How Visibly Different Children Respond to Story-Creation Deandria Frazier

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FLORIDA STATE UNIVERSITY

COLLEGE OF VISUAL ARTS, THEATRE AND DANCE

HOW VISIBLY DIFFERENT CHILDREN

RESPOND TO STORY-CREATION

DEANDRIA FRAZIER

A Dissertation submitted to the Department of Art Education in partial fulfillment of the requirements for the degree of Doctor of Philosophy

Degree Awarded Spring Semester, 2014

DeAndria Frazier defended this dissertation on March 19, 2014. The members of the supervisory committee were:

Marcia Rosal Professor Directing Dissertation

Larry Scharmann University Representative

David Gussak Committee Member

Thomas Anderson Committee Member

The Graduate School has verified and approved the above-named committee members, and certifies that the dissertation has been approved in accordance with university requirements

ACKNOWLEGEMENTS

Completing my dissertation has been one dream I have had since a child. It was often told to me that I would be unable to do it. But for the help and persistent encouragement from my mother, Deborah Glover, and my church family, I would have never been able to complete this process. After having to endure at least four eye surgeries during the research process and the challenges of trying to find participants, I found it difficult to press on and wanted to give up many times. These individuals told me to keep fighting for what I wanted by keeping the faith and believing all things were possible.

I would also like to thank Dr. Kenneth Kilgore, who passed away in 2011. Before he left this world, he had me come sit next to him on a pew at church. He told me that he had been observing me and that he saw the worries on my face. I could hardly speak to him without crying. In that short meeting, he told me not to give up and to keep pressing on. I remember that moment and even now get lumps in my throat just thinking about that conversation. In those few moments he acknowledged my struggles, and he offered me the one thing he and I never liked to do. He offered a hug, one that I needed and had refused to take from others during my dissertation process. Dr. Kilgore knew me as a child, but I did not come to fully appreciate him until I began having more eye surgeries in 2009. When it was told in church that I would be having eye surgery, I was mortified. I did not want anyone to know. However, Dr. Kilgore told me that I was a testimony and that I needed to tell my story. He told me that he had watched God work a miracle. The miracle was not just in my physical transformation but in what God had allowed doctors to learn and accomplish in order for me to have my surgeries. For that, I say thank you.

Thanks must also be given to my dissertation committee: Dr. Marcia Rosal, Dr. David

Gussak, Dr. Tom Anderson, Dr Larry Scharmann, and Dr. Barbara Edwards. I know it has not been easy working with me because of all of my challenges, but your patience was greatly appreciated. You never gave up on me. Thank you.

TABLE OF CONTENTS

LIST OF TABLES ...... viii

ABSTRACT ...... ix

CHAPTER ONE: INTRODUCTION ...... 1

Context ...... 3 Purpose ...... 7 Research Question ...... 7 Justification ...... 7 Symbolism and Storytelling ...... 8 Definitions...... 11 Overview of the Study ...... 12 Summary ...... 13

CHAPTER TWO: LITERATURE REVIEW ...... 15 Psychology of Storytelling and Children ...... 15 Narrative Therapy ...... 18 Bibliotherapy...... 20 Art Expression and Development in Children ...... 23 Art Therapy ...... 30 Disfigurement and Child Development ...... 31 Storytelling and Children with Visible Differences...... 36 Conclusion ...... 38

CHAPTER THREE: METHOD ...... 40

Research Question ...... 40 Qualitative Research ...... 40 Grounded Theory ...... 42 Participants ...... 44 Procedures ...... 46 Data Collection ...... 49 Interviews ...... 51 Observations ...... 51 Audio and Visual Materials ...... 52 Memo Writing ...... 53 Data Analysis ...... 53 Reliability and Validity ...... 54 Triangulation ...... 54 Member Checking ...... 55 Thick Description...... 55 Summary ...... 55

CHAPTER FOUR: RESULTS ...... 56

Case 1 ...... 58 ZJ’s Initial Interview ...... 61 Story-Creation Process...... 64 ZJ’s Video 1 ...... 64 ZJ’s Video 2 ...... 67 ZJ’s Video 3 ...... 71 ZJ’s Video 4 ...... 73 ZJ’s Video 5 ...... 76 ZJ’s Video 6 ...... 79 ZJ’s Video 7 ...... 81 ZJ’s Video 8 ...... 85 ZJ’s Video 9 ...... 87 ZJ’s Video 10 ...... 89 ZJ’s Observations...... 90 ZJ’s Behavior Logs ...... 94 ZJ’s Exit Interview ...... 95 Summary of ZJ’s Work ...... 100 Case 2 ...... 100 CR’s Initial Interview ...... 103 Story-Creation Process...... 104 CR’s Video 1...... 105 CR’s Video 2...... 108 CR’s Video 3...... 111 CR’s Video 4...... 113 CR’s Video 5...... 116 CR’s Video 6...... 119 CR’s Video 7...... 122 CR’s Video 8...... 125 CR’s Video 9...... 127 CR’s Video 10...... 129 CR’s Video 11...... 132 CR’s Observations ...... 137 CR’s Behavior Logs ...... 144 CR’s Exit Interview ...... 144 Summary of CR’s Work ...... 146 What was Learned from the Two Studies ...... 146 Summary ...... 150

CHAPTER FIVE: DISCUSSION ...... 151

Overview of the Results ...... 151 The Participants ...... 154 The Story-Creation Experience...... 155 Reading the Story to Others ...... 157

Comparison of Story Characters to Self ...... 157 Psychological Implications of Art ...... 159 Response to Developing a Story ...... 160 Development of a Theory ...... 161 Limitations ...... 163 Suggestions for Further Research ...... 164 Conclusion ...... 168

APPENDICES ...... 170

A PARENT CONSENT FORM ...... 170 B CHILD ASSENT FORM ...... 171 C PARENT QUESTIONNAIRE ...... 172 D INITIAL INTERVIEW QUESTIONNAIRE ...... 173 E STORYTELLING EXPERIENCE ...... 174 F BEHAVIOR LOGS ...... 175 G STORY-CREATION OF ZJ ...... 176 H STORY-CREATION OF CR...... 178 I IRB APPROVAL FORMS ...... 183

REFERENCES ...... 195

BIOGRAPHICAL SKETCH ...... 203

vii

LIST OF TABLES

Table 1: ZJ’s Responses to Initial Interview Questionnaire ...... 62 Table 2: ZJ’s Responses to Storytelling Experience Questions ...... 95 Table 3: ZJ’s Descriptive Behaviors ...... 97 Table 4: ZJ’s Themes ...... 98 Table 5: CR’s Responses to Initial Interview Questionnaire ...... 103 Table 6: CR’s Descriptive Behaviors ...... 142 Table 7: CR’s Themes ...... 143 Table 8: CR’s Responses to Storytelling Experience Questions ...... 145

viii

ABSTRACT

Many children with disfigurements have low self-concept as a result of their beliefs about themselves and about what society thinks about them. Some disfigured children are teased, taunted, stared at, and made to feel inferior to those perceived as normal. Many have no idea how to respond to the ridicule and, therefore, may become withdrawn or turn to negative tactics to defend themselves. The objective of this qualitative research is to study how creating, illustrating, and telling a story when asked to use one’s visible difference in some context of the story might affect children with visible differences.

The study participants included two children, ages 10 and 12, who were identified by mental health professionals as struggling with being visibly different. Participants were guided to construct a story using their disfiguring condition in the story in some manner. Children selected to be in the study had to represent one of three types of disfigurement—congenital, traumatic, or disease process. They were seen over a period of six weeks and provided with paper, pencils, crayons, and markers to complete the task. The participants were interviewed initially and upon exit. The interviews were semi-structured and were used to identify some of each participant’s experiences as a person with a disfigurement and to address their storytelling experiences.

After the initial interviews, children individually constructed their stories with the assistance of the researcher. These sessions were conducted for 6 weeks, twice a week for one hour. During the final session, children were asked to read their stories to peers or family members. Following this session, the exit interview was conducted. Data were gathered throughout the study and consisted of interviews, observations, videotaping and recording, and memo writing. Research took place in an inpatient setting at a mental health hospital in the mid- west. Both participants were patients on the residential unit at the hospital, which was for

individuals who were physically aggressive on a persistent basis. Each had entered the hospital on the acute unit, which was for individuals who had harmed themselves or another. It was not until the participants were on the residential level that they were allowed to participate.

Results of the study suggest that children with disfigurements will like creating a story with their visible difference integrated into the story, even when faced with challenges during the process. Findings also revealed that these same children may discuss their visible differences while creating the story and may identify how they respond to others regarding their visible difference. Results also indicated that visibly different children would also like to read their stories to others, not just family members.

CHAPTER ONE

INTRODUCTION

Storytelling offers children the opportunity to express their desires and wishes in oral, written, and pictorial forms (Gillard, 1996; Mason, 1996). It also offers children the opportunity to reshape experiences and learn from their triumphs or trauma (Gillard, 1996). Story creation provides children with the opportunity to choose the type of information they wish to reveal

(Gillard,1996).

Children, as well as adults, with disfigurements sometimes have difficulty expressing how they feel to others. Many who have difficulty communicating with others may be socially anxious or may even withdraw from others because of their physical appearance (Bradbury,

1996). They may also be self-conscious and have a poor self-image because of how they see themselves and how they believe others see them (Thomas & Kent, 2001). These negative images may become internalized in their unconscious to help with coping. Storytelling provides children with a unique way to express themselves safely through the confines of imagination and symbolism (Gillard, 1996).

As an adult born with a slight disfigurement, I can attest to some of the challenges facing those with visibly differences face. Being teased as a child and not knowing what to say to others was one of my biggest struggles, but I also struggled with standing out and being different from everyone else. As an art therapist who works with children and adults, I am constantly faced with the stares, the teasing, the whispering, and the questions that come along with being visibly different.

Thus, I decided to create a story to help others, especially children, understand what it is like to be teased and talked about. I also wanted a way to help other visibly different children

recognize that they are not alone, that there are others who experience what they experience. I must also admit that creating the story was also a way for me to vent, a way for me to heal, and a way for me to re-experience and change some of the negative outcomes I have personally experienced.

The study conducted was generated from completion of a personalized fable described here. A few years ago, a professor in an art therapy class asked the students to create a fable. He did not identify a specific topic for the fable, but he did ask us to be creative. The task gave me an opportunity to complete the fable that was already started but never completed. The fable was created with pictures. The character created represented me but did not look exactly like I do.

However, she wore similar clothing (my favorite dress in the second grade). I named the character Funny Face, and Funny Face also had a visible difference. The anomaly created for the character was not my exact disfiguring attribute, but it was a representation of my visible difference. As the story was written, pictures were created to go along with it.

Telling the story in written form and creating a visual representation of the scenes seemed to draw out a physical exhaling of various emotions, recollections of both happy and sad times. In experiencing the sad times, I was able to use the words and characters in the story to deal with some of the teasing and stares once experienced. After the story was complete, I read it to the class. Doing so was not easy; I had mixed emotions about sharing something so personal.

After the reading of the story and the response from peers, I was elated about the story at that moment and wanted to share my story with others and help those struggling with being visibly different through storytelling. More specifically, I thought that creating a story, at an early age, would be more beneficial for those who were struggling with being visibly different. I could recall about what age I was when I recognized the stares and the teasing. I was about the

same age identified by Harris (1997): seven or eightyears of age. As a result, the research I proposed focused on identifying how children would respond when asked to create, tell, and illustrate a story using their disfiguring attributes in some manner.

In the research discussed herein, the reader will find the research question and the objective, definitions regarding disfigurement and the rationale for the research. The rationale of the research reviews the significance of storytelling and its symbolism. In chapter two or the literature review, the researcher discussed how children are affected by storytelling and reviewed various therapies that incorporate narratives, stories or pictures to assist children threw therapeutic issues. The literature review also analyzes theories of artistic expression and development in children and the use of storytelling with children with visible differences.

Chapter three of this research reveals the method used in the research, the data collection process, its analysis and the effectiveness of the research. Chapter 4 the results and findings of the research is reported and in chapter five a summation and the conclusion of the research is provided.

Context

The objective of this research was to generate a theory regarding how children with disfigurement respond to storytelling that encompasses drawing, speaking, and intentional reference to self within the literary content. Although definite measures were taken to reduce bias within the research, there were some predictions that were based on prior research findings and my personal experience with creating a fable. It was predicted that children participating in the study would be hesitant at first to use their visible differences to create a story but, as their stories began to form, they would become more eager to complete the task. It was also predicted that children would be eager to share their stories with others after completion.

Much of the literature reviewed, concerning helping individuals with disfigurement and issues about their appearances, emphasized getting individuals to talk about what they are experiencing and to be open with others about what happened to them (Bradbury, 1996;

Changing Faces, 2001; Frances, 2004; Newell, 2000). In a review of psychological adjustment to acquired and congenital disfigurement, Thomas and Kent (2001) concluded that experiences with having a disfigurement vary according to the individual and his or her interactions with other individuals and their environment. Thomas and Kent indicated that how individuals with disfigurements adjust to their appearance depends on how their appearance is perceived by the individual themselves and those they interact with. These personal perspectives are likely to be based on predisposed interactions between the individual’s fundamental perception of self and his or her interactions with the people in his or her environment. The review also indicated that interventions for helping those who are disfigured are concentrated on coping with social encounters, dealing with the individual’s fundamental thinking and behaviors or both.

Interventions for helping individuals with disfigurements are wide ranging. They may encompass using the media, schools, friends, family members, and psychological support

(Rumsey & Harcourt, 2005). Psychological support is the emphasis of this research. According to Bradbury (1996), some individuals who are disfigured suffer psychologically and emotionally from issues related to their disfigurement and, during certain periods of their lives, may need help from a professional, such as a counselor, therapist, psychologist, or social worker, to work through some of the issues they face. Some specific issues or problems Bradbury described were the responses of family, friends, and strangers; disruption to normal patterns of work and play; disruption to body image; self-consciousness; coping with treatment and decision-making about treatment; and posttraumatic stress.

Much of the literature regarding using storytelling as a psychotherapeutic method with children focused on getting children to tell their stories—whether real or imaginary—in some aspect to help change how they see themselves in relation to their problems (White & Epton,

1990; McLuckie, 2006; O’Connor, Meakes, Pickering, & Schuman, 1997),to help comfort them in times of trauma or stress(Miller & Boe, 1990, as cited in Alexander, Miller, & Hengst, 2001), or to help with communication barriers between the child and therapist (Gardner, 1993). Hanny and Kozlowska (2002) used storytelling books as a way of getting traumatized children involved in family therapy to discuss nonverbally through pictures and words issues related to parental conflict and unresolved parental relationships and separation. The storybook method was used to help children recall memories and reduce anxiety during the discussion of traumatic events. The book was also used as a way to document the family story, with the child included in the process.

Current literature on children with visible differences has emphasized getting children to tell their stories in regards to their differences to peers and family members to acknowledge what happened and to discuss concerns they and others might have regarding the children and their visible differences (Changing Faces, 2003). The “telling” of one’s story, according to most of the literature on children with visible differences, seems to be an indirect reference to an exchange of oral dialogue to another individual or group rather than a nonverbal outlet for what is expressed in written or pictorial form. The intervention explored in this current research was an attempt to implement these tactics, including oral storytelling, because research suggested that a realistic or analytic discussion with children regarding their experiences is a difficult undertaking (Gardner,

1993). Therefore, the research discussed within this paper will delve into how storytelling effects visible different children as they tell and create their own unique story.

Mallan (1992) identified storytelling as a creative oral tradition in which words are used to create mental pictures. According to Wagner (1970), the earliest storytellers told members of their group about surviving an experience. The telling of the story may have been to boast, to warn, to instruct, or to amuse (Wagner, 1970). According to Denman (1991), stories may also serve as a means for promoting a healthy outlook for individuals and their lives.

Many stories were told and retold. As they were being retold, story content would change. Content that seemed trivial or unimportant was omitted and information of universal appeal survived (Wagner, 1970). The age, sex, or even order of events in a story may have been forgotten, but the story itself remained (Denman, 1991). The tale that emerged was a folktale of classic literary form (Wagner, 1970). Denman compared the retelling of a story to that of a new performance by a conductor recasting a piece of music.

Storytelling is older than recorded history (Denman, 1991). It is an art form not bound by continent or culture. Stories attach the individual to that which came before, including the primitives (Denman, 1991). Denman contended that all human experiences are viewed and reviewed through the lenses of stories. He further insisted that individuals see themselves through stories. Understanding triumph, heartache, and other experiences of stories being told aids the individual in becoming a part of a story. Mallan (1992) supported this notion by suggesting that the stories of old appeal to people today because they are able to see themselves in the stories, relating to what they hear and identifying with the experience.

Mallan (1992) stated that, to convey meaning within the story or to help the listener experience the story, the storyteller may attempt to use his or her face, voice, and body, as well as personalize the story. She further indicated that, although many stories have been written down, the power and color provided in the voice of the individual bring an historical story to its

original oral state. The telling of the story itself has its own rituals, rules, and patterns (Mallan,

1992). The storytelling experience is likely to have some type of framework in which the story is told, a formality, and a way in which the audience participates (Mallan, 1992). For example, the framework of a story might include a beginning, middle, and end. The formality of a story might be serious or funny, and the audience might be asked to participate at a given point in the story or asked to sit silently as the story is told.

Purpose

The purpose of completing this study is to increase the knowledge base on how to assist visibly different children in coping with their visible differences in lieu of the traditional therapies. It is also to identify how story-creation may help in assisting these children cope with their malformations, their peers, friends, loved ones and society.

Research Question

The following research question guided this study:

How will visibly different children, with a low self-concept, respond when asked to create, illustrate, and tell a story with a focus on their visible difference within the story context?

Justification

According to Mason (1996), individuals enter into a special state of perception and receptiveness as they listen to a story. She reported that students who help create a story feel a sense of ownership in it and are more likely to retell it to those for whom they are close. Mason further contended that the self-confidence of students may increase when the story they tell is acknowledged and accepted by teachers and classmates. Goodman (1986, as cited in Mason,

1996) claimed that, through participation in the creation and storytelling process, students experience whole language goals of choice, ownership, and relevance.

According to Gillard (1996), when telling a personal story, children relive their lives and, in doing, so may subtly attempt to reshape an experience into a desire, wish, or fantasy.

Whatever the case, painful or joyous moments revisited allow children to take some control over emotions felt. First, the child chooses a memory, then makes a decision about what to say or reveal about it. By restructuring the story, the child begins to make sense of his or her experiences and, in the process, creates his or her own fable.

The experience of artistic expression may be naturally satisfying and healing for some individuals (Freeman, Epton, & Lovovits, 1997). Hanny and Kozlowoka (2000) contended that centering on pictures and narratives uses “children’s developmental capacities and spontaneous pleasure in the creation of art, thus minimizing anxiety and enhancing feelings of mastery, competence, and hope” (p. 37). Art therapy attempts to make explicit the unspoken communications of children who have difficulty expressing their emotions in a verbal context.

Therefore, with the assistance of art as one’s verbal communicator, children may begin to express in words their desires and internal feelings through storytelling (Tanaka et al., 2003).

According to Riley (1997), “[A]rt expressions clarify the problems by inviting a narrative, solution-focused approach, and makes material visually available as an aid to the process” (p.

284).

Symbolism and Storytelling

Many practitioners have suggested that storytelling can be a means by which children express their thoughts and emotions (Gillard, 1996). Some also emphasize the notion that meaningful stories play a crucial role in determining whether children become invested in the stories themselves (Gillard, 1996). According to Engel (1995), when this infusion occurs, the story becomes a symbolic representation of an experience the child has had. The cause of the

transference, according to Gillard, is that the narrative is not a direct replication of the child’s true story.

Previous research has also identified how storytelling can be used as a transitional object or symbol to help children cope with a particular condition. In a study conducted by Miller and

Boe (1990, as cited in Alexander et al., 2001), children being treated for psychic trauma were provided books related to their physical needs to study the use of storytelling with this population. The books had been carefully selected with recommendations from qualified professionals. Book categories included such themes as aggression, abuse, fear, nightmares, separation, and abandonment. Children were allowed to select their own books, but they were encouraged to choose one that was related to their psychological situation. Results indicated that the stories affected the children to such a degree that they began to mingle feelings that they had for loved ones with the stories. By doing so, children were able to use the stories as comforting agents when parents were not at the hospital with them.

According to Jung (1964), some things go beyond human comprehension, and such incomprehensible and indefinable information is represented in symbolic form. Symbols are natural and spontaneous products that can be manifested through dreams, cognition, emotion, behaviors, and circumstances. They are formed through meaningful experiences and occur when an individual separates the view of a particular concept from its action. The image manifested allows the individual to be less attached to the action, thereby having to make an emotional investment in its formation (Greenspan & Shanker, 2004). Piaget (1962) identified a symbol as a narrow representation or image with a conceptual representation motivated by signifiers, components that resemble the signified. According to Piaget, a metaphor is a symbol; it is connected to an image and the thing it represents. For example, a child may tell a story about a

wounded animal that recovers from being hit by a car. The child’s telling of the story may be an actual symbolic representation of his or her being hit by a car. Piaget asserted that individuals must make an emotional investment of some type in creating a symbol because they are influenced by feelings and experiences.

Symbols have a variety of venues in which they appear; play, language, pictures, metaphors, gestures, and cultural rituals are just a few of these venues (Fontana, 1993; Smith,

1979). According to Engel (1995), the language used in stories functions as a symbol. Through a child’s words or phrases, he or she is able to release feelings and emotions into a story rather than at an individual for whom the words were intended. For example, a child who is visibly different and teased often may use an animal or character to react to some of the teasing received from peers. In an effort to comfort themselves, children might also exaggerate stories about people in their lives and past experiences (Engel, 1995). For example, a mother who finds her children fighting might inform them that fighting is wrong. Because of the conversation, one of the children, who sees two friends fighting, tells the friends that fighting is wrong.

According to Sarbin (1986, as cited in Vitz, 1990), individuals create stories about the lives they live. They explain life circumstances through a narrative means. These narrative plots guide what individuals’ recall, what they plan, and the different emotions they express.

Drawings, like stories, can also carry symbolic meaning. According to Wilson (2001), symbols are used to help one to adapt and communicate; they allow hidden meaning within the individual to be expressed consciously. In a drawing, painting, sculpture, or other type of media, individuals may express unconscious or hidden meaning as they create. Wishes and other desires prohibited from the view of the conscious are substituted through the unconscious production of art (Wilson, 2001).

Although research studies have paired the stories of individuals with their psychological needs to assist children in coping, I have yet to find a study that asks children to incorporate an aspect of their physical attributes into a self-composed narrative to determine whether doing so affects their self-concepts. However, the review of storytelling literature indicated that, when telling or listening to a story, children unconsciously place themselves into the narratives by relating their experiences to the story told.

Definitions

Disfigurement

There are no clear-cut ways to determine what is and what is not a disfigurement. Each individual has his or her own view about what constitutes a disfigurement. The attitudes are based on one’s past experiences, attitudes, values, and interactions with others. One person’s view of a disfigurement may not be the views of another (Rumsey & Harcourt, 2005). Hughes

(1998) identified disfigurement as a non-congenital condition acquired after birth while Bradbury

(1996) grouped congenital and acquired anomalies within the scope of disfigurement. A scale for measuring what constitutes a disfigurement does not exist (Changing Faces, 2001). Therefore, for the purposes of this research, I use Bradbury’s three basic categories of disfigurement types to define a disfigurement: congenital, traumatic, and disease processes.

Congenital disfigurement

A congenital disfigurement is one that occurs through genetic inheritance; there is a genetic irregularity that occurs during the early stages of a woman’s pregnancy or a mishap occurs in the womb. Disfiguring conditions include cleft lip or palate and facial hemangiomas

(birthmarks).

Traumatic disfigurement

These anomalies are acquired as a result of an accident. Causes of such misfortune may include traffic collisions, burn injuries, lacerations, or assault by an animal or individual.

Disease processes

This type of disfigurement is related to a disease acquired by the individual.

Disfigurement comes about by means of the disease itself or from surgical intervention.

Examples include having a breast removed because of cancer or dermatological conditions such as acne and eczema.

Storytelling

The term storytelling has many different meanings. For some, the term means to narrate a story to an individual or group (Wattis, 1992). For others, it is a creative action that provides a mental representation using words (Mallan, 1992). In addition, some assert that storytelling is not just oral but can be written words that describe a particular happening (Engel, 1995) or a story could be told using pictures (Tanaka, Kakuyama, &Urhausen, 2003). For the purpose of this investigation, storytelling was defined as oral, written, and pictorial communication of one’s thoughts and ideas in a meaningful way.

Overview of the Study

In the study below two children with visible differences and low sense of self were observed as they participated in creating a story that included their visible differences.

Participants and their guardians were approached by a mental health professional to request participation in the study. After each participant agreed to participation and signed a consent form they began participation in the study. Each participant participated in an initial and exit interview. The initial interview inquired on the participant’s responses to others regarding their

visible differences and the exit interview inquired on the participant’s reaction to story creation.

Participants were allowed to select from a variety of media that included crayons, pencils, colored pencils, and markers. They were also provided with a tablet to draw, a ruler, pencil sharpener, and eraser. The participants also used a computer to input there stories with the researcher’s assistance. They were guided by the researcher in including a beginning, middle and end to their stories and they once their stories were complete they were asked to read their stories to others.

To assess the responses of the children participating in the study, the researcher videotaped each session and asked several mental health observers to review the videos and write down the behaviors of the participants. The researcher also utilized memo writing as a tool to monitor the participants and their personal perspectives. The researcher also attempted to monitor the behavior of the children at the beginning, middle, and end of the study by having staff members of the mental health hospital at school write down the behavior of participants.

However, this did not occur but instead the behavior logs of the participants were used to monitor behavior. Participants’ drawings were also reviewed by the researcher and observers and theses reviews were analyzed.

Summary

The purpose of this qualitative research study was to examine the effects of storytelling on children with visible differences. Because societal views of physical appearance appear to play an ongoing role in how individuals view themselves, finding a way to help individuals cope with the complexities of being visibly different seems to be essential. Through personal exploration, I found storytelling to be a unique way of coping with my visible difference and a

way of helping others to understand some of the issues I face. In turn, I found it easier to talk about my visible difference and deal more effectively with the people around me.

Through this present research, I hoped to identify pertinent information concerning storytelling that would assist art therapists, counselors, psychologists, and other mental health professionals to understand more deeply the needs of children who are struggling with being visible different. A review of the literature regarding storytelling and its practice with children is presented in Chapter 2. Included in the review will be various storytelling methods or techniques in therapy, a history of child art and development, art modalities that might be used as assessment tools, and the development of visibly different children and how stories have been used to assist these children in coping will be discussed. The research methodology, a qualitative framework used to generate theory, will be used to assist in the investigation of using storytelling with children who are visibly different and is presented in Chapter 3. In Chapter 4, the results will be presented and then discussed in Chapter 5.

CHAPTER TWO

LITERATURE REVIEW

This chapter is an overview of how children respond to storytelling and the effects it may have as events are stories are read, revealed or created by children. This chapter also provides a brief synopsis of narrative therapy, bibliotherapy, and art therapy. Within the description of these modalities the researcher identifies how stories, pictures, and poetry may be used to assist individuals therapeutically. Also within this chapter there is a discussion of how children may express themselves through art and how art may develop in children. The final portion of this chapter will reveal how children with visible differences have been helped through the use of storytelling, various children’s books that discuss common visible differences will be discussed, and an overview of how children with visible differences may respond to storytelling is examined.

Psychology of Storytelling and Children

According to Harvey (1996), each individual is a storyteller with an array of stories in his or her memory. These stories, when told to others—whether they be family, friends, or acquaintances—affect the person’s unique life experience. If retold by another, the story inevitably changes; there are no exact replications. Each person provides his or her uniqueness to the story. Children’s stories, in particular, can provide a wealth of information as well. Their stories may contain information that alludes to how they feel about themselves, interpersonal relations, wishes and fantasies, and other character traits (Brandell, 1988).

Narratives have long been apart of psychotherapy, not just in the verbal communication between the therapist and client but also in other capacities. Storytelling has been used in assessments to evaluate the psychological well-being of individuals, and they have been used as

therapeutic methods and techniques to help children in therapy. The Thematic Apperception Test

(TAT) is one widely recognized diagnostic instrument used to assess both children and adults

(Groth-Marnat, 2003). In this projective technique, participants are asked to view pictures and respond to each of them individually by telling a story (Murray, 1943). Among the diagnostic instruments specifically designed for children are the Children Apperception Test (CAT) and

Make-a-Picture-Story (MAPS). The CAT, derived from the TAT, has picture cards of animals rather than people and is used with children aged 3–10 (Bellak, 1954). The MAPS picture diagnostic instrument takes a different perspective to that of the TAT and CAT. Instead of children being provided a set of cards with specific images, they are allowed to create their own images (Gardner, 1993).

Kritzberg (1975) developed two storytelling games to use with children in psychotherapy.

The structured therapeutic games are to be used with children who have difficulty engaging in free play. The purpose is to help therapists gather information from a child in a thorough manner while also analyzing the child’s story. The two therapeutic games are identified as the

Therapeutic Imaginative Storytelling Kit (TISKIT) and the Tell-A-Story-Kit (TASKIT).The two kits are used in a similar fashion except that the TISKIT uses objects and the TASKIT uses word cards.

Another therapeutic technique used in psychotherapy to help children is the mutual storytelling technique developed by Gardner (1993).In this approach, the therapist listens to a self-generated story told by a child. The therapist then interprets the psychological significance and retells the child’s story implementing a healthier version. The aim is to assist the child in avoiding an anxiety-provoking experience. In his discussion of story drawing, Brandell (1988) reported that –most children can participate in self-regulated storytelling, but some might find

the task daunting and filled with anxiety. For these children, he suggested staying away from methods that are highly structured and formalized, instead implementing drawing and imaginative storytelling techniques that guide the child through the storytelling process.

Winnicott (1971) and Tanaka (1995) implemented some of these approaches. In the

Squiggle Game developed by Winnicott, an image is generated from squiggly lines drawn by both the therapist and the child, who each construct an image from the other’s squiggle drawing.

The squiggle is produced with the eyes closed. Gabel (1984) combined the techniques of

Winnicott (1971) and Gardner (1993), using drawing and storytelling to assist children having difficulty with traditional verbal therapy. The goal in this Draw-a-Story Game is not to eliminate verbal exchange with the use of drawing and storytelling but to initiate rapport so that verbal exchange is possible. The technique may also be used as an indirect assessment tool that provides information about the child’s psychological and emotional development. Explained in

Tanaka et al. (2003), the egg-drawing and cave-drawing art therapy technique developed by

Tanaka (1995) combines storytelling and drawing. In each technique, the therapist attempts to stimulate the child’s imagination through visual and verbal cues, which are used to encourage art expression and storytelling.

The imaginative nature of children promotes ease in the storytelling process. Their inquisitive minds involuntarily relate their stories to their lives (Gil, 1991).According to Gardner

(1993), children are most attracted to fantastical stories. They are not eagerly engaged in reality- based stories unless the unfolding dangers presented in the story are happening to another person or the characters doing terrible deeds. Children may be able to obtain interesting and useful information from realistic stories, but their minds have difficulty comprehending the way the story unfolds (Bettelheim, 1976).Moreover, it is expected that, if stories deal with the current

issues of the child, the child is more likely to be drawn into the story itself (Gardner,

1993).Stories ignite the imagination, permitting potential for new ideas and reshaping old perceptions (Mallan, 1992).Just by modifying or reshaping what is said or written in a story, individuals can change how they see their lives, and by restructuring these narratives, individuals can open new possibilities for behaviors and relationships with others (DeSocio, 2005).

Although children begin to remember and learn through the process of storytelling, sharing the story is empowering (Schwartz, 1987, as cited in Mallan, 1992). Mallan noted that telling a story can result in increasing one’s confidence and self-esteem. She continued that even the shyest child can be affected by storytelling. The experience of telling the story to someone else gives the child with a satisfying feeling that produces acceptance of the story and self.

Narrative Therapy

Narrative therapy is largely associated with Michael White and David Epston (Carlson,

1997), who found that stories help individuals make sense of their lives, as well as provide a way for expression. White (White & Epston, 1990) came by this notion by taking a constructivist perspective and assuming that behavior is determined by the meaning that individuals ascribe to an occurrence, “by their situation in social structures, and by the language and cultural practices of self and relationships that these lives are recruited into” (p. 35). According to White and

Epston, a successful story-telling experience will give the individual a sense of flow and aim in his or her life. With the tools of continuity and meaning, individuals are able to make decisions about how to sequence their daily lives and explain other experiences. Furthermore, if an individual accepts these notions, White and Epston argued that the stories shape the individual’s life and relationships. Thus, White and Epston proposed using narratives in therapy to help people with problematic experiences.

