Service Dogs for #FASD – Do they make a difference?

Broken hearts, threads of opportunity, and fur-covered love

This is a story of broken hearts, Titanic alcohol damage, and second chances. It is a story I have been blessed to help unfold over the last six years; a story that joyfully, and brilliantly, is becoming very well known, despite its being started by epic unraveling thousands of miles away.
A little background: an eternal optimistic opportunist, I see 50 ways something will work where most sane folks only see downside. Where others see a single thread, I see entire tapestries. It is a blessing and a curse.

I needed a thread or two back in 2006 when I was working on a 5K fundraising race/walk to raise awareness for fetal alcohol spectrum disorders (FASDs). FASD is an umbrella term used to describe the range of effects that can occur to an individual whose mother consumed alcohol while pregnant. The most severe form of FASD is called fetal alcohol syndrome (FAS). FASD is not “a warm and fuzzy” cause; people do not get all whoopty-do about it. Most would rather NEVER hear about it, much less tell our sisters they can’t have a glass of wine for nine months. So when I heard about a particularly enthusiastic participant in the race, I was eager to meet her.

So I met Donnie Winokur, a wisp of a woman with intense brown eyes and wildcat mother energy; that “I-will-fight-to- the-death-for-my-children-and-kick-your-butt-from-the-grave” urgency that I, as a long-time single mom, had run on for years.
Donnie’s urgency was about learning as much as she could, and connecting with as many people as possible, to figure out what to do for a precious little boy who was in a world of hurt, hurt that was hurting everyone in his world.
The little boy was her son, a dream-come-true who’d been adopted, like his sister, from an orphanage in Russia, on what was a kind of second honeymoon for Donnie and her husband, Rabbi Harvey Winokur. “We didn’t try to get pregnant for long, opting instead, since we were older and this was the second marriage for both of us, to start the adoption process not long after we got married,” she said.
To cut to the chase here, Donnie and Harvey’s son and daughter, adopted in Russia and brought home to Roswell, GA in 1999, made them an instant family. The daughter developed beautifully, and today, at 14, is, physically and intellectually so much like her adoptive mother it is as though their souls were roommates in heaven for a million years before they were both made human.
The dream-come-true story with the little boy, however, started crumbling about the time he turned three, when epic meltdowns, mood swings, and rages grew in intensity as the little boy grew in size and strength.
After many consults with many doctors, the truth unraveled in the form of a “broken” umbilical cord. You see, the boy’s Russian birth mother might have been an alcoholic. Or not. Or she might not have known she was pregnant when she drank alcohol. Whatever the case, she’d had enough to drink at some point during her pregnancy with this precious child, that his brain had been hurt badly. Very badly. The very cord that gave him life also delivered deathly alcohol to his developing brain, affecting, in particular, the parts of his brain that regulate mood, emotions, memory, and the ability to communicate, discern, and deal with “no.”
I met a desperate Donnie Winokur a couple of years into her sometimes frantic search to learn about her son’s FAS, and to find anyone and everyone who might be able to help keep this family, knit together from oceans apart, from unraveling.
She was an enthusiastic volunteer. And opportunist that I was, I saw a face for this cause.  She became, once some trust was established, a willing accomplice. She, too, saw tapestries where others saw threads.
I asked for an interview. She let me write her story, using her talents as a journalist to help edit it, and her wildcat mom energy to be sure I told it tenderly.
I asked to feature her family in a video. She had a persuasive dialog with the reluctant rabbi, who ultimately let us film in the synagogue. The video was a hit at our fundraiser.
I asked her to be on a fundraising committee. She did it.
I asked her to give me input on a book I was writing about stopping the cycles of addiction and abuse, my way of using my pain to help myself and others.  She helped. We cried. We laughed. Our friendship deepened.
I asked if I could write a fundraising letter about her story. We made money on the letter and gathered new advocates for our cause.
She told me she wanted to get a dog to help her son, a dog that would be the first service dog ever to help a child with FAS by sensing an immanent outburst and using its love to help calm the child in ways no human can. I told her I thought it was a brilliant idea. She told me her husband was dead-set against it. I told her, from experience, that mothers do rabies-crazy things because we are so in love with our children, and to listen to her mom-gut.

