April 2005

• Here we come again—The third annual FASD Family Summer Camp
• NOFAS Washington: A work in progress
• FASt Friends meeting schedule
• Reunion Island’s Pioneer Health Network for the prevention of FASD

Here we come again—The third annual FASD Family Summer Camp

By Julie Gelo

The cherry trees are blooming, tulips are popping up, allergies are in full swing and we are already almost maxed out on registration spots for the 2005 FASD Family Summer Camp. This camp has been so successful that we have not needed to advertise beyond word-of-mouth referrals and many families are eager to return.

This year’s camp will be held August 24-28, at Camp Volasuca in Sultan, Washington. Camp Volasuca is a program operated by Volunteers of America, and the FASD Family Summer Camp is a collaborative model supported by NOFAS Washington and FASt Friends, the Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network (FASDPN), Volunteers of America, and the SAMHSA FASD Center for Excellence. We expect to serve 18-20 families again, including multicultural, biological, adoptive and foster families, as well as grandparents and other relatives serving as caregivers.

The five-day overnight camp provides a combination of family, child and parent activities. Parents receive 18 hours of workshop education and participate in eight hours of planned family activities. Children participate in recreational and skill-building activities as well as family activities. This camp is so successful because we are able to offer a very low adult-to-child ratio (1:3 at most and 1:1 if needed) thanks to the dedication and passion of so many FASDPN staff, as well as trained volunteers and counselors.

At this time, there are no other opportunities in Washington state for parents and children with alcohol related disabilities to gather together to learn and improve parenting skills, network, and participate in family-oriented activities in a supportive atmosphere. The balance between family, child and parent activities is key to the program’s success. The camp provides children with disabilities recreational and outdoor opportunities that may not be available to them, or that they may be excluded from in their communities. They are grouped with age- and developmentally-appropriate peers in groups with names like the Eagles, Hawks, Deer, Wolves, Bears, and Rabbits. There are also programs for siblings and teenagers affected by prenatal alcohol exposure.

Parent activities include workshops on parenting skills, understanding and advocating for their children’s needs, and managing difficult behaviors. In 2004, we also added a specific networking opportunity for the fathers. The camp environment allows parents to relax and take care of themselves while developing relationships with other caregivers. Camp activities focus on preventing the secondary disabilities of FASD (substance abuse, school failure, multiple home placements and involvement with the juvenile justice system), by strengthening and empowering children and families and increasing their capacity to succeed.

The goals of the FASD Family Summer Camp include the following:

1. To provide access to services and support systems focused on the prevention of the secondary disabilities of FASD.
2. To provide an opportunity for families of children with FASD to gather in a supportive environment to develop and enhance their network of family supports.
3. To provide parents and caregivers with an opportunity for respite, education and networking.
4. To provide children with FASD the opportunity to interact with other children in developmentally supportive, well-supervised recreational and social activities.
5. To provide opportunities for siblings to meet and interact with other siblings of children with FASD.

Evaluation results indicate that the 2004 summer camp was a success. The 22 participating parents gave this event a highly favorable assessment, with positive statements far outweighing the number of complaints.

Key evaluation findings included:

• Camp participants gave the camp high ratings (with averages between 4.34 and 4.74 on a scale of 1 to 5) for addressing the children’s needs in terms of fun, family time, emotional support, comfort with staff, physical activity, and safety.
• The vast majority felt that the amount of family activities (96 percent), children’s activities (86 percent), and parent workshops (86 percent) were “just right.”
• Everyone indicated that they would attend a similar camp in the future and would recommend it to other families.
• The vast majority of participants gave highly favorable assessments of the overall structure, supervision, organization, and safety of the camp, and the activities for children and families.
• Participants considered parent networking, respite and pampering extremely important activities. They felt that meeting and getting to know others coping with the same issues were the most valuable aspects of the camp.
• The children had a lot of fun at the camp. They enjoyed the activities and making new friends. Several expressed the wish to come back next year.
• Participants recommended that future camps address a number of new topics and sessions, and give more details on key issues addressed at this camp.

