distress in unfamiliar situations, lack of engagement in imaginative play, and the presence of repetitive behaviors (Wall, 2004). Additionally, in 1944, Hans Asperger, of Vienna, Austria, published a seminal paper descr ibing a similar disorder, which became known as AspergerÂ’s syndrome. KannerÂ’s (1943 ) and AspergerÂ’s (1944) work were the Â“first theoretical attempts to explain the se complex disordersÂ” (National Alliance for Autism Research, 2005). Definition and characteristics There are various definitions of autism which hav e been presented throughout the years. However, accor ding to Wall (2004), all definitions address the impairments present in social interacti on, communication, and imagination skills. These impairments are often coupled with th e presence of repetitive behaviors. The DSM-IV (2000) defines autism as a biological/neurol ogical condition that is usually diagnosed before three years of age. Three distinct criteria, which are often referred to as the triad of impairments, are used to diagnose auti sm. These criteria include: Â“1) qualitative impairment in social interaction, 2) qu alitative impairments in
12 communication, 3) restricted, repetitive, and stere otyped patterns of behavior, interests, and activitiesÂ” (DSM-IV, 2000, p. 299.00). Autism is a spectrum disorder, meaning that childre n diagnosed with autism display a wide range of ability levels. Autism Spec trum Disorder (ASD) refers to the Â“broad range of subtypes and levels of severity tha t fall on the spectrum of autism and pervasive developmental disordersÂ” (Simpson et al., 2005, p.1). The primary subgroups on the spectrum include Autistic Disorder, Asperger Syndrome, Rett syndrome, Childhood Disintegrative Disorder, and Pervasive De velopmental Disorder. While these subtypes have different diagnostic criteria, the tr iad of impairments is evident on all areas of the spectrum. Watson, Baranek, & DiLavore (2003) discussed the fi ndings on affective development, sensory processing and attention, prax is and imitation, communication, play, motor features, and stereotyped behaviors in individuals with autism. Their synthesis of research on affective development ackn owledged limited facial expressions as a possible symptom of ASD. In the area of sensor y processing and attention, symptoms such as hypersensitivity to light and soun d, aversion of certain food textures and social touch, and over-focused attention were a lso reported in individuals with autism. Deficits in comprehension, communicative me ans (eye contact), communicative intent (pointing), play, and motor development were also noted. However, deficits in motor development were not readily evident until af ter the third year of age (Watson et al., 2003). Early indicators of the above characteristics inclu de: lack of babbling or cooing, pointing, or gestures by 12 months of age, no singl e words by 16 months of age, no 2-
13 word spontaneous phrases by 24 months of age, any l oss of language and/or social skills at any age, does not look at others, does not respo nd to name, does not show objects, does not engage in symbolic play (Baron-Cohen, Allen, & Gillberg, 1992; NICHD, 2001b; Woods & Wetherby, 2003). The social characteristics associated with a diagno sis of ASD have particular implications for families. In particular, behavior challenges exhibited by children with ASD have been shown to have a negative impact on st ress-levels, emotional well-being, and quality of life of the caregiver (Allik, Larsso n, Smedje, 2006; Hastings et al., 2005; Higgins, Bailey, & Pearce, 2005) Subsequently, taking a child with ASD into the community can serve as a source of stress ( Hastings). In order to avoid this stress, families may engage in isolationist behavior in ord er to avoid social situations where stereotypical ASD behaviors may manifest themselves (Autism Society of America, 2008). Etiology In the 1950Â’s and 60Â’s, Bruno Bettleheim claimed that Â“refrigerator mothersÂ” were the cause of their childÂ’s autistic t endencies. The detachment and lack of affection shown by these mothers was believed to be the cause of autism in children. This belief was later disproved when Dr. Bernard Rimland and Dr. Eric Schopler began to challenge BettleheimÂ’s claim. In 1964, Rimland demo nstrated that BettleheimÂ’s theory was false by establishing autism as a biological co ndition (National Alliance for Autism Research, 2005). More recently, autism has been established as a dis order of neurobiological origin (Akshoomoff, Pierce, & Courchesne, 2002). Current r esearch addresses the role of genes (Castermans et al., 2004), vaccines (Bernard, Enaya ti, Redwood, Roger, & Binstock,
14 2001; Rimland, 2000; Shaw, 2002) concentration of t oxic elements (Fido & Al-Saad, 2005), and differences in brain structure (Herbert, et al., 2005; Vargas, Nascimbene, Zimmerman, & Pardo, 2005) as possible causes of ASD In 1977, the first autistic twin study was publishe d, which suggested a genetic basis for the disorder. In the early to mid 1990s, genetic researchers began to link autism to individuals with abnormalities on chromosome 15. In 1998, researchers reported evidence of a link between autism and chromosome 15 q and chromosome 7q. By 2001, several researchers had completed genetic screens t hat have identified several genomic regions containing genes that could be associated w ith autism (National Alliance for Autism Research, 2005). Currently, there are many t heories and hypotheses regarding the etiology of autism spectrum disorders. The vast arr ay of theories and hypotheses regarding the etiology of ASD can have implications for families. Specifically, despite the fact that BettleheimÂ’s claims have been dispell ed, families often experience guilt and blame over their childÂ’s diagnosis (Kuhn & Carter, 2006; Mercer, Creighton, Holden, & Lewis, 2006). The genetic basis of the disorder has caused some parents to lay blame on themselves for contributing genes which may have le d to their childÂ’s ASD (Gray, 1995; Mercer et al., 2006), however, little is known as t o whether or not parents experience guilt over their parenting skills. This can be prob lematic in that unresolved feelings of guilt can result in feelings of inadequacy in their role as a parent (Kuhn & Carter, 2006). Herbert et al. (2005) identified an increase in th e amount of white matter present in the brains of individuals with autism. This incr ease in white matter is said to be associated with connectivity abnormalities typicall y found in the areas of the brain responsible for higher-order processing skills. Add itionally, Vargas et al., (2005)
15 conducted a post-mortem study where the brains of 1 1 individuals with autism, aged 5 to 44, were examined. The results revealed inflammatio n in the same areas of the brain with abnormal white matter growth. However, the study wa s inconclusive in determining whether or not the inflammation is actually the cau se of autism, or if it is a result of something else that causes the disorder. The mercury present in some vaccinations has been speculated to contribute to the presence of autism (Bernard et al., 2001; Rimland, 2000; Shaw, 2002). According to Bernard the FDA and the American Academy of Pediatr ics (AAP) determined that the typical amount of mercury Â“injected into infants an d toddlers via childhood immunizations has exceeded government safety guidel ines on an individual and cumulative vaccine basisÂ” (p. 462). Bernard identif ied similarities among individuals with mercury poisoning and ASD such as: speech and language impairments, sensory deficits, abnormal behaviors, and cognitive impairm ents. Although parallels have been made between mercury poisoning, vaccines, and the p resence of ASD, there is insufficient research to conclusively label mercury poisoning and vaccinations as a cause of autism (Simpson et al., 2005). Diagnosis As no specific biological markers have been ident ified as causes of ASD, diagnosis of the disorder is made based on pur ely observational measures, which leads to questions regarding the reliability and va lidity of the diagnosis. Screening tools are used as a means of identifying children who may be at risk for being diagnosed with autism. Screening tools alone do not provide a diag nosis of ASD. Most of these tools employ a parent questionnaire and they must report sensitivity and specificity. The sensitivity of a tool refers to the true positives, or the number of individuals who were
16 identified as at-risk and then later failed the fol low-up testing and/or were diagnosed with ASD. The specificity of a screening tool refers to the true negatives, or those individuals who were identified as no risk and who later passed follow-up testing and/or did not receive an ASD diagnosis. In addition to the parent questionnaire, observations are necessary and typically occur in both clinical and natural settings. Baird et al., (2000) identify the need for both parents and professional s to monitor behavior and opposed the idea of a single screening. Continuous monitoring p aints a more comprehensive picture of the childÂ’s behavior and decreases the likelihoo d of misidentification. Family Literature Overview. According to the Autism Society of America (ASA) (2 008), autism impacts individuals from all racial, ethnic, and so cial boundaries; the disorder can affect any family or child. In addition, approximately 1.5 million people in the United States today are living with the effects of ASD (ASA). Unf ortunately, despite the increasing prevalence rates, many professionals in the field a re still unaware of how to effectively collaborate with individuals with ASD and their fam ilies (ASA). Further, there is an overall lack of awareness about the disorder and it s implications for those affected. The increase in the number of individuals diagnosed with autism illustrates the need for increased awareness about the disorder and collaboration among parents, teachers, and professionals. Parents and profession als report several barriers to the development of a collaborative partnership among st akeholders. In particular, language, ethnicity, parent education level, and others have been identified as barriers (Dunlap, 1999; Turnbull, Turnbull, Erwin, & Soodak, 2006; Ya p & Enoki, 1994) Further, research has reported that parents often times feel as thoug h they have little or no involvement in
17 their childÂ’s educational programming (Osher, Osher & Blau, 2005; Spann, Kohler, & Soenksen, 2003). In addition, service delivery mode ls for community agencies do not always take into account the increasing diversity i n regards to ability/disability, language, religion, family dynamics, socio-economic status, a nd ethnicity (Harry, 2008; Lynch & Hanson, 1998; Thomas, Ellis, McLaurin, Daniels, & M orrissey, 2007). Current literature on the topic of autism and other disabilities identifies the need to address the family component, cultural and lingu istic diversity, and service accessibility (Dyches, et al., 2004; Harry, 2008; Z ionts, Zionts, Harrison, & Bellinger, 2003; Zionts & Zionts, 2003). Dyches contends that as ASD often coexists with mental retardation and a lack of functional speech, parent s are faced with challenges that far exceed those associated with an ASD diagnosis. In p articular, research should address the intersection of these challenges with family charac teristics. An exploration of this intersection has the potential to yield information related to levels of stress in the home and the ability of the caregiver to effectively ins truct their child in the areas in which challenges are experienced (National Research Counc il, 2001). Wolery & Garfinkle (2002) discuss an under-reportin g of childrenÂ’s family structure, ethnicity, and race. Family and cultural dynamics impact they way in which caregivers perceive their experience raising a chil d with ASD. Specifically, information addressing Â“familial appraisal of autism within a c ultural contextÂ” (Dyches et al., 2004) is not readily available. As family is the most basic unit of cultural identity, perceptions of disability and accessibility of services across cul tures must be examined (Dyches). In addition to perceptions of disability, family adapt ation to disability within a multicultural context is an area which has been largely ignored. While The Resiliency Model of Family
18 Stress, Adjustment, and Adaptation (McCubbin, McCub bin, Thompson, & Thompson, 1998) addresses multicultural constructs, research utilizing this framework has yet to make the distinction between ASD and other developm ental disabilities (Dyches). This is problematic, in that, ASD is considered to be a mor e debilitating disorder than many others (Randall & Parker, 1999) and places more str ess on families than other disabilities (Weiss, 2002). Subsequently, there is a need for re search which seeks to examine the intersection of race, family adaptation, and ASD (D yches). Although the literature provides caregiver accounts of living with a child with autism (Abbeduto, et al., 2004; Boyd, 2002; Gray, 2 006; Green, 2003; Greenberg, Krauss, Seltzer, Chou, & Hong, 2004; Magana & Smith 2006; Rubin, 2007; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2007) many of these accounts utilize quantitative methods to examine caregiver coping me chanisms (Abedduto; Smith et al., 2007), well-being (Abedutto; Greenberg et al., 2004 ; Magana & Smith 2006; Smith), and stress levels (Boyd) without acknowledging the larg er construct of lived experience. Additionally, they fail to provide accounts from di verse perspectives (Dyches, et al, 2004; Zionts & Zionts, 2003). In fact, much of the research in the field of ASD completely disregards or minimizes race (Connors & Donellan, 1998). Qualitative research does exist which examines care giver lived experience. For instance, in Finding Marisa: A MotherÂ’s Story (Rubin, 2007), a mother of a daughter with autism provides a first hand account of her da y-to-day experiences. However, this account is told from the perspective of the mother, who has a graduate degree in special education. Further, the account does not situate th e story within the larger body of literature on lived experience (i.e. coping, stress well-being) nor does it attempt to
19 provide systematic analysis, recommendations or con clusions (Rapin, 2007). Green (2003) examines the stigma associated with having a child with a disability, including autism. However, a mixed methods approach is used w here stigma is both quantified, through a regression analysis, and qualified, throu gh the use of interactive interviews and narrative. Further, the study was limited to mother s of children with varied disabilities, not autism exclusively, and 81% of participants sel f-identified as Caucasian, thus indicating a need for additional research which exa mines autism (Dyches et al., 2004; Zionts & Zionts, 2003), lived experience, and cultu re (Dyches; Harry, 2008) from purely qualitative measures. Parents of children with ASD have also used the internet as a venue for self-publishing their narratives. Fleischmann ( 2004) analyzed these narratives and discovered that many parents described the diagnosi s of ASD as a turning point in their lives. In addition, while several narratives addres sed the challenges associated with raising a child with ASD, the majority of the narra tives also expressed the experience, and associated changes parents have endured, as pos itive. Research indicates that exchanging narratives facilitates the coping proces s and a change in perception for parents (Huws, Jones, & Ingledew, 2001). Subsequent ly, the change in perception can lead to a more positive view of the diagnosis (Flei schman). This indicates a need for further narrative exploration of caregiver lived ex perience related to raising a child with autism (Fleischman). Process Â“The loss of the idealized child is like a grievi ng process. It takes a long time, it never ends, it is constantly changing and it is a journeyÂ…Having a child with special needs transforms raising a child into an unanticipated and unpredictable journey. From hearing the diagnosis t o embracing the disability, a life altering experience occursÂ” (OÂ’Neil, 2008, p.1 ).
20 Critical to the larger construct of lived experienc e is the process caregivers and families go through following the diagnosis of a ch ild with a disability. Specifically, life course theory emphasizes the importance of time, co ntext, process, and meaning on individual development and family life (Bengtson & Allen 1993). The social context in which the diagnosis occurs, along with the prior ex periences of the caregiver, impacts the way in which the diagnosis is received by the careg iver. Kubler-Ross (1969) outlines stages of mourning that families experience followi ng the diagnosis of a child with a disability. However, Seligman & Darling (1997) caut ion that this progression should be viewed as a guide rather than a prescription for fa mily behavior as families are complex in nature and the impact of a diagnosis is unpredic table. Further, this is one commonly applied construction of the process families go thr ough in learning and living with a diagnosis of disability or illness. This process ha s been applied not only to disabilityrelated literature, but also literature which addre sses death and dying (Zell, 2003). The stages include (1) Denial; (2) Bargaining; (3) Ange r; (4) Depression; (5) Acceptance Denial is thought to serve as a buffer for the pare nt who is experiencing grief, in effect, denial allows the parent the opportunity to gather the inner strength necessary to acknowledge, accept and manage the diagnosis (Krico s, 1999). Parents report feelings of numbness, confusion, and helplessness (Seligman & D arling, 1997) Denial is reinforced through the deficit-based perspective, which emphas izes the negative effects of the disability, used by many professionals (Ho & Keiley 2003). Further, this deficit-based perspective not only inhibits parentsÂ’ ability to a ccept the diagnosis but also hinders the development of collaborative relationships with ser vice providers.
21 The bargaining phase involves parents engaging in a ctivities, such as donating their time to a worthy cause, turning to religion, and seeking out all possible therapeutic options in an exchange for an improvement in their childÂ’s condition (Ho & Keiley 2003; Seligman & Darling, 1997). When these options fail to result in an improvement in their childÂ’s condition, parents may experience anger, th e next stage in the mourning process, regarding their childÂ’s diagnosis. This anger is of ten projected onto spouses for lack of support and failing to create a child without a dis ability, professionals for failing to heal the child, and God for allowing the situation to oc cur (Seligman & Darling). Anger can be exacerbated guilt on the part of the parents, la ck of support from school and/or community, and an unavailability of services (Ho & Keiley; Seligman & Darling). Depression and acceptance are the final two stages caregivers experience when faced with raising a child with a disability. Once the anger has subsided, parents can fall into a depressive state upon realization of the chr onic nature of their childÂ’s disability. When parents are able to discuss their childÂ’s shor tcomings with relative ease, achieve a balance between encouraging independence and showin g love, collaborate with professionals to identify realistic goals and objec tives, pursue personal interests not related to their child, discipline without undue gu ilt, and abandon overprotective/overly harsh behavior towards their child, then acceptance has been achieved (Hornby, 1994). While these phases provide a framework for underst anding the process of coping with the diagnosis of a child with a disability, th e way in which families experience and progress through these phases is not universal and is impacted by factors such as culture, family structure, and lived experience (Seligman & Darling 1997).
22 In an effort to move away from models outlining li near stages of mourning, such as Kubler-RossÂ’ (1969), Vincent (1990) developed th e following model which Â“emphasizes a more continuous movement towards advo cacy and acceptanceÂ” (Ho & Keiley, 2003, p. 242). The stages include: 1. Questioning if the diagnosis is correct 2. Exploring how family members and children make mean ing of the diagnosis 3. Investigating who can help and how much 4. Optimizing the potential of treatment 5. Becoming an advocate for families of children with disabilities VincentÂ’s (1990) model is representative of a colla borative-resource perspective, in the way that it explores the demands placed on f amilies following a diagnosis and the resources available to assist in meeting these dema nds. Additionally, the model facilitates the development of a collaborative partnership betw een families and service providers where available and appropriate resources are the f ocus (Ho & Keiley, 2003). Another model representative of the collaborativeresource perspective is the Family Adjustment and Adaptation Response (FAAR) mo del (Patterson & Garwick, 1994). The FAAR model includes two phases, adaptati on and adjustment. The model maintains that the ability of parents to cope with their childÂ’s disability changes over time and is impacted by different transitions, or crises within both the life cycle of the parent (divorce) and the life-cycle of the child (entering school). The adjustment phase is defined as a period of stability within the family, whereas the adaptation phase is the familyÂ’s response to the crisis or transition. In o rder to achieve feelings of adjustment, the family must adapt or change to meet the demands imp osed by the crisis (Patterson, 2000). Accessibility of resources, the social and historic al context in which the crisis occurs, and the timing of the crisis or transition within the l ife course also has implications for how
23 well a family is able to adjust (Seltzer & Greenber g, 1999; Wethington, Cooper & Holmes, 1997). Coping/stress and caregiver burden/satisfaction Caring for a child with ASD can be a challenging task due to the many stressors tha t are experienced by the primary caregiver. Namely, stressors include: the day to da y stress arising from care giving, a lack of caregiver confidence in their ability to handle the childÂ’s behavior, the absence of support services, and the realization that there is no cure for ASD (Twoy, Connelly, & Novak, 2007). These stressors make coping mechanisms essential fo r caregivers who are faced with the challenge of raising a child with ASD (Two y, et al., 2007). Research has shown that caregivers of children with ASD have a higher level of stress (Duarte, Bordin, Yazigi, Mooney, 2005) than caregivers of children w ith intellectual disabilities other than ASD (Olsson & Hwang, 2001). Further, caregivers of children with ASD experience higher levels of stress than caregivers of children with Down Syndrome and typically developing children (Bouma & Schweitzer, 1990; Duma s, Wolf, Fisman, & Culligan, 1991; Fisman, Wolf, & Nah, 1989, Holroyd & MacArthu r, 1976; Wolf, Noh, Fisman, & Speechley, 1989). Also, higher levels of stress wer e evident in caregivers of children with ASD than caregivers of children with cystic fibrosi s (Bouma & Schweitzer). Studies looking at differences between mothers and fathers of children with ASD suggest that mothers tend to exhibit higher levels of stress tha n fathers (Hastings, 2003; Hastings et al., 2005). Additionally, fathers have been found t o use less problem-focused coping strategies than mothers (Essex, Seltzer, & Krauss, 1999; Hastings & Johnson, 2001). The majority of research has examined stress levels of the mother while little emphasis has
24 been placed on paternal stress and coping (Quinn, 1 999; Katz, 2002; King, King & Rosenbaum,1996). Thus, there is a need to examine s tress and coping from a dualistic perspective. In addition to findings on caregiver stress levels, research indicates that caregivers of children with ASD report lower levels of marital satisfaction (Fisman et al., 1989; Wolf et al., 1989; Rodrigue, Morgan, & Geffken, 199 0, 1992), higher levels of depressive symptoms (Fisman; Wolf; Rodrigue, et al., 1990, 199 2), less parenting competence and less family adaptability (Rodrigue) than caregivers to children with Down syndrome and caregivers of typically developing children. Green (2007) found that mothers of children with di sabilities reported sociocultural constraints rather than emotional distress in raising their children with disabilities. However, despite the socio-cultural c onstraints, mothers perceived valuable benefits to having a child with a disability; these perceived benefits are decreased by the impact of perceived stigma on the emotional distres s of the mother. Gray (2002), concurred that the perception of stigma by the care giver may contribute to the overall stress and depression experienced by the caregiver, caregiver self-efficacy has also been shown to contribute to levels of anxiety and depres sion (Hastings & Brown, 2002). Lastly, parents of children with ASD are more likel y to perceive that their child had a more difficult temperament than parents of children with mental retardation and parents of typically developing children (Kasari & Sigman, 1997). These increased levels of stress, depressive symptoms, marital dissatisfactio n, and anxiety emphasize the importance of coping strategies to minimize the imp act of the stressors.
25 Although research exists which examines the lived e xperience of primary caregivers and the coping mechanisms they employ wh en faced with raising a child with ASD, this literature fails to examine these constru cts through purely qualitative methods. Current literature in the area of stress, coping an d well-being has assessed levels of stress and well-being and methods of coping through the us e of survey instruments. The Resiliency Model of Family Stress, Adjustment, and Adaptation is frequently used and is designed to measure a familyÂ’s ability to adjust an d adapt to stressors (McCubbin & McCubbin, 1989). The Resiliency Model includes five propositions which include: 1. The pileup of family demands (stressors, strains, t ransitions) is related to family adaptation, and this is a negative relationship; 2. Family typologies based on specific strengths of th e family system (cohesion, adaptability, family hardiness, family time and rou tines) are related to family adaptation, and this is a positive relationship; 3. The family resources are related to family adaptati on, and this is a positive relationship; 4. The family's positive appraisal of the situation is related to family adaptation, and this is a positive relationship; and finally 5. The range and depth of the family's repertoire of c oping and problem-solving strategies when employed to manage a crisis situati on are related to the level of family adaptation, and this is a positive relations hip (McCubbin, 1993, p. 55). While this model has been shown to effectively illu strate family coping and adaptation methods, it does not achieve a level of depth that can be attained through the use of qualitative interviewing techniques such as interactive interviewing. More
26 specifically, information regarding changes in copi ng mechanisms over the life course is not readily available and little research has been conducted with focuses specifically on caregivers of children with ASD (Gray, 2006). Many studies examining coping strategies and stress levels of parents of children with ASD required participants to respond to instru ments utilizing Likert scale questions (Abedduto, et al., 2004; Greenberg, et al., 2004; M agana & Smith, 2006; Orsmond, Seltzer, Greenberg, & Krauss, 2006; Smith et al., 2 008; Twoy et al., 2007). Results of current research, both quantitative and qualitative revealed that caregivers of children with ASD employed varied coping strategies such as positive reframing of potentially traumatic situations (Dunn, Burbine, Bowers, & Tant leff-Dunn, 2001; Hastings et al, 2005; Hastings & Johnson, 2001; Twoy), seeking supp ort from family and friends (Gray, 2006; Twoy), families facing similar situations (Gr ay; Twoy,), spiritual beliefs (Gray; Hastings; Twoy), and agencies and programs (Gray; T woy). Strategies used by caregivers were categorized as either internal or external str ategies. Internal coping strategies came from within the family: communication, relationship and cognitive, whereas external strategies came from outside resources: community, social contacts, spiritual support. Hastings et al. (2005) further characterized copin g strategies utilized by caregivers of children with ASD into four dimension s: 1. Active avoidance coping: self-blame, use of drugs/a lcohol to cope, giving up, distractions to avoid the stressor 2. Problem-focused coping: seeking social and emotiona l support from others, identifying potential strategies 3. Positive coping: humor, positive reframing, accepta nce
27 4. Religious/denial coping: comfort in religious beli efs, prayer, meditation, refusal to believe what has happened Caregivers utilizing active avoidance strategies we re found to display higher levels of stress and increased mental health proble ms. Additionally, results from the study suggested that positive reframing of stressful life events, such as the diagnosis of a child with ASD, was related to lower levels of depression in both mothers and fathers of children with ASD. Longitudinal study results indic ated that the total number of coping strategies used by caregivers decreased over time a nd there was a shift towards more emotion-focused means of coping (Gray, 2006). Research also revealed that coping strategies appea r to differ across cultures and gender. Specifically, non-English speakers were fou nd to rely more heavily on spiritual support than do their English-speaking counterparts and Asian-Americans relied on reframing whereas Caucasians relied more so on pass ive appraisal, or avoidance of problems (Twoy et al., 2007). Research on African-American and Latino(a) caregive rs is limited; research that is available is dated and is rarely specific to rai sing a child with ASD. However, research on Latino caregivers with a child with a disability not specific to ASD indicates a high level of need for both family (Magana & Smith, 2006 ; Skinner, Bailey, Correa, & Rodriguez, 1999) and formal supports (Skinner et al ., 1999). Literature addressing the coping strategies of African-American families incl uded three key factors, religious connectedness, culture/ethnicity, and family struct ure and functions, which influence the Â“interpretations, coping resources, and adjustments of African-American families with children with disabilitiesÂ” (Rogers-Dulan & Blacher 1995). Further, greater resilience
28 and acceptance has been documented among ethnic min ority families when compared to European American families and mothers (Harry, 2002 ). These findings warrant additional research addressing coping mechanisms wi thin the context of family, disability, and ethnicity (Harry). Findings also in dicate the need for face-to-face, qualitative research addressing the both coping str ategies and caregiver burden/satisfaction (Arzubiaga, Artiles, King, & Ha rris-Murri, 2008). Narrative Â“The people who come to see us bring their stories. They hope they can tell them well enough so that we understand the truth of thei r lives. They hope we know how to interpret their stories correctly. We have t o remember that what we hear is their story Â” (Coles, 1989, p. 7). Narrative inquiry is much more than the simple tell ing of stories (Clandinin, Pushor, Orr, 2007). Rather, narrative is a complex methodology which incorporates interpretation, art, literary practices, and the go al of capturing the lived experience of others. This methodology offers insight into the co mplexity of human life and the way in which an individualÂ’s role, such as that of a careg iver to a child with ASD, can be understood within the larger context of their lived experience (Liamputtong & Ezzy, 2005). Specifically, narrative allows us to underst and the impact of raising a child with ASD on the life course of the caregiver (Krauss, Se ltzer & Jacobson, 2005). According to Ellis (2004), the goal of this qualitative form of research is to create a sense of social awareness and empathy. Further, researchers seek to evoke Â“emotional experience in readers, give voice to stories and groups of people traditionally left out of social scientific inquiry, produce writing of high literary/artistic quality, and improve the readersÂ’, participantsÂ’, and authorsÂ’ livesÂ” (p. 30).