She and her precious father and children brought home fur-covered love – a rescued golden retriever named “Chancer,” because hers was his second family; his second chance at love – that helped her son, and ultimately and became the rabbi’s best friend.
We did another video. The CDC did a video about her family and their experience with FASD in hopes of raising awareness of the fact there is no safe amount of alcohol, or safe time to drink, if you are pregnant or could be pregnant.
We had awareness-building and fundraising schemes, dreams, and roadblocks that, as we climbed over them, made us stronger. And a little tired. After all, we’d hit our 50s together. And as we crossed that milestone, I told her that her story was so remarkable, so compelling, that it needed to be made into a movie. I said I was not sure how, or when, but that somehow, some day, their story needed to be made into a movie to help raise awareness for FASD, and awareness of the vitally important role Chancer’s fur-covered love had played in their lives. “Imagine how much it would educate AND inspire,” I kept saying.
Well, Donnie was working on three books and we were both run ragged by children and traffic and board meetings and life and events and she decided to put her focus into the books. I had ups and downs with employment and life. We stayed in touch, with emails and phone calls and rushed lunches or coffees and even a rare girls’ night out, just two moms and Chancer, that handsome dog. I kept imagining their story being told “on the big screen,” but did little to advance that other than imagining it. And mentioning it when Donnie and I would catch up.
Through the years — six years from our first meeting — the story was been told in an incredible award-winning book by Donnie’s daughter, and in a second book, also published by Better Endings, New Beginnings, that has garnered international awards and is the story of, and “written by,” Chancer!  
Then, in an epic feature spread in the New York Times Magazine (2.5.12), a best-selling author wove this story and all its intricacies and miracles together so beautifully that I firmly believe there is a thread-for-thread matching tapestry of it hanging in heaven. And now, with luck, we won’t have to wait too long to SEE the story being told.
You see, Donnie connected with a group of movie producers – Hot Flash Films – and they have seized this unique opportunity to help Donnie do what she is so very, very good at doing: making sense of her family’s pain by using her experience, strength, and unfailing optimism to help others. 
The update as of November, 2012, is that Chancer’s story WILL become a movie! It is being written by Writer/Co-Producer Karen Hall, who wrote the script for the legendary movie “The Betty Ford Story” and has written for some of the most well-known TV shows of the last 30 years. The movie will be brought to the screen by Emmy Award winning director Martha Cotton.
And so dreams are coming true. I am just wondering who’ll play ME in the movie. 
For more information about Donnie Winokur, her family, and Chancer, the “wonder dog,” click here.

Carey Sipp’s first book, The TurnAround Mom – How an Abuse and Addiction Survivor Stopped the Toxic Cycle for Her Family, and How You Can, Too, guides fellow “children of chaos” to create the kind of sane and loving home life that helps prevent next-generation addiction and abuse. Follow her on Twitter @TurnAroundMom.

Read more articles by Carey Sipp here.

10 Holiday Tips for Persons Living with the Challenges of Fetal Alcohol Offered by Adult Living with Challenges of FASDs

From Liz Kulp
(adult with FASD and core network provider for young people with FASD)

I prefer my life stable… 
every day I have a plan I can maintain. 
It keeps me on track. 
When the world moves so fast around me 
it is important that I take care of myself.




