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

BarbWybrect

“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!

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