Finding Calm in the Chaos of Life

Our next pioneer, Dr. Ann Streissguth, is being released at 9:09 this morning. She is a key researcher that has allowed parents, like Yvonne, Ann and myself to use intentional and proactive positive parenting and caregiving with the individuals we love with FASD.

We share this blog first so that people can see the results in thinking because of the next pioneer and her colleagues. Thank you.

Red Shoes Rock is grateful for the writing of Yvonne Williams. Thank you for these today. #FASD.

Excerpt from Yvonne’s Blog (READ FULL BLOG HERE)

I’m simply going to revel in this moment. Enjoy and treasure it. We need to celebrate the small successes, which for our children (and adults) can be big milestones. I’ve told her how proud I am of her. I’ve asked her how she feels about what she is accomplishing and encourage her to be proud of herself. And I always remind her how far she has come and she will continue to move forward.

She may not be where a “typical” nineteen year old is, but she is where she is, and that is fine with me, and it should be fine with everyone else.

We both continue to grow and learn.

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via Finding Calm in the Chaos of Life

One woman connects the world of FASD

Red Shoes Rock honors the FASD pioneers –
Val Surbey – Thank you!

 

We are honored to share
The Perserverance of Val Surbey.

Red Shoes Rock Thanks YOU!

Parents and caregivers of individuals with Fetal Alcohol Spectrum Disorders are often isolated in their caregiving and unless you have personal 24-hour a day caregiving experience, it is difficult to imagine the day-to-day.

written by Bruce Richie
in honor of a dear friend and co-supporter

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Val Surbey, Canada, is a very special lady. She is a gentle, loving, person with enormous strength and grace. She and her husband Vince (RIP) loved, fostered and adopted many children over the years. And Val understood first hand the need for families to have support and a place to talk through arising issues.

FASlink online began as a FASD discussion forum in 1995, founded by Val Surbey and the Canadian Centre for Substance Abuse (CCSA). CCSA is funded by the beverage alcohol associations and The Public Health Agency of Canada. FASlink evolved from being an academic forum for professionals to include dedicated parents and caregivers of individuals. These parents shared the reality of day-to-day living with the professionals, who in turn shared their knowledge to help parents move forward. It was a brilliant community that worked together.

Val and I became online friends and from a distance of 1200 miles and we helped each other raise our special children

In 1999, CCSA ceased to fund the FASlink discussion forum. FASlink was merged with the Fetal Alcohol Support Network website and the combined name became FASlink Fetal Alcohol Disorders Society.

  • The FASlink Discussion Forum compiles the papers and discussions into the FASlink Archives. Our membership is worldwide but most are in Canada and the USA, from the most remote locations to urban centers.
  • International FAS Day was founded by FASlink members who joined forces because of the love and efforts of  Val Surbey. Val worked hard to get the word out and field questions and discussion with parents Teresa Kellerman, Bonnie Buxton, and Brian Philcox.
  • FASlink was the communications network. The first international events were on September 9, 1999, beginning in New Zealand and working around the world at 9:00 local time, heralded by church bells ringing and public displays. FAS Day has grown every year.

This is a major legacy initiated by Val Surbey. Val continues to advocate for persons with FASD and make a difference in their lives.

Tragically, her son, Christopher who had FASD, while in treatment under the temporary care of Manitoba’s Family Services, was murdered at age 17. So much heartache, and Val continued to help others and make a difference for persons with FASD. (Read more)

This is the memorial Val’s beloved husband, Vince,
wrote and read at Chris’ service on June 8, 2005

Christopher,
you came to us as a little boy, just over two years old;
blond, curly hair, huge blue eyes and a big smile.
And we loved you immediately.

You started school and it did not go well,
as they did not seem to understand you.
And we loved you still.

Constable Edward Finney school appeared
and while you were there,
aside from some problems
you grew and learned and flourished.
And we loved you still.

You started the next level, middle school,
but once again they didn’t understand you.
You became a “problem” to them.
But we loved you still.

Five years ago we realized that in order to help you
we would have to share you with others
that could open doors closed to us.
We would have to part.

And because we loved you still,
you went to care, a new school, a new beginning.
Marymound agreed to have you as their student
and you flourished.
You grew stronger and were happy.
And we loved you still.