  1. Make appointments on the same day and the same time. Taking a break from an appointment may be a break for you, but for me it messes up my consistency. 
  2. Shop during quiet times when the lines are the shortest. For me this is late afternoon when I have eaten and am rested. When many people are still at work and before they “stop” at the store to get supper food. I still hate standing in line. I get anxious. I impulse buy. If it is going to be busy – I take someone along to stand in line while I go to the bathroom and regroup.
  3.  Be respectful of my understanding “I don’t do sarcasm” Words can hurt. When I have been hurt enough times I lash out. The problem is I don’t always know when I don’t understand. Most times I understand “EXACTLY” what you said – just not what you meant.
  4.  Even as an adult I have sensory issues. Fluorescent lights still make my world move around me and give me headaches. It is hard for me to sit for long periods of time without getting up. I still need to move often to remain calm.
  5. Wrap my gifts simply. All the tape and ribbons frustrate me and by the time I have opened the gift – I am less appreciative. Seriously gift bags or a filled stocking is great!
  6. Provide some of my comfort foods. There are certain things I like to eat and though I am willing to try most things my teeth and mouth still do not do carrots, celery or nuts. For me it’s the crunch I can’t munch. The texture I can’t do. The temperature of the food also can be irritating. I know it is a sensory thing and I have tried to overcome it, but those two things still remain. Let me substitute some of my choices – I try to pick two new – and then stay with my tried and true.
  7.  Let me use a flat bowl instead of a fancy dinner plate. I will not be embarrassed because I am using a bowl, but I will feel bad if I spill food on your fancy tablecloth. My coordination is not always on task and it is easier for me to pick up my food. Give me the option of plastic glasses without stemware. Understand that if I leave the table during the meal – I may be getting overwhelmed.
  8. Know that it takes me longer to understand new events, new places and new people. When all of these things happen at the same time if can be over-stimulating.
  9. Don’t speak down to me. Use normal language and stick to the facts. I love people. I love to laugh and I am a good friend to others. Take time to get to know who I really am – not by appearances or mistaken actions.
  10. I wear a tight shirt under my clothes that helps me hold it together in sensory issues. When I was a little child our family served food at a food center and Mom and I were clowns, it was fun to hide behind all the make up and bright clothes and pass out fun things for the children.
Have a Happy Holiday – find something to take care of you. We need resource people who are calm, friendly and honest in a kind way with us. 

Have a good year – Liz.

#3 Days To FASDay – Dog takes a stand on fetal alcohol

If a dog can do it so can we!

Each one of us can reach a new person this coming year. For those of us who live with the realities of FASD, it is our job to share this knowledge. 

Last year we asked…

Could we use the woof of a dog to build FASD awareness?

So Chancer, Iyal Winokur’s service dog woofed in …

  • The New York Times (February 2012) Wonder Dog – A golden retriever reaches a raging boy by Melissa Fay Greene
  • Readers Digest Canada (May 2012-Pages 84-91) Creature Comfort – A golden retriever did what the Winokur family could not—he befriended an soothed their raging son by Melissa Fay Greene
  • Guidepost (September 2012)  A Dog’s Devotion Brings Healing— She had no idea how severe her adopted son’s problems would be—or what form the answer to her prayers would take. By Donnie Kanter Winokur, Roswell, Georgia
  • Entro Magazine (June 2012-Pages 24-25) Building Bridges to Success for Children Living with Fetal Alcohol Spectrum Disorders
  • Adoption Today (October 2012) shhhh…. it’s coming! 
  • Another potential BIG SURPRISE – keep posted to Silent Voices Blog and be the first to know!

How can you take a stand…
  • Miss Illinois talked about FASD when she represented Southern Illinois – she is an expert from the inside out
  • Karl Kulp told his classmates at his 50th Class Reunion – “The most important thing I have done in my life, that I am the most proud – is raising my daughter who lives with the daily challenges of fetal alcohol into an interdependent adulthood.” 

Stand up in your congregation this weekend! And share your story!


