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Giving voice to parents of young children with challenging behavior
h [electronic resource] /
by Jonathan Worcester.
[Tampa, Fla.] :
b University of South Florida,
Thesis (Ph.D.)--University of South Florida, 2005.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
System requirements: World Wide Web browser and PDF reader.
Mode of access: World Wide Web.
Title from PDF of title page.
Document formatted into pages; contains 229 pages.
ABSTRACT: In recent years, there has been increased interest in the science of child development, particularly relative to early childhood (i.e., birth to 5 years) and children with challenging behavior. A broad interest in brain-behavior relationships and prevention services for young children has led to a renewed interest in the developmental significance of early life experiences (National Research Council and Institute of Medicine, 2000). Armed with an increasingly large body of neuroscience research, researchers have begun to examine the efficacy of prevention services and supports for young children and families, particularly those with challenging behavior (i.e., behaviors that interfere with optimal learning or engagement in prosocial interactions with peers and adults; Powell, Fixsen, and Dunlap, 2003).In light of such a research agenda, the voices of parents are often left unheard, despite widespread acknowledgment that parents are the childs first and most important teacher (Ferrell, 1985). A sizable body of interdisciplinary research has evolved in support of a system of care designed to both improve childrens growth and development and to prevent occurrences of challenging behavior in young children. While qualitative studies in early intervention and early childhood special education are presently lacking (Sandall, Smith, McLean, and Ramsey, 2002), local efforts have begun to investigate the impact of services for young children with special needs in Hillsborough County, Florida (Raffaele Mendez and Hess, 2003). However, detailed reports of parent experiences were not possible, nor did the study focus on challenging behavior.
Adviser: Harold Keller, Ph.D.
Co-adviser: Linda Raffaele Mendez, Ph.D.
System of care.
x Interdisciplinary Education
t USF Electronic Theses and Dissertations.
Giving Voice To Parents Of Young Ch ildren With Challenging Behavior by Jonathan Worcester A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Psychological and Social Foundations College of Education University of South Florida Co-Major Professor: Harold Keller, Ph.D. Co-Major Professor: Linda Raffaele Mendez, Ph.D. Kathleen Armstrong, Ph.D. Teresa Nesman, Ph.D. Date of Approval: March 1, 2005 Keywords: families, ecological, system of care, early childhood, qualitative Copyright 2005 Jonathan Worcester
i Table of Contents Abstract v Chapter One. Introduction 1 Building a Rationale for Earl y Intervention Services 2 Bronfenbrenners Ecological Model of Child Development 5 Purpose 8 Research Questions 10 Definitions 11 Challenging behavior 11 IDEA Part-C: The Infants and Toddlers With Disabilities Program 11 Young Children 12 Chapter Two. Literature Review 13 The Ecological Theoretical Framework 13 Prevalence and Significance of Children Birth to Three With Challenging Behavior 15 Medication and the Long-Term Cour se of Challenging Behavior 20 National Systems of Care for Ch ildren Birth to Three With Challenging Behavior 22 The Social Security Act 24 Medicaid 24 Rationale and Purpose. 24 The Strengths of Medicaid. 25 The Weaknesses of Medicaid. 26 The Individuals with Disabili ties Education Act (IDEA) 27 Part C: The Early Intervention Program 27 Rationale and Purpose. 27 The Role of Early Inte rvention Services 31 Serving the Nationa l Population of Children Birth to Three 33 Strengths of the Early Intervention Model 34 Weaknesses of the Early Intervention Model 37 Local Level Systems of Care for Children Birth to Three With Challenging Behavior 39 Parent Perceptions and Experiences Associated With Their Childs Disability 42 The Concepts of Disability and Stigma 42
ii The Experiences and Perceptions of Parents of Young Children With Disabilities 45 Promoting Parent Involveme nt and Collaboration 49 Summary 52 Qualitative Research Methods 54 Chapter Three. Methodology 59 Purpose 59 Theoretical Framework 60 Measurement 60 Procedure 61 Step 1: Participant Recruitment and Sampling 61 Written Contact 63 Telephone Contact 63 Participant Stipends 65 Step 2: Bracketing Interview 66 Step 3: Interview Data Collection 67 Consent 67 Interviews 67 Step 4: Credibility 69 Pilot study 69 Saturation 71 Step 5: Data Analysis 72 Chapter Four. Results 75 Participant Demographic Information 75 Participant Descriptions 77 Participant One: Bri 77 Participant Two: Grace 79 Participant Three: Darnell 81 Participant Four: DJ 83 Participant Five: Andrew 84 Participant Six: Lenny 87 Participant Seven: Tank 89 Research Questions 90 Question One: What are the experiences of parents obtaining Services for young children with challenging behavior living in Hillsborough County, Florida? 90 Assumption One: Parents of young children with challenging behavior will report difficulties obtaining accurate and useful information regarding their childs challenging behavior 91
iii Assumption Two: Parents of young children with challenging behavior will report difficulties obtaining services and supports designed to reduce their childs rate of challenging behavior 99 Assumption Three: Parents of young children with challenging behavior will report that their childs challenging behavior cr eated financial stress 108 Assumption Four: Parents of young children with challenging behavior will report experiencing stress among members of their family 116 Assumption Five: Parents of young children with challenging behavior will report that they experience community isolation as a result of their childs challenging behavior 119 Question Two: What t ypes of protective factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to positively influence the experiences of young children with challenging behavior living within Hillsborough County, Florida? 125 Individual Level 125 Microsystem Level 128 Exosystem Level 131 Chronosystem Level 131 Question Three: What types of risk factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to negatively influence the experiences of young children with challenging behavior living in Hillsborough County, Florida? 134 Individual Level 134 Microsystem Level 136 Exosystem Level 140 Chronosystem Level 141 Summary of Questions Two and Three 145 Chapter Five. Discussion 147 Review of Research Questions 147 Research Questions 147 Question One: What are the experiences of parents obtaining Services for young children with challenging behavior living in Hillsborough County, Florida? 147 Obtaining information about challenging behavior 148 Obtaining services and supports 150 Financial stressors 151
iv Strained family relationships 153 Community isolation 154 Summary 155 Question Two: What t ypes of protective factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to positively influence the experiences of young children with challenging behavior living within Hillsborough County, Florida? 156 Question Three: What types of risk factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to positively influence the experiences of young children with challenging behavior living within Hillsborough County, Florida? 157 Limitations 161 Implications for Future Research and Practice 164 Conclusions 168 References 169 Appendices 193 Appendix A: Interview Protocol 194 Appendix B: Flyer for Participant Recruitment 199 Appendix C: Family Demographic Data Form 200 Appendix D: Informed Consent 201 Appendix E: Bracketing Interview 204 Appendix F: Theme Verificati on Protocol 213 Appendix G: Participant Demographic Information 214 Appendix H: Assumptions and Categories for Research Question One 221 About the Author End Page
v Giving Voice to Parents of Young Ch ildren with Challenging Behavior Jonathan Worcester ABSTRACT In recent years, there has been increa sed interest in the science of child development, particularly relative to early ch ildhood (i.e., birth to 5 years) and children with challenging behavior. A broad intere st in brain-behavior relationships and prevention services for young ch ildren has led to a renewed in terest in the developmental significance of early life expe riences (National Research C ouncil & Institute of Medicine, 2000). Armed with an increasingly large body of neuroscience research, researchers have begun to examine the efficacy of prevention services and supports for young children and families, particularly those with challenging behavior (i.e., behaviors that interfere with optimal learning or engagement in prosocial interactions with peers and adults; Powell, Fixsen, & Dunlap, 2003). In light of such a research agenda, the voices of parents are often left unheard, despite widespread acknowle dgment that parents are the childs first and most important teacher (Ferrell, 1985). A sizable body of interdiscipl inary research has evolved in support of a system of care designed to both improve childrens growth and development and to prevent occurrences of challenging behavior in young chil dren. While qualitative studies in early intervention and early childhood special education are presen tly lacking (Sandall, Smith, McLean, & Ramsey, 2002), local efforts have be gun to investigate the impact of services
vi for young children with special needs in H illsborough County, Florida (Raffaele Mendez & Hess, 2003). However, deta iled reports of parent experi ences were not possible, nor did the study focus on challenging behavi or. Consequently, the purpose of this qualitative study was to obtain detailed pa rent reports of experiences raising young children with challenging behavior Analyzed within an ecol ogical framework relative to emergent themes and reported patterns of risk and protective factors, participating parents were afforded an opportunity to share their stories and provide illustrations of experiences raising youn g children with challenging beha vior. Results indicated that parents not only shared many similar expe riences (e.g., difficulties obtaining accurate information, obtaining services and supports, fi nancial stress, stress within the family, and community isolation), but also reported comparable ecological risk and protective factors impacting their childs behavior. Implications for research and practice are discussed.
1 Chapter One Introduction In recent years, there has been an incr eased interest in the science of child development, particularly within the early childhood years (i.e., birth to 5 years) and specifically pertaining to children who exhibit challenging beha vior. A broad interest in brain-behavior relationships and preventi on services for young children has led to a renewed interest in the developmental signi ficance of early life experiences (National Research Council & Institute of Medicine, 2000) as well as the nat ure versus nurture argument. Armed with an increasingly large body of neuroscience research (Cadoret, Winokur, Langbehn, Troughton, Yates, & Stewar t, 1996; OConnor, Deater-Deckard, Fulker, Rutter, & Plomin, 1998; Plomin, Fulk er, Corley, & DeFries, 1997; Rutter, Dunn, Plomin, Simonoff, Pickes, Maughan, Ormel, Meyer, & Eaves, 1997; Rutter, Silberg, OConnor, & Simonoff, 1999), researchers ha ve begun to ask questions about the efficacy of prevention services and supports for young children, particularly those with challenging behavior (i.e., behaviors that interfere with optimal learning or engagement in prosocial interactions with peers and adults; Powell, Fixsen, & Dunlap, 2003). In light of such a research agenda, the voices of parents have been often left unheard, regardless of widespread acknowledgment that parents are the child s first and most important teacher (Ferrell, 1985). Not only are parents t eachers, but they are also experts, with
2 stories to share that can sh ed new light on what is known about the science of child development. While additional qualitative rese arch studies are needed within the fields of early intervention/earl y childhood special education (EI/ECSE; Sandall, Smith, McLean, & Ramsey, 2002), national organizatio ns have begun to assess the political, social, and economic impacts of child development. Building a Rationale for Early Intervention Services One of the seminal research efforts c onducted in this area was commissioned by the National Research Council and the Institute of Medicine (2000) with the dual purpose of synthesizing the existing body of research in this area, as well as providing an analysis of its corresponding social, economic, and polit ical implications. Emerging from this project were 10 core concepts of development: 1. Human development is shaped by a dynamic and continuous interaction between biology and experience; 2. Culture influences every aspect of hu man development and is reflected in childrearing beliefs and practices desi gned to promote health adaptation; 3. The growth of self-regulation is a cornerstone of early childhood development that cuts acro ss all domains of behavior; 4. Children are active participants in th eir own development, reflecting the intrinsic human drive to explor e and master ones environment; 5. Human relationships, and the effects of relationships on relationships, are the building blocks of health development;
3 6. The broad range of individual di fferences among young children often makes it difficult to distinguish norma l variations and maturational delays from transient disorders and persistent impairments; 7. The development of children unfolds along individual pathways whose trajectories are characterized by continui ties and discontinuities, as well as by a series of significant transitions; 8. Human development is shaped by th e ongoing interplay among sources of vulnerability and sources of resilience; 9. The timing of early experiences can ma tter, but more often than not, the developing child remains vulnerable to risks and open to protective influences throughout the early years of life and into childhood; and 10. The course of development can be altered in early childhood by effective interventions that change the balanc e between risk and protection, thereby shifting the odds in favor of more adaptive outcomes (pp. 3-4). Though the findings of this project provided strong theoretical and anecdotal empirical support for the support the provision of comprehe nsive services and supports at an early age in order to prevent more serious, long-te rm outcomes, rigorous empirical replications of meaningful outcomes remain in need (Bailey, 2000, 2001; Bailey, McWilliam, Darkes, Hebbeler, Simeonsson, Spiker, & Wagner, 1998; Carta, 2002; Guralnick, 2000; Turnbull & Turnbull, 2000). Given the fact that ove r 200,000 children and families receive Part C early intervention services and supports in the United States (Hebbeler, Spiker, Mallik, Scarborough, & Simeonsson, 2003; U.S. Depart ment of Education, 2000), documentation
4 of meaningful system level as well as child and family level outcomes has become an issue of national signific ance and critical need. Among the many research efforts presently investigating outcomes of children receiving early intervention services is the National Longitudinal Early Intervention Study (NEILS; Bailey, Scarborough, & Hebbeler, 2003; Hebbeler et al., 2003; Hebbeler, Spiker, Mallik, Scarborough, Simeonsson, & Co llier, 2001; Hebbeler, Spiker, Wagner, Cameto, & McKenna, 1999), a longitudinal stud y of over 3,000 children who were either disabled or at-risk of disability and were followed beyond preschool into the elementary school years. The purpose of this study was to not only identify patterns of demographic characteristics of children and families but to also document the types of services and child and family outcomes that were experienced. Among the studys initial demographic findi ngs was a bimodal distribution of the ages in months of children at the time of th eir initial eligibility for early intervention services (Hebbeler et al., 2001). Relative to this distri bution, the authors found greater proportions of children between the ages of 2 to 10 months and 24 to 32 months, concluding that the corresponding age clusters were attributable to greater numbers of children diagnosed with medical conditions in th e first year of life and greater numbers of children with identified developmental dela ys as they reached age three (pp. 9-10). Likewise, subsequent reports of the NEILS study indicated that children who entered early intervention at younger ages also had mo re demographic risk factors than children who entered at later ages (Hebbeler et al., 2003).
5 Bronfenbrenners Ecolog ical Model of Child Development Although conclusions regarding difference s between the two age clusters were drawn on the basis of available demographic characteristics, it is important to consider the findings relative to a theo retical framework of early ch ildhood development. One of the most widely accepted and supported frameworks is Bronfenbrenners ecological theory of child development (Bronfenbre nner, 1979; 1986; 1999) which considers a childs development within a complex syst em of relationships affected by multiple levels of the surrounding environment (Berk, 2002). Bronfenbrenners model is comprised of five different systems. The microsystem is defined as a childs direct interactions with immediate family me mbers and his or her surroundings. The mesosystem refers to a childs connecti ons to individual microsystems (e.g., home, preschool, hospital, peer group, local neighborho od). The exosystem describes the social environment that indirectly impact the child s experiences (e.g., ma ternal and paternal places of employment, parental support networks). The macrosystem is defined as a cultures overarching laws, va lues, and customs, while the chronosystem refers to the sequence or pattern of events that impact a childs development (Berk, 2002). Within Bronfenbrenners model, the five systems inte ract dynamically; that is, each system has the potential to impact the other, and all of them affect the childs individual developmental trajectory. Since its original articulation in 197 9, Bronfenbrenners model has received considerable support and endorsement, particul arly from proponents who argue that child development is mediated by environmental variab les. In fact, many of the core concepts identified by Shonkoff and Phillips (2000) embody the ecological framework (e.g.,
6 human development is shaped by a dynamic and continuous interaction between biology and experience; culture influences ever y aspect of human development; human relationships are the buildi ng blocks of health development; the timing of early experiences can matter, but more often than not, the developing child remains vulnerable to risks and open to protectiv e influences throughout the early years of life and into childhood; pp. 34 ). These core concepts not on ly support the ecological model but provide specific examples of the patterning of environmental events and transitions over the life course, that impact familia l functioning (Bronfenbrenner, 1986). Another central advantage to conducting research using ecological theory as a theoretical framework of ear ly childhood development is its fit within a prevention model, where issues are considered relative to their impact upon a regi onal system of care for young children and their families (SOC; Stroul & Friedman, 1986). Defined as a comprehensive spectrum of mental health and other necessary services which are organized into a coordinated network to meet the multiple and changing needs of children and adolescents (Stroul & Friedman, 1986), th e SOC is an exosystem designed with the intention of playing a significant role in pos itively influencing the lives of children and families in need of support. Using the ecological framework, professionals within the SOC are able to identify patterns of variables that either positively or negatively impact the children and families they support. When used in this fashion, the ecological model not only helps explain the pro cess of development but also contributes to the evaluation of the SOC in which it is applied. In an example of such an evaluati on, Raffaele Mendez and Hess (2003) conducted an analysis of community-based services and supports for children and families within
7 Hillsborough County, Florida. Using a mixed methods design, the researchers sought to estimate the number of children in the county who were identified w ith special needs and identify both the challenges faced by their families and gaps in local service delivery. Among the children aged birth to th ree, several challenges were identified: 1) arriving at a proper diagnosis; 2) the childs primary car e pediatrician was not always helpful; 3) entering and navigating the system of care; 4) balancing work and child care; and 5) obtaining parent support (Ra ffaele Mendez & Hess, 2003). Likewise, the authors identified a number of service gaps for chil dren birth to 3, includi ng a lack of adequate developmental screening and assessment, lim ited access to information, deficiencies in public school education, care coordination, ch ildcare, access to social opportunities, accessible mental health, limited employment, transition, and transportation (pp. 5-9). Relative to the local SOC, the authors offered several suggestions for changing exosystemic variables within the comm unity, including creating a comprehensive community resource directory, organizing a coordinating council to disseminating information to parents and providers, and strengthening linkages between the medical community, schools, and other providers (p. 9) Outlining a set of coordinated, multi-step action plans linked to their research fi ndings, the authors recommendations were designed to directly strengthen the Hillsboroug h County SOC, thus indirectly benefiting every recipient within the county. Based on applications such as those described above, Bronfenbrenners ecological framework appears to be a useful tool for evaluating the system level effectiveness of a local SOC, as it affords the opportunity to assess the patterns of variables that either strengthen or weaken the system over time. The ecological model has helped parents and
8 professionals recognize and influence the broad array of external infl uences affecting the capacities of families, organi zations, and communities to support young children with disabilities (Bronfenbrenner, 1986). While this model has directly enhanced the accountability and efficacy of all services a nd supports, the use of such an approach has been particularly important for young childre n with challenging behavior, who often require high levels of service and have inconsistent or poor outcomes. Unfortunately there has been an increasing tr end in the number of young children with challenging behavior. E stimates may be as high as 12% or 16% of the total population aged birth to three (Campbell, 1994 ; American Academy of Pediatrics, 2001). In light of sharp increases in federal a ppropriations for Part C services from 1992 to 2002, services and supports were provided to only 2.14% of the national population of children birth to three in 2002 (Danaher, 2002). Consequent ly, federal legislators and policy makers have sought to develop, implement, and evaluate strong prevention programs for young children in order to minimize the prevalence and impact of child psychopathology over time, particular ly with respect to challenging behavior Purpose A sizable body of interdiscipl inary research has evolved in support of a system of care designed to both improve childrens gr owth and development and to prevent the occurrence of challenging behavior in young ch ildren. In lieu of strong theoretical support (e.g., Dunlap & Fox, 1996; National Res earch Council & Institute of Medicine, 2000), there is a great need to demonstrate the Part C programs accountability for both children and their families. Studies are needed to document the programs overall efficacy, as well as its impact on young children and their families. While the need for
9 objective, empirical studies is clear, they are not a panacea. Qualitative studies in EI/ECSE are presently lacki ng (Sandall, Smith, McLean, & Ramsey, 2002), despite the fact that quantitative studies may not adequa tely measure family-related outcomes. Such a position has been supported by Bailey a nd his colleagues (1998), who suggested the following: Measurement strategies typically call for objective assessment by an individual who has no personal invest ment in whether the outcomes are attained. However in the case of family assessment, the attainment of most family outcomes (e.g., hope, perceived control) is a personal experience that can only be reporte d by family members themselves (p. 315). Consistent with this rationale, Fox, Va ughn, Wyatte, and Dunlap (2002) conducted a qualitative study with 20 family members w ho participated in positive behavior support (PBS) interventions for children aged three to 12 with challenging behavior. Using an open-ended interview format, the authors identified three themes: 1) the difficulties of coming to terms with a childs disability; 2) the importance of having support from others; and 3) the pervasive impact that ch allenging behavior exer ts on all aspects of family functioning (p. 437). Over the course of their investiga tion, the authors also shared their impression that the families interv iewed felt a need to describe the onset of their journey and felt that those difficult begi nnings were relevant to their present-day circumstances (p. 448). Likewise, the authors reported that such information had provided them with a greater understanding a nd appreciation for the magnitude of impact their childs challenging behavior had upon the entire family system.
10 Locally, an effort has been made to lear n more about the impact of services and supports for young children with special need s in Hillsborough County, Florida (Raffaele Mendez & Hess, 2003). Though the study addre ssed the concerns of families with children aged birth to three, detailed reports of parent expe riences were not possible, nor did the study focus on young children with ch allenging behavior. Consequently, the purpose of this study was to obtain detailed parent reports of e xperiences raising young children with challenging behavior Analyzed within an ecological framework and relative to reported patterns of ecological risk and protective f actors, emergent themes not only offered participating parents an opportunity to share thei r stories but also provided an illustration of the experiences of pare nts of young children with challenging behavior living in the Hillsborough County region. Research Questions The following research questions we re addressed in this study: 1. What are the experiences of parents ob taining services for young children with challenging behavior living in Hillsborough County, Florida? 2. What types of protective fact ors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are percei ved by parents to positively influence the experiences of young children with cha llenging behavior living in Hillsborough County, Florida? 3. What types of risk factors (i.e., micr osystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are percei ved by parents to negatively influence the experiences of young children with cha llenging behavior living in Hillsborough County, Florida?
11 Definitions Challenging Behavior For the purpose of this study, the term challenging behavior was defined as any repeated pattern of behavior, or perception of behavior, that interferes with or is at risk of interfering with optimal learning or engagement in prosocial interactions with peers and adults (Powell, Fixsen, & Dunlap, 2003). Examples of challenging behaviors include prolonged tantrums, physical and verbal aggression, noncompliance, property destruction, stereotopy, self-i njury, withdrawal, and screaming (Powell, Fixsen, & Dunlap, 2003). Regardless of its topography, challenging behaviors all result to some degree in a functional impairment in some aspect of the childs daily functioning (e.g., social, academic, communicative, or adaptive functioning). IDEA Part-C: The Infants and Toddl ers with Disabilities Program Prior to the advent of PL 99-457, Th e Education for the Handicapped Act Amendments of 1986, children were generally unable to receive s upport services until they were old enough to enter school. Th rough the advent of funding for special education and related services for preschool ers (Part B) and children under age 3 (Part C), benefits granted by the Individuals with Disabilities Education Act (Office of Special Education and Rehabilitation Services, 1997) be came available to all children. Relative to Part C, the program was established with three purposes in mind: 1) to enhance the development of infants and toddlers and mini mize the potential for developmental delays; 2) to control costly special education serv ices provided in elementary and secondary schools; 3) to strengthen and enhance the abili ty of families to address the needs of their
12 children, particularly those from underre presented and disadv antaged populations (Powell, Fixsen, & Dunlap, 2003). Being national legislation, the Part C progr am is responsible for establishing and maintaining statewide systems of early inte rvention across each of the 50 states and federal territories. While Part C mandates specific components of statewide programs, each state and territory must define the populat ion of children considered at-risk and in need of service delivery, iden tify appropriate diagnostic inst ruments, procedures, and set criteria to be used when dete rmining eligibility (NECTAC, 2 004). As a result, the federal mandate (i.e., Part C) authorizes the role and function of comp rehensive stateand regional-level early interven tion programs (EIPs) charged with its implementation. Young Children For the purpose of this study, young children were defined as children aged birth to three years of age (i.e., thr ee years, 11 months, 30 days).
