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Someone hear my voice : one teacher’s experience integrating a child with autism into the regular classroom Chalmers, Karen Louise 1997

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SOMEONE HEAR MY VOICE: ONE TEACHER'S EXPERIENCE INTEGRATING A CHILD WITH AUTISM INTO THE REGULAR CLASSROOM by Karen Louise Chalmers B.Ed., The University of British Columbia, 1992 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Centre for the Study of Curriculum and Instruction) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA February 27, 1997 © Karen Louise Chalmers, 1997 in presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) ABSTRACT Someone Hear My Voice: One teacher's Experience Integrating a Child With Autism Into the Regular Classroom Many teachers are integrating children with autism into the regular classroom. Most feel unqualified and are frustrated by the lack of support. To date, there is little classroom based research that provides practical suggestions or effective practices. The purpose of this study is to explore how I, as a Family Grouping teacher sought to create an inclusive environment for one particular child with autism. I share my frustrations with all the well intentioned advice from the literature on autism and the collaborative team experts that accompanied the child to my room. But the reality was my classroom and my Family Grouping program and the children. With the use of narrative writing I attempt to capture the process of inclusion as lived by all of us. The data for the study consisted of videos, interviews, and journals collected over eighteen months and these provided a basis for the creation of the text. The study contributes to the layers of "voices" of teacher research in the area of inclusion of children with autism into the regular classroom. TABLE OF CONTENTS Page Abstract ii Table of Contents iii Dedication v Acknowledgements vi A SILENT VOICE: a poem vii Prologue Two Voices viii The First Voice viii A New Voice ix Chapter One Arriving At the Question 1 The Question 3 The Discussion 4 The Educational Response 7 Purpose of the Study 9 Method 13 Setting 13 Participants 14 Procedure, Data Collection 14 The Poetry 16 YOUR STORY: a poem 18 Chapter Two An Introduction to Ken 19 AS IF TO SAY: a poem 34 Chapter Three Family Grouping for Ken 35 The Environment 35 The Placement 37 The Philosophy 38 iii Page The Program...The Story 39 To Conclude 51 MUSIC: a p o e m 54 Chapter Four A Clash of Practices: Family Grouping and Behaviourism 55 Behaviourism 55 Family Grouping, an Inclusive Environment 57 The Deliberation 62 In Conclusion 70 INCLUSION: a p o e m 74 Chapter Five Beyond the Autism 75 To Conclude 85 Chapter Six Reflections on the Journey 88 The Writing 88 Ken, A Child 91 Implications 95 T O D A Y : a p o e m 99 References 100 Appendices 107 Appendix A Staff Interview 108 Appendix B Parent Interview 111 Appendix C Letters 113 iv Dedication To My Husband Randy For Your Love and Patience and Encouragement. Y o u a r e t h e W i n d B e n e a t h My W i n g s v Acknowledgements My deepest and sincerest appreciation to: Dr. Jacquelyn Baker-Sennett, my advisor, who was my backbone, my mentor, my supporter; Kathleen O'Sullivan, my teaching partner, my team-mate, who helped me understand my experience, whose voice is all through my writing; Karen Meyer and Tony Clarke, two extraordinary instructors, who agreed to read my work and join my defence committee. I wish to express my gratitude to the little boy in my room and his parents who allowed me into their home and into their lives for a short time. Without their support and encouragement I could not have completed this paper. It is my hope that because of them, regular classroom teachers and other children with autism will enjoy their experiences together. Thank you also to my children, Kimberley, Michael, and Amanda, who are my life. They were so patient and understanding when I spent so much time studying and writing. Finally, to my mom and dad whose example I live by, who have taught me to care about the needs of others, I will always be grateful. vi A Silent Voice My words are not your words, But I want you to hear me. My ways are not your ways, But I want you to understand. I laugh as you laugh I cry as you cry I hurt as you hurt I need as you need, For someone to care. Chalmers, 1995 vii PROLOGUE Two Voices The First Voice Let's beckon all these voices to speak, particularly the silent ones so that they may awaken to the truer sense of teaching that stirs within each of us. (Aoki, 1991, p.l) As a new teacher breaking loose from the walls of the university, filled with the many voices of brilliant theoretical practices, I entered the classroom. I quickly left behind the ideal objectives and came face to face with reality. My position as teacher, "leader," quickly became learner, responder. I came to understand the value of listening to the students, identifying, and providing for their needs. As I listened to these varied voices I realized that, for their sake, I must not remain silent. I must share what I had heard. It is the shared voices of teachers describing their lived experiences that Ted Aoki (1991), in I n s p i r i t i n g C u r r i c u l u m a n d P e d a g o g y : T a l k s to T e a c h e r s , believes is "uncannily correct and elusively true" about teaching. He encourages teachers to break away from unlived attitudes and "move to indwell in the lived place where we experience daily..." and search for the "being of teaching" (p. 2). It was my initial desire, in this paper to describe the place where viii I indwelt daily; to share my teaching experiences, to join the layers of teacher voices, but more particularly to become the voice for a child whose world is very different from most of us. A New Voice Imagine existing in a classroom filled with children's chattering voices, but not one of them is yours. Imagine having something to say, but no means of communicating. Imagine being surrounded by classmates, yet not knowing how to make friends. As teachers do we ignore the unlived voice of society that says this child is mentally retarded, or do we look into the face of the child and attempt to touch his soul? Can we let go of leading and learn to respond? "Such a leading entails at times a letting go that allows a letting be in students' own becoming" (Aoki, 1993, p.266). Can we truly listen to the s i l e n t voice and attempt to join in h i s conversation? Quite possibly there is a new language waiting to be shared. Imagine a whole new layering of voices! ix CHAPTER ONE Arriving at the Question All children grow. That growth is documentable. And in their own time they all bloom. They are neither losers or potentials losers. They are learners. (Goodman, Goodman, & Hood, 1989, p.43) With the acknowledgement that all children can learn and all children are worthy of appropriate education, most children with special needs are integrated/included in regular, mainstream classrooms. Yet, teachers and other educators are struggling with this inclusive practice. There are no clear "how to's" or programs that guarantee success. Time is valuable and students with special needs may consume more teacher time than their classmates. If every child is viewed as an individual with varied and numerous needs, the needs of special children add to the already overwhelming list. Daily, teachers ask themselves, "What programs, styles of teaching, philosophies of education, encourage 'all' children to 'bloom' within our classroom communities?" As I sought to develop a thesis topic; looking for "the" question that would capture my interest, I struggled with the value of what I was about to do. Stenhouse (1985), believes that through our own (teacher) research, 1 teachers can strengthen their judgements and improve their classroom practices (p.4). Traditional researchers see the significance of their studies in terms of its implications for understanding far-ranging repercussions, predicting and improving the future, informing policy, or getting tenure, whereas, when teachers work as researchers the results have direct bearing on classroom practice (Eisenhart & Borko, 1993, p.79). In R e s e a r c h o n T e a c h i n g a n d T e a c h e r R e s e a r c h : I s s u e s t h a t D i v i d e . Cochran-Smith and Lytle (1990), explain that it is "those of us who have daily access, extensive expertise, and have a clear stake in improving classroom practice" (p.2) who should be contributing to the literature on teaching. Aoki (1991) presents the picture of teachers' research (sharing) as contributing to the layers of voices that define the true nature of teaching, while Brown (1992) identifies that sharing also leads us to understanding. The purpose of teacher research, Brown believes, is not to put us in "command of our own or others' educational lives but instead to put us in 'touch' with those lives" (p. 50). I became eager to pose a question that would have meaning to my colleagues at work and at the university. I hoped my research might provide a voice that would improve my practice and the practices of those 2 in similar circumstances; that would put me in "touch" and encourage other teachers to get in "touch" with the experiences we all hope to understand. The recipients of affecting improved teacher practice would then ultimately be the children in our classrooms. I also realized there was need for consideration of a second voice within this study; a silent voice. Keni is a young boy with autism, who is unable to verbally communicate on the simplest level. There are sounds that he makes, but they appear to be void of meaning. Possibly this paper could become a voice for both of us. The Question Considering that teachers continually search for the practices that encourage all children to blossom and that there is little available information on the inclusion of children with autism into the regular classroom, I finally arrived at the question. How does my particular classroom practice facilitate a child with autism? More precisely, how does the Family Grouping philosophy of education provide an inclusive environment for a child with autism? I am asking myself to reflect upon the programs, styles of teaching, and philosophies of Family Grouping 1 Ken's name is a pseudonym to retain his privacy. education that encourage a child with autism to "bloom" within my classroom community? The Discussion Research on children with autism over the past decade has, for the most part, been limited to laboratory and other types of non-classroom studies. There has been an absence of teacher narrative and research. Yet teachers are grappling with the issue of inclusiveness and the common behavioural practices suggested by the research. Because behavioural therapy promotes conformity to the norm and has been successful for many children with autism it is assumed that this method is the most appropriate for classroom instruction. But, does this type of therapy promote inclusion? Biklen (1993), in C o m m u n i c a t i o n U n b o u n d , is concerned that our preconceived ideas about disabilities shape our attitudes towards treatments for children with special needs. Ivar Lovaas is credited with pioneering the behaviour modification program for children with autism. Behaviour modification is a method of creating conditioned responses through reinforcement. For children with autism, parents, caregivers, and therapists work as a team to create a highly structured and consistent learning environment. Tasks are broken 4 down into hierarchical steps, each step preparing the way for the next. This program is very successful, Lovaas argues, if the child begins the treatment at an early age and has 40 hours of one-on-one therapy per week (Lovaas, 1987). The child is rewarded for mastery of each step. The assumption is that with positive reinforcement for requested or required behaviours, the child will respond appropriately. Others point out, however, that the responses or actions are not of the patients devising, they are only what the therapist desires (Martin, 1994; Biklin, 1993). But in his research with controlled and uncontrolled study groups, Lovaas finds that with forty hours a week of behavioural therapy some young children with autism will recover2; will achieve "normal cognitive functioning" (cited in Maurice, 1993, p.62). Since the medical profession generally concludes that approximately 75% of children with autism are mentally retarded, a very concrete behavioural method of modifying autistic behaviours is argued to be the most appropriate form of intervention. This attitude currently prevails among most educators. Those researchers who have sought methods 2The question as to whether a child with autism can ever truly "recover" is under debate. Does the child with autism learn to cope well, is the neurological disorder somehow cured, or is the original diagnosis incorrect? 5 of educating children with autism other than through behavioural methods, such as: the Goodwins (1969), with their Edison Response Environment (a typewriter, projector and programming device in a cubicle); Oppenheim (1974), with facilitated handwriting; Crossley (1994), and Biklen (1993), with facilitated communication; have either been criticized or worse, ignored. Biklen (1993), believes many people with autism are just ordinary people with an inability to express themselves. Such odd mannerisms as poor eye contact may simply be a way of seeing differently. Therefore, he suggests the autistic characteristics be respected and methods of communicating and socializing be encouraged. Oliver Sacks (1987), in his article about Rebecca, a young lady with autism, realizes that his clinical observations are meaningless in their evaluation of her intellectual capacity. He acknowledges that he was blinded by Rebecca's inabilities when he described her as a "broken creature." Once outside the laboratory and in a natural environment Sacks observes Rebecca's very capable nature. It is Rebecca who reminds him that too much attention is given to the defects of patients. It is Rebecca who advises that patients should attend workshops that build on what is 6 intact or preserved. The Educational Response Given the state of our understanding of autism, how does the educational system respond to needs of children with autism who are placed in inclusive classrooms? What types of educational programs should be in place? The Alberta Ministry of Education in 1991 was one of the first government agencies in Canada to respond to the inclusion issue. They produced the document I n t e g r a t i n g E x c e p t i o n a l C h i l d r e n i n t o t h e M a i n s t r e a m . The document states that integration involves the process of inclusion of children with special needs into the regular classroom. The authors believed that children with special needs have the right to participate in the educational, social, and recreational life of the school on equal terms with their "typical" classmates. The philosophy guiding the project is that all children have equal "worth" even though there are certainly individual and different needs. The most enabling (inclusive) environment (classroom) for a child with special needs, according to this document, includes: • access to specialized services and supports when needed; 7 • a developmental^ appropriate curriculum that is adapted, when necessary, to suit the needs of a child with special needs; • collaborative and cooperative activities to encourage interaction with the typical students; • peers used as tutors; • students allowed to progress at their own rate; • individualized instruction; • and parents involved in all stages of the program. It is interesting to note that this type of environment is beneficial for all students, not just the child with special needs. Giangreco, Dennis, Cloninger, Eldeman, & Schattman (1993) in their article titled , " I ' v e C o u n t e d J o n " T r a n s f o r m a t i o n a l E x p e r i e n c e s o f T e a c h e r s E d u c a t i n g S t u d e n t s W i t h D i s a b i l i t i e s , argue for an inclusive process for children with special needs. Their research finds that teachers with positive attitudes who are willing to take responsibility for the children's programs, make a greater effort to include children with special needs in classroom activities (e.g., cooperative learning, group problem solving activities), to use more active, participatory approaches to learning (e.g., hands on activities verse lecture style), and to learn the 8 skills necessary to teach the child. A personal relationship eventually develops with these special children. Historically, children with autism have been educated in self-contained classrooms, and behavioural methods of education were commonplace. How do behavioural practices or can behavioural practices be a part of an inclusive classroom? Now that these children have entered regular classrooms, teachers have had to rethink the educational practices for children with autism. As teachers, I believe we must carefully consider the needs of children with autism. Purpose of the Study The purpose of this study is to contribute to teacher knowledge of inclusive classrooms. Within that framework, I explore how a primary Family Grouping classroom provides an inclusive environment for children with autism, looking specifically at the inclusion process in my classroom for Ken. I include a discussion of the behavioural practices of education for children who were previously confined to special education classes. While this purpose guides my thinking, it needs to be expanded to include my desire to capture the real picture of my classroom. How has the family grouping philosophy promoted development and facilitated 9 inclusion? What are the "lived" experiences of Ken and myself, as well as the others involved in the classroom? A primary Family Grouping classroom typically enrolls a multi-aged group of children ages five to seven years or six to eight years (kindergarten, grade one and grade two or grade one, two and three). The term "family" was originally used in England over 30 years ago to describe a philosophy of teaching for mixed-aged or vertically grouped classes. Educators believed that the "family" influence should continue from home to school; that it was a natural transition for children; that the children within the grouping would develop the characteristics of a family -caring, encouraging, and teaching one another. The proponents of Family Grouping believed that true education involved looking at the whole child, not just intellectual performance. In other words, the social and emotional development of the child was considered to be of prime educational importance. I was attracted to this type of classroom first, because two of my children were fortunate enough to be members of a Family Grouping program. What I witnessed was a community of learners who sincerely cared for each other and who had a passion for learning. When I had the 10 opportunity to take oveT an established program, I was able to experience the benefits first hand. Even my role as teacher expanded. I became an encourager, learner, provider, responder, nurturer, and most importantly, a community member. In most cases the children in a Family Grouping classroom remain with the same teacher for two to three years. Ridgway and Lawton (1965), in F a m i l y G r o u p i n g i n t h e P r i m a r y S c h o o l , believe that new classroom situations every year produce feelings in a child comparable to one's situation of beginning a new job. Remaining with a teacher for a few years, relieves stress and tension for the child in September. This organization also encourages individual children to progress (develop) naturally, at their own rates, during their first years at school. "Children are free to find their own level without restraint, and to fluctuate upwards or downwards according to their own need " (p. 10). These authors strongly emphasize that this system of education gives children a valuable sense of security and stability, and to their teachers a "deeper quality of insight into their development" (p.4). In my Family Grouping classroom each child is on an individualized program that responds to his/her specific needs. The curriculum, 11 therefore, is designed to foster the development of each child and to promote learning. The classroom environment is organized into learning centres such as math, art, drama and writing. Children either choose or are directed to the centres by the teacher. The centres contain educational materials and equipment. For example, in math there are manipulatives, workcards, open-ended activities, games and other tools for the children to use. Throughout the day there are opportunities (and the child is encouraged) to share, discuss and collaborate with peers.3 The thesis research was carried out in my own Family Grouping classroom that was integrating an autistic child, Ken. What evolved was a narrative of my journey; a window for the reader to view my practices as I attempted to create an inclusive environment for this child with autism. The various types of support from the people and staff involved with Ken is described, and my own personal attitudes are explored. The thesis is an attempt to interpret the two year voyage of Ken and myself as I perceived it through my non-autistic eyes. As stated previously, research in this specific area is limited. Most 3These practices are compatible with many theoretical perspectives on child centred learning and constructivist perspectives on child development (Piaget, Vygotsky). Vygotsky (1978) states that children learn through collaboration with others. He believes that social and cognitive development is fostered through interaction with others, and in fact, he claims that all significant development and learning occurs in the context of social interaction. 12 contemporary research'deals with the broader topic of inclusion of all children with special needs, with most of the studies on children with autism conducted in laboratories or other segregated settings. Because contemporary methods of treatment for children with autism are usually behaviourally based, the idea of a Family Grouping classroom as a viable environment has not yet been explored. Methodology I take a narrative approach to this study; a written account of my Family Grouping classroom. Connelly and Clandinin (1991), describe narrative inquiry as stories of experience, lived experiences, that help make meaning out of school situations. It should be evident that the narrative author is both living their story in an "ongoing experimental text" and "telling their story in words as they reflect upon life and explain themselves to others" (p. 128). It is my goal to invite the reader to "participate" in the story, to read and live vicariously within the words; to bring each of us to a greater understanding of what constitutes true inclusion for a child with autism. Sett ing The majority of the study takes place in a large open area, primary 13 classroom that models a Family Grouping philosophy. There are no desks, only tables and chairs in centres set up around the classroom. The area is on the second floor of a seventy year old school building. Outdoors there is an adventure playground specifically designed for primary children. Within the thesis I explain the philosophy, its practices, and its effects on me and Ken. The children view the open area as one community, and every child is considered a valued member. Participants The participants involved in this study are myself and another teacher, one Special Education Assistant, forty-seven primary children, ages five to seven, kindergarten, grade one and grade two. Others involved are Ken's parents; a team of four specialists - hearing and speech, special education consultant, and psychologist; the school administration; and teaching staff. Procedure, Data Collection My primary data sources include: 1. 24 hours of video observations of communicative/social/ inclusive activities, taped opportunistically, 1995-1996; 2. field notes, a personal journal 1994-1996; 14 The videotapes of the classroom present a mirror of my classroom environment; a picture of Ken and the other children as they interacted within this environment, and a view of my teaching practices. Field notes consist of personal journals in which I documented specific social and communicative activities that Ken became involved in, along with any concerns or incidents that I wished to reflect upon. Other data I collected, but found only partially useful was: 1. a home-school journal written by Ken's Special Education Assistant (S.E.A.) and his parents, 1994-1996; 2. interviews with children, staff and Ken's parents, see Appendices A and B.4 3. school records and reports. The home/school journal was originally initiated to develop on-going communication between school and home. It contained 18 months of daily entries by Ken's parents and his Special Education Assistant (S.E.A.), with occasional contributions from myself, my teaching partner, Carol, and Ken's former nanny. Included was such information as, "Ken has had a 4This study is part of a larger project that examines inclusive education practices for children with autism and is currently funded by the Ministry of Education Research Partnership Grant. The interviews with the parents, staff, and children will be used along with narrative responses from some of the 30 teachers, presently integrating children with autism into their regular classrooms, who volunteered to participate in the project by answering a questionnaire. 15 good morning. He was eager to get to school" (parents), or "Ken sat at the computer today for 12 minutes" (S.E.A.). This information gave me a brief overview of Ken's day from the time it began until he went to bed. Interviews with school staff and support staff, specialists, and Ken's parents were conducted to gain an understanding of philosophical or educational attitudes related to the inclusion of Ken into the Family Grouping classroom. The reports from specialists and Individual Education Plans (I.E.P.'s) related the achievable goals for Ken in the classroom. The main intent of this narrative is to identify qualities of the Family Grouping classroom that promote inclusion for a child with autism. It is my hope that it will prove useful to: (1) teachers integrating children with autism into the regular classroom; and (2) specialists and educators training or assisting teachers integrating children with autism into the regular classroom. It is my desire to add to the many layers of voices of teachers "so that we may awaken to the truer sense of teaching" (Aoki, 1991, p. 1). The Poetry Preceding some chapters I have included poetry. Often these poems evolved after long hours of writing when the words on the page began to 16 blurr and the fluency disappeared. In this state it was easier to express my thoughts about Ken and my desires for him in a less formal manner. In the same way that the poetry helped me to rest, reflect, and refocus, it is my hope that it will do the same for the reader. 17 Your Story How can I help you When you turn away from me I can encourage you I can care I can try To become your friend. How can I help you learn When you do not seem to know I can show you I can hope I can try To understand your world. How can I tell your story When the words are not yours I can observe I can imagine I can try To become your voice. Chalmers, 1996 18 CHAPTER TWO An Introduction to Ken On a warm summer day, clothed in only a diaper, 18 month old Ken toddled around his backyard.5 He squealed with delight as his father kicked him a soccer ball. He chased after it as it rolled away, chattering in that magical language of the toddler. Six months later a ball rolling in Ken's direction was ignored, and he turned away as his dad attempted to involve him in some playtime. It was almost as if Ken did not see his dad. The communication between them appeared absent. Ken made no effort, and he seemed to lack a desire to interact. Storytime was no longer a cuddle with mom or dad. Ken now wandered the room as his parents faithfully read to him. Was he listening? Did he understand the words coming from the pages? Were the pictures of interest to him? No one could answer these questions for Ken's parents. At first Ken's parents thought their son was reacting to the birth of a baby brother. His withdrawal was possibly a way of communicating his jealousy or feelings of neglect. This problem they could have dealt with, SThese are scenes taken from a home video of Ken made by the parents and a video made by the Pacific Association for Autistic Citizens in 1992. 19 but nothing prepared them for the diagnosis of autism. The family became determined to find a program that would benefit their son. Many long trips were made to visit clinics in California, books were read, and professional advice was sought. At six years of age Ken entered my regular classroom, making only a few verbal sounds, and he only made eye contact when instructed. Ken's parents had wanted him integrated into the regular classroom, as they believed it was the most appropriate placement for their son. The belief that inclusion into the regular classroom provides the "most enabling environment^" for children with special needs has not always been supported in British Columbia. From 1910 to 1920, Victoria and Vancouver began providing segregated special education programs for children with special needs. Jericho School, built in 1922 for the deaf and blind, established an all day and residential program. In the 1950's grants were given to schools to provide space and equipment to operate special education classes. These programs provided smaller classes for children with special needs, separate from the main stream (some part-time integration into the regular class took place). Home-schooling was also 6The Alberta Response Centre (1991) defines most enabling environment as the least restrictive place, usually the child's community school with appropriate resources. 20 an option for special needs children. Teachers were required with specific university training in Special Education. (Special Education continues to be a separate stream in the Canadian University Teacher Education programs even though regular teachers are now integrating children who were previously the sole responsibility of Special Education.) In the 1970's Learning Assistance Centres in schools were introduced to encourage mainstreaming and to move away from attaching labels to students with special needs, but severely handicapped children continued their education in separate, special programs. With fiscal restraint in the 1980's, many residential facilities for children with special needs were downsized or closed. The result was increased enrollment of children with special needs into regular public school classrooms. At this time as well, parents and special interest groups began to lobby the government, insisting that all children, including children with special needs be educated in regular classroom settings. The government responded. Brian Smith, Minister of Education in British Columbia in 1981, stated: 21 Every child in this province has the right to a free and appropriate education. Those children with special needs have the right to reasonable access to regular schools where it is appropriate for their education. This requires the provision of special services to ensure that access, (as reported in Csapo & Goguen, 1989, p.8) In 1989 the Ministerial Order 150 or the Special Needs Students Order as cited in S t u d e n t s w i t h I n t e l l e c t u a l D i s a b i l i t i e s , from the Ministry of Education draft document (1995), stated: Unless the educational needs of a handicapped student indicate that the student's educational program should be otherwise, a board shall provide that student with an educational program in the classroom where that student is integrated with other students who do not have handicaps, (p.1) Legislation at this time in British Columbia does not mandate integration, but educational policy strongly encourages it. The Human Rights Code of British Columbia as cited by Ken Weber (1994), "promotes placement in the least restrictive environment," which is often defined as the regular classroom. It is very persuasive, but it "does not have the force of law" (p.148). 