Diane Leamy dissertation

Institute for Clinical Social Work

THE LIVED EXPERIENCE OF YOUNG ADOLESCENTS WITH LEARNING DISABILITIES

A Dissertation Submitted to the Faculty of the Institute for Clinical Social Work in Partial Fulfillment For the Degree of Doctor of Philosophy

By DIANE LEAMY

Chicago, Illinois June, 2008

ABSTRACT

This is a qualitative phenomenological study that captures the lived experience of a sample of 12 young adolescents who have learning disabilities. Semi-structured interviews yielded self-narratives to describe their experience. Students developed a sense of self as either “different/normal” or “different/not normal” due to the provision or lack of the adjunctive function in the form of effective help. Effective help provided students with strategies for successful performance. The students with a “different/ normal” narrative developed a sense of self organized around the theme of competence with implications for resiliency. The students with a “different/not normal” narrative developed a fragile sense of self organized around strategies for self-protection that were self defeating and impeded to varying degrees the ability to meet selfobject needs.

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ACKNOWLEDGMENTS

I would like to recognize the steadfast support of my husband, Frank, the inspiration of my children, Ben, Sarah, Beth, Zach, and my sister, Jeanette, the prompt editing of my mother, Anne, and encouragement of my father, Richard, in the completion of my work.

I am very grateful to Michelle Sweet, Ph.D., Joe Palombo, M.A., and Amy Eldridge, Ph.D., for their enthusiastic guidance throughout the dissertation process. I also wish to thank my readers, Peter Shaft, LCSW, and Nan Knight-Birnbaum, LCSW, for their attention and helpful suggestions.

Finally, I hope I have honored the generosity and bravery of the students who spoke so genuinely and thoughtfully of their experience of a learning disability.

DL

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TABLE OF CONTENTS

Page ABSTRACT............................................................................................................ ii ACKNOWLEDGMENTS ..................................................................................... iii LIST OF TABLES ................................................................................................ vii Chapter I. INTRODUCTION ............................................................................................... 1 History of the Problem Formulation of the Problem II. LITERATURE REVIEW................................................................................... 8 Introduction Theoretical and Conceptual Framework Relevant Knowledge and Focus of Past Research Self-concept and Learning Disabilities Definitions of a Specific Learning Disability The Process of Identifying a Learning Disability in Schools Reactions to the Process Selfobject Functions, Trauma and Narcissistic Injury Self Psychology and the Self-narrative Self Psychology and Early Adolescence

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TABLE OF CONTENTS – Continued

Chapter

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III. METHODOLOGY ......................................................................................... 31 Aims of Study Definition of Major Concepts Statement of Assumptions Research Design and Strategy Sample: The Study Participants Data Collection Chapter Student Consent and Confidentiality Data Analysis Limitations IV. FINDINGS...................................................................................................... 48 Organization of Findings The Question of Difference Advice “Different/Normal” The Way to Normal No Big Deal Rescued from “Different/Not Normal” A Structural View of “Different/Normal” “Different/Not Normal” “I’m Human Aren’t I?” A Defective Brain No Excuses What’s Happening Here?

Can Help Come Too Late?

A Structural View of “Different/Not Normal” Gender Differences Summary

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TABLE OF CONTENTS – Continued

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V. THEORETICAL DISCUSSION...................................................................... 87 Introduction Self Psychology and Development Self Psychology and the “Different/Normal” Narrative Effective Helping and Selfobject Functions Normal as a Function of Twinship A Self that is Whole Self Psychology and the “Different/Not Normal” Narrative The Lack of Help and Selfobject Functions Ineffective Help The Loss of Normal, Failure of Twinship, and Search for Safety Trauma The Loss of Self-Cohesion Conclusions VI. IMPLICATIONS FOR SOCIAL WORK ..................................................... 105 Overview Clinical Implications Policy Implications Research Implications Appendixes A. COVER LETTER TO PARTICIPANTS ........................................................115 B. PARENT AND STUDENT INFORMED CONSENT ...................................117 C. SEMI-STRUCTURED INTERVIEW.............................................................129 D. DESCRIPTIVE DATA COLLECTION FORM.............................................131 REFERENCES ................................................................................................... 133

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LIST OF TABLES

Table

Page 1. Participant Data ......................................................................................37

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1

CHAPTER I

INTRODUCTION

History of the Problem This is a study that asks, “How do young adolescents interpret their experience of having a learning disability?” This question is complicated by the many definitions of learning disability. The term learning disability is defined differently by advocacy groups, legislative assemblies, and neuropsychologists. For advocacy groups, a learning disability is defined as “a neurological condition that interferes with a person’s ability to store, process, or produce information” (Learning Disabilities Association of America [LDA], 2006). Another definition is that of the Interagency Committee on Learning Disabilities (1987), which states: Learning disabilities is a general term that refers to a heterogeneous group of disorders manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning, or mathematical abilities. These disorders are intrinsic to the individual, presumed to be due to central nervous system dysfunction, and may occur across the life span. Problems in selfregulatory behaviors, social perception, and social interaction may exist with learning disabilities but do not by themselves constitute a learning disability. (p. 1) Neuropsychologists refer to the neurological functions that underlie any specific deficit in the above mentioned skills. Whereas schools and advocacy groups tend to focus on problems of academic output and easily measurable differences in academic

2 performance, neuropsychologists measure neurological functions that are required by each skill set. Pennington (1991) suggests a differentiation between learning disabilities as identified by the school and political system and neuropsychologically based learning disorders. He sees learning disabilities as a subset of learning disorders.

By definition, a learning disorder involves dysfunction in one or more neuropsychological systems that affect school performance . . . . I also include autism spectrum disorder and acquired learning disorders, which are not included in the category of learning disabilities . . . .The traditional category of learning disabilities is unduly restrictive given the nature of the clinical problem. (p. xii) Legislative action has defined specific learning disabilities via federal law PL 94142 for the purpose of identifying who receives special education services. It gives the following definition, “a psychological processing deficit accompanied by a severe discrepancy between intellectual ability and academic achievement” (Warner, Dede, Garvan, & Conway, 2002, p. 501). Federal law PL 94-142 results in a system of checks and balances carried out via school teams who control access to resources termed “special education.” This system was created to ensure free and appropriate education for all students and prevents discrimination of those with learning disabilities. The federal government specifically defines these disabilities. Exclusionary criteria eliminate learning issues that are due to cultural or economic disadvantages. This system requires the interface of several different paradigms: governmental regulations, educational institutions, neuropsychological clinicians, child development specialists, and families advocating for their children. Members from each of these paradigms bring a particular set of values, beliefs, and specialized language. At the multidisciplinary conference, parents may have the disturbing experience of witnessing the clash of these various

3 meanings and beliefs while discussing the educational needs of their child. Parent and child find themselves at the epicenter of the disruption.

Determination of eligibility due to a learning disability is not a simple process. A multidisciplinary conference determines if a case study should be performed. Parents, teachers, the school psychologist, social worker, school nurse, and school administrator attend the multidisciplinary conference and are referred to as the “team.” Other professionals may be requested to attend if so desired. Parents have the right to bring an advocate or other family member. If the multidisciplinary conference is in agreement, a case study is requested to determine if a child is eligible for special education services via any of a number of qualifying categories, one of which is a specific learning disability.

The school has 60 school days to complete the observations, testing, and interviews required for the case study. Another multidisciplinary conference is scheduled with a required 10-day, written notice, given to the parents. At this multidisciplinary conference, results of the testing, observations, and interviews are presented with the intent of using the information to answer the question, “Does the student have evidence of a learning disability or other disability that would qualify him or her for special education services?” If the answer to the question is yes, the team then designs an Individual Education Plan (IEP) outlining goals and services. Parents have the right to disagree and appeal the process if they so desire. This initiates another set of legal meetings and procedures.

The legal definition for a specific learning disability that mandates school action leaves much room for interpretation. As stated by Public Law 94-142 and Section 504 of

4 the Individuals with Disabilities Act, a specific learning disability is defined as “a psychological processing deficit accompanied by a severe discrepancy between intellectual ability and academic achievement” (Warner et al., 2002, p. 501). The idea of severe discrepancy is interpreted differently from state to state and from school district to school district. Illinois is one of the states that use a cutoff criteria for intelligence so that students below a certain intelligence level are not eligible for the specific learning disability label. Most states also use the discrepancy criteria, creating the additional problem of operationally defining “severe discrepancy.” Some states use a regression formula, some use a criterion of one to two standard deviations below average, and some states simply use the criterion of grade level deviations (Warner et al., 2002). Thus, a student could have the experience of qualifying as having a learning disability in one state or district and not qualifying in another. Social workers have been witness to a child’s being found ineligible in grades 2 and 3, but then being found eligible by grade 4 or 5 when the discrepancy becomes severe enough.

The severe discrepancy criterion implies that a student must reach a degree of failure or fall far enough behind same grade peers before he or she can be eligible. This approach is diametrically opposed to early childhood policies that stress the importance of early intervention. Pickering (2002), a specialist in learning disabilities, has extensively documented the signals of learning disabilities at various developmental stages. Parents have the confusing experience of receiving services aimed at early intervention while a child is in preschool, then experiencing a change in responsiveness once a child enters a typical public school. Primary teachers often note the presence of

5 such indicators as spotty performance on IQ tests, below mental age on tests of drawing a person, poor performance on visual motor gestalt tests, poor performance on group tests, impaired right-left discrimination, poor spatial orientation, and many others. In spite of these indicators, primary teachers can be frustrated by the legal requirement for a severe discrepancy in their desire to obtain special education services for a child.

Because of such differing views on specific learning disabilities, members of the multidisciplinary conference, including the professionals and the parents, often express conflicting philosophies and values. Some believe that any form of identification that labels a child as “different� in a school setting is detrimental to a child’s well-being. This results in attempts by parents or staff to delay an eligibility finding. Others may believe that the earlier the intervention, the better, resulting in strong advocacy for rapid school action in regard to determining eligibility. This approach flies in the face of the political and legal perspective, which designed the identification process to act as a gateway to special education services for those who meet the criteria, in addition to eliminating access for students who show evidence of economic disadvantage or cultural differences.

This was an attempt to avoid previous overidentification of minorities and the underprivileged. The assumption was that being identified for special education services was stigmatizing. As a result, timelines, particular sequences of meetings, paperwork, and exclusionary criteria are specified by the legal system to provide a sedate and thoughtful determination of eligibility for a specific learning disability.

Reactions of parents and children undergoing this process can vary widely from business-like aplomb, to uncontrolled weeping, to rage, to complete denial. At times

6 clinicians have the experience of feeling like perpetrators of a great injury. At other times clinicians struggle as advocates for the child and the family in attempting to use legal criteria to provoke a plodding institution to action. The multidisciplinary conference provides the parents with a morass of clinical and educational findings, which must then be used to fit a child into at least one of several legally defined categories. Imagine the challenge to families as they attempt to process all of the data about their child and then to make decisions about the child’s educational future. In addition, someone must explain to the child the very real consequences that will occur in school as a result of this meeting. This last step is the least prescribed in terms of who, what, when, where, and how these consequences will happen.

Formulation of the Problem This study explores the self-narratives of young adolescents to determine how they understand their learning disability. The conflict between a neuropsychological perspective, which focuses on underlying neuropsychological processes, and that of the sociopolitical perspective, which is focused on school performance, provides students and parents with an additional challenge to understanding the concept of a learning disability.

Parents, child, and school become caught in a triangular interaction that attempts to define expectations and may create an inconsistent set of external responses.

I had wondered how the struggle of parents and professionals to integrate the differing perceptions of learning disabilities would impact the child. In particular, how does the process of becoming identified as having a learning disability affect the

7 development of self-narrative for a child? How is the relationship between parent and child impacted? Do the attitudes of professionals and parents toward special education services impact the child in his response to the process? How do practices used in schools during this process support or not support a healthy self-concept? Does the length of time from the start of school to the finding of eligibility impact the child? Does the child use information revealed as a result of the eligibility evaluation? Does this process impact a student’s future goals and ambitions? What might students tell us about the process?

What are the intended and unintended consequences they experience? Do these consequences impact their interpretation of new experiences?

The participants of this study live at the intersection of differing paradigms, and they describe the tensions generated as a result of their interactions with parents, teachers, and peers. Their stories provide a unique perspective on the experience of a learning disability.

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CHAPTER II

LITERATURE REVIEW

Introduction Because the conceptual and theoretical framework of hermeneutic phenomenology and self psychology directs the focus of this study, it will be presented first. Next is the a review of relevant empirical and theoretical literature on a self psychological view of child development, with a focus on early adolescence, learning disabilities, reactions of the family to their child’s learning disability, and a self psychological understanding of narcissistic injury and trauma.

Theoretical and Conceptual Framework The unique tension created by the convergence of differing paradigms in the life of a child with a specific learning disability raises the question of how the child is impacted. The child must cope with a particular neurological deficit, the social meaning of this deficit, and his/her subjective meanings.

Phenomenology is both a philosophy and a method of qualitative research (Creswell, 2003). The phenomenological approach gives voice to the student with a specific learning disability and also mines the personal meanings of students against the

9 backdrop of social constructions. “Phenomenology describes how one orients to lived experience, hermeneutics describes how one ‘interprets’ the texts of life” (Van Manen, 1990, p. 4). The goal of hermeneutic phenomenology is to capture the essence of an experience, in “an attempt to uncover and describe the structures, internal meanings of lived experience” (Van Manen, p. 10). For the purposes of this study, the self-narrative of the student provides access to the student’s reflections about experience. In the tradition of Husserl (1970), the relationship between perception and object is seen as an active process. Human beings actively configure their experiences. The hermeneutic phenomenological inquiry is intersubjective because the researcher needs the other to develop a dialogic relation to the phenomenon. In the particular form of hermeneutic phenomenology research described by Van Manen, the method acts to edify “personal insight contributing to one’s thoughtfulness and one’s ability to act toward others, with tact or tactfulness” (Van Manen, p. 7). Thus, the purpose of this strategy is grounded in a desire to develop a sensitivity or thoughtfulness described as “caring attunement” that results in action that reflects this understanding. Van Manen’s particular phenomenological strategy is directed by a purposeful intent to inform the actions of those who work with children. It is a fitting method for a researcher who seeks greater understanding of the experience of students diagnosed with a specific learning disability for the purpose of informing parents, educators, and clinicians.

“We are self interpreting beings and language constitutes this being” (Gubrium & Holstein, 2000, p. 488). The experience of being in the world results in an interpretive act as we attempt to make sense of our individual and shared experiences. One way for the

10 researcher to gain access to this process and to also give voice to those not well represented is to discover another’s self-narrative. In working with children, Palombo (2001) defines self-narrative as “the broad set of communications through which children tell us about themselves that reflect the organization of their experiences” (p. 43).

Examination of the self-narrative enables the researcher to recognize the unique construction of models and concepts by an individual in their specific context as they experience the world. The individual accomplishes this against a backdrop of shared meanings. It is the integration of “personal and shared meanings” (Palombo, 2001, p. 52), as part of the self-narrative created by the young adolescent that provides the data for this study. A child’s entry into school is often the first opportunity to begin to discover meanings and concepts held in the greater cultural view. Child, family, and society collide in the intersection of shared and individual values, beliefs, and interpretations of the world.

The theoretical foundation of self psychology provides an interpretive stance for this study specifically in the concept of empathy and the concept of “self.” Empathy has two roles in this study, as it does in self psychology. First, it is a way of observing attuned to the inner life of another. Secondly, its presence is experienced as positive or beneficial in many different settings (Kohut, 1982).

The self is an elusive concept, understood through its manifestations, but is essentially “a metaphor for introspected experience” (Wolf, 1988, p. 27). The “self” is unknowable, but we can collect data about “the way in which a set of introspectively or

11 empathically perceived inner experiences to which we later refer to as ‘I’ is gradually established” (Kohut, 1977, p. 310).

Key to the understanding of self psychology is the principle that “selfs come into being and stay whole in consequence of a person’s having sustaining selfobject experiences” (Wolf, 1988, p. 14). In normal development the adequate provision of selfobject functions results in “transmuting internalization” (Palombo, 2004, p. 75), which allows the child to eventually perform these functions for themselves. Adequate mirroring results in the child’s feeling worthwhile and capable, leading to the formation of ambitions. Adequate idealizing functions provide the child with the experience of protection and security. The child shares in the strength of the adult, while being modulated in affect and action by the adult. This leads to the child’s internal development of self-control and self-discipline and provides the foundation for the formation of ideals and values. Finally, the adequate provision of twinship experiences results in the child’s feeling “like” others, being part of a family, belonging to a peer group, belonging to a community, and ultimately being a member of the human race.

Palombo differentiates two terms, the “sense of self” and the “self-narrative.” A sense of self refers to “a set of phase specific experiences that reflect the intersection of the child’s endowment and his responses to the community’s expectations” (2001, p. 25).

As such, the child’s sense of self is experiential and dynamic and includes periods of instability as the child responds to the environment. Paralleling the sense of self is the development of a self-narrative. The self-narrative is reflective as opposed to experiential. The self-narrative “provides a view of the child’s integration of the

12 meanings of those experiences� (2001, p. 4). The child is challenged to make sense of experiences and expectations in the school environment that can be in direct contrast to familial experiences. In creating a self-narrative a child ascribes meaning to his or her experiences filtered through the environment and relationships with significant others.

The challenge for the child is to integrate this information into the developing sense of self.

Relevant Knowledge and Focus of Past Research The discussion of past research and theoretical knowledge includes material that crosses several disciplines. Past research specific to learning disabilities is a broad subject and for purposes of this study is reported in terms of its impact on self concept, definitions of learning disabilities from the perspective of different paradigms, legal processes in public schools regarding learning disabilities, and reactions to these processes. This is followed by a self psychological view of trauma, development of the self-narrative, and early adolescence.

Self-concept and Learning Disabilities A variety of studies assess the self-concept of the child with a learning disability versus the nonlearning disability child (Bear, Minke, & Manning, 2002; Cosden, Elliott, Noble, & Kelemen, 1999; Tabassam & Grainger, 2002). The term was used loosely and actually referred to the following: academic self-concept, global self-concept, selfesteem, self-perception, self-understanding, and attributional style. Academic self-

13 concept referred to a general cognitive understanding of abilities (Cosden et al.). Selfesteem is viewed as an evaluative judgment that includes overall self-worth. The term global self-concept referred to an evaluation of self across several domains and includes measurements of happiness, satisfaction, and overall affect about oneself (Bear et al.).

Self-understanding and self-perception were used to indicate how students understood the concept of a learning disability with its specific characteristics. Attributional style refers to the way that a student “explains the causes of good or bad events involving themselves” (Tabassam & Grainger). Those with a positive attributional style believe that their ability and effort, which is consistent over time, will impact events in all areas of life.