13 Chapter Two Literature Review The purpose of this chapter was to provi de the reader with a review of the relevant literature pertaining to this study. Specifically, six areas we re addressed: 1) the ecological theoretical framewor k; 2) the prevalence and significance of children birth to three with challenging behavior ; 3) national-level systems of care for children birth to three with challenging behavior ; 4) local-level systems of care for children birth to three with challenging behavior; 5) parent percep tions and experiences a ssociated with their childs disability; and 6) the qualitative research me thodology used in this study. The Ecological Theoretical Framework In order to further understand the theoreti cal perspective of this researcher, it is necessary to present and discuss the ecol ogical theory (Bronfenbrenner, 1979; 1986; 1999), which served as a framework for understanding and interpreting information obtained from this study. Built upon the basic premise that ecosystems consist of the family and its interaction with the environment, (Bubolz & Sontag, 1993) human ecology or ecological theory adheres to a number of central premises, including: 1) as human groups, families are part of the total life system, interdepe ndent with other forms of life and the nonliving
14 environment; 2) all parts of th e environment are interrelated and influence each other; 3) interactions between families and environm ents are guided by both biological laws of nature and human-derived rules; 4) families have varying degrees of control and freedom with respect to environmenta l interactions; and 5) decision making is a central control process in families that directs actions for attaining individual and family goals (Bubolz & Sontag, 1993). Practically speaking, ecological theory offers a means for understanding the external influences upon an individual and his/her subsequent development. The most significant contribution of hu man ecological theory to the social sciences was developed by Urie Bronfenbrenner, who created a four-tier model of family ecosystems. Using the four-tier model of micro-, meso-, exo-, and macro-systems, Bronfenbrenners model provides a framework for understanding the impact of familial behavior as it is influenced by extra-familial conditions and environments. Relative to children and families, the ecological perspectiv e promotes understanding of the external influences that can affect the capacity of families to foster the healthy development of their children (p. 723). Bronfenbr enner presents four levels of influence, each serving as a unique context for a childs development. The microsystem is comprised of the family unit, such as the individual child, parent s, siblings, and extended family. The mesosystem refers to interactions, relations hips, and the degree of match or mismatch among various microsystems and between microsystems and exo-systems. The exosystem is comprised of those external setti ngs where the child has indirect contact (e.g., parents work environment), and finally, the macro-system is described as the broad ideological values, norms, and institutional patterns of a particular culture that make up
15 the blueprints for the cultures ecology of human development (Bubolz & Sontag, 1993). A unique feature of the ecologi cal model is that it is not a static model; the model serves as a dynamic framework for understanding the ways by which different systems within the environment influence an individu als development. In this regard, the ecological model offers a greate r understanding of the context in which the child lives. Given the fact that the purpose of this st udy was to obtain a greater understanding of the context of families of young children with chal lenging behavior, this theory appeared not only well suited, but an optimal fou ndation from which to build. Prevalence and Significance of Children Birth to Three with Challenging Behavior In recent years, childrens mental health has been increasingly recognized as an issue of national significance. Childrens mental health cont inues to be one of Americas most pressing public health concerns (National Research C ouncil & Institute of Medicine, 2000; New Freedom Commission on Me ntal Health, 2003; U.S. Department of Health and Human Services, 2000). Efforts to improve the social and emotional health of young children have become a national priori ty, as evidenced by the Presidents New Freedom Commission on Mental Health (2003), the Surgeon Generals National Action Agenda for Childrens Mental Health (U.S. Public Health Service, 2000), and Healthy People 2010 (U.S. Department of Health and Human Services, 2000). Seeking to reduce the mounting stress placed upon the nations systems of education and public health, federal legislators and policy makers have sought to develop and implement strong prevention programs designed to both s upplement existing treatment programs and minimize the prevalence and manifestati on of child psychopathology over time. For
16 example, the New Freedom Commission on Ment al Health identified early mental health screening, assessment, and referral to se rvices as one of its top six goals (p. 5). Specific to young children, the Commission arti culated objectives designed to promote the mental health of young children, improve and expand school mental health programs, and link primary health care to treatment a nd supports within the community (p. 57). Likewise, the U.S. Public Health Service s top three goals incl uded an interest in improving the assessment and recognition of me ntal health needs in children (p. 4). Additionally, one of the goals of Healthy Pe ople 2010 is to improve mental health and ensure access to appropriate, quality mental health services (p. 17), with supplemental objectives recommending an increase in the num ber of children receiving mental health screening and assessment (goal 18-6) and treatment (goal 18-7) (p. 58). Though the population of children aged birth to three comprises only a portion of the total pediatric population, it is clear that the nations health and public health agendas have included an interest in reducing ra tes of challenging behavior in young children. Relative to these goals, the increased prevalence of challenging behavior in young children has been among the most striking of research findings driving recent policy efforts (Division of Early Childhood, 1999; Cam pbell, 1994; Zito et al ., 2000). Overall, the most frequently reported prevalence rate of challenging behavior was the one reported by Campbell (1994), who concluded roughly 10% to 15% of preschool children (ages two to six years) have mild to moderate problems (p. 117). However, Campbells estimate, as well as others, should be interp reted with caution: prevalence rates for disorders in samples of children under age tw o were absent from the literature (Powell, Fixsen, & Dunlap, 2003). Likewi se, it is also important to recognize that prevalence rates
17 have been highly dependent upon a number of factors, including sample, age, gender, methodology, and instrumentation (Powell, Fixse n, & Dunlap, 2003). Therefore, it is not surprising that prevalence estimates ranged from 3% to 6% (Achenbach & Edelbrock, 1981; Hebbeler et al., 2001) to as high as 19% to 21% among different populations (American Academy of Pediatrics, 2001; Kais er, Hancock, Cai, Foster, & Hester, 2000; Navon, Nelson, Pagano, & Murphy, 2001). Similarl y, the finding that boys tended to demonstrate challenging behavior more often than girls may also be explained as a possible artifact of different factors (Campbell, 1994; Kais er, Hancock, Cai, Foster, & Hester, 2000; Qi & Kaiser, 2003; Zean ah, Boris, & Larrieu, 1997). In addition to these studies, a wealth of evidence supports the notion that prevalence rates of challenging behavior vari ed depending upon the presence of risk or protective factors. For example, Qi and Ka iser (2003) reported that while estimates of challenging behavior vary somewhat with in the general population, estimates are reported at a higher rate among families with a lower socioeconomic status (SES; p. 188). Specifically, rates of challenging behavior were greater for children of families with a lower SES who experience single or multiple ri sk factors at either the individual (e.g., low birth weight, difficult temperament), mi crosystem (e.g., maternal education, maternal depression, parental substance abuse, poor parenting practices), or exosystem (e.g., financial macrosystem) levels (Campbe ll, 1994; Huffman, Mehlinger, Kerivan, Cavanaugh, Lippitt, & Moyo, 2001; Ingoldsby, Shaw, Owens, & Winslow, 1999; Landy, 2002; Nuttall, Romero, & Kale snik, 1999; Qi & Kaiser, 2003 ; Zigler & Freeman, 1987; Zill, Collins, West, & Hausken, 1995). Regardle ss of the specific rate of challenging behavior each study reported, th e most valuable contribution of these studies was that
18 they consistently illustrated a direct relati onship between increased rates of challenging behavior and the presen ce of risk factors. This supporte d the rationale fo r the provision of comprehensive supports to young children wi th challenging behavior. Likewise, the presence or absence of risk and protectiv e factors has provided professionals with information about which i ndividual children may be at risk for developing internalizing and externalizing behavior disorders, low acad emic achievement, poor social interactions, and poor peer relationships (Campbell & Ew ing, 1990; Huffman, Mehlinger, & Kerivan, 2000; Moffit, 1990; Stormont, 2000). Research has also shown a relationship among rates of challenging behavior and diagnosis of chronic pediatric conditions. Certain disorders and conditions (e.g., asthma, sickle cell anemia, diabetes, fetal alcohol syndrome, prenatal drug exposure, HIV/AIDS, otitis media) also have increased in recent years, and many of these conditions have psychological components and sequelae (D onenberg, 2001; Mangione, Landau, & Pryor, 1998; Roberts, 1995; Sexon & Madan-Swain, 1995). Such findings further substantiate the pervasive impact of challenging behavior among a greater proportion of young children. Given the evidence available within th e empirical literature base, it is not surprising that there has been an increase in the number of children in need of mental health services, particularly among young ch ildren. For example, the United States Department of Education estimates that th e number of children served in the national early intervention system has increased by approximately 32% between 1988 and 1998 (Hebbeler et al., 2001; U.S. Census Bureau, 1999). Within this population, the majority of children who demonstrated needs for service were boys (61%) and children from a
19 cultural minority group (44%; Hebbeler et al ., 2001). With respect to the specific concerns and needs demonstrated by this population of children, data from the National Early Intervention Longitudinal Study (Hebbeler et al., 2001) indicated that 58% of all children were deemed eligible for services due to the presence of a developmental delay, 28% due to a diagnosed medical/developmental condition, and another 13% due to circumstances placing them at-risk for delayed growth and development (p. 5). The most frequently reported concern was a speech/co mmunication impairment or delay (41%), followed by prenatal/perinatal problems (19%), gross or fine moto r delays (17%), and global developmental delays (12%) (Hebbeler et al., 2001). While reports of challenging behavior were not explicitly reported, it is reasonable to assume that challenging behavior was a prominent concern among families reporting delayed growth and development. The reason for this concern was that young children experiencing frustration or difficulty performing a specific skill or participating in a particular routine often expressed thei r frustration through challenging behavior (Dunlap & Fox, 1996; Hart & Risley, 1975; 1999). Such patterns were particularly evident among children with speech and la nguage difficulties, the most frequently reported concern in the National Ea rly Intervention Longitudinal Study (Hebbeler et al., 2001). Given the fact that children who are not able to express them selves verbally were forced to attempt to express themselves through nonverbal comm unication (e.g., pointing, leading, gesturing), challenging behavior often resulted due to frustration. There also was a well-defined relationship between hearing concerns (e. g., congenital hearing impairments, otitis media), difficulties unders tanding and producing intelligible language, and rates of challenging behavior (American Psychiatric Association, 1994; Creps &
20 Vernon-Feagans, 2001; Vernon-Feagans, Manl ove, & Volling, 1996). Children who are unable to hear language were less likely to develop age-appropriate receptive and expressive language skills. Likewise, challenging behavi or also is represented among children with diagnosed medical/developm ental conditions, many of which include challenging or atypical behavior as part of their diagnosti c criteria (e.g., autism spectrum disorders, adjustment reactions attachment disorders; Amer ican Psychiatric Association, 1994). Medication and the Long-term C ourse of Challenging Behavior While national and statewide rates of young children with cha llenging behavior have increased, trends for pr escribing medications to treat challenging behavior in young children have increased as well, particularly in the last 15 years (Zito et al., 2000; Kennedy & Meyer, 1998). Prescription rate s have increased for the three major psychotropic drug classes of stimulants, an tidepressants, and neuroleptics. Though pediatric clinical trials for these medications have often been lack ing (Zito et al., 2000), many young children are prescribed psychot ropic medication. The annual rate of stimulant prescriptions for children two to four years of age increased from 3.57 prescriptions to 8.77 prescriptions per 1,000 children (Zito et al., 2000). Similar increases were reported in the other two drug classes. Together, these data suggest that as the prevalence of challenging behavior exhibited by young children appears to have increased, many parents and professionals ha ve resorted to medication in order to suppress the childs behavior before their behaviors become more severe. A growing body of research has indicated that challenging behaviors exhibited by young children are often not outgrown, and in fa ct, have been known to worsen over time
21 (Ingoldsby, Shaw, Owens, & Winslow, 1999; Keenan &Wakschlag, 2000; McEvoy & Reichle, 1995). Young children with challe nging behavior problems are frequently diagnosed and labeled with externalizing disorders (e.g., Oppositional Defiant Disorder, Attention-Deficit Hyperactivity Disorder, Conduct Disorder) upon enrollment in elementary school, and are often placed in special education programs and/or receive costly individualized supports within the home, school, and community (Kaiser & Hester, 1997; Keenan & Wakschlag, 2000; Pierce, Ewing, & Campbell, 1999). Research has also supported the impre ssion that externalizing disorders exist along a continuum or developmental trajectory, where patterns of behavior meeting a set of diagnostic criteria (i.e ., ODD, ADHD) frequently escal ated into conduct disorder (CD), one of the most serious forms of childhood psychopathology (American Psychiatric Association, 1994; Hinshaw & Anderson, 1996; Loeber & Coie, 2001). Following this continuum, aggression e xhibited by young children may predict future episodes of aggression in chil dhood and adolescence, as well as a possible diagnosis of psychopathology such as ADHD, ODD, or adult antisocial behavior (Broidy, Nagin, Tremblay, Bates, Brame, Dodge, Ferguss on, Horwood, Loeber, Laird, Lynam, Moffitt, Pettit, & Vitaro, 2003; Campbell & Ewing, 1990; Campbell, Pierce, Moore, Marakovitz, & Newby, 1996; Keenan & Wakschlag, 2000; Lahey & Loeber, 1997; Moffit, 1990; Stormont, 2000; Tolan Guerra, & Kendall, 1995). While diagnosis of ODD may not always be a developmental precursor of CD (Lahey, McBurnett, & Loeber, 2000), research indicated that chronic disruptive a nd aggressive behaviors, especially among young boys, tend to be predictive of more seve re adolescent and adult psychopathology (e.g., Antisocial Personality Disorder, Conduct Disorder). Furthermore, research
22 indicated that many juvenile boys who become serious offenders had first demonstrated such behavior prior to age 12, the majority of which had been doing so for a period of at least five years prior to turning 12 (Stouthamer-Loeber & Loeber, 2002). Challenging behavior exhibi ted by young children appears to be part of a model of antisocial development that has been subs tantiated with research, including exposure to coercive and inconsistent discipline, acad emic failure, and peer rejection (Patterson, DeBaryshe, & Ramsey, 1989). Together, these variables have snowballed into a number of dangerous and destructive so cial problems for children wi th antisocial development, including school bullying, gang related activity and associat ion with antisocial peers, substance abuse, high school drop out, juven ile offenses, and acts of violence, including violence in schools and weapons use (Batsc he, & Knoff, 1994; Br oidy, Nagin, Tremblay, Bates, Brame, Dodge, Fergusson, Horwood, Loeber, Laird, Lynam, Moffitt, Pettit, & Vitaro, 2003; Lahey & Loeber, 1997; Moffit, 1990; Patterson, DeBaryshe, & Ramsey, 1989; Tolan, Guerra, & Kendall, 1995). Considering the fact that these outcomes have been found to act as accelerators and predictors for adult vi olence and criminal behavior (American Psychological Association, 1994), a strong rationale exists for intervention during the preschool and elem entary school years so that subsequent developmental outcomes (e.g., externalizing childhood psychopathology, adolescen t/adult antisocial behavior) may be prevented. National Systems of Care for Children Bi rth to Three with Challenging Behavior It has been estimated that nearly tw o thirds of all ch ildren in need of comprehensive mental health services and s upports do not receive the services they need (Joint Commission on the Mental Health of Children, 1969; Knitzer, 1982; 2000). In
23 support of such a large-scale need, the federal government has primarily relied on the Departments of Health and Education in orde r to establish and maintain a comprehensive system of care for all children and familie s. Defined by Stroul and Friedman (1986), a system of care is a comprehensive spect rum of mental health and other necessary services which are organized into a coordinated network to meet the multiple and changing needs of children and adolescents ( p. 3). Articulating a set of core values inherent to an effective system of care, the authors asserted that th e system of care should be: 1) child-centered and family-focused, driven by the needs and valu es of the child and family; 2) community-based, with services and supports administered and managed locally; and 3) culturally-com petent, respecting cultural, racial, and ethnic differences (p.18). In simpler terms, the system of care is a framework designed such that services and supports have been maximally individualized and customized to directly target the specific skill deficits impac ting a child and familys quality of life (e.g., Hughes, Hwang, Kim, Eisenman, & Killian, 1995; Schalock, 1994; Turnbull, Turnbull, Wehmeyer, & Park, 2003). Originally conceptualized as a multi-co mponent model targeting children and adolescents with severe emotional handicaps, the system of care model has served as a model or framework for the administration and provision of services and supports for infants, toddlers, and their families Relative to young ch ildren with challenging behavior, two federal agencies have served pr ominent roles: the Department of Health and the Department of Education The Department of Health oversees, the Medicaid program, which is authorized through Title XI X of the Social Security Act (Agency for Health Care Administration, 2003a) and has been governed by the Agency for Health
24 Care Administration (AHCA). In contrast the Part C early intervention program, a component of the Individuals with Disabili ties Education Act (IDEA; Office of Special Education and Rehabilitative Services, 1997), ha s served as the central service delivery model administered by the Department of Edu cation. In the following sections, both the Medicaid and Part C programs have been pr esented, with their respective rationales, strengths, and weakne sses articulated. The Social Security Act The Social Security Act is a combined federal/state entitlement program that provides financial support for children and fa milies whose low SES prevents them from receiving proper medical care (Centers for Medicare and Medicaid Services, 2003a; Social Security Administration, 2003). Origin ally enacted into law in 1965, the Social Security Act funds Medicaid, the largest pr ovider of funding for medical and healthrelated services and supports fo r individuals living in poverty or severe financial distress. Though a federal program, the Social Security Act has allowed states to establish their own eligibility standards, as well as rates of payment, and the scope of services (Centers for Medicare and Medicaid Services, 2003b). Medicaid Rationale and purpose. Medicaid provides financia l support for children and families with low incomes who require services related to the assessment and treatment of medical and developmental conditions (Berson, Vargo, Dailey, Zheng, & Powell, 2003; Centers for Medicare and Medicaid Services, 2003b). Ad ministered by AHCA (Agency for Health Care Administration, 2003b) Medicaid has historically covered a wide array of services, including inpatient and outpatient hospitalization, pediatric and
25 nursing services, vaccinations, ru ral health clinic services, home health care, and early and periodic screening for young children through the Early and Periodic Screening, Diagnostic, and Treatment Program (EPSDT; Wishmann, Kates, & Kaufman, 2001). In addition to these services, some states have also approved additional services and supports on an optional basis, including diagnostic and c linic services, optometry services, rehabilitation/physical therapy, and home/community-based care to persons with chronic impairments (Centers for Me dicare and Medicaid Services, 2003b). Within the state of Florida, Medicaid has served as a major funding source for children and families with special needs For example, Berson and colleagues (2003b) reported that during FY2000, 10,190 children bi rth to three received Medicaid-funded services (p. 8). Though the total expend iture for FY2000 exceeded $10 million, only 2% of the total population of child ren under age 3 in Florida were served (N = 563,068; p. 8). Increasing slightly to 11,420 children in FY2001, the total expenditure rose to exceed $11 million, while providing services to roughly the same proportion of the states population of young children (Berson et al., 2003b). The strengths of Medicaid. There are a number of importa nt strengths inherent to the Medicaid model. First, Medicaid has offered a wide variety of services to children and families living in poverty, for which they might not otherwise have access. Second, Medicaid has played an important role in the integration of serv ices for young children and families. For example, there is a well-documented overlap in services provided for children enrolled in both Part C and Me dicaid (Berson, Vargo, Dailey, Lemrow, & Armstrong, 2003b). What this implied is that instances exist where children receiving Part C services also receive payment for the same services under Medicaid. While efforts
26 have been undertaken to be tter separate and clearly iden tify both Medicaid and Part C funding streams, it is encourag ing to know that there has be en a recognized need for comprehensive assessment-based interventions and supports at the federaland statelevels. The weaknesses of Medicaid. Although Medicaid has served thousands of children and families across the nation, the progr am faces a number of limitations in its present form. The most significant limitation of the Medicaid program is its theoretical orientation toward the use of a medical model (Berson et al., 2003b). Driven by diagnoses and expert opinion, Medicaid has be en generally incompatib le with the familyoriented, comprehensive supports provided in the childs natural environment that are now recognized to reflect best practices (Berson et al., 2003b; Bredekamp, 1991; Koegel, Koegel, & Dunlap, 1996). A second limitation of Medicaid has been its funding stream. In order to secure financial reimbursement, Medicaid required that providers hold prof essional licensure. This becomes a problem in the case that a pr ovider may be qualified to provide a specific intervention but does not have a professi onal license that allows for Medicaid reimbursement (e.g., Department of Education educator certification). Such a limitation has not only impacted a providers ability to secure reimbursement but also has the potential to impact the overall quality of se rvices available under the auspices of the program. While the Medicaid program has played a cen tral role in the health and well being of many children and families, it appears that the degree to which the program is tapped by families has depended upon a number of f actors. For example, Chen (2003)
27 conducted a survey of Medicaid recipients with the intention of examining their relationship between the percei ved quality of their relationships with health care providers, service utilization, and health care costs. The auth or found that an individuals trust in a health care provider was an importa nt factor in the use of services. This was particularly true for childre n, where parents of younger chil dren were more likely to report trusting their health care provider than parents of older children (Chen, 2003). Such findings illustrate the value of establis hing rapport and earning the trust of children and families, two frequent criticisms of the medical model of consultation (Brown, Pryzwansky, & Schulte, 1998). The Individuals with Disab ilities Education Act (IDEA) Theories about the impact of services and supports provided during the preschool years led to legislation that made early inte rvention a reality. In recent decades, children of all ages were guaranteed the legal right to both a free and appropriate public education under the Education of All Handicapped Child ren Act of 1975, now th e Individuals with Disabilities Education Act or IDEA (Offi ce of Special Education and Rehabilitative Services, 1997). This groundbreaking legisl ation provided all children enrolled in elementary or secondary school with the oppor tunity to receive an education, regardless of disability or handi capping condition. Part C: The Early Intervention Program Rationale and purpose. In 1986, IDEA was amended to include preschool children. Under Pub. L. No. 99-457, also know n as Part C, the federal government authorized the provision of grants designed to support the development and implementation of a comprehensive system of early interventi on for young children and
28 their families (Office of Special Education and Rehabilitative Services, 1997). Early intervention was defined under Part C as developmental services th at are provided under public supervision, provided at no cost excep t where federal or state law provides for a system of payments by families, and are designed to meet the developmental needs of an infant or toddler with a disability (Jac ob-Timm & Hartshorne, 1998). The consensus argument was that providing appropriate servic es early is of potentially greater impact than beginning services later. Accordingly, an important policy goal has been to identify and get children with developmental probl ems into programs as early as possible (Hebbeler, Spiker, Mallik, Scarborough, Sime onsson, & Collier, 2001; National Research Council & Institute of Medicine, 2000). In su pport of this goal, the law has had five specific purposes: 1) enhan ce the development of young children and to maximize their potential for overcoming developmental dela ys; 2) reduce the edu cation costs to our society, including our nations schools by mini mizing the need for special education and related services after young ch ildren with disabilities reach school age; 3) minimize the risk of institutionalization in adulthood in favor of independent li ving; 4) enhance the capacity of families to meet the needs of their children; and 5) enhance the capacity of state and local agencies and service providers to identify, evaluate, and meet the needs of historically underrepresented populations, par ticularly minority, low-income, inner-city and rural populations (JacobTimm & Hartshorne, 1998; Offi ce of Special Education and Rehabilitation Services, 1997). For years, professionals across a wide array of disciplines (e.g., medicine, psychology, education, communicat ion sciences) have argued that the preschool years (i.e., birth to five years of age) are the most significant pe riod of a childs development
29 (Berk, 2002; Guralnick & Bennett, 1987; Natio nal Research Council & Institute of Medicine, 2000; Shonkoff & Meisels, 2000) As Bijou (1975) noted, It is unquestionably the period during which the founda tion is laid for the complex behavioral structures that are built in a childs lif etime (p. 829). Similarly, Caldwell (1970) commented that, If the environment can be presumed to have its greatest impact during roughly the first four years of life, careful attention to the development of growth fostering environments during this early period is essential (p. 721). Similar endorsements can be found relative to social language, and cognitive development. Experts have agreed that the communicat ive behavior of young children serves as a foundation for later social a nd language development (Bricker, 1992). Others have asserted that the first five years of life are a critical period, during which intervention is likely to be effective in raising intelligen ce, after which intelligence may be considered fixed (Scarr & Arnett, 1987; Zigler & Freem an, 1987). Consequently, the rationale and intent of early intervention has been cl ear: Supports and services enhancing skill development at an early age have the potential to increase rates of child development and thus minimize subsequent delays experienced later in life (Dunlap & Fox, 1996). Sharing this perspective, Shonkoff and Phillips (2000) asserted, The course of development can be altered in early childhood by effective interven tion that changes th e balance between risk and protection, thereby shifting the odds in favor of more adaptive outcomes (p 32). Although there is consensus that intervening early in a childs lif e is likely to lead to positive outcomes, Dunlap and Fox (1996) highlighted another important point central to the rationale of early intervention. They suggested that se rvice delivery at an early age is particularly helpful because the earl y years of development offer a window of
30 opportunity to significantly affect serious problem behavior because young children have brief learning histories, and th eir problem behavior is less like ly to be associated with a string of varied and complex interventions (p. 34). In other words, intervention efforts geared toward preschool children with challengi ng behavior have a gr eater potential to be successful because the children have had li ttle time to learn or practice behaviors inhibiting the acquisition of age-appropriate replacement behaviors. Thus, supports targeting preschool children make sense not onl y from the standpoint that they may have a greater impact over time, but that they may be generally easier to implement as well. In support of the rationale for early in tervention, Bailey and his colleagues (1998) discussed three themes regarding the familie s of young children with mental health needs that contributed to the emergence of the ea rly intervention model. First, the authors observed that families varied relative to their resources, priorities, concerns, and culture. In other words, no two families are alike in their capacity to support their children, as well as the values and beliefs guiding them in their lives. Second, both families and professionals have acknowledged the need and right to respect families to act as partners in planning and implementing service deli very. Finally, Bailey and colleagues recognized that families are the ultimate deci sion makers and caregivers of their children, and to include them in treatment planning is to improve the likelihood of positive outcomes in the future (p. 314). As a result of this logic and interest in forming collaborative partnerships with families, a strong consensus emerged among mental health professionals that providing supports earl y in the lives of children in need was one of the best ways to reduce the overall amount of mental health need s within the nations population of children (Caldwell, 1970).
31 The role of early intervention services Although the rationale and legal precedent for early intervention has been made quite clear, it is equally important to recognize that early interventi on has never referred to a so litary intervention procedure implemented by one type of professional. Ra ther, early intervention is much more broad, constituting any form of treatment designe d to enhance any aspect of the childs development (e.g., cognitive, social, motor, ad aptive, communicative), and as a result, the type of professional provid ing early intervention has depended upon the needs of the child (e.g., pediatrician, psychol ogist, educator, nurse, behavior analyst, speech and language pathologist, occupational or physical therapist, social worker). Within such a model, professionals have had the oppor tunity to work collaboratively in multidisciplinary teams, using their expertise to directly target and create comprehensive supports relative to both a childs strengt hs and identified areas of concern. Under the auspices of Part C, Jacob-Ti mm and Hartshorne (1998) noted that each state is responsible to id entify a lead agency responsible for the administration, supervision, coordination, and monitoring of progr ams and activities in th e state. In some states, such as Florida, the supervising or ganization has been the state department of health. In others, the department of e ducation or social welfare has managed the program. Through the supervising agency, the early intervention model is comprised of four components. The first component is Child Find, a comprehensive public awareness program designed to screen and identify a ll children eligible for early intervention services within a specified catchment area (e.g., the greater Tampa Bay or Jacksonville regions). Once screened, children judged to be in need of additional evaluation receive a multidisciplinary assessment and developmenta l evaluation. This second component of
32 the early intervention model is used to assess the childs development and special needs, as well as the familys capacity to provide e ffective supports. If th e childs skills (e.g., cognitive, adaptive, social, communicative, mo tor) are significantly delayed or impaired, the evaluation team may determine eligibility for services funded through Part C. The third component, a comprehensive i ndividualized family support plan (IFSP), is written once eligibility is determined and parental consent for services is obtained. Evaluated at least once annually, the IFSP provides: 1) a stat ement of the childs current levels of functioning along with a statement of family resources; 2) a statement of anticipated outcomes resulting from funded services; 3) a statement describing the specific services to be provide d; 4) a statement of the level and intensity of service provision deemed necessary; 5) a statement de scribing the environment in which services will be provided; 6) the range of time in whic h services will be provided; 7) identification of a service coordinator who will serve as a direct liaison between parents and the early intervention system; and finally, 8) a statem ent describing the specific steps needed to ensure successful transition of the child to preschool or Head St art (Barnett, Bell, & Carey, 1999; Florida Department of Educati on, 1998). Once agreed upon by the childs parents and the early intervention program, the signed IFSP serves as a legal contract protecting the child. In a ddition to guaranteeing the n eed-specific supports to be provided, parents are guaranteed rights to confidentiality, access to records, mediation, the right to consent or declin e services, and the right to written notification prior to any changes are made to the childs I FSP (Jacob-Timm & Hartshorne, 1998). The fourth and final component of the early intervention model involves the actual services provided to children. Using the IFSP as a guideline, need-specific
33 supports are provided (e.g., speech and language therapy, physical therapy) according to the specified setting and indi cated level of intensity/frequency (e.g., therapy two times per week for 30 minutes). Data are collected to document the childs progress and are used to make decisions about changes in the childs IFSP at annual reviews. Serving the national population of children birth to three. Since the inception of Part C of the Individuals with Disabilities Education Act in 1997, percentages of children birth to three receiving serv ices and appropriations have increased significantly. The average number of children served na tionally under Part C has increased by approximately 67% from FY 1992 to 2002 and by $242 million, reflecting a 138% increase in spending over a decade (Danah er & Armijo, 2003). Though appropriation estimates reflected an increase in spe nding per child from $1050 in 1992 to $1686 in 2002, even more alarming is the fact that only 1.41% of the national population of children birth to three were served in 1992, and only 2.14% of the national population of children birth to three were served in 2002 (Danaher & Armijo, 2003). In some states, recent estimates of the number of young children found eligible for Part C services over the past six years (including those with cha llenging behaviors) far exceeded the national average. For example, the state of Flor idas number of young child ren found eligible for Part C services over the past six years ha s increased by approximately 389% according to reported rates of program elig ibility and referrals for service (University of Florida College of Medicine Perinatal/Research Center, 2000). Together, these data support the goals of national public policy efforts calling for improvements in th e identification and treatment of children wi th mental health needs, includi ng preschool-aged children at-risk
34 of delayed growth and development (New Freedom Commission on Mental Health, 2003; U.S. Public Health Service, 2000). Strengths of the early intervention model. After a consideration of the rationale and different strategies available under the early intervention model of service delivery, it is clear that there are a number of distin ct advantages in employing such a model to support young children and their families. A primary advantage is that through its attempts to maximize development and minimize developmental delays, Part C has exemplified the application of primary prev ention, a foundational c oncept reflective of best practices and care. Second, Part C ha s been organized and administered with consideration for cost and efficiency. Indexi ng both accountability a nd practicality, Part C is a statewide, multidisciplinary, interagency public health program designed to contain costs associated with maintaining more co stly special education placements and out-ofschool placements (e.g., inand out-patient hospitalization, privat e school, additional resources and treatments). A lthough the systems vary consider ably from state to state, the Part C program was designed to coordina te resources, services, and supports through a combination of local, state, federal, and/ or private resources (Hebbeler et al., 2001; Powell, Fixsen, & Dunlap, 2003; Smith & Fox, 2003). Third, Part C has embodied an ecological perspective and aims to improve th e quality of life of children and families. Through an emphasis of fostering independen ce and community integration, Part C has been geared to help empower individuals to pursue their own destinies, as well as to enhance the abilities of family members working to support children in need of services. Another important strength to the Part C program is that it has become more inclusive, more antecedentand ecologi cally-based (i.e., less emphasis on problems
35 within the child and more consideration on variables in the environment that may be changed to promote success), and more outcomes-based. Early intervention was originally designed with the intention of maintaining a child-centered focus and providing services from a wide array of discip lines, and studies suggest that the integrity of this assumption has been maintained. Finally, both parents and professionals have expressed satisfaction with the model and its efficacy (English, Goldstein, Shafer, & Kaczmarek, 1997; Guralnick, Kiser, Eaton, & Bennett, 1998; National Research Council & Institute of Medicine, 2000). In this regard, the Part C model of early intervention incorporates a social validity standard. That is, parents and professionals have acknowledged the importance of the model, the need for its use, and its value as a resource to enhance childrens growth and development. In addition to these strengths, Bricker ( 1992) studied the efficacy of the Part C system and its impact upon young children and their families. Through a review of the research literature, she identified the following ten trends: 1. There have been increased efforts to place a range of children who are disabled into community-based programs developed primarily for nondisabled children. 2. There have been increased efforts to study the effects of integration on children and families using more scientifically defensible approaches than have been employed in earlier studies. 3. There has been a move from examining more general effects toward examining more specific outcomes.
36 4. Much of the early work used group de signs, while current work frequently makes use of a single-subject approach. 5. The early work used almost exclusively quantitative methodologies and work now is either more qualitative or merges both methodologies. 6. There has been a move from focusing primarily upon the effects of integration on children with disabilities to examin ing the effects on nondisabled children and on the families involved in integration. 7. There is an increased effort to examin e more closely the various effects of integration on the parents of preschool children. 8. There is a trend toward manipulating th e physical and social environment in order to produce specific outcomes. 9. There is a movement to redefine the areas deemed worthy of intervention. 10. There is a shift in the settings in which integrated programs are conducted (Bricker, 1992). Brickers comments suggested that while the early interventi on model of service delivery has become increasingly sophistic ated, it has remained in its in fancy at the same time. It is clear that much work remains in honing the early intervention model of service delivery to better meet the needs of young children in need of mental health services, including conducting and implementing cost -benefit analyses, cost-containment strategies, and documenting ways in which I FSPs can be maintained and generalized to additional settings. However, in light of these concerns, it is clear that early intervention has become more than a legitimate mode l of mental health service delivery practitioners, researchers, and parents have attested to the models value and/or efficacy,
37 though empirical demonstrations remain elu sive (Bailey et al., 1998; Odom & Strain, 2002). While we know science has yet to find a cure for mental illness, we do know that it is possible to reduce and inoculate children and families from its devastating effects over time by treating it ea rly and comprehensively. Weaknesses of the earl y intervention model. Although its strengths are considerable, Part C has also had its share of weaknesses and limitations. Indeed, one of its strengths, cost effectiveness, is also a weakness. Proponents of the model suggested that it is cost effective. In other words, th e supports and services we re effective, thereby alleviating more costly treatment and rehabili tation in the future. To date, much of the research has provided only anecdotal support in favor of statements suggesting that early intervention is truly cost effective. Though studies of a national scale are being conducted (e.g., Hebbeler et al., 2001; Hebbeler, Spiker, Wagner, Cameto, & McKenna, 1999), additional data is necessary in order to provide a definitive conclusion supporting the programs efficacy. However, one must caref ully consider the fact that relative to early intervention, costs pertain to both the financial (e.g., expenses, salaries, materials) and human resources (e.g., hours of labor, number of persons required to achieve a goal) required to support the child within the time frame allocated by the IFSP. While most studies on Part C have failed to directly addr ess cost-benefit analyses, many of the studies were cost-effective in the longterm although costly in the shor t-term. The reason for this was that early intervention studies may have initially resulted in financial and human labor costs whose impact were reduced ove r time when the developmental gains of children receiving services were taken into account (Barnett, Pepiton, Bell, Gilkey,
38 Smith, Stone, Nelson, Maples, Helenbrook, & Vogel, 1999; Dunlap & Fox, 1999; English, Goldstein, Shafer, & Kaczmarek, 1997). In addition to cost-benefit c oncerns, Barnett, Bell, & Carey (1999) also noted that there are debates regarding who should be served under Part-C, how needs should be determined, and how children should be served (pp. 1-2). By virt ue of its own design, Part C has been open to inte rpretationthe federal governme nt stipulates the necessary components to include within the system but ot herwise allows flexibility in the way that states organize, implement, and administer the program (Hebbele r et al., 1999; Powell, Fixsen, & Dunlap, 2003). Others, such as Fox, Hanline, Vail, and Galant (1994) noted the debate among professionals using the model, identifying a high degree of disagreement between early intervention provi ders and educators in elementary schools with regard to their philosophi cal approach to educating youn g children. In contrast to professionals in early intervention who endorse developmentally appropriate practices (DAP), professionals in early childhood and elementary education adhere to a model that tends to rely on direct instruction rather th an ecological or antecedent-based approaches (Carta, Schwartz, Atwater, & McConnell, 1991; Fox, Hanline, Va il, & Galant, 1994). Finally, it should be noted that the broad scope of the early intervention model has been a limitation in some ways. Although its broad scope has allowed for the provision of a wide array of prevention and interventi on services, resulting problems have included both the practical difficulty in successfully c oordinating a wide range of services as well as the increasingly difficult task of defini ng early intervention outside of the legal terminology stated in its legislation (Jac ob-Hartshorne & Timm, 1998). Because the
39 terminology has defined the model relative to its benefits and purposes, a clearly operationalized definition remains elusive. Local Level Systems of Care for Children Birth to Three with Challenging Behavior Within Hillsborough County, Florida, the Childrens Board of Hillsborough County (CBHC) has served as a central agency in the local system of care for children and families with challenging behavior. Hill sborough Countys system of care is in its developmental stages, working to provide co mprehensive services and supports to the community with the eventual goal of emphasizing best practi ces for children from birth to the elementary school years (Childrens Board of Hillsborough County, 2002). In support of this goal, the CBHC articulated five empha ses in its 2012 Plan: 1. Funding for prevention services for the very young of the community; 2. The use of proven practices that have been successful; 3. Improving the capability of existing service providers; 4. Effecting practice and systems improvements in the community; and 5. Advocating for policy and funding strate gies to maximize the impact of limited resources (Childrens Boar d of Hillsborough County, 2002). Such focus is similar to that at the national level, where a greater emphasis has been placed on prevention in the preschool and early elementary years, as well as on evidencebased practices (U.S. Department of Education, 2001). A recent study of children birth to three found that over 1,600 children residing in Hillsborough County were identified with significant developmental delays warranting federally-funded support (Childrens Board of Hillsborough County, 2002). Similarly, a committee of parents and professionals conducted a study confirming such a finding, noti ng that several problems impacted the
40 countys capacity to provide supports to young children with challenging behavior, including lack of adequate, family-friendly information; lack of consistently-provided services; lack of capacity of existing service systems; lack of family-centered services; and lack of services that employ evidence-b ased practices (Grosz, Behal, Fernandez, Ureta-Mazilli, Graven, Boothby, & Marfo, 2000; Powell, 2002). In response to this concern, the CBHC em barked on two separate initiatives to address the needs of children and families w ith challenging behavior in the community. First, match-dollar funding was provided for the Early Intervention Positive Behavior Support project (EIPBS; Fox & Dunlap, 2002), a model demonstration program providing comprehensive services and suppor ts using the positive behavior support model (PBS; Koegel, Koegel, & Dunlap, 1996). Designed with the intention of serving 200 young children with challenging behavior an d their families, the EIPBS program has provided an array of services to resi dents of Hillsborough County, ranging from developmental screening and parent support gr oups to intensive home-based intervention and training for commun ity providers. Second, a coalition called the Hillsborough Coalition for Children and Youth with Special Needs was formed with th e intention of conduc ting a comprehensive analysis of the countys community-based se rvices and supports for children and young adults with special needs. Comprised of a diverse committee of parents, professionals, and community leaders, the Coalition collect ed a wealth of information using mixed methods, including mail surveys, focus groups, interviews, and GIS mapping techniques. Analyses yielded a number of important conc lusions specified by age range, including young children birth to three. Relative to th is age group, the Coalit ion found that parents experienced difficulty with the following:
41 1. Obtaining proper diagnosis from a pediatrician who was helpful; 2. Acquiring accurate medical information; 3. Entering and navigating th e system of care, with specific difficulties in learning about the system of care and obtaining necessary services; 4. Coordinating and schedu ling their childs care; 5. Balancing work and care for their child, including transportation to therapies; and 6. Obtaining support for themselves (Raffaele Mendez & Hess, 2003). Although the authors executed a comprehensive study of the needs of children and young adults with special needs in the community, additional research is ne cessary, particularly with young children with challenging behavior. The study yielded six trends identified specifically for children birth to three. Each trend deserves further investigation in order to further elucidate and articulate what type s of programmatic respon ses are required. In this regard, each of the identified trends refl ects only a surface-level discussion of what types of needs may exist within the local comm unity. Finally, it is important to recognize that the intention of this st udy was to address the general pop ulation of children birth to three. As a result, specific informati on pertaining to young children with challenging behavior was not available. Together, these two initi ativesthe EIPBS program, and the study conducted by Raffaele Mendez and Hess (2003)have sharpened not only the communitys understanding of its children but the way se rvices are delivered to young children with challenging behavior. Each proj ect informed the community of the magnitude of its need to provide comprehensive services and supports to young children. Ho wever, it is clear
42 that much work remains, particularly with respect to helping pare nts cope with the dayto-day challenges of raising a child with a disability and accessing services needed by the child and the family. Parent Perceptions and Experiences Associ ated with Their Ch ilds Disability It is hard to imagine the experiences of parents learning for the first time that their child has a chronic medical condition, developmental delay, or developmental disability. As Rocco, Metzger, Zangerle, and Skouge ( 2002) suggested, No one feels the pain of loss and broken dreams like a parent who has just learned that his or her child has a serious disability (p. 79). Similarly, Sca ndariato (2002) commented, I have heard that autism occurs in approximately four out of ev ery 15,000 births. The fact is, this statistic means nothing unless your child is one of the four (p. 245). While the impact of identifying a child has a disability is difficult en ough, children and families with disabilities are more often subject to isolation, stigma, or discrimination (Goffman, 1963; Oliver, 1996; Susman, 1994), further exacerbating the difficulty of the situation. Therefore, it is important to consider issues of disability and to recognize some of the perceptions and experiences pare nts have reported as they attempt to cope with their childs disability. In the following sections a review of the relevant literature on disability and social stigma was presented, followed by a summary and implications for young children in Hillsborough County, Florida. The Concepts of Disability and Stigma Often conceptualized as being limite d solely to ones biology, many have suggested that the term disability should be reconceptualized relative to a persons intellect, functional capacity, normality, and b eauty (Link & Phelan, 2001; Marks, 1999).
