5 of 5 people found the following review helpful:
5.0 out of 5 stars
A fantastic and powerful story of love and fighting for life, August 21, 2009
This review is from: Saving Ben: A Father's Story of Autism (Mayborn Literary Nonfiction Series) (Hardcover)
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
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4 of 4 people found the following review helpful:
5.0 out of 5 stars
"Riches far more valuable in the long run.", September 7, 2009
This review is from: Saving Ben: A Father's Story of Autism (Mayborn Literary Nonfiction Series) (Hardcover)
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.
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4 of 4 people found the following review helpful:
5.0 out of 5 stars
When love comes in an unexpected package, September 3, 2009
This review is from: Saving Ben: A Father's Story of Autism (Mayborn Literary Nonfiction Series) (Hardcover)
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.
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