Nobody knew what hurt little Joseph. Perhaps some toxin had invaded his mother's body before his birth. Perhaps it was the difficult birth itself. Or maybe the origin of his disabilities was genetic. Whatever the cause, something had gone terribly wrong — but no one was offering solutions or reasonable guidance.
He cried most of the time, and thrashed about as if in great pain. He wasn't learning how to crawl, talk, or interact normally. His parents sought medical help and were told at first not to worry so much. Later, the professionals recommended counseling to help the parents accept reality. Nothing could help their son, and the quality of their own lives was at risk.
Refusal to accept that advice launched an improbable journey that changed their lives forever.
What About the Boy? A Father's Pledge to His Disabled Son chronicles a family's rejection of hopelessness and their pursuit of a normal life.
“I sensed then, and later formulated the conviction that wellness and potential are every child's birthright. And I'm quite sure that society is served when children have it.”
New York Journal of Books
“What About the Boy? is an homage to parental love and sacrifice. . . . It is socially relevant, exposing gaps in American medicine and underscoring the need for all parents to be vocal and vigilant when it comes to their children. . . . a challenging book, filled with tragedy and determination, high expectations and acceptance. It is no easy task to read, but it does let parents in similar circumstances know that they are far from alone.”
Memoirs can be revelatory—they can shine a light into worlds we never could have guessed at, or they can hold up a mirror to our own lives and show us we are really not so alone. Memoirs can also be akin to an endurance race—miles of sameness with a few water breaks. What About the Boy?, Stephen Gallup’s account of raising a disabled son, contains all of those facets.
Despite the author’s obvious command of language and engaging writing style, the story flags in the middle due to an overabundance of detail. You know you are in for a tough read merely by dint of the subject matter, but just because there are hard truths to bear shouldn’t mean there is no dramatic potential.
Mr. Gallup’s son, Joseph, is born with missing structures in his brain. Eventually he will also receive a diagnosis of autism. The author and his wife, Judy, jump into high gear to help Joseph lead as normal a life as possible. They refuse to settle for perfunctory answers from doctors, teachers, and social workers, searching for treatments that will provide hope for their little boy.
Eventually the search leads them to the Institutes for the Achievement of Human Potential, a private facility headquartered in Philadelphia. Mr. Gallup devotes much of the book providing in-depth detail of Joseph’s home-based therapy program prescribed by the Institutes. The bulk of the program consists of the practice of “patterning.” One patterning exercise consists of two or more adults moving a child’s limbs through motions that mimic crawling. Joseph moves on to walking while holding onto the rungs of an overhead ladder that his father builds. He eventually learns to walk on his own.
To say the Institutes’ home-based programs are rigorous is like saying swimming the English Channel is a bit of a strain. The Institutes demand complete compliance with the programs they prescribe. The program consumes several hours out of every day. Parents and children are not allowed to take days off. To vary from the rigid guidelines the Institutes insist on is to risk being kicked out of the program altogether.
Self-selection is at work here. Those parents that are not up to the task drop out from frustration or exhaustion or both. The Institutes can then conveniently claim that failures with the program rest with the parents. This is a dangerous mindset for parents who are already stressed-out and guilt-ridden.
In the Gallups’ case, the program is all-consuming and a detriment to the marriage as well as relationships with family, friends, and coworkers. The author alludes to self-neglect as a contributing factor to his wife’s cancer.
The Institutes have been largely discredited by the American Academy of Pediatrics and other physicians. Critics claim there is no evidence to support patterning is effective.
Mr. Gallup does, however, credit the Institutes’ program and the hours of patterning with helping his son learn to walk.
Amid the Gallups’ struggles, there are heartwarming anecdotes of volunteers who help with Joseph’s program. Indeed, following the program would not be possible without outside help. At first, the book seems to be a shill for the Institutes—like reading an extremely long brochure.
Gradually the tone changes as Stephen and Judy Gallup drift away from the Institutes and explore alternative therapies and rekindle their faith. Looking back, we can see that Mr. Gallup has offered an unflinching look at the Institutes.
There are other huge developments in the family’s life that are treated almost as a coda to the main body of work. Giving more attention to these events would have lent a greater balance.
The memoir shines a light on the often adversarial relationships in which parents find themselves with school administrators and teachers, among others, when attempting to obtain services for their disabled children. In this respect, the book is a portrait in courage of two parents who refuse to accept that little can be done for their son simply because established medicine has little to offer.
