November 2005

• Lessons of camp resonate beyond summer
• FASLink: Celebrating 10 Years Online
• Bringing a research network to life

“For some parents this is the most important part of camp; that others see and appreciate the spirit of their children.”

Lessons of camp resonate beyond summer

by Kee Warner

Whitecrow Village began its ninth summer in May 2005 with a four-day training for new volunteers and interested community members. We completed our summer schedule in September after a session for adults living with FASD. In the months between we held two more volunteer/community training sessions and a total of six camp sessions. We held the camps in British Columbia, at sites near Port Hardy, Windermere and near Lake Cowichan on Vancouver Island, and in Whitehorse in the Yukon Territory.

As our sites have expanded, so has participation: 38 families registered (with near equal numbers of birthparents and adoptive and foster parents) 92 kids came to camp, and 41 volunteers attended training. Volunteers included teachers, an infant development nurse, a developmental pediatrician, captain of the Canadian Rugby team, high school students, adults living with FASD, pre-med students, neuropsychology students, community and family support workers, drug and alcohol counselors, mental health counselors and community health representatives. Our camp has indeed expanded from its small beginnings.

Branching out to other communities

Whitecrow Village was initially established as a camp at Francois Lake, British Columbia, to give children with FASD a successful summer camp experience. Enjoying the children’s success and realizing that our program had the potential to address the greater needs of families and, indeed, whole communities, we began in our third year to include families and professionals. At the same time we began to offer our staff training to all interested members of the community, both professional and lay people. In 2002 we first took our entire camp program away from home at Francois Lake to Lake Cowichan on Vancouver Island. Now our program is available to communities around the world.

We travel to different communities for several reasons. We want to be accessible physically and financially to more families and more professionals. We want communities to be able to take our basics and tailor future programs to their own unique needs and culture. We believe that academic and experiential, hands-on training are necessary for meaningful understanding of FASD.

Whitecrow Village is now a concept rather than a single physical location. We seek to create a context of respect and relationship for all participants. Building on the work of many others, notably Jan Lutke in British Columbia, and with the help of many teachers, primarily Diane Malbin of FASCETS (Fetal Alcohol Syndrome Consultation, Education and Training Services), and with the always willing guidance of our participants living with FASD, we have developed a program that takes into account the challenges and strengths of people with FASD. By providing environmental support for the primary brain injury, we allow children and adults living with FASD and their families an opportunity to belong, to be appreciated and to contribute. We guide families and professionals to establish a common language and understanding that allows them to be successful in their common goals.

Our groups range from 25 to 70 participants. Typically, half the participants are children, and parents make up one-third of the adults. Staff members for single sessions come as volunteers from the community. Our current core Whitecrow Village staff includes Beverly Zorn, Bruce Price, Kee Warner and several adults with FASD. This year we missed Kellie Zorn and Kirk Lutke who were at work and school over the summer. These two young adults were our first core staff members with FASD, having progressed from campers and presenters to camp leaders. Now most members of our team are adults with FASD and we are beginning a junior leadership team.

We have worked in some of the most fractured communities. FASD can be the issue that begins the healing. People come together to address what seems to be a difficult but finite problem and find threads leading into every aspect of society. Old hostilities and misunderstandings, extreme poverty and decades of abuse and neglect are deeply woven into daily life. Of course, major changes may not occur in the two weeks that the community spends with us, but the process can begin. When a community determines that they are ready, together we can make a huge difference.

Providing fun and structure each day

The basic structure to our days at camp is one of the most important components of our participants’ successes. Our daily schedule has few variations throughout the session. The coffee and fruit bowl are out by 5 or 6 AM for early risers. Families gradually wake, prepare for the day and come to the dining hall. We have breakfast together. Then the teams of kids gather and start off to their first morning adventures, such as hiking, sports, or canoeing. The adults grab one more coffee and head into the morning training session.

The teams come back to the dining hall for snack between their two morning activities, unless they have gone on a longer trek. We do have lunch all together. This year we had to tell the parents in most groups that lunch was 15 minutes earlier than it really was, in order to get them there on time. Otherwise the kids were waiting for lunch while the adults finished just one more deep conversation.

