Life guard strategies

Red Shoes Rock honors the FASD pioneer – Jan Lutke – Thank you!

Jan Lutke is a first-person/child thinker
and doer. She is also a giver back to
empower her community—the world.

Albert Einstein said: “The problems that we face cannot be solved by the same level of thinking that created them”

Jan’s work threw families and professionals a Life Saver Ring for the survival of our young people.

Jan Lutke and Brenda Knight – photo taken by NOFAS at the 6th International Conference on FASD in Vancouver, Canada, March 4-7, 2015 “We Can Prevent FASD!”

So many of our pioneers have laid the foundations of caregiving that professionals and parents following have relied on as “just the way it is.” Red Shoes Rock wants to share the work that “real individuals like Jan Lutke” bushwhacked to make a path for others to follow. We humbly and thoughtfully share her work in hopes that understanding the beginning will magnify the present and change the future.

The FASD Community is grateful to Jan Lutke for her expert work in the development and planning as Conference Chair for the International Research Conference and the International Research Conference on Adolescents and Adults with FASD in Vancouver, BC, Canada. To learn more about these enriching conferences.

Hard Issues for Parents of Adolescents and
Adults with FASD: Playing Lifeguard
© Jan Lutke
One of the things, if you let it, that parenting adolescents and adults with FASD makes you face is your core values. That can work for you, or against you. It depends on how honest you are with your own personal circumstances, how willing or able you are to grow and change, and how able you may be to adapt. One thing is for sure, refusing to at least consider the possibility that some of our core beliefs may be part of the problems we encounter removes any likelihood that we can structure change in areas we control.
Most of us have not really even thought about what our beliefs are. We simply espouse to the idea of values, without ever having elucidated them in a clear, orchestrated manner. You have to do that before you can either defend and retain or let go of them. And yet we, and the rest of society’s systems in which our children are forced to interact, expect our children to be able to follow those values – social rules – which are, at best, small raindrops in a huge pond rippling every which way as the wind blows.
The pond is the value. The accumulating raindrops are the myriad of small things that continue to build and change the value over time. The waves are the events, and the winds are the circumstances. The rock that then gets thrown into this mixture is the place where that value needs to be used.
Never are things the same twice.
Those of us who have the ultimate luxury of a brain hard-wired to accommodate being perpetually seasick, have at our disposal a boat, a motor, fuel, a set of oars, a bailing bucket, lifejackets, a map, a radio, not to mention boots, a raincoat, and an umbrella. We also know how to understand the captain’s orders. We know how to follow them. We know how to work the radio and send a mayday if need be.
This is not true for the adolescent or adult with FASD. He has fallen overboard in that pond. He is alone and adrift without a lifejacket, unable to see the shore, trying desperately to keep his head above water.
What must it feel like to be so perpetually close to drowning all the time?

Lifeguard Strategies For Supporting
Adolescents and Adults Affected
by FASD is a FREE download

The FREE BOOKLET was developed as the result of a workshop exercise designed by Brenda Bennett, founding director of FASD Life’s Journey Inc. in Winnipeg, Manitoba. As the presenter, at a workshop, entitled Strategies for Supporting Youth and Adults with FASD Within Community Social Services, Brenda first read Hard Issues for Parents of Adolescents and Adults with FASD, Issue #1, Playing Lifeguard, written by ©Jan Lutke of FASD Connections (www.fasdconnections.ca).  Jan Lueke generously has allowed her article to be shared with the world. Special thank you to all the workshop participants who contributed their hearts and minds and experience to this effort.

Brenda shared Jan’s analogy to assist the audience in appreciating the magnitude of the difficulties encountered by an affected adult merely to keep their head above water on a day to day basis. Part of a workshop Strategies for Supporting Youth and Adults with FASD within Community Social Services and Presented by Brenda Bennett, February 7–10, 2006, in Saskatoon, Saskatchewan at The FASD Network which was created originally by families for families and individuals.

More Strategies from Jan:

We love the artwork at http://northstarpaths.com/visuals/ Thank you for making a difference to help people succeed

Handling Money – (Click to see full article)

I guess we need to look at this whole issue around functional independence in society. If you can’t budget and you can’t make your money last, and you can’t make change properly, and you don’t understand values, you just might be going to be taken advantage of a whole lot as an adult.

Society says, “Get on with it”. A lot of the adults I work with are on disability social assistance and they cannot, if they are handling their own money, survive because they can’t make it last.

Have any of you have seen the “David” video. David did his first solo grocery shopping bought $80 worth of food for what his support worker spent $40 on. The bottom line is if it takes you twice as much money to buy the same stuff you are going to be real hungry fast.

Tina tells us the story about a young man she took to pay some bills and he gave a $10 tip for a $1.95 item. He said to her “It’s not very much money!” But he had no idea. He didn’t know. He just didn’t understand. He didn’t know. They can’t understand those things.

The money is spent right away. As soon as money is in their hands, it’s gone. Now! Instantly! Impulsively!

Relationships and Therapies

Sometimes the worst thing you can do with people with FAS is to put them in group therapy or maybe talk about something like offending because then they get stuck on the thought. Always think about what the FAS piece is in this and how does it affect this particular person before you make a decision about what you are going to do. (Note from Jodee – we have seen this happen to many adults who are court ordered to attend AA meetings and then fall because of the stories shared in the group, they cannot get out of their heads.)

Relationships require a lot of outside work and support in order to work. I would like to see us try to set up things for unaffected partners and friends that they could get FAS specific training and counselling and a lot of personal support themselves so that they can learn how to better relate to the person with FAS.