Results of these studies are conflicting and have some systemic errors. The term specific learning disability covers students with a wide range of characteristics. Students defined as having a specific learning disability in a given locale may not qualify as having a specific learning disability in another locale due to differing definitions of “significant discrepancy.” Secondly, many instruments used to rate perceptions of self were project-developed scales and were normed with very small, nonrepresentative samples (Bear et al, 2002).The older Piers-Harris scale continues to be used in spite of being normed only in Pennsylvania and having inconsistencies with “modern day theories of self concept” (Bear et al., p. 406). This is partly due to the fact that it is a brief scale more quickly completed by participants than recent longer scales with greater validity. As a consequence of the meta-analysis by Bear et al., a result of lowered global self-esteem for students with a learning disability no longer appears valid. In fact, it

14 appears that the global self-concept of students with a learning disability is similar to that of nonlearning disability students except in the area of academic self-perception. In some studies where families of learning disabled students report effective school programming, even that difference does not appear consistently. Bear et al. urge researchers to abandon the task of comparing group analysis of self-concepts of students without a learning disability and with a learning disability. They believe that research efforts would be better directed toward analysis of the specific mechanisms that support or inhibit the development of positive global self concepts.

A study by Dyson (1996) included feedback from families regarding their experience with a child diagnosed with a learning disability. The student with a learning disability was not included in the study. Scales were used to evaluate sibling self-concept, family environment, resources, and stress. The study also asked the following open-ended questions: “Has a learning disability caused any problems in terms of family, siblings, and school? What has been your experience with regard to family, siblings, and school that is related to your child’s learning disability?”(Dyson, p. 282). The result of this small sample size study (38 siblings and parents, based on 19 children with a learning disability) was that families reported significant stress in relation to their child’s skill and behavior deficits and especially unsatisfactory school experiences. A frequently identified problem was the delay in identification of the child with a learning disability by the school. I was unable to locate any studies that explored the issue of identification with a learning disability for the student and the specific mechanisms that positively or negatively impacted a student’s global self-esteem.

15 One study looked at the correspondence among parent, teacher, and student perceptions of learning disabilities. The operational definition of perception of a learning disability involved rating expected academic performance in a series of subjects and skill sets (Stone, 1997). The study confirmed previous findings of students rating themselves higher than their parents but described an identical profile of strengths and deficits.

A similar study evaluated self-perception of a learning disability by using an instrument that assessed students’ rating of the disability. Ratings indicated the degree to which the disability was seen as: circumscribed, modifiable, and nonstigmatizing versus global, unchanging, and stigmatizing (Rothman & Cosden, 1995). The authors found a positive relationship between a less negative self-perception of the learning disability and perceived competence, parental support, and self-concept. This study investigated students’ nonacademic understanding of their learning disability.

Finally, one study investigated the influence of affect on achievement and behavior of students with specific learning disabilities. For these students an individual induction of positive affect resulted in improved performance (Yasutake & Bryan, 1995).

The authors wondered about negative experiences in school and the generation of negative affect states. The authors concluded that poor performance in students with specific learning disabilities may be due to an accumulation of negative affect as a result of unpleasant school experiences.

These studies explored the experience of a specific learning disability via scales and brief questionnaires. Researchers searched for correlations, or causal relationships, that would provide a clear proof of harm or benefit in terms of having a learning

16 disability. The discrepancies and conflicting results seem the result of measurements of aspects of a student’s experience without understanding the experience as a whole.

Definitions of a Specific Learning Disability The political/legal definition of learning disabilities is not in synchrony with the understanding of specific learning disabilities developed by the advancing knowledge of brain function, especially in the area of learning. A major source of frustration and conflict for parents and school teams lies in the definition of learning disabilities by two different systems, one the legal/educational system used by public schools, and the other the science of neuropsychology used by clinicians. A third rarely discussed system, which also impacts parent and child, is the societal understanding of a learning disability.

The term neuropsychological deficit or difference is value laden. It denotes a particular variation in processing, storing, or retrieving information that negatively impacts school performance (LDA, 2006). This does not reveal the underlying greater valuation of particular types of neurological skills over others by a school system and the larger culture. At one end of the continuum is a cultural and social perspective is represented by the physician and writer, Levine (2002): What may be called a disability in childhood actually could contribute to the subspecialization of a brain. In adult life such targeted strength is more likely to be rewarded, and may in fact evolve into a significant advantage. Children, however, are expected to be generalists, to be fairly good at everything, so that areas of weaknesses or disinclination may be viewed as problems rather than demarcations of individuality. When one deals with subtle handicaps, one strays into a borderland between true deficiencies and individual styles. (p. 534)

17 Given schools’ strong focus on the neurodevelopmental constructs of language and temporal-sequential ordering, children who have weaknesses in these areas may not benefit from instruction that relies primarily upon both constructs (Levine, 2002).

Specialized instruction provided via qualification for special educations services can be obtained only through a prescribed process that requires identification of a particular disability, such as a learning disability. Access to special education services is strictly controlled via a system of prescribed steps for specific learning issues such as reading, writing, and mathematics. Secondly, assumptions about previous discriminatory practices in placing children in special education resulted in a legal process with a “gatekeeping” approach to identification of a variety of special education categories, including learning disabilities.

Clinicians working with families tend to identify specific learning disabilities at a greater frequency than school based assessments (Warner et al., 2002). This is due to the clinician’s use of clinical measures, family data, and more refined definitions of specific learning disabilities based on increased understanding of neuropsychological processes.

The Learning Disabilities Association of America (LDA) defines learning disability as “a neurological condition that interferes with a person’s ability to store, process, or produce information” (2006). The LDA was incorporated in 1964 as the Association for Children with Learning Disabilities (ACLD). From those beginnings, the LDA has grown to serve tens of thousands of members with learning disabilities, their families, and the professionals who work with them.

18 For many clinicians the study of neuropsychological functions causes them to abandon the legal definition used by schools as too linear (Zera, 2001). Advances in neuropsychology demonstrate that specific deficits in school based skills are part of a more global neuropsychological deficiency with suggested subtypes. Rourke (1985) argues against the perception of students with specific learning disabilities as a homogeneous group. Along with many other neuropsychologists (Fuchs, Fuchs, & Speece, 2002; Levine, 2002; Tsatsanis, Fuerst, & Rourke, 1997), Rourke proposes various subtypes based on underlying neurological processes, which result in specific deficits in performance. Several experts in neuropsychology have attempted to identify subtypes of a learning disability based on the connection to a specific area of the brain.

One subtype, children of group RS, is characterized by impaired reading, word recognition, and spelling and is considered to have a language-based dysfunction. This group has relatively better mechanical arithmetic skills. These children experience mild to moderate difficulty in all linguistic tasks; however; they have normal visual spatial organization, with consequent better nonverbal concept formation and problem solving.

This subtype is often referred to as a language-based learning disability (Rourke & Fuerst, 1991).

The second subtype, children of group A, is characterized by poor visual spatial organization and perceptual skills and relatively better reading and spelling skills. This results in a series of performance deficits. Children of this subtype are usually deficient in arithmetic. They also experience problems with novel tasks. Children of group A, labeled by some as nonverbal learning disability (NLD) are described by Rourke and Fuerst

19 (1991) as more likely to be referred to as “emotionally disturbed.” This may be due to misperception of nonverbal cues in interpersonal relationships. Palombo (2006) elaborates further, explaining that although verbal language is a relative strength for these children, they “manifest difficulties in extracting the gist or main point of a story . . . they tend to draw literal or concrete meanings, missing the salience of the speaker’s intentions” (p. 107). Children diagnosed with a nonverbal learning disability can experience the impact of this deficiency in a wide range of activities that involve visualspatial information processing. There is controversy over whether this is the source of social-emotional difficulties.

Neuropsychologists, such as Zera (2001) and Obrzut (1995), argue for the existence of four basic subtypes of learning disabilities that can be combined to create multiple variations. In addition to the language-based learning disabilities and nonverbal learning disabilities described above, Zera and Obrzut are suggesting two more subtypes.

They have identified disorders of executive function and memory deficiency. Executive function impacts impulse control, attentional control, organization of information, and goal directed future orientation. Memory deficiency is often demonstrated in poor working memory or the ability to maintain and manipulate information for current problem solving. To further complicate matters, these neuropsychological deficits occur in a dynamically functioning brain that can display combinations of subtypes.

Neuropsychologists Rourke and Fuerst (1991) argue that clinicians should consider dysfunction in school based skills to indicate a dynamic process that cannot be simply attributed to structural differences in neurology, regardless of classification of

20 subtypes. For this reason each child should be viewed from the perspective of his or her own unique neuropsychological profile of strengths and weaknesses.

Due to the differing views of clinicians and the educational system in defining a learning disability, one performance based and one processed based, confusion results.

The diagnosis of a specific learning disability can be a vague and poorly understood label that may or may not provide children and families with information necessary to plan for their future.

The Process of Identifying a Learning Disability in Schools The concept of learning disabilities is defined by two different systems. Public schools are required to use the legal definition of a learning disability in determining eligibility for special education services. Clinicians use the definition of a learning disability based on neuropsychology and its evaluation of processes that underlie many of the academic tasks. This has inadvertently created dilemmas for families, clinicians, and the public school system.

Once a child enters the public school system, he or she falls under federally mandated criteria for qualifying as learning disabled. This system is mandated by federal law—PL 94-142, the Individuals with Disabilities Education Act (IDEA), and Section 504 of the Americans with Disabilities Act—that prohibits discrimination due to a disability (Meyen, 1988). In order to determine if a child qualifies as having a learning disability and is therefore eligible for special education, the child and family must participate in a Case Study Evaluation (CSE) that involves psychoeducational testing, a

21 social developmental study, and an evaluation of health concerns. The team, including the family, must then meet and decide if the child meets the legal criteria for a learning disability. The Individuals with Disabilities Education Act defines a Specific Learning Disability (a learning disability) as “a psychological processing deficit accompanied by a ‘severe discrepancy’ between intellectual ability and academic achievement” (Warner et al., 2002, p. 501). This definition creates difficulties because it did not operationalize “severe discrepancy.” This means that states have developed their own rubrics for severe discrepancy. Use of regression formulas, difference criteria of one to two standard deviations below average, poor achievement, or grade level deviations are used to varying degrees throughout the country. Thus a child may qualify for a learning disability in one school district and not in another according to legal definitions of learning disabilities. Schools attempt to identify a learning disability based on performance deficits in reading, mathematics, writing, or spelling.

Reactions to the Process Researchers and government agencies have attempted to understand or quantify the impact of being identified as having a learning disability on students or their families or both. Compared to the documentation of the performance and testing of students with specific learning disabilities, less has been documented from the perspective of the student and parent. A number of early studies charged that applying such labels as learning disabled caused a reduction in self-concept and the mother’s lower estimate of her child’s self-concept (Guskin, Bartel, & MacMillan, 1975; MacMillan, Jones, & Aloia,

22 1974). The National Council on Disability (1995) heard the testimony of over 400 parents and family members, but none from students. Parents reported feeling “largely left out of the process” (p. 11). They struggled with the specialized language used by professionals and were categorized as resistant if they requested a second opinion.

Some attempts to understand the experience of parents of children with specific learning disabilities are characterized by a focus on scales and questionnaires that look at particular aspects of parenting. A few studies look at the impact of the child with a specific learning disability on the parent or mother in terms of the level of stress or the use of various coping mechanisms (Faerstein, 1981, 1986; Fuller & Rankin, 1994). Other researchers focus on the parents’ impact on their adolescents, specifically in the area of self-concept and academic expectations (Coleman, 1984; Lynch, 2002; Stone, 1997).

Most of the studies find that students with specific learning disabilities rate themselves more highly than do their parents. Researchers speculate as to the impact of lower parental expectations on their adolescents with specific learning disabilities. Lynch claims to demonstrate higher self-perceptions among females with specific learning disabilities in regard to reading. She also claims to demonstrate a negative relationship between fathers’ self-efficacy and boys’ self-perceptions in regard to reading. The research in regard to all these measures continues to be inconsistent and contradictory, pointing to a more complicated picture.

Dane (1990), a social work professor, writes of her experience working with parents in her text, Painful Passages. She termed the experience of parents of children with learning disabilities as “sailing an uncharted sea,” an expression that seems to

23 capture the danger of a journey without adequate guides. A number of parents have the resources to publish evocative descriptions of their struggles (Buchman, 2006; Donawa, 1995; Holbrook, 2001). Each of these books or articles speaks to the ways in which parents attempt to cope.

Himrod (1995) interviewed 22 parents of adolescents with learning disabilities in an attempt to understand the experience more fully. Parents reported the challenge created by trying to help their child balance ongoing stresses while at the same time trying to maintain their child’s self-esteem. Parents tried to learn all they could about learning disabilities and legal rights, while developing their ability to be assertive. All this was done in order to effectively advocate for their child. Himrod termed this process “tooling up.” In part, the parents’ attempts to empower themselves are the result of feeling isolated or devalued in dealing with school personnel and others. Parents work to maintain their own self-esteem in order to effectively advocate for their child’s shifting learning and developmental needs. She found less evidence for the grief and sadness that other authors had predicted.

In the United Kingdom, parents report experiences similar to their American counterparts as identified by Himrod (1995). In a mixed method study Lindsay and Dockrell (2004) explored parent perspectives in relation to school practices. Parents expressed a strong desire for effective services in mainstream classes and in special placement classes. They experienced a great degree of frustration due to delayed identification of their child’s learning disability.

24 There is a paucity of studies that include students beyond the use of questionnaires and rating scales. These studies have been focused on the idea of selfconcept in its various forms. Reid and Button (1995) attempted to capture the experience of being determined to have a learning disability by constructing a narrative with a small group of these students during a summer program. The authors note that one of the students displayed an oral style that was “structured and coherent” but “sufficiently different from school expectations to be devalued” (p. 607). The entire process was conducted as a class writing assignment. In terms of content, the narrative had themes of isolation, victimization, and betrayal. These feelings were not actually a result of the label but rather were due to practices of physical separation in the school setting. This finding is consistent with earlier studies reporting stigmatization as a likely consequence of segregated classes (Guskin et al., 1975; MacMillan et al., 1974). Most of the students claimed not to recall why they had been labeled at all.

Selfobject Functions, Trauma and Narcissistic Injury From the perspective of self psychology, internalized psychic structure is the result of parental responsiveness. Children have everyday psychological needs “for parents (as taken for granted mirroring selfobjects) who spontaneously show pride and pleasure in them and participate with them” (Tolpin & Kohut, 1980, p. 426). The mirroring function includes spontaneous enjoyment of a child’s achievements. The idealizing selfobject function requires the parent to be “security providing, reassuring and

25 strengthening” (p. 426). These two selfobject functions are the key to an internalizing process that is the result of identification with the strong and capable adult.

For the child with a learning disability, the neurological deficit acts as a lens through which all experience must pass. There is a risk that either the parent may fail to maintain adequate selfobject functions or the child may be unable to perceive them (Palombo, 2001). If this disappointment or failure of the environment to provide what growth producing elements the child needs is chronic, a traumatic experience can occur.

“The primary trauma responsible for the disturbance may be found in the relationship with the parent or the parenting figures at the crucial developmental phase” (Palombo, 1976, p. 152). This type of trauma does not refer to the classic understanding of trauma as due to a single sudden blow, or Type I. Lenore Terr (1992) describes another childhood trauma as Type II due to “longstanding repeated ordeals” (p. 167). What makes an experience traumatic is the “series of blows, rendering the young person temporarily helpless and breaking past ordinary coping and defensive operations” (p. 168). She includes in Type II trauma the child’s experience of anticipation and dread of the expected negative experience.

The experience of overwhelming distress that disorganizes the child beyond the level of normal coping mechanisms is described by self psychologists as fragmentation due to the loss of self-cohesion. The child is unable to integrate the experience and manage the anxiety, thus resulting in the loss of self-cohesion. The common response to such an interpretation of experience is “shame, anxiety, depression, discouragement or feelings of incompetence” (Palombo, 2001, p. 77). The task of integrating shared and

26 intrapsychic meanings is an ongoing process that dramatically impacts the child’s development.

Self Psychology and the Self-narrative For Daniel Stern (1985), the development from infancy to latency includes the growth of a self in five stages: the emergent self, core self, subjective self, verbal self, and narrative self. For Stern, the narrative self is the culmination of these experiences. As described by Palombo (2001), a coherent self-narrative can act to support a cohesive self.

A coherent self-narrative, by definition, includes not only internal coherence, but also coherence with shared meanings. The lack of coherence in a self-narrative is the result of a conflict in meaning between the experience of the student or child and others in his community. The school is one of the key communities and sources of expectations for children and adolescents. It is the experience of not performing as expected in the school setting that initiates the process of being identified as having an a learning disability.

The dynamic sense of self and the self-narrative parallel each other in development, constantly integrating experience. They do not have a direct relationship but can influence each other. A variety of combinations is possible. The coherent selfnarrative has a “vital role� in supporting the development of a cohesive self (Palombo, 2001, p. 44). However, the child can also have a coherent self-narrative but still experience a lack of self-cohesion due to the experience of feeling vulnerable, due to a deficit in selfobject functions. The child with a learning disability may not maintain a sense of inner organization in the face of lost selfobject functions, inability to use these

27 functions due to a learning disability, or inability to compensate for deficits. When this failure occurs, the child experiences emotional distress, often in the form of anxiety. In any of these cases, the self-narrative provides us with a window to the inner world and how the external world has been understood by the child.

A lack of self-cohesion has been said to “constitute a state of self disorder” (Wolf, 1988, p. 65), which is, in effect, due to a lack of selfobject functions. Palombo’s (2001) writings have explored the potential for learning disabilities to negatively impact the provision of selfobject functions. A number of quantitative studies have attempted to find relationships between learning disabilities or specific types of learning disabilities and psychopathology. Investigators have found that 38 to 75% of students with nonverbal learning disabilities are also identified as having social-emotional problems (Bryan, Burstein, & Ergul, 2004). In a review of 600 children referred to speech pathology clinics, the prevalence of psychiatric diagnosis was 50% (Toppelberg & Shapiro, 2000).

Studies looking for a correlation between learning disorders and psychopathology have been inconclusive (Lamm & Epstein, 1992). A number of researchers claim that this is due to the heterogeneity of learning disabilities. In fact, one study attempted to differentiate subtypes of learning disabilities and subtypes of psychosocial functioning. It hypothesized that a psychosocial disturbance was “a direct expression of the same pattern of neuropsychological assets and deficits that underlies the academic learning difficulties of the child” (Tsatsanis et al., 1997, p. 491).

In a study that looked at the reverse, the resilience of children with specific learning disabilities was found to include positive child factors, such as temperament or

28 social competence; family factors, such as supportive parents and consistent rule setting; and community factors, such as positive relationships with significant adults and a supportive school environment (Morrison & Cosden, 1997).