Follow-up data provided by the nine parents who attended the 2003 camp was also positive:

• Everyone has kept in regular contact with the families they met in 2003.
• Most parents felt that the 2004 camp was better than the 2003 camp.
• As a result of attending the 2003 camp, parents reported the following positive changes:
  • More knowledge about and access to critical services;
  • Improved ability to advocate for their rights; and
  • Decreased stress and increased feelings of competence, resilience, hope, and healing, due largely to the support they were getting from the families they met at the camp.

The above statement says it perfectly – decreasing parents’ stress and increasing their feelings of competence, hope and healing are the reasons we will continue to offer this program. We are hoping to be able to provide researchers and families with the evidence-based statistics to show that the Washington State FASD Family Summer Camp is a replicable model and worthy of best-practice status. We would also like to be able to find the funding sources to offer this camp model in other areas of the state and throughout the country.

So look out everyone, because the Eagles, Deer, Hawks, Wolves, Bears, and Rabbits are on the move, and we’re going places.

Julie Gelo and her husband, Lynn, live in the Seattle, Washington, area with seven of their thirteen children. Eight of their children have been diagnosed with Fetal Alcohol Spectrum Disorder. Julie has been the Family Advocate for the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network clinic for over nine years. She offers trainings on Fetal Alcohol Spectrum Disorder, Self-Care, and Effective Advocacy to a variety of audiences throughout the United States and Canada from the unique standpoint of professional diagnostic team member and parent. She is the Executive Director for NOFAS Washington, the Washington State Affiliate to the National Organization on Fetal Alcohol Syndrome and co-director of the FASD Family Summer Camp held in Washington State.

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NOFAS Washington: A work in progress

By Julie Gelo and Christie Connors

On January 11, 2005, The National Organization on Fetal Alcohol Syndrome (NOFAS) kicked off the year with the announcement of its new Affiliation Program. These affiliations will align the objectives of all involved organizations in order to unify the call for prevention, identification, and treatment of fetal alcohol spectrum disorders (FASD). Among the four new affiliations is Washington state’s new NOFAS organization.

Julie Gelo, the founder of FASt Friends: A FASD Family and Community Support Network, applied to NOFAS to found the State of Washington Affiliate, and work at NOFAS Washington is already underway. The group has filed its Articles of Incorporation for 501 © 3 non-profit status and elected the Board of Directors. The Board of Directors consists of an adoptive parent, a birth mother, a young adult with FASD, and educators, researchers, physicians, social workers and other community members interested in the issues of FASD and those affected by them. Filling the board positions are Ms. Gelo, Executive Director; Christie Connors, President; Allison Brooks, PhD, Vice President; Julia Bledsoe, MD, Secretary; and Tracy Welch, Treasurer. Since filling these roles, there have been several moves to implement new and innovative programs.

The mission of NOFAS Washington is to provide support, education, advocacy, and training on FASD through the positive cooperation and collaboration of families, caregivers, community provides, professionals, and individuals affected by prenatal alcohol exposure. Included in this program is FASt Friends, a support network that meets monthly (see sidebar for more information). In addition to the adult caregivers/community member group, there is a socialization/support group held at the same time for teenagers affected by prenatal alcohol exposure. Three psychologists experienced in the field of FASD facilitate this group.

FASt Friends also offers a listserve support group for those who are not able to attend the group sessions in person. This provides a mechanism for daily sharing of joys, as well as a means to have questions answered or receive input on various topics. By utilizing the model of collaboration between professionals and family members, the members of the support groups are able to access many more ideas and resources than if it was a closed model and focused only on specific issues. A Web site is currently under construction and will soon offer links to other valuable resources; please visit NOFAS Washington.

Other current and proposed programs include the third annual FASD Family Summer Camp and quarterly family activity events like the Weekend Retreat held December 2004 at Camp Brotherhood in Mt. Vernon, Washington. The last day of this retreat included a winter bazaar where the young people could sell craft items they had made during the previous day’s activities. The bazaar brought in more than $800 for the 2005 FASD Family Summer Camp.