To begin to understand White and Epston’s (1990) rationale for using narratives in therapy, it might be helpful to visit their general assumptions. White found that, upon entering therapy, individuals experience problems when the stories they experience and the stories they are told by others do not adequately portray their lived experiences. In this situation, one’s lived experiences will outweigh the dominant narrative or story of the person’s life. White and Epston reported that individuals must learn to recognize that they have probably experienced life without the identified problem that brought them into therapy and it may be through narrative therapy that the they are able to identify this possibility (White &Epston, 1990).

To help individuals with an identified problem, White (1993) proposed using what he called deconstruction:

Deconstruction has to do with procedures that subvert taken-for-granted realities and

practices: those so called truths that are split off from the conditions and the context of

their productions: those disembodied ways of speaking that hide their biases and

prejudices: those familiar practices of self and of relationship that are subjugating of

persons’ lives. (p. 34)

In short, deconstruction is an attempt to breakdown the life experiences of individuals to help them recognize that they once lived without the identified problem or they once dealt with the problem (Abels & Abels, 2001). White suggested that deconstruction allows individuals to become aware of which circumstances and cognitive processes shape their lives and helps them to recognize that they have the capability of selecting an alternative path and changing their ways of thinking.

Individuals organize their lived experiences to help make sense of their lives (Abels &

Abels, 2001). The experiences are defined as stories or narratives that are meaningful and

encompass the spectrum of the individuals’ lives. Beginning to internalize some of the lived experiences may lead individuals to believe that a problem dwells internally (Carlson, 1997).

White and Epston (1990) called the problems that seem to overwhelm individuals dominant stories. These stories seem to take precedence over other, more numerous, lived experiences.

To deal with the dominant stories, White and Epston (1990) concluded that the individual must recognize that the problem is the problem and then externalize it. Externalization provides individuals with a way to separate themselves from the problem and to see themselves from a new perspective, in turn, creating a new, more attractive story (White &Epston, 1990). To help with externalizing the story, White and Epston suggested reviewing “unique outcomes” (p. 15).

These outcomes are past and present (de Shazer, 1991, as cited in Carlson, 1997) life experiences that exclude the problem or identify how the problem was resolved (White &Epston, 1990;

Carlson& Erickson, 2001). The individual’s ability to place the problem outside of himself or herself makes the problem objectifiable, separating it from the self. Doing so allows the individual and family members to deal with the problem, rather than placing the problem with the individual (White, 1993). The main goal in narrative therapy is to make certain that an identified problem is not associated or attached to an individual, but that the individual recognizes the identified problem is just that—a problem.

Bibliotherapy

Throughout the literature reviewed for this research, bibliotherapy and poetry therapy were often combined, with bibliotherapy being the primary topic and poetry therapy secondary.

Bibliotherapy is defined as the therapeutic use of literature to assist in the healing process.

Through the help of the facilitator or therapist, the client uses the literature to assist in exploring his or her feelings and cognitive responses (Hynes & Hynes & Hynes-Berry, 1986). For Abrams

(1978), a patient’s interaction with the literature through the direction of the therapist reduces fear and confusion, helping the patient to perceive his or her feelings.

Since ancient Greece, books have been identified as healing agents (Pardeck, 1998).

However, it was not until World War I that the term bibliotherapy was coined (Rubin, 1978).

Grounded in library services, with much credit going to John M. Galt, the first American to publish a book regarding the use of literature through therapeutic means (Moody &Limper,

1971), bibliotherapy is used as a therapeutic mean

According to Rubin (1978), bibliotherapy has three purposes: education, recreation and amusement, and identification of self through social interaction. The educational aspect of bibliotherapy involves participants using reading as a way to gather information, to promote outside interests, to engage with the outside world, and to gain more perception regarding one’s personal issues. The recreational aspect of bibliotherapy involves using the literature as a satisfying component. Finally, bibliotherapy should assist in provoking self-identification through interactions with group members.

Hynes and Hynes-Berry (1986) identified four steps to bibliotherapy: recognition, examination, juxtaposition, and self-application. Recognition involves an awareness of something in the literature that captures the attention of the participant through personal understanding of an experience or through another individual. The goal is to have the individual recognize feelings or emotions within the literature. For example, one might acknowledge the feeling in a story by saying, “I felt the same sadness of the little girl when her mother died. ”In this part of the therapeutic process, the therapist asks questions about the literature or poem, with no wrong interpretations.

Explanation entails going beyond feelings or recognition of feelings and moving into exploration of the feelings. “What do they mean to us?” “When was the moment you felt that way?” “How did you interpret that situation?” The who, what, when, where, why, and how questions are asked here, with participants probing their own responses to the literature as they relate to their personal experiences (Hynes & Hynes-Berry, 1986).

After examining one’s feelings regarding a piece of literature, an individual might compare two views of an experience or object by using what Hynes and Hynes-Berry (1986) call juxtaposition. One view is the participant’s object or experience, and the other view is based on a shared experience as expressed in the literature. Suing juxtaposition may involve identifying with a particular character, situation, or concept found in the text or with the feelings or concepts that result from group discussion. The comparison of the two concepts—old and new—compels the individual to take a more in-depth look at the issues surrounding his or her situation and may assist in modifying how he or she views a particular experience or concept. With the literature being used as an examining agent, the client may be able to find more appropriate ways of dealing with his or her issue. The final issue identified by Hynes and Hynes-Berry (1986) is self- application, which involves the reviewing of information learned about oneself and actually applying what one has learned. The client again uses dialogue to answer questions that help him or her recognize the similarities and differences between the literature that was read and the individual’s experience.

The job of the poetry therapist is to find poems appropriate to clients’ dilemmas (Leedy,

1969), including topics that relate to the group, suggestive tone, images, and metaphors

(Gorelick, 2005). Clients are coached on listening skills and asked to read the poems aloud. The purpose of reading aloud provides the client with the opportunity to experience the tempo and

patterns found in the poem. Paying attention to the words in the poem promotes healing (Leedy,

1969), as well as provides a voice like that of a story (Gorelick, 2005).According to Leedy

(1969), the poems that seem be the most useful to those in therapy are those that resemble the clients’ emotional moods. For example, a client who is abusing alcohol might be helped with a poem that describes the reasons why someone chooses to drink and what it takes away while also describing feelings and results associated with being sober.

Art Expression and Development in Children

According to Silver (2001), individuals use art as an alternative means of expressing different feelings, rather than using verbal communication. Art also allows the individual to fantasize, tapping into one’s subjectivity. Lusebrink (1990) asserted that meaning and emotions are expressed through images. When visually represented in concrete form, the images express one’s internal visual perceptions. Self-identification is present in all art expression, whether it is expressed through the actual experience or through art materials (Lowenfeld & Brittain, 1987).

Lowenfeld and Brittain (1987) asserted that art is different for children and adults. Adults focus more on the aesthetics or external beauty in the images presented to them in paintings, sculptures, and other forms of artistic expression. Children, on the other hand, use art as a key resource for expression. When children draw, they reveal feelings, fantasies, and wishes

(Golomb, 2004). Their drawings open a “window” to their thoughts and feelings (Thomas &

Silk, 1990).Children’s drawings not only reveal something about them but also indicate how they solve problems (Goodnow, 1977).

Many practitioners have studied the drawings of children and their art development.

According to Golomb (2002), studies on these topics began at the turn of the 20th century with the production of child art exhibitions and publications of children’s drawing development,

which had a major influence on the movements in art, art education, and psychology. Within the arts, realism and perspective were challenged with the introduction of various artistic styles, such as cubism and impressionism. Art educators would affect the era by maintaining that child art should be respected for its beauty and its language.

Many practitioners played a role in the psychology of understanding children’s drawings and the development of drawing stages. Influences in understanding child art and its developmental stages, according to Kelly (2004) include but are not limited to Franz Cizek, an art educator who coined the phrase child art; Corrado Ricci, who is credited as the first to organize a collection of children’s drawings; George Kershensteiner, who organized children’s drawings and grouped them into stages; George Rouma, who observed children creating drawings and identified stages; G. H. Luquet, the first to study a child’s art work over time and place the works into different stages; Karl Buhler, who focused on the perception, memory, and imagination of the child as well as examined child art development; Florence L. Goodenough, who shaped research by using children’s drawings as an assessment tool to evaluate cognition;

Helga Eng, who studied her niece’s drawings, said to be the earliest study of its type to capture the drawing development of a child, beginning with the first scribble; Jean Piaget, who believed in the notion that play and drawing were both part of assimilation, a process by which children use their fixed notions to comprehend new stimuli; Robert Cole, who used children’s drawings as a way of getting to know them; Victor Lowenfeld, who identified stages of art development and growth; and Rudolf Arnheim, who has influenced the field with his views on space representation.

According to Lowenfeld and Brittain (1987), a child’s development in art transforms as he or she develops and grows. These changes are predictable, but do not have finite starting or

ending points. There are many common characteristics to the various art development stages as well. Scribbling is one such characteristic; it is the building block of children’s art (Kellogg &

O’Dell, 1967). A scribble, which is first drawn around the age of 2 and is abandoned at about the age of 4, is generated when a child uses a drawing instrument to make random markings on a sheet of paper (Lowenfeld & Brittain, 1987). According to Luquet (1913/2001), who called this stage of art development as fortuitous realism, these markings do not represent an image but are an act of just making marks. If this is the case, these markings gradually become identifiable, taking on a loose form of images represented in the child’s environment (Lowenfeld & Brittain,

1987).

The primordial circle, as it is referred to by Arnheim (1954), is the child’s first organized shape that develops into human representation. The formation of the circle and other shapes begins at about the age of 4 (Kellogg & O’Dell, 1967). Over time, the child eventually begins to add lines, suggesting arms and legs. The child may identify this human representation or tadpole man as either an individual or an animal (Golomb, 2004). Whether exhibited with or without arms or legs, an emotional experience appears to be expressed by the child’s first human representation (Kellogg, 1979).

As children get older, their hand-muscle coordination begins to develop, permitting them to begin adding detail to their drawings (Kellogg, 1979). Identified as failed realism by Luquet

(1913/2001) and the preschematic stage by Lowenfeld and Brittian (1987), this stage appears to include creating representational images of people and things in the environment. These images are random in size and are scattered sporadically on the page (Lowenfeld & Brittain, 1987).

During this time, the drawings of children aged 4–7 (Lowenfeld & Brittain, 1987) become more real and increase in realism as they get older (Thomas & Silk, 1990).

According to Luquet (1913/2001), in the failed realism stage, children want to produce realistic images but are incapable of doing so. Instead, they are learning how to control their bodies and drawing instruments to achieve the desired image. Furthermore, Luquet contended that, at the onset of this stage, the way children create their drawings may appear awkward and even perplexing, but as time progresses, their abilities improve. For Arnheim (1974), this time of development includes two-dimensional and three-dimensional representation of pictures, with three-dimensional representation being depicted as two-dimensional. The space that surrounds an object or that is within an object is seen as being the same distance from the observer. For example, a wall and a person are presented as having the same depth when drawn, rather than showing a flat wall and a three-dimensional person. Some researchers identified this phenomenon as transparency or x-raying (Lowenfeld & Brittian, 1987; Luquet, 1913/2001), but

Arnheim (1974) refuted this notion, asserting that the child is drawing a two-dimensional likeness of what he or she observes in the environment.

At this pictorial stage, children begin to draw people and move toward creating animals with the same likeness, adding ears to the top of the head to make the distinction (Kellogg &

O’Dell, 1967). Drawing is the main focus of the child during this stage of art development rather than presentation. It inspires relationships and clarifies vague thoughts (Lowenfeld & Brittain,

1987).

Another characteristic that appears to mark a new stage of child art development is the introduction of perspective, proportion, and distance (Piaget & Inhelder, 1967). Luquet

(1913/2001) identified this stage as visual realism. During this time, the unreal drawing capabilities of children become more real, and what they create is represented in detail and in relationship to other elements. Drawings also become more organized and structured (Lowenfeld

& Brittain, 1987). This transition begins at about age 7, 8, or 9, depending on the developmental model and the child (Lowenfeld & Brittain, 1987; Luquet 1913/2001).

During this time, the child develops a schema or symbol for drawing human figures and other recognizable elements (Lowenfeld & Brittain, 1987). According to Cizek (Viola, 1949), in this abstract-symbolic stage, the child’s consistent symbol representations is an indication that the child has entered into a more knowledgeable stage as a result of becoming closer to nature and gaining more experience. The experience and knowledge gained lead to greater detail in the child’s work (Kelly, 2004; Viola, 1949).

At ages 9 or 10, children’s drawings become conventional and predictable, and their interest in drawing may begin to dissipate (Gardner, 1980, as cited in Thomas & Silk, 1990).

This lack of interest may occur because of negative influences by an adult who wants the child to conform to traditional art norms (Kellogg & O’Dell, 1967), or lack of interest could occur because of not achieving the desired outcome (Gardner, 1980, as cited in Thomas & Silk, 1990).

However, Koppitz (1968) claimed that these nonartistic children may return to drawing as a form of communication in times of distress and when they cannot describe verbally conscious and unconscious anxieties and conflicts. An example Koppitz provided is that of her work with older children in psychotherapy. She reported that children who were slow to engage in verbal communication regarding themselves and their issues were more willing to draw or paint. As they began to progress and develop assurance, they moved away from the art media toward more verbal expression. However, if children regressed or experienced a setback, they went back to using drawing as a form of communication. Kellogg and O’Dell (1967) asserted that drawing development of children is universally the same; how they draw, what they draw, and the age for which particular elements are drawn are identical in countries throughout the world.

Along with the interest in child art and development came interest in what a child’s art says about him or her, and with this interest came the induction of intelligence measures and projective drawing tests. One influential figure in studying children’s drawings to measure intelligence was Goodenough, who wrote the book Measurement of Intelligence by Drawing

(1926), as cited in Koppitz, 1968). Guided by the presumption that children’s drawings could identify their cognitive capabilities, Goodenough (1926) devised an intelligence test from the human figure drawings of children (Golomb, 2004). This drawing measurement, commonly referred to as the Draw-A-Man Test, reviewed the human figures children drew to identify specific characteristics that occurred in their drawings as they aged and as their intellectual capabilities developed. More specifically, children were asked to draw a “picture of a man” using their best effort. Testing hypothesis indicated that the test could be used complementary to other standard intelligence test (Goodenough, 1926).

Machover (1949) was one of the first to suggest exploring a child’s personality by using human figure drawings through projective drawings (Golomb, 2004). According to Machover, when individuals draw a human figure, they take what they need from various sources because the physical image of a person is made up of many components to elicit a “a spontaneous, composition, objective representation of a person” (p. 5). Instead, individuals use projection and introjections to create an image on paper, drawing from that which they are aware and from those things that are hidden in the psyche. Therefore, how the individual perceives the human figure must, in some manner, lend itself to how a person draws a specific structure and what elements comprise what that individual perceives to be “a person.” In this drawing test, participants were asked to draw a person and then draw a person of the opposite sex (Machover,

1949).

Similar to Machover (1949), Koppitz (1968) devised a children’s projective drawing test to measure personality, which he calls the Human Figure Drawing Test (HFD). The assumption of his work was that the person drawn by a child would be constructed using a particular style and basic arrangement that was specifically related to the child. Like Machover’s drawing test,

Koppitz’s test asked children to create a human figure; however, the child was only asked to create one drawing rather than two, and he or she had a choice of which sex to draw. In addition, instead of being asked to draw a person, the child was asked to draw a “whole” person, avoiding stick figures and cartoon characters. By asking the child to create a whole person rather than a specific man or woman, Koppitz believed that the child was likely to look “within” himself or herself to generate what he or she viewed to be “a person.” According to Koppitz, the test can be given to either a group or an individual, but individual examination is preferred.

A crucial distinction between the work of Koppitz (1968) and Machover (1949) is that

Koppitz’s HFD test introduced a scoring system that took into account the child’s developmental level and emotional indicators presented in the child’s drawing. Developmental indicators were items that arose infrequently on the HFDs of very young children but increased in the number of times they occurred as children got older, until the identified item became a standard characteristic presented in the HFDs of a specific age level. The emotional indicators were used to distinguish the works of normal children from those with emotional problems. They were to be distinctive and uncommon in the HFDs of normal children, and the age and maturity of the children could not be a sole indicator.

According to Thomas and Silk (1990), one of the assumptions that comes from the works of Machover (1949) and Koppitz (1968) is that children will highlight features in their drawings that they find to be important. These two individuals were not the only ones to maintain this

notion: Lowenfeld (Lowenfeld & Brittain, 1987) did so as well. He reported that the unconscious feelings of children will occur in their art work through emphasis indication. For example, when discussing a child’s picture of herself standing in the backyard that represented her touching the sky and being taller than a tree (Lowenfeld & Brittain, 1987, p.275), he reported that the grandiosity of the figure was due to the child’s developmental stage in which the emphasis is on the self. Children with impairments, he claimed, will emphasize the ailing part of their bodies; calling attention to whatever is ailing them, such as drawing a broken arm or an aching stomach.

Art Therapy

Art therapy is a therapeutic modality (Wadeson, 1980) that uses visual self-expression

(Betensky, 1995), communication, and insight to assist individuals in therapy (Coleman &

Durfrene, 1996). It is used to help individuals learn more about themselves, modify their behaviors, and repair emotional problems (Malchiodi, 2005). Framed in art, psychology, and therapy, this modality emphasizes the therapeutic relationship of client and therapist (Wadeson,

1980), as well as placing emphasis on art as therapy or art psychotherapy (Lusebrink, 1990).

Pioneered by Naumberg (Wadeson, 1980) and influenced by the work of Ulman, and

Kramer (as cited in Lusebrink, 1990), art therapy is conducted with children, adolescents, and adults of varying mental, behavioral and developmental levels and is also used in group and individual setting in hospitals, schools, mental health facilities, and other arenas (Rubin, 1984).

Using art as the primary means to help individuals, art therapists use a variety of art media to promote conscious awareness. According to Lusebrink (1990), “[T]he physical manipulation of the material and the conscious thought processes involved contribute to control” (p. 10).

Furthermore, information presented in the art work is considered a form of communication that may be manifest or latent. Based on the theories of psychoanalysis, this information resides in

the conscious, preconscious, and unconscious parts of the mind (Rubin, 1984). According to

Lusebrink (1990), the inner (conscious) and outer (unconscious) realities are facilitated through this visual expression, allowing the media to be used symbolically. The primary objective for the art therapist then is to bring that which is unconscious or hidden (Rubin, 1984) into conscious awareness (Dufrene, 1988, as cited in Coleman & Dufrene, 1996). Art therapists attempt to accomplish this task by helping the client recognize other possibilities through the processing of artwork (Wadeson, 1980).

During the process of creating art work and through each therapy session, the art therapist attempts to maintain a therapeutic relationship with the client. In this relationship, the art therapist attempts to provide the clients with what they have not experienced, for example, making the client feel accepted by being nonjudgmental and understanding (Wadeson, 1980).

Through art expression or visual language, art is used as a way to express one’s thoughts and feelings and pictorially express experiences that are difficult to express in words. These experiences may include such things as the loss of a loved one, surviving rape or incest, or other traumatic events (Malchiodi, 2005). One does not have to draw his or her experience literally because the art can be used to communicate metaphorically (Riley, 1997).

Overall, the art therapist attempts to help the client use visual self-expression, communication, and insight in dealing with therapeutic matters. Whether focusing on process or the product, the primary goal of art therapists is to help clients bring that which is unconscious to the forefront to help with identified problems.

Disfigurement and Child Development

What we consider to be beautiful is ever changing, but what has not seemed to have changed is the yearning to appear desirable. From an early age, the term beautiful is defined for

people. Individuals come to understand its meaning by what people say and the description provided by society (Graydon, 2004). For example, a celebrity such as Madonna has been defined as beautiful while a celebrity such as Flava Flav might have difficulty being defined as such because he does not fit into the typical mold of what society views as beautiful. What society defines as beauty is taught, and how it is distinguished from its counterpart—ugly or grotesque—often defined in how someone looks and how others respond, determines whether one lives happily ever after and indicates whether an individual is good hearted and forgiving

(Graydon, 2004).

According to Blumberg (2009), throughout history, individuals who are seen as odd and grotesque have been called freaks and monsters by the elite. These words have become common place and identify how society has become overly enthralled with the unexplained, odd, or unusual. It also identifies how society has distorted that which is perfect rather than discussing those who are disfigured themselves. Blumberg (2009) further asserted that, when the words freak and monster are attached to those who are visibly different, society attempts to separate itself into two categories. The freaks are in the they category and those in the us category are the ones who came out of their mother’s womb perfect, with 10 fingers, 10 toes, nothing missing or in the wrong place. In essence, the doctors, nurses, and family are not shocked at what they see because the child came out looking normal (Blumberg, 2009).

Bradbury (1996) asserted that a child with a disfigurement is not born with the awareness that he or she is visibly different; the process is learned over time. Early in life, infants are capable of recognizing individuals, especially those who are familiar, such as their mothers.

Concerning the mothers of these infants, some may perceive themselves as satisfied with their lives and parenting skills but, in fact, have difficulty with nurturing and interaction and are

unaware of their actions (Barden, Ford, Jenson, Roger-Salyer, & Salyer, 1989). Around the age of 3 or 4, children begin to identify disfigurement in others and will point out another’s imperfection and inquire about individual differences (Frances, 2004).

As visibly different children move away from infancy toward toddlerhood and preschool age, they maintain focus on themselves and their family, exhibiting few signs of being affected by their visible differences (Beuf, 1990). However, children of this same age group appear to prefer attractive peers over unattractive ones. In a study conducted by Dion (1973), children between the ages of 3 and 6 were shown facial photographs to determine whether they showed stereotyping based on facial attractiveness. Results indicated that, when asked to identify children they would like as friends and children they would not like as friends, children preferred attractive friends and disliked unattractive children.

Although children may choose attractive friends over unattractive ones early in childhood, stereotyping of the disfigured may not begin until late childhood. Rumsey, Bull, and

Gahagan (1986) conducted research on children aged 5–11. Children were shown before and after photographs of adults with facial deformities and asked to attribute positive or negative characteristics to them. Results indicated that young children chose at chance level while, 75% of the time, 11-year olds were more likely to couple positive characteristics to the after photographs and negative characteristics to the before photos, thus indicating that, as children increase in age, they are more likely to begin stereotyping.

When children reach ages 7–9, they can suffer most from teasing and begin to find it troubling, for their cognitive skills are not developed enough to handle effectively the verbal attacks of others (Bradbury, 1996; Rumsey &Harcourt, 2005). This teasing may increase feelings of vulnerability and of being an outcast for the child who is visibly different (Bradbury, 1996). It

might also lead to bullying, which is a repetitious act done by an individual or a group attempting to isolate, do bodily harm, or verbally abuse another by exhibiting power (Bolton & Graeve,

2005). Sheras (2002) suggested that explaining what happened in a bullying or teasing incident can be difficult for young children or the child may simply be unaware that he or she should inform an adult. Instead of reporting what has occurred, as Sheras (2002) asserted, children and adolescents avoid telling because of feelings of fear and shame.

Two processes of development of self-consciousness occur through childhood: social and cognitive (Changing Faces, 2001). Cognitively, the child will start to apprehend that his or her physical feature is unlike those of others and associate the difference with self (Bradbury, 1996).

Socially, visibly different children will become keenly aware of the responses of other people regarding their anomalies (Frances, 2004).

Body image for a child who develops normally is likely to be different from that of the disfigured child, to some extent, because of what society deems appropriate. Unfortunately, physical appearance influences how society will react to an individual. Size, color, and overall appearance can determine whether the individual is accepted or rejected. This evaluation of the body leads to the development of body image, “one’s perception and attitude in relation to one’s own physical characteristic” (Cash & Fleming, 2002, p. 455). When discussing body image, considering appearance and disfigurement is essential (Newell, 2000).If the visibly different individual is very self-conscious about his or her appearance, increased attention is focused on the anomaly, so much so that the anomaly becomes the most important characteristic of the individual’s appearance. The assumption made by the child is that the first thing anyone will notice is the disfigurement and that others will begin to make judgments regarding these features

(Bradbury, 1996). Houston and Bull (1994) found that other individuals’ behaviors are modified

by that of the disfigured individual. In Houston and Bull’s study, individuals sat farther away from those who were visibly different and closer to those without a disfigurement. The researchers also indicated that individuals have more difficulty looking at others with disfigurements in the eye-mouth “communication triangle” as well as malformations that occur around the ears, hands, neck, and scalp areas (Frances, 2000).

As disfigured children move into adolescents, more difficulties may arise. During this time, the child may experience a change in school, which may mean new forms of teasing, more competitiveness among peers, and less protection from the environment. While experiencing a change in school environment, the child may also experience a change in body image. For disfigured children, this change may intensify feelings of dissatisfaction about the body. It is a time when adolescents long for friends in which to confide and family becomes less important.

As the body is developing, there is also sexual development. For disfigured children, the onset of sexual development may lead to further body image issues, such as dating (Bradbury, 1996).

According to Smith, Liviskie, Nelson, and McNemar (1977), it is possible to assist a child who has acquired a disfigurement through accident or disease in reestablishing his or her body image; however, one must first be able to recognize the stages that the child might exhibit: the global stage, the stage of differentiation, the stage of articulation, and hierarchic integration.

In the global stage, the child makes no distinction between his or her anomaly and his or her other body parts. The feeling, function, and appearance of the disfigured anomaly are no different from those of the other functioning body parts. For example, an individual who has had a leg amputated may continue to feel his or her leg even though it is no longer attached to the body. In this stage, a child may begin to experience regression, passivity, and denial.

In the stage of differentiation or the “what” stage, according to Smith et al. (1977), the child is able to define or distinguish his or her anomaly from his or her other body parts. He or she is able to recognize the difference in how the disfigured body part feels, functions, and appears in relation to other body parts. In the “how” or articulation stage, children begin to ask about or try to comprehend how they are going to bring together their changed and unchanged components. At this stage, children begin to analyze and master their sensorimotor skills. They also begin to match their experiences with what has happened to them. It is at this point they gain understanding.

Smith et al. (1977) asserted that, in the final stage of hierarchic integration, children view themselves as being put back together or whole and return to the norm of their everyday lives.

Doing so does not necessarily mean that the child feels “normal” but that he or she wants to return to things he or she is used to doing, such as attending school. The stages identified above might also resemble the stages of grief and loss identified by Kubler-Ross (1997) because an individual having difficulty with his or her change in physical appearance may become socially isolated and go through a process of bereavement. These stages include denial and isolation, anger, bargaining, depression, and acceptance (Millstone, 2008).

Storytelling and Children with Visible Differences

Using storytelling to assist children with disfiguring conditions is not a new concept.

Storytelling has been used as a method to cope with cancer (Noll et al., 1999), and it has been used with child burn victims as a way of helping them to deal with pain (Schubert-Walker&

Healy, 1980). Storytelling has been used as a linguistic tool to help understand language development of children with cleft palates (Pamplona, Ysunza, Gonzalez, Ramirez, & Patino,

2002). It has also been used to help child amputees (Atala & Carter, 1992; Smith et al., 1977).

In addition, books have been written specifically for children with visible differences, including Rosie . . . the Imperfect Angel by S. L. Deckinpah, for children with a cleft palate; The

Making of My Special Hand by J. R. Helan, for children with prostheses; and Lizard by D.

Covington, a book on deformity. Other books that are not specifically about deformity but about being different include The Color of My Fur by Nannett Brophy, in this story a bunny is disliked because of the color of his fur and Different is just Different by Karin Schwier, a story about a young boy who learns about the differences in other people.

According to Brandell (2000), the make-believe nature of stories seems to provide children with some reassurance that they are not divulging too much about themselves. From children’s perspectives, they are safely hiding the disturbing fact about themselves. This intentional hiding causes unintentional disclosure of one’s distancing conflicts, wishes, and secrets. The story is an unconscious manifestation of what the child may not want to reveal.

According to McNamee and DeCiara (1996), it is not a child’s words but rather what they draw and the stories they tell that help adults understand what they are trying to convey. Stories that entertain and provoke interest grab the attention of children. However, stories that help to improve a child’s life will spark the imagination; be representative of the child’s thoughts, feelings, and desires; identify some of the child’s challenges; and identify solutions to some of the problems the child is facing. A truly effective story will cover the entire spectrum of a child’s personality and give tribute to what the child is going through while boosting his or her self- confidence and outlook on life (Bettelheim, 1976).

Based on previous research, storytelling with visibly different children is largely used as a way of helping them verbally express their feelings regarding their anomalies, or it is used as a soothing or distracting device to help ease pain and provide comfort. I used this premise as the

basis for this research. This research reported here focused on generating a theory about the use of storytelling with children who are disfigured. Another area that examined here was that while storytelling is defined as oral expression of a real or imaginary event, it also includes written and pictorial expression of such events.

For the disfigured child, telling his or her personal story may be very difficult. However, this study examined whether a child would be able to do so in a supportive environment. In addition, I observed possible changes in self-esteem as children went through the process of creating a story.

Conclusion

Storytelling has been used throughout time to pass on information from one generation to the next. It has been used to put children to sleep, to develop literacy, and to soothe children during or after traumatic experiences. Storytelling has been used by therapists as a vehicle for understanding the issues of children and as a resource to help children learn healthier ways of coping. Through therapeutic intervention, problems individuals face can be externalized, and hidden thoughts and feelings may be revealed through oral, written, or pictorial representation using narrative therapy, bibliotherapy, and art therapy.

Each therapeutic modality is focused on helping individuals “verbalize” or “externalize” what they are feeling, whether it be through spoken words or pictures. Research findings have suggested that pictorial representation can help identify children’s creative and mental development, lived experiences of individuals can be externalized, and literature and poetry can help individuals see new perspectives to personal issues. In addition, it was found that there are some children’s books that specifically relate to an individual’s problem or even a visible

difference. The next chapter will present a qualitative research methodology for exploring the effects of storytelling with visibly different children.

CHAPTER THREE

METHOD

The purpose of this study was to generate theory from how visibly different children respond to inclusion of their visible difference in a story they created. It was predicted that participants would be hesitant to include their visible differences, but as the process of story creation progressed, their desire to complete the task would increase. It was further predicted that, after story completion, children participating in the study would be eager to share their stories with others.

This chapter will identify the research question and provide a brief overview of qualitative research and grounded theory. The chapter will discuss the procedures used in the research and describe data collection, analysis, reliability and validity. Within the section of data collection the research will discuss interviewing, observations, audio- visual materials and memo writing. In the reliability and validity sections of this chapter the researcher will discuss the meaning of triangulation, member checking and thick description.

Research Question

The research question to be studied was:

How will visibly different children, with a low self-concept, respond when asked to create, illustrate, and tell a story with a focus on their visible difference within the story context?

Qualitative Research

The design selected for this study is qualitative in nature and was used to research the question of how children, who are visibly different, respond when asked to create, illustrate, and tell a story about themselves using their disfiguring attribute in some manner. Strauss and Corbin

(1998) identified this type of research as a nonmathematical process by which theory is generated through concepts identified in research data. These data may explore well-known or minute phenomena through such methods as interviewing, observations, and documentation.

Qualitative researchers investigate the quality of a phenomenon while providing a detailed description of the happenings in that environment (Fraenkel & Wallen, 2003).

According to Patton (2002), to analyze the data, researchers using this method typically conduct fieldwork, which provides a direct account of the phenomenon. Fieldwork allows for hands-on experience of the environment being studied and allows the researcher to engage actively with the individuals in that environment. It also allows for in-depth study of people’s daily lives and promotes both physical and social closeness between participants and the researcher. Physically, the researcher works in close proximity of the participant, and socially, the researcher has the opportunity to share experiences with participants as well as identify with them. Rossman and Rallis (2003) identified eight characteristics common to qualitative research:

1. Qualitative research should be conducted in the natural setting of participants. Here,

the focus is on gathering empirical data from the participants and the researcher in the

natural environment of the phenomenon.

2. Qualitative research uses multiple methods to gain an understanding of the

individuals being studied. In this process, the researcher uses various data-collecting

processes, such as interviewing, observations, and documents.

3. Qualitative research focuses on content. Doing so entails understanding the human

experience through the exploration of people’s lives in a holistic manner.

