RAISING JESS

A mother describes raising a child with special needs in this debut memoir.

On April 11, 1982, on Easter Sunday in Buffalo, New York, Rubin gave birth to her daughter, Jess, while suffering from chicken pox herself. She was forced to isolate from her newborn child until her illness had passed. At first, pediatricians assured Rubin and her husband, Mitch, that their daughter was developing normally, but the author notes that Jess had “unusual facial features and other anomalies.” Jess was later found to have multiple developmental disabilities resulting from a chromosomal disorder, although Rubin struggled for years to receive an accurate diagnosis. The author describes her initial drive to understand and “fix” Jess’ condition; she records key moments, such as her daughter’s bat mitzvah and her entry into the special education process. Rubin also relates her own career path, which led to her becoming the director of the Early Childhood Direction Center at Buffalo Children’s Hospital in 1998. The memoir concludes with Rubin and her husband visiting Jess, now in her 30s, in her group-home community during the Covid-19 pandemic and the heartache they felt when they had to distance from their daughter. Rubin is a forthright author who addresses topics that other parents of children with multiple disabilities will find stimulating, as when she explores the significance of getting Jess’ diagnosis: “The revelation did not change therapies or even medical care, but it gave a name and identity to the various symptoms and beauty that describe Jessica.” The author’s approach is also courageously exploratory, as when she investigates how Jess’ siblings were shaped by growing up with her. Throughout, Rubin shares a wide range of material, including family photographs and even the invitation to Jess’ bat mitzvah. Some readers may feel that some of this is unnecessary and makes for an overly cluttered memoir, but others will think it makes Jess’ story feel all the more personal. Overall, Rubin writes with clarity and thoughtful introspection, making for a truly enlightening read.

A frank, perceptive, and insightful remembrance.