After lunch we have a family rest time. This time of togetherness and rest is a difficult time for some families. The caregivers are so involved in the daily work with their families that they are out of practice playing with their kids. We supply books and games and by the end of the week, most families are enjoying this calm time together.

Craft time is an afternoon activity that the kids’ teams do together and parents are invited to join. It’s a rewarding time as we watch grandmothers and teenage grandsons beading together and preschoolers excitedly telling their stories as they paint and glue the things they have collected on their morning hike. It’s an opportunity to demonstrate that success has many forms.

One of the favorite projects is “google eyes,” which was taught to us by an early childhood educator. The kids use cotton puffs, feathers, construction paper, pipe cleaners and glue on stuffed animal eyes to make fantastic little creatures. In one of our sessions there was a man in his forties living with FASD whose life experiences led him to refuse to participate in most activities. He reluctantly went canoeing and hiking. He sat by as others participated. He watched one afternoon as kids made google eyes, and that evening asked Bev to show him how. He had not seemed to relate much to others at camp, but he spent craft time over the next days making a google eye character for each camp leader and some of the kids. As he gave each person their character, he carefully explained that it must be hung just so to watch over them and keep them safe.

After crafts and afternoon snack the next activity is swimming. Families go together to the waterfront to help the lifeguard keep the kids safe. Staff members station themselves in the water, each with an eye on two or three specific kids. Sometimes at the beginning of a session, one child will need the complete attention of a staff person. It’s rewarding to watch that child relax and safely join in after a day or two.

The time at the waterfront provides another opportunity for morning session discussions among the adults to continue. Parents talk over the pros and cons of Ritalin and Dexedrine, and we often hear, “what is Risperdol anyway?” They talk about school experiences and get help from parents whose older children have been to the same school. They continue sharing the family stories that no family without FASD could ever understand. They begin to laugh at the situations that were weighing so heavily as they hear similar stories. All the while they are watching as other adults interact with and enjoy their children. For some parents this is the most important part of camp; that others see and appreciate the spirit of their children.

Another important piece of the Whitecrow experience continues at the waterfront. Our staff of adults living with FASD leads the teams of volunteers working with the children’s groups. At the waterfront, parents and other adults see the communication style of these camp leaders and the ease with which the children understand what is expected of them. Many of the parents are not aware which of our staff have FASD. Later in the week when these leaders come to provide part of the morning training, the parents at first find it hard to believe that these highly skilled and effective leaders have any disability. And then the parents begin to see the possibilities for their own children.

Whitecrow provides opportunities for adults living with FASD to make meaningful contributions to their communities. It also provides the community an opportunity to learn how to support adults with FASD. Watching our camp leaders foster confidence and competence in their team is inspiring to all of us.

An example of change and growth in our young adult leaders was evident this summer. “How’m I doing, Kee?” was Ken’s most frequent question. Last year Ken had some behavior issues, but this year was different: Ken was determined to be a very good camp leader and succeeded beyond even his expectations. One day he asked, “On a scale of one to ten, how am I doing this year compared to last year?” “Twenty-five, Ken,” was the immediate answer. This became very useful shorthand for Ken and the team as a way to check in with each other. If someone started to repeat an off-color comment, one of the team would say, “That’ll take you down to a 12.” This gave us a way to support each other and prevent impulsive mistakes without any negativity.

“Circle time, Mom, come on, Dad,” is the call for the formal close of the day. Gradually everyone gathers and we begin to take turns talking and listening to each other. This circle time, while sitting on the earth in the evening, being quiet or sharing thoughts and feelings, brings a spiritual component to the day. As people begin to feel safe, they speak from the heart. “It’s okay to be me here,” is a common theme. The smaller children sometimes roll about inside the safety of the group. But usually there is one—often one of the more challenging younger campers—who shines at circle time.

This year one of our shining examples was eight-year-old Annette. She often didn’t seem to hear what was going on during the day. She had very few conversations with the kids in her group, and often argued with the leaders. But at circle time, Annette repeated the whole day to the entire group. She thanked one leader for telling a story on a long walk. She talked about swimming and hiking and collecting feathers. Annette talked about God, and how she loved everybody at camp. She talked about wishing her mom would be happy more often. She talked about watching her grandmother laugh with people, and how she likes that because she really loves Grandma. She talked about how important it is that we all care about each other and have a lot of fun. She talked about eating salad and macaroni and cheese. Some evenings she rocked her small body back and forth or walked quickly around and around the circle the whole time she was talking. Other times she sat calmly and dignified and made careful eye contact with each person.

