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“Family Matters: FASD and the Family”

January 5, 2012

Ten months ago, the clinician who made Hope’s FASD diagnosis handed me two books: Ann Streissguth’s seminal Fetal Alcohol Syndrome: A Guide for Families and Communities  and Judith Kleinfeld and Siobhan Wescott’s Fantastic Antoine Succeeds: Experiences in Educating Children with Fetal Alcohol Syndrome.  Both copies were brand new: gifts to families with new diagnoses from MOFAS.

When I open a new book, I start reading at the publication page. I immediately noticed that Fantastic Antoine was copyrighted 19 years ago. And Streissguth’s was released fifteen years ago this month.

I just went to Amazon and repeated the same search I made then, looking for newer books.  One of my favorites, Diane Malbin’s Trying Differently Rather Than Harder: Fetal Alcohol Spectrum Disorders  is only 10 years old. There are several newer memoirs in the vein of adoptive mom Bonnie Buxton’s 2005 Damaged Angels, notably including several co-authored by adults living with FASD like Liz Kulp and Stephen Neafcy.

Until someone writes a book updating the reasearch advances on FASD over the past 10-15 years, those of us eager to read the latest are left with research published in journals.

The article I’m sharing today is the happy result of following clues in several other articles, looking for research on how family systems support children on the fetal alcohol spectrum. I was pleasantly surprised to find that after overviewing research on FASD in family systems, the authors review relevant findings from studies on families raising children with other disabilities, too.

So if you have FASD in your family, grab a large coffee and find some time you didn’t know you have to  glean from “Family Matters: Fetal Alcohol Spectrum Disorders and the Family” by Heather Carmichael Olson, Rosalind Oti, Julie Gelo, and Sharon Beck, published in the journal Developmental Disabilities Research Reviews in 2009. The abstract reads:

“Information about ‘‘family matters’’ is vital to developing targeted interventions, reducing placement disruption, and enhancing outcome in fetal alcohol spectrum disorders (FASD). The quality of the caregiving environment and family function are associated with long-term outcome in natural history study of individuals with FASD. This article integrates multiple information sources to better understand the role of family factors in the outcome of individuals with FASD, and how the family is affected by raising a child with this lifelong condition. A brief description of the useful informal literature is brought together with a review of the surprisingly limited body of systematic research findings on FASD and caregiver/family function, and new data describing children with FASD and characteristics of their caregivers. Directions for future data-gathering and intervention development emerge from combining what is already known with an exploration of what can be learned from a highly targeted review of family-related data in the wide-ranging, general literature on developmental disabilities, and use of a proposed conceptual framework that joins a developmental systems perspective with a family systems approach.” 

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5 Comments leave one →
  1. January 5, 2012 10:53 pm

    Just printed the journal off to read. Thanks for posting. I had noticed a bit of the same thing when looking at books on Amazon.

  2. January 6, 2012 11:15 am

    Me too! I was so disappointed when I first searched for books about FASD after my daughter was diagnosed. Then it was so hard to read and accept the info that was available. I’ll look forward to reading this. Thanks for sharing.

  3. January 6, 2012 11:27 pm

    Glad to share! Surely there must be some books in press we have not heard about yet… I’d love a distilled ‘best practices’ sort of book organized around a matrix of specific strengths and weaknesses.

  4. January 7, 2012 9:13 pm

    Thanks! Grabbed a big old cup of chai and ready to READ!!!! A great weekend activity after the fight for resources for FASD all week long 🙂

  5. January 8, 2012 8:26 am

    I’ve been praying for you Heather!

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