The NOFAS Washington group is also forming a parent sponsorship model to link newly diagnosed families with more experienced families so they may receive much needed support and direction in accessing resources. In addition, a model is being formulated to offer a friendship/social skills group to elementary-aged children who have been diagnosed with FASD. NOFAS Washington is also working on other innovative programs identified through needs assessments with families and community providers.

In addition to NOFAS Washington, NOFAS's other new affiliates are FASCETS (Fetal Alcohol Syndrome Consultation, Education, and Training Services, Inc.) in the state of Oregon, NOFAS Alaska, and NOFAS Connecticut. They add to the NOFAS network of existing affiliates that includes CALFAS (California Fetal Alcohol Spectrum Organization); MOFAS (Minnesota Organization on Fetal Alcohol Syndrome); and NOFAS South Dakota.

Through these relationships, NOFAS and its affiliates will undertake collaborations to build community coalitions, conduct public outreach, develop tailored fact sheets, coordinate advocacy efforts, and create media awareness campaigns. NOFAS's future collaborations with its affiliates will be on various levels, such as organizing public health fairs, holding statewide conferences, organizing advocacy efforts in state capitals, establishing statewide task forces, and organizing educational and training programs.

Julie Gelo and her husband Lynn live in the Seattle, Washington, area with seven of their thirteen children. Eight of their children have been diagnosed with FASD. Julie has been the Family Advocate for the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network clinic for over nine years. She offers trainings on Fetal Alcohol Spectrum Disorder, Self-Care, and Effective Advocacy to a variety of audiences throughout the United States and Canada from the unique standpoint of professional diagnostic team member and parent. She is the Executive Director for NOFAS Washington, the Washington State Affiliate to the National Organization on Fetal Alcohol Syndrome and co-director of the FASD Family Summer Camp held in Washington state.

Christie Connors is a registered nurse. She lives on Camano Island, Washington and is the Clinic Coordinator for the Fetal Alcohol Diagnostic and Prevention Network Clinic located in Everett, Washington. She is a founding board member of NOFAS Washington and co-director of the FASD Family Summer Camp held in Washington State.

For information about accessing the FASt Friens listserve, please email FASDSupport@aol.com or leave a message at (206) 940-2832.

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Reunion Island’s Pioneer Health Network for the prevention of FASD

By Dr. Denis Lamblin and Dr. Thierry Maillard

Réunion Island is an overseas French county situated in the Indian Ocean, between Mauritius Island and Madagascar Island, where live 700,000 residents of several communities: European Caucasian, Chinese, Indian Muslim, Indian Hindu, Black African and Creole people. Epidemiological investigations since 1996 have confirmed the high frequency of pregnancies with alcoholism (more than 5 percent), with a significant number (at least 1 per thousand births) of children with Fetal Alcohol Syndrome (FAS) and an even greater number (at least 6 per thousand birth) of children at risk for Fetal Alcohol Effects (FAE). Accordingly, the prevention of Fetal Alcohol Spectrum Disorders (FASD) on Reunion Island has become an official health priority, with media advertising campaigns directed at the general population and medical workers.

Our Failure

Despite our attempts to prevent FASD, however, our rates of children exposed to alcohol prenatally were still high. In spite of our improvements in detecting FASD, we failed to avoid repetition of fetal alcohol exposure in infants born to families with existing FASD diagnoses. FASD remained the primary cause of mental and behavioral deficiencies in southern Reunion Island. CAMSP (Centre d'Action Medico Social Précoce, a center for children under six years of age with disabilities), in southern Reunion Island, had detected cases of FASD in more than 10 percent of children with disabilities. The feeling of failure in front of an avoidable disability was difficult to bear.

We changed our approach. For three years we had organized weekly meetings with mothers who showed a pattern of illnesses related to alcoholism. They told us their daily histories. Much of their pain involved experiences of violence, break ups and loneliness that possibly related to the circumstances of their own childhoods. Faced with a profound lack of understanding, these women used easily accessible alcohol as both a crutch and a sedative. Unfortunately, the social taboo of alcohol addiction in our community had only increased the guilt and loneliness they felt. While pregnant, they hid their addictions as long as possible, resulting in inadequate medical attention and the increasing risk of disabilities for their babies.