Employment

Job coaches, if you want to have success in employment, job coaching for many has to be long term.

Parents, you know your children better than anyone else advocates for him or her. You can say, “I disagree with you ,and I know my child better than you.” You just have to get up and say that, and they are all going to hate your guts, but they go home at the end of the day. So the person who should be making those decisions should be the parent. They have a vested interest and know the child better than anyone else especially as they grow up. So they need work which matches the employees needs and the employees ability, and you know what? It is perfectly doable.

Dr. Ed Riley and CJ Lutke – photo taken by NOFAS at the 6th International Conference on FASD in Vancouver, Canada, March 4-7, 2015 “We Can Prevent FASD!”

And Red Shoes Rock is grateful that like her mother, Jan’s daughter, CJ, has become a forceful, yet loving FASD advocate. She was raised by one of the best.

CJ Lutke, Myles Himmelreich and Emily Travis co-authored a survey of 541 people living with the disorder in Canada and the United States to see how commonly they experience other physical and mental health conditions. Read more here Adults exposed to alcohol before birth appear prone to health conditions.

CJ says it best, “I am not a statistic. I am not like you, but my brain works. I am not an FAS case. I am a person with FAS. I have a disability, but my spirit is whole.”

WANT MORE OF JAN’S IDEAS

Website:

Booklets:

Articles by Jan Lutke

  • A Multiple “A” System of Service Delivery for Adolescents and Adults with FASD
  • Useful One Liners
  • FASD and Justice Issues at the Community Level in the NWT With funding from
  • the Crime Prevention Action Fund
  • The “S” System for Working with Adults with FASD
  • The Ten “L” Model for Life with FASD
  • Guiding Principles for Working with Adolescents and Adults with FASD
  • Ever Wondered . . . . How did these things/expressions/actions come about?
  • The ABC’s of Working with FASD
  • The Social Tattoo: Let’s Really Talk about FASD
  • Hard Issues for Parents of Adolescents and Adults with FASD: Playing Lifeguard

 

Compassion builds communities

Red Shoes Rock honors the FASD pioneer – Audrey Salahub – Thank you!

In 1993, citizens from the community of Maple Ridge, BC, began a coordinated and strategic process to address the issue of Fetal Alcohol Spectrum Disorder (FASD). 

This grassroots-based group implemented their community action plan, which resulted in the creation of the FASD Society for BC (formerly known as the Greater Vancouver Fetal Alcohol Society) evolving into The Asante Center.

The founders of The Asante Center included:

  • Dr. Kwadwo Ohene Asante, Retired Medical Director Emeritus and Pediatrician, is recognized as an expert in the area of Fetal Alcohol Spectrum Disorder (FASD) and was one of the first pediatricians to study and publish on Fetal Alcohol Syndrome (FAS) in Canada. Dr. Asante was awarded the Meritorious Service Medal of Canada in recognition of more than thirty years of dedicated service for individuals, families, and communities impacted by FASD.
  • Dr. Julianne Conry, from the opening of the Asante Centre until her retirement in 2016, she provided psychological assessments of children, youth, and adults with FASD and other developmental disabilities as part of the multidisciplinary teams at the Asante Centre. Dr. Conry was active in research and the clinical assessment of individuals with FASD for over 30 years and appeared as an expert witness on FASD in the Provincial and Supreme Courts of British Columbia and the Yukon. Following completion of a research study on youth in the criminal justice system, she published a book with Dr. Diane Fast entitled, Fetal Alcohol Syndrome and the Criminal Justice System.

And —- Drum roll
Red Shoes Rock recognizes founding parent advocate

Audrey Salahub
Audrey photo taken by NOFAS at the 6th International Conference on FASD in Vancouver, Canada, March 4-7, 2015 “We Can Prevent FASD!”

Audrey Salahub, (Retired Executive Director)

Audrey is the parent of two adults, one of whom has Fetal Alcohol Syndrome, a diagnosis within the spectrum of FASD.  Audrey has been a driving force behind broad community efforts to address the issue of FASD throughout British Columbia, Canada.  Her vision and her outstanding efforts to mobilize individuals, families, and organizations were fundamental to the establishment of the Asante Centre. 

Circle of support

When Audrey Salahub learned her adopted son had FASD, she educated herself and surrounded her family with a supportive community which included her Fraser Valley neighbors.

Typical effects of prenatal alcohol exposure may include physical, mental, social-emotional and behavioral issues, with lifelong implications for the individual. Each person affected will have variable patterns of disabilities and strengths.

In addition, life circumstances, relationships and experiences will enhance or inhibit life purpose and success. Audrey knew that rather than independent living, her son and the children of so many other parents she became connected to needed adult lives of interdependence in a compassionate community. With increase in stress and caregiving, so do their parents—everyone needed a full circle of support.

The community of humanity in the life of a person with FASD has a tremendous big influence on their success.

And because the brain injury and metabolic issues surrounding FASDs never fully resolve themselves, an individual with FASD will rely upon a supportive community their whole adult lives.

“I thought, if my son were to ever survive in this world, he would need to be able to be in communities that knew about FASD,” Audrey shares.

asante logoThis was the CIRCLE OF SUPPORT needed for our families and our children.

One night, that vision of a protective circle of caring and understanding people crystallized in her mind.

“I saw this baby nestled in the petals of a lotus. and then I thought, ‘Oh my gosh, that’s my son. The petals of the lotus circled him and cushioned him, protecting him so that he could enjoy his life.'”

Each petal represents training and education and diagnosis and all of those things we need. Also acceptance, understanding, compassion and patience. The image became the logo of the Asante Centre, a clinic providing diagnosis and social services for people with FASD, which Audrey co-founded.

