Book Overview

The book, Beautiful Ben – My Son with Autism, is written by Sue Lehr and is a narrative or collection of stories about her adopted biracial son, Ben, who was diagnosed as being autistic at the age of four. Sue’s stories take us on a journey through her; her husband, Bob’s; and their children’s lives from the time they met in 1961 to the writing of this book in 2009. Sue refers to the 1960’s as turbulent times and says her and Bob were trying to figure out how to change the world into a better, kinder, gentler place for all people. She goes on to say that what governed them most was The Golden Rule – treat others as you would want to be treated.
Early in their marriage they decided that they would like to adopt “hard to place” racially mixed children. Their first child, Sherry, was born in 1968 and almost five years later they adopted Penny, a racially mixed four month old girl. Ben was their second “hard to place” adoption at the age of five months. At first, everything seemed to be fine; however, it didn’t take long before they had concerns about Ben’s development or lack of development. From this point onward their family life really became turbulent with many ups and downs.
Bob’s profession is a behavioural psychologist and Sue is an educator; in particular, working in special education. Thus, they had some professional as well as parental knowledge and insights into what might be going on with Ben. When Ben was around one year old, they started the process of trying to find out what was going on with Ben’s development and how to help him. They first went to an ophthalmologist due to Ben having a ‘lazy eye’ but to their shock and dismay was told by the ophthalmologist that Ben was brain damaged and nothing could be done for him. From here, they went to an early childhood evaluation center for a comprehensive assessment. The recommendation of this team was to continue “active stimulation training”. They were not given any medical records when Ben was adopted and had to engage the help of attorneys to finally get them. And when they did, the news was not good -- difficult delivery, born breach with the aid of a vacuum, Apgar rating was 2 & 5, not breathing at birth and was resuscitated at birth in order to breathe. When Ben was 3 years old they enrolled him in a program for “handicapped children only” as they recognized his development was not normal in some ways. For example, he could walk but his gait was awkward, didn’t play with toys, rarely spoke real words, was socially aloof, and his favourite position was to lay on his back with legs extended up in the air and wave his fingers in front of his face.
Their experiences with the education system and particular schools were just as turbulent and challenging as their previous experiences with finding out what was going on with Ben. Ben’s schooling started with him attending The Campus Laboratory School at SUNY Cortland in a classroom for “handicapped” children ages three and four. Their two older daughters also attended this school. From there Ben went on to attend Jowonio, the name being an Indian word meaning, “to set free”. In this school, students with disabilities were included in regular classrooms with the philosophy being that all children can learn. Sue says this was their first introduction to inclusion. Ben had great experiences here and demonstrated signs of growing developmentally. At the end of two years at Jowonio, plans were put in place for Ben to attend the regular kindergarten class at Waters Elementary School only to be told a few days prior to school opening that he was being recommended to attend a BOCES (Board of Cooperative Educational Services) self-contained classroom for emotionally disturbed children. However, Sue and Bob sent Ben to Waters Elementary despite the recommendation of the self-contained classroom for emotionally disturbed children. Life at Waters Elementary was anything but positive for Ben. The teachers at this school actually circulated a petition identifying Ben “as an animal” who could not benefit from schooling and demanded that he be removed immediately. The Lehr’s had had enough and it was time for court so they filed a law suit against the school district. These long drawn out court hearings were rough on the family and Ben’s behaviour really deteriorated. He was more self-injurious to himself and even to others. At the end of the year, it was decided that Ben would attend the Integrated Autistic Program in the Syracuse City School District. This meant he had to travel on a segregated bus to the school and even though his sisters attended a school close by, they were not permitted to travel on the bus with him but instead had to be transported by their parents. This also meant that Ben no longer attended a neighbourhood school with his neighbourhood peers. After this experience, Ben moved on to Junior High and his grade eight year was very positive. Sue says this is where Ben learned how to just hang out and be one of the guys. He also became involved in several after-school clubs; in particular, the Spanish Club. The Spanish Club designed and built a haunted house which was something that Ben could actively take part in as he enjoyed woodworking and building things. Finally, it’s on to high school and at Nottingham School Ben, once again, experienced many ups and downs. Ben was first put in a segregated special education classroom but with the perseverance of the parents, he was eventually welcomed into regular classrooms. His experiences here included: writing his own column for the school newspaper entitled, “Just My Type”; learning how to communicate using facilitated communication; his father, Bob, being reported for child abuse; a teacher aide providing Ben with dairy products knowing that Ben had severe allergies to these; and yes, sexually abused by a teacher aide. The time came for Ben to graduate from high school and that he did. He proudly walked across the stage to receive his diploma. What would happen to Ben, now?
Ben volunteered at several places including the local library. But Ben, as well as his parents, wanted work that had meaning, purpose, and enjoyment. Thus, when asked what he wanted to do, Ben communicated woodworking shop as in building furniture to sell. Needless to say, this was a bit scary for the parents – just imagine Ben using power tools! However, with patience and perseverance, Bob taught Ben to safely and responsibly use the power tools. Then came another shocker as Ben communicated, “YOU NEED TO KICK ME OUT”, meaning he wanted to move out of his parent’s home. When questioned why, Ben indicated that he wanted to be a real man and live on his own like his two sisters. The parents bought a house for Ben and set about finding suitable roommates who could help support Ben. Ben was a very active participant in the house hunt as well as deciding on suitable roommates. After going through many roommates, some of whom worked out well while others didn’t, Ben is finally living on his own (as he always wished) and operating a woodworking shop with the support of his good friend Angelo; his parents; his sister, Penny who lives next door to him; and community living.
Ben’s father, Bob, has been diagnosed with Alzheimer’s. Both Bob and Sue have retired now and as their quest has always been to have Ben live a free and full life independent of them, they have ensured that provisions are put in place for him when they are no longer here. As Sue quotes, “Ben’s life, his work, is slowly spiralling away from Bob and me. That’s what we want. We need to know that Ben can make it without us. We are not going to be here forever.” (Page 137)
I found this book to be informative, motivating, funny, and, at times, disturbing or haunting. It could be intended for a variety of audiences from parents, families, students, and medical personnel, to educational systems. This book resonated with me on both a personal and professional level. Personally, I have had experiences/relationships with people with disabilities. Professionally, I have worked in special education for twenty plus years. In particular, my current position as an itinerant teacher for inclusive education where I am continuously educating, promoting, and advocating the inclusion of all students in the least restrictive environments. I am pleased to experience many successes in the area of inclusive education; however, just as Sue and her family experienced, there are still many challenges to overcome. But, hopefully, there are more “Sue’s” out there to persevere and keep the torch going.