Virginia Isaacs Cover is the author of the new novel Supplemental Needs. She also has written the book Living with Klinefelter Syndrome, Trisomy X, and 47,XYY. A social worker, she works with adults and children with developmental disabilities. She lives in the Washington, D.C., area.
Q: What inspired you to write Supplemental Needs, and how did you create your character Rachel?
A: I was inspired to write a story about a young child with a disability and the process of the parents adjustment to disability by the novel by Saira Shah, The Mouse-Proof Kitchen. It was a fictionalized account of life with her own profoundly neurologically challenged daughter.
No one had ever written about the experience of a prenatal diagnosis of a child with an X/Y chromosome disorder, my own son’s genetic condition. As Ms. Shah did, the character of the mother, Rachel, is loosely based on my own life, with lots of literary license.
Q: How was the book’s title chosen, and what does it signify for you?
A: A supplemental needs trust is the financial instrument that parents use to set aside funds for their child that will not disqualify them for government benefits, such as SSI or Medicaid, that they will need in the future.
Supplemental needs also signify the extra efforts and complications of parenting a child with special needs, especially when their condition is stigmatized.
Q: Did you know how the story would end before you started writing it, or did you make many changes along the way?
A: When I write, I construct a detailed outline, so I had a good idea about the progression of the story. Of course, that got revised along the way, but the general progression was followed.
Q: What do you hope readers take away from the novel?
A: I would like readers to consider the burden we place on expectant parents by ever increasing rates of prenatal screening. There are inadequate numbers of knowledgeable genetic counselors to guide them through decision making after these findings, particularly with common and highly variable conditions like sex chromosome aneuploidy.
I also want readers to gain an understanding of these conditions, as well as the harm to these families done by the continuing and untrue myths associating XXY and XYY with aggression and criminality.
Q: What are you working on now?
A: I am beginning the process of updating the guide that I wrote in 2012, Living with Klinefelter Syndrome, Trisomy X, and 47,XYY. There has been so much additional research as well as clinical resources established for these families and individuals. The updated guide needs to reflect this new knowledge.
--Interview with Deborah Kalb
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