Book Review – Saving Ben: A Father’s Story of Autism by Dan E. Burns

 

Dan Burns’ memoir- “Saving Ben: A Father’s Story of Autism” has struck a chord in the autism community. It is no surprise that the book has reached Amazon Sales Rank as #1 Special Needs category in September 2009-the story touches readers on many levels. Obviously it is sad that Ben was diagnosed at three years of age with a profound developmental disability, so profound that doctors recommended institutionalization. However, it is uplifting to read of the monumental parental intervention dubbed- “The Ben Project” that transformed Ben from a nonverbal child who put all objects into his mouth and ears, smeared feces, screamed from sensory overload and fled at every opportunity into a young man who could crack a joke, knew his left shoe from right, brushed his teeth and held down a job at Walmart as his aide supervised. Proud papa Burns has even posted a YouTube video showing Ben bowl a strike.

Saving Ben is an intensive read that raises complex questions. It is well known that the stress of raising a special needs child can destroy a marriage, cracking the foundation of teamwork needed to navigate through the educational and health care system. So- what happens when Burns is forced to cope with a mentally ill wife, put a career-not to mention income- on the back burner and take on what is traditionally a woman’s role? Readers will learn how the author channels his denial and anger-that began with punching holes in the wall, yelling and drinking- into taking action.  Burns is a role mode for survivors.

Women readers may be asking-“Well, we do this all the time and it’s the men who get all the credit when they come along and do a decent job”. A point well taken! However, reading about the Ben Project interventions that have included: mind boosting supplements and vitamins, casein and wheat free diets, phototherapy, a Clonidine patch (usually used to treat hypertension), immunoglobulin infusions (used to treat immune deficiencies), chelation to remove toxic metals, Applied Behavioral Analysis (ABA) and sensory integration therapy-shows that Burns is no ordinary caregiver. He has stopped at nothing to save his son and this is a special story of love and persistence.

Today Ben is 22 years old and has aged out of the educational system. If Burns were to write a sequel-it might be titled “After the School Bus Stops Coming” because both he and his son are now coming to terms with losing the support and structure that lasted almost two decades. As an occupational therapist I am most interested in the next stage. Will Ben continue to develop skills at a day habilitation center or sheltered workshop? Can he make new social connections while living in a group home? Will lack of funding force a father to become permanent caregiver and is this a reasonable societal expectation?
“Saving Ben” is more than a well written and gripping story. It raises many important questions. Writing the book may have also saved the author’s mental health- as does his mission to make society examine the causes of autism and their connection to environmental degradation. I encourage Burns to keep writing, sharing, provoking and leading as his journey continues. Parents and all of us concerned with social issues will reap the benefits of his labors.


Barbara A Smith, M.S., OTR/L has worked with children and adults with developmental disabilities for over 30 years. She currently works in a hippotherapy setting where she uses the horse as therapy tools to help children with developmental disabilities. Ms. Smith is the author of The Recycling Occupational Therapist (Pro-Ed, Inc.) –a guide for designing and fabricating therapeutic activities for individuals with developmental disabilities and Still Giving Kisses: A Guide to Helping and Enjoying the Alzheimer’s Victim You love (Lulu.com). Her new book- From Rattles to Writing- A Parent’s Guide to Hand Skills (Therapro, Inc.) is due out early 2010. Learn more about developmental disabilities and Barbara Smith’s work by visiting: BarbaraSmithOccupationalTherapist.com.

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