A new high school loomed ahead and you started fairly well,
but you soon decided it wasn’t for you,
so you slowly withdrew.
And we loved you still.

TRY programs, Benders Muffler, Dan’s Landscaping;
all good efforts by wonderful and caring people,
but your staying power waned and you left them one by one.
And we loved you still.

Independent Living was begun with its own problems and restrictions.
And we loved you still.

On June 6, 2005 you left us suddenly.
On June 8, 2005 we said goodbye.
And we love you still.

Today we all say goodbye and we share our love of you.
You are safe in the arms of our dear Lord who loves you always.
And we love you still.

The systems let Christopher down. There is no system for him in our society. There is no system for others like Chris in our society. There are no safeguards for our kids and they are often thrown on the mercy of the community and expected to know how to live within that community without supports. Chris had some supports, but when he turned 18, those would have been pulled. We had been told that. We had also been told that he had more supports than was traditionally given to kids when they are transitioning to adulthood. That amazed me, seeing as Christopher had diagnosed disabilities and surely would have qualified for something. But, he qualified for nothing.

Subsequently, her husband, Vince, became seriously ill and died. And she continued to pour out love to others. Since then, one of her children has been in the fight of his life against leukemia. She continues to rise above life challenges that would crush many. For many years, she has also been very active with the Canadian Association for Community Living.

Val Surbey, states. “We had gone there because no therapy would touch us unless we had him in a voluntary placement agreement with Child and Family Services. That’s what we did to access treatment with an agency that basically touted themselves as having lots of experience with FASD, but they’d never coped with anybody like Christopher before,” she said.

Christopher didn’t look like he had FASD. He spoke well, and showed none of the common facial markers such as a flattened nose or small eyes.

There is still much work to be completed in our future to change outcomes and create opportunities for purpose and success. I am honoured to call Val Surbey “friend”. – Bruce

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TOMORROW MEET DR. ANN STREISSGUTH
WHOSE WORK HAS HELPED TENS OF THOUSANDS OF PERSONS WITH FASD HAVE A BETTER LIFE

 

FASLink We Are No Longer Alone

Red Shoes Rock honors the FASD pioneers –
Bruce Richie – Thank you!

Bruce-Ritchie

We are honored to share Bruce’s story.

Red Shoes Rock Thanks YOU!

Motorola-International-3200
Two years before the Motorola International 3200 launched Bruce had begun a database of FASD information. Mind you, the mobile device above was the first digital hand-size mobile telephone. It took 5 hours to charge, and offered 8 hours standby and 1 hour talk time.

We are grateful to the innovation, engineering, and connectivity our community gained through the mind and heart of Bruce Richie. Bruce was one of the founding directors of the Fetal Alcohol Support Network in Hamilton, ON in 1990. People came from as far as 150 miles for the monthly meetings. They eventually started their own local groups.
During this time, he spent thousands of hours archiving every bit of FASD information he could glean from around the world, and he built it into a free-form database. THAT WAS BEFORE INTERNET and TWO YEARS BEFORE THE PHONE ABOVE ENTERED THE MARKET!

When the Internet became available in 1995, Bruce built the FASN website for all the information. Val Surbey, another parent, and advocate, convinced CCSA (Canadian Centre for Substance Abuse) to sponsor an online discussion forum/listserve. They did so believing it would be primarily used by professionals and academia. Instead, it rapidly became the communications network for a bunch of very dedicated and frustrated parents around the world.

In 1998, we were discussing a possible class action lawsuit against the beverage alcohol industry. Since CCAS is funded heavily by the booze industry, all of a sudden FASlink’s funding was cut off, and they tried to bury it.

Bruce shares, “Like an idiot, I figured it would not be difficult to find alternate funding, and I offered to take it over and finance it until a new sponsor could be found.”

CCSA eventually allowed Bruce to take over Faslink. They provided the mailing list, and since the software was free public domain software, he had to get his own copy. So, in April 1999, Bruce received the mailing list, bought two servers, installed the software and went only.