4. Qualitative research involves systematic reflection. In this process, the researcher

reflects on how his or her presence affects the research environment and how he or

she is affected by the research being studied.

5. Qualitative research involves being sensitive to one’s personal biography. In this

reflection, the researcher reviews his or her own morals, values, and other personal

elements to determine how they may influence the research.

6. Qualitative research is emergent, meaning that information gained through data

collection may lead to more knowledge, which may subsequently lead to new

questions.

7. Qualitative researchers should use complex reasoning, which includes inductively

reviewing the research data repeatedly and in a variety of ways.

8. Qualitative research is interpretive. What the researcher learns regarding the study is

based on interpretation and description that uses a systematic method for making

decisions about data, collecting data, and about the meaning of data.

The purpose for using qualitative research in this study was to examine the participants in their natural settings and to conduct open-ended observations and interviews. Using qualitative research also allowed the researcher to explore emergent data during the research process

(Creswell, 2003). Furthermore, qualitative research allowed the researcher to obtain the perspective of the participants and discuss the findings as a way of checking the data (Patton,

2002).

Grounded Theory

The researcher explored data collected during the research process and then attempted to draw a hypothesis or theory from the information gathered. Glaser and Strauss (1967/2006)

identified this method of research as grounded theory, systematic data collection retrieved from social research to discover or generate theory. The development of the theory began as the two sociologists studied dying people in hospitals (Glaser &Strauss, 1967/2006).The strategies they used in this research were coupled with the idea that theory could be discovered inductively through research gathered from data (Charmaz, 2006).In this approach, the researcher uses comparative analysis to generate theory. The study includes an individual or extends to a group, an organization, a nation, or beyond. To proceed with comparative analysis, conceptual categories are developed. These categories are generated through evidence, which is then used to demonstrate the concept (Glaser & Strauss, 1967/2006).

The framework of grounded theory includes description, conceptual ordering, and theorizing (Patton, 2002; Strauss & Corbin, 1998). Description is a depiction of an account that is provided by a person through words that provide a mental image, such as an experience, emotion, or event. For example, in response to watching a movie, one might say, “As I sat in the movie theater, I began to cry as the little girl took her last breath.” The words describe a place, an emotion, and an event. In conceptual ordering, data is organized into specified categories that have been defined by particular properties and dimensions. A conceptual-ordering task might entail grouping students based on their school GPAs or identifying them by their social classes. It might also encompass ordering actions of particular depictions. For example, an instructor might order the actions of how children respond to a particular movie or videogame. Theorizing includes conceiving concepts and formulating those concepts into a reasonable, organized, and descriptive format. It is an attempt to elaborate and refine categories within the emerging data

(Charmaz, 2006), thereby controlling emerging theory (Glaser & Strauss, 1967/2006).

In grounded theory, information is separated, sorted, and synthesized through qualitative coding. In this process, divisions of data are given labels that identify the subject matter of each division (Charmaz, 2006). There are several coding methods, but each begins with line-by-line analysis to formulate categories and identify relationships within such categories (Strauss &

Corbin, 1998). Grounded theorists frequently carry out incident-by-incident comparison and then compare incidents to the concepts (Charmaz, 2006).

According to Strauss and Corbin, (1998), when conducting grounded theory the researcher should have the following:

1. The ability to step back and critically analyze situations

2. The ability to recognize the tendency toward bias

3. The ability to think abstractly

3. The ability to be flexible and open to helpful criticism

4. Sensitivity to the words and actions of respondents

5. A sense of absorption and devotion to the work process. (p. 7)

The use of grounded theory in the research presented herein helped the researcher maintain order and sensitivity while reducing personal perspectives. It also allowed the researcher to compare incident by incident (Charmaz, 2006), using an open inductive approach (Patton, 2002; Strauss&

Corbin, 1998).

Participants

The participants in this study were two visibly different children, ages 10 and 12, participating in in-patient services at a mental health hospital in the mid-west. Children selected to participate were individuals having difficulty with being visibly different and identified by a mental health provider as needing assistance in improving their self-concepts. The inclusion

criteria for identifying participants allowed that children could have been from any disfigurement category identified by Bradbury (1996): congenital, traumatic, and physical treatment. Both participants in this study had congenital disfigurements.

The intake director selected the two participants for this study. As the children were evaluated for inpatient acute services the director determined whether or not the participants would be a good fit for participation in the research. The participants had to have one of the three disfigurements discussed above, a low self-concept, permission from a guardian to participate in the study, and a willingness to participate themselves. After the director identified perspective participants she spoke with them briefly about participation in the study. If the participant and his or her guardian were interested in participating in the study the researcher was then contacted to discuss participation. If the participant and guardian agreed to participation in the study then each was asked to sign a consent form, which identified the purpose and risks associated with the study. It is important to note that each participant entered inpatient treatment needing acute services, which meant that they felt like harming themselves or another. Participants of this study met the criteria for residential treatment. This meant that the participants were no longer an acute threat to hurting themselves or another and were moved to a less restrictive environment when he or she participated in the study.

Two participants were selected for this study. The first participant, ZJ, was a ten year-old male who had a cleft palate. He lived with his mother, her boyfriend and two younger siblings.

ZJ had been inpatient several times prior to the current hospitalization for harm to self or another. He reported being teased about his cleft lip and for the way he spoke. He acknowledged that he used verbal and physical aggression toward others as a result of teasing related to his

visible difference. ZJ had a small frame and was very petite. When he spoke he was difficult to understand and the researcher had to often ask him to repeat himself.

The second participant CR was a 12 year-old male who lived with his grandmother. CR had also been an inpatient several times prior to entering the research hospital. CR unlike ZJ had a very pronounced malformation of the face. He often covered his face with his hair and hand.

His eyes watered often and his nose often drained due to issues related to his visible difference.

CR also indicated that he was teased often about his looks and that he was verbally and physically aggressive with others as a result. CR was a tall child with a medium build. He was very verbal and often responded by saying “I know.”

To investigate the effects of storytelling on visibly different children with low self- concept, participants were asked to construct and tell their own stories, using their visible difference as the primary focus of the narratives. Children were selected from a convenience sample of referred volunteers who met the research criteria of the study. References were obtained from a qualified mental health professional, who identified the children as having low self-concepts and thought they needed assistance in improving how they viewed themselves. The health professional indicated that no psychological harm would come to the children because of participating in the study. Participants were interviewed and stories constructed individually. The interviews and storytelling processes took place in an in-patient setting on the hospital grounds.

Procedures

After obtaining consent from the children’s parents or guardians (see Appendix A) and prior to their participation in story creation, each child met with the researcher individually to familiarize the child with what was to take place in the study and to help them feel comfortable with the researcher and the process. They also read and signed a child assent form (see Appendix

A) which identified the research to take place, the risk involved and that the sessions would be videotaped. The video recordings were to be used to assist in monitoring the participants behavior as they participated in the research so that observers would be able to write down behaviors exhibited by the children.

After the initial meeting, the researcher met once again with the children, individually, to conduct semi-structured interviews. There were two types of semi-structured interviews for the children, and initial interview and an exit interview (see Appendix ? for the interview protocols).

The initial interview took place on the first day of story creation and the exit interview on the final day. Each interview was based on a list of specified questions to be answered by the child and allowed for conversation and probing of information gained through responses given by the child. The interview questions were phrased to try to identify how the children thought they were perceived by others, how they perceived themselves, and how they thought they responded to others when their visible differences played a role in how they were treated by others.

Participants were to participate two days a week for six weeks in a group setting.

The researcher also conducted a semi-structured interview with the parents or guardians of the participants to gain general background information about them and their visible differences (see Appendix C and D for the interview protocol). During these interviews, the parents or guardians were also asked about their child’s behavior at home, in school, and in other social arenas. This interview, like that of their child, consisted of probing questions to obtain further information.

Once the interviews were completed, the researcher guided the participants to write, illustrate, and construct a book using their visible differences in the story in some manner. The researcher led the participants in the story-making process by following a basic story-making

strategy that identified the major components of a story. These components included identifying a main character, choosing a setting, identifying a problem or conflict, resolving the problem, and concluding the story. In the story-making sessions, the researcher observed and recorded the participants’ behavior, affect, and overall experience of storytelling; identified patterns and themes; and then coded the findings. The researcher also looked for patterns and themes that occurred within each story context, then coded and analyzed the data.

Participants were provided with pencils, markers, crayons, and paper for creating stories.

A computer was also used in the story-creation process. The researcher used the computer to place the images the participates created into the computer. Once the images were placed in the computer, participants were asked to type in the story they created. No page requirement was specified for the narrative. Following completion of the book, each participant was asked to tell his story to family members.

During the story-making process, it was expected that children would exhibit some anxieties about using their visible differences within their stories; however, it was anticipated that these feelings would dissipate or subside as children progressed through the story-making process and would conversely have a positive effect on their self-concepts. Also expected during this process was that participants would want to tell their stories to others when their stories were completed. In addition to these expectations, the researchers personal views were anticipated because the researcher had a visible difference and had created a story implementing the suggested method for creating a narrative.

After stories were told, children were asked to participate in an exit interview. These interviews were semi-structured and inquired about the children’s storytelling experiences. All interviews were recorded and transcribed. After transcription, each interview was coded for

patterns and themes. Each storytelling session was videotaped and viewed by the researcher and two mental health professionals, individually and in a group. The professionals and the researcher recorded the behaviors of the participants, and these findings were viewed for patterns and themes.

To identify further whether any changes occurred in the participants’ behaviors and self- concepts as a result of creating a book, the behavior logs concerning how the children interacted during the day were viewed (see Appendix F for an example of a behavior log). Staff members of the facility who monitored the children throughout the day were responsible for completing the logs. Because of HIPPA laws, the information provided in the logs could not be repeated verbatim. Therefore, to maintain the privacy of the participants, only behavior-specific words were recorded from the logs. Three days were randomly selected, toward the beginning, middle, and end of the session. The staff observation was also used to control for the researchers personal lens.

Data Collection

Following the grounded-theory paradigm, the researcher attempted to discover theory by drawing from data collection, through comparative methods or simultaneous data collection and analysis (Glaser & Strauss, 1967/2006). This distinguishing characteristic that separates grounded theory from other qualitative approaches was conducted systematically (Strauss &

Corbin, 1994) by generating conceptual categories from facts that emerged from concepts presented in the evidence (Glaser & Strauss, 1967/2006).

Grounded-theory methods have been used to develop research in many areas. Williams,

Davey, and Klock-Powell (2003) used grounded theory methods in their research on burn survivors. Ohlen, Balneaves, Bottorff, and Brazier (2006) used grounded theory methods in

studying the familial effect of complementary and alternative medicine on cancer patients. In addition, McCormick and Macintosh (2001) used grounded theory methods when studying the homeless health experience, and Rydstrom, Hartman, and Segesten (2005) used some of the theory methods to study how teens manage their asthma.

In this present study, the researcher used the grounded-theory combined method of analysis to identify concepts related to visibly different children, their self-concepts, and their experiences of storytelling. The researcher identified concepts by identifying patterns and themes in the data and then coding the findings. The concepts identified were then used to explore, develop, verify, and define codes within the data. The codes were generated from systematic interviews, observations, audio and visual materials, and memos.

Interviews were conducted to promote comfort with the research process, to identify the participants’ backgrounds in regards to their visible differences, to identify their storytelling experiences, and to identify similarities and differences that might result in their experiences.

Observations and behavior logs were used to examine how participants interacted with peers and to identify any changes in behavior that might have occurred throughout the research process. To assist the researcher in providing accurate data collection, audio and visual materials were used to record interviews and storytelling sessions. Memo writing was used to capture the personal perspective of the researcher and to record thoughts regarding the research. Research thoughts included thoughts regarding participant interaction in the research, notes on story creation and development, and personal reflections.

Data collection for each participant was to take place over a 6-week period with the participants participating only twice a week. However, sickness, surgery, and other unforeseen circumstances decreased the number of participation days and increased the time frame for

participants completing their stories. One participant completed his book in the 6-week period but missed a few days, and the other took a few months to complete his story due to the researcher’s eye surgeries and illness related to the participant’s visible difference. Both participants completed the task in only 10 days. Data collection included recording both initial and exit semi-structured interviews with participants and parents (see Appendices B, C, & D) and viewing videotaped story creation sessions biweekly, when possible, and reviewing three behavior logs for each child. Furthermore, the researcher chronicled the storytelling process and used memo writing to record thoughts regarding the research and her personal perspectives.

Interviews

Interviews included specific questions posed to each participant; however, as participants responded, based on the semi-structured interview format, the researcher identified new information seemingly relevant to the research topic and inquired about these new findings

(Creswell, 2003). Interviews were conducted face-to-face and consisted of open-ended questions.

This method of questioning was intended to allow participants to provide detailed responses and allow the researcher to respond to new information. Finally, each interview was recorded, transcribed, and reviewed for data collection and analysis. Because of the sensitive nature of the topic and because the participants were children, during each interview the researcher attempted to develop and maintain a positive rapport with each child while also attempting to empower the child because doing so, according to Westcott and Littleton (2005), was essential to the interview process.

Observations

Participants were observed throughout the day by staff members and during storytelling sessions. According to Patton (2002), these observations should describe the environment, what

is taking place within the particular setting, participants, and, participant observational viewpoint. During observations, staff members from the hospital monitored each participant each day. Behavior logs of the participants were randomly taken from the beginning, middle, and end of the research process to identify how the child interacted with peers and to identify changes over time. Collecting data in this manner allowed the researcher to experience things as they happened (Tudge & Hogan, 2005).

Both the researcher and outside observers conducted storytelling observations. The researcher took on the role of participant observer, guiding the storytelling process of each participant and memoing, as Charmaz (2006) called it, the actions taking place within the environment. Examination of the storytelling sessions also included watching each session on video and studying it for patterns and themes. Both the researcher and outside observer viewed the recordings, each independently and then collaboratively.

Audio and Visual Material

Using a videotape to record each storytelling session allowed the researcher to examine the group process of story making as well as to observe participants independently as they created their stories. According to Fraenkel and Wallen (2003), videotaping allows the researcher to capture the missing components that might otherwise be lost when attempting to take descriptive notes. Additionally, reviewing videos allows the researcher to view repeatedly what has taken place in the environment—the participant’s actions and researcher’s involvement—, provides the opportunity to postpone coding while in the process of the experience, and allows the opportunity for outside evaluation through an observer.

Participants’ artwork was also used as a data collection method. Through review of images created by the children, the researcher attempted to identify patterns and themes that may

be specifically related to children with disfigurements. These themes and patterns were then coded and analyzed by the researcher and outside observer.

Memo Writing

Data were gathered through memo writing. Strauss and Corbin (1998) maintained that keeping such records provides distance between the researcher and the research; it grounds what is to be explored, and keeps the researcher aware of what is taking place. Through memo writing, the researcher backs up findings within categories that help to form the basis of the theory

(Glaser & Strauss, 1967/2006). Taking notes helps the researcher expand or broaden codes identified in the research process by taking an in-depth look at procedures and other happenings within the findings (Charmaz,2006). These writings are recorded throughout the research process

(Strauss & Corbin, 1998).

Data Analysis

In grounded theory, data analysis includes comparing data incident-by-incident in a systematic manner for categorizing data, reviewing data repeatedly, and coding the data throughout the research process (Charmaz, 2006), a method identified by Glaser and Strauss

(1967/2006) as comparative analysis. Through the process of coding, the researcher builds theory from concepts identified and developed in the data (Strauss & Corbin, 1998). These concepts are then formed into conceptual categories, which have been formulated through evidence from the data. The emerging evidence from a category is then used to explain the concept (Glaser &

Strauss, 1967/2006).

According to Strauss and Corbin (1998), coding allows the meaning of the phenomenon to be explored. It also allows the researcher to be creative and systematic while allowing for large amounts of data to be analyzed. These processes were used in this present research, as well

as memo writing, which was comprised of thoughts noted about the research by the researcher

(Charmaz, 2006). Recorded interviews were transcribed verbatim.

Reliability and Validity

In grounded theory, analysis is conducted using multiple means throughout the entire data-gathering process (Denzin & Lincoln, 1994). Interviews, observations, and documentation are reported using rich thick descriptions to provide a detailed account of the phenomenon under study (Patton, 2002). In this research, the researcher systematically analyzed the data using triangulation, member checking, and thick description of the data while repeatedly reviewing the findings.

Triangulation

In triangulation, the researcher uses multiple tactics to establish the validity of data.

Strategies may include using multiple data sources, investigators, or methods. In this present study, the researcher validated the research by using multiple data sources and investigators

(Krathwohl, 1998). Data were analyzed from interviews, behavior logs, observations, story- making sessions, and the stories themselves. Each data source was analyzed for patterns and themes, which were coded and grouped into categories. Assessment also included observing the participants for changes in behavior and self-concept over the 6-week period. Multiple investigators or observers were also used to assist in analyzing the data. During this process, the researcher and the observer independently reviewed transcribed interviews and video recordings, identified patterns and themes, and then discussed them with the other investigators to identify codes within the data.

Member Checking

Member checking encompasses reviewing the findings with the participants to confirm accuracy of the data (Fraenkel & Wallen, 2003).To ensure that participants’ perspectives were accurately conveyed, the researcher reviewed with the participants responses to questions and revealed story-making experiences.

Thick Description

The basis of qualitative research is rooted in providing a thick description of the research data in an understandable fashion, coupling it with meaningful and significant interpretations

(Patton, 2002). The qualitative data for this study are reported as case studies, identifying findings for each participant and then comparing them. Participants were observed repeatedly over a 6-week period throughout the day by staff in an in-patient facility. Finally, to control for the researchers personal lens, the researcher used memo writing to identify personal thoughts and observations.

Summary

The research was conducted using a qualitative approach. The researcher attempted to generate theory from the storytelling experiences of visibly different children. Data were collected from interviews, observations, memos, and audio and video recordings of participants.

Information gathered was then analyzed and coded. To ensure validity and reliability, the researcher used multiple strategies to analyze the data, checked with participants and parents on data collected, and provided a detailed description of the research that took place. The following chapter includes a comprehensive account of the results of the research process discussed in this chapter.

CHAPTER FOUR

RESULTS

The results discussed below are based on a qualitative research study conducted for collecting data to generate a theory or grounded theory (Glaser & Strauss, 1967/2006). This theoretical perspective emphasizes the idea that theory can be found through the process of gathering information (Charmaz, 2006). The information discussed in this chapter helps in answering the question of how visibly different children with low self-concepts respond when asked to create, illustrate, and tell a story when asked to incorporate their visible difference in the storyline.

The study was conducted at an in-patient mental health hospital in the mid-west. Two child participants, ages 10 and 12, each of whom had a congenital disfigurement participated in the study. The criteria for including a participant was that he or she could represent one of three disfigurement categories identified by Bradbury (1996): congenital, traumatic, and physical treatment. However, because of the difficulty of finding eligible participants for this study, it was determined those categories would not be distinguished but that eligible participants could represent any category even if they were the same as another participant. Prior to participation in the study, each participant was identified as eligible to participate by a mental health professional at the facility where they received mental health treatment. Participants were to be involved in an initial interview, a group session, and an exit interview. However, the participants did not participate in a group session but participated individually in story creation due to the difficulty of finding participants.

After selection of the participants, the researcher spoke to them and their parents or guardians regarding the research and then had each read and sign a consent form. Guardians

where asked to complete a parental questionnaire that asked questions about their children’s visible differences (see Appendix C). The initial interview inquired about how the children perceived themselves, how others perceived them, and how others responded to them (see

Appendix D).

During the story creation process, children illustrated and wrote a book with the assistance of the researcher. After completing their books, the participants were asked to read their stories aloud to their family or peers. After the stories were read, the children participated in an exit interview that inquired about their storytelling experience (see Appendix E). The interviews were recorded, transcribed, and coded. The story creation sessions were videotaped and viewed by mental health professionals and the researcher separately, and then as a group.

The mental health professionals and researcher recorded their findings, which were coded. An outside observer was unable to observe the children in school as proposed in the methodology because of HIPPA regulations. However, three random days at the beginning middle and end of the story creation were identified for the researcher to review the staff notes on the children and record key behavior words that identified the children’s behaviors for those days. These words were then coded to determine whether behavior change occurred.

Before discussing the research findings, changes that occurred before and during the research process must be identified. First, instead of grouping the participants after their initial interviews, the researcher conducted individual story-creation sessions with each participant because of difficulties with finding enough participants who qualified for the study to conduct the study in a group format. In addition, because of difficulty finding participants for this research, only two participants were selected to participate. Next, each child participated in only

10 sessions rather than 12 because of illness, surgery, therapy, or off-site visitation. Furthermore,

one guardian who consented for the child to be in the study, did not complete the parental questionnaire; therefore the researcher answered the closed-ended questions. Finally, the story creation session for the second case study did not occur over consecutive days as originally planned due to unforeseen circumstances on the part of the researcher.

Case 1

The first participant in this study, ZJ, was a 10-year-old male Caucasian whose visible difference was located on his face. ZJ was born with a cleft palate and had had several reconstructive surgeries to reshape his lip and palate. During the time of the study, ZJ was in a psychiatric facility and was participating in speech, individual, and family therapy.

Upon entering a mental health hospital, ZJ was identified as a child who had behavior problems at school and home. He often ran away from home and was both verbally and physically aggressive to those around him. This included being physically aggressive toward family members, including his mother and siblings. According to ZJ, his aggression was because peers made fun of him. ZJ entered the hospital after running away and reporting that he wanted to kill himself. He reported that he ran for several miles before anyone found him. He did not provide a reason for running away or wanting to harm himself.

When ZJ entered the hospital, it was reported that he had several previous psychiatric admissions for similar behavior problems and for stating that he wanted to kill himself. During this hospitalization, he participated in both acute and residential treatment. Prior to hospitalization, he had participated in outpatient counseling with his mother for several years. ZJ attended a school for children with behavioral problems. The school had staff members who were trained to hold or restrain children if they became physically aggressive. At this school, ZJ participated in traditional school courses but also participated in weekly individual, group, and

family counseling; participants and their family members were required to engage in counseling or they were discharged from the school.

The goals of the hospitalization were to work on developing a better relationship with his family, increase positive socialization with others, increase self-esteem, and to reduce verbal and physical aggression. His specific objectives were to develop and use positive coping skills to reduce his verbal and physical aggression, express his thoughts and feelings without physical outbursts, and maintain appropriate boundaries with others.

ZJ was brought to the attention of the researcher by the mental health professional who assisted in identifying appropriate participants for this research. She assessed the participant and reported that he often got physically aggressive with others because they teased him about his cleft lip. The mental health professional thought the participant would be a good candidate for this research because he liked to draw and had issues with his self-esteem.

During the first seven days of his hospital stay, ZJ resided on the acute unit of the hospital and he was monitored closely to ensure he didn’t inflict harm on himself or others. The policy of the hospital was, if during those first days an individual did not exhibit harm to self or another, he or she was either discharged from the hospital or sent to the residential treatment facility. ZJ was sent to the residential unit due to his continued verbal and physical aggression toward others. Although ZJ was not considered a threat to harming himself or others, medical personnel concluded that he needed continued support for reducing his verbal and physical aggression. At the residential facility, doctors and nurses monitored the participant’s medication, which he took daily.

According to his mother, ZJ interacted “good” with his peers and had “a lot of friends.”

She also reported that ZJ was involved in track at school; he reported that he enjoyed playing

video games and watching television. When discussing her son’s visible difference, ZJ’s mother reported that he did not talk about his visible difference much and that he did not attempt to cover it. ZJ’s visible difference was difficult to see when initially encountering him. However, scars from surgeries were evident, and ZJ had a noticeable speech impediment that, at times, made it difficult to understand him.

The story ZJ created was called Max’s Big Day (see Appendix H). It was about how a person with a visible difference might make a friend. His main characters were Max and Tye. ZJ identified Max as himself and indicated that Tye was the name of someone on a television show he looked up to and of an individual whom Max was trying to befriend. ZJ mother is also in the story. She and Tye’s mother discuss the visible differences of both boys. Max had a cleft palate, and Tye had cancer.

When discussing his own visible difference, ZJ started by telling others about his uvula.

He said that he did so because many people inquired about the way he spoke, which was quick and muffled. It is not known for how long or how often ZJ was asked about his speech difficulties or cleft palate, but he did indicate that he became angry when others talked about his cleft palate.

The initial interview took place on the residential wing of the hospital grounds. The room provided for the session was used by therapists and doctors to talk with children and their families. This room had one large window with a shade and one large cabinet with several drawers. The therapy space also had one large table, a phone, toys and several chairs. Outside of the room were several offices, the bathroom and the main entrance into the facility.

In order begin the sessions with ZJ, I was required to check in at the main entrance, provide identification, and wait for a staff member from the hospital to retrieve him. Once ZJ

was in my presence, I had to sign a document indicating that he was with me and then we were provided the therapy room. Upon entering the room ZJ sat at the table, I identified who I was and began discussing what was about to take place. In the discussion, I went over the purpose of the study once again, the assent form and reminded ZJ that he could discontinue participation at anytime. Once I finished reviewing with ZJ we began the initial interview questions. ZJ was very verbal during the interview. He appeared to have no difficulty talking about himself and appeared open to participation in the study. He discussed his speech difficulties, his cleft palate, and his feelings related to being visible different.

ZJ’s Initial Interview

In his initial interview ZJ reminded me that he was 10-years-old and lived with his mother, her boyfriend, and his two younger siblings. He reported that he enjoys reading, television, video games, and sports. ZJ informed me that he was born with a cleft palate, a malformation of the lip and palate. He stated he had several corrective surgeries and had speech problems because of his congenital abnormality.

In the initial interview, ZJ was very conversational (see Table 1). He did not appear to hesitate when responding to questions. At times he seemed to provide more information than required and at times, got off track. He informed me that he did not talk much about his visible difference and that he attempted to ignore what others said about it because he did not like it when others talked about him. ZJ also told me that he became angry when others talked about his visible difference. He went on to say that he could become explosive when attempting to ignore others because he did not like discussing what happened to him.

Although, ZJ reported that he did not like discussing his visible difference with others, he did say that he took the initiative and informed others about it. When telling his story, ZJ he said

he tells peers that he was born without a uvula and that his mouth was malformed. He explained that his mouth was formed downward and flat from birth. ZJ did not answer the question of whether it was difficult to respond to others about his appearance. Instead, he said that he was a child who liked to be by himself and did not like to play. When asked whether his mother ever told him to tell his peers what happened to his face, ZJ reported he was suppose to ignore his peers. When discussing what he would like to change about himself, ZJ answered by saying he wanted to be a better person for his siblings and that he wanted to take control of his anger.

Table 1 ZJ’s Responses to Initial Interview Questionnaire

Questions ZJ’s response

How do your peers respond to your Sometimes people say like at church I visible difference? (Do you have people look handsome or I look nice because I talk about the way you look?) usually wear some nice clothes . . . I don’t talk about it much.

What do you say when others ask about I don’t talk . . .I ignore, I ignore them what happened to you? because I don’t like it . . .Anything . . . And plus it makes me really angry.

What do you do for fun? Uh, really when I am alone I like to read books, pretty much I . . . what I do with most of my time or watch TV or wha . . . or I did have a TV that I would play video games on but my mom had to pawn it and didn’t have the money to get it out . . . My favorite sport is football.

If there was one thing you could change Being a better person for my little about yourself, what would it be? brothers . . . Being able to control my anger more.

Table 1 continued

Questions ZJ’s response

What do you do when others talk about Well, when I am angry, pretty much in the way you look? a bad way that they talk about me is usually when I am arguing with somebody and that’s when I can’t control myself. I get really angry and blow up . . . And that’s when my mind says, “Zoom,” and I can’t control my mind. Because it’s just like . . . one time I can control it when I am not really mad at what (inaudible) when they hit that spot where I can’t take it anymore then my mind takes so (inaudible) because my mind froze. (inaudible) and . . .can’t really say that (inaudible) except killing them. Yeah, I don’t like even having that thought but I still have it.

How do you feel when others talk about I don’t know. the way you look?

(Probing) Does anybody ever ask about Did you ask me why I talk the way I the way you talk? do? And usually when they do ask that it is because I am away from my speech therapist a lot. Like here it’s not really easy because I am away from my speech therapist, and I don’t see her very much, so it is kinda hard to keep up with that, and when I do realize I make a mistake, I do my best to correct it. And . . . what I can do to correct it.

(Probing) Do any of the kids at your No, when I tell them that I was born school ever make fun of you because of with a uvula they really think that’s the way you talk? interesting for some reason.

(Probing) So you sometimes talk about About how I was born and what I don’t what happened to you? have. My (inaudible) . . . because the top of my mouth wasn’t formed when I was born and so when it formed it didn’t form downwards, it just formed flat and that’s why I don’t have it.

Table 1 continued

Questions ZJ’s response

So is it easy for you to talk with others Really . . . uh I am to myself. I am one about the way you look or is it hard? of those kids who does not like to play unless and wants to keep to himself and not be disturbed.

(Probing)Did your mom ever uh . . . tell No, she says to ignore them and walk you to talk to people when they make fun away but when they . . . by the time of you . . . to tell them what happened to they do that uh sometimes I am not you? angry, sometimes I am angry, and I can’t because I have this mindset of doing things my way and not in the better way.

(Probing) Is there anything that you want Really, no. I don’t even like, um, to tell me about your cleft palate? talking about it, but I do think it is fine to ignore people but that’s their (inaudible) spot, but I don’t care I can ignore you and that’s one spot I don’t like talking about, and I will just ignore you because I feel I get angry so cause some problems and that’s not what I like. Because I will explode and it will be ten times worser than you have ever seen.”

Story-Creation Process

Before the findings for ZJ are discussed and the description of the story-creation process is described, it is important to note that he did not participate for the entire six-week period. Two sessions were missed due to unforeseen circumstances and the camera was turned off on one occasion (see Appendix G for ZJ’s figures).

ZJ’s Video 1

After checking in and sitting down, ZJ picked up a pencil and starts sharpening it. Once the pencil was sharpened to his satisfaction, he began writing, placing one hand on the writing

tablet in front of him and the other on the table. As he wrote, ZJ’s body was close to the tablet and his face close to the page. As he told his story on paper, ZJ asked quite a few questions concerning how his cleft palate would be used in his book. He also expressed his desire to make his character be like a “regular kid.” ZJ attempted to draw and then changed his dialogue to a discussion on hats. He was asked to choose an art medium and ZJ decided on colored pencils.

While making his selection ZJ appears to have difficulty taking the colored pencils from the box.

He held the box of pencils, shook a few into his hand, placed them on the table, and left the others in the box, appearing eager to get started. He then discussed getting his book published and was very persistent about this. Once ZJ began writing he was reminded that he could use a ruler to place lines on his paper to help in the writing process. He took the advice and stood over his tablet as he created lines for his words.

As the session continued ZJ decided to take a seat, moving around a few times to adjust his position. He then continued to draw more lines on his paper. As he proceeded he played with the point of his pencil and asked about making a “chapter book,” but then indicated he was not talking about a chapter book, but a “regular book.” He then read aloud what he had written. ZJ looked at the camera for a few moments while he explained his book: someone was knocking at the door and his mother goes to answer (see Figure 1). Finished with his explanation, he started to write again. He continued to use a ruler to make lines on his paper, simultaneously conversing with me on the length of the page from one side to the other. After he made his lines, he started to write again, and used the ruler to rub the left side of his head. He drew another line and then erased it. ZJ was told that it was okay to make mistakes. He looked at me and discussed the way his lines were on the page. He then resumed drawing lines on the page, but was not satisfied and erased them once again. He stated that he could do better and, at times, could get “agitated.” I

suggested that ZJ make several lines at the same time and then write, rather than going line by line. ZJ stood up and drew more lines on the page, but continued to erase to get the lines the way he wanted. When asked if he needed help to hold the ruler, ZJ agreed, so he was assisted and he was able to complete several lines and sat down to write again. During this time, he had his head close to the page with his right hand on his tablet and drew with his left.

After a few minutes ZJ stopped writing and reviewed what he had written. When he resumed, he was reminded him that it was okay to take his time. He wrote with his face close to the page and was talked to himself while drawing. Once he finished drawing he showed his book to me and explained his images. During his explanation he quickly turned back to his tablet to make a correction and started to read what he had written. He then explained that his characters were going to play with a car set (see Figure 2). After reading the text, ZJ was asked if he wanted to add to it before ending for the day. ZJ declined, saying “no.” When asked how he felt about the day, his response was that he was going home in two weeks and had a lot of thoughts in his head. Although ZJ said he was excited about going home, he was asked if he was

“sad” because his face did not appear as though he was excited. ZJ revealed that he had a lot going on: his mother’s fiancé was moving in and he was going home after hospitalization. As he talked, ZJ was moving his hands around his face.

