Global Voice for Prenatal Alcohol Exposure
September 9 is a day of celebration join us in making a statement for International FASDay
CHALLENGE #1
Today we challenge you to find a pair of red shoes and walk together with us in celebration.
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Looking for the MASTER LIST of FASD Fact – Check out Yvonne Williams Blog Page – You Red Shoes Rock this Yvonne! We are always looking for local translators to put our their own blog in their own languages.
Since starting the 99 Days to FASDay in 2017, there have been updates to some posts and new ones added in 2018, 2019 and even more in 2020 with updates in research.
It became too cumbersome to remove links and release each day so for 2020 all links are valid unless an update is being made to the information.
I hope you enjoy revisiting this journey again.
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Information about COVID-19 or coronavirus seems to be all over the news these days. The government is recommending that Canadians practice “social distancing measures”, which means that people should stay home and avoid contact with one another. Events have been cancelled, schools and daycares have been closed, and the daily routines in workplaces are changing. […]
CANFASD: COVID-19 TIPS FOR INDIVIDUALS WITH FASD — Northwest Peace FASD Network
Once again, Sandra, you reach into the hearts of parenting – living, laughing, and loving a person with FASD
My every move cannot be about others. And I really do feel sometimes like I have lost a bit of me.
By SB_FASD
Stop presses!
Breaking news!
I went for a walk today.
Not a going-to-buy-slime-ingredients walk.
Not a this-dog-is-climbing-the-walls-and-needs-to-get-out walk.
Not a going-to-catch-the-train-for-work walk.
No, this was an honest-to-goodness walk. Alone. Just for me.
They talk about muscle memory. My body remembers. I once ran hard and smoothly over cross-country courses, around the lines on painted tracks, on beaches and up and down steep hills. I was, once upon a long time ago, a runner. When I stopped running, I used to go for intense walks, every morning at a fast pace, before I even had a coffee.
I was driven, in part, by the horrible illnesses my dad faced through those years. Heart attacks. Surgeries. Diabetes. Amputation. Strokes. Feeding tubes. Early death. Ironically, the closer I get to his age of death, the more lax I have become about my own health.
I can talk a good talk about…
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Anne doesn’t shy away from the truth about alcohol in pregnancy– it’s something she’s had to live with on a daily basis. — Professor Fiona Stanley
Professor Stanley continues, “Through her honesty, she has helped so many others. But while her contribution to families living with FASD is immeasurable, I think her most significant achievement is bringing her confronting message into the public arena where she has made so many people stop and ask the hard questions:
– What messages about alcohol are we giving to pregnant women?
– How as a society do we support women not to drink in pregnancy?
– What are the implications of the increase in alcohol abuse amongst teenage girls?
Awareness is the first step towards prevention.”
The first prevention video for mainstream Australians. Thanks to the Alaska Mental Health Trust for letting us use their format. Target audience 30 plus.
Anne is a birth mother of two children with Fetal Alcohol Spectrum Disorder.
Anne Russell has a proven track record in advocacy and support for children with FASD and their families. Anne has accurately identified the complete absence of local intervention options and hopes to fill this gap by updating her successful first book with a second edition − Alcohol and Pregnancy: My Responsible Disturbance. The second edition is a combination of her first and second books and the culmination of living with FASD for 34 years and supporting other families for 16. I know it’s Anne’s goal to help people understand FASD through her own lived story and to raise awareness of FASD in Australia. — from Dr. Doug Shelton
Anne delivers training and development workshops to parents, carers, drug and alcohol workers, disability workers, mental health workers, medical practitioners, midwives and other various community organizations throughout Australia.
Alcohol and Pregnancy: A Mother’s Responsible Disturbance (2nd Edition 2018)Intervention for children with FASD is a lifelong priority; the condition does not necessarily diminish when children reach adulthood. Parents and carers desperately need an Australian ‘How To’ guide that will map out a path forward and help them to plan a lifetime of intervention shifting the odds toward better outcomes. This book is that guide. Parents living with FASD reading this book will see similarities in their own situation through Anne’s and will be able to better advocate and support their own children by using strategies Anne has found helpful. If not Anne’s story then perhaps one of the other fourteen stories that are found in the latter half of the book. All will be helpful.