22 In 1994 our school integrated five children with autism, as well as seven children with other low incidence special needs. Integration of children with special needs would eventually touch each member of the staff. Ken, a child with autism, was to be placed in the Open Area, a large, classroom where I team teach with another teacher, Carol. We had heard comments about Ken the previous year. He was unable to communicate, he was not toilet trained, and he could never be left unsupervised. My partner and I voiced our concerns. Our area was very large and it was difficult to monitor the children's movements at all times. The children quickly learn to be socially/emotionally responsible for themselves and others, and they understand the consequences. I wondered if Ken could make the same connections. Our struggle with the integration process was not philosophical. The Family Grouping program that defines our teaching practice addresses the needs of all children. We simply questioned the suitability of the environment and our abilities to do the best for this particular child. Yet, quite possibly a Family Grouping program could be beneficial for Ken. In a Family Grouping classroom, Ken would remain with the same teacher and most of the same children for two to three years. This would 23 provide him with stability and familiarity of environment and routines. He would be surrounded by children, ages 5-7 years, modelling appropriate/normal developmental behaviours. Because older children model for younger children, in Ken's instance, all the children could assume this role of leadership, and quite possibly Ken might become a model for his younger classmates. Over the years children learn to respect each other, to work cooperatively, to trust and to care for one another. Ken would be accepted by them, as a classmate; just another "kid." Each child in a Family Grouping classroom is placed on an individualized educational program that acknowledges individual developmental trajectories. A 6-year-old, for example, could be working on math with older children but working with 5-year-olds on emergent reading activities. Therefore, Ken's program would address his individual needs, and assessments would reflect individual development. Once the decision was made to place Ken in a Family Grouping classroom, Carol and I approached the administration and requested a written agreement of support. I had made a similar request three years before for another child with special needs and found it to be useful. 24 Having no special "education training, I recognized that I could not manage this process alone. Carol and I went to the principal and asked for his support. We wrote down a few suggestions, and he agreed to all of them. He was as unfamiliar as we were about integration, but he recognized that we valued his involvement. Carol and I needed time to prepare the children and ourselves for Ken's arrival. He began the school year attending only in the afternoons, as our new morning kindergarten children were often a handful in the beginning. When they were settled, Ken would attend in the morning only, then increase to full days when everyone involved felt it was appropriate. The Special Education Assistant? (SEA), arrived first; a young women with no previous experience with autistic children. She appeared eager to learn and did enjoy our class full of energetic children. (She was replaced two weeks later by Rick.) I was used to preparing individualized programs for my students, but even with past integration experiences I still felt quite ignorant about special needs. If all children with special needs had a voice they would remind us that they are first and foremost children and have the same basic needs as typical children. It is our 7An SEA will accompany a child with severe disabilities. The school board decides when an SEA is appropriate and what percentage of time they will spend with the child in the classroom. attitude towards the disabilities that must change. The district resource person, Nell, arrived next, accompanied by the speech and hearing specialists. All seemed eager to get Ken settled into the classroom. Why was I not so eager? I tried to appear prepared but fear of the unknown caused me great hesitation. We met mom and dad casually, and they explained how surprised they were to receive the phone call from the principal. They had not expected the school to accept Ken. They were thrilled because they had heard wonderful things about the school. We kept the conversation light and asked simple questions to help prepare us for the child's arrival. I had been through the integration process before. Three years earlier I had met with Anne's parents. Anne's mother was excited about the prospect of her daughter joining my classroom, however her father was not at all convinced that the regular classroom was the appropriate placement. He took my hand to shake it, looked me straight in the eye and exclaimed, "I want you to know that I am against this!" I was very surprised, and I felt uncomfortable because I wondered if he was right. Was this going to work? Did I know enough to make this integration process work for everyone? 26 Two years later Anne's dad would greet me with tears and hugs. His daughter had made progress that no one thought possible. Had the children and I created an inclusive environment for Anne that was responsible for her development? Would Ken experience the same growth? It was arranged that the S.E.A. would make some home visits before Ken began attending school. This was to help her to see what the programs were like at home. Reflecting back I wish that I had visited as well. It is difficult to truly understand when listening to another's observations. Though Ken received thirty hours a week of applied behavioural intervention from university students, I was completely unfamiliar with their practices. The S.E.A. felt she could continue some of these programs at school, but how could I supervise appropriately if I did not understand? The parents requested that we provide food rewards in response to appropriate behaviours. This concerned me because it was not a practice we used in the classroom, and if the classroom experience was successful, Ken could get very fat! Seriously, though, I wondered if rewards should be part of any inclusive classroom model. To prepare the students for Ken's arrival, we talked at length about autism and about Ken's special needs. At one point when it was 27 mentioned that he was'special, a child commented, "I thought we were all special." (How true! It was a good lesson for me. I think the children were more ready than I was.) We needed to dwell more on the similarities. "He likes to run and jump like you. He loves to have a story read to him, just like you." As teachers we learn a great deal about children through observation and experience, but in the area of special needs it is important to understand the disability, disorder, disfunction or handicap. As I was totally unfamiliar with autism, I recognized that some personal, professional development was required. Autism occurs in approximately "four or five births out of ten thousand" (Fong & Wilgosh, 1992, p.44). It is more prevalent in males than females, and it is considered a lifelong disorder. There are characteristics specific to autism, such as impairments in communication with delay or lack of spoken language, or repetitive use of language; poor eye contact, inability to socialize, a failure to develop appropriate peer relationships, insistence on sameness, and repetitive patterns of behaviour, interests, or activities. These criteria come from the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-28 IV) for the American Psychiatric Association (1994). They are the most widely accepted by school boards for children with autism to qualify for assistance. It is important to note that a child with autism can also be diagnosed as high functioning or low functioning. The later signifies that the child has most, if not all of the characteristics of autism and is less able to cope independently. Ken's fits this category. Kanner (1943), was the first to identify autism as a "psychogenic disorder, a reflection of bad parenting" (Sacks, 1994, p. 107). Although Kanner suggested that children with autism have an "innate inability to form normal social relationships," his observations and reflections led others to support the psychogenic cause (Fong & Wilgosh,1992, p.44). Until 1970, psychologists such as Bruno Bettelheim and the Tinbergens implicated family factors as the cause of autism. But more recently there has been widespread acceptance of neurological factors as the cause. Lovaas (1987), and others have defined autism as a disability of the central nervous system that affects social and language development. The success of their treatments, similar to the behavioral programs first developed by Skinner (1957), helped substantiate this neurological perspective. 29 Even though there is presently support for a neurological basis for autism, I discovered, during my interviews with teachers, that some of the special education and resource teachers continue to question trie home environment and intimate that "these children come from the homes of professional parents," who don't have time for their children. Attitudes that we are just babysitting these children in our classrooms and that we would all be better off if they were in separate classes, still prevails. The most alarming comment I heard while working with Ken, was that "...because this child is obviously mentally retarded, anything we assume he has learned is no more than what a dog could be taught." With statements such as these, I recognized that the struggle was not only to improve the education for children with autism, but to also change professional attitudes. My own classroom was the place where I would start. To begin, the students in my class needed to understand autism. Ken's parents agreed to share their knowledge with the children and to answer any of their questions. Before Ken arrived his parents came into the classroom and spoke to the children about their son. It was a very successful visit. The students asked many questions and mom taught them 30 how to wave hello and what words to use when speaking to him. The day finally arrived for Ken to join our class. The children were excited and I was nervous, very nervous. My partner and I almost held our breaths as he entered the room followed by mom and Nell, the district resource person. I approached Ken, waved and said, "Hello, Ken. I am so glad you came today." He responded with a small wave, but there was no eye contact. He held his mother's hand and carried a brightly coloured balloon in the other. (We came to understand that Ken likes the feel of certain objects and he will stim8 for long periods of time when holding them.) Mom and Nell walked with Ken around the room talking to him about the different centres. At first the children froze in their tracks and stared. Then, as if on cue, they all went back to work only acknowledging Ken when he came near them. When mom and Nell sat at a table Ken wandered off, but very quickly returned. He grabbed at his mom and tried to pull her arm. Then he started crying, no it was more like wailing, almost as if he was in pain. I watched mom. She sat stiff and stared ahead not making any eye contact 8Stimming is a common behaviour of children with autism. It is usually a manner of repeatedly feeling or touching an object/objects. 31 with Ken. At first I did not understand, but then I realized she was ignoring him. I could not believe her control. I could barely take the sobs myself. I just wanted to run over and hug him. But Ken is not like other children in the sense that you can comfort with a hug. After what seemed like an eternity he calmed down and began working with the S.E.A. In a strict behavioural modification program, the goal is to extinguish or remove unacceptable behaviours or mannerisms of the child. This is done more successfully if no attention is provided. For instance, if Ken is crying or running around the room, but is not a danger to himself or others, we are to ignore him, as Ken's mom did as she sat fixed in her chair. When the behaviours are appropriate/acceptable he is to be praised and rewarded. The theory then, is that Ken's positive behaviours will increase and the unwanted behaviours will decrease in frequency. Skinner (1957), in V e r b a l B e h a v i o u r , argued that all of human behaviour is best explained by what he called "operant conditioning." He explained that "operant" is any action that achieves a specific outcome. If the outcome is positive, the frequency of behaviour or action is reinforced and will probably increase; if negative, the action is not reinforced and the frequency of behaviour will decrease. 32 Could I ignore the "tears as mom had done? Would everyday begin with tears? I hoped not! The children were marvelous and quietly continued working at learning centres throughout Ken's first visit, but I am sure they must have wondered about this new addition to our class. Over the next few afternoons mother would leave Ken in the classroom and pretend to leave. Then she would hide in different nooks in the classroom, watching Ken and making sure he was all right. It was not too many days later that I suggested to mom that she need not stay. I had to assure her that Ken would be fine. I remember wondering if I really believed we were prepared to deal with any circumstance. But I knew it was time for us to try. 33 As If To Say Today I tried to understand Why you turned away I played your games I copied what you did And yet You did not look at me You pushed my hand As if to say "I don't want you to play" Then After a little while You came and took my hand The unspoken "Please Come with me" And so I followed And played your game I caught your smile As if to say "I want my way" Chalmers, 1996 34 CHAPTER THREE Family Grouping for Ken The Environment Picture a large, long room, the size of two classrooms, with the sun filtering through large windows at each end. The brightness of the natural light permits many of the fluorescent lights to be left off. The walls are covered with children's work; splashes of colour and creativity abound. There are no desks, just tables of different sizes and shapes, surrounded by small orange chairs. The tables are placed in brightly decorated centres containing cupboards or shelves filled with items for children to explore with. Children are everywhere. Some are lying or sitting on the floor, a few are sitting at tables, and others are standing or walking around the room. All 47 children are playing, working and talking! An explosion of voices comes from one corner of the room where four children are rehearsing their play about a spaceship landing on Mars. They are preparing to perform for their peers. A teacher reminds them to use inside voices. Three adults, two teachers, and one Special Education Assistant, wander around the room talking to the children. One stops to help a child measure a tower he has built with a buddy. Another sits on 35 the floor and encourages a child who is having some difficulty deciding what to do for a research project, while the other gathers a small group to review multiplication tables. Suddenly a black ball of fur darts towards a group of children. It stops for a quick scratch, hops over some papers on the floor, and then finally settles down beside another child for a short nap. Shadow, the class rabbit, is out for her daily "hop." An occasional outburst of laughter is heard as the children chatter freely to their peers, yet a quick view of the room reveals that all are on task; just many different tasks! In one bright corner two children are sitting on stools at a long table and they are surrounded by buckets of Math manipulatives. They have chosen one with pegs and peg boards. Each has a board and they are sharing the pegs. They appear to be concentrating very hard on their project. One speaks to the other, commenting on the good work. As other children walk by they both look up from their boards and watch, then return to their task. To anyone observing these two children nothing appears out of the ordinary, yet one of these children is Ken and he has autism, (video, May, 1996) 36 The Placement At the request of their parents, children have joined this Family Grouping classroom in kindergarten or grade one, as space became available. The expectation of parents and teachers is that the children will continue with the class until they have completed grade two. Parents choose this type of education for their children for a variety of reasons; usually because they believe in and support the Family Grouping philosophy. But this placement was not a choice made by Ken's parents. It was simply the only class available. Looking back, I realize that if there had been another option, Ken would have been placed elsewhere. Simply stated, our classroom environment and practices were not supported by the