Before ending the session, ZJ was reminded of our next meeting, and he inquired once again about what was going to take place in the study and the forms he signed. He was reminded of the consent form he and his mother signed prior to participation in the research. I also discussed the plan for the next meeting/session and reviewed the process of creating the book. ZJ decided on a title for his book, Max’s Big Day. Again, ZJ discussed publishing his book but quickly changed the topic to soccer and falling down. He then inquired on how much longer he

had in the session and was told he was almost done. I then described the structure of a story, identifying the parts as having a beginning, middle, and an end. During my explanation ZJ interrupted and started discussing the setting, saying it needed to be detailed. ZJ stated that it was not hard to write in detail and talked about the type of book he wanted. He also expressed his desired to publish and dedicate his book to someone. ZJ was informed that his book would be hardcover but that he would also get a paperback. The session ended, and ZJ was escorted back to his unit.

Memo one. I observed that ZJ immediately knew what he wanted his story to be about. I also thought that he was more focused on my visible difference rather than placing his own disability in the story. I wrote that he reported that he was creating a character with “special eyes.” It was not until he was creating his final character that he drew himself and placed his own visible difference in the story, giving his character a “mouth ability.” I reported that the session went well and that the participant appeared motivated and excited about getting started.

My concern was focused around not sway the participant in any way, especially during character creation. Yet my own visible difference played a role in influencing what ZJ created.

ZJ’s Video 2

The second session began with ZJ stating that he was going home. When asked if he remembered which page he ended on, he looked through the pages of his book and found the one he was working on. He then began drawing lines on the page and started talking with me. He told me that he ran away once and talked a lot about playing outside. As ZJ talked, he continued to draw and write. As time went on, he got silent and placed his head/face close to the tablet as he was drawing images. After staying silent for a few moments he stated he was very sweaty and working hard.

While ZJ was engaged and working hard, he stated that he was going to complete his entire story on this day. He was reminded to take his time. As we talked, he inquired whether the portion of the story he had already created could be the beginning of his story. He was reminded that the book could be anyway he wanted it to be. He discussed the pages of his book, acknowledging that there could be a beginning, middle, and an end.

He spoke about his story and identified that he would discuss visible differences. As he spoke he placed his head down towards his tablet and alternated between making lines and drawing images. While he was drawing lines, he insured that they are level by pressing the ruler down to make sure it does not move. As we continued to talk ZJ asked how many weeks he had to complete the book and was told he had plenty of time, not to rush, and to make the book was the way he wanted. He discussed his cleft palate and wanted to know if he could put my visible difference in the book. ZJ was reminded to use his visible difference in the book and to create other characters if he desired. ZJ explained that he wanted to include other people with visible differences in the context of his story.

After ZJ finished discussing the type of visible difference he wanted to add to his story, he went back to writing. While writing, he said that he wanted one character to have bone cancer and he revealed he had a cleft palate. He then started to read his story to me and tried to determine whether he wanted his character to be a boy or a girl. He eventually came to the conclusion that his character was going to be a boy and that he would be playing with a car set

(see Figure 2). As he continued discussing his story, he said that the mother in the story would discuss the character’s visible difference. He was reminded that his visible difference must be placed in the context of the story. ZJ lost focus and began discussing his roommates. ZJ was redirected to focus on his story. As he continued writing, he discussed publishing again. In the

mist of writing, he stopped for a few seconds and looked over the page he was working on and erased. As he worked, he placed his face close to the page and had both arms and elbows on the table. After he completed writing, he turned his tablet towards me so that I could see what he had drawn and reported that he liked to draw pictures. Once I viewed his work I turned the tablet back towards ZJ and he resumed working while playing with his pencil and tapping his fingers on the table. He asked how to make a hardcover edition for his book. ZJ was redirected without a description of the hardcover process, but he was informed that we would be working on the cover later in the story-creation process. As he continued talking he was asked about the middle of his story. He responded by looking at the camera briefly and then explained his story. Once he was finished telling his story, he placed the ruler at the top of the page, started drawing, and discussed the publication of his book once more. During the discussion, ZJ told me that he had a good imagination. He was asked if anyone would learn anything from what he had written. He then looked through his book and said “people have problems, but they are not alone…there will always be someone with the same problem or problems like theirs.”

As ZJ finished his discussion, he wrote again, placing one hand on the tablet and the other on the table. He discussed his book again, looked at the camera, wrote more, erased, and wrote even more. As he wrote, he informed me that his whole story was in his head. He was told that if he wanted he could write his entire story down first. He said it was difficult to get all of his ideas on the page and repeated the importance of getting his book published. He said that he liked to read, and I told him to write what was in his head. During this time, ZJ also discussed the word “scramble,” stating that it had different meanings and revealed what the word meant to him (see Figure 4). While writing, he talked about how he would like to inspire others. He then pulled up his chair and discussed his characters Max and Tye. When creating, he reported that

his pictures were not big but that he would enlarge them later. He was asked to take his time. ZJ responded by continuing his conversation on making his images larger. He also talked about numbering his pages and then numbered the pages and afterwards resumed the process of writing his story using the ruler as his guide and erasing at times.

ZJ wrote intensely and reported that he may add another page to his story. He then stopped writing and read a portion of his story aloud, which included a conversation between

Max and Tye. While reading, he had difficulty understanding what he had written. He stopped for a few seconds, made corrections, and, when satisfied, began reading again. As he read, he shook a pencil in his right hand. When he finished, he was asked questions about what he had just read, and about the conversation between Max and Tye. He attempted to explain his story to me (see Figure 5).

After his explanation ZJ inquired about the time. When he realized there was more time, he wrote and reiterated the title of his story as Max’s Big Day and confirmed the story was about making a friend. After he wrote more, he stated that friends were always something good to have. As he wrote, ZJ reported that he was really “excited”. He was so excited that his pencil flipped out of his hand. After retrieving his pencil, ZJ was asked to complete the paragraph he was working on and then wrapped up the session. He acknowledged that time was up but continued to write intensely with his head close to the page. I then stopped ZJ and ask him to explain what he had written. Once he was finished explaining his paragraph, the session ended.

Memo two. I wrote after the session that I saw ZJ as lacking participation or unenthusiastic but he told me that he had a good day. I identified ZJ as not being very involved in the story-creation process and expressed that his facial expression contradicted his verbal statement of having a good day. On this day, I wondered if story-creation would be a positive

experience for the participant. May be my observation of ZJ lacking participation and not appearing involved was due to my own expectations of how I felt ZJ should have responded on this particular day.

ZJ’s Video 3

Session three began by asking ZJ to review his previous work and to identify where he had stopped in the last session. As he recalled his place in the story, he told me that he remembered I was coming to work with him. He then informed me that he had been sick with an ear infection and said that his mom was mad because she was not told about him being sick.

While he discussed his ear infection, ZJ also related that his mother said somethings she should not have. She also told him he was a “mama’s boy.” I asked ZJ to concentrate on his book to redirect his thoughts. He started to write with both hands on the page using the ruler as a guide.

ZJ repeated a few minutes later, that no matter how much he grew up, he would still be mama’s boy. He pushed his tablet to me and said “there” and he read the story to me to see if he needed to add anything. ZJ said he knew he needed to add more about his visual difference (see Figure

3). ZJ continued to read his book and played with his pencil and ruler. He found a few mistakes, corrected them, and then used his pencil to tap on his head. As ZJ read his story, I attempted to get a clear picture of what the story was about.

When reading ZJ’s story I found it challenging to understand portions. It was difficult to grasp ZJ’s explanation as to why Max found it difficult to make a friend. He explained that Max was concerned about his cleft palate. After explaining his reasoning, ZJ was asked to write down the information and identify where he would like to place the new information in his story. ZJ then started to write about Max making friends, and, as he did so, he spoke aloud (see Figure 3).

As he wrote he was guided in the placement of inserting the new information. ZJ then read what

he wrote aloud. After he finished reading I asked him if the character had a problem, ZJ said

“no” and reported that Max and Tye were excited about becoming friends. “New people are shy and open,” he stated. After this statement he was encouraged to place this information into the context of his story instead of just discussing it. ZJ then took his whole body and leaned over his tablet and began writing standing up.

Each time he completed a portion of his story, ZJ read the new text aloud. At times I interrupted when he was talking to get a clearer understanding of what he had written and to make sure that he had added information that he had only discussed. While I spoke to ZJ, he was asked to look up at me so it could be determined whether or not he was absorbing what was being told to him. He then stopped drawing and turned his tablet forward towards me. He was asked if he could explain the images (see Figure 4). The page was turned and ZJ read the next page and began drawing more images. He picked up the eraser and stated that the pencil eraser worked better. He placed his head down and continued drawing. He stopped, turned the page towards me and explained the image he had drawn. I reiterated that his picture went with his image. He continued to draw and read until he got to the third page. When he finished his third image, he showed it to me (see Figure 3). As he was drawing, ZJ said he could not make the people in his drawings wave their hands and then verbalized his next picture was ready, but, this time, he did not review what he wrote. ZJ remembered what his story was about and said, “They are at school” (see Figure 5).

At times he erased, and explained his image to me. Other times, he read a little of his story silently until he completed a new page. When he explained his fourth picture to me, he said that his characters were at recess. He then said he needed to add more to his image. While talking, he drew a bike and turned the page of his tablet quickly. He was instructed to slow down

so the pages would not rip. ZJ found a clean page and started drawing again. He discussed his picture and said it was the last page (see Figure 7). He was asked if he remembered where he wanted to add pictures. He said, “yes,” and ZJ was instructed to use markers to brighten up his images. ZJ was told that copies of his images would be made first so mistakes could be corrected. I asked him if anything was missing, then explained to ZJ part of the process to complete his book. ZJ was told he would color his images first; then they would be put into the computer. He was asked to take his time with coloring. ZJ said, “I’m going to try to stay in the lines.” As he was coloring, he smiled. As we began to wrap up the session, ZJ asked about the tape recorder in the room and also about publishing his book. This is where we ended the third session.

Memo three. I noted that ZJ was really involved with the creation of his story and that he appeared excited. I also wrote that he recognized that he needed to make his images larger and more detailed. I also wrote that ZJ still appeared to be fixated on my visible difference and yet avoided asking me questions about it.

ZJ’s Video 4

At the beginning of session four ZJ was informed that three copies of his story had been made and also explained the coloring process that would take place. He was asked if he would like to add or delete anything from his images before we got started. ZJ began picking colors as I was discussing this process. I interrupted him to ask which type of markers he would like to use.

ZJ said he liked thin markers. As he selected markers, he was asked to practice using the markers before coloring, and reminded him to take his time. ZJ colored with his head close to the page, both elbows on the table, using one hand to color and the other to hold his page. He began discussing getting his book published as if it was an afterthought.

ZJ was reminded his book would not be published, that this book was for his personal use. I went on to explain there was a process where books could be published. ZJ continued to work on the book. After a few seconds, he stated that people published books for money. After this statement ZJ took a blue marker and placed it on his lip and then placed the marker back with the others. He looked at the copied pages on the table, and was handed the next page. As he was handed the copied page, which was not yet colored, he was asked if he knew what was on each page. ZJ described the colored pages he had completed rather than the non-colored pages.

While discussing his images, he said that the pictures helped him to recall the story. ZJ then began to work on his next image. He changed colors often making sure he placed the lids back on the markers, and handed the image to me. The images were placed it to the side, and ZJ began to work on the next image. While working, ZJ discussed that the scene was of recess (see Figure

6). He also informed me that making a friend was a “big thing,” “You will always need someone to talk to,” and “They can be people you can talk to when you’re angry.” While he colored, using one marker after the other, he reported that he was finished and looked at his images. Once he reviewed his image, he handed it to me, then took it back and added to his “playground.” ZJ then asked if his images would be in color, and he was reassured that they would. ZJ than renewed the discussion about friends.

He began by saying, “Some friends are good to have and some friends are not good to have.” He handed his picture to me, but took it back saying he forgot to place an outfit on a character. While coloring his next drawing, ZJ talked to himself but was loud enough for me to hear. He could not find the color grey. He told me that he needed the color but, since he did not have it, he would use the black instead. Since he could not locate the color he wanted, ZJ was told that one would be brought to the next session. Instead of using the color grey, ZJ used black

to complete his image. He stated to me that his image was too light as he stood to finish coloring his image. Finished, he looked at his image of a bike (see Figure 7), said, “Okay” and then said,

“Wait” and added more to his image. He stated again that he was finished but changed his mind saying he needed to add something else that did not come out on the copied image that he had drawn. While making this addition, he said it was a good thing he remembered. As he continued, he licked his hands in an attempt to get marker stains off them. He said, “Okay” and added a little more to his image. Once he completed his image, ZJ’s images were laid in front of him for review. As he reviewed the images, ZJ picked one and added to it. When asked to review his images once more, he added a couch, a rocking chair, and a television. He was reminded that he could still add or subtract from any of his images until they were placed in the computer. While in the mist of this conversation, ZJ stated that an image was missing, but it was located, and ZJ put all of the images in order.

He was asked if he needed to add any words or pictures to his story. ZJ held his head down, closed his eyes with his hands on the table, and, after a few seconds, said “no” and picked up the markers he had used. While he was cleaning up and preparing to leave, ZJ was informed that his images would be placed into the computer and that he would be able to see them on the computer screen in the next session. He was also informed that he would be typing his words into the computer. ZJ found the grey he was looking for earlier in the session and placed the rest of the markers in the box. He was then reminded to remember the name of his title page. He replied that he had it all in his head, but added he could not remember everything so he wrote things down in his journal in an effort not to forget. ZJ said that he wanted to create his title page now. He was allowed to do so, created his image, described it, and said the characters were meeting at the door.

As he was drawing, he asked if the pages could be pulled out of his tablet. He pulled the page out without my response and traced over another image. As ZJ attempted to trace the image, He was reminded that his previous images were enlarged and that he needed to complete this image, without tracing, for his title page. ZJ began drawing a new image with his head down and elbows on the table. He erased several times. After he finished drawing his new image, he gave his explanation, and then was asked if he wanted to add or take away anything from his image. ZJ said “no” but then added markings to another image. As he kept adding the new information to his image, he was asked to slow down and take his time. ZJ added more color and reported, “I’m really ready to finish my pictures.” As he completed his new image, he placed a completed image beside him to remind himself of the colors he had used. ZJ placed the markers back in the box and reviewed his work to ensure his images were in order. After completing this task he was asked if he was finished for the day and took him back to his unit.

Memo four. It was difficult getting ZJ to understand that he might want to expand on his story. At this point in the research, I see him as very engaged in the story-creation process and eager to see the finished product.

ZJ’s Video 5

ZJ was informed his pictures were inserted in the computer. He was told he would be typing his words in the computer during this session, and was then shown ZJ how to operate the computer. First the mouse was described and then the curser. After the demonstration on how the computer functioned, ZJ began typing in his text. ZJ slowly found the letters he needed, pecking in each one. While typing his story, he was asked if he needed help, but he was allowed to find his own way and carried on at his own pace; I monitored his progress while he slowly typed. ZJ let me know he had finished with his first sentence and wanted to know how to proceed. I guided

ZJ on spacing, and he was able to continue. As he typed, ZJ asked for help to change a word and

I assisted. ZJ continued to type and inquired how to capitalize letters on the computer. It was modeled for him, but he made a mistake. I comforted him by letting him know I was there to help. As he was assisted with correcting his mistake, a glitch happened with the computer, which was fixed. ZJ continued to type, using one finger at a time.

While typing, ZJ appeared to have difficulty, and he was reminded to take his time and to ask for help if he needed it. He was also encouraged to slow down. ZJ admitted that he did not type well and stopped for a moment to look at the words on his tablet. He struggled with the shift key on the computer, and was assisted in capitalizing where needed. ZJ was reminded again to ask for help when he needed it. He leaned forward in his chair and began talking while typing words into the computer.

After a few moments, he inquired about spelling a word correctly. He was reassured that the word he was trying to spell was correct. Once he reviewed the word he was spelling, he typed for several minutes, often referring back to his tablet for text. As he continued to type his text, it was noticed that ZJ was having difficulty. When asked if he needed help, ZJ declined, resolved the problem and continued on with his task. Once he completed typing, ZJ’s pictures were placed alongside his written text. As he was watching his pictures being inserted into the computer, he did not recognize his first image as going with the text he had typed. The picture which was inserted was inverted and needed to be rotated. ZJ then reiterated that the picture was not correct.

The pages of his tablet where then viewed and it was confirmed that the picture inserted was on the correct page. ZJ reviewed the pages on the tablet also, and confirmed that the image in question was the correct one. ZJ laughed and put his picture down. He noticed that his picture had been enlarged and confirmed that it was large enough. He then moved on to his next page.

After ZJ and I confirmed that the images were placed in the computer correctly, He was told that, later, he could lighten or brighten the colors. As he moved on to the next page, he was interceded and told that the work he had completed needed to be saved. The file was saved and an empty screen appeared. So he would not be alarmed, ZJ was informed that nothing that he had written had been lost. He was then asked to name his file. ZJ asked if other kids would be creating a book. I responded by saying “not yet,” but I was looking for other participants. ZJ said, “cool” because he was the only one creating a story at that time and he wanted to know when the research topic was decided on. He was told that kids like him needed to write a story.

ZJ replied, “Sometimes [people need] to get it on paper.” As we continued talking, the next page was prepared for ZJ and it was it difficult to get ZJ’s picture into the computer.

Due to the difficulty of placing his image with his text ZJ was told that pictures could be added at a later date and he could continue typing his text. As ZJ began typing his text, he inquired about making the letters big but decided not to make any changes to the lettering at that time. After he made his decision, he asked for a pencil to add information to his book. Once the information was added, he continued with his typing using one finger at a time. As he continued to type, he had difficulty spelling a word; he was reassured that the word he was trying to spell was spelled correctly. While typing, ZJ leaned close to the computer so he was asked if he needed help. He did not respond. As he continued to type, he asked how to spell the word

“friends.” ZJ told me he had placed Max, his main character’s name, into the computer. As he was speaking about this character, he smiled and said he was finished typing. He stated that he wanted the name of his characters spelled in a particular way. The text that was entered into the computer was then edited. ZJ watched as the correction was made and his story saved.

Memo five. ZJ is having difficulty inputting information into the computer. I was frustrated because the pictures were not placed in the computer correctly and changes were difficult. I also wrote that ZJ appeared unaffected by the difficulties but was excited that his pictures are in the computer and that he gets to type his text in the computer.

ZJ’s Video 6

At the beginning of the session ZJ was asked if he remembered where he had left off from the previous session. ZJ looked at the computer, looked at his tablet, and started to type.

He remembered how to enter information into the computer. Because he placed his face close to the screen as though he could not see, ZJ was asked if he could see the information he was entering into the computer and if he would like it to be bigger He said “no” and continued typing. When asked if he needed help, he declined the offer. After a few minutes ZJ appeared confused, so he was asked again. He did not say anything but continued to struggle, so he help was provided without verbal confirmation. While he was being assisted, it was noticed that ZJ had spelled the name of “Ms. Heartford” differently than on his previous pages, and he was asked to confirm which spelling he desired. After making a decision about the spelling of this name, he attempted to add additional information to his text and to make corrections. He needed help from me to make changes.

After the corrections were made, ZJ took over typing again. As he continued typing, ZJ talked to himself and inserted information in the wrong place. He was asked to slow down, and an attempt was made to show him how to begin the first part of a sentence. ZJ continued to rush, and another attempt to calm him down was made. He was supported while he attempted to make corrections. After ZJ completed his corrections, he was asked to read his sentence to confirm that it was correct. It was then reiterated to ZJ that it was okay to ask for help. ZJ then said “uh huh”

and continued typing. He began deleting information from the computer, and as he did so he was reminded him that he did not have to do so. ZJ then continued to type, and a few seconds later asked for help spelling the word “bye.” He typed for a few minutes more and then said he was

“done.” ZJ still asked for help changing the word “Mrs. Heartford” throughout his book.

After the changes were made, ZJ was asked to go to page “four” and make other changes.

ZJ was asked to make the page bigger so he could see the words on the computer screen in order to make changes. He whispered to himself as he made corrections. When reminded to take his time and to ask for help if needed, ZJ replied, “I know; I’m trying to fix the x,” and continued typing for a few minutes. At one time, ZJ stopped to pop his knuckles and resumed typing. A few minutes later, ZJ stated aloud that he was confused and asked me how to spell the word

“friendly” (see Figure 5). ZJ was told how to spell the word and he started typing again. ZJ stated that he was done typing information into page seven and asked if he was on the right page.

Together, ZJ and I identified that he was really on page five. After confirming this, ZJ informed me that the words on the computer screen needed to be enlarged. They were enlarged and, when asked if the words were big enough for him to see, ZJ agreed.

ZJ continued to page six. As he was typing, he stopped and stared at the computer screen.

He was asked what was wrong and then was assisted without making the researcher making correction. After a few moments, ZJ requested help to place an apostrophe in his text and then let me know that he had completed page six.

He was guided in starting his next page. As ZJ typed for a few minutes, he said, “I can’t figure out why it keeps on doing that.” I leaned forward to see what he needed and he replied he wanted to make an “s.” ZJ was then told that the letter was an “s” and enlarged the font so that he might see the letter more clearly. ZJ did not want the letter to have a large space in between it

and the next letter. It was explained to ZJ that the letter spacing appears different for each letter in his text. He asked for help spelling the word “excited.” he was informed that the session would end after he completed the page he was working on. He typed for a few more moments, stopped to pop his knuckles, and said that he was done. He reported that he was getting a cell phone for “emergencies only.” He also let me know that he was going to be discharged from the facility. ZJ was informed that the story-creation process may need to speed up. He was asked to think about his story and if it was telling what he wanted it to convey. He was reminded that a cover page needed to be added. Together we reviewed his images for a cover page. Once it was selected, there was an attempted to end the session. ZJ started discussing his character Max and said that he does not like to be around people. He was asked to place that information in his story and he did so. He let me know that Max was similar to the character Tye, as both are lonely and do not like to be around other people.

Memo six. I find myself having difficulty getting him to expand or be more detailed about what he is trying to convey to his readers. I find it difficult because I do not want to tell him what to say or what to write. Although I wrote that I am having difficulty trying to get ZJ to expand his story, I also wrote that he appears to be gaining an understanding of what he needs to do with his story. On this day, I also noted that ZJ appeared frustrated with the computer process but appeared to become more familiar with how to use the computer.

ZJ’s Video 7

As recording began for the session, ZJ acknowledged a clock in my hand. He was told that it was to make sure we stayed on time. After this discussion the pictures that ZJ created were placed on the table and they were also shown to him in the computer. He said that an image was in the wrong place, but then realized that the picture was in the correct place. After making sure

the image was correct, ZJ asked to review the same drawn image. As he reviewed the image, I realized that the picture was backwards as well. I then discussed with ZJ how to insert pictures in the computer. Once I reversed the image in the computer, ZJ confirmed that the picture was correct. As we moved to the next page, page four, we noted that it did not match the written text.

We then found the correct image and inserted it into the page.

After the images were placed in their right order and rotated, ZJ was asked to expand on how Max made friends with Tye and moved the computer to the side awhile. ZJ then began adding more information to his story and discussing what he wanted to add to his text. ZJ told me that Max wanted to be friends with Tye because he, like Max, had a visible difference. Once he finished writing, he then read what he had written to me. He was asked if he wanted to add a picture to his text. ZJ replied by saying “no” and looked at me, and I asked him what was wrong.

He said that nothing was wrong and looked at the computer.

After identifying that nothing was wrong with ZJ, I got the computer and allowed him to get ready to insert his text. Before he began typing, ZJ asked if the words on the computer screen could be made larger. He was told that, before he began typing his new text, a page must be inserted into his story. A new page was inserted, and ZJ started inputting his new text. As he inserted his new text, he asked for help spelling a word. He was assisted with the correction, continued typing, and said that he was starting to type faster. His statement was agreed upon and he was assisted with inserting more information. As corrections were made, it was noticed that

ZJ took out a letter in a word. He was asked to place it back in. ZJ tried to fix the mistake, but was unable to without assistance. After the correction was made, ZJ took over typing, yet requested my help on spelling other words. Once he completed placing his text into the computer, he read what he had typed and, with assistance, saved the information.

When ZJ resumed typing, he noticed a mistake, and corrected it without assistance. He was then told that he was “learning a lot,” and he confirmed this by saying “uh huh” as he was typing. Once ZJ finished with his typing, a new page was inserted so that he could insert his title page. While preparing to insert ZJ’s title page, the size of the letters on his title page were discussed and there was a review of various fonts available. He confirmed the size he wanted and began typing his title. He attempted to capitalize all letters by using the shift key. When asked if he wanted all the letters in the title capitalized, he said, “yes,” and was shown him how to turn the caps lock on. ZJ then voiced his title page out loud, Max’s Big Day. When asked who wrote his book, he said he needed to place his name in the text. He typed his name. As ZJ was entering his name, he was asked how large he would like his name to appear on his book. He told me that he wanted his name to appear in small letters on his title page. He then typed it and then picked an image for his title page.

After discussing his title page ZJ changed the way he wanted it to appear. As the image is being changed, ZJ said, “your computer is awesome,” but then noticed something that he thought needed to be changed. While he was thinking about making a correction to his text, he was told that his work would be checked for spelling and other grammar errors. We then reviewed ZJ’s story together. As ZJ was reading his story, it was recognized that he was using the words

“visible difference.” He was asked if he really would like to use the term in his story. ZJ then explained the meaning of visible difference, and confirmed that he wanted to use the term in his story. He then asked me about my visible difference and whether I was born looking the way I did. I explained that I was born with the visible difference, and that my eyes “danced” or moved around a lot. ZJ apologized to me for my visible difference, and we began discussing his story again.

As ZJ worked on his story, he told me that he wanted one picture to extend across two pages. While he discussed what he would like to do, ZJ found an error on the page and corrected it. As he made the correction, he added to his story and said aloud that other people are making fun of his character Tye. He typed in more information and began talking to himself as he attempted to make another correction. ZJ said that he wanted to erase the small letter “m” and capitalize it. The “m” was erased for him, and he resumed typing. As this was done, he said,

“This computer is really helpful.” As ZJ typed, the words on the computer screen disappeared.

The mistake was fixed and he resumed typing. While typing, ZJ asked, “What’s going on here?”

A correction to a word was fixed that ZJ could not see. ZJ then made his own corrections, and continued typing.

Once he finished, the story was saved. After the new text was saved, ZJ read the pages with me. As we were reading, ZJ interrupted and said that he wanted to add more information into the story. He said that he was going to tell the audience “what each page is about.” “I’m making it to where they can understand it more,” he added. He continued typing and reading aloud. While he was doing so, he noticed a mistake, fixed it, and added more words to his story.

He was praised for figuring out how to change his own mistakes on the computer and was encouraged to continue to the next page. ZJ did not go to the next page but told me that he needed to add more information to the page that he was working on.

While adding new text to his page, ZJ asked how to delete text and how to place information that he has deleted somewhere else in the text. It was explained to him how to do so and he asked how to spell the word “together”, which he had spelled incorrectly (see Figure 6).

He then used the spell check, figured out how to spell the word, and continued typing. After using the spell check, ZJ then explained that his characters got caught up in a game that they

were playing and he was told it was okay for him to add the information into the context of the story. The amount of time left in the session was then identified and it was determined that time was almost up for the session. ZJ confirmed that he was done typing in his new information and he was told that his images would be added into his story. The pulled up the title page to review it and asked ZJ to place the word “by” on his title page. After making the corrections, ZJ was told that he could design his title almost any way he wanted. ZJ interrupted and said he knew how he wanted his title page to look. ZJ was then presented various available fonts. After ZJ chose his font for his text, there was a discussion on the color for his title page. In the discussion, he reported that he would like to use the color red, and his story was saved. After the story is saved, ZJ said that his mom would be “impressed” and that what he was doing was “awesome.”

We then left the session together.

Memo seven. As I began memo writing for this day, I wrote that everything seemed to click or make sense for ZJ. I wrote that he began to understand that he needed to be more specific with what he was trying to convey to his readers and that I tried to make sure that I was not leading him with his story direction or being biased. During this day, I identified ZJ as pleased with his work and excited to read his story to his family. I also ponder if he will use the book he has created after he has finished participation in the research.

ZJ’s Video 8

At the time of this session ZJ had missed at least one session due to an ear infection and one session was missed as a result of a flat tire. At the start of the session, ZJ asked if there was security on the laptop. He was told that there was and the conversation was redirected towards the task of adding color to his images that were not completely filled in. ZJ used his pencil to outline one of his images he was about to color and let me know he was only going to color the

portion of the image he had outlined. After he completed this task, he waited for me to get the thin markers he had used in other sessions. When handed the markers, he told me the thin markers were the best ones to work with and poured the markers out on the table in front of him.

He chose a marker and began to outline. While outlining, he started talking about why he likes the thin tipped markers rather than the thicker ones. He moved to his next image and began coloring, and started talking about the color of his hair. As he talked about his hair, he stopped coloring. Once he finished speaking, he began coloring again without encouragement. As ZJ colored one image, he placed another beside him and began working on it too.

He confessed he had donuts before coming to the session and they were given to him by his teacher. In his discussion of donuts, ZJ told me that the teacher did not do the “right thing” by giving him donuts because they make him “hyper.” He went on to say he was learning how to control himself. After this discussion, ZJ told me he was finished with his image but changed his mind and added more to what he had drawn. Once ZJ added to his image, he as told to review all of his images to see whether or not he needed to add or subtract anything to his pictures. It was then reiterated that he could also start an image over or redo it if he wanted. ZJ asked about taking away portions of his image and he was told that this could be done. After listening to the changes that ZJ wanted, we reviewed the rest of his images to ensure ZJ was okay with his pictures. As we reviewed the images, the camera turned off and the session ended.

Memo eight. As I review this day, I identify it as a day of making up the two days missed during the six-week session. I made note that ZJ appeared as though he was rushing through the story-creation process and that I could not seem to get him to slow down. On this day, I see ZJ as overly excited and I find myself worried about getting his pictures the way he would like them.

ZJ’s Video 9

ZJ was given glue and hardcover pages for his book. He attempted to open the glue but was unable to do so. While he was doing this, I began going over the order of the book to make sure it was correct. After showing ZJ the hardcover pages, he was shown him the red cover page he had chosen, and asked if the color was okay. He confirmed that he was okay with the color red for his cover and then his title page was reviewed. The images that showed to him were adhesive replicas of his initial drawings. When beginning the review of the second page (see

Figure 1) of ZJ’s book, an undesirable marking on the page was noticed and ZJ was asked if he wanted the markings deleted. He confirmed that he wanted the markings eliminated and moved on to review the second and third adhesive images (see Figures 2 & 3). As we reviewed the images, ZJ continued to fumble with opening the glue and said, “This excites me.” We then moved on to review page four (see Figure 4) to see if it was correct and ready to be mounted to the hard pages of ZJ’s book. While reviewing this page, ZJ said that the red markings that he saw on the computer screen, when typing his text, were not on his finished images. He then reviewed page five (see Figure 5) and said that he was going to create an “awesome book.”

Finally, ZJ got to the author’s page, reviewed it and confirmed that there were no corrections to be made. All adhesive pages were taken out and ZJ prepared to glue his hardcover book together. It was then explained to ZJ that the adhesive pages of his the book would be placed in his book without his assistance. He was then showed how to glue the hardcover pages together. ZJ said gluing is “just like painting,” and began placing the brush in the glue. As he started gluing, ZJ said that the brush did not fit into the bottle, but, with nudging, he was able to get the brush to fit in the glue bottle. To make sure ZJ had no more difficulties with the glue, a piece of paper was placed in front of him so that he could pour glue out on it. ZJ did not use the

paper but continued to place his brush in the glue bottle to get the glue he needed. ZJ then stated that he was trying not to use too much glue but proceeded to add an excessive amount of glue to the hardcover page he was working on. He was asked to slow down so he would not get glue on the table. He slowed down and completed his first page.

Once ZJ completed gluing his first hardcover pages together, his work was checked to confirm whether or not the hardcover pages lined up and ZJ was shown how the pages of his book would turn out. The pages of the book came apart, and ZJ asked if it needed more glue. He was told “no,” but to ease his concerns a book was placed on top of pages to bind it together. ZJ was allowed to start on his second page. While he worked on the second page, he was assisted in combining the first page with the second. As we performed this task ZJ stood up.

