January 2004

• Parents become FASt Friends
• FASt Friends network members gain strength from collaborating
• FASD management: A work in progress
• Meet the FASIS board of directors

Parents become FASt Friends

by Julie Gelo

The FASD Family and Community Support Network – also called FASt Friends – was born from the first FAS Family Summer Camp held in Washington state in August 2003. The camp was modeled after similar camps that have been held in the state of Alaska over the last few years and was the result of a positive collaboration between federal, state and local agencies. I had the great pleasure of being one of the individuals from the University of Washington Fetal Alcohol Syndrome Diagnostic Clinic who planned the camp, as well as attend the camp with my family in my role of family advocate for the university. One of our goals was to provide children with FAS an opportunity to meet and interact with other such children, as well as to provide their parents and siblings with training and support.

The parents who attended the camp were so excited about meeting and sharing their stories, their fears and their dreams with each other that they wanted to not only stay in touch, but to offer those positive feelings to other parents or caregivers of children with fetal alcohol disabilities. The families were also overjoyed at the positive interaction between the parents and the professionals at the camp. And so the FASD Family and Community Support Network was formed.

The parents have maintained almost daily email and phone contact. They have listened and supported each other through difficult school issues, questions about medications, and shared experiences and accomplishments of their children and themselves. They meet once a month for pizza, conversation, hugs, laughter and maybe even a tear or two. One mom drives 7 hours one-way to attend these support gatherings, and it’s not for the pizza. The group has begun to invite other parents and caregivers to join with them to share their experience and to offer mentorship. This group of caregivers is made up of birth parents, foster parents, adoptive parents and relative placements. But they all share their love for their children with FAS. They are very special people and I am very lucky to be part of this experience.

FASt Friends has the desire to provide and promote positive interaction, cooperation and collaboration between families, professionals and community members. They want this to be a mutual process for the ultimate benefit of everyone involved, but especially for the individual with alcohol-related disabilities.

The support network is already awaiting the next family camp. In the meantime, they held a holiday celebration in December that included not only parents, but also siblings and affected children, as well as some of the camp staff; the guests of honor were the “Man in Red” and Mrs. Claus. It was a huge success. There are plans to have these “mini” family camp experiences every three or four months, along with adult-only meetings that will provide support and opportunities for continued sharing, as well as educational and training opportunities. There is also an email listserve and Web site in the creative beginning stages. Some of the mothers have discussed a “moms’ weekend out” by renting rooms at a local hotel to eat, swim, do nails, scrapbook and watch a tear-jerking movie.

I believe that there will be no limit to the possibilities for this unique and motivated group of individuals. They see the power in cooperation, the success of collaboration and the potential for success. They understand that “Families, Awareness, Support, and Dreams” are their goals. I am honored to be part of this great beginning.

For more information, please call 206-940-2832 or email FASDSupport@aol.com

FASt Friends Network members gain strength from collaborating

The following letters are from members of the FASt Friends community.

 

My husband and I have adopted five children, ages 13, 13, 8, 5 and 4, and are in the process of adopting our 21-month-old foster son. Four of our six children were exposed to drugs and or alcohol in utero. Life with six children is very busy and also a lot of fun. We have good days and bad days. The hardest part of raising children with alcohol effects is remembering how our kids’ brains function, and working with the schools. The schools don’t understand what our kids need or how hard it is to do school work with them at home. I had never felt like such a failure as a parent until my kids started school in their current school district. I am treated like a second-class citizen at the school. My saving grace for dealing with all this is the new FASD support group that I joined. I am able to talk with or email my new friends and get all my frustrations out or ask for advice. We all live with kids with an alcohol disability – so when I tell my story I am not belittled, I am understood, and I get feedback. The support group truly makes me feel empowered. --Donna*

I'm a single mom of a beautiful 7 year-old little girl named Maria*. I was her foster mom at birth and later adopted her. Being a single mom to a child with FAS is quite challenging. It's such a relief to have the FAS support network – parents of children with similar special needs. The group attended a Christmas-with-Santa party at Alfy's Pizza for the local families affected by FAS. I was so happy that we could go to a party where, if Maria did something different from a normally developing child, it was okay. It was okay that she played under the table more than anywhere else. It was okay that she banged her head on the table in frustration when she couldn't get her shoe on. It was okay when she so innocently lifted up her dress for all to see to scratch her tummy. It was okay that she hugged people that she didn't even know, like they were her best friends (and most hugged back with just as much enthusiasm). I could relax, knowing that the other parents understood. I didn't get any stares, because their kids were doing the same kinds of stuff. For the most part, Maria and I are doing wonderfully. I get by with a good sense of humor and a lot of patience. And I am so thankful for the FAS support network (thank God for email!). People are always telling me how lucky she is to have me. But I see it differently. I am so blessed to have this beautiful, funny affectionate little girl. We make a good team. --Linda*

