Parenting a child with behavioral challenges: Fetal Alcohol Spectrum Disorder

I am hoping you are all doing well and are finding the nicer weather refreshing and not being locked in the house out of the elements a relief!  Each posting my goal is to give you a bouncing off place, a place to begin your journey to understand and to support your child who you love and care about.  This is a beginning, but I will provide you leads of where to go to continue the life long journey of discovery.

Last month, I had a request from a family to discuss resources for families parenting children who were exposed to Alcohol while still a fetus.  Then this month in Bethany Christian Services LifeLines Magazine we featured articles on parenting children living with FASD (Fetal Alcohol Spectrum Disorder)…thus this postings topic. In her article, If Your Child Has Fetal Alcohol Spectrum Disorder, Sarah Horton Bobo, Bethany’s Director of Post Adoption Support and Education writes: “Parenting has been called the toughest but most fulfilling job in the world.  Parenting children with special needs, such as fetal alcohol spectrum disorders (FASD), brings its own set of challenges.”  She provides many resources to assist parents in understanding FASD better and tools for families living with FASD. You can see her article online at http://www.bethanylifelines.org/your-childs-health/if-your-child-has-fetal-alcohol-spectrum-disorder/         

This quarter in the LifeLines Magazine there are multiple articles on FASD which you can read at http://viewer.epaperflip.com/Viewer.aspx?docid=ba5892dc-6bf5-4312-a2cb-a3170130f588#?page=0:

1.     A Primer on FASD 40 years and Counting:  What is the history of FASD? By Dr. Kenneth Jones pg. 11-13 In this article there are:

a.     Lesser known facts regarding FASD

b.    Top 10 things you’ll want to know about FASD by Adoptive mom Sandra Kuhn

2.    In their own words: Living with FASD by Rob Wybrecht pg. 6 “Act your age!  You may expect your children to act their age, when in fact, children with FASD aren’t capable of doing that.  With my child, I needed to adjust my expectations and modify how I gave directions.”  A chart is shown from www.fascets.org about developmental ages of children.

One of the gifts you have here in the Pacific Northwest is that we are rich with resources and professionals who understand FASD and the complexities it comes with.  There are many advocates and resources to reach out to and ask for support, knowledge and understanding.  I have decided to not make a comprehensive list of resources, but a list of a few key resources that have many resources listed in them.

Resources:

NOFAS- National Organization on Fetal Alcohol Syndrome - (800) 66-NOFAS

NOFAS is by far the best resource for any family searching for resources in their community to work with their child who was exposed to alcohol.  They have listing for every state. These are the links for our area:

For Oregon you can go to:

http://www.nofas.org/state-resources-for-oregon/    

For Washington you can go to:

http://www.nofas.org/state-resources-for-washington/

Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc. (www.fascets.org) is an affiliate of NOFAS in Oregon and offers training and resources to increase your knowledge around FASD and the how the brain works.  They even have a workshop coming up in June in Portland, OR. http://www.fascets.org/schedule.html

 The University of Washington FAS Diagnostic and Prevention Network: http://depts.washington.edu/fasdpn/ is a great resource to find someone who can assist with diagnosis and detection in your child.

The Center for Disease Control and Prevent FASD: http://www.cdc.gov/ncbddd/fasd/index.html has information about diagnosis, statistics, training resources and much more.

Advocating in school for your child with FASD:

Fetal Alcohol Spectrum Disorders Education Strategies Handbook www.usd.edu/medical-school/center-for-disabilities/fetal-alcohol-spectrum-disorders-education-strategies-handbook.cfm
Reference guide filled with practical classroom strategies for students suspected of having an FASD

Teaching Students With Fetal Alcohol Spectrum Disorder: Building Strengths, Creating Hope http://education.alberta.ca/media/377037/fasd.pdf  Offers key concepts for planning effective education programs for students with FASD

Disability Rights in Oregon Special Education: A Guide for Parents & Advocate, 6^th Edition http://www.droregon.org/resources/5-publications-1/education/Special-Education-Guide-6ed.pdf      

NOFAS Educational Guide: http://www.cdc.gov/ncbddd/fasd/training.html