43 It is estimated that nearly 20% of the en tire population is disabled (Snow, 2003). As a result, the disability group has accounted for the largest and most inclusive minority group, crossing all cultures, races, and ethniciti es (Green, in press). Representing more than physical attributes, stigma has been described as more of a social phenomenon, consisting of multiple interrelated factors that combine to form an individuals holistic experience (e.g., personal attributes, power, social status, identity, opportunities for inclusion; Goffman, 1963; Link & Phelan, 2001; Marks, 1999). Similarly, some experts have suggested that the determination or asse ssment of ones disabi lity is as dependent upon attitudinal and environmental factors as the impairment itself (Barnes, 1996). Children and families with disabilities are burdened with the need not only to overcome the daily obstacles inherent to childhood but also are forced to overcome a host of additional obstacles, most of which pertain to social stigma and their ability to be included and integrated within society (G offman, 1963; Marks, 1999). Defined as an adverse reaction to negatively evaluate thos e who are different from oneself (Goffman, 1963), stigma is comprised of the convergen ce of interrelated components, including labeling, stereotyping, separation, status loss and discrimination together in a power situation that allows them manifest (Link & Phelan, 2001). Stigma is contextuallydependent not only relative to individual diffe rences but also to judgments of undesirable attributes, power and social status, and perceptions of id entity (Goffman, 1963; Link & Phelan, 2001). It is not surprising that most people have considered a disability synonymously with a need for help and/or social support. American society has tended to oversimplify and marginalize disability as being solely biological and devoid of environmental or
44 contextual factors (P riestley, 2003). To some degree, this explains why people with disabilities are often viewed as victims (Link & Phelan, 2001) or asso ciated with a label (Susman, 1994). However, it is equally cl ear that stigma is complex, existing along a continuum or spectrum. This means that the degree to which a person perpetuates a specific stigma (e.g., culture, disability) is depe ndent on the extent to which the stigma is perceived to be deviant from social norms (Link & Phelan, 2001; Marks, 1999). Stigma is contextually-dependentthat is, stigma is implicitly linked to pe rceptions of oneself and the groups who hold power and status with in a society (Marks, 1999) As a result of this perception, the severity of ones stigma is largely de pendent upon both the attributes of the individual rendering the judgment and the communitys ability to respect and appreciate individual differences. Relative to young children, the research on disabil ity and stigma has had important implications for young children with di sabilities and their families. There is consensus agreement among experts that disability is not solely limited to ones physical attributes or impairment. Rather, disabili ty is reported to be a complex phenomenon whose definition is individually and contextually defined rela tive to ones perceptions of their body, identity, culture, and social norms (P riestley, 2003). Given the fact that there is a well-known relationship between rates of challenging behavior and perceptions of isolation, ostracism, and stigma, the impact of a childs disability on his/her family becomes not only an issue of concern but a poten tial standard by which an intervention is considered effective (Park, Turnbull, & Tu rnbull, 2002; Turnbull, Turnbull, Wehmeyer, & Park, 2003). As a result, this area of re search has provided a m eaningful contribution to the field in its firm assertion that the experiences and perceptions of parents of young
45 children with disabilities are impor tant. It is the pe rception of parents and the family that, in large part, dictate a familys acceptance of their childs disability, as well as their ability to build upon the strength s of both the child and entire family in order to achieve meaningful outcomes. The Experiences and Perceptions of Parents of Young Children with Disabilities Building upon such findings, research efforts have been undertaken to further understand the experiences and perceptions of parents of children with disabilities. A review of this body of literature indicated that a wide array of studies within the field of mental health have been conducted, each w ith the intention of better understanding the experiences and perceptions of parents of children with di sabilities across a variety of contexts. For example, Abelson (1999) conducted a study addressing the impact of a childs disability upon the pare nts ability to earn mone y. Questionnaires addressing experiences, feelings, and perceptions about resp ite care were administered to a sample of 574 parents of children with deve lopmental disabilities. Chisquare tests were conducted, yielding statistically significant associations between: 1) The age of a child with a disability and parents refusing job opportunities or giving up a job in order to care for the child; and 2) the childs severity of disability and rates of pa rental absenteeism at work. (Abelson, 1999). The author repo rted that there was a relationship between a childs age, severity of disability, and their parents ability to ear n money. Not only did parents report missing hours of work, they also report ed having to refuse opportunities to work due to their childs need for continued suppor t and care, particularly for younger children and children with severe di sabilities (p. 881). Such information only confirms the
46 magnitude of stress that a ch ilds disabling condition may have upon the entire family system. In another study, Crossman and Adams (1980) conducted a study using a pretestposttest control group design assessing the degr ee to which preschool experience serves to negate the negative consequences of divorce and single-parent childrearing on childrens social and cognitive development. A randomly selected sample of 23 children ages 3 to 5 years participated in the i nvestigation, which included two experimental groupschildren from single-parent families (N = 7) and intact nuclear families (N = 8) receiving an 18-week preschool program, as well as a control group of children from intact nuclear families (N = 8). Measured outcomes include estimates of cognitive development using subscales of the Wech sler Preschool and Primary Scale of Intelligence and the Locus of Control Meas ure for Preschool Children, as well as interviews and rating scales documenting pare nt perceptions of social adjustment and challenging behavior. The authors conducted a series of one -way analyses of variance, with experimental and control group comparisons indicating children from single-parent families earned significantly higher scores on cognitive outcome measures after participating in the 18-week preschool program Results indicated that divorced mothers were less tolerant of their childs challenging behavior tend to engage in fewer interactions with their child and tend to repor t perceiving a greater de gree of anger than representative comparison and control groups (p 211). In spite of this data, however, the authors found that single parent mothers per ceived themselves as being both involved and effective in supporting their child through incidents of ch allenging behavior. Though
47 generalization beyond individual or groups of parents to othe rs cannot be assumed, such studies suggest that the presence of a ne gative life event alone does not necessarily determine the nature or quality of parent-child interactions. Similarly Scorgie and Sobsey (2000) interv iewed and surveyed 95 parents of children with disabilities in an investigat ion of the transformations by parents of children with a variety of disabling conditi ons (p. 198). The first phase of the study entailed conducting semi-structured interv iews with 15 parent s of children with disabilities. Interviews provi ded parents with oppor tunities to tell their own stories about an event and its impact on family life. In the second phase, 80 parents were asked to complete a 59-item Life Management Surve y. In both cases, parents were selected by agency staff who perceived that they had successfully managed stressful life events. Descriptive analyses were used to identify trends in both sets of data, with results indicating that many parents are positively transformed by their relationship with their child who has a significant disability (p. 204). Across both phases of the study, parents reported experiencing transformations in themselves (e.g., newly acquired roles and traits), their relationships (e.g., with family members, assuming roles as advocates, expanding networks of friends, attitudes toward people in general), and in the way that people view life (e.g., identifying what is trul y valuable or important, accepting others, making the most of each day). Suggesting th at transformational outcomes may prove to be the key to understanding personal and fam ily health in response to challenging life events," the authors found that though the challenges in thei r lives have been great at times, parents have not only merely coped successfully with them, but have experienced positive or beneficial outcomes (p. 198).
48 While such outcomes vary, what is most im portant is recognition of the fact that some families derive strength from dealing with a childs disability rather than facing disability as if it were a traumatic loss. Some parents reported that Ive had opportunities I never would have dreamed possi ble, being asked to speak at different conferences and share our story, while othe rs acknowledged that My child helped me discover a side of myself I never knew ex isted. I might have never broadened my horizons without this experience (pp. 200-201). Others remarked that Success is not how were perceived or how much we have, it s what we do with each day and with each person in our day (p. 203). Such findings le d the authors to concl ude that Parents and guardians are experiencing positive changes in their lives, changes many of them tell us would not have occurred apart from parenti ng a child with a disa bility (p. 204). Finally, it is important to recognize th e growing accumulation of parents who have made the effort to share their experien ces dealing with their childs disability. While some report that the experience of ra ising a child with a disability has had a positive, life-changing effect (e.g., Green, 2002; Turnbull, Turnbull, Wehmeyer, & Park, 2003; Whaley, 2002), others have reported experiencing a much greater struggle, including marital stress, isolation from fam ily and friends, changes in family demands, relentless demands, and despair when observing their child engage in self-injurious or dangerous behavior (e.g., Fox, Vaughn, Wyatte & Dunlap, 2002; Kayser, 2002; Markey, 2002; Maurice, 1993; Scandariato, 2002). Toge ther, studies documenting the experiences and perceptions of parents of young children with disabilities yield an important conclusion in that a family or caregive rs overall experience is contextually d ependent. While research has documented a host of fact ors that may place a family at risk for
49 continued stress, many parents and caregivers also report positive experiences dealing with their childs disability. Thus, it is of paramount importance to consider the ecological factors (e.g., individu al, micro-, exo-, and macrosystemic) that may impact a familys ability to improve th eir childs quality of life. Promoting parent involvement and collaboration. Within this body of literature, a growing body of evidence has emerged supporti ng the inclusion of parents as integral members of a childs support team, both relati ve to their perceptions and participation in their childs growth and development (B ailey, 2001; McConnell, 2001; Schwartz & Rodriguez, 2001). Moving away from a medi cal model toward a collaborative problemsolving framework, parents and caregivers are more frequently considered equals or are recognized for the expertise they have acquire d as parents and profe ssionals. Adopting a similar philosophical viewpoint Ferrell (1985) remarked: Experience taught me many things, such as : 1) that parents know their children better than any professional does, and 2) that stock phrases of reassuranceit will be okay, its just a phase, shell grow out of it, youre just going through shock/anger/guilt/griefreally dont mean a whole lot; and 3) that it really isnt very difficult to make a supposedly intelligent person feel small and worthless and insignificant simply by what you sayor dont sayto them (p.203). Not surprisingly, Ferrell and others emerge d calling for a greater degree of support for this approach. She concluded her discussion, arguing: As teachers, you would not hesitate to sh are information with a colleague. That colleague may or may not read the article you give to him or her, but that doesnt keep you from sharing it. Well, parents are our colleagues too, or should be, if we
50 really believe in parent involvement. They will decide when they are overwhelmed. They will decide whats interesting and valid to them. And believe it or not, they will read the article we copy, or not read the article, learn from it or not learn from it, accept the info rmation or not accept it, grow from it or notbased on where they are and not where the expert is! (p. 204). Similarly, Boulware, Schwartz, and McBride (1999) wrote in support of the use of the positive behavior support (PBS) model, largely due to the fact it incorporates a collaborative model that recognizes parents skill and expertise. The authors remarked: These strategies are not a simple cookbookthey do not tell you what to do for every child who has problems with transi tions, for example, but they do offer a framework for working with families to help them solve the challenging behaviors they experience at home and in the community (p. 39). Such findings were supported by the wo rk of King, King, Rosenbaum, and Goffin (1999), who articulated a concep tual model of factors influe ncing psychosocial outcomes for parents of children with disabilities, desi gned to help identify parent perceptions of family-centered, professionally-provided careg iving relative to th eir own well-being. Evaluating a number of variab les, including prognos tic indices (i.e., de mographic factors, disability parameters), professional caregivi ng, mediating variables (i.e., social-ecological factors, psychosocial life stress ors, & coping strategies), a nd outcomes (i.e., satisfaction with care, parent emotional well-being) (p. 43), the authors found th at parents reported a greater level of well-being when services were delivered in a family-centered fashion and addressed issues such as the availability of social support, quality of life, and overall family functioning (p. 51). Similar findings were reported by other researchers (e.g.,
51 Fake, 2002; Fox, Benito, & Dunlap, 2002; Pa lmer, Borthwick-Duffy, Widaman, & Best, 1998; Peck, Carlson, & Helmstetter, 1992; Rocco, Metzger, Zangerle, & Skouge, 2002; Williams & Hieneman, 2002), who found that parents of children with and without disabilities both reported positive perceptions of inclusive practices, particularly for children with mild to moderate disabilities. In addition to documenting the need to fo ster a collaborative atmosphere between parents and professionals, research has also addressed communication, another critical component impacting a familys ability to cope with their childs disability. For example, Barry and Singer (2001) conducted a study on the grief responses of parents whose newborn infants were admitted into neonatal intensive care units (NICU).. Recognizing the stressful circumstances a ssociated with NICU hospitalizations, the authors introduced a journal writing interv ention for parents to use as a means of communicating their experiences. The results were encouragingparents reported satisfaction with opportunities to engage in journal writing as they dealt with their childs traumatic events. Likewise, Singh (2003) interviewed a sample of 40 mothers of children with disabilities, finding th at 75% preferred daily comm unication with their childs classroom teacher, with 70% preferring it th rough the use of a written log (p. 171). Though both studies have entirely different foci, they illustrate an important point in that parents of children with disabilities may benefit from additional opportunities to communicate and share their experiences Given the fact that parents have often reported difficulties coping with daily demands levied by their children (Rocco, Metzger, Zangerle, & Skouge, 2002; Scandariato, 2002) communication is of the utmost importance in providing support to familie s of children with disabilities.
52 In summary, a review of the relevant literature documenting the experiences and perceptions of parents of young children with disabilities was provided The literature has shown that parents and families of young child ren with disabilities vary in the degree by which they accept and cope with their childs disability. However, it is also important to note that parents and families alike tend to report a preference for opportunities to engage in collaborative partne rships with professional caregi vers, as well as having open lines of communication. In the case of thes e preferences, parents reported a greater degree of satisfaction and/or a more positiv e experience supporting their child with a disability when one or both componen ts were available to the family. Collectively these studies provide an important contribution to the literature in that they together attest to the uniqueness of the parenting experience. While it appears that the experience of having a young child with a disability causes a predictable array of stressors (e.g., financial expenses, increas ed time demands, marital stress, social isolation), and that parents may report more positive experiences when given opportunities for both open communication and collaboration with professional caregivers, it is clear that each family c ontext is unique, deserving its own exploration and inquiry. Summary The purpose of this literature review was to synthesize the relevant research pertaining to the purpose of this study. In this regard, information was presented illustrating the ecological theoretical fram ework, documenting the significance and longterm course of challenging behavior exhi bited by young children, the systems of care (e.g., Medicaid, Part C) that serve childr en and families with challenging behavior,
53 including local efforts to provide comp rehensive behavior support services, and parent experiences and perceptions associated w ith the acceptance of a childs disability Relative to these areas of research, a number of important points were identified. First, the ecological viewpoint (e.g., Bronfenbrenner, 1974) has provided an optimal theoretical framework by which it may be possible to be tter understand the greater context by which a family functions. Second, findings from the National Early Inte rvention Longitudinal Study (Hebbeler et al., 2001) doc umented that the majority of young children eligible for Part C services enter the program at one of two points: prior to 12 months and after 24 months of age. Hebbeler and colleagues ( 2001) reported that more than 38% of all children entering the Part C program did so between birth and 12 months, while an additional 28% entered after their second bi rthday (p. 5). Third, and perhaps more importantly, the authors found the age of the chil d at the point of thei r first family support plan varied depending upon their inferred reas on for eligibility. On average, children considered at-risk of delay (8-9 months) a nd diagnosed with medical conditions typically received services at an earlier age (1 0-11 months) than children diagnosed with developmental delays (21 months) (pp. 9-11). Together, these data suggest that within the population of young children that require Part C services, there are distinct differences between children depending upon the degree to which they are considered atrisk, disordered, or delayed. Fourth, the recent study conducted by Raffaele Mendez and Hess (2003) identified a number of stressf ul circumstances specific to pa rents and caregivers of young children at the local level (i .e., Hillsborough County, Florida). In their study, the authors found that families reported that the following ev ents or circumstances were stressful: 1)
54 obtaining their childs initial diagnosis (as evidenced by reported fluctuations in the helpfulness of pediatricians); 2) acquiring accu rate medical information relative to their childs disability or diagnosis; 3) learning about the local system of care and obtaining services for their child; 4) balancing the pr essures of work and car ing for their child; and 5) obtaining necessary parent or family support (p. 9-10). Finally, the information conveyed in this literature review closely resembles many of the professional experiences of this re searcher working within Hillsborough County, Florida. After working with children a nd families of Hillsborough County, it is the professional opinion of this researcher that there are appreciable differences between parent perceptions and experiences when they first enroll in the Part C program before 12 months of age versus those who enter it after 24 months of ag e. As a result, the purpose of this study was to document the experiences of both groups of parents with children in Hillsborough County who exhibit challenging behaviorthose who first enrolled before 12 months of age and those who entered after 24 months. Qualitative Research Methods Qualitative research methodology was used to address the articulated purpose and corresponding research questions for this study. Though the speci fic methodology to be used has been presented at greater length in th e next chapter, it is appropriate to review and summarize some of th e literature on qualitativ e research methods. The National Research Councils Comm ittee on Scientific Principles for Education Research (Shavelson & Towne, 2002) reported among its set of fundamental scientific principles that methods are used that permit direct investigation of the question and that one must provide a cohe rent and explicit chain of reasoning when
55 conducting research (Shavelson & Towne, 2002). In the case of a great many studies, a combined positivist/ postpositivist perspe ctive and quantitative methodology is an appropriate match with the nature of a study s research questions. On other occasions, a more qualitative approach is necessary in order to further document and understand the experiences of others. Such an approach be tter allows the researcher to capture the individuals point of view, examine the cons traints of everyday life, and secure rich descriptions of ones experi ence (Denzin & Lincoln, 2000). Quantitative research has traditionally focused on the comparison of standardized scores, rating scales, and comparisons across participants with a focus on the representative sample and randomized selection of samples (Gall, Borg, & Gall, 1996). Survey studies have also been a popular m eans of obtaining data on issues such as attitudes, prevalence, and satisfaction. Though these may be useful to assess such concerns, an individuals uni que experiences cannot be captured using such methods, nor can it be inferred that experiences allo w for comparison. Similarly, Marshall and Rossman (1989) suggested that the following types of research questions most often lend themselves to a qualitative methodology: Research that delves in depth in to complexities and processes. Research on little-known phenom ena or innovative systems. Research that seeks to explore wher e and why policy and local knowledge and practice are at odds. Research on informal and unstructured linkages and processes in organizations. Research on real, as opposed to stated, organizational goals. Research that cannot be done experimentally for practic al or ethical reasons.
56 Research for which releva nt variables have yet to be identified (p. 57). Relative to this study, the re search questions driving the study investigated the relationship between human actions and the se tting or context by which they occur. Using a qualitative methodology, it becomes possibl e to obtain a much more detailed, indepth kind of analysis that would not otherw ise be necessary using quantitative methods. Unfortunately, qualitative studies remain uncommon within the field of EI/ECSE (Sandall, Smith, McLean, & Ramsey, 2002). A phenomenological approach makes it possi ble to qualitatively study how ones reality appears, rather than to objectively document the observable reality (Gall, Borg, & Gall, 1996). Phenomenology does not entail the use of induc tive reasoning; rather, phenomenological research involves the desc ription and illustration of ones lived experience (Van Manen, 1990). Using this qualitative method, this researcher used a semi-structured phenomenological intervie wing technique (Denzin & Lincoln, 2000; Marshall & Rossman, 1989) to f acilitate the opportunity for parents of young children with challenging behavior to tell their storyto share their experiences from the initial point where they learned their child was deve loping differently than other children to the present day. Phenomenology is the study of lived experiences and the ways we understand those experiences to develop a worldview (Marshall & Rossman, 1989). The phenomenological approach assumes that an individuals experiences can be structured and narrated to others. Conse quently, the purpose of the approach was to obtain an in-depth, explicit focus on the shared experiences of others. Given the subjective nature of qualita tive research, one mu st acknowledge the impact of the researcher as an active participant in the interview process. Following this
57 logic and rationale, it was anticipated that th is researcher would a ssume a passive role, where opportunities for interaction were mi nimized in favor of active listening and encouraging parents to tell their storyto s peak their voice (Rogers, 1993). However, in recognition of the fact that ones own values may bias subsequent data analyses, an epoche was conducted (Gubrium & Holstei n, 1997). Using an epoche, it becomes possible for the researcher to identify hi s or her own philosophical orientation and acknowledge the experiences and values that are used to make judgments of ones own experience. In this exercise, this researcher provided a full written description of his personal experience relative to the research topic, there by bracketing or containing personal experiences from interview and affordi ng the researcher to gain clarity from his own preconceptions (Marshall & Rossman, 1989). Such an exercise was conducted prior to the initiation of the study in order to acknowledge any predis positions and values that may influence subsequent data interpretation and analysis. Upon completion of the interviews, data were organized and analyzed according to typically reported qualitativ e data analysis procedures, such as those outlined by Marshall and Rossman (1989): 1) organizing th e data; 2) generating categories, themes, and patterns; 3) coding the data; 4) testing the emergent understandi ngs; and 5) searching for alternative explanations (p. 152). Simila rly, Frechtling & Sharp (1997) offer a set of guiding questions for use in dr iving the analysis: What patterns and common themes emerge in responses dealing with specific items? How do these patterns (or lack th ereof) help to illuminate the broader study questions?
58 Are there any deviations from these pattern s? If yes, are th ere any factors that might explain these atypical responses? What interesting stories emerge from the responses? How can these stories help to illuminate the broader study questions? (p. 4-2). It was anticipated that such guiding ques tions, posed in reference to the proposed research questions of the study, would cont ribute to the organizing and subsequent understanding of the experien ces and perceptions of pa rents of young children with challenging behavior. In summary, qualitative studies can be a rich source of information documenting how an individual understands and communicates his or her experien ce. The qualitative approach offers participants the opportunity to continue to add what they want to share over time, whereas quantitative methodology for ces researchers to make inferences on their data at that moment in time. Perhap s most importantly, the qualitative approach offers the opportunity to further understand the experiences of families by seeking out themes for the specific population being studied instead of forcing specific themes that may not be relevant (Denzin & Lincol n, 2000). Based upon such information, the researcher elected to use quali tative methodology in order to id entify a number of themes that either expanded upon those identifie d by Raffaele Mendez and Hess (2003) or represented a new contribution to the local community.
59 Chapter Three Methodology Purpose The purpose of this study was to document the experiences of parents of young children with challenging behavior living in Hillsborough County, Florida. Using an ecological framework, emergent themes were reported, thereby allowing participating parents to both share their stories and to pr ovide case illustrations about the obstacles and supports encountered in the process of naviga ting through the local system of care. The following research questions were proposed for this study: 1) What are the experiences of parents ob taining services for young children with challenging behavior living in Hillsborough County, Florida? 2) What types of protective fact ors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents or guardians to positively influence the experiences of young childre n with challenging behavior living in Hillsborough County, Florida? 3) What types of risk factors (i.e., micr osystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are percei ved by parents or guardians to negatively influence the experiences of young childre n with challenging behavior living in Hillsborough County, Florida?
60 Theoretical Framework A phenomenological approach (Seidma n, 1998) was used to document and examine the experiences of the participants of this study. According to Gall, Borg, and Gall (1996), phenomenology is defined as the study of the world as it appears to individuals when they place themselves in a st ate of consciousness that reflects an effort to be free of everyday biases and beliefs (p. 600). As noted by Marshall and Rossman (1989), the purpose of the phenomenological appr oach is to describe the meaning of a concept or phenomenon that several individuals share (p. 112). Using such a model, this researcher was able to learn more about each participants past and present-day experiences as they are shared. While tim e consuming, the phenomenological approach offered the advantage of permitting both a focus of the researchers personal experience, as well as the deep, lived meanings of the interview partic ipants (p. 113). Measurement A semi-structured interview utilizing open-ended questioning was used in this study. Semi-structured interviewing involves as king a series of structured questions and then probing more deeply using open-form questions to obtain additional information (Gall, Borg, & Gall, 1996). Using a semi-str uctured interview format, it was possible for this researcher to consistently pose a series of questions across participants while maintaining the ability to ask follow-up probe questions to allow for elaboration and content saturation. In the case of this st udy, a single, open-ended question was asked to parents, prompting them to tell their story to this researcher. Please see Appendix A for the specific interview protocol.
61 Procedure Step 1: Participant Recruitment and Sampling The first step of this study was to recr uit and obtain consent from participants selected for the study. Purposeful sampling procedures were utilized in this study (Sandelowski, 1995). Accordi ng to Sandelowski (1995): In qualitative research, even ts, incidents, and experiences, and not people per se, are typically the objects of purposeful samp ling. People are certainly central in all kinds of inquiry approaches in the hea lth sciences, but they enter qualitative studies primarily by virtue of having dire ct and personal knowledge of some event (e.g., illness, pregnancy, life transition) that they are able and willing to communicate to others and only secondarily by virtue of demographic characteristics (e.g., age, race, sex) (p. 180). With respect to this study, Sandelowskis remarks are salient in that they provide an important differentiation between conve nience and purpose. Participants were not selected merely due to conv enient availability or willingness to participate. Likewise, pare nts or guardians were not as ked to participate if their child does not have challenging behavior. Rather, parents or guardians were intentionally or purposefully selected based on the criteria that their child demonstrates challenging behavior and has obtained some sort of services and/or supports from the community. From a conceptual standpoint, purpo seful sampling allows one not to compare but to obtain a diversity of voice, the unit of analysis for this study. The use of the purposeful sampling procedure was to create a sample of information-
62 rich cases described by parents of yo ung children with challenging behavior, whose voices incorporated the racial, ethni c, and cultural diversity inherent to Hillsborough County, Florida. Combined w ith the inclusion of both parents or guardians of children with challenging behavior who initia lly obtain Part C services before 12 months and parent s or guardians of young children with challenging behavior who obtain Part C services be tween the ages of 24-36 months, the purposeful sampling procedure provided a greater opportunity for this researcher to identify issues of centr al importance pertaining to the proposed research questions. Consequently, a sample size of 6 to 10 part icipants selected using purposeful sampling was anticipated in order to adequately sample a group of parents or guardians whose voice may be similar to other parents or guardians in Hillsborough County, Florida. A final sa mple of eight parent participants was obtained. Such a sample size allowed for adequate saturation of information, where repetitive themes ar e supported with interview information obtained across a diverse sample of partic ipants (Seidman, 1998). With respect to recruitment, participating parents or guardians were selected from three sources: 1) the entire sample of parents or guardians whose child was either enrolled in the EIPBS program or on its wait list; 2) parent s or guardians whose child was receiving services and supports provided through the Infant s and Young Children of West Central Florida (IYC); and 3) parents or gua rdians whose child wa s receiving services and supports through the Florid a Diagnostic Learning Resources System (FDLRS). In addition to the latter two sources, the Early Interventi on Positive Behavior Support (EIPBS) program is a unique resource for parents in Hillsborough County, Florida.
63 Children eligible for Part C services who al so presented with chal lenging behavior were also deemed eligible to receive comprehe nsive services and supports through the EIPBS program. Training, coaching, and technical assistance are provided to parents and caregivers with the goals of both enhancing th e childs social and emotional skills and reducing rates of challenging behavior. Th e EIPBS program also features a parent education and support group, which provides an overview of the positive behavior support (PBS) process and teaches many of the specific skills required to successfully implement PBS intervention plans. Written contact Initial contact for prospective participants in the EIPBS program was established in writing, thr ough a flyer disseminated to all parents or guardians. In order to ensure confidentialit y, copies of the flyer were mailed by the EIPBS director. With respect to both IYC and FDLRS, cont act was established either by disseminating the flyer through IYCs Family Resource Specia lists/ FDLRS Parent Liason Coordinator or through personal contact by this examiner with parents or guardians attending the IYC/FDLRS-sponsored New St ar Training sessions. Pl ease refer to Appendix B for the flyer for participant recruitment. Telephone contact. Interested parents or guard ians voluntarily contacted this researcher to further discuss their participa tion in this study. During this contact, the researcher explained the studys consent, c onfidentiality, financial incentives, and data collection procedures to each potential par ticipant in greater detail (e.g., number of interviews, anticipated interview duration of 45 to 60 minutes, the use of audio taping and transcription). In addition, this contact provided this resear cher with the opportunity to ask questions linked to several screening criteri a. Using these criteria, this researcher
64 was able to purposefully refine the sample of potential participants into the final sample of eight parents or guardians. Criteria for the study were assessed using a family demographic data form (Appendix C). The first criterion involved the participant s primary language. Given the fact that this researcher is a mono-lingual English sp eaking individual, selection was limited to participants fluent in Englis h. The second and third criteria involved the age of the child and the presence of challenging behavior. Par ticipating families were required to have a young child age three who demonstrates challeng ing behavior (i.e., up to three years, 11 months, 30 days). Similarly, the young child had to demonstrate a level of challenging behavior that was perceived by pa rents or guardians to interfe re with or is at risk of interfering with optimal learning or engagement in prosocial interact ions with peers and adults (Powell, Fixsen, & Dunlap, 2003). However, pare nts or guardians who were either receiving or on the waitlist to receive EIPBS services and supports automatically met these two criteria, based on the programs own inclusion criteria. The fourth criterion pertained to history of previous contact with this researcher. During the previous year (i.e., July 2003 to July 2004), this researcher served as an evaluator in the Tampa Regional Early Interv ention Program, and in this capacity, both determined Part C program eligibility and referred families to the EIPBS program for services and supports. In the event that a pa rent or guardian had pr evious professional contact with this researcher prior to the in itiation of this study, efforts were made to ensure their exclusion as a matter of both avoiding a potential conflict of interest and maintaining objective data collection.
