Saving Ben: A Father's Story of Autism

by Dan E. Burns

Book Overview

Each year thousands of children are diagnosed with autism, a devastating neurological disorder that profoundly affects a person's language and social development. Saving Ben is the story of one family... This description may be from another edition of this product.

• Format: Hardcover
• Language: English
• ISBN: 1574412698
• ISBN13: 9781574412697
• Release Date: August 2009
• Publisher: University of North Texas Press
• Length: 154 Pages
• Weight: 1.00 lbs.
• Dimensions: 0.8" x 6.0" x 9.2"

Customer Reviews

"Riches far more valuable in the long run."

Among parents of children with autism, in whatever form, there is a cliché: "If you have seen one child with autism, you have seen one child with autism." Its appearance and therapies will differ so much from child to child, that it is impossible to generalize from something that worked for one family to have confidence that it will work for you. Every child is different, and requires individualized care. I mention that background because my own experience as the parent of a child with autism has been very different from what Dan Burns describes so eloquently in Saving Ben. Nonetheless, the challenges he and his family faced were very familiar from my own life, and that of my family: * Overcoming low expectations from teachers, despite a parent's belief in his child's abilities, and desire to give the child real challenges and goals at school. * Different perspectives between the child's father and mother (much less other relatives without the first hand experience of living with autism) on how aggressively to provide therapy, and the stresses that difference creates in the family. * Confusion about the appropriate therapies, when each doctor and/or therapist recommends something different, often at great cost, with no immediate "ah-ha" moment revealing what works (or does not). For me, this was especially true when my son was first diagnosed, and I did not know enough to filter the real from the charlatans. * Constant disruption of plans, from the short term to career goals. I vividly recall sitting trapped in a fast food restaurant for the better part of a day when my son would not leave the play area, just as Dan Burns describes not being able to move to go to the bathroom because of the disruption it would cause for his son, the "Motion Police." * The critical importance of good teachers and assistants, sensitive to your child, who come to understand his way of being - even to the point of protecting him against others in the school system whose inflexibility can be harmful to the child's development. I felt that Saving Ben well captures the roller coaster ride of emotions that parents and siblings of a person with autism live with, every day. Perhaps even more importantly, for other parents, it also shows how the strength of love for one's child can, over time, bring acceptance of the life that you have together, and the joys it brings, as in the often quoted "Holland" parable familiar to parents of special needs children. Saving Ben doesn't have the clichéd "feel good" takeaway the reader may expect, and at times it is quite discomforting to read. But as so many people have come to know a family affected by autism, it will give the reader - and teachers and therapists -a look at what life can be "on the inside," and the "transformation of values" that can occur when the family's love for the child overcomes the challenges of the disability. And, in fact, there is a "feel good" ending. Parents will, as I did, admire Dan B

When love comes in an unexpected package

Saving Ben isn't your typical story about a child with autism. Ben's father is very open and honest in his story about how his family deals with with an autistic child. Their lives seem to spin out of control at times. Ben's mom, Sue, has recalled through therapy that she was abused as a child, and has developed her own mental problems in order to deal with that. Their marriage breaks up as a result the fact that the author is gay. Combine that with job losses, eviction from his home at one point, and Ben's now out-of-control condition and you have a situation that would cause most people to just give up. When Ben was diagnosed at three years, even the doctor told him to, "Take him home, love him, and save your money for his institutionalization when he turns twenty-one." But Dan Burns didn't give up. He read everything he could find on autism and talked to doctors across the country, weighing the different opinions and treatment options for his son and the all-too-few alternative approaches available. He enrolled him in different schools and fought with the local school system for a proper and relevant education for his son in which he could actually learn something. He was finally able to secure 40 hour per week conditioning classes that slowly but surely produced results. It seems like the schools don't know how to teach these kids and with all the other life disruptions, not all of this happened right away, Ben was around seven when he finally got the type of training that worked for him. Now, at 21, some of the worst aspects of the condition are in the past. Ben is still learning and working and improving. But he can take bike rides with his dad and can understand simple commands and maybe more than everyone realizes. He can say a few words and has worked at assisted jobs for the handicapped. He is able to live at home and not in an institution. He is growing, thanks to his dad's love and tenacity. Some parts of this book are very sad. Since autism is a condition that affects each person differently, things that work with one child might not work with another. There is still so much that isn't known about treatment and not much at all about what might cause it. This is just one family's story about what is sometimes possible with love and persistence.

