What is FASD Success?

Thank you Yvonne

our sacred breath

What does success for our children with Fetal Alcohol Spectrum Disorder look like? Most often it looks like nothing to those who do not know the struggles and challenges we face and that sometimes what seems like no big deal to others, is a huge deal in our world.

The maiden turns 20 tomorrow. We’ve been together almost twelve years. She told me she is getting up at 7:20 a.m. tomorrow because that’s what time she was born. I told her I wasn’t present at her birth 20 years ago, but I’ll be up with her tomorrow to help her celebrate her 20th.

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I thought in honour of her birthday, I’d share a real success story – on so many levels.

Last week she went to a week long day camp for adults with FASD. She has had very little success at “special needs” camps – because they don’t get…

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NOFAS

Organizing and creating a collaborative unified voice of FASD prevention and
support
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives: NOFAS has successfully organized 41 national and international affiliates. NOFAS serves as a liaison to all federal agencies that address FASD, FASD researchers and has partnerships with key professional groups such as the American College of Obstetrics and Gynecology (ACOG) and American Academy of Pediatrics (AAP). Creating an environment of collaboration, communication and unity results in successful FASD prevention, legislation, and support for individuals and their families living with FASD.
Materials & Methods: NOFAS invited grassroots FASD groups across the U.S. join them to create change and awareness of FASD. The NOFAS affiliates communicate monthly and meet annually for FASD Hill Day and the NOFAS Affiliate Summit.
Results: Successes include securing legislation and appropriations, formation and participation of FASD task forces, partnering and sharing of materials and resources, fund raising, and collaborative media events. All share a common goal: to prevent FASD. Creating an inclusive, open system strengthened both NOFAS and their affiliates.
Conclusion: NOFAS and their 41 affiliates continue to evolve, grow and change. NOFAS affiliates are a creative, enthusiastic group that have conducted research, facilitated public awareness, and work together to monitor the government agencies that address FASD and to mobilize policy makers, professional groups, and systems of care. As Aesop taught us, “United we stand, divided we fall”.
The U.S. National Organization on Fetal Alcohol Syndrome (NOFAS): 25 years
Kathleen Tavenner Mitchell 
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives: NOFAS was the pioneer in FAS and remains the U.S. national organization focused on FAS. NOFAS has orchestrated every hearing and briefing held on FASD. NOFAS serves as a liaison to all federal agencies that address FASD, FASD researchers, families living with FASD and has partnerships with key professional groups.
Materials & Methods: There has been much progress in the U.S. NOFAS has been involved (or aware) of all U.S. FASD activities for 25 years and has a timeline of past and current FASD activities, media, awareness campaigns, legislation, research, curriculum, parent groups, intervention and promising models for individuals with FASD, and outreach to birth mothers.
Results: Successes in the U.S. include 4 evidence based intervention models, the American Academy of Pediatrics has produced an FASD Toolkit, the Centers for Disease Control is prioritizing getting screening for alcohol a standard practice of care in primary health, FASD is now listed in the DSM, and the American Bar Association passed an FASD Resolution. Current problems in the legal system include recent laws that will incarcerate women for drinking.
Conclusion: The U.S. is making great strides in community and professional advocacy, but has a long way to go in addressing the stigma, blaming, and the over-simplification of FASD prevention.
Lessons learned from a cohort of birth mothers to children with FASD: The NOFAS
Circle of Hope (COH)
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives:
The Circle of Hope (COH) is a peer mentoring program designed to support birth
mothers. Women that have used alcohol or other drugs while pregnant are likely to drink in their
next pregnancy if they are not educated or provided support. Membership has expanded to over
600 members and includes state, agency, and international COH affiliations. Successes include the
peer mentorship, intervention and referral to treatment, the Women in Recovery Summits, and the
speaker’s bureau. In 2012 COH members were surveyed and 92 women responded.
Materials & methods:
The 32 question survey sought to capture a factual profile of the
characteristics of women that have drank while pregnant. Respondents included women from
America, Europe, Canada and Australia.
Results:
The confidential survey provided an opportunity to collect an honest report of alcohol and
other exposures from a cohort of women that are viewed as being difficult to obtain information
from. Women reported on their beliefs, behaviors and lifestyles and birth outcomes.
Conclusion:
Understanding why women drink while pregnant is an important first step in reducing
the stigma and developing prevention messages. Their stories are important in developing models of
intervention and policy. The bond between birth mothers has global reach. Countries from across the
seas can be connected to work together to support women to prevent FASD.
The NOFAS K-12 FASD prevention curriculum: an evidence-based model for
educating school age populations on FASD
Kathleen Tavenner Mitchell
National Organization on Fetal Alcohol Syndrome (NOFAS), Washington, DC, USA
Objectives:
According to the U.S. Surgeon General early education about healthy lifestyle choices
and behaviors is the most effective method to address major health concerns. The NOFAS
curriculum is designed to engage students and raise awareness about drinking during pregnancy.
The emphasis of the curriculum is on alcohol, addiction to alcohol and how alcohol can effect fetal
development. The lessons include the skills of making decisions, setting goals, and carrying out action
plans to meet those goals.
Materials and methods:
The curriculum includes four modules (K-2, 3-5, 6-8, and 9-12) and each
includes lesson plans and educational materials. Methodologies include a DVD, FASD Brain model,
youth book, and puzzles.
Results:
The curriculum is easily integrated into several different units in a standard health
curriculum. For instance, in the U.S., an average high school health curriculum is broken down into
several units including,
Alcohol Tobacco and Drugs, Reproduction and Pregnancy, Health Promotion and Disease
Prevention
covering a wide range of topics. A variety of instructional strategies and methods are
essential in addressing the many needs and interests of students.
Conclusions:
The curriculum has been disseminated across the U.S. and worldwide. The evaluations
reported that both teachers and students enjoyed the methodologies and both increased awareness
about drinking and pregnancy after receiving the lesson.

Free Russian and Ukrainian Translations Best I Can Be Living with FASD by Liz Kulp

We are all in this together and it will take a whole world to understand!

RedShoesRock-Conversation
Yes you can right click and use this artwork FREE or you can double click to buy vehicle window clings

The Kulp family has graciously allowed the Best I Can Be: Living With Fetal Alcohol to be translated into Russian and Ukrainian. The translations were sponsored by  UKRAINE WORKS.

