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Summary
Summary
A unique and hopeful story of how one woman and her family were transformed by her child's multiple disabilities and inability to talk and how she, in turn, transformed a community.
This intimate, no-holds barred memoir shares one family's experiences with a child who is both autistic and physically disabled. It is a story of infectious laughter, blood on the floor, intense physical conflict, and of two little girls growing up in the shadow of their charming and fitful brother. And it is the story of a mother and writer and the illuminating effect of imagining the world through the eyes of her beautiful, charismatic, and nonverbal son, Felix.
Felix and his sisters inspire Eliza to start Extreme Kids, a community center that connects families with children with disabilities through the arts and play, and transform how she saw herself and the world. She writes of the joy this project brings her, as well as the disconnect of being lauded for helping others at the same time that she cannot help her own son.
As Felix grows bigger and stronger, his assaults against himself grow more destructive. When his bruised limbs and face prompt Child Services to investigate the Factors for abuse, Eliza realizes how dangerous her home has become.
Strange Beauty is a personal story, but it shines a light on the combustible conditions many families are living in at this moment. The United States offers parents whose children are prone to violence very little help. That Eliza's story ends happily, with Felix thriving at Crotched Mountain School, is due more to luck than policy. There are few such schools and many such children.
When children are violent, we fail to account for the internal and external pressures that lead to violence. This is both cruel and counterproductive, for people with disabilities have much to teach us, if we will only listen.
Author Notes
Eliza Factor is the author of the acclaimed novels The Mercury Fountain and Love Maps. She is founder of Extreme Kids Crew, a nonprofit community center with facilities in Brooklyn and Queens. New York, that connects families with children with disabilities through the arts, music, and play. She lives in Brooklyn and New Hampshire with her family.
Reviews (3)
Publisher's Weekly Review
Novelist Factor (The Mercury Fountain) shares her experiences raising a physically disabled child, Felix, in this moving and insightful memoir. Factor and her husband, an attorney, were living in Brooklyn when their first of three children was born. As he grew, they noticed that he was unable to hold himself up like other babies and so began an odyssey of doctor visits, treatments, therapies, scans, and tests, such as the one that revealed Felix had a lack of white brain matter. Felix was diagnosed with a serious disorder called periventricular leukomalacia and eventually with autism as well. Factor felt shame, despair, and loneliness as she confronted the challenges of raising a nonverbal child who cannot walk on his own, yet she was also filled with love for her joyful, exuberant son. As one caregiver noted, "We all think that we do so much for Felix, but he does even more for us." Still, when the sweet-tempered Felix began to rage and injure himself, Factor and her husband began to search for methods to control the behavior, such as acupressure, diet change, and various prescription drugs. In her efforts to aid Felix, Factor is inspired to create the nonprofit Extreme Kids & Crew, a community center where disabled kids socialize and play. Despite the hardships, Factor emphasizes the infinite ways her disabled son enriches and illuminates her life; this passionate story of a mother's quest to help her child will resonate with many readers. (Aug.) © Copyright PWxyz, LLC. All rights reserved.
Kirkus Review
Factor (Love Maps, 2015, etc.) chronicles life with her nonverbal son Felix, who is autistic and physically disabled.When the planes hit the World Trade Center towers on 9/11, the author's boyfriend, Jason, was near the buildings. While she waited for news from him, she had the agonizing fear that they might never have a child together, which led them to getting married and pregnant a year later. During her pregnancy, Factor contracted chicken pox, which, though she didn't realize it at the time, hurt her growing fetus. In this honest memoir that vibrates with unconditional love, the author details what life is like with Felix and her other two children. It took many months, numerous visits to doctors and specialists, and endless tests before she found out just how handicapped Felix would be due to his lack of white matter in his brain. Factor adeptly chronicles each step of the process, each moment of triumph when Felix reached a new goal, and the times when she and her husband felt dismay and even shame when he failed to advance like the other toddlers around him. Throughout, readers gain a sense of the complexity of Felix, whether he's happy, responding to music therapy, or engaged in some awful fit that forces him to scream and tear at his own body. Factor also discusses her other two children, who were born without such issues, her battles with the health care and educational systems, and her subsequent founding of the nonprofit community center Extreme Kids Crew. The author's story demonstrates the need for more quality help for parents of children with disabilities, who will find solace in knowing that others have struggled and found joy in this type of parenting. A frank, compassionate, and highly detailed account of the roller-coaster ride of caring for a disabled, autistic child. Copyright Kirkus Reviews, used with permission.
Booklist Review
*Starred Review* Factor (The Mercury Fountain, 2012) recounts the story of raising her son, Felix, who has both autism and significant physical disabilities. Though nonverbal, Felix's personality was sweet and affectionate until he began having periodic fits of violence against himself. Though prescription drugs at times alleviated this, Factor wanted more for Felix. Extreme Kids and Crew was born out of Factor's vision of a relaxing sensory gym for those with disabilities and their families, where they would not be judged. Through her efforts, Factor created a place for Felix and others to be accepted and integrated into a larger community. Though Felix's situation eventually necessitated his living at a residential school that could meet his needs 24/7, his unique and continuing imprint on every area of Factor's life and on Extreme Kids is evident in this book. A wonderfully uplifting book about Felix's resilience and the love and community that Factor and her family have created and experienced, this is a must-read for anyone touched by or raising a child with disabilities as well as those in the medical field. In a conversational, well-phrased style, Factor relays a positive outlook and hopefulness at every setback that are truly inspirational.--Shaw, Stacy Copyright 2017 Booklist
Table of Contents
1 Introduction | p. 11 |
2 The Beginning | p. 17 |
3 Me and Gino | p. 38 |
4 Squidish | p. 44 |
5 Scary Elders | p. 65 |
6 Therapy | p. 70 |
7 Fort Greene | p. 76 |
8 Pride | p. 80 |
9 The Downside of Body Language | p. 87 |
10 A Bigger World | p. 94 |
11 The warped Synthesizer | p. 103 |
12 Red Tape | p. 109 |
13 Logistics | p. 122 |
14 An Idyll | p. 127 |
15 Oscar | p. 135 |
16 The Devil Screech | p. 141 |
17 Slaps and Nonces | p. 149 |
18 An Idea | p. 164 |
19 Doctors | p. 172 |
20 Extreme Kids & Crew | p. 179 |
21 Space No. 1 | p. 187 |
22 The Book | p. 197 |
23 The Beast Returns | p. 201 |
24 Religion | p. 218 |
25 Hanging On | p. 226 |
26 Discovery | p. 231 |
27 Placement | p. 237 |
28 Diminishment | p. 248 |
29 Crotched Mountain | p. 253 |
Epilogue | p. 263 |
Acknowledgments | p. 270 |