Audrey also was the project coordinator for the development of the book Fetal Alcohol Syndrome and the Criminal Justice System,” written by Dr. Julianne Conry and Dr. Diane Fast

Connect with Trainers who live with FASD!

That the Asante Centre supports adults with FASD who offer training on FASD and its implications on their lives, as well as what types of strategies have been helpful. 

Current Dynamic Experts with FASD trainers include: (Click to connect)

  • Myles Himmelreich is a well-known motivational speaker on FASD, having presented nationally and internationally for many years, sharing his experiences in living with FASD.
  • CJ Lutke is a well-known speaker on FASD, having presented at conferences, adoption seminars and other events. She shares her experiences in living with FASD. She also has provided training for second year medical students and does video work.
  • Paul Thompson and Glenda Jansen share their lived experiences – as both an individual living with FASD who has been navigating homelessness, incarcerations and trauma for over 30 years; and a woman working to support him through, and out of, these situations.
 
Please contact the Asante Centre for more information or to book a training event either with a individual trainer with FASD or for an integrated session with a second Asante clinical or program staff trainer.

 

Red Shoes Rock and 99 Days to FASDay

20 Years of FASDay – Red Shoes Rocks steps us up to the celebration finish line building awareness #FASD #REDSHOESROCK

our sacred breath

On June 1 the international movement to bring awareness to Fetal Alcohol Spectrum Disorder began with the start of Red Shoes Rock to Stop FASD and the 99 Days to FASDay. There have been some exciting new additions to this year’s campaign.

Red Shoes Rock: Start the Conversation

Red Shoes Rock 18 logoFor the 5th Anniversary, a new logo, and tag line (Start the Conversation) were created, along with a dedicated website: Red Shoes Rock ~ but before I get into that, let’s take a step back and look at how the red shoe movement began.

I asked Jodee Kulp, one of the co-founders, how this came to be.

In 2013 R.J. Formanek, an adult (and Canadian!) with FASD decided to wear red shoes. He  wanted to stand out and be noticed. He chose red shoes as a way to express his individuality and remind himself that he is unique. And red shoes get noticed…

View original post 841 more words

Someone had to be the key

Red Shoes Rock honors the FASD pioneers –
Her name appropriately was given as a clue. Kee Warner is a true KEY to FASD life with purpose. Thank you!

 Kee Warner and Whitecrow Village
envision a world where people with FASD
are valued for the gifts they bring to all

It will be a world where it is safe to be a person with FASD with a greater community understanding that will lead to the prevention of FASD and to a healthier, happier society for all people.

Shared with Jodee Kulp by Deb Evensen

“There is no one in the world that I have ever worked with that treats people more equally than Kee Warner,” shares Deb Evenson. “With Kee everyone has equal oppotunities, the one with the highest IQ is not necessarily in charge. I have never seen anyone do this to the extent that she does. Her “camps” (live in opportunities) have people with FASD who are the teachers. I remember watching her, she is my teacher. She doesn’t miss anything, she is highly perceptive. She is one of the geniuses behind a lot that has happened in the world of FASD. Kee demonstrates cognitive diversity. Everyone has a voice, absolutely everyone. She is honorable. She does not listen because it is her job to listen. Kee listen because she loves. I watch her work with awe and I see miracles happen.”

For Kee, it is about people. She is a humble person and Red Shoes Rock honors that. Her work and development, with the people she so loves created Whitecrow Village.

Whitecrow Village camps present a microcosm of the “real” world, where we live, work, and play together; and where we learn how to understand and appreciate each other; acknowledging our limitations as well as our gifts.

whitecrow-villageWhy the White Crow?

The white crow in many traditional stories, myths, and legends in many world cultures is initially shunned for its differences. As the telling of the story progresses, the white crow comes to be values for its unique contributions to community. The white crow directs us to look at the gifts and strengths that exist in everyone. The white crow offers hope in the journey of working together toward a society of diverse perspective and abilities of all members, with all members being valued and recognized as important and equal.

FASD can be a platform from which to address community wellness. Whitecrow Village offers long-term consultation and capacity building within communities in a relationship which allows communities to gain an understanding of FASD that reaches into all sectors. Visiting periodically over months or years, Whitecrow Village team members interact with parents and foster parents, social service workers and program managers, local government officials, educators, economic development managers, maintenance and operations managers, Chief and Council, Elders, health care and legal service professionals. Combined Whitecrow Village/community events normalise FASD, mitigate the fear and inspire the community as a whole to move forward toward intentional wellness.

Whitecrow Village is for and about community.
Whitecrow Village programs offer a model for a way of life
and a way of being with one another.

Wherever and whenever we come together, we create a place where regardless of age, colour, gender, social class, disability or ability, sexual preference, religious persuasion, and all other things that have been used to divide and create disharmony among peoples throughout history each person has equal value and belonging. Each voice is heard; as each completes our circle.

Our core Live-In FASD Education (L.I.F.E.) Sessions – affectionately known as “camps” – present a microcosm of the “real” world, where we live, work, and play together; and where we learn how to understand and appreciate each other; acknowledging our limitations as well as our gifts.

“The L.I.F.E. sessions are much more than simply children’s camps. The typical camp activities are structured to support brain differences. The adults have intensive experiential training opportunities that build understanding and collaborative relationships among professionals, parents, paraprofessional, and extended family. …Parents get to experience their children being successful and appreciated by adults. All get to experience the competency of Whitecrow team leaders who  live with FASD.”

