January 2005

• Reaching Out and “Recovering Hope”
• New book explores our “Damaged Angels”
• Chipping away at preconceptions in a small town
• Recovering Hope: Mothers speak out about FASD
• My story from FAS to REUNISAF

Reaching Out and “Recovering Hope”

by Marceil Ten Eyck

For me, part of a long cherished dream has been to find the means to reach out to other birth mothers. These are mothers who drank while they were pregnant and are trying to come to grips with the intense guilt, grief, shame and stigma connected not only with being a woman and an alcoholic, but being the mother of a child with FASD. Since 1989, when my youngest daughter was diagnosed with FAS, I have worked hard to learn about how my drinking impacted my two daughters, how to parent them appropriately, and how to advocate for them and teach them to advocate for themselves in the complicated world of school and, later, work. This has been a full time job. Now that my daughters are ages 29 and 35 and are navigating the world as adults with less need for supervision and constant support, I find myself turning to trying to find ways to help other birth mothers walk the path that I have been walking.

That is why I was pleased that, along with Julie Gelo – also an Iceberg board member – I was invited to serve on the steering committee for the FAS Center for Excellence. Here we have been among the group of birth mothers helping to implement the FAS Birth Mother’s Network, which is high on the list of the Center for Excellence’s priorities. Among these our efforts to develop and fund a network of birth mothers, we have worked for the following objectives:

• Convene a summit of birth mothers to assess their needs
• Develop/expand support groups
• Develop a cadre of birth mothers to provide trainings/presentations at conferences, meetings, and community events
• Develop a video profiling birth mothers for use in substance abuse treatment programs
• Evaluate impact of video with women in treatment

The video that Dr. Charley Huffine has reviewed in this issue (see “Recovering Hope: Mothers speak out about Fetal Alcohol Spectrum Disorders”) is the fruition of our efforts as an advisory group to the film process. For some of us, it was also an opportunity to reach out and share our own stories.

Michael Skinner, the director, was amazingly sensitive to each of us as he took us through the process of phone interviews, and then to actual filming. The team came to us, in to our homes and places of work, to do the filming. As advisors, we viewed two drafts of the video before it was finalized. Following viewings of the unfinished products, we had long conference calls to critique and recommend changes. Michael took our many, loudly voiced comments and put together precisely what we were hoping for in a film, while also making sure the content was consistent, clear and accurate. We were all thrilled with the final product, and the feedback from viewers has been consistently positive.

This video will be distributed to addiction treatment facilities nationwide, a powerful beginning in the process of reaching out. Copies (order #CR-69) may also be ordered free-of-charge by contacting SAMHSA’s National Clearing House for Alcohol and Drug Information (NCADI) at 800-729-6686 or visiting ncadi.samhsa.gov; only VHS-format is available at this time.

Marceil Ten Eyck is a psychotherapist and counselor in private practice in Kirkland,Washington. She specializes in working with individuals, couples and families impacted by chemical dependency and other addictive behaviors.

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New book explores our “Damaged Angels”

by Paul Connor

Damaged Angels is a book about the happiness and frustrations of raising a child with Fetal Alcohol Spectrum Disorders (FASD), written by Bonnie Buxton. This book is extremely well written and easy to read, giving important information that can be invaluable to anyone involved with someone diagnosed with or suspected of having FASD. Ms. Buxton, in her descriptions of her own and other parents’ experiences with their children – whether biological, adoptive, or fostered – clearly presents the positive and negative experiences that are so amazingly common when coping with this disorder. Despite a few errors in reporting some of the scientific data about FASD, the underlying message of this book remains clear and accurate.

One theme that continually surfaces throughout the book is the frustrations experienced by parents and guardians trying to deal with professionals who are not conversant with the effects of prenatal alcohol exposure. I wish I could say that these situations are uncommon, but unfortunately, they are all too often true. Most professionals tend to focus primarily on their area of expertise. Therefore, like the old story of the three blind men describing an elephant, professionals from different disciplines often look at only one aspect of a person with FASD, and base their diagnoses and treatment plan on this perspective. While the chosen aspect may be valid, the underlying issue of FASD is the brain damage that is caused by the prenatal alcohol damage, so looking at only a single aspect of the patient’s behavior won’t give the professional a full view of the patient’s range of weaknesses and strengths.

