Fall and Recovery: Raising Children with Disabilities through Lessons Learned in Dance

by Joanne De Simone

Overview

Special educator Joanne De Simone bears all in this raw and transformative memoir that captures how she used lessons of modern dance in her journey through motherhood with two children with disabilities.

When the pediatrician places the measuring tape around her infant’s head and notes, “His head is a little small,” Joanne knows that motherhood won’t be as she had dreamt. Even as a special educator, Joanne isn’t prepared to raise a child with a life-limiting brain malformation. Nor is she ready for the compounded pain and alienation that comes when her second son is diagnosed with autism. But the struggle to balance her sons’ medical and educational challenges drives Joanne to reconnect with the lessons she learned as a modern dancer—and there she finds enlightenment.

Inspired by her experience performing José Limón’s There Is a Time, based on Ecclesiastes 3, each chapter of Fall and Recovery details a dance lesson and the dichotomy of parenting children with disabilities. Over time, Joanne discovers that surviving motherhood isn’t a matter of strength, bravery, or faith. It’s a matter of linking your past experiences and creating your own purpose. It’s realizing that we live simultaneously in love and grief. In the end, dance teaches Joanne not only how to move freely through pain but also how to fall and recover.

Product Details

ISBN-13:	9781647427146
Publisher:	She Writes Press
Publication date:	09/17/2024
Pages:	264
Product dimensions:	5.50(w) x 8.50(h) x 0.90(d)

About the Author

Joanne De Simone is a graduate of Hunter College with degrees in dance and special education. After dancing professionally with companies including José Limón and Dianne McIntyre, she dedicated her life to teaching children with disabilities and supporting their families. Currently, Joanne is a special education advocate for the Alliance of Private Special Education Schools of North Jersey. Her writing has appeared in the Washington Post, Exceptional Parent Magazine, and the Rumpus, and she is a contributing author to Barriers and Belonging: Personal Narratives of Disability. Joanne lives in West Orange, New Jersey, with her husband and sons.

Editorial Reviews

2024 Nonfiction Book Awards Silver Winner

“A moving account of caring and advocating for children with disabilities.” —Kirkus Reviews

“An unflinchingly honest and beautifully rendered memoir. With breath-taking clarity, the author’s words dance across each page, imbued with love, pain, and heart, as she shares the challenges and joys of raising her two special sons.” —Diana Kupershmit, author of Emma’s Laugh: The Gift of Second Chances

“Joanne De Simone takes the reader on a powerful journey, masterfully weaving lessons learned as a dancer into her experiences as a mother of two children with disabilities. It is beautifully written, heartbreaking, and inspiring. The raw honesty of her storytelling allows the reader to truly understand the complexities of raising children with complicated challenges.” —Jesse Torrey, LAC, MA, author of Smiles & Duct Tape

“A memoir of strength, persistence, and—most of all—love. Parenting is never easy, but, as De Simone discovers, raising two children with disabilities can easily knock a mother down. Gracefully weaving the threads of dance, motherhood, and disability through her remarkable journey, De Simone shows us all how to ‘fall with the direct intention to rise.’” —Karen DeBonis, author of Growth: A Mother, Her Son, and the Brain Tumor They Survived

“Heartfelt and engaging, this memoir of raising children requiring vastly varying degrees of care and advocacy delicately threads blurred, complicated, and demanding lines. With the best parts of quiet compassion, noiseless rage, and complete, unconditional acceptance, Joanne De Simone depicts a specific, sweeping motherhood that soars far above unrelenting daily demands. Through the lens of her foundation in dance, Joanne embraces the gift of the children in her home, not those who once occupied her imagination.” —Lisa Romeo, author of Starting With Goodbye: A Daughter’s Memoir of Love After Loss