29 Disability narratives have played a significant rol e in contributing to the dialogue about disability and lived experience. Specifically self-published narratives of parents with children with autism are evident in both print and internet arenas. Analyses of these narratives indicate that telling oneÂ’s story is par t of the coping process that many parents go through when dealing with an ASD diagnosis. Furt her, constructing a new story allows caregivers to positively reframe the ASD dia gnosis (Fleischman, 2004). Positive reframing can subsequently lead to lower levels of depression and improved well-being (Gray, 2006). Disability narratives have also given a voice to those individuals who have previously been left out of the literature because of their association with disability. Additionally, they provide an authentic account of what it is like to live with a disability or care for someone who has a disability. Tradition al quantitative studies are limited in that they are unable capture the Â“richness, complex ity, and depthÂ” (Morris, 1991, p.82) as qualitative approaches can. Quantitative researcher s see themselves as separate from the researched and strive to obtain results which can b e generalized to larger populations. Narrative inquiry does not share these values. Rath er, the narrative approach to inquiry emphasizes the importance of building relationships with those we study, attempting to see the world through their eyes, and re-presenting the experience in a manner which is true to their everyday lives (Ellis, 2004). To ensu re the research participantsÂ’ voice is accurately re-presented, many qualitative researche rs negotiate, through member checks, their research texts with their participants (Pusho r & Murphy, 2004). These negotiations often facilitate additional dialogue between the re searcher and participants and create conditions for further thought and interaction with the text (Clandinin et al., 2007). Additionally, the actual process of creating a stor y is especially critical for those
30 individuals experiencing high levels of stress or t ransition, such as those associated with an ASD diagnosis, in that an individualÂ’s ability t o cope is influenced by the stories they tell about themselves (Gergen, 1988; Sarbin, 1986 a s cited in Fleischman, 2004). Narrative inquiry does not attempt to control nor o perationalize the contexts in which the research is conducted. Instead, narrative researchers acknowledge that researcher bias and experience, research contexts, the lived experience of participants, along with additional factors, play a role in the t elling and interpretation of the story (Clandinin et al., 2007). This acknowledgement of r esearcher presence in the story creates a multi-layered account, thus adding to the depth and richness of the text. The concept of Â“life-story meshingÂ” (Bruner, 2004, p. 6 99) is an important part of this process. Essentially, in order for the storyteller and the listener to connect over story, they must share a Â“deep structure about the nature of a lifeÂ” (p. 699), otherwise one party may feel disconnected from what the other is saying. Â“The remembering makes it now. And sometimes rememb ering will lead to a story, which makes it forever. ThatÂ’s what stories are for. Stories are for joining the past to the future. Stories are for those late hours in the night when you canÂ’t remember how you got from where you are. Stories ar e for eternity, when memory is erased, when there is nothing to remember except the story.Â” (OÂ’Brien, 1990, p. 128). The sociology of storytelling posits that lived exp erience is constructed through the stories an individual tells about their lives. Storytelling is more than a way to inform others about our lives. Rather, stories assist in i dentifying purpose and meaning in our lives as well as in the construction of our identit y (Berger & Quinney, 2004). A good story is one which resonates with some part of our life. It brings us to the realization that our stories are worth telling and gives us the cour age to do so (Coles, 1989). Expressing
31 oneself through autoethnographic writing, allowing oneÂ’s vulnerability to infiltrate the page, has a dualistic purpose. It not only facilita tes the process of self-exploration and discovery but it encourages the reader to express h is or her feelings and compare their life experiences with those of the storyteller (Ellis, 2 002). Â“Good autoethnography works toward a communitas, where we might speak together of our experiences, and commonality of spirit, companionship in our sorrow, balm for our wounds, and solace in reaching out to those in need as wellÂ” (Ellis, 1998 ). The idea of reflexivity as posited by Bruner (1990), is an essential comp onent in the process of interpreting our life stories. Speci fically, reflexivity involves reflecting on the past within the context of the present, however it is important to note that Â“neither the past nor the present stays fixed in the face of thi s reflexivityÂ” (Bruner, 1990, p. 109). The ways in which we reflect on past experience, as wel l as the cultural context in which this reflection takes place, serves as a mechanism for c ontinuous interpretation of our storied lives. Thus, certain stories may be more or less me aningful depending on the context in which they are reviewed (Bruner). Essentially, we b ecome the narratives through which we tell about our lives (Bruner, 2004). The way in which we tell our life stories is guided by the various processes associated with the cultur e with which we identify. More specifically, these processes Â“structure perceptual experience, to organize memory, to segment and purpose-build the very Â“eventsÂ” of a li feÂ” (Bruner, 2004, p. 694). Essentially, the act of self-telling our life story is interpretive in nature; it is these interpretations which contribute to the continuous renegotiation of our life as we see it. This act of self-telling can be referred to as the autobiographical method (Bruner, 1995). However, it is cautioned that autobiography cannot be used as a means of referring
32 to Â“life as livedÂ” (p. 161). Rather, autobiography is the act of constructing or creating a life; an interpretive process. The autobiographical process involves combining witness interpretation and stance while at the same time maintaining a semblance of truth and negotiability, or the acceptance of the autobiograp herÂ’s life into the larger Â“community of livesÂ” (p. 169). Witness refers to the life events that one has experienced either first hand or as an observer. The goal is to portray experienc e as Â“factsÂ” (p. 167). Interpretation involves situating the facts within the larger cont ext of experience in order to provide them with a Â“wider significanceÂ” (p. 167). Stance refers to oneÂ’s view of the Self and plays a role in balancing the interplay between witness and interpretation (Bruner). The result is a life construction that is a product of the culture with which we identify. The validity and reliability or Â“truthÂ” of research involving storytelling has been questioned by positivists, however, it is the exten t to which the story is able to Â“evoke the vividness of lived experienceÂ” (Berger & Quinney, 2 004, p. 1) on which qualitative forms of research base the measure of truth. Bruner (1990 ) refers to validity as an Â“interpretive conceptÂ” (p. 108) in that it is subjective in natur e. Catalytic validity (Lather, 1986) assists in helping study participants, as well as researche rs, in understanding their experiences so that they feel empowered to transform their lives. Further, catalytic validity requires the researcher to fully examine biases, associations, a nd self-interests and the role they play in interpretation (Cohen, Manion, & Morrison, 2000) Life Course Theory The life course theory looks at the life course of individuals through a historic, social, and cultural context where life course is d efined as a Â“sequence of socially defined events and roles that the individual enacts over ti me" (Giele & Elder 1998, p. 22). In life
33 course theory, transition s (Elder, 1985) or turning points (Clausen, 1995) are viewed as events that have the capacity to alter the trajecto ry of the life course. The diagnosis of a child with ASD would classify as a transition or tu rning point. Further, the timing of this event combined with socio-historical conditions and geographic location provides a framework for further examining the ways in which t he diagnosis of a child with ASD impacts the primary caregiverÂ’s adult development ( Seltzer et al., 2001). Research on stress and coping illustrates that caregivers of ch ildren with disabilities tend to modify the ways in which they cope over time (Gray, 2006). How ever, the social context in which the transition occurred cannot be ignored. It is on ly within the last 33 years that a Â“climate of supportÂ” (Seltzer, p. 266) has been pro vided for caregivers of children with disabilities. Specifically, prior to changes in leg islation, shifting attitudes regarding disability, and improved services, the social conte xt in which families of children with special needs lived was not conducive to the provis ion of a climate of support. For instance, it is only with the enactment federal legislation such PL 94-142 Education for All Handicapped Children Act in 1975 that supports have been readily available to individuals with disabilities. Consequ ently, the passage of this legislation altered the previous social context in which indivi duals with disabilities did not have access to the services mandated by the passage of P L 94-142. Thus, caregivers raising a child with ASD prior to the enactment of this legis lation may have had more difficulty coping and managing the day-to-day challenges of th e disability as supports were not readily available. Specifically, caregivers in more recent studies (Seltzer et al., 2001) reported a more positive life course adaptation tha n caregivers who did not have access to the service provisions mandated by PL 94-142.
34 Life course theory emphasizes the interplay of trajectories and transition s within the social context in which the individual resides. Specifically, the timing of the roles to which the caregiver must adapt is critical to the i mpact the transition has on the trajectory of the life course. Research indicates that caregiv ers of children with ASD must continuously adapt and change roles in order to mee t their childÂ’s changing needs throughout the life course (Bristol & Schopler, 198 4; Gray, 2006). Specifically, the family stress proceeds developmentally with early s tressors including managing the significant needs of the child and chronic fatigue from constant supervision. These early stressors are transformed into new stressros, such as the permanency of the condition and community acceptance, as the child moves through th e developmental phases of early childhood, adolescence, and adulthood. Specifically levels of stress intensify as the child enters adolescence (Seltzer, Krauss, Orsmond, Vesta l, 2001). The transitions associated with the progression of a child with ASD from adole scence to adulthood influence the roles caregivers must take on; the timing, duration and sequencing of these roles can thus impact the overall trajectory of the life course (M acmillan & Copher, 2005). Much of the research conducted within the framework of a life course perspective examines chronic disease and the aging process (Ans tey, 2008; Dupre, 2008; Sayer & Cooper, 1997; Shlomo & Kuh, 2002). Most often, the long term-effects of a chronic disease and its impact on the life course of the pa tient, from birth to death, has been examined, along with the concept of successful agin g, or the ability to effectively adapt to transition s in the life course. Less frequently, the life-cour se approach has been used as a framework for examining criminal offenders (Hanks & Carr 2007; Laub, Sampson, & Sweeten, 2006; Nagin, Farrington & Moffitt, 1995) a nd the evolution of deviance and
35 criminal activity along with tuning points within t he life course which may have led to criminal behaviors. While this research does not ad dress the concept of disability within the life course, this research does provide a frame of reference for the current study. Particularly, findings from the aforementioned stud ies indicate that behaviors, attitudes, and roles vary over the life-course and are depende nt on various factors such as age, social contexts, and life events, or turning points which can alter the trajectory of the life course. However, little research has been conducted which e xamines how and why stress and coping changes over time (Gray, 2006; Hastings et al., 2005; Seltzer et al., 2001). Additionally, little research addresses the change in the life course of the primary caregiver. What were their goals prior to the trans ition of diagnosis of a child with ASD? How have these goals changed since the transition? Moreover, the life-course perspective views significant events, such as the birth of a ch ild and the diagnosis of a child with a disability as a transition which impacts the trajec tory of the caregiverÂ’s life-course. Chapter 3 will outline the methods used to examine the lived experience of diverse caregivers of individuals with autism in th e current study.
36 Chapter Three Methods The purpose of this study was to examine the lived experiences of diverse primary caregivers in raising a child with ASD. The study w as situated within the theoretical framework of the life-course theory posited by Elde r (1985). Specifically, effects of the transition in the life-course that caregivers experience when a child is diagnosed with ASD were examined along with caregiver burden/satis faction, coping mechanisms, and other constructs which contribute to the larger con cept of lived experience. This study utilized a narrative methodology with interactive i nterviewing techniques; in particular, the interviews were treated as narratives. In addition to examining the lived experiences of p rimary caregivers of children with ASD, I explored my own experiences from a dual istic perspective: as a family member of an individual with ASD and as a researche r of othersÂ’ lived experience in raising a child with ASD. Richardson (2001) acknowl edges the importance of Â“getting personalÂ” (p. 31) in research. Writing-stories (Ric hardson, 1997) explore the intersection of the personal and political and allow us explore our own worlds in a way that allows us to feel a Â“connectedness to othersÂ” (Richardson, 20 01, p. 36). Â“Writing about your life in writing stories can be a sacrament. By this I mean two things: experiencing the flow of writing and experi encing a connectedness to others. The sense of time and place as separate is undermined, re-understood as deeply related. As you write, you can feel yourself connected to others; the meaning you construct about your life connects you to others, making communion-community-possibleÂ” (p. 36-37).
37 In order to attain this feeling of connectedness to study participants, I included my own story and journey with autism as part of the cu rrent study. Richardson (2001) also notes that Â“writing is a method of discoveryÂ” (p. 3 5), we write in order to learn something. My aim for the study was to simultaneous ly discover what it is like for three caregivers who are currently raising a child with A SD and how my own experiences as a family member of an individual with ASD impacted my interpretations of participant stories. It is important to acknowledge that this r esearch study was important to me as an individual, therefore, it was essential that my voi ce not be silenced in order to achieve the Â“objectivityÂ” which is sought after in traditional quantitative research. In this study, my writing story served to nurture my own individualit y (Richardson) while, at the same time, further my understanding of both my life and participant lives. The life stories, or personal narratives (Riessman, 2002) told by the participants revolved around a specific event in their lives, na mely, the diagnosis of a child with ASD. Narrative is a form of Â“retrospective meaning makin gÂ” (Chase, 2005, p. 656) where individuals make sense of prior actions and events. Subsequently, interview data was transformed into a cohesive narrative which Â“expres ses emotions, thoughts, and interpretationsÂ” (Chase, p. 656) from both particip ant and researcher perspectives. In this particular study, the terms narratives and stories were used interchangeably. The use of interactive interviewing (Ellis, 2004) and responsive interviewing (Rubin & Rubin, 2005) techniques were used in order to facilitate a multi-layered account of lived experiences. Interactive interviewing emph asizes not only the participant story, but the story of the interaction between researcher and participant (Gubrium & Holstein, 2002). Both parties bring their own stories and exp eriences to the table and it is the
38 intertwining and negotiation of these stories that is the focus of interactive interviewing. For example, in a study conducted by Kiesinger (199 8), interactive interviewing is used to Â“reflexively connect our experiences that use Ab bieÂ’s life story to challenge and deepen my understanding of my own life, and my own experiences to heighten my comprehension of hersÂ” (p. 2). The focus of responsive interviewing (Rubin & Rubi n, 2005) is on the depth of understanding attained from the interview experienc e rather than the breadth of information gathered. This method acknowledges that the experiences, personalities, and feelings of the interviewer and interviewee interac t and influence each other. Thus, the researcher must have sufficient self-awareness to r ecognize any biases or expectations that may exert an unintended influence on the parti cipant. Personal involvement and selfreflection are encouraged as these practices facili tate empathy and improve the overall quality of the interview (Rubin & Rubin, 2005). The personal journey of the researcher should be intertwined within the family stories thr ough the use of problematics and metanarrative reflections with the goal of illustra ting the interpretive process of the researcher (Peshkin, 2000). To this end, I intertwined my story with the parti cipant stories in a manner that allowed me to connect my experiences with participa nt experiences, thus heightening the understanding of both storied lives, or narratives. While I have never had the experience of raising a child with ASD, I do have a family mem ber who is diagnosed with AspergerÂ’s Syndrome, which is one of the conditions subsumed under the umbrella term of ASD. Further, I have worked extensively with stu dents with ASD in my professional role as an educator. While these experiences do not mirror the experiences of the
39 participants, they did influence the interactions b etween myself and study participants, in that we share a common association with disability. Additionally, my previous experiences also influenced my interpretation of th e participantsÂ’ lived experiences; this impact was explored through the use of metanarrativ e reflection (Peshkin, 2000) which is interwoven with the participant stories to create a multi-layered account. In interactive interviewing, the researcher is not limited to a predetermined list of questions (Wood, 2001). Rather, the interview is se mi-structured and allows the researcher to probe using open-ended questions in o rder to achieve a greater depth of understanding of the lived experience. Further, by clarifying, prompting, and questioning the participant, the researcher encourages the part icipant to disclose the knowledge resulting from their lived experience (Wood) of rai sing a child with ASD. Participant disclosure assisted me in determining how and when to use the topics identified on the interview protocol, thus making the interviews them selves conversational in nature. A proper interactive interview facilitates the develo pment of participant as researcher (Wood). Specifically, the participant is able to ma ke connections and identify themes within the telling of their lived experience. The s emi-structured nature of the interview allowed for differentiation in the content of parti cipant stories. Specifically, participants were not restricted to the categories set forth in the interview protocol and had the freedom to address topics that I may not have initi ally anticipated. Due to the dynamic nature of this interviewing technique, the intervie ws reflect participant individuality and do not necessarily address identical topics. In ord er to facilitate the interactive nature of the interviews, I initially provided participants w ith a tape recorder that they could use to document their experiences and feelings without the need for the researcher to be present.
40 The intended purpose was to establish a foundationa l relationship between the researcher and participant in that I would have used the infor mation on the tape as a building block for subsequent conversations. However, as none of t he study participants indicated an interest in using the tape recorder, I had to come up with an additional strategy to facilitate the interactive nature of the interviews Specifically, I disclosed portions of my family story during the interviews in an effort to relate our experiences. This act of sharing initiated a commonality between the partici pants and myself. Additionally, I noticed that study participants often inquired abou t my family story during the course of the interview. This dialogue allowed for interactio n between both parties, thus assisting in the development of a multi-layered account where th e interaction between the researcher and participants is evident throughout the particip ant stories. Table 1 outlines WoodÂ’s (2001) procedures for cond ucting the interactive interview: Table 1 Interactive Interviewing Procedures Step Description Starting the interview Explain the purpose of the interview Assure participant of anonymity Explain that the researcher is trying to learn from the participant Obtain participant permission before tape recording or taking notes
41 Letting the informant lead Find the balance between keeping the interview focused on the topic, but allow the participant to define the content of the discussion Probing Stimulate the participant to provide more information without injecting yourself too much into the interaction Remember that sometimes the best way to probe is to remain silent and wait for the participant to continue. The interactive nature of the interviews is consis tent with LatherÂ’s (1986) concept of reciprocity, which implies a Â“give and takeÂ” bet ween the researcher and study participants. A status shift between the researcher and researched should be evident, specifically, the researcher should transform from stranger to friend over the course of the study. Reciprocity facilitates the empowerment of t he researched and contributes to the overall construction of meaning. In order to attain full reciprocity, Lather suggests that interviews be conducted in a manner that is interac tive. Specifically, researcher selfdisclosure is essential. Additionally, sequential i nterviews should take place in order to Â“facilitate collaboration and a deeper probing of r esearch issuesÂ” (p. 266). Participants should also have a role in the negotiation of meani ng. In this study, member checks provided participants with the opportunity to negot iate the researcherÂ’s initial
42 interpretation of the interview transcriptions. Nam ely, participants were provided with both interview transcripts and the story created by the researcher which emerged from the transcripts. Participants were then encouraged to a dd, subtract or modify the story in a manner that they believed to be consistent with the ir lived experience. The interviews were conducted face-to-face, in the participantsÂ’ homes, in order to facilitate rapport development and a positive re lationship between myself and the study participants. This relationship provided the founda tion necessary for the depth of personal disclosure I was hoping to achieve through this stu dy. Respondents included primary caregivers from three families; one family of African-American decent, another of Caucasian decen t, and one family of Hispanic decent. The family of Caucasian decent is my family story. Including the story of my family and their experiences in raising a child wit h ASD served to enhance the trustworthiness of the study. Specifically, the act of experiencing the emotionality associated with having a family member diagnosed on the spectrum contributed to the overall development of the narrative. This associat ion is not something I have ever fully explored nor understood. Therefore, engaging my fam ily and myself in the cathartic process allowed me, as both family member and resea rcher, to experience disability in a manner which was previously unknown. Current literature on ASD emphasizes the need for r esearch on families from diverse cultural backgrounds (Dyches et al., 2004; Magana & Smith, 2006). While the current study did not seek to generalize to the cul tures represented in the study, inclusion of diverse participants provided preliminary data w hich will be used as part of a future research agenda addressing culturally diverse famil ies of children with ASD.
43 Data consist of demographic information and intervi ew transcripts from each of the three in-depth interviews conducted with the th ree primary caregivers selected for participation in the study. Interviews were audio-t aped and conducted in English at a mutually agreed upon time and setting, in the famil iesÂ’ homes. The interviews were transcribed by an outside source. However, the tran scriptions were reviewed for accuracy by both researcher and study participants. The firs t interview served as a rapport building discussion in an effort to establish a foundation o f trust between the participants and me; the concept of lived experience was addressed along with an explanation of interactive and responsive interviewing. The areas that I hoped to address during the course of the interview were discussed. Respondents were invited to add to or subtract from these areas of interest so that their interview was tailored to reflect their individual lived experience. Additionally, each participant was provided with a tape recorder so that they could begin the process of telling their stories without the pr essure of having a researcher present. However, when a subsequent date was scheduled to pi ck up the participant recorders, all participants indicated that they would rather speak directly to me than into the recorder. The second interview involved documenting the prima ry caregiversÂ’ stories about raising a child with ASD. Specifically, the intervi ew protocol provided in Appendix B served as a fluid and dynamic tool on which to base the interviews. Participants were asked to detail their lived experience in raising a child with ASD. I asked participants to begin by telling me Â“their storyÂ” as it related to raising a child with autism. Based on the information provided by the participants, I asked c larification questions as needed. Additionally, if participants did not initially add ress the categories outlined in the
44 interview protocol, I addressed them during followup questioning which occurred at the end of the second interview. The final interview allowed time for member checks. Specifically, study participants were asked to authenticate the transcr ipt data, as this process serves to enhance the credibility of the study (Lincoln & Gub a, 1985). None of the participants noted any inaccuracies within the transcriptions, h owever, two of the three indicated an interest in viewing the final Â“storyÂ” once it had b een completed. In addition to the audio taping of the interview content, I utilized field n otes to document any environmental factors which I thought may be pertinent during the data analysis phase of the study. These factors were used in to assist in the develop ment of the setting and their impact on the overall tone of the interview. However, this protocol was breached during one of t he interviews. When I arrived at the home of the caregiver of Hispanic decent, sh e appeared disappointed that she would not be able to share her story with me on tha t particular day. As we had spoken on the phone several times prior to the initial meetin g and because I did not want to damage the initial connection that we shared, I made the d ecision to move forward with the interview on the first face-to face meeting. I did, however, meet with her on several subsequent occasions to review both transcripts and the story itself. The study addressed the following research question s: 1. What are the lived experiences of diverse primary c aregivers in raising a child with ASD? a. What impact did the transition of diagnosis have on the life-course of the primary caregiver?
45 b. What coping mechanisms are employed by the primary caregivers i. Do these mechanisms differ across respondents? c. To what extent does the respondent experience careg iver burden/satisfaction? i. Do feelings of caregiver burden/satisfaction differ across respondents? Participants Participants included persons, male and female, who are primary caregivers in the process of raising their child with ASD. The caregi ver from each of the three selected families self-identified with one of the following ethnicities: 1) African-American 2) Caucasian 3) Hispanic, with each ethnicity being re presented. Families from each of the aforementioned cultures were selected due to the de arth of current research addressing the lived experiences of diverse caregivers and the ir experiences in raising a child with ASD (Dyches, et al., 2004; Magana & Smith, 2006). A gain, while this study did not seek to generalize to the larger cultural populations, t he examination of the lived experience of culturally diverse caregivers will provide prelimin ary data for future research agendas designed to specifically investigate the relationsh ip between culture and lived experience. While females are the predominant gender represente d in studies examining stress, coping mechanisms, and burden/satisfaction of careg ivers to individuals with disabilities, particularly in earlier works (Quinn, 1999; Katz, 2 002; King et al., 1996), this study did not limit participants on the basis of gender. Howe ver, the majority of individuals who responded to recruitment efforts were female. The s ole representation of the male gender
46 occurs in my family story as it was the preference of my family members that they be interviewed as a cohesive unit. As the researcherÂ’s primary language is English, al l caregivers selected for participation spoke English fluently as translation s of interview data can be difficult and have the potential to result in inaccuracy (Halai, 2007; Corbin & Strauss, 1998;). In particular, words that carry significant meaning in one culture often lose this meaning when translated into another language and culture ( Halai). Upon Institutional Review Board approval, study par ticipants were recruited through networks at the university where I hold a p osition. Specifically, the director of a program designed enhance the physical activity for students with developmental disabilities and a mentor teacher in a local school district, served as my primary means of recruitment. I provided them with recruitment broch ures (Appendix C) which described the study in user-friendly terms. Caregivers were a sked to communicate their interest in participating through the network and/or directly t o me by phone or email. Only two responses were received, one from a mother who self -identifies as African-American and one from a mother who self-identifies as Hispanic, as such, there was not a need to contact participants not selected for participation as all interested parties were included in the study. The Caucasian family selected for partic ipation was my own family. Demographic information was collected prior to the interview, through the use of a self-reported questionnaire (See Appendix A), and included: a) marital status b) ethnicity c) SES d) family structure e) age f) educ ation level g) occupation. Purposive sampling, a nonprobability method, was em ployed as there was a Â“clear rationale or criteria for selecting the participant sÂ” (Champion, 2002, para.8). Specifically,
47 this study was looking for caregivers of children w ith ASD and who self-identify with one of the following cultures: African-American, Ca ucasian, or Hispanic. More importantly, selected participants were able and wi lling to share their experience with me through interactive interviews. Variables Due to the design of this study, there was no need to manipulate an independent variable nor examine the relationship between an in dependent variable and a dependent variable. However, there were several variables wit hin the context of the study which had an influence on the results. These variables includ ed: participant gender, SES, participant-researcher rapport, family dynamics, an d researcher and participant biases. Because the aim of this study was to examine the li ved experience of diverse families from a narrative perspective, the aforementioned va riables were not controlled as their presence helped to define and inform the family sto ry as well as make a contribution to the overall dynamic and authenticity of the data. H owever, participant ethnicity and language were controlled to an extent, as criteria for inclusion indicated that participants should self-identify with one of three ethnicities as well as speak English fluently. Instruments I developed a dynamic interview protocol, which is provided in Appendix B, to include components of lived experience. Although th is instrument was developed in advance, it simply served as a guiding mechanism fo r the interviews. The protocol was not provided to study participants prior to the int erviews as the categories addressed on the protocol might have had a limiting effect on th e type of information participants chose to disclose during the interview sessions. Ho wever, the content of the interview
48 was not limited to the categories included in the p rotocol; it was dynamic in the sense that I used probing questions tailored to the level of d isclosure provided by the respondents. Subsequently, the individual respondentsÂ’ experienc es and individuality are reflected in the transcription and tend to deviate from the orig inally developed protocol as I did not want to stifle nor limit the respondentÂ’s story. Th e following categories were included in the protocol and served as a foundation on which to build a discourse on the lived experiences of raising a child with autism. A more detailed protocol can be found in Appendix B. 1. diagnosis 2. coping mechanisms 3. caregiver burden/satisfaction 4. family culture 5. service availability/accessibility 6. school experience 7. community experience/participation Data Analysis Narrative inquiry is much more than the simple tell ing of stories (Clandinin et al., 2007). Rather, narrative is a complex methodology w hich incorporates interpretation, art, literary practices, and the goal of capturing the l ived experience of others. According to Ellis (2004), the goal of this qualitative form of research is to create a sense of social awareness and empathy. Further, researchers seek to evoke Â“emotional experience in readers, give voice to stories and groups of people traditionally left out of social scientific inquiry, produce writing of high literary/artistic quality, and improve the readersÂ’,
49 participantsÂ’, and authorsÂ’ livesÂ” (p. 30). The cur rent study utilized a narrative inquiry methodology to explore the lived experiences of pri mary caregivers of children with ASD. The data obtained was explored and analyzed th rough the following methods. Frank (1995) describes the distinction between thin king with a story, and thinking about a story. The first can be termed narrative analysi s, whereas the latter is referred to as analysis of narrative (Bochner, 2006). Thinking with a story requires the researcher to engage in self-reflection and identify the differen t ways in which the story is representative of or has an effect on his/her exper ience as an individual. Further, thinking about a story involves critically analyzing the content of the story in order to identify the larger themes and patterns within the stories thems elves (Ellis, 2004). In this study, a combination of both narrative anal ysis and thematic analysis of narrative was utilized. Specifically, during the na rrative analysis phase, I provided insight into the ways in which the stories influenced me an d my future directions as a researcher, as well as my experience as a family member of an i ndividual with ASD. These experiences were interwoven into the participant st ories in a manner that simultaneously provides the reader with insight into my lived expe rience as well as the lived experience of the study participants. Field notes and problema tics (Peshkin, 2000) facilitated the interweaving of the professional story with the fam ily story. Specifically, the italicized portions of the participant narratives are illustra tive of my reactions towards and my interpretations of the participant stories. The non italicized portions represent the storied life of the participant. Kiesinger (1998) emphasize s the importance of telling a good story, which involves writing an Â“evocative, believ able accountÂ” (p. 15) that speaks to Â“not only to the minds of readers but to their hear ts, emotions, bodies, and interior selvesÂ”
50 (p. 15). I had to negotiate narrative and historica l truths in order to achieve a balance between story and accuracy of story elements includ ing Â“time, place, mood, tone, and characterÂ” (Kiesinger, p. 15). While the goal of th e study was to accurately portray the lived experience of study participants, a story whi ch is engaging to the reader was also necessary. This required me, as the researcher, to make decisions regarding inclusion and exclusion of interview related dialogue within the final narrative. The selected dialogue components are the ones which contribute to the ove rall ebb and flow of the constructed narrative, while at the same time, preserved the au thenticity of participant lived experience. In the second phase of data analysis, participant s tories were analyzed in order to identify common themes through a thematic analysis of content (Ellis, 2004; Polkinghorne, 1995). Thematic analysis involves ide ntifying, analyzing and reporting themes within the data. Specifically, the researche r plays an active role in identifying patterns/themes, selecting those which are of inter est to the researcher and the larger study and finally reporting these patterns/themes t o the readers. (Taylor & Ussher, 2001). Identified themes then served as a basis for constr ucting and organizing the larger narrative work which was designed to Â“illuminate th e content and holdÂ” (Ellis, p. 196) within the stories of the study participants. Howev er, the main focus of the analysis was the story of the participants combined with my own personal journey within the experience. Therefore, the primary mode of represen tation was narrative analysis. The story is layered with traditional analysis in o rder to gain a deeper understanding of autism and lived experience. Initi ally, the interview data was transcribed verbatim from the audio tape recordings Additionally, field notes were used
51 to identify changes in voice tone, emotion, and dem eanor that may have occurred during the interview process. These changes were noted in the margin of the transcripts. There Are Survivors (Ellis, 1993) is an exemplary piece in which the a uthor shares her experience coping with the passing of he r brother in a tragic airplane crash. Ellis shares her experience in a storied format, dr awing the reader into her pain and loss. It is only after the story has been told that she b egins to undertake a traditional form of analysis where she connects Â“lived experience to re search in sociology of emotions to engage readers in topics that are usually overlooke d by social scientistsÂ” (p. 724). After the participant stories were told and my story was interwoven through the use of metanarrative reflection, I connected the lived exp erience to research on the life-course, caregiving, ASD, and other pertinent literature tha t served to guide the interview protocol. This layer involved a thematic analysis o f narrative, namely the stories were analyzed and discussed within relevant literature. This traditional analysis comes at the end and is separate from the story, as the goal was to provide the reader with an evocative account of lived experience, not an analysis of the experience; the story takes precedence over the traditional form of analysis. In the thematic analysis phase of the study, I imme rsed myself within both the interview transcriptions and the narratives which w ere developed from the transcriptions. Through continuous readings and negotiation of the narratives, emergent themes and the themes set forth in the interview protocol were ide ntified, the latter which were informed by literature in the field. As the nature of the st udy allowed for serendipitous findings, themes were not limited to those set forth in the p rotocol. Connecting the lived
52 experience of raising a child with autism to litera ture in the field provided the reader with a deeper understanding of current issues facing car egivers and families. Validity In qualitative research, the concept of trustworthi ness, which encompasses credibility, transferability, dependability, and co nfirmability (Lincoln & Guba, 1985) have replaced the traditional terms of internal and external validity and reliability. Specifically, the credibility of the study is deter mined by the researcher and the reader (Hoepfl, 1997). The reader must be confident in the researcherÂ’s ability to respond to the research environment and study participants (Patton 1990); this study intertwines researcher reflections, or problematics (Peshkin, 2 000), within the participant story. Through the use of problematics, I was able to illu strate my responses to and interpretation of the environment and respondents. The italicized portions of the text represent my reaction to the participant; it is an internal reaction and was not communicated to the study participants. During memb er checks, the italics were removed and study participants only had access to the dialo gue that was created from the interview transcriptions. Verbatim transcriptions were also p rovided to participants. The use of problematics, along with member checks, and mainten ance of descriptive field notes, which are viewed as a lens for establishing validit y, contributed to the overall triangulation of the data (Creswell & Miller, 2000; Eisner, 1991). Triangulation of the data demonstrates that researcher interpretations a re consistent with data collected during the interviews with study participants, thus enhanc ing the credibility of the study (Lincoln & Guba, 1985).