If we want to create an “REAL” Economic Stimulus Package – now is the time to begin promoting “Building Better Baby Brains” by Raising the Standard for the Future – Alcohol and Babies don’t mix and add to the future cost of education, medical, community and judicial services.
  • Join our virtual Million Mind March to give One Million Babies in the next year the opportunity to develop healthy minds

Participate in a Local Radio Show and Get Your Events Talked About
Call your local radio show and see if you can get on a program to talk about FASD during the next 60 days. You may just open up some minds and save a few baby brain cells.
Visit:

Step out, speak out, get out and make some friendly noise to build awareness of FASD – fetal alcohol spectrum disorders.

#7 Days To FASDay – You only need one minute

More Ideas for Minute of Reflection


Everyone participating in FAS Day is invited to share in the “Minute of Reflection” 9:09 a.m. on September 9, as it goes around the world.

In this magical moment the ninth minute of the ninth hour of the ninth day of the ninth month we want to get out the message that in the nine months of pregnancy, while breastfeeding or planning to conceive, women should not drink alcohol.
In this minute, we also want the world to remember those millions of people around the world who are living with fetal alcohol disorders. If a large bell or carillon is not accessible or appropriate, participants can do many things to observe that special minute in accordance with their own cultural background or religious beliefs.

The Minute of Reflection symbolizes the worldwide circle of community which links all of us who care about FASD, all of us who are working towards prevention, all of us who are trying to help children and adults with fetal alcohol disorders reach their full potential. Here are nine more suggestions for observing the Minute of Reflection. If you have other ideas, please share them with us.

  • Alone or with others, sit outside quietly and listen to the birds, or the wind blowing through the trees, or water lapping against the shore of a river or lake. You may want to focus on the wonderful gifts and strengths of the person(s) with FASD in your life.
  • Say a prayer or recite a poem appropriate to your beliefs or culture.
  • Sing a song or hymn.
  • Listen to an excerpt of your favorite music. (Any suggestions?)
  • Play a musical instrument, alone, or with fellow musicians, or ring tiny bells and “triangles” as the children of Queen of Apostles School, Toledo, OH did at 9:09 a.m. on September 9, 1999.
  • Sit in a circle and share some pure spring water with people you care about.
  • Place a long-distance phone call to a special friend who is equally committed to the FASD issue: you could even make it a three-way or teleconference call.

You may find 9:09 a.m. inconvenient and may prefer to mark the Minute of Reflection at 9:09 p.m., and light a candle to symbolize both the flame of your love for individuals living with FASD, and your burning desire to eradicate this preventable birth defect.
Simple silence.
Each person with FASD is different, and those of us who love them respect their differences. Respecting each other while working together is what FASDay is about.

#8 Days To FASDay – Write a letter to the first lady

How to Write a Letter to 

First Lady Michelle Obama


Dear First Lady Obama
let me tell you about FASD

As part of International FASD Awareness Day, please join us in this easy, free activity to help raise awareness of FASD at the highest levels of our government.

This idea originated with Tami Eller, a member of our local FASD Council.
Cheri Scott, FASD Family Support Project
Stone Soup Group
www.stonesoupgroup.org

If you would like to write a letter to First Lady Michelle Obama there are certain steps you need to follow. While you may feel comfortable writing letters to your friends and family this letter needs to be formal and concise. Please follow these steps to correctly send the First Lady a letter.

________________________________

Dear First Lady Michelle Obama…

Let me tell you about FASD

International FASD Awareness Day Letter Writing Campaign

Did you know that First Lady Obama reads 10 letters each night written by everyday Americans?
Imagine if every letter the President read was written by someone whose life is impacted by Fetal Alcohol Spectrum Disorders.
If everyone affected by FASD writes to the First Lady prior to 9/9 then the probability of her opening even one letter regarding FASD is incredible.
The more letters, the higher the probability that all ten letters she reads will be written by those affected by FASD.

  • Are you a parent of a child with FASD, are you an adult with FASD?
  • Does your sibling have FASD?
  • Do you teach a child or an adult with FASD?
  • Are you a grandparent of a child with FASD?