research on autism. For instance the business of 47 children, the brightness, and the size of the room, are considered to be overstimulating for a child with autism. And even more challenging is the lack of traditional structure and routine. Byrna Siegel (1996), a leading expert on autism, insists that these children need "a highly structured, low-stimulation, confined environment" (p. 220). Though Carol and I have strong beliefs about children and what constitutes a positive learning environment, we 37 acknowledged that Ken would be a challenge. As we accepted Ken into our Family Grouping Classroom, we could only wonder if our practices and beliefs would meet his needs. The Philosophy As Family Grouping teachers, Carol and I believe that our responsibility is to provide an environment where every child has the opportunity to develop to the fullest. Our purpose is to enable children to learn all that they are capable of; to empower them to become life-long learners. Above all else we seek to create a community of learners where a sense of belonging is fostered within every child (Chalmers, K.,et al., 1995). Are we not responsible to provide Ken with the same? Doesn't he have the same rights as any other child? Within this program it is our desire that children learn to make decisions and cope with consequences. We want them to develop a sense of responsibility for individuals, groups, class, school, and community; to become independent workers, making choices for time and space; to develop and express themselves creatively; to become creative thinkers. In addition, we expect that they will be able to reflect on and evaluate their work and behaviour in a positive manner. Questions frequently asked 38 would be: "How was my day?" "How can I improve?" "What might have been a better choice?" "How can I learn from this success or failure?" Finally, we desire that the children function happily within the classroom community (Chalmers, K., et al., 1995). Were these appropriate expectations for Ken, too? Should they be modified or changed to suit his development? Carol and I strongly believed that Ken's needs should direct our decisions. The Program...The Story Those first weeks that Ken was with us were not easy. I remember questioning my teaching abilities on more than one occasion. But because Ken had joined a well established classroom environment (most of the children were returning for a second or third year), I was not alone in helping him adjust to school life. It has always been a joy to watch older children in a Family Grouping take the opportunity to assume the role of helper/teacher with the newcomers. This not only reinforces and helps develop the senior students' own skills, but it provides opportunities for them to assume responsibility, and encourages independence in their own thinking. The modeling of behaviours and skills was also beneficial for the new children 39 as most have learned from the time they were very young, from watching and copying, and role playing. We were told, "Do not expect Ken to be like a normal child. Children with autism do not easily learn from imitation." Imagine our amazement and pleasure when we witnessed during the course of two years, the importance of modeling for Ken. What Ken should do each day was difficult for us to determine. I often caught myself wondering if our expectations were too high for him, particularly when simple things such as choosing where to play or sit were difficult for him at first. The first few pages of my journal are full of questions to myself. "Is integration right for Ken?" "Is the Open Area (our classroom) the best environment for him?" Initially, he just held a balloon or small rubber tire and walked around the room. He did not appear to be noticing what the other children were doing in the centres so Rick, his Special Education Assistant, directed him when necessary. Everyday we establish criteria for the children to follow. We call these "Must Do's" and they often consist of a Math, a Language, and a Written activity related to the child's individual educational program. Eventually we established a criteria list for Ken that was checked daily; the time he sat quietly in a meeting, toileting times and successes, and 40 times spent at the computer or listening centre. This information was very useful and it helped me monitor Ken's development. It was also useful when Rick wrote in the daily "home journal" to Ken's parents. "We (Ken and Rick) sat at the computer for about 1/2 an hour without much fussing. Toileting went very well. No accidents and a few successes." Also added to the check list was how the curriculum was modified to suit Ken's abilities. I recognized that this area needed more attention from us. Developing individual programs for all 47 of our students and creating open-ended activities to include all of their skill levels is difficult, but it was even more of a challenge to accommodate Ken's needs. One week Ken would paint at the easel for long lengths of time and then refuse the next week. Sometimes he would scribble on paper for three seconds then throw the pencil away, while other times he would patiently hold my hand as I wrote stories for him. Carol, Rick, and I probably relied more on our intuition than anything else. How was Ken behaving that day? Who had he worked or played with? How had he responded to that child? What kinds of interruptions had he already experienced (e.g., going out to music or gym)? Could a child do the activity with Ken or was an adult needed? No matter how difficult or frustrating, it was clear to us that 41 Ken's needs and his development (as with any child in our classroom), would dictate what we would encourage him to do or attempt to do. Those times that we watched Ken succeed and show interest in what we had introduced to him, I have to admit, were as exciting as watching a child take their first steps. Time became a precious commodity for me. Knowing that all children deserve time to develop and master the specific goals set for them, I became anxious for Ken. He needed extra time and I was thankful for the two years I would have with him. In a Family Grouping the teachers, support staff, classmates, and environment remain constant for two to three years, so the children become comfortable and time is less of an issue. The pressure to meet the objectives set for Ken was lessened because there was more time for mastery. For example, one goal from Ken's Individual Education Plan (I.E.P) in the second year, to teach Ken to communicate with hand-signs at school and at home, became a focus for all those involved with him. We knew that it would take time and we had to be patient. Our methods of communicating with him had begun with simple two word phrases, progressed to full sentences, and then to hand signs accompanied by language. Computer skills began at this point also. 42 I do not question the value of I.E.P. meetings, particularly as they bring together the people involved in the special needs child's education. What I do wonder though, is if at times parents and teachers feel as though the "experts" make decisions without a true understanding of the home or classroom. And when the classroom goals are not met, how does the teacher feel? A very common complaint I hear from teachers is that it is great to set down the goals but how does one go about achieving them? The "how to's" appear to be missing and this causes great anxiety for teachers. It was frustrating to not have the success we desired in the area of communication, but we remained hopeful and expected that eventually, Ken would model our efforts at communication. At home, the parents have found that the picture cards that Ken has access to were very useful. It was decided that these would be used along with the computer and signing, next year at school. Over the two years we witnessed Ken making choices, dealing with the consequences of these choices, and making decisions about his behaviour. An important aspect of a Family Grouping classroom is the "letting go" of the teacher, allowing the children to take more control of 43 their education. My job" is to facilitate this development. A long time ago I realized the significance of a child taking some responsibility for their own learning. A few children need a gentle nudge or encouragement to take a risk, but once they have tasted the "fruits of their labours" the children seldom look back. A grade seven teacher commented that she could point out the children in her class who had come through a Family Grouping program. "They are not any smarter, they are just excited about learning. They work well independently or cooperatively, and they really care about their classmates." It was difficult for us to allow Ken to make his own choices. We questioned his ability to make the right decisions. But when we finally stopped trying to "make him do," a happier child emerged. Choices, like where to sit in the circle; learning how to care for himself, even if it was just hanging up his coat or putting on his boots; learning to experiment, maybe with colours on a page; these were just some examples of Ken's development. There were many situations in the second year where Ken was self-directed and independent. 44 Ken walked over to a child, Sara, and signed "Music." She did not respond so he moved away to look for Rick. Sarah, realizing that Ken had tried to communicate with her, followed him and explained to Rick, "He seems to want music." She then turned to Ken, signed music and asked, "Do you want to hear music, Ken?" Ken moved directly to the stereo where Sara and he sat down. Rick turned on the music and both children listened for quite some time, (video, June, 1996) And imagine our pleasure and relief as Ken finally began to initiate toileting himself! Ken became more responsible. As his mother was dropping off her younger child downstairs, Ken would make his way upstairs to our classroom. He began eating lunch with Rick in a separate room the first year, then during the second year he joined all the other students in the "noisy, crowded, busy" lunchroom. When instructed, he cleaned up his toys and followed directions given to him. If Ken attempted not to follow the instructions, as any child might do, we were consistent in making sure he followed through with them. Within the family grouping philosophy no matter how immature or delayed the development, or how insignificant the steps may appear to be in the context of the academic world, the acquisition of any skill is 45 celebrated and celebrate we did! I can remember quickly reaching for the video camera to tape Ken singing the same notes he had just played on a harp (a descending scale), just so I could show it to Carol and Rick. I wanted them to share in my excitement. Having three age levels in a Family Grouping class results in a wide range of abilities and development. In such a class a child, even Ken, is likely to find children with similar interests and abilities. Ken watched closely the antics of the younger children; laughing, giggling, and responding to (for Ken, accepting) a hug from the teacher. He enjoyed playing with the math manipulatives with his peers; listening to them count as he stimmed. He seemed comfortable when older children helped him with different tasks and it provided opportunities for these children to perfect their academic, social, and communicative skills. Ken sat beside a classmate, Sammy. They were playing with some large building blocks. Ken was stimming with his and the other child was building a pyramid. Rick suggested that Sammy show Ken how to build a pyramid. The process began with Ken watching then progressed to hand over hand, with Ken finally building on his own. A few times during the process the blocks tumbled to the ground, but the boys eagerly began again, (video, May, 1996) 46 As I watched this' interaction taking place I was happy for both children. Sammy had struggled academically for nearly three years, continually falling behind his peers, and this was a wonderful opportunity for him to shine. Sammy was so pleased with himself that he could not wait to read to Ken later in the day. For Ken, this situation taught him to use the blocks in a manner similar to his peers. Whether playing with the blocks, sitting, or walking with his classmates and running around the gym, Ken often looked like just another kid. Carol, Rick, and I guided and facilitated Ken's development through class meetings, group activities, and individual assistance. We know that curriculum needs to "make sense" to Ken, as well as the other children, and having 40 minute periods where subject matter was not in any way connected, would result in frustration or confusion. Therefore, we choose one theme or study at a time and integrate the different subject areas, modifying the activities to suit the needs of each individual child. In other words, activities are open-ended, and enough time is allowed for completion. It has been my experience that when children are interrupted it is difficult for them to return with the same enthusiasm or interest -and many times they will have forgotten what they were doing! 47 Modeling played a significant role in Ken's development, particularly on the part of Ken's classmates. We observed Ken watching the other children; sometimes briefly and other times for extended periods. Many of the initial autistic characteristics that Ken exhibited in his first year within our class had changed. At first there was almost no eye contact and certainly no facial or physical response to anyone communicating to him. After two years he was smiling and choosing to make eye contact, sometimes adding a touch. At an assembly Ken sat beside a classmate. They smiled at each other and Ken put his hand on the child's leg and left it there until the other child varied his sitting position. Often as Rick read to Ken on the couch, Ken would lean on Rick. Recently, as Ken sat beside a younger playmate, he leaned over and kissed her on the cheek while she was innocently chatting to him. She was delighted and so was I! There were many different activities that I observed and videoed where a child encouraged Ken with, "Come on Ken," or "Good for you!" Encouraging each other and including classmates in activities is emphasized in a Family Grouping classroom. As Ken paced beside a group of children, watching their activity, they allowed him to join in. Whether it was in the gym, as the children were on the climbing apparatus, outside 48 on the tire swing, of playing a parachute game, the children were eager for Ken to participate. A popular dance that the class learned for a performance for the school was the "Macarena." Ken loved to be a part as he could move his hands and body. The first time we tried the dance Ken stood back, but then I stood behind and helped him with the movements. It wasn't long before he was joining in. His movements were not quite the same as the other children, but many of the young children improvised, also, (video, June, 1996) As I watched the video I realized everyone was having great fun. Because the hand movements in the dance are similar to the manner in which Ken "flapped" his hands, I have often wondered if he thought we were learning from him...I do hope so! A common practice within a Family Grouping classroom that Carol and I used everyday was called "scaffolded instruction".9 For Ken it was often incidental, happening when the opportunity presented itself. We also discovered that Ken would respond more positively to a child's 9This is the process where an adult or more capable peer assists a child in carrying out a task beyond his or her capability. The child is given guided instruction then the assistance is slowly withdrawn as the child becomes more capable.