53 Traditional quantitative researchers may perceive t he inability to generalize this study to a larger population as a limitation, quali tative research utilizes the concept of transferability. Transferability addresses the degr ee to which the findings allow us to view our experiences in a new way (Eisner, 1991). F urther, Ellis (2004) defines generalizability as the way in which the story spea ks to the reader Â“about their experience or about the lives of others they know or unfamilia r livesÂ” (p. 361). This study sought to represent the lived experiences of respondents thro ugh a storied format with the goal of evoking an emotional response within the reader, th us meeting the criteria of transferability set forth for qualitative research. Limitations and Researcher Identity While I have never had the experience of raising a child with ASD, I have worked extensively with students with ASD and have a famil y member who is diagnosed with AspergerÂ’s Syndrome. These experiences present a so urce of researcher subjectivity. However, instead of viewing these previous experien ces as a limitation of the study, they were viewed rather as a means of entre into the li ves of study participants as they provide a common ground on which to begin the explo ration of lived experience. The use of metanarrative reflections illustrated my subject ivity as a researcher and the ways in which it impacted interpretation of the data. This self-disclosure, or researcher reflexivity, contributed to the validity of the study (Creswell & Miller, 2000). Further, incorporating my own family story illustrated my vulnerability as a researcher, thus contributing to the overall reflexivity of the story. Harry (1996) posits the notion of Â“researcher perso nasÂ” (p. 296) and how these personas guide the way in which she identifies with the families she studies; her insider
54 status. This insider status, in turn, influences the decisions she make s as a researcher. Thus, it was important for me to identify my own re searcher personas and the potential of these personas to effect the decisions I made as a researcher. While I have never had the experience of raising a child with autism, I have h ad multiple experiences interacting with individuals with autism, including a family me mber, who is diagnosed with AspergerÂ’s Syndrome. I acknowledged the potential b ias as a result of these experiences and accepted the role these biases may have played in the interpretive piece of the study. In order to fully disclose these biases, I incorpor ated my own family story so that the reader may easily attain entre into my lived exper ience as the researcher of this study. Further, my identification with a Caucasian race/et hnicity also presented an issue of bias as study participants embodied both similar and dif fering cultural backgrounds. In interpreting the participant interviews, it was imp erative that I acknowledged my own biases and how these biases may have influenced the interpretations (Harry). In order to limit the bias in the overall narrative, study part icipants were provided with the opportunity to examine my interpretations for accur acy. No inaccuracies were noted and all participants indicated their satisfaction with the way in which their story was portrayed. At this point I feel as though a more thorough desc ription of my Â“family memberÂ” diagnosed on the spectrum is warranted. Tanya, by d efinition, would not be considered my family member. However, I had an extensive relat ionship with her brother and the rest of her family for a period of seven years whic h spanned through college and graduate school. I started dating Cameron when I was 20 year s old. We met in college, fell in love and spent every waking moment together. His family was my family and my family was
55 his family. We were all together on the holidays, w e went on vacations, his mom would call me Â“just to check in.Â” This was my family for seven years, they were everything to me and they still hold a special place in my heart despite the fact that the relationship between Cameron and myself dissolved a little over a year ago. This group of people represents everything a Â“family memberÂ” means to me They have been there for me in good times and bad, they have seen me at my worst a nd at my best and they have never judged. CameronÂ’s sister, Tanya, is someone with wh om I grew very close during those seven years and we still maintain a phone/email rel ationship today. Tanya is diagnosed with AspergerÂ’s Syndrome. We always had a special b ond because, according to her, Â“I got her.Â” Despite the fact that I Â“gotÂ” Tanya, I ca me to realize that I did not Â“getÂ” her familyÂ’s experience. I often reprimanded Cameron fo r the way he spoke to his sister and held back feelings of anger towards other family me mbers when I felt as though they did not treat Tanya in a way that was, according to my training, appropriate. After a major blowout between Cameron and I over the treatment of his sister, I decided I wanted to learn more about what raising Tanya was like for hi s parents. I was convinced that they would Â“take my sideÂ” and Cameron would see they err or of his ways. What I anticipated learning could not have been further from the truth I had very little knowledge about what it was actually like for Cameron and family. W hat I learned changed me in a way that I will never forget. It inspired me to seek ou t the stories of families, to really hear what they have to say and to do so without making j udgments. They are my true inspiration for this study and the reason why I dec ided to include their story and my journey within the current study. Pseudonyms have b een used throughout in order to
56 protect the identity of the interview participants. Additionally, the names of schools and identifying locations have been changed. Prologue My passion and dedication to the education of indi viduals with exceptional needs grew out of my own experiences within the education al system. This may lead you to believe that my experiences in school were so posit ive that I decided I wanted to give back what I had been given. That is only partly tru e. Truthfully, it is primarily the negative experiences which my family and I were sub jected to that continue to resonate in my memory today. Had it not been for a supportive t eacher I had in high school and the constant encouragement from my family, I wonder if I would be where I am today. I was in first grade; it was Easter time. I rememb er because we were coloring Easter Bunnies as part of an art activity. I decide d to color my bunny white because, at the time, I had a bunny at home named Abby who was an albino. I proudly brought my completed worksheet up to my teacher who looked at it, then looked at me and shook her head. Â“Heather, look at StephenÂ’s bunny, how bright ly it is colored. Why are you so lazy?Â” She added injury to insult by tearing up my picture in front of me and handing me a new blank worksheet with the instructions to make it look Â“more like StephenÂ’s.Â” I will never forget the embarrassment and shame that I fel t at that moment. This is when my self-confidence began to deteriorate. Over the years, my mother was brought in for countl ess meetings after I had (unsuccessfully) been tested for gifted not once, n ot twice, but three times. Â“She just does not have the capacity to succeed at this level,Â” th ey would tell her. Middle school was a
57 little easier because of the fact that my teachers pretty much left me alone. My parents were over the moon when they found out that I had b een accepted to the IB program at the local high school, and not wanting to disappoin t them, I decided to attend the program. I became involved in numerous extracurricu lar activities including track and cheerleading. Once again, my academics began to suf fer and my mom was summoned for a conference. All of my teachers were there, along with the IB Principal and guidance counselor. I listened while, one by one, the teache rs spoke of my failings, my lack of potential, and alternative options for my final yea r of high school. Â“I have seen absolutely no growth,Â” I think you should begin con sidering community college options,Â” Â“she is just not cut out for the rigorous nature of the program.Â” I watched tears fill my momÂ’s eyes and I felt ashamed, embarrassed, and uni ntelligent. Then it was Mr. WalshÂ’s turn to speak. He looked at me, looked at my mom an d then faced all of the teachers. Â“You are all wrong about Heather. I see tremendous potential in her and I believe that she can successfully complete this program.Â” Someho w, he managed to convince everyone to give me another chance. I will never fo rget how much his words meant to me, inspired me to become something better, to show tho se other teachers exactly what I was capable of. It was at that moment that I made the d ecision to become a teacher. I excelled in my undergraduate and MasterÂ’s studies while receiving positive evaluations from supervisors during my field placem ents. I knew special education was my true calling when I volunteered in an Elementary classroom where students with exceptionalities were included for part of the day. I enrolled in the special education elective courses during the last semester of my und ergraduate work and chose the special education track for my MasterÂ’s degree. During my s tudent teaching I worked with
58 students with a wide range of disabilities includin g students on the Autism Spectrum. I loved coming to school each day and challenging mys elf to develop new and creative ways to present the material so my students would u nderstand and retain the information. After graduating with my MasterÂ’s degree, I began w orking at an elementary school as a special education teacher. I loved my job but soon realized that I was often perceived as the Â“time-out roomÂ” by teachers who were frustrated by their studentsÂ’ behavior. Many teachers saw the students in special education as Â“ HeatherÂ’s kidsÂ” despite the fact that Â“myÂ” students were included for more than 70% of th eir day in the general education classroom. I soon became frustrated with my charact erization as the Â“disciplinarianÂ” and approached my Principal to discuss the possibil ity of conducting a training with the general education teachers. My goals were to addres s effective strategies to use in the classroom as well as my role as the school special education teacher. I was quickly rebuffed with the explanation that there was no tim e for such a training and that she would be sure to clarify my role at the next facult y meeting. This clarification never manifested and I came to the realization that many of the general education teachers were not adequately prepared to work with students with special needs. It was this realization that inspired me to pursue a Ph.D. in the area of Special Education. I thought that if I could effectively pr epare teacher candidates to collaborate with general educators and other multidisciplinary team members that I would, in turn, be improving outcomes for more students. The decisi on to leave the classroom was a difficult one for me but knowing that I would still be making a difference in their lives eased my anxiety and quelled my hesitation.
59 I enrolled in the Doctoral Program in the summer of 2005. At this point, I had been dating my college boyfriend, Cameron for five years. His sister, Tanya is diagnosed with AspergerÂ’s and I frequently used my new found classification as a doctoral student and special education teacher to legitimize my Â“kno wledgeÂ” about individuals on the autism spectrum. I reprimanded Cameron for the way he spoke to his sister. I constantly reminded him that she was not Â“severeÂ” as she was d iagnosed with AspergerÂ’s. This led to many altercations and frustration on both ends. I was frustrated that he was not listening to me and did not understand the autism s pectrum. He was frustrated because I did not understand his experience as a brother of a n individual with an Autism Spectrum Disorder (ASD). The constant misunderstandings insp ired me to seek out the experiences of his parents. I was certain that they would corro borate my perspective and Cameron would be proven wrong. My prediction was further fr om the truth than I ever could have imagined.
60 Chapter Four Donna and MartyÂ’s Story Donna and Marty Kurtis are Caucasian parents in the ir late-fifties, have been married for almost forty years and have four childr en who range in age from thirty-two to twenty-seven. Cameron, my former partner is the you ngest at twenty-seven, followed closely by his sister, Julie, who is twenty-nine. T anya is thirty and Brad is the oldest at thirty-two. Donna and Marty both come from Irish Ca tholic backgrounds and have lived in the same house since before Brad was born. It ha s undergone several extensive remodels making it look much newer than its thirtysix plus years. Donna runs a manufactured home resale company which is lucrative considering the central Florida town in which they live. Marty recently retired fro m an executive position at a manufactured home company but still participates as part owner of a senior living and golf course/country club community. Their combined household income is well over $100,000.00 per year and now that their children ar e grown and out of the home, they spend the majority of their time traveling and vaca tioning. Their community is a tight knit one and many of their relatives live within 20 minutes of one another. Everyone comes together on holidays and the average attendan ce at family functions ranges anywhere from 40-70 people. For the seven years I w as a part of this family, I attended these family functions and grew very close to many of the extended family as well. Everyone knew who I was and I always felt as though I was one of the KurtisÂ’, Donna
61 and Marty reinforced this feeling by including me a nd telling me that I Â“was part of the family.Â” No one ever expected mine and CameronÂ’s re lationship to dissolve and many were shocked and, according to Donna, Â“devastatedÂ” when it did. I still maintain a relationship with the family, particularly Donna, T anya, and BradÂ’s wife, Anna. Donna recently finished treatment for breast cancer and I feel as though our relationship grew stronger during that time despite the fact that Cam eron and I were no longer a couple. The following story begins about six years into the relationship between Cameron and myself and ends in January of this year. Â“I seriously canÂ’t believe you! By saying that, you totally negated everything my family has gone through with her. I know you are wa y smarter than I am when it comes to this, but you didnÂ’t live with it so donÂ’t say t hings like that when you donÂ’t have a clue!Â” Oh God! How am I going to calm him down? I didnÂ’t mean to upset him this badly. Â“Cameron, please calm down. I wasnÂ’t intentionally trying to negate your experience. I was just trying to point out that in the grand scheme of things, Tanya is not severe, and for you to say that she is, gives peopl e who donÂ’t know her a completely different perception of who she really is. When you say someone has severe autism, people automatically see a person who flaps their a rms or rocks in a corner and has little or no verbal language. I just didnÂ’t want Phil (my friendÂ’s husband) to think Tanya was something she isnÂ’t.Â” Â“IÂ’m just sick and tired of having to defend my fam ily to you. We have been through so much more with Tanya than you will ever know. To us, she is severe, period.Â”
62 Â“But Cameron, IÂ’m just trying to make you understan dÂ…Â” Â“I understand just fine, I know what weÂ’ve been thr ough and I see it as pretty severe, regardless of what you think. End of discus sion.Â” Should I press him further? How can I make him und erstand that Tanya does not have severe autism. She has AspergerÂ’s syndrome, wh ich is not considered a severe diagnosis in the grand scheme of Autism Spectrum Di sorder (ASD). Â“OK, conversation over, I jut donÂ’t want you to be upset with me. I hope you know that my intention was not to contradict what y ou were saying; I was just trying to clarify it a bit so Phil had a better understanding of who Tanya was. From now on, IÂ’ll stay out of it.Â” Â“Good, are you ready to go?Â” My stomach churns as I think back to how angry Cam eron, my boyfriend of six years, was with me at that particular moment. Never in our relationship had I seen so much defensiveness in his eyes. He was defending hi s family, defending what they had gone through with Tanya. I tried to use my experien ces working with students with autism and my knowledge of the disability to help C ameron understand where Tanya fell on the continuum of Autism Spectrum Disorder (ASD). However, that is not what he wanted to hear. I wonder if our problems in communi cation about this issue will have a negative impact on our relationship in the future. The argument I had with Cameron spurred me to reque st an interview with his parents. I wanted to hear their side of the story a nd try to understand why Cameron was so defensive when it came to Tanya. I knew I could not continue to walk on eggshells whenever TanyaÂ’s disability came up in conversation My hope was that CameronÂ’s
63 parents would provide me with inside knowledge, and a different perspective, about what it was like to raise a child with autism. Although I was apprehensive about approaching them with such a sensitive topic, it was easier tha n I anticipated. They were more than willing to sit down with me and tell me whatever I wanted to know. I expected a very structured interview where I asked the questions, a nd his parents answered them. This was not at all the case. I listened while they told me stories of raising a child with a disability. The talking and telling of stories chan ged my perceptions and allowed me to become an insider to the experiences of a family I thought I knew. The following account portrays one family and their lived experiences of raising a child with autism. I take a deep breath in an effort to ease my anxie ty as I pull into the driveway of a house I have visited on countless occasions during my six year relationship with Cameron. I have never spoken this formally with the family about TanyaÂ’s disability and I am anxious to hear what they will share with me. This family was met early on with the challenge of raising a child with AspergerÂ’s syndrome, combined with a physical disability, Atte ntion Deficit Hyperactivity Disorder (ADHD), and characteristics of Obsessive Compulsive Disorder (OCD). Despite the fact that these disabilities were staggered in their dia gnoses, their manifestation was present from birth. Tanya was born in 1977 with a physical disability, which presented itself during delivery. She was born in the front breached positi on with her feet over her shoulders, pushing forward on her ears. Due to the birthing po sition, Tanya was diagnosed with a physical disability. She began wearing polio braces to stretch her Achilles tendon, when
64 she was 3 months old. At 16 months old, she could b arely sit up or walk, but, according to CameronÂ’s mother, Â“Tanya could talk for days!Â” I had to smile when TanyaÂ’s mother, Donna, was tell ing me about her uncanny ability to talk. Tanya still has this ability and i t amuses me that it was developed so early in life. I specifically remember the unique experie nce I had sharing a hotel room with Tanya during JenniferÂ’s, her younger sister, weddin g. She sat outside the bathroom and talked to me through the door while I was showering and putting on my makeup. She must have talked non-stop for a good forty-five min utes. She was telling me how excited she was about being the Maid of Honor in the weddin g. It was a moment of pride for her and I was happy that this responsibility made her f eel important. My thoughts are interrupted by DonnaÂ’s voice, who h as continued her story of TanyaÂ’s early years. Â“TanyaÂ’s preschool years focus ed on the physical aspect of her disability. She was a toe-walker and would often ru n around the house on her tip toes.Â” Â“I canÂ’t even tell you how many times she fell flat on her face,Â” CameronÂ’s father, Marty, offers, laughing. It is pretty funny, I think to myself. I can just see Ta nya now, running across the slick wooden floor in the living room, red curls fl ying, and then boom! Flat on her face. What a sight! Â“Her Achilles was really short, which is why she wa s a toe-walker, actually, she still is a toe-walker, but itÂ’s much better than it used to be,Â” Donna says smiling. I can detect the slightest moisture in the corner o f her left eye. I hope they are still feeling OK about sharing this experience with me.
65 Â“When did you start to notice that there was more t han just a physical disability going on?Â” I inquire. Donna continues her story, with Marty watching her closely and sporadically nodding his head in agreement. Â“Well, when Tanya we nt to elementary school, we began to notice her having trouble with math, and more se vere problems with her social behavior. She could read anything, but she couldnÂ’t do the math. She just couldnÂ’t grasp the concepts; even the concrete concepts were diffi cult for her. We worked with her at home, hired tutors, but the math just didnÂ’t seem t o stick. I think it was around third or fourth grade that she started being pulled out of t he classroom to go to a special class for math. I think they called it SLD.Â” Â“So, was Tanya diagnosed as having a Specific Lear ning Disability?Â” I ask, trying to put the pieces together in my head. Â“No, she wasnÂ’t diagnosed as SLD, but she still att ended the special math class for the extra help.Â” I remember that in special education, when a studen t is diagnosed with one disability and is receiving services for that disab ility, they are also eligible to receive additional special education services, such as acad emic remediation. I attempt to clarify for myself by relating TanyaÂ’s school experience to my own experience as a teacher. Â“Oh, I see, I had a student who was diagnosed as ha ving a Speech/Language disorder, but I still served him ac ademically because of his initial special education eligibility.Â”
66 Donna nods her head in understanding. Â“I remember the special ed. teacher explaining it to us something like that. Since she was already receiving special education services, she could be placed in the SLD math class .Â” Â“We went through so many diagnoses because as she g ot older. She had so many different symptoms associated with so many differen t disabilities. She had a lot of the symptoms of Obsessive Compulsive Disorder.Â” Marty interrupts, Â“She still does, but they are n ot as severe as they used to be, thank God.Â” Donna agrees with her husband and continues her sto ry without the slightest bit of hesitation. Â“I couldnÂ’t go anywhere unless I told h er where I was going. Even then she would run to the door, look out, and make sure I wa s getting into the car like I said I was. When she was younger, she wouldnÂ’t let me out of he r sight. If for some reason she couldnÂ’t find me, she would have a complete meltdow n.Â” Â“Tanya was also diagnosed with ADHD. She was put on Ritalin, then Adderall, and now she is taking Dexedrine. I was against the medication at first, but once I saw that it gave her some kind of relief, I accepted it. As she got older, the behavior problems became more severe and we were so frustrated becaus e she never fit into any disability category. She was acting out so much, especially in middle school, and more so in high school. She was always in trouble for getting into fights with other kids. The other kids teased her and she would go after them. She also st arted stealing. Our town is small so everyone was aware of what was going on. LetÂ’s just say we owed people a lot of favors when it came to Tanya.Â” Donna lets out a nervous c huckle and continues.
67 Â“The parents of the kids she was fighting with or s tealing from would call the house. I would have to calm them down, apologize, a nd convince them not to call the police or go to the school principal to get Tanya s uspended.Â” I cannot believe what I am hearing. It was evident to me that Tanya had a disability, illustrated by her difficulty with soci al situations. I have observed this aspect of her disability first hand, but never knew about these behavior problems. Not being privy to this information makes me feel as though I have been an outsider for the past six years. I am finally beginning to understand why Cam eron always becomes so defensive when it comes to Tanya. I have been spreading my so -called Â“knowledgeÂ” and didnÂ’t have the slightest clue about what went on. Â“I finally got to a breaking point where something else had to happen. I was at my wits end. I had four children and I felt as if I wa s neglecting three of them. It wasnÂ’t fair to them. Our doctor in Tampa recommended that we ta ke Tanya to a specialist in Boston who studied children who had both ADHD and Asperger Â’s. This was the first time we had ever heard of AspergerÂ’s and we were excited ab out the possibility of finally finding a place where Tanya fit, so we made the decision to take her to the specialist in Boston.Â” I am amazed at the detail with which Donna tells th e story, she remembers the doctorsÂ’ names, the dates, and descriptions. ItÂ’s a lmost as if she is in a trance as she is telling the story; so focused. I have so many quest ions, but I do not want to interrupt her. Â“We flew up to Boston and met with the specialist during TanyaÂ’s sophomore year in high school. He sat with her while we watch ed through the double-sided mirror. He did a bunch of tests on her, and showed us this checklist of AspergerÂ’s symptoms at
68 the end of the testing. Tanya had all of them! We just felt tremendously relieved to have finally found a place where Tanya fit. Â“But we were scared. They didnÂ’t give us a lot of hope for where these kids would be in ten to twelve years,Â” Marty adds. Â“But,Â” Donna continues, Â“We were so excited to sh are the information with TanyaÂ’s teachers. We thought now that we had an acc urate diagnosis Tanya would get the services she needed. Unfortunately, no one real ly knew anything about AspergerÂ’s because it was a relatively new concept for our sma ll town. Tanya fell back into the same old routine of acting out. She was so unhappy becau se she didnÂ’t have any friends and her siblings did. She would make friends for a litt le while, but they would only be her friends until the money ran out, then they were gon e. We talked to TanyaÂ’s psychiatrist about her lack of friends, and she explained to us that Tanya was an outsider. So she tended to attract other outsiders. It was at that t ime that she recommended sending Tanya to a special school, away from here.Â” From the strained look on DonnaÂ’s face and the way her brow is furrowing, I can tell that this was a difficult decision for her and Marty to make. Â“How did you react to that suggestion?Â” I ask. Â“At first I was totally against it. I was afraid of what people would think if I just up and sent her away. I look back and realize that I should not have cared about what anyone else thought. I finally came to the realizat ion that I needed to do this, it was best for everyone--for us, for our other children, and f or Tanya.Â” Â“That must have been a hard decision for you two to make. How did Tanya respond to the decision?Â”
69 Â“It was a very tough decision. We both lost a lot o f sleep over it,Â” Donna says, looking over at Marty, who finally sees an opportun ity to add his two cents. Â“We went to visit three different schools--one in B oston, one in Pennsylvania, and one in Vermont. We decided on the one in Vermont be cause of the different things they offered. There were two staff members for every stu dent. The academic programs were very structured, which is exactly what Tanya needed and the living arrangements were really nice. The price was a little expensive, but we want ed what was best for Tanya, and fortunately, we had the means to do it.Â” But what about the families who do not have the mea ns to do it? What do they do? Are they not also entitled to Â“the best?Â” It is unf ortunate that SES impacts the quality of services that are available to children with ASD. Â“Tanya didnÂ’t see it as fortunate,Â” Donna continues Â“She had a complete meltdown. She didnÂ’t want to go at first, but after we took her up there for a visit and an interview, she was more receptive to the idea. We h ad to go through an application process, complete with interviews, which I thought of as a formality. Tanya was so worried about not being accepted into the school. T hat was really interesting to me, because I didnÂ’t think there was any way they wouldnÂ’t take her. Tanya just wanted to be accepted somewhere. She had been an outsider for so long. She just wanted to find a place where people would like her for who she was, not for how much money she had on a particular day or what kind of gifts she gave. I hope my face isnÂ’t giving away the sorrow I am f eeling right now. I wonder if Tanya realized that she was an Â‘outsider.Â’ Were he r feelings hurt by her so-called friends, or did her deficit in social skills mask h er ability to perceive their shallowness?
