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

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

 

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