TO LIVE AND LEARN WITH NEUROLOGICAL - T-Space

232 Pages·2010·2.43 MB·English

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
Te 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 frst 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. Te 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.
Te second section consists of my research with two of the children
who lived and learned at Blooming Acres. Tis 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, signifcant themes emerged
relating to their academic and medical histories, as well as their social,
extracurricular, and family life, and fnally, 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. Te frst, 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. Tird, 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. Tese emergent themes
are articulated within the context of neurology and school failure (risk)
and the context of transformation and getting well (resilience). Tis
work contributes to parenting, education, social work, disabilities,
medical and risk / resiliency literature.
iii
Acknowledgements
Tis 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. Tis 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 staf 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 frst 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.
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Tis 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 Temes ..................................................166
Section Tree: 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
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SECTION ONE:
Context
1
Chapter 1
Sowing the Seeds
Tese 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 frst 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. Te aim of this
section is to paint the picture of the context my research takes place in,
and my role in this community.
Te second section consists of my research with two of the children
who lived and learned at Blooming Acres. Tis 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, signifcant themes emerged
that relate to their academic and medical histories, as well as their
social, extracurricular, and family life, and fnally, 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. Te children who
live and learn with us are diagnosed with a variety of neurological
disorders, including: Autism spectrum disorders, Tourette Syndrome
(TS), Attention Defcit (Hyperactivity) Disorder (AD(H)D), Obsessive
Compulsive Disorder (OCD), Learning Disabilities (LD), and Anxiety
disorders. To educate our learners, we have chosen to adopt a “home
education” model, which emphasizes learning in the context of our
home community. Including both staf and clients, we now have
anywhere from sixteen to twenty-four individuals at the farm at any
given time. Our Snow Valley Lodge adds an additional ffteen people
to our community.
In 1997 my wife, Sherri-Ann, and I moved from our condominium
in downtown Toronto and bought a farm near Barrie. From 1992 to
2005 we spent our summers co-directing a summer recreational camp
in Muskoka for children with neurological disorders. Sherri-Ann and I
founded the camp with a colleague. Summer camp is in my soul.
Since the age of six years I have spent each of my summers at recreational
camp settings. For a month in August I slept in wood A-frame cabins
and I canoed and sailed, water-skied and swam. We played feld sports
and had “theme days”. My memories of camp are all pleasant – camp
was a great place to come of age. At camp there was a certain amount