(Baker-Sennett& Harrison, 1995) 49 intervention rather than a teacher or adult instructor. A new number set was introduced to Ken by an adult. Two numbers were placed on the table and he was asked to, "Touch 1." "Touch 2." With each correct choice Ken was praised and tickled. If he was incorrect he was simply told, "No." After many wrong choices Ken's demeanor changed. He shook his head when the adult said "No," and he no longer giggled when tickled. In fact, he began to push their hands away. A child that was observing this procedure came to Ken's rescue many times, quietly pointing to the correct number. Ken was becoming discouraged and the expression on his face went beyond frustration. At one point he signed, "More music," but this was ignored. When he glanced over at me with eyes that were sad and pleading, I finally suggested we stop the activity, (video, May, 1996) The next opportunity we used a child to help Ken with the numbers. The activity soon became a game and both children were happy. Following this we often saw Ken with the numbers in hand. He was not sorting or matching but he was touching and exploring, as you would have expected any child's beginning responses to be. Rick was very successful in withdrawing his help as Ken became more able. In simple matters such as cleaning up and putting things away, Rick began by modeling and explaining every step. As the learning process 50 continued Ken would help Rick, then finally Rick only directed Ken verbally, "Put the toys away, Ken. Where should the bucket go?" By the end of the two years, if it was time to go to the washroom, Rick would send Ken totally unaided. We were hesitant at first and often peeked to make sure everything was okay, but Ken knew exactly where to go, what to do, and how to finish (washing his hands). I am sure he thought we were rather silly poking our heads around the door, trying not to be noticed! I believe strongly that the classroom should be a safe environment for children to take risks. I remind the children often that we can all learn from our mistakes. When Ken attempted an activity repeatedly and unsuccessfully, the children encouraged him to continue trying and often helped him be successful. In a Family Grouping classroom the children learn to care about each other. Everyone's successes are celebrated and everyone's failures become educational tools. I could not begin to count the number of times I have observed the children helping Ken or heard them telling him, "Good work, Ken, " or "Try again, Ken. You can do it." To Conclude The children encouraged, helped, modeled, and celebrated Ken's successes, but not to any greater extent then they recognized their other 51 classmates. Though some of Ken's triumph's were things the children had mastered years before, there was still the appreciation of a new skill learned. In this Family Grouping model the children supported their classmates' development and taking part in that development built their own self-esteem. One day a young boy, Harpreet, involved Ken in his play. At first they worked together with the one giving Ken the cubes to stack, then they built towers separately. Both were careful to stack the cubes carefully and the young child praised Ken continually. When the towers of cubes crashed to the floor they both responded with excitement - Ken flapped his hands while the other squealed - then they gathered up the cubes and began again. The young child glanced over at me and exclaimed with great pride, "Did you see what Ken did? He built a tower all by himself." (Personal Journal, October 13,1995) Our Family Grouping classroom was full of energy. Children responded to each other and were interested in learning. Our classroom was noisy, with children sharing and excited about learning. Our classroom was stimulating, with children questioning and making choices about their learning. Our classroom was fun, with children laughing and enjoying their learning. Our classroom was alive, with children learning 52 and taking charge of their education. Ken was a happy family member of this classroom community. While discussing with the children the concept of learning sign language as a possible means of communicating with Ken, one child proudly displayed the signs for "I love you." Everyone wanted to practice. Ken was sitting at the back of the group with another little boy, Tim, and as I watched he turned to Ken and without any prompting signed "I love you." This was a very special moment because it seemed out of character for Tim to be so thoughtful. Yet, as this year progressed this child spent a lot of quality time with Ken. (Personal Journal, September, 1995) 53 Music Music fills your mind With thoughts of which I cannot imagine, Yet you seem to be at peace. Is the world around you less confusing When chords of music Strike perfect harmony? Do you feel more in control As the rhythm and notes of the orchestra Create a beautiful melody? Or does the music simply fill your soul With sounds that satisfy And make the world seem right. Chalmers, 1996 54 CHAPTER FOUR A Clash of Practices: Family Grouping and Behaviourism Behaviourism Behaviour management is a critical precursor to learning, (for children with special needs) When clear expectations for student behaviours and systematic procedures for helping students meet those expectations are lacking, even the best lessons or adaptations lose their effectiveness. Three major components of a behaviour management systems are essential: rules, monitoring, and the use of consequences or other motivational techniques. (Friend, M. & Bursauck, W., 1996, p.224) The research on autism agrees with Friend and Bursauck (1996), that the most effective program for a child with autism uses behaviour management or behavioural modification techniques. Dr. Ivar Lovaas (1981), from the University of California, in T h e Me B o o k , explains how he uses behaviour modification as therapy for children with autism. As stated previously, his belief is that if a child's program involves behaviour modification at high levels of intensity at a young age, many children can recover. Catherine Maurice (1993), in L e t Me H e a r Y o u r V o i c e . credits both her children's recoveries to Dr. Lovaas' practices. Byrna Siegel (1996), a leading expert on autism, insists that a teacher 55 "must have considerable expertise in the application of the principles of behaviour management when working with autistic children" (p.231). When Ken first arrived I was very conscious of my lack of training and education in the area of autism and behaviourism! Ken was very difficult to understand and control. There were times when he was quiet and other times when he vocalized or cried and ran back and forth in the room. There were no clues as to why he behaved as he did. Even when Carol and I watched carefully to see if there were patterns or events that triggered specific behaviours, we found no consistency. At that point we could really only speculate. One afternoon, as Carol was reading a story to the children, Ken sat at the back of the group and soon began to vocalize. He repeated "Ga, ga, ga!" over and over through the entire story. We attempted to ignore the behaviour, but it soon became intolerable. Mary tried patting his arm lightly and sitting very close. Carol's reading voice and Ken's began to battle for first place. The louder he got, the louder she got. The children moved closer to her and never commented on the disturbance. In fact, at the end of the story one child remarked that she liked the different voices Carol had used! We laughed and marvelled at the children's ability to accept Ken's different mannerisms, but we realized that this type of behaviour could not continue if our sanity was to 56 survive.(Personal Journal, September, 1994) The system of rewards was used to acknowledge good behaviour and was also applied when Ken completed an assigned activity correctly. The food rewards were always accompanied by verbal praise. We soon removed the food rewards and used verbal praise with a positive touch, such as a pat on the back. Our dilemma was not so much over the type of reward as to the kinds of activities that were suggested. During a demonstration of his therapy I watched closely, first to try to learn the technique, second to understand its validity and thirdly, but more importantly, to observe Ken's responses. It was clear that this activity needed to be one on one and full concentration was needed by the teacher and student. Imagine trying to do this in a class of 25 or 47! Following this and other demonstrations I ended up with more questions than I started with. Was this type of program or therapy feasible in our Family Grouping classroom? Were Carol, Rick, and I prepared to support this program? Would this program be compatible with an inclusive classroom environment? What was best for Ken? Family Grouping, an Inclusive Environment When asked by a visitor what it was like to have a 57 child with disabilities in her kindergarten class, a young Andrea looked puzzled. The visitor rephrased the question by asking whether the child with disabilities belonged in Andrea's class. Andrea answered, "Of course. He's five, isn't he?" (Salisbury, C , 1993, p. 230) Carol and I recognize that all of the children in our Family Grouping classroom, regardless of age or disability, experience challenges. Some children develop slower or are more advanced physically or intellectually. Some children are socially or emotionally immature or very mature, and some are shy or talkative. To create an inclusive environment for all children, we encourage them to respect, to celebrate each others' diversities, and thus to accept Ken's behaviours as being part of who he is. It is our desire that everyone feel that they are a special part of our classroom community. Inclusion is broadly defined as the placement of a child with special needs into the least restrictive or most enabling environment, usually the regular classroom in the child's community school. True inclusion is different from integration, as the latter can simply denote attendance. The child has a separate program and is usually instructed individually, away from the other children. The child's presence is a "gesture of 58 generosity, tolerance, and or in keeping with some integration policy" (Little et al., 1991, p.2). Inclusion then, is membership in a classroom where there is a sense of real belonging. Both words are often used synonymously in the literature, but I believe there is an actual difference for the child with special needs in a regular classroom. Governments and school boards have wrestled with the inclusion/integration issue for many years, and even though there is limited research on the benefits (Reynolds & Birch, 1988; Ruhl, 1983; Siegel, 1996), it has become a major policy. Many teachers are therefore, in a position where they are fully including/integrating children with special needs into their classrooms. Reactions are varied. "I don't know how." "I lack the special education training I most certainly need." "There isn't enough time and I don't have the energy." "Let's be realistic. It can't possibly work." Questions abound. "How is it done?" "What instructional strategies or practices create an inclusive environment that is most effective?" "Do we expect mastery of skills?" (Teacher Interviews, 1996) Salisbury (1993), concludes that "in inclusive programs, the diverse needs of all children are accommodated to the maximum extent possible within the general education curriculum " (p. 233) and that a collaborative 59 culture fosters a heightened sense of equity among the children. In a discussion one day with some of my students about a cooperative project they were working on, an older child explained, "I will help Ken colour and sign his name." I was amazed that Ken remained with his group and allowed the child to guide him. When the project was presented to the class this same child made sure that Ken stood with their group. (Personal Journal, February, 1995) In another situation the children actually created an activity so that Ken could participate. (They had naturally modified the curriculum.) A group that included Ken, was gathered at a table discussing their project. I came over to talk to them. "Our group can't decide what to do. No one agrees," explained a frustrated Kathy. "Have you considered something that Ken might be able to do?" I asked. "I know, the Macarena. He loves the music!" Kathy was delighted with her choice and the other group members agreed. Decisions were made quickly and the practicing began. Eventually, 3 children danced, accompanied by a drummer and a tambourine player (Ken), at our class family picnic, (video, June, 1996) Researchers on inclusion conclude that the regular classroom teacher needs to encourage and facilitate social situations for children with special needs. (I believe this is a need for all children.) The 60 implication is that social skills are learned through modeling, shaping, coaching, and problem solving, and Gresham (1982), and Fox (1989), suggest the following strategies to increase social interaction: • peer tutoring; • a curriculum that teaches children about disabilities; • peer initiated interventions; non-handicapped children are helped; to interact socially with handicapped children; • 'special friends' programs that pair handicapped and non-handicapped children. Elizabeth sat down beside Ken with a book. She began to read to Ken and ask him where things were in the pictures. Ken pointed and flapped his hands with excitement. Soon, a small group of children gathered around the couple to listen to the story as well. When the story finished everyone moved away from Ken, but he picked the book up and began looking at the pages himself, (video, June, 1996) Little, Williams, Ward, Fraser, and Churchill (1991), suggest that teachers need to change the way they teach (education as they claim it used to be), and the way they work with all children. Their formula for an inclusive classroom includes individualized instruction, an altered pace, 61 personalized learning goals, cooperative teaming, and peer and cross-age tutoring with mixed-ability grouping. I was very comfortable reading this article as these practices are foundational to Family Grouping. If our program had the basics for inclusion then would it not be appropriate for Ken? The Deliberation None of these researchers mentioned any behavioural techniques for the inclusive classroom. In fact, there is little discussion of behaviourism in conjunction with the topic of inclusion in the literature. These two views and how they, or if they are compatible caused me great concern and many sleepless nights. Norman Kunc (1993), suggests that if therapy (for any disability) is to be effective there needs to be choices for the child, so they feel like they have some control; it needs to be fun (success is built in), so there is pleasure attached to the activity; and there needs to be relevance; so the activity makes sense to the child. He argues that we should concentrate more on what improves the child's quality of life, such as relationships with family and friends. 