— Dr. Doug Sheldon
y Elizabeth Russell (2007)These collective experiences are incredibly moving and very personal stories from individuals with FASD, their carers, parents and families, all struggling to cope in a society that has little understanding or awareness of their needs. They are stories that highlight the terrible personal and societal costs of alcohol exposure in pregnancy, the alarming lack of support from health professionals and the deficiency of resources in the community to adequately and appropriately meet the needs of individuals with FASD.
“You are not alone” could have been an alternate title of this book. Elizabeth ’s concern for the carers of fetal alcohol affected people lies beneath each page. Other titles that spring to mind are: “FASD a Survivor’s Guide” and “The Care and Management of a Person with FASD” or more brutally: “You are not a bad parent, your child has FASD”. All of these titles allude to Elizabeth ’s selfless commitment to promoting awareness, educating the community and assisting with the management of this disability.
Elizabeth however, has carefully chosen the title “No blame – No shame” to emphasise that a mother does not usually deliberately set out to harm her unborn child. Elizabeth ’s pressing message to this book’s audience is that harm is occurring and that we as a society must understand why it is occurring and that we should blame alcohol, not pregnant women. — Sue Meirs, co-founder, NOFAS Australia
Strategies for Employment Services Specialists“This is an excellent book and the first of its kind in the whole world. Way to go, Anne.” — Jodee Kulp
On behalf of NESA, and the Employment Services industry I would like to sincerely express our thanks to Elizabeth Russell for her courage, honesty and willingness to share her journey of discovery with FASD in this wonderful book. Many of the people who work in the Employment Services industry will find Elizabeth’s book an absolute revelation when relating back to certain experiences and frustrations with their clients.
—Sally Sinclair CEO NESA (National Employment Services Association)
“We understand that we cannot solve the problems related to prenatal alcohol exposure on our own. That’s why working in partnership with others is critical to achieving our goals. These relationships are a key part of the work we do around Australia and we are glad to have partners who understand the importance of this work.” — Anne Russell, Founder, rffada
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I wish there were a fuller, deeper, truer understanding of FASD and generally accessible strategies for all to use.
About my FASD: FASD impacts nearly all aspects of my life, from physical ailments to the way my brain works. This is not all negative, it’s given me great strengths and abilities that the average neuro-typical person seems to be often unable to use. I think differently.
My Strengths: I’m good at reading, writing and speaking, seeing things in multi-dimensions and feeling true empathy with the world around me.
My Challenges: Math is my personal demon. Not much of a fan of long distance walking either.
My Wish: I wish there were a fuller, deeper, truer understanding of FASD and generally accessible strategies for all to use.
More About RJ
Having not received an FASD diagnosis until his late forties, RJ Formanek was startled to find how many of the strategies he had used throughout life were a result of FASD.
While being educated in FASD at the Anishinabek Educational Institute in North Bay, Ontario RJ found that the sharing of these strategies were a helpful educational tool and that, along with founding the Facebook support group “Flying With Broken Wings” gives him a unique insight into living with Fetal Alcohol Spectrum Disorder, which he shares freely.
He is co-founder of the FASD advocacy and support group “Red Shoes Rocks” which shows that FASD is real and many people are dealing with it every day, all around the world.
RJ also speaks widely, advocating for people living on the spectrum. It is through team effort that there is more research and education being done, and getting this information out to the public is important.
RJ was Red Shoes Rock #2 Runner in our 2016 campaign –
See his progress in 4 years – WOW.
2016 WISH – That others need not experience what I and so many others have gone through because FASD is not understood; that by bringing light to the subject we can improve the chances, and the lives of so many others.
My Country: Canada
by RJ Formanek
The difference between a standard and an automatic transmission in vehicles. They both do basically the same thing, but each has to be considered, understood and operated differently. Yet you will never get cruise control with a standard transmission. However, my standard transmission brain does enable me to do some things that often lead others to expect more of me than I am actually capable of.
We call that the ‘presumption of competence’ and when people expect or even assume that we are all driving with automatic transmissions and those differences show up they can be rather extreme looking.
Expectations are not fulfilled, and that confuses the entire situation again.
I rely on my own personal support team to help me do the things that I either can’t do, or that cause me so much stress to do it’s not worth it.
One person can not really fill this role, it’s not fair to that person…but having a number of people who can ‘help out’ in certain areas can really be a huge step forward, and helps me be a better version of myself.