Mom’s Choice Recipient, Liz Kulp, as a young teen with Fetal Alcohol challenged the world to peer inside her life and brain. Through her own writings the reader is taken on a life changing journey that will impact their thinking about how to help and understand children with brain damage due to Fetal Alcohol.

“Mom, I want to write a book anout what it’s like to have FASD (fetal alcohol spectrum disorders) I think people need to know”

 … and so began Liz’s and my journey in writing The Best I Can Be – Living with Fetal Alcohol Syndrome. Liz was right, it was a story that needed to be told. Fetal Alcohol Exposure is a leading cause of cognitive challenges and intellectual disability in the western world. It is estimated that one out of 10,000* children born each year in the United States as FAS (Fetal Alcohol Syndrome with facial features) and one out of 100** have FASD (without facial features).

Research and experience has proven one label is not better or worse than the other. Tens of thousands of newborn US children each year will have to learn to cope with this disability. It is time to come out of denial – alcohol consumption during pregnancy is not safe.

Let Liz take you on our journey – it is a journey of hope, of dedication and of perseverance. Thank you Liz for your courage to share your story. The Best I Can Be Living with Fetal Alcohol Spectrum Disorders (Available at Amazon) by Liz Kulp and Jodee Kulp is a recipient of the prestigious Mom’s Choice Award for Best Young Contributing Author.

FREE UKRAINIAN TRANSLATIONS

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FREE UKRAINIAN BOOK Best I Can Be Living with FASD by Liz Kulp
Download FREE UKRAINIAN BOOK Best I Can Be Living with FASD by Liz Kulp

FREE RUSSIAN TRANSLATIONS

FASD Characteristic Chart
russian_Best I Can Be 90

FREE RUSSIAN translation of The Best I Can Be Living with Fetal Alcohol
Download FREE RUSSIAN translation of The Best I Can Be Living with Fetal Alcohol by Liz Kulp

FASD Grows Up!

RED SHOES ROCK THANKS JUDITH KLEINFELD
FOR FOCUSING ON WHAT CAN GO RIGHT!

A compendium from parents and professionals of practical tools and strategies that can help alcohol-affected individuals and their families lead happier, more productive lives.

judithkleinfeld.jpgJudith Kleinfeld is founder and was the director of the Northern Studies program at the University of Alaska Fairbanks.

She has published two early books with the University of Alaska Press on fetal alcohol spectrum disorder (referred historically as FAS/FAE)

Fantastic Antone Succeeds, with Siobhan Wescott, (1993) and Fantastic Antone Grows Up (2000) with Siobhan Wescott and Barbara Morse.

Fantastic Antone Grows Up is a field guide to life with an adolescent or young adult with fetal alcohol syndrome/effects.

FantasticAntoneUnder the best of circumstances, adolescence is a trying time for young people and their families.

The budding adult seeks independence and autonomy while the resistant child within longs for protection and structure; questions about sexuality and work, social commitments, and solitary accomplishments loom large and can create a family battlefield.

For the challenged and the challenging young people with FASD, circumstances as they begin maturing can be even more difficult. Without minimizing the seriousness of FASD and the first priority prevention, Fantastic Antone Succeeds provides practical tools and strategies that can help alcohol-affected individuals and their families lead happier, more productive lives.

“This book provides a timely and important counterpoint to the gloom and doom that predominates in so many professional–and virtually all popular–sources that deal with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). . . . [It] gives realistic hope to those who have for too long been given virtually no encouragement in seeking better lives for such children.” (Addiction)

“This book is a gift to the many caring people who deserve the wisdom that is offered here.” (Winds of Change)

“Commonly as part of our treatment recommendations after we have evaluated a child, we include a recommendation for the family or caregivers to read Fantastic Antone Succeeds.” (Reader Comments)

“Fantastic Antone Succeeds is the first major step forward in helping parents and teachers to help the unfortunate victims of alcohol exposure in utero.” (Dr. Sterling Clarren, Director, Seattle Fetal Alcohol Program)

Fantastic AntoneIn this sequel to Fantastic Antone Succeeds young people with FASD and their caregivers report on their experiences coping with the problems of adolescence and young adulthood. Again the editors and authors have concentrated on the wisdom of practice as they candidly convey which techniques worked and which did not during the difficult passages of the teenage years and beyond.

The twenty-one chapters are grouped according to theme.

  1. Section one discusses the meaning of success for adolescents and adults with FAS/E, and indeed the need to define success in new ways.
  2. Section two discusses strategies that work in areas such as counseling, education, sexuality, trouble with the law, and independent living.
  3. Section three covers what families need from the community, including innovative programs that help individuals with FASD and how to get a diagnosis at adolescence.

The book also contains lists of important resources, organizations to contact, and helpful internet sites.

More has been learned about how alcohol poisoning in the womb alters brain function and physical development, but science is far from providing the answers that affected young people and their caregivers need about everyday life with FAS/E. This is why voices of experience are so important–with their practical messages of coping, caring, loving, weeping, laughing, and–more often than might be expected–succeeding.

A fun sidenote:
Fairbanks Daily News has 975 articles containing information and news on Fetal Alcohol.

Books:

  • 2012. The Frontier Romance University of Alaska Press 2003. Go For It: Finding Your Own Frontier Epicenter Press
  • 2002. The Frontier Frame-of-Mind . Epicenter Press
  • 2002. Nobody’s Perfect: The Kleinfeld Columns on the Psychology of Everyday Life. Vanessa Press
  • 2000. Fantastic Antone Grows Up: Educating Adolescents and Adults with Fetal Alcohol Syndrome. University of Alaska Press
  • 1994. Gender Tales: Tensions in the Schools. New York: St. Martins Press. (with Sue Yerian).
  • 1993. Fantastic Antone Succeeds: Experiences in Educating Children with Fetal Alcohol Syndrome. (1993). (with Siobhan Wescott)

Journal articles:

  • 2001. Using the Internet to Expose Junk Science: The MIT Study on the Status of Women. Society.
  • Research featured in The New York Times, Wall Street Journal, Psychology Today, Chronicle of Higher Education, Education Week, U.S. News and World Report, Insight., The Atlantic Monthly and in columns by John Leo and Mona Charen.