Self Psychology and Early Adolescence Adolescents arrive at this phase of life needing a new set of selfobject functions.

The provision of these functions, appropriate to the child, also contributes to the adolescent’s sense of self-cohesion. Thus the “idealized parent imago� includes an experience of protection, self-regulation, and a value system (Palombo, 1988, p. 179).

The form of these selfobject functions must change over time to a more mature or symbolic form (Palombo). There is an implied challenge to the parent of a child with a learning disability to maintain adequate selfobject functions while recognizing increasing maturity and development.

From a self psychological perspective, early adolescence provides an opportunity for a higher level of integration and reorganization of meanings into the self-narrative.

This is a departure from previous psychoanalytic theories that viewed adolescence as a recapitulation of earlier developmental phases. The self-narrative continues to evolve throughout life as new experiences are integrated and brain functions mature in terms of the formation and retention of nonverbal and verbal memories (Palombo, 2001).

Research by Jay Giedd, Chief of Brain Imaging in the Child Psychiatry Branch at the National Institute of Mental Health, reveals dramatic changes in the normal adolescent brain (Wallis & Dell, 2004). A second period of pruning and proliferation of

29 neurons and their connections impacts higher level mental functions. This development moves from back to front, from the sensory processing areas to the prefrontal cortex, an area understood to be responsible for executive functions. These functions are responsible for planning, goal setting, inhibition, and organizing thoughts. This timeframe appears to coincide with the Piagetian concept of the development of formal operations, which allows the individual to move from concretely based thinking to abstract thoughts and concepts (Piaget & Inhelder, 1969).

This ability to think abstractly about oneself, caregivers, and experiences in the community provides an opportunity for transformation of the self-narrative and the resultant sense of self. Past experiences are reinterpreted and reintegrated within a different set of meanings than previously existed. Thus, a new opportunity is provided the developing adolescent to reformulate the self-narrative. This reformulation has the potential to increase the coherence in the narrative and potentially support a more cohesive experience of self.

The dynamic process of maintaining a state of self-cohesion relies on the ability of the individual to organize, synthesize, and integrate self experiences. Self-cohesion is a desirable achievement that results in a state of “self consolidation, firmness, vigor, vitality, and harmony� (Palombo, 2004, p. 62). Writings by Kohut (1984) lead to the differentiation of the concept of the cohesive self as innate factors present at birth versus the concept of the nuclear self as the result of further consolidation that occurs over time due to the internalization of selfobject functions. Given the lack of representation of the

30 voice of students’ who have learning disabilities in the literature, their self-narratives provide a window into the developing sense of self.

31

CHAPTER III

METHODOLOGY

Aims of Study This study gives voice to young adolescents with learning disabilities. They stand at a developmental position of growing ability to reflect and think abstractly about their experiences (Piaget & Inhelder, 1969). Their voice is singularly underrepresented in the research, so this study adds to our understanding of the experience of a learning disability by describing the experience from a new perspective. Data were gathered in the form of self-narratives to understand the lived experience of a learning disability.

Definition of Major Concepts The definition of a specific learning disability is defined legally by PL94-142 as “a psychological processing deficit accompanied by a ‘severe discrepancy’ between intellectual ability and academic achievement” (Warner et al., 2002, p. 501). For the purpose of this study, this definition as used by public schools was used as the determinant for eligibility in the study. This provided the researcher with a clearly defined population from which to seek participants.

A self-narrative is described for the purpose of this study as “the broad set of communications through which children tell us about themselves that reflect the

32 organization of their experiences” (Palombo, 2001, p. 43). This allows the researcher to use not only the spoken word but also other forms of communication, such as art work, communication through action, or any other ways that participants might use in order to relate their experience.

Statement of Assumptions 1.

The phenomenon under study is the experience of having a learningdisability. A phenomenon is defined as “a fact or occurrence that isperceived” (The New International Webster’s Dictionary of the English Language, 1997, p. 380).

2.

The researcher assumes that this lived experience of having a learning disability has psychological, social, and emotional consequences.

3.

Phenomenology assumes that to perceive a phenomenon is a meaning making activity.

4.

It is assumed that Van Manen’s (1990) hermeneutic phenomenology is a methodology that allows one to study the personal or individual meaning assigned to a phenomenon against the backdrop of social meanings. It therefore requires retrospection or the ability to reflect on the past.

5.

It is assumed that young adolescents with specific learning disabilities are capable of conveying meanings by telling stories, recalling the past, and reflecting on their experience. This is based on sound concept formation, a grasp of cause and effect, and appropriate sequencing.

6.

It is assumed that due to the above; students on the autistic spectrum would be unsuitable for the study.

33 7.

It is assumed that an interview format is suitable for accessing the selfnarrative of adolescent subjects with learning disabilities.

Research Design and Strategy The task of giving voice to those who have not been represented is well suited to the wide-ranging epistemological stance of qualitative inquiry. Qualitative research is interpretive by definition because data are filtered through the perspective of the researcher. The meaning of data is emergent rather than tightly prefigured. The researcher’s interpretive process is used to reveal concepts and relationships in the data (Strauss & Corbin, 1998). A qualitative approach recognizes the value laden nature of any inquiry. As such, it represents a holistic view of social phenomena (Creswell, 2003).

The characteristics of qualitative research are a good match for the particular research questions of this study.

This form of human science research is termed human science for an action sensitive pedagogy (Van Manen, 1990). It seeks to stimulate retrospective reflection on lived experience in dialogue with another. It asks not, “What is the best curriculum for this child?” but rather, “How does this child experience this curriculum?” The next step is to describe the experience so thoroughly that it evokes a fuller awareness of the significance of the experience. In this process, writing mediates reflection and action. The writing of research results creates an interpretation of an interpretation. The pedagogic intent provides a “strong and oriented relation” of the researcher so that the writing is both a creative reflective stance and an analytic methodology. This researcher agrees with

34 Van Manen’s contention that pedagogical research often becomes so abstract or political that it completely loses touch with the lifeworld of children. This strategy allows the researcher to capture what is hidden about the experience of children, specifically in regard to the process of being identified as having a specific learning disability.

Sample: The Study Participants Student participants and their parents were informed about the study through distribution of my letter of invitation (see Appendix A) by the school staff, emails from special education teachers, personal contacts from special education teachers, or my personal invitation given during presentations at a high school. Fifteen families contacted me regarding participation. Twelve families actually chose to schedule the interviews.

Students and parents were screened during the initial contact for suitability for the study using the following guidelines: 1.

Student participants must have been identified by a school district as qualifying for special education due to a specific learning disability.

2.

Student participants were not limited to language based learning disabilities as was originally intended in the study design. It became apparent that such a limitation would minimize the number of available participants.

3.

Student participants must be willing to participate and be free from any coercion from parents or interested parties.

35 Originally the study was designed to limit the sample population to those students with language based learning disabilities only. It was assumed that by doing so, any differences in experience due to differing types of learning disabilities would be eliminated. A decision was made early in the process of locating participants not to limit interviewees to language based learning disabilities. There were several reasons for this decision. First, from a practical perspective, it was difficult to find students who would be willing to participate who had only language based learning disabilities. Second, many of the students who did wish to participate had a strong desire to be heard. Third, as I began to interview I discovered that it was the experience of difference, which preceded the discovery of the learning disability, that was most significant for all of the students. I chose therefore to include students with all types of learning disabilities, except for students on the autistic spectrum. I made the assumption that students on the autistic spectrum would be less able to provide a self-narrative that included an understanding of social interactions and internal processes.

As a qualitative study, the sample was not intended to be representative or to provide generalizable results. It was intended to provide a deeper exploration of the experience of having a learning disability than has been present in the literature. All but 1 of the 12 student participants lived in the suburbs of Chicago. They ranged from the far northern suburbs to the far western suburbs to the Southwest Side of Chicago. Half of the students began their academic life in private schools. At the time of the interview, eight of the student participants were in public schools. The remaining four student participants attended private schools with staff trained to provide specialized services.

36 The sample was composed of four boys and eight girls. The student participants ranged in age from 13 to 15ž years of age, 11 of whom were Caucasian and one of whom was an African American/Hispanic student. Eight of the students lived with intact, two-parent families. All of the students and their families were middle- to upper-middle class. Several of the student participants had disabilities affecting reading; most of the students had also qualified for other areas of disability, such as speech, writing, spelling, memory, processing speed, visual spatial perception, and mathematics (see Table 1).

Two students also had a diagnosis of ADHD, which is considered a health impairment according to legal categories, and I suspected another would also qualify.

Both of the identified students did take medication for the treatment of ADHD. Neither was receiving any type of therapy. In this nonclinical population, one of the students in the study had previously worked with a social worker regarding family issues related to a parent’s illness. One other student had a brief contact with a school social worker.

Data Collection This is phenomenological research; therefore, the scope of the study was narrowed to the personal experience of a relatively small number of students in order to achieve depth of understanding. The intensive method of phenomenological research dictates a relatively small sample size. A purposive sample of 12 students with learning disabilities, from ages 13 to 15 years old were interviewed in the home setting. It was

37 Table 1 Participant Data Age Participant

Age Identified Specific Learning Disability

Initial

Current

School

School

CBCL

Participants with a “Different/Normal” Narrative Bill

14

5

Reading, Writing

Public

Public

Normal

Nancy

15

10

Reading, Writing, Memory

Private

Public

Normal

Susan

15

10

Math, Processing Speed

Public

Public

Attention

Tom

15

7

Reading

Public

Private

Normal

Participants with a “Different/Not Normal” Narrative Beth

14

6

Math, Visual Spatial Deficit

Public

Private

Normal

Cathy

14

14

Reading

Private

Private

Normal

Christine

14

9

Math, Reading, Spelling

Public

Public

Somaticizing

Ellen

15¾

9

Reading, Spelling,

Private

Private

Normal

Public

Public

Attention

Receptive Language Jim

13

5

Speech, Reading, Math, ADHD

Socialization Mark

15

5

Math, ADHD

Public

Public

Attention Socialization

Mary

13

7

Reading

Private

Public

Somaticizing

Sarah

14

6

Receptive/Expressive Language,

Private

Public

Normal

Auditory Processing

38 anticipated that participants would have varying degrees of difficulty with the use of written and spoken language. For this reason, informed consent forms (see Appendix B) were read to the student with frequent checking to determine the participant’s understanding. During the interview, questions were stated in many different colloquial formats with attention to the language preferred by the participant.

Van Manen’s (1990) phenomenological method of data collection is understood to be interactive and reflective between interviewer and interviewee. Therefore, the second interview was essential to elaborate on reflection that was set in motion by the first interview and to confirm the researcher’s initial understanding of the first interview.

All students received a gift card of their choice valued at $15. Data were collected in four forms: 1.

A child behavior checklist (CBCL/6-18) completed by the parent during the first interview and used by the researcher to guide the follow-up interview.

2.

Two semi-structured recorded interviews (see appendix C).

3.

A descriptive data collection form to obtain specifics of the learning disability and relevant information for the interview (see Appendix D).

4.

A personal researcher log.

The child behavior checklist (CBCL/6-18) is a clinical tool for children ages 6 through 18 years of age. The CBCL is one of several behavioral assessment tools created

by Achenbach Systems for Empirically Based Assessment (ASEBA). Parents provide information for 20 competence items covering their child’s activities, social relations, and

39 school performance. The CBCL has 118 items that describe specific behavioral and emotional problems, plus an opportunity to report additional problems. Parents rate their child for how true each item is now or within the past 6 months using a Likert scale (Achenbach, 2006). The CBCL scoring profile provides raw scores, T scores, and percentiles for competence across a variety of activities and settings. It also provides syndrome scales for externalizing and internalizing responses along with reports of attentional or social problems.

The CBCL was used to provide the researcher with an understanding of the child’s context as indicated by the parent’s perspective. Placing the child within a social and educational context is part of understanding the lived experience of the child. The child constructs meanings within this context, which reflects the confluence of differing social, familial, and educational understandings. The CBCL was not used with any intent to identify clinical significance but only to inform and guide the researcher during the follow-up interview. This specific use of the CBCL was carefully explained to student participants and their parents and may have impacted how they used the scales.

The interview process is a key source of data in the phenomenological strategy. It provides access to the lived experience in a way that elicits detail and feeling. The interview provides the opportunity for in-depth descriptions with explanations, examples, and stories. One’s own experience is a starting point for orienting the researcher to the phenomenon. My experience as a school social worker and my understanding of the process of identification of learning disabilities served as points of reference during the interview. A semi-structured guide acted as a starting point for the interview; however,

40 participants were encouraged to “tell their story� as they saw fit. The interview process was interactive and at times intense as, together with the participant, deeper aspects of their experience were explored. Their stories, reactions, and current life stimulated further reflection and insight during the process. In keeping with the chosen methodology of hermeneutic phenomenology, my own empathic response also steered the interview process and became part of the data via a personal log.

Student Consent and Confidentiality Awareness of power differentials and vulnerability was also an aspect of managing sensitive material with the student participants. Power can be expressed via control of the interaction, control of information, or use of ingratiating techniques to influence the interviewee (Lee, 1993). Bearing in mind the possible misuse of power, care was taken to provide an open and thorough disclosure of the goals of the researcher and procedures to be used. One potential participant revealed in private that she had been compelled by a parent to participate. She was highly defensive and had no desire to discuss her experience. She received the standard gift for her time of a $15 gift card and our discussion of her situation was not included in the study. Her parents were not told of her decision.

For some student participants the interview provided a cathartic experience. The emotional risks attached to the interview may have actually made them attractive to respondents (Lee, 1993). The researcher has a responsibility to protect the respondents not only in terms of confidential information but also in terms of emotions that are

41 aroused or expressed as a result of the interview process. Students were offered an opportunity to pause the interviews, reminded of their freedom to terminate participation, and offered time to process the emotional response without recording. All of the participants chose to continue, citing their determination to have others understand their experience. Although debriefing sessions with the researcher were offered to students or parents in addition to the interview process, no one chose such an option. My experience as a clinician was advantageous in assessing, managing, and responding to issues of vulnerability in the interview.

Clear procedures to protect participant confidentiality were explained as part of the process of informed consent. All consent forms were read to the participants with questions asked in a sensitive way to confirm their understanding. These procedures included the following: 1.

Participant descriptive data were maintained on only one form and it was kept in a locked file cabinet.

2.

Participant numbers were assigned to each data form.

3.

All other data, such as typed transcripts, used only the participant number for identification.

4.

Interviews conducted in the home in a private location.

5.

The use of pseudonyms or assigned numbers without reference to specific schools or locations.

6.

All data are to be destroyed 3 years after completion of the study.

42 Data Analysis Data analysis is the process of discovering what may be hidden or unformulated in the gathered data. This is a slow and thoughtful process that requires not only familiarity with the data but is also an interpretive act. Several procedures occur on the way to the final data analysis.

The first procedure is to organize the data by transcribing the recorded interview and field notes taken during the interview. Interviews were read first for overall sense and then studied intensively according to the method described by Van Manen (1990). His method involves a conscious examination of the language used by the interviewee and interviewer. Both interviewer and interviewee seek words to ground their experience. The etymology of a word helps us trace the impact of original versus current meanings.

Idioms provide an often tenuous connection to the primordial experience. Anecdotes hold a particular significance in this methodology as a conversational narrative that can make comprehensible what the speaker cannot clearly articulate. The researcher must attend to the form of the interview, its silences, level of affect, and language.

The researcher reflects on all of these components while looking for themes. A theme is defined as an “element (a motif, formula or device) which occurs frequently in the text” (Van Manen, 1990, p. 78). This is not a prescriptive process but is “a free act of seeing meaning” (p. 79). Each element hints at a part of the whole meaning of the phenomenon.

43 To assist in the tracking and relations among themes, the researcher utilized the computer software known as ATLAS ti. The computer did not provide the actual analysis but facilitated the ordering of data in the following ways: 1.

Transcription of interviews and field notes.

2.

Coding, which is the attaching of key words to segments of text.

3.

Search and retrieval across interviews.

4.

Data lining to form categories and clusters of networks.

5.

Memoing, which is the writing of reflective commentary for the purpose of greater reflection.

The ATLAS.ti program allows ease of searching, marking, linking, and reorganizing, which provides greater consistency for the researcher’s reflective process (Weitzman, 2000). It does not perform the actual analysis. The use of coding is presently one of the best supported approaches as a preliminary step for ordering data (Weitzman).

Coding was used to identify large categories via line by line identification of subcategories and their relationships to each other. As the categories and subrelationships are identified, a matrix is developed that shows the range of conditions affecting the phenomena being studied. The ATLAS.ti program allowed rapid comparison of common concepts across several respondents’ interviews. This was followed by member checking during the second interview, which provided respondents with a preview of the researcher’s interpretation. Respondents were given the opportunity to validate or question the researcher’s representation of their experience. This feedback was used to further focus interpretation of the data.

44 Another intermediate step was memo writing. This step was used to elaborate processes, assumptions, and actions that may be subsumed under codes. It is here that the researcher grapples with many ideas, interpretive understandings, and relationships between categories. Consultation with the dissertation committee provided further opportunity to wrestle with ideas and interpretations. This is the preliminary step before actually writing the theoretical findings of the research.

Finally, the analysis of the data generates interpretations by the researcher. These interpretations are expressed in written language. In the process of writing, the researcher performs a last reflective act. As the researcher writes, judgment is used in terms of what to include and how to portray it in an organized yet evocative way. It is an interpretive depiction of the respondent’s interpretation. Throughout this process I maintained a commitment to giving voice to the students themselves.

Limitations There are a number of limitations posed by this phenomenological study due to the small sample size, the use of narrative truth versus historical truth, self-selection of participants from a vulnerable population, the choice to avoid objective measures of affective distress or severity of learning disability, and the preferential participation of female participants versus male participants.

As a qualitative study with a small number of participants and a nonrandom sampling technique, it was not expected that the findings will be generalizable. No attempt was made to seek a particular socioeconomic, racial, geographical, or gender

45 distribution in the sample. The aim of this study was to provide a new perspective on the experience of having a specific learning disability by giving voice to the students. As a vulnerable and underrepresented population in the research, this study is a first step in the exploration of their experience. The phenomenological strategy seeks a deeper instead of broader understanding of the phenomena and hopes to stimulate further research.

Second, this is a subjective view of the experience. This study captured narrative truth or the participants’ interpretation of events. No attempt was made to claim historical truth based on events or interactions as described by the students. The style of the retelling of students’ narratives may sound as if it represents objective reality, but this a descriptive style of writing that allows the reader to become immersed in the student’s understanding of their experience. The specific views of parents or actual data regarding school testing or performance were not used to compare or contrast to the student perspective. Empirical studies mentioned earlier have explored these other perspectives extensively and hypothesized about their impact on the students. Attempts to gauge the impact on students have traditionally used scales and measures of academic performance.