Our brains really are structured differently, and they operate differently.
There is no getting around that, and try as we might we can not always fulfill those expectations when placed upon us.
Learning how one’s own brain actually functions, seeing where there are problems and where there are strengths is the first step for us. We then need to try and ‘explain’ to people close to us how to best work with our brains… because as owner operators we can tell people what works, and what does not. But we need to be cognizant and proactive ourselves to ‘reach out’ to the rest of the neurotypical population.
That’s not always easy, but we are all in this together, right?
In conclusion, presumption of competence can lead to unrealistic expectations and negative emotional responses. We need to communicate effectively with our team, and together we can all move forward in this life in an interdependent fashion.
Our brains are different, but that does not have to be a bad thing,
we can be the spark that starts a whole new way of looking at things, we can change how the world sees itself, because we ARE different.
Take care of each other, the rest comes along one step at a time.
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And many believed children of problem drinkers had defects related to poor genetic stock rather than to alcohol exposure. Historically, there were seasons of questions. The unconnected pieces of fetal alcohol spectrum disorders (FASD) had existed since the dawn of alcohol abuse. And the puzzle pieces of understanding lay strewn inside closet, behind doors, on shelves and in laboratories.
March of Dimes led the fight for the health of all moms and babies in the USA. What started in the USA with President Franklin D. Roosevelt’s struggle with polio led to the creation of the National Foundation for Infantile Paralysis, better known as March of Dimes. A cure was found for Polio, and with that success, March of Dimes focused on fighting birth defects, premature birth and infant death. They initiated newborn screenings. They educated medical professionals and the public regarding best practices.
In the 1950’s, French researchers began to study alcohol and pregnancy. In fact, an unpublished thesis reported the prenatal effects of alcohol on children born to parents with alcohol use disorder (AUD), then merely referred to as alcoholic parents. Today, problem drinking that becomes severe is given the medical diagnosis in the USA of “alcohol use disorder (AUD).” AUD is a chronic relapsing brain disease characterized by compulsive alcohol use, loss of control over alcohol intake, and a negative emotional state when not using.
March of Dimes believes every baby deserves the best possible start.
Sadly, not all babies get one a start without prenatal developmental trauma.
March of Dimes changed the public awareness of birth defects in the United States. The visible effects (limb defects, congenital heart disease, malformations of the inner and outer ear, and ocular abnormalities) of the drug Thalidomide, (the late 1950s to early 1960s) used for the treatment of nausea in pregnant women was readily visible.
A more stealth prescription, diethylstilbestrol, known as DES was developed in 1938, it was for short-term use for menopause symptoms. It was not developed to give to pregnant women, which wasn’t done for several more years when it was given to pregnant women to prevent miscarriage. (See Timeline)
Clinical studies showed DES was ineffective for this purpose in the 1950’s, but the drug was continued to be prescribed. Then in the late 1960s, a rare cancer of the vagina among young women, called clear cell adenocarcinoma (CCA) began occurring. This type of cancer was linked to their exposure to DES while in the womb. In 1971, the U.S. Food and Drug Administration notified physicians that DES should not be prescribed to pregnant women. By that time, already between 5 million and 10 million pregnant women and babies had been exposed to the drug. (Read more)
In a significant study of 6,500 women (4,600 exposed and 1,900 unexposed), the researchers found that the daughters with exposure to DES while in the womb had an increased risk of 12 medical conditions, including a twofold higher risk of infertility and a fivefold increased risk of having a preterm delivery. 1
Those two highly published issues increased public awareness. In addition, women who had been exposed to DES were now at child bearing ages and unable to conceive. Many of these women adopted children with special needs. And many of these children had undiagnosed FASD.
Perhaps the time had come for people to accept the possibility alcohol also may cause issues?
Twenty-five children had distinct features related to prenatal alcohol exposure. Dr. Lemoine called this alcoholic embryopathy. Sadly, his findings were overlooked, that is until Jones and Smith contacted him, before publishing their Lancet paper. It was several years before they cited him. Was Lemoine bitter? He was an honorable man. He was grateful, the time and place was ripe and his worked had been ignored.