Creativity connects us to one another

RED SHOES ROCK THANKS ANTONIA RATHBUN
YOUR CREATIVITY OPENED NEW PATHWAY OF UNDERSTANDING.
THANK YOU!

Art Therapy gave me the privilege of sharing the power of art to make story visible, which can change the life of a child, their family, community, and a entire culture. 

Art is not just a thing, it is a Way.
The picture above is one of Antonia’s paintings.

AntoniaLindsayAntonia (Rathbun) Lindsay empowers families. Not only does she see the forest, she can delve into the trees and their branches and their leaves and buds and rings. She embraces the bark and soothes the rough edges of life. — Jodee Kulp

There is never shaming or blaming and any family lucky enough to have had the experience to work with her will leave with real tools to use in their life.  She digs in to find creative solutions to family problems that are based both on research and many, many years of experience. Her solutions work! She has provided direct and online clinical and community education in art therapy and neurobehavioral intervention for children recovering from meth, alcohol & other neurotoxin exposures, trauma, autism spectrum differences & communication diversities.

She is a Mental Health/Disabilities Consultant; Master Art Therapist; Child & Family Therapist with neurotoxin exposures (FASD, Meth) and Autistic Spectrum Disorders in children.

Up for the challenge, during her career she provided individual, family & group therapy, dyadic therapy, and case consultation for psychiatric, FAS & other drug effects, Communication Disorders, Autistic Spectrum Disorders and developmental, genetic and other medical special needs and ethnic/cultural diversity issues.

This is the introduction to "A Conversation with Becca", a video interview I had with  Becca McConnell, a young adult woman with FASD.  She discussed symptoms and solutions which help her and her family, including key concepts from the "Parenting Your Porcupine" Curriculum which was developed under a federal research & demonstration grant on treating adoptive families raising children with FASD, through the US government's Adminstration on Children, Youth & Families at Childrens Center in Washington from 1999-2003. 

Her goal is for children & communities to use art as a way to contribute their unique & diverse perspectives for a sustainable & creative world. Art is not just a thing: it is a Way.

If I ever needed a therapist I would seek out Antonia. She is so insightful. She is the best!” — Deb Evensen

The best strategies are developed WITH people, not AT them.

Antonia has years and years and more years of professional experience as a Registered Art Therapist, Child & Family Therapist, & Minority/DD Specialist delivering promising practices, quality clinical services, community education & intervention with foster, adoptive, kinship, guardianship & birth families of young children with trauma, alcohol, meth & other drug exposures, Autistic Spectrum & other developmental conditions, Communication Disorders, Deaf/HH and Talented & Giftedness.

Now that is a mouthful. And as you can see she in unafraid to walk in some pretty heavy stuff. Don’t worry—there is more!

“Art is not just a thing, it is a Way. It is a visual language of the human heart, expressed by people of all ages, cultures and conditions. Creativity is the common denominator connecting us to one another, and the natural world of other beings we share life with. Art heals, because it communicates our experiences and expands imagination of what is possible.

She has developed programs & training protocols for clinicians and providers at the regional and national levels in the US & Canada, including SAMHSA FAS Centers for Excellence & British Columbia’s Ministry of Education, among others. 

She developed SNAP (Special Needs Adoption Program), the US’s first research & demonstration program for special needs adoptive & kinship families with FAS & other alcohol & drug-related disorders.

That was followed by the COACHES (Calming Overaroused Children for Healthy Early Starts) program for methamphetamine endangered children ages 2-6, which has been incorporated into a current multisite SAMHSA study involving Children Affected by Methamphetamine in collaboration with Family Treatment Drug Court in SW Washington.

Her work was published

  • In the book “Fantastic Antone Succeeds”, the first solutions-focused book on how to support children and families living with FASD,
  • Hazelden Foundation’s “FAS: Stories of Help & Hope”, and the
  • British Columbian Ministry of Education’s Guide to Educating Students with FASD, among other media.

She founded the “StarChild Quilt Project for FAS/FAE”, a solutions oriented art therapy intervention for community empowerment which spread through 22 states in the US and 4 provinces in Canada serving indigenous nations in narrative intervention on intergenerational trauma and recovery.

She served as a consultant on mental health/developmental disabilities, minority & cultural diversities & creative therapies.

Antonia has been in recovery for 30 years, is active in the Deaf and Hearing communities and is lives with Meniere’s Disease which Deafened her in 2009. Her lovely artwork can be discovered and in some cases purchased at the following link:

  • Antonia-Lindsey-Art.squarespace.com because she paints on! Antonia is selling her work mostly in the Netherlands, where she spends quite a bit of time in the Dutch Deaf community.

 

 

 

 

Early Diagnosis Changes the Game

RED SHOES ROCK THANKS BARB WYBRECHT
your family changed the lives of many families for the better!

“This family is one of our giants!” And FROM THIS FAMILY we have evolved. Thank you!” — Red Shoes Rock

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“We are… sitting on the shoulders of giants. We see more, and things that are more distant, than they did, not because our sight is superior or because we are taller than they, but because they raise us up, and by their great stature add to ours.” — RJ Formanek quotes from the 12th century, attributed to Bernard of Chartres. Author John of Salisbury used a version of the phrase in a treatise on logic called Metalogicon, written in Latin in 1159. Its most familiar expression in English is by Isaac Newton in 1675: “If I have seen further it is by standing on the shoulders of Giants.

Barbara M. Wybrecht, is a graduate of the University of Michigan School of Nursing, with post-graduate studies in the School of Public Health. She is one of four recipients of the 2009 Excellence Award given by the National Association of Fetal Alcohol Syndrome (NOFASD).

In 1973, the year FAS was identified in the United States, Barbara and her husband, Ted adopted their son Rob, the first infant in Michigan to be diagnosed at birth with the syndrome. As a result of this event, and the learning that came from it, Barbara professional focus shifted to full-time work in the prevention of FASDs. Since that time she has presented her message over 900 times.

In addition, to this couples contribution to the world of FASD, this wee baby was blessed with an incredible and loving family; his father was an educator/school principal and his mother a skilled nurse. They had just skills needed to help this little one.