Although empirical studies have an important place in the understanding of various phenomena, this study sought a fuller and deeper description of the impact of a learning disability, not confined to other empirically measured concepts through the use of scales or structured questionnaires.

Third, this vulnerable population was self-selected. The student participants were those who were able to overcome their desire to minimize or hide their learning disability. Speaking in an interview format specifically about a topic they personally may

46 try to avoid required their own personal goal. Most of these students identified their reason for participation as “helping others like themselves, wanting others to know how it really is for them, and recognizing all the help that they receive.” Unconscious participation may have included a desire for emotional catharsis, an opportunity to speak about what has been kept hidden, and a chance to assert their membership in the group they termed “normal.”

Fourth, no attempt was made to specify different experience based on type of specific learning disability. No measurement of the degree of distress or the relative severity of learning disability as objectively measured, was attempted. Again, this was due to recognition of the emotional and psychological vulnerability of this group and a desire to see through the eyes of the students.

Fifth, females outnumbered males in this study at a ratio of two to one, limiting the study’s narrative data in terms of the male experience. This self-selection process was explained in the student narratives by general coping styles. Female students found that talking relieves distress while male students preferred not talking about their difficulties.

In fact, male students specified that “not talking” about their learning disability was a defensive strategy they found to be effective. Female students reported “feeling better” after the interview process whereas male students either denied any affective response or merely indicated that talking about their learning disability was unusual and somewhat difficult, but prompted by the desire to help others.

Although limited in terms of sample size, this study provides a deeply personal and in-depth description of the experiences of students with learning disabilities. Their

47 understanding of their learning disability and their perception of the responses of significant others in their environment presents the reader with an original perspective of crucial themes in their lived experience.

48

CHAPTER IV

FINDINGS

Organization of Findings The findings chapter is organized around the themes that emerged in the stories of student participants as they described the phenomena of having a learning disability.

Though their testimony is captured in this moment of time, perceptions and meanings are part of a dynamic process and continue to be influenced by ongoing development. The interview itself became part of this process. For all of the student participants some degree of negative affect was stirred by reflecting on and speaking about their ongoing experience of having a learning disability.

These students were clear about their desire to help other students like themselves and were prepared to tolerate some distress in order to do so. It was important for them to be heard. Several student participants told me that it felt “good” to finally have been able to talk about their experiences. One student was surprised to realize, “No one has ever asked me.”

I present here not only the most accurate rendition possible of their experience but also my understanding of what lies beneath the words. I carefully checked my understanding with each student at our second interview. Together we captured the shifting understanding of their experience from early school days to the present time.

49 Therefore, these themes will be described in narrative fashion with an attempt to recreate the dynamic chronological process described by the students.

The findings are presented as a textural and structural description of having a learning disability. In phenomenology, a textural analysis captures and elaborates the lived experience. The thoughts, feelings, and key features of the experience are captured in narrative form. A structural analysis provides the reader with the researcher’s understanding of the underlying dynamics of the experience. This is the result of not only an analysis of participants’ use of language but also the researcher’s experience of being with the student (Moustakas, 1994). I chose a synthesis of both styles of analysis as the richest depiction of findings for this study. For each narrative type, I have interwoven both the textural and structural analysis with a structural summary. Although the two types of narratives were displayed by both genders, there were some notable gender differences noted in this sample of four boys and eight girls. These differences are discussed prior to the final summary of findings.

The Question of Difference A central theme for the student participants is the resolution of the understanding of difference as it relates to being normal. Feeling different, being treated differently, or performing differently causes them to question being normal. The experience of difference usually occurs prior to the determination of a learning disability. Student participants attempt to understand the significance of the difference. They ask the question, “If I am different, am I normal?” The answer to the question leads to two

50 different types of narratives. These narratives are a co-construction of meanings from parents, teachers, peers and personal experience. The answer of either “different/normal” or “different/not normal” has a cascading series of effects on their view of themselves, their use of help, their relationships with parents, peers, and teachers, and their coping strategies.

Four student participants in the study had clearly resolved the question as “different/normal,” and eight student participants perceived themselves as “different/not normal.” The findings will begin with the advice provided by the student participants.

This will be followed by a textural and structural presentation of the two narrative types “different/normal” and “different/not normal.”

Advice Student participants not only wish for their experience to be understood but also wish to help other students like themselves. Each student participant has specific advice for other students and adults. I provide the advice given first from the perspective of those student participants perceived as “different/normal” followed by advice from those student participants perceived as “different/not normal.”

Those students who view themselves as “different/normal” wish to convey to other students the importance of using help. These students encourage the younger students not to fear being treated as if they were “retarded” if they used help. Help, they insist, allows you to “act normal and be treated as normal.” These students are adamant that being treated as normal means that a teacher’s help is based on a complete

51 understanding of the specific learning disability. In this way each student is guaranteed the opportunity to figure out strategies that are the most efficient way for him or her to learn.

Getting the help to figure out how to learn is the only way to be successful. Being successful provides a way to manage the learning disability by putting it in its place.

They advise younger students to avoid acting as if a learning disability is a big deal. Such behavior gets peers to act as if it is a big deal, creating more problems.

These students value their relationships with their teachers due to feeling “cared about.” They urge teachers not to wait until students ask for help, because “young kids can get confused.” As always, the most important admonition was to avoid making the learning disability a “big deal.” The teacher’s offering of extra time before and after school is very helpful. Student participants appreciate smaller, calm class settings that have less stress or tension.

They also have confidence in parents to provide just the right kind of support.

Help from parents is best given with focus on the role of parent, not teacher. Parents who are understanding and do not pressure, reinforce the perspective of “different/normal.” It is positive to be able to seek help from a parent, but control of the process is key for the young adolescent student.

The advice from students who see themselves as “different/not normal” reflects their own experiences and longings. They advise younger students not to give up, not to get frustrated, and to try harder. One student believes that younger students with learning disabilities feel very badly. The best advice to help this younger student is to “tell them a

52 little lie, make them feel better. Tell them Michael Jordan has learning disabilities too.”

Another student feels it would be important to try to help younger students understand their learning disability earlier so “you have time to think about it.”

These students have a great deal of advice for school personnel. They ask that teachers not pressure students or ask for work to be done faster. “I would say to them, ‘Teachers, find your patience, hold onto your patience.’” They do not want teachers to single them out it any way. Help should be offered inconspicuously. But, when teachers see someone struggling, “don’t wait, offer the help.” Finally, kindness, patience, and a sense of humor make it much easier for these students to learn.

Many of these student battle with parents over the timing and amount of work to do at home. They want their parents to hear them in terms of their frustrations, and they wish for parents to give them more choices as to when and how help is be given. The provision of emotional support in the form of being understood is important. Home is to be a “safe place.”

This advice demonstrates very different perspectives on getting help versus the need to protect oneself. These two perspectives are further elaborated in the two types of narratives, “different/normal” and “different/not normal.”

“Different/Normal” What does it mean to be different, to be treated differently or to feel different?

The word different has a number of common meanings: to be unlike someone else, to be distinct or separate from others, or to be unusual or contrary to norms or expectations

53 (Oxford Dictionary, 1992, p. 239). By itself, the term has no particular positive or negative value. Understood in context, the heart of hermeneutic tradition, different can take on an emotional valence with a wide range of positive to negative connotations. On the positive end, different can be a compliment, as in a distinction that makes one better than usual. However, to a child, different has a negative valence when it is a distinction that places a child outside of a peer group. On the other hand, a difference can also be insignificant, as in eye color. Each student is challenged to interpret the specific contextual meaning of the difference experienced due to their learning issues.

In these narratives, the perception of difference is influenced by the external and internal environment. “I just felt kind of weird compared to other people. Because they were getting the better grades and I wasn’t and everything.” Student participants often use the term “weird” to describe an affective response to a difference in performance.

Weird is commonly understood as “involving or suggesting the supernatural, unearthly or uncanny, fantastic or bizarre” (Oxford dictionary, 1992, p. 1043). The experience seems mysterious and unexplainable. There is also a feeling of discomfort, an unpleasant sensation, tinged with fear. Part of the students’ experience of feeling weird about their school performance is that they can’t relate it to anything in their actions or under their control. This early experience of difference elicits painful, anxious affect.

Student participants ask the question, “If I am different, am I normal?” This is at the heart of the significance of different. If I can be normal and different, then the difference is not so significant; or if the difference is insignificant then I am normal. One understanding of normal lies in its inclusive quality. Normal is defined as “conforming or

54 constituting a norm or rule, conforming to a type standard or regular pattern, occurring naturally. It also can mean characterized by average intelligence or development, free from mental disorder” (Oxford Dictionary, 1992, p. 605).

I confess to being surprised at the specific reference to intelligence and mental disorder when I checked the definition. I had always understood the other meanings, but not the specific reference to intelligence. The student’s concern with normal is related to being both free from mental defect and being entitled to membership in a larger group of average, and therefore “normal” treatment by others. The students describe normal as the opposite of stupid, which is “unintelligent, foolish, uninteresting, boring” (Oxford Dictionary, 1992, p. 907). Being perceived as stupid or feeling stupid is often a student’s greatest fear and denies them the position of “normal.”

The Way to Normal Four student participants clearly evidence a sense of themselves as “different/ normal.” This means that they determine the difference to be of minor significance that does not impact their membership in the larger group termed normal. They also feel free of any significant defect or deficit. This is an achievement reached in concert with input from parents, teachers, and peers.

By the age of 6 Bill was diagnosed by the school district as having disabilities in the areas of reading and writing. At the time of the interview he was in the middle of his eighth grade year at the public school. He had been receiving support in the form of special education services, with modifications of his work and additional opportunities to

55 practice and receive more personal assistance. Bill has decided that he is really not different from anyone else, in spite of his attending special classes or going after school for additional help. His story reveals several themes common to the “different/normal” narrative.

He has resolved the question of “How different am I?” in this way: “Some people’s brains are bigger than others and can take in more information. Some people are faster, some are taller. . . . I can focus and learn.” He highlights many differences and relegates his difference to one of many while he focuses on what he can accomplish. He gives some credit to his parents for “shutting down” the idea that his learning disability meant he was different. At first this was difficult for him as he struggled with reading in the early grades. “Reading was harder; I couldn’t read as fast and understand all the words and the spelling. I had to work hard to remember the words more than most kids.”

He describes his relationship with his mother as “closer because she likes explaining things.” He believes that his mother is someone who understands his learning difference. He likes the way she encourages him to use strategies that support his performance. He does not sense that she is disappointed in him and in fact feels encouraged that his difference is not a limitation in any way.

Teachers are, for Bill, helpful allies who provide learning strategies as well as protection from ridicule. He is grateful to his teachers who have been “helpful my whole life.” He remembers a time in kindergarten and first grade when some of the teachers did not seem to “get it.” They would insist that he could read if he just tried. Bill believes that having a good teacher is of the utmost importance. In fact, he says, “Just helping makes

56 me seem normal, too.” Bill sees that he is able to perform well with the strategies he has been taught to use. His actions in using help have a direct bearing on his success. He has been using these strategies since he was very young so that by the time he is in middle school he is completely convinced of their benefit. His perception of success is important; he claims it allows him to shrug off any comments by peers.

Bill claims to have little experience with taunting from peers. He can think of only three times that peers tried to tease him. After saying, “You suck at reading,” an offending peer went for a walk with the teacher. He doesn’t really mind the few times he has been teased, seeing this as more a problem with the teaser than the person being teased. He reports less experience with teasing compared to others in the study. Bill feels he has a secure place with his friends, “completely normal, they just accepted me. It’s just a little learning disability in school, nothing big, so completely normal. I do the exact same things everyone else did. Sometimes I’d have a little trouble reading and they’d help out.” Bill has a place with his friends and insists that his learning difference is not hidden nor should it be.

No Big Deal Tom, a freshman in a small private school, had tried hard to convince others and himself that the difference did not exist at all. He had the experience of always being last.

He laughed at himself during our interview as he explained his earlier behavior.

There was a time when people would say that and I’d say, “No, I don’t know what you are talking about. It doesn’t take me that long.” Then I actually realized that it did and I said, “Yeah, you’re right.”

57 At that time, Tom simply did not want to acknowledge being last. It was too painful to acknowledge. It was a difference that he perceived as negative. It would have been a difference that set him apart from the group. It was something to be avoided even at the point of denying what was patently obvious.

Now Tom is able to acknowledge the difference. After staying in class for extended time on a test, he joins his peers on the playground. “If I’m the last out and they’re playing baseball, they say, ‘Finally, he decides to show up.’ Then I play ball. It’s not mean or anything.” Here his peers actually acknowledge the difference but at the same time relegate it to an insignificant difference. The implication is that it is his prerogative to take his time. His arrival is heralded. He is a valued member of the baseball team. His being slow to finish his work does not impair his membership in the group. It is safe for his peers to acknowledge since his place with them is understood as secure. It is in part their acceptance of him and this minor difference that alters his perception of it. It is “no big deal.” But it is also an accomplishment that Tom can hear the comment without an immediate defensive response.

Rescued from “Different/Not Normal” Unlike Bill and Tom, who were identified with learning disabilities in first grade, Nancy’s learning disability was not identified until fourth grade. Her first academic experience was at a private school. Nancy describes the teachers from the school as “cruel and uncaring” even though they insist they can help her. She felt injured by the looks they gave her when she asked a question. At the end of third grade, Nancy

58 completed a paper only to be given an F. After rewriting the paper with her mother’s help she received a second F. “It made me furious. I did everything right, I followed the rubric . . . it just made me so angry.” Baffled by her failure, Nancy used the strategy of only asking family members for help. Hating school and struggling to attend, she developed a sense that she is stupid which feels “weird.”

Her peers confirmed this opinion of herself. “They treated me different from everyone else. They didn’t really talk to me as well as other kids because they knew I was doing poorly in school. I thought that’s just fine.” Nancy tried hard and without success to “not think” about her experience at school In her fourth grade year, Nancy had a teacher who cruelly warned her that she would fail the grade. Nancy’s understanding was that somehow the principal stepped in and Nancy was diagnosed with a learning disability. Following that intervention Nancy moved to the local public school where she began to receive special education services.

At first Nancy was frightened at the prospect of leaving friends and adjusting to a new school. She was provided with special education services and was pulled out for one-onone instruction with a teacher. At first this causes her to get the “weird” feeling again, as if she is in trouble, but then something amazing happens.

Nancy began to get good grades. She sees the teachers and the strategies they propose as helpful. Early in her time at the new school she met some new friends and recalls their response with amazement.

People didn’t know that I was in the special program. They just thought I was a normal person. When I told people, some people made jokes like “Oh, at least I’m not in the special program,” and I would say, “Well, I’m in the special program.”

59 They said, “You’re in the special program? You don’t seem like a person that would be in the special program.”

That her difference was not obvious to her peers was an awakening moment for Nancy.

They saw her as normal and not in the “special program.” She had the experience of being included by her peers and being treated like one of them. Eventually she was confident enough to let them know about her learning problems. They actually offered her help, which she used without hesitation. At the time of our interview she is in a private high school, which has recently begun a program for students with learning disabilities. Nancy now claims that she “loves” school.

Her relationship with her mother is generally positive. Although she uses the help at school freely, she still values being able to ask her mother for help, too. Nancy believes that her mother usually understands the difficulties she has experienced in school. This is evidenced by her mother’s action to move her to another school. Occasionally, her mother makes a slight comment that implies that she does not thoroughly understand the disability. When she asks her mother to explain or read a confusing word, her mother may say, “But it’s easy!” This does leave Nancy with an injured feeling that perhaps her mother sometimes “doesn’t get it.” However, Nancy places these small slips in an overall perspective that her mother doesn’t pressure her or get involved with homework.

Nancy came to appreciate her mother’s decision to move her to the public school, though she recognizes that she didn’t initially feel this way. Nancy was quickly impressed by the help, which she realizes is truly helpful. As a result, she began to actively use the help that is offered. Though a few student participants made comments

60 about the special program shortly after she arrived, they also perceive her as normal. She enjoyed newfound peer acceptance and feels “wonderful.”

Nancy’s picture of herself and her learning difference is changed. She understands herself not as stupid or defective but as I have to study longer. I remember things when I write them down. When I study for a quiz or test, I make my own test. I make my own study guide when the teachers don’t give me one. It just helps me along the way.

The description of her learning disability is not based on a deficit but on the actions she takes to be successful. Nancy has a sense of control over her performance.

A Structural View of “Different/Normal” These three stories exemplify some of the main themes from the student participants who view themselves as “different/normal.” Parents and teachers who act relatively quickly in the child’s life to provide an action oriented path to successful performance transform the child’s understanding of the learning difference. These stories are full of anecdotes about helpful adults. Relationships with these adults are “caring” and add to the student’s motivation. Success is actually the experience of one’s effort producing positive results, “If I am successful, how significant can my difference be?”

Subtle comments, tone of voice, attitudes in the school setting, and responsive adults help all the students craft a picture of their difference as mild in significance and no impediment to success. They develop an understanding of a learning disability that is based on concrete useful strategies for performance. The student participants repeatedly described their learning differences not in terms of a deficit but in terms of how they

61 work to be successful. Use of these strategies with resultant success confirms their ongoing decision to use help.

In the stories of these students, teachers and the overall educational environment are perceived as nonjudgmental, thereby providing an atmosphere of understanding about different ways to learn. For example, in one setting, offering extended time for tests is a standard procedure and is normalized. Peers seem to respond to these norms, which reinforces the sense of normality for all students. The positive, accepting response of peers is a powerful force that helps shape the students’ view of themselves as normal.

Being “treated like normal” does not mean being treated the same as other students but does mean being treated with sensitivity to one’s specific learning needs.

This experience of responsiveness occurs naturally and without fuss. Being treated like normal allows one to perform normally. The experience of responsiveness actually minimizes differences.

Parents who are able to manage their own affective response to their child’s diagnosis assist the child in integrating this aspect of self in a constructive way. The parents of these student participants appear to understand the whole child and to respond appropriately. They make effective educational choices for their child in order to provide their child with opportunities for success. These parents expand the responsive environment and the resulting experience of normalcy.

A special mention should be made of the role of peers. In the school setting, especially during the early years, peers were very sensitive to disapproval evidenced by the teacher. The cumulative effect of a teacher’s disapproval, no matter how subtly

62 expressed, was perceived by student participants as injurious and leading to isolation by peers. The reverse was also true as teachers expressed their approval or recognition of any of the student’s talents.