65 The final set of inclusion criteria pertained to demographic characteristics of the interested parents or guardians. In order to ob tain a diversity of voice consistent with the residents of Hillsborough County, Florida, i ndividual participants were selected for inclusion using purposeful sampling. Asking parents a list of demographic questions during their telephone cont act, this researcher in tentionally selected a set of participating parents or guardians who varied in their racial, ethnic, cultural, and demographic characteristics but shared the commonali ty of caring for you ng children who have challenging behavior. In addi tion to these criteria, partic ipants were only considered eligible if they were a resident of Hill sborough County, Florida for over 12 months. The latter criterion enhanced the likelihood th at the experiences reported reflected the experiences of families living with in the same geographic region. Participants who met the studys criteria were asked to provide verbal commitment to participate in two interview c ontacts, the first of which were scheduled at that time at a location of the participating parent/guardian s convenience. Participating families were also invited to meet at the Univ ersity of South Florida College of Education in the event that a lo cation conducive to interviewing was not identified. In the event that the number of interested families exceeded th e sample of this study, the first 10 families who met the eligibility requireme nts of this research study were selected for participation. Those who did not meet this studys criteria we re thanked for their time. Please refer to Appendix D for a copy of the informed consent. Participation Stipends Given the fact that pare nts/guardians volunteering to participate in this study were asked to both share personal information and make arrangements to spend time with this resear cher, participating parents/guardians were
66 provided with a $50 cash stipend as a token of appreciation. Funding of up to $500 was secured via the Family Involvement Funds Plan of the Tampa Area Infants and Toddlers Early Intervention Program. Funded through the state of Floridas Childrens Medical Services Early Intervention Program Office, the Family Involvement Funds Plan is designed to provide a wide vari ety of opportunities for famili es to attend and participate in trainings, meetings, and other activities to enhance the EIP experience for families in the program and also for other families who may benefit indirectly. Administered by Infants and Young Children of West Central Fl orida, Inc., the funds available through this plan were used solely for the pur pose of compensating parents/guardians who participate in this study. Step 2: Bracketing Interview Before data collection was initiated, this researcher conducted a bracketing interview (i.e., epoche). According to Marshall and Rossman (1989), phenomenological researchers are required to write an a priori description of their own experiences thereby allowing them to bracket thei r experiences from those of the studys participants. The authors noted that the purpose of this self -examination is for the researcher to gain clarity from his own preconcep tions, and it is part of the ongoing process rather than a single fixed event (p. 113). In support of this need, Jane sick (2000) offered a model for bracketing that was used in this study. Th e following steps were recommended for use in the process of bracketing: 1. Locate within the personal experien ce or self-story, key phrases and statements that speak directly to the phenomenon in question; 2. Interpret the meanings of these phrases as an informed reader;
67 3. Obtain the participants interpretation of these findings, if possible; 4. Inspect these meanings for what they reveal about the essential, recurring features of the phenomenon being studied; 5. Offer a tentative statement or definition of the phenomenon in terms of the essential recurring features id entified in Step 4 (p. 390). The bracketing interview is located in Appendix E. Step 3: Interview Data Collection Consent. Prior to engaging in the interview process, interested participants were required to sign a University of South Fl orida Institutional Review Board informed consent form (see Appendix D) as well as prov ide verbal commitment to participate in a second interview contact. Participants were informed that data collection would consist of semi-structured interviews, but were also invited to shar e any written information (e.g., pertinent reports and medical records) they felt would potentially add to the data collection. Participants were likewise informed that all wri tten information and interview transcripts were coded by number and stored in a locked fi ling cabinet as an additional measure of protecting confiden tiality. Per the participants preference, signed copies of informed consents were either mailed or pr ovided at the time of the second interview contact. Interviews. Using the interview protocol located in Appendix A, this researcher conducted a semi-structured interview w ith each participant using open-ended questioning. While the interview was conduc ted, this researcher also completed a checklist of topic domains discussed by each participant (e.g., diagnosis; pregnancy, labor, and neonatal course; stressors associat ed with obtaining support; impact on family
68 members; Part C services and supports; preschool or daycare experiences). The specific content included in the checklist was determin ed by participant res ponses from the pilot study, which has been described in the next se ction. Upon completion of the interview, a second follow-up interview was scheduled with e ach participant. E ach initial interview lasted an average of 67 minutes, with followups lasting an average of 48 minutes. The average total length of the two interviews combined was 116 minutes. Interviews were audio taped and tr anscribed using a procedure called shadowing (Newman, 2002). Using this proc edure, this researcher played back a segment of the audio taped interview, paused th e tape, and then dictated the text verbatim into a computer using Dragon NaturallySp eaking 6 voice recognition software. Dictating each interview in its entirety consequently allowed this researcher to create a series of unabridged transcripts. At the beginning of the second meeti ngs, audio taping and timing resumed. Following a specific theme verification intervie w protocol (Appendix F) this researcher began by presenting a sample of representative transcript segmen ts from the transcript of the interview. The participan t was asked to review the quotes and make any changes they wish. Upon completion of that task, this researcher presented the checklist of topic domains completed during the interview, show ing the participant the list of the specific discussion topics addressed previously. At that time, the participant was provided the opportunity to discuss any topi c that was not discussed durin g the previous interview. Once again, this researcher completed the checklist of topic domains over the course of the meeting. Upon completion, the participant was thanked for their time and received a financial incentive of $50 for their participation.
69 Using the same transcription procedure, this researcher transcribed the second meeting. The transcript from the second interv iew was attached to the transcript of the interview, thereby creating a master unabridged transcript for the participant that was subsequently analyzed relati ve to the stated research questions. This process was conducted with each part icipant in the study. Step 4: Credibility Upon completion of each interv iew, the researcher read each transcript in its entirety and identified salient themes that are reported. Followi ng the recommendation of Patton (1990), a chain of evidence was maintained with each transcript segment, so that evidence could be traced back to the specific participant, tr anscript page, paragraph, and line in which it appeared. Following such a procedure, it was possible for the researcher to select transcript segments representing emergent themes from each transcript. Representative transcript segments were presented to each participant in a second meeting with the researcher to verify each transcripts accuracy. At that time, participants were encouraged to make any additions, changes, or deletions to their transcripts in order to ensure that their e xperiences are told with as high a degree of integrity and free of the resear chers bias as possible. Following the second meeting, the research er made changes to each transcript exactly as indicated by the participant. This process was held constant across participants, thus enhancing the studys ove rall credibility and structure. Lists of thematic assumptions and subcategories are located in Appendix I. Pilot Study. Prior to engaging in the proposed data collection and credibility procedures, it was necessary to first conduct a brief pilot study in order to ensure both the
70 integrity of the data collection process, as well as the credibility of the resulting data. Following this rationale, a set of interviewing procedures were pilot tested on the first three participants. Using the same selec tion and credibility procedures as stated previously, this researcher conducted audio taped interviews in the accompaniment of a member of his doctoral committee who has extensive experience conducting qualitative research (i.e., Dr. Nesman). This researcher and the doctoral committee member collaboratively developed an in terview protocol for use in this study, which is located in Appendix A. Using the shadowing transcription proce dure, this researcher transcribed each interview in its entirety and reviewed the resu lting transcript with Dr. Nesman. Together, this researcher and Dr. Nesman assessed the average length of the interviews, and evaluated the wording of the interview protocol relative to the information provided in the transcript. In addition, this researcher and Dr. Nesman created a checklist of topic domains from the three sets of transcript s obtained in the pilot study (e.g., diagnosis; pregnancy, labor, and neonatal course; stre ssors associated with obtaining support; impact on family members; Part C serv ices and supports; preschool or daycare experiences). Upon approval of the doctoral co-chairs, the resulting checklist was used with all remaining participan ts to further identify them es emerging from the data collection process. At the beginning of the second interview, audio taping and timing resumed. This researcher began by presenting a sample of re presentative transcript segments identified in collaboration with Dr. Nesman. This res earcher and Dr. Nesman asked the participant to review the quotes and make any changes they wished. Once again, the same interview
71 procedures were followed as stated previously. Upon completion of the interview, the participant was thanked for their time and re ceived a financial incentive of $50 for their participation. This researcher transcribed audiotapes from the second interview and presented the results of the pilot study to both the doc toral committee co-chairs (i.e., Drs. Keller and Raffaele Mendez) and Dr. Nesman, wh ich included the interview protocols, transcripts, samples of representative quotes, and duration measurements of each interview for each partic ipant (i.e., first and second intervie ws). Together, the team made necessary changes to the inte rview protocol and data colle ction procedures before the remaining data was collected, and decided whet her the data obtained in the pilot phase of the study would be included within the final sample Based on a combination of faculty observations of this researchers performan ce, the degree that data collection was kept consistent, and that the information obtained appeared relevant to the studys research questions, the doctoral committee elected to include the data from the pilot study in the final sample of this research study. Saturation. In addition to discussing the pilot study data, this researcher also consulted both the doctoral committee co-chair s (i.e., Drs. Keller and Raffaele Mendez) and Dr. Nesman regarding saturation. Saturation refers to the point in data collection in which new themes are no longer reported by parent participants (Denzin & Lincoln, 2000; Strauss & Corbin, 1990). With this co ncept in mind, this researcher continued collecting data until responses from parent par ticipants were judged to reach saturation. This researcher estimated that saturation had been achieved after interviewing eight parents of seven children. At that point, this researcher consulted with Drs. Keller,
72 Raffaele Mendez, and Nesman, providing complete transcripts for each participant and sharing specific quotes to illustrate commonality and similarity across participant reports. Discussing these data further, the team agreed that data collection reached a point where subsequent interviews were estimated to a dd little additional information to the data which had already been collected. Step 5: Data Analysis Unabridged transcripts were analyzed in a systematic, sequential, and verifiable process (Krueger & Casey, 2000). Systema tization was ensured through the use of a sequential data analysis pro cess that was both documented a nd clearly stated. Likewise, data analysis was verifiable through a clear chain of evidence (Pat ton, 1990) that could be traced back to its orig inal transcript location. In order to facilitate this goal, analys is strategies outlined by Krueger and Casey (2000) were followed. All tran scripts included the participan ts initials, date, and page numbers such that each segment of text could be verified. Two copies of each transcript were kept, one intact, and a second for organizi ng into thematic categories (pp. 132-137). With respect to the latter, transcripts were also color coded with markers to facilitate identification of each specific transcript. C oding was ensured through the use of multiple color-coded vertical lines draw n down the left margin of the paper. This allowed the researcher to cut individual segments of text from its original transcript when creating thematic categories. Thematic categories were created using f lipchart paper and indi vidual segments of text cut from transcripts. Cut segments were anchored onto individual sheets of flipchart paper, each sheet representing a separate cat egory corresponding to systems articulated in
73 Bronfenbrenners ecological theory ( 1979, 1986; microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemi c). In addition, categories were coded relative to whether or not segments represent either risk or protec tive factors perceived by parents or guardians. Transcript segments were coded as risk or protective factors as well as to their respective ecological level, both as reported by experts in the field (i.e., Huffman et al., 2001). Once transcript segmen ts were organized into their respective categories, the researcher wrote descriptive summaries of each category, describing what was reported by the participants. In addition, a second person (i.e., a graduate student trained in qualitative research methodology) also analyzed the data as de scribed above, serving to cross-check and validate the categories identified by this research er. In the event of a disagreement, this researcher and the graduate student traced ba ck the segment of text to its original transcript and determined the appropriate category after conducting a more thorough review of the transcript a nd context in which the comment was made. This additional procedure was selected as an additional mean s of ensuring the rigor of the methods used in this study. Finally, the findings of each particip ant interview were summarized and described. Efforts were made to present ea ch participants comments in as simple a manner as possible in order to accurately communicate each parents voice. In other words, quotes were not framed with value-la den judgments (e.g., (Participant) described her experiences with a provide r who appeared to be acting in a rude and unprofessional manner. She got upset, yelled at him, and said). Indivi dual quotes were intentionally
74 reported in as simple a fashion as possible (e.g., (Participant) described her experiences with (provider). She reported). Once described, the data were summarized and described for the entire group of participants. Analyses were conducted us ing the model of analysis supported by LeCompte (1999). LeCompte offered a four-tie r model of analysis: 1) item-level; 2) pattern-level; 3) structural-l evel; and 4) interpretation. For the purpose of this study, item-level analysis pertained to the three re search questions posited by this researcher, while pattern-level analysis described trends and linkages identified across participants relative to each resear ch question. Structural-level an alyses addressed patterns of relationships across participants into groups of risk and protective factors, whereas interpretation focused upon describing the st ructures within the ecological paradigm. Analyzing the data in this fashion allowed this researcher to test emergent understandings and search for alternative explanations, wh ile taking personal biases documented in the bracketing interview into account
75 Chapter Four Results The results of this study have been presented in terms of the themes, risk factors, and protective factors that emerged from the an alysis of participant interview transcripts. Data were analyzed relative to Bronfe nbrenners ecological framework (1986; 1999). Participant Demographic Information A total of eight parents participated in interviews discussing seven children. Demographic information describing each fam ily participant and child are presented in Appendix G. A participant sample wa s obtained using the purposeful sampling procedures and inclusion/exclusion criteria discussed in Chapter Three. Using these procedures, a sample of pare nts were obtained with the intention of reflecting the diversity of voices existing w ithin Hillsborough County, Florida. Parents volunteering to participate in this study differed relative to th eir relationship to the child, race/ethnicity, educational background, occupation, and SES (e stimated by zip code). Similarly, child participants differed relative to the age at the time of the interview, the age when concerns were first noted, the age at the time of eligibility evaluation, gender, race/ethnicity, medical/developmental conc erns, types of challenging behavior, and services received. With respect to the parent participants, eight people were interviewedsix mothers, one father, and one grandmother. Five of eight parents were married (63%), and three reported that they were single (37%). Four (50%) parents
76 characterized their race/ethni city as African American, whereas the other four (50%) described themselves as Caucasian. The aver age educational attainment of the parent participants was 14 years (range = 12-18 y ears). Likewise, occ upations ranged from paraprofessional to professional. One parent re ported that she was disabled at the time of the interview. Families also varied relative to socioeconomic status. Six different zip codes were represented in the final sample of seven families. Five boys (71%) and two girls (29%) were discussed in this study. The average age at the time of the interview was 36 (range = 25-43 months). Similarly, concerns were first identified at an average age of 15 months (range = 0-36 months), whereas the average age at which the children were eval uated was 32 months (range = 20-39 months). With respect to specific diagnoses, a wide degree of variability was reported, including both medical (e.g., asthma, bronchitis, otitis media, eczema, ventricu lar septal defects, gastro esophageal reflux) and developmen tal diagnoses (e.g., developmental delay, speech delay, developmenta l language disorder, Williams Syndrome, pervasive developmental disordernot otherwise specifi ed). In addition, each child exhibited a wide array of challenging be haviors including: self-inj ury, noncompliance, tantrums, excessive crying, feeding difficulties, property destruction, biting, screaming, hitting, stuttering, scratching, throwing objects, dropping to the floor, and jumping off high platforms. The seven children in this study received a variety of services and supports. Specific services and supports reportedly included speech therapy (n = 3; 43%), occupational therapy (n = 1; 14%), physical th erapy (n = 1; 14%), ea rly intervention (n = 2; 29%), pharmacotherapy (n = 4; 57%), and a behaviorally-oriented parent support
77 group (n = 1; 14%). In addition to these services, one child was on a waitlist for an eligibility evaluation for pres chool exceptional student educat ion services (n = 1; 14%), one awaited an appointment for a speech th erapy evaluation (n = 1; 14%), and one was on a waitlist of services provided by the Early Intervention Positive Behavior Support (EIPBS) program (n = 1; 14%). Participant Descriptions The seven children who participated in this study have been individually described below. The pseudonyms used to protect the childrens identities were personally selected by their parent(s). Participant One: Bri Bri is a 39 month-old girl of African Am erican ethnicity diagnosed with speech and developmental delays and asthma. Accord ing to Bris mother, Bri was the product of a high risk pregnancy (materna l hypertension). Bri was born five to six weeks early via C-section and was diagnosed with asthma at approximately six months of age. At 18 months, Bris mother reported that her la nguage stopped, and at 24 months, she seemed to have stopped learning. Enrolled in dayc are, Bris mother reported that she began to withdraw and avoid socializing with other kids. Bris beha vior soon deteriorated (e.g., noncompliance, self-injury, tantrums, excessive crying). Finally, Bri received a speechlanguage therapy evaluation, with results indi cating that Bri was f unctioning at the level of an eight month-old (at a pproximately 36 months). S hortly after, Bri visited a neurologist to rule out the presence of seizures (r esults pending). A behavioral intervention specialist suggested Bri might have autism, and doctors provided conflicting opinions as to whether or not she may have attention-deficit-h yperactivity disorder
78 (ADHD). Compounding the issue further, Bri required treatment fo r both allergies and asthma. According to Bris mother, she ca nnot spend time either outdoors or in the public without risking allergic reactions. Despite such uncertainty, Bri has been determined eligible to receive services provided through the School District of Hillsborough Countys Early Exceptional Learni ng Program (EELP). At the time of evaluation, Bri earned test scor es suggesting that she was de veloping at a 24-month level at 36 months of age. Bris medical and developmental concerns have placed a great deal of stress upon her family. Bris father repor tedly paid child support but did not spend any time with her, placing further stress on both her mother and mate rnal grandparents. Fo rced to prioritize Bris needs over work demands, Bris mother experienced difficulties obtaining promotions and has been penalized for taki ng too much time off from work (including maternity leave). As a result, Bris mother was been forced to re ly on the support of her parents, who themselves raised a child with special needs. Financially, Bris mother acknowledged that she is a single parent and has struggled with the many expenses inherent to raising a young child with chal lenging behavior. Br is mother reported concerns with obtaining health insurance fo r her, finding high-quality and affordable daycare, balancing her career as an admini strative assistant, and planning to someday return to school. Despite such difficulties, Bris mother was able to get help for her. Bri has received supports provided by a behavior specialist in the community. Bris mother reported that this was very helpful, as the professional provided a wealth of ideas, made accommodations to visit the family on the weekend, and offered to help select
79 developmentally-appropriate books and toys. Combined with the help of the behavior specialist and upcoming enrollment in the EELP program, Bris mother is optimistic and committed to help her daughter continue to grow. Participant Two: Grace Grace is a 35 month-old girl of Caucas ian ethnicity diagnosed with Williams Syndrome. According to her mother, Gr ace had experienced a number of medical concerns at a very young age. Grace was the product of a compli cated pregnancy, labor, and neonatal course. Her pare nts had reportedly experienced fertility issues and several miscarriages prior to Graces birth. Grace s mother was induced, and after a painful delivery, Grace was born weighing 5 pounds, 13.4 ounces. Her parents were soon notified that Grace had two ventricular septal defects (i.e., small holes in her heart), as well as an elevated billirubin count, requiring an extended stay in the neonatal intensive care unit (NICU). At their first checkup, Graces parents found out that she had a problem with her hip sockets, and was hospita lized for six days with a kidney infection soon after. Graces parents re ported that she was colicky an d they suspected concerns with her development well before 12 months of age. Graces mother claimed that, none of the books were helpfulnone of it was her, and I kept reading the same chapter over and overwaiting for her to get to the ne xt chapter and nothing happened. After a second kidney infection, Graces parents elected to take their daughter to a geneticist and were abruptly told that she had Williams Syndrome. According to Graces parents, the way by which both the evalua tion was conducted and the diagnosis was rendered was irresponsible. The doctor reportedly diagnosed Grace based upon her physical characteristics alone rather than aski ng questions of her parents. The geneticist
80 then reportedly told Graces parents that sh e would have limited intellectual functioning. Leaving the appointment with a diagnosis that was yet to be formally confirmed with the genetic panels that were ordered, Graces parents requested additional information on Williams Syndrome, only to receive an illegi ble portion of an article in the mail weeks later. Approximately three weeks later, Graces parents received a telephone call from the geneticists assistant to confirm that the diagnosis was positiveGrace had Williams Syndrome. In addition to the associated physical symptoms inherent to Williams Syndrome, Grace also exhibited several ch allenging behaviors, including feeding difficulties, self-injury, property destruc tion, biting, tantrums, and screaming. Graces parents primarily learned about th eir daughters genetic condition through a combination of internet research and dire ct experience with Grace. Graces parents commented that they typically knew more about their daughters condition than the pediatricians that saw Grace for routine pe diatric care. After repeating the same information over and over again, Graces mother created a sheet of paper containing all of Graces essential medical and devel opmental information on it, which was subsequently provided to every medical professional that the family came into contact. Graces parents have faced a number of challenges obtaining services and supports for Grace (e.g., oral motor feeding therapy, physical therapy, speech-language therapy, and early intervention). Despite he r eligibility for such services through the early intervention program, Graces parents re ported experiencing continual difficulties obtaining proper authorizations for services, requiring her mother to adopt an advocacy role for her daughters well-be ing. Grace continued to receiv e services through the early
81 intervention program at the time in which her mother was interviewed. Grace also attends preschool in a facility located at her mothers place of employment. Compounding the difficulties associated with raising Grace was the fact that Graces mother reportedly has Dissociative Identity Disorder, and requires a considerable amount of time and therapy to help manage her own needs (e.g., sleep deprivation, therapy appointments), particularly in times of stress. Despite such difficulties, Graces mother reported that she feels supported by her husband and extended family (i.e., maternal and paternal grandparents). Now that Grace and her family have connected with the Williams Syndrome Association, the fa mily reported that they feel a sense of community with other families, and have remained focused upon their daughters many strengths. Participant Three: Darnell Darnell is a 39 month-old boy of African American ethnicity who has been both diagnosed with eczema and suspected delays with his speech and language. Darnell was reportedly diagnosed with severe and chronic eczema at 10 m onths of age, of which the symptoms were exacerbated after moving to the Florida climate. According to Darnells mother, he routinely experienced pain so in tense that he would cry, try to speak, and eventually stammer while screaming. Darnel ls skin color has reportedly changed as the result of frequent and severe episodes of scratching and itching. A host of medications were attempted, many of which were either very expensive to adequately manage Darnells condition or became weaker due to repe ated use. Darnells mother continues to struggle to find medical treatment for her son. For example, Darnells mother had reportedly received conflicting medical in formation and advice, and her sons
82 pediatrician has shied away from discussing whether the severity of his dermatologic condition may have led to subsequent delays with his speech and language development. Darnells mother indicated that her son s chronic needs have placed a great deal of stress upon her family. Darnell often become s so frustrated that he frequently engages in challenging behavior (e.g., tantrums, sc reaming, hitting, noncompliance, property destruction, withdrawal). The family was already under a great deal of stress, as her husband was laid off and forced to move to Fl orida to take a job at a lower salary. The family continues to rely on one income, despite th e fact that they are a family of five (i.e., mother, father, Darnell, older sister, younger sister) and have several routine appointments to coordinate to s upport their childrens needs. The family is also isolated (i.e., Darnells mother does not drive), and hi s needs have reportedly had an impact upon the entire household. Darnells needs had become so chronic, intense, and expensive that he has limited exposure to the outdoors, requ iring his mothers constant attention, and likewise preventing her from enrolling both her son and older daughter in daycare, furthering her education (i.e., she had hoped to take courses at the local university), or from working to help supplement her husbands salary. Looking toward the public school system for assistance, Darnells parents recently took him to a developmental screen ing. Despite the fact that a screening represents a preliminary step towards obtaining services, Da rnells family was under the impression that he might become eligible at the time of the appoint ment, and therefore, receive services shortly thereaf ter. Not only was it a surprise to them when the process was clarified at the screenings exit interview, but they were not satisfied with the quality of the screening process itself, and faced a nother potentially lengt hy delay in obtaining
83 services for Darnell. In light of these chal lenges, Darnells mother remains dedicated to her son, trying to both treat his medical condition and provide the enrichment necessary to optimize his growth and development. Participant Four: DJ DJ is a 33 month-old boy of African Amer ican ethnicity who has been diagnosed with gastroesophageal reflux and ventricular septal defects. He presently lives with his maternal grandmother, who was his primary caregiver since birth. DJs grandmother reported suspecting that he had advanced abi lities since six weeks of age and raised him with his older cousin. She consistently reported that DJs rate of developmental milestone attainment exceeded age-level expect ancies, but indicated that he engaged in a number of challenging beha viors (e.g., hitting, self-inj ury, noncompliance, property destruction, tantrums, screaming, scratching, throwing objects, dropping to the floor). DJs grandmother reported that despite th e fact that his beha vior was challenging, it appeared to serve the functi on of communication. His family struggled to identify what it was that DJ wanted or needed. They decided to try to control his diet despite its high expense, reporting that decreasing sugar and increasing lean meat, fresh fruits, and fresh vegetables appeared to help. Likewise, DJs grandmother indicated that his behavior improved once he was given daily opportuni ties for exercise. Once DJs language improved and his grandmother reported that he became quite articulate (e.g., an expanded vocabulary, pronoun usage, using logic and r easoning in arguments with adults). DJs behavior reportedly worsened after 18 months of age. According to DJs grandmother, his pediatrician dismissed his challenging behavior, claiming that If hes aggressive, its just that he s very intelligent. DJs grandmother reportedly did not
84 receive any practical advice; she was told to simply wait. Though he was evaluated at the early intervention program at both 14 and 26 months of age, he was twice determined ineligible due to reports that he was devel opmentally advanced (i.e., scoring consistently at the 38-40 month level at 26 months of ag e). The only reported concern was difficulties with articulation of speech sounds, which make s it difficult for others to understand what DJ is trying to communicate. DJ was then enrolled in daycare, but soon experienced difficulties in that setting, as he reportedly wa nted to engage in different activities that were suited for older children (e.g., read ing books, watching movies, playing games, practicing writing). Facing expulsion from preschool for consistent noncompliance and task refusal, and consistent difficulties with tantrums in public settings (e.g., restaurants, the mall), DJs family (e.g., grandmother, moth er, uncles) elected to try to enhance the structure and predictability of the familys routines (e.g., dinner times, mothers work schedule). DJs grandmother also reportedly tried to pr omote consistent parenting practices, suggesting that his mo ther refrain from spanking an d using coercive discipline practices. DJ and his family remain on the EIPBS program waitlist and his language remains difficult to understand at times. Re gardless, DJs grandmother reported that the family intends to continue to build on his st rengths and to work together to minimize the obstacles that may adversely impact his development. Participant Five: Andrew Andrew is a 38 month-old Caucasian boy diagnosed with both otitis media and pervasive developmental disorder, not otherw ise specified (PDD-NOS). Born face-down, without oxygen, and his cord wrapped around his neck, Andrew was the product of a difficult labor. Andrew is an only child. At six months of age, Andrews mother began
85 to observe signs of challenging behavior (e.g., intense head banging, night terrors, aggression). Dismissed by his pediatrician as developmen tally appropriate, Andrews mother soon noticed that the head banging ha d become increasingly intense over the next six months. Each of Andrews developmenta l milestones reported ly occurred on time, including sitting, crawling, walk ing, and talking. At 12 months of age, Andrew got an ear infection, which created speech problems according to his mother. After tympanostomy surgery, Andrews mother re ported that he would acquire language, but quickly lose it. Andrews challenging behavior rapidly es calated, becoming both frequent and severe (e.g., hitt ing, biting, tantrumming, self-injur y). Andrew had no fear whatsoever. Andrews mother reported that doctors continued to dismiss her concerns at 18 months of age as developmentally appropriate, despite the positiv e history of autism spectrum disorders within her family. Andrews mother continued to bring him in to the pediatrician, each time to no avail. Despite fr equent visits to the pediatricians office, Andrew did not receive a diagnosis or a referr al for follow-up evaluation or service. At the same time, Andrew had become increasingly violent and aggressive, especially in public places (e.g., restaurant, grocery store). Both Andrews family and his mothers friends had begun to limit the time th ey spent with him and his mother. Following a divorce, Andrews mother re married and elected to take him to another state in which he might be more likely to receive services and supports. Days prior to the move to Minnesota Andrews mother allegedly c onvinced the pediatrician to consent to a referral to a neur ologist. The neurologist conf irmed his mothers suspicions that Andrew had PDD-NOS, and referred Andrews mother to a developmental pediatrician so that he coul d obtain a formal diagnosis of autism. While in Minnesota,
86 Andrew was determined eligible for speci al education services, and received a combination of occupational therapy, speech-language therapy, joint compression therapy, and desensitization therapy, in addition to pharmacotherapy (i.e., medication). Andrews mother reported that these therapie s were helpful, and that his therapists reported progress. Shortly after the move to Minnesota, Andr ews biological fath er filed a lawsuit against his mother, claiming that Andrew moved to Minnesota against the state of Floridas approval (i.e., there was an alleged violation of a divorce-related statute of limitations). As a result of this lawsuit, Andrew and his mother were ordered by a court to return to Florida. Since then, Andrews mother reported that she was unable to obtain the same services for her son as those that were provided on his individualized educational plan (IEP) in Minnesota. She i ndicated that the state of Florida required a formal diagnosis of autism before Andrew c ould be eligible for services in school, and that the state would not honor the same conditi ons as specified in the pre-existing IEP. In addition to these concerns, Andrew has been evaluated by a developmental pediatrician, who is in the process of ruli ng out the presence of a seizure disorder. Andrew and his mother currently live with her uncle, while th e two attempt to take trips to Minnesota to see his step-father. Andr ews mother is presently unemployed and has been forced to move in with her uncle afte r Andrews challenging behavior had become so intense that it had created a high degr ee of stress between Andrew, his mother, his maternal grandmother, and his maternal step-g randfather. Andrews father reportedly has minimal involvement in his sons daily care, despite the pending lawsuit on his behalf.
87 Andrews mother continues to struggle to obtain se rvices and supports for her son. The family is reportedly under a high degr ee of financial strain. Andrews mother has spent considerable time researching inte rvention and legal options on the Internet. Andrew is presently taking homeopathic reme dies, and his mother has faded him from gluten, casein, lactose, and foods with re d dye. According to his mother, Andrew continues to await an evalua tion provided by the local sc hool district, and the legal concerns between both biological parents remain unresolved. Participant Six: Lenny Lenny is a 25 month-old boy of Caucasian ethnicity who has been diagnosed with developmental language disorder and otitis me dia. Lenny lives with his older brother and parents, both of whom participated in this interview. Lennys parents described his pregnancy, labor, and neonatal c ourse as unremarkable, and in itially expressed concerns with his development at approximately 15 months of age, citing observations that he was not doing some of the things observed in younger children. Lennys pediatrician reportedly dismissed concerns when they were first brought to attention, but gave him a diagnosis of developmental delay at 18 months of age (i.e., the next office visit). Lennys parents reported that he was having difficulties communicating with others; rather than using age-appropriate forms of communicat ion, Lenny was observed hitting, engaging in self-injury, tantrumming, biting, screaming, and throwing objects. Lenny received a referral for a sp eech-language therapy assessment, and reportedly earned test scores falling well below the age level expectancies. His parents also reported that by that time, Lenny had undergone two tympanostomy surgeries as the result of chronic episodes of otitis media. Lenny then went to the early intervention
88 program, where he received a diagnosis of developmental language disorder and a referral for both speech-language therapy and early intervention. The staff of the early intervention program recommended the latter, citing concerns with challenging behavior (e.g., biting, tantrumming, throwi ng objects, noncompliance). According to his parents, Lennys behavior created a great deal of stress across settings. Lennys father reportedly became very stressed by episodes of challenging behavior out in the community (e.g., restau rant, movies), whereas his mother became more frustrated managing his behavior at home. Working together as supports for each other, particularly when th e other is out of town on bus iness travel, Lennys parents acknowledged which person tends to be more successful in particular settings (e.g., mother in the community, father in the home). As a result, Lennys mother and father reported a greater degree of success in supporting their son when spending time one-onone with their children. Despite such e fforts, Lennys parents reported a sense of isolation from their family and friends. Episodes of challenging behavior on play dates and trips to visit family (e.g., during the ride while visiting) had become so severe at times that they havent seen some of their friends in over a year. Though Lennys parents reported that the flexibility in their careers (e.g., both work from home) allows them to work around situations when their son demands their attention. Lenny is currently enrolled in a home-based daycare, which his parents find to be a good match for his needs. They hope to continue to teach him additional preacademic and social skills before he is evaluated for eligibility into the public schools Early Exceptional Learning Program (EELP).
