FASlink Fetal Alcohol Disorders Society

FASlink Archives

FASlink Discussion Forum

The FASlink Discussion Forum is an Internet mail list for individuals, families and professionals who deal with Fetal Alcohol Spectrum Disorders. FASlink provides support and information 24/7. FASlink has the largest archive of FASD information in the world. FASlink serves parents (birth, foster and adoptive), caregivers, adults with FASD, doctors, teachers, social workers, lawyers, students and government policy makers, etc. Bruce Ritchie is the Moderator.


Join FASlink

Subscribe to FASlink Discussion Forum


Leave FASlink
Manage your member account


Send mail to the FASlink members
Once you have subscribed, to send mail to the FASlink members, send it to:


Special email addresses:

E-Mail: - Sends email directly to the Moderator

Welcome to the FASlink Family.


PUBLIC FORUM: While FASlink is a subscriber listserv, members must be aware that this is still a public forum and what they write on any listserv could be seen by others outside this list. FASD is not the type of subject matter that would normally attract undesirable predators; however, reasonable caution on any listserv is always advisable.


FASLINK ARCHIVES: Letters are saved and regularly processed for the on-line searchable archives at www.faslink.org. If confidentiality is important to you, do not place your identifying info in the body of the message. For the same reasons, please be careful about using the last names of others in the body of the message.


Please do NOT forward private emails to others without the author's consent? Netiquette says "no no".

 

Search the FASlink Archives

The FASlink Archives contain more than 130,000 documents on FASD related issues.

Search words? Asterix * is wildcard.
Search Tips

We are here to work for the benefit of our children and others affected with Fetal Alcohol Spectrum Disorders. We are working to provide support, information and services for our children and adults with FASD as well as their families. And we strive towards prevention and education so that future children will be spared from these devastating disabilities. FASD is 100% preventable. We spend considerable effort to educate those professionals who work with FASD affected individuals and we tell the world that pregnant women should not drink alcohol. FASlink serves parents (birth, foster and adoptive and grandparents), caregivers, adults with FASD, doctors, teachers, social workers, lawyers, students, government policy makers, and any others whose lives are touched by Fetal Alcohol Spectrum Disorders.

We all come from varied backgrounds, and for varied reasons our paths have brought us to this place. We are here to help our children and to deal with the scourge of alcohol induced birth defects. We are among friends seeking the same answers. Together, with love, patience and respect, we can find answers for our children, help them grow to be the best they can become and help ourselves grow in the same way. It is our special children who teach us to become far better people than would otherwise have been possible. And that journey is far easier if we have faith, love and respect.

This list is Moderated by Bruce Ritchie. Posts are sent directly to the list without pre-screening by the Moderator. However, it is absolutely essential that the discussions be civil and that we all exercise respect for one another. The stresses of raising children with FASD can be extreme and as a result occasionally tempers may flare. Do NOT write to another member in anger. The words you flame with today, you may have to eat tomorrow, or sooner.

Some members have also been born into and raised in absolutely horrendous circumstances of abuse. Their vulnerability MUST also be respected. NOTE: Personal attacks on a member, on or off-list can result in suspension of posting privileges or a complete termination of membership.

We are neither parents nor children to other members. Nobody has the right to assume they are going to "train" another member. If you do not want to hear what another member has to say, set your e-mail filters to delete their posts.

Some of our members have FASD and we consider them to be an extremely valuable resource. They help us understand the world as our own FASD children see it. We also know that they are particularly vulnerable. They will be protected to the best of our ability. Treat them with special respect, the kind of respect you hope your children will receive when they are adults too. Because if we cannot learn to have respect for our FASD members, what chance do our FASD children have in the rest of society.

 

Letters from the FASlink Family


From: "Teresa Kellerman" <tjk@azstarnet.com>

It provides a network of support so wide that when I am faced with a seemingly unique problem in dealing with FASD that doesn't seem to have any answers, I invariably will find at least one other family on Faslink with a viable suggestion, and usually I receive many helpful responses.

It provides me with ideas on dealing with children, schools, and community professionals that I might not have thought of myself. There is a rich field of perspectives and experience that brings new ideas to creative problem solving.

It provides a network of support for families who live in rural areas, who believe they are all alone with their struggles. Since I have a web site that offers resources to families, I get many requests from people asking if I know of anyone in their locale. I usually don't, but I can certainly find out, just by posting on Faslink, with a connection made within hours, that can make all the difference to the isolated family, offering them hope and support.

