Saving Ben: A Father's Story of Autism

Review of Saving Ben

Saving Ben

Review

Gary Shulman, MS. Ed.
Program Director
Resources for Children with Special Needs, Inc.
116 E. 16th St. 5th Floor
New York, NY 10003
212-677-4650 ext. 20
gshulman@resourcesnyc.org

Sitting with eyes filled with tears of joy, heart filled with optimism and my soul having been uplifted to new heights, I begin writing this review of Saving Ben by Dan E. Burns. I began the journey of delving into this life history on a Friday after a long and satisfying week of helping parents of children with disabilities and conducting special needs workshops, and barreled through this roller coaster ride finishing early Saturday morning. Sometimes as professionals, we lose sight of the journey that parents traverse. We have our own agendas, our own pre-existing goals of what we want for parents and for professionals in the field. Saving Ben reminded me to stop, listen, remember.......that it is all about supporting that journey of discovering the strengths and abilities of each child while supporting the caregivers to the best of our abilities. Ben teaches us to never give up, never stop adapting, never say never. Bravo to Dan E. Burns for giving us a glimpse into his personal journey of enlightenment and bravo to Ben for being Ben, and bravo to all the Bens who make this world the beautiful rainbow of diversity that it is.

Courtesy of Mother-Daughter Book Club.com

More and more autism and treatments for the condition are in the public eye, but when Dan Burns' son Ben was born in the 1980s, little was known about autism or what to do for children who had it. Parents who had skills and resources acted as the best advocates for their children, but even then, much of what they were able to accomplish came through trial and error.

Parents now have more resources to help their children, including the personal stories of parents who have come before them. One of those is Burns' book, Saving Ben, A Father's Story of Autism. Ben's diagnosis when it came was doubly crippling: severe autism and mental retardation. The level of personal care he needed from others to function would tax the ability of most any parent, but for Dan and his wife Sue, who were struggling with issues of their own even before Ben was born, it was particularly difficult.

While I'm not qualified to say whether the treatments Burns tried with Ben over the years are recommended for those with autism, I can say that Saving Ben is foremost a love story of what lengths a father is willing to go to help his son. Burns had two other children when Ben was born, one who had already left home and one who had nearly finished high school. His professional career was well established, and by all outside views he had a good life.

But under the surface he was struggling with his own sexual orientation and his wife was struggling with past abuse. Caring for Ben added more stress to their household. Ultimately, they would divorce and Burns would downplay his own career to care for his son. He was fortunate to be highly educated, which meant he felt confident enough to question and challenge the medical and teaching professionals who recommended courses of action for his son. He was also fortunate to receive financial support from his mother, which meant that as a single father employed part-time he could still pay for extraordinary levels of treatment for Ben.

If members of a mother-daughter book club have been touched by autism, Saving Ben can definitely help other members see how severely this condition can affect every aspect of the whole family. I would have liked to know more about how Ben's siblings dealt with his condition and the disintegration of their parents' marriage, but ultimately, this is an honest portrayal of how profoundly parents' lives can change when they care for a child with disabilities.

Burns' frank discussion of his own personal struggles and mature language make this appropriate for mother-daughter book clubs with girls in high school.

Great

Little was known about autism when Ben was born. The doctors couldn't even tell him for sure what was wrong with Ben and gave him little hope. So Dan went searching for information and hope on his own. This book is full of their triumphs and setbacks. It's a no words barred, brutally honest account of their day to day life and many things that are very personal. This book at times made me sad and at others had me yelling "good for you!!!" to both Dan and Ben.
My first thought when I started reading this book was that Ben was very blessed to have Dan as a father. It wasn't long before I was also thinking that Dan was very blessed as well to have Ben as a son.

Riches that are far more valuable

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 from child to child. 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 parents (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, 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.
. 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. 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.

Papa Warrior Takes You On His Journey

Saving Ben - A Father's Story of Autism provides a unique perspective on autism - the father's, but in this case, not just a father's, but a Papa Warrior. We are so used to hearing from Mama Warriors and more recently those stories of people "cured from autism." Although I firmly believe that many children with autism are being greatly helped and recovered by various treatments, therapies and diets, there are many families who still struggle with the many challenges autism presents. This honest and close to the heart journey of one family shows a new perspective from a male point of view. For so many in the journey with autism the man is "bringing home the bacon" while the mother struggles with the day-to-day challenges with providing the best care and opportunities for their child with autism.

As a person who has worked with children age 8 through adult with severe autism, I have found myself on an extended journey of seeking information. My BEST knowledge came NOT from educational textbooks and case studies, but from the hearts of moms who had lived through autism. These books, such as LET ME HEAR YOUR VOICE, are like SAVING BEN, in that they allow you to more fully understand the hardships and struggles that real families live...the successes, failures, struggles and the joys of celebrating babysteps and huge leaps.

