About Us




April 2004


Families Moving Forward: Promoting confident, creative parenting of challenging children

by Heather Carmichael Olson, Ph.D., and Sandra G. B. Clarren

Once a family raising a child with FASD has moved through the process and received an alcohol-related diagnosis, they typically ask, “But what can I do to help my child with all the learning and behavior problems he shows at home, school, church, and on the playfield? Will his diagnosis make any difference?”

Up to this point in time, there have been limited answers to these important questions. Professionals have been unsure what to advise or are only able to suggest the usual techniques, and other parents have only had collected wisdom to share. Systematic intervention research has not been available. But in 2001, the Centers for Disease Control and Prevention (CDC) funded a group of the first research projects to provide this information. These research projects aim to provide an initial investigation of the efficacy of interventions aimed specifically at the FASD population.

The Families Moving Forward project, an innovative intervention research study based in Seattle, Washington, is one of these CDC-funded projects. The Families Moving Forward model shows promise in helping to determine and address the needs of children with FASD, their parents, and the school and community professionals who work with them.

The primary researchers, Heather Carmichael Olson, Ph.D., and Susan Astley, Ph.D., from the University of Washington FAS Diagnostic Prevention Network (FAS DPN), are conducting this four-year pioneering study, which will be completed in September of 2005. Dr. Carmichael Olson, as Intervention Director, is the originator of the intervention. Along with an excellent and caring intervention team, she designed the project to provide individualized consultation to caregivers, and developed a research component to provide an initial investigation of the efficacy of this protocol for caregivers and children with FASD.

The Families Moving Forward research project has two basic aims. First, the project is designed to clearly describe a sample of alcohol-affected children who present a wide range of behavior/learning concerns, and to understand the characteristics of their caregivers and the needs of these families. As part of the project, all child participants are given comprehensive assessments, and their parents are interviewed and asked to rate their child and other family characteristics on standardized instruments. One guiding principle of Families Moving Forward is that the parent’s viewpoint is essential to creating appropriate interventions. Systematically gathering and interpreting descriptive data should make the tasks of assisting families raising children with alcohol-related disabilities and worrisome behavior problems less ambiguous.

Second, the Families Moving Forward project is focused on developing a new, research-based intervention approach. This approach provides education, support and behavioral consultation to caregivers of children with FASD who show significant cognitive and learning disabilities and challenging behavior problems.

The intervention project and many of the materials used in the project were designed by Dr. Carmichael Olson and the Families Moving Forward intervention team (Allison Brooks, Kathleen Lehman, Minu Ranna, and Julie Quamma). The team, along with consultants from the FAS DPN and elsewhere, drew from empirically supported research in many fields to organize this approach. A variety of strategies and techniques were incorporated into the program that provides a “flow” of caregiver support, education, advocacy assistance, community linkages, and low-intensity, sustained behavioral consultation, all tailored to the individual needs of families raising children with FASD. Specially trained support specialists provided the intervention in twice monthly, 90-minute home visits. Targeted school consultations were also provided, and targeted phone consultations were given to some community providers also working with the families. The intervention involved 17 to 20 sessions over 9 to 11 months.

The project, which is still underway, involves 52 enrolled children between the ages of 5 and 11 years of age. The participating children have all been diagnosed with alcohol-related disabilities at the University of Washington FAS DPN clinic. In the group selected for the study, 25 percent of the children met the full FAS criteria and 75 percent met the criteria for Alcohol-Related Neurodevelopmental Disorders. As a group, the children demonstrated average intelligence overall, but all individual children had evidence of clear neurological impairment. To be included in the project, the children could not show other, non-FASD birth defect syndromes affecting cognitive function, and could not show marked global cognitive impairment or serious conduct disorders. Although some of the children had experienced considerable environmental risk early in their lives, at the time of study enrollment they were all living in stable homes. The children’s home placements varied; some were living with their birth parents, while others were adopted or in foster homes. The study was designed so that half of the group of children and their caregivers received the new, uniquely developed intervention (in addition to their existing community services), while the other half were involved only in the community standard of care.

The project is still in progress, but it has received great support from study participants. Almost everyone starting the intervention has completed the full 9 to 11 months of services. The intervention was clearly needed. When initial intake data was summarized, families did show a need for support. All the children had clinically concerning levels of acting-out behavior as measured on rating scales. As a group, the caregivers reported very high levels of child-related stress.

