Copyright holder: Tyndale University, 3377 Bayview Ave., Toronto, Ontario, Canada M2M 3S4 Att.: Library Director, J. William Horsey Library Copyright: This Work has been made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws of Canada without the written authority from the copyright owner. Copyright license: Attribution-NonCommercial-NoDerivatives 4.0 International License Citation: Malnick, Heather Jean. “Designing a Storybook Based on Matthew 19:13-15 to Share Faith with Primary School-Aged Children with Autism Spectrum Disorder.” D. Min., Tyndale University College & Seminary, 2018. ***** Begin Content ****** TYNDALE UNIVERSITY 3377 Bayview Avenue Toronto, ON M2M 3S4 TEL: 416.226.6620 www.tyndale.ca Note: This Work has been made available by the authority of the copyright owner solely for the purpose of private study and research and may not be copied or reproduced except as permitted by the copyright laws of Canada without the written authority from the copyright owner. Malnick, Heather Jean. “Designing a Storybook Based on Matthew 19:13-15 to Share Faith with Primary School-Aged Children with Autism Spectrum Disorder.” D. Min., Tyndale University College & Seminary, 2018. [ Citation Page ] Tyndale University College and Seminary Designing a Storybook Based on Matthew 19:13-15 to Share Faith with Primary School-Aged Children with Autism Spectrum Disorder A Thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Ministry Tyndale University College & Seminary by Heather Jean Malnick Toronto, Canada March 2018 [ Title Page ] Copyright © 2018 by Heather Jean Malnick All rights reserved [ Title Page Verso ] ABSTRACT The number of children diagnosed with Autism Spectrum Disorder has increased in Canada, which is reflected at Living Faith Community Presbyterian Church in Baxter, Ontario, where the number of special needs children has also risen in the past eight years. Despite this increase, faith-based resources created for children with ASD are scarce. In response, this research project reviewed existing sociological, psychological and theological literature—accompanied by data obtained from a parent focus group, expert review, and professional feedback—to create a faith-based storybook using communication techniques specified for children with ASD. Field study incorporated the Action Research method of inquiry. [ Page ] vi ACKNOWLEDGEMENTS I am so thankful for the patience and support of my family who have encouraged me throughout my Doctor of Ministry studies. They have served as cheerleaders and sounding boards throughout the process. I also would like to acknowledge the families at Living Faith Community Presbyterian Church who shared their experiences with me and gave me valuable feedback, resulting in the creation of this faith-based storybook for children with ASD. They have illustrated to me what self-less love and care truly look like. I am especially grateful to my thesis advisor, Rev. Dr. Bill Thornton, who was the one who suggested the creation of a specialised storybook in the first place and who guided and directed me throughout the process, along with my fellow classmates of cohort ML7 for their feedback and encouragement. My thanks and love are extended to my husband, John, who is not only a gifted artist but also a patient partner; and, to our son, Ben, who has expanded my understanding of what it means to let the little children come to Jesus. [ Page ] vii TABLE OF CONTENTS LIST OF ABBREVIATIONS .... xi CHAPTER 1: INTRODUCTION .... 1 Statement of the Problem or Opportunity .... 1 Ministry Context .... 5 Personal Context .... 7 The Innovation .... 8 Key Terms .... 10 Limitations .... 12 CHAPTER 2: THEOLOGICAL FRAMEWORK .... 15 Theology of Welcome and Hospitality .... 16 Theology of Imago Dei in the Face of Disability .... 21 Theology of Purpose and Congregational Contribution .... 27 Exegesis of Matthew 19:13-15 .... 32 CHAPTER 3: PRECEDENT SOCIAL SCIENCE LITERATURE AND CASES .... 38 Storybook Content: Needs and Challenges Facing the Child with ASD .... 39 Autism Defined .... 39 Sensory Integration Disorder .... 41 Anxiety in the Child with ASD .... 44 Storybook Format: Communication Exceptionalities, Language, Font, Illustrations .... 47 Communication Exceptionalities .... 48 Language .... 49 Font and Illustrations .... 52 CHAPTER 4: METHODOLOGY AND PROJECT .... 56 Scope .... 56 Methodology .... 57 Sources of Data and Feedback .... 59 Parent Focus Group .... 59 Expert Review .... 60 Professional Feedback .... 62 Ethical Considerations .... 63 Storybook Creation and Subsequent Completion .... 64 Summary .... 66 [ Page ] viii CHAPTER 5: RESEARCH FINDINGS AND INTERPRETATION .... 67 Creation of the First Draft .... 67 Parent Focus Group .... 68 Expert Review .... 70 Joan Gullen, Communications Specialist .... 70 Susan Collingborne, Resource Teacher, Baxter Public School .... 72 Carolyn Morris, Children’s Author .... 73 Professional Feedback .... 75 Lisa Sawden, Director of Children’s Ministry .... 75 Nancy Gallant, Director of Family Ministries .... 76 Creating the Storybook’s Final Version .... 78 Parent Focus Group .... 78 Expert Review .... 81 Joan Gullen, Communications Specialist .... 81 Susan Collingborne, Special Education Resource Teacher, Baxter Public School .... 83 Carolyn Morris, Children’s Author .... 84 Professional Feedback .... 86 Lisa Sawden, Director of Children’s Ministry .... 86 Nancy Gallant, Director of Family Ministries .... 87 Summary .... 88 Unexpected Outcomes .... 89 CHAPTER 6: CONCLUSIONS AND IMPLICATIONS .... 90 Conclusions .... 90 Storybook Content .... 91 Storybook Format .... 93 Implications .... 94 At Living Faith .... 94 Beyond Living Faith .... 95 Beyond Autism .... 96 Possible Next Steps .... 97 Personal Reflection .... 99 APPENDICES .... 101 Appendix A: Parent Focus Group Questions .... 102 Appendix B: Questions for Parent Focus Group After Engaging with the First Draft of the Storybook for One Month .... 103 Appendix C: Questions for Expert Reviewers .... 104 Appendix D: Questions for Professional Feedback .... 105 Appendix F: Information Letter for Participants in the Parent Focus Group .... 106 Appendix G: Research Study Consent Form for Participants in Parent Focus Group .... 108 [ Page ] ix Appendix H: Information Letter Regarding Research Project for Expert Reviewers and Professional Feedback .... 110 Appendix I: Research Study Consent Form for Expert Reviewers and Professional Feedback .... 112 Appendix J: First Draft of the Storybook .... 113 Appendix K: Final copy of the storybook .... 137 REFERENCE LIST .... 160 [ Page ] x LIST OF ABBREVIATIONS ASD Autism Spectrum Disorder Living Faith CPC CPC is used to denote Community Presbyterian Church as an abbreviation, but also to differentiate the name of the congregation from Living Faith, one of the subordinate standards of The Presbyterian Church in Canada. NIV New International Version of the Bible. All scripture is from the NIV unless otherwise noted. PCC The Presbyterian Church in Canada [ Page ] xi CHAPTER 1: INTRODUCTION The unique communication challenges and socio-psychological exceptionalities of children with Autism Spectrum Disorder (ASD) have been researched to create a specialised storybook based on Matthew 19:13-15. Data was obtained from a parent focus group, expert review, and professional feedback as well as from an extensive analysis of existing neurological, sociological, psychological and theological literature. This chapter will outline the background leading up to this research project, including information regarding the ministry context, the reasoning behind the need for such a specialised storybook, and an acknowledgement of the limitations present in this research. Statement of the Problem or Opportunity In recent years, it has become evident that a number of families who have children with special needs, specifically ASD, have found a spiritual home at Living Faith Community Presbyterian Church (Living Faith CPC) in Baxter, Ontario. The attendance records from “The Bridge” children’s ministry indicate that the number of children with special needs has increased fourfold over the past eight years, from three to twelve primary school-age children. This trend is also being observed in our mid-week ministries. This falls in line with the results of a [ Page ] 1 2012 study from the National Epidemiologic Database for the Study of Autism in Canada (NEDSAC), indicating a 170% increase in the instances of ASD diagnoses in children ages two to four in south-eastern Ontario from 2003 to 2010 (Ouellette-Kuntz 2012, 15). Moreover, the Centre for Disease Control in the United States estimates that one in sixty-eight children has been identified with ASD, or 14.7 per 1,000 eight-year-olds (Baio 2010, 1), and within this population 75% are boys (Zablostky 2015, 4). This brings many joys to the congregation, as well as some challenges. Early in 2015, the session at Living Faith CFC met to specifically discuss these joys and challenges. The teachers and volunteers involved in our children’s ministries had expressed concern regarding their ability to create a safe and nurturing environment within the classroom, while also teaching the tenets of faith, when responding to the unique needs of the students with ASD. The teaching environment was sometimes compromised when a student’s exceptionalities were not being met, resulting in behaviours that negatively impacted the entire classroom. In response to this request for assistance from our teachers and volunteers, the session formed an ad-hoc children’s ministry sub- committee with a three-fold mandate: 1) to study the changing needs of our growing children’s ministry; 2) to learn more about the unique requirements of children with ASD; and, 3) to discover how we could meet those needs as a family of faith. After a five-month analysis, the sub-committee presented the following recommendations to the session, all of which were unanimously approved: [ Page ] 2 • That funding be secured from The Presbyterian Church in Canada’s Creative Children’s Ministry grant to create a sensory room to provide a safe place where children with ASD can go when feeling overwhelmed or overstimulated in the regular classroom; • That a specialised staff person be hired from this same fund to oversee children with ASD in the classroom and while attending the sensory room; • That appropriate curriculum be purchased to meet the distinct learning styles of children with ASD. Despite securing the required funding and implementing all the recommendations from the sub-committee, our teachers and volunteers still expressed frustration in finding resources and materials that addressed the unique educational and social challenges experienced by children with ASD. According to Barbara J. Newman in Autism and Your Church: Nurturing the Spiritual Growth of People with Autism Spectrum Disorder, people with ASD typically struggle with language understanding, social skills, repetitive themes and behaviours, desire for routine, perspective-taking ability, and sensory responses (Newman 2011, 24). Ann Memmott, an adult with ASD who advises churches on autism inclusion, states “eight out of ten of us think visually rather than in words, which means that we try to visualise what a word looks like or what someone would be doing. This is why metaphors and expressions can be such a struggle for us” (Phelps-Jones et al 2013, 78). Our most common methods of communication, which tend to be word-centric and metaphor-based in the church, can, in fact, [ Page ] 3 become barriers when sharing faith with the child with ASD. The unique learning and processing behaviours can be challenging, but they also present opportunities to discover methods of faith formation that are relevant and meaningful to children with ASD. Along with the challenges around language and learning, children with ASD are also more likely to suffer from sensory integration and anxiety disorders (Merill n/d, webpage). Tony Attwood, quoted by Rachel Evans in her article “Autism Anxiety Overload,” states that “Autism is anxiety looking for a target. Autism and anxiety go hand-in-hand. Autism affects a person’s ability to communicate with others or to understand the world around him [sic], and that’s bound to cause anxiety” (Evans 2006, np). Cindy Hatch-Rasmussen, in her article “Sensory Integration” (located on the autism.com website), states that “sensory integrative dysfunction is a disorder in which sensory input is not integrated or organized appropriately in the brain and may produce varying degrees of problems in development, information processing, and behavior” (Hatch- Rasmussen n/d, webpage). In response, the sensory room which has been implemented at Living Faith CPC, along with the specialised staff person, provide a place and environment where children with ASD can go when feeling overwhelmed in the regular classroom. However, sharing faith involves more than simply providing appropriate space for learning—it also requires fitting resources. The educators at Living Faith CPC continued to be challenged in finding material that considered the unique communication exceptionalities of children with ASD, [ Page ] 4 making it difficult for the tenets of faith to be shared in ways that were meaningful and relevant. Another challenge—as well as an opportunity—of ministry to children with ASD involves interaction with parents and families. Often, within the church, the unique needs of children with ASD are not considered, leaving parents frustrated and children unreached. Shelli Allen is the mother of two children with autism and has co-authored a book called Steps with Linda Barboa in which she describes the frustration parents often experience when attempting to attend church with their children with ASD (Allen 2014, 20). She states that families often don’t go to church, even though they desire to do so, or they do church at home because the church often does not support those with special needs (Allen 2014, 20). The leadership team at Living Faith CPC feels called to partner with families to create a space of warmth and welcome for all, addressing the unique challenges of those with special needs. Leaders at Living Faith CPC have explored, and continue to examine, a theology of welcome and hospitality, discovering new innovative methods of engaging others with the gospel of Jesus Christ. Ministry Context Living Faith CPC is a congregation of approximately 150 members located in the small hamlet of Baxter in rural Ontario and is a member of The Presbyterian Church in Canada (PCC). Despite its small population and rural location, Baxter is a vibrant community consisting of many families with young [ Page ] 5 children. Living Faith CPC is located across the street from Baxter Public School; an elementary school which serves around 350 students from Junior Kindergarten to Grade Eight. Due to this proximity to the school and its accompanying families and children, Living Faith CPC has embraced a family-based style of ministry, offering midweek opportunities for children and their families to gather for spiritual development along with the regular Sunday morning worship experience. Such ministries include the “Holy Moly” after school club for children from Junior Kindergarten to Grade Four, “NRG” (say it fast-“energy”) junior youth group for children in Grades Five to Eight, “AMPed” senior youth group for high school-aged teenagers, as well as “Messy Church,” which is an intergenerational monthly event consisting of a meal, worship, and interactive faith-based activities. The Sunday morning worship service also includes education for children from infancy to Grade Eight in what is called “The Bridge” children’s ministry. While Living Faith CPC is a fairly new congregation, its roots date back over 150 years as it was formed following the amalgamation of the former Baxter and Cookstown Presbyterian Churches. For several decades, Baxter, Cookstown, and Ivy Presbyterian Churches formed a three-point pastoral charge being led by one ordained minister. In 2003, the Baxter and Cookstown congregations decided to amalgamate and form a new worshipping community called Living Faith Community Presbyterian Church, selling their buildings and constructing a new house of worship. The Ivy congregation decided to remain on its own but maintains a close relationship with Living Faith CPC. [ Page ] 6 Personal Context My journey with Living Faith CPC has been a unique one which has not followed the traditional path to ordination within The Presbyterian Church in Canada. My family and I began attending the Baxter Presbyterian Church in 1995 after moving back to Ontario from New Brunswick. I quickly became involved in teaching Sunday school and youth group and in 2000 was hired as the Christian Education Consultant for the three-point pastoral charge of Baxter, Ivy, and Cookstown. It was during this time that I discerned a call to ordained ministry and returned to school in 2003 to complete a Master of Divinity degree at Knox College, University of Toronto. Upon the resignation of our minister at the end of 2003, the Presbytery of Barrie appointed me to serve as the Student Minister. Our three congregations were in the midst of discussions involving amalgamation and the creation of the new congregation, so the Presbytery determined that my leadership would provide continuity and consistency. Upon my graduation from Knox College in 2006 I was ordained to the congregation as their Minister of Word and Sacrament. While this journey is unorthodox, it has resulted in the formation of a close relationship with the congregation as we journeyed together through the seasons of education, amalgamation, and the eventual construction of our new church building in 2007. This journey continues as we share together this Doctor of Ministry experience. My interest in ASD is a personal one. Our youngest son was born in 1997 and it quickly became evident to us that he was developing differently than his [ Page ] 7 older brothers. He was particularly sensitive to sensory input-especially light and sounds-and he relished routine and predictability. These particularities were easily handled in the home but became more problematic once he entered school. Originally diagnosed with a learning disability in Grade Three, this didn’t explain his sensory integration challenges and social anxiety. We knew a piece of the puzzle was still missing. Finally, when he was in Grade Seven, a diagnosis of what was then called PDD-NOS (pervasive developmental disorder not otherwise specified, now classified as high functioning autism) provided us with an explanation and opened the pathway to additional resources and educational support. The Innovation Upon discovering a gap in effective communication for children with ASD within the congregation, plans were made to fill this void. The innovation is a specialised storybook geared for primary school-age children with ASD using methods of communication that assist the child in learning about Jesus’ acceptance and love as described in Matthew 19:13-15. In this Bible story, Jesus welcomes little children to come to him despite the disciples’ attempts to keep the children away. Using the method of Action Research, a parent focus group was established consisting of parents who have children with ASD at Living Faith CPC. Their experiences and challenges were shared, providing data necessary for the creation of a first draft of the storybook. Interviews were also conducted with experts in the field of autism and children’s literature as well as with professionals [ Page ] 8 who work alongside children at Living Faith CPC. This data, coupled with the information obtained from a socio-psychological literature review, resulted in the formation of a storybook with a young boy (Daniel) as the main character. Daniel is enamoured with penguins and desires to talk about them frequently—even at times when it is not appropriate. The storybook illustrates coping skills and techniques to help alleviate his anxiety when waiting to talk about penguins and assists him in discovering how his actions may impact the emotions of others. The storybook utilises comic-style illustrations and the Social Stories™ communication method, as defined in the literature review and recommended by the expert reviewers. Upon the completion of the first draft of the storybook, members of the parent focus group were given an opportunity to share the book with their children for a period of one month. The expert reviewers and Living Faith professionals were also given copies of the first draft which they reviewed for two to three weeks. Members of the parent focus group provided their opinions and feedback via email while the expert reviewers and professionals were interviewed in person a second time. The data obtained from these sources contributed to the creation of the final version of the storybook. In the dedication to her book Fringe: My Life as a Spirit-Filled Christian with Asperger’s Syndrome, author Stephanie A. Mayberry states that when she entered into a relationship with Jesus Christ, she knew she had “found the place where I belonged” (Mayberry 2010, dedication). This sense of belonging is made visible through Jesus Christ who invites little children to come to him as outlined [ Page ] 9 in Matthew 19:14. This storybook will be implemented in Living Faith’s sensory room, and hopefully by families in the home, to assist in sharing this message of love and acceptance. Key Terms Asperger Syndrome: A condition named after Austrian paediatrician Hans Asperger in 1944, also known as ‘high functioning autism,’ which manifests itself in anxiety, social awkwardness, high focus on a single topic or issue, but without the linguistic or cognitive impairment often observed in autism. Autism Spectrum Disorder (ASD): A group of complex disorders of brain development characterised, in varying degrees, by difficulties in social interaction, sensory integration, verbal and nonverbal communication, and repetitive behaviours. Prior to May 2013, autism spectrum disorders were divided into distinct sub-types, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. Book of Forms (B of F): A collection of rules and guidelines established by The Presbyterian Church in Canada (PCC) to oversee every aspect of congregational life. The B of F is revised each year at General Assembly, the highest court of the PCC. Diagnostic and Statistical Manual of Mental Disorders (DSM-5): The evaluative criteria released in May 2013 used by the Centre for Disease [ Page ] 10 Control to diagnose Autism Spectrum Disorder. DSM-5 replaces DSM-4 which divided ASD into distinct sub-types, each requiring a separate diagnosis. Defence Mode: A state of mind used to describe a person with ASD who is unable to cope in a particular context due to anxiety or sensory integration disorder. Defence Mode can manifest itself in anti-social behaviours or the need to remove oneself from the situation. Living Faith: One of the subordinate standards of the PCC outlining what the denomination believes regarding various matters of faith, such as God in Jesus Christ, the Holy Spirit, worship, evangelism, justice, and the sacraments. Living Faith Community Presbyterian Church (CPC): The name of the congregation where this research project was conducted. Primary School-Age: For the purposes of this research, primary school-age children will refer to children from Junior Kindergarten to Grade Three, generally between the ages of four and eight. Sensory Integration Disorder: A condition common among many people diagnosed with ASD reflected in the inability to integrate sensory input adequately which results in aversion to certain sounds, lights, textures, smells, and tastes. Sensory Room/Snoezelen Room: A controlled multi-sensory environment for use with people with ASD and accompanying sensory integration disorder as a tool for relief, soothing, and/or stimulation. [ Page ] 11 Session: A body of elders elected by the congregation to provide spiritual, educational, and administrative oversight to a congregation within the PCC. At Living Faith CPC, the session consists of twelve elders, including men and women from the ages of seventeen to seventy-two. Within the PCC, the session meeting is a closed court where confidentiality is observed and visitors may only correspond with the court by permission. Theory of Mind (ToM): The intuitive ability to acknowledge the perspectives and viewpoints of other people. ToM is often lacking in children with ASD. Youth and Child Care Worker: An individual trained in supporting children and youth suffering from a variety of social, behavioural, emotional, and medical issues. Limitations While there are similarities among children on the autism spectrum, this research project was limited to the uniqueness of the children at Living Faith CPC, relying on the observations of their parents and teachers. This is a relatively small data sample and it is understood that the results could differ in other congregational settings. While directions were provided for parents to assist in the implementation of the storybook within the family routine—such as using it as a resource at bedtime or when a child is feeling overwhelmed and insecure—it was impossible to control how the book was actually used. [ Page ] 12 The objective of this research was to assist children with ASD connect with the message contained in Matthew 19:13-15 with the hope of strengthening their understanding of God and how God has created them to be. Measuring faith formation is challenging and the data obtained in this project was the result of the opinions of the participating parents and teachers, which are subject to personal bias. While the opinions obtained from the expert reviewers and professionals were potentially more objective, it is understood that they, too, were subject to bias and personal opinion. Another aspect of this research, which was not included in this project concerns the education of the wider congregation about the particular needs of children with ASD and their families. Sometimes lack of education or a misunderstanding of