Disability in the Family

This insightful guide shows professionals how to collaborate with parents and guardians of children with disabilities in empathic, respectful, knowledgeable, and supportive ways. Packed with first-hand accounts and advice from parents and guardians, this book shines a light on lived experiences and reveals paths toward meeting families where they are in order to move forward together. Boroson emphasizes that appreciating the real needs of these families is a crucial step beyond mere adherence to a generic set of professional best practices or principles. Whether working in the field of medicine, education, law, mental health, or related services—in any capacity—readers will come away with the holistic knowledge, inclusive language, productive strategies, and differentiated understanding needed to work effectively with the diverse families they serve. Included is a robust array of resources for families, such as books, articles, associations, organizations, and support networks, along with a website for additional, up-to-date resources.

Introduction

Who Is This Book For?

Why Do You Need This Book?

Radical Acceptance in the Trenches

Chapter 1: Grief and Loss

Facing What Is

Dealing with Feeling

Kids… Facing What Is

Giving Up Hope

The Comparison Game

Chapter 2: Guilt and Shame

Is This My Fault?

Am I Doing Enough?

Am I Good Enough?

Typically Developing Siblings

Placement

Chapter 3: Isolation and Marginalization

Not Worth the Risk

No One Gets It

No One Comes Around

Judgment by Kids

Judgment by Strangers

Judgment by Friends and Family

Spouses and Partners

Forever Parents

Chapter 4: Stress and Fear

Exhaustion

Loss of Self

Financial Burden

Asking for Help

Behavior and Aggression

Burnout

Worry

Fear For the Future

Terminal Illness

Chapter 5: Disparities and Disenfranchisement

The System

Accessibility

Health Disparities

Unconscious Bias

Cultural Perspectives

Credibility Deficit

Epilogue

References

Resources for Support