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Book Review: Saving Ben by Dan E. Burns

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Benjamin Burns was born mid August in 1987. His proud father remembers Ben’s rather large head, thinking it probably concealed a huge brain. More than likely, “my third child, my beloved son,” would develop to be an intellectual prodigy of some kind.

After two days at home with incessant crying, Ben’s father, Dan, asked his wife, “Do you think the hospital would take him back?” Little did either parent know that Ben’s shriek like screams would become part of their everyday life for a very long time.

Thinking Ben’s wailing occurred because he was hungry and would not nurse, his parents switched from breast feeding to baby formula. Rejected! Ben spit up the formula as he had breast milk. Next came Enfamil with limited success. What baby Ben didn’t spit up, he burped up. Proper nutrition became an ongoing battle in Saving Ben.

Dan attempted to rock his son to calm him. Only the most aggressive bouncing and rocking helped sooth the baby, and then for a very limited time only. Dan explains how tossing Ben high in the air could sometimes quiet him.

The author relates that he held the shrieking baby on the lid of a washing machine during its spin cycle, hoping the violent machine vibrations and noise would bring the child and himself some relief. Dan reports how Ben looked into his eyes with such pathos that he remembers telling himself, “I will always love you. I will never abandon you.”

Eventually, some of Baby Ben’s cries were traced to ear infections and colic. Of course, treatment helped stop each bout, but the ear infections recurred with an unnatural frequency. Each brought about a series of pained crying periods.

Dan noticed in one of Ben’s quiet moments when he sat by the TV that his son was staring incessantly at the sweeping radar hand on the Weather Channel. He wondered how his son could stay so mesmerized with such a dull activity. At least it quieted him.

As if Ben’s incessant screaming was not enough, Dan and his wife noticed other oddities about their son. After learning to walk, the boy would run about the house on the balls of his feet, toes tucked under, carrying an object he’d found. It appeared the boy had no interest in the object be it a toy or a coat hanger.

Ben would simply hold it out, then run until he hit one wall, then turn and dash to another. This compulsive activity often continued until one or the other parent physically stopped him. Saving Ben also tells of the youngster’s fascination with his diapers which he would pull at and chew on even when soiled.

The few words and skills Ben learned within the first two years of life began to disappear. In between loud screams and wails, the boy would sit, vacantly staring into empty space, his arms held partially outward, his hands dangling downward from limp wrists. Dan explained, “My son was vanishing before my eyes.” He lost any recognizable speech sounds he'd learned.

Often Ben would sit trance-like for long periods of time as long as his father remained in place. But since Dan worked from home so that his wife could continue her job, if he dared get up to use the phone or the bathroom, baby Ben would begin his ear piercing tantrums.

Of course, any day care program was a disaster. Ben could not sleep during nap time. Nor could he stop wandering about the room, screeching. The other children could nap. The simplest of verbal commands went unheeded as if he didn’t hear them.

As time went on, program after program left Ben further behind. His diagnosis followed him from bad to worse: developmentally delayed, disturbed, retarded, autistic, severely autistic.

When Ben was five, Dan read about Dr. Lovaas’ treatment methods for younger autistic children (The Me Book written by Dr. Lovaas in 1981). After memorizing the system, he tried the same behavioral techniques with Ben and met with immediate success but only with extremely simple tasks. He would reward his son with grapes cut in half. He taught Ben to sit, stand, buckle his seat belt, urinate in the toilet, put on his shoes, button his shirt, etc.

His Lovaas behavior reinforcement met with much resistance from his wife and Ben’s grandmother who initially refused to follow such procedures. They thought Dan was being too demanding and strict: “The poor child. You’re harassing him. Don’t push him. Let him be!”

How Dan himself managed to remain psychologically sound under tremendous psychic pressure and what success he had Saving Ben is the intriguing story detailed in this well documented, highly descriptive book. Dan’s prose clearly describes a severely autistic child. He holds nothing back. He mentions a time when he found Ben in his room, gleefully playing with his own feces, smearing them on the bed covers and wall.

Would Dan eventually break under the strain and give up on his son. Not an option! Throughout Saving Ben, he explains how he tried a multitude of methodologies including prescriptive drugs and chelation (mayoclinic.com/health/autism-treatmenttherapy) to help Ben become more normalized. His fondest wish was to see Ben achieve—to see him looking and acting like normal boys his age.

Sadly, as Ben grew older, Dan began to internalize reality: His son could never learn to be like other boys. There was no key to unlock autism. But damn fate! The man vowed to teach Ben what he could. He would make Ben as happy and as independent as humanly possible.

I would recommend Saving Ben as an enlightening book for every reader including high school and college students. It will surely stir your heart. In gut-wrenching detail, it will show you the horrific daily problems Dan faced raising his son. You cannot help but fall in love with Ben, a hapless youngster locked forever in what must be a frightening, maybe even maddening, world with no escape.

What's more, you will be awed because of the astonishing will power that drove Ben’s father to give up so much of his own life, hunting a fix for his son. Like me, you will come away from Dan's story asking, “What could I have done as Ben’s father? What would I have done after years of distress with little success?

Early on in the book, one of Ben’s doctors told Dan to save his money for Ben’s eventual institutionalization. Not an option! The breadth of audacity — the outright guts to never give up — is monumental in this tale. If asked today, why did (do) you do it? I think Dan would answer from his heart: “Because Ben is my son and I love him!”

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About Regis Schilken