|Fetal Alcohol Syndrome Worldwide Organization to Reeducate Leaders and Decisionmakers|
FASDAY USA FASworld Canada
September 9, 1999
In One Magic Minute, We Can Change the World: 1999/9/9 9:09 am
In late February of this year, a small group of burned-out parents, most of whom had never met face-to-face, set out to change the world.
We are parents of children with Fetal Alcohol Syndrome or Fetal Alcohol Effects (aka FAS/E), a group of disabilities caused by maternal drinking during pregnancy. FAS is now the leading cause of mental retardation in western civilization. one which could be totally prevented. FAS/E affects about 1 in 100 people in North America, about 4 times in incidence of AIDS/HIV. (There are about 3 million people with FAS/E in the U.S., and 300,000 in Canada, most undiagnosed.) In Eastern Europe and countries of the former Soviet Union, the rate of undiagnosed FAS may be higher.
Our original volunteers were mainly adoptive and foster parents, plus a small but committed number of mothers in recovery, who have been working hard to inform and support other women with substance abuse problems. All of us lived daily with children whose prenatal damage caused mental retardation or learning disabilities, plus severe acting-out behaviour that disrupted our lives and their classrooms, and often physical problems requiring much medical attention. For most of us, life revolved around our children's crises: most mothers had been forced to abandon any thought of full-time career.
Frustrated by the lack of public awareness of FAS by both public and professionals, we had sought help for our problems on the online support group, Faslink, for two years or more. And on that February day, we began to wonder:
What if, on the ninth minute of the ninth hour of the ninth day of the ninth month of the year one thousand, nine hundred and ninety-nine, we asked the world to remember that during the nine months of pregnancy, a woman should remain alcohol free? And, what if we also asked the world to remember those millions of people who will never fulfill their genetic potential, because of prenatal alcohol exposure? At this magic minute in history, could we begin to change the world?
And we began to work on it, building alliances, with only the help of the Internet. Our group grew to include about 70 volunteer coordinators in eight countries. Our northernmost volunteers are in Alaska, Yukon and Nunavut, our southernmost in New Zealand. We've had FAS Day proclamations from many cities and towns, and several U.S. states.
FAS Day will begin in Auckland, New Zealand, where "Minute of Reflection" bells will ring at 9:09 a.m., at Mt Albert Methodist church. Now it moves to Adelaide, Australia, and then to South Africa, where at 9:09 a.m., Cape Town volunteers will gather to hear the War Memorial Carillon that rang when Nelson Mandela was released from prison. Volunteers in Italy, Germany and Sweden will be holding events -- and now FAS Day crosses the Atlantic. There will be events in every time zone across Canada and the U.S., including ringing of carillons in Toronto, Niagara Falls, Hastings, NE, and Austin & San Antonio, Texas. The westernmost activity will be the community breakfast on the tiny island of Kitkatla, B.C., near the Queen Charlotte Islands, where the village bell will ring at 9:09 a.m. followed by prayers in the native tongue by village elders.
We're missing a few international time zones. We've done it all on $100 in donations, plus thousands of volunteer hours. It's been a labor of love and passionate commitment.
And all of us believe that in one magic minute, we really will begin to change the world.
Sample Proclamation for USA
FAS Day proclamations issued in the following cities:
Kenora, Keewatin & Jaffray Melick, Ontario
Cincinnati, Columbus, Toledo, Perrysburg, Maumee, Sylvania, and Bowling Green, Ohio
Austin and Pflugerville, Texas
article by Bonnie: Ketchikan Kanoe, Aug. 18
article by Bonnie: Chicago Tribune, to run Sept. 9
article on FAS/FAS Day: St. Paul Pioneer, Aug. 26, 1999
article on FAS/FAS Day scheduled for Toronto Star, labour day weekend
article on FAS/FAS Day scheduled for Calgary Herald, labour day weekend
Long Item on Vision TV public affairs show, "Skylight," currently unscheduled
5 items on CBC radio Toronto, "Metro Morning."
