Day 28-30 of 99 Days to FASDay: FASD Truths

Day 28, 29, and 30 of 99 Days to FASDay brings some advice from adults with FASD.

When the maiden turned 18, my focus changed from looking for advice for children and teenagers to advice for adults. In particular, I have been trying to find advice from adults about the lived experience with FASD. I found this quote in a book called FASD: unexpected journeys published by the FASD Network of Saskatchewan.

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From the Book’s Foreword:

In 2015, the FASD Network set out to bring greater awareness to Fetal Alcohol Spectrum Disorder by collecting the stories of people whose lives have been affected by the disability.

The various chapters included in this book are the stories of the remarkable people who live their daily lives faced with the struggles and stigmas of an invisible, often disregarded disability. Through the voices of the caregivers who dedicate their entire selves to improving the lives of others, through the eyes of family members and siblings, through the experiences of the extraordinary individuals living with FASD this book details the unexpected journeys of twenty-three Saskatchewan families as they navigate a unique disability.

It is our hope that this book will help show the world the truth about FASD. It is with the purpose of ending the stigma and misconceptions that this book was created. Chronicled within this collection are the stories of the challenges that have been overcome, the successes gained after countless struggles, and the accomplishments that were always deemed impossible. It is a testament to the true ability and nature of the people among us who live with FASD.

For anyone on their own journey with FASD, we hope that you finish these stories with a greater understanding of the disability, a renewed sense of hope in the world, and most importantly, the knowledge that you are not alone.

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It is so important to hear from adults with FASD. There are more adults speaking up and out and mentoring others, but the information to help adults and the people who support them is scarce, compared to advice for children and teens.

I would like to thank the FASD Network and Nikki, Duke and Misty for granting permission to share this information and encourage anyone who wants to be inspired to contact The FASD Network and order a copy of FASD unexpected journeys.

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If you are an adult with FASD or know one who has a truth to share or some words of wisdom for others, feel free to comment below.

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Another great compilation of real stories is Real Families. Real Lives. This virtual relay race for Red Shoes Rock to Stop FASD, leading up to FASDay on September 9, 2017, shares stories from real families living with FASD.

If you are looking for more inspiration from adults with FASD check out:

FASD Lane a place for adults with Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE), or any of the disorders defined as Fetal Alcohol Spectrum Disorders (FASD).

Role Models from Learning with Hope. A collection of first-person accounts from people who know what it feels like to walk through the world with this invisible disability.

And for those that would prefer to watch a video check out Young Adults Share their experiences with FASD from MOFAS.

2018 UPDATE:

8th International Research Conference on Adolescents and Adults with FASD. Click Webcasts to find videos of the presentations, including some powerful presentations by adults with FASD.

I also discovered a Doctorate in Social Work Dissertation by Anna CK Erb, University of Pennsylvania (2015)  The Life Stories of Individuals Who as Adults Were Identified as Experiencing the Effects of Fetal Alcohol Spectrum Disorder

A narrative-style qualitative research methodology was used to explore the identity of adults living with FASD, in particular those who learned about this during adulthood. e researcher interviewed four adults living with the effects of FASD who became aware of their FASD as adults and reviewed several published autobiographical accounts as additional data sources. Upon analysis, themes of identity emerged and parallels between the life stories of the participants and other studies that address the psycho-social effects of FASD were identified. The research results suggest implications for social work practice, bring positive attention to a disenfranchised group, identify areas of needed study and shed insight into how adults living with the effects of FASD conceptualize their identity.

One of the links had to be removed as it was no longer valid. If you know of any links specific to adults, please comment below so we can update the post.

Check back on July 1 for Day 31 as we look at some Myths and Facts about FASD.

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