Her grandmother was uncomfortable at first. It seemed to be inappropriate that a child would talk so much at circle time. Other groups of adults had not appreciated this granddaughter of hers. But as she saw that people are listening and agreeing, she began to relax. Others around the circle, children and adults, commented on what Annette had said; that it was nice to be reminded to be grateful to the Creator, that it does feel good to care about people, and that they liked dinner also.

Helping families bloom

There are many other stories of growth and change at each camp. One family tells how they signed up thinking they would learn how to better to support their adopted son. After three days at camp, they began to speak about how FASD affects much of their immediate and extended family. They are now formulating plans for their whole community to gain marketable FASD expertise. Whether this big project is completed or not, they will certainly bring a greater understanding to their family and community.

One mom had her three boys with her only for the time of camp. Usually they were in foster care because they were considered to be a danger to each other and to their mom. Mom said she likely, very likely, has FASD herself. She was on a prescribed drug regime that left her listless. Her support worker was at camp as well. They began to understand and respect each other as human beings doing their best with what they have. The boys saw and heard ways of communicating with each other and with their mom that are effective without being violent. They ate regular meals and didn’t have to feel the highs and lows of being overly full and too hungry. They saw other people enjoying their family, valuing their gifts and skills. One evening at circle, one boy leaned over and kissed his brother on the head. They’d had some arguments that day, but nobody was the scapegoat anymore. One brother said, “I’ve never been anyplace where the other kids didn’t make fun of me.”

The first time this mom saw the oldest son playing someone’s guitar, she was very worried. “He’ll break it when he gets mad,” she said. He played it all week without a scratch, without being angry from a sense of failure. After a day, his mom relaxed and just beamed at him. Two months later, she was beaming again as she told me the boys are at home with her. The support worker helped her get suitable housing. She was no longer feeling so stressed, and was starting to get off some of the drugs she had been prescribed.

Our youngest camper this year was just a few weeks old. He came with mom, siblings and cousins. He doesn’t have FASD—a real story of success in this community. His family has come to camp twice in previous years.

For some, camp is the first time they have been treated with care and respect. “Everybody understands me here, I don’t get in trouble,” said Michael who was fifteen, and at camp with his family for the first time. He frequently reminded camp leaders that he was always to be supervised. Since he would hug or punch those around him when he got excited, we asked Daniel, a very tolerant kid of ten who has been at camp several years, to stay between Michael and the smaller kids in activities. For Daniel this request was no problem. He said to Michael, “hands to yourself,” or “give me a high five,” in such a matter of fact way that it was easy to follow his suggestions. Both Daniel and Michael want to be junior camp leaders. “I want to come to every camp,” said Michael.

Ending the day

Each day ends with younger campers off to bed while staff and older campers play sports or cards. Sometimes parents get together in the evenings and play board games and then we have to chase them off to bed too. It’s just one week and nobody wants to miss any of the strength and hope this week will bring to the rest of his or her year.

Kee Warner is the parent of five sons who are affected by FASD, and in the past was a foster parent working long term with three families and their communities. She has been consciously working with people affected by FASD for about 15 years. As well as association with several FASD-related groups, she is chair of the Federation for Invisible Disabilities (FIDS), a provincial organization working to increase awareness and understanding of issues for individuals and families affected by all invisible disabilities.

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FASLink: Celebrating 10 Years Online

by Peggy Seo Oba

In the spring of 1995, a Manitoba mother contacted the Canadian Centre for Substance Abuse and asked information specialist Carole Julien if she could help her start a listserv on the Internet. "This listserv, " she explained, "would be modeled after another Internet group called "OurKids" in which families of children with disabilities could support each other. Only this would be called the FASLink."

And with this, Mrs. Val Surbey of Winnipeg started the largest listserv on the Internet for families and professionals dealing with Fetal Alcohol Spectrum Disorders. From an initial group of about ten people, FASLink has grown to a listserv that serves 300-500 people and professionals. It provides support but over the years has also provided a host of other services; more importantly, it also allows sharing of valuable personal experiences.

