Customer Reviews

Saving Ben: A Father's Story of Autism (Mayborn Literary Nonfiction Series)

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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

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 Burns' courage in giving up everything that the world values, in order to devote himself to helping his son - how many of us would be willing to risk all that he did? In a closing passage, he tries to balance the cost to of trying to "save Ben" to his career and dreams, against the modest results (at least by the ambitious goals he had initially set for "The Benjamin Project").

But there are many kinds of riches, and Ben touched me in a place that cannot be untouched. I cannot undo my love for him. Difficult as it was, I chose the right path for me and Ben. Into my third score of years, I am rich in experience, satisfaction, possibilities. I am no longer a human doing, but a human being. I have learned that you can lose everything except what you give away. That done, there is little left to fear.

I recommend Saving Ben to anyone who loves someone with autism, to help to inspire the courage to "give away" a parent's life to that person. What you get back, the "riches" that Dan Burns describes, are far more valuable in the long run.

I should note that I was provided a complimentary review copy of this book to write this review.

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.

This memoir tells of Ben, a boy (now man) with autism, and his father's struggles to get him the help he needs to progress and grow. The father, Dan Burns, is a fierce and caring advocate for his son, and this love shows through. He does everything he can to help Ben. I appreciate the honesty in the writing. Ben makes what some might consider to be little progress over the years, but I am sure he has made much more than he would have without his father's help.

The biggest issue with this book is it's just about too many topics. There is material for 5 books here, but this is just one book. Dan talks about his son's autism, of course, but also about his own homosexuality and his journey to acceptance of it, his wife's mental illness, his job struggles, his extended family---all kinds of topics. This doesn't leave room or focus in a book of this length to really tell the main story. At times, it seems left behind, and there are sudden jumps in the narrative that are disconcerting.

I think this book does deserve readers. We parents with autistic kids or adults are not all polished writers. We don't all live lives that can lead to a laser focus on our child's recovery. But we all share a love for our children, and we all need to hear each other's stories.

Every parent faces their child's autism differently, but the love is near-universal. "Saving Ben: A Father's Story of Autism" offers the perspective of Dan E. Burns, as he tells his tale of raising his autistic. son. As his son grows up from his age three diagnosis to a legal adult with full privileges, Burns shows what a father can do to help an autistic child while fighting the pressures of the medical world around them. Touching, inspirational, and in some cases coming through with helpful advice, "Saving Ben" is a fine addition to any autistic memoir collection.

Dan Burns in determined to "recover" his son from Autism. In the early years, Dan knew that Ben was different, but it wasn't until the exact title of autism was placed on his son that Dr. Burns buckled down and with sheer determination and very little support from his family set out to find the son that he knew was lost inside the autism spectrum.

Not all stories in this field have a happy ending, but sometimes happiness comes in small step, a twinkle, a nod of understanding, sometimes you have to find your own giant leap and that is what I think Ben found. He has a father that loves him unconditionally, a mother, that in her own way, is trying and a grandmother that might not have been able to stomach what her beloved grandson had to endure, but was there for him in the best way she could.

If you are looking for a step by step plan to "cure" an autistic child, then this isn't the right book for you, but if you are looking for a book the details one families struggle, then take a look. See how another family is battling the giant bureaucracy and see that there just might be a middle ground. A place where a family can find some peace and understanding. Where a child can grow and learn with enough love and patience.

Saving Ben is an open and honest story about a child with autism. My first thought when reading this book was how the author spoke so freely about everything that went on in his life. He held nothing back and that to me is what made this story so incredible but what really made this book so incredible to me was I got the chance to see through the eyes of a parent on what it is like to raise an autistic child. After reading this book I must say that my heart goes out to all the parents that have children with autism and if my mom was alive today I would thank her for keeping me. I was born in the mid 50's and back then nobody knew what the heck was wrong with me although my autism is different from Ben I honestly still can relate. Saving Ben is a great read for anyone who does not want to give up.

If you are expecting a "miracle story" about how a child was saved by one treatment or another, don't buy this book. This is a story of real people and real events, and of trying everything to make life work.