Often in these cases, newborns were placed in the care of others at birth, but nothing was done to help the alcoholic mothers. In this context, a mother’s attachment to her child is imperceptible. What happens to the woman again facing such a loss and failure in her life? Alcohol perhaps seems to be her one and only friend, and faced with the prospect of an "empty nest," she becomes pregnant again. A new child is conceived with a high risk of being handicapped.

The CAMSP team, conscious of its limits, spent two years organizing meetings with others in the community – health care, psychiatric and social workers, as well as teachers, judges and police – who came in contact with these women so that these individuals would be able to collaborate with the effected women and children. These efforts to provide support uncovered much dysfunctionalty in our system, and showed us that existing practices were too autonomous and that institutions were too compartmentalized. We saw that there was a lack of coordination between aid groups, as well as ignorance of FAS and of alcoholism among childbearing women. From these efforts arose a collective realization of the need to pool resources to correct this health problem in our community.

The First Steps of a Functional Health Network

Now, an important priority for us is being proactive in helping families rather than asking mothers—who may already feel excluded—to approach professionals. In 2001, we created a network of multi-disciplinary and multi-institutional professionals for specific situations and attempted to connect it through the involvement of a network core representative. The main purpose of this core worker is to create links between the different actors of the network around a specific situation with the alcoholic mother. This network is managed by the REUNISAF (Reunion Island Prévention du Syndrome d'Alcoolisation Foetale) association. In the network core, a doctor and two social workers work together, assisted by a mother who has been abstinent for at least seven years. The abstinent mother, employed by REUNISAF, is often the only person able to put the affected woman at ease and give her the guidance to help herself.

The network core workers examine each social situation (family or otherwise) with the help of someone who is trustworthy and can inform the support workers of problems as they arise. Any events in the social situation that would cause the woman to return to alcoholism must be detected and remedied. Each situation has a vigilance level assigned according to three parameters: pregnancy risk, history of alcoholism, and children in the family with FAS and FAE. The network core responds to the social situation in varying degrees, according to the level assigned.

In addition to the work of the network core, REUNISAF also aims to undertake an awareness campaign for the prevention of maternal alcoholism. Four committees, comprising of twenty members each, are working on the following themes:

• Developing synergy in the network.
• Professional training and research requirements.
• Changing attitudes and perceptions about alcoholic women – a subject largely regarded as taboo on the island.
• Analysis of primary prevention methods.

We have also started other projects, such as holding meetings in nearby villages, creating an afflicted women’s storybook, and producing a DVD on FASD for secondary school students.

Results

After three years, we are glad to report very encouraging results from a professional point of view, owing to the involvement of approximately 300 workers. We are treating about 120 women who are declared cases with maternal alcoholism —half of them are now recovering alcoholics—and 200 children with FAS or FAE. In many affected families, we are seeing the effects of this prevention, as newborns are symptom-free.

These encouraging results are the fruits of general governmental policies on health and social problems. For the past ten years Reunion Island has been able to pool its resources—be it political, social, health, justice or educational—to combat this problem, and, more importantly, to listen to what these high-risk women have to say.

REUNISAF has also helped Mme. Anne Marie Payet, Senator for Reunion Island, become aware of this problem, and with her help and the aid of the Minister of Health, four public health bills involving FAS prevention have been passed. In addition, REUNISAF was awarded “la Bien Traitance” in 2004, by the French Ministry of Health. A network similar to REUNISAF has recently been set up to serve the north of France, so our model will benefit many more children and families.

Dr. Denis Lambin is a pediatrician, the medical manager of the CAMSP, and a coordinator of REUNISAF. Dr. Thierry Maillard is a general practitioner in a medical clinic in Saint-Louis of Reunion Island, and also the president of REUNISAF. For more information about REUNISAF, please visit www.reunisaf.com.

This article was translated from its original French; many thanks to Victor Leboiron of Vancouver, Canada for his translation assistance.