Here we come again—The third annual
FASD Family Summer Camp
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
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
The goals of the FASD Family Summer Camp include the following:
- To provide access to services and support systems focused on
the prevention of the secondary disabilities of FASD.
- 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.
- To provide parents and caregivers with an opportunity for respite,
education and networking.
- To provide children with FASD the opportunity to interact with
other children in developmentally supportive, well-supervised
recreational and social activities.
- 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
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
- 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.
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NOFAS Washington: A work in progress
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.
Friends meets on the third Tuesday
of every month from 6:30pm to 9:00pm at Little Red School
House/Children’s Village in Everett Washington. For
more information about the meetings, please contact FASDSupport@aol.com
or call 206-940-2832.
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
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
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
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.
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
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.
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
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
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
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
(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.
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
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
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.