“Barb and Ted Wybrecht were an amazing team. Not only are they off-the-charts, great parents, but as a married couple, they have one of the most beautiful relationships I have ever seen. When you are lucky enough to get advice from them, pay attention.” — Deb Evensen

“My oldest son and I attended one of Barb’s trainings to help my son understand his little brothers and sisters. Midpoint in the day, he looked and me and said, ‘I have fetal alcohol, too.’ Barb you gave my son acceptance of himself, his disability and the courage to move into adult life. Our family thanks you. “ — Ann Yurcek

c88a3-18167423-9052034In 1992, Barbara coordinated the first conference in Michigan for parents and children with FASD, and successive national conferences in 1993, 1994, 1995 and 1997 for parents and professionals.

“Thankfully, FasLink connected Barbara with our family in 1997. Barb and her husband, Ted, became trail guides to help me live, love and laugh with our daughter. Barbara was always forthright and honest in her discussion. She challenged me. She made me think and then think again. She thought with me, adding her years of experience. To you, Barbara, I am eternally grateful,” – Jodee Kulp

In 2002, Barbara created “Living and Learning with Fetal Alcohol Syndrome,” a summer conference to help individuals with an Fetal Alcohol Syndrome and Alcohol Related Neurodevelopment Disorders to understand their disability and find better ways to live with it. Teens and adults with FASD made up over 50 percent of the planning committee. She also coordinated a parent-mentoring program for teens, and women in treatment for substance abuse.

“It was a time when all of us came together, we shared what we learned. We leaned on each other. We became a world of friends from many countries and in many languages.” Shared Barbara. “All of our lives changed as we raised our children. Our children became our teachers.”

These camps were significant in that they brought together individuals with FASD, parents and caregivers and professionals in a relaxed camp setting. By taking down the barriers of distance and creating conversation opportunities, many friendships that had been formed only on the Internet through FASlink and Forums were made forever.

Having a diagnosis at birth was extremely helpful to both their son and significantly helped in their ability to parent him.

Although there were no conferences or books or videos on FAS in 1973, having the diagnosis helped his parents think and parent differently. And it was their thinking and parenting that blazed many trails for others to follow, tiny step-by tiny step. Since 1973, Barb has been instrumental in the development of diagnostic clinics and support groups that have been beneficial to those affected by FASD throughout Michigan and on a national level.

Barbara has continued to present workshops and she is among the leading authorities in Michigan and nationally on FASD. 

Most workshops are day long, are multidisciplinary and geared to those new to the world of FASD and related issues. Others are specifically designed for teachers, nurses, law enforcement professionals, mental health professionals, child welfare workers and parents themselves.
Specialized workshops include those on:

  • FASD and Sexuality
  • FASD and the Law
  • FASD across the Lifespan – Strategies and Interventions.

MCFARSMCFARES (Michigan Coalition for Fetal Alcohol Resources, Education, and Support) came about as a result of a call to action by Barb Wybrecht in the spring of 2003

Agencies and families came together to develop a plan to address the issue of Fetal Alcohol Spectrum Disorders in Macomb County. Since 2003, MCFARES has succeeded in gaining local, state and national attention by providing training, support, information, and services for anyone impacted by FASD.
MCFARES has an incredible website filled with links you need to know about. They have truly done the work of sleuthing out the details well.

Check out Michigan FASD Task Force
Barb’s determination and perseverance were an example to her son who followed in her foot-steps as an influential advocate for FAS in his own right.

“Her son, who I respect immensely,” says Jodee Kulp “really became part of the solution to the FASD puzzle. His contributions need noting.”

  • He has been involved in the areas of prevention as well as intervention. His bumper stickers patterned after bus signs in Seattle have found their way to Capetown, South Africa, and Paris, France as well as all 50 states.
  • He was featured on the video Students Like Me”.
  • He was on a national committee, NAG (National Advocacy Group) for Justice, to help individuals with disabilities understand their rights in the criminal justice system. He and his father wrote a manual to help persons with FASD navigate the Justice System.
  • He has trained peers, based on their project, “The Right Rules”.
  • He was the SAFA (Self-Advocates with FASD in Action) Project Coordinator
  • He assisted in planning the first ever conference by and for Individuals with an FASD. He was also a presenter.
  • He has In May he spoke at the FASD Center for Excellence, Building State Systems conference
  • He attended his first steering committee meeting for the FASD Center for Excellence, under SAMHSA.
  • He is the first person with an FASD to be on a national committee for FASD.
  • And he has recently married and moved into living his life.

“It was the most beautiful wedding I have ever attended,” shares Deb Evensen.

Red Shoes Rock says Thank You to this family of dynamos!

Couple gives a lifetime to create change

RED SHOES ROCK IS HONORED TO PRESENT
STERLING AND SANDRA CLARREN. THANK YOU

Sterling and Sandra Clarren have given a lifetime together in making a difference for understanding and helping persons with FASD. They are a team!

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Dr. Sterling K. Clarren is one of the world’s leading researchers into Fetal Alcohol Spectrum Disorder. Dr. Sandra G. Bernstein Clarren worked in the field of special education for over 40 years. Together they had what it takes to help make a difference for individuals with FASD and their families and the professionals who work with them.

Dr. Clarren has studied FASD since 1975 and helped to establish the original fetal alcohol definitions. He was one of the very first clinicians to recognize that alcohol exposure during pregnancy caused neurological damage. Within nine years of the Washington discovery, animal studies, including non-human monkey studies carried out at the University of Washington Primate Center by Dr. Sterling Clarren, had confirmed that alcohol was a teratogen. By 1978, 245 cases of Fetal Syndrome had been reported by medical researchers, and the syndrome began to be described as the most frequent known cause of intellectual disabilities (then referred to as mental retardation).

Sterling was instrumental in developing the field of FASD from its infancy. He has been a world leader in research on this issue. He has dedicated his life to understanding the complexities of FASD and advancing the science, using that evidence to improve diagnosis, develop interventions, increase awareness and change outcomes for those living with this disability. 

Today we meet Sterling K. Clarren, the man who was willing to ask the questions to discover new answers. 

One question that may seem simple, was why do women continue to drink while they are pregnant?

Almost twenty years ago Sterling Clarren decided to investigate this. And what he found was startling. About half of the 80 mothers his team looked at had FASD themselves. In addition, many of them had suffered extremely high rates of physical and sexual abuse. They often had mental illnesses and were isolated from friends and families.

“The stories these women told the interviewers were so awful that the interviewers needed psychiatric support at the end of the study for secondary post-traumatic stress,” said Clarren, he champions mentorships for mothers programs. 