The Families Moving Forward intervention model provides ongoing support and aims to assist development of caregiver understanding and skills. Crisis intervention is not meant to be a central part of the model. With individualized, meaningful, targeted and sustained support from specially trained professionals, the hope is that a caregiver will feel less stress, better understand the child, and be able to more successfully shape their child’s environment. There are other study goals as well. But the real goal is for caregivers to feel more confident and creative in parenting their challenging children with FASD, and feel ready and able to answer the question, “Now what do I do?”

Heather Carmichael Olson, Ph.D. is a licensed psychologist in the UW FAS Clinic, and faculty member in the Division of Child Psychiatry in the University of Washington School of Medicine. She has worked directly with many families raising children with Fetal Alcohol Spectrum Disorder. She is currently the originator and Intervention Director of the Families Moving Project, an FAS intervention project under the auspices of the FAS Diagnostic and Prevention Network.

Sandra Clarren is a school psychologist in private practice who has worked with individuals with FASD, their families and the support workers that assist them for more than 15 years.

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Prison: A warehouse for individuals with FASD

by Paul Connor, Ph.D

As children with Fetal Alcohol Spectrum Disorders (FASD) grow into adolescence and adulthood, problem behaviors that may have been only irksome when they were young become behaviors that may, as adults, bring them in contact with the legal system. These contacts can, and unfortunately often do, result in sentencing to jails or prisons.

At the University of Washington in Seattle, a team headed by Dr. Ann Streissguth interviewed parents and caretakers of children/adults with FASD and asked if their children had encountered troubles with the law during their lives. She discovered that 61 percent of adolescents and 58 percent of adults with FASD had been in legal trouble. Furthermore, 35 percent of those with FASD over the age of 12 had been incarcerated at some point in their lives.

Looking from the perspective of the legal system, Dr. Christine Loock in Vancouver assessed 287 children and adolescents who were admitted to the Inpatient Assessment Unit of the British Columbia Juvenile Justice System. She conducted physical and psychological exams of these young inmates and found that almost a quarter of these children were diagnosable with either FAS or FAE. The great majority of them were diagnosed with FAE, showing few or no outward signs of damage although they had cognitive impairments.

Is prison the right place for people with FASD? There are certainly many negatives inherent in being incarcerated, but these negative elements are magnified for those with FASD. They are isolated from the support of their family and appropriate peers, but those with FASD particularly need the support of family and peers to help them successfully function and minimize inappropriate behaviors. They are unable to participate as productive members of their community. And, most dramatically, people with FASD are at much higher risk of victimization while in prison. People with FASD tend to have a strong desire to please and can be quite gullible; these features make them easy marks for predators behind bars.

This same gullibility and desire to please, especially to please authority figures, can also lead to false convictions. There have been a number of case reports indicating that individuals with FASD may tell police officers what they think they want to hear, not what actually happened. They may even confess to crimes they did not commit.

When a person with FASD commits a crime, it may be because the person did not fully understand the consequences of their actions. Such a person, who does not grasp the cause and effect of their actions, may not be able to benefit from the lessons learned by being punished for unacceptable behavior. They may also be unable to assist their attorneys in their own defense, and may therefore be sentenced to prison without adequate discussion of alternative placement options.

There are, however, two positive features of prison for those with FASD—structure and predictability. Inmates’ daily lives are dictated by structure. They are given a strict routine of when to leave their cells in the morning, when they are allowed recreation time, when to go to meals, and when to return to cells. The rules of conduct are explicitly given and consequences of a rule breach are clearly identified. In situations like this people with FASD, who function best in a structured environment, often make model citizens and inmates.

It is a shame that appropriate alternatives to prison, emphasizing the positive elements of prison with its structure and predictability, while eliminating the negative aspects, are neither readily available nor often sought in cases of people with FASD. Appropriate alternatives to prison for these individuals can include placements in halfway houses, group homes, treatment centers or electronic monitoring at home. In all of these cases, emphasis must be placed on establishing an environment that is well structured with predictable rules and consequences. In these alternative settings the person with FASD can continue to participate in the community but his or her behavior will be more closely monitored.

