99 Days to 9/9 FASDay: Master Post

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.

our sacred breath

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.

01 JuneDay 1: 99 Days to FASDay: First Published Study Linking Prenatal Alcohol Use and Birth Defects: Dr. Paul Lemoine
02 JuneDay 2 of 99 Days to FASDay: What is FASD?
03 JuneDay 3 of 99 Days to FASDay: FASD Knows No Bounds
04 JuneDay 4 of 99 Days to FASDay: Genetic Differences
05 JuneDay 5 of 99 Days to FASDay: No Known Safe Amount of Alcohol During Pregnancy
06 JuneDay 6 of 99 Days to…

View original post 1,048 more words

CANFASD: COVID-19 TIPS FOR INDIVIDUALS WITH FASD — Northwest Peace FASD Network

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

When Going for a Walk is a Radical Act

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.

FASD: Learning with Hope

BLog_walk

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…

View original post 1,384 more words

Mates forever together inspired

Red Shoes Rock honors the FASD pioneers –
Elizabeth “Anne” Russell – Thank you!

 Courage is something that Elizabeth (Anne) Russell both has and inspires in others.

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

Elizabeth russellProfessor 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.

Her youngest son has full FAS. She has lobbied extensively in Australia on both a state and national level to raise awareness about FASD issues since 2000. She is also the  founder of the Russell Family Fetal Alcohol Disorders Association (RFFADA)

alcohol_and_pregnancy_russell

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

David Boulding – Canadian Lawyer shares“When you have worked as a lawyer in family and criminal courts, as I have for over fifteen years, you hear many stories. This story, this author,
is separated from almost all of the stories I have heard by two special human qualities: she
takes responsibility for her life, and then decides to take action herself to remedy the situation. This is indeed a story worth reading. The story contained here is not unique in the facts-as you will learn, the facts are all too depressingly repeated over and over all around the world. You will learn more about Fetal Alcohol Spectrum Disorder here than in any medical textbook-and that is part of the problem the author seeks to
remedy. The book details vital information each Australian considering having a family must have-information they will not get from doctors, parents or the media. More importantly, here is a story of mother taking responsibility for her life and her most difficult situation, and then doing something constructive to help others. The acceptance of personal responsibility and the commitment to action found in these pages makes this story so vitally applicable to each reader. FASD affects all aspects of Australian society … no one is immune.”
The Russell Family Fetal Alcohol Disorders Association (RFFADA) was formed in 2007 and is a national not-for-profit health promotion charity dedicated to ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia, and that carers and parents
are supported with a “no blame no shame” approach. The website provides links to a range of research, projects, information and support resources related to FASD.
  • Support
  • Training
  • Education
  • Research and Projects

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. 

Ann is the author of the first three books on FASD in Australia 

Red Shoes Rocks gives her a BIG SHOUT OUT and Thank You. 
(click on links or books to purchase)

alcohol_and_pregnancy_russellAlcohol and Pregnancy: A Mother’s Responsible Disturbance (2nd Edition 2018)
by Elizabeth Russell (2005, 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

Alcohol and Pregnancy: No Blame – No Shame!
b
alcohol_and_pregnancy_book_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_sStrategies for Employment Services Specialists
by Elizabeth Russell (2008)

“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

Russell Family Fetal Alcohol Disorders Association  

YOU TUBE

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/

RJ Formanek – Canada

I wish there were a fuller, deeper, truer understanding of FASD and generally accessible strategies for all to use.

Thank you to RJ Formanek for running a strong advocacy program in Red Shoes Rock FASD Aware and Flying with Broken Wings – We Love You!

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
Starfish award 2018Having 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.

2RJ 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

HIRE RJ FOR SPEAKING ENGAGEMENTS CLICK HERE

INTERESTED IN FASD – READ THIS

RJ-Speed

Are you a a standard and an automatic transmission? 

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.

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/

Ripe Time to Connect FASD Pieces

Red Shoes Rock honors the FASD pioneers –
Dr. Paul Lemoine, Dr. Christy Ulleland, Dr. David Smith – Thank you!

For over 100 years physicians had known that alcohol crossed the placenta.

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.

Over 80 years ago, March of Dimes was founded

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.

Over 70 years ago, genetics remained the conclusion in a 1946 article in The Journal of the American Medical Association.1

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?