I would like to share a little bit about the support and education and new family that I have found since we were invited to the first FASD summer camp in August 2003. We met at a little summer camp, just about 10 families, and I was scared going in. At first, I kept hearing all the women there talking about how their kids were adopted or were their foster children, and here I was, a biological mom to a child with FASD. I thought that they might look down on me for drinking while I was pregnant with my daughter, who is now 8 years old. I have never been so wrong in my life. These women welcomed me with open arms, and now have become a part of my family. We learned more about parenting kids with FASD and how to handle their behavior issues while also learning that we were not the only parents dealing with these issues. Since leaving camp we have formed a parent support group and meet once a month. We have also reached out to newly diagnosed families, and want to be a support to them and provide then resources like we have done for each other. So don't think that the diagnosis of FASD means that you are all alone in life –there are people out there that will support you and help you in any way that they can. I thank the support group for everything they have done for my kids and me. They all inspire me in so many ways. --Karen*

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FASD management: A work in progress

by Kieran O’Malley

It is now generally accepted that FASD is a chronic condition. It is really a neurodevelopmental and neuropsychiatric disorder that can appear in infancy, with or without facial dysmorphology, and progress into adulthood. The patients with FASD present with symptoms of common psychiatric disorders such as ADHD or depression, and with behavior that is unusually impulsive and devoid of judgment that might be expected given their age and general intelligence. They have complex learning and language problems not explained by intellectual deficits.

These patients continue to challenge conventional treatment programs. They do not respond predictably to medication. They are often labeled as Oppositional Defiant or with a Conduct Disorder in childhood as they appear to be deliberately misunderstanding questions. Generally, there is a lack of understanding of the pervasive language and learning problems that show themselves in subtle but important ways. Children, adolescents and even adults with FASD do not appear to have words for emotions (a condition called alexithymia) and so show their feelings through physical symptoms or aggressive behavior. In addition, children and adolescents with FASD often do not understand the context of social situations and therefore commonly misrepresent themselves. This lack of social cognition and social communication can lead to many misunderstandings and sometimes place the client with FASD in a compromising position. Clearly this complex set of disorders requires new approaches in management.

Persons with FASD not infrequently present with apparent classic psychiatric disorders (such as ADHD) along with their neurodevelopmental disorder. At times conventional psychopharmacological approaches may be helpful in controlling certain symptoms. The multi-modal approach— combining medication and psychological approaches to symptom management—has been pioneered in the treatment of ADHD and its principles can inform and guide joint treatment approaches in FASD, as well.

At the current time there are, unfortunately, no standard practice guidelines for management of FASD, either medical or non-medical. Many anecdotal stories abound with evidence of this or that treatment being helpful to an individual child, but no researched integrated management strategies have surfaced. This is surely a time to advocate for holistic management principles that will lead to specific approaches that can be researched. For instance, a marriage of habitually used medication with various sensory integration, psychological and language therapy approaches might be defined and then used as a protocol for studying effectiveness in addressing specific behaviors and symptoms.

The array of management strategies for other neurodevelopmental disabilities such as autism have shown the way forward; perhaps some of the collective energy and ideas from this field can inform, and guide, approaches and funding for research for FASD. Family advocates who have practical experience in coping with the problems of youth with FASD at home may be the best at generating ideas for management, be it techniques of providing structure, exercises that enhance language skills, or finding sources of financial support. Physicians and other professionals who work with youth with FASD and their families are in a position to generate standards for the safety of medications, providing early diagnosis and for performing novel treatment methods such as techniques for sensory integration.

After 30 years of FASD recognition, management is still a “work in progress,” but it needs to be recognized as the future for clients, families, and mental health and language therapists. The future of FASD is truly NOW. It lies in the measured, scientific evaluation of a multi-modal management approach. The field of FASD management research must catch up with already studied approaches for conditions as ADHD and autism. It is time that the psychiatric condition associated with Fetal Alcohol Spectrum Disorder be defined with set criteria, that these be recognized by the committees charged with revising the Diagnostic and Statistical Manual for Mental Disorders, and that, with this foundation, research on services begin in earnest.

