When you have a child that doesn't fit in, what do you do? Debra Ginsberg knew that her son, Blaze, was unique from the moment he was born in 1987. What she didn't know was that Blaze's differences would be regarded by the outside world not as gifts, but as impediments to social and academic success. Blaze never crawled. He just got up and walked when he turned one. He called his mother 'Zsa Zsa' until he was three. By kindergarten, he loved the music of Miles Davis and Ella Fitzgerald. He fears butterflies and is fascinated by garbage trucks. With the same honesty that made Waiting a success, Raising Blaze: Bringing Up an Extraordinary Son in an Ordinary World chronicles Debra's experience in raising a child who has defied definition by the host of professionals who have sought to label his differences. Ginsberg introduces us to a remarkable child and her own unusual childhood. She writes about a family which shows us the redemptive power of faith, humour and love.
A specific diagnosis of a disability may provide a welcome explanation for puzzling behavior, and even offer relief through medication or therapy. But as Debra Ginsberg explains in Raising Blaze, her memoir of bringing up her own "extraordinary" child, a diagnosis can sometimes create more questions than answers. Blaze, who was choked by his own umbilical cord during delivery, expresses himself with enigmatic figurative phrases; loud noises send him screaming around the room. The doctors' assessment was vague to the point of tautology: "pervasive developmental disorder, not otherwise specified." Ginsberg struggles with the public-school system and its rigorous notions of acceptable behavior, where even happiness is monitored: "I am struck again by how difficult it is to navigate a world where we have to be mindful of when laughter is appropriate."
According to Jeanne Safer, in The Normal One, the families of disabled or difficult children also suffer. Inspired by her own troubled relationship with her brother, Safer sees "normal" siblings as suffering from "Caliban syndrome." Her book tries to peek under the sentimental surface of most representations of disability (such as the TV star who told Us magazine that her mentally retarded sister was "my love, my heart, my angel"). She writes, "Guilt is rarely absent from the thoughts of healthy adults about their damaged siblings because no amount of devotion or care can make the damaged whole or blot out the dark victory of their own normality." Though some draw away, others become martyrs, feeling inextricably bound to care uncritically for their less able brother or sister. And some, like Safer, reject the sibling, then write a book about it..(Andrea Thompson)