70 Â“Tanya started attending Ridge Valley in Vermont he r junior year of high school. She wasnÂ’t allowed to talk to us for the first two weeks she was there. It was part of the program, but it was really hard for her, and us. Th e director of the school would check-in to let us know how she was doing, but we werenÂ’t ab le to talk to Tanya until the end of her second week. Even then, the length of the conve rsation was limited to ten minutes.Â” Â“Did TanyaÂ’s behavior improve with her being in a d ifferent, more structured environment?Â” Before Donna has the chance to answer, I anticipate what she is going to say. IÂ’m sure it must have. Look at Tanya now. She rarely acts out anymore, she lives on her own. Sure, her ability to read and respond to s ocial cues is still questionable, but overall, it seems as though she has made a marked i mprovement. Â“No, it got worse.Â” Â“Really?Â” I ask, flabbergasted. Â“Oh God! It was horrible. She would have a best fr iend one day and the next day they would be in these terrible fights. Not the cut esy fights either, physical fights. She was stealing phone cards and running up bills on ou r credit card. Tanya had no concept of what was right and wrong with guys. She disappeared at a hockey game with some guy and they couldnÂ’t find her. At one point, they call ed us and said that she wasnÂ’t going to be able to stay because they couldnÂ’t keep her safe So we hired a support system-graduate students to help look after her while she was at Ridge Valley.Â” Â“When she went to Champlain for college, we had to do the same thing. We hired grad students in special education and psychology, who needed extra money, to essentially baby sit Tanya.Â” Â“So did Tanya graduate from college?Â”
71 Â“No, we had to bring her home, it just got so bad. The inappropriate behavior..Â” Â“She maybe passed like ten hours, thatÂ’s it,Â” Marty interjects. Â“So we made the decision to bring her back here. Bu t we couldnÂ’t live with her, not anymore. It was just so unfair to Cameron. He w as the only one still at home.Â” Â“His buddies would come over here and Tanya would f lirt with them. I mean it was bad!Â” Marty exclaims, his eyebrows raised. Â“She was obsessed with the computer and online. She would get online and run up credit cards that she wasnÂ’t supposed to. Heathe r, we have paid $2500 phone bills, twice. $2500 in one month! $800 another time, some guy from Winter Haven, somehow she charged his credit card for all these phone cal ls she was making to Vermont. It was all we could do to stop him from pressing charges. We have to get behind her and clean up the mess and she just does not know the conseque nces. She doesnÂ’t realize; itÂ’s just not there.Â” Why wouldnÂ’t Cameron tell me any of this? It is un derstandable that he would want to protect his family, but had I known this, i t is possible that a lot of our communication issues could have been avoided. No, d o not place the blame on him, our challenges have been just as much my fault. I shoul d not have made judgments. Â“Tanya actually got hurt in Vermont. She went somep lace, to a bar, some guy beat her up, took her money and left her on the sid e of the road. Then she comes home and beats up Cameron. She threw the phone at him an d hit him in the head with it. I told her that I had had it. I took her and told her that we were going to move her into an apartment. I couldnÂ’t have her hurting Cameron. I t hink it was easier because she had
72 already been away for a few years. It was probably the most peaceful time of our life. I know that sounds horrible, but for our other childr en, it was necessary.Â” I admire Donna and MartyÂ’s vulnerability right now, their willingness to share this experience with me. It hits me that I, like Ta nya, have been an outsider. Not in the same sense, but an outsider nonetheless. I question my previous interactions with Cameron, and regret some of the comments I have mad e about his insensitivity towards his sister. It would have been nice if I had tried harder to see where he was coming from instead of forcing my educational jargon onto him w ithout acknowledging his lived experience. Â“Is the apartment you moved her into the same apart ment she lives in now?Â” Â“Oh no! WeÂ’ve been through apartments too,Â” Donna s ays, shaking her head. Â“She was asked to leave the first complex she moved into because she was harassing a police officer who lived in the apartment below her Tanya would feed the officerÂ’s cat and the lady asked her to stop, but Tanya continued to feed it. Tanya would always go down to the officerÂ’s apartment to talk and try to make friends with the lady, but the lady didnÂ’t want to be friends. Tanya has a hard time re ading social cues, so she kept persisting and the lady ended up reporting her to t he office. She also had loud parties and got into trouble for that as well, so they finally asked her to leave.Â” Â“In between all of this, Tanya held at least 30 jo bs, IÂ’m serious, at least 30, if not more. She worked herself through the entire mall ov er there: Burdines, Belk, Best Buy, Kmart, Home Depot. ItÂ’s always co-workers; she just canÂ’t get along with them. You know when itÂ’s coming. She would start to complain about someone hating her and she would have meltdowns all the time. You know, throw temper tantrums, scream at us for
73 no apparent reason, and accuse us of trying to cont rol her life.Â” Donna sighs in exasperation. Marty continues, Â“It was around that time that she decided to run off with one of those magazine selling groups. It was essentially a cult. They brainwashed her into going on the road with them to sell magazines.Â” Â“She called to tell us she had lost her job. She go t into it with one of her managers at Kmart and started screaming at him. She actually got banned from the store! We begged her not to go, but she left anyway. She call ed and told us to come and pick up Nikki (the family dog) because she was leaving. We went over to get Nikki and she was gone. The place was filthy. We didnÂ’t hear from her for two weeks.Â” I can see the strained look on DonnaÂ’s face as she re-tells this experience. It is difficult imagine the feeling of having a chi ld run off and leave. I speak to my parents every day. The thought of going two weeks w ithout talking to them is absolutely unfathomable to me. As a parent, I think that not h earing from your child, especially one who has a disability, for two weeks would be agoniz ing. Â“She finally called the day before FatherÂ’s Day to say that they were leaving the state. She wanted to go out to dinner with the fami ly for FatherÂ’s Day before they left. I told her that these were things she wasnÂ’t going to be able to do anymore if she was going to be gone all the time. She wouldnÂ’t be able to do all the things with the family that she was used to. I told her Â‘I donÂ’t know how you feel about it, but it really breaks your momÂ’s and my hearts.Â’ That really seemed to bother her and she asked us to come and get her,Â” Marty sighs, as if preparing for the fina l blow.
74 Â“We went to pick her up; she had to sneak out so sh e could come and meet us. At that point we had to appeal to a different side of her. How are you going to get your teeth cleaned? How are you going to get your prescriptio ns filled? All of the things that she thought we controlled because we didnÂ’t want her to have a life, she realized we did because we wanted her to have a life. She really broke down then. I j ust remember how filthy she was when we picked her up. She was at so me nasty motel where she had been sleeping on the floor. We took her to a nearby rest aurant to eat and she started telling us about how they would eat at gas stations. If she di dnÂ’t get any cash from her magazine sales, she had to sleep on the dirty floor of a mot el. It was just terrible. Tanya decided that she wanted to come home. After we were finishe d eating I went up to the motel room to get TanyaÂ’s things. One of the girls threatened me. She said that Tanya wasnÂ’t going anywhere, and I said Â‘oh yes she is. I am her mothe r and she is leaving right now.Â’ I was just so afraid! Then Marty came to the door and go t TanyaÂ’s things, but I was just so scared. We got into the car and tried to leave, but they stood right in front of the car so we couldnÂ’t.Â” Â“And I got out of the car and almost hurt somebody. I took out my phone and threatened to call the police.Â” Marty says, making a fist with his hands. Â“The manager of the group came out and said Â‘oh no, no, Tanya can go.Â’ They had her Nintendo, her games, her wallet, her money, her watch, but they said it was locked in the room. They promised to meet us the ne xt morning and give it to us. Of course, we never heard from them again. Right after that incident, 20/20 had a special on those kids saying that they were all abandoned, or outsiders, that did not have any place to go. ThatÂ’s just one of our roads with Tanya.Â”
75 Â“Sometimes we just have to sit back and say we shou ldnÂ’t feel sorry for ourselves, we should feel sorry for her. Having the diagnosis really helped with that. Just to know that there were other people out there, who were li ke her, was really comforting.Â” Donna lets out a sigh of relief, as if she is reliving th e experience as we are talking, thankful that her daughter is safe. Â“I definitely have less patience with her now thoug h. I just feel like I donÂ’t know how to deal with her sometimes, itÂ’s so frustrating If sheÂ’s angry at us, she will call the house ten and twelve times just to yell at us for t rying to control her.Â” DebraÂ’s short, tight words illustrate the frustrati on she feels because of TanyaÂ’s actions. Cameron used to tell me about TanyaÂ’s obsessive c alling, but I always reprimanded him for his insensitivity. Â“She canÂ’t h elp it,Â” I would say. Â“ItÂ’s not her fault, it is part of the disability. You should try to be a little more understanding.Â” In retrospect, I realize that, as an outsider, it was not my place to reprimand him. He has lived with Tanya day in and day out. All of my inte ractions with her have been brief and meltdown-free; my experiences are insignificant in comparison to Cameron and his familyÂ’s lived experience with Tanya. Who am I to m ake judgments about an experience I know so little about? Â“ItÂ’s even more frustrating because she never forge ts the things she thinks we do wrong. But when it comes to her acting out, she for gets about it immediately. If we are still upset with her two hours after the incident, she doesnÂ’t understand what she did wrong. She thinks itÂ’s over and done with.Â”
76 Â“Looking back on the past 29 years of TanyaÂ’s life, things have definitely been difficult, but at the same time, we really donÂ’t kn ow any other life. Taking Tanya to her therapy sessions, we look around and see the others who are usually much worse than Tanya, and we think well, maybe itÂ’s not that bad.Â” I can tell the interview is coming to an end as Mar ty and Donna begin exchanging stories with each other about recent incidents they have encountered with Tanya. The love in their eyes for each other is apparent. They have shared the experience of raising a child with autism and their marriage appears strong er than ever. Marty and DonnaÂ’s communication is open and honest and I sense a genu ine connection between them. Memoirs written by parents of individuals with auti sm continuously reference the spouse as a participating partner of the marital unit. Spo uses work together to advocate for their child and the services to which they are entitled ( Boushey, 2001; Welteroth, 2001). This collaboration is what has strengthened Marty and Do nnaÂ’s marriage as well as their ability to communicate effectively. I hope that my relationship with Cameron can overcome our current communication obstacles and we can come out on the other side with as much love and admiration for each other as his parents have for one another. Â“Thank you so much for talking with me about this, I learned so much about your experiences. I definitely have a newfound appreciat ion for you all,Â” I say smiling. Â“Well, thank you, but IÂ’m not sure if we handled ev erything the way we should have. We just did the best we could,Â” Donna says. I raise myself up off of the navy leather sofa and walk into the family room where Cameron is laying on the couch watching TV.
77 Â“So, babe, how did the interview go?Â” Cameron ask s with a hint of sarcasm in his voice. Â“It was very enlightening for me,Â” I reply honestly Â“I had no idea how many serious incidents your family has gone through with Tanya. I have a completely different understanding and appreciation for you and your fam ily.Â” I search CameronÂ’s face for some kind of sign to continue. He nods his head in agreement and wraps his arms around my waist. Â“IÂ’m glad that you were able to hear it from my par ents. I donÂ’t think you ever really heard me when I would try to talk to you about Tanya.Â” Â“I know, and IÂ’m sorry. I thought you were just b eing a typical younger brother; that you were reacting to Tanya with more frustrati on than understanding. I never wanted to discredit what you and your family have gone thr ough. All I know is what IÂ’ve learned through my course work and my own personal experien ces in the schools. I realize now that my experiences are completely different from y ou and your familyÂ’s experiences. I had no right to make judgments.Â” Cameron smiles and nods his head and I know all is forgiven. He was initially a bit resistant to my suggestion for an interview wit h his parents, perhaps he was embarrassed or maybe he was trying to protect his s ister, I am not sure which. Either way, he appears relieved that I know and even more pleased that I admitted the error of my ways. I believe that this interview will allow m e to see Cameron and his family in a different light. I mentioned initially that I have often become upset with the family about a tone of voice, action, or comment towards Tanya, it is my hope that my newfound knowledge of the family story impact the way in whi ch I respond to such situations in the
78 future. Part of being a professional is to listen t o parents, however, their stories fall on deaf ears if we are consistently placing value judg ments on what we hear. In listening to Donna and MartyÂ’s story, I am humbl ed. I did not know as much as I thought I did. I saw myself as an insider, privy to the cutting edge research, educational terminology, and rich with experience. It turns out I was just the opposite. I was an outsider when it came to this familyÂ’s lived experi ences, just as Tanya is seen as an outsider by many others because of her disability. In order to fully understand and appreciate the sto ry of CameronÂ’s family, I had to Â“unlearnÂ” (Merzer et al., 2001) what my previous ex periences had taught me. Putting my judgments aside, I learned the importance of the fa mily story and the impact it can have on the professional story. In order to fully unders tand where parents and family members of children with autism are coming from, we must ne gotiate the way in which our professional story influences our interpretation of the family story. As professionals, we are outsiders as we are not privy to the lived expe riences of the family. When families make the decision to share this lived experience wi th us, it is imperative that we listen without making judgment. Taking the time to validat e interpretations and honor otherÂ’s lived experience is essential in future communicati ve interactions. This newfound knowledge will guide my future research with divers e families and their lived experiences in raising a child with autism. The second interview with Donna came after the rel ationship between Cameron and myself had dissolved. However, when it came tim e to make the phone call to Donna, I felt very little apprehension about contacting he r for a subsequent interview. We had exchanged cards back and forth a number of times wi thin the past few months but I had
79 not actually seen her since before I moved to Calif ornia in August 2008. I made the initial contact with Cameron because I wanted to make sure he was OK with me contacting his mother. Â“I know they would love to hear from you,Â” he said through the phone. Â“My mom asks about you all the time. I think they ask a bout you more than they ask about me!Â” he says jokingly. We exchange pleasantries for a few minutes more and make plans to meet up when we are both back in Florida at the end of the month. I feel nostalgic as I pick up the phone to call Donna. Â“Hello?Â” Â“Hi, Donna! ItÂ’s Heather, how are you?Â” Â“Hi, Heather! It is so wonderful to hear from you. Cameron told me that you might be calling. How are things in California? Are you loving it? Â“I am still adjusting, but overall I am doing well How are you doing? Â“Oh, you know, just trying to keep my spirits up a nd think positively. I am in remission though so we are keeping our fingers cros sed.Â” Â“ThatÂ’s wonderful!Â” I say enthusiastically. Â“I hav e thought about you a lot over the past few months and I am so happy to hear that you are doing well.Â” Â“Thanks sweetie, the gifts and cards you sent me r eally helped keep my spirits up.Â” Â“Well, good,Â” I say with a smile Â“that was the int ention.Â” We both laugh and talk for a few more minutes about life in general and my new career in California.
80 Â“The dissertation is coming along but I was wonderi ng if you might be willing to do another interview with me? You guys are the insp iration for my study and I would love to speak with you further about your experienc es if you are up for it.Â” Â“On one condition,Â” Donna says. It is difficult to tell if she is joking or being serious. Â“And what is that?Â” I ask anxiously. Â“WellÂ….Cameron told me that you would be back at th e end of the month and we would love to see you. Do you think you could come and visit us at the house? I will let you interview me to your hearts content,Â” she laugh s. My stomach does a flip and I feel a little emotional. That house has so many memories f or me, all wonderful, all missed. The thought of going back almost brings me to tears. Â“I would love to come and see you at the house,Â” I say without hesitation Â“Great! It will be so wonderful to see you and catc h up. How about the first Saturday you are here? We could do around 11am or s o and then have lunch.Â” Â“That sounds perfect,Â” I say smiling. Donna sounds truly excited to see me. I am looking forward to the visit as well but feel a lit tle uncertain as to what the dynamic will be like once we are all under the same roof again. Will it be conducive to the interview? Will I hold back from them? Will they hold back fro m me? As I turn onto the KurtisÂ’ street I am reminded of all the times we spent together during the seven years Cameron and I were together. Driving to the house today seems different, feels different. I am struggling to hold back tears as the memories come flooding back. I take a few deep breaths and manage to compose myself before I pull into the familiar driveway. I look up and see Cameron co ming out of the house towards me.
81 He opens my car door and gives me a hug. Â“You look great!Â” he says genuinely. Â“As do you,Â” I say, giving his signature khaki shorts, t-s hirt and flip flops a once over. Â“Come on in, my mom is the only one here but she is excited to see you, she has been talking about you all morning.Â” I smile and some of my initial fe ar begins to subside. Just walking into the house brings back familiarity, the smell of the Creamy Nutmeg Wallflowers to which Donna is addicted, the pristine kitchen with what l ook like my favorite peanut butter oatmeal cookies on the counter, and the glass jar o f peanut M&Ms which sit on the family room table. Donna once told me that she fill s it up every time I come over because she knows they are my favorite. Â“Heather!Â” Donna exclaims, pulling me close. Her em brace is long and hard, bringing me close to tears again. She puts her hand s on my shoulders and looks at me, taking me in, her eyes moist as well. Â“You look gor geous, I love the dark hair, California suits you.Â” Â“Thank you. You look amazing as well. It is so good to see you,Â” I say, giving her another hug. Â“It has been way too long.Â” Cameron takes this as h is cue to exit and mumbles something about going to wash the car. I get the fe eling that the interaction between Donna and myself may have made him uncomfortable by reminding him of what Â“was.Â” Â“Help yourself to some M&Ms, I put them out just fo r youÂ….and, I made your favorite cookies,Â” she says with a wink. Â“I already scoped them out,Â” I say laughing while s imultaneously taking a handful of M&Ms. Donna and I walk into the family room and take a seat on the same navy leather sofa where the first interview took place. I ask permission before turning on the
82 tape recorder and Donna just gives me a smile and s ays Â“of course, you know you donÂ’t have to ask.Â” I place the tape recorder on the anti qued coffee table and face her. Â“We talked before about your experiences with Tanya and you gave me some amazing insight into what it is like to raise a child with Autism. You are the true inspiration for my dissertation and I just want you to know that.Â” Donna smiles and tilts her head, Â“well, we see you as an inspiration as well. Look how far you have come these past seven years, we ar e so proud of you.Â” Â“Thank you,Â” I say lowering my eyes. One of the big gest strains on mine and CameronÂ’s relationship was the fact that I went bac k to school. I went from being and elementary school teacher with nights and weekends off to a full-time doctoral student where finding time to do laundry was next to imposs ible. I know that Donna is aware of this fact so hearing her say that she and the famil y are proud of me is really meaningful. Â“That really means a lot to me. This dissertation i s the final hurdle so I am really looking forward to being done.Â” Â“I can imagine!Â” Donna laughs. Â“So, what can I tell you Heather?Â” Â“Well, last time we spoke a lot about the experienc es you have had with Tanya and the overall process you have gone through. Toda y I would like to know a bit more about how those experiences impacted you as a perso n. How did your life change as a result of having a child with a disability?Â” Â“It definitely changed in a lot of ways. I was work ing full-time at Shady Brooke (the familyÂ’s community and golf course) right up u ntil Tanya was born. I had planned to take a couple of months off to transition Brad to t he new baby. Things did not really go as planned. As I mentioned before, Tanya was born w ith a physical disability so we
83 constantly going back and forth to the doctor. Tryi ng to find a babysitter who we felt comfortable with was next to impossible so Marty an d I made the decision that I would stop working, at least for the time being.Â” Â“How did that make you feel?Â” Â“Honestly, I was OK with it at first but then I sta rted to feel,Â” Donna pauses and searches for the right word, Â“trapped.Â” She says al most inaudibly. Â“I know that is wrong on so many levels but that is the honest truth. I f elt trapped in my own home.Â” For some reason this admission does not surprise me Donna has always been someone who is constantly on the go. Whether it was work, shopping, going on trips, organizing a family function, playing Bunko with th e girls, or sewing new cheerleading outfits for the local squad, she was always involve d in something. Imagining her Â“trappedÂ” at home with two small children is very d ifficult for me as it does not represent the Donna with whom I am familiar. Â“Just going to the grocery store was a challenge. I felt as though all of a sudden I had all of this responsibility and no time for myse lf. I got pregnant with Julie when Tanya was one and a half so that added to the burden as w ell. Cameron came not long after and before I knew it, I had four children all under the age of six. It was an absolute madhouse here, I felt incompetent more often than not and I broke down and cried on a regular basis. I never did anything with just myself and th e children because I felt as though I could not handle them all. Tanya was such a handful Had it not been for her disability, I think things would have been a lot easier. The othe r three children were very well behaved and looked after one another. Tanya was dif ferent, she absolutely consumed me.Â”
84 Raising four children with typical development woul d be a challenge! Adding a child with a disability into the mix must have real ly been difficult for Donna, especially since they were all born in such a short period of time. I think it is sad that Donna looks back and sees parenthood as a burden and wonder wha t could have been done differently in order to alleviate that for her. When I think ab out becoming a parent, the term burden is something that is furthest from my mind and I be gin to wonder if it was Tanya herself which Donna considered the burden or the actual tas k of parenting four small children. Was Tanya able to sense that she was a burden? How might this have impacted her? Â“I felt as though I was spending all of my time wi th her and no time with my other children. I became almost resentful. This is probab ly not painting the best picture of me right now, is it?Â” she looks at me questioningly. Â“This is your story Donna, there is no right or wrong, good or ba d. You are being honest about what you felt, that does not make you a bad person, it makes you human.Â” Â“Thank you for saying that, sometimes I feel as th ough I did not do right by Tanya, but I also feel as if I did the best I could considering the circumstances,Â” I nod my head in agreement as Donna continues her story. Â“We did not have a whole lot of family support because everyone around here was having kid s around that time so they were all busy with their own. Our parents were living in Mic higan at the time so they were not around. The only people we had to count on were eac h other. Marty was wonderful. He offered to quit working and stay home with the chil dren because he saw how miserable I was. You donÂ’t even know how badly I wanted to take him up on that offer,Â” she says with her fists clenched. Â“I was just so tired and d rained. In the end I decided it did not
85 make sense for Marty to give up his income because he made so much more than I did. The fact that he offered is what stands out in my m ind though.Â” It is easy for me to visualize this unselfishness o n MartyÂ’s part as I have witnessed it first hand many times. He is the quiet strength of the family, always ensuring that everyone is taken care of and happy. He takes his r ole as a husband and father very seriously and his love is unconditional. Â“Once Tanya started school at four years old, I go t a little bit of reprieve. Julie and Cameron were still at home and I was finally able t o give them the attention they deserved while Tanya and Brad were at school. It wa s not the ideal situation but at least they got something, I felt as though I had been neg lecting them since they were born.Â” All through college, Cameron and Julie received car e packages, cards with cash, and other extravagant gifts. After we graduated, Do nna would frequently Â“treatÂ” Cameron and I and Julie and her boyfriend to vacati ons, dinners, and concerts. I wonder if this is her way of trying to make up for the gui lt she feels about neglecting them during the early years of their life. Â“So, I would say that, overall, Tanya has impacted my life in a very significant way. Not all of it has been bad but it has definite ly been a challenging road for the whole family. We thought twice about going on vacations b ecause we didnÂ’t want to have to deal with any of TanyaÂ’s meltdowns away from home. Going out to dinner was difficult and a lot of times we left Tanya with a babysitter while we took the other three children. They needed time with us too, and at home, Tanya to ok the majority of our attention.Â” I am not really sure how I feel about this confessi on. I understand the need to give all children attention but how must Tanya have felt being left at home with the
86 babysitter? Perhaps this is what Donna and Marty ne eded to do in order to feel as though they were doing right by all of their childr en. I do not know what it was like for them, perhaps this form of avoidance was a form of coping for the family. Â“I didnÂ’t really go back to work until we sent Tan ya to Ridge Valley either so that was difficult for me. The decision to send her away was difficult but we felt it was the best for her, our other kids, and us! Marty and I w ent over it and over it and over it again until we were finally OK with our decision. Tanya c ompletely lost it when we told her but after we visited the place she was more open to it. This was not until high school though. I donÂ’t even know how we did it for so long we were at our wits end with her. We were feeling guilty about not paying enough atte ntion to Cameron and Jessica, Brad was already in college. The years she was gone were so peaceful. I know that sounds horrible but it is the honest to God truth. The str ess level in the house went way down and we felt as though we had our lives back. I started working part-time again and my mood really improved. Looking back I think I may have be en a little depressed during those years because I always felt that despite everything I did, I was a failure.Â” My heart swells, I have never seen Donna this vulne rable before. Openly admitting that she felt as though she was a failure as a parent is not something I ever would have imagined her saying. I know that Donna h as always been hard on herself, especially when it comes to family functions. The h ouse has to be pristine, remodel after remodel has taken place in order to make it perfect ly presentable. Food must be beautifully presented, there is always way too much of everything. She literally breaks her back to please everyone. It must have been very traumatizing for her to constantly feel as though she was failing as a mother.