the situation can lead to disparaging remarks about a child’s behaviour or an unwillingness to engage with a family over fear of what to say. Regrettably, these misbehaviours have been observed at Living Faith CPC, especially during the informal time of fellowship following the Sunday morning worship service. Families of children with ASD may find themselves sitting alone at a table or overhear whispers about their child’s behaviour, making them feel unaccepted and unwanted. A time of education through a sermon series about who is included in the family of faith could help illustrate the challenges and joys faced by families of children with ASD and address notions about welcome, hospitality, and inclusion. The target age group for this research project was primary school-age children, with the understanding that youth, adults, and seniors with ASD have [ Page ] 13 not been addressed. Another limitation of this research project was its focus on ASD when there are so many other exceptionalities that may limit a person’s understanding of faith. It is beyond the scope of this project to delve into the various ways in which the church can respond to those with other special needs and exceptionalities; however, it would behoove the church to consider these unique challenges and discover new and engaging ways to share the stories of faith. [ Page ] 14 CHAPTER 2: THEOLOGICAL FRAMEWORK The purpose of this research is to create a children’s storybook which can be used by churches and families to share a message of love and acceptance to children with Autism Spectrum Disorder. Unfortunately, as discovered through conversation and research, many families with children with ASD have felt unwelcomed and isolated in congregational settings, creating an environment in which it is difficult for the child with ASD to receive and integrate the message of the gospel. In fact, some have encountered a theological dilemma in which the family’s faith has been questioned as an explanation for their child’s condition. In this section, literature in the areas of welcome, hospitality, and inclusion will be examined and analysed, integrating three theological foci to form a model of acceptance and purpose, discovering how children with ASD contribute to the identity of the body of faith, and ways in which the church, in turn, may respond. The three theological foci to be examined include the following: the theology of the local congregation as a place of welcome and hospitality; the theology of imago dei in the face of disability; and, the theology of purpose and congregational contribution among children with ASD in the community of faith. [ Page ] 15 Theology of Welcome and Hospitality The document titled Living Faith is one of the subordinate standards of The Presbyterian Church in Canada and provides a theological understanding of what the denomination believes on issues related to God, Jesus Christ, the Holy Spirit, the church in the world, our life in Christ, and our life in the wider world (Committee on Church Doctrine 1989, table of contents). Section 8.2 describes the “Christian Family” and states in section 8.2.6 that “The church is the family of God. Here all should be valued for themselves. We are one body in Christ: together rejoicing when things go well, supporting one another in sorrow, celebrating the goodness of God and the wonder of our redemption” (Committee on Church Doctrine 1989, 24). Creating community in Christ involves intentionally crafting an environment where all are celebrated just as they are, regardless of perceived disabilities or limitations. Jean Vanier in Community and Growth explains that to welcome “is to give space to someone in one’s heart, space for that person to be and to grow, space where the person knows that he or she is accepted just as they are, with their wounds and their gifts” (Vanier 1989, 265). This sentiment mirrors the teaching of Paul when he asserts, “There is neither Jew nor Greek, slave nor free, male nor female, for you are all one in Christ Jesus” (Galatians 3:28). As followers of Christ, Paul urges us to “accept one another, then, just as Christ accepted you, in order to bring praise to God” (Romans 15:7). In addition, Paul records, “If one member suffers, all suffer together; if one member is honored, all rejoice together” (1 Corinthians 12:26). [ Page ] 16 God’s family has many parts with each member deserving value and welcome for who they are and who they have been created to be. The welcoming inclusion of children with ASD in the family of faith can serve to uphold the common good of the entire body, with the gifts of all being employed and celebrated. In Every Child Welcome, co-authors Katie Wetherbee and Jolene Philo contend that “we’re the body of Christ, and we need the gifts of everyone to be a complete community” (Wetherbee and Philo 2015, 14). When children with ASD experience the welcome and hospitality of the local church, they may also discover a place where they are able to explore a fuller relationship with God. Unfortunately, as uncovered in this research, families of children with ASD—and the children themselves—have not always felt welcomed or accepted in the local church, denying them the opportunity to get to know God through Christian community. In his essay “Vulnerable Humanity: Disability and Community Beyond Normalcy,” Thomas E. Reynolds explains that a warm welcome is not always experienced by those with a disability, stating “too often they encounter a threshold that signals ‘access denied’—whether physical, behavioral, or attitudinal” (Reynolds 2007, 13). Reynolds recounts the sad tale of a man who was denied communion by his priest who declared “we don’t serve drunks here,” but the man was not drunk—he had cerebral palsy (Reynolds 2007, 13). When a child with ASD, or anyone deemed ‘different’, is denied welcome in the congregation, s/he may, in fact, feel unwelcomed by God. Conversely, an experience of warm welcome and hospitality by the church can signal divine [ Page ] 17 acceptance. Amy Oden, in her book God’s Welcome: Hospitality for a Gospel- Hungry World states that “an experience of God’s welcome allows one to see [oneself] as someone welcomed not only by the church, but by God. S/he will eventually be able to see [oneself] as a child of God, loved and received into God’s life” (Oden 2008, 14-15). In fact, Wetherbee and Philo indicate that a “gentle welcome can create a worshipful Sunday morning for the whole family” (Wetherbee and Philo 2015, 34). The church has been called the hands and feet of Christ, expressed through this poem attributed to 15th century Spanish mystic, Teresa of Avila, Christ has no body now but yours. No hands, no feet on earth but yours. Yours are the eyes through which he looks compassion on this world. Yours are the feet with which he walks to do good. Yours are the hands through which he blesses all the world. Yours are the hands, yours are the feet, yours are the eyes, you are his body. Christ has no body now on earth but yours. (carmelitedigitallibrary.com) But does the church extend welcoming hands and serve with accepting feet, reflecting those of Christ’s? In Supportive Care in the Congregation, co-authors Dean A. Preheim-Bartel and Aldred Neifeldt assert that “during his earthly ministry, Jesus exemplified love for those who were sick, poor, and living with disabilities,” adding that “the early church was a radical community that took seriously Christ’s call to care for widows and orphans, and persons who were poor and living with disabilities. The early church saw care for the vulnerable as a task belonging to the church” (Preheim-Bartel and Neifeldt 2011, 26). The church has the opportunity to extend welcoming hands and serving feet as a living illustration that God does not reject people with disabilities; rather, “God invites [ Page ] 18 all of us into wholeness, regardless of our abilities or disabilities” (Preheim-Bartel and Neifeldt 2011, 29). The disciple Peter experienced God’s all-inclusive welcome through an encounter with one who was outside the familiar community and declared, as phrased in The Message, “It’s God’s own truth, nothing could be plainer: God plays no favorites! It makes no difference who you are or where you’re from—if you want God and are ready to do as he says, the door is open” (Acts 10:34-35, [MSG]). Jean Vanier echoes this idea of inclusive welcome in Becoming Human, stating that “each of us needs to belong, not just to one person but to a family, friends, a group, and a culture” (Vanier 2008, 35) with the sentiment that extending welcome and hospitality to one who is perceived to be weak is, in fact, to strengthen the entire group. “Weakness carries within it a secret power. The cry and the trust that flow from weakness can open up hearts. The one who is weaker can call forth powers of love in the one who is stronger” (Vanier 2008, 40). Thus, extending welcome and hospitality to the child with ASD has the potential not only to allow the child to feel valued and loved by God and by others, but that love could indeed be extended to the wider congregation. While creating a welcoming and hospitable place for children with ASD is desired, how is it achieved? In Including People with Disabilities in Faith Communities, author Erik W. Carter explains that accessible space goes beyond the inclusion of an elevator, hearing-assistance devices, or, as in the case of Living Faith CPC, a sensory room. “It is through interactions and relationships with others that welcome is truly communicated” (Carter 2007, 29). Simple tasks [ Page ] 19 such as remembering a child’s name, asking about his/her family members or pets, using a method of communication that is meaningful to the child and then actively listening to his/her responses are all starting points. But Carter claims that true welcome and hospitality extend further; inviting families with children with ASD to lunch, celebrating their successes, standing beside them during trials, sharing life together, all communicate true inclusion and acceptance into the family of faith (Carter 2007, 29). Building meaningful relationships with all— including the child with ASD and their families—illustrates a congregation’s openness and willingness to adopt a theology of welcome and hospitality. Welcome and hospitality are also expressed when the teachings of the gospel are imparted in ways that take into consideration the various learning abilities of children with ASD. Access to the words of Jesus is as equally important as access to the building. Yet, in many church settings, the way Christian truth is imparted in teaching, preaching, and worship is complex and word-centric, making it difficult for many—not just children with ASD—to follow. According to Tony Phelps-Jones, “the key access issue for people with learning disabilities is access to truth” (Phelps-Jones 2013, 67). The stories of faith are often shared using simile and metaphor, but according to Stephanie A. Mayberry, an adult living with ASD, this form of communication can be confusing for someone who thinks in pictures, as she does. Metaphors such as “salt and light,” which are used to describe the life of a Christian (Matt 5:13-16), can be problematic when the child with ASD literally sees an inner picture of salt and light (Mayberry 201, 14). Well-known ASD advocate and author, Temple [ Page ] 20 Grandin, who is also on the autism spectrum, has written Thinking in Pictures: My Life with Autism to help bring light to the neuro-typical learner. She explains that when someone speaks to her, the words “are instantly translated into pictures” (Grandin 2006, 3), but there are some books in which it is difficult to convert text to pictures, rendering them meaningless (Grandin 2006, 15). In discussing her life of faith, Grandin advises that concepts of faith are often better received through actions and modelling. Teach the autistic child positive religious values. Instruct the child to live a good life where others are treated with kindness and respect. Abstract religious concepts will not be understood by many individuals on the spectrum. It is better to teach them how to be good citizens through a series of hands-on activities. (Grandin 2006, 242) For congregations striving to be places of welcome and hospitality to all— including those with ASD—inviting congregants to live out the tenets of faith in visible, practical ways is as important, if not more so, than solely teaching faith through the written and spoken word. Theology of Imago Dei in the Face of Disability The creation story in Genesis declares that every person on planet earth is created in the image of God (Gen. 1:27). The psalmist reiterates: “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well” (Ps. 139:13-14). This idea of imago dei—seeing God in his creation—is reflected by Jean Vanier when he states that becoming human “means to be someone, to have cultivated our gifts, and also be open to others, to [ Page ] 21 look at them not with a feeling of superiority but with eyes of respect. It means to become men and women with the wisdom of love” (Vanier 2008, 3). Ethicist and theologian Stanley Hauerwas reflects on the theology of disability with the observation, The demand to be normal can be tyrannical unless we understand that the normal condition of our being together is that we are all different. If we are to be a good community we must be one that has convictions substantive enough not to fear our differences and, indeed to see that we would not be whole without the other being different than us. (Hauerwas 2004, 40) Yet, the local church can sometimes be a place where some are made to feel inferior, as experienced by Shelli Allen and her two children with autism, who explains that many families don’t attend church, even though they would like to, because their children feel like they don’t fit in (Allen and Barboa 2014, 20). The broader definition of humanity in the face of disability is explored in light of editor Brian Brock’s question “what does it mean to be human?” who challenges the notion that some people are “broken” or “functionally deficient” (Brock 2012, 1). This stance asserts that those who are defined as being broken or deficient by the broader community are, indeed, equally created in the image of God with value and purpose (Brock 2012, 20). Stephanie A. Mayberry testifies, “God made me and even though I am different from many people, I was still created in his image. The Bible says that. It means that I was created to be like him, reflect him, to be spiritually like him. In that way I am just like everyone else” (Mayberry 2010, 23). And Jesus, himself, speaks to the value of all when he states, “Are not five sparrows sold for two pennies? Yet not one of them is [ Page ] 22 forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows” (Luke 12:6-7). But there are others who would say that those who are “broken” or “deficient” have been created outside of the will of God. In fact, the parent of a young child with autism from Living Faith CPC continually prays that the child will be “cured,” viewing the condition as something that needs to be fixed. Hauerwas argues that the problem stems in how the differently-abled are perceived by the averagely-abled, even purporting that those living in perceived weakness may, in fact, be closer to the imago dei. Although Hauerwas’ language would be deemed insensitive today, he wrote in 1986, “God’s face is the face of the retarded; God’s body is the body of the retarded; God’s being is that of the retarded. For the God we Christians must learn to worship is not a god of self- sufficient power, a god who in self-possession needs no one; rather, ours is a God who needs a people, who needs a son” (Hauerwas, 523). Weakness, according to Jean Vanier, can awaken hardness and anger in some people or, conversely, push some people into a form of possessive, unhealthy, love (Vanier 2008, 39). Yet weakness, “can also open up our hearts to compassion: the place where we are concerned for the growth and well-being of the weak” (Vanier 2008, 39). To be human is to acknowledge the strength and weakness of our condition as those created in the image of God. Nevertheless, people tend to value strength and denigrate weakness. What do the scriptures inform about disability? A discussion of imago dei must wrestle with the difficult scriptural texts and how they have been interpreted. [ Page ] 23 According to Reynolds, “a theological hermeneutic of disability involves a careful juxtaposition of texts which are themselves polyphonic and at times contradictory, so as to negotiate theologically between them and discern possible routes of fruitful analysis” (Reynolds 2008, 35). He advises avoiding the viewpoints of denigration and trivialisation; denigrating disability as a blemish or stigma or trivialising a disability by dismissing the concrete reality of the condition along with its personal and social implications (Reynolds 2008, 36-38). Reynolds states that these two viewpoints can be derived from the scriptures. The pericopes of the healing of the paralysed man (Luke 5:18-26) and the restoration of the man at the pool of Bethsaida (John 5:2-15) equate Jesus’ healing actions with forgiveness, implying that sin had caused the disability. Other healing stories, such as those found in the bleeding woman who touched Jesus’ garment (Mark 5:34), the restoration of sight to blind Bartimaeus (Mark 10:52), and the healing of the ten lepers (Luke 17:19) are resolved with Jesus declaring that the person’s faith has made them well. The implication can be derived that a lack of faith resulted in the original condition. Thus, the person with the condition was denigrated, seen as being less than a full member of God’s family of faith. “By treating disability as a faulted, person-defining condition, it is easy to take the next step and conjecture that the whole person is somehow imperfect, morally flawed or lacking adequate faith” (Reynolds 2008, 37). Yet, Nancy L. Eiesland in The Disabled God: Toward a Liberatory Theology of Disability questions how an equation of disability with sin can be made in light of the resurrected Christ with his impaired hands and feet and side. “The disabled God repudiates the conception of disability as a [ Page ] 24 consequence of individual sin. Injustice against persons with disabilities is surely sin; our bodies, however, are not artifacts of sin, original or otherwise” (Eiesland 1994, 101). Though none of us could ever assume to comprehend God’s justice or intentions, Eiesland adds that “our bodies participate in the imago dei, not in spite of our impairments and contingencies, but through them” (Eiesland 1994, 101). In solidarity with this argument is Reynolds’ assertion that the above-mentioned difficult biblical passages must be seen in light of other, life-giving, texts, such as those which bear witness to the broader vision of inclusive love and hospitality. Such texts include Matthew 25:34-46 in which Jesus declares, “whatever you did to the least of these brothers of mine, you did for me”; Luke 14:15-23 when the kingdom of God is equated with a banquet where “the poor, the crippled, the blind and the lame” are invited; and, John 9 when Jesus heals a man born blind and responds to his disciples’ questions, saying “neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life” (Reynolds 2008, 38). Reynold’s other viewpoint of trivialisation of disability is equally destructive and can result in feelings of objectification in the child with ASD. This view glibly dismisses the personal and social challenges that a child with ASD—or anyone living with a disability—may face. Reynolds explains that the trivialising perspective is classically patronising, reducing the person with a disability to an object upon which others can benefit (Reynolds 2008, 38). Scriptural references to needy beggars, the least of these, the imperfect, and those in need of grace can be used to support the idea of viewing such individuals as [ Page ] 25 candidates for Christian charity. “Pity becomes the operative mode of attending to persons with disability, a giving of what ‘we’ have in abundance to ‘them’” (Reynolds 2008, 39). While the intention might sound honourable, it dismisses the fact that the child with ASD has been created in the image of God, just as s/he is, with abilities and gifts which can add to—and enhance—the family of faith. Children with ASD are not objects for well-meaning Christians to fix or cure; they are members of the family of God with qualities and abilities that uphold and support the entire community. The acknowledgement that children with ASD, along with those with other exceptionalities, are created in the image of God invites us to stretch and broaden our understanding of the character of God. Scriptures refer to the need for a perfect sacrifice; one without blemish or stain, which is personified through Jesus Christ. Yet, Eiesland reminds that “in Jesus’ resurrection, the full and accessible presence of the disabled God is among us in our continuing human history, as people with disabilities, as the temporarily able-bodied, as church, and as communion of struggle” (Eiesland 1994, 107). She adds that Christ’s resurrection offers hope that our “nonconventional, and sometimes difficult, bodies participate fully in the imago dei and that God whose nature is love and who is on the side of justice and solidarity is touched by our experience” (Eiesland 1994, 107). The God of pierced hands, feet, and side is remembered through the bread and wine of communion in the local congregation, at a table where all are gathered to ‘taste and see that the Lord is good’. [ Page ] 26 Theology of Purpose and Congregational Contribution The theology of inclusion and acceptance, with all members contributing to the life of the church, is reflected by Paul, phrased in The Message: Each part gets its meaning from the body as a whole, not the other way around. The body we’re talking about is Christ’s body of chosen people. Each of us finds our meaning and function as a part of his body. But as a chopped-off finger or cut-off toe we wouldn’t amount to much, would we? So since we find ourselves fashioned into all these excellently formed and marvelously functioning parts in Christ’s body, let’s just go ahead and be what we were made to be, without enviously or pridefully comparing ourselves with each other, or trying to be something we aren’t. (Romans 12:4-6 [MSG]) Creating space where all members of Christ’s body—including children with ASD—are able to “go ahead and be what they were made to be” provides an opportunity for the entire community to explore and experience God and their role in his church. As Jean Vanier states, “To become a friend of Jesus is to become a friend of the excluded. As we learn to be a friend of the excluded, we enter into this amazing relationship that is friendship with God” (Vanier 2008, 41). Jesus exhibited the ability to befriend and empower those on the fringes, illustrating the wide-ranging scope of who is invited to contribute to his community. Raising the scorn of the Pharisees, Jesus dined with tax collectors (Luke 5:29-32) and was anointed by a ‘sinful woman’ (Luke 7:36-50). He found space in his ministry for women such as Mary Magdalene, Mary and Martha, the sisters of Lazarus, all of whom would have been marginalized due to their gender. Jesus invited participation from Zacchaeus, ostracised due to his stature and profession, along with the Samaritan woman, an outsider as a result of her citizenship and gender. This same sense of place and purpose is demonstrated when the local [ Page ] 27 congregation invites all—including children with ASD and those with other exceptionalities—to explore and experience faith in active and participatory ways within the broader family of faith. Stephanie A. Mayberry equates her participation in the congregation with her purpose for being, stating, “I am different. I can’t change that. However, I do feel that God put me here for a reason. He has a purpose for me just as he has a purpose for you. Everything I do, I do for God and everything I am, I am because of God” (Mayberry 2010, 22). When the church invites people of all abilities and exceptionalities to contribute to its function, it also provides opportunities for everyone to explore the gifts they have been given and how they can exercise those gifts in Christian community. Shelli Allen, the mother of two children with autism, explains that they, too, want to serve people and be a blessing to others, but unfortunately, they are often the last to be called on due to their limitations (Allen and Barboa 2014, 20). Yet when the church limits who is invited to participate, it restricts God’s abilities, thereby implying that God’s grace is insufficient in equipping servants for his church. Vanier echoes Jesus’ declaration in Matthew 19:26 that “with God all things are possible” with a reminder that what can seem to be an impossibility, humanly speaking, becomes possible when God calls a community together. “They no longer rely on their own human abilities or natural sympathies, but on their Father who has called them to live together. So then the impossible becomes possible” (Vanier 1989, 45). When all members find purpose in the community of faith, God’s great possibilities are on display. [ Page ] 28 The idea of God’s great possibilities is reflected by Parker Palmer who writes “community is finally a religious phenomenon. There is nothing capable of binding together willful, broken human selves except some transcendent power” (Palmer 1977, 18). Temple Grandin encourages educators and influencers to help children with ASD develop their talents, which in the church can serve as visible expressions of what God is capable of achieving through all of his children. She states that children with ASD “need to build on their strengths and use their interests” and can be encouraged to develop their abilities with the assistance of mentors and guides (Grandin 2006, 106). The local church can be a nurturing environment for developing mentorship programs, or other friendships, to