It provides me with learning experience from the adults with FAS and FAE who post on Faslink, insights that help me in raising my child with understanding and compassion.

It is my Family, who understands and accepts my children's problems, my desperation, my frustration and anger, who offer a shoulder to cry on, suggestions to make life better for me and my family, and encouragement to carry on when the burden becomes too heavy.

It is only on Faslink that I find my peers. Because of Faslink, I know I am not alone, that my battles are not lost causes, that there is hope for my child's future.

Teresa in Tucson, AZ - mother to John (FAS)
Come on over to... http://come-over.to/FAS


From: Ron Jorgenson <ronpenn@island.net>

I am a Special Education Resource Teacher in Port Alberni on Vancouver Island. Faslink has been an invaluable service in expanding my understanding and grasp of the situation for children with FASD, families and the community. In the last 25 years as an educator, I have had lots of information shuttled my way. In that time I have met few resources that had as much practical information, insight into the impact on families and have helped to reframe my perspective on a subject as this site has.

This site and those who access it have influenced the manner in which I work to support children with FASD in our schools. More importantly it has helped me to see FASD as a community problem. Information and materials accessed from this site have enriched our school district and support to teachers, families and most importantly children.

This is a worthwhile and valuable service to the communities across North America who have fewer accesses than even we do here on the West Coast of Vancouver Island. Thanks go to those with vision to see the possibilities in such a site. Be part of a vision. The opportunity to continue this resource under the capable direction of Bruce Ritchie is a gift deserving of support.

Ron Jorgenson


From: HARGRLIN@aol.com

I joined FASlink about 18 months ago. The parental experience and knowledge is astronomical. There has been significant help in the areas of emotional levels of FASD kids, IEPs, schooling, discipline (and lack of awareness of it), major pschiatric problems, major deficiencies, muscle tone and strength and parenting. I consider this to be my main support group with

continuous availability of members. My son Andy is 8 years old with FAS and ADHD. He will probably never live independently - however he is one of the sweetest kids I have ever known. He loves music and can't do math, loves dancing and singing and can't write his name legibably. He loves people and has the strong chance of being taken advantage of. I need this group to help y son become the best that he can be.

Thank you,

Linda Hargreaves
Hargrlin@aol.com


From: "Judy Sutton" <jmsutton@sprint.ca>

Until I joined the Faslink family, I was struggling on my own, raising a FASD child. This is the second child I was raising with this totally preventable disability.

Faslink welcomed me, answered any and all questions I posted to the link, and for me, finally having someone who understood that when I said my daughter had tantrums, were there to support me and build me up when professionals didn't believe that her tantrums were explosive and a threat to her safety.

I thank Bruce from the bottom of my heart to take on the task of keeping FASlink alive for me and other parents raising these children. We need the support of people/parents living similar lives.

Thank-you

Judy Sutton
Ottawa, Ontario, Canada


From: Smlthings@aol.com

I am the adoptive mother of three FASD children in Arizona. For the last 14 years I've struggled to raise my kids the best I could. The only information I had been able to get was what caused FAS and some small amount of information about how it may effect brain function. Other than that, I was pretty much flying by the "seat of my pants." Three months ago, I was given a computer. The first thing I did was look up FAS on a search engine, and landed squarely in the lap of FASLink. Suddenly, I had a wealth of information and support from professionals, researchers, parents and educators through conversation, links and experience. I can't begin to tell you how this has changed the quality of our lives. I've heard from parents all over the world who have given me advise and support on how to deal with everyday issues, medical problems, educational opportunities, and behavior problems. I've been able to share my successes and failures. Behaviors that were bewildering are now recognizable. I've learned new approaches to everyday struggles. I've joined an international organization aimed at raising awareness and prevention of FASD. I've learned how to access support services in the community. Finally, after 14 years of struggle, I know that I AM NOT ALONE.

Please consider supporting this invaluable resource that so many families like my own depend on in their daily lives.

