Strange Beauty, by Eliza Factor

No one plans to have a child with disabilities.  When Eliza Factor's son began missing developmental milestones and exhibiting atypical behaviors, it dawned on her that his childhood was not going to be like most kids.  In her book Strange Beauty: A Portrait of My Son, she chronicles the challenges and joys of life with Felix, her oldest child.  Felix, who lives with cerebral palsy, autism, and endures self-destructive fits of slapping and hitting himself, has been a puzzle for Factor and her family to unravel.

Other parents of children with disabilities will cry and laugh with Factor as she describes the slow realization that Felix has a disability, the mix of pain and pleasure she experienced when a label was finally placed on him, and the challenge of finding the right doctors, specialists, and therapists.  Navigating the health care system is tough enough, but when a child has a variety of disabilities, it can be especially tough.  She writes, "Even I, in New York, with a good insurance plan, extra money when our insurance plan refused to cooperate, and a flexible schedule, could not perform up to par."  I was reminded how thankful I am for my wife who, like Factor, has had to fill out countless forms (repeating the same information about medical history again and again), spent long hours on the phone with insurance companies and social service agencies attempting to get the right care and benefits, and keeping up with the various programs for which our children qualify. 

One of their great challenges was finding the right educational setting for Felix.  After some truly horrible experiences, where the schools had no idea how to handle his dangerous fits, they found some schools that supported him well.  They worked with the Department of Education, which of course has bureaucratic challenges galore, but also with private schools, as they have the means to pay tuition if needed.  Yet finding the right fit was still a great challenge.  As the book ends, Factor determined that the schools Felix has attended aren't the best place for him, and home school isn't a good option, so she has found a residential school a few hours drive from home.  Given the tone of the rest of the book, I was surprised when she even started considering residential placement for Felix.  But as she describes the school where he ended up, it sounds like a place where he will thrive.

A large part of Factor's story is creating a space where Felix and other kids with disabilities can socialize and play in a setting that suits their unique needs.  She created a new organization with play rooms that feature large swings, ball pits, bean bag chairs, and other equipment on which kids with sensory integration issues, mobility issues, autism, and other disabilities and challenges can play, relax, and socialize.  In this setting, she has taken the challenges she has faced as a parent and directed her knowledge and energy to enrich other families.  I love the idea.  It's inspiring and encouraging.  (If you're interested, check out extremekidsandcrew.org)

Factor doesn't hold much back as she describes her life with Felix.  Parents who have children living with disabilities will be encouraged by her steadfastness and her determination to find what is best for Felix and to let her experiences spill over into other families' lives. 


Thanks to NetGalley and the publisher for the complimentary electronic review copy!