Saturday, September 24, 2016

What About the Boy? by Stephen Gallup (Book Review #47 of 2016)

What About the Boy - A Father's Pledge to His Disabled Son

This book is the best portrait of what it is like to be the parents of a special needs child that I have ever seen; I recommend it for those who want an insight into that world. I saw so many people I know in the feelings expressed by the author. I read Ron Fournier's book Love That Boy subsequent to this one, and I recommend that one over this one as a real contrast in approaches to dealing with a special needs son.

My son is high-functioning on the autism spectrum, which puts us into contact with parents similar to the author, who have kids with more limited ability to express themselves, or who run away, or lash out, etc. Many are tired, look old beyond their years. They've literally given their lives for their children, fighting every battle against "the system." Many have spent much of their salaries and are grateful for donations, running from one possible diagnosis or potential new cure to the next, in desperate need of respite care for themselves. For me, this book brought back a lot of memories of what it was like to be the father of an infant where you question everything you're doing, to being the parent of a young autistic child where you second-guess everything you've done. "What could we have done differently? What if..." "What about the boy?" is the question others ask, or that you ask yourself, when discussing career goals, aspirations to move to a new city, etc. The question is always in the back of your mind, even if left unspoken.

Joseph was born in 1985, oversized and needed suction in the delivery. While he had no bruises, a brain scan later showed an issue. The Gallups ask questions of doctors involved in their pre-natal care-- what did you know, and when did you know it? He is a vulnerable infant, deeply loved by his parents. His father, Stephen, is an engineer bent on treating his son's condition as a problem to be solved rather than a condition to be accepted. Judy, Joseph's mom, had a background in special education and was somewhat aware of what to expect, what ways to measure development. Every issue with the child is a worry or a crisis-- is this normal behavior or the disability? When will he talk? How late is unusual for X or Y to happen? Every parent worries about how their child measures up to the milestones printed in books and on charts in the doctor's office, the Gallups are no different.

Like all parents, the Gallups ask "Why us?" Is it something we deserved? Is it karma? Where is God in the midst of disabilities? They find groups for parents and try to find other means of support. They find a Unitarian church that is willing to help raise money for treatments later. Stephen eventually gets into Kenneth Copeland's "prosperity-gospel" and positivism. Religion, like the wholistic therapies they pursue throughout the book, becomes something they experiment with. They ask big questions-- is wellness a birthright, or should we be fatalistic about disabilities? I believe the Gospel (of Jesus, not Ken Copeland) speaks deeply to these issues. We are all born with different bodies, different brains, different abilities and limitations. But the Gospel reminds us that our bodies suffer, and ultimately die, as a result of sin. But there is an eternity in which all of the suffering and scarcity is made right and complete, because Jesus paid the ultimate sacrifice for our sins and His physical resurrection is the proof that this sacrifice was sufficient. There is a limit to the happiness and peace we can find in our short life here, but limitless joy and peace thereafter.

The family almost panics when Judy thinks they are looking at an autism diagnosis. This was pre-Rain Man and little was known, autism was seen by Stephen as a debilitating curse, "a heavy cross to bear." Joseph seems to qualify for a number of diagnoses depending on which version of the DSM you use.

They begin to attend the Institutes for the Achievement of Human Potential in Pennsylvania, whose methods and treatments for brain-injured children are controversial and rigid.
They begin a regimen of all-day patterning and masking. Patterning is moving Joseph's limbs to a rhythm to seemingly mimic movement and exercise. Masking is where Joseph wears a rebreathing mask to increase his carbon dioxide intake. These sound tortuous, but are highly stressed by the Institutes. These and other therapies are highly criticized in the scientific community, but the scientific community offers little to parents like the Gallups. They write a plea to their neighbors for volunteers to help in their home as it takes multiple people to hold the child. Joseph's condition coincides with one of their parents dying of Alzheimer's, which leads them to much of the lack of medical and scientific knowledge about the brain. The Institutes require hefty fees, regular contact with staff, trips to attend lectures and seminars, and strict adherence to the regime in order to remain with the Institutes. People come from all over the world to attend. The stress is obvious, one Institutes mother kills her disabled son in a fit of depression. You get a picture of parents desperate to make a brain-injured child "normal." That appears to be Stephen's obsession, and while Joseph is loved, Stephen never comes across as willing to accept his son as anything less than neurotypical, which is quite sad to me. I hate to be critical, but reading this memoir's conclusion where he is still always experimenting with the next new diet, treatment, etc. no matter the cost to Joseph is a bit disturbing. (Again, see Ron Fournier's book as a contrast.) The Institutes allow for "honeymoons" for the parents without their children when they achieve certain milestones.

The efforts at patterning and masking appear to pay off; local TV news films their work, their plight, and shows the progress of Joseph with testimonials from their volunteer neighbors. His talking and getting mobile are big deals. This helps them raise some volunteer help and donations to fly to the Institutes from California. Joseph eventually begins to walk, talk, laugh, and swim. By the end of the book, Stephen admits that it's impossible to know what "works" and what doesn't, everyone is different and many times they felt something was "working" because Joseph would be happy or speak in paragraphs, he does not do so consistently.

While complying with the rigor of the Institutes, they learned to be "dynamic" and not cookie-cutters. To encourage others in their treatments. Stephen writes that caring for Joshua literally took Judy's life-- she is diagnosed with cancer and dies before Joseph is even a teenager. Reading between the lines of the epilogue, Stephen seems to be coping with the loss of Judy, one way he coped was with an extended trip to China in which he met a woman who decided to keep Joseph for an extended period while Stephen goes back to the US. She raves about Joshua's progress after acupuncture, but Stephen notes that the results seem to be superficial and temporary, like everything else. He still attends autism conferences and notes the effort to try one new big initiative every year. Stephen is now 18. As I mention above, my perception is that Stephen was never really able to accept his child for who he is and continues a quest for some type of cure to make Joseph the same as him. If Joseph is autistic, Stephen never seems to explore that perhaps the cause is genetic and maybe Stephen is somewhere on the spectrum himself. His bio would seem to indicate that possibility.

In all, I give this book 3.5 stars out of 5. There's no better book for understanding the lengths a parent will go through for his children, and a great view of the uncertainty and determination about special needs parents seeking solutions. But the mind-numbing obsession with a "cure" is a bit much. I recommend Ron Fournier's Love That Boy first.

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