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.