“The Limón technique centers the defined poles of ‘fall’ and ‘recovery.’ However, the dance is what happens in the undefined, unpredictable, unsettled, and magnificently alive moment-to-moment between the two. Wholly embodying this in-between mercurial time/space, Joanne De Simone writes—as she danced, as she lives—with raw honesty, brilliance, and seemingly boundless generosity. Joanne’s is a fierce grace; not delicately poised above, but rather in a visceral and dynamic intimacy with the gravity, heartfelt vulnerability, and wonder of person and parenthood.” —Steuart Gold, somatic psychotherapist and former Limón Company dancer

“Joanne vividly paints a picture of the dance that you must learn when parenting children with medically complex and neurodiverse needs. This book challenges service providers to be a compassionate light in the darkness while also inspiring parents navigating a life unplanned yet beautiful in its design.” —Aubrey Schmalle, OTR/L, speaker, author, and owner of Sensational Achievements, LLC

“Rarely does someone convey the experience of raising a child with a disability with such beauty and honesty. Joanne De Simone has managed to raise not one but two children with dignity, respect, and a drive to make certain that the world will be a better place for them because of her tireless love, advocacy, and activism. A must-read for families with challenges, as well as anyone who craves others’ authenticity to help process the pain and joy life offers us.” —Alma Schneider, LCSW, cofounder of the 2 Moms No Fluff podcast and cofounder of 1in6 Consulting Foundation

From the Publisher

The Limón technique centers the defined poles of ‘fall’ and ‘recovery.’ However, the dance is what happens in the undefined, unpredictable, unsettled, and magnificently alive moment-to-moment between the two. Wholly embodying this in-between mercurial time/space, Joanne De Simone writes—as she danced, as she lives—with raw honesty, brilliance, and seemingly boundless generosity. Joanne’s is a fierce grace; not delicately poised above, but rather in a visceral and dynamic intimacy with the gravity, heartfelt vulnerability, and wonder of person and parenthood.

Steuart Gold

A memoir of strength, persistence, and—most of all—love. Parenting is never easy, but, as De Simone discovers, raising two children with disabilities can easily knock a mother down. Gracefully weaving the threads of dance, motherhood, and disability through her remarkable journey, De Simone shows us all how to ‘fall with the direct intention to rise.’

Karen DeBonis

An unflinchingly honest and beautifully rendered memoir. With breath-taking clarity, the author’s words dance across each page, imbued with love, pain, and heart, as she shares the challenges and joys of raising her two special sons.”

Diana Kupershmit

Rarely does someone convey the experience of raising a child with a disability with such beauty and honesty. Joanne De Simone has managed to raise not one but two children with dignity, respect, and a drive to make certain that the world will be a better place for them because of her tireless love, advocacy, and activism. A must-read for families with challenges, as well as anyone who craves others’ authenticity to help process the pain and joy life offers us.

Alma Schneider

Joanne vividly paints a picture of the dance that you must learn when parenting children with medically complex and neurodiverse needs. This book challenges service providers to be a compassionate light in the darkness while also inspiring parents navigating a life unplanned yet beautiful in its design.

Aubrey Schmalle

Joanne De Simone takes the reader on a powerful journey, masterfully weaving lessons learned as a dancer into her experiences as a mother of two children with disabilities. It is beautifully written, heartbreaking, and inspiring. The raw honesty of her storytelling allows the reader to truly understand the complexities of raising children with complicated challenges.”

Jesse Torrey

Heartfelt and engaging, this memoir of raising children requiring vastly varying degrees of care and advocacy delicately threads blurred, complicated, and demanding lines. With the best parts of quiet compassion, noiseless rage, and complete, unconditional acceptance, Joanne De Simone depicts a specific, sweeping motherhood that soars far above unrelenting daily demands. Through the lens of her foundation in dance, Joanne embraces the gift of the children in her home, not those who once occupied her imagination.

Lisa Romeo

2024-05-23
In this memoir, a mother compares her life as a dancer with parenting two children with disabilities.

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.

Kirkus Reviews