It is from these parent perspectives and the perspectives of those living on the autism spectrum themselves that have enabled me to share (via children's books) what I've learned with typical peers (classmates) of kids on the spectrum. Putting information out into the light - the good, the bad and sometimes the ugly - helps those who are on a parallel journey and helps those of us who are trying our best to understand autism and what families touched by autism experience.

This father's perspective is priceless and worth reading. One of my favorite lines in the whole book is "Though I look forward to more medical breakthroughs, I have learned that hope is not just a new protocol or an emerging medical technology. Hope is in the heart. It is its own reward..."

Joanna Keating-Velasco, Author and Special Education Educator
A Is for Autism F Is for Friend: A Kid's Book for Making Friends with a Child Who Has Autism
In His Shoes, A Short Journey Through Autism

Thought provoking read

Enjoyed the book. Many issues swirling around in my head in regards to subject matter: fathering a disabled child, fighting the medical establishment, good public education for all children, and raising a family in the cultural climate of the American South during the 70s and 80's as a gay man. Multifaceted story and well written.

An Autism Dad Fights to Save His Son!

Author and father Dr. Dan Burns tells the story of saving his son from the isolated and misunderstood world of autism. Dan's approach to recovering Ben employs a full-time systematic approach using ABA therapy and biomedical intervention, making use of the scarce resources of time and money. Despite a fractured marriage, he and his ex-wife put Ben's recovery above their own needs, and strive to provide a consistent environment for Ben. Dan then embarks on researching and recovering the cutting-edge treatments for autism, and refuses to let Ben slip into his own world. This story is the heartfelt, real-life story written from a dad's point of view. Dan Burns is a "warrior" Dad, and stopped at nothing to help his son. This book is a great read, and inspirational, teaching us that we can overcome obstacles with faith, hope and determination.

For anyone raising, caring for, teaching or counseling a child with autism or other disabilities, here is a real life adventure more meaningful than any quest for relics or gold. Here is a parent's search against all odds for hope, for his son.

It's a wonderful book. I read the first half a couple days ago, quitting when I got too tired. I finished reading it yesterday. I intended to finish it in short breaks, but couldn't put it down.

After all the downs and ups and going through the wringer so many times the ending is so relieving, positive, and uplifting. It made me feel good.

'Saving Ben' is an inspiration, a tribute to the power of love and hope and perseverance. Many people will find in it a treasure, I'm sure.

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.

By Sarah E. Burns. Sarah E. Burns, an attorney, is Professor of Clinical Law at New York University School of Law in New York City.

Required Reading for all Parents of Disabled Children

Saving Ben, A Father's Story of Autism by Dan E. Burns
Copyright 2009. Published by University of North Texas Press.

Saving Ben, A Father's Story of Autism was impossible to put down, I could
hardly wait to turn the page and discover the next steps on their journey. For
those of us with no knowledge of autism, this story was shocking and eye opening.
These are the children that were hidden away in the last century and even now
easily discarded to institutions, where all hope for future improvement has been
abandoned. Dan's dedication to his son is remarkable, against all odds, he
continually searched for improvements and cures. His journey has not been an
easy one. Dan never gave up even when his homosexuality became an issue for
future plans with Ben. This story is one of courage and commitment and the
discovery of protocols that helped Ben even when the established medical
community denied any possible improvement for autistic children. Dan's love for
his son is what kept him on target.

I am a mother of teenage triplets, one of whom has a learning disability; we have
travelled the paths of hope and then disappointment as all that was learned was
forgotten the next day. We did allergy testing, diet changes, supplements, similar
to what Dan relates about his journey. Then it was discovered that our son had a
vision problem, vision therapy was used and a year later he could read at age 11.
But there were other issues relating to how the information was processed. There
has been no one simple solution and I am hoping my son will have a high school
degree in two years along with his "normal" siblings. I know the struggles with the
school system and the frustration of wanting your child to fit in with the rest and
not be singled out for ridicule. Parenting a child with disabilities is not an easy
path and requires dedication, love and hope, and Dan sets an example for all of us.
I highly recommend his book, Saving Ben, A Father's Story of Autism.

Sandra, California, July 11, 2009

Courage, Acceptance, and Wisdom

Saving Ben: A Father's Story of Autism tells the story of the author's challenges in raising a son with autism, his struggle between acceptance of his son's life-long disability, and his seemingly quixotic search for a cure. But it is more than just about autism, because one sees in these pages the challenges we all face at various times, challenges of acceptance and understanding, of frustration at the system and at our own emotions and inability to effect the changes we seek. One also finds signs of hope, lessons on how to cope with and rise above adversity. The book reads like a novel, in that it is rich and engaging, gripping the reader on every page with suspense, complex characters, and depth of thought.