89 Participant Seven: Tank Tank is a 43 month-old boy of African Am erican ethnicity who has reportedly been diagnosed with asthma, bronchitis, and speech-language delays. He is the older child of a single mother, who also of a two month-old infant boy. Now that she has two children, Tanks mother expressed difficulty managing the two children. In addition to the fact that she is presen tly on permanent disability from her daycare position, both children have asthma and receive breathing treatments via nebulizer twice per day. Tanks mother relies on child support to help provide for her two children. According to Tanks mother, Tank exhibits a variety of challenging behaviors, including hitting, self-injur y, noncompliance, tantrums, sc reaming, throwing objects, and jumping off of high platforms. Consequen tly, Tanks mother acknowledged that he is very demanding. Though she has tried a variet y of behavior management techniques (e.g., spanking, redirection, ignoring, timeout ), Tanks mother reported that none has been very effective. Behavior management is particularly challenging for Tanks mother, as she reported having a bad temper. Tanks behavior is particularly chal lenging in public, causing a degree of community isolation for Tanks mother and other members of her family. However, Tanks mother reported that she is happy w ith the care her son has received through the pediatrician, and acknowledged th at he is an important sour ce of support that has been available at all hours of the day. With respect to services and supports, Tanks mother attended a behaviorallyfocused parent group when he was eligible for services through the early intervention program. Since then, Tanks two primary interventions have been daycare and
90 pharmacotherapy (i.e., medication). Tanks moth er reported a high degree of satisfaction with the program. Though Tank was referre d for a speech-language therapy evaluation, his mother has reportedly experienced difficu lty in coordinating a scheduled appointment with the provider. Despite such difficulties, Tanks mother reported that she wants to teach her two sons how to interact with ot hers and to treat peopl e with respect. She indicated that she hoped to teach such skills to her children to help them cope with the type of exposure children now have to acts of violence. Research Questions Interview data obtained in this study we re transcribed and analyzed relative to three research questions. Pa tterns and trends are discusse d below, with sample quotes provided to illustrate sp ecific experiences. Question One: What are the experiences of parents obtaining services for young children with challenging behavior living in Hillsborough County, Florida? In order to address this question, data were compared relative to both reported experiences and assumptions articulated by this researcher prior to data collection. The specific assumptions were: 1) parents of young children with challenging behavior will report difficulties obtaining accurate and usef ul information regarding their childs challenging behavior; 2) parent s of young children with challenging behavior will report difficulties obtaining services and supports designed to reduce their childs rate of challenging behavior; 3) parent s of young children with challenging behavior will report that their childs challenging behavior cr eated financial stress; 4) parents of young children with challenging behavior will re port experiencing stress among members of their family; and 5) parents of young children with challenging behavior will report that
91 they experienced community isolation as a re sult of their childs challenging behavior (i.e., decreased frequency and/or duration of interactions with friends, neighbors, community resources, religious servi ces, and/or public transportation). Assumption One: Parents of young child ren with challenging behavior will report difficulties obtaining accurate and useful informa tion regarding their childs challenging behavior. Data obtained across participants yi elded three different categories of responses pertaining to difficulties obtaini ng accurate information. First, parents reported that they did not always receive accurate and useful information about their childs behavior from their pediatrician. Seve ral parents reported th at their pediatrician quickly dismissed their concer ns and was generally non-informative. For example, DJs grandmother noted: The doctor was like, Don t worry about it. If hes aggressive, its just that hes very intelligent. Similarly, Darnells mother took her son to the pediatrician for treatment of eczema and reported: Every time it got worse, wed take him in to the pediatricians and complain to them about the new symptoms, remind them about the old symptoms, tell them, Look, what can it hurt to just have him te sted? Their thoughts were, Theres no point to having him tested. Hes too young. Hes still developing. Wait until hes done developing and then wel l see if theres a problem. Despite reports of his worsening skin condition, Darnells parents continued to experience frustration obtaining more detail ed information about his skin condition. Andrews mother cited similar experiences copi ng with her sons pattern of severe head banging during bedtime. Andrews mother reported,
92 We started talking to his pe diatrician when the head banging got worse, and they kept telling us that its not abnormal for a child to bang their head pretty hard to put themselves to sleep. So, they didnt have any concerns for him; they thought that hed outgrow it. We told the pediat rician, This is ridiculous. Hes banging his head at night so severe, he has nigh t terrors, hes losing speech, hes getting violent when I cant understand him. Im getting stressed not being able to understand him. Im getting stressed not knowing how to deal with his violent temper tantrums. Please help me. Once again, it was, Hes getting close to two, the terrible twos, hell outgrow this. They gave me a pamphlet on temper tantrums and how to handle them, and thei r idea of handling them was to pretend that theyre not happening, just ignore them. Similarly, Graces parents found that they knew more about their daughters medical condition than the medical professionals re sponsible for her care. Graces mother reported: Heres this resident whos reached the six to seven sentence paragraph in the medical textbook and doesnt know any more than that. We have had to educate everyone that we come into contact wit h, our pediatrician included. Even the attendings arent any more familiar w ith Williams Syndrome. For a parent, especially a first-time parent, thats incredibly frustrating, because youre so scared, and you want to talk to somebody who knows what the hell theyre talking about. When theyre telling you, Well, Iv e never heard of that, blah, blah, blah, blah, youre thinking, How are you going to help me if you dont even know what my daughter has? I mean, I know more than they know.
93 While these pediatricians may have a very jus tifiable reasons for thei r actions or did not have experience working with children with genetic concerns, it appears that the impact these interactions had on parents was nega tive and stressful. Rather than providing specific information directly addressing their concerns, parents reporte d that their childs pediatrician tended to instead defer con cerns for a future appointment or make frustrating, value-laden judgments (e.g., quest ioning Bris mothers parenting skills instead of considering other medical explanati ons for her behavior, su ch as allergies). In contrast, two parents reported posi tive experiences with their childs pediatrician. When asked about her sons pediatrician, Tanks mother commented: My pediatrician was very good. Hes very, very good with Tank. Tanks been going to him since he was two months ol d. I cant say nothing bad about him because if I call, he calls back. If I ca ll during the night at 2 or 3 oclock in the morning, he calls back. What to do with Tank. Should I take him to the hospital? Should I give him more treatme nt and what medicine? Hes really good. After switching pediatricians, Bris mother offered similar feedback: When she saw Bri, she thought that she had allergies. She pointed out the darkened circles around her eyes. I have b een satisfied with he r, but we are still questioning whats happening. Dr. (provider) is very supportive and is concerned with labels. She told me to be very cautious about accepting any labels until they showed me evidence. Dr. (provider) said that she herself was labeled as a child. Dr. (provider) said that we need to rule out everything first.
94 These circumstances differed from those repor ted by DJ, Andrew, and Darnells parents. In contrast to their reports, Bri and Tank s parents provided indicat ion that they were collaborating with their pediatricians. Tank s mother reported that her pediatrician calls back at any time of day or night, whereas Br is mother said that we are still questioning whats happening, and that the doctor en couraged her to be cautious about accepting labels without reviewing the evidence. Su ch reports appear more indicative of a partnership between the parent and pediatrician than the non-informative and frustrating interactions previously reported by other participants in this study. In addition to these experiences, seven parents reported that they experienced difficulties obtaining accurate medical/developmental diagnoses from their pediatrician, several of which were of a confrontational natu re. Several parents reported that they had a sense something was wrong with their ch ild before it was ever acknowledged by the pediatrician. For example, Lennys father reca lled a conversation with the pediatrician at his sons 15-month we llness check-up: Hes 15 months old and he has two words. The doctor said, No, no big deal. Well see you at 18 months. If hes s till like that at 18 months, maybe well address it. At that point, we were starting to get concerned. The doctors were not. She saw him at 19 months, and said, Yeah, okay. Now its time. Lennys parents reported that they had an id ea that their son was developing atypically before their pediatrician raised the concer n. After years of discussion with her sons pediatrician about his severe challenging behavior, Andrews mother reported a similar experience:
95 We started preparing for the move, and during the preparation, and one of the pediatricians said that, The head bang ing, all along that weve been telling you was normal, now that youve had your husband confirm what youre telling us, we think its a severe brain problem. Th at was very frustrating for me, since Ive been complaining about it since he was six months old and theyve been telling me that it was normal, and now that I have somebody back me up, all of the sudden this is a serious problem. Shortly thereafter, Andrew a nd his mother met with a neurologist to discuss Andrews behavior. The neurologist confirmed her c oncerns. According to Andrews mother: The neurologist was appalled. He could not believe it had taken two years for a pediatrician to finally realize that ther e was a problem and to recommend getting him in somewhere. He was very upset. He told me that my son was clearly and severely autistic. Other parents discussed disagreements with th eir pediatrician. Bris mother elected to change pediatricians after a discussion about her challenging behavior. She commented: I started with Dr. (provider). When Bri started to break out, he questioned me as a parent and whether I was properly cari ng for my daughter. I decided to find another doctor and found Dr. (provider). When she saw Bri, she thought that she had allergies. She pointed out the darkened circles around her eyes. Bris mother was insulted by the doctor, and after switching docto rs, found a provider who not only identified her daughters alle rgies, but established a supportive and collaborative relationship with her. Graces mo ther also reported a number of difficulties
96 as she and her husband learned more about her daughters diagnosis of Williams Syndrome, a rare genetic disorder. Graces mother reported: I told the pediatrician, Yes, well were ta king her to the geneticist in a month or so. He asked, Are they looking for Williams? And I said, I dont know, what is Williams? And he says, Oh some thing they might be looking for and changed the subject. I was so mad. I mean, my God, you dont just dump that on somebody and then send them on their way! Of course, I come home and the Internet being what it is, freak out and convince myse lf that information could not possibly be whats going on with my daughter. Upon meeting with the geneti cist, Graces mother said: The geneticist told us, Your daughter might, might be able to finish high school with help, and shell never be able to go to college. She made it a point to repeat the word, might. I looked at her and sa id, My daughter is not even one year old and you cannot put her in a pigeon hole right now. I said, If I tell her my daughter every single day of her whole life that she can do whatever she wants to do if she wants it bad enough. How much w ill she be able to accomplish? But if I tell her every day, Y ou might, might be able to finish high school with help, and youll never be able to go to colleg e, how much then will she accomplish? After the doctor explained the symptoms and Graces parents realiz ed that she might actually have Williams Syndrome, Graces mother commented: She started describing some of these things, which now, Im familiar with and once she explained those things to me, I can see why she said what she said. However, she is a geneticist, and she is supposed to do this for a living. You
97 would think that she would have a better way of explaining what leads her to that opinion rather than just stat ing her opinion and only just ifying it if I yell at her. So at any rate, I said to her, If its not Williams, what else could it be? She said, Oh well, were pretty sure its Williams. The way that she handled everything was just completely irresponsible. We asked her for informationshe only copied like half of an article on something, and sent it with no cover letter. All of the information we found out, we found on our own, because were smart enoughand sat there for hours on end on the Internet finding it ourselves. Although Grace did, in fact, meet the criteria for Williams Syndrome, the way in which this information was communicated angered her parents. Instead of relying upon and communicating with the geneti cist, Graces parents learne d about their daughters condition using the Internet. While accurate a nd useful information is readily available on the Internet for a variety of topics, Grace s parents chose to use it after they reported feeling insulted by their geneticist. The final category of information obtained relative to this assumption pertained to parents use of the Internet as a primary source of medical/developmental information. While the Internet is frequently used as an informational reso urce for parents, many parents reported that they l earn more about their childs challenging behavior from the Internet than from a prof essional. One such example is Darnells mother, who commented: Yes, and Ive learned those things pretty much through my own research. Just about eczema, that there are different foods and things, and particular environments. For example, being here in Florida is a problem. It gets swampy
98 here and the heat causes it. It really puts him at that state, where hes (in pain) and we cant spend time outside. In less than 10 minutes and maybe 15 on a good day, hes already starti ng to scratch and cry. In the case of Darnells mother, the Internet was used to learn more about the impact of heat and humidity upon her sons chronic skin condition. However, Andrews mother reported using the Internet much more fre quently, learning about a variety of topics related to her sons au tism spectrum disorder. Its all I do all day. Im on the Internet 24-7. The fact of the matter is that I know in my lifetime, nor my sons lifetime, will th ere ever be a cure for it. But if I can find natural ways of making him at least li ve happy, then thats what Ill do, and the only way you can do it is to try to find wh at are all of the ca uses that theyre looking at. I know now that MMR is a possibi lity, so that if I have another child, do you think Im ever going to give him an MMR vaccine? No way. Im never going to do that. And why? Because, What if? Its just a matter of What if? What if I held off, and because I held o ff, I might have a normal child now. As a parent, you have to your children every advantage in life. Although both parents were able to use the Inte rnet to supplement th eir understanding of their childs condition, Graces mother acknow ledged the limitations of relying on webbased information. Specifically, Graces mother remarked: All of the information we found out, we found on our own, because were smart enoughand sat there for hours on end on the Internet finding it ourselves. However, a lot of whats on the Internet is pretty extreme, because its the people that are going through those extremes that are so determined to help other people
99 who are going through the same thing. Y ou dont see the average Joe putting up a website, because, why would he? Youre seeing the ones that have had 20 heart surgeries and the ones that have di ed early because of going under with anesthesia. You see the simila r facial characteristics, and as sad as it is to say, the extreme examples all look lik e they are mentally challe nged. There is a blankness there that adults wouldnt have, but youre looking at the face of an adult. I think heres our daughter who took us 8 years to get, and you become afraid shes going to be living with us now the rest of our lives and never be able to have a family of her own, and its beyond comprehension at that point. In summary, multiple parent respondents shar ed several negative experiences with their pediatrician relative to both diagnosis and obtaining accurate and useful information to help support their child. In contrast, seve ral parents acknowledged that they used the Internet as a primary source of information used to support their ch ild. While the degree of Internet usage may vary across participan ts for reasons such as access to web-linked computer systems, an individuals ability to effectively research a topic of interest, and access to research data bases (e.g., PsycInfo, the Educati onal Research and Information Clearinghouse), it also appears that parents di ffer relative to the degr ee of depth in which they research information (e.g., from obtaini ng simple descriptions to investigating medication side effects to reviewing research). Assumption Two: Parents of young ch ildren with challenging behavior will report difficulties obtaining services and supports designed to reduce their childs rate of challenging behavior. Although parents provided a va riety of responses to this assumption, each shared experiences of difficu lties obtaining services for their child. The
100 frequency, intensity, duration, and types of service varied widely across children. Consequently, the degree to which parents reported positive and negative experiences varied as well. For example, five pare nts described positive experiences with the professionals that provided support to their children. Lennys parents described their experiences obtaining developmental evaluations for their child as satisfactory. They commented: At the (clinic), I felt that I agreed wi th her assessment. He was not able to complete the task. I was not necessarily happy with his performance level, with what he did, but what she presented and what she asked him to do, I understand that he was not able to complete that. When we got to th e one at the Early Intervention Program, it was the same situa tion there. They asked him to point to a number of pictures, point to the therapists. Despite th e fact that your child cant do that within or doesnt do it in the pres cribed time period, I feel that he is intelligent. I feel that he is, and I think that if he were more interested, in the material for starters, and perhaps an altern ate way of getting to the same result, he might do better. But I think that for what they are and for being standardized as they are, I think that the environment was fine. Both of Lennys parents placed a high degree of value upon services for their children, and made plans to enroll him with a preferred teacher in daycare/preschool as early as they could. Lennys mother commented: We were hoping all along for a slot in her classroom. It was like, Healt hy delivery, and (teacher) has a slot. That was the mantra at the beginning, as we were ge tting ready to have him. Plus, (brother) had been with her
101 for a year or so at that point. What we would have done at that point was pull (brother) out so that (child) would have taken that slot. Other parents expressed satisfaction with specific service providers, especially those perceived by parents to be above and be yond the routine or re quired level. For example, Bris mother received behavior intervention services from a provider one weekend. After meeting with the pr ofessional, Bris mother remarked: I was just excited that sh e would take the time on a Saturday to come out and spend time with us. I had met with her be fore, but this time, she gave up her own personal time at home and even offered to go to the mall with me. That says a lot about that shes definitely willing to help and that these people do exist, to try to help you get there. Similarly, Graces mother reflected upon the positive experiences she had with another provider who listened to her concerns and coll aborated in explori ng creative solutions: We got hooked up with (Provider) through (hospital). (Provider) is a miracle for us. She was the first person who was able to sit and talk to me and give me ideas about how to help get her to eat and di fferent things I could do and told me different things she should be doing, how to make her do it, you know? Shes very clever and easy to talk to, and very creative. She had a lot of different methods that she tried with Grace. She started out doing signi ng with Grace, and that has been incredibly effective in helping her learn how to communicate. In contrast to these experiences, parents also reported a host of negative experiences across services (e.g., medical, daycare/pres chool, speech therapy, EIPBS parent group, the early intervention program). For ex ample, Darnells mother discussed her
102 experiences obtaining medication to remedy her sons chronic eczema. Rather than describing a systematic or scientific pro cess to remedy her sons concerns, Darnells mother reported experiences that seemed to be more hit or miss: It was quite overwhelming, because none of the professionals that I had gone to for help were able to help, and it seemed like they started to really throwing things out there. Of course, the condition with Darnell scratching, he had damaged his first layer or so of skin. I noticed that when they started to throw stronger meds at him (since he was chronically scratching a nd breaking his skin), I would apply the topical meds, and they would burn him. As we speak right now, Darnell is discolored. His bottom half of his body is probably at least four shades darker than his face, if not more. Not only did Darnell reportedly receive medicati ons that did little to help him, Darnells mother was frustrated with the training of th e professionals she met (i.e., training relative to understanding the illness, its causes, optim al forms of treatment, experience providing such treatment). She said: I did not think she was really knowledgeab le about eczema. What she advised me to use I found later was causing him to ha ve bacterial infectio ns from the wound. She was telling me to keep him heavily oiled with Vaseline a nd other things as such. However, I found that because of him scratching profusely and breaking skin, that was not allowing the wounds to brea the. It actually kept him infected. Other parents, such as Tanks mother, reported having difficulties making appointments with local providers. Tanks mother said, It was hard trying to set up an appointment at (provider). Every time I would call, I would leave a message or they wouldnt call. In
103 addition, Tanks mother commented that she received services that failed to meet expectations. As Tanks mother describe d her experiences atte nding a behaviorallyoriented parent group, she reported: She (facilitator) was ju st talking to you (i.e., parent s). How you going to act with your kids? Whats the outcome? How do they act when you try to get them to do something? How to get them on a time sc hedule. Basically just read to your kids. It wasnt bad. Everything that you get is good because even though you know something, its more than what you know. However, it really wasnt about the behavior. Despite the groups reported focus, Tanks mo ther claimed that the group was too general and did not address her con cerns regarding strategies to help manage her sons challenging behavior. Other parents, such as DJs grandmother, also reported receiving services that did not meet their familys expectations. In DJs case, the family experienced difficulties with daycare. Speci fically, DJs grandmother and family had become concerned about whether the sta ff of the daycare had enough training or experience to adequately support or manage r DJs behavior. According to DJs grandmother: We put him in daycare and we noticed that he was going through changes in daycare with behavior. He wanted to direct the class. She wanted them to write, he wanted to read. She wanted them to play with toys, he wanted to watch a movie, and he would disrupt the class because he wanted to do what he did, so he wanted to change the schedules at school. So we had threats of him being put out of school. No fighting, no hitting, no kicking. Just not being able to manage him
104 with the other eight or 10 children in the class, so we had another challenge. He was going to be put out of school. Although the news that DJ was advanced was ce rtainly positive, the fact that the daycare staff were unable to handle him caused stress for the family. DJs challenging behavior had reportedly become an obstacle keeping him from opportunities to enhance his growth and development. Similarly, Darnells mother experienced communication difficulties as she attended a county-wide developmental sc reening. Expecting that she had brought Darnell to a location where he would receive an eligibility evaluation for exceptional student education services, Da rnells mother had been misi nformed about the purpose of the developmental screening. She reported: I was told zero to three could go to USF, which meant zero up to age four, not 36 months. She told me that I was incorrect and it was 36 months for children to go to USF. So I had been misinformed by the facilitator. That was pretty much what she pumped me with all throughout the scre ening. That was why I continued the process because I already l ooked into the fact that they had a developmental evaluation team. My intent when I we nt to Child Find was only to get their results, and to get a second opinion from USF. I didnt know the two were linked together. So I found out I was unable to do that and had been misinformed. That was a blow, and on top of that, I was mi sinformed again by a member of their staff. As a result of this confusion, Darnells mo ther learned that she would have to wait several months before her son could be evaluated by the school system. Whereas
105 Darnells mother thought she was at the point of arranging se rvices for her child, she was surprised to find that she was only at the beginning of the process. Graces mother also became frustrated with the need to continually fight with the local early intervention program to obtain serv ices for her child. She continually fought for services based on her own research and wrote letters or prov ided documentation to ensure that decisions made about her child ac tually met her needs. According to Graces mother: There was a lot of stress in yelling at my service coordinatorYou know, looking back, I probably just should have gotten a new service coordinato r, but I didnt. I managed to get everything we needed, but I had to fight for every freaking bit of it. So early intervention made my life more difficult, because instead of giving me the services that my daughter need ed, every conversation with them was stressful. I had to do major research a nd major documentation in order to justify any decision. I had to write letter after lette r and bring in mounds of paperwork to meetings to be able to prove that it was clear what she needed. So this agency that is supposed to help me, to help me define the needs of my child, did everything to prevent me from getting servic es for her, and it is a horrible shame that that agency makes the lives of pare nts more difficult than they have to be, when their job is to do precisely the opposite. It is interesting to note that while these t ypes of findings described negative experiences, parents reported taking on a greater role as advocates for their child, which can be considered a positive. In the case of Graces mother, she recently accepted a position to sit on a committee affiliated with the loca l service system. As she remarked:
106 Im working with them to try to make that better. I heard the word, advocate, but I never really knew what it was to be one until I had Gr ace. Its not just about Grace, its about every kid. Its abou t every kid, and about every parent, its about those parents that are uninformed, who dont know what to do, dont know who to call. Im tenacious enough to fi gure it out or bug somebody until they tell me, but theres a lot of people that arent, that take the word of their pediatrician or take the word of their specialist or who will listen to their service coordinator as if that person is God himself, and w ill say, Well, they dont think my child needs an hour of physical therapy, they think having therapy once a month for 10 minutes is going to help my child. Not only do I not want to be that ignorant parent, I dont want that agency to ge t away with doing that to any parent. Although unanticipated, this finding is of pa rticular importance. Not only does the response of Graces mother serve the function of protecting her child, at the same time, she becomes a role model and support for others in similar situations. Finally, Andrews mother explained how she and her son were stuck in a legal dispute with his biological father. Accord ing to Andrews mother, the legal dispute entailed keeping him in Florida so that he co uld live in close proxim ity to his father, and away from Minnesota, where Andrew and his mother had recently moved with her husband. As a result of this di spute, Andrews mother was fo rced to keep him in Florida against her own will. Relative to services and supports, Andrew had an existing Individualized Educational Plan (IEP) fr om Minnesota that provided an array of comprehensive services. However, Florida has yet to agree to provi de these services. According to Andrews mother:
107 What were working on is working on fo rcing the state of Florida to honor the IEP that he already has in existence. Th e school is willing to give him the speech therapy and the occupational therapy there, but theyre not willing to only let him go to school for two and a half hours per day. They want him going from open to close, five days a week. Its been de emed through his IEP that not only can he handle two and a half hours of that type of training, but he can only handle it four days a week. In Minnesota, they take a past opinion of the child and what they know about the child into heavy cons ideration, especially when theyre scheduling the classes, whereas Florida is going to say, We know whats best, and we wants him to go five days a week, six hours a day. Thats the beginning and the end of it. Complicating matters further, Andrews mother reported that he is not eligible for the same services in Florida as he once was in Minnesota due to the fact that he is diagnosed with pervasive developmental disord er, not otherwise specified (PDD-NOS). She mentioned: Because Andrew is only diagnosed with P DD, and hes not officially diagnosed with autism, hes not going to qualify fo r anything. The state of Florida just requires an official diagnosis. It doesnt matter that PDD is a life-long developmental delay, that there is no cure fo r. They still insist that an official diagnosis of autism or Aspergers or any of those other different medical conditions be made. Until that happens, hes not going to qualify. Believe it or not, there is also such thing as being disabled, but not being disabled enough. When it comes to Floridas schools as well, until he is officially diagnosed with
108 autism, they consider that hes not di sabled enough. Thats why theyre having trouble with him. While the accuracy of the statements made by Andrews mother appears to conflict with policies and procedures articu lated by the Florida Departme nt of Education (Florida Department of Education, 1998), her statem ents nonetheless illustrate difficulties communicating with school staff and/or accessing accurate and useful information regarding the services and supports available to Andrew. Despite the precise reason, the experiences reported by Andrews mother ap pear indicative of difficulties obtaining the services and supports Andrew needs. In summary, each parent reported some degree of difficulty as they sought to obtain services and supports for their young ch ild with challenging behavior. Though the needs and services provided to the children in the participant sample are diverse, the fact that each parent reported difficulties obtain ing services is troubling. Knowing that services and supports consistently provided to young children with challenging behavior have the potential to make a difference (e.g., Dunlap & Fox, 1996; National Research Council & Institute of Medicine, 2000), these experiences are of particular concern. Assumption Three: Parents of young children with challenging behavior will report that their childs challenging behavior created financial stress. Though each parent varied relative to thei r type of employment and level of SES, each acknowledged a degree of financial strain resu lting from their childs chal lenging behavior. Responses appeared to fit into two different categories, one representing fina ncial expenses related to their childs challe nging behavior (e.g., cost of medi cations, health insurance, gas, daycare, food) and the other reflecting stress a ssociated with their career. In reference to
109 the former, parents consistently reported that financial expe nses associated with their childs behavior had been significant at times, so much that the cost had occasionally reduced the ability of some families to take care of needs in other areas. One such example pertains to reported concerns with health insurance. Six of eight parents interviewed described costs associated with healthcare expenses. For example, Andrews mother reported: His last surgery was two weeks ago. He had adenoids and his tonsils removed. That was a $7000 surgery that insurance pa id 85% of, so we were stuck with a $1,000 bill. Over the last year, medical bi lls that have accumulated that health insurance is not responsible for come s to a total of $3,000. Thats after insurances part. That doesnt includ e all of the prescriptions, monthly prescriptions. His monthly prescriptions total about $65 a month. Out of pocket expense. Special dietary needs are about $100 a week. Similarly, Darnells mother expressed concer ns obtaining enough medication to treat her sons chronic eczema. She reported a wide discrepancy between what insurance deemed necessary for her son versus what she claimed to have needed: I was only able to get the Elidel once every 30 days because when we first moved here, my husband was laid off in Georgi a and was unemployed since we relocated here. Well, we were both unemployed obviously, and we were only able to get one every 30 days, and I was told by othe r physicians that she should be able to override Medicaid to get us what we need ed to get through the month. The Elidel at 100 mg would only get us through two days, maybe.
110 Other parents reported similar concerns with the costs of therapies. For example, Lennys parents commented: Our insurance does not cover developmental speech therapy. It covers speech therapy if somebody for instance, has a car a ccident and they used to be able to speak, and they lost that ability. That w ould be reparative. But because he never had the skill, it was not covered, and because of his age, we had to go through the EIP. Andrews mother also shared concerns with the cost of therapy, and coverage that she considers to be most important: Andrews going to need 30-40 hours a week of ABA therapy at approximately $70 an hour. That does not include gett ing him re-enrolled in his speech and occupational therapy. Health insurance usua lly pays full for those, so there is no out of pocket with those two therapies. My health insu rance pays for all of that for him. Im very blessed, but the ABA th erapy is the most important therapy. It is the one that he gets th e most of, and health insurance doesnt want to pay for that. In addition to these concerns, parents also sh ared concerns relative to the affordability of co-payments for office visits relative to the ch ilds frequency of need. Darnells mother continued: Weve lost so much money, and with ever y time that Darnell needs to go to the doctors officeand he really needs to go quite oftenI cant take him because thats another $20+ that needs to come with a co-pay. There were some times
111 where I really needed to take him to the emergency room, but I thought I couldnt take him, because that would cost us $100. Both Bris mother and Graces mother expressed similar concerns about the cumulative effect of frequent co-payments. According to Bris mother: I have Blue Cross/Blue Shie ld. It costs $25 with a co -pay per prescription. $25 for this medicine, $25 for this medicine. Its expensive. Financially it has been unbelievable. Thats the sad part about it. My frustrations with health care in America today, period. Graces mother commiserated: We have insurance, but its a $25 co-pay every time you walk through somebodys door, and so were on the Vis a health plan, along with our insurance, going quickly in debt. Another common source of financial stress cam e from daycare or preschool. Parent respondents readily acknowledged the benefits of daycare/preschool, but cited financial constraints that limited their ability to either seek a better daycare/preschool setting or enroll their child for the entire week. For example, Graces mother discussed her experiences finding a preschool setting: We can only afford to have her there Monday, Wednesday, and Friday. While Id like to have her there Tuesday and Thursday, its just not feasible financially. So shes there Monday, Wednesday, and Frida y. Tuesday and Thursday she stays with my mother in-law 9-1 p.m. (Husba nd)s parents live 15 minutes away and they keep her for me while I work. I wo rk now part-time, from 9-1 p.m. and up until recently, they watched her that whole time, Monday through Friday.
112 Both Bri and Darnells mothers also acknowledged the high cost of daycare. The issue is that the need for a daycare provider that can handle the child limits options, and often puts the burden on the extended family to reduc e the burden because they are expected to handle the child no matter how difficult. There a ppears to be an implied expectation that more expensive daycare would be able to handle the child better. Bris mother reported: If you can afford good daycare, thats good. Before I had a child I had never thought about the cost. Its expensive. Her daycare is way across town, so Im running over there everyday, so the gas is ju st outrageous. So Im trying to work between the hours, and thank God that my cousin owns the daycare. Similarly, Darnells mother commented about her confidence in leaving her son in the care of another person: I cant leave Darnell with anyone. Nobody is able to really give him the attention that he needs with this disorder. Nobody is able to get a handle on it or get it under control and its still an issue as we sp eak. Its a lot more tolerable, but as a result, I cannot get any type of daycare for him, or any type of care. I cant afford any type of special nurse, or any type of private nurse who could come in and sit with him, and thats something thats pr etty overwhelming, because other than my husband and myself, nobody really knows how to treat him and nurture him back to a relaxed state. Not even my husband, who starts to get nervous when he starts to cry and hes obviously in a lot of pai n. So, we have not been able to do daycare and were definitely not able to do a preschool environment where he cannot eat a lot of the foods or participate in some of the activities. If Darnell
113 becomes too stressed out or frustrated, or if he starts to sweat a little more than he needs to, then of course his condition just flares up. In addition to the costs associated with health insurance, daycare/preschool, therapy, and medications, parents of young children with challenging behavior shared some additional concerns, including the costs of gas, training pants, and high-quality produce. For example, DJs grandmother expressed a concern with her gra ndsons nutrition. She reported that he demonstrates less challenging behavi or when he eats a balanced diet. In order to provide DJ with fresh produce, his grandmother commented: We might have to go to two or three st ores just to get a bargain price on highquality produce, which means we take all the ads and the sale papers to see whos got the best price for this, this week. So thats time consuming. Expensive for the gas, the prices are off the wall right now, but we do that. I mean, this is our baby, and hes gotta have his health. Darnells mother also commented on the expe nse of a high-quality diet. Bris mother acknowledged that training pants represent a constant financial stress, and Graces mother summarized the financial strain that she and her family face as the result of the accumulation of financial expenses She mentioned: Theres been a lot of times when we didnt know how we were going to take another step, how we were going to be able to pay for stuff. It has been such an overwhelming, massive, daunting task, a nd you just dont know how youre going to be able to face it, but the fact of the matter is that you wake up and there it is right there in front of you, and youve gotta do something, you know?
