Fall and Recovery:
Raising Children with Disabilities through Lessons Learned in Dance
by Joanne de Simone
She Writes Press
Sept 2024, ISBN: 9781647427146, 264 pages
When De Simone became a mother following the end of her dancing career, she experienced the unexpected. Her first son, Benjamin, presented with cerebral palsy, seizures, and a neuronal migration disorder that impeded his ability to walk and talk. Her second son, Sebastian, was diagnosed with a “pervasive developmental disorder not otherwise specified.” The author and her husband, John, navigated the harrowing reality of conflicting diagnoses, various special education placements, and incompetent school professionals. These difficulties were all part of the grief and anxiety that accompanied the daily ups and downs of raising children with low-incidence disabilities. Due to school and placement challenges, the family left their beloved Brooklyn for New Jersey, where they found the educational experiences and community they desired for their family. What’s most evident in the narrative is the love that De Simone and her husband have for their two boys. This memoir affectingly charts the couple’s road to acceptance, illustrating their own challenges as they both see and love their children for who they are. De Simone’s knowledge as both a mother and a special educator adds context to the educational experiences and the medical scenarios, and she authentically conveys the myriad emotions experienced by the parents of children with disabilities. (“Every time I changed Benjamin’s diaper, his intact foreskin reminded me that we didn’t want to change what nature had intended. We saved some skin.”) The narrative also encapsulates what it’s like to feel excluded from the community at large, calling out the societal structures in place that demean people with disabilities. Reflecting on various schools and playgrounds, De Simone observes, “We had every right to be there, but I didn’t feel like we belonged.” Although there are moments when the conceit of dance as a metaphor for parenthood takes away from the story, this memoir serves as an honest depiction of what it’s like to navigate the world as parents of children with significant disabilities.
A moving account of caring and advocating for children with disabilities.
Review first published at Kirkus Reviews.