URLEND Leadership Project: Experiences & Reflections

1. URLEND Leadership Project:Experiences & Reflections Helen Aoki Leyla Faize Maryanne Jaconis Bethany Rigles April 20, 2012

2. A Sexual Education Timeline for Parents of Children with Disabilities • Project Description: To help parents of children with special health care needs provide appropriate sexual education for their children. • Methodology • Exploratory project • Worked with Healthy Sexuality Parents’ Group in SLC

3. Development of the Timeline • Generated a list of topics dealing with discussing sexuality • Parents from the group chose the top 5 topics that were most interesting to them • Our group took 4 of the top 5 topics chosen by parents to research further • Created the timeline • Topics were addressed chronologically, with notion that parents could access information based on the developmental age of their child

4. Helen’s Chapter • When and how to talk about sexuality • Sexuality is a natural and normal part of human life • Discussions about sexuality should begin early • Remain open to questions and answer matter-of-factly • Children will ask questions as they get older • Answer truthfully • Create a safe place for your child to ask questions • Teach your child to respect self and others

5. Maryanne’s Chapter • Specialized Topic: Masturbation • One of the most controversial topics related to sexuality education • Normal part of growth and development • Similar to learning a language, playing with peers, and receiving proper nutrition • Learning appropriate public and private behaviors • Children do not incidentally learn society’s rules about public and private behaviors • What are effective interventions and support strategies • How to shape behavior

6. Bethany’s Chapter • Discussing public vs. private sexual behaviors • Distinguishing between public and private places and behaviors should start at an early age. • Help kids develop personal boundaries. • Avoid harsh reactions to child’s sexual exploration. • Type and severity of disability affect child’s ability to understand concepts of “public” and “private.”

7. Leyla’s Chapter Sexual Victimization/Abuse • Sexual abuse in female adolescents with physical disabilities is twice as much as their peers with no physical disabilities • General Safety • Symptoms that may suggest sexual abuse • Perpetrators behaviors • Intellectual disabilities and sexual offending behaviors

8. Healthy Sexuality Parents’ Group • Experiences, thoughts, and reflections • Collaborating with professionals from different disciplines from a distance • Doing research based on the clients’ needs and feedback • Having parent perspective kept our project family-centered

9. Project Results & Conclusions • Parents felt information was clear and concise and used language that was non-stigmatizing • Areas for improvement: • Include case studies • Add more disability specific information • Address same sex relationships • Plan to have URLEND group next year develop timeline further and disburse information

10. Maryanne’s Reflections • Well-balanced URLEND experience • Evidence-based educational component • Clinical experience • Most significant learning experience • Reciprocal nature of didactic and clinical experience • Thought provoking conversation during didactic sessions • Leadership Project • Practicing effective communication skills • Establishing expectations & following through

11. Helen’s Reflections • URLEND seminars • Wide variety of topics and speakers • Created awareness of multiple disciplines • URLEND clinics • Explore outside your discipline • Confirm time commitment and patient load prior to clinic • URLEND leadership project • Individual strengths are important • Group dynamics will change throughout

12. Leyla’s Reflections • Include variety of thoughts and opinions on URLEND lectures • Evidence based practice and practice based evidence • Developmental and behavioral approach to ASD treatment • Promote critical thinking in leadership training program • Promote interdisciplinary collaboration and teamwork • Endorse cultural sensitivity and awareness

13. Bethany’s Reflections • Combination of clinical and seminar experiences was very effective • Interest in developing more interdisciplinary clinics in Montana, especially for ASD. • Leadership Group • Great leadership experience to work with an interdisciplinary team over a distance. • Discovered new means of communication. • Greatly enjoyed working with parent group.

14. Suggested Change for URLEND • Follow-up with parents/families participating in PDCs. • As part of each PDC team, one URLEND trainee would take responsibility for following-up with the family that participated. • Trainee would enquire about how the experience was, what was helpful, what aspects could be improved on, etc. • Trainee would share feedback with the group and/or all URLEND trainees. • This change would enhance leadership skills through: • Increased ability for self-reflection about one’s role in the PDC • Increase communication skills both with families and other trainees • Promotion of family-centered care

15. Acknowledgments This project would not have been possible without the support and insight of our faculty mentors and parent participants. We would like to thank Dr. Derezotes, Dr. Peterson, Dr. Terashima, Gina Pola-Money, and Jodi Hansen for their guidance and support on this project. We would also like to thank the Healthy Sexuality Parents’ group in Salt Lake City for including us in their discussions, providing insight and feedback throughout our project, and for serving as a constant reminder that personal knowledge and experience are invaluable when working with children with special needs and their families.