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Book Review of
DAMAGED ANGELS: A Mother Discovers the Terrible Cost of Alcohol in Pregnancy

By Bonnie Buxton

This book gives a wonderfully encouraging and in-depth understanding of “Canada’s most common, most costly and least understood mental disability.” That disability is Fetal Alcohol Spectrum Disorder (formerly known as Fetal Alcohol Syndrome / Fetal Alcohol Effects). “It is a must read for anyone caring for a person with FASD or considering it,” says Dr. Sterling Clarren, Professor of Paediatrics at the University of Washington.

We are told in a passionate and highly informative manner, how FASD has personally affected the author’s family, as well as the profound effect it continues to have in societies around the world. We learn that FASD is an entirely preventable disorder that affects nearly 1% of our population or approximately 300,000 Canadians. Also, that because only a fraction of affected children present with identifiable facial features, FASD is often an “invisible disorder” which makes it very difficult for professionals to diagnose and treat.

The author, Bonnie Buxton, is a journalist and adoptive mother who tells of her family’s courageous and relentless struggle to understand their daughter’s disability. She and her husband, Brian Philcox, are the co-founders of International FAS Awareness Day, which was observed for the first time in 1999 on Sept. 9th at 9:09 a.m. and continues each year across North America and in many other countries. They are also the co-founders of FASworld Canada (www.fasworld.com), the Canadian non-profit organization that works at building awareness. The cover of Damaged Angels displays the FAS Knot, which the author and her husband created as an international symbol of communities connecting to defeat FASD.

The need for increased awareness about FASD is an important message that is emphasized throughout this book. The author presents a “large scale social marketing plan” for us in Chapter 14, The Spinning Kaleidoscope. The most important part of that plan would be to ensure that everyone knows that “three decades of medical research have taught scientists that even small amounts of alcohol, any time in pregnancy, can permanently, but invisibly, affect your baby’s brain and your child’s learning and behaviour.” It is explained that alcohol is a “teratogen” – which is a substance that causes permanent birth defects. Other famous teratogens are thalidomide, codeine and toluene (used in glue-sniffing). The author makes the important point that, while these substances would never be suggested as safe in even moderate amounts, pregnant women are still consuming alcohol.

The author further outlines her overarching marketing plan and national communication strategy to raise this awareness. The problem of lack of awareness is explained as a complex web of misinformation perpetuated by professionals and the media. The fact that “in Canada, the combined tax revenues from the alcohol industry, provincially and federally, are $3.2 billion per year” the author tells us, is also a contributing factor in preventing the support of any measures that “may very well work.”

We are told that another factor that few are aware of is that those with FASD suffer a wide range of lifelong and often invisible disabilities. The author outlines the alarming findings of the studies done by the clinical psychologist, Ann Streissguth. She has studied the long-term effects of FAS along with those of the seemingly milder ARND (Alcohol-related Neurodevelopmental Disorder – then known as FAE). Streissguth’s longitudinal study, done in 1996 entitled, “Understanding the Occurrence of Secondary Disabilities in Clients with FAS and FAE” “clearly links” FASD with secondary disabilities and cites some very alarming statistics to back up her concerns.

The author offers parents and caregivers a wide range of solutions for dealing with the difficult effects that these statistics represent. She tells us that these long-term disabilities can be managed relatively well if a number of important factors are taken into consideration early in the child’s life. These factors include:

• early diagnosis of FASD, followed by assessment of strengths and limitations
• a protected environment, increased supervision and structure
  (i.e. SCREAMS – see Chapter 6, Society’s Children p.110 for further explanation of this model of intervention strategies)
• a supportive family who understands their disabilities
• a management team, which could include professionals in medicine,
  speech/language, education, skill-building and behaviour management focused
  on prevention of behaviours

We are also told about Diane Malbin’s insightful ideas presented at a conference on FASD. This biological mother of an adult child with FASD talked of the need for a paradigm shift in attitude. As well, the author informs us that Dr. Sterling Clarren, who has led the world in creating diagnostic criteria for FAS, “originated the idea that the person with FAS will always need as ‘external forebrain.’ Two interesting couplets that are encouraging.

We empathize with the author when she wonders whether her daughter and her whole family’s outcome would have been different, if they had known about these techniques earlier. We are given hope when we are told “how [parents] have overcome their grief by focusing on their children’s strengths rather than their weaknesses.” She also gives a daunting list of issues that parents must come to terms with while raising a child with FASD. She tells us that, “there are no short cuts on the journey through grief.” She advises us that “when we stop raging at our children and at the community’s lack of support and begin to view our children as whole and perfect regardless of their disabilities …, then miracles happen. Our children begin to heal, and so do we.” Through the author’s own invaluable experience and knowledge, parents are given a concrete and positive plan for managing those with FASD.

Parents, both adoptive and biological, will be encouraged and better informed about FASD after reading this book. Professionals, families and friends will gain a new perspective on how FASD is adversely affecting so many aspects of our society and threatening the stability of families and communities worldwide. Hopefully, after reading this book, those involved with FASD will join the campaign to raise awareness and begin to implement the strategies that the author has so strongly and straight forwardly outlined. This is a wonderful addition to the topic of FASD and Bonnie Buxton and her family stand as an inspiration to all of us.

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