Tuesday, December 06, 2005
FASlink is 10 years old!
People living with FASD in their lives or in their families NEED support and one of the best places I have found for that support is FASlink. This article was in the recent issue of Iceberg , a newsletter about FASD. Happy Birthday, FASlink!
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.
Interesting FASLink Facts (Courtesy of Bruce Ritchie):
The FASLink Web site maintains an extensive archive of information serving more than 400,000 people annually.
The FASLink site has more than 100,000 FASD-related documents. It provides access to research, literature, PowerPoint presentations, diagnostic tools, and educational and legal resources.
FASLink produces educational CD's with information that can be shared with family members, teachers and other professionals involved with FASD issues.
FASLink places at the top among Internet search engines for the term "fetal alcohol," even though http://www.faslink.org/ and www.acbr.com/fas/ are the same FASLink address, splitting the ranking.
FASLink provides information and support 24/7 and serves parents (birth, foster and adoptive), caregivers, adults with FASD, doctors, teachers, social workers, lawyers, students, psychologists, law enforcement officials, judiciary members, corrections professionals and government policy makers.
FASLink shares 50 to 100 letters daily among the 300 to 500 members.
FASLink membership is highest when schools are in session.
FASLink depends on private financial support for its existence. It does not receive donations or funding from the alcohol industry.
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.
To access FASLink
FASLink Web site: http://www.faslink.org/Moderator's Email: info@faslink.org
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.
Interesting FASLink Facts (Courtesy of Bruce Ritchie):
The FASLink Web site maintains an extensive archive of information serving more than 400,000 people annually.
The FASLink site has more than 100,000 FASD-related documents. It provides access to research, literature, PowerPoint presentations, diagnostic tools, and educational and legal resources.
FASLink produces educational CD's with information that can be shared with family members, teachers and other professionals involved with FASD issues.
FASLink places at the top among Internet search engines for the term "fetal alcohol," even though http://www.faslink.org/ and www.acbr.com/fas/ are the same FASLink address, splitting the ranking.
FASLink provides information and support 24/7 and serves parents (birth, foster and adoptive), caregivers, adults with FASD, doctors, teachers, social workers, lawyers, students, psychologists, law enforcement officials, judiciary members, corrections professionals and government policy makers.
FASLink shares 50 to 100 letters daily among the 300 to 500 members.
FASLink membership is highest when schools are in session.
FASLink depends on private financial support for its existence. It does not receive donations or funding from the alcohol industry.
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.
To access FASLink
FASLink Web site: http://www.faslink.org/Moderator's Email: info@faslink.org
