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Photo made and donated by Samuel Nothstine
Photo made and donated by Samuel Nothstine

Resource & Research Links

General

State of Alaska FASD Facts

State of Alaska Governor’s Council on Disabilities and Special Education FASD Workgroup

State of Alaska Advisory Board on Alcoholism and Drug Abuse-FASD Partnership

National Organization on Fetal Alcohol Syndrome (NOFAS) is a great organization founded by a birth mother in recovery and like-minded advocates. Something here for everyone including links to free webinars. Consider signing up the NOFAS Weekly Roundup which has up to date FASD information and listings of conferences. NOFAS has an affiliate network, including two Alaskan nonprofits: Alaska Center for FASD, Anchorage, (this website) and Frontier Community Services.

NIAAA Overview of Fetal Alcohol Exposure

Proof Alliance (formerly MOFAS an affiliate of NOFAS). They re-branded because there is now proof that prenatal alcohol exposure is a leading cause of brain injury in children and there is proof that FASD is preventable and people living with an FASD can reach their full potential.

FASDHub (Australia)  is a site that tailors information based on who is entering the site (health & other professionals, policymakers, parents/caregivers, and indigenous research.

Prevention

Centers for Disease Control and Prevention (CDC) focuses on health professional training related to alcohol screening & brief intervention.

American College of Obstetricians & Gynecologists (ACOG) information for providers, patients, prevention strategy resources.

NIAA Rethinking Drinking info & resource site.

Proof Alliance (formerly MOFAS in Minnesota) summarizes key points nicely here.

Recognition and Early Intervention

American Academy of Pediatrics (AAP) has worked with CDC for several years to help pediatricians understand what FASD is, how to screen adolescents & parents, recognize & diagnose it in children, and interventions that are useful.

Education

6 Things Educators and School Staff Should know About FASD Nate Sheets of Oregon Behavior Consultation.

8 Magic Keys - 20 minute cartoon format video with teen with an FASD host discussing the 8 strategies that help him. We believe this is also available on Anchorage School District's internal staff training site.

Education & FASD Toolkit - a project of the University of Washington Alcohol & Drug Abuse Unit and Fetal alcohol & Drug Unit- webinars for parents and educators.

Executive Functioning e-book | POPFASD - Fetal Alcohol Spectrum Disorder (FASD) Resource for Educators - This e-book is designed to explain executive functions in a clear, understandable way and to help pinpoint the struggles a child might experience. It’s organized into three broad categories where executive skills come into play: learning; behavior and emotions.

Language Literacy Program is an evidence-based/classroom-based program that provides instruction to improve receptive and expressive language skills as well as early literacy skills.

Math Interactive Learning Experience (MILE) Program is an evidence-based program that demonstrates the effectiveness of adaptive materials and tutoring methods to improve math knowledge and skills in children with FAS.

Dan Dubovsky, formerly with the SAMHSA FASD Center for Excellence (no longer in operation), is a social worker and parent of an adult with FASD. Here he speaks about The Approach that we all need to use in our work with individuals with FASD.  There are multiple other helpful video segments that feature Dan available in the video sidebar.

Visual Math Learning offers free math lessons featuring an interactive on-line tutorial for teaching elementary mathematics and basic arithmetic for grades K-12 at the pre-algebra level. It is an instructional aid for parents, teachers, and educators of primary, elementary, and middle school students, as well as a resource for lesson plans, homework help, and home-schooling math lessons. The tutorial includes games, puzzles, interactive diagrams, and computer animated virtual manipulatives that emphasize active learning concepts by visualization.

SEEING AS UNDERSTANDING: The Importance of Visual Mathematics for Our Brain and Learning (Stanford University)

Education-focused BOOKS

Mascolo, J.T., Alfonso, V. C., & Flanagan, D. P. (2014) Essentials of Planning, Selecting, and Tailoring Interventions for Unique Learners. New Jersey: John Wiley & Sons, Inc.

Sousa, D. A. (2011). Educational Neuroscience. Thousand Oaks: California. A SAGE Company.