What About the Boy? is an homage to parental love and sacrifice. Judy in particular, is a rock, unyielding in her advocacy for Joseph, even with her husband. It is socially relevant, exposing gaps in American medicine and underscoring the need for all parents to be vocal and vigilant when it comes to their children.
What About the Boy? is a challenging book, filled with tragedy and determination, high expectations and acceptance. It is no easy task to read, but it does let parents in similar circumstances know that they are far from alone.
It’s also worth mentioning that the author continues to advocate for disabled children through his website and blog, which can be found at www.fatherspledge.com.
Reviewer David Hersman is a filmmaker, writer, and father of a child with autism.
Excepting only the death of a child, every parent's nightmare might be the birth of a child with a disability. But most parents of special children find that love gives them the extra determination not only to cope but to help their child thrive.
One such dad is Stephen Gallup, a resident of San Diego whose son Joseph is autistic. In "What About the Boy? A Father's Pledge to His Disabled Son" (376 pages, Lestrygonian Books, $13.95), Gallup relates his story as he and his family "paved an uncharted path to provide help for our challenged son. The medical professionals advised us to give up hope and seek counseling. Alternative therapists offered radical treatments. All my wife, Judy, and I knew was that our son was in agony and that we were ready to do and try anything that might bring him peace — and perhaps also enable him to walk, talk, and interact with some normalcy."
A story of intermingled triumph and tragedy, "What About the Boy?" will touch not only those who have dealt with autism or any other disability but also those who have been spared those agonies. In life, agony comes to most of us, but Gallup's book is a testament to living.
There is no normal
I expected this book to make me cry. I did not expect it to make me mad. As I read about the Gallup's struggle to find answers for their son, I was so disgusted by the mainstream medical world's refusal to, at first, acknowledge anything was wrong, then later, to acknowledge that someone somewhere might know something they didn't.
This is a book about being your child's advocate. It's about pushing past all the "experts" who are basically telling you, "We don't have the answers, so you're not allowed to have questions." It's about parents who were so desperate to help their son that they humbled themselves and asked for help from people they didn't even know. It is not about Super-Parents. Steve is very transparent about just how human they are.
One thing that Steve and I agree on is that every child should be allowed to reach his full potential. He mentions one father who told him that if he had to choose between his child being low-functioning but full of the understanding that she was loved completely, or a “normal” child who didn’t feel loved, he’d choose the low-functioning. Steve (and I) wondered why the two were mutually exclusive. We’re not talking about making a child feel like he is less of a person or that he is damaged goods. We’re just talking about making the effort to do what we can to help our children function at as high a level as they are capable of.
I found it interesting that back in 1989, the program that the Gallups used to help Joseph reach his full potential used some of the same methods I’ve seen in “alternative” programs in use today. Alternative programs that are working. As Steve says, “We’d seen enough to know that the answer for one kid may be unrelated to what works for another, that very seldom is any answer complete, and that there’s no escape from guesswork. The only feature the various success stories shared was a willingness of each family to reject experts who would not help.”
I did cry three times while reading the book. The first time was reading about all the amazing volunteers who had stepped up to help with Joseph's program, almost all of whom were complete strangers at the time. The second was when an Institutes staff member told the Gallups that the whole staff went out for ice cream to celebrate when they got the call telling them that Joseph was walking. At that meeting, the staff member also told them, "Joseph deserves to be told how great he is." (I'm quite sure Joseph was getting message loud and clear from his parents.) I also cried at the end of the book, but you'll have to read it to see why.
This is the story of an amazing family. Parents who were willing to make great sacrifices for their son, and a son who was strong enough to do what the “experts” said he couldn’t do. I won’t say it’s an easy read because there is some emotion involved, but it’s well-paced and well-written. I highly recommend this book to everyone, especially parents.
Reader Reviews for "What About the Boy? A Father's Pledge to His Disabled Son"
Reviewed by Katie Norris
What About The Boy? by Stephen Gallup is one of the best books I have ever read! I recommend it to all readers, as it is extremely hard to put down! The memoir touches on the unbreakable bond that exists between parents and children. Stephen and his wife were told nothing could be done to help their son Joseph, and to seek counseling to help them accept the reality. Refusal to accept that advice launches the incredible story of how these two parents never gave up hope in finding a cure and help for their son. This is the story of a truly amazing family. Two parents and their son who believed in themselves enough to do what was best for them, rather than let the so-called 'experts' make decisions for them. I believe that What About the Boy? will warm the hearts of all who read it. All parents, especially those who share the same struggles as Stephen and his wife, will find comfort in reading this book; as it sheds light on the difficulties of finding a cure and help for a child, and offers a little encouragement to those who may get discouraged along the way.