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Handbook for Parents

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Handbook for Parents Contributors Cassandra L. Aspinall, MSW, LICSW Christine Feick, MSW Craniofacial Center, Seattle Children’s Hospital; Ann Arbor, MI University of Washington School of Social Work, Seattle, WA Sallie Foley, LMSW Certified Sex Therapist, AASECT; Dept. Social Arlene B. Baratz, MD Work/Sexual Health, University of Michigan Medical Advisor, Androgen Insensitivity Health Systems, Ann Arbor, MI Syndrome Support Group, Pittsburgh, PA Joel Frader, MD, MA Max & Tamara Beck General Academic Pediatrics, Children’s Atlanta, GA Memorial Hospital; Dept. Pediatrics and Program in Medical Humanities & Bioethics, William Byne, MD Feinberg School of Medicine, Northwestern Psychiatry, Mount Sinai Medical Center, New University, Chicago, IL York, NY Jane Goto David Cameron Board of Directors, Intersex Society of North Intersex Society of North America, San America; Board of Directors, Androgen Francisco, CA Insensitivity Syndrome Support Group, Seattle, Anita J. Catlin, DSNc, FNP, FAAN WA Nursing and Ethics, Sonoma State University, Michael Grant Sonoma, CA Lansing, MI Cheryl Chase Janet Green Founder and Executive Director, Intersex Society Co-Founder, Bodies Like Ours; Board of of North America, Rohnert Park, CA Directors, CARES Foundation; Board of Kimberly Chu, LCSW, DCSW Overseers, Beth Israel Hospital; Board of Department of Child & Adolescent Psychiatry, Trustees, Continuum Healthcare, New York, Mount Sinai Medical Center, New York, NY NY Howard Devore Philip A. Gruppuso, MD San Francisco, CA Associate Dean of Medical Education, Brown University; Pediatric Endocrinology, Rhode Alice Dreger, Ph.D. (Project Coordinator and Island Hospital, Providence, RI Editor) Program in Medical Humanities and Bioethics, William G. Hanley, BPS Feinberg School of Medicine, Northwestern Memphis, TN University, Chicago, IL iii iv Debora Rode Hartman Charmian A. Quigley, MBBS Board of Directors, Intersex Society of North Senior Clinical Research Physician, Lilly America, Swedesboro, NJ Research Laboratories, Indianapolis, IN Ginny Hayes, CMA William G. Reiner, MD Androgen Insensitivity Syndrome Support Dept. Urology/Sect. Pediatric Urology, Dept. Group, Hampton, VA Psychiatry/Sect. Child & Adolescent Psychiatry, University of Oklahoma Health Sciences Center, April Herndon, PhD Oklahoma City, OK Intersex Society of North America; Gustavus Adolphus College, St. Peter, MN Patricia Roberts Los Angeles, CA Thea Hillman Oakland, CA Aron C. Sousa, MD General Internal Medicine and Associate Dean Colleen Kiernan for Academic Affairs, College of Human Intersex Society of North America, Chicago, IL Medicine, Michigan State University, East Dixie Korlutis, RN Lansing, MI Crouse Hospital, Syracuse, NY Herberta Smith, RN, PNP (retired) Esther Morris Leidolf Kissimmee, FL Founder and President, MRKH Organization; Collin Stoll The Fenway Institute, Fenway Community Portland, OR Health, Boston, MA Cindy Stone Ana M. Lippert Bloomington, IN Peoria, IL Peter Trinkl Angela Moreno Lippert Berkeley, CA Chair of the Board, Intersex Society of North America; Androgen Insensitivity Syndrome Eric Vilain, MD, PhD Support Group, Coupeville, WA Pediatrics/Urology/Human Genetics, David Geffen School of Medicine at UCLA, Los Iain Morland, MA, MPhil, PhD Angeles, CA Cardiff, UK Michael Walker Lynnell Stephani Long Founder, Hypospadias & Epispadias Association, Chicago, IL Point Reyes, CA and Auckland, New Zealand Bev Mill, RTR (retired) Roz Weiss Androgen Insensitivity Syndrome Support Stamford, CT Groups of Western Canada and Australia, Nelson, BC, Canada v Nina Williams, PsyD Deptartment of Psychiatry, Robert Wood Johnson Medical School; Institute of Psychotherapy and Psychoanalysis of New Jersey, Highland Park, NJ Bruce Wilson, MD Pediatric Endocrinology, DeVos Children’s Hospital, Grand Rapids, MI Contents Welcome to Parents ................................................................................................... 1 You Are Not Alone! ................................................................................................................... 3 What Are DSDs? ....................................................................................................................... 3 What Causes DSDs? ................................................................................................................. 4 Acceptance Takes Time .............................................................................................................. 5 Speaking About Shame, to Try to Get Beyond It ....................................................................... 6 Helping Yourself to Help Your Child ......................................................................................... 7 Secrecy=Shame, Honesty=Acceptance ....................................................................................... 9 Take-Home Messages of This Chapter .................................................................................... 11 Your Child’s Development, and How to Talk with Your Child ................................ 13 About the Language Used Here ............................................................................................... 13 Key Background Points ........................................................................................................... 15 Ages 12-36 Months ................................................................................................................. 16 Ages 3-5 Years (Pre-Schoolers) ................................................................................................. 19 Ages 6-11 Years ....................................................................................................................... 26 Puberty ................................................................................................................................... 31 Adolescence (11-18) ................................................................................................................ 32 Your Life Together ................................................................................................................... 36 Take-Home Messages of This Chapter .................................................................................... 37 How to Talk with Others ........................................................................................ 39 Introduction ............................................................................................................................ 39 What to Tell Your Friends and Family in General .................................................................... 40 If Your Newborn’s Gender Assignment is Delayed ................................................................... 41 What to Tell People Who May Think DSDs are Sinful ........................................................... 42 vii viii Contents Tips on Interacting with Teachers and Daycare Providers ........................................................ 44 Talking with Your Child’s Medical Care Providers ................................................................... 46 Take-Home Messages of This Chapter .................................................................................... 51 Answers to Common Questions .............................................................................. 53 Helpful Handouts ................................................................................................... 67 About Disorders of Sex Development (DSDs) ......................................................................... 68 How Genital Development Happens ...................................................................................... 71 Things to Do and Things to Avoid .......................................................................................... 74 Preparing for a Medical Appointment ..................................................................................... 75 Record-Keeping and Journaling ............................................................................................... 77 Thoughts from Fellow Parents and from Adults with DSDs .................................... 79 Introduction to This Material .................................................................................................. 79 Letters from Fellow Parents ..................................................................................................... 80 Memories and Thoughts from Adults with DSDs ................................................................... 88 ................................................................................................................................................. 97 Other Resources (Where to Learn More) ................................................................ 99 Websites .................................................................................................................................. 99 Support Groups and Diagnosis-Specific Information ............................................................. 100 Finding a Child Psychologist ................................................................................................. 101 Books Devoted to DSD Issues ............................................................................................... 102 Videos and Television Broadcasts ........................................................................................... 103 Journal and Magazine Articles ..............................................................................................
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