article by Bonnie: Beach Metro News, Sept. 7
article scheduled in Sick Kids Hospital newsletter
item on CTV national news promised, not scheduled
CCSA Newsletter (national)
The Tatler, Cape Town, S.A. – Lourens family
Kieler Nachtrichten, Kiel, Germany – Poison Through the Umbilical Cord, April/99
Kindeswohl, Germany – (magazine about children) Aug./99
Mittendrin (magazine from Bundesverband behinderte Pflegekinder) July/99
The Woman Magazine, UK – Ann Gibson article
The Navigator newsletter in Tucson, Arizona by Teresa Kellerman
The Toronto Star September 3, 1999
Editorial to above article September 3, 1999
The Daily Courier 8-25-99 -- Nola Barry of Kelowna- 3 FAS adopted native children
Chatelaine Connects Aug.'99 "Why do I stay?" by Carol LePage
The Tucson Citizen -- Born on the Bottle, Drunk for Life
Parent News Online Internet article by Barbara Ferguson in Chicago.
Aukland, NZ: Breakfast for FAS supporters, Minute of Reflection bells ringing in nearby Mt. Albert Methodist Church. Events also planned in Wellington, Hamilton and Invercargill.
Cape Town, South Africa: program outside historic 37-bell War Memorial Carillon, which rang when Nelson Mandela was released from prison; radio interview.
Kiel, Germany: posters, buttons, info stand in town centre; information evening for Social Services, teachers, physicians; famous restaurant giving free nonalcoholic drinks to pregnant women all day long; info stands also in Berlin, Flensburg and Hamburg.
Iqualuit, Nunavut: numerous events such as church bells, visual arts exhibit includes soapstone carving donated by famous artist Ookpik Pitseolak, showing drinking mother with baby in "amouti" (parka hood.)
Toronto, ON: program outside Metropolitan United Church includes international lullabies on church carillon, native drum dancers, prayer in English and Ojibwa by native elder, words of hope from Rebecca Cave, who lives with Fetal Alcohol Effects, and Dr. Carolyn Bennett, MP.
Kenora, Keewatin, Jaffrey Melick, ON: poster distribution to doctors' offices, three-level curriculum offered to teachers,
Toledo, OH: Day-long activities include hot-air balloon with words on it, "FAS: THE HIDDEN PLAGUE" and matching yellow "Hidden Plague" T-shirts.
San Antonio, TX; Day-long information program for teachers and others concerned with FAS, includes presentation from Austin FAS parent Claudia Barker explaining the use of the B.C. Ministry of Education's "A Resource Guide for Teachers."
Austin, TX; program built around the 56-bell Kniker Carillon at University of Texas.
Lakeland, AB: five communities participating in day-long events, including poster blitz, mall display, bars offering "pregnant pause" nonalcoholic drinks for pregnant women, church bells ringing, junior high school students making FAS Knots, proclamations in all five communities.
North Vancouver, B.C. Co-ed sweatlodge held by "Change of Seasons Society" with traditional pipe ceremony, prayers at 9:09 a.m., on Capilano Reserve.
Port Orchard, WA: Bells of United Methodist Church, at the edge of a scenic hilly bay overlooking the Pacific, plus prayer ceremony. "Bells can be heard for miles and miles."
Kitkatla, B.C.: Community breakfast in tiny village on isolated island near the Queen Charlottes, featuring local church bells, prayers by native elders in native tongue.
New Jersey: News interview open house and presentation to Healthy Mothers Healthy Babies.
Wichita, Kansas: 1st United Methodist Church and College Hill Methodist church bells will be rung, Info Sharing at WALMART.
Tucson, Arizona: St. Augustine Cathedral bells will be rung, breakfast media gathering to announce birth of Fasstar Enterprises.
Kearney Nebraska: KKPR 1460 AM radio interview to be aired on 9-9-99.
Kansas University Campanile chimes will play "Rock-a-Bye Baby" on 9-9-99.
