This book is valuable reading for educators and therapists who want the parent perspective on raising a profoundly developmentally delayed child. In this case, we have the single father’s perspective. Other parents of disabled children will be inspired by the author’s refusal to accept complacency, anger at suggestions of institutionalization and insistence that the school system provide the free and appropriate education the law demands.
Factors that Helped Ben Learn:
Readers learn of the complicated family dynamics and the dissolution of a marriage that results from intense stress, differences in parenting styles, the mother’s personal struggles with mental illness and the author’s decision to live openly as a homosexual. However, as much as these background facts create a colorful story, they are divulged mainly to paint the picture of Ben’s childhood- one with contrasts between his mother’s chaotic home and his father’s attempt to create a structured learning environment. In the process readers learn about basic teaching strategies (i.e. hand over hand training), behavior modification techniques and sensory integration strategies that have contributed to Ben’s ability to learn. In addition, we watch the author grasp at every alternative treatment straw that had a chance of helping his son. These included changes in diet, mega-vitamins, phototherapy and chelation to remove toxic metals.
Ben’s Transition from Profoundly Disabled to Prevocational Trainee:
Over the 21 year span, this memoir covers Ben transitions from a nonverbal child who put all objects into his mouth and ears, smeared feces, screamed from sensory overload and fled at every opportunity, into a young man who could crack a joke, knew his left shoe from right, brushed his teeth and with his aide’s assistance worked at Walmart hanging up clothing. This story gives hope to parents and others who work with the severely developmentally delayed population.
A Highly Recommended Book:
I highly recommend this book not only for its high quality writing and entertainment value -- but because reading it gives insight into the inner resources a parent must have to simply survive, let alone keep the dream of recovery alive. Indeed, Ben does recover in many unexpected ways and continues to be what he father calls “a work in progress”.