87 Â“I think that you are a great mother, and I cannot imagine you ever being a failure,Â” I say in an effort to comfort her. Â“It mu st have been tough for you but I am sure that you did the absolute best you could, your best is all you can do.Â” Â“I finally realized that somewhere down the line,Â” Donna says smiling. It has definitely not been an easy road. Sometimes I still feel as though I am micromanaging TanyaÂ’s life. But, I know if I donÂ’t, she will not take the responsibility. I make her dentist, doctor, and hair appointments. I manage he r finances, pay all of her bills, fill her prescriptions, and keep track of her oil changes an d things like that. She just canÂ’t be trusted to take care of those things. She gets so m ad at me when I remind her to do certain things, like take her medicine, but when I donÂ’t re mind her, she forgets. ItÂ’s like a no-win situation. I worry about what will happen when Mart y and I are not around. What will she do? I donÂ’t want the other kids to be left with the burden and I have tried to teach Tanya how to take care of these things, but she just does nÂ’t get it. That is a big worry of ours, what will happen after we are gone. Tanya has a God mother and Godfather but they are older as well so that is not a permanent solution.Â” Donna appears stressed and her voice becomes strai ned. I understand her concerns as I have seen how Tanya lives. Even thoug h she lives on her own, her place is frequently in disarray and she is unable to find im portant things. She has challenges with money management and relies on her parents to take care of various facets of her life. Â“We will figure it out at some point, it just weig hs on us. We want everyone to be taken care of. So, anyway, I am not sure what else I can tell you. You mentioned the impact on my life and it has been huge. There has b een stress, there has been resentment, there has been lack of sleep! You never know what y ou are going to get with Tanya. I
88 love her to death but it really has been difficult. I did not think that I would be 56 years old and still managing my 31 year old daughterÂ’s li fe. It is a big responsibility but I have adapted to it. I used to feel guilty about going ou t of town and on vacation with Marty because I was worried about Tanya. You know we have a lot of family in the area and they have really stepped up; telling us that they w ould keep an eye on her while we are gone, call to check in with her, that kind of thing The other kids all live out of the state so we canÂ’t rely on them to look after her. So havi ng the family step up to the plate has also given us a break. Definitely not the life I en visioned but I would never change anything. Tanya is a great kid, she has her little idiosyncrasies, but we love her anyway,Â” Donna smiles and sighs simultaneously. We talk for a few more minutes about Tanya and then move into the kitchen where Donna has prepared finger sandwiches, veggies and dip, and of course, my favorite peanut butter and o atmeal cookies. Cameron magically reappears from washing the car, as if on cue, and w e all sit at the bar and munch on the snacks. We talk for another hour or so, CameronÂ’s n ew sales job in Kansas City, my life in California and the exciting news that both BradÂ’ s wife and Julie are expecting. Not wanting to overstay my welcome, I start to get up. Donna looks up. Â“You are leaving already?Â” Â“I donÂ’t want to monopolize your entire afternoon, just part of it,Â” I say with a smile. Â“Well, it was great to see you, we really miss you Heather.Â” I sneak a peek at Cameron through the corner of my eye and he is look ing at the ground. Â“I miss you guys too, letÂ’s not be strangers.Â”
89 Â“You could never be a stranger to us, please keep us updated on how you are doing.Â” Â“Consider it done,Â” I say moving towards Donna for a goodbye hug. We embrace and I can feel the emotion building in my throat. S he walks me to the door and hugs me again. Cameron follows me to the car and opens my d oor for me. We exchange goodbyes and he leans in to give me a hug. I feel the emotio n rise again and it takes every ounce of self-control I have not to cry. We hold onto each o ther for awhile, almost as if we are afraid to let go. I pull away first, afraid that I will not be able to hold back the tears if I hold onto him any longer. Â“Drive safe, text me when you get home,Â” he says g ruffly. Â“Will do,Â” I manage. He closes the car door and I immediately reach for my sunglasses before he can see the tears that are abo ut spill out of my eyes. As I pull out of the driveway and begin my journey home, I know in m y heart that our relationship is truly over. I have since spoken with Donna several times but t he conversations with Cameron have been few and far between. We are both trying t o move on with our lives and the best way to do that is to minimize our contact. At this point there is still too much emotion involved for us to maintain a friendship but I like to think that someday this will be possible. As I am in California, I emailed Donna the complet ed story, minus the italicized portions, to obtain her thoughts and approval. She indicated that she Â“loved the storyÂ” and Â“hopes that it will help other parents who have bee n dealing with some of the same
90 issues.Â” She also reiterated that reading the story gave her a newfound appreciation for what she has been through and the knowledge she has gained throughout the Â“process.Â” Â“You know, talking about everything I have been thr ough with Tanya helped me to realize that maybe I did not do such a bad job a fter all. I mean, look at how far she has come. I think sometimes I forget about all the progress we have made since day one, thank you for helping me to remember .Â”
91 Chapter Five SandraÂ’s Story Sandra was referred to me by a colleague at Sonoma State University that I enlisted for assistance with my recruitment efforts Sandra indicated her interest in participating to my colleague and I was then forwar ded her contact information. After exchanging a few brief emails, Sandra and I connect ed by phone. She told me a little about her son, Justin, who is 15 years old and was diagnosed with Pervasive Developmental Disorder at the age of four. We talke d briefly about the study, I explained the anticipated time commitment, she confirmed her willingness to participate and we set up a mutually agreeable time for our first meeting. The phone calls and emails were very businesslike and I felt a little apprehensive about the first meeting with Sandra. On the phone she told me that she was fine with the interv iews because she was so used to talking to the psychologists and doctors about Just in. This raised a red flag for me because I do not want my caregivers to see me in th e same light as they see a psychologist or a doctor. My purpose is not to prov ide them with clinical information or answers but rather explore their experience and the associated emotion of the experience. I struggled with how I could communicate this witho ut appearing overbearing or presumptuous. Because of her previous interactions with the doctors, I was afraid that she might not be willing to share the emotionality of h er experience that I was hoping to achieve through this study.
92 Sandra self-identifies as African-American and live s in a small town in Northern California where the population is 3,764; with 92% identifying as Caucasian and only 0.5% identifying African-American. The town can be classified as predominantly middle class as 70% of the families report a household inc ome between $30,000 and $149,999. SandraÂ’s family falls within the upper range with a household combined household income of over $100,000 as self-reported through th e demographics information sheet given to participants at the outset of the study. S he completed some college and works full-time as a manager of a national chain retail s tore. She lives in a 4 bedroom house with her oldest son, Darren, her younger son Justin and her husband Paul. Sandra is the oldest of 4 children. Her brother in-law and one of her sisters live on the property in an adjacent house. As I pull into the long driveway at 11:00am on a Mo nday morning, I notice a beautifully landscaped garden and walkway that lead s to the main entrance of the house. Sandra emerges through the open garage door before I manage to get out of the car. She greets me with a hesitant smile and an extended han d. Â“Hi Sandra, itÂ’s great to finally put a face with a name,Â” I say enthusiastically. Â“Nice to meet you as well, why donÂ’t we go inside?Â” As I step into the house I notice that it is a lot larger than it looks from the outside. It is tidy and I notice that the Christmas tree is still standing and decorated in the room off of the kitchen, despite the fact that it is now the end of January. Sandra leads me to the kitchen table and motions for me to sit. She takes the seat opposite of me. Â“So, here I am, what can I tell you?Â” she asks.
93 Â“Well, as I mentioned on the phone, I was hoping th at this meeting could serve as a rapport building session, you know, give us an op portunity to get to know one another and become comfortable with each other. Sometimes r eliving the experience can be an emotional thing because all of the memories are bro ught back to the surfaceÂ…Â” Sandra nods her head in agreement. Â“It is kind of a n emotional thing, actually, if you look back on some of it. I can remember a coupl e of moments where I was pretty emotional, but itÂ’s not all bad. If you donÂ’t mind me asking, what is your motivation for this?Â” Â“I donÂ’t mind at all! I taught Special Education at the Elementary level for a number of years and I always sort of gravitated tow ards children with autism. I found them incredibly interesting, that is probably what started my interest in autism as a disability. As for my interest in families, I have a family member that is diagnosed with AspergerÂ’s Syndrome. I always thought I knew everyt hing there was to know until I actually sat down with her parents and listened to what they had to say. I felt as though I had all of this knowledge because of my experience in the classroom. I came to find out that I knew virtually nothing about what it was lik e for families of children with autism.Â” Â“Parent experiences can be totally different,Â” Sand ra says slowly. Â“Yes, I found that sitting down with my family memb ers and asking them about their experiences really opened my eyes to the diff erences in perception between families and professionals in the field and allowed me to un derstand what we can do to help families more. I think a lot of times families feel as thoughÂ…Â” Â“No one understands,Â” Sandra interjects.
94 Â“Yes, exactly. So, that is why I am doing this, bec ause I learned so much from my family members.Â” Sandra smiles, Â“thatÂ’s cool,Â” she says. Â“I was real ly excited when Elaine asked me if I wanted to participate, I think it is important for people to understand what it is like for us and if I can help someone in the process, well t hen that makes it even better.Â” I feel relieved as Sandra begins to open up. I beli eve telling my story made her feel more comfortable showing a little vulnerabilit y, which I can tell is not an easy thing for her to do. Â“Well, I am really excited that you are willing to participate as well. I am looking forward to learning more about Justin and what it h as been like for you as his primary caregiver. I do have a tape recorder that I will le ave for you so that you can talk openly about your thoughts and feelings without the pressu re of having an interviewer present. I would like to pick it up before our next meeting so that I can get more of a feel for your story. Is that OK with you?Â” Â“That sounds great. I am not sure if I will use it, I really do not feel any pressure to talk about Justin, it is kind of nice to have so meone who wants to listen. Maybe I will try and get my husband or sister to talk about thei r experiences.Â” Â“However you would like to use the tape recorder is fine with me, you have free reign. When would you like me to pick it up? Â“How about a week from today? I have off on Mondays and 11:00am is a good time for me, is that OK with you?Â” Â“That works for me as well. I will give you a call the day before to confirm. You have my contact information, right?Â”
95 Â“Yes, right here!Â” she waves a yellow legal pad Â“Great! Please call me if anything comes up, questi ons, concerns, whatever. It was really wonderful meeting you Sandra and I am ve ry much looking forward to hearing more about your experiences.Â” Â“Thanks, Heather. I will give you a call if anythin g changes, if not, I will see you next week.Â” I stand to leave and Sandra walks me to the door. S he tells me more about her garden and how much she used to love working on it on the weekends. Â“No time anymore,Â” she says, shaking her head. Â“I finally ha d to break down and hire someone to take care of it, such a shame.Â” I nod my head in ag reement and comment again about how beautiful it looks. She smiles and continues walkin g towards my car. We shake hands again and exchange goodbyes. I get into the car fee ling a bit better about the upcoming interviews. Sandra began to open up about her exper iences and I saw the pain in her eyes when she mentioned that raising a child with autism is an emotional process. However, I also feel as if she is somewhat guarded, which is c ompletely understandable considering that this is our first meeting. However, I am unsur e as how to begin breaking down the walls that seem to surround her. When I arrive at SandraÂ’s house the following Monda y, she meets me outside and greets me with a familiar smile. Â“Hi, Heather. ItÂ’s great to see you again! I have to tell you that after we spoke last time, I started thinki ng about what it had really been like for me these past 11 years.Â” Â“ThatÂ’s great!Â” I say with a smile. Â“Did you use th e tape recorder to record your thoughts?Â”
96 Sandra looks a little bit embarrassed. Â“No, I didnÂ’ t. I would rather talk to someone than something. It is really nice just to have some one to listen to you.Â” I feel my heart do a little dance in my chest. I am truly flattered that Sandra would rather speak with me than to the tape recorder. I a m also fraught with the realization that this could be a common feeling among parents to chi ldren with a disability. Do families just want someone to listen to them? Hear them? Ack nowledge their experience? Â“Well, that is what I am here for!Â” Â“I know this was just going to be a short meeting s o that you could pick up the tape recorder but do you have time to do the second interview today?Â” Sandra asks nervously. I actually had not been planning on a two hour inte rview today but it would break my heart to say no to her. She appears anxious, hop eful, almost desperate, to talk to me. She fidgets while awaiting my response and looks do wn at her shoes. Â“Of course! I have all the time in the world,Â” I sa y with a smile. Â“Really?Â” Sandra asks skeptically. Â“Absolutely! I set Mondays aside as my research day s so I have nothing scheduled for today.Â” Her face lights up, Â“great, well come on in then an d we can get started.Â” I follow her into the house and take the same seat at the ta ble from last week. Sandra surprises me when she decides to sit next to me, as she sat acro ss from me last Monday. I turn my chair to face her and she looks expectantly at me f or direction. Â“Why donÂ’t you start by telling me what you thought about after our first m eeting.Â”
97 Â“I started thinking about how it all started. Just before Justin started elementary school, he was going to preschool. And the preschoo l teacher kept saying, Â“I donÂ’t think he can hearÂ”. And IÂ’d say, Â“yes he can hear. He can hear just fineÂ”. And she kept saying Â“no, I donÂ’t think he can hear.Â” So finally I said, Â“okay.Â” I had already taken him for all his checkups and stuff. And I knew he could hear, b ut I went to the doctor anyway. I can hear the frustration building in SandraÂ’s voi ce as she speaks, it seems as if she is reliving the moment in her mind, remembering how she felt, her hand slaps the table with emphasis as she says Â“he can hear!Â” She sighs and continues. Â“So we took him to the doc tor, and thatÂ’s when everything started. The doctor said, Â“whoops!Â” I th ink he was a little bit embarrassed that he did not catch it right away, because we went to all the checkups and he always told us that everything seemed normal. He ended up referrin g us to a psychologist because he was not able to make the diagnosis himself. Everyth ing started to change after that day. We ended up getting the diagnosis about 7 or so mon ths after we were initially referred. It was such a pain, going here, waiting, going ther e and waiting more. I was not really sure what the diagnosis was supposed to do. I knew it meant he would get some extra support in school but I didnÂ’t know what it meant f or us as a family.Â” I wonder why diagnosing agencies do not initially p rovide parents with access to or contact information for resources to which they are entitled. It seems as if these Â“servicesÂ” are only available to those who actively seek them out or have prior knowledge that they are available; I am reminded of a Â“secret societyÂ” where only a select group of individuals are granted entre. How is this fair?
98 Â“We told my family and my mother pushed me to go fo r support. I probably would have never, ever done it. Both of us are work ing parents. We live fairly comfortably. So going for support was not something I wanted to do.Â” I feel a little bit caught off guard by SandraÂ’s he sitation about pursuing services. Perhaps it is my professional experience which has ingrained in me the importance of early intervention that makes me feel this way. How ever, I know that family coping styles are different, perhaps this was SandraÂ’s way of ini tially coping with the diagnosis. Â“I have a sister who is kind of slow, she will be 5 0 this year, and my mother said that she wished she had of gone and gotten services for her. But when we were growing up, that wasnÂ’t something you did. The family was p oor. We did whatever we did to survive. My dad worked, my mom worked.Â” I begin thinking about the role of culture and pove rty plays in the rate at which caregivers to children with disabilities seek out s ervices. Is it a lack of awareness about the availability of services? Or is it a cultural o r socioeconomic construct which prevents certain families from taking advantage of the servi ces to which they are entitled? Â“My mom never had any support for my sister so she was really insistent. She kept telling me that I needed to go and see what ki nds of services were available. She actually sent my sister with me to make sure that I did, can you believe that?Â” Sandra laughs. So I probably would have never, ever done i t had it not been for my mom making me go. I donÂ’t even know how we ended up getting a referral to the services. But somehow somebody knew and they pushed me. That whol e thing is kind of a blur for me.Â”
99 Sandra looks visibly drained at the memory. She sig hs deeply and I think about Tanya, my family member with AspergerÂ’s. The detail at which Donna retold the story of diagnosis and the services they sought out was incr edible, everything down to the very last detail. I wonder if SandraÂ’s lost memories are a product of her need to maintain an unbreakable exterior during the process. Coping mec hanisms vary from person to person and perhaps blocking the experience from her memory was SandraÂ’s form of coping with the diagnosis. Â“Once you get the ball rolling though, the service s are available to you. But, I am not very good at going after them. I made it work a ll of this time without the extra services so I figured, you know, what is the point? Some of the services I got by accident, just by asking a question. Sometimes we would get a new social worker and she would blurt something out. I found out that missed out on child daycare the whole time. From the time that Justin started school until last year we didnÂ’t have daycare support. I paid for all of his daycare. And then it comes out that we were supposed to have daycare. I find myself becoming frustrated. How can this hap pen? Luckily, Sandra had the means to pay for JustinÂ’s daycare, but what about t hose families who do not have the means? What happens to them? I understand that pare nts should be advocating for their children. However, how can we, as professionals, ex pect them to advocate effectively when they are not aware of what is available? We ar e the ones who are at fault, not the parents. I thought to myself, oh my God, are you guys going to throw me all that money back? Of course, they didnÂ’t but itÂ’s all right, yo u know, if he were normal I would pay for daycare anyway.Â”
100 It takes every ounce of self-awareness and control to not visibly cringe at the sound of the word Â“normal.Â” My experience as a prof essional comes at me like a pair of oncoming high beams, I wish I could shut my eyes un til it passesÂ…It is not fair of me to react like this. I immediately feel guilty as I bec ome aware of how any change in my demeanor has the potential to change the entire dyn amic of the interview, I can see how disconnect between the professional story and the f amily story can occur. Â“I feel really lucky because I had a lot of family support, my family support more so than PaulÂ’s family. His mom helped out a little bit when she was alive, but for the most part, my family did most of the daycare. If we wanted to go out or something, because my folks didnÂ’t really understand that, the n his mother would babysit. My parents donÂ’t really understand relaxation. Sometim es Paul and I really just needed some time for ourselves, you know, to go out to dinner o r whatever. When I asked my parents to watch the boys while we went out, they old me no They just werenÂ’t going for it. My mom and dad didnÂ’t understand. They raised seven ki ds. They never went anywhere. They still donÂ’t do anything. They didnÂ’t grow up t hat way, theyÂ’d say I wasnÂ’t a good parent if I did that,Â” Sandra laughs nervously. I g et the impression that her parentsÂ’ words impacted her more than she is letting on. To them i t was the stupidest thing on earth, so I had to find somebody else to babysit for time away from the kids.Â” Sandra shakes her head, looking a little flustered. She pauses briefl y, as if trying to figure out where she wants to go with her story. Â“So, anyway, back to how it all started. JustinÂ’s pediatrician sent us to a child psychologist for testing to find out really what wa s wrong. I remember getting the report and I remember my husband saying, oh, heÂ’s not ment ally retarded. Because thatÂ’s whatÂ’s
101 on the report, mental retardation, PDD autism, and it starts going on into more clinical descriptions of whatÂ’s going on. I just remember hi m saying, more than once, my sonÂ’s not retarded.Â” I am immediately reminded of my previous interview with Adriana, the mother to a Hispanic boy with autism. Her husband also had a difficult time accepting that his son may be different. Perhaps it is different for fathe rs; denial as a form of coping with the loss of an idealized son. Â“I would also say that there were a couple of momen ts where I think my family did not understand. For a long time, my dad said, Â“ there is nothing wrong with that boy. HeÂ’s normal, you guys are just messing him up.Â” My dad was in denial for a long time. He would say that we were not disciplining him enou gh. But now he gets it, he gets that Justin is different. I still think that PaulÂ’s fami ly truly does not understand that Justin is autistic. They just do not seem to get it. And I re ally was kind of numb more than anything about the whole situation.Â” NumbnessÂ…A feeling unlike any other. A defense mec hanism to block the pain of what is really happening. Not allowing yourself to feel, to experience the emotion of the situation. This was my experience when my uncle pas sed away. I had to remain strong for everyone else in my family as I felt the most remov ed from the situation. I did not allow myself to feel the pain of loss until I returned ho me and expressed my emotion through story. I wonder if the story Sandra is telling will be therapeutic to her in the same way it was to me. In a sense, we have both experienced los s of a family member. After the numbness passed, I realized that we neede d to do something we have this diagnosis and we have to deal with it, for Jus tinÂ’s sake, but I didnÂ’t know where to go
102 next. It was getting close to the time where Justin would start school, so I filled out some of the paperwork and included that he had been diag nosed with autism and PDD autism, but the school in Miller Lake did not have special classes. They were not prepared to deal with someone like Justin so they told us not to sen d him to school. They wanted to have him tested in order to find out where to place him. So, I thought to myself, here we go again!Â” Sandra rolls her eyes and throws her hands up in the air, indicating her frustration with the process. Â“We had to go through more psychologist tests, more doctor visits, more waiting. I could tell Justin was getting annoyed with the wh ole thing. First they send somebody to the house to talk to the family. They decide that t hey want to test him; then the school decides that they want to test him too. Poor Justin By the time we got to the psychologist in Sonoma, Justin just did not want to take any more tests, he was so upset. They give the same tests, over and over, just diffe rent versions. And I thought, man, I donÂ’t blame you. HeÂ’s just sitting here, and everyb odyÂ’s looking at him, making him do the same thing, walk this way, do this, look at thi s, do that. I could see him getting irritated by the whole thing, and I felt for him in that sense. This seems to be a common occurrence in the process associated with diagnosis. Test, after test, after test. I understand wanting to ensure an accurate diagnosis but it seems almost cruel to subject a child to such a pro cess. Is there an easier way that maintains accuracy but is also less burdensome for the child and the parents? Â“He didnÂ’t end up starting school until the middle of the year in January because they couldnÂ’t place him in Miller Creek. There was no special class. So Justin ended up going to a different school for Kindergarten. We de finitely had some concerns about him
103 going to school. We thought that he wouldnÂ’t unders tand or wouldnÂ’t be part of what was going on, or that he would get left alone. He did n ot have a lot of verbal skills at the time so communicating with him was difficult. That was r eally his issue. He didnÂ’t know how to say things. Everything was going really well unt il one day they lost him. I completely lost it! Sandra shrieks, with her eyes wide and fis ts clenched. Apparently, he was standing by the flagpole waiting for the bus, but n obody knew where he was. They found him eventually, but what really bothers me is that they turned around and told us that they didnÂ’t know where he was. I remember telling the te acher, Â“now IÂ’m worried about the school system. You know that Justin is special, he starts off in your class, then he goes to the other class, and then he goes back to your clas s. ShouldnÂ’t you be watching him? You are supposed to be taking care of my child! This is supposed to be a safe environment a nd you are going to stand here and tell me that you di dnÂ’t know where he was?Â” Sandra seems angry and I can tell that talking abou t the school personnel lost her son is bringing old emotions to the surface. You se nd your child to school, a place that is supposed to be safe, a place where you assume they are being looked after. To have that kind of faith broken must be very difficult. I am l eft with a feeling of unsettlement. Â“ItÂ’s like Darren, my older son, told me last semes ter. Â“I got a Â‘CÂ’ in class at the JC.Â” And I said, Â“well, thatÂ’s really good. IÂ’m pro ud of you.Â” But then he proceeds to tell me how he got the C. He said that he never went to class and barely finished his assignments but that the teacher liked him so he wa s nice enough to give him a Â‘CÂ’ when he really should have failed. So, I was like Â– donÂ’ t tell me all that. ThatÂ’s information I donÂ’t need to know. If I had just known that you ha d gotten the Â‘CÂ’ I would have been all right. So, if I had just known that Justin got on t he bus and came home that day, I would
104 have never known that he was standing by the flagpo le and nobody could find him, and that they didnÂ’t know where he was at the time. Tha t is when I lost all faith. I actually told the teacher Â“okay, now I have no faith in you people.Â” FearÂ…that is what I detect in SandraÂ’s voice. She i s reliving the experience while telling the story and it is having an emotional imp act on her. Looking back on my years in the classroom, I wonder what I would have done i n this situation. I think, for ethical reasons and to appease my own conscience, I would h ave confessed to the parent as well. However, as I try to envision myself as a parent, I am left feeling a bit perplexed. On one hand, I would absolutely want to know of the school Â’s error so that I could take steps to ensure it never happened again. Additionally, I wou ld have the option to remove my child from an environment I felt was not safe. However, t he loss of faith in the school system, a place that is supposed to do right by our children, would be a difficult thing to handle as well. It seems like a double-edged sword. Â“Right after that little incident, we had the oppo rtunity to transfer Justin to a different school. It was the best thing we ever did He was able to have the same teacher from first grade all the way until sixth grade, at the same school. There were ups and downs as far as the class size but overall, Justin did really well there because it was a nice, structured environment. I think what I learne d from that experience was that the teacher could be on your side, but theyÂ’re bound by what they can say. As we grew more familiar with the teachers, they would say more stu ff to you off-record about services and what kinds of things you can ask for. I really am n ot one of those people who was digging, digging, digging all the time trying to fi nd out what was out there. I always thought that if everything was okay, IÂ’ve accepted that heÂ’s autistic and that heÂ’s only
105 going to be able to do this much, then I donÂ’t real ly need to search for anything else. I didnÂ’t know what was out there could help him any m ore than what we were already doingÂ” I have seen this all too often in the public school sÂ…teachers who want to tell parents about available services or technology that would really improve the studentÂ’s outcomes. However, due to current budget crises and the fact that schools have pay for those additional things, parents are often left una ware. Many community organizations offer services free of charge to parents, to this e nd, I believe that teachers, schools and community organizations should develop partnerships so that everyone is on the same page as to what services are available to which stu dents. This information could then be communicated to parents rather than leaving them in the dark. Â“After sixth grade there was Junior High and in thi s area there are about 15-16 elementary schools that converge into one junior hi gh. It was very different from what Justin had in his special day class. They went thro ugh a slew of teachers in those two years so the classroom management was just not ther e. Everything became distracting to Justin, which made him a distraction to the class. He just could not handle all of the noise and commotion. The school called an IEP meeting wit hin the first few weeks of the year to tell us that this may not be the right environme nt for him. They really did not have a lot of options for Justin at that school so the Occupat ional Therapist (OT) decided to take him under her wing. Every time the classroom teache rs would have a problem with Justin, they would just ship him off to her room.Â” This is all too familiar to me. During one of my ye ars teaching special education at the elementary level, I would frequently serve a s the unofficial Â“time-out roomÂ” for
106 many students with disabilities who were included i n the general education classroom. While I did not mind having the students in my room I felt as if many of the teachers were abusing the Â“time-out roomÂ” because they simpl y did not want to deal with certain students. This frustrated me, but at least I knew t hat if the students were with me, there would be some kind of learning taking place. Â“One day, she called me and asked me to come down s o that I could observe Justin in his classroom; she said she was really wo rried about him. This, by far, was the most heart wrenching hour ever-in all the whole p rocess that weÂ’ve gone through.Â” Sandra takes a deep breath, closes her eyes, as if visualizing the experience in her mind, and continues. Â“Poor Justin! I swear, he had his backpack, which h e always carries with him. It was like he was on the outside looking in, just on the edge of everything but not a part of it. It reminded me of my sister, whoÂ’s a little bit slow, in high school. I was a senior, she was a sophomore. She used to hang out with me all t he time. And IÂ’d say to her, Â“you know what, you need to get your own friends.Â” Here I am, this is my paybackÂ”, Sandra sighs wistfully and I notice the remorse in both he r voice and her eyes. Â“You need to get your own friends. You canÂ’t hang o ut with my friends and me because in a year weÂ’ll be gone.Â” I said that to he r! Â“You need to get your own friends. I donÂ’t want you to hang out with us at lunch anymore .Â” I used to watch her do the same thing Justin was doing that day. SheÂ’d go get lunch SheÂ’d go sit somewhere. Then sheÂ’d go kind of sit next to a couple people and sort of talk to them. When they did not talk to her, she just walked around the campus the whole lu nch break. Well, thatÂ’s what Justin did on this lunch break, and I was so upset! It was like oh my God, I canÂ’t believe this!
