Raising Blaze is a
rich memoir by Debra Ginsberg chronicling the first thirteen years of her son
Blaze's life. During his birth, which was overdue, the umbilical chord became
tightly wrapped around his neck, twice. Maybe this was the reason that Blaze
was different from other children. Whatever the reason, it was clear that he
had difficulty fitting in with other children at school right from the start.
His psychological development was a little unusual, being gifted in some areas,
such as identifying different musical styles, but he did not begin speaking
until he was three, and he was always extremely sensitive to loud noises.
Ginsberg thought it best that Blaze did not attend pre-school and he had no
experience being around other children. So she was not surprised that he was
not very cooperative when he first started kindergarten. Ginsberg was
astonished, however, when after his first day his teacher suggested that he be
put into a special-education class and asked her to attend a meeting to
construct an individualized education program (IEP). This meeting proved to be
one of countless such meetings in which she butted heads with psychologists,
teachers and administrators. Nevertheless, she agreed to Blaze joining the
special-ed program, and she also agreed for Blaze to undergo psychological
testing. She soon found that he did not test well, because he mostly refused
to perform the tests tasks. Ginsberg was sure that his true abilities were not being
accurately measured. She also soon found that different psychologists arrived
at very different assessments of Blaze's skills and problems. One said he was
of above average intelligence, while another proposed a label of mental
retardation. He had his first neuropsychological evaluation when he was five
years old. From early on, professionals were recommending that Blaze take
medication to help him gain more from his time in the classroom and to stop him
from being so disruptive. Ginsberg was very reluctant to put him on
psychotropic drugs when it wasn't even clear what his diagnosis was. His
behavior improved on its own, but still the school recommended that Blaze
retake kindergarten because he was not yet ready for first grade, which they
explained was very demanding.
The struggle to understand the school's thinking
about Blaze and get him the best education available continued for years.
Ginsberg eventually gave up a promising career in the publishing industry in
order to be able work as a parent volunteer in Blaze's class, so she could give
him the help he needed. This arrangement worked well for him, but it didn't
solve all his problems, and by the time he moved up to middle school, he was
getting absolutely nothing from his education. At that point, Ginsberg took
him out of school and started home schooling him, where he started doing much
better. That is where the book ends, with Blaze's future uncertain. His most
recent categorization by the middle school IEP team is "multiple
disabilities." Along the way, we see Ginsberg's perception of various
teachers and suggestions change. She gets to know some professionals who she
greatly admires for their dedication to their jobs, while there are others who
she views as entirely unsympathetic and unprofessional. Ginsberg becomes far
more open-minded about special-education, but she retains great suspicion for
the medical approach to Blaze's problems.
Raising Blaze is a powerful book,
especially because it is unusual. There have been a number of memoirs telling the
stories of families with children diagnosed with fairly well-defined
disabilities such as Down syndrome or autism, but what is distinctive about
Blaze is that he does not fit existing diagnostic categories well, and so he is
given catch-all diagnoses such as pervasive developmental delay. It is hard
enough getting appropriate treatment and education when a child's condition is
well-understood, and Ginsberg's memoir shows what a struggle it is when the
bureaucratic structure of special-education does not fit a child's needs.
Ginsberg herself comes across as a loving and articulate parent ready to admit
her own faults and intent on fighting for her son. This book should be required
reading for special education teachers and administrators. Child psychologists
and parents of exceptional children who do not fit well into existing
categories should also find it thought-provoking and helpful.
© 2003 Christian Perring. All
Perring, Ph.D., is Academic Chair of the Arts & Humanities
Division and Chair of the Philosophy Department at Dowling College, Long Island. He is also
editor of Metapsychology Online Review. His main research is on
philosophical issues in medicine, psychiatry and psychology.