Sioux Lookout, Ontario: Sharing Circle with wind chimes and rain sticks.
Minneapolis, Minnesota: Courthouse Rally with Susan Carlson, bells rung at a many Twin Cities churches.
95% will have mental health problems;
68% will have "disrupted school experience";
68% will experience trouble with the law;
55% will be confined in prison, drug or alcohol treatment center or mental institution;
52% will exhibit inappropriate sexual behavior.
more than 50% of males and 70% of females will have alcohol and drug problems;
82% will not be able to live independently;
70% will have problems with employment
2. Fetal Alcohol Syndrome. Diagnosis, Epistemology, Prevention and Treatment, Washington Institute of Medicine, National Academy Press, Stratton, K., Howe, C., Barraglia (Eds.,) 1996.
3. Journal of the American Academy of Child and Adolescent Psychiatry.
4. Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE), University of Washington School of Medicine, Department of Psychiatry and Behavioral Sciences, 1996.
5. See above source.
6. Fact sheet, Current Perspectives: Fetal Alcohol Syndrome, Alcohol-Related Effects, Dr. Calvin R. Sumner, M.D., West Virginia University, Department of Behavioral Medicine and Psychiatry (undated), quoting study from National Council on Alcoholism and Drug Dependence, (U.S.)
7. Multiply the 300,000 Canadians currently affected by FAS/E by $2,000,000 = $600 billion.
"Disease of the Week?"
As there are so many worthy illnesses and disabilities, people sometimes ask why we want to single out FAS for an official day. Here are nine good reasons -- one for each month of pregnancy:
1. FAS is the largest known cause of mental retardation in most industrial nations.
2. FAS is more than a disability – it's a social disorder which causes of many of the expensive problems which plague governments, and all of us. On both a financial and personal level, we are all affected by the secondary disabilities of FAS and FAE: learning disabilities, early school drop-out, juvenile delinquency, poverty, chronic unemployment, sexual acting-out (promiscuity, early pregnancy, prostitution or sexual assault), mental illness, homelessness, violence, crimes against property, alcoholism and addiction.
3. The general public, not to mention many professionals, know very little about either FAS, or the fact that no amount of alcohol in pregnancy has been established as safe for the fetus.
4. FAS has the largest incidence of any birth defect. In Canada and the U.S., of 10,000 births, 3 out of 10,000 will have Muscular Dystrophy. There will be 4 with HIV infection, 4 with Cystic Fibrosis, 8 will be born with Spina Bifida, 10 with Down Syndrome. 20 will have Fetal Alcohol Syndrome, and another 100 will have Fetal Alcohol Effects, which will probably never be diagnosed.
5. The secondary disabilities of people with FAS are costing the taxpayers far more than any other disability. Some economists have estimated that every individual with FAS will cost the U.S. taxpayers a minimum of $1.9 million in his or her lifetime.
6. FAS could be totally prevented.
7. People with FAS tend to have many children, who generally also have FAS. It is not unusual for a young woman with FAE to have given birth to four or five children damaged by alcohol or drugs by the time she is 21 -- and the cycle continues.
8. There is no "inclusiveness" for people with FAS. In general, our society has very little compassion for those thousands of individuals whose damaged brains lead them to crime, homelessness, and addiction. Instead, we assume that they have chosen to behave as they do. Few people realize that the severely acting-out teenager, the addicted prostitute, the homeless beggar, or the man charged with killing his girlfriend's baby may all behave as they do as the result of brain damage caused by their mothers' drinking in pregnancy.
9. We can beat FAS, just as we have beaten other health disorders. Prevention programs and treatment programs for alcoholic women could dramatically reduce the incidence of FAS. Early diagnosis and new techniques of therapy, medical treatment, education, and residential facilities, could allow people with FAS to lead productive lives. And save our nation millions of dollars that could be diverted for other disabilities.
Last update: September 17, 1999 at 10:30 p.m. EST