For the young adolescent, finding one’s place in a peer group is an important developmental task. Differences that were ignored by peers during early years could become a cause for embarrassment in middle school or junior high as the need to be “like” others becomes paramount. What seems to prevent difficulty in finding a peer group for these students is the conviction that they are not different in any significant way, as demonstrated by their ability to perform. For most of the students with the different/normal narrative, this conviction was established in the early grades. Help had been accepted as a successful strategy. Their experience of success in spite of the perceived difference allowed them to develop defensive strategies for dealing with teasing.

For these students, the experience of difference shrinks to “not a big deal.” The learning difference is kept in its place, “a small part.” This is adaptive in that it protects the student participants from the negative affect associated with placing the difference at the center of one’s identity and risking feeling “stupid.” Instead of being organized around the learning disability, which is a deficit, the student becomes organized around a whole host of competencies constructed with peers, parents, and teachers.

There are four defining aspects of a perceived as normal self. These are (a) a positive attitude about using help, (b) a view of the learning disability as a minor component of an overall sense of self as competent, (c) a positive view of the relationship

63 with parents, and (d) a trust that the learning disability will not negatively impact peer relationships.

The first defining aspect of this type of narrative is a positive view of help. The narratives describe a chronological process of understanding the role of help. At first, reactions may vary from a struggle to resist using the strategies to a rapid integration of help. Students who struggle with help are afraid to look different. Tom originally denies needing the extra time for tests and assignments. His struggle is not about the learning disability per se. It is about the strategies that might make him look different. Discovering the impact of the strategies on his performance is pivotal. “I think when you acknowledge that you actually need the extra time, that you have this thing, then you are able to cope with it. Then other people don’t bother you as much.” Each student recognizes her or his ability to choose whether or not to use help. When they use the help, the success that occurs is embedded in a supportive matrix which provides them with action oriented strategies and plans. Their view of help is transformed and is transforming in how they view their difference. As Tom says, “The main thing is figuring out yourself and putting the stuff into practice. Wow! If I didn’t use this I wouldn’t be able to get this stuff done.

The personal realizing part is it. So it works.”

These students appreciate opportunities for small classes with other learning disabled students. They feel increased comfort and less stress in the smaller classroom.

Here it feels safe to acknowledge that at times the pace of the regular classes is too fast.

For these four students, with the “different/normal” narrative, moving to another class is handled sensitively without announcement. They form a strong alliance with the special

64 education teacher, which further facilitates the use of help. They also feel connected to a group of peers who understand the experience of having a learning disability.

The second defining aspect of the “different/normal” narrative is the view of a learning disability as a minor component in an overall sense of competence. The learning disability is not the central focus of their view of themselves. The learning disability is a “small part” of themselves. Each of these students recognize that the help leads to success. The success protects them from the feeling of injury or feeling “stupid.” Instead, these students feel able to meet academic challenges. Once the individually based strategies are accepted, by implication so is the learning disability. Their ambivalence caused by a fear of being different due to using help disappears. Very little psychic energy is needed to protect themselves from feeling injured or “stupid.” They can truly say, “It’s not a big deal.” For this reason these students often insist that they spend little time actually thinking about the learning disability.

The experience of health difficulties for themselves or their family members also affects their understanding of the learning disability. Two of the student participants have had to cope with their own health issues. They feel that these experiences allow them to put their learning differences in a larger perspective. Compared to some of the suffering they experience or witness in their families, a learning disability and the necessary strategies present less of a challenge. Bill believes that all of these challenges are part of a greater purpose. “I could have a learning disability because maybe I’ll meet someone, a kid who has a learning disability, when I’m older. I’ll be able to help them out. I just try

65 to look at it that way.” These students see their learning disability as part of a whole profile of relative strengths and weaknesses, challenges and gifts.

The third aspect of the “different/normal” narrative is the positive view of the relationship with parents. These students describe their parents as attentive, noticing relatively early the difficulties that occur in school and responding with assistance. The assistance is of a type that is concrete, practical, and successful. These students have a sense of emotional security, being understood and supported by parents. They describe their parents’ recognition of their efforts and accomplishments. They also expect that parents will notice and intervene when students fail to use appropriate strategies. Tom explains his relationship with his parents: If I handle things ok, she [his mom] leaves me alone. If I get into trouble then she will get involved. So mostly, I handle it myself. My dad is a person who wants to see you figure it out on your own.

The fourth aspect of the “different/normal” narrative is the perception of peer relationships as not negatively impacted by the learning disability. Peer relationships are a source of confirmation of the normalcy and the relative unimportance of the learning disability. Protective strategies are not necessary as student participants find themselves accepted as belonging in a group of peers. Comments about school or learning differences are not provocative. Friendships are unrestricted and affirming.

The “different/normal” narrative depicts an experience of responsive adults at home and in the school environment. For most students this responsiveness is apparent early in the academic career. One student came to see her mother as responsive due to her mother’s decision to move her to a new school in fourth grade. She now recognizes how this action improved her life. There is a clear shift in her narrative as she describes her

66 newer understanding of her mother’s action and the impact on her own performance, allowing her to feel “different/normal.” For all of these students, the early experience of help which allows them to be successful, along with a supportive matrix of adults and peers, leads to the “different/normal” narrative. Students who develop this narrative have a sense of self that includes both feelings of belonging and of empowerment.

“Different/Not Normal” Eight students demonstrate the “different/not normal” type of narrative. Of the eight student participants, five were diagnosed by age 7, two by age 10, and one only 6 months prior to her interview at age 14. All of these narratives describe degrees of failure and a sense of disappointment over the lack of help. These are painful stories that caused some level of distress during the interview. Participants were always offered the opportunity to stop the interview and the recorder. They were also reminded of the right to cease participation. All of the participants insisted on continuing due to their determination to help other student participants and due to a desire to have their voice heard. “People will realize how it is.”

“I’m Human Aren’t I?” Mary was eager to participate in the study. She hoped that the telling of her story would result in more compassion for other children with learning disabilities. Her story is characterized by injury, shame, secrecy, and a sense of injustice. Mary’s first memory at her private school was her shock and confusion due to her first grade teacher’s constant

67 asking, “Are you done yet?” She noticed that she was not done while others were done with their work. Mary conveyed during the interview the teacher’s expression and her tone of voice as the dreaded question was asked. Mary understood that she had displeased her teacher. Though she tried each day, her teacher continued to be displeased. She did not understand the difference in her performance, why it had happened, or why it was displeasing. Mary is certain that this caused her peers to see her as “stupid.”

Mary responded by doing whatever was necessary to avoid being last, such as hiding papers in her desk or writing anything in large letters to fill the page as fast as possible. Mary reflects, “I thought she was right to pressure me like that.” At that time, she had believed that adults knew better than children and were always right. Therefore, Mary trusted her teacher and the inference regarding the significance of being last. This inference was that Mary is disappointing or a bad student. Mary views this as her failure, since it could not be a failure on the teacher’s part.

In first grade, Mary frequently had stomachaches. She often felt sick before school and went to the office in school to ask to be sent home. At one point one of the office personnel asked, “What is wrong, why are you always coming to the office?” As Mary describes it, “I told her I didn’t feel comfortable at school. She didn’t know what to say. She just said ,‘Oh.’ Then she took me back to class and whispered to my teacher.

They didn’t know what to do with me.” Mary feels let down by the adults in the school, since they were at a loss to help her. “I figured it was me, my fault, but I never told my mom that.” Along with her feelings of failure and injury, Mary experienced shame. She is convinced that her difference was evidence of a serious defect. She sacrificed any attempt

68 at learning in order to avoid being last. She did not want to displease her teacher or feel “stupid” in front of her peers.

Her life was made more difficult by the reaction of her peers. She described being isolated by them on the playground. A boy whom she sees as also isolated by peers became one of her friends. She felt badly for him since he struggled in school even more than she. Mary chose to play with him when no one else would. She is certain that her peers saw her as stupid. She interprets their looks or silence to be about their disapproval of her. “I felt like they were making fun of me and I would deal with it, then come home and think about it and cry. There were some days my mom didn’t make me go to school the next day.” The combination of the teachers’ reaction, the isolation by peers, and Mary’s own growing view of herself as “at fault” led to the use of a number of protective strategies.

She avoided working with partners and stopped asking questions in class. She tried to become invisible. As a result, when she was moved to a public school for second grade where help is provided, Mary tried to avoid using the help, believing that it would only expose her to more injury. This strategy was reinforced when students at her new school noticed her lower level reading book and commented about the “easy” book.

Though in a new school with special education services, Mary felt unjustly excluded by peers. “I’m human just like anyone else. I just have a little reading problem.” Mary was surprised by her anger when she witnessed a boy who also struggled in school being made fun of by a peer. She responded with a physical attack. For a moment Mary felt empowered, but her anger and shock were quickly replaced by guilt. She reported herself

69 to a counselor. Though the counselor acknowledged the misbehavior of the peer and cameras on the bus showed her as somewhat justified, to this day Mary is still horrified by her behavior.

Mary has managed to make a few friends. They noticed how she behaved differently in school. It was part of Mary’s strategy. She would love to be able to be that other person—confident, free of the worry of being exposed or ridiculed. However, the risk was ever present and on her mind in school. Mary described being fun and spontaneous with her friends outside of school.

During one school year, Mary had a positive experience with peers. She claimed this was a class of “nice” kids. She took care of the teacher’s hamsters. “I guess they really knew how responsible I was. I wasn’t stupid and so that’s how I got the kids. I cleaned the hamsters every day.” Mary loved animals and demonstrated that to her peers.

Perhaps while taking care of the animals, Mary forgot her fears. Perhaps her peers were able to see her in a different light and Mary was able to see another side of her peers. This was the only positive experience she described.

Mary’s negative view of herself was reinforced by her relationship with her parents and their reaction to the learning disability. Her grandparents were not told about her learning problems due to the fear it would upset them, since one of her parents had a learning disability. Her parent described a significant degree of punishment and mistreatment over the learning disability. Mary wrestled with using the help her mother offered. At times Mary’s mother did the work for her, feeling sorry for her daughter. This type of help made Mary feel guilty and was proof of her mother’s belief that she couldn’t

70 do the work herself. Mary was afraid to anger her mother by insisting that she try it herself, since she knew that she needed her mother’s help. The possibility that her mother would be angry enough to withdraw her help was a risk Mary could not take.

At other times, Mary was so determined to work by herself that she was overwhelmed and required intervention from her mother to stop and try to recover. Mary and her mother struggled to navigate the difference between effective help and disabling help. Each was anxious for the other and fearful of injuring the other. Mary felt caught in a trap between developing independence and injuring her mother or accepting dependence and protecting the relationship with her mother. At the same time she carried both her own and her parent’s shame over the learning disability.

Mary commented during the interview that she is aware of how differently she relates to her mother compared to her peers. Her peers are beginning to distance themselves from their mothers in typical early adolescent fashion. Mary is still quite dependent on her mother and fears upsetting the person who is her main support. She is often unable to attend overnights since they keep her from home too long.

Mary’s story has many themes common to the “different/not normal” narrative.

The early experience of injury, lack of effective help, and strong feelings of shame, guilt and anger shape the students’ view of themselves. Instead of a supportive environmental matrix, there is a sense that no protection is available. School becomes a dangerous place where exposure to further injury is a daily possibility. Although she is in a school that claims to strongly advocate for students with learning disabilities, Mary continues to feel

71 injured. Though she wants to belong she has determined that her learning disability will prevent this, since her difference from her peers seems so great. She sees no way out.

I would love one day for people to notice that I’m not different. I would love people to notice she’s just a normal girl. She’s smart. I would love not to have a learning disability. One day I would love to not be different and stick out from other people.

A Defective Brain Christine’s story is much like Mary’s except that she attended a public school from the start. Christine was diagnosed in fourth grade and is currently in high school.

Like Mary, in the early grades she had stomachaches and tried to avoid school. “I always knew something was wrong but when I actually heard that it was something with my brain, it kind of shut me off a little bit.” She was unable to absorb and use this information in any kind of coherent way. She perceived that she doesn’t perform as well as her peers. For Christine it seemed there was a wall that she could not pass through.

Though she struggled and tried, the wall held her back. Beyond the wall lay the world of normalcy. Christine was unable to find a way around this impediment. She knew something was wrong with her. She understood the something wrong to be with her brain. Christine had no experience of strategies that would allow her to be successful or to feel “normal.” This is a deficit picture of her learning disability.

Christine felt alone and unprotected at school. “My parents didn’t really know how it was at school so they couldn’t help me there.” She battled with her parents over attending school and was angry that they didn’t really hear her. Christine initially blamed her parents for her learning disability. For a time she was cruel to them, trying to punish

72 them for her difficulties. As she became older, she decided she was wrong to punish them. Christine decided that they were only doing what they thought best. They were not responsible for her difference. Christine recognizes now that her mother worries about her and her school difficulties.

She’s always worried about that sort of stuff. I feel bad, because I’m just putting a lot on her about why I don’t want to go to school and what’s going on. I feel bad that she has to cope with that too.”

She reported the one positive aspect of her life is her relationship with a few good friends. “They don’t really feel like it’s a difference in me, just a part of me.” As in Mary’s story, they commented on her different personality in school versus outside of school with them. Christine was still adamant in her strategy to hide in school. She did not want to be noticed in any way. Christine can admit that she spent a great deal of time worrying about how she appeared in school. She imagined that if she heard laughter, it must be about her. If a student looked at her, she imagined that she had somehow revealed her difference. But with her good friends, Christine was able to talk about her learning problems and even receive help. She felt accepted by this small group.

Christine longs to be “normal”: I consider a normal kid just someone who is doing good in the classroom and understands what they are doing. They are someone who isn’t shy about asking questions, or who feels comfortable in the class. They can be open. Which obviously isn’t me, I’m the girl hiding in the corner. I want to be a different person than that but I can’t. . . . So . . . .”

She has acceptance and safety with her friends. It has to be enough for her since the danger of exposure in school is constantly present. A great deal of energy goes into this strategy of hiding in school.

73 No Excuses Beth is an only child who attended a public school. At age 6 she was identified with a learning disability. She began receiving minimal services but her parents insisted to the school that they not use the term learning disability. Her mother explained her concern that the learning disability would provide her with an excuse for poor performance. Beth is now a freshman in high school. Prior to the interview I explained to parents that the term “learning disability” is on my consent forms. They seem unconcerned. Beth also seems unconcerned about the disclosure. I realize during the interview that use of the term has no relevance to her experience. Beth has no way to frame her story in terms of the difference she experienced all throughout her education.

At this point it is irrelevant to her story. She is concerned with other aspects of her experience.

As in the stories of other students, Beth spent a great deal of energy hiding in school. She resented the student participants who seemed unconcerned and got good grades. In school she was consumed by worries about what the others are thinking. They must think her stupid, but she tried telling herself not to believe it. Her avoidance of help meant that she had little experience of understanding how she could predictably achieve success. Her grades are adequate, even in her area of difficulty, but she has no particular strategies that she understands as helpful to her. She has few stories about her teachers, mainly since she has as little interaction with them as possible. She only wishes for teachers to have lots of “patience.”

74 Her relationship with her parents is characterized by a conflicting blend of emotions. She desires their help but becomes overwhelmed by the demands for more study and practice by a parent. Her requests to stop working go ignored until she breaks down and cries. She feels not heard. Her remarks about difficulty and fatigue are minimized. Beth is exhausted by her efforts to hide in school and the demands to work harder at home. Her interview is tearful as she relates her experiences.

Her parents’ strategy results in a confused and defective view of herself. They add their anxiety over her performance to her anxiety over seeing herself as stupid. She fears that she is in fact stupid, not normal, not like other students. As a result she hides, fearful of discovery in the school. School becomes a place of fear and tension. She cannot even talk about these feelings because her parents have unwittingly denied her the right to feel tired, frustrated, or overwhelmed. She cannot gauge what is real or imagined. She cannot trust her own judgment. Beth dreams of some day being free of school, free of the stress and tension she feels each day.

What’s Happening Here?

Some students cannot even articulate their early impressions beyond acknowledging that they were very confused. Sarah explains, I didn’t know what was going on. We were going to go and talk and I didn’t understand why or anything. My parents moved me to public school. Then I guess you could say I never really understood why I was going to speech or why I went to a public school in the first place until maybe seventh grade.

This is the experience of being treated differently. It is unlike the other examples of students who recognize something in their performance that seemed different. Sarah

75 recognizes that she received different treatment but doesn’t understand why the difference. She thinks that at the time she “felt like normal.” If she feels like normal then it is confusing to be treated differently. She has stomachaches and often feels ill before school. The affect is not verbally expressed but expresses itself in the body. It is a disharmony that cannot be reconciled. Sarah at an early age could not seem to develop a coherent explanation for the different treatment. She finally concludes, “Something is wrong with me.” The something is vague and unexplained.

Can Help Come Too Late?

Finally, Cathy’s story is unusual for the lateness of her diagnosis of a learning disability. Cathy was identified with a reading disability in eighth grade. Her story is like the others in terms of hiding. In addition, she spent years in the dark in terms of any understanding of her lack of success. As a result, she decided to just “let school go” from her mind. Cathy cannot find a way to be successful. She had years of trying in school with minimal results. She was told to pay more attention. For a while having no other explanation for her lack of success, she blamed herself. Finally, Cathy decided on the strategy of not caring about school at all. It was the best way to feel better and eliminate the struggle. She knew what it’s like to feel stupid, “it’s like a pain in your heart.” She stopped trying in school and was concerned only about not feeling stupid anymore.

Occasionally in school she would remove herself mentally by daydreaming. Cathy was determined in her effort not to think about school at all once she left for the day. It wreaked havoc with homework and occasionally her mother applied consequences that

76 motivated her for a time. Her mother is the only person she trusts to help her when necessary. Cathy tries not to complain but every now and then she explodes at home for reasons she cannot explain.

When we met for the interview, Cathy was 2 months into the fall term of freshman year at her high school. This particular private high school has made a determined effort to reach out and help student participants with learning disabilities.

Cathy has for the first time begun to be successful. She is given extra time, books on tape, and an explanation of the accommodations available to her. Cathy is adamant in her insistence that she prefers to ask only her mother for help. She does not trust the newfound success and in fact does not attribute it to anything she has done. She is clear that she doesn’t believe the improved grades and expects they will not last.

Like Beth, Cathy has spent several years in confusion, not understanding what was interfering with her performance. Although her parents were supportive and recognized her early efforts, she had no guidance in how to apply herself in a successful way. She developed a view of herself as defective. Cathy and her parents knew only to keep trying, studying harder, and trying again. Using the strategy of not caring, not thinking about school, provided her some brief relief from the negative affect and constant strain.

Cathy is making new friends and having new successes. She reports few instances of being teased by peers, somewhat the result of the strategy of isolation. Cathy has a set of friends with whom school is never discussed. One wonders if she will be able to believe the successes and begin to make more use of the help that is available. Perhaps

77 that is a possibility since, when I asked what she would tell a young person with a learning disability, she responded, “Tell them it gets better.”