The need for appropriate treatment of people with FASD who have run into trouble with the law has been the recent focus of Kay Kelly, the Project Director of the FAS/E Legal Issues Resource Center at the University of Washington’s Fetal Alcohol and Drug Unit. She and Professor Eric Schnapper of the UW Law School have compiled a listing of legal cases that have involved people with FASD, as well as concrete recommendations for dealing with police. For those seeking resources and contact information, visit http://depts.washington.edu/fadu/ and click on the “Legal Issues” tab. By increasing awareness among all individuals involved in legal issues, perhaps we can reduce the disproportionate number of teens and adults with FASD in our prisons and juvenile detention centers.

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

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Sneaking in the back door—Basic strategies for developing social skills in teens

by Tony Van Zeyl, M.S., CCC-SLP

Teens diagnosed with disabilities such as FASD, ADHD, high-functioning autism and Asperger’s Syndrome encounter a variety of challenges throughout their high school years. Each disability offers its own unique roadblocks and hurdles. The first step to breaking through any roadblock is recognizing its existence; if an awareness of a challenge is denied or ignored, all of the skill training in the world is for naught.

There are certain challenges that can be quantified in objective and impersonal ways. For example, difficulties with reading comprehension, math computation, and life skills such as cooking, shopping, and bus riding can all be practiced and calculated using checklists or other standardized measures. These standardized measures not only assist the teachers and parents in targeting areas of need, but also help the student to build an awareness of their own limitations—it helps them to see the roadblock. As this awareness is heightened, however, self-esteem can be negatively affected; the use of objective measures makes it an easier pill to swallow by discussing the results of these tests. It is the test, not a teacher or parent, that is pointing out where the breakdowns occur.

What happens when one of the major challenges is in the areas of social communication and social interaction? We all use social skills whenever we interact with the world in general. Social skills reflect basic parts of our personality—how we talk, what we say, how we look at people, and how we get what we want—just to name a few. There are few objective measures of social skills that would allow for an impersonal assessment of skills. The measures that do exist have difficulty assessing functional skills. For example, the teen may be able to answer test questions about situations concerning how to act or what to say, but in real life they are unable to appropriately deal with the situation. Constructive criticism of social skills can deal self-esteem a major blow and lead to denial and sometimes outright rebellion. This constructive criticism can be viewed as a personal attack without objective reasons to back up the statement. How can an awareness of social challenges be built without tearing down a teen’s self esteem?

The teen needs to know you are a person with opinions and perceptions that are valid. It is easy for him to say, “You just don’t understand what it is like to be a teenager,” and write off everything you say. Your first job is convincing the teen that you DO understand what it is like to be a teenager. Remember what it was like to be a teenager and how difficult it was to accept guidance from adults. For the teen to accept your help, he needs to trust that you understand him. To build this trust and understanding, you must establish a solid relationship based on mutual respect. This process of relationship building can help teens begin to build an awareness of social skills.

I have found the following strategies helpful when building a relationship with teenagers.

  1. Take a GENUINE interest in their interests: If you would like to help build social skills, you have to get to know the teen better. You need a context in which to communicate. So, look for things in common to talk about and don’t put down the interests of the teen. All teenagers are exercising their independence, and if you would like to help them, you need to get to their level. Ask them to share their interests with you. Do a little research and find out where Justin Timberlake came from, who the White Stripes are, or what an RPG video game is. The key is to be genuine. Be who you are—don’t go out and buy the new Evanescence album and dye your hair purple unless you are a person that would do that anyway. Teens can sense an adult who is trying too hard from a mile away. However, if you take a genuine interest in their lives, you are modeling for them how to take an interest in others. By stepping outside out of your comfort zone, you are modeling flexibility and perspective taking. She might even take an interest in things that you like.

  2. Don’t be scared by their music or movies: Whether you like it or not, the media is a powerful force in the lives of all teenagers. When an individual has difficulty with social skills, it becomes even more powerful because it is sometimes the only way that they connect with the world. Whether it is through video games, movies, music, TV shows, or the Internet, they are learning ways of interaction from these mediums. Look and listen for things that you enjoy and share them with the teen. You may be shocked by the use of offensive language or images; nonetheless, as you make comments like, “when I was a kid . . . ” remember how offensive Led Zepplin, the Beatles, Elvis Presley, and Bob Dylan were to many people a few decades ago. Remember nothing makes something “cooler” in the eyes of a teenager than that which drives adults crazy. I am not suggesting that limits need not be placed on what they watch, but just remember that times change. Again, you are outside of your comfort zone, and the process of overcoming your discomfort is an important one for the teen to observe.