help children with ASD build upon their strengths and interests. Grandin explains that children with ASD often develop fixations, such as a love of trains, penguins, or sporting teams, which can serve as opportunities for engaging in relationships with others in the faith community. Grandin states that some teachers make the mistake of trying to stamp out the fixation but, instead, should broaden and channel it into constructive activities (Grandin 2006, 105). In fact, the child’s fixations could serve as a bridge— a connection point—through which a relationship can be initiated and strengthened, and by which the child with ASD can discover purpose and participation in the congregation. A community where all are accepted and are invited to participate, regardless of strengths or perceived weaknesses, is expressed by Henri Nouwen in “Daybreak Newsbreak,” a newsletter of the L’Arche community located in Toronto, which sees residents of varying abilities living together in fellowship. [ Page ] 29 Nouwen writes, “We are not alone; beyond the differences that separate us, we share the one common humanity and thus belong to each other. The mystery of life is that we discover this human togetherness not when we are powerful and strong, but when we are vulnerable and weak” (Nouwen 2013, 1). Nouwen reflects upon his friend, Bill, a person some would describe as being vulnerable and weak; but, it was through Bill’s participation in their travels together that Nouwen discovered a renewed clarity and purpose in his speaking engagements. In one particularly poignant statement, Nouwen described how it dawned on him that most likely his speeches and lectures would soon be forgotten, but the partnership he shared with Bill— “doing it together”—would not easily be forgotten (Nouwen 1989, 101). Bill discovered a sense of purpose through his participation in community with Nouwen, which in turn assisted Nouwen in clarifying his own identity. This partnership also became an visible expression of who is invited to participate as valued and valuable members of God’s kingdom— the strong as well as the weak. Paul’s letter to the Corinthians reflects this idea, phrased in The Message, as God reveals to Paul, “My grace is enough; it’s all you need. My strength comes into its own in your weakness” (2 Corinthians 12:9 [MSG]). When the church extends welcome and acceptance, especially to the weak, it allows the strength of God to “come into its own,” as described by Paul, and offers the opportunity to re-examine the definitions and values of strength, weakness, and disability. In reflecting upon Stanley Hauerwas’ teachings regarding the theology of disability, Scottish theologian John Swinton states that, “Charity is not enough. What is [ Page ] 30 required is a radical change in our perspective. A change which leads us to participate fully in the paradigm shift that was initiated by the life, death, and resurrection of Jesus and which the church has been given the responsibility for embodying and living out” (Swinton 2004, 4). Swinton’s reflections challenge the church to re-examine the question, “what does God’s love look like?” (Swinton 2012, 260), specifically as expressed to and by a person with autism (Swinton 2012, 261). Mayberry relishes opportunities to reflect God’s love among her congregation and actively pursues possibilities to share this love with others. She explains, “I try to show God to people. I try to be positive, encouraging, helpful and kind. These are broad terms and it took me a while to match the things I was doing with the right words, but these words describe it all the best” (Mayberry 2010, 30). When we enter into a relationship with the child, especially the vulnerable child such as a child with ASD, we reflect the sentiment of Jesus himself who stated, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these” (Matthew 19:4). Our churches can often, intentionally and unintentionally, hinder Christ’s children from coming to him by establishing barriers in language, understanding, and attitudes. Courtney E. Taylor states in Welcoming People with Developmental Disabilities and Their Families: A Practical Guide for Congregations, “Often, the biggest barrier people with disabilities and their families encounter are not inaccessible stairs, but unwelcoming stares” (Taylor 2014, 4). When a congregation ensures that the stories of faith are shared in ways that are accessible and meaningful to children [ Page ] 31 with ASD, it creates an opportunity for these little ones to learn and integrate the tenets of the gospel, and then to live them out as active, purpose-filled members of the faith community. The image of Jesus welcoming children to him, as described in Matthew 19:13-15, serves as an illustration of how the church—as the hands and feet of Jesus—can welcome all children, including those with ASD, in a manner that accepts their exceptionalities and honours them as reflections of God himself. Jesus, the one who welcomes the tax collector, the lame, the blind, the leper, along with the fisherman and the tentmaker, also welcomes the child with ASD and invites all to participate fully as members of his body. It becomes the divine mandate of the local church to discover creative and meaningful ways for children with ASD to live out their purpose as Spirit-filled individuals, so they, too, can discover the welcoming presence of God through Jesus Christ, who loves them...just as they are. Exegesis of Matthew 19:13-15 In preparing to create a faith-based storybook geared for children with ASD, an exegesis of the scriptural text to be used—Matthew 19:13-15—is required. This passage illustrates Jesus’ desire to spend time with children, despite his disciples’ rebuke of those who brought the children to him, which can be an empowering message for children with ASD. Douglas R. A. Hare in his commentary Interpretation: Matthew, explains that at a literal level, this pericope is evidence of Jesus’ attitude toward children (Hare 1993, 224), “contrasting with the disciples’ traditional viewpoint, which accords children low status who are by no means permitted to participate fully in organized religion” (Hare 1993, 224). [ Page ] 32 Jesus’ insistence that the children not be hindered but instead be given full access to him demonstrates that children are of great value to God—just as valuable as adults (Hare 1993, 224), a viewpoint which is the aim of this faith-based storybook. According to Matthew Henry’s Concise Commentary, there is also a message of grace given to the caregivers and loved ones who brought the children to Jesus. He notes that those who brought their precious possessions to Jesus to have him lay his hands upon them and pray for them, “testified their respect to Christ, and the value they had for his favour and blessing” (Henry 1708). These parents and caregivers are, in fact, living out the directive of Deuteronomy 6 in which Moses instructs the people of Israel to share the tenets of faith with their children, so that “you, your children and their children after them may fear the Lord your God as long as you live” (Deut. 6:2). Archibald Thomas Robertson wrote that the disciples who tried to prevent the children from coming to Jesus likely felt that they were doing Jesus a kindness, but “how little they understood children and Jesus” (Robertson 1930, 156). “It is a tragedy to make children feel that they are in the way at home and at church. These men were the twelve apostles and yet had no vision of Christ’s love for little children. The new child world of today is due directly to Jesus” (Robertson 1930, 156). Although Robertson wrote these words decades ago, their sentiment applies to this research in creating a storybook message of welcome, hospitality, and acceptance for children with ASD in the presence of Jesus. [ Page ] 33 In Matthew’s passage, it is explained that the children were brought to Jesus to have him “lay hands on” as well as “pray for” them. An exploration of the meaning behind these two phrases is helpful in understanding the overall implication of the passage, especially in designing a contemporary story which will portray a similar sentiment. This section includes a study of the original Greek words used for “laying hands,” and “praying for.” According to the Mounce Concise Greek-English Dictionary of the New Testament, the phrase “place his hands on” is translated from the Greek word epitithemi in Matthew 19:13. This word is interpreted as “to put, place, or lay upon” but it also can be used to mean “to impose a name” with the implication of bestowing a blessing of grace and mercy. This last definition is significant in relation to crafting a story geared for children with ASD who discover the special nature of being named by Jesus. A person’s name and identity are intertwined in Jewish tradition, as portrayed in many instances throughout the Old and New Testaments. When God confirms his covenant with Abram, he also gives Abram a new name—Abraham—signifying his new identity (Genesis 17:5). Abraham’s grandson, Jacob, wrestles with God at a significant point in his life, resulting in God giving him the name Israel “because you have struggled with God and with men and have overcome” (Genesis 32:28). And in the New Testament, after experiencing a divine interaction with the risen Christ, Saul, who had been a persecutor of Christians, becomes one who dedicates the rest of his life to following Jesus. This transformation is signified by the changing of Saul’s name to Paul (Acts 13). [ Page ] 34 The act of bestowing a blessing as expressed through the word epitithemi is evident to this day in the traditional Friday evening Shabbat meal when Jewish parents bless their children, reciting the words of Numbers 6:24-26. The epitithemi described in Matthew 19:13, when retold in a contemporary setting with Jesus confirming the name and blessing the book’s main subject—a child with ASD—could bring a sense of purpose and acceptance to the child engaging with the book, signifying that their identities are in Christ, an act which defines them as God’s beloved children who have been created in his image and welcomed into his family. The word used for “pray” is derived from the Greek word proseuchomai. This is the same version of the word that Jesus uses when he instructs his disciples how to pray (Matthew 6:9), how to pray for their enemies and those who persecute them (Matthew 5:44), and when describing his own personal prayer time with God the Father (Matthew 14:23). The implication is that of an all- encompassing form of communication with God, that acknowledges the pray-er’s reliance on God to do things not possible, humanly speaking, such as praying for persecutors. There is also an intimate connotation to this word, especially as found in Matthew 14:23, as Jesus—God incarnate—communicates with God the Father in a time and space that had been set apart for such a purpose. The children’s carers brought their wee ones to Jesus in order that he would share this empowering and intimacy-seeking act with them, indicating the special nature of the relationship between Christ and his little ones. He empowers them and invites them into an intimate relationship with him—all through prayer, proseuchomai. [ Page ] 35 It is interesting that this passage appears in Matthew’s gospel after Christ’s teachings about divorce—addressing the Pharisee’s questions, and teaching a more dedicated and faithful interpretation of marriage (Matthew 19:9)—and before Jesus confronts the question from the rich young man, describing again a more dedicated and faithful interpretation of discipleship (Matthew 19:24). In between these two challenging pericopes, Jesus welcomes children to him, despite the disciples’ rebuke, and states that “the kingdom of heaven belongs to such as these” (Matthew 19:14b). The Expositor’s Bible Commentary observes that Jesus does not want the little children to be prevented from coming to him “not because the kingdom of heaven belongs to them, but because the kingdom of heaven belongs to those like them” (Gaebelein 1984, 420). By placing this story between teachings about faithful marriage and faithful discipleship, the implication could be made that faith is best exemplified through those who approach Jesus like a child—for this project’s purposes, a child with ASD—supporting the storybook’s premise that all children are valued and accepted into God’s family. The story of Jesus welcoming little children to come to him is also told in the gospels of Mark (10:13-16) and Luke (18:15-17). Luke precedes this story with the parable of the Pharisee and the tax collector, placing this description about children in the context of proper humility (Green et al 1992, 627). Luke also changes the Greek word for “children” to a word denoting “infants” or “babies” which sharpens Jesus’ teaching that those who seek God’s kingdom must come as a child, or “as a helpless baby receives its nourishment” (Green et al 1992, 627). [ Page ] 36 Mark’s placement is similar to that of Matthew’s, locating this story between Jesus’ teachings about divorce and his instruction to the rich young man about discipleship. Mark includes the observation that Jesus was indignant in response to the disciples’ rebuke of those who brought the children to him. Despite the disciples’ close relationship with Jesus, they still exhibited a lack of understanding of Christ’s ways and teachings, which, at least according to Mark’s account, caused Jesus to be indignant with them at times. The church, too, must cause Christ to be indignant at times, especially when it puts up barriers which may prevent children—such as children with ASD—from receiving a touch and a prayer from Jesus. [ Page ] 37 CHAPTER 3: PRECEDENT SOCIAL SCIENCE LITERATURE AND CASES Living Faith Community Presbyterian Church has implemented modified physical space to accommodate children with ASD through the construction of a sensory room; however, the objective of this research is to look beyond appropriate space and address the importance of effective communication for sharing faith in the church that can also be implemented by parents in the home. This communication tool is a storybook—geared to primary school-age children—which addresses the unique communication exceptionalities using language, content, and formatting appropriate to a child with ASD. This section outlines the findings of a review of social science and psychological literature to assist in the development of the storybook. The first section is an examination of the specific needs and challenges facing children with ASD with a focus on sensory integration disorder and anxiety. This information was valuable in the development of the content of the resulting storybook. The second subdivision is an examination of communication exceptionalities—language, font, style, and the use of illustrations—which were considered in determining the appropriate formatting of the book to enhance a child’s ability to engage with and interpret the book’s content. [ Page ] 38 Storybook Content: Needs and Challenges Facing the Child with ASD An examination of the needs and challenges faced by children with ASD was undertaken to determine which issues to address in the content of the resulting storybook. This section presents an overview of autism in general, along with information about sensory integration disorder and general anxiety disorder which are often experienced by those with ASD. Autism Defined According to the Center for Disease Control (CDC), “Autism spectrum disorder (ASD) is a lifelong developmental disability defined by diagnostic criteria that include deficits in social communication and social interaction and restricted, repetitive patterns of behavior, interests, or activities” (Baio 2014, 2). Children with ASD exhibit common characteristics which may be lived out in unique ways. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) states that the commonalities among children with ASD include sensory integration deficits, social awkwardness, learning and development disabilities, preoccupation with objects or topics, along with rituals and resistance to change (Carpenter 2013, 1-5). Despite these commonalities, there is a prevailing sentiment among the ASD community that “if you’ve seen one person with autism you’ve seen one person with autism” (Mayberry 2010, 15). In other words, each person exhibits the characteristics of ASD in his/her own unique way. In fact, the child with ASD may also be dealing with multiple challenges; co- occurrence of several disabilities is the norm, not the exception with ASD [ Page ] 39 (Kutscher 2014, introduction ii). According to Medical Comorbidities in Autism Spectrum Disorder, a publication intended for health care professionals and policy makers, “medical comorbidities are much more prevalent in people with ASD than in the general population” (Treating Autism 2014, 21). In accepting the mandate to share the good news of Jesus, faith communities face the challenge of responding to the unique exceptionalities of children with ASD, especially as incidences of autism are on the rise. According to the CDC, “the global prevalence of autism has increased twentyfold to thirtyfold since the earliest epidemiologic studies were conducted in the late 1960s and early 1970s ... the reason for the increase is likely attributable to factors such as improved awareness and recognition and changes in diagnostic practice or service availability” (Baio 2014, 2). The National Epidemiologic Database for the Study of Autism in Canada (NEDSAC) reports a 170% increase in the instances of ASD diagnoses in children ages two to four in south-eastern Ontario from 2003 to 2010 (Ouellette-Kuntz 2012, 15). Moreover, information gathered by the CDC and outlined in the National Health Statistics Report in 2014, indicates that 75% of children with ASD are boys (Zablosky 2015, 4), with 3.29% of males ages three to seventeen having the disorder compared to 1.15% of girls (Zablosky 2015, 8). This definition of autism, including the trends in statistics, informed decisions regarding the content of the faith-based storybook and assisted in defining the needs to be addressed, specifically the challenges of sensory integration disorder and anxiety as exhibited in the child with ASD. [ Page ] 40 Sensory Integration Disorder The brain receives sensory input continually, collecting information, integrating and evaluating it, then executing an appropriate response (Kutscher 2014, 183). Most of this sensory processing happens subconsciously without the subject even being aware of what is taking place. Sensory input is received and an appropriate response is elicited. For example, the sensation of a gentle pat on the back typically evokes the response of one calmly turning around to see who it is. For the child with ASD, sensory input is often integrated incorrectly, resulting in an inappropriate response. A child with ASD can exhibit two forms of sensory integration disorder: sensory hypersensitivity, when the brain takes in too much information, or hyposensitivity, when the brain doesn’t integrate enough sensation (Kutscher 2014, 185). For the child with a hypersensitive system, the gentle pat on the back can be painful, eliciting a response of alarm, fear, or confusion. A hyposensitive system may result in a child ignoring the initiator, or seeking out extreme sensory stimuli, such as head-banging or twirling, in order to evoke a response (Kutscher 2014, 186). DSM-5 addresses sensory integration disorder as a defining aspect of a diagnosis of autism, describing it as “hyper- or hypo- reactivity to sensory input or unusual interest in sensory aspects of the environment (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects)” (Carpenter 2013, 5). Research conducted by Ben- Sasson, et al, concluded that “persons with ASD show elevated sensory modulation symptoms across ages and spectrum of severity;” however, the [ Page ] 41 highest difference in sensory symptoms was observed in children aged six to nine (Ben-Sasson 2009, 11). The possible explanation for this specific age-range is that this was the time frame in which children were entering the school system where the environment was more complex and increased independence was required (Ben-Sasson 2009, 8-9). Sensory integration disorder among the child in this age- range may manifest itself in behaviours which can be difficult to understand, such as the inability to tolerate seat belts, resisting haircuts, or gagging at common household smells (Autism Ontario 2015, 19-20). Autism advocate, Temple Grandin, explains that when she was a child, she wanted to experience the good feeling of being hugged but hated being touched due to her sensory integration disorder (Grandin 2006, 58). She would wrap herself up in blankets or lie under a mattress until, in her teen years, she designed the “squeeze machine”—a device patterned after the cattle squeeze chute she had seen at her aunt’s ranch. This device allowed Grandin to receive the positive sensory stimulation of pressure without having to endure human touch (Grandin 2006, 59). Grandin explains that for children with ASD, sensory input from noise, light, and touch can be problematic. Noises can cause physical pain, it can be difficult to distinguish between various sounds, lighting can be distracting resulting in headaches, and clothing can feel too rough against the skin (Grandin 2006, 65-74). Kutscher adds that this overwhelming sensory stimuli can result in inattention, inappropriate behaviour, and anxiety within the child with ASD (Kutscher 2014, 185). [ Page ] 42 Danny Raede and Hayden Mears are two young men with Asperger’s Syndrome (also referred to as High Functioning Autism) and are co-founders of the Asperger Experts blog and online support network. On their website, Mears describes the term “defense mode,” which can be debilitating for a child with ASD, as, The disconnected, disoriented state of living brought about by an overactive fight-or-flight response that is triggered by perceived threats and results in a forfeiture of higher human functioning. Because people with Asperger’s struggle with sensory overstimulation, they tend to process EVERYTHING as a threat because everything is uncomfortable to them. (Mears n/d, author’s emphasis). Defense Mode, as defined by Mears, results when the child either shuts down or acts out inappropriately as a response to sensory overload. In her book Fringe: My Life as a Spirit-Filled Christian with Asperger’s Syndrome, author Stephanie A. Mayberry explains, “I am sensory defensive. This means that my brain takes in all sensory input (to which I am sensitive—sound is the worst) and is unable to filter out unimportant messages from the important ones. In short, I hear everything. It is very distracting and stressful because it puts my entire system in a hyper-alert state” (Mayberry 2010, 22). Alenka Klemenc is a clinical psychologist who is raising a child with ASD. She explains that when a child with ASD has been exposed to too much sensory input, s/he behaves in ways which are difficult to understand, prompting responses from their parents, teachers, and caregivers that are confusing to the child (Klemenc 2013, 26-27). For example, a child who has received too much sensory input may respond by lashing out in anger or running away to hide. The parent or teacher may then react in anger or frustration, even punishing the child, [ Page ] 43 which then causes him/her to be even more confused and conflicted (Klemenc 2013, 27). This recurring state of confusion and confliction caused by sensory integration disorder can result in an increased occurrence of general anxiety disorder (GAD) among children with ASD (Kutscher 2014, 172), which will be examined in this next section. Anxiety in the Child with ASD According to the current theory of GAD as outlined by Martin L. Kutscher, “there is an imbalance in the loop between the brain’s cortex and primitive centers for sensory input and emotion” (Kutscher 2014, 172). In The Autistic Brain, Grandin provides a detailed analysis of a brain with ASD (using MRIs of her own brain in many examples) to illustrate the biological reasons why children with ASD have difficulty maintaining eye contact, missing common social cues, and exhibiting higher-than-average visual memory, resulting in increased anxiety (Grandin 2013, 35-36). As previously mentioned, noted autism expert, Tony Attwood, states that “Autism is anxiety looking for a target. Autism and anxiety go hand-in-hand” (Evans 2006). According to the American Psychological Association, anxiety manifests itself in “feelings of tension, worried thoughts and physical changes like increased blood pressure, with sufferers having recurring intrusive thoughts or concerns causing them to avoid certain situations out of worry” (APA 2016). Research conducted by Leicestershire and Rutland Healthcare NHS Trust in 2001, and reported in the journal Autism, confirms higher than average rates of anxiety among children with ASD. A group of children with high functioning [ Page ] 44 autism were compared with control groups consisting of children with specific language impairment (SLI) and typically developing children. The research concluded that children with autism were found to be most anxious, specifically suffering with general anxiety disorder, overanxious disorder, separation anxiety, and simple phobia (Gillot 2001, 283). Anxiety among children with ASD has also been studied by Azadeh Kushki, an engineer in the Autism Research Centre at the Holland Bloorview Kids Rehabilitation Hospital in Toronto. In an interview with CTV News aired in 2014, Kushki stated that “up to 40% of children with ASD have at least one anxiety disorder and up to 80% have experienced some impairing symptoms of anxiety” (Kushki 2014). Kushki has actually devised an anxiety meter which records children’s bio-medical feedback to help predict when debilitating anxiety responses may occur. The anxiety meter app can detect various states of anxiety in children with ASD by measuring the heart rate and visually providing information to