Thank you for your attention,

Suzanne M. Lucier
smlthings@aol.com


From: Fasuk@aol.com

We were up against a brick wall. We had been told that our adopted daughter had Foetal Alcohol Syndrome, but in the UK there was no information in the condition, nor support for sufferers, parents, carers and teachers. We turned to the internet. Whilst searching we came across faslink. It was as if the flood gates to information had opened. Before we knew it we were in conversation with professionals and fellow parents who provided us with a wealth of invaluable information and tips. We came to understand our daughter Sinéad's condition and behaviour better. This has helped us to deal with her and help her more effectively, as well as explain her behaviour in a more appropriate way to her brothers and sister so that they are able to relate to her in a far more constructive way. She was well on the way to destroying our family life, but now, thanks to faslink, she enhances the quality of our family. We have now set up a support charity here in the UK, to try to provide the support services which we found so lacking. We still rely tremendously on the support of our faslink family. The information faslink has given us is now used all over the UK to enhance the lives and education of those affected by alcohol abuse in pregnancy. We, and millions of others world-wide, need faslink to survive.

Bernard & Jeanie Farrell-Roberts


From: "Murrieta Creek" <mcrs@dconn.com>

I am the guardian of a 21 year old young man with Fetal Alcohol Effects (FAE). Rick has lived with me since the age of four and he received his first tentative diagnosis at the age of five. This diagnosis did not help me care for Rick because I had almost no information about what a diagnosis like that means. So I stumbled around making many mistakes and causing terrible stress on Rick and myself. Constant failure due to unrealistic expectations has meant that Rick suffers from many of the secondary disabilities that are very common in people with FASD who are not properly diagnosed, treated and supported. Secondary disabilities can include mental illness, expulsion, criminal behavior, incarceration, deviant sexual behavior and substance abuse. The cost to society in dollars is nothing compared to the price paid in sheer human misery. Obtaining information about FASD and emotional support when coping with FASD is crucial to success and Faslink is by far the best source of information and support I have ever experienced. Like FASD, Faslink is there 24 hours a day, 7 days a week! Please help us preserve this vital link. Thank you,

Eva CarnerTemecula, California
(909)694-5534
mcrs@dconn.com


From: "Pamela Thome"

Being the parent of a child with FAS/FAE is the most challenging and rewarding experience of my life. As a member of FASlink, I have the opportunity to educate myself through the ideas and experiences of other families who share the same challenges. Most people cannot understand the unique problems that children and families with FAS/FAE encounter. On FASlink I have found a forum of understanding, information, suggestions and support. Not only has this given me many options when dealing with my son's problems but it also has given me the ability and confidence to enlighten the educational and medical professionals who work with my son. FASlink is easy to access with a wide variety of knowledgeable professionals who are willing to help with any problem I might present to the group. This knowledge is priceless.

Pamela Thome

Pamela Joan Thome (Librizzi) - January 8, 1959 - January 12, 2006 - Adopted mother of Michael - of lung cancer. Pam was a long time member of FASlink and was a major contributor to the discussions with her humour, forthright commentary and passion for life. She had adopted her husband's nephew, Michael, who has FAS. Michael is now age 11 and doing well, primarily thanks to Pam's incredible skill and dedication as a mother. When she divorced, she gained sole custody of Michael and has passed it on to her adult daughter, Angelique. Angelique and her husband Marty will make excellent parents for Michael in Pam's absence. Pam was an incredibly independent woman and never let adversity slow her down, until now. She had a zest for life, a passion for helping others, and was an active member of the Society for Creative Anachronism, taking Michael to events across the USA. She loved to wear purple. It was her trademark, including dying her hair purple for Angelique's wedding.

She lived a varied and joyous life: beginning in a Polish neighborhood in Chicago, traveling across the Midwest on the dog show circuit and up and down the East Coast, stamping her passport to see the Crown Jewels in London, and making her home in a quiet neighborhood in Port Richey, FL, while enjoying a creative and beautiful life as Her Excellency Baroness Duva dea Pullea in a kingdom known as Trimaris. Her resume lists many jobs, but first and foremost was her dedication to her children, Michael (11) and Angelique (28) of Port Richey. Also survived by a brother, Larry (44) of Buffalo Grove, IL, and countless people who called her "friend." Died after a more than yearlong battle against cancer, but her humor, love, and joie de vivre stay with us.

From: PSOBA@aol.com

My husband is a Japanese national and I am a third generation Japanese American. We are the uncle and aunt of three children who have Fetal Alcohol Syndrome. Click here for our story. These children are the natural children of my husband's older brother and his wife and they are our daughter's only first cousins.