62 Ken's first gym class was overwhelming. The noise and the business were very disturbing to him. He flapped his hands, vocalized continually, and wandered around the room with a very worried look on his face. I had two choices: have Rick remove him and teach ball skills in the hall, to avoid the overstimulation of the gym, or make the activity inclusive. I chose the latter. First, I distracted him and threw him a ball, then asked him to return it to me. He was delighted with this play, flapping his hands and jumping with excitement. This activity continued for approximately fifteen minutes with children throwing and catching the ball with Ken. Ken was not the only one who was excited! (Personal Journal, September, 1994) Gym classes eventually became very enjoyable for Ken. He was able to physically interact with the children and do many of the same activities. Basketball appeared to be his favourite. He could make as many baskets as he missed! This particular activity he could also play out on the playground. One recess, Ken was pacing outside near the basketball hoop, watching older boys play. He flapped his hands as the ball bounced and followed the movements of the boys. When one boy threw the ball to Ken, he threw it at the basket. The second time the ball was thrown to him, he passed it back, (video, February, 1996) 63 Ken was able to transfer the skills he had learned in the gym (He started playing basketball at home with his dad.), to outside and these boys were clearly interested in including Ken in their play. They looked beyond what Ken could not do to what he was able to do. Ken discovered, as he chose to physically interact with other children, that there was relevance and fun. The class was playing in the Adventure Playground behind the school. The children swirling on the tire swing caught Ken's interest. He paced back and forth beside the swing then climbed on with the other children. The air was soon filled with sounds of pleasure, (video, June, 1996) The rewards for Ken in these situations seem to be social acceptance and interaction. There was no food and few verbal acknowledgments; just laughter and smiles and children having fun! One conclusion we did arrive at early on, was that we could no longer allow tantrum disturbances in the classroom; we could no longer ignore the outbursts as was required in a behavioural management program. The third day following Rick's arrival, from the time 64 Ken arrived "until recess he cried and ran back and forth, climbing up and jumping off of the furniture. It was impossible to ignore! Many of the younger children burst into tears at the slightest provocation. They did not understand that the atmosphere in the room was creating tension for everyone. I could feel my chest tightening and both Carol and I were ready to give up. At recess I suggested to the principal that it was his turn to teach the class! (Personal Journal, September, 1994) It was necessary for us to find a better solution for everyone involved. Eventually we discovered that music had a very soothing effect on Ken and once settled at the Listening Centre with headphones on (eliminating the classroom sounds), he became quiet and calm. At first Ken would only sit for seconds at this centre, but soon it became his favourite activity and his time there increased rapidly. He often walked over, sat down, turned on the cassette player, then came and get one of us if the tape required rewinding. He was making an independent choice for himself. We were encouraged! Donna Williams, an adult with autism, in her book "Nobody. Nowhere." narrates an experience she had while visiting a school for children with autism. A child with no communication skills was very upset and the teachers were ignoring the crying. Donna sat by the child, sang a simple 65 song, and tapped the rhythm on the child's arm. The child very quickly settled down. The next day the child became upset again and Donna noticed the child began tapping the rhythm herself. The music or beat acted as a release for the child. Russell Martin's "Out of Silence." shares that Ian, a young boy with autism, has a strong attraction to music and suggests it may be "due to a brain stem that filters few or even any sounds-richly patterned chords and melodies far more vivid, more immediate perhaps, for Ian than for me" (p.213). And even sounds like garage doors opening and closing were like music for Ian, comprised of cadences, variations and repetitions. During those times that music did not help, Ken was removed to a kitchen beside our classroom and placed on a chair for a "time-out" (usually a last resort in a behaviour program). He remained there until he was in control. The chair was most effective and Ken usually sat for only a short period of time. Instead of picking up his things, Ken threw them in the air. Rick was firm and insisted that Ken tidy up his toys. Ken began to cry and when he finished he ran away screaming. Rick quickly got hold of him, took him to the kitchen, and sat him in a chair. "You will sit there until you stop crying." (Rick had 66 followed this routine before.) Ken sat in the chair and cried for about a minute, then just as quickly a calmness came over him, the tears stopped and he returned to the classroom, (video, January, 1996) On occasion, Ken would begin crying as he re-entered the classroom, but Rick would remove him again until he was quiet. We did not establish this routine for Ken until the second year. It has been most effective and his parents have also found that this is an effective practice at home. We typically did not know the stimulus for Ken's outbursts or had any warning and therefore we felt we needed to be very consistent with any consequence. I believe that this has been very useful in helping Ken understand inappropriate behaviour. We have also recognized its effectiveness by the reduction in Ken's outbursts or tantrums. Christy Magnusen (1996), suggests that there are behavioural management options, from the least restrictive to the most restrictive, for disruptive behaviours within the classroom. The first option is to ignore the behaviour with the possibility of redirecting as we did with the music. A second choice might be to give a prompt such as, "Hands quiet, Ken." The next level involves acknowledging the positive or quiet 67 behaviours, usually withTa reward. Contingencies such as, "If you come and sit down, I will allow you to play later," are next. The fifth option is token economy where there is a delayed reinforcement. For example, if Ken sits in a chair for a specified time, he is rewarded after the specified time. "If you sit quietly for 5 minutes and complete your work, you may have a ..." The final choice is removal from the negative situation until the child is ready to return and use appropriate behaviour, which has been most effective with Ken. Removal from the classroom or to a designated place within the room is not an uncommon practice for teachers to use with any child in the class. I use it if a child has not heeded their warnings or if they have been fighting with another child. My desire is to teach children to monitor their own behaviour; to understand that there will be consequences to their choices. The punishment may be behavioural but the child has a choice and can control the outcome. In the beginning Carol, Rick, or myself attempted to help Ken complete a small motor activity such as painting, scribbling on paper, or stacking blocks. These times were often unsuccessful. Ken would sit for about 10 seconds then try to get up and move away. We would insist that 68 he finish but often it took many attempts to keep him on task. We recognized that there was a battle of wills going on and he was winning. At a workshop with Gateway of Richmond B.C. who promote behavioural techniques, we were informed that we needed to first of all have a designated work area away from the business of the room for Ken's activities; preferably a desk so that we could position ourselves to block Ken's attempts to escape. One teacher said she used the cloakroom. Then, we needed to have a reward system for any successes. Red flags were beginning to wave and when it was suggested that we use music only as a reward (because he loved it), I became very concerned. We were now talking of exclusion and imagine only allowing music as a reward! Ken would perform his activities away from the other children and he would remain until he responded correctly. Was this important for Ken? Was I ignoring his needs because of other's biases? What about his choices? Were there some compromises to make? At home the parents have a special room and behavioural therapists spend long hours each day with Ken. The therapy was initially modeled after the Lovaas program. The parents tried this program after many attempts to find help for their child. It has been quite successful for 69 them and when questioned about the fact that we structure our classroom differently from home, Ken's parents said that they were delighted with the differences. They were enthusiastic about the many opportunities for Ken to learn appropriate social and communicative skills at school. In Conclusion It was the first day of school and Ken's second year in our Family Grouping classroom. The children rushed in after the morning bell, chattering all at once. There was great excitement in the air and I was overwhelmed with hugs and gifts of flowers. As one child walked away Ken came over and put his arms around me. It was a real hug! Tears came to my eyes as I squeezed him and told him how glad I was to see him. I did wonder if mom might have prodded him, but she was busy talking to Rick. He had imitated the other children's behaviour by choice with no tangible reward offered to him. He had taken the initiative himself.(Personal Journal, September, 1995) Carol and I struggled with many issues as Ken began his elementary school education. His autism was something we could not ignore, and yet we wondered how it should define his education. At home, for 30 hours a week, he experiences behaviour based programs specifically designed for children with autism. Our school resource person supports these practices and suggested that Ken follow the same routines at school as he 70 does at home. Workshops I "attended and the research I read supported behaviour modification and rigid routines. And yet... my instincts, right or wrong, told me that true inclusion meant creating an environment that responded to Ken, to any child. As a teacher in a Family Grouping classroom I have learned that children blossom in environments that allow for a shared understanding, collaboration and opportunities to have some control over their own learning. Ken was not any different. He was first of all a child and his disability was only a part of who he really was. What were the real issues? I constantly had to refocus on Ken and his needs, not mine or the experts. But who was I to think that I could truly understand what those needs were? It was Ken who gave me the confidence to go with my instincts, to speak on his behalf, to become a voice for him. It is important to interject here how important attitude is towards the child with a disability, whether one follows a behavioural or inclusive program within the classroom. Do children see first the disability or do they see another child? As adults do we first see the disability or do we first see a child? As teachers do we model for our children an inclusive 71 atmosphere and attitude? Are our classrooms full of children or are they full of regular children and the disabled child ! In the Article "I've Counted Jon": Transformational Experiences of Teachers Educating Students with Disabilities (1993). a teacher discovers that she has spent a good portion of the year counting the typical children plus Jon. It is not until she recognizes what she has been doing that her attitude towards including children with special needs changes. Carol, Rick, and I realized that if we structured a strict behavioural program for Ken we would be removing his opportunities to develop friendships with his peers; to make choices; to be involved in collaborative learning; and to become independent. Without the stimulus of tangible "rewards," Ken chose to pick up books, sit at the Listening Centre, work on the computer, and sign "Music" when he wanted the stereo on. He learned to sit quietly during meetings and was as noisy as the other children in the gym or playground. He played games with other children and giggled with delight. He made friends and they enjoyed playing with him. At the same time when he desired to be alone he walked away. During long performances in the gym with an audience of over 500 children, he quietly watched operas, musicals, orchestras, and dramas, and 72 often did not even stim with his hands. I believe strongly that the opportunity to be "included" in a classroom community has been more effective than any reward or extinguishing program we could have established. One day as dad was dropping Ken off he commented as he looked around the room, "This is the best place for Ken." I was so encouraged. I had struggled with the traditional views of effective behavioural programs for children with autism and the more contemporary views of inclusion, but the reassurances from dad (and many times from Ken's mom who makes a spectacular chocolate pie), gave Carol, Rick and I the confidence to try different things; to choose to create the most inclusive environment we could for their son. It was a special June day in our class. The children had brought their favourite games, divided into playing groups, then circulated individually to other games, as they chose to. I followed Ken closely. He began with one group and the children encouraged him to participate, then he moved on. By the end of the day he had sat by every game and his peers had made provisions for him to participate. (Personal Journal, June, 1996) 73 Inclusion Masses of dark brown curls Surround his cherub face As he climbs and jumps And runs to his special place. He giggles as he's tickled And laughs as he runs away "Come and see what we're doing, We'd really like you to play." He seldom looks right at us He seems to stare straight through. "Would you like to join us? We'd like to play with you." His hands are never still He likes to feel and touch. "Please come and join us, We'd like that very much." He cannot find the words To tell us yes or no. "I'm sure you really want to, I am your friend, you know." "I think I'll take you by the hand And show you how to play. I'm sure you will enjoy it, Come play with us today!" Chalmers, 1996 74 CHAPTER FIVE Beyond the Autism The gym is full of laughter and shrieks of pleasure. Children are everywhere, climbing ladders, jumping off boxes, balancing on beams, swinging on ropes, and tumbling on mats. Ken wanders around at first, flapping his hands and making small noises. He wanders near the ladder and watches a child climb. He walks over and begins to do the same, but notices a swinging rope and stops to observe the motion. He hesitates at the foot of the ladder, then begins to climb, halting at the second rung and climbing back down. He paces back and forth, near the ladder until a classmate takes his hand and guides him up the ladder. From that point on Ken enjoyed climbing ladders by himself or with his peers, (video, January, 1996) When Ken entered our classroom for the first time, I was very conscious of his autism. In fact that was all I saw initially. He had been diagnosed by top international and provincial specialists in the field. The criteria used is listed in The Manual of Policies. Procedures and Guidelines (1995), from the British Columbia Ministry of Education. It defines autism as a syndrome characterized by a marked disorder of communication and a severe disturbance of intellectual, emotional, and behavioural development. When Ken came to our class he appeared as 'a 75 page out of the Manual.' But over time things changed, and the importance of the "list" faded. The Manual states that a child with autism exhibit impairments in communication with delay or lack of spoken language, or repetitive use of language. Ken initially vocalized and repeated, "ga, ga." Over the two years he added sounds like "na, na," "huh, huh," "ee, ee," and a sing-song "gaaa, gaaa." Certainly Ken displayed delayed language development but was it interconnected with his ability to comprehend or communicate as the Manual suggested? During Ken's first weeks at school we assumed, because of the literature on autism, that Ken understood very little of what we communicated to him. Following the arrival of Ken's new S.E.A., Rick, two changes were made. No more food rewards and no more broken English. Mary, Ken's first S.E.A., had used language such as "Good sit, Ken. Good catch, Ken," but Rick recognized immediately that Ken comprehended, and felt it was important to model the language he would hear daily in the classroom. Byrna Siegel (1996) suggests that the language spoken by a teacher should be "conversationally natural" (p.268), similar to how one would communicate with a non-autistic child of the 76 same chronological age. Ken had great difficulty communicating his needs at first, but he soon learned to take our hands and lead and then use our hands to point. I believe his tantrums were also a form of communicating to us. It was obvious that this was an area we needed to explore. Was his development in this area delayed or did he simply not possess the tools for success? It was imperative that we provide those tools. The quandary we had was which method of communication would be the most appropriate for him to learn. Another criteria described in the ministry documents is poor eye contact or an unwillingness to make eye contact. There was little eye contact from Ken at first. He appeared to either purposefully avoid our eyes or to gaze right through us. Carol and I were pleased that his eye contact increased over time. We also observed Ken more recently, watching or focusing his attention on his classmates and their activities. As well, he began to initiate eye contact with other children, bending his head and moving towards them, by looking straight into their eyes with a smile. One day, Ken sat at the computer with a 77 classmate April,' following her instructions. At first, he watched the keyboard and monitor but as the game continued he began to glance over at April, seemingly waiting for her approval. When she did not acknowledge him Ken bent his head in front of her face, smiled