107 HeÂ’s not really part of a group, but heÂ’s in and ou t. And he seemed to be happy, but you could tell that he really wasnÂ’t. Because if youÂ’re not part, my feeling is, if youÂ’re not part, then youÂ’re not really. And so we spent the w hole lunch hour watching him just kind of float in and out. That was a big eye opener for me. I had seen it before, and I thought to myself, oh man, this is not good.Â” The visual of Justin wandering around during lunch breaks my heart and I can see that Sandra is becoming emotional as well. Donn a, my family member, also commented on TanyaÂ’s Â“outsiderÂ” status and how she always felt as if Tanya was struggling to find her niche in life, a place where she belonged and was accepted for who she was. It can be difficult for children with disa bilities to develop and maintain meaningful and lasting friendships and as a result, they Â“floatÂ” through school never really belonging to a certain group or clique. The guilt Sandra feels is apparent by the comment she made about JustinÂ’s Â“outsiderÂ” status b eing payback for the way she treated her younger sister. I see the remorse in he r eyes and can tell that this memory still haunts her. Â“We spent the rest of the year working on JustinÂ’s ability to verbalize more. But the year just was a bust. He didnÂ’t learn anything really. I think a lot of that was because he went through three or four different placements that year. I finally I broke down and cried at the last meeting. The school told me that they really did not know which placement was best for Justin but that the placemen t they were offering was his last and only choice.Â” Â“Did that make you feel as if they were just trying to pass Justin along, as if they did not want the responsibility of dealing with him ?Â”
108 Â“That is exactly how it made me feel! I could tell they just did not want him at all based on what happened in the last two years, not t he great five years before that, but the last two years. They really didnÂ’t give me a choice And I sat there, and I cried.Â” Even as I write this now, my eyes fill with tears and my heart swells with emotion for Sandra and all of the other families who have e xperienced similar interactions with the school system. How agonizing it must be to feel as if your child, your own flesh and blood, is not welcome Â– unwanted, especially in a p lace where they are supposed to be building a future. What kind of hope does this give to parents? Â“I finally realized that maybe they were right, ma ybe this was not the best placement for him. There was another time I went to observe Justin and he started banging his head on the door! And IÂ’m like, what is that? IÂ’d never, ever seen that behavior. I mean, heÂ’s got teenage tendencies. He l ikes girls. He got taken advantage of by a bunch of girls in junior high, because he was in love. Â“But theyÂ’re my friends, mom.Â” Â“Okay, your friends donÂ’t take your money Jus tin.Â” He just wanted to be liked. He did whatever they wanted so the other kids would li ke him. But when I came into that class and he was banging his head on the door, I th ought to myself, thatÂ’s not my kid! ThatÂ’s not how he is at home.Â” I am reminded of my family member, Tanya, who is di agnosed with AspergerÂ’s Syndrome. Her mother told me a very similar story a bout Tanya and how she would do almost anything to feel as though she belonged, to become an insider, a part of something. She was taken advantage of several times by people who pretended to be her friends so that they could get something from her. I feel sick at the memory. As a teacher, I can now see where some of the animosity between p arents and teachers can begin. I
109 have spoken with parents on several occasions regar ding their childÂ’s behavior and thought they were in complete denial because they r efused to accept that their child Â“could do such a thing.Â” Looking back, inviting the parent to come and observe so they could see first hand is a logical suggestion. This could help to bridge the gap between home and school and facilitate the development of a positive collaboration between parents and teachers. Â“After junior high, he ended up going to a high sc hool down in Glen Park. There were two classes at the school that we could choose from. We interviewed one of the teachers and all she talked about was vocational cu rriculum. I was really thrown off by that. Justin was only 14 years old and she was alre ady talking about teaching him how to get a job. I felt as though that was all she though t he could do with his life. ThatÂ’s not what I want. I really want for him to continue read ing and writing and math, the basic skills that you get in school. Now, I get itÂ”, Sand ra says matter of factly. Â“HeÂ’s not going to be a scholar or anything like that, but he shoul d be able to reach his full potential in the academic areas. I did not like that there was so mu ch of a focus on life skills. I wanted it to be more on education.Â” I smile as I listen to the passion and determinatio n in SandraÂ’s voice. She understands that Justin may have limitations but sh e does not allow these challenges to get in the way of her dreams and aspirations for he r son. I find it truly admirable and silently applaud her for advocating for her son. Â“Then something incredible happened, oh my God, if you believe in God or a higher power. Someone must have been looking after Justin and the family.Â” Sandra clasps her hands together and smiles, the excitemen t in her voice is evident. Â“Our cousin
110 Mike, who had been teaching kids with developmental disabilities for a lot of years, was offered the job as the teacher in JustinÂ’s class. I thought, here we go! We get a great teacher-finally! The classroom makeup is not the greatest but Mike always makes sure that instead of going to the church to help clean o r whatever other activity they are doing for their vocational work, Justin stays in the clas sroom and he does math, reading, or practices writing. In fact, we just had the IEP thi s month and Justin met all of his goals!Â” Sandra is elated at the fact that Justin has met al l of his goals. She is practically beaming from ear to ear with pride for her son. One of my favorite memories of teaching elementary school special education was being able to tell the parents that their child was making progress and had successfully mastered t heir IEP goals. The looks of relief, happiness, and even surprise is indescribable. I of ten left those meetings with tears of happiness because the parents themselves were so em otional. Letting parents know that you believe in their child is sometimes all it take s to instill a renewed feeling of hope. Â“There is one problem with the program though, and I have voiced this concern to Mike as well. The kids have virtually no social int eraction. They have their own program, they are on their own bus, they do no integrate wit h the regular school, the kids just kind of sit off to the side, you know. We started off th e school year trying to get them into PE, at least, but there was no room for the special ed. kids in PE, none of the teachers were willing to take them. Mike tried, but being a new t eacher at the school and not knowing anyone made it Â– he was trying but he was never abl e to get anybody to take them. I think it is really important for Justin to have some soci al interaction with the rest of the school so we made sure to include it on the IEP for next y ear. Justin is going take a regular class, either math, or music, or computers or something.Â”
111 Â“Overall, school has been interesting. It has been a journey, learning all of the ins and outs. I guess if I had put my mind to it a litt le bit more, I would probably be more savvy about getting things for him. Some things you just stumble upon and it turns out to be a really good thing. In my opinion, thatÂ’s bette r than being in somebodyÂ’s face all the time. Some parents are really aggressive about that IÂ’ve never been that way in life anyway, so it doesnÂ’t fit my personality. But I thi nk weÂ’ve done all right for him overall, heÂ’s doing okay.Â” Â“What about you Sandra? How do you feel about this journey has imp acted you ?Â” Â“I have definitely had my moments where I cry and w onder why. But I just tell myself, this is the way it was supposed to be. And heÂ’s special. HeÂ’s special where he is now. The students in the class look up to him, and they love him. HeÂ’s the leader of the class, even though thatÂ’s probably not the best pla ce for him to be. I keep saying there should be a world for in-between-ers. Because he ca nÂ’t be in the real world over there at Miller Lake, but heÂ’s a little too much for where h e is now. But, you know, where he is now, heÂ’s pretty happy. That is what is important t o me, that is what makes me happy. As a parent, you want what is best for your kids and I feel as though we have done the best we can. I have never felt like JustinÂ’s disability was a burden or anything like that. I love him to death. HeÂ’s just the cutest.Â” Â“Did your career path change at all during the cour se of this experience? Do you think JustinÂ’s diagnosis impacted that for you in a ny way?Â” Â“I always had a goal of being a retail store manage r and the year Justin got diagnosed was the year I was promoted. So, no, I th ink I am where I would have been anyway. I think that I am way farther than I ever t hought I would be. I really didnÂ’t have
112 a goal of having kids, and I had two of them,Â” she laughs. I always thought I wanted to be a store manager, I just didnÂ’t know it would be at the store I am at today. I was an Assistant Manager there for 10 years. As far as Jus tinÂ’s impact, well in retail, a lot of times you can work around some of the things you ha ve to do for your kids. ItÂ’s like a perfect job. So, I donÂ’t ever want to be anything o ther than a store manager. ThatÂ’s where my head is, so career-wise, IÂ’m okay.Â” Â“Is there anything else you would like to share abo ut your experience?Â” Â“I think it is really important for parents to unde rstand that sometimes they need help. I got plenty of support from my family with b abysitting and stuff like that, but it is the normal, everyday type stuffÂ…cleaning, gardening you know maintaining the house that can really become a burden. So, I think that p arents should just ask for help and get support, because it is not an easy road and the s upport, it makes a big difference.Â” Â“Thank you so much for sharing your story with me S andra, it was really powerful and I admire you for how strong and resili ent you are.Â” Â“It was great to talk about it actually. I was a li ttle nervous at first because I had this idea that it would be like talking to the psyc hologists all over again. But it really is nice to talk about it and have someone listen to an d understand everything that we have been through. Will I be able to see the final produ ct?Â” Â“Of course, I will call you once everything has bee n transcribed and we can meet up to review everything, you know, make sure it is accurate. Then, I will write it up and share it with you.Â” Â“How exciting!Â” Sandra stands and reaches out her a rms. I hug her back and thank her again for her willingness to speak with m e. We exchange our goodbyes and
113 make arrangements for a follow-up visit. As I get i nto the car I begin thinking about the story that was just shared with me. I am deeply tou ched and impacted by SandraÂ’s willingness to share her experience with me and it makes me wonder how many caregivers just want to be heard, understood, and r espected. Our final meeting to conduct member checks occurred approximately two weeks after the final interview. Instead of going to Sand raÂ’s house, we met for coffee at a local caf. SandraÂ’s reaction to the story was something I never expected, it brought tears to her eyes. Â“You know, I have never had anyone to tal k to about this and I am so thankful that you were there to listen. I read this and I th ink, wow, this is my experience, this is what I went through, this is my story And you know what, itÂ’s not half bad,Â” she laughs It makes me see things from a totally different per spective. When we first received the diagnosis I was unsure and confused and now I feel strong. I feel like as a parent, I have done good.Â”
114 Chapter Six AdrianaÂ’s Story Adriana is a 36 year old mother of two who was bor n in Mexico. She moved to the United States when she was 9 years old. She spe aks both Spanish and English fluently, although English is her second language. She has a college degree and currently works as an Esthetician in the Day Spa that she own s, she also works part-time in a doctorÂ’s office doing skin care. Her husband is Cau casian and works as a business executive in San Francisco. Their combined househol d income exceeds $100,000.00. I found Adriana with the help of a teacher who curr ently works with our University credential candidates. I was having trou ble locating a caregiver of Hispanic decent who was also fluent in English so I contacte d her to inquire as to whether she had anyone in mind. She said that she had the Â“perfectÂ” person for me but would need to ask if she were interested in participating. I heard ba ck from Lisa in a matter of hours with AdrianaÂ’s contact information. As it was later in t he afternoon, I decided to wait until the following day to initiate contact with Adriana. I a rrived home around 8pm that night to find the message indicator blinking at me. I presse d the button and was met with an unfamiliar voice. Â“Hi Heather, this is Adriana. Lis a gave your contact information because you are doing interviews with parents of ki ds with autism. I would love to connect with you so please give me a call back at your earliest convenience. I canÂ’t wait to talk to you sweetie!Â” By the time the message en ded, I was grinning from ear to ear.
115 Adriana sounded so excited to speak with me and tha t made me even more eager to speak with her. There was something about the tone of her voice that immediately put me at ease and gave me a good feeling about the interview My hand reached for the receiver to dial but I stopped myself as I realized that it was after 8pm and she had a 6 year old child. I certainly did not want to start off on the wrong foot by calling too late in the evening so I replaced the receiver with full intentions of cal ling her first thing in the morningÂ…well, maybe not first thing, but as early as would be polite. Â“Hi, is this Adriana?Â” Â“Yes it is.Â” Â“This is Heather, Lisa gave me yourÂ…Â” Â“Oh hi sweetie! It is so great to hear from you! Li sa told me all about the interviews that you are doing and I think that it i s so great. I would love to connect with you and tell you all about my son Cruz. Does anytim e this week work for you?Â” Â“Absolutely! I am free Thursday after 3pm and Frida y all day. Is there a particular time that works best with your schedule?Â” Â“11:00am on Friday would be perfect.Â” Â“That works for me as well, I would be happy to com e to your home if you are comfortable with that.Â” Â“Oh, absolutely! That would be wonderful, then you can see CruzÂ’s room and his environment and everything!Â” I almost cannot believe the conversation that I am having. Adriana seems so open, so willing, so excited to share her experienc e. I have not even met her and I can already tell that she is a very dynamic individual.
116 Â“That sounds wonderful. I am really looking forward to meeting you Adriana!Â” Â“Same here, sweetie. You take care and let me know if anything changes.Â” We exchange our goodbyes and I realize that I did n ot even tell her anything about the study, its purpose, nor the structure of the interviews. I wonder if I should call her back but then decide that I will explain everyt hing to her when I meet her on Friday. Friday comes with great anticipation. I am like a k id who is anxiously awaiting a trip to Disney World. I cannot believe how excited I am to sit down with Adriana. I am not nervous as I was with CameronÂ’s parents, nor am I hesitant as I was prior to meeting Sandra. I feel as if I am going to meet up with an old girlfriend who I have not seen in ages. My GPS chirps and brings me out of my daydrea m, Â“arriving at destination, on right.Â” I look to my right and see a handsome singl e story house with a wrought iron entry gate. The gate opens as I pull into the drive way and down the incline which leads to the house. The house is definitely under constructi on as there are dirt mounds and piles of rock which looked to have been pulled up in order t o make room for a large landscaping project. I look to the left and I see Adriana walking towar ds me, smiling and waving. She is absolutely stunning, one of the most beautiful w omen I have ever seen. She stands about 5Â’4, has shoulder length black hair, brown ey es, and dressed impeccably in black pants and a matching blouse. I get out of the car and walk over to meet her. She reaches out and hugs me. Â“It is so wonderful to finally mee t you Heather, I was so excited to talk with you about my son and your work. I think what y ou are doing is really special and I admire you so much. Please, come on in and pardon t he mess. We are in the process of redecorating. It will be lovely once it is all fini shed.Â” She goes onto tell me about the
117 plans she has for the garden area and how the concr ete room that greets you upon entering the house is going to be transformed into a formal dining room which overlooks the garden. Â“Right now, though, the boys love to sk ateboard across it!Â” she laughs. I smile warmly at her and tell her what a lovely home she has and how wonderful it is to meet her acquaintance. She leads me over to an over sized dining room table where she sits down at the head of the table and motions for me to sit to her immediate left. Â“Can I get you some water or lemonade?Â” she asks, getting up. I politely decline and she sits back down. I thank her again for taking the time to speak with me and take out my informed consent documents to explain the purpose o f the study to her along with the format of the interviews. Â“So today is just kind of like a meet and greet?Â” she asks a bit disappointed. Â“That is what the intent was,Â” I say, wishing I wo uld have explained the interview structure that day on the phone. Â“I was also going to leave this tape recorder with you so that you could have the freedom to talk about your thoughts and experiences without the pressure of an interviewer present.Â” She looks at me and smiles, Â“sweetie, I would much much, much rather talk to you than that tape recorder. I think you are a beau tiful person, I just get this amazing vibe from you, like we were meant to meet or something.Â” I feel my cheeks turn red at her compliment and tell her how excited I was to meet h er after we spoke on the phone. Â“I felt as though I was having a conversation with one of my girlfriends!Â” I say candidly. She smiles, Â“I was just so excited to tell you eve rything today, it has been a long time since anyone has wanted to hear about my life with Cruz.Â” I think for a moment and
118 wonder how critical it is that I follow the initial interview schedule protocol that was set forth. I look back to Adriana and say Â“well, if you feel comfortable enough, I would be willing to do the interview today.Â” I really hope I do not get in trouble for breaching protocol, I just could not bear the thought of disa ppointing her. Â“Really?Â” she asks as her face lights up. Â“Absolutely,Â” I say without hesitation. I feel the need to go with my gut on this one. Adriana seems so genuine and I felt comfortabl e with her from the moment we met. I can always schedule another interview should this one leave gaps. Â“So, where should I start? I guess at the beginnin g right?Â” she says, laughing. Â“That would be great! Do you mind if I turn the ta pe recorder on now?Â” I ask. Â“Oh sure, that way you wonÂ’t miss anything! So, my son Cruz was diagnosed with PDD, which is Pervasive Disorder Development a nd I had no idea what that was. They said that he was showing some signs of autism but they were not so blown, and that he also had a speech delay. I wanted to learn more about it so I just went on the web and I started researching what that meant.Â” Adriana is very animated while she is talking, prac tically bubbling over with excitement. I wonder if she has ever had the opport unity to talk about her son in this way. She seems so open and honest, almost as if the stor y has been building inside of her and she has finally been given the opportunity to let i t out. Â“It has been three years since he has been diagnos ed. He is six now and we started the process when he was three. Since then, it has b een quite the journey, we are doing a lot of alternative medicine which is really working ; it is just so positive. The medical
119 industry, they just want to diagnose and they want to give you medication and say Â“OK, go away, you are fine.Â” But with autism, what we ha ve found out is that their body is so toxic and their system does not break down toxins l ike normal kids.Â” AdrianaÂ’s knowledge is incredible. She went search ing for answers to her sonÂ’s disability and refused to accept the medically base d treatment at face value. I find this very brave, as I do not know if I would have the co urage to utilize alternative medicine for fear of further impacting my child. Â“The doctor gave Cruz ADHD medication and that is e ven more toxic so I decided to do alternative medicine. Lots of vitamin s and supplements and most recently, the hyperbaric oxygen chamber, have you heard of th at?Â” Â“No!Â” I say completely enthralled. Â“Tell me about i t!Â” Â“Well, we have it tonight and I go all the way ove r the hill to St. Curie. It looks like a tablet and it is what divers use when they g o out in the deep sea. When they come back they put them in this oxygen chamber and it st imulates cell production. In kids with autism it has an impact on the pressure in the brai n and it kick starts all of the functions that are not connecting properly. It also promotes healthy white cells so it speeds up the process of healing. So that is what we have been do ing and it has been amazing!Â” The excitement in her voice continues to grow as she ta lks about the impact that the oxygen chamber has had on Cruz. Â“It has just been so amazi ng, you know he has some little characteristics. He jumps and flaps his hands and m akes little noises but after being in the chamber for 30 minutes, he was just so calm. He lai d his head on the pillow, and was just really relaxed. So after the 50 minute session we g ot out and, no joke, he did not jump-he did not do any of his hand flapping for 3 whole day s. It was just incredible.Â”
120 Â“I guess I should have started at the very beginni ng!Â” she laughs. Â“I donÂ’t mind at all, you can start wherever you w ant,Â” I say with a smile. I am truly captivated by her story. Â“So, when Cruz was born, I had no symptoms. I had a perfect, healthy pregnancy, he was developing perfectly. But, when he was born, her had thrush. They called it candida I did not know what that was at the time so they told me it was thrush and they gave me this purple-violet medication. I had to do a little swab of it in his mouth and that was supposed to get rid of the bacteria. We did tha t for about a month and finally it went away. But, what we found out recently is that when a child is born with that, it tends to be internal and you need to be treated with antibiotic s. Well, the doctors didnÂ’t do that,Â” she says shaking her head. Â“I believe it started there and I think that the candida broke down his immune systems because that is what it does. Bu t there were no signs, I mean, he walked early and he even talked at 5 months, he wou ld point, everything developed normally. He was such a good baby, he slept through the night, he didnÂ’t cry. What I did notice though was at about 2 years and 2 months he had his vaccines. MMR, chicken pox and something else, there were 4 shots. So, I broug ht him home afterwards and he was like Â“Owie!Â” and rubbing his thighs. So, I took his pants off and he had hives the size of tennis balls, they just started crawling all over t he body.Â” I gasp audbliy. Â“I know!Â” Adriana says, a worried look in her eyes. Â“I called the doctor and they told me that he must be having a reaction to the vaccines and that I should give him Benadryl. I was so scared because the hives were just crawling up his body so I decided to take him to the hospital. Benadryl was not going to do it. I rushed him in and they were like Â“ooh this is a
121 really bad reactionÂ” so they gave him a shot to rev erse it. After that, I noticed that everything stopped.Â” This is not first time I have heard a parent indica te that their child was going through typical development until they received the ir MMR vaccines. While my professional experience reminds me that studies hav e shown that vaccines do not cause autism, I find myself questioning the extent to whi ch I believe these studies. Perhaps the vaccines trigger something else within the body tha t has been dormant up until that point? I do not understand how everything can just stop after a vaccine has been given but yet not be related to the onset. Parents know t heir children, they know when something is wrong, Adriana is convinced that CruzÂ’ s development came to a standstill after the administration of the vaccine. I feel tor n between science and experience. Â“He started going backwards, he did not want to ta lk anymore, he wasnÂ’t happy.Â” The tone of AdrianaÂ’s voice changes and is now somb er as she retells the story. Â“He started getting rashes all over his body, just out of the blue. Just all of these weird things. He started preschool when he turned three and even though his speech went backwards, he was still able to communicate. I said to my husb and something is wrong, something is not right. But my husband kept saying that he was j ust a late speaker. Everybody would tell me, even his pediatrician, told me Â“he has big brother to do all the talking, he will develop, the younger child always speaks later beca use they have the older sibling to do all the talking.Â” How frustrating it must have been for Adriana to be continuously rebuffed. My mother has always told me that a motherÂ’s instinct is the best kind; it seems as though this rings true for Adriana.
122 Â“So, I let it go for the time being and took him t o preschool. I told the teacher about Cruz and where he was at, what I thought and about a month into school, she came to me and said Â“you know Adriana, I really think th at your son might have autism.Â” And I did not know what autism was, it was the first time I had ever heard of it. At first, I was a little hurt by the teacher.Â” AdrianaÂ’s brow furrows and she leans in towards me to emphasize her feelings. Â“I was like how dare she s ay that my son have autism because I was just so protective. I guess I always thought th at kids with autism were like Rainman or what you see at the state hospital. I never knew what that word meant.Â” I admire AdrianaÂ’s candidness and think about how m uch unawareness there is about the disorder. Many people hear the word autis m and respond exactly as Adriana did. I hope that these stories will contribute to t he efforts designed to increase awareness about the diversity of the disorder and the differe nt ways in which it can manifest itself. Â“I came home and I was all freaked out. I was like Oh my God. She is a teacher. To be honest, part of me knew that what she was say ing was true. I looked it up on the web and there was a little bit of information, but not like it is now. I called his pediatrician and told him what the preschool teache r had said. The pediatrician said Â“Oh no! He is not. Do you want me to write her a letter ?Â” I told him no because I did not want to start any kind of fight, but I wanted to know wh at was wrong. So I asked if I could bring Cruz in for an overview. The doctor said that he would have to send me to a behavior specialist and that it would take a long t ime. I told him to get the process started because I did not want to wait any longer. In the m eantime, he continued to go to preschool and that helped. But, he was not progress ing like the other kids. He entered preschool at 3 years old and by the time I got him enrolled in a special day class with the
123 county he was 3 years, 8 months. So, it took 8 mont hs to go through the process because I had to get him diagnosed through the regional cente r and then Sonoma county. Let me tell you, it was quite the process. Dealing with in surance has been a complete nightmare!Â” Why? Why is the process so long and tedious? I unde rstand the importance of ensuring an accurate diagnosis but it seems as if t he system makes parents jump through hoops in order to receive services for their childr en. We stress the importance of early intervention but when a diagnosis takes 8 months to secure, how is that helpful to the child or the family? Â“But, the program that he is now is great, he love s it! The atmosphere just seems really calming for him. He is doing amazing. He is talkingsaying three words sentences. He is pretty independent and bright in other areas, but in speech, that is where he was affected. He currently speaks at about a 4 year old level, and he is 6. But, for a while there, he was 5 and talking at a 2 year old level s o he has really made a lot of progress.Â” Adriana just radiates positivity. She smiles as sh e tells me how much progress Cruz has made and it is obvious that she is very pr oud of her son. I believe that the experience is what you make of it. Adriana chooses to focus on the positive, which in turn, creates a perception that minimizes the negat ive impact of the disability. Disability has typically been viewed through a deficit based l ens and I appreciate AdrianaÂ’s determination to focus on the positive. Â“I think a lot of it has to do with the alternativ e medicine that we use. I had blood, stool and urine tests done and it turned out that h e was really lacking in vitamins. He lacked in B12, magnesium, and especially Vitamin A. Instead of making 80% of vitamin
124 A like our bodies normally do, he was only making 1 0%-and vitamin A acts as an antioxidant so his body was not breaking down the t oxins. The buildup made it really difficult for him to concentrate. He felt uncomfort able in his own body, his sensory skills were off. But, since I have started the vitamins, h e is like a new kid. He sleeps through the night. I know it sounds like I am complaining a bout all of this but it has just been such a blessing to me to have a child like Cruz bec ause I totally see a different side of disability now.Â” Adriana is so sincere in her words and I can tell s he really does see having a child with autism as a blessing. Her love for him i s evident in the way she talks about him, her eyes light up, she becomes animated. She h as truly embraced the experience. I often wish that CameronÂ’s family would have seen Ta nya in the same way that Adriana sees Cruz. I wonder if their perception of Tanya ne gatively impacted the amount of caregiver burden that Donna experienced. Â“It has just really blessed us in a lot of ways. H is older brother, Raul who is 9, is really great with him. I sat him down and explained to him that his brother was special and now he just really takes care of him. We were a t this function, at a book fair, and one of the kids came up to Raul and was like Â“hey, what Â’s up with your brother? Is he stupid?Â” I did not say anything because I wanted to see how he would respond. Raul looked at that kid and said Â“my brother is not stup id. You know, he rides a motorcycle, and it is a gas operated one, do you ride a motorcy cle?Â” and it just broke my heart. I had to turn around because I almost started to cry.Â” I feel the tears well up in my eyes and I hold them back. I look down at my notebook to avoid her gaze. I often wished that Cam eron would exude the same kind of
125 brotherly love for Tracy-and maybe he did in his ow n way. It was never something to which I was privy but I would like to think he woul d stand up for in the same situation. Â“He is just such a blessing to us. You know, God d oes not give us more than we can handle. Of course, I have my days and I think, can I find hope today? Am I on the right track? Am I doing something to his body that I should not be doing? But I am just the kind of person that tries everything. I read up on the latest research, that is how I found out about the hyperbaric oxygen chamber.Â” Â“Overall, in terms of our family, I just really fe el like it has been such a blessing. This is the third or fourth time Adriana has used the term Â‘blessing.Â’ I am inspired by her positivity but wonder if deep down this is s ome sort of defense mechanism. I do not want to negate her experience but yet I find myself questioning her overzealousness. On the other hand, AdrianaÂ’s ability to positively ref rame the experience could certainly contribute to her current perception of the presenc e of the disability as a blessing. Â“Sometimes it can be hard if we go to Chuck E Chee se or a birthday party. I know that it is hard on him, but I take him anyway becau se I feel that he needs to be exposed to that, he needs to do everything that normal kids do It can be tough though, when we go to birthday parties the moms will kind of stare at you and then start staring at Cruz. They ask Â“what is going on with your son?Â” and at first, I felt-not embarrassed, never embarrassed-but I didnÂ’t want to talk about it be cause it hurt too much and I did not want to make him look bad. But then I figured the m ore I didnÂ’t talk about it, the worse it was. So, I found that talking about it is easier be cause a lot of people do not know what autism is and once I explained it, they were more r eceptive.Â” Adriana continues talking about the importance of not hiding the disability, indicating that she is unashamed of her