– Kee Warner Founder of Whitecrow Village

The foundation of all Whitecrow Village programs is respectful relationship.

Essential elements include:

  • equality and interdependence;
  • routine;
  • structure and consistency;
  • caring honesty;
  • a focus on strengths;
  • anticipation of success;
  • celebration of unique contributions;
  • intentional, effective, and respectful communication;
  • predictable daily routine; and
  • awareness of tangible and
  • intangible environment.

Whitecrow Village consistently model:

  • appropriate language,
  • actions,
  • attitude,
  • healthy nutrition, and
  • self-care.

We insist on maintaining these elements of our model as we know that they not only prevent problems, they also enhance solutions.

“Spirituality is my structure.” Marcel Gagnon

Whitecrow Village is a community of people who value and respect each other for the gifts, abilities, and teachings each brings. We recognise that every human being has an innate need to belong, to contribute, and to be a part of the fabric of family and community life.

“I have never seen anyone that demonstrates truth the way Key does! The depth of what she says is real, raw and powerful.” Deb Evensen.

Whitecrow Village presentations (led primarily by successful adults living with FASD) often astonish and always inspire the audience – both through their content and in the professional and powerful manner in which they are delivered.

**PLEASE NOTE: 

FASD is a complex and nuanced condition. It is the experience of the Whitecrow Village team that a brief exposure to training on FASD can lead to the dangerous and false illusion of a thorough understanding of the full range of characteristics of FASD. For this reason, we do not routinely do short workshops about the academic points of FASD. We do, however, offer comprehensive workshops on specified, focused topics and in the context of the Whitecrow Village community model.

 

A must read blogpost In a Perfect World
Whitecrow Village FASD Society was born in 1996 in response to a parent’s desire to structure an environment through which children affected by Fetal Alcohol Spectrum Disorder (FASD) could experience success at summer camp.  For the first 2 years, the Village offered one 3 ½ week camp for children with FASD per annum, and it was financed “out of pocket” by a single government employee.  By the third year, it became clear that in order for the children to experience continued success beyond the camp setting, it would be necessary for the greater community to learn to recognise the needs of and to witness the many strengths of people living with FASD.  Thus, the inclusion of families, community agencies, and professionals at our week long Live-In FASD Education (L.I.F.E.) training sessions became an integral part of the heuristic Whitecrow Village community model.

PROFESSIONAL IMMERSION PROGRAM CHANGES MINDS INTO HEARTS and PUT THEORY INTO PRACTICE!!

For professionals this hands on experience will be pivotal to your understanding of how to work with  people with an FASD and will impact your professional practice.

During this workshop participants will have the opportunity to:

  • Connect the head and the heart.
  • Learn, work, and play together as a community with families experiencing an FASD.
  • Interact with Canadian team leaders.
  • Engage in classroom and experiential activities that support individuals affected by an FASD.
  • Recognize and appreciate contributions made by people experiencing an FASD.
  • Experience the impact of interdependent living.
  • Observe the effects of a whole foods, no additive diet.
For more detailed information about the Whitecrow Village model and L.I.F.E. Sessions

please visit their website

 

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Starting a fire to melt FASD

Red Shoes Rock honors the FASD pioneers –
An educator’s educator. Deb is a master teacher and friend of those with FASD. Thank you!

What is hidden needed to be exposed. What was exposed needed new growth for life and learning.

Interview with Deb Evensen, by Jodee Kulp

Deb Evensen“I met my first student with FAS in 1982 in Utah. He was a sweet little boy who was just four years old. I was developing a program for children with serious emotional disturbance. I was the head teacher at the school at the Primary Children’s Medical Center – Psychiatric Facility.  It was lunch time and I was putting blue cheese dressing on my salad while a psychiatric resident was telling me about a newly discovered syndrome.

“It is called Fetal Alcohol Syndrome” she said.

And my mind shouted, “Deb, pay attention to this. This is important.” And it was, it actually became my life’s work.

So listened carefully. 

When I moved to Alaska, I began working in the Alaskan bush. I was recognizing what was happening in the bush and began to speak out. From 1988 to the early 90’s many young people with prenatal exposure crossed my life and mind. They had been in full view before, but I had rarely noticed—it took putting a face and behavioral symptoms—on this new disorder.

I was invited to present at the first international conference on FASD in Fairbanks that Judy Kleinfeld wrote a grant to pull together people from all over the world by invitation only. It was a small gathering and I presented the research of what I say was going on.  The earlier statement and the conference connected the dots. I have been educating school districts and other organizations about Fetal Alcohol Spectrum Disorders ever since.

Kathy_Deb_Evensen-300x225
Deb Evensen and Kathy Mitchell – photo taken by NOFAS at the 6th International Conference on FASD in Vancouver, Canada, March 4-7, 2015 “We Can Prevent FASD!”

At that moment, Deb Evensen transformed to an outspoken advocate for those living with FASD, and behavior specialist with more than 35 years’ experience teaching children, adolescents and adults. She is a pioneer in discovering practical solutions that work for individuals with fetal alcohol spectrum disorders. She has spent thousands of hours helping to find solutions within communities across North America facing FASD and from each unique individual she has gained wisdom she shares.

 

janlutke-deb-deb-evensen-8-magic-keys
We love the artwork at http://northstarpaths.com/visuals/ Thank you for making a difference to help people succeed. Illustration by Kristin Wiens

Deb offers FREE DOWNLOADS to help educators and parents.