It is also a "no holds barred" book. In this story Dr. Burns reveals his own very personal struggles with his sexuality as well as his wife's struggles with her own demons and past. There are no heroes or heroines, just people trying to survive, and a son who is lost in his own world.

While it is a story about treatments and therapies and fighting the system, it is also a book about the very meaning of hope. When a child is condemned by an entire system, who is there to stand up for him? And if the parents don't, what happens to the child.

Dr. Burns opens his Preface with these words: "This is not the book I hoped to write." And he later continues ... "In the end, I found I had written a recovery story after all. What is recovered is a family more resilient, forgiving, and loving. Like the characters in the Wizard of Oz, we have made a journey through a perilous land, and we have discovered in ourselves the gifts that prepare us to seek the future beyond the fear, the darkness. After the earthquake, wind, and fire, a still small voice of peace."

Perhaps Ben has not been saved to be what we call normal. But he and his parents have found anew that all is not hopeless and that there are many tomorrows in which learning and growth will come. In most cases where I have enjoyed a book, I mention that I look forward to the author's next book. Not so in this case, In this case I look forward to the book that will eventually be written by Ben Burns, telling his own story ... because I believe that someday will happen and can happen.

Saving Ben: A Father's Story of Autism by Dan Burns, Ph.D. Reviewed by Beverly Voss, LCSW

Dan Burns has been a professor, software engineer, writer, father of two grown children, husband, single parent, gay man of intense spirituality and ferociously determined advocate for his autistic third child, Ben. In Saving Ben: A Father's Story of Autism, all these roles play their parts in "recovering Ben," a term Burns uses frequently.

We recover what is lost. Our innocence, our sobriety, our keys, our reputation. But how do we recover a child? When Ben was born, the common medical "wisdom" was that autistic children were doomed to a land of no language, no social interactions, no abilities that we call human. Dan and Susan, Ben's mother, were advised to save money for his eventual institutionalization.

Although Ben received loving care from his parents and his extended family, he was a difficult baby subject to screaming, numerous ear infections and trips to the emergency room. By three, he was diagnosed as autistic and extremely retarded in intellectual, physical and social development. In addition, Susan began suffering from PTSD due to childhood sexual abuse by her father. Eventually the marriage ended as she and Dan struggled to deal with the enormous difficulties that accompany all these factors.

Saving Ben is the extraordinary story of a father's fierce determination to restore his son's health and his place in society when no one believed it was possible. He fought with the Dallas school system to implement a program that would actually help Ben progress. He consulted not only the medical profession but lesser-known groups committed to using every possible strategy from physical therapy to nutritional changes to pull these children back from the abyss. And it worked. Except for the days and months that Ben regressed and seemed to lose what progress he'd made.

Dan persisted. As Susan healed, she also came on board as a fierce advocate and medical detective. It did not turn Ben magically into a fully functioning adult, but neither did it leave him in the darkness to which most of society was willing to consign him.

Ben is now twenty-one. His hyperacusis -- painfully sensitive hearing -- has been cured. He has language skills and laughs with his family, bicycles with his dad and has self-care skills beyond the reach of "unrecovered" autistic children.

Although this is Ben's story, it is also Dan's. It's the story of the transformation of love -- love made of stubbornness, perseverance, exhaustion and at times, fury. I think of ancient fairy tales in which children are lost, spirited away, only to be recovered when some alchemical process involving great sacrifice or tremendous feats of courage. This is one of those stories. To fight for your child's place in a classroom, potty train a six-year old, teach him language only to see it disappear after some setback, is heroic in a way for which we have no appreciation if we look only to guns and large public gestures for our sense of courage and heroism.

Any parent who has been reduced to tears or fury (or both) by a two-year old's refusal to cooperate with the adult agenda will relate to this story. And any parent who has had the good fortune to see that refusal as a temporary developmental state will be humbled and inspired by the honesty, perseverance and love this father found in himself.

And used to recover Ben.

Beverly Voss, LCSW (Licensed Clinical Social Worker), is a clinical social worker, poet and InterPlay teacher. She has had a private psychotherapy practice in Austin, TX, for thirty years. She teaches seminars on creative journaling, improvisational dance, voice and story telling and self-care for the professionals in the helping professions.

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.