126 son and his disability despite some of the negative reaction she experienced within the community. Â“Cruz has been invited to so many more p arties and functions now that people know so I am glad I got over the hurt and wa s able to tell people his story.Â” Adriana goes on to talk about her more recent exper iences with parents and how blessed she feels to have the life she has been given. The love she has for her family is evident and I can tell that the relationship she has with h er husband is one of mutual respect and love. Â“And my husband, he is just amazing.Â” AdrianaÂ’s fa ce lights up at the mention of her husband. Â“He is my backbone and he is just so s upportive, my in-laws are wonderful as well. We all work together, you know. We are ver y close-knit. If I find new research or something I make copies and share it with everyo ne.Â” AdrianaÂ’s tone becomes more serious. Â“My family has been kind of interesting th ough. You know, I have to translate everything for my mom because she only speaks Spani sh. At first I was kind of apprehensive to let her talk to Cruz in Spanish bec ause of his speech delay and the school said that I should just speak to him in English so that he doesnÂ’t get confused. But, I thought about it and I was like, no! This is his cu lture and he is young and he will absorb it and he will learn it. I think it has been great for him too, he does not speak a lot in Spanish, but he understands it all.Â” I can tell that Adriana feels strongly about her Me xican heritage and her desire to expose Cruz to it despite the recommendation of the school is inspiring. I feel a bit disconcerted that the school would discourage a sec ond language being spoken, it seems as if they are responding from more of a deficit mo del where the focus is on what Cruz is
127 unable to do rather than his potential. Adriana cle arly sees her sonÂ’s potential and capitalizes on it at every opportunity. Â“Everyone in our family is just so great, and I kn ow there are a lot of women out there who do not have that support and my heart goe s out to them because it is hard. Â“I could imagine in a relationship too, that it co uld be difficult between a husband and a wife, especially for a man. Just recently, I asked Cruz, do you want to play baseball?Â” And he said Â“yeah!Â” I was really excited because sports were always kind of a challenge. So I took him to the T-ball program at t he Boys and Girls club but it was too much for him. I noticed that he kind of started bac king away and was wrapping himself around my leg. I think just paying attention to you r child-that is just huge because they will tell you what they are feeling. And I knew rig ht then that this was not the right place for him.Â” It is amazing to me how Adriana is so in-tune with her son. She clearly has a special bond with him and understands him in a way that no one else does. I find my mind wandering back to CameronÂ’s family and how dif ferent their interactions with Tanya were. Donna seems to share that same kind of bond with Julie, CameronÂ’s older sister and I often felt as though Tanya was left ou t of many of their mother-daughter activities. I question whether or not the bond betw een Adriana and Cruz contributed to AdrianaÂ’s ability to positively reframe her role as a caregiver to a child with ASD. Could the lack of this bond be part of the reason for the burden Donna felt towards her role as a caregiver? Â“So then I researched the Special Olympics and my h usband had a really hard time with that. He said Â“no, Cruz does not belong t here.Â” And I said, Â“honey itÂ’s not
128 about belonging, itÂ’s about whatÂ’s easier for him a nd what is right for Cruz. I know you want to say he is good at sports, but the other pro gram is a little bit too much stimulation for him and he is not absorbing it, he is shutting down because its freaking him out.Â” So we talked about it and he just felt strongly that C ruz did not belong there. We went back and forth for awhileÂ—we would talk about it and the n not talk about it. We did that for about a month before I just decided to make the app ointment and go,Â” she laughs mischievously. Â“I had the kids all dressed up, Cruz had his baseball glove and we were basically walking out the door. My husband stopped and asked me where I was going. I told him we were going to sign-ups and he said Â“sig n-ups for what?Â” I said Â“T-ball for Cruz.Â” I could tell he was a little upset because h is face got a little red and he said Â“I thought we decided we werenÂ’t going to do thatÂ” and I said no, Â“you decided we were not going to do that, I did not. You are welcome to com e but you have 5 minutes to get ready.Â” He started mumbling about this and that and I told he did not have to go,Â” she smiles again and winks. Â“I told him that I was goin g because I really wanted to see what they offered. Finally he gave in and told me to wai t while he got ready. LetÂ’s just say it was a very quiet drive all the way to Santa Rosa. What tenacity! Adriana truly is a strong woman who wants what is best for her son. It is also apparent that she understands her h usband and how he might react to the situation. She did not want to disrespect his opini on as she gave him the option to come along, knowing that he would take the bait. Â“When we got there, it was the coolest thing. It wa s a great experience for my older son because life is not about everyone lookin g the same and learning the same. Cruz comes up and they do the tryouts and he hits i t, he is really coordinated when it
129 comes to sports. I noticed that while I was filling out the paperwork, my husband was just sitting there, looking around. I think, as a man, i t is a lot harder for them to think, Ok here is my boy, but he is not going to be a star player. I think it is harder for them than it is for moms. The most incredible thing happened next, the coach, who has Down Syndrome, comes up to my husband and says Â“well you look very sporty, would you like to coach?Â” A smile appears on AdrianaÂ’s face and she giggles l ike a school girl. Â“The look on my husbandÂ’s face was classic! He had no choice but to say yes! It was so perfect! He agreed to be the Assistant Coach and thank God it all work ed that way because I think it really helped him see it in a different light.Â” Looking back, I wish I would have sought out more m ale participants. AdrianaÂ’s perspective is interesting and it makes me think ab out the different ways the diagnosis of a child with a disability can impact a man and a wo man differently. I also wonder if having a son with a disability impacts fathers more than having a daughter with a disability would. Is the same true for mothers or i s it reversed? Â“I think in a relationship, in a marriage, I can se e where that would be tough, especially in Latin families. For me, because my hu sband is American, I have a little more balance. But if my husband was Mexican, I thin k it would be really hard because they are very macho. Their kids have to be perfect, they have to act perfect and being out of line means big problems. It is really interestin g, in a Latin couple, in a Mexican couple, the husband is a little bit more aggressive and they do not believe in all of the alternative medicines, they just believe in going t o the doctor. So the vitamins and outside services I have gotten for Cruz would not fly if I had a Mexican husband. I have a cousin down south who is struggling with the same, her lit tle boy is 4 and they came to Sonoma
130 to visit us. And because I have been working with C ruz, I was able to pick up on little characteristics. So, I said to her, I donÂ’t mean to get into your life but I really think you should have your little boy tested because I think he is showing signs of what Cruz has. And she says, Â“oh no, he is nothing like Cruz.Â” I s aid, Â“I am not telling you to hurt your feelings but I am just saying that the earlier you catch it, the better because it will take time to get him in the right classes.Â” Â“Her husband came to me later and said Â“oh, no, he is not retarded!Â” And I said, I am not saying he is retarded, he is far from that b ut maybe you should do some research on autistic kids because they are brilliant. You mi ght have an inventor on your handsand I was trying to make it more positive.Â” How hurtful that must have been for Adriana. I find it admirable that, despite his cruel words, Adriana was still able to shed positiv e light on the situation. Had I been placed in this situation, I am not sure I could hav e shown as much class and grace as Adriana was able to do. My first instinct would hav e been to defend my child, likely leading to an intense verbal altercation. AdrianaÂ’s capacity to remain calm and collected is illustrative of her acceptance of and devotion t o her role as a caregiver to a child with ASD. Â“Still, they have not done anything and their littl e guy can barely talk and they keep saying Â“oh, you know he just turned 4.Â” Well, at 4 you should be almost reading. The way they are handling it, just makes me feel th at I am so fortunate because my husband is very supportive and he is totally into r esearching the web, letÂ’s search for this vitamin, letÂ’s see what this does. I am very fortun ate to have that because I think if it was
131 a Mexican father, I would not be able to do those t hings. It is just interesting to see that dynamic.Â” Â“How did it make you feel, their reaction towards y ou?Â” I ask cautiously, anticipating this could be an emotional memory for her Â“I felt like they were judging me and I think they thought that Cruz was not smart. They looked down on me, felt sorry for me. The way he came to me when he said, Â“you know, heÂ’s not retarded,Â” it took everything I had to stay calm. But then I thought this man does not know much, he is not educated, so I ha d to forgive his words-he just doesnÂ’t know. We had a family reunion not long afte r and I have an aunt, who is very good with Cruz, always loving on him. But she came to me and said, Â“well, did you drink when you were pregnant?Â” And I said Â“no, Thalia, yo u know I donÂ’t drink.Â” As a mother you already kind of blame yourself. I have thought to myself, did I eat too much fish? Did I eat something with mercury in it? You just ki nd of blame yourself for things. Maybe he ate something when he was young that was t oxic and you think about all of that. She was telling me that Â“studies say that if you drink when you are pregnant thatÂ…Â” and I said, Â“yes, I know the studies but I did not drink and right now nobody really knows where it is coming from.Â” I can tell that Adriana has come to terms with her AuntÂ’s accusations. Her calm demeanor is indicative of a woman who has endured m uch, but has persevered and learned to accept and cope with the harsh comments to which she has been subjected. Â“And now, you know, autism is becoming really prom inent in the Mexican channels and I will get calls from my family member s in Mexico telling me that the doctors down there are curing it. But I told them t hat this canÂ’t be cured-you can heal
132 the children by teaching them differently and using supplements. But I just think they are very far from knowing what the truth is. Right now, we are just trying to put the pieces together and that has been difficult. We know it is genetic is nature so we both feel guilty, we just want to know how it happened. I canÂ’t even begin to tell you about all the directions I have gone in, just to try and put the pieces together so we can say ok, this is the route we are going to take. Ever since we got t he diagnosis, we have been trying to figure out which way was best.Â” It is not the harsh comments of others that continu e to haunt Adriana, but rather the self-blame and guilt that she harbors for someh ow contributing to her sonÂ’s condition. She looks as if she is trying to hold ba ck tears at this point. I want to reach out and touch her hand-let her know that this is not he r fault, neither her nor her husband are to blame. Maybe her continued search for the ne west treatments is her way of making up for her feelings of guilt. Â“Can you tell me a little bit more about how you f elt when you received the diagnosis? Were you relieved? Were you scared?Â” Â“You know, I felt upset because I will tell you ho w they told me. It took 8 months to get this appointment and we were so hopeful! We figured that we would go in and they would help us and we would have all these new amazi ng things to do to help Cruz. So we go there and they took us into a room and took Cruz into another room. We were able to see through the mirror as they were testing him. It was very bizarre, it was almost like he knew that I was behind the mirror because he kept l ooking toward it and asking for me. It was a very stressful situation which lasted for abo ut 2 hours. They came out and I asked them what they thought because I was really excited and my husband was very excited
133 too. So, basically they said Â“well, what we are goi ng to tell you, you are not going to like.Â” And I said, Â“OK, well, it cannot be any wors e then what we have been dealing with.Â” The doctor said Â“we think that your son is p artly mentally retarded and he also has autism, which is blocking his speech. What you need to do is focus on every day life for him, donÂ’t ever expect him to go to college.Â” Â“That is what they told me.Â” AdrianaÂ’s face begins to crumple and her eyes begin to fill with tears. This time I am unable to hold mine back as well. What devastati ng, crushing words! Adriana wipes a tear from her eye, takes my hand, takes a deep brea th and continues. Â“I looked at the doctor and I said OK, so this is the hope you are giving parents? I am very confused. We come to you for hope. Is this what you are telling parents? Because if it is then the hope you provide is disgu sting and disappointing. We just took 4 hours out of our schedule to come here, to get help and this is what you have to tell me? You know, what a thing to say to a momyour son is never going to go to college. I mean, they did not have to say it like that. So, I said to the doctors, you know what? We are going to prove you wrong. I am going to write a letter and send it to your superiors because you all should not shatter parents like thi s. You are lucky that I am a strong woman and I know that my son is going to be OK. He may not become a doctor, but you know what, he is going to be fine. So, your words? They mean nothing to me.Â” The tears in AdrianaÂ’s eyes continue to fall but he r tone is one of anger. I am so impacted by this revelation that I am having diffic ulty composing myself. I envision Adriana and her husband receiving this news from so -called professionals, dressed in their white coats. How must that have felt? I try t o put myself in her position but I am not a mother so I cannot even begin to fathom what it m ust have been like for her in that
134 room. She came into the office excited to get help for her son, she was hopeful. She leaves crushed, the hope that she once had vanished. How i s that right? How is that OK? It is no wonder there is a disconnect between parents and pr ofessionals in the field. Parents want hope, is it so hard to give it to them? Â“Then, of course, the pediatrician told me that I w as taking it all the wrong way and I said, no, Â“you need to learn to talk nicer to parents.Â” And I felt like I wanted to cry because, I mean, how horrible! So then I asked them Â“what makes you think that he is mentally retarded?Â” They told me that when they ask ed him certain questions he just did not want to answer. I said, Â“no, I saw what you did and you did not even make an effort to connect with him. Maybe if you would have gotten down on the floor and played ball with him and tried to make a connection, then he wo uld have been more receptive to your questions. You know, he is in this room, trapped, w ith four adults, how do you think he feels?Â” And you know what they told me? They said Â“ well, weÂ’re the professionals.Â” I said, Â“yes, I understand that you are supposed to b e professionals but you were not very professional today.Â” I am completely at a loss for words. My throat stin gs with emotion. I am brought back to a time in high school when I struggled with academics. A conference was called with my mother and all of my teachers. We sat in a circle in one of the teacherÂ’s classrooms, one by one, they looked at me and looke d at my mom and told her that I was not cut out for the advanced program, that they had seen no growth, that I should seriously considering going to the JC as college wo uld be a struggle for me. I cried, my mom cried. We left feeling devoid of hope. The Â“pro fessionalsÂ” gave us no suggestions, no strategies that I could use to improve, they sim ply wrote me off, much like the medical
135 professionals did with Cruz. As I proved my Â“profes sionalsÂ” wrong, I am confident that Adriana and Cruz will do the same. Â“I grabbed the kids and my husband and told them t hat I did not need their help anymore. It was really sad. When we left both me an d my husband were just really quiet, we didnÂ’t even say a word to each other. Even today I just get so upset because I knew what my husband was thinking. I knew better and I t old him that Cruz would be fine. The most important thing is that Cruz has our support, we believe in him and that is all that matters. I think that it is the hardest part. A lot of people rely on the medical side and when that goes bad, you donÂ’t know where to go. Tha t is why what I think youÂ’re doing is so amazing. You are going to tell the stories an d people will learn that there is hope. You are just such a blessing and there was a reason we were supposed to meet because what you are doing really is huge.Â” I can feel the lump in my throat begin to rise again. Â“What youÂ’re doing as a mother is huge too. You ma intain hope and continue advocating for your son despite what the profession als told you. They gave you no hope because they view disability through a deficit mode l. You turned around and made your own hope, you challenged them and look how far you have come. What you are doing, as a mother, as an advocate, is truly amazing and I feel blessed to have met you .Â” Â“Well, I am glad to have met someone like you beca use dealing with the doctors, going through that process was definitely the most hurtful thing that I have had to endure; but you know, you live and you learn and you get st ronger. Every time I feel weak, I think of that and I tell myself that I can do this, for Cruz, heÂ’s my baby. I always tell my husband, I may not cure Cruz, but I am going to hea l himthis is going to be the year.Â”
136 The meeting designed to serve as a time to complet e member checks was a bit on the unusual side. I had gone skiing in Tahoe over t he weekend and failed to acknowledge the impact that the glare of the sun off the snow c an have on exposed skin. This resulted in second degree burns to my face which left my ski n red, blistered, and cracked. It was so bad that it was a struggle for me to go out in p ublic because of my feelings of insecurity. I remembered that Adriana worked as an Esthetician and gave her a call to see if she could help me. She scheduled an appointment for me the next day and her day spa. In an effort to kill two birds with one stone, I br ought the completed story with me so she could review it. In between facial exfoliations, pe els, and rinses that she performed on my face she was able to look over the story. Â“Wow, you made me sound so fabulous!Â” she exclaimed. Â“That is because you are fabulous,Â” I told her, Â“I didnÂ’t do anything, it wa s all your words.Â” Â‘I really appreciate this Heather, this story repr esents everything that our family has been through. I really do view our life as a bl essing and I would not change it for anything,Â” she says with conviction. Â“I know you wouldnÂ’t. You were so positive in ever ything you said, it was truly inspiring.Â” Â“Aww! Thank you, I just hope that my story will he lp other parents. Finding hope is the hardest part, especially when it can be shat tered so easily. I want parents to read this and say, OK, if she can find hope, so can I.Â” Adriana and I continue to communicate on a regular basis. She shared CruzÂ’s latest IEP with me and asked if I would consider wo rking one on one with him every week. I agreed and we are currently in the process of negotiating a schedule. Adriana is
137 truly a dynamic person and the participant I feel a s though I connected with the most. I truly admire her positivity and determination and l ook forward to maintaining a continuous relationship with her and her family.
138 Chapter Seven Discussion Overview This study involved examining the lived experience s of three caregivers to children with ASD. All three caregivers were colleg e educated, married, and had combined household incomes of over $100,000 per yea r. Despite these commonalities and association with disability, the caregiver expe riences were diverse in nature. This diversity can be attributed to a number of factors. The difference in the ages of the caregivers is significant: Donna is 56 years old, S andra is 43 year old and Adriana is 36 years old. This generation gap indicates difference s in the social and historical contexts in which participant experiences took place, thus infl uencing the impact of the diagnosis transition on the trajectory of the caregiver lifecourse (Bristol & Schopler, 1994; Gray 2006). Additionally, the ages of the children with ASD were also significantly different, with the oldest child, Tanya, being 25 years older than the youngest child, Cruz. As such, caregivers have differing levels of experience when it comes to raising a child with ASD. While Donna has raised a child with ASD for 31 year s, Adriana has only had 6 years of experience. The diversity in participant experience s can be further explained by factors such as cultural differences, researcher-participan t relationship, and the way in which I re-presented participant experiences in a narrative structure. The aim of the study was to
139 answer the following question: What are the lived e xperiences of diverse caregivers in raising a child with ASD? Subsumed under the larger construct of lived experience were elements such as coping mechanisms, caregiver burde n/satisfaction, experiences with the school system, impact of the diagnosis on the lifecourse of the caregiver, community reaction, and service accessibility. These elements are representative of the themes which emerged across participant stories and are situated within the context of the life-course theory (Elder, 1985) which examines the impact that transitions, such as the diagnosis of a child with ASD, can have on the trajectory of the life course of the caregiver. Closely related to the life-course theory is the Family Adj ustment and Adaptation Response (FAAR) model (Patterson & Garwick, 1994). Specifica lly, the FAAR model includes two phases, adaptation and adjustment. The model mainta ins that the ability of parents to cope with their childÂ’s disability changes over tim e and is impacted by different transitions, or crises, within both the life cycle of the parent and the life-cycle of the child. The accessibility of resources, the social a nd historical context in which the crisis occurs, and the timing of the crisis or transition within the life course also has implications for how well a family is able to adjus t (Seltzer & Greenberg, 1999; Wethington, Cooper & Holmes, 1997). Also related to the life-course theory are KublerRossÂ’ (1969) stages of mourning, which outline the process some caregivers go through in order to attain acceptance of their childÂ’s diag nosis of ASD, and The Resiliency Model of Family Stress, Adjustment, and Adaptation which is frequently used to measure a familyÂ’s ability to adjust and adapt to stressors ( McCubbin & McCubbin, 1989). The following analysis will situate participant stories within the aforementioned bodies of literature.
140 Over the course of this study, I came to the reali zation that storying ones lived experience is a very personal act which requires ex tensive self-reflection. It is the act of self-reflection on the part of the caregivers which contributed to the diversity of the stories. The way in which they storied their lived experience impacted the way in which I, as both a researcher and family member of an ind ividual with ASD, interpreted and represented this experience. The caregivers who chose to share their stories with me communicated their experiences to me in a way which was meaningful to them and I, in turn, created a cohesive narrative whose aim was to capture the emotion associated with these experiences while preserving the authenticity of the experience itself. DonnaÂ’s story conveys the experiences associated w ith raising a daughter with AspergerÂ’s syndrome. She communicates the challenge s and emotions she has experienced while trying to simultaneously raise th ree additional children and longing for a life where she can return to work and some kind o f normalcy. It is only after Tanya is sent to a specialized school for individuals with d isabilities in Vermont that, according to Donna, a sense of peacefulness returned to the home While Donna continues to look after TanyaÂ’s finances and other aspects of her dai ly life despite the fact that Tanya is now in her early thirties she feels as though she h as adapted to the day to day demands. However, she is still burdened when she wonders abo ut what will happen to Tanya when she and Marty are not around to look after her anym ore. While DonnaÂ’s story focuses more on TanyaÂ’s behavi or challenges and the impact raising a child with AspergerÂ’s had on her life, th e focus of SandraÂ’s story is on the trials and tribulations she endured while navigating the e ducational system. She emphasizes the importance of family and acknowledges how much they have supported her with raising
141 Justin. Sandra is a strong advocate for JustinÂ’s in dependence and encourages him to participate in day to day activities with typically developing peers. Although she refers to Justin as Â“special,Â” she does not allow the disabil ity to consume either one of them. Sandra also considers the overall impact of JustinÂ’ s ASD diagnosis on the trajectory of her life-course to be very minimal as she maintains that, career-wise, she is farther today than she thought she would be. AdrianaÂ’s story emphasizes the importance of susta ining hope despite the adversity that is associated with raising a child w ith ASD. She is continuously searching for the next treatment so that she can Â“healÂ” her s on. Like Sandra, Adriana emphasizes the important role that her family plays in her lif e but also references the stigma and guilt she sometimes experiences as a mother to a child wi th ASD. Adriana realizes that staying positive is what is best for her and her family; th is use of positive reframing (Hastings et al., 2005) minimizes the impact of the diagnosis tr ansition on the trajectory of her lifecourse. Despite the diversity of participant stories, comm on themes emerged, many of which relate back to the literature on stress, copi ng, and well-being. Specifically, while all caregivers utilized coping mechanisms to adjust and adapt to the experience of raising a child with ASD, the coping mechanisms employed we re diverse in nature. This diversity impacted the extent to which caregivers w ere able to adapt to the transition of a diagnosis of ASD and the impact of this transition on the trajectory of their life course. Additionally, all caregivers experienced the diffe rent stages of mourning (KublerRoss, 1969). However, the way in which they progres sed through these stages of mourning was inconsistent across participant storie s. Further, not all caregivers
142 progressed through all stages of the mourning proce ss. Specific details of this process for each individual caregiver will be provided within t he individual analyses. Experiences with professionals in the field, commu nity reaction to their childÂ’s disability, availability of services, and challenge s associated with navigating the system were also addressed within participant stories. Whi le all caregivers maintained that the process associated with the diagnosis was tedious i n nature, the caregiversÂ’ interactions with professionals were dissimilar. While DonnaÂ’s s tory focused on more positive interactions with service providers, Sandra and Adr ianaÂ’s emphasis was on the negative aspects of these interactions. Subsequently, this h ad an impact on the rate and frequency at which caregivers accessed services. Two of the t hree caregivers utilized language indicative of feelings of stigma and isolation asso ciated with raising a child with ASD. The following pages will examine these themes, and others, within the context of current literature in the field in order to provide the reader with a deeper understanding of autism and the lived experience of study participan ts. Each participant story is analyzed separately in order to highlight the individuality of the experiences. Excerpts and examples from participant stories serve to connect the larger body of literature to the larger narrative work. Donna. Much of the language in DonnaÂ’s story highlights th e challenges associated with raising a child with a disability w hereas feelings of hope and optimism are sparse. Her story is replete with different sit uations in which Â“meltdownsÂ” occurred and where they were forced to Â“get behind her and c lean up the mess.Â” This indicates that perhaps Donna has not fully adjusted to the transit ion of raising a child with a disability.
143 If situated within the life-course theory, the tran sition of TanyaÂ’s diagnosis impacted Donna in a way that significantly altered the traje ctory of her life course. The life-course theory posits that the social and historical contexts in which the transition occurs which in this case is TanyaÂ’s diagnosis, influences the impact of the transition on the trajectory of the life-course (El der, 1985). When Donna received the initial diagnosis of physical disability she was a mother with a small child who was used to working a full-time job outside of the home. Onc e subsequent diagnoses, such as ADHD and OCD, were received, Donna was a mother of 4 young children with little outside family support. The context in which the tr ansition occurred is one that is not necessarily conducive to adaptation because additio nal stressors were constantly being added (McCubbin & McCubbin, 1989): the birth of fou r children within a six year period, transitioning the children into school, receiving u pdated diagnoses, continuous stress related to TanyaÂ’s inappropriate behavior both in t he home and community. All of these stressors combined would make it difficult for Donn a to fully adjust to the diagnosis transition Further, Tanya did not actually receive an Apserger Â’s diagnosis until her Sophomore year of high school. That means for fifte en years, Donna was living in uncertainty about TanyaÂ’s condition. Tanya was diag nosed with a physical disability, Attention Deficit Hyperactivity Disorder (ADHD), an d Obsessive Compulsive Disorder (OCD), however, none of these diagnoses fully expla ined the characteristics and behaviors Tanya exhibited. Once they finally receiv ed a diagnosis, Donna indicated that they felt Â“relievedÂ” to finally find a place where Tanya Â“fit.Â” However, this relief was coupled with fear as they did not receive much hope for where Tanya would be in the
144 future. This is also considered a transition within DonnaÂ’s life course, however, the lack of hope associated with this transition made it difficult to adapt and accept (Patterson & Garwick, 1994) the new AspergerÂ’s diagnosis. Right after the diagnosis, another transition took place, throwing the balance off yet again. The decision was made to send Tanya away for school. The transition of Tanya leav ing home for the first time evoked feelings of guilt and shame, Â“I was afraid of what people would think if I just up and sent her away.Â” These feelings could also inhibit DonnaÂ’ s ability to adjust. This lack of adjustment could thus influence the way in which Do nna perceives herself as a mother and negatively impact her feelings of self-efficacy (Hastings & Brown, 2002). DonnaÂ’s coping styles emphasize the use of interna l strategies with her husband serving as her main form of support. Very few exter nal coping strategies were observed as Donna did not actively seek out spiritual suppor t nor support from social networks. In a sense, she engaged in what can somewhat be charac terized as isolationist behavior. This is consistent with literature on ASD which indicate s that parents often times engage in isolationist behavior in order to avoid social situ ations where challenging behaviors, on the part of the child, may manifest themselves (Aut ism Society of America, 2008). In addition to feelings of isolation, caregivers to ch ildren with disabilities often feel stigmatized because of their childÂ’s disability (Gr een, 2003). Donna felt stigmatized by the community because of TanyaÂ’s inappropriate beha viors and refrained from leaving the house: Â“I felt trapped.Â” This supports Goffman Â’s (1963) theory of courtesy stigma where a person acquires a stigma based on their clo se association with another person with a stigma, which in this case, is Tanya.
145 DonnaÂ’s coping strategies can be further character ized according to the dimensions set forth by Hastings et al.,(2005). Spe cifically, Donna engages in active avoidance coping (Hastings) as she frequently blame s herself for her inadequate parenting skills. Caregivers utilizing active avoid ance strategies such as self-blame, use of drugs/alcohol to cope, giving up or avoiding the stressor all together, were found to display higher levels of stress than caregivers who employed more positive coping strategies. This is also consistent with literature indicating that Caucasian caregivers rely more heavily on passive appraisal, or avoidance of problems, as means of coping (Twoy et al., 2007). Kubler-Ross (1969) identified five stage of mourni ng which parents of children with disabilities go through after receiving a diag nosis: 1) Denial 2) Bargaining 3) Anger 4) Depression 5) Acceptance. However, it is importa nt to note that not all parents will progress through the stages at the same rate; some stages may be skipped altogether. DonnaÂ’s story focused on the stages of anger and de pression. Particularly in the second interview, she expressed feelings of inadequacy as a parent and feelings of depression. Â“Looking back I think I may have been a little depr essed during those years because I always felt that despite everything I did, I was a failure.Â” Having family support is a coping mechanism that has been found to be effectiv e in dealing with day to day stressors (Gray, 2006). However, Donna reported that most of her family lived in Michigan and those who did live nearby did not understand how to take care of Tanya. The burden was left upon her and her alone. This lack of family su pport could explain why she experienced feels of anger and depression.