FASD AND BRAIN FUNCTION

Dr. Clarren shares in his Keynote from Yukon 2002 Prairie Northern Conference on Fetal Alcohol Syndrome

My colleague and I had an idea in 1995 that we would actually go and ask people about FAS and find out who are these moms. Why aren’t they listening to the warning labels? What’s different? Why isn’t this rational? How is this possible?

And we obtained funding from the Centres for Disease Control and we used our FAS Clinic as a tool for this research. We said that every time we make a diagnosis of FAS there is a mom out there who has a child with FAS. We would just go and ask her what this is all about and why wasn’t that already in the literature?

Because what we have found out as clinics have started up all over the country is that mothers with children with FAS aren’t raising them!

It’s becoming an actual experience in the US and Canada that only about 10% of birth mothers with children with FAS have them in their care.

He has written broadly on the topic of fetal alcohol.

He wrote the first article on the neuropathology of FAS, and developed the first non-human primate model for studying dose-response. 

People have misunderstood the next word which we are responsible for spinning out. In our monkey model in the trial, the only time you had that kind of anomaly was with exposure to alcohol on the 18th day of pregnancy which in humans would have been the 20th day. On the 20th day you don’t even have a brain nevertheless that’s what we found.

In the mouse model you only get this facial anomaly in the mouse with exposure at that same time period. So there is something that happens very specifically that affects these cells. Well if you don’t have the lip and philtrum anomaly you will not get a diagnosis of FAS.

Therefore if it’s true that in humans this only occurs on the 18th day, if your mother doesn’t drink during the 18th day of pregnancy then you lose your chance of getting a diagnosis of FAS. Does that explain why so many more kids with alcohol related brain damage are out there than have FAS? Yes! And that’s what makes it really confusing that the people with the face always have brain damage but the people without the face MAY have brain damage.

So that face is leading us to brain and it’s the brain that I want to speak about at the end because this is where the rubber hits the ground because what FAS is all about is brain damage. In the Id going back to Goethe, we are a helping society. We do reach out to children with brain damage.

You all come from systems which are dedicated to helping children with special needs. Why is it so hard to help this group? What is the missing piece? If we understand the missing piece we ought to be able to help them better. 

SETTING THE STAGE FOR CHANGE

The full keynote is worth a quality read. and remember it was spoken out in 2002!

Minimal Brain Damage was a term that was coined in the 1940’s for kids who had problems across all of these domains. Pretty interesting?

What happened to the term “Minimal Brain Damage”? There was no agreement among physicians about how to make a diagnosis. Some people said you needed to do a work up and other people said they could do it in ten minutes talking to the mother and everybody said it was too expensive, and the problem was that in ten years no one knew what it was because everyone made the diagnosis differently. Sound familiar?

Dr. Clarren received his BA from Yale University and his MD from the University of Minnesota. His post-graduate training in pediatrics and fellowship training in neuroembryology, teratology, and dysmorphology were all done at the University of Washington. 

He has testified about FASD before the US Congress and Washington State Legislature. He has published over 100 research articles and has received research funding from the National Institute on Alcohol Abuse and Alcoholism, the Centers for Disease Control, the Glaser Foundation, and the March of Dimes.

They say a great woman makes the man…. well that may or may not be true but it is true that Sterling’s life partner is an incredible woman and he is definitely blessed.

SandyClarrenDr. Sandra G. Bernstein Clarren worked in the field of special education for over 40 years. Initially she has worked as a special education resource teacher and diagnostician in the United States and England. After receiving her doctorate from the University of Washington, she worked as a school psychologist in hospital and school settings and at the Fetal Alcohol Syndrome Diagnostic and Prevention Network at the University of Washington.

Sandra G. Bernstein Clarren is the principal writer for the Alberta, Canada, Teaching Students with Fetal Alcohol Spectrum Disorders. This is a significant work for all educators to read and is offered as a free download

Excerpt from page 12, Teaching Students with Fetal Alcohol Spectrum Disorders

ED491497-1Children with FASD have difficulty processing information. If you give them a list of things to do and walk away from them, only one of the items may get done based their short term memory. Not only is processing all of it difficult but they cannot remember everything you told them to do. Some children work best of you have pictures showing the order to do things in on the wall. For example, a picture of someone getting dressed when getting up, then brushing their hair, eating breakfast, then brushing their teeth can help. They often have trouble with time schedules, such as only having a certain amount of time to do something. Planning and organization is also a problem children sometimes have difficulty with. A child with FASD who tries to clean and organize their bedroom might clean one side by putting everything on the other side, and when they get to the other side of the room they just put everything back over to the other side of the room. It is a never ending circle sometimes and then they just get frustrated and never finish what they start.  Children with FASD also have poor judgment skills. Most children would know that something is not right or okay to do, but a child with FASD may not see a problem with doing what they are doing. They may also have speech and language delays; for example, they may not fully understand what someone is telling them or they may not be able to get their point across regarding what they need and want. They also have a lower IQ than the average child, but some of the children with FASD do score in the higher range (Sandra G. Bernstein Clarren 2004 pg. 12)

She is a trainer, researcher, presenter, writer and diagnostician in the field of FASD and an educational psychologist in private practice.

Sandra acknowledges individuals with FASD, their families and her colleagues who have been her teachers in learning about the strengths and needs of this special group of children. She also thanks her husband, Sterling Clarren, MD, for reviewing sections of the text related to medical and research issues and discussing many issues related to individuals with her in the development of this project. 

Writing that has changed history

Sterling Clarren Papers

  • Clarke, MP, Tough SC, Hicks M, Cook J, Foulkes E, Clarren SK. (2005). “Attitudes and approaches of Canadian providers to preconception counseling and the prevention of fetal alcohol spectrum disorders.” Journal of FAS International.
  • Clarke, MP, Tough SC, Hicks M, Cook J, Foulkes E, Clarren SK. (2005). “Approaches of Canadian providers the diagnosis of fetal alcohol spectrum disorders.” Journal of FAS International.
  • Astley, SJ, Stachowiak J, Clarren SK, Clausen C. (2002). “Application of the fetal alcohol syndrome facial photographic screening tool in a foster care population.” J. Pediatrics, 141:712-17.
  • Clarren, SK, Randels SP, Sanderson M, Fineman RM. (2001). “Screening for Fetal Alcohol Syndrome in primary schools — a feasibility study.” Teratology, 63:3-10.
  • Miller, RI, Clarren SK. (2000). “Long term developmental outcomes in patients with deformational plagiocephaly.” Pediatrics, 105:417(e26).