The initial group lived in different parts of North America and represented a wide variety of circumstances. Sally Caldwell had just become famous as Anton's mother in Fantastic Anton Succeeds by Judith Kleinfeld; Daniel Dubovsky, a single father of a son with FAS, was an instructor in psychiatry at Allegheny University, training people working in mental health and substance abuse treatment, and he had a great interest in and knowledge of pharmaceuticals; Louise Morin, a mother from Quebec, was anxious to provide information to the French-speaking peoples of Canada; Bruce Ritchie (present moderator of FASLink), was a parent and a computer systems expert; Dr. Robert Schacht was working with the American Indian Rehabilitation Center at the University of Northern Arizona; Joan and Bill Smith were adoptive parents who later started the OlderFAS listserv; and Donna Wheway was from the British Columbia FAS Support Network. Other founding members included "Y," a birth mother; "P," an adoptive mother of two boys; and Val and her friend Bev, also an adoptive mother. There might have been others "lurking," but these people formed the initial core of FASLink and had a vast array of knowledge to share.

Over the years, people have joined and dropped FASLink, depending on how busy or difficult their lives have become. We may have started out as a support group but we have grown to include research information, research services, personal experience with problems, conference notices, calls for papers, calls for research participants, legislative issues, education and judicial issues, as well as other everyday problems that beset busy families.

FASLink has also spread internationally. From the original Canadians, we have come to include members from the U.S., the United Kingdom, the Netherlands, Germany, Poland, South Africa, Australia, New Zealand and Tasmania.

Age-wise, we also span quite a few years of child rearing. Some are birth parents. Many members are young parents who have just adopted a child. Some are older parents. Some are foster parents and some are raising nieces and nephews. Some are grandparents and some have just taken in a neighbor's child and now have custody. Some are just relatives who care. Some have one child and some have quite a few. We have professionals in nearly every field associated with children's health care and education. We have parents who have barely finished high school and parents with PhDs. We have numerous careers in art, design, writing, counseling, education, medicine, business, administration, computer science, music, therapy and many more. And we are even lucky enough to have some very articulate adults with FASD who generously share their lives with us. The one thing we have in common is that FASD is the great leveler: in this we are all the same.

For the most part we talk about the problems we are having with our children and "The System." "The System" can range from getting a diagnosis, to getting help with the schools, to finding the right drug therapy, to keeping a job, to life "after" the parents. Continuity of care is one thing sorely lacking in FASD treatment. It is our greatest problem.

In 1999, the Canadian Centre for Substance Abuse decided to relinquish its patronage of the FASLink. When no agency stepped forward to keep it going, Bruce Ritchie decided to take the responsibility of its continuance upon himself until proper funding could be found. It is Bruce who presently provides the hardware, software and Internet connections that are the basis of the FASLink listserv.

Under Bruce's guidance, FASLink is minimally moderated. We do get into hot topics at times, but as with all large families, we consider this part of our overall relationship. If things get too uncomfortable, it is recommended that the reader simply use the delete button until things return to normal. And things do return to "normal".

The FASLink can get silly at times. One mother's problems with her daily schedule led to two days of exchanging crock-pot recipes. Typos, language errors and stories about the kids lead to good-natured teasing and lots of "ROFL” (rolling on the floor laughing) in the postings. Sometimes it is the much-needed laughter that makes things tilt to normal again.

In ten years, we have also had pet problems, in-law problems, spouse and special relationship problems, housekeeping problems and consumer issues. We have celebrated births, marriages, IEPs that have been accepted, new jobs, new relationships, milestone birthdays and therapies that have worked. We have commiserated with each other over sprained ankles, worn-out cars, the flu, messy offices and kitchen tables, dealing with our teenagers, and even death. If it concerns living with FASD, then we have probably talked about it and tried to deal with it. We have given and taken advice, all the while knowing that it is hard to walk a mile in another person's shoes.

It has been a useful ten years for the families and the children they love. We hope to grow and learn, and perhaps through our combined efforts, change the face of FASD with more knowledge, understanding and compassion than that which existed before the FASLink.

Peggy Seo Oba is an aunt to three children with FASD.