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Meet the FASIS board of directors

From its start in 1991, Iceberg has been a collaboration of professionals
and family members who, like its readers, are keenly affected by and involved in FASD issues. The FASIS board includes adoptive and birth parents of children with FAS, professionals who treat patients with FASD and researchers who continue to develop our understanding of the affects of prenatal alcohol use. Their ideas and input shape every issue of Iceberg and of the larger dialogue about FASD and related disorders. We present our current board members below.

Sandra Clarren

Sandra Clarren has worked with individuals with FASD, their families and the support workers that assist them for more than 15 years. Since the early 1990s she has had a range of roles including workshop presenter, researcher, writer and diagnostician.

Sandra received her BA in psychology and her MA in education. Initially she was a special education resource teacher and diagnostician in the United States and England. After receiving her doctorate she has worked as a school psychologist in private practice and in public and private schools in the Puget Sound area, at Children’s Hospital in Seattle, and at the University of Washington as a founding member of the Fetal Alcohol Syndrome Diagnostic and Prevention Network. Most recently she has been a consultant and lead writer on Alberta Learning’s teacher guide: “Building Strengths, Creating Hope: Strategies for Supporting Students with Fetal Alcohol Spectrum Disorder.

Paul Connor

Paul Connor is an Acting Assistant Professor at the Fetal Alcohol & Drug Unit of the University of Washington’s Medical School in Seattle. He received his undergraduate degree in Psychology at the University of Washington then received his Ph.D. in Clinical Psychology and Neuropsychology from Brigham Young University. Paul completed his internship in Neuropsychology and Clinical Psychology while at the Henry Ford Health System in Detroit. He has specialized training in neuropsychological assessment, neuroimaging research and mental health treatment.

Paul has been a member of the Fetal Alcohol & Drug Unit at the University of Washington since 1995 where he began as a Post-Doctoral Fellow. He is the Project Director on a longitudinal prospective study of the long-term effects of prenatal alcohol exposure. He serves as a Co-Investigator on a study using structural MRI and neuropsychological tests to assess adolescents and adults with FASD. He is also a Co-Investigator on a study that is applying the findings from the adult and adolescent MRI study to a sample of highly exposed infants. In this study infants highly exposed to alcohol and control infants are given a cranial ultrasound within the first few months of life and the shape of their corpus callosum is measured. Most recently, he became the Principal Investigator on a study using functional MRI to measure brain activity in adults with FASD.

His research interests include the use of neuroimaging technologies, neuropsychological testing, and mental health assessment with prenatally alcohol-exposed populations. He has given trainings on the cognitive, social and emotional impacts of FASD to medical, psychological, and forensic professionals and affected families around the country. Paul is a new member of the FASIS board, joining in 2003.

Heidi Connor

Heidi Connor is a technical writer for a Seattle-based software company and the Webmaster for two nonprofit organizations, including FASIS. She has worked in various facets of the computer field for the last 12 years, as a writer, web designer, tester, and support technician.

James Fox

James B. Fox has been the president of Fox Electric Inc. since 1973. In 1963 he graduated with a BS from the University of Puget Sound and was a professional with Boy Scouts of America for the next two years. He served on the Board of Directors of the Spastic Children’s Clinic from 1967-1969. He is currently on the Board of Directors National Electrical Contractors Association, Puget Sound Chapter, where he has been serving for 22 years. He joined the FASIS board in 1996. In 1970 he adopted an 8-month-old daughter. In 1990, he heard a radio interview with Michael Dorris describing his son as diagnosed with FASD, and thought Dorris might be describing his own daughter. After a troubling young adulthood, she is now 34 and successfully co-parenting her 9 year old son.

Katy Jo Fox

Katy Jo Fox is the Webmaster and office assistant for the Fetal Alcohol and Drug Unit at the University of Washington in Seattle. She became interested in FAS issues in 1990, after she and her parents read "The Broken Cord" by Michael Dorris, and saw the similarities between the author's adopted son – who was diagnosed with FAS – and Katy Jo's own adopted older sister. Her sister had moved out on her own prior to their introduction to FAS, but this new knowledge brought a certain kind of resolution with the past, and hope via understanding for the future.

As a child, Katy Jo watched her parents try everything from counseling to Outward Bound (a wilderness survival program), in order to change the troubling behaviors her sister exhibited. Keeping her sister's diet wheat- and sugar-free helped control mood swings, but it didn't impact her problems in school and trouble relating to others. It wasn't until she was much older that Katy Jo learned all sisters were not like hers – having a best friend who was in Katy Jo's class instead of her own (7 grades up), not knowing when it was time to stop the "you hit me, I hit you" game, not even understanding how much bigger she was than her little sister. These experiences have helped Katy Jo show empathy and support when talking to/emailing others struggling to understand their own family members, students or friends. Katy Jo enjoys being able to give them hope, as her sister, now 34 years old, is a happily married, wonderful co-parent now succeeding in her second year of college.