On a related note, one of the missions that I have had in my nine years working with this disorder has been to inform professionals about the damage of prenatal alcohol exposure. Whenever I give a lecture, I ask professionals if they have heard about FASD and whether they have worked with someone they suspected of having FASD. When I first started, very few claimed to have experienced FASD in their practices. However, lately, the majority of the people I speak to acknowledge that they have worked with someone with FASD and want to learn how better to help them. Therefore, although I believe there is still a long way to go, I think that professionals are gaining more knowledge and will be better able to work with people with FASD more appropriately and with more sensitivity as we move further into the coming years.

Another frustration discussed in the book, and described by many people working with FASD, is the difficulty of getting a diagnosis once FASD is suspected, and subsequently how this diagnosis changes everything. Finally receiving a diagnosis of FASD can be one of the biggest and most useful treatment interventions because it dramatically changes the expectations and perceptions that people have of the alcohol-affected individual.

In this book, Ms. Buxton does a lovely job of describing how vitally important it can be getting support from others who are also dealing with FASD – even if those individuals are separated by thousands of miles and can only converse over the Internet. The success stories Damaged Angels describes always occur in the presence of family and social systems that understand FASD and offer highly structured support for the affected individual and their loved ones. I especially enjoyed Ms. Buxton's description of the “superparents” who are dealing with the same issues as other families affected by FASD, but seem to be forever tireless, creative and amazingly resilient.

There are two issues discussed in the book that I feel are somewhat misleading. The first issue is Ms. Buxton’s use of the term “survivors” of FASD. To me, the term survivor implies that after treatment the individual is free of the disease, with no symptoms persisting—like cancer survivors. This is probably not the interpretation that Ms. Buxton intended when using this term, but I worry that it's use could give the impression that if a person with FASD is performing well, he or she is essentially cured, and thus service systems may be relaxed or terminated. For individuals with FASD, losing these supports often result in restarting the cycle of problems, because with fewer services and less structure, behavioral problems and difficulties re-emerge. We have seen this many times with children and adolescents who are graduated from services such as residential treatment. Because they are doing well in the residential center, it is believed that they should be able to generalize this behavior and function well on their own; however, more often than not, the individual rather quickly falls back into the same behaviors that caused them problems before treatment.

There is a second issue that crops up frequently in this book that I would like to caution readers about: over-generalizing the diagnosis of FASD and seeing it everywhere. As a researcher who specializes in FASD, I, too, fall into the trap of wearing my FASD-colored glasses and attributing many cognitive disabilities, behavior problems and physical characteristics to the possible effects of prenatal alcohol exposure. I always need to remind myself that there are many other possible causes of these deficits and that focusing on them solely as symptomatic of FASD can do a great disservice to individuals who may have genetic disorders, traumatic injuries or other unrelated illnesses that should be more appropriately diagnosed and treated. Unlike many professionals and people who don’t recognize FASD, we tend to see it everywhere.

Despite these concerns, Damaged Angels is a compelling story about living with FASD, and the joy and sorrow that accompany it. I found it to be an engrossing book and would recommend it to anyone, professional and public alike, with an interest in learning about the realities of FASD.

Paul Connor is an Acting Assistant Professor at the Fetal Alcohol & Drug Unit of the University of Washington’s Medical School in Seattle, and is an Iceberg board member.

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Chipping away at preconceptions in a small town

by Kathy Paige

Susanville, a town of 17,000 people (half of whom are incarcerated in one of two state prisons there), has just been graced with one of the 20 five-year, half-million-dollar SAMHSA grants.* The road to this remarkable milestone began about five years ago, when a good couple raising their grandson started chipping away at the stony ignorance about prenatal alcohol exposure that is so common all over California—from sophisticated cities to isolated rural areas like ours.

Phil Parry, the grandpa, started out sharing information about FASD in meetings of the Lassen County special needs advocacy group. We credit Phil’s big heart and equally big stubborn streak for the amazing progress Lassen County has seen since then…he walks into the offices of county supervisors, physicians, school boards and anyone else he thinks should be aware of fetal alcohol damage, and doesn’t leave until his quarry has gotten an earful. The approach of Phil has inspired some quick getaways, but eventually he always gets his point across.