Excellent source for information and referrals to experts and attorneys:

Kathryn Kelly, B.A. FASD Legal Consultant. Faslaw@uw.edu
Fetal Alcohol Drug Unit, University of Washington
1107 NE 45th St., Suite 1020
206.543.7155

National Organization on Fetal Alcohol Syndrome (NOFAS) is the national organization on FASD issues, providing both advocacy and information. NOFAS does not engage in counseling/advocacy for individuals but does have good information/resources re: justice involvement issues.

There is an extremely detailed and practical Canadian site for Fetal Alcohol Spectrum Disorders and Justice. The site has specific articles on many aspects of the way FASD affects the justice system, including specific tips. (Of course, there are differences between Canadian and USA law and also a difference in diagnostic criteria. Nevertheless, the site has wonderful information). One of their tips is that if you find out that a person involved in the justice system has an FASD condition, make sure the judge knows as soon as you do.

The Fetal Alcohol Society of the Yukon (FASSY) in Whitehorse, Yukon only serves adults that may be affected by an FASD condition. Their booklet Trying Differently, A Guide for Daily Living and Working with FASD, 4th Ed. Is full of tips from families that include adults with FASD for other families. It has a section on dealing with the justice system involvement. Contact FASSY.

Stone Soup Group may be able to provide a “Parent Navigator” to walk alongside the family when dealing with the justice system, school issues etc. Phone 877.786.7327 (toll free) or 907.561.3701.

Strategies for Support & Intervention

Brain Highways provides fun, educational programs to improve learning, focus, and behavior (no specific FASD focus but great information about sensory-based resources).

CDC provides nice summary of early intervention, normal development resource links, and protective factors that improve outcomes

Dan Dubovsky, formerly with the SAMHSA FASD Center for Excellence (no longer in operation), is a social worker and parent of an adult with FASD. Here he speaks about The Approach that we all need to use in our work with individuals with FASD.  There are multiple other helpful video segments that feature Dan available in the sidebar of this site.

Families Moving Forward (FMF) program is a positive parenting intervention designed to help families raising children between 4 and 12 years old who have behavior problem and FASD (or were heavily alcohol exposed). The FMF program model is a behavioral consultation intervention that combines a positive behavior support  approach with motivational interviewing and other scientifically validated treatment techniques.

PACT is an evidence-based group program designed to improve behavior regulation skills, executive functioning, and parent effectiveness.

Petrenko, Christie,  Positive Behavioral Interventions and Family Support for Fetal Alcohol Spectrum Disorders

Petrenko, Christie and Michelle Alto, Interventions in Fetal Alcohol Spectrum Disorders: An International Perspective

POPFASD  is a British Columbia-based site. Explore their collection of POPFASD developed resources in addition to curated resources from around the web.

The Asante Center (British Columbia) are Innovators Addressing Developmental Stress… helping unlock potential so that people with FASD and other neurodevelopmental conditions can exceed their own expectations. This site has excellent downloadable rack cards created by adults who experience an FASD related reassurance, FASD diagnosis, and support

Understood is dedicated to shaping a world where millions of people who learn and think differently can thrive at home, at school, and at work. While not focusing on FASD specifically this site features plain language information about many disabilities with many helpful video links.

USFA Kids is a computer-based program that teaches and reinforces basic fire safety skills.

Whitecrow Village (British Columbia) is creating context for understanding and preventing FASD through education, support, and interactive camps.

Research Sites We Like

University of Washington FAS Diagnostic and Prevention Network (FASDPN) site contains copies of research articles, information about the FASD 4 Digit Code diagnosis process, family support, and prevention

CanFASD  Canada FASD Research Network - CanFASD’s unique partnership brings together many scientific viewpoints to address complexities of FASD, with a focus of ensuring that research knowledge is translated to community and policy action.

Collaborative Initiative on Fetal Alcohol Spectrum Disorders - The purpose of this consortium of worldwide researchers is to inform and develop effective interventions and treatment approaches for Fetal Alcohol Spectrum Disorders (FASD), through multidisciplinary research involving basic, behavioral and clinical investigators and projects.

This U.S. Interagency Coordinating Committee on FASD fosters improved communication, cooperation, and collaboration among disciplines and federal agencies that address issues related to prenatal alcohol exposure.

Telethon Kids Institute (Perth, Western Australia) is conducting cutting edge work in the field of FASD including FASD prevalence studies and staff intervention strategy development for a large regional juvenile justice center (Banksia Hill Detention Center).