children through a mobile phone or tablet, acknowledging that children with ASD may have difficulty recognising the symptoms of anxiety on their own (CAHO 2016). Tony Attwood explains that children with ASD, “do not know intuitively how to play or interact with their peers, and can be subject to ridicule, teasing, and rejection—leading to damaged self-esteem” (Attwood 2014, 142). Children with ASD also have difficulty understanding emotions and responses in their peers, which add to anxiety. “Theory of Mind” (ToM) is a term that describes a person’s intuitive ability to comprehend and appreciate the opinions, attitudes, and thoughts of others. In her book Theory of Mind and the Triad of Perspectives on [ Page ] 45 Autism and Asperger Syndrome: A View from the Bridge, author Olga Bogdashina purports that children with ASD lack this intuitive ability. She states that the term ‘mind-blind’ has been used to describe their lack of understanding of thoughts, feelings, and intentions of those around them (Bogdashina 2005, 12). This lack of ability to read intuitively other people’s emotions and responses can increase anxiety and confusion. Klemenc warns that, “just as a colour-blind person slowly learns to distinguish between different shades of gray, [the child with ASD] has to learn, slowly, very slowly, to distinguish between the different expressions on people’s faces and to try to understand what they mean” (Klemenc 2013, 54). She adds that the child with ASD may imitate another’s facial expressions or actions in a misguided attempt to engage socially, or s/he may dominate the conversation while talking about concrete subjects, such as numbers, to avoid emotional situations (Klemenc 2013, 58). In light of this literature review, the content of this faith-based storybook addresses issues of sensory integration disorder, fixations, and anxiety while communicating the message of Jesus’ loving acceptance found in Matthew 19:13- 15. Hayden Mears of Asperger Experts outlines the unconditional love he received from his mother as the key for him escaping from “defense mode” previously described as an overwhelming fight or flight response to sensory input. On his blog he states, [My mother] let her love for me shine through whatever she did and created a safe, nurturing environment for me so I could go follow my dreams and finally succeed without the pointless struggles and stress. That meant sitting down and reading with me every night. It meant taking me out to dinner and connecting with me as another human being. It meant comforting me when I was in pain. (Mears n/d) [ Page ] 46 The importance of sitting down and spending time reading with a loved one is reflected in Mears’ comment which is also verified by a 2012 Australian study indicating that “parental reading to children increases the child’s reading and other cognitive skills at least up to the age of 10-11. This is an early-life intervention that seems to be beneficial for the rest of their lives” (Kalb and van Ours 2012). Furthermore, a study of 115 four- to -five-year old children revealed that shared parent-child book reading during the children’s preschool years leads to higher reading achievement in elementary school, as well as greater enthusiasm for reading and learning, without differentiating whether that parent was the mother or father (Burgess 2002, 421). An earlier study concluded that one-to-one story sharing with teachers in a school setting also had direct positive literacy outcomes for the primary learner (Morrow 1988, 89). The results of these studies infer that this storybook could be a means of connection for a parent or teacher and the child with ASD while sharing the concept of unconditional love made possible through a relationship with Jesus Christ. Storybook Format: Communication Exceptionalities, Language, Font, Illustrations How information is presented is just as important as what is presented when it comes to assisting the child with ASD in comprehension. In this section, the unique communication exceptionalities present in children with ASD will be examined to discover the best format for the resulting storybook. [ Page ] 47 Communication Exceptionalities Tony Attwood explains that children with ASD usually have an unusual and uneven learning profile, as well as an a-typical learning style, which can be challenging for teachers, parents, and other care providers (Attwood 2014, 161). The child may score very well in one area of study, but struggle in other aspects of his/her education. The Ontario Ministry of Education’s manual Effective Educational Practices for Students with Autism Spectrum Disorders states that, “The communication skills of students with ASD vary significantly. Communication challenges are central to ASD, however, and many students with ASD have difficulty communicating with others in a meaningful way or using functional communication skills” (Ministry of Education 2007, 79). Research led by Martina Barnevik-Olsson of Gothenburg University, Stockholm concluded that more than 90% of children with a preschool diagnosis of ASD have remaining neuropsychiatric problems, including learning disabilities and Developmental Coordination Disorder at age eleven, despite early intervention (Barnevik, et all 2016, abstract). Children with ASD tend to process verbal and written information more slowly than the neuro-typical learner, yet they can be very adept visual learners with images assisting in the processing and understanding of information (Ministry of Education 2007, 42). Tony Attwood explains that children with ASD may be described as “visualizers” or “verbalizers” (Attwood 2014, 161). For the visualizer, learning may be facilitated by silent demonstrations, films, and diagrams, while the verbalizer benefits from reading about the topic rather than [ Page ] 48 participating in conversational or group-based activities (Attwood 2014, 162). The storybook resulting from this research is aimed at the visualizer as the story is read to the child with ASD and s/he follows along with the illustrations, but it is conceivable that the content could be read aloud by the child, to satisfy the learning needs of the verbalizer. Language Some students develop highly sophisticated vocabulary, although they may have difficulty using language in a way that is considered socially appropriate. Others are non-verbal and need to use an alternative form of communication, such as visuals or gestures, to share information with others (Ministry of Education 2007, 79). Educators recommend using a variety of methods to communicate with and elicit communication from a child with ASD, adapting the method to suit the individual learner (Ministry of Education 2007, 81). Temple Grandin, in her book Thinking in Pictures explains “I think in pictures. Words are like a second language to me. I translate both spoken and written words into full-colour movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his [sic] words are instantly translated into pictures” (Grandin 2006, 3). Ann Memmott acknowledges that she also thinks visually rather than with words and advises that care must be taken about the language used to share the tenets of the Christian faith with the child with ASD. Memmott uses the example of “thou art in heaven” resulting in her visualizing someone doing artwork in heaven (Memmott 2013, 81). She recommends avoiding jargon, which is easily understood by those who are in the [ Page ] 49 know but can be meaningless or confusing to a child with ASD (Memmott 2013, 48). As an example, Memmott describes the difficulties a child with ASD would have when the worship leader uses jargon such as “we’re going to move into a time of prayer” with the implication that the congregation will physically change space. She instead suggests the simplified and direct statement, “let’s talk to God” (Phelps-Jones 2013, 49). Memmott advises educators to use ordinary, everyday words as much as possible, which will benefit not only the child with ASD, but others in the congregation as well (Memmott 2013, 48). Educator Carol Gray is recognized in the field of education for children with ASD and has developed the strategy of Social Stories™ as a method of communicating that is relevant and makes sense. This form of communication uses cues and responses for specific situations, allowing the child to predict and engage in the information being imparted (Kutscher 2014, 150). Social Stories™ use positive language and a constructive approach with suggestions as to what to do, rather than what not to do. Gray has derived a formula of including descriptive, perspective, cooperative, directive, affirmative, and control sentences to ensure that the text describes more than directs (Attwood 2014, 151). To summarize the Social Stories™ concept: • Descriptive sentences provide factual information or statements. • Perspective sentences explain a person’s perception of the situation, describing thoughts, emotions, beliefs, opinions, motivation and knowledge, intended to improve ToM. • Cooperative sentences identify who can be of assistance, providing help in the situation, thus reducing anxiety and stress. • Directive sentences suggest an appropriate response or choice in the situation. [ Page ] 50 • Affirmative sentences explain a commonly shared value, opinion, or rule. • Control sentences are written by the child in conjunction with the parent/teacher to identify a personal strategy (Kutscher 2014, 151). A study on the effectiveness of Social Stories™ was conducted in 2006 and is outlined in the Journal of Autism and Developmental Disorders. Researchers Georgian Reinhout and Mark Carter concluded that the effectiveness of Social Stories™ alone needs more research but discovered that the inclusion of illustrations and symbols increases the efficacy of the intervention (Reinhout and Carter 2006, 465). This study also reports that since this intervention was first developed, the suggested format for a Social Story™ has become more sophisticated. Gray now describes four basic sentence types: descriptive, directive, perspective and affirmative and suggests a ratio of use to improve understanding and efficiency (Reinhout and Carter 2006, 446). Gray suggests a basic Social Story™ has a ratio of two to five descriptive, perspective and/or affirmative sentences for every directive sentence and recommends that control and cooperative sentences be used by the child with ASD to identify how to respond to the story (Reinhout and Carter 2006, 446). A meta-analysis of Social Stories™ published in the Journal of Autism and Development Disorders in 2010 indicates that while Social Stories™ have been used to address a number of behaviours, the two main intervention objectives were reduction of inappropriate behaviours and improvements in social skills (Kokina and Kearn 2010, 824). Yet another study on the effectiveness of Social Stories™ discovered that higher levels of success were exhibited when the stories were shared by mothers with their child/ren with ASD (Acar et al 2016, [ Page ] 51 809), implying the positive role of a loving figure, which could conceivably be extended to include a Sunday School teacher or other caregiver, in the effectiveness of sharing stories. In light of the information obtained from these studies, the guidelines regarding the use of Social Stories™ have been employed in the resulting storybook, which includes instructions encouraging parents and teachers to engage with their children in discussing how to respond appropriately to the situations outlined in the book. This same formula could then be translated into daily life, providing the child with ASD a coping tool with the purpose of alleviating anxiety and improving ToM. Font and Illustrations Effective communication relies on the ability to know and understand how symbols work; symbols refer to objects and events and can be used flexibly to represent them (Allen and Lewis 2014, 1). The child with ASD often exhibits, “communication impairment related to divergent pathways towards symbolic understanding, and also to differences in early interpersonal interactions” (Allen and Lewis 2014, 1). Because of this difficulty in understanding symbols and illustrations, Allen and Lewis’s research indicates that highly iconic and colourful symbols and pictures are more effective when they relate specifically to the words on the same page, allowing the child with ASD to compare the illustration to the written word (Allen and Lewis 2014, 102). Carol Gray, the originator of Social Stories™, has also established a communication technique called comic strip conversations, employing simple illustrations with specific font colours to [ Page ] 52 enhance understanding in the child with ASD. The National Autistic Society explains the effectiveness of comic strip conversations: “Seeing the different elements of a conversation presented visually, some of the more abstract aspects of social communication (such as recognising the feelings and intentions of others) are made more ‘concrete’ and are therefore easier to understand” (autism.org 2016). Gray adds that, “comic book conversations regard the thoughts and feeling of others as holding equal importance to spoken words and actions in an interaction” (Gray 1994, 2), with colours used to identify the feelings behind thoughts and spoken words. Gray has discovered that he following colours are equated to specific emotions within the child with ASD: • Green equals good ideas and happy thoughts. • Red equates with bad ideas and anger. • Blue denotes sadness or sorrow. • Yellow is equated with fear. • Black denotes facts and truth. • Orange represents questions. • Brown is equated with comfortable and cozy emotions. • Purple denotes pride. • A combination of colours represents confusion (autism.org 2016). DSM-5, the diagnostic and statistical manual of mental disorders, stipulates that children on the spectrum have difficulty understanding facial expressions and often avoid making eye contact (Carpenter 2013, 2). This exceptionality among children with ASD was integrated in a 2014 study led by Catarina Silva from the University of Lisbon, investigating how children with autism respond to real life photographs in comparison with cartoon drawings. The children were shown a variety of photographs depicting actual figures and people, as well as cartoon representations, and their positive or negative responses were [ Page ] 53 observed. The study confirmed that children with ASD do not process human and cartoon stimuli in the same way, and in fact responded more positively to cartoon images and avoided maintaining eye contact with the real-life photographs (Silva et al 2014, 22). Moreover, animated and artificial stimuli also resulted in positive responses (Silva et al 2015, 22). Christian Educator and mother of two boys with autism, Kathy Labosh, has created specialized curriculum for children with ASD which employs simple, direct illustrations. In her book The Child with Autism Learns about Faith she indicates that, “Children with autism have difficulty processing information ... typical children’s books have many intricate pictures, fanciful characters, and rich language meant to stimulate a child’s imagination. This works well for typical children, but spells trouble for the child with autism” (Labosh 2011, 7). Tony Attwood explains that children with ASD can also have a condition called alexithymia, which translates into difficulty identifying the specific word that describes a particular feeling (Kutscher 2014, 157). In response, Attwood suggests the use of affective education in assisting the child to make connections between the appropriate vocabulary and the corresponding emotion leading to the fitting behaviour. Affective education works on the connection between thoughts, feelings, and behaviour, while teaching how to conceptualize emotions (Attwood 2014, 157). Memmott purports that “eight out of ten of us think visually rather than in words, which means that we try to visualise what a word looks like or what someone would be doing” (Phelps-Jones 2013, 78). With this in mind, this project’s faith-based storybook employs simple, cartoon-themed subjects [ Page ] 54 displaying facial expressions that connect directly with the content on the corresponding page. In this way, children with ASD may better be able to connect the emotion displayed by the illustrated subject with the vocabulary used in the corresponding text. As earlier indicated, statistics demonstrate that ASD occurs more frequently in boys than girls, with boys making up 75% of the ASD population (Zablostky 2015, 4). In response to the data obtained from this social science and psychological literature review, the resulting faith-based storybook includes the following elements: • Simple cartoon-type characters and illustrations • The Social Stories™ formatting technique to structure the content • Coloured, simple font following the comic book conversation’s guidelines • A primary school-age boy as the main character • The story is based in contemporary times to allow for greater relatability for the child with ASD. • The issues of sensory integration disorder, fixations, and anxiety are addressed with a message of acceptance and worth based on the words of Jesus outlined in Matthew 19:13-15. It is hoped that this storybook will become a tool used by parents at home and teachers in the church to share the story of Jesus’ welcome and acceptance in a format that allows this information to be integrated and understood by a child with ASD. [ Page ] 55 CHAPTER 4: METHODOLOGY AND PROJECT The purpose of this research project is to create a storybook that shares the message of Jesus’ love and acceptance using a method of communication that is relevant to a primary school-age child with ASD. The formation of the book— including its content and format—was devised using the methodology of action research supplemented by feedback and data obtained from three different yet complementary sources: a parent focus group, expert review, and professional feedback. This chapter outlines the scope, methodology, sources of data and feedback, along with a description of the storybook creation and its subsequent completion. Scope While the resulting storybook could be used to assist all children in gaining a better understanding of the premise of Matthew 19:15-17, the focus of this research project was limited to families attending Living Faith Community Presbyterian Church; specifically, families with children who have a diagnosis of, or display traits of, Autism Spectrum Disorder. The storybook was implemented in the home, Sunday school classroom, and in Living Faith’s sensory room. While the use of the storybook could be closely monitored in the Sunday school [ Page ] 56 classroom and in the sensory room, its use in the home was unmonitored. Parents could use the storybook to interact with their children as they wished, such as using it as a bedtime story, reading to their children as part of their breakfast routine, or allowing their children to engage with the book independently. Feedback regarding the storybook’s use in the home was obtained from the parents so it is understood that the data has been impacted by the parents’ perceptions and interpretations. Experts in the fields of autism and children’s literature were interviewed to assist in the formation of the content and format of the storybook. Because the book has been designed specifically with the children of Living Faith in mind, the experts interviewed for this project work within the village of Baxter and immediate community and interact with primary school-age children. Similarly, professional feedback was obtained from those working directly with the children of Living Faith CPC. Methodology The methodology used to obtain the information for the creation of the storybook and its subsequent revision was action research supplemented by expert review and professional feedback. Ernest Stringer describes action research as a cycle consisting of “look, think, act” followed by reflection (Stringer 2007, 8-9). Moreover, it allows time to step back and view the research from the “balcony” in order to obtain a broader perspective (Chapman 2015, class notes). Spending time alternating between the ‘dance floor’ and the ‘balcony,’ action and reflection, [ Page ] 57 ensures that the data is being analysed truthfully as it becomes available, and not according to preconceived expectations. “Knowing-in-action is tacit and opens up outcomes that fall within the boundaries of what you have learned to treat as normal. Reflection-in- action occurs when you are in the middle of an action, and you ask questions about what you are doing and what is happening around you. The outcome is immediate, as it leads to an on-the-spot adjustment of your thinking and of your action” (Cochland and Brannick 2014, 22). The outcome evolves as the research takes place, as opposed to establishing a hypothesis and then engaging in research to defend it (Bell 2005, 18). This cycle of planning, constructing, acting, and reflecting was implemented in this research project in three distinct-yet reciprocal-arenas. Planning the first draft of the storybook took place following the literature review and in conjunction with data obtained from the parent focus group and the preliminary interviews with the expert reviewers and those providing professional feedback. The data from these three arenas was compiled and analysed, resulting in the construction of the content and format of the storybook’s first draft. The draft was then put into action after being given to the participants of the parent focus group who were provided with instructions as to how to share the book with their children. Concurrently, the draft was also given to the expert reviewers and professionals at Living Faith CPC who then reviewed the book and offered feedback. The reflection piece of the action research process took place when feedback was received from these three groups. Their responses were analysed, interpreted, reflected upon, and prayed over with time spent simply pondering how their feedback intersected with the data obtained from the literature review. [ Page ] 58 Sources of Data and Feedback The three previously-mentioned unique yet complementary sources of data for this research project will be further described in this section. They include the parent focus group, experts in the fields of ASD and children’s literature, along with professionals who work alongside the children at Living Faith CPC. Parent Focus Group In July of 2016, a parent focus group was established and gathered to hear details about the action research project and provide information to assist in the creation of the storybook. Parents were asked to describe the unique challenges and joys of raising their child/children with ASD. While the distinct nature and personality of each child was noted, there were a number of similarities in behaviours and challenges that were observed (and are recorded in Chapter Five) which assisted in the development of the storybook’s content and format. Based on the data obtained from the meeting of the parent focus group, the first draft of the storybook was completed in the spring of 2017 and distributed individually to parents of the focus group. The parents were given verbal and written instructions describing a variety of ways to interact with their children and the storybook, such as using it as part of the child’s bedtime routine, reading the story before school in the morning, or providing opportunities for the child to engage with the storybook independently. The parents were requested to observe their child’s responses, paying particular attention to conversations and perceived attitudes about Jesus, faith, and disabilities, and to record and report their observations via email by the end of summer 2017. I decided that reporting via [ Page ] 59 email as opposed to in-person could allow for more honest and genuine feedback, as parents would not be as intimidated or influenced to be overly kind or generous in their responses, acknowledging “how action researchers hold their researcher and organizational action roles” (Cochland & Brannick 2014, 157). The feedback obtained from the parents was used to complete the final version of the storybook. Time was spent reflecting upon the parents’ feedback and gauging which information would be used to update the storybook. Some information obtained from the parents did not correspond with the data obtained from the experts, professionals, or the literature, so not all parental feedback resulted in changes to the storybook. Expert Review Joan Gullen is a Communications Specialist who works with Speech Language Pathologists in providing communication therapy to primary school-age children with ASD and offering resources to their families. Gullen has worked in a hospital setting and now provides services through a private practice. She is versed in and has implemented the Social Stories™ and comic strip conversations communication strategies. Gullen was interviewed in the autumn of 2016 to provide data regarding the unique communication challenges of children with ASD and how those challenges can be addressed using specific communication techniques. This information was used to assist in the formatting of the storybook, with particular attention to font style, illustration techniques, and word usage. In the spring of 2017, Gullen was interviewed a second time and was given a copy of the first draft of the storybook. After reviewing the draft for a few weeks, she was [ Page ] 60 interviewed a third time whereby she provided her professional feedback in written form. This data was integrated to assist in the design of the final version of the storybook. In the autumn of 2016, special education resource teacher (SERT) Susan Collingbourne was interviewed to obtain information about the specific learning and communication challenges of children with ASD. Collingbourne works directly with students in the primary and junior departments at Baxter Public School, many of whom have ASD, and is versed in the