A fantastic and powerful story of love and fighting for life

The author writes a poignant, well-written account of his life as a gay man, married and the father of an autistic child. When told by doctors to save his money to pay for institutional care down the road, the fighter dad begins his war with the disease and with prejudice. He studies and learns all he can. He fights for his son's life. This is not a sweet story. It's written the way life is --- messy. The author not only finds his son but himself as well. Moreover, he discusses his wife and her experience with child abuse. He talks about dealing with the inordinate stress in this terrible situation. It is wonderful to see this sort of deep father's love and to discover life through his very special eyes. This is a powerful, dynamic book and I highly recommend it. - Susanna K. Hutcheson

Fighting For Your Child

This book was not at all what I expected it to be. It was not about a family struck by a child's sudden illness who rallied together, found effective treatments, and then all lived happily ever after, with important life lessons learned. No, there were no sugar coated cliches in this book at all. Maybe that is why I couldn't put this book down. This book chronicled the devastation that autism can cause and the complete lack of understanding of what it is by the so-called professionals that are supposed to know how to help. Dan Burns is an original Warrior Dad. A parent willing to look under every rock, knock down every door, to do whatever it would take to find the resources that would bring Ben to his full potential. Parents like him have paved the way for the parents of today to access important information so much more quickly, saving valuable time in the fight to get their children the much needed therapies they need to reach their full potential. Mr. Burns faced more obstacles than most, but he was still able to make amazing things happen for Ben. Every parent can learn from him, as one of the most valuable attributes a parent of a child with autism can have is tenacity. And Mr. Burns definitely shows that he has plenty of that in this book. But this book is not just about Autism. It is about struggling against prejudice. It is about trying to access information clouded by egos and stereotypes. It is about fighting an archaic system. And of course, it is about the strongest force in the universe: the love a parent has for their child.

Family Values

In 1987 Dan Burns, an established professional, entrepreneur and father of two nearly-grown children, welcomed his new son Benjamin into the world. He hoped that Ben would be his special gift - and the son for whom nothing was spared. Dan would be right, but in ways he could not have foreseen. Around age one, Ben developed ear infections, spurring hundreds of trips to the doctor and seemingly endless doses of antibiotics. Thus began Ben's decline and a father's struggle to do the best for, and get the best from, his autistic son. Dr. Dan Burns is my cousin. We share fond childhood memories of small-town Oklahoma family holidays and of parents and grandparents partnered until death. The family knew, but no one acknowledged, that there was something different about Danny. He is gay. It was the 1950s and life was supposedly simple. Ozzie and Harriet, the Cold War, new products through corporate innovation, illness avoided with vaccine and cured with antibiotics were the models around which our lives were imagined. We drank milk, took shots, and ate Wonder Bread. Of course, our generation rebelled against gender roles, repression for everyone and oppression for non-white, non-male, non-heterosexual and differently-abled - as evidenced in Dan's telling of his and his family's personal life stories. But what from our parents' and grandparents' values would we keep? Hope against daunting odds, relentless problem-solving, fierce determination, commitment to family and refusal to coddle were the values Dan embraced in his efforts to recover Ben. In the last - refusal to coddle - lay significant progress for Ben with the behavioral methods of the Lovaas model. Dan's struggle to nurture Ben through illness, severe decline, recovery and setbacks raises many questions that he does not presume to answer. His story provides intriguing hints about the origins and etiology of autism. It queries without concluding whether antibiotics, vaccines, high-gluten diet, environmental toxins and the like are contributing factors. Dan's narratives about repeated medical and educational failure inevitably suggest questions about when and how system-wide programs and institutional protocols for routine case management should be set aside for other interventions. His story finds heroism among individual professionals and leaves us wondering how their remarkable insight and commitment can be harnessed rather than squashed by institutions. Carefully crafted and deeply moving, Saving Ben: A Father's Story of Autism is ultimately a story of hope and triumph of the human spirit, family values we can all, gay or straight, embrace.