Frequently Asked Questions
Why is this story so important to you?
I wish there had been this kind of novel when I was faced with these same questions, decisions, and consequences. I looked, there was nothing. After raising our son, I decided to write the story I needed to hear in the hope that I can support another family dealing with the same situation.
Why was it important to explore Klinefelter syndrome and its various challenges as a fictional story?
When I started this project, I gave thought to writing a memoir, but I simply could not imagine being public about my son’s diagnosis given the stigma surrounding it. He was several years out of high school, and living on his own, but still struggling with being able to work successfully enough to support himself. I also did not think I could write honestly about my own emotions following the prenatal diagnosis, or the wrenching experience of having a young child being found to be months behind in development. It was far easier exploring these issues at a distance with a fictional mother and family.
Literature tends to avoid addressing disability, particularly when the character is a child. Writing this as a novel gave me the opportunity to change this.
What do you hope readers learn from your book?
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. Some in the community believe there may be a slightly elevated rate of homosexuality, or of gender dysphoria, although research findings on this are not entirely clear. 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 (SCA’s) in a non-sensational manner..
Bottom line? I want readers to experience the sadness, fear, and hopefulness felt by Rachel and Dave as they wrestle with the choices that must be made, and the impact they have on their son, and their family. Through the characters and events, readers will also confront the research suggesting that sexual orientation and identity may be heavily influenced by DNA.
What is being illustrated by including differing levels of observance of Judaism within Rachel and Dave’s families?
The level of religious observance influences attitudes toward sexuality, regardless of denomination. The more conservative, the less accepting of LGBTQ identities. It was important to provide readers with a religious perspective so Supplemental Needs, attempts to deal with varying levels of conservatism and observance. Dave’s brother Ben and Ben’s partner, Eli, took years to reconcile their sexual orientation with Orthodox Judaism. Ben’s mother, a Modern Orthodox woman, is far more accepting than Eli’s parents, Hasidic ultra-Orthodox Jews, from whom he is estranged. Star, the conservative Catholic mother, is fearful of exposing her son to men who are open about being gay. Dave and Rachel are typical Reform Jews who long ago accepted LGBTQ individuals..
The setting of the novel begins in 2002. This was years before Obergefell vs. Hodges, the Supreme Court decision establishing the right to same-sex marriage. In the twenty years since the initial setting of the novel, there has been an extraordinary change in attitudes toward homosexuality and acceptance of these relationships by more “mainstream” congregations, whether Jewish or Christian.
Why have Klinefelter syndrome (KS) and other sex chromosome variations received so little publicity?
The signs may be subtle and vary greatly from one individual to another. Low muscle tone, speech delay in young children, learning disabilities, ADHD, shyness, poor coordination, or slight body disproportions can all look much like other common diagnoses. Many healthcare professionals still think that a genetic syndrome must be accompanied by dysmorphic facial and other features, but individuals with SCA do not look “syndromy.” Although 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.
Also, the early publicity in the 1970s, primarily for Klinefelter syndrome and 47,XYY, was almost uniformly negative. Based on several biased screening surveys, conducted only in penal and psychiatric institutions, researchers concluded and published articles stating that these tall men were predisposed to aggression and criminal sexual behavior, including pedophilia. Because the institutionalized population was also characterized by low intelligence and intellectual disability, these individuals were also thought to be mentally retarded, even though less than 10 percent of the SCA population has an IQ of less than 70. Although several researchers later concluded there was no valid data supporting the conclusions, the damage was done.
Additional topics to explore with Ginnie:
Prenatal counseling
Termination of pregnancy when chromosomal variations exist
Societal acceptance of KS, the neurodiverse, LGBTQ individuals and how it has changed over time
Attitudes in Judaism and other religions toward LGBTQ individuals and why these vary so across different denominations and levels of observance.