Social Stories™ and comic strip conversations communication methods. The information obtained from this initial interview was used to form the content of the storybook. Upon the completion of the first draft in the spring of 2017, Collingbourne was interviewed a second time and asked for her feedback. After spending a few weeks reviewing the draft, Collingbourne provided her responses in written form. This information was used to complete the final version of the storybook. Children’s author, Carolyn Morris, who is also a member of Living Faith CPC, was interviewed in the autumn of 2016. Morris provided information regarding the unique challenges in writing for the young reader and offered advice in the areas of inspiration, scheduling, communicating with publishers and printing companies, and promotion. While this data was not specific to children with ASD, it was helpful in the process of writing, illustrating, and printing. Morris also spent seventeen years as a kindergarten teacher at a Christian school and was able to review the first draft of the storybook from her perspective as an [ Page ] 61 author and educator. Morris’ feedback, obtained in the spring of 2017, was used in the creation of the final version of the storybook. Volumes Printing Company in Kitchener, Ontario was contacted to obtain information about options regarding the storybook’s size, binding, paper selections, and formatting, including the various options in pricing. The printing options available at Staples were also considered. This data was helpful in deciding upon the storybook’s format—specifically the use of flip-up panels, size, and cover options. Professional Feedback Lisa Sawden serves as the Children’s Ministry Director at Living Faith and oversees “The Bridge” Children’s Ministry, which includes the sensory room. Sawden also is a primary teacher with the Simcoe Muskoka Catholic School Board who is on leave to be home with her young children. Sawden was interviewed in the autumn of 2016 and provided information regarding the unique challenges of children with ASD as observed in the Living Faith classroom and sensory room. This data was used in the creation of the storybook’s draft. In the spring of 2017, Sawden implemented the draft version of the storybook in the classroom and sensory room for several weeks and provided her feedback and observations in September 2017. This information was implemented in the creation of the final version of the storybook. Nancy Gallant is the Family Ministries Director at Living Faith, and one of her ministry tasks is overseeing the “Holy Moly” After School Club, which also utilizes the sensory room. Gallant’s ministry involves interaction with [ Page ] 62 children and youth from Junior Kindergarten to High School, including those who have been identified with ASD. Gallant was interviewed in the autumn of 2016 to provide information regarding the challenges and joys she has observed when engaging with children with ASD. Gallant was given a copy of the draft of the storybook in the spring of 2017 but did not implement the storybook in her ministry. She provided her own personal feedback and observations. Ethical Considerations The details of the data and observations obtained from the parents focus group, expert review, and professional feedback are outlined in Chapter Five. To ensure confidentiality and trust, all written data and observations were kept offsite in a locked location while all digital data was contained to a password protected laptop, password protected online storage site, and data sticks which were also kept in a locked location. Codes were used in analysing the data to protect the participants’ identity; however, due to the small scale of this project and the intimacy of the research setting, participants were warned that complete anonymity was unlikely. All participants received a letter outlining the nature of this research and signed permission forms indicating their understanding and willingness to participate. It is understood that ethical risks are increased when research involves young children and those deemed vulnerable. With this in mind, throughout the research period there was no interaction between myself in the role as researcher and the children involved in this study. I serve as the pastor for these children and restricted my interaction with them to my ministerial role. Data for the research [ Page ] 63 project was never obtained directly from the children but was gathered solely from the adults who participated in the parent focus group along with the expert reviewers and professional workers at Living Faith CPC. This study conformed with all requirements of Canadian ethical guidelines as outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and the Tyndale Research Ethics Policy Manual and the research project was approved by the Tyndale Research Ethics Board on June 11, 2016. Storybook Creation and Subsequent Completion Data was collected from all sources—parent focus group, expert review, and professional feedback—and was compiled and analysed. Similarities were discovered concerning the challenges facing children with ASD, along with their joys and preferred activities. These similarities were considered when devising the theme and focus of the storybook with the acknowledgement that these observations and characteristics are specific to this particular research group at Living Faith and may differ in other settings. The information obtained from the socio-psychological literature review, along with the data retrieved from the expert review and professional feedback, assisted in devising the format for the storybook; specifically, the implementation of the Social Stories™ and comic strip conversations communication methods. The style of illustrations for the storybook was based on the social science research, along with anecdotal feedback from the parent focus group. The illustrator, my husband John Malnick, familiarised himself with Chapter Three of this thesis and shared his own thoughts and ideas regarding his abilities and how [ Page ] 64 they corresponded with the research data. Some changes were made—specifically regarding facial expressions and colour choices—based on the feedback from the parent focus group and expert review. The length of the storybook, its cover and paper options, and the inclusion of flip-up panels were adjusted based on information from the parent focus group and the two printing companies that were consulted. Once the first draft of the storybook was complete, copies were given to the members of the expert panel and those providing professional feedback. They were invited to engage with the draft storybook for at least two weeks and then were re-interviewed at which time they provided their opinions and suggestions for change. The members of the parent focus group were approached individually and given a draft copy of the storybook with instructions and suggestions as to how to implement the storybook with their children in their home during the following month. The parents were then invited to provide their feedback and opinions by email in the hopes that this format would be less intimidating and would illicit more honest responses than would be obtained by meeting face-to- face. The parents were asked to describe how their children engaged with the storybook, including any comments they observed or any conversation that ensued from the book, and to provide any suggestions for change. The data from these emails was compiled noting similarities, repeated themes, and valid suggestions for revising the storybook. All feedback was considered in the creation of the final version of the book. [ Page ] 65 Summary In this chapter, the scope, methodology, and data collection methods were discussed, along with their implications for the formation of the resulting storybook. In the following chapter, the specific findings and their interpretations, will be outlined along with explanations as to how they affected the final version of this research’s storybook. [ Page ] 66 CHAPTER 5: RESEARCH FINDINGS AND INTERPRETATION The prior chapter outlined the research method used in this project and implications for creating the resulting storybook for primary school-age children with ASD based on data from expert review, professional feedback, and opinions from the parent focus group. This chapter will provide details as to how the research findings were interpreted to create the first draft of the storybook, followed by how the draft was adapted and refined, resulting in the storybook’s final version. It is understood that these research findings are based specifically on the context at Living Faith Community Presbyterian Church. Creation of the First Draft Before creating the first draft of the storybook, data was obtained from the parent focus group, expert reviewers, and professionals who work alongside the children at Living Faith CPC. The feedback from these sources, coupled with the information received from the literature review, informed the content and formatting of the storybook’s first draft. [ Page ] 67 Parent Focus Group Before the creation of the first draft of this project’s storybook, parents of children with ASD from the congregation of Living Faith Community Presbyterian Church were contacted and asked to form a parent focus group. Four parents agreed to participate in the focus group, while two others preferred meeting in their home due to family and time commitments. The parents provided information regarding their own children’s joys, challenges, and exceptionalities along with communication strategies they have found helpful. It should be noted that this information is specific to these families and may not be shared by others. All information obtained from the parent focus group was considered and employed in the creation of the first draft of this storybook. The findings are as follows: Question: What Brings Your Child Joy? Parent 1 Fun facts Nature Animals Parent 2 Blues Clues (children’s television show) Paw Patrol (children’s television show) Reading Hockey Antique cars Parent 3 Little Einsteins (children’s television show) Crafts Parent 4 Nature Trains Fun facts Parent 5 Trains Baby brother Parent 6 Siblings Family activities Fun facts [ Page ] 68 Question: What are some of your child’s challenges? Parent 1 Communication Understanding others Accepting self Parent 2 The dark Being alone Parent 3 Standing out due to uniqueness Fitting in Feeling accepted Parent 4 Worrying about upcoming changes Fitting in Parent 5 Communication challenges Inappropriate behaviour Parent 6 Behaviour in the classroom Understanding when to be quiet Question: What are some storybook suggestions? Parent 1 Place the story in a contemporary setting (not a biblical one). Depict Jesus in biblical clothing as that is how children are accustomed to seeing him in children’s Bibles and stories. They may not make the connection that it is Jesus if he is portrayed in contemporary clothing. Include fun facts flip-up windows. Parent 2 Include repetition of words and phrases to assist with comprehension Parent 3 Incorporate a contemporary setting and issues Parent 4 Include fun facts, especially about nature Parent 5 No suggestions Parent 6 No suggestions Based on the interpretation of the data obtained from the parent focus group, the first draft of the storybook is based in a contemporary setting; however, Jesus is illustrated in a robe with sandals, long hair, and a beard to assist in the association. Two parents indicated their children love nature and animals, so the main character, a boy named Daniel, is enamoured with penguins and enjoys [ Page ] 69 talking about penguins and painting pictures of them. Flip-up panels including fun facts about penguins are included and key phrases are repeated to aid in comprehension. Issues of anxiety and acceptance are addressed based on the feedback obtained from three parents, which also matched the socio- psychological literature review. Expert Review Three experts who work in the fields of communication therapy, special education, and children’s literature were interviewed to assist in the creation of the storybook’s first draft. Joan Gullen, Communications Specialist The specific communications challenges faced by children with ASD were outlined by Joan Gullen, who provides private one-on-one therapy for children with various speech and communications issues, with a large number of clients who have ASD. In an interview before the creation of the first draft of the storybook, Gullen shared the strategies and techniques that have worked well in her practice, as well as a list of pitfalls to avoid. While children with ASD are delightfully creative and visually adept, she explained they can be easily distracted by literary techniques such as rhyme, metaphor, and open-ended questions or statements, leading to miscommunication and misinterpretation. The uniqueness of every child, including the child with ASD, makes a one-size-fits-all storybook template impossible to attain, but Gullen explained that there are certain commonalities within ASD to be considered in the creation of a storybook [ Page ] 70 that could assist with comprehension and interpretation. The communication strategies that she recommended and were incorporated in the creation of the first draft of the storybook are as follows: • Use no more than five sentences on each page to avoid losing focus and attention. • Use simple language to lessen the risk of misinterpretation. • Avoid metaphors and abstract language. • Avoid the use of rhyme as it can be distracting to a child with ASD who will become fixated on the rhyme and less able to interpret the meaning. • Avoid questions or open-ended comments; instead, use direct statements and suggested responses. • If questions are necessary, use prompting questions, not testing questions. • Repeating certain words or short phrases can assist with a child’s comprehension and interpretation. • Use simple, easy-to-interpret illustrations to display facial expressions. • Illustrations should reflect what is on that specific page without referring to content covered in prior or future pages. In response to the data obtained from Joan Gullen, the first draft of the storybook contains no more than five sentences per page and simple language is employed, avoiding metaphor and abstract concepts. The Social Stories™ communication method is used as well as comic book conversations font style as described in the socio-psychological literature review. There are no open-ended questions or statements, and repetition of specific phrases is used to assist the child in comprehending main themes and directions. The characters and setting are illustrated in comic format with care taken to include easy-to-recognise facial expressions. The illustrations reflect the activity described on that specific page and avoid referring to occurrences on prior or future pages. Prompting statements, as opposed to open-ended questions, are included at the back of the book to assist [ Page ] 71 teachers and parents in furthering the conversation with their students and children. Susan Collingborne, Resource Teacher, Baxter Public School Susan Collingborne has been a teacher at Baxter Public School for over ten years and currently teaches in the resource centre, assisting students who have learning disabilities and challenges including children with ASD. Collingborne is familiar with the Social Stories™ method of communication and employs it in her classroom to instruct children in life skills and coping strategies. She pointed out various posters and instruction sheets located in her classroom that have been created using the Story Stories™ structure and explained how the predictable nature of this methodology assists in comprehension and interpretation. In sharing the concept of this storybook employing the Social Stories™ methodology with a young boy with ASD as the primary character, Collingborne was intrigued. She believes this format could present children with an opportunity to see themselves through the main character. She offered the following strategies and suggestions, which were considered and utilised in the creation of the first draft of the storybook: • Present possible coping strategies and feasible responses instead of open-ended scenarios when Daniel is faced with a challenge. • Provide instructions for the parents and teachers who will be utilising the book with their children and students, as the way in which the story is shared can assist in the child’s comprehension and interpretation. • Consider using the “first...then” structure (i.e. “first we will brush our teeth, then we will play with the toys”). • Focus on positive, hope-filled topics that will bring the child joy. [ Page ] 72 • When the main character, Daniel, faces a challenge or roadblock, provide him with alternate activities that bring him joy. • Use situations that are common to all children, including children with ASD, to assist the child in devising strategies and responses in his/her own lives. • Employ simple, easy-to-interpret illustrations that complement that page’s text. • Using different font colours can be a distraction for the child with ASD. The findings from Susan Collingborne have been interpreted to create a storybook using the Social Stories™ communication method with short, direct sentences providing perspective and direction. Instructions for the parents and teachers are included at the beginning of the book, and prompting statements are included at the end to assist in furthering the conversation. Carolyn Morris, Children’s Author Carolyn Morris recently retired from the teaching profession after spending seventeen years teaching kindergarten students in Christian schools in Alliston and Kleinburg. Morris retired in order to dedicate her time exclusively to her career as a children’s author as she travels to various schools, community events, and seniors’ residences sharing her stories and experiences. Morris is the creator of the Railfence series of children’s books with primary school-age children as the main characters dealing with the joys and challenges of rural life on a farm. She recently developed a new series of stories called The Railfence Bunch which employs animals as the main characters and focuses on childhood experiences, such as the first day of school and family celebrations. Morris provided information about the process of writing for children as well as [ Page ] 73 suggestions about communicating with publishing companies and printing houses. Morris’ recommendations were considered and adapted in the creation of the first draft of this storybook, and they are as follows: • Find a peaceful and engaging space in which to write, free from distractions. • Write near a window to enhance daydreaming and creativity. • Write at a time of rest, after all the chores are done and obligations have been completed. • Do not be afraid to include an aspect of your own personality in the creation of the story’s characters. • Avoid the temptation to write when feeling unwell or uninspired. • Write from experience but allow the creative process to take you to new areas. • Find ways in which to empathise with the characters, trying to view the world through their eyes. • Pray over the process and resulting words. • Enjoy getting to know the characters. • Contact Volumes Publishing in Kitchener for advice regarding printing, publication, pricing, and formatting. In response to the interpretation of the data obtained from Carolyn Morris, the first draft of the storybook was written in in my home, in the family room or at the dining room table, which are places I find comforting and relaxing. While care was taken to write during times when other commitments had been completed, that was not always possible as deadlines were looming and the whirlwind of ministry in the local congregation continued. Morris recommended writing from experience and while I do not have the experience of having autism myself, I wrote from the experience of raising, caring, and advocating for our son with ASD. I attempted to empathise with our son’s experiences and tried to view the specific scenarios in the storybook through his eyes, and the eyes of the children from our congregation, while considering the socio-psychological data obtained in [ Page ] 74 my literature review. Time was also spent in prayer and meditating upon the storybook’s core scripture passage in preparation for writing and after the session was complete. Based on Morris’ recommendation, Volumes Publishing in Kitchener was contacted to determine pricing, printing, and publication options. It was decided the first draft of the storybook would be printed at the local Staples outlet in the interest of cost; further printing and publication options will be considered once the research project’s resulting thesis has been approved. Professional Feedback Two professionals who work alongside the children at Living Faith CPC, including children with ASD, were interviewed and their feedback was considered when creating the first draft of the storybook. Lisa Sawden, Director of Children’s Ministry Lisa Sawden has been employed at Living Faith Community Presbyterian Church for the past two years as the Director of Children’s Ministry and served in the role for a year beforehand in a volunteer capacity. Sawden’s responsibilities include planning and preparing the Christian education program each Sunday while equipping and overseeing volunteer teachers, which includes those who assist in the sensory room. Sawden is a teacher with the Simcoe Country Muskoka Catholic School Board who is on leave to focus on raising her two young children. Sawden often works hands-on with the students in the classroom and [ Page ] 75 sensory room. The information she provided related to education in the Living Faith classroom and sensory room and is as follows: Question: What bring your students joy? • crafts • sensory aids • engaging with one another and the teacher in the classroom Question: What challenges do your students face? • the inability to sit still • lack of focus • becoming overwhelmed in the classroom • the lack of curriculum or materials that help students understand the implications of the gospel on their lives Question: What are some storybook suggestions? • The setting should be in contemporary times as the child would be unable to relate to characters based in biblical times. • Jesus should be depicted in ancient clothing, as commonly illustrated in our children’s Bibles and storybooks, in order to be recognized by the child. The information obtained from Sawden was interpreted and applied in preparing the storybook first draft. Jesus is illustrated wearing a robe and sandals, and has long hair and a beard, as commonly depicted in our children’s Bibles and storybooks. The message of acceptance prevalent in Matthew 19:13-15 is shared in a contemporary setting in the hope that a child with ASD will be able to relate the gospel message to his/her own life. Nancy Gallant, Director of Family Ministries Nancy Gallant was hired by Living Faith Community Presbyterian Church nine years ago, originally as Director of Student Ministries, to lead the junior and [ Page ] 76 senior youth groups and the “Holy Moly” after school club. More recently, Gallant’s hours and responsibilities were expanded to include the direction of our “Messy Church” intergenerational ministry. As Director of Family Ministries, Gallant makes connections with all age groups with the objective of partnering with families in the faith formation of their children and grandchildren. Gallant recently initiated a new ministry at Living Faith called “Living Faith at Home” with the focus of providing faith-based resources for families to use in the home coupled with training provided through quarterly workshops. It is Gallant’s intention to use this research project’s resulting storybook in her ministry. In an interview focussed on the storybook, Gallant provided the following information: Question: What brings your students joy? • learning that they are loved and accepted • participating in various learning techniques, such as crafts, drama, multimedia, games, and stories • discovering ways to serve other students in our ministries Question: What challenges do your students face? • discovering effective ways to understand the gospel and what it means in their lives • being able to focus and engage with the curriculum • trying to focus after coming to a ministry setting after a long day at school Question: What are some storybook suggestions? • provide hope • share a message of love and acceptance • use a contemporary setting and situation This data from Gallant was interpreted and adapted in the formation of the storybook draft. Specifically, the setting and situation are contemporary; the main [ Page ] 77 character experiences joys and challenges at home, in school, and while attending story time at the local library. Hope is portrayed when the main character discovers that Jesus shares his love of penguins and dedicates time, without delay, in speaking with Daniel about their shared interest. Creating the Storybook’s Final Version Once the first draft of the storybook was completed, feedback was obtained from the same three sources: the parent focus group, expert reviewers, and professional workers. This data assisted in the creation of the storybook’s final version. Parent Focus Group Once the first draft of the storybook was complete, participants in the parent focus group were contacted and given copies of the draft. Instructions were given as to how they could engage their children with the book, such as reading it together as part of a bedtime routine and providing opportunities for the children to spend time with the book independently. After interacting with the storybook for one month, the parents were asked for their feedback; specifically, sharing their observations and opinions about the book. This feedback was obtained via email in order to promote more honest responses, which may have been hindered in a face-to-face interview. It is