When ZJ began the work on his third page, he was asked not to overload his brush with glue. He replied by saying the glue dried quickly. With the third page completed he was assisted in placing the third page with the second. The pages were aligned and the computer placed on top to help adhere the pages with the glue. Satisfied that the pages would adhere to the glue an attempt was made to explain the next process of completing the book, but was interrupted by ZJ who gave his own explanation.

Done with his explanation ZJ was informed he was correct. ZJ was then told that he would read his story to his family after the adhesive images were placed on his hard back book.

ZJ said putting his book together would be “great.” After his comment, the exit interview was discussed and he was informed that this interview would take place the same day he read his story to his family.

Memo nine. On this day of memo writing, I note that I am upset that ZJ will be unable to read his book on his own before reading it to his siblings. I also noted that creating the book with

ZJ was an interesting experience and that he seemed to focus more on getting the book published at times. I also noted that his experience appeared to be a good one and that it could be used as a tangible release to assist him in reducing his anger and frustration. As I continued to write, I expressed my regret about having difficulty explaining clearly the focus of the story-creation process.

ZJ’s Video 10

At the start of this session his mother and siblings are in attendance. He began by reading his title and then the content of his story. While he was reading, he showed the image on his first page and then read quickly through his next few pages. After reading several pages, he showed another picture to his family audience. As he was reading, one of his siblings asks him to identify

Max. ZJ told his sibling that Max is a character in his book and proceeded to read until he gets to the end of his book.

Afterwards, his family was asked if they had any questions for ZJ. Both ZJ’s mother and siblings say “no,” and ZJ closed his book. Once ZJ had closed his book, he allowed his siblings to get a closer look. When the siblings got closer to the book, they asked ZJ about the pictures in it. ZJ’s youngest sibling asked ZJ to identify himself in the story and to also identify his cleft palate. As they were talking, ZJ’s mom interrupted and said, “I bet the one with the cleft palate is

(ZJ).” ZJ said “yes” and continued showing his siblings the pages of his book.

Memo ten. This last day of story-creation my memo writing suggested uncertainty about the responses from ZJ’s family members. ZJ’s mother appeared unresponsive to his work until she realized there would be a second small copy of his story. When ZJ is informed there is a second copy of his book, his mother responded that she would take the hardback book he created and place it in a memento box. This response was somewhat upsetting to me because my desire

was for ZJ to have access to the book to utilize as a tool when he needed it or felt it necessary to explain his story to others.

ZJ’s Observations

During the first day of the story-creation process, it was noted that ZJ had difficulty with the pencil sharpener, was creative, and was aware of the camera. ZJ erased his work often, spoke of his family, stood while drawing, showed me his work, and talked to himself while drawing.

Observations also revealed that ZJ saw himself as different from other children, referred to other kids without visible differences as “regular kids.” He used a ruler to make lines on his tablet appear perfect. When creating his story, ZJ wanted permission to create a particular type of kid’s book which he referred to as a “chapter book.” During this session, it was noted that ZJ turned his book to the researcher to view what he wrote or drew. On this first day, observers noted that

ZJ not only placed himself in the story but placed his mother in the story. Further observations revealed that ZJ had many personal things happening in his life. The two events that he revealed were (a) that his mother allowed her boyfriend to move in with ZJ and his siblings and (b) that he was to go home in two weeks. Finally, observers indicated that ZJ had difficulty with organizing information until the various components of a story were discussed.

On the second day of story-creation, observers reported that ZJ volunteered information about his family and shared his feelings. It was also observed that ZJ wanted to get his drawings perfect, putting much thought into the coloring process and not wanting the session to end. When discussing his desire to place information in his story, observers indicated that ZJ often spoke about the information that he was going to put in his story but never wrote down. It was also observed that his need to get things just right was not as intense as the previous day.

Observations also indicated that ZJ used the term “visible difference,” used his ruler, appeared

excited, and talked aloud. Memo writing on this day indicated that ZJ did not appear engaged in creating this story, but he reported having a “good day.”

On the third day of observation, the observers noted that ZJ responded “positively to the task,” he was conscious of the camera, and appeared to be speaking to the camera at times.

Another observation revealed that ZJ talked about his mother while coloring and he corrected or added information to his story line during the session. ZJ also discussed adding information to his storyline regarding his cleft palate. Observers noted that this topic was not one which ZJ appeared to want to discuss; instead he evaded the topic. Other observations indicated that ZJ appeared to have difficulty with the writing process, but he appeared to be engaged in the task at hand. Observers also noted that ZJ was elated when the researcher began discussing the process of how his book was going to come together.

On the fourth day, ZJ’s pictures were inserted into the computer. The observers noted that he appeared very intense when viewing his pictures in the computer; he needed some technical assistance with the computer, and had some difficulty typing. As he attempted to absorb new information about the computer he was observed picking at his face and hair. Observations also revealed that there were problems with the computer which may have led to some of ZJ’s frustration.

On this same day, it was noted that he appeared to enjoy putting information into the computer although there was some evidence of difficulty. While engaged in the typing process,

ZJ was slow to ask for help from the researcher but accepted assistance from the researcher when it was offered. In this same session, it was revealed that ZJ once again mentioned his mother and the desire to publish his book. It is noted on this fourth day that persistent reminding by the researcher that ZJ can add or take away information from his images or text is a positive due to

the fact that ZJ made modifications when asked to review his book. On this day, the researcher also noted that ZJ appeared excited and engaged in the story-creation process, also noted was ZJ seemed to focus a good deal on her visible difference. Further observations on this day also identified ZJ as needing encouragement to take his time and to do his best.

On the fifth day of observations, ZJ was observed as being in a hurry or impulsive when completing the task, but having less difficulty with the computer. Observations also indicated that he was slow to ask for help and eager to participate. It was also noted that ZJ would peck on the computer and he had difficulty with the mouse pad. Observers also noted that ZJ was requested to slow down and had little conversation with the researcher. When ZJ was observed talking, it was noted he was talking aloud to himself as he made corrections on the computer. ZJ was observed adding information to his storyline and becoming more familiar with the keys on the computer. He was identified as being focused and having a desire to get things just right.

Observations also noted that ZJ needed convincing his images were in the computer correctly and the text would not be as small as it appeared on the computer screen. The researcher also noted that he appeared frustrated at times but was becoming increasingly more comfortable with using the computer. The researcher also noted difficulties with having the participant expand on his story.

During the sixth day, observers indicated ZJ was “cooperative,” “involved,” “attentive,” and “patient.” Observers noted that ZJ was making corrections on the computer and he identified some of his pictures were placed in backwards on the computer. Observers also identified ZJ as

“compliant” and “eager” to complete the task of the day and also identified him as “engaged” and “focused” during the typing process. In this session ZJ was identified as “excited” about creating his title page and becoming aware of missing components to his story. The researcher

observed he came to the realization he needed to be more specific in his writing. During this same day, it was noted that ZJ again mentioned his mother, reporting that she would be

“impressed,” and wanted to get his story just right.

On the seventh day of story-creation, ZJ continued to add information to the computer and make corrections. He was observed as appearing frustrated with this process but making corrections as needed. Observers noted that ZJ chose to use the word “visible difference” in his storyline and was able to provide the reasoning for his insertion. ZJ was not distracted by outside noise but appeared to maintain focus on entering and correcting information in the computer. ZJ was also noted as “joking” as he made corrections to his story. Observers also noted that ZJ began to “open up,” needed reminders to take his time, exhibited some frustration, and had empathy for the researcher concerning her visible difference. It was also noted he appeared focused and eager as he participated in the research project. The researcher’s observations indicated a similar sense of urgency or eagerness. She noted that he appeared to rush and that he seemed “overly excited.”

On the eighth day, the observers’ notes indicated ZJ was tasked-oriented, focusing on gluing pages together, and compliant with directions. He had difficulty opening the glue used to bind his book together. As ZJ attempted to use the glue, he was careful in placing the glue on his pages and his confidence increased as he progressed in the gluing process. Observers also noted that ZJ had difficulty with listening to instruction due to focusing on the gluing process. ZJ was showing some excitement about his book coming together. Researchers’ notes also indicated ZJ was “amazed” when seeing his book come together and the researcher’s notes also indicated that

ZJ often spoke of publishing his book.

The final day of observations was story-telling day and ZJ brought his mother and two siblings to hear him read. Observers noted ZJ was “happy” while reading his story but that he appeared to rush through the reading. It was also noted that he was slow to show his pictures to his mother and siblings. Observations of his interview indicated that he appeared “satisfied” and had a sense of affirmation.

ZJ’s Behavior Logs

ZJ’s behavior was to be monitored throughout his school day, however, due to hospital regulations; the researcher was only able to review the participant’s behavior logs which were completed by hospital staff. Because the notes are confidential and protected by HIPPA, the researcher identified specific action words within the staff notes that identified ZJ’s behavior at the beginning, middle and end of the story creation. Behavior logs provide an overview of the participant’s day. They do not provide a detailed description of the participant’s behavior but provide a general idea of the participant’s behavior during that specific day.

At the beginning of ZJ story creation process his behavior was identified by staff as

“compliant”, having a “content affect”, and exhibiting “no major problems” during the day. In the evening his behavior was identified by staff as “cooperative and positive”, “compliant” and having some “negative impulses”. During the middle of the story creation process staff identified

ZJ’s behavior as “following negativity”, having a “positive demeanor”, “cooperative”, and provoking in the morning hours and interactive, “cooperative”, and attempting to “control” himself during the evening. The third set of logs indicate that ZJ was “cooperative/compliant” during the morning and presented a having a bright affect, was “redirected” on occasion but

“compliant”.

ZJ’s Exit Interview

During his exit interview, ZJ reported that he liked creating a story that included his visible difference (see Table 2). He indicated that his favorite part of his story was when his main characters, Max and Tye, made friends. His least favorite part of the story was when his main characters did not know each other. He identified “Max” as his favorite character of the story.

This character was the individual to whom he gave his visible difference. ZJ did not identify a least favorite character because he felt that “they were all pretty nice.” When discussing his feelings about telling his story aloud, ZJ reported that he felt “happy” because he was in the presence of his family. He also reported that he would like to read his book to other individuals besides his family so that they could read it and enlighten others. Concerning whether he would read his story to his peers, ZJ reported that he would because his book was “nice” and he wanted them to hear about his experience.

Table 2

ZJ’s Responses to Storytelling Experience Questions Questions ZJ response

Did you like or dislike creating a story “I liked it because we got to tell about us that included your visible difference? and what we are like.”

What was your favorite part of the story? “When Max and Tye became friends.”

What was your least favorite part of the “When Tye didn’t know . . .When Max story? didn’t know Tye.”

Would you tell your story to those who “Yes.” are not visibly different?

Who was your favorite character, and “Max, because Max has a cleft palate, why is it your favorite character? and Max represents me.”

Who was your least favorite character, “Really, I don’t have one because they and why is it your least favorite? were all pretty nice.”

Questions ZJ response

Table 2 continued

Questions ZJ response

How did you feel after telling your “I felt happy because my family was story? here, and there’re the ones that heard it.”

Would you like anybody else to hear “A lot of people because I feel that, if your story? people hear it, they will want to read it more and tell others about it.”

Is there any thing missing from your “I noticed one thing I forgot to put hair story? on Max one time but that was no big deal.”

Is there anything you want to tell me or “My story is accomplished.” say about your story?

When attempting to identify patterns and themes in ZJ’s story-creation experience, the researcher identified words in the observations that described ZJ’s behavior (see Table 3). The words chosen came up in the observations several times or their opposite meaning was identified. The findings indicated that the days he worked on the computer (Days 4, 5, and 6) were animated and involved days. On these days, ZJ’s behavior took on various forms. He was identified as being engaged, involved, attentive, eager, and focused. Days 5 and 6 were even more descriptive. On these days, seven descriptive words were used to identify ZJ’s behavior.

Observers also described him on these same days as being impulsive, impatient, fidgety, and frustrated. Overall, the observations reflected positive behavior for ZJ.

Several themes were found in ZJ’s story-creation process. Observations indicated that ZJ appeared to be aware of the camera, spoke of publishing his book, discussed his family, stood up, erased, or was identified as a perfectionist and was found attempting to continue his work once

he reported that he was finished. Although not a theme, it was found that ZJ inquired about the researcher’s visible difference on Days 2, 6, and 7. The themes are shown in Table 4.

Table 3

ZJ Descriptive Behaviors Day

Behavior 1 2 3 4 5 6 7 8 9

Engaged * * * *

Excited * * * *

Involved * * * *

Eager * * *

Attentive * * *

Focused * * * *

Lacked focus * *

Impulsive *

Fidgety * *

Impatient *

Frustrated * *

Rushed/in a hurry * * * Note. Days 1–3: Writing and drawing; Days 4–7: Computer; Day 8: Glue; Day 9: Reading.

Table 4

ZJ’s Themes

Day

Theme 1 2 3 4 5 6 7 8 9

Aware of camera * * * *

Self-disclosure * * * *

Discussed * * * * * publishing

Noise * * * *

Discussed family * * * *

Erasing/perfection * * * *

Standing up * * *

Discussed * * researcher’s visible difference

Tried to continue * * * * drawing or writing

ZJ’s observations indicated that story-creation impacted him in a positive way. The story- creation process offered ZJ the opportunity to discuss his visible difference and how it affected him. It provided him a verbal outlet to discuss his feelings with another in a non-threatening way.

ZJ made it known that he was teased about his visible difference. Through the process of story- creation, ZJ revealed that he physically acted out when he teased about his cleft palate or speech difficulties. ZJ’s story revealed information about ZJ’s family, how he coped with others, and his internal desires. Right from the start, ZJ made it known he was teased about his visible difference

and his speech difficulties. He reported that he was physically and verbally aggressive to those who made fun of him.

Through the story-creation process, ZJ disclosed a little about his family life. First, he talked about his mother. His mother became upset when she found out that he had contracted an ear infection and was not told about it. He also revealed, even though he did not go into specifics, that he had difficulty at home. He previously ran away from home and was several miles from home in an effort to get away. Through the story-creation sessions, it was found that

ZJ’s family was also going through transition. For example, ZJ reported that his mother was allowing her boyfriend to move into the family home. ZJ did not care for the boyfriend. Also, ZJ revealed he would like to be a better example for his siblings.

ZJ was described as excited, engaged, and focused, and observations revealed more positive reactions to story-creation than negative. The computer process provided challenges for

ZJ. He had difficulty with typing, understanding how to make corrections, and impatience when having to wait for corrections to be made or assistance from the researcher to fix mistakes or assist him in a task. Two of the three computer days were identified by observers as frustrating at times for ZJ, but also indicated ZJ was deeply involved in the process. ZJ’s art work was void of his own visible difference but was often referenced when talking with the researcher and was acknowledged and written down in his book.

Many of ZJ’s images were missing key components of the body and face. Eyes, pupils, noses and limbs were not drawn and there were smiles on many of his images. Although ZJ used color in his drawings he often outlined his fingers rather than coloring them in fully. ZJ’s behavior did not appear to markedly change, as he continued to provoke peers and was influenced by negative behavior. ZJ’s behavior may not have markedly changed for the better,

but creating his story did appear to have a positive impact. He often indicated that he wanted to publish the book he was creating and that he wanted to help others.

Summary of ZJ’s Work

Overall, ZJ’s observations indicated that he enjoyed story creation. He was often described as excited, engaged, and focused. Although some frustration occurred, observations revealed more positive reactions to story creation than negative. The computer process provided challenges for ZJ. He was described as having difficulty with typing, understanding how to make corrections, and sometimes having to wait for the researcher to fix mistakes or assist him in a task. Two of the computer days were identified by observers as frustrating at times for ZJ. The computer observations day also indicated that ZJ was involved in the process. ZJ’s art work was void of his own visible difference but was often referenced when talking with the researcher and was acknowledged and written down in his book.

Many of ZJ’s images were missing key components of the body and face. Eyes, pupils, noses and limbs were not drawn and there were smiles on many of his images. Although ZJ used color in his drawings he often outline his fingers rather than coloring filling them in. ZJ’s behavior did not appear to markedly change, as he continued to provoke peers and be influenced by negative behavior. Even though ZJ’s behavior may not have changed for the better, creating his own story did appear to have a positive impact. He often indicated that he wanted to publish the book he was creating and that he wanted to help others.

Case 2

The second participant of the study was a 12-year-old Caucasian boy who lived with his grandmother and one of his siblings. He also had two step-sisters who did not live with him. CR

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was admitted to the inpatient mental health hospital on the acute unit for threatening to kill a peer and being physically aggressive to that peer. Upon admission, he did not verbalize why he assaulted the peer but did let the admission staff know he got very angry.

This was not the first time CR has been in a facility like the mental health hospital; his records indicated that he had been in several inpatient facilities and had been placed in the hospital mainly due to his physical aggression. He, like ZJ, had also participated in outpatient counseling and had attended a school for children who were physically aggressive. CR’s records also indicated that he had been in and out of medical hospitals throughout his life time to correct a facial malformation.

CR was born with a pronounced malformation of the face. His visible difference was evident upon meeting him. At birth, he could only see out of one eye. The other eye was completely closed due to a tumor covering it. As a young child, he underwent and endured several reconstructive surgeries to form an opening so he would be able to see from the left eye.

Surgery was also performed on his nasal passages to assist him with breathing better and to aid in the reconstruction his face. The goal was to look as “normal” as possible.

When first looking at CR, it was clear that he had something wrong with his face. The right side of his face looked like most individuals, but the left side of his face was elongated, bumpy, and misshapen. CR’s eyes appeared to be different sizes, and he has no muscle movement above the left eye. His left eye had no eye lid, and, when he blinked, there was little muscle movement on the left side of his face. CR’s lips were affected by his congenital malformation. The left side of his lips were misshapen, and, at times when he spoke, he was difficult to understand.

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A few days after being admitted to the acute unit, the mental health professional for this research project let me know that she had spoken to CR and his grandmother about participation in the project. She reported that CR was often teased about the way he looked and that he was interested in participating. As a result of the discussion with the professional, a meeting was set- up with CR and his grandmother during a family visitation. In this meeting, the research objective was discussed, and each of them agreed to the terms and conditions of the project.

CR’s family reported that he did not get along with the sibling he lived with, and he had not seen his father in one to three years. There was no mention of his relationship with his mother and two other siblings except to acknowledge that they existed.

During the study, CR entered a medical hospital at least once because of an eye infection.

Watering eyes and surgeries were the norm for CR. He had numerous surgeries prior to this research study and he reported that surgeries did not bother him because “they put you to sleep.”

He acknowledged the desire for more surgeries to improve his appearance. CR reported that he was often stared at because of his appearance and that he immediately attempted to tell others about his physical appearance. It was observed that CR was uncomfortable discussing his visible differences with others. From the way he imparted the information it almost appeared to be memorized, and he rushed through what he was trying to convey.

Although CR acknowledged that he attempted to inform others about his physical appearance, he often became angry because of having to tell his story repeatedly. He also admitted to acts of violence, at times because of the teasing he endured from others. He said that he did attempt to “walk away” when others teased him but reported that he generally became

“mad” or upset.

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CR’s Initial interview

CR was a 12-year-old male who lived with his grandmother and sister. He had not seen his father in a few years, and his mother was not discussed throughout the story-creation process.

He liked to draw, color, and watch television. During his initial interview, CR was forceful with his words and, at times, appeared uncomfortable with questions asked (see Table 5). He often covered his face with his right hand and gave quick short responses. At the start of the interview,

CR indicated that he became angry when others talked about his visible difference. He reported if he was talking about his visible differences and became angry, he ran away to avoid crying. He further stated when he was questioned about his appearance, he immediately interjected and began telling his story. Although CR did not want to tell his story, he stated that it was a necessity because others wanted to know his story. His preference, however, was to be left alone.

When asked to identify one thing he would like to change about himself, CR indicated that he would change his face.

Table 5

CR’s Responses to Initial Interview Questionnaire

Questions CR’s Response

How do your peers respond to your visible “Really angry . . . And then after when I difference? (Do you have people talk am really angry coming at people, I just about the way you look?) turn around and run away because I feel like crying really bad.”

What do you say when others ask about “I say will you please leave me alone.” what happened to you?

What do you do for fun? “I . . .I like to draw, and I color a lot of coloring pages. I like to watch TV and be” lazy.

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Table 5 continued

CR’s Responses to Initial Interview Questionnaire

Questions CR’s Response

If there was one thing you could change “My uh face.” about yourself, what would it be?

What do you do when others talk about the “I go and tell staff.” way you look?

How do you feel when others talk about “Mad and upset. And sometimes I tell the way you look? them uh . . .I already know the question. I know, I know uh . . . I had surgery a lot. Almost close to 30.”

(Probing) Do you normally talk/tell other “Usually I don’t want too but I have too. people what happened to you or just or . . . Uh . . . because uh . . . everybody you don’t? wants to know about me.”

Story-Creation Process

The six sessions when CR and I worked together were not consecutive because the researcher had unforeseen eye surgery. It is also important to note that the participant missed several sessions because of issues related to his visible difference. The camera also cut off on one of the sessions and one observation day was not viewed by the observers because the computer nor the back-up disc would play the video. Furthermore, CR was unable to read his story to others because he was discharged from the hospital before the task could be completed

(see Appendix H for CR’s Figures).

CR’s Video 1

The session began with informing CR that he will create his story’s main character. He thought his character should be a girl. He was told that he could write his story or create his character as he wanted and that and anything he created could be changed up to a particular

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point. Explanation was also given to CR that a story had a beginning, middle, and an ending. CR responded that everyone knows a story has a beginning, middle, and an end. Various types of media were available to create the story and these were identified for CR. He then chose a marker and decided aloud to draw the ground first (see Figure 1).

He started his task by selecting a pencil and a ruler and apologized for hitting the end of the page with his pencil. Assurance was offered that it was okay and he moved on and selected the brown marker for the ground he has chosen to draw. CR filled the bottom of the page with brown, placed the marker back in his container and said he was ready to start on the grass. As he was drawing, CR had one elbow on the table, and used a ruler to draw a line with his pencil. CR noticed an unwanted image or “design” on the back of the paper he was drawing on (from the tablet). He was assured that the image would not be in his final book, and he continued drawing.

As he drew, he tampered with the tip of his pencil appearing to lose focus. To redirect CR in his task it is explained that a sharpener was available, and he used it and proceeded to draw.

As he was attempting to use the electric pencil sharpener, it was explained to ZJ that a regular hand-held pencil sharpener was also available if he desired to use it. CR did not respond concerning the sharpener but rather explained that the character he was creating was the “She-

Hulk.” He said the She-Hulk had accidentally killed someone. As he discussed what was happening, he switched from using a pencil to a red marker, and offered the explanation that one of his characters was bleeding across the face. He then switched back to using a pencil and stated that the She-Hulk had done something to the cops. A question was poised to CR as to how the

She-Hulk was like him. He responded saying, “She-Hulk “looked different.”

As the discussion of the She-Hulk continued, he was asked how other characters might be included in his story. CR responded by saying he knew what he wanted his story to be like. He

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was asked if he knew how the beginning of his story would go and whether he wanted to write or draw his story first. CR did not respond to the question directly but verbalized that he could draw captions. CR then gave me an explanation as to what captions were and described what he wanted to place in his story. He explained to me that the She-Hulk started out by saying, “Oh man, I killed a kid” as an example of a caption. CR then drew with his pencil explaining that the markings on his paper were made from the She-Hulk crushing a car (see Figure 8). He then looks up at me and explained that, when the She-Hulk calmed down, “she turns human.” After drawing for a few minutes, he looked up and stated that the She-Hulk met a man Hulk named “Bruce.”

CR lowered his head to draw again, but looked up, pointed at his picture, grabbed his hair, as if a light bulb went off, and said the character, the She-Hulk, was “Jan(e).” He turned his tablet around and identified how he was going to spell Jan’s name. ZJ was told that it was okay to spell

Jan’s name without an ‘e’ and he stated that he could spell the character’s name any way he wanted because it was his book.

He then started drawing a cop car and appeared unsure about what he was drawing.

Assurance was offered again for this particular dilemma, that the drawing is indeed okay and he proceeded to page two (see Figure 9). While he was drawing, he let me know that the car would be shown to others. The subject changed when CR was asked how his visible difference would be placed in the story. CR responded by saying that when the She-Hulk turned human, her face would look like his and she would have surgery, “Kinda like me,” referring to himself. I reflected that he had a lot of information in his head, and was reminded to take his time.

CR explained that his drawing had a background. He stopped for a moment and told me he was writing, “welcome home” (see Figure 10). He turned to another page while he was talking, and explained he was working on the inside of the house (see Figure 11). As CR

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continued drawing, he erased and laughed because he has written the word “Jane” instead of

“Jan” in the elevator image he was creating. In the elevator image CR placed arrows that he stated goes “every which way.” It goes four different ways and the arrows represented drama and going to every room, even the secret lab (see Figure 11). After CR explained his elevator scene, he talked about the lab he had started to create, but he jumped from one topic to another. He let me know the house was “bullet” proof , that Bruce takes pills to stay calm down, and Bruce was making perfume because he was about to be married to the She-Hulk.

After his explanation of the impending marriage of Bruce and the She-Hulk, CR explained bombs were being made to go to various planets. As he was describing and drawing these images, he began making noises simulating the bombs going off (see Figure 12). He also drew the sun which he reported could blow up.

After completing the image of the sun CR turned the page, and reported that the She-

Hulk was getting mad. He explained that one should not want to make the She-Hulk mad. CR also explained Bruce is attempting to find a cure for Jan to stop her from becoming the She-

Hulk. After a few moments, he put his pencil down and turned his book toward me and explained what he has drawn.

He was asked if he wanted to add anything, and CR responded by telling me the She-

Hulk was telling someone not to look at her because she was going to turn human (see Figure

13). He continued on with his discussion stating that the She-Hulk does not like it when people look at her. CR then announced that the scene he had created was finished and gave me permission to look. While reviewing the image, CR described the scenes from the beginning of his story, explaining Bruce (the Man Hulk) does not want to get mad because he loves his children (see Figure 13). He then made an inappropriate remark about Jan exposing her breast.

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The remark was disregarded and CR was asked if he would be able to remember his drawing for the next session. CR said he would remember and would want to continue by drawing pictures. It was then explained to him that the book needed to be understood by others and he created a pseudonym for himself, the Hulk-Man. CR then placed his pencil back in the box, and asked if the materials he was working on would be left in the room. I assured him his materials would be safely stored and not left in the room.

Memo one. On this first day of memo writing, I noticed that CR started working on his images immediately and had to be told to focus on telling a story rather than just creating images.

Also acknowledged in my writings was the comparison between the subjects in the case studies.

It was more difficult to direct CR than ZJ and I found it necessary to consult with the mental health professional monitoring the project on how to proceed. She encouraged me to allow CR to continue drawing pictures and to form a story around the pictures he created.

CR’s Video 2

CR was told he would continue creating his pictures and stressed the importance of his audience understanding the story. As he drew, he was asked about his day. He was having a

“good” day, and took notice of the unwanted design on the back of his drawings. CR recognized where he left off from the previous session and said “this is a little like reading a book.”

While CR worked, he stated that Bruce and Jan are sad because Bruce had not seen his father in a while and he missed his dad. He continued to draw a few seconds more, and explained he had drawn a Mohawk on one of the figures (see Figure 14). CR also uttered that one must be careful when mixing chemicals. This comment was what the She-Hulk was thinking, CR explained. Speaking again, he stated, “I better be careful” (see Figure 14), and went back to his explanation of the Mohawk image. Finished with the explanation of Bruce, his father

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and the Mohawk, CR explained what he was writing in the bubble captions he had created (see

Figure15).

When asked if he was still at the beginning of the story, he replied that was he was in the middle portion. As the session continued, he started discussing one image stating, “I am going to make her head big that way you can see my…her difference.”

He turned the tablet towards me. Reading the drawing I sang, “la la la,” the words CR had on the page (see Figure 15). CR took his tablet, turned it around, and started to draw on the same page. He turned the page and said that Jan got ran over accidentally, but was not hurt.

Continuing the discussion of his image, CR stated the sun was sad because a truck ran over the

She-Hulk (see Figure 16). Drawing still, he began to say, “Hot, hot, hot,” over and over again.

Once CR told me know that the sun was dripping hot tears, he told me that the sun stopped crying and started yelling, “She’s awake,” several times. After making this statement, he said he was making a moon in a solar eclipse and identified the sun as a girl. He went on to explain the solar eclipse of his moon (see Figure 16). CR took his hand and wiped his face and nose. He was asked him to stop drawing so his work could be reviewed. While his work was reviewed, CR attempted to explain his images. For clarity, he was asked what the main story was about. CR explained that “Jan is trying to be good, not mad, that way she does not hurt anyone.”

CR was asked to consider that he needed to show what he was trying to convey so the story could flow and could be understood by others. He attempted to explain where his story went next. In his explanation, he said Jan was going to try to meet other people, and try to make a friend. He said aloud, “Jan is already up.” CR then drew some more and then turned his paper to me and said “that’s her purse” (see Figure 17). He continued to draw and talk simultaneously and he gave the store a name, “Seventh Heaven.” He then covered his left eye and told me he

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was drawing the inside of the store (see Figure 18). Blocks were books and movies were in the store too. As CR continued to create, he exclaimed, “It sounds like it is raining.” When asked to be a bit quieter, CR continued with his task explaining as he went along. The tablet was turned towards me so I could see his progress. He then turned the book back toward himself and continued to draw, still explaining along the way. In the midst of all this he said he was hungry and asked for the time.

When time was almost up, CR announced he was ready to stop. I explained what would happen in the next session. Words and pictures would be matched up and reassurance was given that the books would be completed and read to his family. It was also explained that two copies of the book would be made. CR repeated these explanations in his own words.

Memo two. Today it was difficult to assist CR in the writing process, noting that writing appeared to be frustrating for him at times but it also seemed to be helpful. At the time of this notation, I saw CR as recognizing that he needed to help the readers and audience know what he is trying to convey in his pictures.

CR’s Video 3

Session three started with me requesting that he start from the back. He was asked to begin writing the beginning of his story, and he described what he would like to write. It was explained to CR that he needed to identify how his character Jan became the She-Hulk and why she changed. He gave the explanation as to why this transformation took place and was instructed to covey what he had said in written form. CR proceeded to write.

As CR was writing, he stopped to ask how to spell the word “accidentally.” I respond and asked him not to worry about the spelling, so he continued with his writing (see Figure 8). CR

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then placed his left hand in his hair, covered his left eye, and continued to draw in silence. He turned his wrist a few times, as if he was thinking.

After a few minutes, CR looked up and said he wanted to write Jan’s name instead of the

She-Hulk in the front of his tablet. Assurance was given that it was okay, and he continued. CR then again placed his left hand in his face and covered his left eye. Eventually, he was asked if he could get to a place where he could stop so that a portion of his story could be read. He stopped writing and read what he had written while covering his face. He added more information to his story, but stopped when asked to provide an explanation about Jan’s anger (see Figure 9). This seemed to agitate CR and he did not appear to understand what he was being asked. To help him understand, he was given an example from the real Hulk movie. CR then let me know that he understood the analogy and reacted by laughing and writing an explanation about Jan’s anger in his tablet. He said, “Ok, now it’s there” and read what he had written.

Once CR finished he was asked what made the She-Hulk different. He explained that the

She-Hulk had been given a shot that made her DNA change and followed the explanation by adding the information in his tablet (see Figure 19). When I interrupt, CR told me he was not done and completed what he was working on. Once he was finished, he was asked if he had a picture for the text he had added, CR said “no” and started an image to go with his text.

CR talked to himself about his image and, after a few minutes of talking and writing, he turned his picture toward me and I asked what would happen next. CR told me that he did not know and began another image. He then turned the image around, and was told that he had already drawn what happened next. After this, CR was asked to write what his image conveyed.

While he wrote, CR covered his left eye, and placed his hand in his hair.

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Once CR began writing about his new image, he let me know that Jan had broken the bed which she was laying on. With this new information he had once again identified what was to occur next in his story. CR then reported that he would be finished with his drawing after he completed his next image. He told me that he placed zigzag lines on his image because Jan had broken a door (see Figure 20).

As he continued to draw and write, CR stated that Jan was ten times bigger when she was the She-Hulk. She-Hulk had broken the door which he had drawn on his tablet and cracked the television. CR then realized that an additional page of text was needed, and immediately began writing his next section. Once he was done, he turned the book towards me and explained his image. After the explanation, he was asked what happens next. He then explained what happens and wrote the information down.

Eventually, as he was writing, CR said he felt like going back to “rec” (recreation). He was assured that he was almost finished and that he would be returning to rec soon. CR then turned his tablet around for viewing and stated, “That’s as far as we are going.” An explanation was then given to CR on what would happen in the next session, and he asked several questions regarding the story-creation process. CR reported that he could not type but was reassured that it was okay. He asked about adding information to his story. His question was answered by letting him know copies needed to be made of his images before changes can be made. CR finished the session by saying, “Okay.”

Memo three. This was a short session and I recorded that CR was eager to participate in his recreational activity. In my notes, I acknowledged this problem by attempting to discuss rescheduling the time of our sessions. I also noted that, although CR wanted to participate in his

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recreational activity, it did not appear that he wanted to quit working on his book but that he had the desire to do both.

CR’s Video 4

At the start of this session CR did not appear to be in the mood for creating. He said he would rather participate in his recreational activity. Although he stated this, he immediately began to identify where he stopped in the previous session. Before he started drawing or writing he said that the She-Hulk was proud of the way she looked when she sees her image in the mirror

(see Figure 21). He was asked to read the last portion of his story. He began reading and realized that he left out the word “in” in his sentence. CR then makes the correction and continued reading.

After CR finished the last sentence that he had written, he read a few additional lines aloud. He was then instructed to write what he said down on paper. As CR proceeds to write, the pencil lead breaks and he uses the hand sharpener to sharpen his pencil. While he was attempting to use the sharpener, he finds it difficult and then tells me that it was not working and then uses the electric sharpener instead. With his pencil sharpened, he adds additional information to his story.

Once he stopped writing, he was asked about the next thing the She-Hulk would do. CR says the She-Hulk ran into the desert never to be seen again (see Figure 22). He was asked to recall some of his book to get a clearer understanding of what was taking place. Before doing so,

CR said he just wanted to make his last few pictures and started to draw. While he was drawing, he talked about the She-Hulk breaking a door and also verbalized that individuals in his hospital image were yelling. At times, he also made comments regarding the image he was working on and explained what would be on the preceding page. In his conversations to himself, he reported

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that the She-Hulk had “calmed down and she has a stretchy dress that goes all the way to the top.” He also stated aloud that the She-Hulk was sad because she missed Bruce, her husband. He then voiced that he was making sand that blew in several directions. He also created a tornado which would pick the She-Hulk up (see Figure 22).

After completing his desert scene, CR said, “I’m glad that’s over with” and then was asked to look it over and to write his ending. He replied that he was getting ready to write the information before being spoken too. As he contemplated what to write, he looked up and said

“there are two ways to spell desert.” After he finished speaking an explanation was given to CR about what would occur in the next meeting and there was also a discussion on what time was better for him to work on his story. CR agreed on a time for the next session, smiled, and reminded me of his dinner times. We discussed his pictures, and identified that he needed to match some of his pictures with his writing. CR then suggested tearing the pictures out of his tablet, but this was discouraged. CR knew that it was important to keep the pages of his book together so that pages were not lost. It was explained that the pages would be copied and he would be able to color those images. CR then asked if he could just color the images in his tablet.

He was told “no,” and given the explanation that mistakes could be made that he would not be able to correct. CR then closed his tablet and said “Oh, okay.”

As CR closed his tablet, he was told that his pictures would later go into the computer.

CR opened his tablet and erased something in the front of his tablet. He reported that he wanted to use the word “Jan.” CR was told that he could use that name and was asked if he wanted “Jan” to be the name she’s called when presented in the dissertation. CR responded with a “yes,” and requested that others know not to place an “e” on her name when the dissertation was presented.

He then spelled the name Jan aloud and the session ended.

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Memo four. Memo writing on this day revealed that I was trying once again to assist CR in getting his story to flow. I also recorded that CR let me know that he does not want to write portions of his story down because of how they made him feel and his response to those feelings.

CR’s inability to discuss his feelings affected his ability to separate himself from the character in his story. I recognized at this moment in time how deeply concerned CR was about his appearance and how he was perceived by others. I noted that the video camera stopped as CR was intensely discussing how he was made fun of by others and the questions they asked. I let him know that many people asked me similar questions about my own visible difference. One question I wrote down was, “What happened to your eyes.” I then wrote that CR took advantage of me acknowledging this question because he then let me know he was wondering about what happened to my eyes. I did not say whether or not I told him what happened to my eyes, but I did record that I let him know how I respond to others when asked the same question. As a final note, I made an observation between ZJ and CR and identify that although working with CR appeared to be more difficult than ZJ, yet I seemed to be learning more about CR than ZJ.

CR’s Video 5

At the start of this session CR was reminded that he would be matching his pictures to his words. Two copies of CR’s images were brought for him to work with. During this session, he was assured that, if he made a mistake, it could be corrected. Some of the pictures had been enlarged and this was explained to CR. He was informed that if he did not like them they could be changed. CR commented that he liked the enlargements and wanted to know if we would get on the computer to place what he had drawn and written. CR is assured his story would be placed in the computer that the timing of placement of the pictures and text in the computer depended on his progress. Getting his pictures and text correct was important CR was told.

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After our discussion, CR was given his copies of the story as well as his tablet so he could expand on his text and pictures. CR then fumbled with the pencils for a few seconds, and finally made a selection. Two pencils were selected. CR laughed, said that he had chopsticks in his hand, and pretended to write with them. After a few moments, he placed one pencil down, stacked his books together, and pointed at the ‘Unknown,’ a character he had drawn for his book.

As he described the Unknown character, noticeable black marks on his paper were observed and

CR was asked whether he wanted the marks included. He did not want them included and he was informed the marks would be eliminated. After our conversation, CR announced that the

Unknown was stealing candy, while attempting to depict the image (see Figure 1). CR stopped and looked up at me, and I instructed him to add text to his drawings. CR noticed more marks on his paper that he did not make; the marks were probably made by the copier. He was told the problem would be fixed, and as I talked, he reached over to check the original images laying in front of him. As he was looking at the images, he told me that he found no markings on his original pages.

After CR checked his images, the undesired marks were no longer an issue; he changed the subject and reported that he got to go out on a four-hour pass. He also reported that he got to play his video game and let me know he wanted to come back on a particular day to have “fun.”

He then moved on to another subject and discussed cleaning the pool at the hospital, and playing in it with his peers. Once a few moments have past, CR got back on task stating he was going to take a part out of his book and replace it with “The Unknown.. He then told me that he did not want to use the word “stealing” in his story, but instead would use the word “take” to describe what the She-Hulk was doing. CR then wiped his nose and continued writing. While he wrote,

CR decided to eliminate another portion of his story and replace it with, “Jan grows big and

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green” (see Figure 8). CR was supported to make this change. When CR stopped writing, I asked what he had written so far. He then wiped his face on his shirt, and described where he was in his story. When he finished describing what he had written, he was asked if all of his drawings described what he was writing. CR did not respond but started to erase and write again. Once he completed his drawing, he stopped and looked up at me. I reviewed the image and his writings then asked CR to talk about his next picture.

When describing his next picture, CR revealed that Jan was feeling sad (see Figure 9).

He was asked whether or not what he was discussing would be in the next written section. CR said that he did not know and began reading the text on his next page. After he completed his writing, he was asked if he wanted to add any text to his image. He then reported that he did not want too and was reassured that it was okay. The next image was reviewed, the house (see

Figure 10). CR copied the text to his image. Once he completed the image he moved to the inside of the house (see Figure 11), describing as he works, how he wanted the inside of the house depicted in his book. He then completed his additions and placed his work in a pile next to me.

Before starting his next image CR discussed Bruce’s lab, and how it connected to the story. As he explained his image, it was suggested this information be included. CR touches his forehead with frustration, says “okay”, and wrote what he had on the back of his image. As he was writing he was speaking aloud. While he was doing so he informed me that “elev” stood for elevator (see Figure 11). Once CR finished, he placed the image on the pile beside me and started on the next page. He then said aloud that Jan was upset because her shoes did not fit (see

Figure 12). He was reminded to make his story flow and CR reviewed his next image for clarity and to ensure his story flowed. As he began talking, CR explained that Jan would look “Ugly,

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kinda like me”. He also explained that the character Bruce was in his room taking a nap and the

She-Hulk was taking care of the kids, and she was upset because Bruce was not helping.

After his comments about the She-Hulk and Bruce, CR wrote what he wanted to say on the back of his image. While he’s writing he asked how to spell the word “really” (see Figure

13). It was spelled for him and he was informed that any misspelled words could be corrected by the computer. CR finished the next page and was asked what was taking place on the new page.

He let me know that Jan was reading a science book and was dreaming of making chemicals (see

Figure 14).

I attempted to make CR understand the concept of making a story flow. We reviewed the last page together to clarify what was happening. Text was added to clarify and he moves on talking out loud about what he was writing. He stated that Jan and Bruce knew a lot about explosives and said he was abbreviating the word “little as lil” (see Figure 14) and continued to write. He then pushed the paper to me, and the camera stops.

Memo five. During this memo writing day I expressed my difficulties of having CR create a story line without influencing what he was trying to convey in his writings. I also noted that in this session CR story constantly changes and that there continued to be little order to what he was trying to say. Another comment I made regarding this session was that CR needed to keep his character appropriate as he tried to expose the breast of the She-Hulk during the session. A final note that I made regarding this session was that I may have slowed the process of story- creation down by asking CR to outline his images. My observations revealed that he appeared to focus on outlining rather than completing each page.

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CR’s Video 6

At the start of this session, CR told me I had been identified by a staff member as his therapist. He responded to the remark by stating I was not his therapist. I concurred that I was not his therapist and continued to listen to CR. After this explanation he stated he would add color to his image and, as he began, was given a new set of thin and thick markers to accomplish his task.

CR liked the thick markers and began coloring. He selected another marker from the box, but immediately put it back, banged it shut and reopened it and selected a red marker instead. CR was told that he could pour the markers out on the table if he desired. He accepted the suggestion and empties the markers on the table and proceeded to work.

As he continued to color his images, CR described what he was coloring out loud. He made a comment and said I did not have to color but just had to watch what he was doing. CR then realized his pictures were enlarged and also noticed that a portion of Jan’s arm was missing from the image he was working on (see Figure 8). As he continued to look over his copied image, he also detected marks on Jan’s arm and head. He commented on the marks and added the missing arm to the image. He was given his tablet to confirm whether or not CR had placed marks on Jan’s head. Before the image was checked, CR verbalized that he did not place the marks on Jan’s head, but, when he reviewed his initial drawing, he realized that he actually made the marks.

After realizing that he made the marks to Jan’s head, CR said he wanted the marks removed, and I said that I would try to remove them. CR then began describing the picture he was working on (see Figure 13). While he was working on the image he asked me about spacing.

He then makes a “grrr” sound and said, “I don’t want to kill you, grrrr.” As he continued

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drawing, he also said, “Jan will kill people.” He then started a discussion on the colors he would use to complete the image.

After CR completed the drawing he had been working on, he asked questions about placing his colored images into the computer. He was informed his colors would not change when his images were input into the computer. CR continued coloring and began discussing the stars he was adding (see Figure 8). Coloring and talking, a weather siren sounded in the background, but it did not seem to faze CR because he continued to color and started to identify the colors that he was using. He accidentally colored on the table and tells me he sometimes colors on other things, but does not mean too. To reassure CR it is explained that the marker stain would clean up.

After being reassured that the markers would clean off the table, CR told me he had eaten a crayon in the past and other inedible objects. He stopped talking for a few moments then goes on to state he once colored on a lot of things. CR then changed the subject and discussed staff members.

Once CR got back on task, he began to describe the stars in his picture, but asked why I was not in attendance when the treatment team meets. It was explained to him that I was not a part of the team. More information was provided by CR. He let me know he had been to this particular mental health facility before and, during that period made it to one of the top levels of the hospital in a few days. In the same breath, he let me know he was also demoted from several levels very quickly. As he continued the conversation, he explained to me that he had been doing well until he hit someone. Asked whether or not his peers had made him angry he let me know that they had indeed triggered his anger. He goes on explaining almost everything can “tick him off.” In response, he is asked if he was working on anger issues. CR confirmed that he was and

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he was using a toy he called “Bumblebee” as a “coping skill.”

After our discussion on CR’s behavior, he showed me his picture and I suggested he outline it to make his image pop out on the page. CR liked this idea and began outlining the images. After a few moments CR is told the book is very colorful and also informed the thin markers could be used to assist with outlining. CR acknowledged my comment and continued to outline for a few minutes silently,

Once he had colored for a few moments, CR asks about the extra image copies I have placed in front of me. He leaned back in his chair and said he wanted to keep a copy for himself.

Assurance is given that he would receive a copy when the book is completed. CR responded by saying “okay,” and colored the second page (see Figure 9). CR continued to outline and color for a few minutes, showed his completed image, and started on page three (see Figure 10) of his storybook.

CR did not talk as he worked on his new image, but he eventually speaks as he added shingles to the house he had drawn (see Figure 10). As he finished with the outlining of the image he shows it and is asked if he would add color. He answered saying color would be added at a later time. Work proceeded has he outlined the fourth page in the session (see Figure 11).

The time was checked, and CR said he was missing a medication group on his unit. He finished outlining on the fourth page and started his fifth (see Figure 12). I realized that time was almost up, but did not stop the session. He talked about a bomb was going off and a potion being made in the lab. He finished outlining the drawing and asked if he would be able to finish the drawing and then the session ended.

Memo six. On this day, I noted that I was starting the story-creation process once again with CR after his eye infection, my eye surgery and an outbreak of chicken pox on the units.

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Before continuing sessions with CR, I met with him to see if he wanted to continue with the research project. He confirmed to me that he wanted to and with the permission of the mental health professional we started again. I was relieved he wanted to continue.

CR’s Video 7

CR was being told what would happen in the session when CR interrupted saying he would be working on outlining and coloring. His remark was acknowledged, but CR was asked to start on placing his images into the computer. He asked me about typing his information into the computer. CR was given his images and requested that he add color to his previous images.

He wanted the other drawings that were not in the stack that he had been given. Again CR was informed that entering his images into the computer would ensure his book could be completed.

It was stressed it would take time to accomplish this task. CR confirmed that it was okay and grabbed the thick markers. He changed the subject and stopped to ask if the video tape was necessary for the sessions. CR was told the purpose of recording but then asked if there were other participants in the research. I responded by saying “yes” and he continued to draw.

After a few seconds of drawing, CR reported that he was leaving his stick figures “blank” and announced that the copier should be hated because of the marks being left on his images. He was then reassured that the marks would not be on his finished product. As we continued to talk,

CR asked if he wanted his book cover to be a hardcover or in a comic book format. CR chose the hardcover, but said he wanted a soft cover too. When it was acknowledged that both could be done, he began coloring and discussing his image once again. As he was coloring, a reminder was given to keep the character, the She-Hulk, appropriate by avoiding making her naked. He acknowledged the comment and began discussing what he was going to have for dinner.

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Finished with the discussion about dinner he changed the subject and talked about a movie he had been watching. The subject of the conversation changed again this time informing me I picked him “up on time” for the session. Out of the blue, he went back to discussing the movie he was watching on his unit and then returned to the subject of the image he was working on. He reported when Jan was a little girl, her hair was brown, but, in the hospital, it changed to blond. CR stopped coloring and said, “if only we had those hospital parts.” He was told that the images were brought to the session, and they were shown to him.

After viewing the image for “parts,” CR then wanted to know about his other images and it was acknowledged they were in my possession as well. CR then continued coloring his image and reported the image he was working on would be like his first page (see Figure 9). The image was pulled out so he could use it as a reference. He began coloring again, describing his

“glowing” stars. In the discussion of his image, he began talking about the lunch he had and going on a five-hour pass. He also let me know that he had improved his level and would be on level “blue” soon. He was given praise for his improvement, and CR replied in turn, “no, that’s super good.” I then repeat the words super good to CR and he smiled and continued to color.

After a few minutes, CR began to talk about a peer, and switched the subject back to the movie he intended to watch on his unit, and wanted to know if I would watch the movie with him. Without allowing me to answer, he began talking about a staff member and his therapist. He once again informed me that I was not his therapist but his “book therapist.” CR was praised for taking his time with his image and he proceeded to talk about the movie he desired to see. As he discussed the movie, he was asked what kind of cartoon he would be. He said he would be a character that was half-human and half-demon. When asked why, CR told me that the character

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had a sword and could kill one thousand demons. He described the various things about the character including what the sword could do, the clothing of the character, and more of the story.

When asked how the character was like him, and was told they were just like him,

“mean,” like he used to be. CR started telling me that he used to mess up his things and would blame his siblings for things that he did. After that, he started coloring again and rubbed his left eye several times. While he continued coloring, he was asked if he would change to be another character, in the movie he selected, to avoid being mean. He stopped coloring and told me with his character’s powers, he would make people stop being mean to each other. As he continued, he spoke of various powers the sword of his character possessed.

As CR started coloring again, I responded to a noise outside the room, and CR said the noise did not come from the room. He then returned to coloring and said we were “just talking and having fun.” The topic of the noise continued to come up again, and CR began discussing book editing. He asked if typed words could be added to the comment bubbles in his story. He was told that there should be enough time to place words in his bubble comments. He then picked up the markers and asked if time was up. He was told “no,” and he put the markers down and began stacking his pictures. CR was told that he was working hard and he placed the stack of completed images in front of me. He returned to coloring for about five more minutes and then was told time was almost up and he responded by saying “no,” and identified that he had one last thing to complete on an image. CR then took the markers and put them in the box, and the session ended.

Memo seven. On this day of memo writing, I became increasingly aware that CR was taking a long time to complete his images. Therefore, I asked him to complete each picture that he was working on in an effort to begin placing finished images into the computer. During this

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session, I also discussed the cartoon CR described and pondered if he had chosen a character who was half and half because of his visible difference.

CR’s Video 8

CR was eager to start this session. Before sitting down, he took out the thick markers, placed them on the table, and was adding color to his picture. He looked for another colored marker on the table but could not find what he needed and proceeded to look in the marker box to find the color he wanted. As he was coloring, CR began discussing the image and the color he was using. After a few minutes, he leaned back in his chair and reviewed his image.

While he colored his image, CR asked why I did not have control of my left eye. I explained to him that my dancing eyes were caused by an accident during surgery. He responded by saying “that was a bad thing to do.” After this interchange, he continued to color, made singing noises, and named the colors being used. He made a comment about being hit in the eye and nose. His remarks were acknowledged, and he stated once again that it did not hurt but it

“stung.” When asked if his eye watered, CR told me his eye watered all the time. He then began discussing different times he had been hit in the nose. He said that surgeons were going to turn his nose a little with surgery so the right side of his nose did not bleed as much as it currently did. CR was then asked what he thought about surgery, and he reported that he was “knocked out” during surgery. Again asked about going through surgery, CR reported that he thought about “looking better.” He then turned in his drawing of the house so it could be reviewed. (see

Figure 10). CR was complimented for his good work.

When CR’s surgeries were discussed further, he was asked whether or not he got

“scared” or “nervous” before surgeries. CR said “no” because he’s “knocked out,” and he could feel anything. He demonstrated by pretending to fall asleep. This elicited laughter and CR was

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asked about the amount of surgeries he had been through. He said that he had had numerous surgeries, so many that he could not count. He explained when he was born the entire right side of his face was covered. He went on to say that his eye was completely shut at birth, and was not visible to others. He said that surgeons opened his eye a small amount and that they were trying to take “the bad stuff out and leave the good stuff.” CR told me I had “most of the good stuff” and then continued his discussion about his eyes informing me that the nerves in his eyebrows were cut. I explained to him that we had something in common because the nerves in my eyes were also cut. CR then looked up as the similarities were demonstrated to him.

After showing CR our similarities, he changed the subject and started talking about his nose bleeds and his eye watering a lot and stated that “stuff” comes out of it. He continued to color as he talked, and changed the topic to identifying primary colors and said that he wanted to be able to write with both hands. As he jumped from one topic to the next, he started discussing the stars in his image and also noticed the television he hears in the background. CR continued coloring in spite of the noise and stated that he was adding dots to his image. He then said he did not want to finish but would attempt to complete the task anyway.

As CR continued coloring, he was asked if he liked the way his book was turning out. CR responded by saying, “I don’t know” and continued to color. He asked about the days chosen to conduct the research. It is explained that the days chosen were the days he did not have much to do. CR acknowledged that I came every week, also stating he had a lot of work to complete. He was informed that he was almost done, and if an additional day was needed to complete his images it would be provided. CR told me he was finished coloring for the day. As he completed the task of tidying up, CR was told the number of sessions left and he was reminded him that on the last day he would read his story to his grandmother.

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Memo eight. On this day of memo writing, I see CR as not being engaged in the session, and he let me know that he did feel like participating. He also let me know that he felt like quitting. I am somewhat discouraged by his comments but, as he continued to participate in the session, I am more relieved.

CR’s Video 9

At the start of the session, CR was getting tired of coloring, and addressed this concern.

He was told instead of coloring, he could place his text into the computer. Some of the finished images had already been input in the computer by me. Instructions were given to CR on how to use the computer and he was shown the images that had already been inserted. CR said he knew how to use a mouse and yet listened to the instructions. As we looked at the images in the computer, CR was asked if he liked his images and he responded “yes.” CR then was told he would add his text and the text box on the computer was pointed out. While he observed, a demonstration was given to him on how to type the words into the text box. Instead of commenting on the text box, CR looked at his images in the computer and said that he thought his pictures would be bigger. He was told that the images would be bigger when his book was completed. To ease his mind, he is shown a notebook to give him an idea of the approximate size of his book and pictures. CR indicated he understood. He was told his bubble comments had been taken out of their bubbles and he would have to reenter the comments via text so that his readers could read his comments. It was also explained to CR that his words could be in various designs or fonts. CR said that he wanted cursive text. He was informed that he would be able to view various types of fonts. CR stated again he really wanted cursive and this was acknowledged. Once he was reassured that he could use the cursive font, CR entered information in the computer using the one-finger method.

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While he typed, he asked questions. Many of his questions concerned the use of the space bar and how to make an apostrophe. I attempted to assist CR, but the attempt did not work. He tried again and was able to complete the text. After typing for a few minutes, he looked up and explained that he had pressed the space bar accidentally. CR was assured that it was not a problem and the backspace key could be used to correct his mistake. He was reminded that he could ask for help at any time. CR acknowledged my statement and continued to type. CR was told that he did not have to be concerned with misspelled words, for they could be corrected. CR responded by saying “okay” and continued entering text into the computer, but appeared to be unable to see some of the words on the computer. He then stopped typing. His work was reviewed and adjustments (the font was reduced) were made to reassure CR that all of his text was being written as he typed. I took note that CR easily learned computer process and praised his efforts. CR completed his first page and started the next one. Before he began a new text box,

CR adjusts the text box, making it larger, giving him the ability to see the text he was typing more clearly. As he continued to type, the camera turned off and the session ended.

Memo nine. On this day of memo writing, I acknowledged that I had to speak with the mental health specialist about the research. In my discussion, I had to let her know the difficulties I was having keeping CR interested in the project. She let me know that I should attempt to start the computer process with CR and that was exactly what I did. This re-motivated

CR in the research process, and he was verbal and focused on placing his story into the computer.

CR’s Video 10

CR was told that he had completed sixteen pages and then he was shown the hardcover pages that he would use to form his book. A demonstration was given on how the pages would

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form his book. After showing him what he was about to do, I requested that CR complete at least one color page before the session ended. The gluing process was then discussed with CR and he was informed that any color could be chosen for his book. CR began gluing his first page, and asked if the glue was washable. Reassured that the glue would wash out, he stated that gluing was a “hard” job. As he was talking, CR was directed to place a liberal amount of glue on the pages to ensure the pages would stick together. He was then handed another page to glue and then began to complain about the glue. Done with the complaint, he completed his second page and started the third. The third page was handed to me and another was started.

As CR continued gluing, A book was placed on his finished glued pages. Once his final page was complete, CR attached all of his pages together. It was explained that his pages should all go in the same direction. While placing the pages in the same direction CR said that the process of creating the book was “creative”; he was praised for the work he had completed.

While CR was completing the gluing process, He was told that if any images were completed during this session, they would be placed in the computer so that everything would be ready for his completed book.

As he continued to glue, CR asked if he would get to read his story to his unit. He was told that permission would have to be granted first. CR is given a reminder that he would be able to read his story to his family regardless of whether or not his unit would be able to hear his story. A book was then placed on top of CR’s finished pages to assist them in binding together.

As we proceeded through the session, we discussed cleaning the glue off the table. In the process of cleaning, CR told me that I could have an origami flower he has made. The flower was accepted and we got up to obtain paper towels from the bathroom to clean the glue off the table. Done with cleaning the glue, CR was presented with his unfinished images. He said he

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wanted to keep a few of his images outlined in black and white. He took out the thick markers, and I made sure that he did not want to add color to his images. He confirmed his choice and outlined his picture in black and white. After coloring for a few moments, CR let me know that he would color a portion of his current image. It is explained the images could be however he wanted.

He seemed to have second thoughts because he asked if color could be added to the images after they were in the computer. It was explained to CR that the color could be changed, but that I could not add an image and color it for him in the computer. CR then said “this sucks, having to do all this in one week.” He expressed he might not get to finish his book, but was assured there would be plenty of time to complete the project.

CR began telling me that he “assaulted” a peer and, as a result, would be staying in the hospital another month. No comment is made by me on this behavior but instead remind CR to take his time on his image. CR was asked to identify the color he would like to use for his cover page. He wanted a rainbow color, and I tried to find the title of his book. CR stopped coloring and I go through his tablet to see if the title has been added in the tablet. CR reported that he had not created a title but said he could call it “The Story about Jan the She-Hulk.” The title was then written down, and CR proceeded to color.

CR completed coloring page two and handed it to me. CR was given another picture to color. He explained that the color of the female character’s hair in his story would be purple and said that he did not want to add anything else to the image. CR was then asked if he felt like he was finished coloring for the day, and he answered “no;” he wanted to finish at least two more pages, so he is handed another image. When asked if he would prefer the skinny markers to complete the image he did not respond, but continued using the thick markers for the image he

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was working on. The thin markers were then placed on the table for CR to use and he continued to color in silence.

After a few minutes passed, CR was asked how he got along with people who picked on him. He replied by saying he thought about the “good” and that he laughed at what others said.

He continued, saying he laughed with them, not at them. He was then asked if he felt better when he laughed with his peers and he said, “yes.” I continued with this line of questioning, asking him how he coped with the teasing, and CR responded that he used his “Transformer” and transformed what others said and did.

CR talked about the various types of transformable toys and continued with his outlining.

While he outlined, he laughed and reported that one of the characters he has drawn looks like they have their tongue stuck out (see Figure 14). CR completed his outlining and reviewed the other images (see Figure 15). One image was found that had not been outlined and asked CR if he wanted to outline it. CR took the image, outlined it, completed it, took another drawing independently, and said that he would outline the image using the “skinny” markers. He then completed the page and handed it to me. Again, he was asked if he was finished for the day, and he responded by stating that he wanted to complete one more image and proceeded to take an image out of the stack of unfinished ones. He then began outlining and adding color to the uncompleted image. CR reviewed the image he has just completed and said he was done for the day. He then found another image he had not completed, finished it, and stated again he’s done for the day.

Memo ten. This session was the first session back following my own I surgery. On this day I acknowledged that my surgery was difficult to recover from and that there was also an out break of chicken pox that caused the sessions to be delayed even further. I identified CR as being

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open to continuing his book and that as he worked very hard on the pictures he completed during the session. I also noted that when CR was forming his book he appeared enthusiastic. I also wrote that he had assaulted a peer and even though he had been participating in the research, he was still having difficulty controlling his anger.

CR’s Video 11

The session began with CR asking me how to use the computer. He was told that he would first need to complete drawing his pictures instead. With his pictures in front of him, CR took out a marker from the box and began coloring. As he did, I discussed CR’s final page, the author’s page. When discussing the author’s page, CR reported that he did not know how to complete this portion of his book. He was informed that he did not have to write details about himself, but instead could write about something he wanted people to know instead. He began repeating, “Learn about the She-Hulk,” as if that was what he wanted people to understand. I laughed, and informed CR that he could write about the She-Hulk, and put a small amount of information about himself. CR nodded his head and told me that he needed to finish his picture.

He then asked me about how long he had to complete his book and he is told that it is preferable to complete it on that day and why. Not much of the book is left to complete and CR is informed of this. CR is also told that I would be speaking to this grandmother to set an appointed day to come and listen to him read his story.

After this discussion, CR said that the pages of his book had to be added to the hardcover book he had already completed. How to bind the was the next thing explained, along with informing him that he had participated in everything regarding the story-creation process with the exception of putting the adhesive pages onto the book.

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Once done with this explanation the final steps were explained to complete the book, and the finished pages were counted. Once the counting was complete, CR was asked about his day.

He verbalized that he was having a “good day” and identified the name of the new unit he was on. As he spoke, he informed me that he would be going to see a new doctor because his white blood cells were going down. I asked CR about his health, and he told me he had not been feeling well. I let him know I would call and check to see how he was over the weekend. The subject was changed and CR is asked about the “blue moon” that he was coloring. Without a direct response to my question, CR asked if I liked the teeth on his moon and was told it was imaginative. As we continued the conversation of the blue moon, CR told me that the moon had

“stinging tears” and that they were hot. He changed the subject and discussed the nurse on his new unit. As he was talking, he was asked why he had changed units. Instead of providing the reason for the change, verbalized that he would not be going to the acute hospital of the mental health facility, but instead would be going to a different hospital for further mental health services. CR was then asked when he was going to be discharged from the hospital. He reported that he would be leaving the next day but he did not know what time.

After we finished our conversation, he let me know that he had pink eye and began rubbing the infected eye. When he finished talking about his eye, he reported that he was going to give the sun on his image the pink eye as well. CR changed the conversation again and told me that the days that he had been working on his book were going by fast and that time goes by fast “when you are doing something different.” He was then asked how he was doing in his classes and how his peers were treating him. He told me that he was doing well and that his peers were treating him with “respect.” He then stopped coloring for a moment, looked at me and said

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the word respect loudly. After doing this, he apologized for screaming the word, and he was told that his actions were understood because of the emphasis he placed on the word respect.

After CR apologized for his loud remark, we begin discussing how hot the sun is expressing heat, which he said was raining down on the characters in his story. He described the shoes on his character, and stated that he was not an artist. CR was praised for his work and he stated that he did not think that he had done well. He was told that he would be surprised when he saw his entire book put together. He changed the subject and told me that his grandmother would be coming in two days to take him to a “regular hospital.” He was asked whether or not he would be returning to the mental health hospital and he reported that he would not be returning.

As the conversation ended, CR reported that he might be returning to the mental health hospital but that he would likely be returning to a different unit.

I let him know that if he did not get to read his book to his grandmother, the finished book would be mailed to him. CR identified which hospital he might be admitted to and the cause for his admittance. He reported that doctors might draw his blood because his white blood cell count was low. He was told that this was to assist in making sure that he was staying healthy.

CR then reported that he felt sick at times and, at that moment, he was also feeling sick. As he continued coloring, he informed me that there were also times when his stomach felt as though it was empty, even though it was full.

After discussing his health, CR talked to me about the image he was working on. He was making a purple sky for his “lunar eclipse” (see Figure 16). He was told to be careful about drawing on his other images, which were beneath the one he was working on. CR checked for marks on the images underneath and found marks on one of them. He then moved the images out of the way and continued to color. He told me that he may be going on an off-campus pass in a

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few weeks, but that it could only occur if he did not show “aggressive behavior.” Meanwhile, he picked up a marker and said that it was not working. A second box of markers was then located and the same colored marker that CR was using was given to him. CR stopped coloring and looked up at me and told me that, when he goes to sleep each night, his right eye begins to close on its own due to fatigue. He said that the process was painless.

While he was drawing, he talked about the markers he was using and let me know that he had made the color “hazel.” He changed the subject and reported that he must eat on his unit because of his bad behavior. CR returned to talking about his image and reported that he would make one eye of a character brown and one hazel, because that was the way his eyes were. An outside noise then disrupted the session and CR responded by looking out of the window. As the noise passed, he began coloring again, started singing and began a new image (see Figure 17).

CR discussed various subjects randomly and then returned to the topic of his eyes. When he returned to this topic, he told me that he was going to make the eyes of his character on previous pages he had worked on the same as the current character he was working on. Once he completed this image, he was told that he needed to outline his image to make it stand out. As he did so, CR began adding more images to his store picture. After he completed this image, he started on another and said that he may need another pencil and reached for one.