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“Let me tell you the secret that has led me to my goal.
My strength lies solely in my tenacity”
- Louis Pasteur

Bringing a research network to life 

by Jan Lutke and Sterling Clarren

It was noon on October 22 and our flight was touching down in Yellowknife, Northwest Territories in Canada. The pilot reported that the temperature was 25 degrees Fahrenheit and the wind was gusting to 45 mph. Snow was on the ground though the lakes were still open and most trees still had their leaves. The eagles and the ravens were circling the rocky outcroppings looking for lunch. The locals said the conditions “weren’t bad.” But we had not come here for a wilderness experience. Thirty western and northern Canadians were meeting to talk about networking their experiences and data so that their adolescent and young adult patients could benefit. This was to be the real beginning of CanFAS NW.

Over the past few years, the profile of FASD has risen dramatically in Canada. It has become a significant topic of general concern and an active area for governmental policy discussions in health care, social services, justice, and education. While much has been accomplished, much remains to be done in determining, developing and scientifically evaluating:

• appropriate screening mechanisms;
• diagnostic and assessment questions;
• the extent of the problem;
• targeted prevention programs;
• best practices for intervention and treatment with high risk women;
• best practices for intervention and treatment for individuals with FASD themselves and support for their families.

The number of children and adults receiving a diagnosis within FASD is on the increase. Approximately 1,150 evaluations will be done this year in the region. In addition, the government of British Columbia is developing plans to increase the capacity for FASD assessment in B.C. alone to possibly double that number. Both published and informal research indicates that a person with FASD will cost an average of about $2.9 million CDN ($2 million USD 1) over the course of his or her lifetime. Research that has been done on costs is almost exclusively American and based on a system that is different than the Canadian one, and does not include costs associated with the criminal legal system, which can be expected to increase this dollar amount in Canada.

There is little, if any, evidence-based research on the efficacy of services provided by this money, or how this money might be better spent to make a positive difference and improve the quality of life of those with FASD and that of their families. Since FASD almost always has profound implications for the functioning of affected individuals, particularly as they become adults, there is, arguably, no greater priority for research in Canada today.

WHAT TO DO

To begin to address these issues, the Canada Northwest FASD Partnership was formed in 1998. It is currently an alliance of the four western provincial and three northern territorial governments working together towards the development and promotion of an interprovincial/territorial approach to prevention, intervention, care and support of individuals affected by FASD. Participating jurisdictions include Alberta, British Columbia, Saskatchewan, Manitoba, Yukon Territory, Northwest Territories and Nunavut. This is an enormous area, larger in square miles than the United States, but with a population of only 9 million people, residing in both sizable cities and scattered throughout vast rural and remote regions.

In 2004, the partnership moved to create the Canada Northwest FASD Research Network to begin the requisite tasks of interdisciplinary research. The network is governed by a board of directors drawn from the seven jurisdictions. Current board members include Lou Winther as the first chairperson, Dr. Sterling Clarren as chief executive officer/scientific director, Dr. Margaret Clarke as associate director, and Jan Lutke as the program manager. The host agency is the Centre for Community Child Health Research (CCCHR) within the B.C. Research Institute for Children’s and Women’s Health. CanFAS NW is accountable to the partnership with formal, clearly defined, transparent governance, reporting and leadership responsibilities. Its challenge is to build a common research agenda in northwestern Canada.

CANFAS, NW is intended to be comprised of both the research community and the broader FASD community and to span traditional disciplinary boundaries. It also must face the unique challenges of research in this complex arena. It will be essential that all stakeholders—families, aboriginal peoples, advocates for women’s health, those who work with affected adults, rural and remote communities and consultants in other areas who may have critical knowledge—be authentically engaged in the network and play an active role in its creation and growth. Given the many individuals, agencies and organizations involved, and the diversity of perspectives, this will be no small task.

This network will undertake the collaboration of a series of individuals and organizations linked together at different points (hubs) so that they become an interconnected entity working towards a specific goal This network will undertake the collaboration of a series of individuals and organizations linked together at different points (hubs) so that they become an interconnected entity working towards a specific goal—FASD research in identified areas. In the last ten years in Canada, there has been a shift in the conduct of basic and clinical research to a greater emphasis on interdisciplinary sharing and networking approaches. The rapid spread of telemedicine, videoconferencing and high-speed Internet access across Canada has made this emerging trend a practical reality.

