Blogs by Eileen Clemens Granfors
Review of "Saving Ben"
9/29/2009 8:19:37 AM
Autism takes a toll on families as a unit and as individuals. Here is an honest story of one man's journey with his son.
Reviewer’s note: My grandson, now 4, was diagnosed with autism just after his second birthday. I have a vested desire to know more about all treatments and the day-to-day struggle of other families raising autistic children.
Saving Ben by Dan E. Burns rises above other books about autism in its honesty. Ben was a difficult baby, who seemed to be developing more or less normally, until he quit talking and began withdrawing into his own world. By age 3, Ben had become an out-of-control, non-verbal, resistant danger to himself and his caregivers.
Burns’ portrayal of the devastating toll on himself, his marriage, his work, and his life as Ben’s behavior regresses is one of the first detailed accounts I have read in which the grief is genuinely portrayed. Grief, in all its stages, the denial and the anger, the sadness and the plan to move on, are clearly detailed.
Burns writes of his choices as he works to recover Ben. The medical establishment is of no help. The school district becomes an enemy. Ben’s own mother, Sue, unstable and fighting psychiatric issues, cannot continuously help to maintain the schedule that Ben must have adhered to. Like so many other couples with an autistic child, Sue and Dan Burns divorce, causing more chaos in an already chaotic life. That Dan Burns is gay seems the least of his challenges.
I liked the way Mr. Burns does not turn himself into a martyr or a know-it-all. He tries, and he fails. He tries something else. Sometimes, he quits. He comes back again to try again. He uses all the resources available to him and to Ben. He fights with family members who see operant conditioning (Lovaas’ methods) as child abuse. He fights with “experts” who tell him to institutionalize Ben. He is helped by his own stubborn will and several key teachers and aides. Although not deeply religious, Dan does find help through his faith and the ability to let Abba (God) decide his path.
If I did not already know about DAN! Doctors, IEP’s, hyperbaric chamber treatments, loose gut, chelation, gluten-free diets, and the attack on systemic heavy metals, I might have been lost in the language of autism treatments.
Nevertheless, this is a book of both hope and acceptance. Ben and his father weather the storms of the hundreds of hours of testing, the thousands of hours of breaking a task down and rewarding each step. Ben begins to speak again in small bursts. The little boy grows into a twenty-one year old man.
That man will never be one “indistinguishable from all others of his age,” but he is a happy man with a father who loves him. Together they share the simple joy of bike rides, music, and television. Ben allows hugs.
Dan allows himself to see that life will never be the one that he planned as he wished upon a star for this baby’s birth. But their lives together do have meaning. The outcome is not what he expected, a “fixed” or completely recovered child. The outcome is progress in baby steps and finding joy in the moment, a lesson for all people everywhere.
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