and looked directly at her. She smiled, then they both scratched their chins! (video, April, 1996) The Manual suggests that children with autism have an inability to socialize and fail to develop appropriate peer relationships. We were careful at first as the other children attempted to interact with Ken. We reminded them that he needed lots of "personal space." In the beginning Ken would accompany a child if asked or sit with a child for short periods of time. Playing (simple activities such as throwing and catching a ball) together was usually initiated by the other child. If Ken wished to be alone he would push the child away or move. During the end of the second year Ken began to take a child's or adult's hand as a cue to join his activity (often throwing and dropping small objects as he sat on the floor). His stimming activities became games he could play with us or the other children! As we entered the gym for an assembly one day a child from another class who had been with Ken 78 the previbusfyear waved her hand in the air and amidst the chatter of 550 children she cried, "Hi, Ken!". He responded by leaving our line, walking over and sitting beside her. She put her arm around him and he remained there throughout the entire assembly. A long lasting friendship had been made. (Personal Journal, June, 1996) Reading and looking at books together was a wonderful social activity for Ken. He could sit beside a child and mirror their behaviour or the child could read to Ken and point out things in the picture. By the end of his second year a child or teacher could ask, "Where is the princess?" and Ken could point correctly at the picture. Rick was sitting on the couch with Ken beside him. Rick was reading the story as Ken quietly leaned against him. At the end of the page Rick instructed, "Turn the page, Ken," and he complied, (video, January, 1996) Often children would join Ken and the reader or ask to read to Ken, resulting in an activity that became enjoyable and beneficial for everyone. I have often wondered how one can measure social development in a clinical environment. "Set-up" situations tend to lack the choice and the collaboration necessary to create appropriate stimulus. It was clear from 79 our observations of Ken within'our classroom setting that peers were important to him, and there were specific children he regularily sat or played with. We were reminded often of the importance of finding a communication tool for Ken, but the children appeared to communicate without words. Ken's inability to talk did not prevent him from forming relationships. When I asked a child about Ken, he responded, "Ken can't talk, but I know what he wants." Insistence on sameness is also common to children with autism. Changes in classroom routines for Ken became less difficult for him over time. At first there was some self-biting and crying, but eventually he came to accept transitions easily. The difficulties continued to arise when furniture was changed or holidays were approaching. (Most children become anxious at these times as they anticipate special things.) In these instances I agreed with the literature that his outbursts were signs of anxiety. Ken was communicating, but he did not have the words to explain his feelings. Creating an environment where Ken felt safe resulted in his coping better with change. A few days before a family picnic and performance at the end of the year, we had to move furniture in the classroom and position a stage for 80 the children to perform.1" Ken became so involved in practicing his group's dance that he did not react to the changes. Even his computer had been moved, yet once we showed him where it was he sat himself down and began to play a game. During the performance the children's parents and younger siblings comprised the audience. Ken sat quietly with his group until it was their turn, then he performed beautifully. To finish, the entire class became a choir. Ken was not the only choir member who did not sing! According to the Manual children with autism have repetitive patterns of behaviour, interests or activities. Ken flapped his hands, played with small objects - continually picking them up and dropping them, and rubbed smooth or rough objects repeatedly.10 He spent long periods of time watching the fish in the fish tank. But as he listened to music with headphones on, the stimming ceased. Donna Williams, an author with autism, suggests that music replaces the need to stim. The sense of touch is "dropped" for the sense of hearing. Temple Grandin, a university professor with autism calls this replacement desensitizing. As the second year came to a close I recognized that Ken was lOPerseveration: persistent repetition of a motor or verbal response. 81 stimming with his favourite objects at every opportunity. At first, I was very bothered by this and did not understand that with all the changes in routine during the closing weeks - assemblies, furniture moves, clean-up, special celebrations, changes in schedules etc. - the stimming was a release for him. It was a very real need. Instead of tantrumming or biting he had chosen to stim. He was taking control. I came to understand this need during one of the assemblies that was long and over-stimulating. Ken sat for awhile then stood up and attempted to leave. I sat him on my knee and began tapping a rhythm on his leg. He took my hands and held them tightly. When I stopped he began to move my hands himself. He clearly needed the stim to help him self-control. He remained quiet through the rest of the assembly. (Personal Journal, June, 1996) The concept that Ken could be mentally retarded, not just developmentally delayed did not sit easy with us. Yet much of the literature supports this conclusion. Siegel (1996), suggests that 80% of children with autism have some degree of mental retardation (p. 11). Does this mean that Ken's future development is limited; could he only hope to achieve at a certain level? What we were witnessing told us otherwise. There were too many incidences where Ken revealed abilities to play 82 and engage in complex problem solving. One day when Rick was absent a substitute S.E.A. helped with Ken. He ran her ragged. I was amazed at how he tested her and played with her. As Ken attempted to leave the classroom (not a normal practice) he turned and stopped, looked at the S.E.A., then when she made eye contact, he ran out of the room and down the hall. Needless to say she chased after him. He repeated the chase three more times. I am sure he thought this was a great game! (Personal Journal, February, 1996) Clinical testing of Ken by professionals had revealed that he was developmentally a one to two year old, but in the classroom he was clearly capable of higher reasoning and greater understanding. If he picked up something he should not or climbed on a counter, simply calling his name was enough for him to respond appropriately. He understood what we wanted him to do. Instructions, such as, "Go sit down with the group, • Ken," or "Ken, pick up your toys and put them away," were easily followed. One day when the children were told it was time for music, we looked for Ken in the line-up. He was missing! We finally found him after searching frantically, sitting all by himself in the music room. Ken had understood that it was time to go to music, that he must leave the room, and then sit 83 on the floor and wait for the teacher. Operating a tape machine or pushing buttons to make the computer respond became simple tasks for Ken. Carol and I recognized that his inability to speak or print was not a measure of his comprehension. In the second year, as we made a more focussed attempt at teaching Ken different means of communicating, it was our hope that his true abilities would be revealed. Ken doesn't have a communication path. Once he knows or develops one, who knows what...He obviously has a lot of mannerisms and things which show he probably has some nervous problems, but that doesn't mean that everything in his brain isn't working. (Parent Interview, June, 1996) Martin (1994), in Out of Silence, makes reference to Philip Lieberman's theories that speech deficits are associated with inabilities to control or to regulate movements of the hand and fingers, but are not linked to cognitive development. Lieberman suggests that the left temporal lobe of the brain that controls motor skills is somehow linked to the area that manages speech (p.227). Therefore, Ken's inability to put language together contributes to his inability to print, and the inability to 84 speak or put pencil to paper does not reflect poor cognitive skills or reasoning abilities. I was encouraged after reading Martin's book as we witnessed incidents daily that supported Ken's ability to understand us. Dad commented that "He (Ken) has a look about him that there is a lot of intelligence." (Parent interview, June, 1996) Martin believes the success of facilitated communication supports Lieberman's theory. Children and adults who were once thought to be mentally challenged were now able to communicate, with help on the computer. To Conclude Autism has, and will continue to be redefined as we learn more about the disorder. For the present the DSM-IV and the The Manual of Policies. Procedures and Guidelines (1995). provide us with the most current criteria list. Labeling Ken as autistic enables him and other children with autism, to receive the support they need in the classroom. The real question, though, is what should I do with this information as a teacher? Another question that nags at me is what might the list look like for a normal 5 or 6 year old child...Inability to make one's self understood all the time...Avoids eye contact when uncomfortable or being 85 disciplined ...Limited ability to socialize without appropriate modeling...Throws tantrums when activities are interrupted...Watches same video or plays same game and insists the same story be read to them repeatedly. It seems obvious to me that all children arrive with a "list" and as a teacher I must decide how significant it really is to the education of a child in my room. Do I focus on the autism or the child? For every new child entering my Family Grouping classroom, the first months are challenging. It is a period of discovery for both myself and the child. Each watches the other carefully. For young children it can be an apprehensive and sometimes frightening time. For me it is a time to "take time," to gain the trust of the children and not rush into too many new things at once. But for Carol and I the time of discovery and learning about Ken lasted the entire two years. We constantly questioned what was appropriate for his educational program and what we interpreted as his needs. We continually searched for what constituted true inclusion for this child with autism, Ken. Though the policy in B.C. is to place children with autism in regular classrooms, some teachers are against this practice and insist that the ministry of education provide separate classes for "these" children 86 because "they are disruptive" and "take too much teacher time...time from the other children" (Teacher Interviews, June, 1996). Resource people and other support staff attempt to make inclusion successful but at times insist on programs that exclude, rather than include the child. Yet, as teachers, if it is our intent to create the best learning environment for every child, does this not include children with special needs? I believe a Family Grouping classroom provides for the differing needs of children as the philosophy encourages the "inclusion" of all children. Personal note to the reader: It is unlikely that Ken will ever acquire language skills. Research states that there will be little or no development in this area if a child with autism is not using some language by the age of six. Therefore, finding a tool for Ken to use to communicate is vital for his future. By June of the final year Ken was toilet trained. This allowed the family so much more freedom, but it is important to accept that Ken will probably need continuing support. 87 " CHAPTER SIX Reflections of the Journey The Writing A lived experience does not confront me as something perceived or represented; it is not given to me, but the reality of lived experience is there-for-me because I have reflexive awareness of it, because I possess it immediately as belonging to me in some sense. Only in thought does it become objective. (Dilthey, 1985, cited in Van Manen, 1990, p.5) When I first began this study I could only imagine the outcome. I revisited the question constantly and wondered if I was being realistic. (How does the Family Grouping philosophy of education provide an inclusive environment for a child with autism?) I chuckled at my boldness. I was assuming that Family Grouping would be inclusive and could not imagine asking "if" it might. My intent was to become a voice; to use my lived experience to add to the layers of teacher research and to possibly improve classroom life for children with autism. I also had lofty ideals of becoming the voice for the child at the centre of my study. How would I report the lived experience? Van Manen (1990) suggests that writers should describe 88 their experience as they have lived it; describe the incident from inside; focus on particular examples, those that stand out for their vividness; attend to how the body feels, use one's senses; and avoid flowery terminology (pp.64, 65). But before I could be a speaker (writer), I needed "to be a true listener, able to attune to the deep tonalities of language that normally fall out of our accustomed range of hearing, able to listen to the way the things of the world speak to us" (p.111). With Ken, because he could not speak, I needed to listen to his s/7ent voice. I chose to use a narrative style of writing and as I began the process a strong passion grew. I wanted to be a story teller. I had an overwhelming desire to so entirely capture the reader that they would become active participants in my experience. In my classroom I had often held the children's interest with stories of my past or experiences my own children had been involved in, and there were times that I just made up the story as I went along. The children would sit quietly, completely wrapped up in the language. Interruptions, like recess bells brought moans and anxious desires for completion upon returning to the classroom. Could I do the same on paper? Would my penned words be as effective? The job of gathering or collecting the data for the study was 89 immense. Interpreting it seemed beyond my realm of experience and at times it was discouraging. Certain incidents occurred when the battery went dead on the video camera or I ran out of film. The week my advisor came in to video, Ken was not feeling well and he just wanted to be left alone. Some of the teachers I chose to interview were very critical of inclusion, particularly for Ken, and other teachers with special needs children in their classes were having a very difficult time, feeling very much alone. Yet there was much that I knew I could use, that had meaning and as the pieces came together I realized that a story was emerging. The value of my research became clearer as the months progressed. I recognized that I, the writer, was being transformed. Who I was at the beginning of the research was slowly changing. Not only was my teacher knowledge improving but I was becoming more sensitive and gaining more understanding of what it meant for a child with autism to "live" within a Family Grouping classroom. My support of inclusion was also becoming stronger; I was experiencing the benefits through Ken. More significantly, Ken's autism began to fade into the background as my attitude towards his disability changed. I had been naive to think that I could speak for Ken, but I discovered an new "voice" was developing in me. 90 Writing has never been easy for me. I would rather write poetry, yet the process of discovery encouraged me to continue. My questions made me probe deeper; the answers were the carrot to keep me moving. My failures caused me to reflect; "I am not incompetent. I am a learner." I sometimes wonder if Ken's early experiences with inclusion paralleled my own experiences. Our successes were a stimulus that inspired me to write; my rewards were those small steps Ken made for all children with autism. Ken, a Child Initially coming to school did not appear easy for Ken. Yet, once surrounded by busy, noisy peers he became interested. As he watched their learning he was stimulated to learn as well. When confronted by "no's" he heard his peers encouraging him to try again and his successes brought cheers and exclamations of uninhibited joy from all of us. Instead of thinking "I'm not good enough," or "I can't do it," Ken's self-confidence grew. Even his strong defiance or resistance to what we asked him to do revealed an important strength of character. Ken became a contributing member of our classroom community. He taught us that each one of us has value; that we all have something to give; that each of us is special. 