Regardless of where they are from or how they communicate, this network will essentially be a collection of people from different places who share a common focus and wish to work together to assist change. While community-based researchers have been somewhat slower to turn to this model, the information and resources now available to them have grown substantially and are also beginning to change the way in which they undertake research activity.

BUILDING A RESEARCH NETWORK AND RESEARCH ABILITIES

Success may well depend on bringing all parties together—and keeping them together—in support of a common commitment towards shared goals.

We will need to:

• assure the meaningful involvement of family and community stakeholders in the process at all points;
  
• maintain the profile of FASD within governments as a priority area and integrate it into policy and service planning;
  
• increase research capacity to identify and respond to emerging issues in a coordinated manner;
  
• increase access to research opportunities for students;
  
• increase the number of clinicians and researchers actively involved in research;
  
• increase research interest and initiatives through hospitals, universities, government bodies, private funders, local, provincial and national organizations and communities;
  
• develop targeted funding sources;
  
• facilitate active, accurate and effective communication between the community and researchers;
  
• increase communication among clinical researchers and those involved in practice;
  
• plan, develop, coordinate and implement a multi-focal, forward thinking and long-term Canadian Northwest FASD research agenda within a collaborative network in which all partners can take an active role;
  
• provide for transfer of knowledge into clinical best practices across systems.

We have identified approximately 150 active FASD projects underway in Canada NW, with work in every important aspect of inquiry—prevention, diagnostics, mechanisms, intervention and treatment. Unfortunately, most of these projects are small and under funded. By themselves, they often lack the statistical power to prove their observations, and they are often isolated from investigators in adjacent fields who could build upon and advance their work. Critical questions remain unanswered. In particular, there is virtually no evidence-based research on what constitutes effective treatments and interventions for individuals with FASD of all ages. This is of a particular urgency in school and in adulthood. Governments require research-based evidence to assist in the consideration, development and implementation of policies that can effect meaningful change.

In the last two months we have held forums in Winnipeg, Calgary, and in Yellowknife to bring together investigators and clinicians and interventionists to discuss the benefits and barriers to networking data within our first potential hubs of diagnostics, primary prevention, and interventions during the difficult period of transition to adulthood. In these intense small meetings, we have discussed how CanFAS NW could:

• link those groups doing research with one another, communities, information providers, and with the consumers of their findings;
  
• provide a critical sized population for studies that would otherwise not be able to produce generalized results due to lack of sufficient numbers;
  
• provide for linkages across similar kinds of complimentary research activity, evening out the lack of coordination and/or research expertise in different jurisdictions;
  
• facilitate multi-site clinical studies applying common standards and research questions;
  
• encourage non-traditional approaches and pooling of resources to broaden the scope of research;
  
• create standardized data for analysis;
  
• encourage the development of good standards for evidence in service provision;
  
• allow practice standards and clinical protocols to be applied evenly and widely;
  
• provide a meaningful set of answers to policy questions;
  
• provide for the rapid dissemination of evidence based practices;

make comprehensive longitudinal studies possible.

OFF WE GO

Western Canada has a strong group of qualified, committed and experienced researchers in the field of FASD. It has experienced and trained physicians who provide diagnosis in 16 settings. It has committed programs and dedicated front-line staff working with women, individuals with FASD and their families. It has parent-led family support organizations. And it has strong government support. We have a solid foundation from which we can build coordinated and focused research capacity and activity.

The weather never changed in Yellowknife while we were there, but the meeting room was warm, filled with the energy of great people and great ideas. We flew home confident that CanFAS NW would soar with those northern birds. The forums had made it clear that Western Canada was ready for action.

Jan Lutke is the Clinical Research Manager of CanFAS. She has been the former Chair of the National Advisory Committee on FASD to Health Canada, was the founder of the FASD Support Network of BC and of Connections: Serving Adolescents and Adults with FASD. She is also the parent of 12 children with FASD who are her reason for everything she does.

Sterling K. Clarren has recently moved from Seattle, Washington, to Vancouver BC where he is a Clinical Professor of Pediatrics. He has been an active clinician and researcher in the field of FAS since 1978.

1. Cost of Fetal Alcohol Spectrum Disorders; C. Lupton, L. Burd, R. Harwood; American Journal of Medical Genetics Part C (Semin. Med Genet.) 127C; 2004