One server was used for the listserve, and the other was used for the website. As I was now living in Sarnia, ON, with the agreement of the FASN members and Faslink members, the site was renamed as Faslink Fetal Alcohol Disorders Society. I have covered about 80%+ of the costs personally since then along with the help of a small group of members, including Peggy Seo Oba. FASlink never instituted a member fee. The vulnerability of the members desperate for connections and resources often had limited funds. Bruce states, “All of us benefited from each other. I may have put in the finances and the thousands of hours, but all the thousands of people in our FASlink community of caregivers, parents, and professionals helped me raise my son, David, into a fine 28-year-old. Bruce is a single adoptive father, his son was diagnosed with FASD as an infant.

The first FAS Day was September 9, 1999, and the lines of text between countries buzzed with ideas and sharing. Together, we pulled off 9.9.99 starting in New Zealand at 9:09 am with a Bell Concordance, and Bells rang out around the world for the next 24 hours. Ringing out warning. Announcing we were stepping out together to change the face of FASD for the future.

The connections between Pioneers Bonnie Buxton, and Bruce Philcox, and Teresa Kellerman, the development of FASDay and FASworld and the other parents around the world happened because a man dared to step out to make FASLink – this first event happen. – this first event happen.

FASlink serves more than 400,000 people annually through this website and the Discussion Forum. The FASlink Archives provide access to more than 130,000 documents on FASD related issues. Bruce Red Shoes Rock thanks you!

FASlinkCDcase

The CD to the right is available for $20 it contains a wealth of information from the FASlink files. Funds go to continuing this critical work.

In 2007, Bruce led the Great FASD Horseback Ride and Trek Across Canada, from Halifax to Victoria – 4 months under canvas. His son, David joined him for the Sarnia to Victoria part. The lead rider from Halifax to Toronto was Steve Thomas, and the event co-ordinator from Halifax to Ottawa was Claudia Julien. We also thank all these other committed pioneers.

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TOMORROW WE MEET VAL SURBEY. The dynamo behind the concept of FASLink – a discussion group that allowed persons isolated parents and caregivers connect to help build strategies in living, loving and laughing in the FASlane of FASD.

Woman Pours Love into Life with FASD

Red Shoes Rock honors the FASD pioneers –
Teresa Kellerman – Thank you!

A one-woman, Little Engine That Could, created ripples that affected caregiving and FASD in a positive light for the past 20 years.

Teresa KellermanTeresa Kellerman —is a certified FASD trainer for the National Association of Drug Court Professionals, the Native American Alliance Foundation, The Arc, and SAMHSA’ FASD Center for Excellence. Her personal experience and success as a parent, her extensive knowledge of current research, and her unique incorporation of original materials such as skits, poems, and props have made her a top-rated speaker. Her websites, of which there are many, are some of the most extensive available to parents interested in research, ideas, and strategies to help the person they love. Her websites boast visits of over 50,000 people a month. Her YouTube is Baby Born Free.

Teresa has an extensive library of articles. She has designed presentations on prevention, awareness, education, and intervention of FASD. She has been a tireless advocate, and we appreciate her creativity and knowledge shared to help so many other individuals. Teresa provides support and information for families, consults with professionals, trains foster parents, and facilitates support groups for birth mothers, adoptive parents, and caregivers. Teresa has been called the Queen of FASD Acronyms. 

Some of our favorite work of Teresa Kellerman includes:

The Birth of FASDay: The Real Story

By Teresa Kellerman August 2005

(Shared from FASDay.com) where you can discover all sorts of excellent information and materials to help you build your own local campaign.

The official version of how it all began
(according to the Senate Congressional Record):

In February 1999, Bonnie Buxton and Brian Philcox of Toronto, Canada and Teresa Kellerman of Tuscon, AZ, all parents of fetal alcohol children, asked each other a question.

The question was,What if a world full of fetal alcohol parents all got together on the ninth hour, of the ninth day of the ninth month of the year and asked the world to remember that during the nine months of pregnancy a woman should not drink alcohol?” They asked, “Would the world listen?”

This simple question launched a worldwide, grassroots movement, organized on e-mail list serves and on the World Wide Web to ask that communities everywhere observe Fetal Alcohol Syndrome Awareness Day on September 9. The first  International Fetal Alcohol Syndrome Awareness Day, or FASDAY as it is known, was celebrated on September 9, 1999. In the ensuing years, the number of communities observing FASDAY has grown and grown.