Sterling Clarren Papers books and chapters

  • Clarren, SK. (2004) “Alcohol teratogenesis and fetal alcohol syndrome.” In L. Osborn, T. DeWitt, L. First. (eds.). Comprehensive Pediatrics. St. Louis : Harcourt Press, in press.
  • Clarren SK. (2003) “Fetal alcohol syndrome & fetal alcohol spectrum disorders.” In: M.L. Wolrich. (ed.). Disorders of Development & Learning. Hamilton, Ontario : BC Decker.
  • Clarren SK, Astley SJ. (2001) “Fetal Alcohol Syndrome”. In: S.B. Cassidy and J. Allanson J. (eds.). Clinical Management of Common Genetic Syndromes. New York : Wiley and Sons.
  • Clarren, SK. (2000) “Attention deficit hyperactivity disorder in the context of alcohol exposure in utero”. In: P. Accardo, T.A. Blondis, B. Whitman, M.A. Stein. (eds.). Attention Deficits and Hyperactivity in Children and Adults, 2nd Edition. New York : Marcel Dekker, Inc.
  • Astley SJ, Clarren SK. (1999) Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions: The 4-Digit Diagnostic Code. 2nd Edition University of Washington Press, Seattle, Washington.
  • Astley, S.J., Bailey, D., Talbot, T., & Clarren, S.K. (1998). Primary prevention of FAS:Targeting women at high risk through the FAS Diagnostic and Prevention Net-work. Alcoholism: Clinical and Experimental Research, 22, 104A.
  • Clarren, S.K., & Astley, S.J. (1998). Identification of children with fetal alcohol syndrome and opportunity for referral of their mothers for primary prevention. Morbidity Mortality Weekly Report, 47, 861-864.
  • Astley, S.J. & Clarren, S.K. (1997). Diagnostic guide for fetal alcohol syndrome and related conditions. Seattle: University of Washington Press.
  • Clarren SGB, Shurtleff H, Unis A, Astley SJ, Clarren SK. (1994) Comprehensive educational, psychologic, and psychiatric profiles of children with fetal alcohol syndrome. Alcoholism: Clinical and Experimental Research;18(2):502.
  • Streissguth AP, Aase JM, Clarren SK, Randels SP, LaDue RA, Smith DF. (1991) Fetal Alcohol Syndrome in adolescents and adults. JAMA-Journal of the American Medical Association; 265(15):1961-1967.
  • Clarren SK, Smith DW. (1978) The fetal alcohol syndrome. New England Journal of Medicine 1978;298(19):1063-1067.

Sandra G. Bernstein Clarren

  • Clarren SGB, Shurtleff H, Unis A, Astley SJ, Clarren SK. (1994) Comprehensive educational, psychologic, and psychiatric profiles of children with fetal alcohol syndrome. Alcoholism: Clinical and Experimental Research;18(2):502.

Who proved alcohol is a teratagen?

Red Shoes Rock honors the FASD pioneer – Dr. Kathleen K. Sulik – Thank you!

The FASD community is grateful that Kathleen K. Sulik, Ph.D. is a scientist who studies birth defects.

Her discipline is called teratology or developmental toxicology. Much of her research has involved studying the various types of birth defects that result from exposure of an embryo to alcohol at very specific times during development.

Suliklabfigure1Dr. Sulik designed experiments to demonstrate that alcohol can cause major birth defects and the brain damage as early as the first three weeks of fetal development.

One of the major findings from her laboratory’s studies is that alcohol can cause permanent brain damage if exposure occurs at very early stages of embryonic development — stages that occur prior to the time that most women would even realize that they are pregnant.

Dr. Sulik began her career with plans of becoming a medical illustrator, but shifted her dream in college from art into biology. Her Ph.D. is in Anatomy and the FASD community is grateful. Her mentors for her dissertation research were clinical geneticists and she gained knowledge regardingt human birth defects. After completing her degree, she went to the University of North Carolina in Chapel Hill as a postdoctoral fellow. During her fellowship she began to use scanning electron microscopy to examine early mouse embryos. This technique provides 3-D like views and the opportunity to readily visualize the complex structural changes that occur during development.

Sulik-MouseA large dose of alcohol given to a pregnant mouse produced severe abnormalities in the developing fetus (bottom), according to doctors at the University of North Carolina studying effects of alcohol in early pregnancy. Compared with a normal fetus (top), the one exposed to alcohol suffered eye damage, a stunted brain, and facial deformities similar to human babies with FAS, particularly those affected during the first trimester, when bones and organs are forming. Blood-alcohol levels reached during the experiment approximate those that could occur in a woman of average size if she drank a quart of vodka within a 24-hour period.

For more information of her work or to review a collection of images assembled as an embryology tutorial that is available at www.med.unc.edu/embryo_images. Images such as these have proven invaluable for the teaching she has enjoyed during her career as Professor of Cell and Developmental Biology Member, Bowles Center for Alcohol Studies University of North Carolina School of Medicine. Published and co-published by Kathy.

Throughout Kathy’s career her research continued to employ techniques with significant visual component, including high-resolution magnetic resonance imaging (MRI). MRI allows appreciation of a spectrum of defects that are present in fetal mice whose mothers had been given alcohol.

Dr. Sulik’s work was critical in proving that alcohol is a teratogen.
  • Her work demonstrated the stage-specific effects of early alcohol exposure.
  • She influenced FASD public policy, and played a large role in FASD prevention and education.
  • She contributed significantly to our knowledge of FASD genetics and mechanisms.

Dr. Sulik and Dr. Susan Rich co-produced the documentary, funded by the CDC, “Dispelling Myths about Alcohol Related Birth Defects”. Dr. Rich co-authored the action paper that persuaded the American Psychiatric Association to include ND-PAE in the DSM-IV TR and in the current edition DSM-5 it is more frequently referenced by medical professionals.

Full Text Available for download

The contributions of Dr. Kathleen K. Sulik to fetal alcohol spectrum disorders research and prevention

Delving into the History of FASD

 

Significance of Study of the History of FASD

For many years, it has been assumed that Fetal Alcohol Syndrome is a “new” malady. 