understood that the data obtained from the parents is anecdotal and has been impacted by the parent’s own biases and opinions. Nevertheless, the data was helpful and influenced the creation of the storybook’s final version. The findings were as follows: [ Page ] 78 Question: What were your children’s perceived responses to the storybook? Parent 1 Loved the concept and format Loved the illustrations Confusing when the fun facts suddenly came to an end as they missed them Parent 2 Loved the illustrations Easy for readers and non-readers to engage with the book Liked the fact that Jesus loves everyone no matter how they look or act Parent 3 Liked the fun facts Thought the illustrations were funny Responded well to the different coloured font Parent 4 Wanted to read it again and again Conversed about how everyone is different, about autism, and about how Jesus knows what everybody is like and needs Really liked the page where Jesus is excited to talk with Daniel about penguins Like the different font colours Liked the fun facts about penguins Was fun to read about rockhopper penguins Liked the illustrations of the penguins Parent 5 No response Parent 6 No response Question: What were your own opinions about the book? Parent 1 Very timely Confused by the look on Jesus’ face as it didn’t seem to emulate love and acceptance Parent 2 Appreciated the message of love and acceptance, especially as portrayed in Jesus’ conversations with the main character Some font colours were difficult to distinguish Parent 3 Enjoyed the overall message of Jesus’ acceptance of all children Appreciated spending time reading the book with my child Parent 4 Appreciated how the book led to conversations about differences, acceptance, and Jesus Parent 5 No response Parent 6 No response [ Page ] 79 Question: What are some storybook suggestions? Parent 1 Consider using fun facts flap throughout the entire book or not at all Re-examine some of the illustrations to provide clearer expressions Parent 2 Consider using more specific colours for the font as some were ambiguous Parent 3 Consider the addition of a heart symbol to accompany the word “love” Include more choices of font colours to distinguish among emotions The first sentence on page five should be in black as it is setting the scene, not describing an emotion The use of different tabs on page six is confusing Find a way to highlight Jesus’ name Parent 4 The illustrations should be more realistic and less cartoon-like Jesus should be wearing modern clothing The shade of Jesus’ skin should be darker to be more historically and geographically accurate Too much repetition There are too many times when Daniel is angry, sad, and upset because he can’t talk about penguins There were seven instances of negative emotions, but five would be better The font size when Jesus says, “I love penguins...” is too big making it seem like he is shouting Parent 5 No response Parent 6 No response Some of the data obtained from the parent focus group was contradictory and countered information shared by other parents or discovered from the socio- psychological literature review. As a result, this contradictory feedback was considered but not included in the final version of the storybook. For instance, Jesus is still depicted in historical clothing to aid the child with ASD so as to connect with the Jesus of their Bibles and storybooks, despite one parent’s suggestion that Jesus be depicted in contemporary garb. Repetition is still [ Page ] 80 employed to assist in comprehension and interpretation for the child with ASD based on information from the expert review and autism research data concerning communication exceptionalities, despite one parent’s comment that there was too much repetition. The specificity of some responses was most helpful, and changes were made to the font colours, sizes, and usage of tabs. Specifically, it was determined that the original yellow font could be confused as orange so a different hue with outline was chosen. In response to the parent feedback, black font replaced some of the coloured font for text that was simply factual and did not portray emotion. The story was reviewed in light of comments regarding the large number of negative interactions and the content was adjusted to include more positive outcomes and strategies for Daniel to follow when he needs to wait before talking about penguins. Expert Review Experts in the fields of ASD, education, and children’s literature provided feedback after engaging with the first draft of the storybook. Their responses were considered when creating the storybook’s final version. Joan Gullen, Communications Specialist Upon completion of the storybook draft, Joan Gullen was given a copy and asked to engage with it for two weeks and then provide her feedback. Gullen provided her responses in person and writing, and was most honest in her reflections, offering many suggestions for changes and revision. It is understood [ Page ] 81 that her feedback is impacted by her own opinions; however, her experience, training, and education in the field of communication exceptionalities with children with ASD lends weight and credibility to her responses. They are as follows: Question: What did you enjoy about the book? • Appreciated the “furthering the conversation” section at the back of the book, allowing for engagement between the parent or teacher and child. • The size of the book is appropriate making it easy to share with multiple children at the same time. • Liked having the text and illustrations on one side of the page making it conducive to folding along the spine to share with a group of children. Question: What concerned you about the book? • The overall sentiment of the book can be perceived as being negative. Daniel faces a lot of roadblocks! • Would like to see more positive outcomes for Daniel. • Some illustrations are confusing, especially regarding facial expression. • Would children expect Jesus to show up at the next story time and would they experience stress, anxiety, and worry if he did not? • There is too much text on the second-last page. Question: What are some storybook suggestions? • Avoid black and white statements. • Include more words indicating flexibility, such as “perhaps,” “maybe,” or “sometimes.” • Consider including the words “it’s ok” after describing a challenge. • Regarding the statements at the end of the book, a question demands a response, a comment invites a response. • Include clearer perspective statements, such as “dad will be happy if Daniel waits to speak about penguins.” After interpreting the data obtained from Gullen, the phrases that were perceived as being negative were rewritten to enhance positive outcomes and [ Page ] 82 strategies for the main character, Daniel, including more words indicating flexibility. Gullen’s comments concerning the size of the book were considered, including the prospect of expanding the page to an 8.5x14 format to enhance the book’s use by a teacher or parent reading to multiple children. Susan Collingborne, Special Education Resource Teacher, Baxter Public School Susan Collingborne was provided with a copy of the first draft of the storybook and asked to provide her feedback and opinions. After reviewing the book for two weeks, Collingborne provided her thoughts in writing. Her perspective as a teacher who works regularly with children with ASD was most appreciated and she was able to give her opinions based on her experience in the classroom, indicating how she perceived her students would respond. It is understood that Collingborne’s feedback has been influenced by her own opinions; however, her experience, training, and education in the field of special education provides a unique and helpful perspective. Her responses are as follows: Question: What did you enjoy about the book? • It’s a fun, light story. • I enjoyed the use of comic book conversations. • Engaging with the book would provide an educator or parent casual time together with the child. • The book is also appropriate for a primary-school age child to engage with independently. • The activities that Daniel participates with in the book are familiar to children and allow them to connect with the character. [ Page ] 83 Question: What concerned you about the book? • Some children with ASD might find it difficult to stay focused long enough to read the story. • Children with ASD often face other challenges, such as anxiety and learning disabilities, which may make this form of communication difficult. Question: What are some storybook suggestions? • Provide fun activities for Daniel to do while he is waiting to speak about penguins. • Include another family member, such as a sibling, to provide perspective and round-out the family. • The different font colours could be distracting to a child with ASD so discover what works best for the children for whom this research is directed. Based on Collingborne’s responses, more positive scenarios were included in the book, providing the main character with fun activities to engage with while he is waiting to speak about penguins. It was decided to continue using the different font colours despite Collingborne’s concerns as they were generally well-received by the children involved in the research, according to their parents’ opinions. An infant sibling had already been included in the original draft, which was determined to be sufficient in “rounding-out” the family, as per Collingborne’s suggestion. Carolyn Morris, Children’s Author Carolyn Morris engaged with the draft version of the storybook for a period of two weeks and provided her feedback in writing and also in person during an interview. Morris’ opinions regarding the intricacies of printing and publishing were most helpful, and she was able to comment on the storybook’s [ Page ] 84 content from her perspective as a children’s author and former primary school educator. Her responses are as follows: Question: What did you enjoy about the book? • The information page at the beginning is easy to understand for those without a teaching or special education degree. • Love the overall concept of the story. • Appreciate the simple, repetitive text and details. • Fun to spot the addition of penguins on each page, such as on the bookshelf, PJs, shirt, etc. • Enjoyable and educational fun facts. Question: What concerned you about the book? • Will Daniel ever feel cozy brown? (This comment is in reference to the comic book conversations font colour). • The yellow font sometimes looks orange. • There’s inconsistency in the use of “storytime” or “story time.” Question: What are some storybook suggestions? • Consider including a biography for the author and illustrator as some readers enjoy that information. • In pagination, allow for copyright, ISBN, and title page information. • Lift-flaps for the fun facts may be difficult and costly to include. Carolyn Morris’ feedback centred mainly around formatting and publishing information. Based on this information, along with pricing and formatting concerns from Volumes Printing, it was decided the lift-up flaps for the fun facts would be too costly and difficult to include. Fun facts will still be included in the final copy of the storybook but in a different format at the end of the book. In order to preserve the interactive element of the fun facts section, an activity related to penguin facts will be included. [ Page ] 85 Professional Feedback The first draft of the storybook was used by Lisa Sawden in her ministry and was reviewed by Nancy Gallant. Their feedback was taken into consideration in the creation of the final version of the storybook. Lisa Sawden, Director of Children’s Ministry Following the completion of the storybook draft, Lisa Sawden was given a copy which she reviewed for a period of three weeks. Sawden used the storybook in the Sunday School classroom, then provided feedback and suggestions in writing and also in person during an interview. The information obtained from Sawden contains her opinions about how the children in her ministry responded to the storybook. Her responses are as follows: Question: What did you enjoy about the book? • The text was easy to read, even with the different coloured font. • The images were well done and corresponded well to the text, assisting the children in following the story. • Even children who are only beginning to read could easily follow the story. • The fun facts were a nice addition and connected with the overall story, especially at the end when Daniel and Jesus talk about penguins. • The instructions at the beginning of the book are helpful and necessary to understand the use of the different coloured font. • The repetitive nature of sections of the story is extremely helpful in highlighting Jesus’ love and acceptance. • Children often need to wait in life so they were able to connect with Daniel. • Jesus communicates with Daniel in a way that allows Daniel to know Jesus is always there for him and he does not have to wait to speak to Jesus. [ Page ] 86 Question: What concerned you about the book? • When reading the book in the classroom, some of the children asked about the different coloured font, so it was a bit distracting. • Some of the colours were confusing and didn’t correspond with the intended emotion. • The length of the book was a little long for application in the Sunday School classroom setting, leaving little time for discussion or follow- up conversations. Question: What are some storybook suggestions? • Make the font colours easier to distinguish. • Alter the length of the book, perhaps creating a shorter version for the classroom and a longer version for home. Based on the responses from Sawden, the font colours were changed, specifically yellow was altered to distinguish it more from orange. While a second, shorter, version of the book has not been created, it is something to consider for the future based on Sawden’s concerns about the lack of time for discussion or conversation. Nancy Gallant, Director of Family Ministries Gallant reviewed the book from her perspective of using it in the future with the new Living Faith at Home ministry. She provided her personal opinions and feedback in writing and in person during an interview. Her responses are as follows: Question: What did you enjoy about the book? • Loved the hope-filled story of acceptance by Jesus that was easy to comprehend through the main character, Daniel. Question: What concerned you about the book? • The yellow font colour was difficult to distinguish from orange. [ Page ] 87 • The purple font colour was confusing in its usage. It was used at times when it didn’t seem appropriate. Question: What are some storybook suggestions? • Use shadowing or outline to assist in seeing the yellow font colour. • The phrase “Jesus walked through the crowd...” should be in brown font. • Find a better shade of purple font. • Use the purple font more appropriately. Gallant’s feedback was more technical in nature but provided assistance in ensuring appropriate font colours were being used. Based on Gallant’s responses, and that of the other reviewers, the yellow font colour was changed to distinguish it more clearly from the orange. The use of purple font was also re-examined and in some places was replaced by black. Summary The suggestions and opinions provided by the parent focus group, expert review, and professional feedback were interpreted and considered in making changes to the first draft of the storybook, resulting in its final version. The use of font colour was re-examined in some instances and the choice of colours was changed to better represent the sentiment being expressed. The yellow font colour needed adjusting to distinguish it more clearly from the orange font. The length of the draft was maintained, but consideration will be made in the future regarding the creation of a shorter version which would be better suited for use in the classroom. It was decided that using flip-up tabs for the fun facts would be too costly at this time, but the interactive element was maintained through the creation of a fun facts section near the end of the book. [ Page ] 88 While it is very difficult to determine if a child’s faith has been strengthened or if s/he feels more accepted and loved by Jesus after engaging with the storybook, the positive opinions obtained from the parents, experts, and professionals indicates that the storybook has an overall positive message and depicts Jesus as someone who is caring and accepting, especially for the child with ASD. Unexpected Outcomes This research did result in some outcomes that were unexpected and are worth mentioning. It was surprising when some parents who have a long-term connection with our congregation declined to participate in the research project, stating they want to keep their child’s diagnosis private. This response is a reminder to me that not all parents want to talk openly about their child’s disability and I need to honour that choice. Another surprise was the lack of response from two parents (the mother and father of one of the children with ASD) who were very excited about the research project and enjoyed sharing the book with their child but failed to provide feedback despite being reminded three times. I believe this is an indication of the hectic schedule experienced by many families, especially those with children with ASD. The task of responding to this research project was likely one more obligation for an already over-tasked family, and they just could not fit it into their schedule. As a minister, this is a reminder of the need for leaders to respect families’ schedules and come alongside them in discovering ways to enhance their time with one another and God. [ Page ] 89 CHAPTER 6: CONCLUSIONS AND IMPLICATIONS While the experience of autism is unique to every individual, this research project has revealed some commonalities which, when addressed, may make it easier for children with ASD to connect with the stories of the Bible by taking into consideration their unique communication exceptionalities. This chapter will focus on ways in which the conclusions of this research project may assist children with ASD beyond the host congregation with thoughts about the future implications of this project, including the possible creation of further storybooks based on other passages of scripture. Conclusions The data obtained from the parent focus group, expert review, and professional feedback provided a personal face to the impersonal research obtained from the theological framework and socio-psychological literature review. The phrase “if you’ve met one person with autism, you’ve met one person with autism” has been quoted by many authors and autism advocates (Mayberry 2010, 15) and contains validity; however, the personal experiences of the children in this research project, as observed and reported by their parents and teachers, confirms that within the individuality of autism there are common challenges and [ Page ] 90 joys. When these commonalities are taken into consideration, the message of the gospel can be shared in a way that may assist children with ASD in developing a better understanding of who God is and who he has created them to be. Unknowingly, congregations may be creating barriers in communication that are just as prohibitive as actual physical barriers, preventing little children from coming to Jesus, as reflected in the attitude of the disciples portrayed in this project’s focus scripture passage (Matthew 19:13-15). When congregations take time to re-examine how the gospel is shared, while considering the unique communication exceptionalities of those with ASD, they may successfully break down those barriers and better reflect the kingdom of God where every member of the body is accepted and valued. This research project’s resulting storybook could be a tool that congregations access to assist them in sharing the message of Matthew 19:13-15, allowing the little children, specifically the child with ASD, to come to Jesus. Storybook Content Within the scope of this research project, the commonalities that were discovered among children with ASD include the effects of anxiety, sensory integration disorder, and social challenges, along with the tendency of the child to fixate on certain topics or behaviours. These commonalities were addressed in the resulting storybook through the main character, Daniel, who loves penguins and desires to speak about them often, even at times when it isn’t appropriate. Daniel is presented with positive coping strategies to use while he’s waiting to speak about penguins, such as drawing a picture or reading a book, which allow him to [ Page ] 91 develop patience and lessen his anxiety, while also discovering how his actions can positively influence the people around him. The issue of ‘fitting in’ and social awkwardness, as identified by the parent focus group and the socio-psychological literature, was acknowledged by Daniel’s hesitancy to join the rest of the children at story time, as he remains at the back of the gathering of children who have surrounded Jesus at the library. In the storybook, Jesus recognises Daniel’s reluctance and instead of expecting Daniel to join the children, Jesus comes to him, illustrating how Jesus knows his children fully and accepts them just as they are. Jesus then engages Daniel in conversation about his favourite topic, penguins, as a demonstration of the relationship that is possible with Jesus who knows our every need and desire. Faith is subjective and thus is difficult to gauge and measure, and it is acknowledged that it is challenging to determine if this storybook assisted in strengthening the child’s faith or understanding of Jesus; however, the observations provided by the parents and teachers were heartening. One parent observed her children discussing how the storybook’s portrayal of Jesus understanding Daniel’s anxiousness and sharing his love of penguins led to further conversations about exceptionalities and acceptance. One expert reviewer mentioned that other children with ASD may be able to see themselves through the main character, leading to the conclusion and implication that the reader, too, may experience a better understanding of Jesus’ acceptance and love with a burgeoning realisation of the gift of their uniqueness. [ Page ] 92 Storybook Format While the unique issues affecting the child with ASD are addressed in the storybook through the main character Daniel, the method in which the story is relayed is as important as the content to ensure that the message is understood and integrated by the child with ASD. This research project was initiated with the acknowledgment that very few Bible-based resources are available that address the specific communication exceptionalities of the child with ASD, so it was concluded that the Social Stories™ method be used to share the message of Matthew 19:13-15, coupled with the comic book conversations font style, to fill that resource gap. Conclusions from the parent focus group, expert reviewers, and professional feedback were positive regarding the Social Stories™ method but revealed some ambiguity about the different coloured font of the comic book conversations with concerns that it may be confusing or distracting for the child with ASD. It was decided to retain the coloured font to serve as an extra aid in assisting the child with ASD in better understanding the emotional intent contained behind the text, but that decision may be revisited if the storybook is used more widely beyond the Living Faith congregational context. Results from the parent focus group indicated that the use of flip-up flaps to introduce fun facts about penguins would be an exciting addition to the storybook; however, the increased cost and intricacies involved in formatting resulted in the decision to forgo the flip-up flaps at this time. In the future, this decision could be re-examined and further research conducted to find a way in which the flip-up flaps could be added in a cost-effective and efficient manner. [ Page ] 93 Implications This research project was initiated as a response to an immediate need identified within the congregation at Living Faith; however, the resulting storybook could be implemented beyond this congregational context. Data obtained in this project reveal that the number of children with a diagnosis of ASD is increasing with the implication that there are many congregations within The Presbyterian Church in Canada and beyond that include children with ASD among their worshipping communities. The unique communication exceptionalities of children with ASD will need to be considered if congregations are to share the gospel message in a manner that is relevant and meaningful for this growing segment of the community. This research project’s resulting storybook may assist in this objective. At Living Faith The leadership team at Living Faith has taken steps to address the unique challenges of children with ASD and their families through the implementation of a sensory room and the application of specific curriculum that considers unique learning styles. This research project’s resulting storybook will be an extra tool for teachers to access within the sensory room and regular classroom to share the message of Matthew 19:13-15 using a communication strategy geared specifically for the child with ASD. Our Director of Family Ministries, Nancy Gallant, will also implement this storybook in the newly created Living Faith at Home ministry, making it available to families upon the celebration of the various milestones of faith, such as baptism or membership. The Living Faith at Home [ Page ] 94 ministry also includes quarterly workshops, and it is intended that this storybook, along with a presentation of the information regarding ASD obtained in this research project, will form the basis of one of those workshops. It is hoped that the data from this research project will assist the congregation in addressing the unique challenges and joys faced by children with ASD and their families, allowing them to experience the love and acceptance of