  1. 8 Magic Keys by Deb Evensen and Jan Lutke
    These simple strategies can be a guide for teachers to help students with FASD improve their academic and behavioral performance. (8 Magic Keys – Video)
  2. Manual for teachers
    This resource was designed to assist teachers and other educational professionals in helping students with an FASD overcome their neurobehavioral challenges so they can achieve their highest potential in the classroom.
  3. Deb’s Website – http://www.fased.com/

Deb Evensen — Alcohol and Me

NOFAS Affiliate – Alaska

Help for Educators (and parents)

TOMORROW WE WILL INTRODUCE THE KEY!

 

Collaboration Makes Hard Work, Work!

Red Shoes Rock honors the FASD pioneers –
What if person can change a city as big as New York City?
Susan Rose – Thank you!

Susan Rose, tackled the hidden
the white elephant in NYC and
her writing goes around the globe.

Susan Rose, (now retired) is the founder and past president of the Fetal Alcohol Syndrome Support Network of New York City and Long Island or FASSN for short.
Susan Rose, (now retired) is the founder and past president of the Fetal Alcohol Syndrome Support Network of New York City and Long Island or FASSN for short.

What do you do if you are the aunt of a child with Fetal Alcohol Spectrum Disorders, plus an educator, writer, stage director, bureaucrat and businesswoman? Did I mention pianist? And you muster all you have to find resources to help your special child—and you find—zilch—nada—none—in the largest metropolitan area in the whole USA—New York City!

If you are Susan Rose, you roll up your sleeves and begin The Fetal Alcohol Syndrome Support Network of NYC and Long Island, Inc. (FASSN). And you take on a mentor to ‘take on City Hall’ to create FASSN. Her goal was to educate every commissioner of every NYC government agency, the doctors of all major hospitals and the public about prevention, identification, and interventions of and for FASDs. Susan has the gift of collaboration, and she used it to make an impact.

Big projects often have small beginnings, and the dots to connect prenatal alcohol exposure to behaviors was on the forefront.

In 1972, Susan was appointed by Mayor White of Boston as Program Developer for the 50 teen centers located in the most impoverished areas/ projects of Boston. Her job was to assess the needs of these centers and then to develop appropriate programs.

By getting to know the counselors, parents, and their children, she made the connection between mothers with alcohol use disorders and their children who had specific facial and body traits and very disturbing behaviors.

Deeply concerned about this finding, Susan Rose brought this to the attention of the mayor who approved a study.

Susan’s early work made the difference in her next steps to build awareness for FASD.

With the knowledge, encouragement, and guidance of Luther K. Robinson, M.D., Sandra Gangell (Robinson), and Divine intervention, FASSN succeeded beyond any reasonable expectations.

FASSN started the first computerized FAS hotline in the U.S. with initial calls from social workers and medical professionals.

This hotline demonstrated the need for FASSN to research all the available resources in lower New York. These FAS resources were then listed on state and local websites. Because many of the callers were also from out-of-state, it was necessary for FASSN to connect with NOFAS and their affiliates to coordinate referrals. The computerized hotline also showed where the calls originated. This allowed FASSN the ability to identify the high-risk areas for planning purposes.

With fellow collaborators, Margo Singer and Dianne O’Connor, the first FAS Conference in NYC at Columbia University was very successful between FASSN and the New York FAS Task Force.

  • Susan and Dianne co-presented a 6-hour FAS training for all NYC’s Children’s Services’ (ACS) social workers. They created, for ACS, one of the most comprehensive PowerPoint presentations for this event that was given to all the social workers to train their own teams. Then the presentation was placed online for anyone to download.

Let’s educate lawyers and judges

The first NYC seminar to educate lawyers and judges in NYC about FAS was made possible when Susan connected one of the city’s largest law firms with the NYS FAS Taskforce. Susan’s collaboration with Kay Kelly and a Canadian lawyer resulted in her ‘FAS and the Law’ article that was published by the Queens Bar Association. This was another NYS ‘first’.

Sometimes it takes a 10-page letter

The last Commissioner of the Department of Health and Mental Hygiene of NYC that Susan educated about FAS became the Director of the Centers for Disease Control and Prevention (CDC) and acting administrator of the Agency for Toxic Substances and Disease Registry from 2009 to 2017. Susan’s first contact with Thomas Frieden, M.D. was met with his request for ‘brief’ answers to three questions. Susan replied with a 10-page letter with references. To Dr. Frieden’s credit, he read all 10 pages. Not too long after this exchange, Dr. Frieden was appointed to head the CDC.

Let’s put a face on FASD

Another project, a slideshow of pictures of children and young adults who have FASDs, was the first time a ‘face’ was put on FASDs. And for the first time the faces shared showed the bigger pictures of the spectrum of this disorder.   This slideshow has been used globally for educational purposes. The non-music version is particularly useful for grand rounds so doctors can observe FASDs with or without facial (sentinel) characteristics.

Note from Jodee — in Canada, FASD is now a diagnostic term

Whereas the 2005 guideline identified fetal alcohol spectrum disorder (FASD) as an umbrella term capturing specific diagnoses of FAS, pFAS, and ARND, under the 2015 guideline FASD is now a diagnostic term in Canada.

The new two Canadian diagnostic terms include:
1.    Fetal alcohol spectrum disorder with sentinel facial findings (i.e. short palpebral fissures, smooth philtrum, and thin upper lip, as associated with prenatal alcohol exposure)
2.    Fetal alcohol spectrum disorder with no sentinel facial findings

Fine tuning the Nine-Zero Project

Susan piloted ARC’s Nine-Zero Project in many New York City and L.I. High school districts to determine how best to raise FAS awareness in a city with such diversity. She fine-tuned the Nine-Zero project for health classes. For A.P. Biology classes, Susan used her hospital and doctor grand round PowerPoint presentation.