“Fortunately in 1973, Smith in Seattle, after reading the abstract of my work in the French Pediatric Archives, published 8 cases with the same conclusions. He wrote to me asking for my complete text. This is an amusing fact: the 127 cases of a modest pediatrician from Brittany did not create any interest, whereas 8 American cases became immediately convincing and the syndrome became rapidly known in France and in the world. Thanks go to Smith for being able to impose the existence of this reality and its dramatic consequences”. —Dr. Paul Lemoine
Dr. Christy Ulleland was interested in failure-to-thrive babies and noted that many of these babies were birthed to mothers with AUD. Curious, she reviewed delivery records and discovered more babies matched the pattern she was seeing. She brought her findings to her colleagues, Drs. David Smith and Kenneth Lyons Jones.
Christy Ulleland writes about this discovery (read full text)
Christy Ulleland
Harborview Medical Center
From October 1968 through June 1969 we observed six infants at the University of Washington’s Harborview Medical Center who had three features in common. First, Each of these infants was born undergrown for gestational age, with a birth weight below the tenth percentile, by Lubchenco’s standards. Second, their postnatal growth and development did not proceed at a normal rate. Four were admitted to the hospital in the first six months of life because of failure to thrive and did not grow there in spite of special attention given to their feeding and care. Finally, the mothers of all these infants were chronic alcoholics as defined by Keller’s. modification of the World Health Organization definition. Alcoholism is defined as a chronic behavioral disorder manifested by repeated drinking of alcoholic beverages in excess of the dietary and social uses of the community and to an extent that interferes with the drinker’s health or his social or economic function.
The observation of this triad led us to examine our experience with infants undergrown for gestational age, infants under one year of age who had been admitted to the hospital for failure to thrive, and alcoholic women who had delivered at our institution. The newborn nursery and delivery records were reviewed to identify all undergrown infants born in the 18-month period January 1, 1968, through June 30, 1969. This period included the birthdates of the six index cases. The records of infants less than one year of age hospitalized with a diagnosis of failure to thrive in the same 18-month period were also reviewed.
Obstetricians and paramedical personnel in the prenatal clinics were asked to assist in identifying mothers who were alcoholics. These personnel included social workers, public health nurses, and nutritionists who were intimately involved in the pre- and postpartum care of these patients. We asked them to identify known alcoholics who had delivered in the specified 18-month period and any women who were intoxicated when seen in the morning prenatal clinics or during morning home visits by the Public Health Nurse. (Read full report)
For further Historic reading read ABSTRACT PUBLISHED“The Offspring of Alcoholic Mothers”
And with a public already aware of birth defects, the USA was ready to listen.
In 1972, Dr. Kenneth Lyons Jones begin a 2-year fellowship in Dysmorphology at the University of Washington, under the mentorship of Dr. David W. Smith. In 1973, Jones and Smith identified a specific pattern of malformations, growth deficiencies and central nervous system defects in 10 children of alcoholic mothers. They published their findings and labelled the condition fetal alcohol syndrome (FAS).4 Similar findings were found in Germany, France and Sweden.5-7
View Dr. Kenneth Jones video on History of FASD
And the hidden continued…. “In the 1970’s alcohol was used to stop preterm labor. It was no more effective than a placebo and bed rest. I know these children and having now raised six children with FASDs, there is not denying this affected my friends,” says Ann Yurcek. (Read More)
For more information:
Our team also discovered this artcle the day after we posted this blog. It is excellent on the History of FASD. Thank you.
From New Zealand
Salmon J (2016) Diagnosing Fetal Alcohol Spectrum Disorder: Historical to Present Day Challenges. JSM Schizophr 1(1): 1004. Jenny Salmon, Centre for Research on Children & Families – Research Cluster, University of Otago, New Zealand,
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The week of September 11, 2001, I presented Fetal Alcohol in Australia along with a five-day program for foster carers and adoptive parents on living through allegations. Both issues remain vibrant and alive in our respective countries. When Sue and I met, we were just two mums who tenaciously loved our children and our communities, willing to look at all sides for the truth in preventing and understanding FASD. — Jodee Kulp
Her personal experiences in caring for a child with FASD and the struggle to find information and appropriate support services in Australia initiated a national organization. This dedicated Mum worked tirelessly, along with the support of a small dedicated group of volunteers, to have FASD recognized as a disability in Australia. Together they have advocated for the rights and interests of people living with FASD and provided information and support to individuals and families at a grassroots level.