114 With respect to the impact of raising a young child with challenging behavior upon ones career, some parents reported that raising their young child has impacted their career (e.g., reduced options for jobs or reduced oppor tunities for advancement). For example, Bris mother indicated that raising Bri has caused difficulties at work. She said: Its been a problem. Ive been trying to get promoted, but I have to take time off from work because of my daughter. Absenteeism for your daughter limits promotions, but you have to know where your priorities are. Im being penalized for it; Im not paid for being out for my daughters sick time. I dont get personal days; vacation days are the only option. Sometimes shes at the doctor maybe 2 or 5 times a week, and I have to change my schedule at work to accommodate the appointments. Darnells mother also reported pressure to balance work with caring for her child. According to Darnells mother, caring for her child and providing the necessary supervision limited the time that was availabl e for her to work outside the home. She reported: My husband and I were both planning to work. However, that did not happen whatsoever. Now my son needs special care He needs special things that this program does not fund and most importan tly, Im not even getting the support from the physicians that I need. On the other hand, some parents were ab le to find accommodations to their work schedule such that the difficulties balanc ing work with caring for their child were reduced. For example, both Lennys parents work from home. Lennys father reported:
115 Its not as though theres a job or something that I have to do at a particular time, and I cannot leave. I have tremendous flex ibility and I work from home. Youre talking to two people who are not in traditional circumstances Were both lucky to have the jobs that we do. Telecommu tingyou have to set that as a strategy. Because if the school calls, if the childs sick, unlike many other parents, in most cases, one of us can be there in five minutes. Similarly, Graces mother was able to enroll her in the preschool affiliated with the church where she worked. This arrangement allowed her to balance work with the opportunity to be available to deal with problems with Grace as they arise. She commented: The preschool is actually where I work. They are run independently, but I am able to peek out my door and hear her hol lering, and if theyre having issues, they can bring her to me. It works out really well, because, with my history, trust is very difficult. It took me th at whole year to get me to let my mother in-law keep her all day long, let alone put her in preschool So the fact that its on the facility where I work is good, because that way she is able to be independent without me having a panic attack every time I pull away. Unfortunately, flexible accommodations such as those were only reported by two sets of parents. However, it would appear that the inherent flexibility in each set of circumstances, and the physical proximity to their children throughout the day, helped reduce the strain associated with raising a young child with challenging behavior.
116 Assumption Four: Parents of young children with challenging behavior will report experiencing stress am ong members of their family. Data obtained across participant interviews indicat ed that young children with challenging behavior may have a negative impact upon relationships among family members. Specific categories pertaining to these data incl ude relationships between memb ers of the childs immediate family, and relationships between members of the immediate and extended family. With respect to the former, Lennys fa ther summarized the feeling that he experienced after managing his sons intense and draining behavior: If youve had a tantrum in the morning, its just as though you ve had a fight with your spouse. Bris mother reported that she lives with her pa rents for financial reas ons and support raising Bri. However, she remarked feeling stress ed about the situation, commenting that, My fathers had quadruple bypass, and my mom ha s had back surgery, and like I said, they have a 14 year-old who has special needs too. Darnells mother also reported that his behavior has impacted other members of his family: Darnells condition affected everybody. When hes crying and waking up in the middle of the night at 3 or 4 oclock in the morning and hes scratching and crying at the top of his lungs. My othe r children would wake up. My daughters saying, Mommy, is Darnell okay? Whats wrong? We had to move Darnell out of their bedroom because it was affecting everyone. On other occasions, it appeared that some family members clashed relative to the way in which children were disciplined or redirect ed. Andrews mother mentioned that her sons challenging behavior caused a rift betw een her, Andrew, her mother, and her stepfather:
117 Things that have been hard for my step -father and I. My step-father has never wanted kids in his life. He doesnt have any of his own. So not only can he not handle kids but the ones he now has all ha ve issues. When we first came down here, we had to live with my parents for a short period and then we ended up coming here. My son created too many probl ems. He was up all night. My stepfather works construction in another city, so he has to get up at four oclock in the morning. He tries to go to bed early, and my sons up all night, making loud noises. Its very difficult to get him to sleep without him crying, so my fathers up all night. My parents are consider ing a divorce right now because of everything. Its caused a lot of tension. My father a nd I no longer speak. I have had to cut off all contact with him. Thats made it difficult for my mother, because when I cut off all contact with him, my son no longer sees him because he cannot control his attitude and his te mper around my son. So in doing that, my mother went from being able to see my son whenever she wanted to once a week, if that. In addition to the fact that Andrews grandparents are c onsidering divorce, it is also evident that Andrews challenging behavior also reduced his access to his grandmother because of his grandfathers unwillingness to allow the child to visit According to Andrews mother, his step-grandfather became agitated whenever he exhibited challenging behavior. Andrews mother found her step-father was responding in a way that was counter-productive to Andrews care, and commented: He just started pitching a fit, and finally my father just turned around and told me to shut him up. You know, what do I do? If I discipline him, its going to make
118 him get louder. If I ignore it, hes goi ng get frustrated, and its going to make him get louder. No matter what I do here, hes going to get worse. So finally, I just took the route that you know, unless my fath er sees my discipline him, hes going to think that Im not doing anything and its going to make my father worse. So I picked my son up, I spanked him, and I told him to sit on the couch. Screaming bloody murder, he went over to the couc h. Screaming, screaming, screaming. My father got upset, turned around and said, Good going, you just make it worse. Finally, I just got upset and said, You know what? If you think that you can do a better job, step in anytime. I am doing the best that I can. I am the one home with him 24-7. I am the one who has to deal with him all day, every day. I am the one who knows him best and knows how to handle him best. It doesnt make me perfect, but if you feel that you can do a better job, do it. Andrews step-grandfather became upset whenever he became loud and disruptive. Though troubling to others in the family (e.g., Andrews mother, grandmother), the resulting marital tension between Andrews grandparents and the tension between his mother and step-grandfather contributed to a greater degree of isol ation between Andrew, his mother, and maternal grandmother. In a similar vein, Lennys parents mentione d that their sons challenging behavior has limited their access to family living a few hours away. Lennys mother acknowledged: We have family living in (location) and (location), which are only three and a half hours from here. We dont go. We used to go with (brother) as an infant. I used to take him nursing and ever ything else from the time he was 12 weeks old. By
119 myself, no less. Okay, it was not a big deal. I think weve been down once, no, twice in the last two years. Very short visits. Every four weeks or every six weeks we used to go. So thats a radical change. Absolutely. Lennys mother continued, Even going to Orla ndo. (Husband) has a sister living in Orlando and we used to go there much more often, but just an hour in the car. We used to go and walk into Thanksgiving dinner twitch ing. These data illustrate the types of tension that can arise within families as the result of a childs challenging behavior. The above examples illustrate the types of difficu lt interactions that can occur within either immediate and/or extended family. Not only do these types of intera ctions cause tension, but they also have the potential to isolat e the child and immediate family from other members of the family (e.g., Lennys pa rents visiting family in Florida). Assumption Five: Parents of young ch ildren with challenging behavior will report that they experience community isolation as a result of thei r childs challenging behavior (i.e., decreased frequency and/or duration of interactions with friends, neighbors, community resources, religious se rvices, and/or public transportation). Relative to this assumption, multiple categories of information emerged. Though data clearly illustrate perceptions of community isolation, parents differed in the ways and degree to which such isolation occurred. Spec ific categories include : 1) limited access to friends; 2) limited access to community for social recreation; and 3) limited access to services and supports for parents. Relative to the first categoryaccess to friendsparents typically reported experiencing a degree of isolation from frie nds as a result of their childs challenging
120 behavior. For example, Andrews mother re ported that as a result of her sons severe disruptive behavior: Friends didnt want to hang around me anymore because I have a child, and its a package deal and he doesnt do well at rest aurants. Restaurants set him off. They make him violent. He throws big fits. A lot of public places will set him off. We havent learned everything that does it. He could go to a grocery store and be just fine. Other times, he pitches a fit so bad that he throws himself out of the buggy and lands on concrete and its a big ordeal. Similarly, Lennys parents shared a recent ex ample of a difficult and embarrassing visit with friends and their children: We had an episode where we went to a friends house and it was several other people with their kids. All of their kids are more or less the same age, and we havent seen them since. I was so mortified, and I sent her an e-mail and everything. I wouldnt say that shes wrote us off, but Im sure shes busy. Were still twitching. Were still twitching. It was just that other kids have temper tantrums or what not, but they tend to calm down quicker or its just not as disruptive, and because his are so viol ent and so much longer, it made everybody twitch. In both cases, the presence of the child (and their challenging behavior) created difficult interactions for the other adults. Both pare nts indicated that they havent seen their friends since. In contrast, Graces parents ap pear to have found a way to adapt and still spend time with friends. Graces mother mentioned:
121 My husband is phenomenal. He is one of those rare men who will wash dishes, vacuum, and clean house and laundry, and all of this kind of stuff. I am always saying how fortunate I am. Theres a lot of times on the weekend when he will keep her and my friend, Susan, and I will go to Wal-Mart or go shopping or just putter around for several hours. Hell ki nd of hold the fort down around here and hell occasionally do that in the evening, too. I have to be able to get away and have some time. Through the process of taking turns watching Gr ace, her parents were able to effectively create opportunities for them to spend time and stay connected with friends. Such a strategy was also reported by Lennys parents, who commented, We both travel for work occasionally. There are things we do where its like tag team. Youre it, youre it. Thats our family. In the case of both families, this appears to have been a successful strategy for families to both spend time engaging in preferred activities within the community and to manage their time. The second category pertaining to community isolation pertained to access to the community for the purposes of social recr eation. Seven of eight parents provided a response to this circumstance, particularly w ith respect to trips to the restaurant. For example, Lennys parents commented: It definitely inhibits our ability to go out into the community. Going out to the restaurant. Our restaurant menu at this point consists of Burger King, Wendys, or McDonalds. Any place where we can pay first and then leave. Any place that has a quick exit. Thats our criteria. Lenny is unpredic table and hes destructive
122 not only to our own family unit, but to people around him. Things like movies, and things like that, we cannot normally take him. In fact, Lennys father learned that he becam e so embarrassed with his sons behavior in public that on occasions when he is alone with the children: Im so scared of unsafe behavior in public that all I do is bring them back here (points go the family room). Whatever that is, 40 square feet of family room, that is where I keep them. I play with them I feel them, I bathe them, I entertain them. We wrestle of the floor, there s hugging, theres kissing, theres loving, but I can control that environment. Outside of here, there are times where it gets unpredictable. I guess I embarrass very eas ily. The child thats misbehaving is mine, and everybody is running and looking at you. We we re parents at an older age by our own choice. It would appear that the reactions of Le nnys father are not unique. According to Andrews mother: They see this child, and they see a spo iled rotten, undisciplined kid. They dont see a child who has a problem and is maki ng all of this happen. You go in public and your child pitches a fit, and all y ou hear is, Thank God my children dont behave that way. Oh that child just needs a good discipline. A good spanking. Take him out to the shed, you know? Thats all you hear. Consequently, Andrews mother acknowledged that, We dont sit at restaurants because its an issue. We try to avoid all of the things we know that create issues. It appeared that parent participants frequently cited c oncerns with embarrassment and the perceptions
123 of others observing their child s lack of self-control in the community. Tanks mother reported similar circumstances: He cuts up worse when we go out in public. He runs from you or if I tell him to stop doing something, he tell me to, Leave me alone Hell say that in front of people. They look at me. I have to pull him by the arm or something so that I can talk to him real mean. You understand me? And it still dont work. He still go out and do the same thing. DJs grandmother reported that that he r grandsons curiosity led to difficult situations when shopping at the local mall: Hed get in the mall and hes inquisitive, so hed want to touch the mannequins, wanted to touch the clothes racks and stu ff, and when he couldnt, hed fall out on the floor in the mall. So we started not to take him. While DJs family reacted in a way they felt was in everyones best interest, it is equally important to note that DJs curios ity while out in the community led to the occurrence of challenging behavior. As a re sult of the fact that his family chose to escape a potentially difficult or emba rrassing situation, DJ also lost the opportunity to practice appropriate behavior in a community setting. Finally, Bris mother commented: We dont go out a lot. I cant be out too long; it depends on her allergies and asthma. Shes not old enough for an inhaler; she uses a nebulizer. We still go out to the movies, it depends on her preferences. She loves the park, but cant play in the sand/dirt. She loves the water, but its the same thing. We have a pool, but she cant stay in too long.
124 Across parent interview respondents, it was cl ear that community trips were times of intense stress and potential ostracism. Two of the eight parents interviewed commented on the typical reactions given by adult bysta nders, but across each situation, parents elected to remove their child rather than keep them within their environment. The third and final category pertaining to community isol ation related to services and supports for parents within the community and knowing whom to contact for help. One out of eight parents interv iewed discussed this issue. A parent of a child with Williams Syndrome, Graces mother found hers elf assuming the role of an advocate, which reportedly helped reduce the family s degree of community isolation. She commented: I heard the word, advocate, but I never really knew what it was to be one until I had Grace. Its not just about Grace, it s about every kid. Its about every kid, and about every parent, its about those parents that are uninformed, who dont know what to do, dont know who to call, you know? Im tenacious enough to figure it out or bug somebody until they tell me, but theres a lot of people that arent, that take the word of their pediatri cian or take the word of their specialist or who will listen to their service coordinato r as if that person is God himself, and will say, Well, they dont think my child needs an hour of physical therapy, they think having therapy once a month for 10 minutes is going to help my child. Not only do I not want to be that ignorant parent, I dont want that agency to get away with doing that to any parent. Assuming such a role, Graces mother has serv ed on a committee for an agency affiliated with the local early intervention program. Reflecting back upon these experiences,
125 Graces mother commented upon the importance of such connections with other who understand her child and familys situation. She remarked: We have met a lot of people that we woul d not have met otherwise, weve had the opportunity to learn and experience things that would never have been a part of our lives, and we have become a welcomed part of the special needs communitymeeting incredible people a nd affecting change where we can. In the case of Graces mother, she appears to have learned how to cope with her daughters disability and to turn a negative situation into a positive one where she has experienced personal growth. Question Two: What types of protective fa ctors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to positively influence the experiences of young childre n with challenging behavior living in Hillsborough County, Florida? The research by Huffman and her colleag ues (2001) have identified protective factors within the individual, microsystem, and exosystem levels of Bronfenbrenners model. Using this framework, the reporte d protective factors were presented and discussed, with sample quotes provided to substantiate the presence of perceived protective factors. Individual Level At the individual level, these factors include child selfconfidence, high cognitive functioning, easy temperament and personality, and early history of positive functioning. With resp ect to these factors, DJs grandmother suggested that he is functioni ng above age level expectancies. Describing DJ further, his grandmother remarked:
126 He is just a leader. He leads and dire cts the 10 year-old, and he says, No, were going to do this now. He understands this now and later, and he doesnt procrastinate. It needs to be done now, and if you say were going to do it tomorrow, his response is, Why tomorrow? He says it exac tly like that, Why tomorrow? I said, Because today is not a good day. He said, Why, then, is today not a good day. He argues with logi c. Definitely. But he understands if you explain it to him why youre going to do it tomorrow. Beyond his grasp of logic and rationale, DJs grandmother describes him as having an easy temperament and personality. For example: DJ likes to be the leader and when you leave, he likes to give you a hug goodbye and asks when youll come over because he likes to look forward to seeing whomever he parts company with. And hes never met a stranger; he thinks everybody hes met is wonderful. He loves to give kisses or cuddle. When hes angry, he will step away from you and th ink about whether he was right or wrong, and if hes wrong, hell come back, say, Im sorry, and give a hug, saying, I love you. In addition, DJs grandmother commented th at he was observed in his preschool by a doctor, who reportedly found that his skills were advanced compared to other children of the same chronological age. She said: The doctor reportedly made a decision th at he should go to another program where the parents and staff could learn how to deal with DJ. Their findings were at that time too, that he was advanced. And when we got the letter in the mail and
127 we talked to them again, they said that he scored out between 38 and 40 months at 26 months of age. On the basis of this information alone, it would appear that DJ possesses multiple protective factors at this level. With respect to other children in the participant sample, Graces mother described her easy going temperament and personality. She said: Grace is a very inquisitive child, and altoge ther too clever, and one thing that has always struck me about her even before she was diagnosed is that she draws people to her. She is very happy all the time and friendly. We can be standing in the supermarket in the 10 items or le ss line and have 20 items with the old guy behind us whos crotchety and is counti ng our items and doesnt look like hes had a good day since 1909. By the time were at the end of the line, hes making stupid faces at her, trying to make her sm ile. She has this way about her that like attracts people. Similarly, Darnells mother described her son as a self-confident le ader. She reported: Yes, hes a leader because I think hes confident, coupled with the fact that (her sister) emulates him and he realizes it. Whatever he says, she says, and so he realizes that somebody looks up to him, a nd he kind of manipulates her. Those are his strengths. Likewise, Bris mother suggested that she also has an easy temperament and personality. She commented: Bri is very willful. My purpos e is to turn that into a positive. I hope it gives her ambition. Shes lovingher smile. She ha s a beautiful smile. Shes very easy
128 going, she likes to go out and have fun. Everybody loves her. Shell hug and kiss people. Lennys parents also offered an equally positive description of their ch ild. They reported, He brings a lot of positive energy and laughter and things of that nature. He loves (brother) as a brother and has made him into a wonderful caring big brother. Finally, Tanks mother mentioned that he is a bright young boy. Ironically, it appeared that this strength also presented a challenge. Ta nks inquisitiveness and curiosity may have contributed to the reported difficulties he had at daycare. His mother said: I saw him trying to get the baby to eat chicke n. I said that babi es cant eat that. He said, Why momma? Why? Hes very in telligent. Hes very smart. You tell him something one time and he wont forget it. He knows names. He want to spell his name and hes learning that a littl e bit. He knows his date of birth. He knows who his mom is. He knows his phone number. He knows my moms phone number. Together, these data suggest th at the child participants in this study possess at least one protective factor at the indivi dual level of analysis. Not onl y were parents aware of their childs strengths, but they also tried to both enjoy and build upon then when selecting interventions. Microsystem Level At this level, Huffman and her colleagues (2000) suggest the presence of the following protective factors: Residence with both parents or remarriage after divorce; high level of ma ternal education; stable, orga nized and predictable family environment; cooperative parental coping; so cial support; secure attachment in early years; larger number of classroom friends; a nd high-quality child care at an early age (p.
129 21). With respect to these fact ors, four of the seven children reside with parents who are married (Grace, Darnell, Andrew, and Lenny), the average age of maternal education is 14 years (range = 12-18 years; Lennys mother highest), and five of eight children are presently enrolled in a daycare or preschool program (e.g., Bri, Grace, DJ, Lenny, and Tank). However, the degree to which these programs are consider ed high quality is unknown. In the event that these programs we re accredited reflecting a standard of high quality (Bredekamp, 1991), daycare or presc hool enrollment would se rve as a protective factor. In addition, four of seven children (i.e., Bri, Grace, Lenny, Darnell) reside in a stable, predictable, and organized envir onment, as evidenced by observations and interview data. Finally, with respect to cooperative parent al coping and social support, interview data revealed seve ral examples. One of the most prominent examples was provided by Lennys parents, who discussed th eir appreciation for each others support: We thank God every day that were a team, because we cant see how single parents do it. We can see how a single parent could handle one child, but being a single parent of more than one child, I dont know how they do it. While Lennys parents expressed their appreci ation for each other, Graces mother was happy about the relationships she had formed with others in the community. She commented: We have met a lot of people that we woul d not have met otherwise, weve had the opportunity to learn and experience things that would never have been a part of our lives, and we have become a welcomed part of the special needs communitymeeting incredible people and affecting change where we can.
130 With respect to sources of support, several parents have discussed how they work as a team to get through the day (e.g., Darnells mother, Graces mother, Andrews mother, Lennys parents). One such example is Graces family: Ill keep her or Ill take he r with me with Susan and shell go shopping with us, so he has some time by himself, too. We try to balance out giving each other time without being responsible for the baby. We found out re ally early that you need to tag-team it. Graces parents learned that each needs some time to themselves, and decided to make time over the course of the week where Grace would spend time with her mother so that her father can relax. Likewise, Graces mo ther enjoyed opportunities to shop with her friends and take a break from her daily respons ibilities. In either circumstance, Graces parents reported that they learned to rely on each othe r for support and some muchneeded time alone. Similarly, Lennys parent s, as noted above, also felt it was important to have more than one parent sharing the res ponsibilities of a child with this level of challenges. In addition, Bris family, DJs family, and Tanks family are reportedly closely knit and provide support to each other as well. Another central source of support for fa milies is their religious faith. During interviews, Graces mother commented that sh e relies on her faith for a sense of support and perspective. For example: My dad is a Southern Baptist minister, so I was raised with a lot of faith, and that has helped me during the time that I was abused, growing up, etc. It helps me cope with difficulty. I feel like Ive managed to be able to put things in perspective to know that life is not always going to be pleasant, and while things
131 happen that are unfortunate, you just deal with what youve gotta deal with, and you move on. Once again, a review of the data obtained in this study suggest ed that each of the children possessed at least one protective factor at the microsystem leve l. Protective factors help balance stress, time limitations, and financial limitations of caring for children through activities such as having fun, promoting caring relations hips, and considering how strengths can be built upon to ensure a better future for their child. Exosystem Level Beyond the microsystemic level of analysis, Huffman and colleagues identified a single pr otective factor at the exos ystem level (higher SES). Given the fact that zip codes were the lone in dicator of SES for partic ipants in this study, additional information would need to be co llected to accurately determine SES. Chronosystem Level Huffman and colleagues did not discuss any specific protective factors at this leve l of the ecological model. By definition, the chronosystem refers to the sequence or pattern of events that impact a childs development (Berk, 2002). Following this definition, it would appe ar logical to argue that there are three scenarios by which the passage of time may se rve as a protective factor: 1) the relative age at which the childs con cerns are identified and dia gnosed; 2) the time that passes between the point in which concerns are first identified to the time in which a diagnosis is rendered; and 3) the time that passes between the point in which a diagnosis is rendered to the time in which services are initiated. In the case of all thr ee scenarios, one could argue that the earlier the age or the shorter th e period of time that passes, the more likely the passage of time served as a protective fa ctor for the childs well-being and conversely for children at risk.
132 Relative to these three scenarios, it would appear that the relative age at which each of the childrens behaviors were identified serves as a protective factor. Each childs concerns were iden tified during the preschool years, thereby presenting opportunities to obtain services and supports de signed to effectively treat and prevent the occurrence of challenging behavior in the future. This is particularly true for Grace, DJ, and Lenny, the only children in the particip ant sample whose concerns were first diagnosed at before 36 months of age. Not only were these children identified and diagnosed earlier than the other five children (i.e., identified at ages birth and 14 months, diagnosed at 11 and 20 months, respectively) but they have also received the greatest amount of service in terms of different treat ment modalities, and frequency/intensity of sessions provided. This is particularly true for Grace, who was first diagnosed before 12 months of age. Although each parent reported that their child presented with a physical illness that may have had an impact upon their development and/or tendency to demonstrate challenging behavior, Grace was diagnosed ear lier as a result of physical problems associated with her condition (e.g., ventricu lar septal defects, jaundice, orthopedic concerns). As a result of receiving medical attention early and early enrollment in the early intervention program, the time in whic h Grace was diagnosed served as a protective factor for her. However, in the case of the five of the other six children presented with either otitis media (i.e., ear infections) or a speech delay, the time in which their concerns were identified appeared to serve as a risk factor for them. Research s uggests that there is a relationship between chronic and severe bouts of otitis media, subsequent hearing loss,
133 and resulting speech delays (Friel-Patti, 1990; Lonigan, Fischel, Whitehurst, Arnold, & Valdez-Menchaca, 1992; Rvachew, Slawinski, Williams, & Green, 1999; Teele, Klein, Chase, Menyuk, Rosner, Allen, Bratton, Fi sch, Stringham, Starobin, & Tarlin, 1990; Trivette, 1998). Such concerns are typically identified after 18-24 months of age, the time in which a childs language development en ters a critical period of rapid growth and development (Berk, 2002). Given the fact that children are eligible for the early intervention program until 36 months of age, the duration of enrollment and access to available services is drastically reduced. Though services are available for children between three to five years of age, the m odel of service delivery and the frequency, intensity, and duration of its services are different and ofte n less individualized (Bailey, 2000; Bredekamp, 1991; Carta, Schwartz, Atwater, & McConnell, 1991; Florida Department of Education, 1998; Guralnick, 2000). Compounding the matter further, the standa rd treatment for chronic and severe episodes of otitis media other than antibiotic medication is a surgic al procedure called tympanostomy, where drainage tubes are inse rted into the childs middle ear (Trivette, 1998). Unfortunately, access to this surgical procedure is not equal for all, as Kogan, Overpeck, Hoffman, and Casselbrant ( 2000) found a strong relationship between tympanostomy tube insertions and conti nuous health insurance coverage (p. 249). Therefore, it appears that the natural progres sion of child development, and to a lesser degree, continuous health insurance coverage may contribute to an explanation of why some childrens concerns are identified earlier than others. This is particularly relevant to young children with challenging behavior, the func tion of whose behavior is often closely tied to communication (i.e., initi ating or sustaining social in teractions; requesting access
134 to preferred persons, objects, activities; Carr, Levin, McConnachie, Carlson, Kemp, & Smith, 1994; Dunlap & Fox, 1996; We therby & Prizant, 2000). Question Three: What type s of risk factors (i.e., mi crosystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic ) are perceived by parents to negatively influence the experiences of young childre n with challenging behavior living in Hillsborough County, Florida? The research by Huffman and her colleague s (2001) identified risk factors within the individual, microsystem, and exosystem levels of Bronfenbrenners model. Using this framework, the reported risk factors were presented and discussed, with sample quotes provided to substantiate the pres ence of perceived risk factors. Individual Level At the individual level, risk factors include low birth weight and neurodevelopmental delay, medical problems, psychophysiological problems, early cognitive deficits, difficult temperament and personality (e.g., hypera ctivity, aggression), and early behavior and adjustment problems. Given the fact that each child participant demonstrated challenging beha vior as part of an inclus ion criteria for this study, one could argue that each child possesses risk factors associated with early behavior and adjustment problems. Likewise, each child reportedly demonstrated aggression (including self-injury), there by suggesting that they may ha ve a difficult temperament or personality. In addition to th ese risk factors, two children were born prematurely at low birth weight (i.e., Bri, Grace), and one was born with a neurodevelopmental delay (i.e., Andrew, who has pervasive developmental di sorder, not otherwise specified). To illustrate such risk factors, Andrews mother shared this description of her sons repetitive and disruptive behavior:
135 He had no fear whatsoever. When we we re in the process of moving, we had an entertainment center that was a little shorte r than the table and just as long. We had cleared the TV off of it, because we were getting rid of everything. He proceeded to take one of his riding toys and put it on top of the entertainment center, climb up, get on it, and ride it right off. Comple tely scratched up himself, hurt himself real bad. Screaming, cryi ng, and I picked him up, kissed his booboos, and told him not to do it again. Five seconds later, he was right back up on there. Illustrating behavior problems as well, Lennys parents remarked: Because he was behaving somewhat like a caveman, it was hard for him to get along with his brother. His brother would build a tower, and hed come in like a caveman. And hes probably in his ow n language, probably trying to say, Hey, Id like to play with you. Instead, hed swat down the tower, and then he bit (brother) in the middle of his back. Th eres no fat there on the back. He was truly like a wild animal. Describing risk factors inhere nt to low birth weight and/ or neurodevelopmental delay, Graces mother discussed her experiences as she attempted to take her daughter home from the hospital when she realized that th ere was something wrong with her daughter: We were set to go home and they were doi ng that final check they do right before they send the baby home and said that she has a heart murmur. That was the first indication that things werent right. Actually sh e has twotwo little VSDs, little holes in her heart. We finally got clea rance to leave from the cardiologist and when they did the next final check, they said, oh, shes yellow. So then she
136 was in the NICU for six days with jaundi ce. Her billirubin counts were like 22, and 25, I think, causes brain damage. They were really high. They didnt have to do transfusions or anything, but they had her under five different sets of lights. So we went from almost going home to theres something wrong with our daughter to theres something else wrong with our daughter. In an example of difficult temperament or pe rsonality, Bris mother offered this account of her daughters language and social development: We started to notice a change at 18 m onths. Her language stopped, she wasnt speaking like other children her age. At 24 months it seemed like she had stopped learning. She was attending daycare, but wasnt able to go all the time because she had eczema and allergies to mold and animals. Bri began to withdraw from others and woul dnt socialize with other kids. It is important to note that while each child participant possesses at least two risk factors at the individual level (i.e., difficult temp erament and personality, early behavior and adjustment problems), the children themselves vary widely in terms of their medical/developmental histories. While each child demonstrates risk factors associated with challenging behavior, they differ re lative to the underlying reasons why these behaviors might occur (e.g., medical/developm ental concerns, environmental factors). Microsystem Level At this level of Bronfenbrenne rs model, several risk factors have been identified in the literature, including the followi ng: family composition (e.g., divorce, remarriage), low level of maternal education, parental substance abuse, problematic maternal relationship histor y, parental psychological problems, poor parenting practices, maltreatment insecure attachment in early years, difficulties with
137 peer relationships, and child care by someone other than the mother (e.g., daycare/preschool). However, it is interes ting to note that some factors, such as remarriage and daycare/preschool enrollment, may serve as a risk factor in some situations, and as a protective factor in others (Huffman et al., 2001). Given the fact that the U.S. Census Bureau indicated that appr oximately 50 percent of all marriages in the United States result in divorce, remarriage ma y reflect stability in some situations, and instability in others (U.S. Census Bureau, 2004). Like wise, research suggests that daycare/preschool enrollment is considered a risk factor, unless it is in a high quality program (Belsky, 1999; Huffman et al., 2001). Using these identi fied risk factors, each of the children possesses at least one risk factor at the microsystem level. Three of seven children (i.e., Bri, DJ, Andrew, Tank) reside in families with a single or remarried parent. Three of seven children could be characterized as being at-risk due to low maternal education (i.e., 13 years of schooling or less; Grace, DJ, Tank). All seven children have received child care by someone other than the mother (e.g., daycare/preschool). Relative to the other identified risk factors, Bris father reportedly had difficulties with substance abuse. Bris mother commented: When I told him, I didnt think he believ ed I was pregnant. I actually showed him the test in February and it had been in November. He had actually been in rehab at the time. Thats exactly why I left. He was on drugs, and I couldnt deal with it. I left and actually, he checked into re hab. I thank God that he did because he is now drug free, hes a very producti ve young man, and has his own business. Relative to parental psychol ogical problems, Graces moth er candidly shared her own medical/psychological history:
138 I have Dissociative Identity Disorder. Its a very complicated thing, and has required a lot of time and therapy. I ha ve been on and off meds, although I didnt take them the whole time I was pregnant with her, and that was, well, interesting. I nursed her for 6 months, so I didnt ta ke it for that 6 months. The sleep deprivation was just too much, though, so I had to go back on meds. I weaned her and put her on sippy cups and whatnot, so that I could go back on the meds. You know, you gotta do what you gotta do, and it was what I needed to do. I always do better on meds than when Im off. I have a great therapist who I work with very closely, and I was actually integrated entirely once, but with that being my minds default mechanism for stress, it wasnt very much time with everything we were going through, that I was ha ving a lot of issues again. With regard to problematic maternal re lationship history, Tanks mother shared experiences that could be considered a risk factor for her sons development. She explained: I was in a violent relationship with their fath er. So I had been with his father five years and nothing but domestic violence. Three years before I got pregnant he used to beat me. When I got pregnant, in my fourth year with him, he beat me until I got separated. I dont want to teach my boys that. I dont want my boys to think that its okay, that its cool to hi t a woman, because its not. We dont have it in my home, so you know when kids get ol der, and they get in that stage, they will learn. And in school, they pick up a lot of stuff. Some things in school, you wouldnt believe what they learn, but they do. Theres a lot of stuff they see,
139 watching kids fight, kids shoot, all of that stuff. Just a lot of it in society. Its like, I knew him, I knew him. Oh my God. Although Tanks mother candidly acknowledged th e fact that she had a temper and had been in a problematic relationship in the pa st, she expressed concern with its impact upon her son. After getting out of an allegedly abusive relationship, Tanks mother indicated that she did not want her child ren to be exposed to such violence, despite her perception that violence is increasing in society. While his mothers awareness of these circumstances may help protect or shun his expos ure to such circumstan ces, the fact that Tanks mother has had a problematic rela tionship and his fath er engaged in poor parenting practice serves as a risk factor for his development in the future. Finally, several parents disc ussed situations that presented challenges to their existing set of parenting skills. Parents consistently expressed a desire for both additional strategies and support from others in lear ning how to effectively provide nonaversive discipline and structure for th eir child. For example, two of seven parents discussed occurrences of spanking. Tanks mo ther shared such a situation: When I tell him something to do, he tell me No or hed start biting. One time, he used to slap me and hit me. I had to put a stop to that. He knows that he cant hit me. Im the momma. If theres a nybody thats going to be doing the hitting, thats going to be me. And I dont hit hi m, I spank him when its needed. You know, it used to be that I let him get away with a lot of stuff. But I mean, hes still a child. Sometimes I think hes pi cking up on what I do. And I have a bad temper.