A Structural View of “Different/Not Normal” These students have determined their difference to be significant in a way that qualifies as “not normal.” The experience of being let down by adults is a consistent theme in these narratives. Some parents are described as falling into this category, but students seem unwilling to explicitly acknowledge their disappointment. In part this is due to their valuing the parents’ role as providing safety.

These student participants are often sad, angry, and silent. They described an accumulation of injury and shame that feels inescapable. For these students the ongoing injury is unavoidable. Some experience degrees of confusion, anxiety, and hopelessness.

In school they constantly feel they do not measure up to expectations of themselves, peers, and important adults. Many of these students develop an understanding of themselves based on inaccurate information. They form their own conclusions regarding: being stupid, the inability of adults to help them, and their own inability to live up to expectations. They begin to engage in strategies to protect themselves from the awful feeling of being stupid, not normal, and defective. These strategies provide a selfdefeating cycle of further failure.

Several consequences develop in varying sequence and severity in response to the perception of self as “different/not normal.” First, the student becomes organized around the principle of self-protection and avoiding injury. Second, the use of help is viewed as a

78 dangerous opportunity for exposure and further injury. Third, relationships with parents are made problematical by the students’ conflicting desires for independence and the ongoing need for academic help and management of emotional distress. Fourth, relationships with peers are restricted in anticipation of further injury.

The first consequence of the “different/not normal” narrative is the organization of the student around the principle of self-protection. The most common strategy was the use of hiding. This means that the student acts not to be seen or heard in school. Being seen or heard means exposing one’s defect and risking further injury. The injury is to be seen as stupid. Though some students experience actual taunting and teasing, other students are anxious due the constant anticipation of peer disapproval.

Spending extraordinary amounts of time anticipating further injury in school and planning how to avoid it, is triggered by a variety of factors. The experience of particular subjects that are difficult, teachers who seem impatient or otherwise intolerant, peers who are known to laugh or “cut you down,” all heighten the sense of danger. For some students, the levels of fear and anxiety result in physical symptoms of distress, such as headaches or stomach aches.

As a component of hiding, they are determined in their efforts to prevent school personnel from perceiving their distress. To show distress at school violates the purpose of hiding, risking exposure. Home becomes the place of safety and elicits a developmentally younger attitude toward being at home, being with parents. This is in spite of pressure that parents might apply regarding homework. At least at home, students can be themselves. Parents and a few good friends are the only ones allowed to see the

79 real person. They are generally quiet at school but allow themselves occasional explosions at home when the level of stress becomes intolerable.

Part of the process of hiding is the management of two different personalities.

They are quite conscious of this process. The child outside of school is much freer, louder, and funnier. Friends often comment on the difference. It is both heartening and disheartening when friends express their enjoyment of the out-of-school personality. It feels affirming, yet the picture of the in-school personality is not nearly so positive. It is like going undercover as a less than desirable character.

Another protective strategy is “faking it.” This is to pretend to know what one doesn’t know. It is done only due to extreme necessity, such as when called upon to speak or read in class. Speaking quickly is a way to prevent others from registering and commenting upon any errors. If one is asked to read in class, inventing words or pretending to know the story is the best way to distract anyone from noticing. Noticing is the key word. None of these students believe that faking convinces anyone in class that they are correct. The only goal is to move quickly enough, to overwhelm all with speed so that there is no time for anyone to focus on the errors.

In addition to “hiding,” a few students use the strategy of not thinking or caring about school. Believing that they cannot succeed, they cease trying. In school they daydream or think of fun activities for after school. Outside of school, it ceases to exist.

They keep busy with sports or other activities with friends. It provides the benefit of a significant reduction in anxiety. They claim to get angry if school intrudes upon their precious “free time.” This is the time they use to recover from the strain of school.

80 The second consequence of the “different/not normal” narrative is the avoidance of help. Help is seen as another opportunity for exposure and injury. These students will not raise their hand in class nor ask questions. Some students might consider seeing a teacher after class, but their perception of the slightest hint of disapproval or impatience in the teacher would terminate such an attempt. They avoid using additional time or even reporting any difficulty. Help in the school setting is perceived as not helpful and too risky. Teachers who ask in a public way if the student wants help in the classroom setting are seen as shaming and therefore are to be avoided. These students rely on parents or family members to provide help in the privacy of home.

The third consequence of the “different/not normal” narrative is the restriction of peer relationships due to protective maneuvers. A great deal of time in and out of school is spent anticipating and planning how to avoid further injury from peers. There is a range of mild to extreme in the degree to which students are occupied by the fear of exposure.

Many of these students assume a negative intent in the behaviors of peers. A look, a gesture, or a laugh is interpreted to be a negative observation about the student with a learning disability. It is normal for adolescents to see themselves as performers at center stage. But for these students, it is as if some horrible visible defect is apparent to the entire audience. They imagine not only the reaction of the audience to the exposed defect but also their own shame and embarrassment. They limit their interactions with peers to those perceived as safe.

Safe students are those who would never see the learning disability as “not normal” or act as if it were of any consequence. Safe peers are those who would never

81 ridicule; they are seen as compassionate individuals. The students with the different/not normal narrative take their time, first “listening” to peers before deciding if they might be safe. One student developed the strategy of finding a student in each class who seemed “safe.” She terms them “bodyguards” and sits next to them in each class. This makes her feel somewhat safe but limits her interactions with other peers in the class.

Some of these students did experience actual teasing about their spelling, grades, performance, or overall intelligence. Anecdotes about teasing also abound with how adults failed to intervene. These students fear that what is said about them is true, which makes the teasing so very painful. They have no way of understanding themselves and their performance that would provide some protections against the accusations and the teasing. The negative comments of peers confirm the sense that they are not normal because they are not perceived as normal by peers. It also further reinforces the strategy of hiding. One student asks if I would advise “the other kids to leave us alone.”

The fourth consequence of the “different/not normal” narrative is the formation of problematic relationships with parents due to conflicting needs for independence versus needs for help and protection. Looking to one’s parents for academic help can be a trying process. Parents vary in their understanding of the material and may have their own anxieties about the student’s performance. Being effective at this type of “helping” requires not only a thorough understanding of the child’s specific learning disability but also the ability to read and respond to the level of frustration evidenced. These students often battle with parents over the length of time spent on homework, the quality of the work, or requirements that they use tutors.

82 Regardless of schoolwork battles, parents are usually seen as “safe.” This means that parents and the home environment are a refuge from the risk of exposure and stress at school. The student can drop protective strategies such as “hiding” and freely express distress. Some parents respond to this distress with decreased expectations in terms of grades. However, even this function is sometimes diminished by the student’s perception of the parents’ anxieties and their capacity to tolerate the student’s distress. A student may experience guilt over distressing the parent. Other students in this group had to cope with their parents’ demand for the students’ success via working harder and longer, while also needing emotional support. Anger is not always freely expressed due to fears that the parent could refuse to provide needed help. This produces a developmentally younger pattern of parent-child relating in these adolescents who still had an intense need for protection and safety.

Finally, these student participants are anxious about the future. For some there is anxiety about the prospect of what seems like an eternity dealing with the strain of school. Others have hopes or dreams but fear that their learning disability will simply make accomplishment of those dreams impossible. Some students are fearful of the prospect of someday leaving their parents’ homes. A few students simply shut down the process of thinking about the future as being too overwhelming.

The development of the “different/not normal” narrative reflects a sense of self as abnormal, inadequate, and defective. The narratives tell the story of cumulative experiences of injury and shame along with experiences of the lack of effective help.

Students’ view of self affects their view of the future, their relationships with significant

83 others, and their faith in these relationships to be noninjurious. As result, a number of protective strategies are used to protect the self that are actually self-defeating. These students interpret the failure of effective help to be their own failure and cease expecting help from significant others. They have been unable to construct a self-narrative that provides a sense of self as competent and normal.

Two researcher assumptions were refuted by the data. First, it is notable that in all of these narratives, the experience of feeling different is the essential experience of the learning disability. I had assumed that the process of being tested and identified as having a learning disability would have a significant psychological impact and was a critical part of the experience. In fact, these students report vague memories of testing. A few have specific memories of an adult telling them about the disability, but they do not seem to retain much understanding of what was told to them. Some have no memory at all of being told about the learning disability or the area of disability. It is unclear whether this is due to the failure of adults to provide an adequate and developmentally appropriate explanation or the defensive reaction due to an injury to the sense of self. Their perception of the learning disability was created around the experience of being different and the responses of others to this difference. This experience of difference is not at all related to any labeling as qualifying for special education via there learning disability.

Second, I had assumed that only those students with language based learning disabilities would be suitable for this study due to relatively better nonverbal skills in sequencing, cause and effect, concept formation, and emotional processing. Students whose diagnosis placed them on the autistic spectrum were not included due to relative

84 impairments in social interaction and communication. I was, however, forced to accept students with a wide range of disabilities in order to complete the study at all. As discussed earlier, these students represent a vulnerable population for whom discussion of their disability flew in the face of such coping strategies as “It’s no big deal” or “hiding.”

The experience of being different was the essential experience regardless of the type of disability.

Gender Differences As discussed in Chapter III, this methodology had the limitation of drawing more female than male participants. This is no accident and reflects different coping strategies preferred by each gender. Girls not only found the interview process to be cathartic but also described having a “better understanding.” For the female students, just “being asked” to speak about their experience generated positive affect. This seemed to outweigh the negative affect they reexperienced in telling their stories. As a result, girls seemed more personally motivated to have others understand their experience and to improve the lives of other students with learning disabilities.

Boys reported participating in the study due to encouragement from their mother or a valued teacher. They were unanimous in their description of their usual preference of not talking about their learning disabilities. They chose to speak out in a desire to recognize those who helped them and to provide advice to other younger students with learning disabilities.

85 During the interviews, girls wept as they discussed events that distressed them.

They responded positively to an empathic reaction from the interviewer. Being in relation with the interviewer facilitated the cathartic process and eventual feeling of benefit. Girls were also very concerned as to how their mothers would be impacted if they ever heard the interview. They wished to protect their mothers and the relationship they shared.

They felt guilt over the amount of distress they had already caused by virtue of their learning differences. Boys, contrary to the girls, merely changed the subject when encountering some distress during the interview. If questioned, they would admit, “It’s a little difficult.” They were focused on the goal of explaining how it was for them and how others could be helped.

In terms of coping strategies, both boys and girls with the different/not normal narrative saw home as a safe haven and preferred not to have school intrude there, in terms of tutoring and homework demands. Both boys and girls used common strategies outside of school. They didn’t think about school and pursued “fun,” usually with a few close friends or used television shows or video games. However, they cope differently in the school setting. Girls use the strategies of hiding and experience somatization as a reaction to the fear of exposure with its injury to the self. At times, both boys and girls consciously used daydreaming to “get away from school.” Boys tended to use denial and avoidance as major coping strategies. The small number of boys who participated provided a limited picture of different coping styles, which has implications for further research.

86 Summary These students constructed self-narratives based on their experience in relationships with significant adults and peers, at home and in the educational setting.

Initially, significant adults contributed to all students’ interpretation of their experience of the learning disability in a way that either shamed or built a sense of competence. Peers contributed to the interpretation and became powerful confirmers of normalcy or exclusion. These narratives demonstrate that the provision of effective help, resulting in successful performance, is the key factor in allowing students to construct a sense of self as normal. Thus, these students spend less time in their early academic strivings trying to manage experiences of injury and shame. The students who receive negative messages about their difference, with no clear path to successful performance, develop a sense of the self as “not normal.� As a result, protective strategies are needed to prevent further injury to the self. These protective strategies interfere with selfobject functions and the formation of a cohesive self, derail age appropriate developmental tasks, reinforce the sense of self as defective, and generate painful levels of anxiety and distress.

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CHAPTER V

THEORETICAL DISCUSSION

Introduction This study aimed to give voice to students who have a learning disability and to answer several questions posed by the researcher. How do students integrate the experience of having a learning disability? Are there practices that are particularly harmful or helpful? How are ambitions and ideals impacted by the experience of a learning disability? Are there aspects of this experience that may contribute to psychopathology? Each student participant’s lived experience was explored during individual interviews. Rich narrative data were created and the analysis of these data provides a new perspective and answers to these questions.

Viewed from the perspective of self psychology, this discussion begins with my empathic experience of the students during our interviews and a review of the concepts central to the theory of self psychology. Next will be a brief summary of the self psychological view of development in general, followed by specific application to development for the child with learning disabilities. As with the findings, the rest of this discussion will move from the perspective of the students with a “different/normal” narrative to the perspective of the “different/not normal” narratives.

88 The interview experience with students perceived as “different/normal” was entirely unlike the interview with students perceived as “different/not normal.” In the first instance, the interviews were uplifting for both student and interviewer. Students took pride in describing their successes and were eager to share their views of how their understanding changed over time. Theirs were stories of accomplishment. In the latter cases, interviews were painful for both the student participants and the researcher. Levels of distress were carefully managed in a joint fashion. At times I felt as if the process inflicted additional injury and felt drawn to offering protection and help to the student.

When requested by the student, advice was given in a careful general fashion as discussed in consultation with my dissertation chairperson. These students had a strong desire to help other students like themselves. It was as if their distress would not be in vain if others benefited from their experience.

Two concepts important to the theoretical discussion are self-narrative and empathy. A self-narrative is described for the purpose of this study as “the broad set of communications through which children tell us about themselves that reflect the organization of their experiences” (Palombo, 2001, p. 43). The student narratives capture the child’s sense of self at that moment in time along with meanings accrued from the relationships with others in the environment. Students’ behavior during the interviews and my empathic experience were part of the data used for analysis. Empathy is a key concept in this study, given the chosen theoretical perspective. For Kohut, the founder of self psychology, empathy is (a) a way to understand the other, (b) a powerful psychological bond, and (c) an essential psychosocial nutrient (Palombo, 2004). Empathy

89 is defined as “vicarious introspection” which is used to “come to some conclusions about what another person’s experience is likely to be” (Wolf, 1988, p. 33). As further described by Palombo (2004), empathy is also a form of nonverbal communication that allows one to interpret the emotional state of another. Empathy not only provides a process for data collection, it also provides a “self-sustaining experience” for the individual (Wolf, p. 34). This explains the reaction of many participants who reported positive feelings after talking about their experience. In fact, parents of some participants chose to participate in the study due to the positive reactions of other participants.

Self Psychology and Development In self psychology normal development involves the child’s striving to cultivate a cohesive sense of self in concert with essential others (Galatzer-Levy & Cohler, 1993).

Using an empathic stance, Kohut came to understand that certain caregiving experiences are required to develop a cohesive sense of self. Cohesion is a subjective experience of a feeling of wholeness or intactness that results when narcissistic needs are met. Kohut (1991) termed these needs selfobject needs and eventually selfobject functions. It is the provision of adequate selfobject functions from the caregiver that allows the development and regulation of a positive sense of self. Kohut identified three selfobject needs: (a) mirroring, which provides acknowledgment and affirmation; (b) idealizing, which provides protection, security, and safety; and (c) twinship, formerly termed alter ego, which provides the experience of essential likeness (Fosshage, 1995).

90 The adequate provision of selfobject functions results in “transmuting internalization,” which allows the child to eventually perform these functions for himself or herself (Palombo, 2004, p. 75). Adequate mirroring results in the child’s feeling worthwhile and capable, leading to the formation of ambitions. Adequate idealizing functions provide the child with the experience of protection and security. The child shares in the strength of the adult while being modulated in affect and action by the adult.

This leads to the child’s internal development of self-control and self-discipline and provides the foundation for the formation of ideals and values. Finally, the adequate provision of twinship experiences results in the child’s feeling “like” others, being part of a family, belonging to a peer group, belonging to a community, and ultimately being a member of the human race. It is the reasonable level of responsiveness of important others in the child’s milieu that serves to develop an intact and whole sense of self.

Though as adults these functions are internalized, we continue to need a degree of responsive others throughout the life course (Fosshage, 1995; Galatzer-Levy & Cohler, 1993).

Another set of functions, termed “adjunctive,” can act to complement the self while not qualifying as actual selfobject functions. Adjunctive functions may entail the parent’s providing certain cognitive supports for an area of deficit, such as memory, auditory processing, nonverbal skills, etc. Especially relevant in terms of the student narratives is the provision of “contrivances or prostheses that extend people’s capacities to perform tasks” (Palombo, 2001, p. 37). In the narratives of these students, the provision of help defined by them as “learning ways that I can be successful in school,”

91 occupies a crucial position in their understanding of their difference and development of a cohesive sense of self. These “contrivances” included books on tape, extended time for assignments and tests, study strategies specific to their learning difference, and other performance supports.

It is a major finding of this study that for students with learning disabilities, the adjunctive function of help and the timing of its delivery either supports or impedes the student’s ability to receive selfobject functions. The narratives of these students demonstrate that early provision or lack of effective help leads students to formulate a normal or defective sense of self. The different/normal or different/not normal sense of self has a significant impact on all phases of development.

Students whose stories were filled with tales of effective helping developed a narrative termed here as “different/normal.” These narratives demonstrate a relative contentment and optimism having achieved a sense of competence, characterized by a lack of anxiety about exposure or performance at school. They are able to receive selfobject functions from significant others and experience self-cohesion (Palombo, 2004). The students who described failures of adults to provide effective help and to understand their pain developed a narrative termed here as “different/not normal.” These narratives were characterized by varying degrees of shame, injury, disappointment, hopelessness, anxiety, and defensiveness. It is as if having failed to achieve a sense of competence, they close the door on receiving selfobject functions, focusing instead on protection, with tremendous ramifications for development, limiting the experience of self-cohesion.

92 I had assumed that the diagnosis of a learning disability would be an early and significant aspect of the student’s experience. I was mistaken; it was the experience of difference in performance, how one is treated or how one is seen by others that was significant for each of these students. Noticing that one doesn’t read like other children, or takes more time to complete work, or receives poor grades, was at first confusing for these students. They looked to parents and teachers to help them understand the significance of their difference. How their parents and teachers responded provided an initial interpretation of their “difference.”

Self Psychology and the “Different/Normal” Narrative Effective Helping and Selfobject Functions Success promoting help is the critical component that facilitates selfobject functions for these students. To be taught a clear action oriented path to success acts to minimize the feeling of difference for the student with a learning disability. Parents who work with the school to obtain the appropriate help and teachers who provide specific steps to success serve as examples of strength and competence, while demonstrating that the learning difference is manageable. By its very nature, this experience not only allows for the development of a different/normal self but also facilitates idealizing selfobject functions. This is the experience of protection, reassurance, and strength (Palombo, 2004). The student participants identified with the competence and confidence of these adults. In this way, idealizing selfobject needs were met and students were able to internalize these same traits. This resulted in strengthening their sense of competence and

93 in further experiences of success. When asked about their learning disability, these students would describe the strategies they used for success. It was a perspective of “here’s what I do” versus “here’s what’s wrong with me.”