Along with a small group of committed volunteers, they named the group “National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD)” and were incorporated in South Australia on the 30th August 1999. This was the first organization advocating for FASD in Australia. The organization was re-named NOFASD Australia in 2013 to remain current with diagnostic terminology.
Sue retired from NOFASD Australia in an official capacity in 2015 but continues to provide voluntary support to the organization in various roles. Her practice-based wisdom as the Parent & Family Support Co-ordinator ensures that NOFASD is able to develop staff, support clients and upskill those working to enhance the lives of individuals and families affected by FASD. Sue also contributes regularly to NOFASD’s social media presence, ensuring that messages about FASD and the importance of alcohol-free pregnancy reach far and wide throughout Australia and the world.
NOFASD Australia provides provide confidential telephone and email support to individuals living with FASD and their parents, carers, family members and service providers. They also provide referral information for FASD services available in each caller’s location.
NOFASD Australia delivers education and training to a wide range of audiences across Australia. The content and format of workshops is tailored according to the level of knowledge in the group and identified interests.
They also offer a Train it Forward FASD Masterclass which is delivered approximately 6 times per year in different cities. This workshop aims to encourage attendees to feel more confident in their knowledge of FASD and share resources, ideas, and knowledge with their colleagues and communities. Everybody needs to know more about FASD!
These wallet-sized cards can be given to bystanders when a child experiences a sensory overload in public. This enables parents and care-givers to enlist the support of observers by quietly explaining what is going on and asking for their cooperation, including not staring or becoming involved unless assistance is requested.
NOFASD provides a number of webinars for the community, including those targeted at health professionals, teachers, and parents and carers. NOFASD also provides a free PowerPoint presentation, which can be downloaded from their website, for anyone who wishes to inform and educate others about FASD.
These fact sheets include information for families seeking a diagnosis, information on FASD across the lifespan, and strategies for supporting children with FASD with a range of cognitive skills.
Publication
Fetal alcohol spectrum disorder: development of consensus referral criteria for specialist diagnostic assessment in Australia. Jul 2014 BMC Pediatrics 14(1):178
Authors: Rochelle E Watkins, Elizabeth J Elliott, Amanda Wilkins, Jane Latimer, Jane Halliday, James P Fitzpatrick, Raewyn C Mutch, Colleen M O’Leary, Lucinda Burns, Anne McKenzie, Heather M Jones, Janet M Payne, Heather D’Antoine, Sue Miers, Elizabeth Russell, Lorian Hayes, Maureen Carter and Carol Bower
Meet Sue’s Lovely Daughter
https://redshoesrock.com/2020/06/02/lola-meirs-australia/
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We discovered I had FAS when I was 18 years old and I am now 39.
As a child I was very impulsive, Mum would say dinner is ready and I would run off to the neighbor.
The hardest things for me to deal with are friendships and partners because they look at me and say you are so bright and so intelligent. And then I do something dumb and they think I am playing on them and they get mad and abusive. Even people who are professionals think I do things to play on them, but guess what, it is my intellectual disability and I am not even aware of what I did. I do not think before my actions, and then I think, “Oh, my gosh, I should not have done that.”
I made friends with people who treated me poorly and would lead me down the wrong path. “Come on Lo, one drink won’t hurt you.” Yes, one drink will hurt me. I was born with already too much alcohol in my life. I have struggled with alcohol since I was 18. I get pressured by people who manipulate and mentally abuse me and then I can drink so much, then I get depressed, I hurt myself and my life gets really messy. I live by myself and I get really lonely.
I have been in rehab two times and some of the work was difficult to understand. The first time I did not get it, the second time was a success, and then COVID happened. I could not see my mom and dad, I could not see my daughter, I must stay home, and my whole life changed.
When it comes to Fetal Alcohol I want the whole world to know there are many people like me and we struggle. We struggle when no one notices we are struggling and then we have to cope with the not knowing and the people thinking we know.
My favorite thing in my life is spending time with my mom, dad, and my daughter, and going camping. We go camp in the bush, we look at the stars. We camp and enjoy the bush.
Wish – that there was funding for recreational programs to keep us busy, growing stronger, sober living with safe friends.
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Here are the questions:
Two ways we are collecting stories
Red Shoes Rock