-Robert and Dorothy Giansiracusa, parents of two homeschooled children.

Makes you hold your breath

This is an amazing story that at times makes you hold your breath. Although the author of this book intended to help other parents and professionals deal with autism he does much more. He shares his personal story of his struggle with sexual orientation. He exposes the long term devastating effects of child abuse as experienced by his wife and mother of Ben. Finally he lends insight into the stress experienced by any family dealing with a special needs child. As former Executive Director of two major nonprofits in the Tulsa community focused on the needs of children (Tulsa Boys' Home and The Parent Child Center of Tulsa), I applaud Dr. Burns for his brutal honesty and willingness to expose his own successes and failures with Ben and in his life. Once you pick up Saving Ben, you won't want to put it down until you finish every page of this inspiring story.

Extraordinary Chronicle of One Man's Struggle

I was a childhood friend and high-school classmate of Dan Burns, the author of Saving Ben, but that is not why I recommend this book. I recommend it because it is an extraordinary chronicle of one man's struggle-an unimaginably difficult and painful struggle-to deal with the forces that threatened to take away his humanity.

"Saving Ben" is really three stories. The primary story describes Dan's dawning realization that his son Ben is autistic, how he dealt with that realization, and his incredibly tenacious efforts over many years to find some way-any way-to save Ben, to enable him to function and to get beyond the stereotypes of the day's view of autism. The second story, whose threads are tightly bound into the other two, concerns Dan's coming to grips with the implications of his homosexuality. The third story, another thread that runs from the beginning to the end of the book, details the ramifications-for Dan, Ben, and Dan's wife Susan-of Susan's having been sexually abused as a child. The second and third stories might have been better told in separate volumes: after reading the first chapter, I wasn't sure which story would dominate this book.

In spare, and what is sometimes eerily cool prose, Dan narrates the events, decisions, and actions that shaped his response to the facts of these intertwined, compelling stories. People who have dealt with a challenge akin to one of Dan's challenges can perhaps more readily appreciate the magnitude of Dan's ordeal. As the parents of two grown daughters who also fall well outside the "normal" in very different ways, my wife and I have some idea of how children such as Ben force us to re-examine what we believe is important, challenge us to understand what it means to be human, and, inevitably, make us humble.

After reading the book, I was left-as I think most readers will be left-with these overwhelming questions: How did Dan Burns survive these onslaughts on his very humanity? How could he continue to cling to his vision of "Saving Ben"? And how would I have fared under those circumstances?

Powerful and inspirational -- a must read

Powerful and inspirational, Saving Ben is the story of one father's journey to hell to rescue his son from the grips of autism. As a mother of a formerly autistic child, I could not put this book down. Filled with triumph and tragedy, Dan Burns tells it like it is, raw and real and with brutal honesty. For him, as for many of us, "failure is not an option." Armed with this attitude and the guts to do whatever it takes to save his son against all odds, miracles occur.

Riveting

From the first page, I was riveted. I had once lived in a small east Texas town called Winona. A toxic waste disposal company, Gibraltar, injected nearly every chemical on earth down an open-ended well shaft a mile deep, dispersing the chemicals for miles in every direction, under schools, homes, farms and ranches in the area. I resolved to form a grassroots organization to fight and close the dangerous facility that our community believed was responsible for many of the birth defects, cancers, stunted growth, spontaneous nose bleeds, holes in the heart, respiratory problems and more, that Winona's children suffered since the toxic dump came into our town.

Like Dan Burns, I thought our government representatives, school district, and medical profession would be eager to help afflicted children. Not so. Winona residents had been denied information and protection for ten years before I'd gotten involved. In Saving Ben: A Father's Story of Autism, Dan Burns tells a similar story. He fights bureaucracy at every level in his quest to save his son. He's told it's impossible. I was told the same thing in Winona.

Dan Burns and I both found that the impossible sometimes just takes a little longer. I saw the toxic dump in Winona close, and Dan wrenched a miracle from the train wreck of Ben's life and his own. In the book, he bares his soul, his accomplishments and failings, his sexual orientation, and his love for his wife and three children as he struggles to recover Ben.

Autism is epidemic in this century. Whether it has touched your life yet or not, I believe you'll become as engrossed in this book as I was. I simply could not put it down.

No text was provided for this review.

No text was provided for this review.

No text was provided for this review.