After reading "The Broken Cord", Katy Jo tried to tie FAS into every school report or project possible. She knew that she eventually wanted to pursue her interest in FAS, but was not sure what direction to take. After traveling to Germany and Italy in high school, she fell in love with Europe. In 1999, Katy Jo graduated from Seattle Pacific University, where she combined her two interests by earning a BA in European Studies with a minor in Psychology. She has plans to one-day assist with the prevention of FAS in Europe.

Katy Jo began volunteering at the Fetal Alcohol and Drug Unit in 1997, and was hired on as their Webmaster five months later. She joined the FASIS board in March 2000. She is a member of "FASlink", a ListServe about FAS, and "FAS Europe," an online group at Yahoo.com. She also works part time at a thrift store run by Bellevue Christian School, her alma matter. Whenever the opportunity arises, she talks to customers about FAS.

Julie Gelo

Julie Gelo is the legal mother to 13 children ranging in age from 4 to 37 years old. She and her husband Lynn live in Bothell, Washington, with the youngest seven children, and have been licensed foster parents for the last 12 years. Eight of Julie’s children have been diagnosed with fetal alcohol syndrome or related conditions, including the seven who live at home and her oldest birth daughter. She has been in addictions recovery for over 24 years.

Julie has been the Family Advocate for the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network core team at the University of Washington for 8 years. She is also a member of the Master Training Team for the Foster Parent Training Institute with the Department of Social and Health Services/Division of Licensed Resources. She presents workshops and trainings on fetal alcohol syndrome and effective advocacy throughout the United States and Canada. She serves as a steering committee member for the FASD Center for Excellence and is an advisor on many other projects, including a future curriculum and video for birth moms and the addiction field.

This past summer Julie, along with Iceberg board member and diagnostic team member Tracy Jirikowic, planned and held the first annual FASD Family Summer Camp for the state of Washington. From that camp experience “FASt Friends,” an FASD Family and Community Support Network, was formed.

Julie was involved in the production of an educational series on Fetal Alcohol Syndrome entitled “Journey Through The Healing Circle” which was produced and directed by DSHS. This 2-hour series of videos was aired on PBS channels throughout the Pacific Northwest and Canada and made it to the finals for a Regional Emmy Award.

She enjoys reading, music, photography and dancing and is very active with her family in Special Olympics. Her goal for the future is to write a book on FASD sharing families’ stories of courage, hope and humor.

Charles Huffine

Charles Huffine has practiced child and adolescent psychiatry in Seattle since 1975. In his private practice he has specialized in the needs of adolescents and their families, and is actively involved with all issues that relate to teenagers. Though not a researcher, he has been close to the Fetal Alcohol Research Unit at the University of Washington. His special interest in FASD relates to the many adolescents who are presumed to have ADHD, bipolar, or conduct disorder issues, yet also have judgment, impulsivity and educational problems similar to youth with FAS. He has been a leader in acknowledging the high incidence of undiagnosed FASD among troubled youth.

Charley also holds a part-time position with the King County Mental Health, Chemical Abuse and Dependency Services Division as the Assistant Medical Director for Child and Adolescent Services. In this position he participates in policy and program direction for King County's mental health authority; from this work he has taken an interest in system-of-care reform and is a principle in a federal grant program that seeks to promote a wrap-around process to better help families take charge in caring for their troubled youth. He is committed to wrap-around principles as they emphasize family empowerment, individualized and tailored care of children, cultural competence and community-based and coordinated care. His special interest is in helping adolescents and young adults who have been in the system articulate their perspective on the care they have received and add their voice in public policy discussions. Through the grant program, he helped found Health ‘N’ Action, now a nationally recognized program promoting youth voice.

