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A Conference for Us. Barbara M. Wybrecht FASD Clinical Nurse Specialist with assistance from Rob Wybrecht FASD Expert Panel Member. How It All Began. Why can’t there be a conference for people like me, people with FAS (or another FASD)?. A Conference in a Camp Setting. Not a camp

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A Conference for Us

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A Conference for Us

Barbara M. Wybrecht

FASD Clinical Nurse Specialist

with assistance from

Rob Wybrecht

FASD Expert Panel Member

How It All Began

Why can’t there be a conference for people like me, people with FAS (or another FASD)?

A Conference in aCamp Setting

Not a camp

Not just for fun

Primary Goals

  • Increase understanding of the brain differences caused by prenatal alcohol exposure

  • Decrease sense of isolation

  • Improve self-advocacy skills

  • Decrease risk of developing secondary disabilities

Our first and foremost concern is that of safety and comfort.

A support person will accompany each person attending the conference.

Important ConsiderationsEverything We have Learned and Experienced about Persons with an FASD

Individuals who are friendly, talkative, caring, and want to please

Individuals who may process more slowly, needing fewer but more concrete words

Individuals who may have challenges regarding impulse control

Individuals with a shorter attention span,

who need hands on concrete visual aides

Individuals with memory problems who often

need pre- teaching, teaching, and then


Planning Committee

  • Over 50% of the members were individuals with an FASD

  • Met monthly for ten months, then

    bi-monthly, then weekly for last month

  • Decisions were made by consensus, rather than by a vote, as much as possible

  • An in depth site visit to the camp was a necessary first meeting, photos were taken

Plenary Sessions

  • What is the Federal Government Doing to Help?

    Dr. Faye Calhoun

  • What is Different About My Brain?

    Dr. Ed Riley

  • WE can Prevent FAS, Role Play Demonstration

    Dr. Karla Damus, Kathy Walz

Plenary Sessions Continued

  • What Communities and States Could Do

    to Help You and Your Family

    Dr. Ann Streissguth

  • Supported Employment

    Marsha Katz


Sharing My Good Ideas About Living with FAS

A panel of four, Tony Kezenius, Karyann Clark, Shaun Notten and Mary Van Swol, facilitated by Dr. Jacquelyn Bertrand from the CDC

What To Do If You Are Stopped by the Police

Presented by Rob Wybrecht facilitated

by Dr. Karen Stern JD, Office of Juvenile Justice

Workshops continued

Job Success – What Helps and What Hurts

A panel, Mellissa Clark, Cindy Gere,

John Kellerman, facilitated by Marsha


What to Do with the Mad That You Feel?

Libby Robold, Mary Van Swol, Ben Brewer

Phone Interview

  • Establish a relationship

  • Develop an understanding of camper and

    and advocate, individually and as a diad.

  • Avoid surprises for all, as much as possible

  • Clarify expectations of attendees

  • Clarify expectations of conference planning committee and camp staff

Interview by Phone withCamper and/or Advocate

  • Does the camper want to attend?

  • What is his/her current living circumstance?

  • Do the advocate and camper trust each other?

  • Will the camper be able to abide by these


  • Will the advocate be able to abide by these rules?

  • Is there a mental health diagnosis?

  • Has the camper been in trouble with the law?

You and Your Buddy are a Team

  • Attending activities together

  • Discussing information presented by the speakers

  • Sharing a cabin

  • Having fun together

    Don’t lose sight of each other.

Additional Safety Precautions

  • Monitors in twos, checked the camp grounds

    after lights out, called in if any concerns

  • Camp Staff were alerted to the special needs

    of our group

  • Special precautions were taken related to the

    horses. Each participant enjoyed the horses

    according to their comfort level

  • Smoking on the camp grounds was not


If you would like assistance in working with teens and young adults to plan their conference

Call or Write

The Wybrechts



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