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

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How It All Began

• Why cant there be a conference for people
  like me, people with FAS (or another FASD)?

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A Conference in aCamp Setting

• Not a camp
• Not just for fun

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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

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• Our first and foremost concern is that of safety
  and comfort.
• A support person will accompany each person
  attending the conference.

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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

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• 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
• re-teaching

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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

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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

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Plenary Sessions Continued

• What Communities and States Could Do
• to Help You and Your Family
• Dr. Ann Streissguth
• Supported Employment
• Marsha Katz

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Workshops

• 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

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Workshops continued

• Job Success What Helps and What Hurts
• A panel, Mellissa Clark, Cindy Gere,
• John Kellerman, facilitated by Marsha
• Katz
• What to Do with the Mad That You Feel?
• Libby Robold, Mary Van Swol, Ben Brewer

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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

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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
• rules?
• 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?

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You and Your Buddy are a Team

• Attending activities together
• Discussing information presented by the speakers
• Sharing a cabin
• Having fun together
• Dont lose sight of each other.

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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
• permitted

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

• Call or Write
• The Wybrechts
• 616-241-9126
• bmwybrecht_at_aol.com

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