After retrieving a pencil, CR noticed a note pad on the table and asked me about it. He was informed that the pad was used to compile information about him after each visit. CR continued to outline his image of the inside of a store (see Figure 18). I then commented on his store shelves, telling him that they were high, but CR disagreed. As he continued to draw, he poured out the markers, completed coloring his image, and passed it to me. He started another image which took place in a hospital room (see Figure 19). CR completed the image of the

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hospital room within a few minutes and proceeded to draw the She-Hulk bursting through a hospital door (see Figure 20).

Once CR completed his She-Hulk image, he was asked to describe what he had drawn on the previous two pages. CR did not respond to my question but instead told me that he had two more images to complete. As he colored with thin markers, he told me that She-Hulk broke the television in the hospital after growing big (see Figure 21). He then began to hum and let me know the She-Hulk had hit her head on the television. CR then said that he was finished with his drawing and passed the image to me to view and placed in his finished image pile.

As he began his next image, CR stated it is the “Sahara Desert” (see Figure 22). He was getting ready to cover a large portion of this image with the color brown and was using a thin marker. He was then asked if he would like to use the thick brown marker instead, so that he might complete coloring faster. He told me “yes.” but as he drew, he said he was placing a

“tornado” and “the wind” in his image. CR was told what would happen next in the session. He was told he would be completing his exit interview, and attempted to identify a day when he might be able to read his story.

CR began to sing and described his tornado. He told me that it was a “dust tornado” in the desert. Once CR stopped singing his bologna and cheese song, he talked about the sky in his current image. He then switched the subject several times and told me that he once chased a peer until he caught him and punched him in the nose. When asked to identify a coping skill he could have used instead of punching his peer, CR did not answer. Instead he told me that the peer was chasing him so he started running toward him, and then the peer started running to the teacher, and that’s when he punched him. CR let me know that he was expelled for the incident. CR then finished his desert image and put up the markers.

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Memo eleven. Today I panicked. I did not know what was going on. CR gave me a lot of new information on this day and I did not know how to respond. I noted that CR was going to a new hospital and that I needed to figure out a day when he could read his book to his grandmother. I also noted that it did not seem like I had enough time to figure out this plan. On this finial day I saw CR as enthusiastic and diligent about completing his book.

CR’s Observations

On the first day of story-creation, CR was described as having a “flat affect” and a desire to keep what he created safe (see Table 6) He was described as “verbal” and “descriptive” with his words and drawings but slow to add written detail to his story. His pictures indicated destruction and violence, and he verbalized that he was blowing up what was in his character’s path. Observations on this date also reveal that CR verbalizes what he is drawing as he draws it.

For example, he identified that he was coloring the ground brown and using the color green to color the grass. Observers also noted that CR verbalized how he was somewhat like the character, She-Hulk. During this session, CR was viewed as being “creative” and “engaged” in the making his pictures. Observers identified CR as being sure of himself as he draws with little erasing. They also note that he was concerned about what would happen to his pictures once the session was compete.

On the second day of observations, it was noted that CR appeared to have concerns about how well he was doing and that he appeared “anxious.” His drawings continued to be viewed as violent in nature, and he indicated that a character had been run over by a truck. Observations also indicated that CR made his character’s visible difference larger that what he had first crated and that he had some difficulty making his story flow. During this day, it was also observed that

CR often covered his face with his hand and appeared to have issues with his nose and eyes.

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Observation of the day also revealed that CR continued to talk while drawing and that he voluntarily would show the examiner his work as he completed each page. CR was observed as being scattered in his thing process and moving from one subject to the next. On this day, observation revealed that CR had not seen his father in at least one to three years. It was also noted that CR took notice of the time.

The third day of observation indicated CR as exhibiting some frustration with getting his story structured and flowing. It was also noted that he appeared frustrated with the researcher at times as she tried to assist him with understandings and that he appeared tired. Although frustration was observed, it was also noted that CR appeared engaged as he began writing his story and that his thinking process was not as scattered as the previous day. On this day, observation also indicated that CR began talking about his visible difference and the research inquired on the information that CR provided. CR showed his pictures to the researcher and observation revealed that they were detailed. Observations on this day also revealed that CR appeared tired while participating in the process.

On the forth day, CR was described as “withdrawn but cooperative.” When discussing his book, he indicated that he liked his main character’s appearance when she transformed into the

She-Hulk and displayed her visible difference. Observations on this day also noted that CR indicated that he would rather be participating in his recreational activity rather than participating in story-creation and the researcher indicated that she would change his schedule to accommodate him. On this day, CR was identified as still having some difficulty with the writing process, being withdrawn, and worried about missing out on what his peers were doing. This day also revealed that CR was able to draw and communicate with the researcher at the same time rather but found it difficult to write and talk at the same time.

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During the fifth session, observation revealed that CR’s eye was swollen and that his nose was running. It was noted that CR needed clarification regarding the researcher’s role because his caretakers were identifying her as one of his therapists. The session also revealed that CR’s rapport with the researcher was developing. Observations on this day also indicated that CR called himself “ugly” and then attempted to take his words back. This session also revealed that CR intentionally let the researcher know that he wanted to change wording in his story, desiring to remove the word “steals” to the word “take,” changing the tone presented of the story. On this day, CR was described as having reduced frustration and being engaged in the writing process but having some difficulty with the storyline. Further observation revealed that the researcher continued to try to assist CR in making his story form as she directed CR in developing sentences for his story and guidance given was thought to be taken by CR without difficulty.

On the sixth day of story-creation, CR was identified as “cooperative” and “animated.” It was also indicated that CR verbalized that he was “finished” with a particular drawing but continued working on it through the session. Observation during this day also indicated that CR was reminiscing about his past experiences with crayons and markers. It was also observed that

CR verbalized that he hit a peer and acknowledged that same day that he was doing better in the hospital. On this same day, he discussed some of his anger issues and coping skills he used.

When discussing his images, CR was described as descriptive and having a desire to get them just right. He was also described as “passive aggressive” and often stated “I know” when provided with reminders by the researcher. Notes on this day also indicated that CR verbalized a desire to keep his work and inquired as to whether stories were used to help. In this session, observations revealed that CR was attempting to piece his story together and that he was

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attempting to verbalize various coping skills he might use when interacting with others when he felt that he was angered.

The seventh day of observations indicated that CR was focused on his coloring and was conversational with the researcher. In the conversation, it was noted that CR had violent cartoons in his book and that he related to one of them, the moon, which had superpowers. CR was described by observers as being in a good mood and cooperative on this day. During this day, it was noted that CR commented on the camera and continued to inquire about the role of the researcher. Notes also indicated that CR needed reassurance that his images were safe. On this day, observers not that CR identified that he was going on a pass and was doing better. Finally, it was noted that CR verbalized personal mistreatment of his younger sibling and identified the researcher as his book therapist.

On the eighth day, observations revealed that CR appeared to be distracted by outside noises. However, he was seen as “motivated” and ready to work when the session began. It was reported that CR was “singing,” discussed his surgeries, and developed some rapport with the researcher. Observations indicated that CR would be receiving more surgeries on his eyes and nose. In his conversation, he revealed that his eyes watered a lot and that he did have a desire to look better. He also revealed that he was not afraid of surgery because he was not able to feel what was happening. On this day, it was also noted that CR inquired about the researcher’s visible difference for the first time and that the researcher identified that she had something in common with CR. It was also noted that CR indicated the researcher had the “good stuff” and he had the “bad stuff” as related to visible differences. Finally, it was noted that CR said that he did not want to finish but continued to appear engaged in the process.

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On the ninth day, CR was identified as being less conversational and more focused. It was noted that CR’s pictures were entered into the computer and he began entering his text. Observations indicated that CR may have been frustrated at times but was focused on the task of placing information into the computer. CR was also identified as gluing his book together on this day and acknowledging that he hit a peer. On this day, he was asked to finish coloring and was described as appearing tired of the coloring process. It was also noted that CR wanted to complete the book and that he had been physically aggressive with a peer. Finally, observers note that the researcher was given a gift by CR.

On the tenth and final day of story-creation, observers noted that CR was going to be hospitalized and that he had been sitting out on his unit due to being sick. Observations revealed that CR appeared focused on finishing his book (see Appendix I). It was also noted that he identified laughing as a coping strategy to deal with teasing. This day also revealed that CR was having some difficulties interacting with peers and indicated that he had to switch from one unit to another as a result of his aggressive behavior. Observation revealed that CR indicated a desire to get respect from others. In addition, CR did not appear to want to discuss himself on his author page, and, although he did protest many times during the story-creation process, he appeared to put a lot of effort into the book he created. Further observation revealed that CR identified that he was making a character in his book have two different eye colors, just as his own. The coloring process observation also revealed that, although CR had difficulty at times maintaining enthusiasm with the story-creation process, he found that coloring made him “feel happy.” When

CR’s story was completed, he was “excited” about his finished product.

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Table 6

CR’s Descriptive Behaviors

Day

Behavior 1 2 3 4 5 6 7 8 9 10

Engaged * * * * *

Humor * *

Cooperative * * * * or compliant

Attentive * *

Animated * * *

Anxious * * *

Frustrated * * *

Focused * * *

Lacked * * focus

Tired or * * exhausted

Rushed/in a * * hurry Note. Days 1–8: Writing and drawing; Day 9: Computer input; Day 10: Finish book.

Themes that developed in CR work are exhibited in Table 8. On all but the final day of the research process noise was observed. Other themes that occurred within CR observations were, issues of safety, scheduling, covering of the face, the researchers role, discussion of the participants family, discussion of the participants own visible difference, discussion of the researchers visible difference, videotaping, anger, and story flow.

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Table 7

CR’s Themes

Day

Theme 1 2 3 4 5 6 7 8 9 10

Safety * * *

Self-disclosure * * * * * about visible difference

Scheduling * *

Noise * * * * * * * *

Discussed family * *

Covered face * * * * *

Inquiry of * * * researcher’s role

Discussed * researcher’s visible difference

Asked about * * video taping

Discuss danger * * * *

Difficulty with * * * * story flow

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CR’s Behavior Logs

At the beginning of CR’s staff observations, he was described as “getting along well with peers” and having “no problems” during the day. In the evening, his behavior changed and was identified as noncompliant. Notes indicated that CR was cursing and provoking others and was slow to respond to staff redirection. During the middle of the story-creation process, staff reported that CR was compliant with rules and had “no major redirection” during the day. During the evening, observations indicated that CR was interactive and needed “minor redirection.”

Toward the end of the story creation, CR’s behavior was described as provoking, argumentative, and slow to participate in activities. Logs also indicated that CR was cursing on this day and throwing items belonging to others.

CR’s Exit Interview

Before discussing the exit interview, it should be noted that CR was unable to read his story to others. During the exit interview, CR reported that he “loved” creating the story and that it assisted him in dealing with his anger and expressing his feelings (see Table 7). He indicated that he had difficulty in identifying his favorite part of the story but initially indicated that he liked the part in which his main character ran away. His least favorite part was the killing of an individual. This acknowledgement may be an unconscious unintentional expression of CR’s own thoughts and feelings as suggested by (Brandell 2000), who reported that children identify their thoughts and feelings through their drawings. CR’s thoughts may have been of regret or remorse for physically harming others.

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Table 8

CJ’s Responses to Storytelling Experience Questions

Questions CJ Response

Did you like or dislike creating a story I liked it; I loved creating it. It helped me that included your visible difference? cope with my anger and express my feelings.

What was your favorite part of the story? Where she ran away to the desert . . . well mostly all of it.

What was your least favorite part of the The first part because she killed a man. story?

Would you tell your story to those who Yes, because they might think it is are not visibly different? funny.

Who was your favorite character, and Jan, because she is the Hulk . . . the, she why is it your favorite character? Hulk actually.

Who was your least favorite character, Bruce and the police . . . because they are and why is it your least favorite? not like her. . . . I don’t know; . . . they are not monstrous like her

How did you feel after telling your story? CR was unable to read his story. He discharged from the hospital.

Would you read your story to your Yes . . . and no because I really don’t classmates in school? want to because, I’m scared. . . . I have stage fright. . . . I don’t know. . . . I just hate being in . . . talking in front of crowds.

Would you like anybody else to hear your story?

Is there any thing missing from your story?

Is there anything you want to tell me or say about your story?

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Summary of CR Work

CR was identified as engaged in the story creation process. He was identified as cooperative, showing anxiety and frustration at times. On day nine, CR’s computer day, he exhibited a range of emotions (anxiety, frustration and focus) indicating that the task of placing information in the computer may have been challenging but a desirable one. His art work was identified as violent and aggressive and many of his images covered the page. Although his images were violent and aggressive, it did appear that he tried to avoid violence. He used a positive coping skill when talking to a peer about his visible difference. And He often said that others identified the researcher as his therapist and he eventually agreed by stating that the research was helping him cope. CR’s behavior logs indicated that he continued to have verbal and physical outbursts and he acknowledged that he had been verbally and physically aggressive with others. Upon exiting, CR acknowledged that he enjoyed creating a story book and the he would with hesitancy read or tell his story to others.

What was Learned from the Two Case Studies

Both ZJ and CR were engaged in the story creation process and they liked creating a story. They acknowledged that the story either helped them or that it might benefit another. Each child would tell their story to another, although CR was somewhat hesitant to do so. Common behaviors noted in the behavior logs and through therapist notes were rushing, frustration, impulsivity or anxiousness, and appearing engaged. Also each participant appeared to have difficulty typing his stories into the computer causing ZJ to appear less focused and CR to be frustrated. ZJ was identified as appearing involved in the computer process by the observers and

CR as focused, indicating that although the task of typing their stories into computer may have

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been a challenging one, it was also a positive experience. Seeing their own story come to life in the computer was important for each child.

Behavior logs of both participants indicated that each child was compliant and cooperative while an inpatient, but that they also provoked others while creating their stories. ZJ was observed as provoking others and feeding into negative behavior and CR was observed being verbally and physically aggressive. Although verbal or physical aggression continued through the story creation process, each child acknowledged verbally or even attempted to change how they approached others. ZJ reported that he wanted to help people understand others with visible differences and the researcher observed CR attempting to tell another about his visible difference in a nonaggressive manner. Although behaviors of the participants did not appear to change overall, the story-creation process appeared to encourage the participants to help others understand individuals with visible differences. The story-creation also promoted the use of positive coping skills even though the participants were slow to use them at times. Both participants continued to provoke peers throughout the story-creation process. Behavior logs of both participants indicated that although the participants liked creating their own story books, behavior change as a result of creating the book may not have occurred. Each participant continued to have behavior problems throughout the story creation process.

There are many distinct differences in the drawings and stories of ZJ and CR. ZJ story attempted to identify how a friendship is developed, while CR’s story is graphically and editorially sad. In ZJ’s story there was no negative interaction or confrontation between the characters in the story. The characters in his story got along and they longed for understanding.

For example, ZJ writes “Tye want to be friends with Max because he is lonely but shy too. Max

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wants to make friends with Tye because he thinks that if someone is like him they’ll understand each other more. (Max thinks that communicating with people like him helps)”.

Although there appears to be no conflict, ZJ does indicate that his characters have some concerns: loneliness and finding a friend who is willing to listen. ZJ’s story illustrates how therapists and scholars suggest children might discuss their visible differences with others: helping parents understand what happened and explain it to the child, and not to ignore the issue

(Changing Faces, 2003). Through forthright discussions, the children in ZJ story were able to interact and learn more about each other. It also promoted interaction at school in the classroom and on the playground.

CR’s story is very confrontational. His main character kills another, a person is ran over, and his main character changes her physical make up when others make her mad or angry. CR’s main character ended up alone in the desert with no resolution on how to interact appropriately with others. Even though CR’s main character ended up alone, the character, She-Hulk, did resolve, in some form, to be okay with her visible difference.

CR unlike ZJ was very aggressively verbal when it came to speaking and writing about his visible difference. His discussions on about his visible difference almost seemed as aggressive as the images he created. When discussing his visible difference CR spoke defensively desiring respect and acknowledging several times that he did not like people talking about him and when they did he became aggressive either physically or verbally in return. CR’s aggressive tone on paper and during sessions may be a learned defense mechanism which is sparked by discussions or comments made about his visible difference.

Another difference that can be noted in the stories of ZJ and CR is that ZJ did not place his visible difference in his story. He talked about it in his video recordings but did not actually

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draw a picture making a distinct difference within his characters. CR made a distinct difference, making his character transform from a person with the “good stuff” to a “monster.” Each participant, through their drawings, captured how society might view them. For example, unless

ZJ speaks, one cannot really tell that he has a cleft lip due to his reconstruction. CR on the other hand has a noticeable malformation that covers half of his face. There is no pretending that it does not exist. CR has to deal with questions and stares on a daily basis while ZJ may be able to get away with people missing his visible difference.

There were also differences in drawing style. CR most often filled the page with color, while ZJ most often outlined his figures. The characters in ZJ story are not very distinguishable from the main character except for the outlined color. CJ’s main character changes into a different color, green with purple hair. It is evident who she is and when she is angry.

The images drawn by both participants may be compared to the severity of their visible differences. ZJ images are nonthreatening and simply drawn and his visible difference is small, light and barely noticeable. CR’s images are disturbing and intense and his visible difference may be identified as the same. CR’s visible difference, like many of his images, covered the majority of his face, was pronounced, and was easily visible by others. Scaring or wounds on

CR’s face are evident like in his pictures and individuals who came across CR would automatically see his malformation whether they tried to or not, just as the oversized She-Hulk in his drawings.

Videotaping the participants had its advantages and disadvantages. Videotaping each participant allow for reviewing of what took place in the sessions. It allowed each observer an independent opportunity to identify behaviors they saw and allowed for conversation with observers. The disadvantage of videotaping was that both individuals focused on the camera at

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times and appeared distracted by it. Also, although the sessions were recorded it was difficult to understand the participants at times. Reviewing the videotapes was also tedious and time consuming for the observers and the researcher. It also made it difficult to compare and contrast participants behavior, as the videos could not be view simultaneously.

It is difficult to determine whether or not the researcher’s visible difference played a role in how much the participants divulged about their own visible difference. However, each participant discussed their visible difference with the researcher and each participant inquired about the researcher’s visible difference at some point in the story creation process. ZJ even attempted to place the researcher’s visible difference in his story at the start of story creation.

Summary

In the chapter to proceed there is a discussion of the research results and how it may relate to the literature reviewed in this paper. There is also a discussion on the story-creation process and how each participant responded. The chapter discusses how each participant compares himself to the story he created and identifies how the participants related the stores created to themselves. Another topic of discussion is the psychological impact that creating a story had on the participants. Further discussion is on the response to developing a story and the development of theory. Finally, the limitations of the study are identified and suggestions for future research are stated.

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CHAPTER FIVE

DISCUSSION

Both of the participants of this study were male. Each was asked to create a story book using his visible difference for one of the characters in the story. They each participated in an entrance and exit interview. Six questions comprised the initial interview, with eight in the exit interview. During the six-week process, each participant’s behavior was monitored and recorded daily by staff members. Three days of their observations were identified and coded. Every story- creation session was videotaped. I reviewed and wrote observations from the tapes and also wrote a memo after each session. Each session was observed by mental health professionals who recorded the behavior of each participant over the six-week period. The observers were then grouped to further identify behavior. At the end of the six weeks, participants were asked to read their stories aloud.

Overview of the Results

The purpose of this research study was to develop a beginning theory of how children with visual disfigurements respond to developing a story about their visual difference and to understand how writing and illustrating a story would help a child with a visible difference deal with a disability. In this study, two children with visible differences and low self-concept illustrated and wrote a story about their visible differences.

The overarching research question was how will visibly different children with a low self-concept respond when asked to create, illustrate, and tell a story with a focus on their visible difference within the story context? Results indicated that when individuals include their visible difference as a part of story-creation, they reveal parts of their lived experiences through the story or through verbal communication. Results also indicated that children find story-creation

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enjoyable and are willing to work through challenges that creating a story book for themselves may entail. Findings also suggested children with visible differences may possess a desire to tell their stories to others, although some hesitancy may exist. Finally, the task of creating a book is therapeutic. Participants of this study reported that story-creation aloud them to cope with their visible differences in some manner and the researcher was identified “like” a therapist, helping him cope with anger.

Although participants were asked to use their visible difference for a character in the story created, they were not asked to discuss their visible differences until after the story-creation process began. Yet each participant brought up the topic on his own. ZJ began discussing his cleft palate from the very beginning of story-creation, while CR took a gradual approach. Each child also seemed to place some characteristic of himself in his story. CR, for example, drew images that were very aggressive and violent: a truck running over one of his characters, the She-

Hulk; the She-Hulk killed someone by running over him or her. CR also appeared to mimic the lived experience of wanting to be left alone, as he had stated in his exit interview, when he wrote, “Jan ran into the dessert because she didn’t want anybody to see her.” ZJ placed his mother into the story almost immediately, possibly indicating that, when a child is asked to place some aspect of himself or herself in a story, lived experiences are prompted or brought to the child’s mind. For ZJ, his mother was an important figure in his life whom he thought needed to be included in his story

Story-creation, although therapeutic, does not have a direct effect on behavior. However, through the story-creation process, each participant discussed his visible differences, identified how it affected him, and how he responded to teasing and questions about his visible differences.

Each participant also, without prompting, identified how and when he acted-out and identified

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appropriate ways he should have responded to the provoking of others. Both participants reported that they attempted to walk away from those who teased them and that they also tried to tell others what happened to them. They also acknowledged that they did respond with physical aggression at times.

At the end of the story-creation process, each participant reported that they “liked” creating a story with their visible difference placed in it. Both participants recognized that, as they were creating their stories, they were helping themselves or helping someone else. CR said that the researcher was helping him cope and that she was somewhat like a therapist to him. ZJ stated that he wanted others to “read his story and tell others about it.”

Story-creation processes allowed the participants to express themselves verbally as they communicated with the researcher and artistically through drawing, writing, and book construction. Through verbal expression, each participant was allowed the opportunity to talk about his visible difference, if he desired, and any other topics that came to mind. Each participant freely discussed his visible differences even after he was questioned about it in the initial interview. CR verbalized his thoughts and feelings about himself several times. He identified himself as monstrous and ugly, saying that he had “the bad stuff” and that he wanted surgeons to change his appearance for the better. He also described how his body reacted as a result of having a malformation. ZJ, in turn, verbalized thoughts about his relationship with his mother and often discussed the importance of making friends. He was even able to acknowledge that there are other types of visible differences that people struggle with.

Each participant, eventually, asked the researcher about her visible difference. CR even found that he had something in common with the researcher when he inquired about her visible difference. Commonalities with the researcher allowed the participants to feel more at ease with

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inserting their visible differences in the stories and provided reassurance in verbalizing thoughts about their own visible differences. Although the researcher did not have the same visible difference as the participants, seeing and knowing that a difference was present may have provided the participants with some sense of relief. Therapeutically, having a researcher with a visible difference may have made the participants feel safe and less anxious about revealing information about their visible difference and relaying that information on paper. This commonality may be seen as a springboard which provides an impetus for the participants to begin discussion of their visible difference.

Artistically, each participant created a story in the style he wanted. Although they had guidance in increasing story-line details and making their narrative make sense, their tales were their own. When drawing and not writing, CR was able to carry on a conversation, but when he was writing, the conversation was kept to a minimum. As he drew, CR described many of his pictures, but when he wrote, he hardly said a word. ZJ often drew and wrote without saying very much until he was finished with a task.

It is important to make note that the participants of this study were male and that the responses and actions of female participants may have been quite different. Females may have responded more emotionally to the story-creation process. They may have avoided using or discussing their visible differences and they may not have been as willing to share their stories with others, as their perceptions of self may be more guided or geared toward the societal norm.

While behavior change was not immediately observed as occurring with the participants of this research, the participants did acknowledge that their stories helped them in some way.

CR, in particular, reported that creating the story helped him to cope with his emotions.

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The Participants

Both ZJ and CR had lived with an identified problem all of their lives. Each dealt with the problem by attempting to talk about his disfigurement to others. Perhaps the success they had in creating, illustrating, and telling their stories without becoming angry assisted them in deconstructing their experiences and aided in the process of reducing their dominant stories of teasing. Creating stories may have assisted them in separating themselves from the visible difference that had been highlighted by society as suggested by White and Epston (1990). The separation may have offered the participants the emotional distance to face their own visible difference.

CR’s story reflected his life experiences, as discussed by Hynes and Hynes-Berry (1986).

The main character had a disfiguring condition and, when angered, destroyed things or harmed others. Like the characters he created, CR reported having difficulty controlling his anger and verbalized several times that he had hit other children. He also wrote in his personal narrative that he and his main character, She-Hulk, looked alike and that both of them were “mean.” In addition, CR indicated that the process of creating his book helped him with his anger. CR’s process, as discussed by Hynes and Hynes-Berry (1986), assisted CR to discover prosocial ways to cope with his or her issues. Furthermore, CR used appropriate coping skills when confronted by a peer regarding his visible difference. In the researcher memo, it was noted that CR, although appearing somewhat hesitant to respond to a peer, used what Hynes and Hynes-Berry

(1986) called “self-application” when he told his peer that he had surgery and walked away. He could have become verbally or physically aggressive as he made this disclosure, but, according to staff, he did not. His reflective comments afterward revealed feelings of both nervousness and

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success. Yet he stated,” but I did it.” Finally, CR identified the researcher as his “book therapist,” identifying her as an individual who helped through the use of stories.

The Story-Creation Experience

When discussing their storytelling experiences, both participants indicated that they liked the experience. ZJ used the terms “we” and “us” when talking about his experience. He reported,

“I liked it because we got to tell about us and what we are like.” CR indicated how the book helped him cope with his emotions. He reported, “I liked it. I loved creating it. It helped me cope with my anger and express my feelings.” When ZJ and CR identified their favorite parts of their stories, both picked passages in which their characters had a choice to make. In ZJ’s story, his main character Max chose to make a friend; the main character, She-Hulk, in CR’s story chose to run away.

When identifying the least favorite parts of their stories, ZJ chose a difficult moment that many individuals with visible differences experience: wanting to get to know an individual or be involved in a social interaction but yet feel unsure that it will work (Rumsey & Harcourt, 2007).

CR’s least favorite moment was an aggressive action, killing a person, which might indicate the remorse or regret he felt when he was aggressive with other individuals. According to McNamee and DeChiares (1996), through picture books, children explore life and react at a safe distance.

Each participant reported that he would tell his story to others who were not visibly different.

However, when asked whether he would read his story to others, CR replied, “Yes” with enthusiasm but then stated “No” because of feelings of “stage fright.”

When asked to identify their favorite characters in their stories, both participants reported that their main character (Max for ZJ or She-Hulk for CR) was their favorite. Each also indicated that his main character represented himself. ZJ did not choose a least favorite character while CR

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identified two least favorite characters: Bruce and the police. Bruce was the main character’s father. At the time of this study, CR had no contact with his biological father but wanted some interaction with him. CR also struggled with authority figures while in in-patient treatment. The behavior logs indicated that staff at the facility often had to redirect CR for inappropriate behavior. He was identified as provoking his peers, and CR himself acknowledged in the storytelling sessions that he became aggressive with peers.

Reading the Story to Others

Participants were asked to read his story to peers or family members. CR was unable to participate in this part of the study because of being discharged from the hospital before the study was completed. However, he did report mixed feelings concerning whether he would read his story to others because of feelings of stage fright. ZJ, who was able to read his story to family members, reported feeling “happy” after reading his story. His siblings appeared intrigued by the story and the creation of the book itself. Both siblings asked many questions about the book and, after the reading, went to view the book with ZJ. As indicated earlier, CR was indecisive about whether he would read his book in front of others because of feelings of stage fright. ZJ, however, reported that he would read his story to others because he wanted others to hear about it.

Both participants had previously attempted to tell others about how they acquired their visible differences but continued to be teased about their visible differences. ZJ reported that people made fun of him because of the way he spoke and CR reported being teased because of his abnormal face. Both also reported feelings of anger and frustration when attempting to tell their stories

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Comparison of Story Characters to Self

Both participants were born with a congenital malformation. ZJ’s visible difference was difficult to identify while CR’s visible difference was very evident. In addition, ZJ reported that people asked him about his speech rather than his cleft palate, and he would then offer information about his cleft palate. CR reported being asked about his visible difference. These differences may offer some explanation as to why CR was somewhat hesitant to state that he would read his book in front of others. The differences might also explain why the images in

CR’s book were much more graphic, aggressive, and detailed than those in ZJ’s book. CR’s images filled the page while ZJ’s images were small, less detailed, and less threatening. The pictorial differences in ZJ and CR’s images, might also allude to the intensity to which each was teased by others or by how aggressive he was or desired to be when others were making fun. The differences in story intensity and graphics might also explain the reasons for each person’s admission to the hospital. Although both participants were physically aggressive toward others,

ZJ entered the hospital for wanting to harm himself and CR for harming another.

In comparing the participants’ main characters (for participant, the main character as a representation of himself), CR chose to have his character transform from an ordinary person into a monster while ZJ’s main character did not physically change. Although ZJ indicated in the beginning of the study that he was going to give his character a cleft palate, as he participated in story-creation, he never modified his character’s physical features. It is interesting to note that

CR, who had a pronounced visible difference, identified himself as “monstrous” and “ugly” and then created a story with a character which became a monster. His She-Hulk character and self- description are typical of how individuals with visible differences and fairy tale characters who were identified as evil were once defined or may still be defined.

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The findings indicated that CR had issues with his body image. As Cash and Fleming

(2002) suggested, CR evaluated himself by his physical appearance. He often covered his face with his hand and called himself negative names such as ugly and monstrous; he also had difficulty talking with others about what happened to him. He identified himself to the researcher as having the “bad stuff” while she had the “good stuff.” This statement also might suggest that CR felt there were varying degrees of disfigurement and he identified his facial problems as extremely severe or even monstrous. CR’s self-description, his attitude about his visible difference, and his desire to cover his face may indicate that he (and others) identified his visible difference as his most significant characteristic, as suggested by Bradbury (1996).

It was difficult to determine whether ZJ had difficulty with his body image. Although he did acknowledge his visible difference, it was not as pronounced as CR’s. However, when ZJ spoke, it was evident that he had difficulty with his speech, and he stated that he was teased because of his communication problems. These speech impediments may not have led to a poor body image but may have caused issues with ZJ’s self-concept.

According to Graydon (2004), from an early age, the term beautiful has a specific meaning. Most people come to understand its meaning by what people say and how society describes it to them. CR’s perception of himself may have stemmed from these views unconsciously. What he had come to know as “beautiful” might be a well-sculpted face like that of the beautiful Belle from the fairy tale Beauty and the Beast and his definition of ugly might stem from that of the Beast from the same story. In the same context, CR’s aggressiveness could be typical of how a beast might behave. In the story of Beauty and the Beast, the beast is a prince who has been transformed into an unattractive being because of a curse placed on him. As a result, the prince becomes angry and spiteful, taking his anger and aggression out on all who

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encounter him. To break the curse, he must find a woman who sees his inner beauty. To do so, he must change internally, eliminating the anger and spite and accepting himself as a beast

(Graydon, 2004).

Psychological Implications of the Art

It is difficult to determine whether the participants highlighted their visible differences as suggested by Machover (1949), Koppitz (1968), and Lowenfeld and Brittain (1987) because the participants were asked to do so as a part of the story-creation process. However, CR’s character’s body changed completely, not just in the face. His character’s body color changed, her height changed, and her behavior changed. ZJ’s character did not have an identifiable difference, although he acknowledged a difference in his story.

The art work of ZJ and CR may be an expression of their thoughts and feelings as suggested by Riley (1997). During his initial interview, ZJ reported that he liked to be alone. His drawings and the story he created were about making a friend. Although the participant did not verbalize difficulty in making friends, behavior logs and the participant himself indicated difficulty with peer interaction. He reported that he became angry and “explodes.” In the behavior logs, staff indicated he provoked others. He even reported that he had thoughts about hurting others. CR’s images were aggressive and violent and his images alluded to personality.

He, like ZJ, reported feelings of anger. CR acknowledged that he had been getting into trouble for being physically aggressive with his peers. His images indicated a desire to harm another.

Responses to Developing a Story

Both participants experienced frustrations with the task of writing and illustrating a story; it was a challenge. Seeing their images on the computer screen helped both become more engaged in the story-creation process, even when each appeared to have difficulty with entering

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information into the computer. The thought of quitting was even verbalized by one participant, but he continued and worked through his challenges. Eventually he realized it was rewarding and beneficial. Increased involvement in story-creation also appeared to occur when the participants began to bind their books. Seeing the final product was satisfying and rewarding for each participant.