Consider the selfobject function of mirroring. This is the experience of being “affirmed and acknowledged by another who mirrors ones internal state” (Palombo, 2004, p. 73). These students who experience being different yet develop a sense of self as different/normal, describe their parents as understanding of their experience. The experience is not denied or ignored but responded to by the parent in a realistic and supportive way. These students see their parents as responding to their frustration in a way that gets them the “help” they need to be successful. As a result they are able to accept parents’ comments about their skills that are admiring and affirming. This parent does not anxiously focus on the difference in performance but continues to praise the child for real accomplishments in many areas. The child has the sense of being known, loved, and admired in a way that he or she can take in.

It appears in the narratives that affect is well managed around frustration, with little parental anxiety registered by the students. Mirroring selfobject functions were apparent not only in brief contacts with parents but also in the students’ certainty of their parents’ approval and pride. In these student narratives, effective help results in the narrative type of different/normal and opens the door to the experience of adequate selfobject functions.

94 Normal as a Function of Twinship For these students, the sense of self as different/normal due to the experience of success contributes to the child’s sense of belonging and minimizes his or her experience of being different. This allows the student to experience twinship functions. They feel themselves to be like others, able to share with them, not set apart, and entitled to membership in the larger group. Students with the different/normal narratives describe receiving normalizing responses from adults and peers. Although these students receive verbal and nonverbal responses from adults and peers that indicate their differences are insignificant, they also seem better able to withstand comments to the contrary. It is their sense of competence that allows them to disregard a degree of negative comments. These narratives describe a responsive milieu that intervenes early to provide help and that in turn nurtures the child’s developing sense of self. As a result, the child is able to develop a cohesive sense of self with a subjective feeling of intactness, wholeness, and competence (Palombo, 2004).

During adolescence the student de-idealizes the parent in response to the need for autonomy. Finding a peer group is one of the tasks of adolescence (Eldridge, 1991). This provides the student with further gratification of the selfobject needs of mirroring, idealizing, and especially twinship, the feeling of “essential likeness and sharing” (Fosshage, 1995, p. 238). For the student with the early experience of prompt and effective help that results in a cohesive sense of self, there is an optimistic expectation of acceptance by peers. This allows the student to shift focus from relationships with parents as the main source of selfobject functions to relationships with peers as an important

95 additional source of selfobject functions. The student now experiences more autonomy, which further enhances the student’s growing sense of self as competent.

A Self that is Whole The organization of self as “different/normal” includes a positive view of the world with hopeful expectations for the future. Students develop a sense of self as competent, with the learning disability as a small component in the whole picture. The use of successful learning strategies permits the integration of the learning disability as a small element in an overall picture of competence. As a consequence, one could say the learning disability is “accepted” in using the strategies for success. The self is not in conflict with contradictory meanings from parents, teachers, or peers. The student is not defending the self via protective maneuvers. Early attempts at disavowal of the difference disappear as the student develops a sense of self that is whole and competent.

Self Psychology and the “Different/Not Normal” Narrative The Lack of Help and Selfobject Functions The “different/not normal” narratives seem to mourn the lack of effective help or the loss of an expectation that help will arrive. Theirs is the experience of varying degrees of academic failure based not only on their own perceptions but also on the response of teachers, parents, and peers. They do not have the experience of success or a grasp of strategies that would allow them to be successful. As a result they contrive their own explanations for their failure and find themselves responsible and defective. This finding

96 of the self as different/not normal impedes selfobject functions with considerable developmental consequences.

These students do not feel understood by teachers and some of their parents. They describe feeling abandoned to the treacherous environment of school. Mirroring fails as they describe feeling that their parents did not hear them or understand how difficult schoolwork was for them. Parents’ insistence that students continue working even when emotionally overwhelmed, frustrates the need to be understood and acknowledged. These students feel that they have disappointed their parents. Some students’ perceive themselves as unable to elicit praise from their parents and are doubly disappointed.

Other students hear such comments from their parents as “You are really smart; if you just work hard you can do anything.” This type of comment, although meant to be affirming, is experienced as further confirmation of their failure. These students feel that they have failed their parents and therefore cannot receive mirroring, no matter how well intentioned.

Idealizing selfobject needs are also frustrated by the lack of effective help.

Although some of these parents felt early on that something was wrong at school, they were not successful in obtaining appropriate help for their children, resulting in a delay in identification of the learning disability and the provision of help. Both parent and child struggle with the question of “What is wrong?” As parent and child struggle together to perform homework, neither is clear about effective strategies that can lead to success.

Both become involved in grueling efforts to get through homework, resulting in

97 overwhelming affect and no clear expectation of success. The parent has not been able to help the child manage the challenge with the assurance of success.

Some students experience a parent’s insistence to continue working on academics at home, beyond the point of tolerable frustration. This may imply a degree of parental narcissistic injury. For these parents, the sense of the child’s having failed them is communicated to the child via action and affect. Some parents may be unable to manage their own sense of injury and attempt to repair the injury by urging greater effort and performance. The damage to the student occurs when the attempt to bring about student success is carried out in an unempathic way. The student’s own affect is ignored and even denied as the parent insists on specific behavior. The sense of not being heard or understood in conjunction with the sense of failure is a serious rupture of selfobject functions.

Ineffective Help In other cases, the provision of something called help is not truly helpful. Some students are informed they are to receive help, only to find that what they are given does not lead to success or even have any positive impact on performance at school. When this requires going to another school or receiving after-school tutoring, the experience of a stigmatizing difference is reinforced. Parent and child suffer with a degree of helplessness, again resulting in a failure of idealizing selfobject functions. The disappointment of these students who are told they will be helped but then do not experience success, is keen. They cannot merge and identify with a powerful competent

98 protector nor could they internalize strategies or rules for success. They become convinced that their difference is unmanageable by any adult and therefore is a serious deficit.

These students are injured by comments from teachers that indicate displeasure, frustration, and impatience. The student experiences this as an injury to the self, described as “feeling stupid.” To “feel stupid” is to sustain an assault on the self as a physical pain. Instead of being acknowledged with pleasure and pride by teachers, there is only disappointment expressed by the adult and the student’s sense of failure. These events are not transformed by the teacher’s use of effective strategies to support the student’s performance. The students experience these teachers as not knowing how or not being able to provide help. This is a shocking and devastating perception, that their learning difference is such that no adult knows how to help. Again and again, there is the frustration of the need to be protected by a strong and competent adult. The students do not feel empowered and do not have the experience of regulation through the capacity of the adult. There is no opportunity to feel soothed or to receive support. Although the teacher fails them, making it impossible for the students to internalize qualities of strength and competence, the students interpret the failure as theirs. Left to formulate an explanation for this experience of failure and disappointment, they view themselves as “not normal.” As objective observers we would dispute the accuracy of the interpretation, but the story makes sense to the students, given their experience.

99 The Loss of Normal, Failure of Twinship, and Search for Safety The above experiences result in the interpretation of their difference as so significant as to result in a profound failure of the selfobject function of twinship. These students feel their difference prevents their membership in the peer group and, for some, the entire community. One of these students felt so excluded as to feel the need to assert her membership in the human race. To suffer the loss of belonging, sharing, and feeling like others is a terrible blow. Instead of providing a sense of belonging, peer relationships are seen as potential sources of further injury. In adolescence, these students’ fears of more injury from peer relationships interfere with the developmental task of finding a peer group. Their behavior becomes a reinforcing experience of difference. Not only do they feel themselves to be very different, they act differently in fearing injury from peers, creating a self-fulfilling prophecy.

The shift to a focus on peer relationships and increased autonomy from parents is limited, as students choose to be their true selves only with parents. Vigilance regarding exposure of their learning differences is finally dropped in relative safety with parents.

Even when selfobject needs are frustrated by these same parents, the parents’ role in providing a respite zone takes precedence and must be preserved at all costs. This means that typical conflictual contests for autonomy and independence are constrained in order to preserve the place of respite. These students fear that making a parent angry would result in the loss of hidden assistance and destruction of the place of respite.

A few of these students develop friendships around athletic activities that are perceived as their strength. However, students are clear that avoiding any discussion of

100 school is a key requirement of any relationship. In these instances the gratification of twinship needs is marginal. The student does not consider the whole self to be accepted; rather the athletic self is what can be accepted. The students believe that their poor school performance needs to be hidden in order to be fully accepted by this peer group. Thus the sense of acceptance is partial; the sense of self, partitioned.

For the student who develops a sense of self as defective, not normal, the developmental transition to selfobject functions of peers is impeded. There is difficulty navigating the task of all adolescents in finding a peer group. Autonomy from parents is complicated by the ongoing need for their help with schoolwork, the need to use the home as a safe haven, and the expectation that but for few exceptions, peers will perpetrate ongoing injury to the self. The protective strategy of hiding in school in anticipation of being shamed or humiliated, results in a degree of social isolation. Safety becomes the paramount concern over autonomy and building peer relationships. Often the few safe peer relationships are built around one aspect of the self, hiding or disavowing the school experience.

Trauma The repetition of injury and frustration of selfobject needs has a cumulative effect on the student as in Type II trauma. Terr (1992) describes Type II trauma as the result of repeated or longstanding ordeals. Trauma renders the child “temporarily helpless and breaks past ordinary coping and defensive mechanisms� (p. 168). Terr adds the concept of prolonged or sickening anticipation as a component of this type of trauma. She

101 describes four key characteristics of traumatized children: “(a) strongly visualized or otherwise repeatedly perceived memories, (b) repetitive behaviors, (c) trauma-specific fears, and (d) changed attitudes about people, aspects of life, and the future” (p. 168).

Many of the narratives of students who see themselves as different/not normal demonstrate attitudes and patterns of behavior consistent with Type II trauma. These students have vivid memories of injuries throughout their school experience. They become organized around strategies of self-protection by refusing to use help, hiding in school, faking it in school, and isolating themselves socially in school. A great deal of mental energy goes into anticipating further injuries to the self at school. This creates such mental and emotional strain that some students develop the physical symptoms of stress, such as stomachaches and headaches. These students do not expect that teachers will be helpful, that peers will be accepting, or that they will be successful in the future.

They wish for release from what they see as a never-ending struggle in the academic and, for some, the social environment. For Kohut (1991) the experience of being cut off from responsive selfobject functions defines the experience as traumatic. The individual is then exposed to the overwhelming affect associated with the failure.

Shaley (2007), although not speaking to Type II trauma, raises the question of when stress becomes traumatic stress, viewing stress as traumatic when psychological damage equivalent to severe physical damage occurs. Shaley gives several examples of this type of psychological damage, some of which are “damage to the self, to one’s cognitive assumptions, to one’s affect, to neuronal mechanisms governing habituation and learning, or to one’s emotional learning pathways” (p. 93).

102 The Loss of Self-Cohesion As indicated in the narratives termed “different/not normal” the response to the absence of the adjunctive function of effective help results in a view of the self as defective and not competent. It also results in a view of the environment as unresponsive.

The combination of an unresponsive environment and a defective view of self greatly diminishes further opportunities for mirroring, idealizing and twinship. The failure of selfobject functions combined with ongoing injury to the self interrupts the development of a cohesive self. Their assumptions about themselves and expectations for further injury lead to a self organized around the need for protection. This creates a cycle of selfdefeating strategies that denies them the sense of intactness, wholeness, and vigor. The lack of self-cohesion creates feelings of anxiety, shame, anger, and hopelessness.

Though this study did not involve attempts to evaluate the presence of psychopathology, there is evidence in the narratives of these students in the “different/not normal” group showing derailment in the development of a cohesive self. This developmental derailment speaks to a lack of internalized self structure due to inadequate selfobject functions, which leads to the experience of overwhelming negative affect. This creates a negative cycle as the lack of self structure means they lack the capacity to manage the affect, resulting in more failure. The self has been injured and this injury impedes adaptive responses, creating more injury. This is a picture of the fragile, noncohesive self. These students are more vulnerable to further injury than their “different/normal” counterpart. Without the building of a cohesive sense of self with

103 internalized regulating functions and ideals, they may be more prone to emotional and behavioral issues.

Conclusions Development is propelled by the ample provision of selfobject functions and the “search for an experienced integrity of the self” (Galatzer-Levy & Cohler, 1993, p. 342).

Effective help, though viewed as an “adjunctive function,” has the power to facilitate or impede selfobject functions due to the impact on the sense of self. This adjunctive function is a critical component of a responsive environment for any student with a learning disability. With effective help, the student experiences the self as competent and integrates the beneficial strategies. Effective help leads to resilience, allowing the student to continue to use selfobject functions of adults and peers, maintaining development of a cohesive self.

Without this adjunctive function, there is a discontinuous experience of the self that causes a developmental derailment due to impeded selfobject functions and a focus on the protection of the endangered self. Without such provision, the lack of a responsive milieu and the presence of multiple injuries to the sense of self result in the creation of a fragile self, a self that lacks cohesion and has an underdeveloped internal structure. These children experience high levels of stress, as evidenced by anxiety, sadness, and an expectation of ongoing injury to the self.

Parents, teachers, professionals, and institutional practices that act to promptly provide effective help for students with learning disabilities, allow the students to

104 understand the experience of “different� in a way that maintains integrity of the self and supports development. Action focused strategies for academic success and the overall ample provision of selfobject functions in relationship with significant others results in a cohesive self. The voices of these student participants provide us with an understanding of their experience that suggests a number of clinical, policy, and research implications, which will be discussed in the next chapter.

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CHAPTER VI

IMPLICATIONS FOR SOCIAL WORK

Overview The aim of this study was to discover the lived experience of young adolescents with a learning disability and to answer several research questions. The narratives of these students captured a moment in time as they described their experience and their sense of self. Their sense of self was based not only on ongoing selfobject experiences but also on new achievements in intellectual and social/emotional development as young adolescents. For the purposes of this study, it was assumed that the self-narrative reflected the development of the self and was an ongoing dynamic process. Based on the data, the following are implications for treatment, policy, and further research.

Clinical Implications 1.

The essential experience for the student with a learning disability is that of

feeling “different.” The experience of being different precedes the actual diagnosis of a learning disability and generates vague feelings of unease as the student attempts to understand the significance of the perceived difference. The central dilemma of the student’s feeling different is the question of normalcy. “If I am different, am I still

106 normal?� Students answer this question based on the responses of parents, teachers, and peers, all influenced by academic institutional policies and practices. At this stage of development, the student’s ability to take in and understand the learning disability is limited and risks injury to the sense of self.

This contradicts the assumption of parents and educators, that the process of identification of a learning disability would be perceived as an important event. Adults focus on the process of identification of the learning disability due to the legal procedures that lead to special education services. Although this process provides a clear understanding of neuropsychological strengths and weaknesses for the adults and access to special education services for the child, it has very little meaning for the student.

2.

The adjunctive function of providing constructive strategies for academic

success is the most significant factor in the development of the sense of self as different and normal. These strategies are based on an understanding of the student’s learning difference. They may include accommodations such as books on tape, prepared notes for a class, extended time for assignments or tests, a study guide or books at instructional levels. Other strategies are simply steps that students may take independently to facilitate learning and performance such as highlighting, recording their own voice reading, using discussion groups, using graphic organizers for material, etc. Students internalize the action focused pathways to success. This has implications for parents, teachers and therapists working with these children. Less emphasis should be placed on explaining the disability and more emphasis on providing the student with strategies for success. Parents should be provided with the necessary training to use and understand these strategies. In a

107 parallel process, parents also will focus on strategies for success versus the deficit of the learning disability. Successful strategies give the student and parent a positive and hopeful interpretation of the learning difference. It also allows the student to create a coherent self-narrative that is not organized around a central theme of defect, rather a picture of competence.

3.

The adjunctive function of effective help, which facilitates the

development of the different/normal narrative, is also the facilitator for selfobject functions. Having established a sense of self as competent, the student is able to take in and use available selfobject functions in a way that supports the cohesive self. The adjunctive function of effective help thus facilitates psychological health which has been shown here to have powerful effects on learning and development. The data presented here demonstrate that psychological health cannot be separated from a child’s academic growth.

4.

The timing of the provision of effective help is significant in allowing the

student to gradually integrate experiences of success into the developing sense of self.

The sense of self develops with the learning disability at first kept outside of the self in a form of disavowal while the strategies for success are attempted and eventually internalized as success follows. The earlier this occurs the more likely that the student will avoid the experience of failure, injury and shame, which leads to the development of the “different/not normal� sense of self with its attendant consequences discussed in #6.

With early help, the student builds a coherent narrative organized around a broad picture of competence. Help should therefore be provided to the student as soon as a difference

108 in learning and performing is noted, independent of any steps to pursue legal identification of a disability.

5.

Social workers in schools and in policy making positions are ideally

placed to advocate for institutional and academic practices that support the psychological health of children. Promoting tolerance for different ways of learning or performing in the school setting allows students to be different and normal. Educating parents and teachers, especially in the early grades, as to the great variation in development, learning styles, and learning needs would support practices that normalize difference.

6.

Developing a sense of self as normal in spite of the perceived difference is

the key to resiliency. These students have developed a cohesive sense of self with competence as an organizing feature. As a result, they are more likely to stay on track developmentally, to develop effective defenses for teasing, to be hopeful about the future, and to experience less negative affect in regard to school.

7.

Students who have become organized around the sense of the self as

“different/not normal” engage in a number of protective strategies. These children have developed a fragile, vulnerable sense of self. For the clinician in private practice or the school setting, an important treatment issue is the recognition that the risk of injury is ever present in the student’s mind. Students will need to be approached not from the area of deficit but from an aspect of the student’s functioning seen as competent or free of risk. Support groups identified as serving students with learning disabilities would be avoided by these students. Instead, groups identified as service oriented, based on interests or activities, or characterized by a sense of safety, would provide an opportunity

109 for belonging and experience of competence. Girls may benefit from an opportunity to build relationships whereas boys may prefer action focused or goal oriented groups.

8.

Parents should be provided with assistance in providing effective help for

their child in order to maintain the parental role and its provision of selfobject functions.

This means that at the very beginning of school, such as kindergarten, parents should be alerted to pay attention to student’s comments about feeling different or inadequate.

Instead of dismissing or attempting to reassure the students, parents and teachers should respond quickly to students seeking competence by providing simple strategies. Students who continue to express feelings of inadequacy and difference should have their concerns addressed by teachers with an opportunity to assess the effectiveness of various supportive strategies.

9.