Although the etiology of the disorder was first mentioned in 1968 paper by Dr. Paul Lemoine, it does not mean that the symptoms were not recognized years if not centuries before.  Although not each citation is a study in the earlier centuries, it is evident that these observations detected a connection between drinking alcohol and the unsuccessful outcomes for the resultant offspring by several observers.  As scientific procedures were applied in the 20th Century, notes and case studies seem to more clearly reflect an obvious pattern of behavior that might indicate that these modern researchers were observing children with prenatal alcohol exposure.  And if they wrote about these children/adults and included chapters on them, then there must have been enough cases appearing on a regular basis that they felt the behaviors and their observations were more than an errant anomaly.

There has often been a question as to the frequency of occurrence of FASD.

Many researchers ask,
“If maternal alcohol consumption is such a problem, why did we not hear about it before 1968?”

Modern estimates have ranged from 9.7 per 10,000 births to almost 1 per 100. The lower estimates do not reflect the occurrence of the non-physical forms of FAS [also called Fetal Alcohol Effects (FAE), partial FAS (pFAS), Prenatal Effects of Alcohol (PEA), Alcohol Related Birth Defects (ARBD) and Alcohol Related Neurodevelopmental Disorders (ARND)…all of which are now grouped under the term Fetal Alcohol Spectrum Disorders (FASD)], where only the brain is affected.  FASD without the physical signs (historically referred to as FAE, pFAS, PEA, ARBD, ARND) is thought to occur 3-5 times or more often than the full FAS which has both physical and behavioral manifestations.  Studies are seldom done on conditions that rarely occur.  Therefore, the existent studies and records of conditions that closely resemble FASD but not properly named could mean that unnamed FASD cases existed in enough numbers to be observed and scientifically recorded as far back as the 16th Century.

There are some important caveats to this study.  The researchers of this period were limited by the number of patients they could see and the limitation of correspondence and publications available during their lifetimes.  Note that the Gutenburg Press was first developed in 1450.  Prior to that time, books were copied by hand and there was not any widespread use because of the prohibitive cost and educational exclusivity.  Also, books printed for a few centuries after the invention of the movable press are considered to be rare and difficult to obtain until the general population gained the ability to read and write and generated a greater interest in printed books and articles.    

The words and phrases used in these studies are in the language of the period.  The labels and descriptive phrases do not necessarily have the same connotations then as they do now.  And the different combinations of the words often carry a much different meaning.   For example, having a neurosis is very different from having a neurotic character…the latter considered to be less definitive, more of a lifelong problem and less likely to have a program of treatment than an episodic condition that might be remedied.

It is also important to note that each of the researchers appears to have recognized a particular facet of FASD without recognizing there are other behaviors that may be attributed to the same cause.  This is due to the nature of FASD which follows a wide spectrum of physical and behavioral characteristics.

Finally, contrary to popular opinion, there are, in all probability, several hundred articles and books that have dealt with unrecognized FASD over the centuries. I am constantly finding new ones.  If I have left some out, it was because I have not yet found them.  This present set of information probably represents only 20% of my current file.

Items offset by a *** boundary are those articles that are considered to be pivotal in refuting the research that indicated that maternal drinking caused physical and mental problems in the offspring. I included them because they give an idea of when the researchers started to deny the connection between maternal drinking and fetal damage.   

Editions of the Merck Manual for physicians and medical personnel (1950-2005) have been added in order to demonstrate what is being taught in psychiatry and psychology classes.  This includes description of the conditions and the treatments and/or recommended therapies.

Notations on the printings of the Special Reports to Congress on Alcohol and Health (1978-2000) were added because of the extensive amount of current research that was presented in each report and because the bibliographies indicate the large number of researchers presently in the field.  It also marks the entrance of the federal government into the recognition of Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorders.

Other notations on various landmark decisions, laws or studies on FAS were included to compare the action of the government and of the medical community.

Peggy Seo Oba has been a driving force to help parents and professionals connect the puzzle pieces of FASD by helping us connect the research studies. 

Peggy Oba’s work in The Fetal Alcohol Syndrome Information Network (FASIN) offers information regarding FASD in many cultures and languages. Hidden in documents – what we know today.

FAS in Antiquity

  • Biblical References.  Exodus, 20:5:  “…visiting the iniquity of the fathers upon the children unto the third and fourth generation…”  (Fathers, in this case, may be thought of as parents in general.) 
  • Judges, 13:3-5:  “…you shall conceive and bear a son…take no wine or strong drink and to eat nothing unclean…for this boy is to be consecrated to God from the womb.”  (Said to Samson’s mother and not to the Jewish community in general.)
  • 814-146 B.C.  Carthage (city-state) in Northeast Africa.   From “The Effects of Drinking on Offspring” by Rebecca Warner and Henry L. Rosett in Journal of Studies on Alcohol, (1975.  Warner and Rosett mention that the ancient civilization of Carthage (814-146 B.C.) forbid the use of alcohol for newlyweds.  Cited from Robert Burton’s Anatomy of Melancholia (1621).  This information has also been variously cited  J.P. Frank in System einer vollstandingen medincinischen Polizei (1784) and by Haggard and Jellinek in Alcohol Explored (1944). 
  • 725-371 B.C.  Sparta (city-state) in Greece.    From “The Effects of Drinking on Offspring” by Rebecca Warner and Henry L. Rosett in Journal of Studies on Alcohol, (1975.  Warner and Rosett mention that the ancient civilization of Sparta (725-371 B.C.) forbid the use of alcohol for newlyweds.  This is cited from Robert Burton’s work, Anatomy of Melancholia (1621). 
  • Plutarche’s Life of Lycurgus, on Sparta, “In order to the good education of their youth, he went so far back as to take into consideration their very conception and birth by regulating the marriages.”  From an article in the British Medical Journal by Dr. John Haddon (1876).  [Plutarche also suggested that pregnant women exercise.]
  • 500 B.C.  Buddhism’s Five Precepts warn against strong drink.  From East Asia:  The Great Tradition by Edwin Reischauer.  (1958) Harvard:  Harvard University Press. 
  • 427-347 B.C.  Plato’s  Laws.  From “The Effects of Drinking on Offspring” by Rebecca Warner and Henry L. Rosett in Journal of Studies on Alcohol, (1975). 1397,  Robert Burton’s Anatomy of Melancholia (1621) noted that Plato (427-347 B.C.) recommended that newly married couples forgo alcohol…”…that the child that is begotten may be sprung from the loins of sober parents.”  The last quote is from Ernest Abel in Fetal Alcohol Syndrome and Fetal Alcohol Effects (1984).
  • 322 B.C. Aristole’s Problemata.   From a journal study by A. Lynn Martin.  (2003) “Fetal Alcohol Syndrome in Europe, 1300-1700:  A Review of Data on Alcohol Consumption and a Hypothesis”. Food and Foodways.  Martin mentions the work of Robert Burton’s Anatomy of Melancholia (1621), in which he talks of ancient Greek authorities (Aristole in Problemata in 322, B.C.) who stated, ” Foolish, drunken or hair-brained women, for the most part bring forth children like unto themselves, morose and languid.”  
  • 120 A.D.  Plutarche in Symposiacs. From “The Effects of Drinking on Offspring” by Rebecca Warner and Henry L. Rosett in Journal of Studies on Alcohol, (1975),  Burton in Anatomy of Melancholia (1621) is also said to have quoted Plutarch (120 A.D.), “..one drunkard begets another…” 
  • 130-180 A.D.  Aulus Gellius (Roman).    From “The Effects of Drinking on Offspring” by Rebecca Warner and Henry L. Rosett in Journal of Studies on Alcohol, (1975),  Robert Burton reported Gellius (130-180 A.D.), a Roman diarist,  is cited as saying, “…if a drunken man get a child, it will never likely have a good brain.”  
  • 200-500 A.D. Babylonian Talmud, Kehuboth, 32b, warns, “One who drinks intoxicating liquor will have ungainly children.”  From Michael Dorris’ The Broken Cord (1989).