Overall, it appeared that story-creation, with the inclusion of one’s visible difference, was a positive experience for the participants. However, behavior change was not occur as a result of story-creation. Although the participants were able to identify ways in which they should respond to peers when they were teased, each reported that getting angry and, at times, physical aggression was still an issue. Both participants had incidents of aggressive behavior throughout the weeks when they were creating the story, provoking other with both words and physical force. One change occurred with story-creation…talking about their visible differences and its effect. As the participants wrote, drew, created, and placed their visible difference into the story, insight into their lived experiences was evident. Discussing their visible differences, identifying their wants and needs, and allowing another to see how they responded to others were important outcomes of the story creation process.

Development of a Theory

Allowing children with visible differences to create a story, which included their visible differences as a main theme, aids in understanding of these differences, and promotes dialogue on how a child might respond to those in society. Story-creation also provides an outlet for examining issues that the child might be having regarding himself or herself, society, or even what he or she may desire to occur in life. Each participant of this study told the researcher what he wanted from society in relation to his visible difference. ZJ, who identified that he often

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played alone, created a story that allowed him, as Max, to make a friend. CR reported that he got angry with people when they talked about him and that he wanted people to leave him alone. He also talked about his anger and his destructive nature and through the story-creation process, CR acknowledged his own physical aggression. He told the researcher that he got into trouble on his unit for fighting, that he dropped a level (children were given additional privileges when they moved up a level in this behaviorally-based program) due to his aggression, and that in the past he punched a peer for making fun of him. In CR’s story, a person is killed, ran over, and his main character, the She-Hulk, runs away in the desert to be alone. He also clearly let the researcher know that he does not like it when people look at him, and, when he created his story, he clearly stated this same message by writing in his book in bubble captions “Don’t look at me.”

Combining both drawing and writing in the story-creation process allows professionals who work with children who have visible differences, an opportunity to hear what a child has to say about what is happening in his or her life. To hear children is not only listening to what they have to say about their story, it is important to read, question, and to examine them. By asking questions about what is occurring in the drawings and writings of a child, the professional enters the child’s world. In addition, combining the two elements (drawing and writing) also promotes deeper understanding. I found myself asking questions about the images and writings of the participants as they were creating. By asking questions, I was able to get more detail about the story the participant was creating and, in turn, they often revealed something about themselves.

For example, in a conversation with CR, I asked how the She-Hulk was like him, and he reported that she was ugly like him.

Children with visible differences want to tell their stories and placing their visible differences in the story promotes debate of one’s own visible difference. If the participants of

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this study were not asked to place their visible differences in their stories, the amount of information they revealed about their visible difference may not have been realized. Both ZJ and

CR brought up the topic of their visible differences several times in the research without researcher prompts. Although it may take some time for the child to talk aloud about their visible difference to another when creating a story, the inclusion of the visible difference allows them the opportunity to say something in written and pictorial form. This allows them to have an outlet to discuss their visible differences without saying a word, and it provides an opportunity for them to acknowledge their own feelings. Moreover, it gives the professional the opportunity to inquire about the children’s story rather than directly discussing the child’s visible difference.

In essence, the child’s book is used as a surrogate, offering a safe place for the child to hide or escape from the outside world. Although these are assumptions, they may provide those who care for and work with visibly different children a new and fresh opportunity to get to know and understand the child who may find it difficulty to be different.

While story-creation may not be the primary solution in getting or seeing behavior change in children with visible differences, it may assist in improving self-concept and offer them the opportunity to let go of the hurts and to explore ways in which to practice positive decision making. It may also assist the visibly different children in figuring out a way to interact with others and allows for parents, therapists, and others the opportunity to glimpse into the their world.

In formulating a theory based on the research herein, the following perspectives have been developed: (1) story-telling is an important vehicle in helping disfigured children to make meaning of their disability; (2) story development, which includes both writing and drawing the characters, helps children to identify and discuss their lived experiences and the challenges they

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face; and (3) the story creation process reaches beyond the child, him or herself, and helps the child convey their lived experiences to others including family, friends, and helping professionals.

Limitations

Although the research results support that the participants of this study benefited from story-creation, there were some limitations to this study. First, finding participants for this study and finding individuals who could participate at the same time in order to have a small group was challenging. The study was to take place in an outpatient setting; however, it was difficult to find an agency that had patients who met the criteria. Some of the agencies that were interested in the research topic had children whose developmental levels were too low for participation in the study and others had no children who specifically had issues related to their visible difference. Once a participant was found, it was difficult to find a day and time for working with a group. Therefore, the two participants did not benefit from discussing their visible differences with another child who also had a visible disfigurement. A small group of three children was the aim of the study, yet only two participants were found and had to be seen individually.

Absences were another limitation to the study. Each participant missed several sessions due to illness or family visitations and medical problems. Missing some of the sessions decreased the amount of time participants had to complete their stories and may have decreased morale. The researcher also was absent. After some absences, the researcher had to convince one of the participants to continue work on the story.

The computer was a concern. Although participants appeared to adjust to the computer process, each had to become familiar with how to use the computer and get use to the typing process.

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Limitations also came with the description of the behaviors of the participants. Mental health professionals were not given specific guidelines on how to describe participants when viewing videos; therefore, comparisons could only be made on behavior if there were similar discussions of behavior and art work. School observations had to be limited to reviewing behavior logs. This made it difficult to get an in-depth descriptive view of the participants’ behavior in school and with their peers.

A final limitation was the participant pool. Although the study was not gender specific and getting participants for the study time challenging, males were the only participants. This limited the study because a female view point was not provided and no comparison could be made regarding gender.

Suggestions for Further Research

In this section, ideas for future research will be discussed. The participants of this research were pleased with the outcome of their stories and each indicated that he enjoyed creating his story even though he was asked to use a visible difference within the story context.

Giving the participants a variety of drawing utensils to choose from for the stories creation allowed for freedom of choice and independence. Each participant used a variety of art media and, at times, commented on having a particular type of material available. For example one participant like using the thin markers while the other used the thick markers more often.

Videotaping and recording allowed for confirming what was said by the participants and researcher. Observations and memo writing allowed for various descriptions of the participants’ behavior and provided confirmation of behavior exhibited by each participant over the course of the research. The initial interviews provided the researcher and participants the opportunity to get to know one another and identified the experiences of the participants prior to beginning the

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story creation process. Finally, having the participants monitored by a mental health professional throughout the research process helped to maintain the safety of the participants.

If conducting this study again, it might be beneficial to use a pre- and post-evaluation on self-concept to measure changes in self-concept. Although it is apparent that the participants liked creating a story and each boasted about what he was creating, it was difficult to determine if a sense of self increased . A stronger study might include a pre and post self-assessment.

Although no significant behavioral changes were note, a self-assessment could uncover meaningful data about how participants viewed themselves.

More specific guidelines for observing the participants and assessing the videotapes would assist in making comparisons of participants’ art work and behavior. Separating the researcher from the story-creation would allow for better objectivity in the study. Also, having two groups to study would be ideal. One group could be led by someone with a visible difference and the other without. This would help to identify if participants provided more or less information about their visible difference to a particular researcher. By having only one researcher with a visible difference, it is unclear if the researcher’s visible difference affected the amount of information the participants provided. Finally, with the introduction of avatars to the world through online gaming and the internet, taking a look at the effects of forming and avatar and how it effect the individual’s perception of himself or herself, may assist in understanding if transforming one’s self into and entity or figure helps in retrieving information about an individual and how he or she might respond to others in society.

From conducting this research, it was evident that more research needs to be conducted on helping children with disfigurements. More data on the reasons family members do not seek therapeutic services for children who are having difficulty dealing with their visible differences

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is needed. It was very difficult to find research participants with visible differences to study. Due to the difficulty in locating children with disfigurements to study, some questions to consider are:

(1) are parents and guardians attempting to assist these children without professional help because they are unaware that they can receive services for their children, (2) is there enough information to help parents become aware of the unspoken challenges many of these children face, and (3) are we still in an era when children who look different are hidden from society.

When children with visible disfigurements are assessed for counseling services, specific questions need to be asked about how they respond to others and how others respond to them regarding their visible difference. This knowledge may lead to understanding how the children feel about themselves, others, and their visible difference. It may also increase the likelihood of finding a child in need of help. Education and understanding are key components in changing perspectives and increasing the chance that a child with a visible differences, who needs assistance with coping with the challenges of being different, receives the help he or she needs.

Most importantly, more research needs to be conducted on how stories, pictures, and writing affect children with visible differences. More research needs to be conducted on how children can benefit from telling their stories in the classroom. With the current bullying epidemic, parents and teachers need the means to help children accept and understand differences so they do not resort to extreme measures of coping.

Story-creation provides children with visible differences another voice. This voice speaks for them when they are not able or are unwilling to speak for themselves. The information they may provide gives the reader or listener an opportunity to get to know the children in a new and different way. Separately, words provide a written account of an event. Words describe a phenomenon and the reader must imagine or determine in his or her own mind what is taking

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place. Pictures are visual representations. Although not tangible the viewer is able to get a visual glimpse of what a storyteller would like the viewer to see or imagine. Images or drawings illustrate how things appear, their color, size, and shape. In combination, words and drawings provide a more accurate account of a story. Although the reader/viewer may add or imagine portions of the story because of his or her own thoughts and ideas, the storyteller’s words and pictures provide particulars such as time and place, dress, color and setting. Understanding that children with visible differences may need an alternative outlet for speaking is important.

As a researcher who takes a personal interest in the this topic, there were numerous research questions raised by the study reported here: (1) how does story-telling and other reconstructions play in assisting in improving one’s self- esteem, (2) how do counselors, educators, family, and friends help children who are dissatisfied with their looks or who cannot have reconstructive surgery, (3) how early should children be told about their visible anomalies,

(4) how can society improve its responses to those who are visible different, (5) what responsibility, if any, do schools have in assisting children being bullied because of their visible differences, (6) what tools do caregivers equip children with visible differences with to help them cope if a child is unwilling to talk about what to them, and (7) how do females children with visible differences respond to story-creation?

Conclusion

Overall, the research reported herein indicated that children with visible differences benefited from creating a story about their visible differences. The benefit was not in decreasing negative behavior but rather in learning that story-creation is a meaningful experience. One participant was so confident about his story that he wanted to publish it.

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Each participant read his story to another, even if they were hesitant to do so. This indicates that story-creation and reading one’s own story is beneficial to those having issues with their visible disfigurements. Even though the purpose of this research was not to conduct therapy, it appears that story-creation was viewed as therapeutic by staff members, observers, and participants.

Story-creation with visibly different children who include their disfigurement in the story provided a positive outlet to express anger and desires. It offered the children the opportunity to express themselves in words and pictorial form. If words did not convey what a child was trying to say, the drawings expressed it for him. Finally, seeing one’s book come to life appeared to keep the participants engaged in the process. After the participants completed the writing and drawing, placing the information in the computer appeared to keep the participant engaged in the story-creation process. Constructing and producing the book was exciting for each participant and increased their ability to remain engaged with the process.

The qualitative research conducted herein was demanding. The large amount of data was a challenge to analyze and assess. Having such a large amount of data made it difficult to identify what information to include in the research findings and what to eliminate. More specific guidelines should have been given to the observers who helped with the data gathering process.

Videotaping was helpful to an extent. It allowed the observer to review behaviors and information. It also provided the researcher an opportunity to take an outside look at the participants after participation in the study was complete. Also, having a mental health professional on hand to help keep participants safe and to allow the researcher to report concerns would have been beneficial. Not being able to observer the participants in school or to monitor

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behavior may have hindered the research; behavior logs only provided brief glimpses into the participants’ behavior throughout a day.

Finally, story-creation with the inclusion of one’s visible differences engaged the children. It allowed for self-expression and a release of emotions. By including visible differences, the children who participated in this study were able to discuss the problems associated with their differences. As they drew and wrote, much information was revealed about each boy. Although the writing a story and constructing a book was seen as a challenge, each participant completed the process and garnered meaning from creating their own books.

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APPENDIX A

PARENT CONSENT FORM

I, DeAndria Frazier, am a doctoral candidate in the Art Education Program at Florida State University. The purpose of my research is to identify how children will respond when asked to create, illustrate, and tell a story about themselves, using their visible difference with one of the characters, in some manner, in the story content.

The research proposed requires that each participant create a fictional character based on the participant’s visible difference as well as create a fable about the fictional character. The researcher will assist participants in this task.

Throughout the study, the researcher will use a video camera to record each session and tape recorder to record interviews. These recordings will be used to help review and analyze data within the research. The research will also photograph the art work of the participant so that it might be present along with the research findings and discussed during the researcher’s dissertation defense at Florida State University.

Participants in this research will complete various sketches and drafts before completing a story. These images, along with the final storybook, will be returned to the participant after completion of the research.

There are several benefits to participating in this study. The first involves the participants becoming aware of who they are and how others view their visible differences. Second is the ability to help others understand their visible differences.

A minimal level of risk is also involved in participating in this study. Participants may experience feelings of anxiety related to discussion of their visible differences. The group sessions will provide the opportunity to discuss any emotional discomfort experienced while participating.

Participation is completely voluntary and participants may stop participation at any time. Participants have the right to keep their work confidential or place their names on the project created, to the extent allowed by law. The use of the art work may be published and used for educational purposes with the consent of the participants, using names or pseudonyms, whichever the participant or guardian prefers.

This consent may be withdrawn at any time without prejudice, penalty, or loss of benefits to which you are otherwise entitled.

You may contact me, De Andria Frazier at ******* my faculty chair, Dr. Marcia Rosal, at Florida State University, Art Education department at ******* or the Florida State University Institutional Review Board at *******for more answers to questions about this study or your rights.

I, ______, have been given the opportunity to ask and have answered any questions I have concerning the study. Any questions have been answered to my satisfaction. I have read and understand this consent form, and I freely and voluntarily consent to be a participant in the study.

I have read and understand this consent form and give consent for my child ______to participate in this research study.

______Participant/Guardian (print) Date

______Participant/Guardian (Signature) Date

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APPENDIX B

CHILD ASSENT FORM

Hello, my name is De Andria Frazier. I have been told that you are aware that a part of your body looks different than most children. I am trying to learn about how children who look different, respond when they are asked to create a story about themselves using pictures and words. If you would like, you can be in my study.

If you decided to be in my study, I will talk to you about your special difference. Then you will be asked to write and draw a story, using your special difference in part of the story. I will meet with you 2 times a week for 6 weeks. On the last day I will ask you to tell your story to your parents and peers. Then you and I will talk about you experience.

The benefits to participating in this study include: learning more about yourself and your special difference, helping others understand what happened to you and creating a story that will help you talk with others about your special difference.

Other people will not know if you are in my study. Things I learn about you will be combined with things I learn about other children, so no one will know what things came form you. When I tell others about my research I will not use your name.

I have to get permission from you parents or guardian to let you be in the study. After they decide, you also get to tell me if you want to do it too. You do not have to bee in the study if you don not want too. I will not be mad and if you decide that you want to be in the study and change your mind, that’s okay to. You can stop at any time.

My phone number is ******* You can call me if you have any questions about the study or if you do not want to be in the study any more.

I will copy this form so that you can contact me if you have any questions and to remind you of what the study is about.

Agreement

I,______, have decided to be apart of the study. DeAndria Frazier has answered all of my questions and I know that I do not have to do the study if I don not want to do it.

Signature of Study Participant/Date

Signature of Researcher/Date

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APPENDIX C

PARENT QUESTIONNAIRE

Child’s age (circle one) 8 9 10 11 12

Gender (circle one) Female Male

Ethnicity White African America Native American Asian Other (please specify) ______

Please identify the location of your child’s disfigurement. (Circle all that apply) Face Hand/s Arm/s Leg/s Back Stomach

Please identify how your child became disfigured. ______

Please identify whether your child’s disfigurement can be seen when wearing the following: (circle all that apply) Short-sleeved shirt Long-sleeved shirt Shorts Pants

How does your child respond when others stare at him or her?

How does your child interact with peers?

What activities is your child involved in at school?

How often does your child talk about his or her visible difference?

Does your child attempt to cover his or her visible difference in the presence of strangers?

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APPENDIX D

INITIAL INTERVIEW QUESTIONNAIRE

How do your peers respond to your visible difference?

What do you say when others ask about what happened to you?

What do you do for fun?

If there was one thing you could change about yourself, what would it be?

What do you do when others talk about the way you look?

How do you feel when others talk about the way you look?

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APPENDIX E

STORYTELLING EXPERIENCE

Did you like or dislike creating a story that included your visible difference?

What was your favorite part of the story?

What was your least favorite part of the story?

Would you tell your story to those who are not visibly different?

Who was your favorite character, and why is it your favorite?

Who was your least favorite character, and why is it your least favorite?

How did you feel after telling your story?

Would you read your story to your classmates in school?

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APPENDIX F

BEHAVIOR LOGS

B = Behavior

I = Intervention

R = Response

P = Plan

Time Narrative

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APPENDIX G

STORY-CREATION OF ZJ

Figure 1 Figure 2

Figure 3

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Figure 4 Figure 5

Figure 6 Figure 7

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APPENDIX H

STORY-CREATION OF CR

Figure 8 Figure 9

Figure 10 Figure 11

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Figure 12 Figure 13

Figure 14 Figure 15

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Figure 16 Figure 17

Figure 18 Figure 19

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Figure 20 Figure 21

Figure 22

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APPENDIX I

IRB APPROVAL FORMS

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Melto, my 031MO: i3 ｾ＠ AC'.dtia.l·'razlet. J haYC ｢ｾ＠ told thtlt YQU are awa.Te that a part or )'OW' body looks d i1Tc::r1:nt thBJ\ mosc chUd.rc.n. I Ｚｾｭ＠ tr}i.ng to lc:IUTI about bow ｣ｨｩｬ､Ｑｾ＠ who look different, ｲｾＺＺｲｰ＼＾ｮ､＠ when tMy arc asked to cr..:ute u $1.(lT)' at:ollt themselves u!.ina: pictw-.sand wo,ds. If you would t:kn, you CIUl be in mptudy.

IJ'}'cy. The g10up will rucc12 timM" week ｦｾｲ＠ｾ＠ "'eeklr. On the Ja>t doy J will a$\( }'l>U 10 ｾＮ･ｬｊ＠ｹｾｬｊＮｲ＠ $tory to your ｰ｡ｾ｣ＺｮｴＺｾ＠ tuld pe-w.e. Thc.n y()u Bnd I wiU talk al"'>\ILYOtlr experitnce.

Tbc benefit1 to participating in thi$ f-1 1Jdy include: learning mo-re llboo1. )'(her• undtt.t hapf"ltty \bat will help !'00 tdk with uollen< o1>Jul )'Out

Olher people wiD notkmw if you ｯｾ＠ io ou< you wiD be .,.,.,hi,red with lhingo I 1Clm1000UI mile< children..., no ooc will know wbat tbin!l' ca>11o (tom )'OU. \Vh2nl tc;Jl others about ru)' ｾＱｴＮ｡｣ｴｬｬＬ＠ ) wiU not usc )'0\1 ns:me, l have to get p;nnis:;iuu rnnl"' Yf'IUt ｰ｡ｬｾｮｴｓ＠ or guardim tQ Jc:t ym.l be in the Stlldy. After they ､･｣ｩ､ｾＬ＠ you ｾｉ＠ !ott) ｾｴｴ＠ to teU me if you want to do illt)O. You do not have to be in tho study if you do n<•t wanr too. l will uot ｾ｣＠ nuuJ 11m.l iC )'OU decide that you ｗｾｬｮｴ＠ to bo ir. ｴｨｾ＠ study and ｣ｨＱｭｾ･＠ yom mind. tlutt':s <>kKy t(lu, You can stop aC any time.

J wHI copy this form Sh thnt you eon contttel. me ifyou bO\'e lil."l}' questions and lt> n;m;nrl you ofwbnt the: 1'114Jd)' ｩｾ＠ about

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187

ｐｨｯｴｯｾｲｦｴｰｬｴｩ｣Ｏｖｩ､･ｯ＠ COd:fMt form and ｒｴｬｾｾｾｾ＠

Nome: (Pl•.,• Pllawina ｰｵｲｰｯＺｾｯｳ＠

0 NONCOMMERCIAl- J'llliC:A TIONIIL PURPOOf.S

0 Pt:BllCAT!ON IN PROFJ(!!StONAL JOUR.'I.-\L

0 PJWSI.iNli\TION AT ｐｒｏｆｆＮｾｓｊｏｎＺ｜ｌｃｏｎｆｅｒｅｉＧｃｉ［ｳ＠

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I, DI1ANDRL\ FllAMO:H, AGRI!·E TO !!ATil:GUI\IUl VOU:K CONf!Df,.N1:1At.ITV

188

Appendix A Parent Consent Fonn

I, DeAndria Fraz:iH, am a doctorial candidate in the An Educ.atioa:l Program at Florida State Uuhtersiry. The purpose of my mearcb is to ideDrify bow children \lith dis:6,go1emmts (\tisible differeoces) \\ill respond wben asked to create, iihmrate, a:od telJ a story that incoa:porates their \'isible differeoce in some mamw within the story comw. Tbese \isll>le differences will be defined tbrougb 3 disfigurement categories: Conpllital disfiguremem, mea:oing a ､ｩｳｦｩｧｵＺｲｾ＠ that occurs dlroogb ｾｯ･ｴｩ｣＠ inberitaoce, Tratunatic disfigurement, defined as acquired as a result of an accideDt, and disease ｰｲｯ｣･ｳｾ＠ defined as related to a disease acquired by tbe individual A qualified meDta.l bealib p!O\'ider will determin.e if participants are representari\.1e ofthe c-ategories defioed..

Three children \\ill be asked to participate io ibis sndy. Ooe cbi1d \\ill represeat each category. Bach must also ba\>e ｳ･ｬｦｾｴ･･ｭ＠ issues which are re.Jated to tbeir being visibly differeot.. 'The rese:arcb is to take place twice a wee* for 6 weeks with the panicipam participating io bodl an entmJCe a:od exit intm-i.ew. and indhidual story creation sessions. Eacb inrentiew will last 30 minutes and eacb iodi\"idu.al session will be coDd.ttcted for 1 hour. All illtervie\\'S aDd indj:\oidual sessions wiJI rake place oo the hospital grouods. Participants \\ill also be obsen:ed 3 timei, at school, in their c.bssroom senings. Tbese observations \\ill take place d.ttring tbe begilming, ｭｩｾ＠ a:od eod oftbe study. All part'Dlll guardia:os will be asked to compl-ete a paremal questioa:maire regarding their chiJd•s visible d.if£ereoce. This quesriollll8ire \\ill take 10 to 15 minutes to complete.

The research proposed requires each participa:ot to create a story iocorpora:ting his or her visible difference in the story coDttXt iD some marmer. Tbe panicipaot:s will be asked to create their owo story ｾ＠ draw their O\\'D pktures, and tell their stories aloud to pareots aod peers. The mearcb8 \\ill as.sist participants in these taSks.

Througbout ibe 6 week process, tbe researcher will arilize a \"ideo camera to r&ord each group session aod a tape playa to record intentie-ws. These recordings will be used to bel.p tbe researcb8 mtie-w aod analyze data \\'ithio the research. The researcher will also photograph tbe an wed of each parricipw so that it migln be presemed aJoog with tbe research 6Ddings aod discussed d.ttring tbe researc.ber•s disSHtatioo defense at Florida State University.

During the mearcb process all material will be ke.pt in a locked cabinet oo tbe hospital grouods. After completion of dle research, aU recordiogs, data, and tm\\-amed an \\'Ork will be kept in a locked cabinet in tbe office of my committee chair, Dr. Marcia RoiaJ, at Florida State Uni\>ersity for m-o years. After tbe two years haw expi!ed the data \\iJJ be destto)'ed.

Patticipmts io dlis research will complete various sketches aod drafts before complEting a story. These ｩｭ｡ｧｾ＠ alOQg with tbe fica) storybook, will be retw'lled to the participants after compJelioo of the murch.

There are ｳ･ＭｾｯＭｷ｡ｬ＠ beoefits to participating io this study. Tbe first includes gaiDing a better awareness of ooe self and the ability to betp society better tmdemaad some of the issues faced by iodi\'iduaJs \\iib visible differ.mces. Secoodly, participants will able to express feeliDgs related to being \i.slOly diffetut. Finally, the creation of a stOJybook might assist participants in becoming more comfonable wiib discussing their \isl01e differences \\ith others.

The research to be coDdnc.ted is a:o experimeDtal one aod there is some level of risk im-oh-ed in tbe participation of this srudy. As a result of participatillg tbeir may be feelings of a:wciety related to the discussion ofoo.es visible difference. Tbe group sessi001S wiD prO\ide the opportunity to discuss any emotional chscomfon experienced wbile participating. Also, a participant may be pulled out of the study at any time by a meDtal health profession ifhe or she deems that the study's impact is c.ansiog psycbol.ogic:al harm

FSU Human Subjects Committee approved on 6/ 9/2011. Void after 6/6/2012. HSC# 2011.6432

189

Participation is complete.J.y voluntary and )'OU may stop participation at my time.. Participams ba\--e the rigbt to keep their work coofi.deatial or place their na:mes oo tbe project created, to tbe e:aeDt aUO\\·ed by law. The use oftbe an wotk may be published and used for educational pmposes \lith the consem of the participant using ones mme or p.seudooym, wbkbeve:r the participant or gn:a:rdian prefers.

This coosmt may be \\ithdrawuat any time \\itb.out pre-judice, penalty or J05s ofbe.oefits to which you are otherwise .mtitled.

You may cODtaet me, DeAndria Frazier at405-8J6-330S, my faculty chair, Dr. Marcia Rosa!, at Fknida State Univm:iry, An Education departDlellt atSS0-644-2926, or ibe Florida State Uni\--ersity lostituti.oo:aJ Re\iew Board at 850444--8633, for toore answers to questions about this study or )'OUr rights.

I, . have beeo gi\•.m tbe rights to ask and bave answered aoy iDqttiry coocerniog the study. Question. ifany , bne bem answered to my satisfactioo. I bave read and uodentand this ｣ｯｯｳｾ＠ form a:od I frffiy and \-ohmtariJy coo-seat to be a parricipw in the study.

I ba\-e read aod ondem.aod this consent form aod give com.em for my child---,--,,-= --• to participate in the rese:a:rcb srudy.

Participamr'Guardia:D (priul:) Dm

ParticipaatfGuardia:D (Signature)

FSU Human Subjects Committee approved on 6/9/2011. Void after 6/6/2012. HSC# 2011.6432

190

Email and Correspondence Script

To whom it may concern,

Hello, my name is DeAndria Frazier, and I am a doctorial candidate at Florida State University, under the direction ofDr. Marcia Rosa! in the Art Education department. I am writing you because I am seeking your facilities participation in my research study called ''How ViSibly Different Children Respond to Story Creation".

The study reqnires children with disfigurements (visible differences) and low self-esteem to create, illuslrate, and tell a story about themselves, incorporating their visible difference within the story context.

The study will take place twice a week for 6 weeks, with the children participating in an entrance. and exit interview. Both the inteiViews and story creating sessions will be conducted individually. Interviews will be recorded and individual sessions will be videotaped to ensure accurate data collection. This process will take place in an outpatient setting on your hospital grounds to maintain'n the psychological well being of the participants in the study.

Before the study begins, a lead mental health professional from your facility will select eligrble participants for the study. He or she will be asked to observe selected participants throughout the study in an effort to monitor the participant's psychological well being.

After eligrble participants have been chosen, I will speak with both the children and parental guardians to inform them of the nature of the study, its process, and obtain consent.

I assure you that I am qualified to work with this population. I have a master's degree in Human Relations counseling and Art Therapy. I have also worked extensively with children and adolescents.

Thank you so much for taking the time to consider my research study. If your facility would like to be apart of this if there you may contact me, DeAndria Frazier Rosa! or the Institutional! Re'mw

Respectfully,

DeAndria Frazier

FSU Human Subjects Committee approved on 6/9/2011. Void after 6/6/2012. HSC# 2011.6432

191

Child Assent Form

Hello, my name is De Andria Frazier. I have been told that you are aware that a part of your body looks ､ｩｦｦｾｊｬｴ＠ than most children. I am trying to learn about how children, who look different, respond when they are asked to create a story about themselves using pictures and words. Ifyou would like, you can be in my study.

If you decide to be in my study, I will talk to you about your special difference. Then you will be asked to write and draw a story, using your special difference in part of the story. I will meet with you 2 times a wed< for 6 weeks. On the last day I will ask you to tell your story to your parents and peers. Then you and I will talk about your e.-.perience.

The beJlefits to participating in this study include: learning more about yoursili and your special difference, helping others understand what happened to you, and creating a story that will help you talk with others about your special ､ｩｦｦｾＮ＠

Other people will not know if you are in my study. Things I leam about you will be combined with things I leam about other children, so no one will know what things came from you. When I tell others about my research, I will not use you name.

I have to get permission from your parents or guardian to let you be in the study. After they decide, you also get to tell me if you want to do it too. You do not have to be in the study if you do not want too. I will not be mad and ifyou decide that you want to be in the study and change your mind, that's okay too. You can stop at any time.

My phone number - ou can call me if you have any questions about the study or if you do ｮｾ･＠ study any more.

I will copy this form so that you can contact me if you have any questions and to remind you of what the study is about.

Agretment

I, have decide to be apart of the study. DeAndria Frarier has answered all of my questions and I know that I do not have to do the study if! do not want to do it.

Siguature of Study Participant!Date

Siguature of Researcher/Date

FSU Human Subjects Committee approved on 6/9/2011. Void after 6/6/2012. HSC# 2011.6432

192

Photogl'apbic/\"ldeo Consent Fot·m and Release

Name: (Please. Ptint): .-:-:= -;;-,,------I do hereby consent and agree that has the right to take photographs and/or record video of my child and his or her art work during the research study "How Visibly Different Children Respond to Story Creation". I also consent and agree that the photographs and research findings may be used for the following purposes: 0 NONCOMMERCIAL EDUCATIONAL PURPOSES

0 PUBliCATION IN PROFESSIONAL JOURNAL 0 PRESENTATION AT PROFESSIONAL CONFERENCES

I represent that I am at least I 8 yeas of age, have read and understand the foregoing statement, and am competent to execnte this agreement.

Signature:------Date:------ａ､､ｲ･ｳｳ］ＭＭＭＭＭＭＭＭＭＭｾＭｾＭＭＭＭＭＭＭＭ

Phone: ------:-7-::---'. Guardian (Required for minor): ______Date: ____

I, DEANDRIA FRAZIER, ACREE TO SAFEGUARD YOUR CONFIDEl'1'11ALITY.

FSU Human Subjects Committee approved on 6/9/2011. Void after 6/6/2012. HSC# 2011.6432

193

Cin.leo•e \\"as 11M tWid cllsfipnd t ..roa,P birtll! Yes ｾｯ＠ (U. iMiu•IMIII.U, dtlt tiplpbr., or lllislia: body put)

U ru, ....t wu tM birrtl a.baorraalir,.! ------

Waa tW t:Wid ､ｩｳＺｲｾ＠ tllna.P tnaaa! Yes No CU.. bvu, ur atticlftt. lar-•rario.s, assault by nim.a.l or iadiridul)

Waa tiM ｴＺｾ､＠ did'i_pnd tkrou&)l disuse? Yes No ('Le., t ..«r, dtrmatolop.tal toadirioa sut.h u a.ne or ｾｮｭ｡Ｉ＠

1( )._.1, wlu.t waa 1U cfiM..aae? ------

How did the clhea.se uuae tlle did'igunmeat? ＭＭｾＭＭＺＭＺＭＭＭＭＭＭＭＭ

FSU Human SUbjl!aS Committ•• approved on 6/9/2011. Void after 6/ 6/ 2012. HSOI 2011.6432

194

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BIOGRAPHICAL SKETCH

DeAndria Frazier

I was born in Oklahoma and have lived their most of my life. I graduated for The University of

Oklahom in 1995 with a degree in Psychology. I have received two Master Degrees. One in 1999 from The Univiersity of Oklahoma in Human Relations and the other in 2005 from The Florida

State University in Art Education with an emphasis in Art therapy under the direction of Dr.

Marcia Rosal.

My interests include understanding how storytelling can impact children with visible differences, counseling and teaching. I also enjoy drawing, gardening and creating art with my hands.

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