For everyone person born affected by prenatal exposure to alcohol, everyone who loves that individual lives are also affected.

Join us in educating our First Lady regarding the most prevalent of all birth defects: Fetal Alcohol Spectrum Disorders.

Join us in asking our First Lady to ring a bell at 9:09 am on September 9, 2009 to recognize the importance of Nine Months of an Alcohol Free Pregnancy.

Tell your story of how Fetal Alcohol Spectrum Disorders have affected yourself and those you love.

Send First Lady Obama a letter to at:
First Lady Michelle Obama
The White House
1600 Pennsylvania Ave NW
Washington, DC 20500

Send First Lady Obama an email by filling out the form at:
http://www.whitehouse.gov/contact

Talking Points

* The Facts:
* Fetal alcohol exposure is an international and national crisis
* Prenatal exposure to alcohol causes permanent brain damage
* Prenatal exposure to alcohol is the leading cause of mental retardation
* Fetal Alcohol Spectrum Disorders are 100% and easily preventable – simply no alcohol consumption during pregnancy
* Fetal Alcohol Spectrum Disorders are a life long disability – from cradle to grave
* More babies are born with Fetal Alcohol Spectrum Disorders than Autism Spectrum Disorders or Downs Syndrome
* There is no safe amount of alcohol to drink during pregnancy
* It is estimated that more than half of the prison population is affected by FASD
* Prenatal exposure to alcohol costs the United States millions of dollars a year to provide services to individuals affected by a FASD
* Early identification and intervention has huge impacts on the reduction of mental health concerns and behaviors resulting in legal intervention
* Even with early identification and intervention,individuals with a FASD will need to lifelong supports
* The Daily Realities of Living with Fetal Alcohol Spectrum Disorders

As a Parent:
* Struggles with you have raising your child with FASD
* Struggles you have explaining the invisible brain damage to others who deal with your child
* Struggle finding appropriate services for your child
* The lesson you have learned in your journey of raising a child affected by FASD
* Your dreams for your child

As an Adult affected by FASD
* Struggles you had to overcome in your lifetime
* Strengths and talents you have
* Accommodations that enable you to be successful

As a Profession working with individuals affected by FASD
* What systematically is working for your clients
* What systematically is not working for your clients
* Struggles your clients face on a daily basis
* Struggles you face on a daily basis in obtaining resources for your clients
* What resources are necessary for your clients to be successful
* What needs to happen
* Proclamation by the President of the United States recognizing September 9th as International Fetal Alcohol Spectrum Disorders Awareness Day and the importance of abstaining from alcohol during pregnancy
* Ask him to ring a bell at 9:09 am on September 9 in recognition of the individuals affected by FASD.
* Diagnostic teams in all 50 states to facilitate and identify early diagnosis and intervention
* More resources toward prevention and early intervention

#25 Days To FASDay – Information table

FASD (Fetal Alcohol Spectrum Disorder)
Information Table

You may want to have an information table, which can include the FAS Knot, a cash box for donations, and relevant local material.

  • Correctional Service Canada has produced a well-written research report, “Fetal Alcohol Syndrome: Implications for Correctional Service” which is applicable to most English-speaking countries, and is also available in French. It’s available, free, in bulk, from the Research Branch, Correctional Service of Canada, 340 Laurier Ave. West, Ottawa, ON K1A 0P9, or phone Tina Bada at (613) 996-5222, fax (613)996-2867, reslib@magi.com
    It is full of facts and figures about FAS/FAE, relating to the lifespan of the affected individual, and includes recommendations for changes in the criminal justice system, taking into account the needs and disabilities of offenders with fetal alcohol disorders. This report would be particularly useful for members of the media who would like more information on the secondary disabilities of people with FAS, which make them susceptible to getting in trouble with the law.
  • Your committee might consider making various petitions available, and Bonnie Buxton ogrady@axxent.ca can suggest a number which might be appropriate.
  • We particularly like a “declaration” for men to fill out, promising to support their wives, partners, sisters, daughters, and friends in sobriety when pregnant. This declaration was developed by the Lakeland FAS Committee, in northern Alberta, Canada. The complete petition form can be downloaded at www.come-over.to/FASDAY/FathersDec.htm

