A Conversation with Ginnie Cover, Author/Advocate for Those with Disabilities and Their Families

Virginia (Ginnie) Isaacs Cover has worked throughout her career with children and adults with complex medical conditions and developmental disabilities. She is an advocate for those with disabilities and their families and published a widely read guidebook for those affected by X and Y chromosome variations. She explores the impact of a prenatal diagnosis on a young family in her new book, Supplemental Needs: A Novel. Ginnie became a “special needs parent” when her younger son was diagnosed prenatally with 47,XXY, also known as Klinefelter syndrome. Although sex chromosome aneuploidy (SCA) is more common than Down syndrome at an estimated 1 in 400 live births, it is recognized and properly diagnosed in fewer than 25 percent of the affected population. She became a passionate advocate for families affected by disabilities, including the X and Y chromosome variations, and provides educational programs for families and professionals who work with this population. In 2012, she published Living with Klinefelter Syndrome, Trisomy X, and 47,XYY. The book provides clear explanations of the genetics involved, as well as diagnosis, disclosure, development from infancy through potential health and fertility issues, and educational and psycho-social considerations. This guidebook has helped thousands of people grow their understanding of this condition. She believes it is equally important for literature to cover the emotional impact that prenatal testing has on parents while also improving early identification of X and Y chromosome conditions. She felt this could only be done through the sharing of stories. Her goal in writing the novel was to explore the impact of a prenatal genetic diagnosis on a young family who decides to continue a pregnancy despite a medical geneticist’s advice. Supplemental Needs: A Novel portrays a young family whose lives change on learning through prenatal genetic diagnosis that their baby will have Klinefelter syndrome, most likely causing some degree of disability, as well as infertility and possible sexuality issues. In this episode, Ginnie speaks about prenatal counseling; termination of pregnancy when chromosomal variations exist; societal acceptance of KS, the neurodiverse, LGBTQ individuals and how it has changed over time; and attitudes in Judaism toward LGBTQ individuals and why these are so different across the branches (Reform, Conservative, Orthodox) Supplemental Needs incorporates accurate information and creates needed conversation around what we each believe about continuing a pregnancy where there may be some level of disability, or when there may be a slightly elevated rate of homosexuality, or of gender dysphoria. Readers gain greater awareness and understanding about the parental experience of when a child is not following a typical developmental trajectory, familiarizing the public with sex chromosome aneuploidy in a non-sensational manner. "I want readers to experience the sadness, fear, and hopefulness felt by [the characters] as they wrestle with the choices that must be made, and the impact they have on their son, and their family," Ginnie says. "Through the characters and events, readers will also confront the research suggesting that sexual orientation and identity may be heavily influenced by DNA." Ginnie lives in the Washington, D.C., metro area and has two adult sons and three grandchildren. She volunteers through her synagogue for the Interfaith Refugee Support group. She also is a board member for L’Arche Long Island, a non-profit agency providing housing for adults with developmental disabilities, vocational and life skills training. Ginnie holds a Master of Social Work degree from the University of Michigan. Learn more at VirginiaCover.com https://www.facebook.com/virginia.cover