Spurred by his efforts, the County Office of Education has sponsored a series of conferences and workshops with speakers such as Ed Riley, Dan Dubovsky, Susan Doctor, Julie Gelo, Vicky McKinney and Jocie deVries, and myself. Around 150 people usually attend these conferences, and a dedicated core of about six people has emerged from various agencies as well as non-official parts of the community.

A little over two years ago, an official with Child Protective Services put out a general message to the effect that her department was NOT going to create more trouble for itself by identifying children with fetal alcohol disorders. There is nothing more galvanizing to the independent (some might say contrary) nature of this community than to be told something is off-limits. Understanding that the county was not about to create diagnostic capacity here, Phil and his lawyer created the nonprofit agency Fetal Alcohol Services, Inc., for exactly that purpose.

Meanwhile, down in Santa Clara County, we were happily diagnosing away, having started a diagnostic clinic at our county hospital, patterned after the one at the University of Washington (UW) in Seattle. We saw family after family having obtained for their child the familiar exhausting series of inadequate, usually insulting, and frequently damaging prior diagnoses. You would have thought we were engaged in some tragic endeavor if you peeked in on one of the diagnostic sessions. Often there were tears streaming down the faces of the caregivers—and often our own. Frequently relief brought on these tears as the parents realized that: “Finally someone understands!! We are not crazy!! We do not need another inane parenting class where they tell us about the little sticky charts!”

This period of functioning clinics lasted about 18 months, during which we saw roughly 90 children. It was certainly not a money-making endeavor, as all who have attempted similar tasks can attest: Four professionals spending the better part of a half-day on one patient could, if billed privately, run upwards of $2,000. As it was, Medi-Cal reimbursed on a fairly paltry basis. We were supported by grant funding, and could have probably secured more, but we were unceremoniously shut down before we had a chance to try.

A new boss had come in like a large dark cloud. A young physician who believed he knew all about FASD—but in fact was typically undereducated on the subject—insisted on a strict “strength-based” approach. He objected to the term “disorder,” believing that strengths should be the sole focus of the diagnostic session and the report-back. As another adoptive mom on the team phrased it in an exquisite attempt to illustrate the folly of this approach: “If a child comes to you with cancer, do you say ‘Johnny has excellent cell replication skills?’” It fell on deaf ears.

Very shortly thereafter, we understood that the diagnostic system had had its day in Santa Clara County, and now that day was over. We on the team felt like road kill. Flattened. Twice, diagnostic clinics almost came to fruition in San Jose, the county seat, and twice there was a roadblock in the process that stopped them short.

Meanwhile, Phil was, in his “never hurts to try” way, badgering me to come up to the mountains and work on starting a clinic there. During the heyday of our Santa Clara County clinic this was no more than an ongoing joke between us. But there came a day when, after one more awful experience with county bureaucracy in San Jose, he called with an offer of a small contract to work on grants and do a little training.

I took it, and am glad I did so. The ground of fetal alcohol awareness in Lassen County had been cultivated over the prior five years to the point that relevant seeds rarely do not flourish, and I count myself in that sense, too. Now I get many heartfelt invitations to speak, to write, and to sit in with multidisciplinary teams. I am constantly creating linkages and am able to generally grow this issue.

And Phil is focusing on a particularly needed direction: prevention among high school and middle school students. He is promoting a curriculum developed by Arc Riverside called “FASTRAC” –a peer education approach that appears to be enjoying good success so far, with kids telling us that they listen to their peers much more willingly than they would listen to adults teaching this material, and that it has made a big difference in how they will react to any pregnant friends who drink. (Arc Riverside can be contacted at www.arcriverside.org.)

The California Endowment, a large health-oriented foundation, has also seen fit to support the growth of our little grass roots nonprofit this year. We are conducting a needs assessment: talking with agency staff, professionals and consumers to get a good sense of what the community needs.

This has been a community effort, with many sources pitching in. We just had our fourth in a series of Town Hall meetings in St. Paul’s Lutheran church, thanks to Pastor Vic (and Phil, who is Head Elder there). About 20 people have attended the meetings each time, including the District Attorney, one of the county supervisors, various social-worker types, people in education, and a wide variety of others. This group has evolved into the planning group for the SAMHSA grant.