According to Susan, “I’ve never seen such an outburst of enthusiasm and shock from students. One male student stood up and pointedly asked, ‘why isn’t this taught in every school system?’”

Before starting a media campaign to inform the public about FAS, Susan first vetted physicians throughout NYC and L.I. Who could be listed as FAS diagnosticians? As a result, FASSN was able to refer parents and health professionals to physicians who are knowledgeable about the disorders. It was notable that most hospitals did not know who the FAS experts were on their staff, so this was a far more difficult process than expected. Since only one FAS psychologist was found in all of lower New York, Susan was given permission by the FAS Task Force to counsel parents about to raise children who have FASDs.

AND she wrote articles for magazines and newspapers.

Including an article in COSTCO! She arranged for television interviews, and it paid off. The producer of ‘Law and Order’ contacted FASSN for an episode involving FAS.

Is anyone tired yet of just reading what this dynamo accomplished—all the seeds she planted to be watered by the next generations of advocates, caregivers, and professionals.  

Thank you, Susan, from Red Shoes Rock “Job, well done!”

 

 

Little Dreams Grow Big Rainbow!

Red Shoes Rock honors the FASD pioneers –
Patty Munter – Thank you!

It takes a spark to get the fire started.
Patti Munter was just the Spark needed
to start NOFAS

In South Dakota, Patti Munter launched a movement to prevent alcohol-exposed pregnancies and give hope to families who had been ignored. Her determination continues to drive NOFAS each and every day.

NOFAS Logo
The NOFAS Logo was designed in 1995 by Karli Mitchell – Learn more about the logo here.

Patti Munter founded the National Organization on Fetal Alcohol Syndrome (NOFAS) in 1990 to promote the research and awareness of Fetal Alcohol Syndrome, the leading known cause of intellectual disability. Her interest in Fetal Alcohol Syndrome (FAS) was piqued through her work on the Pine Ridge Indian Reservation and while living in Santa Fe, New Mexico. During that time she witnessed first-hand the tragedy of FAS in those communities.

Yes, NO-FAS begin in South Dakota.

When NOFAS founder, Patti Munter, moved the organization to Washington D.C. in 1991 the first thing she did was ask her college roommate and friend, Kara Kennedy, (1960-2011) for advice. Kennedy provided something more: she called on Washingtonians committed to public service to serve on the board, rallied policymakers to take up the fight against Fetal Alcohol Syndrome, and, she raised money. Her work helped firmly establish NOFAS, still the only national organization addressing the nation’s leading preventable cause of intellectual disabilities.
Source NOFAS Website (READ MORE)

Within the first eight months of founding NOFAS, Munter was asked to testify before the House Appropriations Committee on the issue of FAS. She was later appointed by Dr. Everett Rhoades, Director of Indian Health Service, to head the first national Task Force on Fetal Alcohol Syndrome, which resulted in a model FAS/FAE training program for Community Health Representatives, the primary health care providers on American Indian reservations.

Munter and her team:

  • Coordinated national conferences in Albuquerque, NM and Minneapolis, MN, attracting over 1,000 attendees;
  • Helped develop the first curriculum on FAS for medical students, now at the University of New Mexico, Georgetown University, and Northwestern University;
  • Produced six statewide public awareness campaigns featuring Queen Latifah and Bonnie Raitt, Jimmy Smits and Rodney Grant;
  • First in a series of interactive books to teach the dangers of alcohol to kindergarten children.
  • Munter was profiled on the Today Show, Larry King Live, and Working Woman.

From 1990-1996, while Munter served as President, NOFAS grew dramatically and now serves as the only national organization committed to preventing and raising public awareness about Fetal Alcohol Syndrome and Fetal Alcohol Effect (FAS/FAE).

Watch 1990’s NOFAS on CNN with Patti Munter – it is incredible that this battle is still being fought – thank you Patti for fighting the good fight and for beginning this organization and creating the public awareness.

Interested in the History of FASD – Listen to Dr. Kenneth Lyons Jones on the History of Fetal Alcohol Syndrome – FASD – This is FAScinating!

TOMORROW MEET A MOM WILLING TO BE TRANSPARENT TO CHANGE THE STIGMA FOR BIRTH MOTHERS – KATHY MITCHELL

The FAS Pests of the West

Red Shoes Rock honors the FASD pioneers –
FASTimes Team SHINES BIG IN HISTORY – Thank you!

Very busy bees in Washington that took on the task to change how people think about FASD.

Shared by Jocie DeVries – thank you

Let’s see:
Our core team was Vicky McKinney, Linda LaFever,
Ann Waller, Delinda McCann and I.

FASTimes-Team
Back Row Left to Right Linda LaFever, Jocie DeVries, Pat Barkley (Vicky’s sister) Front row: Ann Waller, Delinda McCann, Vicky McKinney Dog: Mo

Jocie DeVries, mine, was based on my presentation of WHY prevention was important (FAS with an average IQ). To introduce this concept, Dr. Sterling Clarren recommended me to ABC to introduce FAS and a normal IQ level side by side to his “new” research. That was the spring of 1992? And you already know about me, so let our stories.

Vicky-Pinder-McKinneyVicky McKinney’s our co-directors specialty was prevention (Dare actually asked her to donate her presentation to the DARE Program (It was her family’s story for heaven’s sake). After the disbanding of the FAS Family Resource Institute, Vicky still had energy to spare and went to work as Director of the Parent Training and Information Center of Washington, funded by the Dept. of Education. She managed and trained Parent Coordinators who advocated for students with disabilities throughout the state. Now that Jocie has retired (again) her goal is to grow and produce fine wine from grapes grown in her own yard and enjoy her grandbabies. She enjoys hosting parties on her infamous deck and photographing sunrises on Mayfield Lake with her family and friends. In the summertime you will often find her at various Blues Festivals.

