Raising Blaze: A Mother and Son’s Long, Strange Journey into Autism by Debra Ginsberg
Harper Perennial Reprint edition, 2003.
2002 title. Raising Blaze: Bringing Up an Extraordinary Son in an Ordinary World by Debra Ginsberg HarperCollins, 2002
Blaze is not your typical child. In fact, because of his extreme behavioral issues, he is a child in need of great support in a modified educational program. He has a strong family support system: a mother, Debra Ginsberg, a writer who willingly gave up her own job and personal success to ensure that Blaze had at least a fighting chance to get a fair and balanced education of his own. The book details the emotional journal of Blaze, his mother, and his extended family (grandfather, mother’s sisters, and a brother) all of whom pitched in to help when the school system proved to be too much for Blaze.
Ginsberg ran the gamut of regular teachers, special education teachers, aides, psychologists, therapists, principals, meeting them all in and out of classrooms and Individualized Education Program (IEP) meetings held to determine the course of Blaze’s school life. Multiple attempts at a proper diagnosis and thus a handicapping condition label left school personnel and family members frustrated. Blaze did not fit neatly into a DSM-IV (the catalog of handicapping conditions labels and descriptors), not that the label would have helped anything. After years of frustration and major disappointments with the educational system, Ginsberg threw down the gauntlet and got a legal advocate for her son.
The book covers Blaze’s life from conception, his difficult birth, the years of doctor’s visits and tests, through year after year of educational crises. Fifth and sixth grades provided a measure of relief in the form of an exceptional special education teacher who was even willing to take Blaze on the annual sixth grade camping trip, a potentially traumatic event for an autistic child. The book ends after an abortive beginning in seventh grade. Ginsberg and her family begin to home-school blaze in a team effort, with the plan for him to eventually return to school.
Ginsberg wrote this book because she could never find one to read herself when she was in the throes of Blaze’s chaotic school years. She says,
It is true that every human story is unique, yet it is also true that there are qualities we all share as humans. Among those qualities are our differences and thus our sameness. My hope for Raising Blaze was that others would find themselves in this perspective and in our story.
I connected with this book in three ways, first as a mother of a special needs child (I remember those IEP meetings well!), as a special education teacher, and as a school administrator. Because I had sat in the parent’s seat at the IEP meetings for my daughter, I felt I had a better understanding of the parents’ feelings and goals when I sat in the educator and administrator’s seats for their children’s IEPs. Each role made me a better fit for the other roles.
Debra’s book does some of that, too. She tells the truth when she relates the discomfort a parent feels in IEP meetings. As a frequent parent volunteer and a special education classroom aide, she realized that she not only has to teach these children, she needed to touch their hearts. These children well know that they are different, and they need teachers who will treat them as the special persons they are. They are not just a collection of behaviors that vary from the norm.
Teachers and parents of all children should read this book for insights into the world of special education. As an administrator (if I were not already retired), I would have my entire faculty and staff read the book, and then share it with the school community. The book has messages for each person who reads it.
Blaze was in seventh grade at the end of Ginsberg’s book. Now he is in his twenties, and he has written a book about his experiences: Episodes: My Life as I See It. I am looking forward to reading this book, too.