140 Similarly, DJs maternal grandmother shared a story about her effort to dissuade her daughter from spanking DJ. DJs grandmothe r made a decision to use a more prosocial strategy to help her grandson manage his beha vior, and wanted to teach her daughter a set of more functional parenting strategies. She remarked: DJ is in his formative years, where th e stability and consistency is going to change his behavior for life. And the othe r part is she believes in spanking. She doesnt spank abusively, like shell take her hand and pop his butt, but hell cry all of three minutes, and go back and throw the same thing on the floor. And Im telling her, When are you going to get it? DJs already understood that spankings not going to change the way he thinks, but you havent gotten it, so youre continuing to spank DJ. Thats not working. We had a discussion as recently as this morning about the spanki ng. Her whole attitude is that, Hes two. Im the mother and hes not going to run the house, when the reality is that your two year-old runs your house, becau se you need to operate around your two year-old, and make things healthy and form his future. Exosystem Level While Huffman and her colleagues did not identify any risk or protective factors at the macrosystem level, they reported that immigrant status, minority status, and low SES represent risk factors at the exosystem level. Given the fact that zip codes were the sole indicator of SES for part icipants in this study, additional information would need to be collected to draw such conclusions. Relative to the other two risk factors, each child was born in the United Stat es, and four of the se ven child participants were of African American ethnicity. Therefore, four of the child part icipants in this study
141 have a risk factor at the exosystem level due to how people are differentially served, perceived, received, and allowed access and opportunities. Chronosystem Level Huffman and colleagues did not discuss risk factors inherent to the chronosystem le vel. Given the fact that chronosystem refers to the sequence or pattern of events that impact a childs developmen t (Berk, 2002), it would appear that there are three ways by which the passage of time may place a child at-risk: 1) the relative age at which the childs con cerns are identified and diagnosed; 2) the time that passes between the point in which concerns are first identified to the time in which a diagnosis is rendered; and 3) the time that passes between the point in which a diagnosis is rendered to the time in wh ich services are initiated. With regard to the age at which the child participants concerns were identified and diagnosed, four of the se ven participants (i.e., Bri, Darnell, Andrew, Tank) were either first diagnosed or awa ited an initial diagnosis after 36 months of age (average = 36.75 months, range = 36-39 months). Alt hough the children are young, the average age at which concerns were fi rst identified was 17.5 months (range = 6-36 months). Relative to the second scenario, six out of eight participants c ited concerns with delays in receiving an accura te diagnosis for their child. For example, Andrews mother discussed a conversation she had with her pedi atrician while trying to obtain a formal diagnosis for her son: (The pediatrician) finally decided th at instead of sending him to a child development specialist with that waiting list, maybe he could see a neurologist. She notified me that the waiting list woul d be only two or three weeks, and it would be a lot easier. I asked her why she didnt recommend that before. No
142 response. So then, of course, I had to call and set that up. The pediatricians office, weve always had problems. They never want to do any work. I didnt mind, I called to set the appointment up. Tw o days before we were leaving to go to Minnesota, we finally got in. I expl ained all of the problems that we were having with the pediatricians. The ne urologist was appall ed. He could not believe it had taken two years for a pediatri cian to finally realize that there was a problem and to recommend getting him in somewhere. He was very upset. He told me that my son was clearly and severely autistic. Similarly, Darnells mother discussed her e xperiences and challeng es trying to get her childs pediatrician to speak to her. In Da rnells case, his mother experienced frustration and difficulty while asking her pediatrician about whether Darnells eczema could have led to subsequent developmental delays: So I called recently to inquire about Darnel ls history with her, if she thought I should get him screened (this was prior to the screening), if she thought that that condition may have caused any developmental delays. She didnt call me back. She had her medical assistant call me back, and I explained to her medical assistant, the patient, who I was, what the problem was, and if the doctor could return my call so that I could ask some questions re garding some developmental delays that he may have experienced as the result of the chronic eczema. I mentioned that at the time, she was his pr imary care. I asked if she would just touch bases with me; to tell me if that wa s even likely. I wanted to know if she thought eczema could have caused speech delays. She wouldnt call me back. She told her medical assistan t that I would have to bri ng him in and I explained to
143 her that I no longer lived in the area. I dont drive. I wouldnt be able to get in. I dont have car insurance, etc. She refused to even return my call. So it was then that I kind of went on my own. I started to call the university and some other places, mentioning that I had been referred by other professionals to the university because he was not engaging in any social activities, he was not talking, or using his skills. That was a critical time fo r him. It was a critical stage in his development. The experiences of these two parents illustrate the fact that there was a delay in the time by which concerns were identified, dia gnosed, and services were provided. The following two quotes serve to ill ustrate the third scenario for a chronosystemic risk factor: The passage of time between the point of diagnosis to the time in which services are initiated. In the first example, Tanks mother discussed her experiences trying to set up appointments with her sons speech ther apy provider, It was hard trying to set up an appointment at (provi der). Every time I woul d call, I would leave a message or they wouldnt call. In the second example, DJs grandmother discussed the possibility that her son would soon be included in a behaviorally-oriented parent support group: Its been said that we would go for six weeks, for every Tuesday from 6-8 p.m. starting (date) where it woul d be other parents with somewhat the same type of background, like if we were all from up north. Were from New York, Brooklyn. They would try to use families that have the same type of backgrounds and cultures, somewhat close in age, to work together. They woul d discuss what their challenges have been with their childr en, and we would discuss our challenges
144 with DJ, and we would get ideas. It would be based on backgrounds, cultures, ages, so that we would all be able to use that information that we pull together to help one another through the challenges of a child with behavior problems. That will be a wonderful thing, so were hoping th at will be something that we can take part in starting Tuesday evening. And we will do the whole six weeks, and other programs that come up. We want to be part of anything thats going to give us the support we need and the knowledge and skil l for DJs growth, but it will also be something that DJ can participate in, w ith children who are like him. Maybe eventually well be able to eventually find out what his IQ is, what things we would need to build on for him to achieve wh at we see as the direction that he is strongWe want to build on his strengths because he could go one way or the other. If hes a very intelligent child and he chooses evil per sebad thingshe could go as far as the east is from the west so what we need to do is to continue to watch. Pay close attention so we can take those strengths and put them in good things, to help people, and share with pe ople moral values and everything instead of that I can get over quickly because I am so smart and I can use people with weaker minds and get them to do what I wa nt them to do. So thats going to be a challenge for us, but we need to get ahead of it so that we can know where to put him. Though each parents experience was distinctly different, bo th experienced frustration regarding the length of time that passed befo re services were provided. Tanks mother experienced difficulties scheduling speech th erapy appointments with her sons speech therapy provider, whereas DJs grandmother had been eagerly awaiting enrollment in a
145 behaviorally-oriented pare nt support group. These il lustrations underscore the importance of having resources to help parent s and caregivers balanc e risk and protective factors at early stages of development, not just focusing solely upon medical issues. Summary of Questions Two and Three An analysis of the data obtained in this study revealed several risk and protective factors per child. Risk a nd protective factors were id entified at the individual, microsystem, and chronosystem levels. In addition, demographic data may suggest the presence of exosystemic risk and/or protectiv e factors associated with SES, although data collected at this time are inadequate to draw a more firm conclusion. Across participants, a pattern was identified where children were subject to a greater number of risk factors than protective factors. However, each of the children were required to demonstrate challenging behavior as part of the inclusion criteria for this study. Consequently, the entire sample of ch ildren in this study can be considered atrisk as a result. In light of such concerns, as well as the fact that each individuals developmental history (i.e., medical, fam ily, social, developmental) inevitably contributed to the manifestati on of these behaviors, each of the seven children had been subjected to a greater number of risk factors. This finding is particularly important given the fact that the behavior of young children w ith challenging behavior is likely to be maintained by either increases in the number of risk factors and/or decreases in the number of protective factors. In addition to these findings, it is importa nt to acknowledge the contextual nature of risk and protective factors themselves. C onsidering each of thes e factors in isolation, it is possible for individual ch ildren to be considered both protected and at-risk for
146 the same risk factor [(e.g., childcare provided by someone other than the mother vs. high quality child care); difficult temperament and personality (e.g., aggression, hyperactivity vs. easy temperament and personality)]. For example, a child who exhibits aggression in some situations (e.g., community outings) might be described as easy going and friendly in other situations (e.g., playi ng at home). As a result, one cannot simply compare and contrast lists of identified risk and protective factors; it is the ecological context in which they occur that meaningful conclusions can be drawn. The importance and implications of these findings and those of question one were subsequently addressed in the next chapter relative to both the needs of young children and their families (e.g., Hebbeler et al., 2001; Powell, Fixsen, & Dunlap, 2003) and ex isting research on local service delivery system (Raffaele Mendez & Hess, 2003).
147 Chapter Five Discussion Review of Research Questions The results of this study i ndicate that the sample of parents of young children with challenging behavior in Hillsborough County, Florida shared not only many similar experiences, but also reported comparable risk and protective f actors impacting their childs behavior. In order to appreciate the findings of this st udy, however, it is first necessary to consider the research questions from which they were derived. Specific outcomes were linked to the research questi ons as they are presented. Findings for question one were both summarized and presen ted relative to each of the assumptions that were made by this researcher, while findings of questions two and three were presented together to facilita te discussion of the inter-rela tionships between the risk and protective factors repor ted in this study. Research Questions Research Question One: What are the exper iences of parents obt aining services for young children with challenging behavior living in Hillsborough County, Florida? The purpose of the first research questi on was to give voice to parents of young children with challenging behavior in H illsborough County, Floridato provide them with a venue in which to shar e their experiences raising thei r child. Data were compared
148 relative to both reported experi ences and assumptions articulated by this researcher prior to data collection in the bracketing interview. Relative to these assumptions, the findings are presented by category in Appendix I. Parent interview data verified each of the five assumptions, indicating that parents of young children with challenging behavior sh are a number of common stressors. These stressors included obtaining accurate and usef ul information about their child, obtaining services and supports, managing financial stre ssors associated with their childs care, strained family relationships, and community isolation. At th e pattern level of analysis (LeCompte, 1999), subcategories were identi fied for three of the five assumptions, whereas the other two consisted of a single category. Each is described below in further detail. Obtaining information about challenging behavior. When asked about difficulties obtaining information about their ch ilds challenging behavior, parents shared three different types of problems: 1) receiving accurate and useful information from their pediatrician about their childs beha vior; 2) difficulties obtaining accurate medical/developmental diagnoses from their pe diatrician; and 3) le arning more about their childs challenging behavior from the Internet than fr om a medical professional. While medical professionals (e.g., physicians, physicians assistants, nurse practitioners, nurses) are well-trained to tr eat pediatric medical and/or developmental conditions, they typically do not receive comprehensive traini ng on their behavioral, educational, and psychological components (Power, Heathfield, McGoey, & Blum, 1999; Roberts, 1995). The findings of this study would appear consistent with such research. Parents consistently reported that their pediatrician did not provide adequate information about
149 their childs challenging behavior. This c ontributed to two different categories of difficulty for parentsone associated w ith obtaining information for their own consumption and understanding, and another as sociated with the confidence of an accurate and timely diagnosis. Parents consiste ntly identified concerns with their childs behavior that were typically formally diagnosed six to 12 months later. Though pediatricians provide care with the best pr actices in mind, it is also possible that the latency by which diagnoses are rendered may al so be attributable to many other factors (e.g., gaps in the medical professionals trai ning, difficulties in scheduling appointments). While it is neither possible nor appropriate to infer a mo re precise conclusion, it is reasonable to hypothesize that gaps in the me dical professionals training may contribute to delays in a childs diagnosis and subsequent services. Pa rents of children with autism spectrum disorders often report such concerns, as exemplified by one of the participants in this study (i.e., Andrews mother). In addition to these concerns, the re lative ease by which parents can access information also appears to serve as an area of concern. Although parents commonly reported using the Internet to research basic as pects of their childs care (e.g., side effects of prescribed medicines, pa renting advice, symptoms of colds and other illnesses, condition-specific information), th ere is an inherent risk a ssociated with a reliance upon such information. Whether the information re lates to education, me dicine, behavior, or another discipline, information obtained using the Internet is only as re liable as its source, and as a result, is best cons idered a supplement to professi onal advice. Given the fact that parents in this study re ported difficulties not only with community isolation but also with accessing services and suppor ts, it is not surprising that such a finding was obtained.
150 In such circumstances, the In ternet may serve as an even more important resource to parents and caregivers. However, the impli cations of such a finding are important to consider, especially in the event that a parent considers alternative treatments or medicines for a child who is already under the care of a physician or other professional (i.e., contraindications, medicati on or chemical interaction eff ects). While the Internet is an empowering resource for many parents, it also is replete with inaccurate or incomplete information. Such circumstances place an even greater value upon effective communication between parents and professiona ls, an important mesosystemic risk or protective factor. Obtaining services and supports. Each of the parents in terviewed in this study each reported difficulties obtaining services a nd supports for their children. Specifically, parents shared experiences relative to thei r difficulty identifying providers within the community, setting up appointments, receiv ing quality assessment and intervention services, and avoiding prolonged lengths of time with delays in service. These findings are similar to those reported by researchers at both the local and nati onal levels (Bailey et al., 1998; Bailey, Scarborough, & Hebbeler, 2003; Grosz et al., 2000; Powell, Fixsen, & Dunlap, 2003; Raffaele Mendez & Hess, 2003), as well as with individuals (e.g., Duda, Dunlap, Fox, Lentini, & Clarke, 2004; Dunlap & Fox, 1999; Fox, Benito, & Dunlap, 2002). Relative to the local level, Raffaele Mendez and Hess (2003), reported that parents of children birth to age thre e residing in Hillsborough County, Florida experienced frustrations with both enteri ng and navigating through the local service system. With respect to the service system for children birth to three at the national level, experts in the field reviewing the state of service delivery systems for young children
151 with challenging behavior cited the following concerns: 1) screening and identification lacks an adequate empirical base; 2) exis ting referral systems need more effective linkages to available services in the commun ity; 3) services and s upports are provided on an inconsistent basis across the nation to children and families; and 4) federaland statelevel policies are needed to regulate screeni ng, identification, referra l, and services for young children with challenging behavior (Powell, Fixsen, & Dunlap, 2003). Consequently, difficulties reported by parents seeking services and supports for their young children in this study reflect not only ri sk factors at microsystem level of the ecological model but also at the mesosystem (e.g., quality of communication between the childs family and community providers and agencies), macrosystem (e.g., federaland state-level policies), and chronosystem (e.g., th e amount of time that passes between the time when concerns are identified, the child receives a diagnosis, and services are provided). Given the fact th at these types of concerns have been acknowledged in the research literature on a conceptual basis and targeted for change through a familycentered model of service delivery, it would a ppear that the findings of this research study may be useful as a rationale for future ap plied research efforts at the local level, as well as program planning, adjustments to prog rams, and training efforts (e.g., Bailey et al., 1998, Guralnick, 2000; Smith & Fox, 2003). Financial stressors. Parents of young children with challenging behavior reported that their childs challenging behavi or created two different types of financial stress, the first pertaining to financial expe nses and the other refl ecting stress associated with career. Parents consistently reported th at their child required a number of costly products or services, including medications, health insurance, daycare or preschool,
152 and/or high quality produce. In addition to th ese costs, parents often reported difficulties coping with the increasing cost of gasoline, as their childs needs often forced the parent to drive prolonged distances (e .g., to attend medical appointmen ts, find stores with better prices, commute across the city to a more affordable daycare center). With regard to health insurance, parents reported not only having difficulties with insurance premiums and co-payments but also with affording expe nses that are rejected by health insurance companies (e.g., speech-language therapy for ch ildren who have not yet learned to speak, applied behavior analysis). Given the fact th at child care costs continue to increase, as do the relative cost of goods and se rvices, it appears that the fina ncial strain associated with such changes may be magnified for parents of young children with challenging behavior due to the fact that they re quire more care and support. The second category associated with fina ncial stress pertains to difficulties balancing ones career with the high dema nds of raising a child with challenging behavior. Although some parents interviewe d in this study reported that they had a flexible work environment (e.g., parents who worked a portion of their day at home, parents who had an on-site daycare at their place of employment), others who did not have such accommodations reported feeling a hi gh degree of stress associated with their childs needs. Bris mother reported high rates of absentee ism or tardiness due to the need to take their child to medical appointments or to take care of their child when ill. Both Andrew and Darnells mothers reported that in light of their desire to do so, they were unable to keep a job due to the high demands associated with their childs care. Although each of the children in this research study exhibited challe nging behavior, each child either had reportedly experienced episode s in which they were chronically ill or
153 exhibited challenging behavior secondary to a primary medical condition with a complex array of symptoms (e.g., Williams Syndrome, eczema, pervasive developmental disordernot otherwise specified, asthma otitis media, gastroesophageal reflux, bronchitis, ventricular septal de fects). Given the fact that these children all required a greater frequency, intensity, and duration of treatment and professional support than peers their age, the parents w ho participated in this study of ten reported that their childs needs made it extremely difficult to effectivel y balance and manage their own careers. The financial stressors reported by the pare nt participants of this study appear consistent with findings reporte d in the research literature. For example, Abelson (1999) reported that there was a relationship between a childs age, severity of disability, and their parents ability to earn money. Not only did parents report missing hours of work, they also reported having to refuse opport unities to work due to their childs need for continued support and care, particularly fo r younger children and children with severe disabilities (p. 881). Data from both studies support the contention that parents of young children with challenging behavior are more likely to experi ence these types of financial stressors. Relative to the eco logical model, these data woul d likely magnify the impact of exosystemic risk or protective f actors associated with SES. Strained family relationships. Data obtained relative to the fourth assumption reflect experiences of stress among family members resulting from the childs challenging behavior, a finding th at has been consistently reported in the research literature (e.g., Huffman et al., 2001; Ingoldsby, Shaw, Owens, & Winslow, 1999; Koegel, Koegel, & Dunlap, 1996; Landy, 2002). Within the limits of this study, parents reported a variety of strained family relati onships including sibling conflicts with the
154 individual child participant in this study, marital conflicts between the childs parents, marital conflicts between the childs grandpa rents, and conflicts between the childs parents and grandparents. A microsystemic risk factor, it appears that families of young children with challenging behavior may be at an elevated risk of experiencing stress between family members. The most frequently reported type of stra ined relationship was between the childs mother and father. Pare nts varied relative to their current marital status (e.g., single, separate d, divorced, remarried, married ), and as a result, their experiences differed. Several mothers discusse d the lack of support (e.g., financial, time spent with children) they received from thei r childs father. On e parent discussed a complex legal struggle with he r ex-husband, another shared th at her ex-husband had been incarcerated and received treatment for substa nce abuse, while another mother disclosed the fact that she had been physically abused by her childs father. These experiences contrasted sharply with those reported by the parents in the study who were married. Not only did these parents report a greater degree of support for each other, but they also shared more examples of a more stable, organized and predictable home environment (e.g., predictable routines and sche dules, consistent inte raction styles with their children). Community isolation. Parents of young children w ith challenging behavior reported experiencing two different forms of community isolation. The first category of isolation entails a parents diminished acce ss to friends as a result of their childs challenging behavior, whereas th e second category refers to a parents relative isolation from recreational activities and support services. While it is true that all parents lead busy and involved lives, young children with challenging behavior may exacerbate such circumstances. Young children who exhibit ch allenging behavior in community settings
155 often draw attention from othe rs, embarrassing parents as a re sult. Almost every parent reported experiences in which they felt e ither embarrassed or singled out by other children and adults when their child exhibi ted challenging behavior in the community (e.g., eating at a restaurant, groc ery shopping, shopping at the mall). In addition, six of eight pare nts reported a degree of is olation from the community as a result of the severi ty of their childs behavior or il lness. Two parents reported that their child had been either kicked out or were at-risk for being kicked out of their daycare/preschool for exhibiting challenging behavior. Additionally, several parents reported that their friends either expressed interested in spending time with them away from their child or decreased the frequency of their contact with the parent altogether. Contrary to these types of experiences, resear chers have suggested th at inclusion, such as opportunities to form meaningful relationships with individua ls, join and contribute to social groups, and opportunities for community integration are instrumental for familys quality of life (i.e., charac teristics of well-being, positiv e social involvement, and opportunities to achieve pers onal potential) (Schalock, 1994; Turnbull, Turnbull, Wehmeyer, & Park, 2003). In the case of pa rents participating in this study, family quality of life remains elusive, but no less important or worthy of achieving. Summary. The findings obtained in this st udy suggest that parents of young children with challenging behavior share many similar stressful experiences. Parents of young children with challenging behavior reported difficulties obtaining accurate and useful information about their child (e.g., information about thei r childs behavior, diagnosis, information from the Internet), obtaining services and supports, managing financial stressors associated wi th their childs care (e.g., expe nses related to their childs
156 behavior, career-related stressors), strained family relationships, and community isolation (e.g., isolation from friends and neighbors, limited access to recrea tional activities and support resources). Although each parents experience differed relative to each reported area of difficulty, the parents interviewed in this study repo rted a level of stress and difficulty that may exceed that which is typically reported among parents of young children who do not exhibit ch allenging behavior. Whethe r related to their childs behavior directly (e.g., services and supports, strained family relationships) or indirectly (e.g., career-related stressors, community is olation), the parents of young children with challenging behavior interviewed in this study were consistently faced with a barrage of stressors, each with a relatively high degree of intensity and impact on their family. Although similar findings have been reported el sewhere in the resear ch literature (e.g., Fox, Vaughn, Wyatte, & Dunlap, 2002), the findi ngs of this research study are unique relative to the specific to age range of the children discusse d in this study (i.e., Fox and her colleagues studied parental experiences raising children ages three to 12 years). Despite this difference, both studies ac knowledged the value of receiving support from caregivers and professionals, as well as the pe rsistent impact of their childs behavior upon the familys overall functioning (e.g., family relationships, access to the community, financial resources social networks). Research Question Two: What types of protective factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, ch ronosystemic) are perceived by parents to positively influence the experiences of young ch ildren with challenging behavior living in Hillsborough County, Florida?
157 Research Question Three: What types of risk factors (i.e., microsystemic, mesosystemic, exosystemic, macrosystemic, chronosystemic) are perceived by parents to negatively influence the experiences of young childre n with challenging behavior living in Hillsborough County, Florida? The data obtained in this study suggested that each family possessed multiple factors identified in the literature as being c onsistent with either re ducing (i.e., protective factors) or increasing (i.e., ri sk factors) the frequency, dur ation, and/or intensity with which challenging behaviors are exhibited by you ng children. Such factors were reported at the individual, microsystemic, exosystemic, and chronosystemic levels of the ecological model. More specifically, data indicated that the families participating in this research possessed a greater number of risk fact ors than protective factors. Such findings were to be expected, in addition to the fact that an inclusi on criterion for participation in this research study was that the childs chal lenging behavior was pe rceived by parents or guardians to interfere with or is at risk of interferi ng with optimal learning or engagement in prosocial inter actions with peers and adults (Powell, Fixsen, & Dunlap, 2003). While the entire sample of children in this study is considered at-risk, the degree to which they are at-risk appeared to be exacerbated by the additional risk factors that have been reported within each individual family (e.g., family composition, parental substance abuse, poor parenting prac tices, childcare by someone other than the childs parents). As a result, it appears that once a child begins to consistently demonstrate challenging behavior, the more likely it is that additional risk factors impacting the family will contribute to furt her escalation in challenging behavior (e.g., ineffective or aversive parenting practices, problematic relationships, financial stressors).
158 This circular relationship may, in part, offe r an explanation as to why it is often so difficult for parents of young ch ildren with challenging behavior to effectively manage their childs behavior on a cons istent basis. Additional rese arch in this area may help clarify the relationship and interaction between such variables that have been discussed in this study and in others (e.g., Broidy et al., 2003; Huffman et al., 2001; Landy, 2002; Rutter et a., 1997). Looking further at the relationship between risk and protective factors, it appears that the ecological context in which these f actors occur is of e qual importance to the specific risk or protective fact ors that are reported. Considering each of these factors in isolation, it is possible for i ndividual children to be consid ered both prote cted and atrisk for the same risk factor [(e.g., childcare provided by someone other than the mother vs. high quality child care); difficult temp erament and personality (e.g., aggression, hyperactivity vs. easy temperament and personal ity)]. For example, a child who exhibits aggression in some situations (e.g., community outings) might be described as easy going and friendly in other situations (e.g., playing at home). As a result, one cannot simply compare and contrast lists of identified risk and protective factors; it is the ecological context in which they occur that meaningful conclusions can be drawn. This is why professionals providing support to young child ren with challenging behavior using an ecological framework would be better able to pinpoint the specific instances in which a child or family would benefit from support (e .g., trips to a specific store or restaurant; providing coaching not only to a parent, but also to the childs grandmother; training professionals who conduct both developmental screenings and evaluations rather than simply focusing on the latter). Though genera lization beyond the par ticipants of this
159 study is not advised, the practic al utility and logic of such a finding may, in fact, support changes in the behavior of both individual providers a nd the local service system. With regard to the local service system the findings of this study strongly support those obtained by Raffaele Mendez and Hess (20 03). In their analysis of communitybased services and supports for children and young adults with special needs in Hillsborough County, the authors reported that pa rents of children birth to three faced challenges with respect to: 1) proper diagnosis; 2) acquiring accurate medical information; 3) entering and navigating the sy stem of care; 4) balancing work and care for the child; and 5) getting support for oneself (Raffaele Mendez & Hess, 2003). The findings of this study not only confirmed Raffaele Mendez and Hesss findings but obtained examples suggesting that these cha llenges may be magnified for families who have young children birth to thr ee with challenging behavior. These findings also corroborate with those reported at the national level. Powell, Fixsen, and Dunlap (2003) ar ticulated concerns with the national system of care for young children with challenging behavior. The authors reported several important findings: 1) the health care system remains the primary gateway for identification, screening, referral, and access to services for young children with challenging behavior; 2) young children with challengi ng behavior tend to use servic es at a rate that is lower than the projected need; 3) service ut ilization for young children with challenging behavior is largely determined by medical professionals; 4) the availability of services for young children with challenging behavior is impacted by family factors, education, race/ethnicity, and socioeconomic status; and 5) family-centered practices and a broader approach to young children with challenging beha vior is needed in preschool and daycare
160 settings (Powell, Fixsen, & Dunlap, 2003). Parents interviewed in this study reported experiences consistent with these trends in service delivery. All seven families relied upon their pediatrician and/or medical speciali st as the primary source of information and point of access into the servic e delivery system. Parents also tended to follow their pediatricians recommendations for interven tion (i.e., some parents also considered homeopathic or nutritional interventions), a decision which is largely dependent upon the pediatricians knowledge of both intervention options and available service providers. Similarly, parents consistently reported th at they faced obstacles accessing available services for their children, albeit for financ ial reasons (e.g., the cost of medications, outof-pocket expenses for behavior analysis providers, insurance co-payments) or for reasons associated with serv ice providers (e.g., lack of av ailable provider s, scheduling difficulties and waitlists for existing providers, preschool or daycare settings reporting that they are not capable of managing a young child with challenging behavior). Considering the findings of this study relative to other areas within the existing literature base, it is clear th at the process of identifi cation, screening, assessment, diagnosis, referral, and intervention is not a st atic process. Resear chers have argued that in the case of children birth to three, one of the basic principles of early intervention is that earlier is better. (Dunlap & Fox, 1996; Hebbeler et al., 2001; National Research Council & Institute of Medicine, 2000). Give n the strength of the available evidence within the literature base, it is reasonable to question whether the greate st type of risk or protective factor is the chronosystem itself. Referring to the passage of time, parents interviewed in this study app eared to have qualitatively diffe rent experiences and support systems when the chronosystem served a prot ective role (e.g., the le ngth of time between
161 the time in which parents identify concerns, the child receives a di agnosis, and services are initiated). While this is an area in wh ich we may learn more with further research, further investigation into the chronosystem may help professionals understand the relationship between the passage of time and parents experiences. For example, research may help clarify whether or not there are differences in the experiences and outcomes between parents of children birth to three whos e services are initiated prior to 12 months than those whose services are initiated after 24 months of age (e.g., differentiating between delays in the time in which pare nts recognize concerns, delays in obtaining diagnoses and referrals targeting such concerns, delays in subse quent service delivery, and/or differences in both the type and clin ical presentation of a childs disability or developmental delay over time). Limitations It is important to recognize the limitations inherent to this stu dy. First, the studys generalizability, or the degree to which findings can be applied to others, is limited due to both the studys small sample size and the assume d influence of this researchers role as an interviewer. While this researcher served to act as an interested sponge, the role of both the researcher and the context in wh ich phenomenological re search is conducted must be acknowledged. However, this researcher wrote an a pr iori description of his own experiences thereby allowing him to bracket his experiences from those of the studys participants (Janesick, 2000; Marshall & Rossman, 1989). As a result, the reader is able to compare and contrast this researchers valu es and experiences direct ly to the stories of the parent participants.