 

1.DR-Paul-Lemoine-1

Meanwhile, in 1968, Dr. Paul Lemoine, a rural French pediatrician (1917-2006) published a study of 127 children from 69 French families.2

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

Meanwhile in 1968, another obscure pediatric resident, Christy Ulleland, in Seattle, noticed a pattern.

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”

2.DR-Paul-Lemoine-1
Nantes, France, 1981 Dr. Ann Streissguth and Dr. Paul Lemoine on left and Mme. Francsis on right

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:

  1. Hoover RN, Hyer M, Pfeiffer RM, Adam E, Bond B, Cheville AL, Colton T, Hartge P, Hatch EE, Herbst AL, Karlan BY, Kaufman R, Noller KL, Palmer JR, Robboy SJ, Saal RC, Strohsnitter W, Titus-Ernstoff L, Troisi R. Adverse Health Outcomes in Women Exposed In Utero to Diethylstibestrol. NEJM. Oct. 6, 2011. 

Our team also discovered this artcle the day after we posted this blog. It is excellent on the History of FASD. Thank you. 

From Canada
Clarke, M. E., & Gibbard, W. B. (2003). Overview of Fetal Alcohol Spectrum Disorders for Mental Health Professionals. The Canadian Child and Adolescent Psychiatry Review, 12(3), 57–63.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582751/

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,

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/

Dedicated Mums Matter – Australia

RED SHOES ROCK SHOUTS OUT TO SUE MIERS
THANK YOU!

Sue’s compassion and voice
helped many around the world.

sue-meirs-nofasd-australia-ambassador-v4The 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

NOFASD Australia was founded on the 23rd March 1999 by dynamo Mum, Sue Miers.

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.

image001(1)

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.

Some of NOFASD Australia’s current projects:

National Helpline

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.

Workshops

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!

Advice-Card-image-for-page

FASD Advice Cards for Community

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.

image006

Webinars – get the latest information from around the world

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.

image005

Parent ToolKit – a downloadable guide to help families start the assessment and diagnosis process and seek early intervention.

Fact Sheets

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

  • Fetal alcohol spectrum disorder (FASD) is known to be under-recognised in Australia. The use of standard methods to identify when to refer individuals who may have FASD for specialist assessment could help improve the identification of this disorder. The purpose of this study was to develop referral criteria for use in Australia.

Meet Sue’s Lovely Daughter
https://redshoesrock.com/2020/06/02/lola-meirs-australia/

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/

Lola Miers – Australia

1a- 2020-Campaign-Not-HIdden-Lola-Miers

Thank you, Lola Miers, from Australia for Stepping Out
with your Red Shoes Rock FASD Aware Story

I am not hidden
My story is REAL – LOLA MEIRS

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.

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at http://www.facebook.com/RedShoesRock/

I am not hidden – My story is REAL

Thank you, to all the people from around the world for Stepping Out
with your Red Shoes Rock FASD Aware Story

We are going to do this!

Here are the questions:

  1. When did you learn you had FASD (fetal alcohol spectrum disorders)?
  2. What was life like as a child?
  3. What are you good at? (your strengths)
  4. What are the hardest things for you? (your challenges)
  5. What do you want the world to know?
  6. What is your favorite thing in your life?
  7. What is your wish?

Two ways we are collecting stories

  1. Email info@redshoesrock.com to share you story – add a couple pictures you would also like to share.
  2. Complete online at: https://www.embracedmovement.org/red-shoes-stories
embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at http://www.facebook.com/RedShoesRock/

99 Ideas for FASDay Preparation

International FASDay arrives on the 9th month on the 9th hour on the 9th minute as bells ring out with a moment of silence around the world. The International Red Shoes Rock FASD Aware Alliance is a world-wide group of grassriitindividuals, communities and organizations joining together to Start the Conversation about the realities of fetal alcohol spectrum disorders.

We offer you 99 ideas to get you started in stepping out.

YOU CAN SHARE

  1. Share your Story – email or online form
  2. SHARE – SHARE – SHARE our Facebook, twitter, tumbler and Instagram
  3. LIKE – LIKE – LIKE our pages and social media please

OUTREACH

  1. Paint some Red Shoes Rock and Place hiding in the open in your neighborhood
  2.  

Get Your Friends Together and Make a Difference
in Real Lives and Real Futures!

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

embraced-redshoesrock-merged
Visit us at www.embracedmovement.org to learn more about the 90-minute documentary. Join us is sharing the Red Shoes Rock FASD Aware information at www.facebook.com/RedShoesRock/
%d bloggers like this: