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A Conference for Us

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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  1. A Conference for Us Barbara M. Wybrecht FASD Clinical Nurse Specialist with assistance from Rob Wybrecht FASD Expert Panel Member

  2. How It All Began Why can’t there be a conference for people like me, people with FAS (or another FASD)?

  3. A Conference in aCamp Setting Not a camp Not just for fun

  4. 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

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

  6. 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

  7. 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

  8. 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

  9. 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

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

  11. 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

  12. 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

  13. 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

  14. 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?

  15. 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.

  16. 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

  17. 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@aol.com

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