Some students expressed the belief that they had failed their parents. It is

possible based on the students’ interpretation that their parents had difficulty managing their own narcissistic injury. It is crucial to provide timely support for parents whose children are struggling in school, in order that the empathic connection to the child be maintained. When an affective misattunement of the parent to the child occurs, this may result in scenarios with students taxed beyond their ability to cope, reinjuring them in the home. The awareness of parental disappointment confirms the students’ sense of defect.

Treatment of the child must address the parents’ narcissistic injury and support the parents’ provision of selfobject functions of mirroring, idealizing, and twinship.

Teachers are also susceptible to narcissistic injury. The shame-based child often avoids the teacher, does not respond to offers of help, and appears to avoid cooperating

110 with strategies that would support learning. These children can be very frustrating to work with. They may avoid the usual attempts by teachers to build relationships.

Teachers may feel unsatisfied and frustrated with their inability to reach this type of student. School social workers are in a position to help the teacher understand a student motivated by shame and fear of injury to hide in school. This is not misbehavior, it is a misguided protective strategy. These children should be approached privately, without condemnation. Care should be taken never to call attention to any learning difference in the classroom. Offering them other ways to appear competent to their classmates may be helpful if they are confident of the success.

10.

In order to provide idealizing selfobject functions, parents usually need

specific coaching as to how to manage school demands, homework, and their child’s frustration and discouragement. These demands change over time, based on school requirements and ongoing child development. An excellent exploration of this process refers to the parents’ need for “tooling up” (Himrod, 1995). Not only must parents learn how best to respond to their child but also how to advocate for their child and how to obtain the services needed from the school. Social workers must be proficient in understanding neuropsychological processes in order to help parents understand their child’s functioning and in order to recognize signs of undiagnosed learning disabilities.

Social workers will also have to act as case managers, connecting parents with needed additional resources.

11.

Some of the different/not normal narratives provide a clinical picture of

trauma. The child who has somatic symptoms or demonstrates school avoidance may be

111 suffering from more than anxiety or separation anxiety. They may have been traumatized by earlier experiences in school. A differential diagnosis should be made when children demonstrate intense anticipation of further embarrassment or failure for various school activities. This anticipation and dread does not respond to rational explanations or mere encouragement. The child’s reaction is intense, with a desperate quality that seems out of proportion to the educational situation. These students may need not only interventions in the school setting that are protective but actual treatment for the traumatic level of stress in school.

Policy Implications 1.

It is the provision of effective strategies for help that allowed students to

develop a “different/normal” narrative. The current legally mandated identification process acts as a gateway to special education services in the schools. This requires a degree of failure before the process will begin, potentially leaving the student exposed to ongoing injury and the creation of a fragile, “different/not normal” self. Many students in this study struggled with failure and the emotional consequences long before any identification occurred. I propose that schools provide assistance promptly in the early grades, at the request of teachers or parents. This help would be informed by an understanding of neuropsychological processes, which would provide an opportunity to discover successful strategies for each child. The identification process could begin at a later date, with information from the help sessions contributing to the data.

112 2.

Practices in schools to normalize different ways of learning and

performing help the student resolve the question of difference and normalcy in a positive way. Opportunities for students to perform in areas beyond strict academics, such as the arts, sports, and service in the school also enforce the sense of “different/normal.� Prompt response to peer taunting or teasing regarding learning differences sends a clear message to all students.

3.

School social workers are in a key position to respond quickly to the needs

of parents and children who struggle with learning differences. It is recognized that due to the ratio of school social workers to students, there is often little opportunity to be proactive with these children and families. Along with the recommendation to increase the school social worker ratio to numbers of students, programs should be considered that would allow early educational and emotional intervention for students and parents.

Research Implications 1.

These students were a vulnerable population that required clinically

informed interviewing practices as discussed in the methodology and findings. Although some degree of distress was experienced by many participants, for many students in this nonclinical population the experience of speaking with an informed, empathic adult was a unique and nurturing experience. Several of these students reported an emotional benefit and a better understanding of their learning disability in being able to discuss their learning issues with someone who is not a parent or a teacher. The implication is that the researcher not only provided the experience of being understood but also the experience

113 of empathic sharing with modulation of affect related to their experience. Both the cognitive development of the young adolescent and the opportunity to speak with a neutral professional supported increased understanding. This is an unexpected benefit that should be kept in mind for future research.

2.

Based on the findings of students’ desire to make their learning

differences “not a big deal,” it now is understandable why student participants were difficult to enlist. In particular, males were underrepresented in the study. The significant factor in the decision of parents and students to participate was the recommendation of a trusted “helper,” usually in the form of a parent or teacher. Future research may more easily continue through collaborative relationships between practioners and schools, incorporated into school or community programs, so that talking about the difficult topic could be normalized.

3.

Future research as to how the sense of self of students with learning

disabilities changes based on the selfobject functions of new environments, might be worth pursuing. The descriptions of the sense of self represented in these narratives are based on the current and past degree of responsiveness in the particular milieu. One wonders how going to college, getting the first job, or learning a trade might impact these students and their sense of self.

4.

In this small nonrepresentative sample of students with learning

disabilities, several individual and multiple disabilities were represented: reading disabilities, math disabilities, auditory processing disabilities, speech/language disabilities, spelling/writing disabilities, and two identified cases of ADHD. For all of

114 these students the experience of difference was primary. It is worth exploring whether the specific type of learning disability and its severity would impact the degree of difference perceived and the sense of self as normal or not normal.

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APPENDIX A COVER LETTER TO PARTICIPANTS

116 Diane Leamy, LCSW [phone number] [e-mail address]

Dear Parent(s)/Guardian(s) and Students, I am looking for 13 to 16 year olds and their parents to participate in a study about learning disabilities. This is a unique chance for your teen to describe the experience of having a learning disability for themselves and the benefit of others. Surprisingly, there are few studies that actually look at learning disabilities through the eyes of the student.

Your child could be very helpful by talking to me for two 45-50 minute sessions scheduled at a convenient time and location. Complete confidentiality is maintained at all times, protecting your child’s identity in all data and reports. He or she will receive an I tunes or Borders gift card in compensation for the time involved.

I am a licensed clinical social worker who worked as a school social worker in [a local] School District (1993-2002). Currently, I work in a private practice setting and am enrolled in a doctoral program at the Institute for Clinical Social Work in Chicago. I am conducting this research for my doctoral dissertation at the Institute for Clinical Social Work (312 726-8480). My proposed research has been reviewed and approved by the Institutional Review Board.

I hope you will take this opportunity to call me at [phone number]; or you may email me at [e-mail address] to learn more about the study. You will not be obligated in any way.

This will be my only attempt to contact you since I have been given no identifying information about you or your child. This letter has been sent blindly via school personnel, clinician, or acquaintance who has chosen to make you aware of this opportunity. Feel free to pass this letter to anyone who may be interested in participating.

Your child’s perspective is so important to those who provide services for children with learning disabilities and those who make policies regarding these services. Thank you for your interest.

Sincerely, Diane Leamy LCSW

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APPENDIX B PARENT AND STUDENT INFORMED CONSENT

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INSTITUTE FOR CLINICAL SOCIAL WORK Parental Consent for Participation in Research

I (We) _______________________________________, acting for my (our) self (selves) Name of Parent(s) agree to take part in the research study entitled: Capturing the Lived Experience of Students with a Learning Disability. This work will be carried out by Diane Leamy under the supervision of Michelle Sweet, Ph.D., faculty for The Institute for Clinical Social Work. This work is conducted under the auspices of the Institute for Clinical Social Work, 200 N. Michigan Ave., Suite 4, Chicago, IL 60601, (312) 726-8480.

PURPOSE

This is a research study to learn about how adolescents feel about learning that they have a learning disability and how this affects life at home and at school. Each of the steps that compose the completed study will be subject to scrutiny by the Institutional Review Board. The results of this study will be submitted and defended as a dissertation for the completion of the PhD program. Please ask any questions that you have now or at any time during this process.

PROCEDURES USED IN THE STUDY AND THE DURATION

All participation is strictly voluntary. The names of all participants are confidential. If you agree to participate in this study, we will do the following:

As parents you will do the following: • Sign a Consent Form.

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• Complete a Data Form.

• Complete the Achenbach Child Behavior Checklist.

Your son or daughter will: • Sign a consent form.

• Schedule and participate in two interviews at a time and location convenient for all of us.

• Agree that during both the interviews, an audio recorder will be used in order to make sure I have a complete and accurate record of all comments.

• Agree that during the second interview I will go over comments from the first interview and ask your son or daughter to correct, change or make any additions. I will work with your son or daughter to be certain that I have correctly understood all comments. At any time you or your son or daughter always has the opportunity to ask me questions or to terminate participation in the study.

• Have the opportunity to choose a thank you gift. Since your adolescent is donating time for this study, I am offering a thank you gift of either a Blockbuster or an I tunes gift card. They are valued at ten dollars.

• Have the opportunity to request a summary of my study results.

120 BENEFITS

As you and your adolescent participate in this study, you may have positive feelings about the experience. You will be providing your adolescent the opportunity to tell his/her side of the story. Your adolescent may have a sense of relief or closure in being able to talk about this experience. This study may stimulate more open discussion in your family about learning disabilities. Your adolescent may even develop a greater understanding and sense of self in thinking about and discussing his or her learning disability.

Your adolescent’s sharing of his or her thoughts and feelings will contribute to a better understanding of how others can best help students with learning disabilities.

COSTS

There is no monetary cost associated with participation in this study. There will be a time cost of approximately two to two and a half hours.

POSSIBLE RISKS/SIDE EFFECTS

It is possible that in talking about these experiences, some uncomfortable feelings may be stirred up. While I do not expect this, if your adolescent becomes too uncomfortable, I will offer to stop the interview and take the time to talk about these feelings. You, your adolescent, or I have the right to stop the interview at any time. You or your adolescent may choose to discontinue participation in the study at any time. There will be no negative consequence should you decide to withdraw from the study.

In the unlikely event that your adolescent feels confused or uncomfortable after the interviews have ended, I will schedule a meeting just for the purpose of talking about these feelings. If your adolescent is uncomfortable

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talking with me about these feelings, I will give you the names of three professionals who would be willing to talk further with you.

Should you have questions at any time, please feel free to ask me.

PRIVACY/CONFIDENTIALITY

This research study is being conducted as part of my doctoral dissertation.

During the interview an audio record will be made. I will make a typed copy of the interview, which will not contain any identifying information. At that time the audio record will be destroyed. The audiotapes or typed copy of the audiotapes will be kept in a locked file cabinet. I am the only person who will have access to this cabinet and the typed copy of the interviews. Within three years after the completion of the dissertation, I will destroy all of these materials. I may quote your adolescent in my writing about this study, but no name or identifying information will be included with the quotes.

In order that your adolescent may speak freely about his/her experiences, the interview is private and I will not reveal its content to you the parents. At no time will any of my findings be linked directly to your adolescent. Should you desire, I would be happy to provide you with a summary of my study results.

SUBJECT ASSURANCES

By signing this consent form, I agree to take part in this study. I have not given up any of my rights or released this institution from responsibility for carelessness.

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I/We may cancel my/our consent to continue in the study at any time without penalty or loss of benefits. As parent/s, I/We have the right to terminate participation in the study at any time. Our or our adolescent’s relationship with the researcher or staff of the ICSW will not be affected in any way, now or in the future, if I/We refuse to take part or begin the study and then withdraw.

If I have any questions about the research methods, I can contact Diane Leamy at [phone number] or Michelle Sweet at [phone number]. If I have any questions about my rights as a research subject, I may call Daniel Rosenfeld M.A., Chair of Institutional Review Board, ICSW, 200 N. Michigan Ave., Suite 407, Chicago, IL 60601, (312) 726-8480.

SIGNATURES

All consent forms must be signed and dated. They must be explained to participants and witnessed by the person who is explaining the procedure.

I HAVE READ THE CONSENT FORM AND I AGREE TO TAKE PART IN THIS STUDY AS IT IS EXPLAINED IN THE CONSENT FORM.

__________________________ Signature of Parent(s)

________________________ Date

I CERTIFY THAT I HAVE EXPLAINED THE RESEARCH TO ___________________________________________________________, Parent/s AND PARENTS HAVE EXPLAINED BACK IN HIS/HER OWN WORDS UNDERSTANDING OF STUDY PROCEDURES AND THIS CONSENT FORM. THEY HAVE AGREED TO PARTICIPATE FREELY. I AGREE TO ANSWER ANY

123 ADDITIONAL QUESTIONS WHEN THEY ARISE DURING THE RESEARCH OR AFTERWARD.

___________________________ Signature of Researcher

_________________ Date

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INSTITUTE FOR CLINICAL SOCIAL WORK Adolescent Consent for Participation in Research

I ______________________________________, acting for myself, agree to Name of Participant take part in a research study entitled: Capturing the Lived Experience of Students with a Learning Disability. This study will be carried out by Diane Leamy LCSW, under the supervision of Michelle Sweet Ph.D. This study is being conducted under the auspices of the Institute for Clinical Social Work, 200 N. Michigan Ave., Chicago, IL 60601, (312) 726-8480.

Purpose of the Research This is a research study to learn about how adolescents feel about learning that they have a learning disability and how this affects life at home and at school. I will read this form out loud to you as you also read this complete form silently to yourself. Please ask any questions that you have now or at any time during this process.

Procedures Used in the Study If you agree to participate in this study, you will: • Schedule and participate in two interviews at a time and location convenient for both of us. • Agree that during both the interviews, an audio recorder will be used in order to make sure I have a complete and accurate record of all your comments.

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• Agree that during the second interview I will go over your comments from the first interview and ask you to correct, change or make any additions. We will work together to be certain that I have correctly understood all of your comments.

You always have the opportunity to ask me questions.

• Have the opportunity to choose one of the following thank you gifts. Since you are donating your time for this study, I am offering a thank you gift of either a Blockbuster or an I tunes gift card. They are valued at ten dollars.

• Have the opportunity to request a summary of my study results.

Your parents will do the following: • Sign a Consent Form.

• Complete a Data Form.

• Complete the Achenbach Child Behavior Checklist.

Benefits As you participate in this study, you may have positive feelings about being able to tell your side of the story. You may have a sense of relief or closure in being able to talk about your experience. You may even find you will develop a greater understanding and sense of yourself in thinking about and discussing this part of your life. Your thoughts and feelings will contribute to a better understanding of how to help students with learning disabilities.

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Cost There is no monetary cost to participate in this study. You will be donating approximately two to two and a half hours of your time.

Possible Risks/Side Effects It is possible that in talking about your experiences, some uncomfortable feelings may be stirred up. While I do not expect this, if you become too uncomfortable, I will offer to stop the interview and take the time to talk with you about these feelings. You or your parents have the right to stop the interview or discontinue your participation in the study at any time. There will be no negative consequence should you decide to withdraw from the study.

In the unlikely event that you feel confused or uncomfortable after the interviews have ended, I will meet with you just for the purpose of talking about these feelings. If you are uncomfortable talking with me about these feelings, I will give your parents the names of three professionals who would be willing to talk further with you.

Should you have questions at any time, please feel free to ask me.

Privacy/Confidentiality This research study is being conducted as part of my doctoral dissertation.

During the interview an audio record will be made. I will make a typed copy of your interview, which will not contain any identifying information. At that time the audio record will be destroyed. The audiotapes or typed copy of

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the audiotapes will be kept in a locked file cabinet. I am the only person who will have access to this cabinet and the typed copy of our interviews. Within three years after the completion of the dissertation, I will destroy all of these materials. I may quote you in my writing about this study, but your name or any identifying information will not be included with the quotes.

In order that you may speak freely about your experiences, your interview is private and I will not reveal its content to your parents. At no time will any of my findings be linked directly to you.

Subject Assurances By signing this consent form, I agree to take part in this study. I am not giving up any rights or releasing this institution from responsibility for carelessness.

I may cancel my consent to continue in the study at any time without penalty or loss of benefits. My parents have the right to terminate my participation in the study at any time. My or my parents’ relationship with the researcher or staff of the ICSW will not be affected in any way, now or in the future, if I refuse to take part or if I begin the study and then withdraw.

If I have any questions about the research methods, I can contact Diane Leamy at [phone number] or Michelle Sweet Ph.D. at [phone number]. If I have any questions about my rights as a research subject, I may call Daniel Rosenfeld M.A., Chair of the Institutional Review Board, ICSW, 200 N. Michigan Ave. Suite 407, Chicago, IL 60601, (312) 726-8480.

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Signatures All consent forms must be signed and dated. They must be explained to participants and witnessed by the person who is explaining the procedure.

I HAVE READ THE CONSENT FORM AND AGREE TO TAKE PART IN THIS STUDY AS IT IS EXPLAINED IN THE CONSENT FORM.

_____________________________ Signature of Participant

_____________ Date

I CERTIFY THAT I HAVE EXPLAINED THE RESEARCH TO

_______________________________ Participant AND PARTICIPANT HAS EXPLAINED BACK IN HIS/HER WORDS UNDERSTANDING OF THE STUDY PROCEDURES AND THIS CONSENT FORM. HE/SHE HAS AGREED TO PARTICIPATE FREELY. I AGREE TO ANSWER ANY ADDITIONAL QUESTIONS WHEN THEY ARISE DURING THE RESEARCH OR AFTERWARD.

__________________________________ Signature of Researcher

_____________ Date

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APPENDIX C SEMI-STRUCTURED INTERVIEW

130 Semi-Structured Interview Begin with explanation of research aims, informed consent, and answer questions.

1. Tell me about yourself, what do you like to do? What don’t you like to do?

2. Tell me about your learning disability. How does it affect you?

3. History of LD experience -

When were you identified as SLD?

-

How was it decided?

-

Who told you?

-

How do you understand it?

-

Did you ever wonder about your learning ability before then, why?

4. How did this affect your relationship with parents, siblings, friends, and teachers?

5. Is there a particular school experience you’d like to talk about?

•

What parts of school have you enjoyed?

•

What has been the most difficult aspect of school, life outside of school?

•

If you could talk to an educator who makes decisions about kids with LD in school, what would you say?

6. What are your thoughts about the future?

•

How do you picture yourself?

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APPENDIX D DESCRIPTIVE DATA COLLECTION FORM

132 Descriptive Data Collection Form Participant Data:

Participant #_______

First Name of Student____________________________ Grade________ Gender ___

Time in school system ____________

SLD_______________________________ Grade Qualified_______________

Age________________

Date Qualified______________

Professional Help______________________

Father’s Name _____________________ Prev LD History?______________________ Age ___________ Education___________

Mother________________________

Occupation ___________________

Prev LD History? ___________________

Age _____________ Education _________

Occupation____________________

Siblings: Names _____________________ Ages______________ Gender ________ _______________________

______________

_________

_______________________

______________

_________

Any LD history siblings? _______________________________________________________

Interview Appts #1____________________

Important information identified by parents:

#2_______________________

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