What actually happened (according to the fly on the wall who heard it all):

In October of 1998, Bonnie Buxton and Brian Philcox escaped the brisk chill of autumn in Toronto, Canada, and traveled to sunny and warm Tucson, Arizona, where they met with Teresa Kellerman, director of the FAS Community Resource Center. Bonnie asked Teresa, “What if the three of us started an international organization to raise awareness about fetal alcohol issues around the world?”

Teresa responded, “What! Are you crazy? I’m having enough trouble just raising awareness here in Arizona. It’s just too big a plan. We can’t do that.”

Undaunted, Bonnie replied, “Yes we can! I’ll draw up the paperwork, and you put it out there on the Internet. Okay?”

“Okay!”

And that was the beginning of FASworld, which in turn gave birth to FASDAY, an idea that originated with Brian Philcox while he was shoveling snow.

Bonnie chose 9/9/99 to remind everyone that a woman can remain alcohol-free for all nine months of pregnancy and selected 9:09 for a moment of silence.

Teresa spread the word on the Internet, and the first International FAS Awareness Day was celebrated on 9/9/99 at 9:09 all around the world. Activists in small rural communities and large metropolitan cities eagerly communicate by mail list and share new information and exciting ideas through the website www.fasday.com.

In the ensuing years, hundreds of crazy but beautiful people in communities in every time zone volunteer their time and energy to organize FASDAY activities, where parents and professionals alike join forces in this phenomenal grassroots movement that now involves thousands of participants. Is the world listening? We think so! The FAS Community Resource Center that provides the majority of the information for FASDAY activists has 50,000 people each month visit its web pages that contain a wealth of information on research, prevention, and intervention of fetal alcohol issues. Parents, professionals, teachers and students alike visit the popular website to educate themselves and to share information with others by downloading the hundreds of articles and handouts available there.

The FAS Center web site can be found here  If you would like to join the excitement of raising awareness about Fetal Alcohol Spectrum Disorders, or want to learn more about FASD, please visit one of the above websites. You will find books and bracelets and “Fasknots” and Smarties cards and lots of fun and easy ideas to make FASDay a success in your community.

Some more great links from Teresa Kellerman’s great website:

Facing Judicial Issues – Ideas from Teresa Kellerman

Bruce-RitchieTOMORROW YOU WILL MEET THE MAN BEHIND THE INTERNET SCENES THAT MADE FASDAY POSSIBLE – Bruce Richie

It really is a thrill to be part of this fantastic worldwide movement! Join us today!

 

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Celebrating 21 Years of FASday

Red Shoes Rock honors the FASD pioneers –
Brian Philcox and Bonnie Buxton – Thank you!

Parents create first international grassroots movement to celebrate awareness of Fetal Alcohol Spectrum Disorders September 9, 1999 at 9:09 am.

Our first three pioneers are the founders of FASWorld, Bonnie Buxton and Brian Philcox and the developers of International FASDay, Teresa Kellerman, Bonnie Buxton and Brian Philcox.

Brian Philcox and Bonnie Buxton - FASD PioneersBrian Philcox —is a career communicator, and has worked in government, academia and the private sector. In 1999, Buxton and Philcox created FASworld Canada, a not-for-profit organization which provides a support group for parents in the Toronto area, gives workshops and FASD training for parents and professionals, and consults to families across Canada and worldwide. Last year, Brian lit up Toronto in Red for International FASDay. He continues to be an international advocate.
Hope-Love-Joy-Mom
Hope-Love-Joy-MomWe honor Brian’s work also with the LOVE – JOY – HOPE – MOM  Brian your FASDAwareness Campaign is brilliant! Posters available for purchase.

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TO ORDER DAMAGED ANGELS

Bonnie Buxton — is a now retired journalist, editor, and screenwriter whose articles have appeared in numerous Canadian magazines and newspapers. Her book about FASD, “Damaged Angels,” was published in Canada (Knopf, 2004) and in the U.S. (Carroll & Graf, 2005). Trust your crazy ideas,” says a sign on Bonnie Buxton’s bulletin board. Along with her husband, Brian Philcox, Buxton came up with the idea of International Fetal Alcohol Syndrome Awareness Day (FASDay) in January 1999.

