What About the Boy?: A Father's Pledge to His Disabled Son (A true story about relationships and health within a family helping their developmentally disabled child)
“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.