Encourange Partner Declarations
The partner declaration, in the form of a petition, reads:

“I am aware that alcohol exposure during pregnancy may cause irreversible brain damage to the baby, therefore, I declare that I will support and encourage my partner, friends and family members to be alcohol free during pregnancy.”

FAS fact sheet and educational handouts
There is a file called FASdisk that can be downloaded in its entirety or just selected documents. The FASdisk can be found at http://come-over.to/FASdisk/

Suggested documents include:

#26 Days To FASDay – Free FASD videos


Special thank you to our New York team of Advocates who prepared this video and to all the children, teens and adults with Fetal Alcohol Spectrum Disorders (FASD) who offered their pictures to put a FACE on FAS.

Help us “Raise The Standard” for our next generation!

Person First Language from MOFAS – 
this will help you promote awareness honorably to all

Not only must we walk the walk – we must talk the talk.
Yes, person first language takes more space to write and more time to say, but the end result allows for respect in honoring the strengths and abilities of another person.

Watch the MOFAS tutorial and give it a go for all your FASD presentations.



Use Teresa Kellerman’s video

in your presentations on Fetal Alcohol to build awareness.
This is worth watching – very short

Want the facts about alcohol use during pregnancy?
Here they are.
All sources are cited at end of video.
More information available here: www.come-over.to/FASCRC

More videos you can use from YouTube
(search FASD or fetal alcohol on You Tube to review – NOFAS has an excellent new series)




Recovering Hope is an intimate and evocative video about the mothers and families of children who are affected by Fetal Alcohol Spectrum Disorders (FASD). The video, created for viewing by women in recovery and their counselors, is divided into to half-hour episodes to allow time for discussion within a treatment session.

Eight women tell poignant, memorable stories. They speak out about how alcohol use during pregnancy affected their children, how they are learning effective new ways to parent, and how they are recovering hope for the future. Six researchers and clinicians support these stories by explaining the physical, mental, behavioral and learning disabilities associated with FASD and discussing evaluation and intervention services

Need a speaker? Check out the http://www.nofas.org/ Resource Directory for US speakers

Online Manual – www.fasday.com
Seminar – Or try our easy, effective, exciting 1½ hour program that walks you
 through the morning of Sept.9: http://www.come-over.to/FASDAY/ABCDEFG/ 
(material from 2002 has excellent ideas)


Follow us through the next 60 days and plan your local or personal project to build awareness of fetal alcohol spectrum disorder – Each One Can Reach One!

Need family support visit www.toolboxparent.com
Need ideas for adults living with challenges of FASD visit www.braidedcord.net
Need information on fetal alcohol spectrum disorders visit www.betterendings.org
Interested in service dog for FASD visit www.thechancerchronicles.com