We first thought that our oldest niece might have Fetal Alcohol Syndrome in 1992 when I found an article in the National Geographic. I was devasted. In the beginning when we thought our niece might have a mild case of Cerebral Palsy and Infantile Spasms (a juvenile form of epilepsy), we could accept the fact that many things happen to babies and that this was an act of God. It is another thing to find out that FASD is entirely preventable and to finally realize that we had severe problems with drinking throughout both sides of our family.

In 1996, I attended a Family Empowerment Conference in Wisconsin and met a Canadian family who had raised a daughter with FASD. I told them of the state organization on FASD information that we and two other families were trying to start. And I told them of the isolation of our family from all the other families in our state. This separation was why we had decided to start an information group rather than a support group because we were so far apart. This family suggested I join the FASLink, which was a listserv for families dealing with FASD. It was a way to share information and get support and encouragement, they assured me.

I joined the Faslink the spring of 1996. My main objective was to share the seven years of research and reading I had done on FASD and other related topics. I have gotten to do this but I also received a great deal more in the way of support and encouragement, just as promised!

It is very difficult to watch three FASD children grow up without their parents having even the slightest inkling of why their behavior is so strange. It is heartbreaking to watch them being punished for things they cannot help and even more painful knowing they are not getting the special services that are so readily available in western countries. On the days I have been so depressed and saddened, the FASLink has proven to be a great and enduring source of comfort.

It is for this reason and the wonderful information that is being passed on through the FASLink, that I have included it in my information packets when I go to conferences. I have given the FASLink address to a doctor in Shanghai, the mental health department of the city of Hong Kong, two researchers in Norway, a government worker in the Republic of Ireland, the New Zealand FAS, and I will be taking the address to Finland in the middle of May (1999). I also pass on the informational and conference postings (no personal letters are re-posted without permission from the writer) to various FASD groups, researchers, educators and families who may be interested.

The FASLink is a temendously valuable resource for families, researchers, and educators and by its very nature as a listserve is fast becoming international in its scope.


From: "Therese Bollerup" <MTB@ned.uscourts.gov>

FASlink provides countless personal and professional benefits to me both as a lawyer working in the United States court system and as the parent of a thirteen-year old adopted child with FAE.

For our family, the information and support we derive from FASlink is priceless. Families with FASD-afflicted children are too often isolated and maligned because the children create so many social, educational, emotional, spiritual, financial, and health issues. FASlink is a refuge for FASD families. We've all "been there, done that" in our struggles, and we can encourage each other, educate each other, ventilate with each other, and cry with each other. In addition, because several of our members are adults with FASD, we have resident experts to help us understand how our children function and what difficulties they will face as they mature.

FASlink is also a professional resource for me. Almost on a daily basis, I share items that I have found on the link with the judge for whom I work, with medical professionals of my acquaintance, with my spouse (a juvenile law lawyer), and with professionals in other related disciplines. The link gives us current research, digests past findings, and suggests new areas to examine. In particular, my judge has used research from the link in criminal cases when attempting to fashion a just sentence for convicted individuals with alcohol-related neurological disorders.

FASlink will do very well in Bruce Ritchie's hands. He is the parent of a child with FAS, and he is also an ardent supporter of FASD causes not only in Canada but around the world. The dedication he has shown in maintaining the FASlink archives demonstrates the depth of his commitment to the prevention and treatment of FASD as well as his masterful technical abilities. His TRIUMF plans also establish that he is an architect of hope for all FASD- afflicted children and their families.

M. Therese Bollerup
Attorney, United States District Court
P.O. Box 277
Omaha, NE 68101-0277


From: "r.terry@ifad.org" <r.terry@ifad.org>

I am an American living in Rome, Italy. Four years ago we adopted two children from an orphanage in Russia. From the very beginning I could tell there was something "different" about my son. And even though we have spent much money and time getting him tested, each time mentioning that his birthmother was alcoholic, we could never get any diagnosis beyond ADHD and possible Oppositional Defiance Disorder. These so-called experts had lulled us into thinking that my son was "normal" and had high potential, that his developmental delays were just due to his institutionalization for the first three years of his life. But things were NOT getting better.

I finally decided to do my own research on the Internet, and as soon as I came across Fetal Alcohol Syndrome, I finally knew what we were dealing with. It has been hard to accept that my son has a permanent disability, but at the same time I feel more focused, more able to plan, advocate and deal with it. I have been able to offer more information to his teachers which has helped in formulating a more effective educational approach. He will still need a medical diagnosis, but he matches so much of the criteria, I believe it will be a proforma.