Jesus Christ through the care and attention of the local congregation. While the scope of this research project was small and included observations from the parent focus group regarding their own children who are connected with Living Faith, it is hoped that the issues contained in this project could be transferable to other congregations and faith groups within The Presbyterian Church in Canada and beyond. Beyond Living Faith The results of this research project were recently shared with the Barrie Presbytery as part of an education event and the feedback from the ministers and elders present indicate interest in this topic beyond the scope of the Living Faith congregation. In conversation with members of the Presbytery following the presentation, many individuals shared their experiences of having a child of their own with ASD or ministering to a child with ASD in their congregation. Much of the information regarding the Social Stories™ and comic book conversations communication methods was new to the members of Presbytery and generated much interest and conversation. I have since been asked to share these findings at an upcoming Presbytery workshop which would be attended not just by [ Page ] 95 presbyters, but congregants of the forty-three churches within the bounds of the Presbytery would also be invited. I have also been approached by the national office of The Presbyterian Church in Canada to share the findings of this research project during an online video webinar education event in 2018, which would be accessed by individuals across the country. It is heartening to discover a shared desire among our congregations to learn more about the unique needs of children with ASD in sharing the gospel, acknowledging that our current communication methods may be creating a barrier in letting little children come to Jesus. The opportunities to share the results of this research project are presently contained to The Presbyterian Church in Canada; however, once the storybook is more widely available, it could be implemented in congregations from other denominations and within a variety of different settings. The needs of the child with ASD are not unique to one segment of Christ’s church and the storybook’s message of love and acceptance is not denominationally-specific. It is hoped that the storybook may find a home with any family or congregation that is yearning to let the little children come to Jesus. Beyond Autism This research project specifically addresses the issues of autism as experienced by primary school-age children in response to a gap in communication that had been perceived regarding this demographic. In furthering the conversation, the local congregation may address other barriers in the areas of communication, acceptance, accessibility, and hospitality that may exist for those with other exceptionalities. Are children with mobility issues, hearing or vision [ Page ] 96 challenges, mental impairment, or difficult medical diagnoses experiencing the gospel in ways that are relevant to their needs? While these issues go beyond the scope of this research project, every congregation is encouraged to reflect upon the exceptionalities present within their community and discover ways in which the gospel can be shared meaningfully and relevantly by taking those unique needs into consideration. While this research project focused on primary school-age children, as children with ASD age, the sources of anxiety, social challenges, and sensory issues may also change and will need to be addressed. Further research into the issues faced by teenagers, adults, and seniors with ASD would need to be conducted with the goal of finding ways to share the gospel using relevant methods of communication that take into consideration the individual’s stage of life. The implications of this research project extend to all of God’s children, regardless of their age or exceptionality, encouraging the local congregation to discover new and unique ways in which it can be a place of acceptance and love, where the stories of Jesus can be accessed and understood by all. Possible Next Steps This research project’s resulting storybook is aimed at primary school-age children with ASD and is based on the story of welcome as described in Matthew 19:13-15 using the Social Stories™ and comic book conversations communication methods. Possible next steps include the creation of further storybooks utilising the same communication methods to share the message [ Page ] 97 contained in other stories of the Bible. This could result in the creation of a series of storybooks highlighting the main themes of the Old and New Testaments. Another possible next step could be to conduct further research into the unique needs of youth and adults, including seniors with ASD, resulting in the creation of a new type of book employing a different communication method to share the gospel in ways that are relevant and meaningful for that age group. This next step would involve dedicating time to researching the communication exceptionalities of these other age groups, as the Social Stories™ and comic book conversations methods would likely not be transferable. In conversation with our ministry team at Living Faith concerning this research project, there was discussion regarding the creation of other methods of communication to accompany the storybook such as an interactive app for a tablet or smartphone, and the creation of a song that would allow the child to better integrate and remember the theme of the storybook. A possible next step would be to explore these future possibilities and engage more people including Living Faith’s Music Director and a specialist in information technology to create accompanying communication opportunities. Methods of communication are expanding and changing dramatically and involve a variety of different strategies, such as social media, multimedia, and even virtual reality. Further research involving the effectiveness of these evolving communication methods could be undertaken to discover how they can be utilised to accompany this research project’s resulting storybook, thereby, assisting the child with ASD to engage further with the story of acceptance and love in Matthew 19:13-15. [ Page ] 98 Personal Reflection In looking back upon this journey, I realise that this research project is the result of steps that were put into place long before I began my Doctor of Ministry studies. My personal connection with ASD through our son, the growing needs of our children’s ministry at Living Faith, along with the recommendations of the ad-hoc children’s ministry sub-committee in 2015, came together for such a time as this. If I were to do anything differently on this journey, it would be to discover ways to tend to the needs of the parents throughout the research period, providing support in their day-to-day challenges in practical and prayerful ways. It would have been beneficial to provide a parent support small group concurrently with the research project, with the understanding that it would be led by someone other than myself in order not to impact or taint the research in any way. The process of engaging with the parent focus group, expert reviewers, and professionals throughout this research project has revealed to me a level of compassion, care, and tenderness that reflects the kingdom of God. I am so thankful to have taken this journey of discovery with these families and look forward to continuing to travel with them as we discover new ways to impact the lives of their wee ones with the gospel of Jesus. Parents dealing with crammed schedules, appointments, challenges, and disappointments, along with juggling the care of other siblings and family members, were able to describe moments of pure joy as revealed to them through their children. Amid the challenges associated with anxiety, social awkwardness, and sensory issues, children with ASD bring a unique perspective to our world by viewing it through a different [ Page ] 99 lens. Our communities of faith are made richer when we see the Jesus of the Bible experienced through a child with ASD as they discover they have been created in his image with value, purpose, and joy. The entire community benefits when care is taken to include all in the family of faith, ensuring that everyone, including the child with ASD, is welcomed and accepted. When the congregation extends welcome to all, it is incarnating—putting flesh on—God’s inclusive welcome. May all congregations prayerfully and practically re-examine how the message of the gospel is shared, taking into consideration the unique communication exceptionalities of children with ASD, so Christ’s church can truly become a place where the little children, all the little children, come to Jesus. [ Page ] 100 APPENDICES [ Page ] 101 Appendix A: Parent Focus Group Questions Child’s Name: _________________________________ Child’s Age:_________________ Child’s Grade (if applicable):_________________ Parents’ or Guardians’ Name(s): _________________________________ Date of Parent Focus Group Meeting:_________________________________ Location of Meeting: _________________________________ 1. Describe your child’s interests and strengths. 2. Share the dreams and goals you have for your child. 3. What activities/situations are difficult for your child? 4. Describe how your child responds to books (i.e., does s/he prefer to be read to, to explore a book on his/her own, to engage with an interactive- style book, books with bold colours, rhyming books)? 5. What brings your child the greatest joy? 6. What are your child’s greatest fears/worries? 7. What other information would you like to share with me about your child and/or your family? [ Page ] 102 Appendix B: Questions for Parent Focus Group After Engaging with the First Draft of the Storybook for One Month 1. Describe how you have implemented the storybook at home. 2. Describe any changes in behaviour or general attitude that you have noticed in your child since implementing the storybook. 3. Has your child spoken more about God, Jesus, and issues of faith since using the storybook? 4. Suggest ways in which this storybook could be improved. This could relate to colour, style, format, illustrations, as well as content. 5. Will you continue to use this storybook in your family? 6. What other topics/biblical stories would you like to see explored in any future books? [ Page ] 103 Appendix C: Questions for Expert Reviewers Name of expert: _________________________________ Area of expertise: _________________________________ Date and location of interview: _________________________________ PART 1 (Early stages of storybook development) Describe for me the challenges in communication faced by the majority of children with ASD. How have you addressed these challenges in your practice/classroom? How can these challenges be addressed in a storybook geared for primary school- age children? Could you provide me with a list of books that you have found to be helpful in communicating with primary school-age children with ASD? PART 2 (After the first draft of the storybook has been reviewed) What areas of concern do you see in this draft? How can it be improved, based on your expert opinion? What next-steps to I need to take before creating the finished product? [ Page ] 104 Appendix D: Questions for Professional Feedback Date of Interview:_________________________________ Location of Interview:_________________________________ 1. Describe this child’s interests and strengths as displayed in the classroom setting. 2. What are your dreams and goals for this child in your classroom? 3. What activities/situations are difficult for this child in the classroom? 4. What are your biggest challenges in teaching this child? 5. What support do you need in the classroom to effectively teach this child? 6. What types of books does this child seem to enjoy? (i.e., picture books, rhyming books, cartoon books, real-life books). 7. What other information would you like to share with me about this child and the experience in your classroom? [ Page ] 105 Appendix F: Information Letter for Participants in the Parent Focus Group Designing a Storybook for Sharing Faith with Primary School-Aged Children with Autism Spectrum Disorder and request for your consent in participating in this study. Over the past five years, Living Faith has experienced growth in “The Bridge” Children’s Ministry, which is a blessing to our congregation. There has also been increased participation with children with Autism Spectrum Disorder (ASD), which is proportionate to the findings in the wider population indicating that the number of children with a diagnosis of ASD has increased dramatically in recent years. In order to assist families who have children with ASD and to partner in the faith formation of their children, I (Rev. Heather) am proposing the design and implementation of a tool - specifically a specialized storybook - which may be used in the classroom and at home. The goal of this storybook is to strengthen the faith of children, especially children with ASD, and to assist them in discovering a sense of God’s love and protection. To assist me in creating appropriate content and design of this storybook, I will obtain data from families and teachers and will conduct an extensive literature review. Feedback on the book’s content and format will also be sought from experts in the fields of children’s literature, special education, and ASD therapy. This research will be conducted under the supervision of the Session at Living Faith, as well as my Project-Thesis Advisor, Rev. Dr. Bill Thornton, Project- Thesis Coordinator: Dr. Mark Chapman, and Program Director, Dr. Paul Bramer in the Doctor of Ministry Department at Tyndale Seminary in Toronto. This study will conform to all requirements of Canadian ethical guidelines as outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and the Tyndale Research Ethics Policy Manual. I invite you to participate in a parent focus group to help me discover information which will assist in the formation of the storybook. Living Faith’s Children’s Ministry Director will also be interviewed for the same purposes. Notice of at least two weeks will be given in advance of the meeting of the focus group and it will be conducted at Living Faith. Confidentiality of all information shared will be guaranteed and all data will be stored in a locked file cabinet in my office. You will be invited to share as much —or as little—as you feel comfortable. [ Page ] 106 Total anonymity in this research study may not be possible due to the small scale of the study and the collegial nature of our congregation, so please do not agree to participate in this research if you are concerned about remaining anonymous. Your participation is completely voluntary and you will be free to opt-out of the study at any time without consequence. You are not waiving any legal rights if you choose to participate in this research. A prototype of the proposed storybook will be made available by December 2016 and you will be invited at that time to share this book with your child in the home and in the classroom at Living Faith. Your feedback will then be sought regarding your opinions about how your child has interacted with the book. This information will help me in determining if the storybook has been successful in sharing issues of faith with your child and will assist me in making any changes or revisions in possible future books. The research project will conclude at the end of 2017 and my final thesis will be presented to the faculty at Tyndale Seminary early in 2018. If you have any questions, please direct them to me, Rev. Heather Malnick, (I am the only person who can access this email account). If you have any concerns about this research, please contact our Clerk of Session, Bryce Hawkins. You may also direct any questions or concerns about the ethical nature of this study to the Chair of the General Research Ethics Board at Tyndale Seminary at reb@tyndale.ca. Thank you for considering participation in this study as we work together to enhance the spiritual development of our children and create a space of warmth and welcome at Living Faith. Peace be with you, Rev. Heather Malnick [ Page ] 107 Appendix G: Research Study Consent Form for Participants in Parent Focus Group Designing a Storybook for Sharing Faith with Primary School-Aged Children with Autism Spectrum Disorder Name (please print): _________________________________ 1. I have read the above Letter of Information outlining the purpose and details of this research project and have had an opportunity to ask any relative questions. 2. I understand that I will be participating in a study that involves sharing information about my child to assist in the design of a specialized storybook for children with ASD. I will be asked to participate in a parents’ focus group and to share this storybook with my child at home and to provide feedback. I will be asked to answer questions about my child and possibly about our family. 3. I understand that the Children’s Ministry Director will be interviewed to provide information and feedback about my child’s participation in “The Bridge” Children’s Ministry, including how the resulting storybook has been used in the classroom and sensory room. 4. I understand that my participation in this study is voluntary and I may withdraw at any time without consequence. I am not waiving any legal rights by participating in this study. 5. I understand that every effort will be made to maintain the confidentiality of the data now and in the future. The data may also be published in professional journals or presented at conferences, but any such presentations will be of general findings and will never breach individual confidentiality. Should you be interested, you are entitled to a copy of the findings. 6. I understand that due to the small scale of the study and the collegial relationship with the congregation that complete anonymity may not be possible, but confidence will always be respected. 7. I am aware that if I have any questions about study participation they may be directed to Heather Malnick Any concerns about this project can be directed to our Clerk of Session, Bryce Hawkins, [ Page ] 108 Any ethical concerns about the study may be directed to the Chair of the General Research Ethics Board, reb@tyndale.ca. I have read the above statements and freely consent to participate in this study through my involvement in a parent support group: YES____ NO____ I agree to have my child observed in “The Bridge” classroom by the Children’s Ministry Director who will be interviewed by Rev. Heather as part of her research: YES____ NO____ Signature:_________________________________ Date:_________________________________ [ Page ] 109 Appendix H: Information Letter Regarding Research Project for Expert Reviewers and Professional Feedback Designing a Storybook for Sharing Faith with Primary School-Aged Children with Autism Spectrum Disorder and request for your consent in participating in this study. Over the past five years, Living Faith has experienced growth in “The Bridge” Children’s Ministry, which is a blessing to our congregation. There has also been increased participation with children with Autism Spectrum Disorder (ASD), which is proportionate to the findings in the wider population indicating that the number of children with a diagnosis of ASD has increased dramatically in recent years. In order to assist families who have children with ASD and to partner in the faith formation of their children, I (Rev. Heather) am proposing the design and implementation of a tool—specifically a specialized storybook—which may be used in the classroom and at home. The goal of this storybook is to strengthen the faith of children, especially children with ASD, and to assist them in discovering a sense of God’s love and protection. To assist me in creating appropriate content and design of this storybook, I will obtain data from families and teachers and will conduct an extensive literature review. Feedback on the book’s content and format will also be sought from experts in the fields of special education, ASD therapy, and children’s literature. This research will be conducted under the supervision of the Session at Living Faith, as well as my Project-Thesis Advisor, Rev. Dr. Bill Thornton, Project- Thesis Coordinator: Dr. Mark Chapman, and Program Director, Dr. Paul Bramer in the Doctor of Ministry Department at Tyndale Seminary in Toronto. This study will conform to all requirements of Canadian ethical guidelines as outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and the Tyndale Research Ethics Policy Manual. I invite you to engage in conversation with me concerning your specific expertise in the field of education/support/therapy for children with ASD. The information you share with me will assist in the creation of the faith-based storybook and will help inform the content and format of the book. Confidentiality of all information shared will be guaranteed and all data will be stored in a locked file cabinet in my office. You will be invited to share as much—or as little—as you feel comfortable. [ Page ] 110 Total anonymity in this research study may not be possible due to the small scale of the study and the collegial nature of our congregation, so please do not agree to participate in this research if you are concerned about remaining anonymous. Your participation is completely voluntary and you will be free to opt-out of the study at any time without consequence. You are not waiving any legal rights if you choose to participate in this research. If you have any questions, please direct them to me, Rev. Heather Malnick, (I am the only person who can access this email account). If you have any concerns about this research, please contact our Clerk of Session, Bryce Hawkins. You may also direct any questions or concerns about the ethical nature of this study to the Chair of the General Research Ethics Board at Tyndale Seminary at reb@tyndale.ca. Thank you for considering participation in this study as we work together to enhance the spiritual development of our children and create a space of warmth and welcome at Living Faith. Peace be with you, Rev. Heather Malnick [ Page ] 111 Appendix I: Research Study Consent Form for Expert Reviewers and Professional Feedback Designing a Storybook for Sharing Faith with Primary School-Aged Children with Autism Spectrum Disorder Name (please print): ________________________________________ I have read the above Letter of Information outlining the purpose and details of this research project and have had an opportunity to ask any relative questions. I understand that my participation in this study is voluntary and I may withdraw at any time without consequence. I am not waiving any legal rights by participating in this study. I understand that every effort will be made to maintain the confidentiality of the data now and in the future. The data may also be published in professional journals or presented at conferences, but any such presentations will be of general findings and will never breach individual confidentiality. Should you be interested, you are entitled to a copy of the findings. I understand that due to the small scale of the study and the collegial relationship with the congregation that complete anonymity may not be possible, but confidence will always be respected. I am aware that if I have any questions about study participation they may be directed to Heather Malnick Any concerns about this project can be directed to our Clerk of Session, Bryce Hawkins.Any ethical concerns about the study may be directed to the Chair of the General Research Ethics Board, reb@tyndale.ca. I have read the above statements and freely consent to participate in this study: YES____ NO____ Signature:________________________ Date:________________________ [ Page ] 112 Appendix J: First Draft of the Storybook Jesus Loves Penguins...and Me! [ Please contact repository@tyndale.ca for illustration details ] Written by Heather Malnick Illustrated by John Malnick [ Page ] 113 Jesus Loves Penguins...and Me! This book has been created specifically for primary school-age children with Autism Spectrum Disorder (ASD) using an adaptation of the Social Stories™ and Comic Book Conversations™ models of communication created by author and educator, Carol Gray. The Social Stories™ model uses a combination of descriptive, directive, perspective, and affirmative sentences. Descriptive sentences provide factual information or statements. Directive sentences suggest an appropriate response or choice in the situation. Perspective sentences explain a person’s perception of the situation, describing thoughts, emotions, beliefs, opinions, motivation, and knowledge. Affirmative sentences explain a commonly shared value, opinion, or rule. The Comic Book Conversations™ model uses font colour to communicate specific emotions and feelings. Green - good ideas and happy thoughts. Red - bad ideas and anger. Blue - sadness or sorrow. Yellow - fear. Black - facts and truth. Orange - questions. Brown - comfortable and cozy emotions. Purple - pride. A combination of colours - confusion Parents/teachers and their children are encouraged to read this book together in a cozy place, perhaps as part of a child’s daily routine at home, or weekly routine at church. At the end of each page, the child and parent/teacher are invited to engage in intentional conversation by discussing together possible ways to respond to the situation described on the page. Parents/teachers can initiate the conversation by using prompting statements, examples of which are located at the end of the book. Fun Facts are located on pages that introduce information about penguins. Parents/teachers are encouraged to invite the child to lift the flap and reveal the Fun Fact after the page has been read. The story in this book is a retelling of Jesus welcoming little children to come to him, as found in Matthew 19:13-15, with the prayer that all children - including those with ASD - would know that they are loved, understood, and accepted by Jesus who created them just as they are. [ Page ] 114 Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them. Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” When he had placed his hands on them, he went on from there. Matthew 19:13-15 (NIV) Special thanks is extended to my husband, John, for his thoughtful illustrations, my DMin cohort and thesis advisor at Tyndale Seminary for their feedback and guidance, and our son, Ben, for his love of penguins. [ Page ] 115 Daniel loves penguins. He loves penguin books, penguin games, penguin movies, and penguin toys. Daniel also loves talking about penguins. He loves talking about penguins A LOT. Daniel feels happy when he talks about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 116 Sometimes, when Daniel’s dad is busy taking care of his younger brother, he tells Daniel it’s not the right time to talk about penguins. This makes Daniel feel upset because he loves talking about penguins so much. Daniel needs to wait until his dad is finished. THEN he can talk with him about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 117 Sometimes, when Daniel’s mom is busy working on the computer, she tells Daniel it’s not the right time to talk about penguins. This makes Daniel feel angry because he loves talking about penguins so much. Daniel needs to wait until his mom is finished. THEN he can talk with her about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 118 Sometimes, when Daniel’s friends are working together on a puzzle, they tell him it’s not the right time to talk about penguins. This makes Daniel feel angry because he loves talking about penguins so much. Daniel needs to wait until his friends are finished. THEN he can talk with them about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 119 One day at school, Daniel’s teacher gave each student a piece of paper and said they could draw a picture of their favourite thing. Daniel drew a picture of his favourite thing. It was a penguin. It was a rockhopper penguin. Rockhopper penguins are Daniel’s favourite because they have black and yellow spiky feathers on the sides of their head that make them look funny. Daniel was proud of his picture. It made him happy when he looked at it. He wanted to show his picture to his friends and tell them all about rockhopper penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 120 Daniel showed his picture to his friend, Sarah, and wanted to tell her all about rockhopper penguins. But Sarah was busy playing blocks and said it wasn’t the right time to talk about penguins. This made Daniel feel sad. He needed to wait until Sarah was finished. THEN it was the right time to talk about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 121 Daniel showed his picture to his friend, Thomas, and wanted to tell him all about rockhopper penguins. But Thomas was busy painting and said it wasn’t the right time to talk about penguins. This made Daniel feel sad. He needed to wait until Thomas was finished. THEN it was the right time to talk about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 122 At the end of the day, when it was time to go home, Daniel carefully packed his picture of the rockhopper penguin in his backpack. He wanted to show his mom and dad. He wanted to tell them all about rockhopper penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 123 When Daniel got home from school, his dad was changing his baby brother’s diaper. It was smelly! Daniel showed him his picture and started telling him all about rockhopper penguins. Dad said it wasn’t the right time to talk about penguins because he was busy and it was too smelly. That made Daniel upset. He needed to wait until dad was finished. THEN it was the right time to talk about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 124 Daniel’s mom was in the living room. She was vacuuming the floor. It was noisy! Daniel showed her his picture and started telling her all about rockhopper penguins. Mom said it wasn’t the right time to talk about penguins because she was busy and it was too noisy. That made Daniel angry. He needed to wait until mom was finished. THEN it was the right time to talk about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 125 The next day, Daniel’s dad took him to story time at the library. Daniel liked story time. He brought his picture of the rockhopper penguin with him because he loved it so much. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 126 Daniel’s dad told him that a man named Jesus was leading story time that day. He had heard about Jesus. He had heard that lots of people had begun following Jesus. Daniel was a little nervous. Crowds of people were sometimes noisy. Meeting new people was sometimes scary. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 127 When they got to the library, Daniel saw lots of children and lots of adults around Jesus. Some were sitting and some were standing. Some were trying to get closer to Jesus. It was noisy. It was crowded. Daniel stayed at the back of the crowd. He held his picture of the rockhopper penguin close to his chest. He didn’t want it to get crushed. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 128 Jesus was sitting down in the special story time chair. He was talking to the children. He put his hand on their heads and smiled at them. He looked kind. He looked friendly. Daniel wished he could get closer to Jesus, but it was too noisy. It was too crowded. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 129 Jesus stood up. He looked over the crowd of people and he saw Daniel standing at the back of the room with his dad, holding his picture of the rockhopper penguin close to his chest. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 130 Jesus walked through the crowd and stood right in front of Daniel. He knelt down so Daniel could see his face. Jesus had kind eyes. Jesus had a kind smile. Jesus touched Daniel on the top of his head and it made Daniel feel all warm and happy inside. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 131 Jesus looked at the picture Daniel was holding. He said, “I love penguins. I especially love rockhopper penguins. Could you please tell me all about your picture?” [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 132 Daniel was so happy to be able to talk about rockhopper penguins. He told Jesus that rockhopper penguins are his favourite because of the tufts of yellow and black feathers that stick out from the sides of their heads. He told Jesus that rockhopper penguins live among rocks so they can’t slide on their bellies like other penguins do. They have to hop from rock to rock. He told Jesus that rockhopper penguins like to eat krill, which is a small shrimp-like animal that lives in the ocean. [ Please contact repository@tyndale.ca for illustrations' details ] [ Page ] 133 Daniel told Jesus all about rockhopper penguins. Daniel didn’t have to wait. It was just the right time to talk about penguins. Jesus loves penguins! Jesus loves Daniel! [ Please contact repository@tyndale.ca for illustration details ] And Jesus loves you too! [ Page ] 134 Notes for Parents and Teachers Some traits of children with Autism Spectrum Disorder (ASD) include Sensory Integration Disorder, General Anxiety Disorder, as well as a tendency to fixate on certain topics or items. Sensory Integration Disorder is addressed in the story by Daniel’s fear of crowds and loud noises. This fear leads to anxiety when Daniel is taken to the library where a large crowd has gathered around Jesus. Daniel’s love of penguins is a fixation which is addressed in this story by Daniel’s desire to speak with his classmates and parents about penguins - even when they are unreceptive. When Daniel meets Jesus, though, he discovers someone who accepts him just as he is, who loves him, and who desires to be in a relationship with him. Parents/teachers are encouraged to share the story of Matthew 19:13-15 with their children, reading from a variety of different versions of the Bible, to impart the message of Jesus’ overwhelming love and acceptance of all of his children. Furthering the Conversation The following are examples of prompting statements that verify what is happening on the page to enhance comprehension of the story. These statements could be followed up with prompting questions to further the conversation and to help the child relate the scenes in the story to instances in his/her own life. It is suggested that the story is read from start to finish first, with engagement with the prompting statements taking place during a subsequent reading to avoid interrupting the flow of the story. Pg. 1 Daniel talks about penguins a lot because penguins make him feel happy. Pg. 2 When dad is busy, it’s not the right time to talk about penguins. Daniel needs to wait until dad is finished. Pg. 3 When mom is busy, it’s not the right time to talk about penguins. Daniel needs to wait until mom is finished. Pg. 4 When Daniel’s friends are busy, it’s not the right time to talk about penguins. Daniel needs to wait until they’re finished. Pg. 5 Daniel drew a rockhopper penguin because they are his favourite type of penguin. He is proud of his picture. Pg. 6 Sarah didn’t want to talk about penguins because she was busy. Daniel needs to wait until Sarah is finished. Pg. 7 Thomas didn’t want to talk about penguins because he was busy. Daniel needs to wait until Thomas is finished. Pg. 8 Daniel packed his picture carefully so it wouldn’t get damaged. He is proud of his picture. Pg. 9 Dad couldn’t talk about penguins because he was busy. Daniel needs to wait until dad is finished. Pg. 10 Mom couldn’t talk about penguins because she was busy. Daniel needs to wait until mom is finished. [ Page ] 135 Pg. 11 Dad and Daniel went to the library for storytime. Daniel likes storytime. Pg. 12 Crowds make Daniel feel nervous. Meeting new people makes Daniel feel afraid. Pg. 13 The noisy crowd makes Daniel feel nervous and afraid. Pg. 14 Jesus was kind and friendly to the children. Pg. 15 Jesus saw Daniel at the back of the crowd. Jesus noticed Daniel. Pg. 16 Jesus touched Daniel on his head, which made Daniel feel happy. Pg. 17 Jesus loves penguins too and wanted to talk about them with Daniel. Pg. 18 Daniel told Jesus all about penguins. Pg. 19 Jesus loves penguins. Jesus loves Daniel. Jesus loves you. After reading this story together, your child may want to draw a picture of something that s/he really loves. This could be an appropriate time for your child to tell you all about the picture, with a reminder that Jesus loves their picture, and Jesus love them too! [ Page ] 136 Appendix K: Final copy of the storybook Jesus Loves Penguins...and Me! [ Please contact repository@tyndale.ca for illustration details ] Written by Heather Malnick Illustrated by John Malnick [ Page ] 137 Jesus Loves Penguins...and Me! This book has been created specifically for primary school-age children with Autism Spectrum Disorder (ASD) using an adaptation of the Social Stories™ and Comic Book Conversations models of communication created by author and educator, Carol Gray. The Social Stories™ model uses a combination of descriptive, directive, perspective, and affirmative sentences. Descriptive sentences provide factual information or statements. Directive sentences suggest an appropriate response or choice in the situation. Perspective sentences explain a person's perception of the situation, describing thoughts, emotions, beliefs, opinions, motivation, and knowledge. Affirmative sentences explain a commonly shared value, opinion, or rule. The Comic Book Conversations model uses font colour to communicate specific emotions and feelings. Green - good ideas and happy thoughts. Red - bad ideas and anger. Blue - sadness or sorrow. Yellow - fear. Black - facts and truth. Orange - questions. Brown - comfortable and cozy emotions. Purple - pride. A combination of colours - confusion Parents/teachers and their children are encouraged to read this book together in a cozy place, perhaps as part of a child's daily routine at home, or weekly routine at church. At the end of each page, the child and parent/teacher are invited to engage in intentional conversation by discussing together possible ways to respond to the situation described on the page. Parents/teachers can initiate the conversation by using prompting statements, examples of which are located at the end of the book. Fun Facts about penguins are located at the end of the book and provide an opportunity for the children to actively participate and respond to the information. The story in this book is a retelling of Jesus welcoming little children to come to him, as found in Matthew 19:13-15, with the prayer that all children - including those with ASD - would know that they are loved, understood, and accepted by Jesus who created them just as they are. Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them. Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." When he had placed his hands on them, he went on from there. Matthew 19:13-15 (NIV) Special thanks is extended to my husband, John, for his thoughtful illustrations, my DMin cohort and thesis advisor at Tyndale Seminary for their feedback and guidance, and our son, Ben, for his love of penguins. [ Page ] 138 Daniel loves penguins. He loves penguin books, penguin games, penguin movies, and penguin toys. Daniel also loves talking about penguins. He loves talking about penguins A LOT. Daniel feels happy when he talks about penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 139 One day, Daniel wanted to tell his dad that rockhopper penguins were his favourite because they have funny tufts of feathers that stick out at the sides of their head, but his dad was busy taking care of his younger brother. Dad told Daniel it wasn't the right time to talk about penguins. This made Daniel feel upset because he loves talking about penguins so much. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to draw a picture about penguins while he waited for his dad to finish. When Daniel finished his drawing, it was the right time to talk about penguins with his dad. Daniel was happy to talk about penguins and his dad was happy to hear about penguins. [ Page ] 140 One day, Daniel wanted to tell his mom that rockhopper penguins live among rocks so they can't slide on their bellies like other penguins do, they have to hop from rock to rock, but she was busy working on the computer. Mom told Daniel it wasn't the right time to talk about penguins. This made Daniel feel upset because he loves talking about penguins so much. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to colour in one of his penguin colouring books while he waited for his mom to finish. When Daniel finished colouring, it was the right time to talk about penguins with his mom. Daniel was happy to talk about penguins and his mom was happy to hear about penguins. [ Page ] 141 One day, Daniel wanted to talk with his friends about how rockhopper penguins like to eat krill, which is a small sea animal, but they were busy working together on a puzzle. They told Daniel it wasn't the right time to talk about penguins. This makes Daniel feel upset because he loves talking about penguins so much. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to read one of his penguin books while he waited for his friends to finish. When Daniel finished his book, it was the right time to talk about penguins with his friends. Daniel was happy to talk about penguins and his friends were happy to hear about penguins. [ Page ] 142 One day at school, Daniel's teacher gave each student a piece of paper and said they could draw a picture of their favourite thing. Daniel drew a picture of his favourite thing. It was a penguin. It was a rockhopper penguin. Daniel was proud of his picture. It made him happy when he looked at it. [ Please contact repository@tyndale.ca for illustration details ] He wanted to show his picture to his friends and tell them all about rockhopper penguins. [ Page ] 143 Daniel showed his picture to his friend, Sarah, and wanted to tell her all about rockhopper penguins. But Sarah was busy playing blocks and said it wasn't the right time to talk about penguins. This made Daniel feel sad. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to join Sarah in playing with the blocks. When they finished playing, then it was the right time to talk about penguins. Daniel was happy to talk about penguins and Sarah was happy to hear about penguins. [ Page ] 144 Daniel then showed his picture to his friend, Thomas, and wanted to tell him all about rockhopper penguins. But Thomas was busy painting and said it wasn't the right time to talk about penguins. This made Daniel feel sad. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to join paint a picture beside Thomas. When they both finished painting, it was the right time to talk about penguins. Daniel was happy to talk about penguins and Thomas was happy to hear about penguins. [ Page ] 145 At the end of the day, when it was time to go home, Daniel carefully packed his picture of the rockhopper penguin in his backpack. He wanted to show his mom and dad. He wanted to tell them all about rockhopper penguins. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 146 When Daniel got home from school, his dad was changing his baby brother's diaper. It was smelly! Daniel showed his dad the picture and started telling him all about rockhopper penguins. Dad said it wasn't the right time to talk about penguins because he was busy and it was too smelly. That made Daniel upset. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to play with his baby brother while dad changed the diaper. When dad was finished, it was the right time to talk about rockhopper penguins. Daniel was happy to talk about penguins, and dad, and the baby, were happy to hear about rockhopper penguins. [ Page ] 147 Daniel's mom was in the living room. She was vacuuming the floor. It was noisy! Daniel showed her his picture and started telling her all about rockhopper penguins. Mom said it wasn't the right time to talk about penguins because she was busy and it was too noisy. That made Daniel angry. [ Please contact repository@tyndale.ca for illustration details ] Daniel decided to move his toys out of the way while mom finished vacuuming. When mom was finished, it was the right time to talk about rockhopper penguins. Daniel was happy to talk about rockhopper penguins, and mom was happy to hear about rockhopper penguins. [ Page ] 148 The next day, Daniel's dad took him to story time at the library. Daniel liked story time. He brought his picture of the rockhopper penguin with him because he loved it so much [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 149 Daniel's dad told him that a man named Jesus was leading story time that day. He had heard about Jesus. He had heard that lots of people had begun following Jesus. Daniel was a little nervous. Crowds of people were sometimes noisy. Meeting new people was sometimes scary. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 150 When they got to the library, Daniel saw lots of children and lots of adults around Jesus. Some were sitting, and some were standing. Some were trying to get closer to Jesus. It was noisy. It was crowded. Daniel stayed at the back of the crowd. He held his picture of the rockhopper penguin close to his chest. He didn't want it to get crushed. [ Please contact repository@tyndale.ca for illustration details ] But dad stayed right beside Daniel and that made Daniel feel safe. [ Page ] 151 Jesus was sitting down in the special story time chair. He was talking to the children. He put his hand on their heads and smiled at them. He looked kind. He looked friendly. Daniel wished he could get closer to Jesus, But it was too noisy. It was too crowded. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 152 Jesus stood up. He looked over the crowd of people and he saw Daniel standing at the back of the room with his dad, holding his picture of the rockhopper penguin close to his chest. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 153 Jesus walked through the crowd and stood right in front of Daniel. He knelt down so Daniel could see his face. Jesus had kind eyes. Jesus had a kind smile. Jesus touched Daniel on the top of his head and it made Daniel feel all warm and happy inside. [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 154 Jesus looked at the picture Daniel was holding. He said, "I love penguins. I especially love rockhopper penguins. Could you please tell me all about rockhopper penguins?" [ Please contact repository@tyndale.ca for illustration details ] [ Page ] 155 Daniel was so happy to be able to talk about rockhopper penguins. He told Jesus that rockhopper penguins are his favourite because of the tufts of feathers that stick out from the sides of their heads. He told Jesus that rockhopper penguins live among rocks so they can't slide on their bellies like other penguins do. They have to hop from rock to rock. He told Jesus that rockhopper penguins like to eat krill, which is a small animal that lives in the sea. [ Please contact repository@tyndale.ca for illustrations' details ] [ Page ] 156 Daniel told Jesus all about rockhopper penguins. Daniel didn't have to wait. It was just the right time to talk about penguins. It's always the right time to talk to Jesus. Jesus loves penguins! Jesus loves Daniel! [ Please contact repository@tyndale.ca for illustration details ] And Jesus loves you too! [ Page ] 157 Fun Facts about Penguins In the story, Daniel shares some fun facts about penguins. Draw a line to match up the fun fact with the correct picture. Rockhopper penguins like to eat krill, which is a small animal that lives in the sea Rockhopper penguins live among the rocks so they can't slide on their bellies. They hop from rock to rock. Rockhopper penguins have funny tufts of feathers that stick out from the sides of their head. [ Please contact repository@tyndale.ca for illustrations' details ] [ Page ] 158 Notes for Parents and Teachers Some traits of children with Autism Spectrum Disorder (ASD) include Sensory Integration Disorder, General Anxiety Disorder, as well as a tendency to fixate on certain topics or items. Sensory Integration Disorder is addressed in the story by Daniel's fear of crowds and loud noises. This fear leads to anxiety when Daniel is taken to the library where a large crowd has gathered around Jesus. Daniel's love of penguins is a fixation which is addressed in this story by Daniel's desire to speak with his classmates and parents about penguins - even when they are unreceptive. When Daniel meets Jesus, though, he discovers someone who accepts him just as he is, who loves him, and who desires to be in a relationship with him. Parents/teachers are encouraged to share the story of Matthew 19:13-15 with their children, reading from a variety of different versions of the Bible, to impart the message of Jesus' overwhelming love and acceptance of all of his children. Furthering the Conversation The following are examples of prompting statements that verify what is happening on the page to enhance comprehension of the story. These statements could be followed up with prompting questions to further the conversation and to help the child relate the scenes in the story to instances in his/her own life. It is suggested that the story is read from start to finish first, with engagement with the prompting statements taking place during a subsequent reading to avoid interrupting the flow of the story. Pg. 1 Daniel talks about penguins a lot because penguins make him feel happy. Do penguins make you happy? Pg. 2 When dad is busy, it's not the right time to talk about penguins. Daniel needs to wait until dad is finished. How do you feel when you have to wait? Pg. 3 When mom is busy, it's not the right time to talk about penguins. Daniel needs to wait until mom is finished. What do you do when you have to wait? Pg. 4 When Daniel's friends are busy, it's not the right time to talk about penguins. Daniel needs to wait until they're finished. Tell me about one of your friends? Pg. 5 Daniel drew a rockhopper penguin because they are his favourite type of penguin. He is proud of his picture. What makes you proud? Pg. 6 Sarah didn't want to talk about penguins because she was busy. Daniel needs to wait until Sarah is finished. Pg. 7 Thomas didn't want to talk about penguins because he was busy. Daniel needs to wait until Thomas is finished. Pg. 8 Daniel packed his picture carefully so it wouldn't get damaged. He is proud of his picture. Why did he pack it up carefully? Pg. 9 Dad couldn't talk about penguins because he was busy. Daniel needs to wait until dad is finished. Pg. 10 Mom couldn't talk about penguins because she was busy. Daniel needs to wait until mom is finished. Pg. 11 Dad and Daniel went to the library for storytime. Daniel likes storytime. Have you ever been to storytime? Pg. 12 Crowds make Daniel feel nervous. Meeting new people makes Daniel feel afraid. What makes you feel nervous or afraid? Pg. 13 The noisy crowd makes Daniel feel nervous and afraid. Pg. 14 Jesus was kind and friendly to the children. Who is your friend? Pg. 15 Jesus saw Daniel at the back of the crowd. Jesus noticed Daniel. Pg. 16 Jesus touched Daniel on his head, which made Daniel feel happy. Who makes you feel happy? Pg. 17 Jesus loves penguins too and wanted to talk about them with Daniel. Pg. 18 Daniel told Jesus all about penguins. Pg. 19 Jesus loves penguins. Jesus loves Daniel. Jesus loves you. After reading this story together, your child may want to draw a picture of something that s/he really loves. This could be an appropriate time for your child to tell you all about the picture, with a reminder that Jesus loves their picture, and Jesus love them tool [ Page ] 159 REFERENCE LIST Acar, Cimon et al. 2016. “Effects of Mother-Delivered Social Stories and Video Modeling in Teaching Social Skills to Children with Autism Spectrum Disorders.” Journal of Special Education (May): 1-12. 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