Description
Book SynopsisYou've read the history and the background, now meet the families! This companion book to
Meeting Families Where They Are traces the advocacy journeys of 12 caregivers across a range of racial, ethnic, social, disability, economic, and family identities. The stories reflect the unique lives, histories, and needs of each family.
Table of Contents
- 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