162 A second limitation pertains to the diversity of the sample obtained in this study. A total of four participants describing their race /ethnicity as Caucasian and four as African American were included in this st udy. In addition to th ese two racial/ethnic groups, the Hillsborough County region also includes many people who describe their race/ethnicity as Hispanic. Participants in this study did not incl ude this racial/ethnic group, which consequently, serves as a limitation to this study. Howeve r, this is not to say that this researcher did not seek out opportunities to re ach out to parents of this racial/ethnic group; efforts were made to connect with these pa rents using purposeful sampling (e.g., asking referral sources if any of them knew of any families of a Hispanic ethnicity who also met the inclusion/excl usion criteria for the study who might be interested in partic ipating, extending the window of time in whic h participants were screened for participation). Despite such efforts, researchers have reported similar challenges in obtaining the voi ce of people from specific r acial/ethnic groups (King & Goodwin, 2002). In the case of some families, extra effort is required in order to effectively reach out to some parents, incl uding: 1) planning a series of parentprofessional seminars or team-building activ ities based on survey/in terview findings; 2) using professionals proficient in multiple la nguages; and 3) generating multiple ways for parents to become informed about specific activities (e.g., television, radio, newspaper, flyers) (King & Goodwin, 2002). Though such efforts are beyond the scope of this dissertation, it is possible that the findings of this study would have been enhanced had there been opportunitie s to include the voice of parents with a Hispanic racial/ethnic background. Given the fact that several fam ilies participating in th is study experienced difficulties with interpersonal communicati on with other family members and/or
163 providers in the community, it is reasonable to question whether the difficulties with interpersonal communication for families of minority racial/ethnic groups may be exacerbated further. Such difficulties may magnify or compound the challenges and difficulties associated with raising yo ung children with challenging behavior. Limitations also exist relative to errors a ssociated with bias and subjectivity. As Stoecker (1991) suggests, all research involves a creative leap from data to explanation (p. 93). In this regard, this st udy is limited due to its subjectivity. However, it is equally important to acknowledge the fact that efforts were taken to ensure an adequate degree of rigor, precision, and credibilit y. In addition to the aforem entioned bracketing interview, the following steps were taken to ensure rigo r: the rationale for the study was anchored in a well-researched and em pirically-supported theory of child development (i.e., Bronfenbrenner, 1986), a standardized da ta collection proce ss was used across participants, a pilot study was conducted, transc ripts of the first inte rview were presented to parents at the second interview to allow fo r reflections and subse quent revisions, data analysis findings were discussed with anothe r doctoral candidate trained in qualitative research methods, and data analysis findings were presented and reviewed to members of the doctoral committee (e.g., Drs. Keller, Nesman, and Raffaele Mendez). A number of issues pert aining to transcription an d reduction also limit the findings of this study. First, interviews were audio taped and later transcribed for subsequent data analysis. A lthough it is likely to be small, one could argue that a small degree of error could be attributed to occasiona l deteriorations in the quality of audiotape playback (e.g., ambient background noise, pr esence of children and other adults in background). A second limitation pertains to the use of voice recognition computer
164 software in this study. Using a procedure called shadowing (Newman, 2002), this researcher played back a segment of the audi o taped interview, paus ed the tape, and then dictated the text verbatim into a computer using Dra gon NaturallySpeaking 6 voice recognition software. Although an effective transcription procedure, some degree of error must be assumed as audio taped text is verbally dictated into the software program. In this regard, opportunities for error exist as the researcher both repeats the audiotape and the computer program interprets the res earchers language into typed text. While participants had an opportunity to review segments of their own transcript as a means of preserving the accuracy and credibility of thei r voice, it is possible that transcription errors could potentially change the meani ng of a respondents statements. Implications for Future Research and Practice In spite of its limitations, this study offe rs several contributions to research and practice within the field. From a research standpoint, the most im portant contribution is that it provided illustrations of the experiences of parents of young children with challenging behavior living in Hillsborough County, Florida. Prior to the initiation of this study, relatively little information wa s available documenting the experiences of these families (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005). Likewise, the most important contribution toward future practice is the direct benefit to the parents and guardians who participated. Given the fact that one of the central themes identified in this study was that pare nts/guardians of young children with challenging behavior experienced a high degree of isolation, the opportunity alone for parents to share their experiences may be of direct benefit. Not onl y did several participants express interest in the results of this study, but one mother commen ted that it will be in teresting to know if
165 other parents have had similar experiences as I have. Many of the parents experiences were, in fact, similar to others who participated in this study. As a re sult, this researcher will follow-up with parent pa rticipants upon completion of this study. Parents will receive both a copy of the presentation used at this researchers di ssertation defense, as well as a link to the study once it is published electronically by the University of South Florida. Such information may not only validate an individual pare nts experiences but also has the potential to reduce the degree to which a parent feels a sense of community isolation. In addition to providing parents with an opportunity to expres s their voice, other research-related benefits include both the pot ential expansion of categories of risk and protective factors (i.e., the assumptions and categories de scribed in this study). Assumptions and their theoretical categories were verified over the course of the study that were driven by both the ecological framew ork and this researchers own professional experiences (i.e., the bracketing interview) Given the many changes that occur in society, consideration of issues such as acce ss to information from the Internet may not only help researchers expand the conceptualiza tion and theoretical framework of risk and protective factors, but potentially drive future research efforts (Tzeng & Kackson, 1990). At the community level, the findings of this study can be seen as an extension or complement to research previously conduc ted by Raffaele Mendez and Hess (2003). The authors investigated community-based se rvices and supports for children and young adults with special needs in Hillsborough County. In contrast to their study, which employed a mixed method research design to assess the system of care up to age 24 years, this study used qualitative methodology to provide a more detailed analysis of
166 parents of children birth to age four with ch allenging behavior. Across the two studies, a number of similar findings were obtained (e .g., parents experienced stressors associated with obtaining a proper diagnosis accurate and useful medical information, entering and navigating the system of care, balancing work and care for the chil d, and getting support for oneself), thereby enhancing the credib ility of the findings for both studies and providing a more solid rationale for preven tion-oriented systems change within the community. On other occasions, the findings of the study differed or were extended (e.g., difficulties obtaining services and suppor ts, financial stressors, family stressors, community isolation, and risk/protective factor s). Together, these st udies offer parents, community providers, administrators, and pol icy makers specific information about a group of children and families within the county who traditionally tap a disproportionately higher portion of services and fiscal supports. Similarly, the findings of this study may refl ect a gap in the efficiency of the local service system. Parents interviewed in th is study consistently reported that their pediatrician served as either their primary or sole entry point into the local service system. At the same time, parents also indicated that they were generally dissatisfied with the quality of the information they r eceived regarding their childs challenging behavior at the point of either receiving general advice from their pediatrician or when a formal diagnosis was rendered. Although some re searchers, particularly within schools, suggest that the school system is also an entry point into the serv ice system for children and youth with chronic health problems (e .g., Power, Heathfield, McGoey, & Blum, 1999), this appears to be less of the case for parents of young children with challenging behavior living in H illsborough County, Florida. Consequently, providers and policy
167 makers in the region may wish to consider these findings as evidence supporting the need to provide training in the assessment, dia gnosis, treatment, and re ferral process for young children with challenging behavior. While it is certainly true that there are very high expectations placed upon pediatricians, it is the communitys responsibility as well to both provide and support pediatricians and other medical profe ssionals in tapping into the available research and clinical services that reflect best practices for young children with challenging behavior (e.g., D uda, Dunlap, Fox, Lentini, & Clarke, 2004; Fox & Dunlap, 2002; Powell, Fixsen, & Dunlap, 2003). Another important contribution to the fiel d is that this study contributes to the small but growing literature base in the fiel d of early interventi on/early childhood special education. Though qualitative research stud ies are being conducted with increasing regularity within the field (Sandall, Smit h, McLean, & Ramsey, 2002), the findings of this study contribute to the growing qualitative literature base supporting family-based practices. More specifically, this study serves as a demonstr ation of the utility of the phenomenological interviewing te chnique as an optimal means of obtaining information not otherwise obtained using quantitative or single subject methods. Based on previous experience in the local Part C program, this researcher selected the phenomenological interview technique in order to provide parent s with a venue by which to let others hear their voice and to share meani ngful experiences of raising their young children. Parents were afforded the opportunity to both share th eir stories and to provide case illustrations about the obstacles and supports encountered in the process of navigating through the local service system. Though both phenomenol ogical interviewing and other forms of data collection could be used to address si milar questions (e.g., completing surveys or
168 behavior checklists), the former offers a level of informational detail that may be difficult to obtain otherwise. Conclusions Parents of young children with challenging behavior face many obstacles and challenges. While many of these challe nges may also be common to parents of young children who do not have challenging beha vior, the degree and combination by which they occur can have a significant negativ e impact. Parents of young children with challenging behavior and their families possess many positive quali ties. Although they need to continue to assume the role as the leader and strongest advocate for their childs care, they are not the sole persons respons ible for their childs care and well-being. While the service system in Hillsborough County for young children birth to three is in its infancy, it also shares responsibility for the care of these children and is actively working to develop such a capacity by f unding prevention services for young children with challenging behavior and their fam ilies, endorsing the use of evidence-based practices, supporting training and capacity building of local service providers, and advocating for policy and funding strategies designed to optimize the impact and utility of fiscal and human resources (Children s Board of Hillsborough County, 2002). Based on the experiences of the families who elected to have their voices heard, it would appear that this will be time, ef fort, and money well spent.
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194 Appendix A Interview Protocol Interview Protocol Participant _____ Opening Thanks for volunteering to participate in th is research study today. The purpose of this interview is to help me understand the experiences that you and your family went through raising your child. The results of th is study will potentially help other families and providers learn how to continue or improve on the manner in which current services are provided in Hillsborough County. You were selected for participation in this study because you are a resident of Hillsborough County, Florida who is also the parent/guardian of a child unde r age four who demonstrates challenging behavior. Your story will be recorded in order for me to review at a later time to ensure that I am capturing what you are sharing in an accurate and representative manner. Keep in mind that there are no right or wrong answ ers; I am simply hoping to learn more about your experiences, particularly those relate d to obtaining services for your child in Hillsborough County. Before we begin, lets set a few ground rule s. This interview will last up to 60 minutes. We will really try to respect these time limits. Also, I may say some things that sound repetitive, such as tel l me more about that or simply repeating back what you said in order to ensure that I am really understanding your experiences. If at anytime you feel uncomfortable, please let me know, and we can move on to th e next question or
195 Appendix A (Continued) reschedule the interview for a later time. Do you have any questions? If youre ready, lets begin. Question Every parent has a story. Please tell me a bout your story and experi ences as a parent of (childs name). The researcher will used a combination of clarification and paraphrasing in order to ensure accurate understanding of the parent s story. In addition to asking the primary research question, the research er will ask the parent an open-ended follow-up question about topics specified below. For each area, the researcher will ask: Tell me more about ____ or There are a couple of other things I was wondering about. Tell me more about____. Topic Domains and Prompts 1. Pregnancy, labor, and neonata l course (including NICU) Identifying concerns Diagnosis Acquiring useful and accurate medical information from pediatrician Possible prompts: o Tell me about your childs pregnancy.
196 Appendix A (Continued) o Tell me about when you first realized there was something wrong with your child. o Tell me about your experiences with your childs doctor when you realized that something was wrong with your child. 2. Obtaining services for your child Stresses associated with coordination of care Daycare or preschool experiences Early Intervention/Early Steps Program eligibility evaluation Early Intervention/Early Steps Program services and supports Possible prompts: o Tell me about your childs pregnancy. o Tell me about your childs experiences in daycare or preschool. o Tell me about your experiences in the Early Intervention/Early Steps Program. o Tell me about the services and supports your family received from the Early Intervention/Early Steps Program. 3. Impact on parents/family Parents career(s) Financial stressors associated with childs disability Relationships with family members (including extended family) Possible prompts:
197 Appendix A (Continued) o Tell me about your childs difficulties have impacted your career. o Tell me about how your childs difficulties have impacted your personal finances. o Tell me about your opportunities to spend time with other members of your family. 4. Access to community Obtaining support for self (if necessary) Relationships with friends, neighbors Access to the community, transp ortation, religious services Possible prompts: o Tell me about your opportunities to go out into the community. o Tell me about your opportunities to spend time with friends or your neighbors. o Tell me about the opportunities you have to get support for yourself (if necessary). 5. Positive experiences Advocacy efforts Lessons learned Good experiences Possible prompts: o How have you grown from your experiences raising ____?
198 Appendix A (Continued) o What are your childs greatest strengths? o What are some of your most me morable experiences raising ____? While the interview is being audio taped, the researcher will listen and take notes highlighting important statements and reflections. Closing Thank you for participating in this portion of the study. As I had explained previously, I will transcribe the audiotape from this interview and share examples of your interview transcript when we meet next time. At that point, you will have a chance not only to expand on what youve already said, but also to add any additional information about your experiences. Once we finish that task, your role in this study will be completed and I will provide you with the stipend we had discussed previously. Thanks again.
Appendix B Flyer for Participant Recruitment 199
Appendix C Family Demographic Data Form 200
Appendix D Informed Consent Informed Consent Social and Behavioral Sciences University of South Florida Information for People Who Take Part in Research Studies The following information is being presented to help you decide whether or not you want to take part in a minimal risk research study. Please read this carefully. If you do not understand anything, ask the person in charge of the study. Title of Study: Giving Voice To Parents Of Young Children With Challenging Behavior Principal Investigator: Jonathan Worcester, Ed.S., NCSP, BCBA Study Location(s): Parent/Guardians home, preferred community setting, or the University of South Florida College of Education. You are being asked to participate because you are the parent/guardian of a child under age 4 who has challenging behavior, such as prolonged tantrums, aggression, noncompliance, property destruction, self-injury, withdrawal, or screaming. You have also received services for your child through the Early Steps Program (formerly known as the Early Intervention/Part C program) and have been a resident of Hillsborough County, Florida for over 12 months. General Information about the Research Study The purpose of this research study is to document the experiences of parents/guardians of young children with challenging behavior living in Hillsborough County, Florida. Parents/guardians will be given the opportunity to both share their stories and to provide illustrations about the obstacles and supports encountered in the process of obtaining services for their children. Plan of Study As a participant in this study, you will be asked to participate in two interviews. Each interview will focus on experiences raising your child and will be recorded via audiotape. It is anticipated that the first interview will last an average of 45-60 minutes. Upon completion of the first interview, a second follow-up interview will be conducted, where you will be provided the opportunity to review, expand, or make any changes to written transcript segments from the first interview. The follow-up interview will likely last between 30-45 minutes. 201
202 Appendix D (Continued) Payment for Participation You will be provided with a $50 cash stipend as a token of appreciation. These funds will not be withdrawn should you elect to vo luntarily withdraw from this study. Benefits of Being a Part of this Research Study By taking part in this research study, you will have the opportunity to share your experiences raising your child. Through disc ussion of your stories and experiences, you may develop a greater understanding and appr eciation for the magnitude and impact your childs behavior has upon your entire fam ily. Findings may also help community providers improve the quality of services provided to children and families in Hillsborough County, Florida. Risks of Being a Part of this Research Study There are no anticipated risks to participation in this research study. You will control which topics you elect to discuss about your child, as well as how much information you share. You will also have the opportunity in a second interview to review information from the first interview, making any change s you would like in order to ensure its accuracy. Confidentiality of Your Records Your privacy and research records will be kept confidential to the extent of the law. Authorized research personnel, employees of the Department of Health and Human Services, and the USF Institutional Review Boar d and its staff, and any other individuals acting on behalf of USF, ma y inspect the records from this research project. The results of this study may be published. However, the data obtained from you will be combined with data from others in the pub lication. The published re sults will not include your name or any other information that would personally identify you in any way. The information you provide will be kept co nfidential using unidentifiable codes. All information will be stored in locked filing cabinets, and will not be discussed with anyone outside of the research team. Volunteering to Be Part of this Research Study Your decision to participate in this research study is comple tely voluntary. You are free to participate in this research study or to withdraw at any time. There will be no penalty or loss of the financial compensation you are en titled to receive if you stop taking part in the study. Your decision either to participate (or not to participate) will in no way affect the services received from either the Early Steps Program, the Early Intervention Positive
203 Appendix D (Continued) Behavior Support program (EIPBS), Infants and Young Children of West Central Florida (IYC), or through the Florida Diagnostic Le arning Resources System (FDLRS). Questions and Contacts If you have any questions about this resear ch study, contact Jonathan Worcester at (813) 382-2056 or Dr. Linda Raff aele Mendez at (813) 974-1255. If you have questions about your rights as a person who is taking part in a research study, you may contact the Division of Research Compliance of the University of South Florida at (813) 974-5638. Consent to Take Part in This Research Study By signing this form I agree that: I have fully read or have had read and e xplained to me this informed consent form describing this research project. I have had the opportunity to question one of the persons in charge of this research and have received satisfactory answers. I understand that I am being asked to pa rticipate in research. I understand the risks and benefits, and I freely give my consent to participate in the research project outlined in this form, unde r the conditions indicated in it. I have been given a signed copy of this informed consent form, which is mine to keep. ____________________ ______________________ _______ Signature of Participant Printed Name of Participant Date Investigator Statement: I certify that participants have been provided with an informed consent form that has been approved by the University of South Fl oridas Institutional Re view Board and that explains the nature, demands, risk s, and benefits involved in pa rticipating in this study. I further certify that a phone number has b een provided in the event of additional questions. ____________________ ______________________ _______ Signature of Participant Printed Name of Investigator Date
204 Appendix E Bracketing Interview In order to acknowledge personal biases that may impact this researchers objective investigation of the phenomenon in question, a bracketing interview was conducted. For the purpose of this interview, th is researcher chose to refer to himself in the following section as I, as a mean s of facilitating communication of personal experience. I am a 30 year-old Caucasian male livi ng in Tampa, Florida. I have never married, nor do I have any children. I was born in Providence, Rhode Island, where I lived until age three. At that point, my fa mily moved to Swansea, Massachusetts, where my family continues to reside My immediate family is comp rised of my parents and two younger sisters. Although I saw them only a few times each year, my maternal grandparents, maternal aunt and family, and pa ternal aunt and family all lived within few hours in New Hampshire. I am a family-oriented person and have close relationships with members of my family, in light of the fact that my parents divorced in the early 1990s. I lived in Swansea until I graduated high school out of a class of 188 people. Swansea is a town of approximately 25,000 residents comprised mostly of Caucasian, middle to lower middle class families. Though geographically close to cultural centers such as Providence, Newport, Boston, and New York City, Swansea has been historically quite homogeneous. Most of the towns familie s were of Portuguese or Irish descent, and when I graduated in 1991, there was only one Af rican American family who lived in my
205 Appendix E (Continued) town. As a result, I had largely been isolated in life, receivin g little opportunity to engage and learn from diverse cultures and ethnic groups. While I was raised in an environment of acceptance and sharing, I was eager to learn more about individuals whose culture and ethnic backgroun d were different from my own. Education has always been a priority in my family. My mother is a special education teacher in the public schools and my father is a professor of journalism. Both hard work and academic achievement were held in highest of esteem by my parents, and early on in life, I knew that I wanted to go to college. This influence had a positive impact upon everyone in my family, and not surprisingly, my sister s and I have all gone to college and chosen similar professions as our parents: I am a school psychologist, my middle sister is an elementary school teacher, and my youngest sister is studying to become a nurse. After graduating with a Bachelors De gree in Psychology at the University of Connecticut, I moved back home to Massachuset ts, where I worked for three years at the Brown University Medical School as a supervisor of an in tensive behavioral treatment program for young children with autism. In this capacity, I enjoyed collaborating with a variety of professionals and families as I worked to provide comprehensive behavioral and educational support to children with ch ronic medical conditions and developmental disabilities. Though I thoroughly enjoyed working at Brown, I knew I wanted to go on to graduate school. I had a goal to become a ch ild psychologist and I was determined to see it through.
206 Appendix E (Continued) I am now in the process of earning a doc toral degree in school psychology at the University of South Florida. I have lived in Tampa, Florida since my initial enrollment in graduate school in 1998. In my second semest er at the University of South Florida, I began working as an applied researcher/behav ioral consultant at the Louis de la Parte Florida Mental Health Institute (FMHI). I worked at FMHI for the next three years, obtaining training and experience working with families of children with autism and other developmental disabilities. At FMHI, I was fortunate to receive traini ng and mentorship from the staff of the Division of Applied Research and Educatio nal Support (DARES), including Drs. Glen Dunlap, Lise Fox, Pamelazita Buschbacher, Bobbi Vaughn, Donald Kincaid, and Heather George. While at DARES, I was taught how to provide services and supports to children and families using positive behavior support (PBS). Positive behavior support is an evidence-based model of problem solving design ed to enhance the capacities and skills of individuals and their families (Koegel, Koegel, & Dunlap, 1996). Based on both empirical research and humanistic values PBS offers a method for identifying the environmental events, circumstances, and th e interactions that trigger or predict challenging behavior, the purpos e of challenging behavior and the development of support strategies for preventing challenging behavior and teaching new skills (Koegel, Koegel, & Dunlap, 1996). As I learned about PBS, I came to appreci ate and understand the need to provide services and supports that not only teach new skills, but actually lead to meaningful
207 Appendix E (Continued) changes in the child, family, or caregivers quality of life. I was taught that research should be a collaborative process with pare nts and caregivers, w ith a shared vision driving the team process that reflects the valu es, beliefs, and goals of the childs family. The notion of collaboration was held in such high regard in DARES that both parents and teachers had been routinely asked to serve as authors on published rese arch studies or to present at local, state, national, or internat ional conferences. My colleagues at FMHI heavily reinforced the idea that parents and teachers are truly colleagues and equal partners in the process. This is a value that I practiced as I conducted my thesis research, which entailed developing, implementing, and evaluating the degree to which a comprehensive PBS intervention plan for a middle-school aged girl with multiple disabilities had positively impacted her qual ity of life in the school setting. Not only were we successful as a team of parents and professionals, but the teacher served as an author in the studys publication and a follo w-up study was conducted in partnership with the school and family. In addition to learning how to facil itate, implement, and evaluate PBS intervention plans for both i ndividuals and entire schools, I had developed a growing interest in working with pres chool-aged children, particularly those with chronic medical conditions. Under the supervision of Dr. Kathleen Armstrong, I received training in preschool assessment and intervention, comp leting both an advanced practicum within the Division of Child Development and Neurology of the USF Department of Pediatrics, and a year-long assistantship se rving as a behavioral consu ltant to a local community
208 Appendix E (Continued) preschool. At this time, I became familiar w ith the Early Intervention Program (EIP) and the larger service system for young children that was emerging within Hillsborough County, Florida. I soon developed a passion for working with young children and their families, learning first-hand that services and supports provided at an early age could result in significant and meaningful change s. I found that if identified properly and provided in a timely and consistent manner, th e opportunity existed to affect long-lasting changeto literally rewire a childs brain and to provide much needed support to their families. Since that realization, I completed a doctoral intern ship working in both the School District of Hillsborough County and at FM HI. In the former role, I served as a school psychology intern for a local elementary school, while in the latter, I served as a consultant facilitating the implementation of school-wide positive behavior support in the same school. Shortly thereafter, I returned to the EIP, assuming a position as a developmental specialist in the Division of Child Development and Neurology of the USF Department of Pediatrics, where I c ontinued to obtain experience providing assessment and intervention for young children and their families. In this capacity, I obtained first-hand experience in worki ng with young children with challenging behavior. Though I have always been to some de gree disadvantaged providing support to parents since I am not a parent myself, nowhere had this gap been more apparent than at the EIP. Yes, I did have the advantage of being a big brother who played a big part in
209 Appendix E (Continued) raising a sister 12 years my junior. Li kewise, I understand what families go through when a divorce occurs, since my own parent s divorced when I was a senior in high school. However, I still did not know what it is like to be a parent, let alone a parent of a young child with challenging behavior. I real ized that I lacked the perspective of a parent. It was at this point in my career that I truly came to realize how much of my own professional development came directly from interacting with parents. Attuned more than ever to their own experiences, successes, and stressors, I found that by listening to them, I was able to learn as much, if not mo re, than what I could learn from observation. Consequently, I found myself becoming more ef fective, enhancing my collaboration with families, better understanding a childs needs, and identifying additional services and supports that could help children and their fa milies. Interestingly, I found that as I saw more and more children and families, that there seemed to be a difference between the needs of children who were initially eligible for Part C services prior to 12 months and after 30 months of age. While both groups of children presented with challenging behavior, it appeared to me that the quality of the overall experience shared by families appeared different relative to the information they received from their pediatrician, their experiences learning about their childs condition, the process by which they found and received supports, and the familys overal l level of satisfaction in obtaining quality services for their children.
210 Appendix E (Continued) Perhaps equally important as this rea lization was the discovery that parents reported dissatisfaction with the existing system of care in Hillsborough County. Parents frequently lamented about having difficulties finding service provide rs, quality childcare settings, or community support groups. Others reported that they did not know where to go for help, and expressed regret over bringing their child in at an older age. Given the recent interest within the county to dramatically enhance the quality of services and supports for young children (including those with challenging behavior), I became interested in learning more about parent experiences, wondering if not only had their voices been heard, but whether or not their experiences had been considered in the development and improvement of the local sy stem of care. As I move closer to beginning this research study, I anticipate that the parents I interview will share several different themes, and based on my own experience and interactions wi th other parents in similar circumstances, I would expect th at the following themes will emerge: Pregnancy and labor Neonatal course (including NICU) Identifying concerns Diagnosis Acquiring useful and accurate medical information from pediatrician Entering and navigating the system of care Stresses associated with coordination of care Parents job experiences
211 Appendix E (Continued) Part C eligibility evaluation Part C services and supports Respite care services, ob taining support for self Financial stressors associated with childs disability Daycare or preschool experiences Family members Access to the community, transportation Friends of family Access to church/religious services Impact on neighbors I certainly cannot predict which themes will em erge or whether or not these themes even accurately represent the concerns and experien ces of the families I interview. However, what is of unquestionable value is that I will later be able to reflect upon these predispositions at the end of th is study and evaluate the degree to which they matched the actual themes that emerged. In summary, I am a firm believer that all children can learn, particularly when parents provide modeling and nonaversive suppo rt. More specifically to young children, I have observed the potential change that ca n occur when comprehensive services and supports are provided at an early age in coll aboration with their families. However, I have also come to develop a greater appreciation for the ma ny stressors and difficulties inherent to parenting children, particularly t hose with challenging behavior. Though I am
212 Appendix E (Continued) not a parent, I can see how it is easier said th an done. As a professional, I feel as though it is time for me to be the studentto learn what families have to say, so that I may share their stories and perhaps inform those within our community of how we might be able to change the system of care to be tter achieve its purpose.
Appendix F Theme Verification Protocol After initial contact and the interview is conducted, the researcher will transcribe data and look for common themes within groups. Following this step, the researcher will follow the theme verification protocol stated below: 1. Make telephone contact with the participant and set up a meeting for 45 minutes (15 minutes for rapport and purpose, 30 minutes for theme verification). 2. The researcher will introduce up to five selected segments of the participants interview transcript and ask the following questions for each segment: a. When I asked about (question), you mentioned (read transcript). Does this sound like what you meant to say? b. Is there a way that I should modify the statement to reflect a more accurate portrayal of your experiences? c. Are you pleased with/do you agree with this segment? 3. After each segment has been reviewed, the researcher will ask participants if there are any other questions, or if there is anything they forgot to mention during the initial interview. 4. Finally, the researcher will ask the family if he can contact them in the future if he has any questions, provide the $50 stipend, and thank them for their time. 213
Appendix G Participant Demographic Information Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 39 18 36 F African American Speech delay, develop-mental delay, asthma, otitis media, eczema Self-injury, non-compliant, tantrums, excessive crying Speech therapy evaluation; EELP evaluation; speech therapy 3x/wk 30 min Relation to Child Highest Education (Years) Occupation Zip Code 1 Bri Mother 14 Admin. Assistant 33647 214
Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 35 Birth 11 F Caucasian Williams Syndrome Feeding concerns, self-injury, property destruction, biting, tantrums, screaming, sensory Occupational therapy 2x 30 min; physical therapy 2x 30 min; speech therapy 2x 30 min; early intervention 1x 60 min; pharmaco-therapy, Relation to Child Highest Education (Years) Occupation Zip Code 2 Grace Mother 12 Admin. Assistant 33611 215
Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 39 10 39 M African American Eczema, speech delay Hitting, non-compliant, property destruction, tantrums, screaming, excessive crying, stuttering, withdrawn, sleep deprivation Pharmaco-therapy, EELP Waitlist Relation to Child Highest Education (Years) Occupation Zip Code 3 Darnell Mother 15 Home Maker 33647 216
Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 33 9 14, 26 M African American Ventricular septal defects x2, gastroesophageal reflux Hitting, self-injury, non-compliant, property destruction, tantrums, screaming, scratching, throwing objects, dropping EIPBS waitlist Relation to Child Highest Education (Years) Occupation Zip Code 4 DJ Maternal Grand-mother 13 Disabled 33614 217
Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 38 6 36 M Caucasian Pervasive develop-mental disorder (not otherwise specified), otitis media Hitting, feeding concerns, self-injury, non-compliant, property destruction, biting, tantrums, screaming, scratching, excessive crying, throwing objects None; history of occupational therapy, speech therapy; history of IEP (autism spectrum disorder placement) pharmaco-therapy, Relation to Child Highest Education (Years) Occupation Zip Code 5 Andrew Mother 14 Home Maker 33569 218
Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 25 15 20 M Caucasian Develop-mental language disorder, otitis media, delayed milestones, behavior concerns Hitting, self-injury, non-compliant, biting, tantrums, screaming, throwing objects Speech therapy 2x 30 min, early intervention (behavior) 2x 30 min Relation to Child Highest Education (Years) Occupation Zip Code 6 Lenny Mother & Father 18, 16 Accountant, Professional Speaker 33556 219
220 Appendix G (Continued) Number Age at Interview (Months) First Concerned (Months) Age at Eligibility (Months) Gender Race / Ethnicity Medical Concerns Challenging Behaviors Services 43 36 36 M African American Speech delay, asthma, bronchitis Hitting, selfinjury, noncompliant, tantrums, screaming, excessive crying, throwing objects, jumping off high platforms Speech therapy evaluation pending; EIPBS parent group; pharmacotherapy, Relation to Child Highest Education (Years) Occupation Zip Code 7 Tank Mother 13 Home Maker/Child Development Associate 33612
221 Appendix H Assumptions and Categories for Research Question One 1A. Parents of young children with challenging behavior reported that they did not always receive accurate and useful information from their pediatrician about their childs behavior. 1B. Parents of young children with challenging behavior reported that they experienced diffic ulties obtaining accurate medical/developmental diagnose s from their pediatrician. 1. Parents of young children with challenging behavior will report difficulties obtaining accurate and useful information regarding their childs challenging behavior 1C. Parents of young children with challenging behavior reported that they learned more about their childs challenging behavior from the Internet than from a medical professional. 2. Parents of young children with challenging behavior will report difficulties obtaining services and supports designed to reduce their childs rate of challenging behavior 2A. Parents of young children with challenging behavior reported difficulties obtaining services and supports designed to reduce their childs rate of challenging behavior (e.g., identifying community providers, setting up appointment s, receiving quality services, avoiding delays without services). 3A. Parents of young children with challenging behavior reported that their childs challenging behavior has created financial stress relative to financial expenses related to their childs challenging behavior (e.g., cost of medications, health insurance, gas, daycare, healthy foods). 3. Parents of young children with challenging behavior will report that their childs challenging behavior created financial stress 3B. Parents of young children with challenging behavior reported that their childs challenging behavior has created financial stress associated with their career. 4. Parents of young children with challenging behavior will report experiencing stress among members of their family 4A. Parents of young children with challenging behavior reported experiencing stress among members of their immediate and extended families 5A. Parents of young children with challenging behavior reported experiencing a degree of isolation from friends as a result of their childs challenging behavior 5. Parents of young children with challenging behavior will report that they experience community isolation as a result of their childs challenging behavior (i.e., decreased frequency and/or duration of interactions with friends, neighbors, community resources, religious services, and/or public transportation) 5B. Parents of young children with challenging behavior experienced a degree of community isolation relative to both recreational activities and support services 6. Parents of young children with challenging behavior will report difficulties obtaining accurate and useful information regarding their childs challenging behavior 6A. Parents of young children with challenging behavior reported that they did not always receive accurate and useful information from their pediatrician about their childs behavior.
About the Author Jonathan Worcester received a Bachelors Degree in Liberal Arts and Sciences (Psychology) at the Universi ty of Connecticut in 1995. He enrolled in the School Psychology Doctoral Program at the University of South Florida in 1998, and prior to earning the Doctoral Degree, earned both a Master of Arts Degree (Curriculum and Instruction) in 1999, and an Educational Speci alist Degree (Curriculu m and Instruction) in 2003. Jonathan is dual-certified as both a Nati onally Certified School Psychologist and as a Board Certified Behavior Analyst. He has extensive ex perience supporting preschooland elementary-aged children and families with severe disabilities and has conducted research in the areas of positive be havior support, applied behavior analysis, early intervention, and family voice. Jonathan s current research in terests include early intervention, positive behavior support, ch ild development, and pediatric school psychology. Jonathan is the author/co-author of several peer-reviewed articles and has presented/facilitated training ranging from the local to international level.