“We were digging out our cars from the great Toronto snowstorm,” Buxton recalls. “Warming up over coffee, we realized that on 1999-09-09, a whole lot of nines would be coming together. What about using that date to remind the world that during the nine months of pregnancy, a woman should not drink alcohol?”

Check out Create a Support Group on Bonnie and Bruce’s website.

Teresa Kellerman

AND TOMORROW YOU WILL MEET
TERESA KELLERMAN!!!!
She is one of the most dynamic parent pioneers we know!

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Meet Val – #12 of 90 Real People with #FASD

FASD WITH HOPE

MEET VAL – I’m sober since 2005. And despite losing all my family I have maintained my sobriety…I trusted professionals and still do and today “Thanks to professionals, I can help others in many ways….I encourage people…I continue to look for a brighter side to life.

MY STORY – I am a 57 year old woman having FASD will challenge myself this Sept to go back into the military and train our young cadets…despite my FASD.

STRENGTHS – “I NEVER GIVE UP ON ME.”

STRUGGLES – Struggles started when I was 3 right until sept 2005 —between foster homes and failing in school, failing with friends , failing in my jobs, relationships and even being a parent . All areas of my life where a big huge puzzle that I had no clue how to begin. Thanks to some time in the army and professionals they helped me heal and…

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Meet Christopher – #46 of 90 Real People. Real Lives. #FASD

FASD WITH HOPE

MEET CHRISTOPHER – I am passionate about music: creating, discovering and sharing the positive benefits it has for people with developmental disabilities, especially those with an FASD diagnosis. I am fascinated with the brain, how it works and how music effects it. I love animals, museums, go karts, theatrical epicness.

 MY STORY:

There I was
Standing there.
No fear.
No nervousness.
I remember…I could see everything
Then..

I jumped

I was six years old when I picked myself up off the ground. I had hurt my ankle, nothing more. Nobody had noticed I had jumped off the roof of the mobile home I lived in. The very place of which I had already been exposed to things no six year old (or any child) should know, see and experience. I learned fear, cowardice, abandonment and how to run. I failed to thrive and lived in the foster care system from…

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Meet Tisha – #44 of 90 Real People. Real Lives. #FASD

Thank you Tisha for being another adult standing up to build awareness and knowledge for the little ones coming behind you.

FASD WITH HOPE

Mac got really excited when Tisha decided to run with us! She is from South Africa – so on his way around the globe he stopped by to pick her up.

MEET TISHA – Tisha is 20. She came into our family at 10 weeks old as she was abandoned at birth. She was a premature baby with a lot of challenges and wasn’t expected to live more than a few days after she came to her family.

MY STORY – I am 20 and had to attend special needs school. I have a full-time job that I love and have friends. I like watching YouTube. I cannot read or write or do numbers. I have difficulty remembering.

STRENGTHS – I like people and I am friendly.  I have a full time job. I try my best. I talk about FASD to warn women about drinking alcohol when pregnant.

STRUGGLES…

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Meet Vicky #30 – 90 Real People. Real Lives. #FASD

FASD WITH HOPE

We are doing this Vicky and TODAY is your day — You are runner number 30 – Thank you so much for sharing your story and stepping out to run with Mac!

MEET VICKY – I grew up in the foster care system and no one talked about FASD openly so I did not get much intervention until I was an adult. That is very sad as so often I did not know what was going on and became angry. As I grew older I found people who wanted to learn about my challenges and help me. I’m so grateful for that.

MY STORY – I am not sure when I was diagnosed but I was in foster care from when I was 18 months old till I was 18. Back then FASD wasn’t something anyone openly spoke about so I didn’t get much intervention. I grew up being a…

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Meet Chanel – #42 of 90 Real People. Real Lives. #FASD

FASD WITH HOPE

My name is Chanel Torres. I was born with FAS.

My mission is to help those who are living and dealing with FAS and to stop FAS in unborn babies.

To do this, I spend my free time giving presentations at local schools, hospitals, Juvenile Detention Centers, nursing programs and many other facilities. I educate as many people as I can on FAS and to give them a chance to get to know me and my struggles and to help spread the word about FAS. I have received many awards and certificates of appreciation for my hard work in delivering my message. These awards are great, but the biggest award I can get is to know my message is being delivered and helping many people and unborn babies out there.

When I made the decision to talk about FAS I was so excited because my goal in life is to…

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