91 Ken remained in my Family Grouping classroom for two years. His presence caused me to reflect on my practice and my beliefs. I realized, more than ever before, how necessary it was for me, as a teacher, to respond to the needs of the individual child and to mold my program to fit that child. It was important that I view Ken as a child. He had the same physical needs; he needed to feel safe and secure; and he needed friends and family to love and accept him as he was, so that he would feel good about himself and find fulfilment in life. Ken's autism did not change his basic needs, it simply meant that the process of filling these needs was sometimes different or took longer to achieve. Norman Kunc (1993) in the video, The Other Side of Therapy: Disability. Normalcy, and the Tyranny of Rehabilitation, implies that children with special needs are not broken. They do not need fixing. Their disability suggests they are different, they are diverse, but they are not deficient or less worthy than a "normal" child. His argument is that we are so busy trying to rehabilitate or make the child appear less disabled, that we do not see the person (child). We assume that the child cannot make a contribution to society if they are disabled, therefore we must make them normal first. Kunc insists that given the proper supports a 92 disabled person, like Stephen Hawking, will make important contributions to society and if the rules of a game like baseball are modified then someone like him, with cerebral palsy, can play. In our Family Grouping classroom Ken was treated "differently" by Carol, Rick, and myself, during those initial months. We spent many hours questioning and evaluating his program. We were continually conscious of his presence in the room, and we worried about what he was doing or where he might be playing. We insisted he work on activities that would help him become like the other children or so we presumed to believe. But he fought against us and we felt incompetent. Many instances made us question our expectations for Ken. One morning we observed the resource teacher asking Ken to clap his hands, touch his nose...insisting that he look at her. He kept signing, "Hungry," asking for his reward. Another day Ken scribbled on a page that I had asked him to write on, then he threw the crayons in the air and ran from me crying. Why were we asking him to perform these "duties"? Did they have meaning to Ken? Did they have value for him? What were our reasons for insisting that Ken do these things? When we finally let go of our insecurities and released Ken to be a 93 "child" in our class, we watched a beautiful flower emerge. The video spanned eighteen months and Ken's body language was often more revealing than the events taking place. He began school as a frightened and tense little boy, appearing very uncomfortable with his new role as an elementary school student. Slowly he blossomed into a cheerful and contented young boy. Though he was still unable to speak and he could not write his name, he made many friends, he enjoyed listening to music, was able to sink baskets on the court, and he danced the "Macarena" to his heart's content. If we were to measure Ken's success in terms of academic achievement, as is common in most educational environments, he would have failed, or rather we would have failed him. If we had chosen a behavioural program and measured his success by the number of specific levels he had mastered, Ken would have made some improvements in matching, sorting, and picture identification. Even with these gains I still believe we, as teachers, would have failed him. In our Family Grouping environment, because we acknowledge the whole child (social, emotional, aesthetic, physical and intellectual development), and concentrate on her/his individual needs, mastery or 94 achievement is not an issue. We focus on the "Can do's," not the defects or inabilities. That is not to say that skills are not taught and learned, it is that the emphasis is on the process of learning not the end (measurable) product. Implications One day a child in my class arrived at school in the morning carrying a rather large wasps' nest, perfectly intact. The entire class was interested. The questioning, researching, and reporting began. The day, week, and month took on a whole new and unexpected look. An entire unit of study was developed with direction coming from the children. As teachers we call these special times, "teachable moments." When properly captured these moments can often lead to the most exciting and inspiring times for both student and teacher. Ken's unexpected arrival in my classroom was my "teachable moment." My goals for the next two years entirely changed as I began walking down a very different path. The decision to chronicle Ken's and my experiences was not because of incredible success. In fact, in the beginning there were more failures and frustrations. But there was something captivating about this young boy with autism. 95 Ken and I, together, ventured into a new educational experience. The discovery that our Family Grouping class provided an inclusive environment for Ken, was exciting. Here was a program with philosophies and practices that was a model for an inclusive environment. The parents supported our decision not to follow a behavioural therapy program for Ken as they recognized the social and communicative benefits of our classroom. They also realized that behaviourism would exclude Ken from his classmates and their activities. The current government policy is to include children with special needs in the regular classroom in their community schools, rather than in separate classes, segregated from other children. Teachers have questioned the appropriateness of this move, most often because of the absence of training and support. As well, each year we have witnessed the decrease of services to teachers and their students with special needs due to a withdrawal of funding from the government, and in many instances teachers are being left to cope on their own. Inclusion is not always a choice for the classroom teacher, but how inclusive the classroom becomes is. 96 In the end the mind of the teacher is the most powerful influence in any classroom. What she/he knows and believes about children will create the atmosphere affecting their learning. (Alice Yardley, Foundation Document, 1990) As I read and reread my account of the two years as Ken's teacher, I discovered that having influence in the educational environment was becoming of secondary importance to me. What I truly desired was to seek meaning in my experience. Did my story open up a "deepened and more reflective understanding" of inclusion for Ken or any other child with autism (Van Manen, 1990, p.86)? Would the reader share in my revelations? Ken is an adorable little boy who can make you laugh and cry. He loves to listen to music and play with his toys. He jumps and runs and giggles when he is chased. Computer games, operas and string concerts can capture his attention for long periods of time. He likes to hold a friend's hand as they walk together, and he cuddles up to mom as she helps him put on his shoes. Ken also has autism and it has been his autism that has directed his path in life. I was well aware that I wanted Ken to have the most amazing 97 experience he could possibly have in my classroom. In my dreams he began talking and revealing great abilities. Initially, I wished to be his "miracle teacher," but these were my needs not his. It would have been easy to write a quantitative account, using standardized testing, measuring and comparing Ken's progress against a set of norms as a specialist might, but I knew there was so much more to Ken than the clinical criteria associated with autism. As Ken's story evolved I began to rediscover his rights as a child. Ken has the right to an education that recognizes and adapts to his needs. Ken has the right to a program that responds to his likes, gives him choices, is relevant, and fun. Ken has the right to be a valued member of a classroom community. I was humbled as I realized the significance of the part I played in Ken assuming his rights; the part that all teachers play as educators. We make the final choices about our classroom practice. Do we have the courage and the integrity to change the way teaching has been done, to change our classroom environments, to change our expectations and create a formula for success, for a child with special needs? How we choose to respond and how inclusive our classroom environment or practices become, is ultimately, up to us. 98 Today Today I made a choice To play with you. Today I had fun Running in the gym. Today I knew I needed some time to myself. Today I went to music And danced. 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The Man Who Mistook His Wife for a Hat-and other clinical tales. New York, N.Y: Harper Perennial. Salisbury, C L (1993). Mainstreaming during the early childhood years, Teaching of Exceptional Children. Schon, D.A. (1983). The Reflective Practitioner. In M. Cochran & S.L. Lytle (Eds). Research on teaching and teacher research: The issues that divide. Educational Researcher. 19(2). 2-11. Schrankler, W. (1976). Family groupings and the affective domain. Elementary School Journal. 76, 432-439. Seip, J. (1995). Autism Understanding and Awareness. Richmond, B.C: Gateway Provincial Resource Program. Shea, T.M., & Bauer, A.M. (1991). Parents and Teachers Of Children With Exceptionalities. Boston, Mass: Allyn and Bacon. Skinner, B.F. (1957). Verbal Behaviour. New York, N.Y: Appleton-Century, Crofts. Stainback, S., Stainback, W., Courtnage, L., & Jaben, T. (1985). Facilitating mainstreaming by modifying the mainstream. Exceptional Children. 52, 144-152. Siegel, B. (1996). The world of the autistic child. New York, N.Y: Oxford University Press. Stenhouse, L., Rudduck, J., & Hopkins, D. (Eds.) (1985). Research as a Basis for Teaching: Readings from the Work of Lawrence Stenhouse. Portsmith, N.H: Heineman. Taylor, S.J., & Searl, S.J. (1987). The disabled in America: History, policy and trends. In Education Response Centre. (1991). Integrating Exceptional Students into the Mainstream. Alberta Education. 105 Tinbergen, E., & Tinbergen, N., (1983). Autistic Children: New Hope for a Cure. Boston; Mass: Allen & Unwin. van Manen, Max, (1994). Researching Lived Experiences. London, Ont: The Allthouse Press Waite, M. (1977). A comparative of family grouping, vertical grouping and the integrated day. (S.S.T.A. Research Centre Report No. 43), Regina, Canada: Saskatchewan School Trustees Association Research Centre. Wang, M.C., & Birch, J.W. (1984). Effective special education in regular classes. Exceptional Children. 50(5). 343-349. Weber, Ken (1994). Special Education in Canadian Schools. Thornhill, Ontario: Highland Press. Williams, Donna (1991). Nobody Nowhere. Toronto, Canada: Doubleday Canada. Williams, Donna (1994). Somebody Somewhere. Toronto, Canada: Doubleday Canada. Willis, Scott (1994). Making schools more inclusive, Curriculum Update. Alexandria, VA: Association for Supervision and Curriculum Development. Yell, M.L. (1995). Least restrictive environment, inclusion, and students with disabilities: a legal analysis. The Journal of Special Education. 28(4), 389-404. 106 APPENDICES 107 APPENDIX A STAFF INTERVIEW 108 STAFF INTERVIEW 1. What is your profession? 2. How many years of experience do you have in this profession? 3. What other related experience do you have? 4. What is your background, if any in Special education? 5. What kind of Professional Development have you taken in Special Education? (Have you received any training in autism? Have you done any reading on autism?) 6. Have you previously been involved in the integration of children with special needs? Children with autism? 7. Do you agree with the policy of integrating children with autism into the regular classroom? Why? Why not? What do you like about it? What do you not like about it? 8. What types of support are necessary to aid the integration process? 9. True or False? I feel many teachers are experiencing "burn-out" as a result of integrating an autistic child into their classrooms. (Explain) 10. What makes a successful Special Needs Assistant for a child with autism? Do you have these supports? 11. What is your involvement with K? 12. Would you be willing to integrate K into your classroom? (Ask if applicable) 13. How would you describe the classroom environment that K is in? 14. How do you think the Family Grouping program meets or does not meet the needs of the child with autism? What do you see is working or not working for K in the classroom? 109 15. What milestones or breakthroughs, if any, have you observed with K? 16. If K were your child would you be satisfied with the inclusion process? 17. How do you feel the children and parents of the other children in the classroom respond to K being integrated into their classroom? 18. In your opinion how are the non-disabled children in this classroom affected by the integration process? 19. Researchers argue that between 75% and 90% of children with autism are mentally retarded. What sort of evidence in your day to day interactions with K do you see to support or not support this claim. 20. Has your attitude or opinions about K's integration changed over the last two years? If so how and why? 21. Do you believe your style of teaching and your classroom environment would (choose one) a) facilitates b) does not facilitate the social and intellectual development of an autistic child. 22. Please describe your teaching style and environment and make any comments you would like to make about its appropriateness. 110 APPENDIX B PARENT INTERVIEW 1 1 1 INTERVIEW QUESTIONS FOR THE PARENTS OF KEN 1. Initially, what were your thoughts on integrating K into a regular classroom? 2. Initially, what were your expectations of the school? (i.e. social, intellectual expectations) Have these changed? 3. What were the challenges you encountered prior to K being integrated? 4. What was your reaction to K's placement into the open area? 5. I know you have been very involved with behavioural training. a) How did you get involved? b) Are you happy with your decision? c) As you know, classroom practice is very different from traditional behavioural programs. How do you feel about the lack of consistency between home and school programs? 6. How do you see the Family Grouping program at Queen Mary working for K? When you observe the classroom environment, what do you see facilitates K's needs? What has worked well? What has not worked well? 7. What support from the school district for K e.g., specialists, administrators has been appropriate? What has not? 8. Over the last year and a half what have been your disappointments? What have been the milestones for you and K? 9. How have the other parents responded to you and to K? 10. The research literature suggests that most children with autism are retarded. What are your thoughts about this conclusion? 11. Where do you hope K's next placement will be? What kind of environment, teacher etc? What about high school? 12. What improvements need to be made to the process of integration? 112 APPENDIX LETTERS 113 page 2 I have read the preceding page and am willing to participate in the study, Someone Hear My Voice: One Teachers Experience Integrating Children With Autism Into the Regular Classroom. I give permission to use my responses from this interview in graduate research. agree do not agree signature date 115 page 2 We have read the preceding page and are willing to participate in this study. We also give permission for Ken to be videotaped at school. We give consent for ourselves and to participate in the study described above. We do not give consent for ourselves and to participate in the study described above. parent signatures date 117 


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