Tag: Living experience
-
Adult Leadership Collaborative of FASD Changemakers: Forgotten or Ignored? FASD as the Adult Orphan of Disability – Does Anyone Care?
For more than four decades, adults living with Fetal Alcohol Spectrum Disorder (FASD) have been described as the “orphan child of disability,” a term originally used by a provincial court judge in British Columbia who repeatedly encountered individuals with FASD in the justice system without appropriate diagnosis, understanding, or support. Unfortunately, this description remains strikingly…
-
ALC of FASD Changemakers: FASD – It’s all About the Dominos: The Big Five
In this workshop, the International Adult Leadership Collaborative (ALC) of FASD Changemakers will explain and talk about what they call “inside the box thinking” behavior to describe how to better understand and think about FASD to support those who are living with it. This information is what they have learned as adults about a way…
-
ALC of FASD Changemakers: Behind the Mask – Unravelling Grief in People with FASD: It’s Complicated
This presentation explores the lifelong and often unrecognized grief experienced by individuals with FASD, beginning in childhood and continuing into adulthood. Drawing on the lived experience and professional expertise of the ALC of FASD Changemakers, it examines how ongoing, unacknowledged losses and “don’t ask, don’t tell, never talk about it” patterns of denial impact mental…
-
FASD Changemakers: Their Journey and Impact
Challenges and Changes: The Story of How the FASD Changmakers Came to Be and Do What They Do” Twenty years ago, two adults with FASD came together to challenge the system’s status quo. They decided to do something no one really thought people with FASD could do – change the message because if they didn’t…
-
A Family Perspective on the FASD Diagnosis
Written by Laura Bousquet A parent, self-advocate, and part of the FASD United team, Laura responds to proposed changes to FASD diagnosis recently published in The Lancet Child & Adolescent Health. Upon reading this article, I was struck by a sense of invalidation—of the symptoms, the condition itself, and the profound impact it can have. The…
-
The Importance of Self-Care for Individuals with FASDs: ALC FASD Changemakers
A new 13-week social media series begins with the meaningful help of the ALC FASD Changemakers. This collaboration leads to the highly anticipated Vancouver Conference 2024, where both organizations will meet in Seattle. The series is about self-care, which can be defined as numerous different things depending on the person you ask. Instead of promoting…
-
The Triumphs and Troubles of Living with FASD: An Interview with Self-Advocate Marlee
People are not just one thing. As we know, living with FASD can lead to challenges. It can also highlight the unique strengths and positive qualities of those with them. To help explore this topic and provide a living experience perspective on the matter, FASD United has interviewed Marlee, a resilient, wise woman with an…