Linda LaFever’s specialty was the birth mother story. Her presentation won one of the two top presentations of the National ARK’s Prevention Summit in Maryland (I think it was 1993) I won the other anchor presentation other. Telling a birth mother story takes bravery — Linda showed her courage again and again. Linda is retired and living on the beach with her husband in Ocean Shores. Her son, Danny, is happy, healthy and living in his own little place on their property. Linda’s had a few ups and downs, but in spite of her health issues, she is passionately involved with her church and frequently vacations in Israel where her daughter lives. Her autobiography, “Cheer’s Here to the Baby!” is beloved by both her friends and colleagues; when she retired she donated the remaining copies of her book to The Division of Alcohol and Substances Abuse to use in prevention programs for women who struggle with addiction. Linda is still as lovely and vibrant as ever.

Ann Waller came on board around 1993, she had just finished her Master’s Degree in Computer Science, and she devoted her career to me to help me with writing skills so I wouldn’t look so inept in advocacy in the professional world. Ann has recently completed an eleven-year journey of wholistic inner healing for her PTSD and OCD perfectionistic tendencies. This has involved classes in theology, Strengths Finders, Celebrate Recovery, and also treatment, trainings, and practice in several types of alternative/complimentary approaches to healing, such as hypnotherapy; breathwork; Reiki; ThetaHealing; Total Biology/Recall Healing; Energy Medicine and a whole lot of prayer and meditation. She is now healthy and whole–free to live her faith, day by day in Divine Love, for which she is deeply grateful. Her husband is a retired minister and a university Professor Emeritus as of two years ago. Last fall (2017) they took a three month trip to Haiti where her husband was an interim pastor for an English-speaking non-denominational church. When people ask her if she is keeping busy, she answers, “As busy as I want to be.” She’s still living in Nampa, ID.

Delinda McCann was on original board of Directors. She always our point of contact for our conference table, very good with the public, a good writer for FAS Times and was a rock behind the scenes in State Agencies. Delinda is still running her flower farm on Vashon Island. Occasionally she writes an article about Fetal Alcohol Syndrome or other children’s issues. Delinda’s other writing includes several novels. She includes characters with disabilities in each story. This is another opportunity for her to remind women not to drink when pregnant. She posts her essays and short stories on her blog. In addition to farming, writing and making music she tries to fit in vacations to warm climates. Her upcoming novel, Lucy Goes Home should be released in the fall of 2018.

Links:
Blog: https://delindalmccann.weebly.com/blog
Web Site: https://delindalmccann.weebly.com

Books by Delinda McCann:

Larry Burd, Ann Streissguth, Ed Riley always had our backs and never said a word of criticism against us as far as we knew.  I am so grateful for their support.

FASD-Streissguth-2To Ann Streissguth Thank You I originally used the term that that affected folks with a normal IQ were like moral chameleons and Ann Streissguth used that in her literature so sippers would leave me alone. She also invited me (with Ann Waller) to write a chapter in her book The Challenge of Fetal Alcohol Syndrome (Overcoming Secondary Disabilities) published by the University of Washington Press in 1997. The title of our chapter was Parent Advocacy in FAS Public Policy Change.

Not many people know this, but when Senator Tom Daschle was proposing the 25 million dollar appropriation for FAS, he told us it was never going to pass unless we found him a Republican Senator to co-sponsor. We asked our Senator Slade Gorton, and he agreed immediately, and the 25 million was unanimously passed a few days later. The fed agencies always said they got the appropriation, but they didn’t as far as we could ever discover. We never went back for another appropriation because none of the money ever went to services for affected children and families.

TOMORROW LET’S FIND OUT HOW SOMETHING BIG CAN BEGIN IN SMALL PLACES – NOFAS began in SOUTH DAKOTA?

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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/

Help! We Needed FAS Times.

Red Shoes Rock honors the FASD pioneers –
Jocie DeVries – Thank you!

This Tower of Power
Shone Light in the Darkness of FASD

Jocie DeVries:
mother, FAS*FRI founder, advocate, visionary.

JocieDevriesFrantic calls poured into the Washington State Adoption Program in 1991 from overwhelmed and desperate parents trying to raise adoptive children with special needs. Managers of that program asked a parent participant to write a summary of her family’s experience in raising two children diagnosed with Fetal Alcohol Syndrome. That mom was the dynamo, Jocie DeVries.

Jocie wrote the letter and every family receiving Adoption Support was sent a copy. In 1991, parenting children with FASD was barely understood, behaviors were misunderstood, and families were struggling.

  • What if parents pooled their information?
  • Could we expand our understanding and knowledge if we shared our experiences?
  • Could we work together to come up with strategies and solutions?

The adoption staff encouraged, Jocie to continue and expand the communication and information exchange between families. The resulting body of information came to be called the Collective Family Experience on FASD because it described the behaviors and experiences most common to families raising children with FASD. This Collective Family Experience grew and developed into a vital body of information and expertise, straight from the wisdom of practice and frontline experience.

As Jocie compassionately shared her adoption experience, I realized she was describing the very behaviors we were struggling to understand within our home!A MOM was giving me answers that no professional had yet been able to do.There is a place in my heart that will always belong just to you, Jocie. You are my hero. You are my angel friend. — Dorothy Beckwith

Jocie’s original letter naturally evolved into an informal newsletter sent out to other parents. In 1992, it became a more formal intermittent newsletter called, FAS Times. FAS Times was shared from person to person. Professionals in many services systems asked to be added to the mailing list.

