FASD Diagnosis: Benefits & Challenges from a Clinician and Self-Advocate Perspective

FASD Diagnosis: Benefits & Challenges from a Clinician and Self-Advocate Perspective

Presenters: Gina Schumaker, Self-Advocate & Member, Board of Directors, Alaska Center for FASD and Marilyn Pierce-Bulger, APRN (MN, FNP-BC, CNM) President, Board of Directors, Alaska Center for FASD & Consultant, University of Alaska Anchorage Center for Behavioral Health Research and Services

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This webinar will provide an overview of various diagnostic methods, share ideas for new strategies, explore challenges encountered by both team members and clients/families, and discuss the benefits of diagnosis. Information will target a general audience but health professionals may find this session of interest as well.

About the Presenters

Gina is an adult with FASD who received a diagnosis at age 50. She went to a presentation about FASD with a friend and discovered that she may have brain-based differences. After a false start with a bad neuropsychology experience she was able to work with a different provider who could describe her brain-based strengths and challenges and provide her with a diagnosis.  She is married, has two children, is parenting successfully and runs two businesses.  But life has not been without its’ challenges as her story includes leaving a tumultuous home at age 16, substance use as a teen, multiple (some abusive) marriages, being taken advantage of during financial transactions with her business, and years of depression and blaming herself for her limitations. With the new information after diagnosis, she is better able to understand and forgive herself for things she cannot do. This allows her to move through the world with less self-criticism and more acceptance of her life and abilities.  She needs her home/life to be very organized and structured, understands there will be good brain/bad brain days, and wants to support others who have FASDs.   Marilyn Pierce-Bulger, APRN (MN, FNP-BC, CNM), is a family nurse practitioner and certified nurse-midwife with 45 years’ experience in maternal and child health and 25 years’ experience in the field of FASD.  She created Nutaqsiivik, a home visitation program, to address the high post neonatal infant mortality health disparity for Anchorage urban American Indian/Alaska Native infants. During that work she discovered that a large percentage of the high social risk clients served by the program either had an FAS/FAE diagnosis or were living and parenting unsuccessfully due to an undiagnosed cognitive impairment. She has worked as a consultant for the State of Alaska, University of Alaska (UAA) Center for Behavioral Health Research and Services CDC-funded FASD projects, and the National Institute of Child Health and Human Development (NICHD)/Native American Management Services- Healthy Native Babies project. She founded and managed the Anchorage FASD Diagnostic team for 10 years and created the Alaska Center for FASD in 2017 to promote prevention, support caregivers and individuals with FASD, and to advocate for systems change.

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