So far, not surprisingly, we have identified this as the “big-picture” need: A community-wide, whole-person, lifelong support system that supplants the current punitive, unrealistic and largely unsuccessful set of agency services. Included in our list of needs is, of course, a diagnostic clinic based on the UW model.

Other specific ideas also spin off in these conversations, such as supported housing and employment, a cadre of volunteer “do-fers”, a universal intake that includes evidence of fetal alcohol issues, and fetal alcohol awareness for every multidisciplinary team across the systems. We also recognize the definite need for “scaffolding,” or a protective framework, for families in danger of child removal, taking into account the needs for extra understanding, structure and encouragement for mothers with possible FASD.

It is an exciting time to be here where the high desert meets the pines, where quartz crystals stud the hillsides next to petroglyphs so old no one even knows what they mean any more. There is a deep spirit of community (no road rage!), and resourcefulness born of much necessity. The SAMHSA grant gives us the wherewithal to bring our dreams out into real life. Because our entire Health and Social Services group is working as a coherent unit we believe we can pull together something great, not just patchwork, and not in competition with each other.

We know we will meet bureaucratic obstacles and closed minds, not to mention serious budgetary limitations. But from here, it looks like awareness of the issues surrounding FASD may have reached critical mass, as it now appears to be growing without extra pushing and pulling from the outside. Next we build the bridge to action: policy change, culture change and concrete supports.

This whole endeavor owes a gigantic debt of gratitude to the Seattle people—generous comrades, you started me on this road eight years ago, you breathed wind into Phil’s big sails, and you light our collective way into the future. We salute you, we thank you, and we will certainly lean on you again from time to time!

*This is technically not a grant; it is a subcontract with Northrop Grumman, the company administering the SAMHSA FASD Center for Excellence funds.

Kathy Paige is a consulting psychologist, the executive director of Fetal Alcohol Services, Inc., a member of the California Task Force on FASD, and adoptive mother of a 24-year-old with probable FASD. She also consults and conducts FASD trainings around the country and in Latin America.

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Recovering Hope: Mothers speak out about FASD

a review by Charles Huffine, MD

What a pleasure it was to see the video, Recovering Hope: Mothers Speak Out About FASD. As a person on the Iceberg editorial board and in the world of FASD, it was inspiring to see many friends explain their unique circumstances and their family challenges. For those who may have less experience with FASD, this video will be an enlightening and moving experience. I am eager to show it to many different audiences in the world of mental health, particularly within children's services and our chemical abuse and dependency services community. It presents so much information that could be critical for family members and professionals alike.

Recovering Hope is really two programs of about 25 minutes each. The first focuses on how mothers with children affected by fetal alcohol exposure came to find out about their conditions, its impact on them and the support they got from the growing community of families with affected kids. The second program focuses on those coping with the challenges of raising children struggling with disabilities related to fetal alcohol exposure. Parents of all backgrounds contributed to this video, as did some key professionals.

The two programs cover all aspects of the field of fetal alcohol research. Ann Streissguth, PhD, the "mother" of FASD research and advocacy, presents key information and advice to pregnant moms regarding the potential harm to their babies by drinking while pregnant. Through the stories of the mothers, the evaluation process is shown in a way that should allay anxiety in those who consider seeking a diagnosis.

The second program shows the amazing inventiveness of mothers in raising their children who have FASD as they find ways to help their children work around challenges. It emphasizes the diversity of disabilities that are embraced within the term FASD. All of the individual family stories are inspiring, but what stands out for me is the amazing support emerging within the parent groups formed around FASD evaluation and treatment programs.

There are a number of brilliant mothers who have emerged as mentors and advocates for those needing support in coming to grips with their children’s disabilities. The importance of support from families who had been through the same travails cannot be understated: The testimony of the mothers in this video illustrates this point grandly. This was exciting for me to view as it so completely affirms the efforts being made in many other subsets of the mental health world.