#29 Days To FASDay – How to make a FAS Knot

TIE SOME FASKnotsand Pass Them Around Town or School

The FAS Knot – A Symbol for Our Time
We have been pleased by the enthusiasm that volunteers from New Zealand to Arctic Alaska and Canada’s northern territories of Yukon and Nunavut to South Africa have expressed for our unique, wearable symbol, the “FAS Knot.” Each FAS Knot can be easily made in about a minute, for less than ten cents, and can be used as a fund-raiser ($2-$5 each) or given away as reminders of the work we all do to help prevent FASD.
This piece of knotted cord was designed in memory of Abel Dorris, 1968-1991, whose brief and poignant life resulted in the groundbreaking 1989 book about Fetal Alcohol Syndrome, “The Broken Cord,” written by his father, Michael Dorris, 1945-1997.
The broken cord may refer to the umbilical cord, the spinal cord, the nervous system, the cord between the generations, or the cable on an elevator. Michael Dorris wrote that if we back off on our children with Fetal Alcohol Syndrome or Fetal Alcohol Effects (i.e. Alcohol-Related Neurodevelopmental Disorder), they will sink and crash like an elevator once the cable is snapped.
Years later, a loving community around the world reconnected the broken cord, and the FAS Knot is our symbol. The cord is tied in a square knot, sometimes called a reef knot, the favored knot for reconnecting a broken line or cord. The knot is stronger than the cord itself, and cannot be broken or snapped.
To make the FAS Knot, we suggest an eight-inch piece of 3/16″ white cord, available in most hardware stores for a few cents per foot. You make a circle approximately the size of your thumb, then tie right over left and under; left over right and under. It should look like two loops intertwined. (Volunteers in Germany and New Zealand use a thinner cord, and make a more discreet knot. The choice is up to you.)
By choosing a cord instead of a ribbon, we are separating ourselves from all of the other campaigns. We are not just another cause trying to raise money – we represent those millions of individuals and their families who have gone unrecognized, unidentified, neglected on this continent and throughout the world.
The circle symbolizes the womb, a baby’s head, the human brain, the earth. And we, a planet-size network of people who care about people living with FASD, are the knot that will make them whole. If women did not drink in pregnancy, FASD would be totally eliminated.
Our long-range goal is to rename this small piece of cord, “The FAS Not!”
The FAS Knot lapel pin is a more recent innovation and can also be used for fund raising. Many groups resell the pin for $5 or $6.
The pin is available for the low cost of C$3/pin for orders of 25 or more. Shipping is free for orders of 100 or more. The pin is white enamel with a faux gold edge and is approximately 1.8 cm wide. The FAS Knot lapel pin is a registered trademark of FASworld Canada. The lapel pin may not be replicated, copied or incorporated into any other design without specific written permission from FASworld Canada.
The original FAS Knot was designed by Bonnie Buxton and Brian Philcox, and is an official symbol of FASworld. You can find step-by-step photos above. We encourage groups supporting FASD endeavours to use it for promotion or fund-raising, and ask only that you notify us before doing so.

E-mail us at info@fasworld.comHow to Make a FAS Knot

THE FAS KNOT STORY

“A threefold cord is not quickly broken.”
–The Bible, Ecclesiastes IV, 10

In 1999, volunteers from New Zealand and South Africa to Nunavut used the FAS Knot as a symbol of our worldwide campaign to inform the world about Fetal Alcohol Syndrome and related disorders.
This piece of knotted cord was designed in memory of Abel Dorris, 1968-1991, whose brief and poignant life resulted in the groundbreaking 1989 book about Fetal Alcohol Syndrome, The Broken Cord, written by his father, Michael Dorris, 1945-1997.
The broken cord may refer to the umbilical cord, the spinal cord, the nervous system, the cord between the generations, or the cable on an elevator. Michael Dorris wrote that if we back off on our children with Fetal Alcohol Syndrome or Fetal Alcohol Effects, they will sink like an elevator once the cable is snapped. Ten years after Dorris’s book, a loving community around the world reconnected the broken cord, developing the FAS Knot as our symbol.
Each knot can be made easily and cheaply in less than a minute. The cord is tied in a square knot, sometimes called a reef knot, the favoured knot for reconnecting a broken line or cord. The knot is stronger than the cord itself, and cannot be broken or snapped. You may want to sell the knots for $2-$5, or ask for donations.
Volunteers in the U.S. and Canada generally use an eight-inch piece of 3/16″ white cord, available in most hardware stores for a few cents per foot. Volunteers in New Zealand and Germany have made smaller, more discreet FAS Knots, using thinner cord. Make a circle approximately the size of your thumb (possibly smaller if you use a thinner cord), then tie right over left and under; left over right and under. Using a straight pin or safety pin, pin this to your lapel or other garment with the loop above and the knot below.
Step-by-step photos of the FAS Knot may be seen on the website at www.come-over.to/FASDAY/manual.htm
We have chosen a cord instead of a ribbon, to separate ourselves from all of the other campaigns. We are not just another cause trying to raise money — we represent those millions of individuals and their families who have gone unrecognized, unidentified, neglected on this continent and throughout the world.
The circle symbolizes the womb, a baby’s head, the human brain, the earth. And we, a planet-size network of people who care about people living with FAS, are the knot that will make them whole. FAS is totally preventable. We must create a society in which everyone recognizes that there is no lower threshold for drinking in pregnancy. Our long-range goal is to rename this small piece of cord, “The FAS Not!”
The FAS Knot was designed by Bonnie Buxton and Brian Philcox, trademark pending.