Nurture-The-Essence-of-intervention
Nurture: The Essence of Intervention by Victoria McKinney, Linda La Fever, and Jocie DeVries are for sale on Amazon.com. All monies received to go to support further research on the development of people with FASD

In 1995, the Division of Alcohol and Substance Abuse in DSHS recognized the value of the newsletter and funded the FAS Family Resource Institute for its quarterly publication through June 2008. At the height of circulation, about 3,000 parents and professionals received FAS Times, and it was sent all across the U.S. and to several foreign countries.

Her vision was and still is for every child with FASD to be loved, understood and treated with compassion. Her instinct always went much deeper than finding the next destination as we often heard, “ Okay girls, we’re safe because we’ve been lost here before.”

She could dry the tears of a family in crisis, give them hope and turn around and stamp
her lace stocking foot at a policy maker’s door and send them scurrying for cover. What an amazing woman! – Vicky McKinney & Linda LaFever

Years later, Jocie’s wisdom and articles remain priceless. Much can be gleaned and adapted from her work.
Note: 
The acronym FAS/E evolved into Fetal Alcohol Spectrum Disorders (FASD). To keep the integrity of Josie’s articles Red Shoes Rock has made no editing changes:

FASTimes-Team
Back Row Left to Right Linda LaFever, Jocie DeVries, Pat Barkley (Vicky’s sister) Front row: Ann Waller, Delinda McCann, Vicky McKinney Dog: Mo

Download Back Issues of FAS Times Newsletter

The problems we readily see are only the tip of the iceberg. Jocie’s team realized the difficulties of FASD and seeing only the outward appearance was just the tip of an Iceberg.

And so began ICEBERG, an incredible printed quarterly international educational newsletter on FASD (Fetal Alcohol Spectrum Disorders) from Fetal Alcohol Syndrome Information System (FASIS) – founded in 1991 – a parent/professional partnership.

JOCIE HAD A TEAM OF EXCELLENT PEOPLE WORKING WITH HER – TOMORROW MEET “The Pests from The West” that changed the understanding of parenting children with FASD in healthy and a consistent style.

Sign up to follow our journey

SIGN UP FOR OUR NEWSLETTER BELOW – JOIN THE MOVEMENT

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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/

Someone had to plant the FAS garden.

Red Shoes Rock honors the FASD pioneers –
Dr. Ann Streissguth – Thank you!

Ann’s work has blossomed,
her seeds have scattered around the globe to
help persons grow while living with FASD.

The FASD worldwide community is eternally grateful to
Ann Streissguth: mother, research scientist, monarch,
gentle spirit, honored woman.

ann_steissguthcombo_w400

Ann Streissguth’s gardening began when she married Dan, her beloved in 1968. Together, along with their son, Ben, they have cleared jungles of horsetail, wild blackberry, boggy muck and overgrown trees. They have carefully designed, planted, weeded and irrigated to create the Streissguth Gardens.

Ann and Dan’s Garden is also a reflection of Dr. Ann Streissguth’s professional life as a tenacious scientist and researcher into the lives of individuals with FASD. As a researcher, Dr. Streissguth cleared jungles of misunderstanding, created paths of new knowledge, and walked through dark murky water in thunderstorms of adversity to connect the dots of the realities of FASD.

Jodee Kulp states, “I met Ann, just before she retired. I was accompanied by my teen daughter and was impressed with how easily she related to the young people. There was no pretense of superiority or intellect, she met them on equal ground as a peer. I said to myself that day, that is the key.”

It’s been over 45 years since Ann Streissguth evaluated eight children born to alcoholic mothers at the request of her colleagues in the Department of Pediatrics, David Smith and Kenneth Jones.

“I still remember being just absolutely stunned by the damage these kids showed.” Ann said, “I’d been evaluating kids for years–kids who had been born into poverty, kids with physical disabilities, normal kids–but this kind of damage was more organic. I went back and said: ‘Do you really think this damage is from alcohol? Surely there must be something in the literature.’ And then I conducted a painstaking literature search, in the days before computers were used, and came up with nothing.”
— Ann Streissguth

In 1973, pediatricians Jones, Smith and Christy Ulleland, along with Streissguth, published the first widely circulated paper identifying fetal alcohol syndrome and linking it to alcohol abuse by women during pregnancy. It was, then a medical resident, Christy Ulleland who had noticed and questioned her colleagues if this was an undiscovered syndrome.

FASD-Streissguth-2

FASD-Streissguth-1

For the rest of her career, Streissguth pursued understanding the problem: conducting research, trying to find effective means of prevention, and campaigning for better understanding and services for people affected by the condition.

Read tributes to Ann Streissguth – these are lovely.

HillsideGarden

Dr. Streissguth’s work was significant in the healthy growth in the garden in understanding and developing strategies for persons with fetal alcohol spectrum disorders.
Ann’s books are available at Amazon
Dan has created an extensive Web site about Streissguth Gardens:
It includes the history of the garden, photographs and a searchable database of plants it contains.

Interested in the History of FASD – Listen to Dr. Kenneth Lyons Jones on the History of Fetal Alcohol Syndrome – FASD – This is FAScinating!

JocieDevriesTOMORROW YOU WILL SEE HOW
WASHINGTON PARENTS
CHANGED THE
LANDSCAPE OF FASD
WITH JOCIE DEVRIES

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