As you can imagine, there is not much support here, for a foreigner in a foreign country. If there are any doctors, professionals or existing support groups, I do not have the resources to ferret them out. I cannot begin to tell you how important it has been to have discovered Faslink.

They say knowledge is power; my whole family has been so empowered by the knowledge that has been shared by the members of the list. You can believe that it has made an enormous difference in our lives, and, we had hoped, would continue to do so.

You can therefore imagine our distress and disappointment at finding that the CCSA authorities are planning to discontinue the list. I am writing to ask that you reconsider. Apart from the emotional support that anyone can find there, the factual and procedural information to be gained is invaluable. The list sponsors and supports its every member, be they young, old, male, female, FAS/FAE, or non, natural or adoptive parents or relatives, rich, poor, layperson, professional, Canadian, American or other nationality. This is truly a unique and priceless service.

Faslink has made a vast difference in the lives of so many. Knowing that Faslink has been so instrumental in this should make CCSA proud and encourage it to continue in these efforts, rather than abandon such a necessary individual and community service.

Thank you for listening to a highly appreciative Faslink member who, by the way, only joined a mere 6 weeks ago. We had hoped to become not just a taker but a giver to the list -- please allow us the opportunity to do so.

Roseanne Terry
Ennio Elisei
(parents of Alex, a 7 1/2 year old kindergarten student)


From: "Tom & Paula Kramer" <tkramer1@mediaone.net>

FASlink has meant sanity in our world that is sometimes upside down. Without the link, I wouldn't have been able to help my sons (ages 5 & 6) thus far. I have gotten advice, phone calls when I was sick, support through my sons recent hospitalization in the psych-ward (tough putting a 6 year old in). I couldn't have made it through the past 2 years without it. Also info on meds, conferences & taking anti-depressants myself.

Thanks for it being here & thanks for you continuing it. We are never alone with the link!!!!!!

Paula Kramer


From: aluna@zoomnet.net (The Armstrongs)

We opened our home to foster children in August of 95. In March of 97, we became the foster parents of three year old twins, a boy and a girl, whose mother was hooked on drugs and alcohol. Of course we didn't learn the full scope of her addictions or it's effect on the children until later. As we helped them overcome many of their delays and learned more about the mom, we thought there was a problem that went beyond neglect. We began to research children who were exposed to drug and alcohol in the womb. Despite the many commonalities in development, growth, behavior, etc. we were unable to find a diagnosis or support for a year and a half.

Since that time, both children have been diagnosed with FAS and scheduled for genetic testing (through a Children's Hospital an hour and a half away). We found Faslink after the diagnosis, but it has been wonderful to meet others online who have been where we are. It has provided the emotional and educational support that we have not found locally. Through Faslink, we have been introduced to resource materials we would not have found on our own. We are now in the adoption process for the twins, and we are glad to know that we have access to people who can help us understand, cope, and work through and around the roadblocks that alcohol has put in front of our children.

Kenda and Alun Armstrong (Ohio)
aluna@zoomnet.net


From: Bev Eastcott <gbkeastcott@mb.imag.net>

I am a new member to the FASLINK family, as I only got my computer connected to the Internet in January 99. However I have been getting information from my friend Val Surbey since she decided to get help for other families needing support on FASD. So to say the least I have been helped by "faslink" since it started. Now with my own computer and printer I continue from where Val started me -educating my other friends, foster parents, teachers and anyone with an ear to listen. I continue to get valuable information to help me raise my FAE/FDE adopted son and my FAS foster son from the link. So not only do I get support from "faslink" but anyone I have contact with has benefited from my having joined "faslink". This is an invaluable service that I have been proud to say helps people around the world. From what I have read in posts from Bruce Ritchie I know the good work and support that this link provides will continue in his capable hands. The support and the archives must continue as FASD can be stopped with the education of future generations. The word will spread one person at a time but it will continue to spread! For now we "faslink" must help the generation we are raising met their full potential, and be there to support their care givers.

Bev Eastcott - gbkeastcott@mb.imag.net
If it is to be it is up to me! Ten 2 letter words to think about!


From: "Susan Egert" <sue@webadnet.com>

Thank you from the bottom of my heart. I was thrilled to see that faslink will continue because of your effort to keep it going. We really need a place to share info that is totally neutral...Again thanks sooooooooooo much!!!

Sue Egertsue@webadnet.com
ICQ 8620510
Altamonte Sp. Florida
web site at www.webadnet.com/fas