  3. Discuss the merits of what they like: Regardless of their interests, I would argue that there are always positive aspects to discuss. Many offensive movies contain humor that is based on satire and parody. Talk about what makes a game interesting or challenging. Can they explain what makes a movie funny or what makes a song a great one? Maybe you can find parallels between some of your own interests and theirs, which can open up a whole world of interaction. Plus, social skills are everywhere, and it is likely that you will find examples in music and movies that resonate with the ideas that you are trying to convey.

  4. Talk about your own social challenges: Social skills are rarely directly taught in school; consequently, each one of us has learned about how to interact with the world in our own way. Be honest about challenges that you have had over the years and challenges that you currently have in the workplace or with friends. For example, talk about how you dealt with the person at work that always complains about his spouse when you are trying to get work done.

  5. Ask the teen for advice: If you ask a teen for advice, the teen learns that his opinion is valid and feels respected. You get to model how to ask for help and get a glimpse at problem solving skills. The teen gets to hear about the consequences of certain behavior. For example, if the teen advises to tell your coworker to “shut-up” or “kick his butt,” don’t just tell him he is wrong. Talk about the realistic outcomes to those actions. If similar situations arise in the lives of the teen, remind him of the advice that he gave to you.

  6. Stay in contact with teachers and parents: When working toward improving social skills, getting a full picture of the student is very important. Teachers and parents need to open the lines of communication. Students can act very differently at home and at school. A quiet student at school may be rebellious and difficult at home or vice versa. Additionally, in order to preserve self-esteem, a teenager may not choose to share her challenges from another context without some prompting. The biggest challenge here is not to destroy the trust of the teenager by making her feel “watched” or too closely monitored. Keep the teen aware that the lines of communication are open and why they are open. When you become aware of certain challenges, recognize the difficulty of dealing with a problem and listen to the strategies the teen has used to solve the problem before offering alternate solutions.

Keep in mind that none of these strategies will work overnight. Everything takes a great deal of time and patience. There are many strategies that are effective in improving social skills such as role-playing, peer modeling, support groups, and skill practice. However, without a desire to improve skills, it is extremely difficult for the teen to buy into the concept that they need to learn any of those strategies. By using the ideas contained in this article, you are creating a safe environment for the teen to begin work on improving his or her social skills. Hopefully, in the process, you will learn more about yourself and deepen your relationships with your children, students and maybe even your peers.

Tony Van Zeyl, MS, CCC-SLP is a speech-language pathologist who has taught social communication classes to teenagers. Currently, he works at Carla Brooks & Associates, a private social communication clinic in Shoreline, Washington, where he facilitates groups for kids with challenges in the area of social skills in addition to providing individualized therapy. For more information about the clinic, visit www.cabrooksandassociates.com, phone 206-546-9595, or email Tony directly at tony@cabrooksandassociates.com.

In the next issue of Iceberg, Tony Van Zeyl will describe his work with a peer group of adolescents with FASD that are exploring and learning social skills together.

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Poem: Can’t Stop Me

by Debra C. McKillop

As deep as the mind may be,
There’s no hole that will swallow me,
No mountain nor ocean that will out concur me,
There’s no such rock big enough to break me,
And even in the darkness I can still see.

If I try there’s no loss for I will always succeed,
There’s no purpose that can defeat me.
No words you can say that will take away my possibility,
And even temptation’s I will never allow negativity,
All the trapped depression Iv released as positive energy.

Not all the pressure of any nature can force me,
No man will I let hold onto my future’s key.
I will not crumble over society,
Cave into images in magazines,
For I will not be jealous or have envy ,
I am happy just being me.

I will never rely on just reality,
But wont be mesmerized by my fantasy.
Fear can’t capture me
No matter what that fear may be.
No emotion I may have will drown me,
For I will ride the waves of life’s big sea.

If I fall I will get off my knees,
Stand up tall, constantly.
Nothing will break my self-esteem,
No matter how hard life can and will be

Debbie McKillop is an 18 year old with Alcohol Related Neurodevelopmental Disorder (ARND) who lives in Calgary, Canada.