Copy for FAS Knot Scroll (optional)
(You may want to print a one-page sheet, roll it up in a scroll, and tuck each one inside the loop of a FAS Knot. The sheet can contain information about the program, and also includes this information about the Knot.)

THE FAS KNOT
This piece of knotted cord was designed in memory of Abel Dorris, 1968-1991, whose brief and poignant life resulted in the groundbreaking 1989 book about Fetal Alcohol Syndrome, “The Broken Cord,” written by his father, Michael Dorris, 1945-1997.
The broken cord may refer to the umbilical cord, the spinal cord, the nervous system, the cord between the generations, or the cable on an elevator. Michael Dorris wrote that if we back off on our children with Fetal Alcohol Syndrome or Fetal Alcohol Effects, they will sink like an elevator once the cable is snapped.
The circle symbolizes the womb, a baby’s head, the human brain, the earth. And we, a planet-size network of people who care about people living with FAS, are the knot that will make them whole. FAS is totally preventable. We must create a society in which everyone recognizes that there is no lower threshold for drinking in pregnancy. Our long-range goal is to rename this small piece of cord, “The FAS Not!”

#36 Days To FASDay – Need proclamation copy?


Did you get a proclamation from a city, county or state leader?

Here’s an example of State Verbage –
but city proclamations are great too!

Office of the Governor

PROCLAMATION
*FETAL ALCOHOL SYNDROME AWARENESS DAY*

WHEREAS, healthy children are the most important resource in the great State of (your city or state); and
WHEREAS, Fetal Alcohol Syndrome is the leading cause of mental retardation in (your city or state), the United States, and all of western civilization; and
WHEREAS, as many as 1 in every 100 individuals in these United States may be adversely affected by prenatal exposure to alcohol; and
WHEREAS, Fetal Alcohol Syndrome and Effects are a root cause of numerous social disorders, including learning disabilities, juvenile delinquency, school drop-outs, homelessness, unemployment, mental illness, and crime; and
WHEREAS, economists estimate that each individual with Fetal Alcohol Syndrome and Effects will cost the U.S. taxpayer nearly two million dollars in his or her lifetime; and
WHEREAS, people around the world will be observing International FAS Day on September 9, 20___, in order that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol,
NOW, THEREFORE, I, (governor’s name), Governor of the State of (your state), do hereby proclaim September 9, 20___ as
*FETAL ALCOHOL SYNDROME AWARENESS DAY*
in (your state), to promote awareness of the effects of prenatal exposure to alcohol, to increase compassion for those individuals so affected, to minimize further effects, to ensure healthier communities across (your state) in the future.

IN WITNESS WHEREOF, I have hereunto set my hand and caused to be affixed the Great Seal of the State of (your state)
______________________________ (Governor’s name)
GOVERNOR

DONE at the Capitol in (state capital) on this _______ day of _____________ in the year of Our Lord Two Thousand and ___

ATTEST: ______________________________ (Name of Secretary of State) Secretary of State