Of interest in history from China legend

The earliest alcohol makers in Chinese legend were Yi Di and Du Kang of the Xia Dynasty (about 2000 BC-1600 BC). Research shows that ordinary beer, with an alcoholic content of 4% to 5%, was widely consumed in ancient China and was even mentioned on oracle bone inscriptions as offerings to spirits during sacrifices in the Shang Dynasty (1600 BC–1046 BC). After that, Chinese discovered that adding more cooked grain in water during fermentation could increase the alcohol content, so stronger drinks began to appear. Around 1000 BC, the Chinese created an alcoholic beverage which was stronger than 11%. The potent libation was mentioned in poetry throughout the Zhou Dynasty (1050 BC–256 BC). Meanwhile, no beer in the West reached 11% until the 12th century, when distilled alcohol was first made in Italy. In Tang Dynasty, Alcohol was famous by Li Bai who is titled poem god. For Li Bai always has inspiration of poem when he drink wine . That’s why he is called poem god. (Source Top 10 Greatest Inventions of China)

We ask that if you have further information you may believe is a historic clue to FASD that you let us know so we may add it to this list. 

Thank you — Peggy Oba

Translation is a bridge to understanding

Red Shoes Rock honors the FASD pioneers –
Peggy Seo Oba – Thank you!

Peggy Seo Oba tenaciously has been a driving force to help parents and professionals connect the puzzle pieces of FASD by helping us connect the research studies. 

Peggy Oba’s work in The Fetal Alcohol Syndrome Information Network (FASIN) offers information regarding FASD in many cultures and languages. She has translated her work from English into the following languages:

Screenshot 2018-06-25 09.20.18

Peggy also translated understanding for dental professionals. 

In 1997, Peggy wrote “Dental Procedures and the Patient with Fetal Alcohol Syndrome” and it was published as a slightly abbreviated article in ACCESS: Journal of the American Dental Hygienists Association in May-June, 1997. Pages 60-64 under her maiden name of “Seo“.

We have included an excellent excerpt all of us can utilize for any medical or dental appointment: (1996)

  • One of the ways in which the patient with FAS makes sense of his world is to have a great deal of structure and routine in his environment. Unfortunately, dental visits are breaks in the normal routine and may be upsetting to the patient. In order to avoid the suddenness of a dental visit, take photos of the dental office and staff before hand to remind the patient of previous visits. Review the photographs each day for about two weeks prior to the appointment.
  • Make the appointment at the quietest time of the day or even after regular hours. On a practice visit, walk the patient through the procedures and use the exact treatment rooms and instruments that you intend to use. Patients with FAS are very literal and they will become confused if you use the term “like this” and then that instrument or procedure is not used. Show them the exact instruments and materials you will be using to avoid confusion and misunderstanding.
  • Review the medication history carefully. Many patients with FAS have extreme reactions to medications and it is best to consult with the parent and pediatrician when administering anesthetics.
  • Sensory integration dysfunction is a neurological condition that causes sights, sounds, and physical sensations to be over or under exaggerated. It is also not uniform in each individual; hypo and hyper sensitivities may exist in different areas on the same individual.
  • Visually, objects on the wall or hanging from the treatment lamp may be disturbing. Patterned curtains that sway near an air vent may be very distracting. Making the treatment room as plain and uncluttered as possible will help to prevent over excitement and over stimulation. Dark glasses will reduce the glare from overhead lights.
  • Patients with FAS may experience more “loud” sounds than the average person. The sound of the hand piece may seem extremely loud to them. Music headphones can be a great help. Warn patients of noise and new phases of the procedure will reduce tension. Speak directly to a patient with FAS. They are very visual and often cannot understand if you turn away when you speak. Hand gestures, signing, and visual aids will help them to understand you more clearly.
  • Patients with FAS often need to “unwind” or calm themselves down before treatment begins. This may include walking around the room or fidgeting with their hands. You may want to give them a rubber ball to squeeze. One calming aid is the lead apron used during dental x-rays. The weight of the lead apron is very comforting to the patient and it may be useful to let them wear it throughout the treatment.

In addition, Peggy Seo Oba’s extensive study of the history of FASD. From antiquity to present times, alcohol consumption during pregnancy has been known to affect the baby helps us understand where we have been and perhaps better answer the following questions.

Why has it only been relatively recently that it has been given a name?

And why did it take so many years to even decide on an accepted name?

Why do we still argue about diagnosis strategies?

Let’s take a look at the past study by Peggy Oba

TOMORROW WE WILL BEGIN OUR
JOURNEY INTO THE HISTORY 
OF FASD.

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