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In time we are unveiling more of the iceberg

by Marcy Ten Eyck

The first issue of Iceberg was printed and distributed in February 1991. According to an article by Barbara Von Feldt in that first issue, the Fetal Alcohol and Drug Unit (FADU) at the University of Washington in Seattle had received more than 600 letters from across the United States and Canada requesting information and help for their loved ones with FAS/FAE. The events preceding this influx of mail were the publication of the book The Broken Cord by Michael Dorris that featured Dr. Ann Streissguth as a source of information on FAS, and the ABC 20/20 television segment on FAS featuring Dr. Sterling Clarren and Dr. Streissguth, both from the FADU. These letters had the same request, over and over: “Please help us with our situation—we are desperate for information in dealing with FAS/FAE.”

One response to these cries for help came from Dr. Streissguth, who, along with our first editor Dale Leuthold, called together a group of individuals already dedicated to finding answers. Her proposal: to create an informational newsletter to reach out to as many people as possible, both parents and professionals. Were we interested? Absolutely. The founding members of Iceberg included professionals and parents such as Donna Burgess, Sterling Clarren, Diane Davis, Dale Leuthold, Richard McKenzie, Sandra Randels, Ann Streissguth, Marceil Ten Eyck and Barbara Von Feldt.

In 1990, this group formed the Fetal Alcohol Information Services (FASIS) of Washington State, which was incorporated as a non-profit, non-discriminatory community organization. We agreed that, although the newsletter would be our first project, we could organize other information-disseminating events such as conferences, and advertise a meeting for parents that we hoped would materialize into an ongoing parent support group. We also agreed that we would edit each Iceberg issue as a group, and that decisions would be made on the basis of group consensus. We have maintained this policy to this day. The following statement by our editor on the front page of the first Iceberg issue in February 1991 speaks to what we wanted this publication to be:

“The logo (an iceberg) symbolizes a concept that applies both to Fetal Alcohol Syndrome/Fetal Alcohol Effects (FAS/FAE) and to the powerful social, political, and personal ramifications that are associated with this disease. As small part of the problem is visible…but the bulk of the problem is obscured and hidden. The focus of this newsletter will be a select group of people. We will be talking to, for and about the problems and issues faced by children affected by prenatal exposure to alcohol AND to the parents, families and others concerned about them. Our focus is simple. The problem is enormous and complex. We will procure accurate information about the symptoms, physical abnormalities, neurological damage, and psychological characteristics of FAS/FAE children. You will see statistics, lists and the dollar costs involved. We will facilitate formal and informal sharing of experiences by members of FAS/FAE families. We will promote formation of parents’ support groups. This newsletter will devote significant coverage to letters and articles by families and affected children, telling their own stories, problems and success. It is important to openly share the intensity of feelings that generate in families when facing the day-to-day frustration of living with FAS/FAE. We will keep track of and inform our readers about the political realities that influence the availability of services to FAS/FAE children. We will publicize activities that promote public awareness of the problem of FAS/FAE. We will salute public officials that support policies of services that are beneficial to the needs of FAS/FAE children. We will keep our readers informed about legislation on both local and statewide levels that has influence on services for these children. We will make available all the information we are aware of about legitimate help available to FAS/FAE children and their families. This will include professional services such as physicians, therapists, social workers, psychiatrists, psychologists and treatment programs that recognize and have experience in the field. We will be specific about advice on government programs, what they are and how to get eligible children and families into these programs. Like an iceberg, the visible portion of the problem gives us warning of hidden danger. We are not sure of the extent of that danger. We don’t know how big it is. We are sure the danger is real, but we are in the process of learning how to best use our resources and energies to fight it. We ask that you join us in this difficult task. –Editor”

After an announcement in the first issue asking for parents to contact us if they were interested in forming a parent support group, we had a huge response, and Diane Davis and Marceil Ten Eyck hosted the first (we think) parent support group about FAS/FAE in this country. From these beginnings, a combination of ongoing support and family-to-family and parent advocacy has flourished. FAS/FRI (FAS Family Resource Institute) emerged from this parent group.