As the medical director for child and adolescent programs for King County in Washington state, I have been affiliated with a federal grant program that promotes system of care reform and has defined and perfected the wraparound process as a key tool for improving outcomes for at-risk children. These grants serve some of the most difficult and challenging children in our communities who have not been well understood in conventional services. We have found that the wraparound process enables families to have access to a more value-based and culturally competent service. The concept of a wraparound process begins with parent empowerment and embraces the idea of parent support and mobilizing natural community supports; it is about parent professional partnerships and a wise use of professional services. What I saw in the Recovering Hope video was an exquisite expression of these values and principles.

In the larger arena of mental health policy there is a great deal said about recovery as a concept that transcends its origins in the drug and alcohol field. It now applies to the broadest array of human problems, including brain damage and dysfunction, as well as the family problems that accompany the guilt of having damaged one’s baby with fetal alcohol exposure. Recovery is about redefining the tasks presented to a family by a disabled child and of discovering hope. It is about the joy in achieving goals that allow for a sense of full participation in one’s family and community. This is what Recovering Hope provides the viewer. The brave women in the video are the inspirational heroines. In the course of their recovery from alcohol addiction, these women were honest enough with themselves to face the truth regarding their child's disabilities due to FASD. Their bravery in addressing why their half-grown children are unable to think and learn well, and their children's acceptance and forgiveness are gripping.

This video transcends the particular issues of raising children with FASD. It is a model and an inspiration for all who work in the fields of human services or are served by these systems. I highly recommend owning and sharing this wonderful video.

Charles Huffine, MD is an Iceberg board member.

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My story from FAS to REUNISAF

by Thierry Maillard
edited by Katy Jo Fox

I started working as a student at Reunion Island Hospital* in the Department of Psychiatry for Children in 1995. This was the first time I had met children with Fetal Alcohol Syndrome (FAS) and had heard about FAS. I was just finishing medical school and nobody had taught us the effects of alcohol consumption during pregnancy.

One of my professors, Dr. Thierry Michaud Nerard, was very aware of these effects and so he asked me to give an overview of Fetal Alcohol Spectrum Disorders (FASD) for his unit. Soon after that, professors from other pediatrics and obstetrics units asked me to teach their crews about FASD. Subsequently, my professor proposed that I take care of all the children with FASD in his unit; I was then to follow newborns and pre-adolescent children.

While I was working with these children, I saw so many families affected by FASD, and so many siblings with FASD. I also heard from so many people about the obstacles health professionals were experiencing in preventing this handicap.

Dr. Alain Fourmaintraux, the pediatrician at Saint-Pierre Hospital; Dr. Jean-François Lesure, the pediatrician at Saint-Denis Children‘s Hospital; and I decided to study the incidence of FASD for the year of 1996. The results were published in Teratology (August 1999), and confirmed a high rate of FAS in Reunion Island—at least 4.5 per thousand. This is almost the same rate as in Northern France and in Normandy. The results also showed that 5 percent of the mothers had a drinking habit that placed their baby at risk; these mothers consumed 21 or more drinks over a week period, or engaged in binge drinking of five or more drinks on an occasion (a drink being a pint of ordinary strength beer, lager, wine or rum). We suspect that more than 2 percent of the children on Reunion Island are affected by FASD.

With Dr. Denis Lamblin, we decided first to follow those children having a risk of being damaged during pregnancy and to think about prevention. Dr. Lamblin is a pediatrician (I’m a general practitioner now) and is the director of a center for children with disabilities (Centre d’Actions Medico Sociales Precoces). He knew those at-risk infants well because at least 10 percent of the children from his center had FASD and he recognized their facial features and/or behaviors.

We organized a study to follow the children. This study is nearly ready to be published, after following them for seven years. We also, for three years, organized meetings with diverse professionals from health and education fields, to justice and social workers. Unfortunately, we observed that each year had the same prevalence of FASD. Most of the time, professionals had difficulties not only working with mothers, but also working together. We decided to built a network to support them and to be sure that mothers and children had continuous care. REUNISAF (Réseau de Prévention du Syndrome d’Alcoolisation Fœtale), the first French network to prevent FASD, was born in 2001.

In the next issue, I will explain what our team has accomplished and our goals for the future.

*Reunion Island is a state of France off the coast of Madagascar.

Dr. Thierry Maillard is a general practitioner in a medical clinic in Saint-Louis of Reunion Island, France, and also the president of REUNISAF, a network for FASD Prevention and Cares (www.reunisaf.com).