To Live and Learn with Neurological Challenges Life Histories of Two Teenagers in an Educative Community
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TO LIVE AND LEARN WITH NEUROLOGICAL CHALLENGES LIFE HISTORIES OF TWO TEENAGERS IN AN EDUCATIVE COMMUNITY by Howard M. Bloom A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Graduate Department of Adult Education and Counselling Psychology Ontario Institute for Studies in Education University of Toronto © Copyright by Howard M. Bloom (2010) TO LIVE AND LEARN WITH NEUROLOGICAL CHALLENGES LIFE HISTORIES OF TWO TEENAGERS IN AN EDUCATIVE COMMUNITY Doctor of Philosophy 2010 Howard M.Bloom Department of Adult Education and Counselling Psychology University of Toronto Abstract The research, on which this account is based, took place within the context of Blooming Acres, my home, and the learning community that I co-founded with my wife Sherri-Ann. In the first chapters, I tell the story of how I came to home-educate learners with complex special needs at my farm north of Toronto, Canada. I describe the neurological disorders that the children in my care are diagnosed with and map out the main literature that guides how I think about and practice education. The aim of this section is to paint a picture of the context in which the research takes place and describe my role in this community. The second section consists of my research with two of the children who lived and learned at Blooming Acres. This includes their stories as told by them, their parent(s), and the educators at Blooming Acres. As I juxtaposed the life experiences of these learners with each other, and wove together aspects of these stories, significant themes emerged relating to their academic and medical histories, as well as their social, extracurricular, and family life, and finally, their experience at Blooming Acres. I employed a life history methodology; one that honours the meaning and knowledge that exists in the storied lives of individuals. As I applied this methodology and engaged in the storied lives of these learners I ii learned more about what it is like to live and learn with neurological disorders. Four major themes emerged. The first, Pathology for Support / Support for Pathology, relates to learning issues, referral, assessment, diagnosis, medications and “school battles”. Second, Parent Stress includes behavioural issues, judgment, stressful calls from teachers and principals and school failure. Third, Oasis Teachers / Mentors is an expression of care, support, social competence, self-esteem and relationships. Finally, Strengths and Coping is a culmination of issues such as advocacy for support, strategies for success, identifying and coping with stress, understanding diagnosis and becoming well. These emergent themes are articulated within the context of neurology and school failure (risk) and the context of transformation and getting well (resilience). This work contributes to parenting, education, social work, disabilities, medical and risk / resiliency literature. iii Acknowledgements This thesis is possible because of community. To my wife and partner Sherri-Ann, this dream came true with your love, bravery, hard work and encouragement. Jakob and Noah, you are our sunshine. I especially want to thank J. Gary Knowles, my thesis supervisor. You listened to and supported my ideas. This gave me courage in practice and the inspiration to research and write. To the friends who read the chapters and helped with edits, thank you. To the staff who worked alongside us as we lived and learned with neurology, you made it all possible. Special thanks go out to Jennifer K. LeBaron. You embarked on this journey with us on day one, and you photographed our first years. I appreciate your willingness to share, and use with permission, the beautiful images that illustrate Chapter 7. Steve Caston, you are a remarkable artist, thank you for your friendship and for the painting that inspired the cover art. And most importantly, to the children who live(d) and learn(ed) at Blooming Acres, and to the hundreds I’ve met and worked with along the way here – from you I’ve learned the most. iv This work is dedicated to the original three…the story continues. v Table of Contents 1 ∞ 3 Abstract .........................................................................ii Acknowledgements .......................................................vi Section One: Context Chapter 1 Sowing the Seeds .....................................................................2 Chapter 2 How We Came to Home-educate, Ideas and Practice ..............9 Chapter 3 Why Conduct Research? .........................................................19 Chapter 4 An Overview of Pathologies ....................................................23 Chapter 5 Education and Pedagogy .........................................................34 Chapter 6 Storied Lives, A Life History Perspective .................................43 Section Two: Lives Chapter 7 Adam ......................................................................................69 Chapter 8 Bobby .....................................................................................130 Chapter 9 Analysis of Emergent Themes ..................................................166 Section Three: Where are we now? Where do we go from here? Chapter 10 A Postscript to Analysis, Letters to Stakeholders Who Matter ..191 Chapter 11 A Friendly Visitor ....................................................................202 vi Artifacts, Tables and Illustrations 1 ∞ 3 Artifact 1.1 - Blooming Acres (H. Bloom) .......................................6 Table 7.1 - Adam’s Personal Curriculum ........................................81 Artifact 7.1 - Adam’s Student Journal, Day One ...............................83 Artifact 7.2 - Adam’s Student Journal, Immersed in Books ...............86 Artifact 7.3 - Adam’s Student Journal, Turkey Slaughter ...................88 1 ∞ 3 Artifact 7.4 - Adam’s Student Journal, Balloon Propelled Lego Car ...101 Artifact 7.5 - Adam’s Student Journal, Poetry Writing ......................105 Artifact 7.6 - Adam’s Student Journal, Gecko Hideout .....................107 Artifact 7.7 - Adam’s Student Journal Initiative and Independence ...108 Artifact 7.8 - Adam’s Student Journal, Fossil Hunting ......................111 Artifact 8.1 - Letter From Grade One Teacher ..................................136 Artifact 8.2 - Teacher Referral ...........................................................136 Artifact 8.3 - Teacher Observation ....................................................139 Artifact 8.4 - Bobby in Kindergarten ................................................140 Artifact 8.5 - Bobby’s Medical History .............................................141 Artifact 8.6 - Bobby’s History, Parent’s Perspective ...........................144 Artifact 8.7 - Bobby in Grade One ..................................................146 Artifact 8.8 - Bobby’s Grade One Report Card .................................150 Artifact 8.9 - Bobby, A Psychologist’s Report ....................................152 Artifact 8.10 - Bobby at Pottery .........................................................160 Artifact 8.11 - Bobby at Pottery 2 ......................................................161 Artifact 8.12 - Bobby Age 15, At Blooming Acres ..............................164 Illustration 9.1 - Concept Map ..............................................................168 Artifact 11.1 - Child and Family Services Act .....................................204 Artifact 11.2 - Blooming Acres Snow Valley Lodge .............................217 vii SECTION ONE: Context 1 Chapter 1 Sowing the Seeds These research stories take place within the context of Blooming Acres, my home, and the learning community that I co-founded with my wife Sherri-Ann. In the first chapters, I tell the story of how I came to home-educate learners with complex special needs at my farm north of Toronto, Canada. I describe the neurological disorders that the children in my care are diagnosed with and map out the main literature that guides how I think about and practice education. The aim of this section is to paint the picture of the context my research takes place in, and my role in this community. The second section consists of my research with two of the children who lived and learned at Blooming Acres. This includes their stories as told by them, their parents, and the educators at Blooming Acres. As I juxtapose the life experiences of these learners with each other, and weave together aspects of these stories, significant themes emerged that relate to their academic and medical histories, as well as their social, extracurricular, and family life, and finally, their experience at Blooming Acres. I employed a life history methodology; one that honours the meaning and knowledge that exists in the storied lives of individuals. As I apply this methodology and engage in the storied lives of these learners, I 2 3 hope to learn more about and share the stories of what it is like to live and learn with neurological disorders. At Blooming Acres farm, there are ten learners who reside along with my family, as part of our home-education community. In 2005 we opened Blooming Acres Snow Valley Lodge (on two acres of land, 20 minutes away), which supports seven individuals. The children who live and learn with us are diagnosed with a variety of neurological disorders, including: Autism spectrum disorders, Tourette Syndrome (TS), Attention Deficit (Hyperactivity) Disorder (AD(H)D), Obsessive Compulsive Disorder (OCD), Learning Disabilities (LD), and Anxiety