We have evolved editorially from those first days. Reading the above excerpt from our first issue, I noted that we no longer say “FAS/FAE children,” rather, “children (or an individual) with FAS, or FAE, or FASD (Fetal Alcohol Syndrome Disorders).” The terminology changed as we agreed that individuals are people first, and FAS is only a description or diagnosis. I also noted that the focus has changed from just children with FAS/FAE and their caretakers, to all individuals with FASD—children, teenagers and adults. All the rest of the subjects we wished to explore and bring to the newsletter have been tackled, and the Iceberg has fulfilled the dream of the founders. Although the membership of the board has changed throughout the years, our mission has remained constant.

Until the fall of 2003, Iceberg was a printed newsletter distributed by subscription and at trainings, seminars and conferences; wherever people were coming together around the subject of FAS/FAE. As printing a paper newsletter became more expensive and difficult to produce, the board decided to move our publication online, and made the provisions to change. The most important thing, we felt, was that Iceberg could now reach a much larger audience. In December 2003, our first online newsletter was published, and we couldn’t be more proud. We have also always made reprints of Iceberg articles available for a small charge, but now they will be available free on the Internet.

Looking back through the issues of Iceberg, I see a wealth of information. Here a reader can track the FASD history of research, advocacy, politics, and treatment over the past 13 years. We hope that you will continue to enjoy the Iceberg online, and if you are a new reader . . . welcome to our family.

Marceil Ten Eyck is a psychotherapist in private practice, a founding member of the FASIS board, and a mother of two daughters diagnosed with FASD.

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Press release

Iceberg Editorial Board members Kieran O'Malley and Ann Streissguth flew to Washington D.C. for a one-day "summit" on FASD terminology, sponsored by NOFAS in an effort to simplify and clarify current terminology. The following statement was released at a press conference on April 15, 2004. Additional comments about the importance of new terminology are at www.nofas.org.

Historic Agreement Heralds New Era for Prevention and Treatment of Fetal Alcohol Spectrum Disorders (http://www.nofas.org/main/04152004.htm).

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Parent support group advances FASD advocacy in Ann Arbor, Michigan

by Vern and Betsy Soden

Our small support group of parents raising fetal-alcohol-affected children began to meet informally after we met at a local conference on FASD organized by parent Barbara Wybrecht in 1992. Eight years later, our purpose expanded from meeting as a support group to community advocacy.

We had invited the Director of Developmental Disability services at our local Community Mental Health Agency to join us in our support group meetings to explore ways of improving services to fetal alcohol affected clients. From these interchanges we were able to arrange in-service trainings on FASD for community mental health staff, parents and other interested parties, including educators, health, housing and criminal justice professionals, with funding provided by our county’s Community Health Board, augmented this past year by funds from our FAS Diagnosis Clinic.

In 2001, our in-service speakers, with the exception of our keynote speaker Barbara Wybrecht, were drawn from our community, and topics ranged from clinical and diagnostic services, public safety and justice, to living issues (housing, employment and substance abuse). In 2002, we expanded our scope and invited speakers from other states to speak to us about treatment and vocational rehabilitation issues. By fall of 2003, we were able to host professionals in FASD treatment and research from throughout the country. We offered a panel discussion that touched on topics such as behavioral issues in FASD, coaching approaches for affected clients, and parenting children with FASD.

In addition, in 2001 several of us in the community attended trainings sponsored by the Michigan Department of Community Health about giving presentations on FASD. Since then we have spoken to health classes in the public schools, and to staff members of community agencies/organizations such as Head Start, Foster/Adoptive Parents, the Shelter Association, Women Outreach Workers, the Public Defenders Office, drug treatment facilities and the Ann Arbor Police Department, as well as to nursing students, LPNs, foster grandparents and grandparents who are parenting relatives. We learned from local community mental health staff members last year that because of our educational outreach they have added FASD to the list of disorders to watch for when screening people applying for services. And we have heard many professionals assert that information gained from these trainings and presentations will help them look at their clients in a new light.

While our beginnings were small, we feel we have effected real change in our community. We urge parents everywhere to foster in-service trainings for their local social services agencies, and are glad to serve as a resource for such grassroots efforts everywhere. We can be contacted at 734-662-2906 or at betsysoden@juno.com or vsoden@umich.edu.


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FASIS - Iceberg
P.O. Box 95597
Seattle, WA 698145-2597