Contents (Tentative)
Introduction
The Research Process
A Snapshot of the Families
Difference, Intersectionality, and Critical Disability Studies (DisCrit)
Co-Advocacy
Cases
1.?Patty: ?Even Though She?s His Mom, I Will Never Leave Him?
Desperately Seeking Support: First Encounters with Professionals and Organizations
Reasons to Advocate: Minding the Gaps in Every Setting
A Community That Excludes
Enacting Advocacy across Multiple Settings
?People Appeared Out of Nowhere? The Helpers, Supporters and Co-Constructors
Goals for The Future: ?Nobody Does It Like You?
?Let?s Resolve?: Patty?s Self-Reflections as an Advocate
Following Up: Observing Patty in Action
Post-COVID Update
2.?Jenny: ?This is a Family?
Not Your Typical Medical Foster Home: ?This Is a Big Family Setting?
Views from the Intersection: Disability, Mental Health, Puberty and Transition
Understanding the Foster Care Linkage: Who are the Allies?
Nora Revealed: Advocacy and Self-Advocacy in Action
Post-COVID Frustrations: ?It Tore her Apart?
Reflections of a Caregiver Advocate
3.?Rhonda: ?I Am Her Voice?: Fighting for Respect and a Normalized Adolescence
?We Just Have to Wait and See?
High School and Beyond: The IEP??Just a Piece of Paper?
Countering Negativity and Poor Communication
Sisters and Supporters
Being a Teenager: Creating a Social Life
Senior Year Advocacy: Let Me Be Brave in My Attempt
The COVID-19 Pandemic: Virtual Learning as a ?Blessing? and a Revelation
Finding Light at the End of the Tunnel
Rhonda?s Reflections: The Meaning of Advocacy
4.?Myra: ?I Came With My Books as My Honor and My Weaponry?
Identity and Disability Intersections
A ?Top-Tier Advocate?
Advocating for Identification and Services
An Early Transition
Advocacy Then and Now: Change within the Status Quo
5.?Marie: ?I Want Him to Have a Voice?
A Twice-Exceptional Family
?You Have to Meet this Mom!? Mother Love, Intuition and Seeing the Whole Child
Enacting Advocacy across Multiple Environments
?She?s my Backup?: The Supporters, Helpers and Co-Constructors
The Community Filling in the Gaps
COVID Follow Up: Restrictions, Racism and ?Regular?
?I?m Not Afraid of Anything?: Reflecting on Her Role as an Advocate
6.?Ana: ?Whatever You Need, I?m On Your Team?
Social and Cultural Capital: ?I Know How to Speak to Them?
Enacting Advocacy: ?Autism is an Expensive Disorder?
Navigating Community and Social Experiences
Co-Advocacy: Making the Ideal a Reality
Following up with the Outcomes of Advocacy
?My Fear Is Coming Out of It?: COVID-19 and Challenges of Social Distancing
?I Wouldn?t Have it Any Other Way?: Ana?s Self-Reflections as an Advocate
7.?Linda: ?As a Mom, You Have Those Feelings, and You Do What You Have to Do?
Engaging With Professionals Before and After Delivery: ?It Should be More Reassuring?
Dismissals and Misunderstandings: ?Give Him the Diagnosis That Was Appropriate?
Advocating Within the Family: Acceptance, Compromising, and Support
Tony?s Emerging Adolescence: Fitting in or Not?
Enacting Advocacy
Knowing Who to Lean on: The Allies of Advocacy
Post-COVID: ?We?ve Really Seen Him Flourish, Believe It or Not, in This Time?
Reflections: ?The Next Day is a New Day?
8.?Sonia and Zoe: ?Different Isn?t the End of the World?
?Hooray, Giselle?!
Strong Family Bonds, Strong Family Roles
Advocacy Allies: Helpers and Supporters Who Made a Difference
Different Contexts, Different Advocates: The Power of Social Perceptions
Observation: ?There?s No Place Like That Place?
COVID Follow-Up: ?We Got to Do Better?
Advocacy Reflections
9.?Carlos and Betty: ?It?s Not About Me . . . It?s About Someone Who Needs Me?
Advocating Before Birth: ?He?s Our Son, Of Course We Are Keeping Him?
Identity, Culture and Disability: A Family Perspective
Advocating within the Family: Intersections of Disability, Culture, and Socio-Economic Status
Unexpected Exclusions within the Disability Community
Allies of Advocacy: ?Building Community?
Observation: ?Since I know Him Better Than They Do?
COVID-19 and Updates
Advocacy Reflections
10.?Althea: ?We Are Warriors in Ourselves?
Intersections and Perceptions: Family, Identity and Disability
First Encounters with Professionals: Dismissal without Diagnosis
Advocating Across Contexts: Disability and Susceptibility
Allies of Advocacy
Returning to the Observation
COVID-19 and Follow Up
Speech: ?I Had to Make A Stand?
Advocacy Reflections: ?There?s No Voice!?
11.?Specializing in Human Beings
What Do Parents Want? Value and Opportunity
What Makes a Great Advocate?
What Do Families Need for Their Advocacy to Be Effective? Reciprocity and Equity
Realistic Expectations But Hope for the Future
References
Index
About the Authors