Charley was raised in Seattle, attended the University of Washington and the UW School of Medicine. He trained in general psychiatry at the University of Michigan in Ann Arbor before being drafted into the U.S. Army during the Vietnam War. He served as a drug abuse program leader at Ft. Campbell, Kentucky, for most of his two years of military service. He returned to the University of Washington to complete his training in child and adolescent psychiatry. Charley was involved in social activism as a medical student and psychiatry resident, including working with street kids through the Open Door Clinic in the late 60's in Seattle’s University District. After completing his training, he committed a portion of his professional life to working in public agencies. He served 20 years as a consultant and staff psychiatrist at the Seattle Mental Health Institute, a community mental health center. For five years of that time he participated in a school-based day treatment and mental health services program in the Seattle Public Schools. He also served at Luther Child Center in Everett, the Children's Home Society of Washington, and Friends of Youth, serving in residential and foster care programs. He is still involved at Youth Advocates, a foster care and group home program for youth. He is on the board of Peace For the Streets by Kids From the Streets, an organization that serves street youth on Capitol Hill in Seattle.

Charley identifies himself as a community psychiatrist. As such he believes strongly that community and family issues are vital factors that shape the way that problems manifest in an individual. Children, particularly those hampered by fetal alcohol damage, are vulnerable to adverse social conditions. He integrates his ideas about the importance of social context into all his work with teenagers. This interest has propelled him into national leadership in child and adolescent community psychiatry. He served four years as president of the American Association of Community Psychiatry and remains active on that organization’s board where he promotes policy supportive of youth and their families. Charley includes in his advocacy for youth a more active recognition of the needs of youth with FASD, particularly as they transition to adulthood. He has been proud to serve on the FASIS editorial board where he remains in close touch with leaders in the FASD community, both family members and researchers. He believes strongly in parent-professional partnerships in policy development as well as in treating individual youth; the Iceberg offers him a forum for such collaboration.

Tracy Jirikowic

Tracy Jirikowic has been a pediatric occupational therapist since 1991 and has worked with children in public schools, early intervention centers and other clinical settings. She has been a team member of the University of Washington’s FAS Diagnostic and Prevention Network for the past eight years and is currently involved in diagnostic, research and training activities in the field of alcohol-related disabilities. Tracy also co-organized an FAS family camp in Washington state in August of 2003. She has her Ph.D. in special education/rehabilitation medicine from the University of Washington. Her research interests include understanding sensory processing and integration issues, and early learning and development in children with FAS and alcohol-related diagnoses.

Kieran O’Malley

Kieran Darragh O'Malley, MD is from Belfast, Ireland. He qualified in medicine from University College Dublin, and is a Board Certified Psychiatrist and Board Eligible Child Psychiatrist. He has been affiliated with the Fetal Alcohol and Drug Unit in Seattle since 1997, involved in teaching and research. Currently, he is Acting Assistant Professor in the Department of Psychiatry & Behavioral Sciences, as well as Adjunct Faculty in the Henry M. Jackson School of International Studies. In addition, he has a small consultation practice in Calgary dealing with FASD and Autistic Spectrum Disorder patients. This will be the seventh year that he directs a staged reading of James Joyce's Ulysses at the UW. He has three children/young adults, Darragh, Nora and Brendan Joyce.

Ann Streissguth

Dr. Ann Streissguth is a Professor in the Department of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine in Seattle. She received her master’s degree in child development from the University of California at Berkeley, and her doctoral degree in clinical psychology from the University of Washington. Ann is a licensed clinical psychologist with a specialty in behavioral teratology. She has worked with patients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) and their families and their communities for 30 years, and is one of two founding FASIS members still serving on the board of Iceberg.

Ann currently directs the Fetal Alcohol and Drug Unit of the University of Washington Medical School in Seattle, which has investigated many types of prenatal influences on later development in offspring including alcohol, tobacco, cocaine, aspirin, acetaminophen, and rubella virus. Prior to this work Ann studied the impact of poverty, preschool and caretaking experiences on child development. In all, she has published over 160 scientific papers, three books, and a slide-teaching curriculum on Alcohol and Pregnancy. Her most recent books are: Fetal Alcohol Syndrome: A Guide for Families and Communities, Paul H. Brookes Publishing Co. and The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities, University of Washington Press.

Ann and her colleagues have been actively involved in research on preventing FAS and FAE. In 1978, she collaborated with Dr. Ruth Little in a 3-year federally funded project to develop methods to intervene in female alcohol abuse during pregnancy and prevent FAS. In 1989, Ann and colleagues developed and evaluated the impact of a model advocacy program ("Birth to 3") for helping high-risk women for three years after an alcohol- or drug-exposed pregnancy. This program is now called the Parent-Child Assistance Program (P-CAP) and under the direction of Dr. Therese Grant, has been funded at four Washington sites by the state legislature since 1997 and replicated at 12 sites in other states and Canada. For the past 18 years, Ann and colleagues have worked with Native American Communities and the Indian Health Service to provide FAS workshops and direct consultations to American Indians and Alaska Natives.