146 Additionally, research indicates that caregiver se lf-efficacy has been shown to contribute to levels of anxiety and depression (Has tings & Brown, 2002). Donna refers to herself as a Â“failureÂ” indicating that her level of self-efficacy is relatively low, thus potentially contributing to the depression she feel s. The stress that Tanya placed on her was so intense that she felt as if she were Â“neglec ting her other children.Â” While Donna has learned to live with and cope with TanyaÂ’s disa bility, I question whether or not she has truly achieved acceptance. I am left with the f eeling that she is still somewhat resentful as her story focuses primarily of the cha llenges associated with raising a child with ASD and ends without much of a resolution. How ever, one of the conditions of acceptance is that the caregiver is able to attain a balance between encouraging independence and showing love (Kubler-Ross, 1969). I believe Donna has mastered this. Tanya lives alone, drives a car and holds a job, of which are indicative of encouraging independence. Donna shows love in her own way, taki ng care of prescriptions, managing TanyaÂ’s financials, and generally being there for h er. I think sometimes she is just overwhelmed with the responsibility and may find it difficult to develop and maintain the same kind of emotional relationships with Tanya tha t she has with Cameron and Julie. However, this lack of emotionality in no way indica tes a lack of love. Â“Tanya is a great kid, she has her little idiosyncrasies, but we love her anyway.Â” Perhaps the feelings of resentment and anger that Donna harbors deep inside influence the way in which she is able to connect with Tanya on a more emotional leve l. The act of telling oneÂ’s story has been described as part of the coping process as it allows caregivers to positively reframe the experie nce associated with the diagnosis of ASD, thus contributing to lower levels of depressio n and improved well-being (Gray,
147 2006). While DonnaÂ’s story is not necessarily indic ative of positive reframing, her final email to me illustrated that perhaps she is beginni ng to focus on more positive aspects of the experience. She indicated that she Â“thoroughly enjoyedÂ” talking about her experience and that the act of telling her story gave her a Â“n ewfound appreciationÂ” for what she has been through. Sandra. Sandra maintained an air of strength and composure throughout the interview process which supports research documenti ng increased resilience and acceptance among families considered to be ethnic m inorities (Harry, 2002). This resilience could be attributed to her use of both i nternal and external coping strategies. Specifically, Sandra relied heavily on her family f or support and acknowledged the importance of having a life outside of her role as a caregiver both of which are subsumed under the dimension of problem-focused coping strat egies (Hastings et al., 2005). SandraÂ’s reliance on family support influenced her ability to adjust to the transition of having a child diagnosed with ASD. The transition of the diagnosis within SandraÂ’s li fe-course only minimally impacted the overall trajectory of her life-course. She indicated that despite bein g faced with the challenge of raising a child with ASD, she feels as though she is in the place she would have been if Justin had not been born with a disability, in fact, she feels as though she is Â“much fartherÂ” than she thought she would be While there was a period of adjustment following t he transition, SandraÂ’s utilized a repertoire of coping and problem-solving strategi es in order to move into a phase of adaptation. In her story, she acknowledged that one of the most important things for her to realize was that she needed help. Her family was there to assist with the care giving
148 aspects, but the burden of maintaining the home was one which weighed heavily on her. The number of demands placed on a family (stressors strains, transitions) has a negative impact on the caregiverÂ’s ability to adapt and adju st (McCubbin, 1993). Sandra acknowledged the potential impact of these demands and sought help in order to alleviate some of the burden, thus facilitating the process o f adaptation and adjustment (McCubbin & McCubbin, 1989). JustinÂ’s school experience proved to be frustrati ng for Sandra. She was constantly met with adversity from the teachers and administra tors over the course of JustinÂ’s schooling. The constant transitions associated with moving from school to school, classroom to classroom was difficult for both of th em. Sandra was left feeling as though no one wanted Justin in their school or classroom b ecause of his disability. Sandra openly admitted that she was not the most savvy at advocat ing for Justin because she was unaware of many of the services that were available to him. This is consistent with literature addressing service accessibility in that ethnic minorities typically access services at a much lower rate than their Caucasian counterparts (Balcazar, Keys, & Balcazar, 2001). Further, it is suggested that a la ck of awareness of available services accounts for the discrepancy in the rate at which t hese services are accessed (Harry, 2002). Much of what she learned fell into her lap through conversations with other parents, teachers, and social workers. School was Â“ a journey, learning all of the ins and outs,Â” and was a significant stressor for Sandra. T alking about her and JustinÂ’s experiences in school is what evoked the most emoti on from Sandra. However once she was able to learn the Â“ins and outs,Â” she was able to adjust and adapt to future school related transitions in a more effective manner.
149 Denial was the first step in the process Sandra wen t through in learning to accept and live with the transition of an ASD diagnosis. She reported feeling Â“numbÂ”, w hich, according to Seligman & Darling (1997), is indicati ve of denial. Sandra also reports that many of her family members experienced denial with the initial diagnosis, including her husband and father. During the denial phase, Sandra was able to gather the inner strength necessary to acknowledge, accept, and manage the di agnosis. The story she tells does not indicate a progression through the stages of bargai ning, anger, or depression before moving into the stage of acceptance. SandraÂ’s story indicates that she has achieved full acceptance based on criteria set forth by Hornby (1 994). She is able to discuss JustinÂ’s challenges with relative ease, effectively collabor ate with professionals to identify realistic goals and objectives for her son, and aba ndon overprotective behavior towards Justin. He is permitted to drive the family truck w hen they go out together and he also has the freedom to make plans with his friends outside of the home, away from her supervision. Sandra is resilient and it is this resiliency which has facilitated the successful adaptation to and acceptance (McCubbin & McCubbin, 1993) of her role as a caregiver to a child with ASD. The act of storying her lived exp erience, like Donna, impacted her in a way that allowed her to positively reframe her expe rience. This reframing convinced her that she has succeeded as a parent and is giving Ju stin the best life she can. Â“I feel like as a parent, I have done good.Â” Adriana. The language Adriana uses when telling her story is very positive. She continuously refers to her son as a Â“blessingÂ” and that she feels Â“blessedÂ” to have been met with the experience of raising a child with ASD These references to spiritual support
150 are consistent with literature addressing coping me chanisms. Specifically, non-English speakers are more likely to rely on religious copin g mechanisms than their Englishspeaking counterparts (Twoy et al., 2007). While Ad riana does speak English, it is not her first language. Further, while this does not qu alify her solely as a non-English speaker, it is indicative of her linguistic diversi ty, which has been shown to play a role in coping mechanisms employed. The notion of hope is omnipresent and her quest to Â“healÂ” her son never wavers. Adriana relentlessly seeks out alternative forms of medicine to facilitate the healing process in her sonÂ’s body. Research suggests that L atino caregivers of children with ASD seek out non-traditional treatment options more so than their non-Latino counterparts (Levy et al., 2003). This is interesting as Adriana posits that Mexican families Â“just believe in going to the doctor.Â” Further, Â“the vita mins and outside services I have gotten for Cruz would not fly if I had a Mexican husband.Â” However, only one such study (Levy et al.) indicated this preference towards non tradi tional methods, thus indicating a need for additional research in this area. Adriana is the only caregiver in the study to spec ulate on the cause of CruzÂ’s disability. She believes that the MMR vaccine that Cruz received when he was a little over 2 years of age contributed to the onset of aut ism. Research in this area maintains that mercury, which was present in vaccines until 2001, has been speculated to contribute to the presence of autism (Bernard et al., 2001; Rimla nd, 2000; Shaw, 2002). However, research is insufficient to conclusively link the m ercury present in the MMR vaccine to the onset of autism (Simpson et al., 2005). In 1999 the Public Health Service agencies agreed that, as a precautionary measure, thimerosal a mercury-containing preservative,
151 should be reduced or removed from childhood vaccine s (CDC, 2008). However, as Cruz only received his vaccines 4 years ago in 2004, the mercury level present in the vaccines he was administered would have been minimal. Howeve r, more recent reports have speculated that perhaps thimerasol was not the sole culprit of the alleged toxicity. Aluminum hydroxide is another compound which is pre sent in childhood vaccines; studies indicate that aluminum toxicity can lead to neurological damage and that there is a significant relationship between aluminum and mer cury in vaccines and neurodevelopmental delays (Freedom of Information A ct, 2000). However, it is important to note that this conclusion was based on a transcript of a closed meeting called to discuss results from a study involving CDC and f our HMOs which examined data from Vaccine Safety Datalink. No subsequent studies have been conducted which link mercury and aluminum levels to the onset of autism. This un certainty continues to haunt Adriana as she reports feelings of guilt for having possibl y contributed to her sonÂ’s diagnosis. Adriana utilizes a combination of internal and ext ernal coping strategies. Specifically, problem-focused coping and positive c oping mechanisms are the most frequently used. Problem-focused strategies involve seeking social and emotional support from others as well as identifying potential strate gies to improve outcomes (Hastings et al., 2005). In AdrianaÂ’s case, she references the i ntense support she receives from both her husband and her in-laws, indicating that they a re very Â“close-knit.Â” She also continuously seeks out new treatments and strategie s, such as the use of vitamin supplements and the hyperbaric oxygen chamber, in o rder to improve her sonÂ’s outcomes. Positive coping strategies involve the use of posi tive reframing (Hastings et al.,
152 2005). Adriana Â“believesÂ” in her son and acknowledg es that Â“he is going to be OK,Â” despite the report she received from the medical pr ofessionals. Research indicates that positive reframing of stressful life events, such a s the transition of the diagnosis of a child with ASD, is related to lower levels of depression in caregivers (Gray, 2006). Adriana does not use language that implies feelings of burd en or depression. Instead, she feels as though Â“He [Cruz] is just such a blessing to us. Yo u know, God does not give us more than we can handle.Â” This reference indicates Adria naÂ’s faith in God and utilization of religion as a coping mechanism. She also makes exte nsive references to the important role that her family plays in her life and describe s her husband as her Â“backbone.Â” Research on Latino caregivers, and ethnic minoritie s, with a child with a disability indicates a high level of need for both family (Ski nner et al., 1999) as well as an increased level of resilience (Harry, 2002). Like Sandra, Adriana does not see the transition of a diagnosis of a child with ASD as impacting the overall trajectory of her life course. In looking at the social contex t in which the diagnosis occurred, Adriana was happil y married, secure in her career and enjoying her role as a mother. Once the diagnosis w as received, Adriana was able to adapt and adjust to the transition because of the support systems that were in place i n her life. Specifically, AdrianaÂ’s family typology, whic h exudes cohesion, has a positive relationship with the familyÂ’s ability to adapt to the constant transitions associated with raising a child with a disability (McCubbin, 1993). The flexibility of her career allowed her to both meet the needs of Cruz while maintainin g a professional presence within the work place. AdrianaÂ’s consistent use of positive an d problem-solving coping mechanisms
153 allowed her minimize the impact of the day to day s tressors (Patterson, 2000) associated with raising a child with ASD, thus facilitating he r successful adjustment to her role as a caregiver. I found evidence of progression through all of Kub ler-RossÂ’ (1969) stages of mourning. Although Adriana experienced denial, it w as only for a short time. She did not want to talk about CruzÂ’s disability because it hur t her too much, and she did not want to portray her son in a negative light. However, once she came to the realization that people were Â“more receptiveÂ” when she talked about his dis ability, she began to open up, allowing her to move through the phase of denial. Adriana is very focused on research new treatment methods in order to Â“healÂ” her son. Part of the bargaining phase involves parents seeking out all possible therapeutic options in exchange for an improvement in their chi ldÂ’s condition (Kubler-Ross, 1969). While Adriana has all but abandoned traditional med icine as a means of treatment for her son, she continues to seek alternative methods whic h could be indicative of her continued progression through the bargaining phase. Only at o ne point in time did I find evidence of anger in AdrianaÂ’s story. The medical professionals had just told her that she should not expect her son to go to college. She fought back wi th anger and emotion Â“We are going to prove you wrong.Â” Â“Your words mean nothing to me .Â” It is this anger that motivated Adriana to seek out alternative forms of medicine t hat would heal her son and improve his outcomes. Despite the fact that Adriana has acc epted her sonÂ’s disability, it is evident that she intermittently experiences feelings of dep ression and blame. As a mother, she indicates that she often blames herself and questio ns her food choices during pregnancy as well as those choices she made in regards to fee ding her son once he was born. She
154 acknowledges the genetic basis of autism and commun icates that both she and her husband are trying to Â“put the pieces togetherÂ” in an effort to find out how their son developed autism. Despite the fact that Adriana feels guilt over her sonÂ’s condition, she does not allow it to paralyze her. Instead, she focuses her energy on positive thinking and finding hope. Her positive appraisal of the situation has a positive impact on her ability to adjust and adapt (McCubbin, 1993) to her role as a caregiv er to a child with ASD. Â“You live and you learn and you get stronger. Every time I feel weak, I think of that and I tell myself that I can do this, for Cruz heÂ’s my baby. I always tell my husband, I may not cure Cruz, but I am going to hea l himthis is going to be the year.Â” Bringing it Together The preceding analyses highlight the experiences o f three caregivers, from diverse backgrounds, within the context of a larger body of literature. While common themes such as the impact of the diagnosis on the life-cou rse of the caregiver, the use of coping mechanisms, progression through stages of mourning, adaptation and adjustment, and the process associated with navigating Â“the system,Â” we re identified across participant stories, the way in which these themes manifested t hemselves within the participant stories is individualistic. I feel it is important to discuss common threads that emerged across participant stories as well as address some concerns associated with the study. Research indicates that culturally diverse familie s of children with autism have been under researched (Zhang & Bennett, 2002). Subs equently, the intersection of race, family coping mechanisms, and autism has also been excluded (Dyches et al., 2004). This study initiated a dialogue with caregivers of child ren with ASD who were culturally
155 diverse while simultaneously exploring constructs s uch as coping mechanisms and caregiver burden. This dialogue provides the founda tion on which to build a future research agenda which will continue to explore this intersection, but on a larger scale and across additional ethnic groups. Research indicates that ASD is equally diagnosed a cross cultures and socioeconomic status (U.S. Department of Education, 2002 ). While the families in this study are culturally diverse, they all come from relative ly affluent backgrounds. Therefore, it is important to note that these stories are not indica tive of the larger population of caregivers of children with ASD. Further, even thou gh study participants identified with certain cultural groups, their stories are not repr esentative of the larger cultural group with which they identify; it is their unique and in dividualized experience. This indicates the need for future research to explore not only ac ross additional ethnic groups but also socioeconomic levels. Current literature on the topic of autism and other disabilities identifies the need to address the family component, cultural and lingu istic diversity, and service accessibility (Dyches, et al., 2004; Harry, 2008; Z ionts et al., 2003; Zionts & Zionts, 2003). The county in which the study was conducted is relatively affluent which made locating caregivers with diverse socio-economic sta tuses difficult. Further, the majority of caregivers of children with ASD, who self-identi fy as Hispanic, are not fluent speakers of English. Therefore, there are additional issues related to linguistic diversity that have not been addressed in this study. Specifically, lan guage differences have been identified as a barrier to successful collaboration between pa rents and professionals (Dunlap, 1999; Turnbull et al., 2006; Yap & Enoki, 1994). This is problematic in that families of children
156 with ASD are being silenced because of their lingui stic association. Subsequently, service delivery models for community agencies are unable t o provide services which are accessible to families from linguistically diverse backgrounds (Lynch & Hanson, 1998; Thomas et al., 2007). However, the acknowledgement of these limitations inspires me to set forth a future research agenda which seeks out the stories of those individuals who have been left out of the current study. Specifically, subsequent research should examine the experiences of caregivers who identify as Asian, Am erican-Indian, and multiracial. The experiences of caregivers whose income levels are a t the poverty line should also be sought out as I anticipate that their concerns woul d be very different from the caregivers in this study who had the resources to seek out and obtain supplemental services for their children. Caregivers who are non-fluent in English also have stories to tell and they should have the opportunity to do so despite their linguistic diversity. Future studies should recruit individuals from linguistically dive rse backgrounds with the assistance of translators. In addition to the aforementioned limitations of t he study, I felt it important to outline several commonalities which emerged across participant stories and the implications of these commonalities for professiona ls in the field. Blame, frustration, and a lack of hope were concep ts which consistently emerged across participant stories. This is problematic in a sense that in order to obtain services for their child, caregivers are forced to deal with a process that is tedious and frustrating. Further, once the diagnosis was received, feelings of hope were reportedly shattered by professionals in the field. It is evident that pare nts already feel some sort of guilt over
157 their role in the manifestation of the disability a nd it is important that this guilt not be compounded with subsequent negative experiences. Su ggestions for future research include an examination of the system and the proces s associated with obtaining a diagnosis. This is a difficult enough time for pare nts, our job as professionals, is to make it as painless as possible and reflecting on what w orks and what does not work with the current system is an important place to start. In o rder to do this effectively, future research should be conducted across ethnicities, so cioeconomic statuses, family structures, and linguistic associations. Despite these feelings of blame and frustration, t wo of the three caregivers consistently referred to the experience of raising a child with ASD as positive. Further, all caregivers reported that the act of telling their s tory had a positive impact on them. This is consistent with literature indicating that excha nging narratives facilitates the coping process and a change in perception for parents (Huw s et al., 2001). This has important implications for the field in that it suggests a ne ed for further exploration of caregiver experiences within a narrative framework (Fleischma n, 2004). Developing and ethic of care (Gilligan, 1982; Nodd ings, 1984) within medical professionals is another essential element. An ethi c of care evolves out of oneÂ’s interconnectedness with others. It emphasizes the i mportance of fostering the development of care through interactions with other s and maintaining interest and concern in othersÂ’ well-being. Interest and concern are communicated through genuine attentiveness and compassion towards others (Keller 1996). This has implications for professionals in the field in that the two of the t hree caregivers in this study experienced a lack of compassion, attentiveness, and overall conc ern for their child following the
158 diagnosis of ASD. Parents come to medical professio nals for hope, for direction. It is important that we provide them with the hope they s eek while simultaneously providing them with the realities of the diagnosis. Additiona lly, we should encourage parents to hang onto that hope, no matter how difficult the si tuation becomes. Educating parents about ASD as a disability, sharing success stories and focusing on the positive will also help parents understand that they are not alone and that they are not to blame for their childÂ’s disability. Researcher Reactions DonnaÂ’s story is the most personal to me. My initia l reactions to her story are skewed by my desire to protect her and the rest of the family. I was torn between my desire to talk about how much I admire her for her vulnerability and strength, while on the other hand, I wanted to further examine her use of language and the overall tone in which the story was told. I also wanted to remain t rue to who I am as a researcher but I also felt the need to protect her from any critical analysis that may portray her in a negative light. In the end, I believe I was able to achieve a balance between family member and researcher. This negotiation between my two personas was difficult for me because of the past relationship that we shared. It is important to note that Donna confided in me some of her inner most feelings beca use of our past relationship; it is this relationship which facilitated the level of disclos ure with which I was provided. Had the researcher been a stranger, as I was to the remaini ng two participants, it is possible that her story would have taken on a different, perhaps more critical, tone. In realizing this discrepancy, I became more aware of the judgment I was placing on the caregiver stories. While my goal at the outs et of the study was to listen to the
159 caregivers while reserving judgment, I found that t his task was next to impossible. My previous experience as an educator influenced the w ay in which I responded to the participant stories as did my experiences with my o wn family member who is diagnosed with ASD. My interpretations had the power to empha size one aspect of a story while deemphasizing another. The negotiation between narr ative and historical truth required me to immerse myself within the interview transcrip ts through repeated readings so that I was able to incorporate elements of the transcripti ons which contributed to the ebb and flow of the story while, at the same time, preservi ng the authenticity of the participantsÂ’ lived experience. I feel as though I formed the strongest connection with Adriana. She was open with me from the very beginning. She exuded strengt h while, at the same time, showing vulnerability and emotionality. Another reason I fe lt such a strong connection to Adriana is because, despite our differing cultural backgrou nds, we are similar in many respects. We are the closest in age, being only eight years a part. Our outward style is similar, as are some of our mannerisms and interests outside th e home. I felt as comfortable with her as I feel with some of my best girlfriends. The bon d between Adriana and I has grown since the interviews and I am confident that we wil l maintain a friendship long after. This relationship influenced the way in which I responde d to her experiences. I had an overwhelming desire to believe her story and legiti mize her actions, much like the desire I had to protect Donna from an overly critical eye. The relationship between Sandra and myself was slo wer to progress than those relationships with Donna and Adriana. While I feel as though I was able to connect with her on an emotional level, I was continuously met w ith the feeling that she was holding
160 back from me. I cannot fault her for this as I was a complete stranger to her when we first met. I question whether I should have done more to establish rapport with Sandra prior to the main interview. I feel as though my response s to SandraÂ’s experiences, as indicated by the italicized problematics in the results secti on, were less emotionally involved than were my responses to Adriana and Donna. It was diff icult for me to connect with Sandra on that level because of her strong exterior. Upon meeting her, I was a bit uneasy and often pondered how I might begin breaking down her walls. I think that my uneasiness prevented me from connecting with Sandra on a deepe r level. This is unsettling to me because I feel as though I did not do justice to Sa ndraÂ’s experience. The richness that is present in the other two caregiver stories far outw eighs that of SandraÂ’s story. I am disappointed in myself for failing to make a deeper connection with her. However, in future studies, I believe it will be important for me to allocate more time for rapport building sessions. Developing relationships with ca regivers is not something that can be done overnight and some caregivers will be less wil ling to open up than others. Individualizing interview time lines would be an ef fective way to address this limitation. This study made me aware of the diversity in the ex periences of three caregivers to ASD. All the caregivers in this study indicated that having someone listen to them and acknowledge their experience was one of the greates t gifts they could have been given. Showing parents that you are interested in hearing what they have to say opens doors that may have remained otherwise closed. I learned the importance of the family story and the impact it can have on the professional stor y. In order to fully understand where parents and family members of children with autism are coming from, we must negotiate the way in which our professional story influences our interpretation of the family story.
161 As professionals, we are outsiders as we are not pr ivy to the lived experiences of the family. When families make the decision to share th is lived experience with us, it is imperative that we listen without making judgment. In a study conducted by BlueBanning, Summers, Frankland, Nelson, & Beegle (2004 ), parents expressed their desire for professionals to Â“listen carefully and nonjudgm entally to what the other has to sayÂ” (p. 172). Â“The first thing is to listen to us ... because we know our kids better than anybody.... I think some of these people have preco nceived notions about everything.... So if I tried to say, to tell them [ professionals] something, it'd be LISTEN TO MEÂ” (Blue-Banning, et al., 2004, p. 172). It is crucial that we, as researchers, remember tha t it is our responsibility to provide a Â“voice for the various stakeholders-by listening to their voices and considering their voices within the full context of their experiences" (Sandall, Smith, McLean, and Ramsey, 2002, p. 135). I have learned the importance of withholding judgme nt about the lived experiences of others. Creating self-fulfilling ass umptions is not a component of effective communication. Mutual respect, trust, and parent em powerment are essential components of collaborative relationships and effec tive communication between parents and professionals (Blue-Banning, et al., 2004). Ta king the time to validate interpretations and honor otherÂ’s lived experience is essential in future communicative interactions. This newfound knowledge will guide my future research with diverse families and their lived experiences in raising a c hild with autism. Epilogue This experience has taught me some very important lessons in both my personal
162 and professional life. First and foremost, I have r egained the self-confidence that left me that day in first grade. I realized that I am capab le, I am intelligent, and I should not feel ashamed of my past mistakes or perceived Â“failures. Â” I have also re-learned the importance of listening, honoring and respecting th e stories and experiences of others. My interactions with the families in this study he lped me to understand only a small piece of what it is like to raise a child wit h ASD. I am humbled by this experience as I realized that I do not really Â“knowÂ” as much a s I had originally presumed to know. This new found knowledge will guide my future inter actions with not only families to children with disabilities but to all individuals w ith whom I come in contact. Legitimizing oneÂ’s experience is an important part of truly unde rstanding and empowering both the self and the other. We are not put here to judge no r criticize the experiences of those with whom we interact. The self-reflection in which I engaged throughout this study allowed me to reorganize my previous experiences as student, teac her, and researcher in a way that no longer confines me to a predetermined set of qualif ications, but rather serves as a foundation on which to build future experiences. I have come out of this process with a renewed passion for my career and desire to learn m ore about the experiences of families faced with the challenge of raising a child with AS D. It is my hope that by reading the stories of the caregivers in this study, other fami ly members will be inspired to tell their story, or at least find a renewed sense of hope. I hope that researchers who read this study will be inspired to seek out the stories of t hose individuals who may have been marginalized not only by their association with dis ability but by other perceived constraints. I know that my research agenda include s expanding upon this study by
163 seeking out the stories of fathers, grandparents, s iblings, and individuals with disabilities. Further, I hope to seek out the stori es of additional ethnicities, socioeconomic statuses, and family structures that are not represented within this study. Stories are powerful entities which have the potent ial to facilitate social change by increasing awareness and understanding. Communicati ng the implications of this and future studies to service providers is also one of my priorities. I successfully defended this dissertation on June 11th, 2009, a day that will live in my memory for the rest of my life. This process has changed me in a way that goes beyond future research agendas and changing perspec tives on my style of interaction. I have become more self-assured, more confident, more determined. I feel as though my past negative experiences with teachers and the sch ool system are insignificant in comparison to the pride and passion I feel at this very moment. Thank you to the people in my life, family, friends, and teachers, who neve r gave up on me, who pushed me to be my very best, and whose encouragement and love I wi ll never forget. This accomplishment is as much yours as it is mine.
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191 Appendix A: Demographic Information Primary caregivers will be asked to complete the fo llowing demographic information sheet: What is your marital status? Single Married Divorced Widowed What is your race? African-American Caucasian Hispanic/Latino Other What is your age range? 18-25 26-30 31-35 36-40 41-45 46-50 51-55 56-60 61-65 Over 65 What is your yearly household income? Under $25,000 $25,001-$35,000 $35,001-$45,000 $45,001-$55,000 $55,001-$65,000 $65,001-$75,000 $75,001-$85,000 $85,001-$95,000 $95,001-$100,000 Over $100,000
192 Family Structure Both parents living in the home Single parent (divorced) Single parent (widowed) Single parent (never married) Extended family living in the home Education level Some high school High school graduate Some college College graduate Advanced degree (MasterÂ’s, Specialist, Doctorate) Working Status Full-time job Part-time job Not employed at this time Occupation (Please provide below) ___________________________________
193 Appendix B: Interview Protocol Approximately three interviews will be conducted wi th each of the study participants. The first interview will serve as a rapport buildin g discussion in an effort to establish a foundation of trust between the interviewer and res pondents. Further, the concept of lived experience will be addressed along with an explanat ion of interactive interviewing. The second interview will involve documenting the p rimary caregiversÂ’ lived experience with raising a child with ASD. The interview protoc ol will serve as a guide for this semistructured interview The third and final interview will allow time for m ember checks and negotiation of interviewer interpretation. If any inaccuracies ari se, the researcher and study participants will negotiate the perceived inaccuracy so that bot h parties feel they are represented in a manner consistent with their lived experience. Interview Protocol 1. Caregiver feelings about diagnosis and the impact o f diagnosis on their life-course 2. Feelings about caregiver burden and/or caregiver sa tisfaction experienced in raising their child with ASD 3. Coping mechanisms caregivers have employed 4. Their perception of the impact of living with a chi ld with ASD on other family members (relationships among family members, intera ctions) 5. Knowledge, availability, and accessibility of servi ces for the family (are there barriers, if so, what are they?) 6. Experience within the school system 7. Experience and interactions within their community 8. Their goals for their child
194 Appendix C: Recruitment Flyer ASD Research Opportunity Would you like to participate in a research study a ddressing your experience raising a child with ASD? PURPOSE: The current research study seeks to examine the ex perience of primary caregivers in raising a child with ASD. REQUIREMENTS: Three (3) interviews with the researcher (1-3 hours in length) Permission to audio tape the interviews Primary caregivers to a child with ASD African-American, Caucasian, or Hispanic decent NATURE OF THE INTERVIEWS: The first interview will serve as an opportunity to get to know you and gather preliminary demographic information. During the second intervie w, you will be asked to tell your story about what is has been like raising a child w ith ASD. The researcher will ask questions about your experiences as well. The third interview will serve as an opportunity for you to review the interview transcripts and res earcher interpretations. Any inconsistencies can be addressed at this time. CONTACT INFORMATION If you are interested in participating in this stud y please provide your contact information below and the research will get in touch with you t o answer any questions and provide more information about the study. ---------------------------------------------------------------------------------------------------------NAME_______________________________________________ ________ PHONE #____________________________________________ _________ BEST TIME TO CALL__________________________________ ________ EMAIL (if available)_______________________________ _____________
195 About the Author Heather Brace is currently a faculty member in the Department of Educational Leadership and Special Education at Sonoma State Un iversity in Rohnert Park, CA. While completing her doctoral coursework at the Uni versity of South Florida she had the opportunity to serve as Project Coordinator for a U .S. Department of Education Transition to Teaching grant. She also worked as an elementary school teacher of students with special needs in Florida for 4 years. She earned her MasterÂ’s degree in Special Education in 2003 from the University of Fl orida. Her research interests include lived experiences of caregivers to children with ASD, teacher candidate self-efficacy, and effective components of teacher education programs. She currently resides in Northern California with h er 2 Chihuahuas, Bailey and Brody, and her Papillion, Brady.