Since 1974, Ann has been the principal investigator of the Seattle Study on Alcohol and Pregnancy (a longitudinal prospective study of the long-term effects of social drinking during pregnancy) funded by the National Institute on Alcohol Abuse and Alcoholism (NIAAA). This ongoing study finds long-term neurobehavioral consequences of prenatal alcohol exposure and recently won an NIH Merit Award. In 1992 she began a major research project funded by the Centers for Disease Control on secondary disabilities in patients with FAS and FAE and associated risk and protective factors, which culminated in an international conference in Seattle in 1996. Most recently Ann, Dr. Fred Bookstein and colleagues developed morphometric/neuropsychological methods of detecting adolescents and adults with FAS/FAE from MRI and neuropsychological test performance.

In 1985, Ann was co-recipient with Dr. Paul Lemoine of France of the International Jellinek Memorial Award for Advancement in the Field of Alcohol Studies. In 1987, with Dr. Ruth Little, she received an award for outstanding contributions from the American Medical Society on Alcoholism and Other Drug Dependencies. In 1992, the National Council on Alcoholism and Drug Dependence presented the Silver Key Award to Ann for her "outstanding contribution and research on FAS and FAE". In 1997 she was awarded the University of Washington Outstanding Public Service Award; and the KINDER award for outstanding contributions to the well being of children at risk from the University of Texas. In 1998 she received the Rosett Award for her outstanding contributions to FAS research. In 2000 the New York State Office of Alcoholism and Substance Abuse honored her with one of their eight "Women of the Century" Awards. In 2002 the American Psychological Foundation awarded her a Gold Medal for Lifetime Achievement for Psychology in the Public Interest. In 2003 the National Organization on FAS presented her their Excellence Award for her dedication and pioneering contributions to the fight against FAS. Most recently, the Neurobehavioral Society, the Teratology Society and the Toxicology Society selected her for the 2003 "Decade of Behavior" Distinguished Lectureship, given in June 2003.

Marceil Ten Eyck

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.

Prior to opening her private practice, Marcy worked in a community mental health agency as a staff member of the anger management and domestic violence team, then as a family counselor and coordinator of the family program at an inpatient treatment center for chemically dependent women. She holds a Masters of Counseling degree from Seattle, University; is a Licensed Mental Health Counselor in Washington state, a Washington State Certified Chemical Dependency Counselor, and a Nationally Certified Master of Addictions Counselor.

Marcy has lectured extensively about Fetal Alcohol Syndrome and Fetal Alcohol Effects to various groups throughout the United States and Canada. She acts as an FAS consultant to alcohol and drug treatment agencies, schools, social service agencies and to other counselors. As a staff member of the Fetal Alcohol Syndrome Diagnostic Clinic at the University of Washington, Marcy assisted in providing resources and counseling support for family members during the often painful process of securing a diagnosis of FAE or FAE. She was a member of the King County Task Force on Prevention of FAS/FAE, and was a member of the steering committee for a research grant at the Pregnancy and Health Clinic, University of Washington, researching secondary disabilities sustained by individuals with FAS or FAE. Ms. Ten Eyck is currently a member of the steering committee for the National FAS Center for Excellence in Washington DC.

As a founding member of FASIS, she has written numerous articles for Iceberg. She and her two daughters have written chapters for the book Fantastic Antoine Grows Up, about older adolescents and young adults living successful lives with FAS/FAE.

As the mother of two daughters, one with FAS and the other with FAE, Marcy has a special and personal interest in finding ways to successfully parent, educate and prepare these challenged individuals to live to their fullest potential. In 1991, she co-founded the first parent support group in Washington state and continues to work with families to help them deal with overwhelming emotions and to cope with the day-to-day impact of this syndrome in their lives.

In November 2001, Marcy was chosen to receive the Nichols Leadership Award, an endowed award presented annually to a person or group in the community who has demonstrated consistent advocacy on behalf of the needs of chemically dependent women and their families.

Marcy has been in recovery from chemical dependency for over 23 years.

Janice Wilson Vaché

Janice Wilson Vaché served as the Iceberg’s editor and designer from 1996 until 2001. With Iceberg’s change from paper to an online newsletter, she returned as editor in late 2003. A freelance writer and editor by trade, she became interested in FAS issues while working at the March of Dimes Western Washington Chapter several years ago. She is currently volunteering with Feed Washington, a new organization committed to feeding hungry kids in Washington state.