Carmel Valley: Father recounts struggle to find wellness for his developmentally disabled son
By Arthur Lightbourn
For technical writer Stephen Gallup and his wife, Judy, life changed dramatically with the birth of their developmentally disabled son, Joseph, 26 years ago, in San Diego.
Nobody knew what caused Joseph’s disability.Doctors, in 1985, could offer no definitive answers or plan of action.
Perhaps a toxin had invaded his mother’s body before the infant’s birth.
Maybe the long, difficult labor itself was to blame or the resultant suction delivery.
Or maybe the cause was genetic.
Gallup and his wife were told by their HMO pediatrician that a CAT scan indicated that the temporal lobes of Joseph’s brain were smaller than normal.
“That was basically taken as an explanation for anything that was wrong,” Gallup said. “There was no treatment proposed. And we were advised to get counseling so that we could move on with our lives.
“But it’s hard to move on with your life when you have a child that is depending on you and all he could do was cry.”
At home, Joseph cried continually (“It’s colic, don’t worry,” they were told) and thrashed around, as if in pain, on his back in his crib for hours turning his head from side to side and wearing off the hair off the back of his head.
After consulting with physicians for more than a year and concluding that doctors could do nothing to help, Gallup and his wife, a former special education teacher, decided to take matters into their own hands.
Over time, they realized that Joseph was not meeting any of the benchmarks of normal growth. He wasn’t able to crawl or interact normally, much less stand, walk or speak.
“I declared war on my son’s disability,” Gallup recalled.
Gallup describes the efforts made, the victories achieved, the “wrong turns” taken, and the disappointments encountered in pursuit of wellness for his son in the soon-to-be-published memoir “What About the Boy? A Father’s Pledge to His Disabled Son.”
We interviewed Gallup, now 60, a resident of Carmel Valley, father of three and technical writer with Qualcomm, in the editorial offices of this newspaper.
His self-published memoir is scheduled for release in September and is currently available on pre-order from Amazon.com.
The writing of the memoir began as a journal and a form of therapy for Gallup as he and his wife embarked on what was to become an all- consuming mission to attain wellness for their son.
Three years ago, when Gallup read that submissions were being accepted for entry in the San Diego Book Awards competition, he decided to submit the-then completed memoir manuscript in the hopes of at least receiving some “feedback.”
“They told me I was a finalist, and when I attended the Awards, I discovered to my amazement that it had won first place in the Unpublished Memoir category.
“That was the encouragement I needed to go ahead and pursue publishing it,” he said. He formed his own publishing company, Lestrygonian Books, to publish his book.
“This is my statement,” he said. “I may write something else in my life, but this is the one I had to write before I die.”
Gallup was born in Louisville, Kentucky.
Initially, he had dreamed of becoming a physician, like his grandfather. He completed his pre-med studies at North Carolina State in 1973. His father was a chemist so medicine seemed a natural career path for Gallup until his application for med school was rejected after he told the med school’s interview panel that, under certain circumstances, yes, he could favor abortion and euthanasia.
Stung by the derailment of his plans to become a doctor, he earned a master’s degree in English from the University of Virginia in 1977 and became a technical writer in the aerospace industry, initially in Virginia, where he and Judy met and married, and later in San Diego with General Dynamics.
After the birth of Joseph in 1985 and with doctors unable to help, the Gallups sought out other resources outside of their HMO and the regional health center, including an osteopath, a chiropractor, and the controversial Institutes for the Achievement of Human Potential in Philadelphia.
“I was convinced that time was of the essence, that any treatment we implemented would be much more effective if we did it early. So I didn’t want to waste time,” Gallup said.
After the first of several visits to “the Institutes” in Philadelphia, the Gallups launched an intensive “around the clock, seven days a week” home therapy treatment program designed by the Institutes for brain-injured children — using “patterning” manipulation of the child’s arms, legs and head to encourage creeping and crawling; “masking” or breathing into rebreathing mask many times a day to increase cerebral blood flow; and various vision and auditory techniques to teach Joseph to read.
To help carry out the daily, repetitive, time-consuming regimen, the Gallups solicited volunteers from among their friends, neighbors, and anyone willing to help. Donations were also accepted to offset expenses.
Looking back, Gallup said, he is “ambivalent” about his experience with the Institutes.
“They helped Joseph. They certainly did. They told us what to do. We implemented an intensive home program…for a number of years, as a result of which he learned to crawl, he learned to walk, he learned to read, after a fashion, and he learned to swing hand-over-hand on an overhead ladder. He learned a lot of things, but he didn’t get as far as we wanted and he did regress to a certain extent.
“At the Institutes,” he said, “the attitude was: ‘It’s our way or the highway.’ This is dangerous thinking because the people who believe it are not open to potential guidance or information that comes from the outside world…They will be among the last to hear or consider any new treatments…”
After becoming dissatisfied with the extent of Joseph’s progress with the Institutes’ home therapy program, the Gallups pursued a number of alternatives, including regenerative herbal foods, acupuncture, injections of fetal cells, hyperbaric oxygen therapy, and ushering Joseph through a hands-on healing line conducted by ministers of evangelist/faith healer Kenneth Hagin during a Los Angeles prayer meeting where Gallup became born again.
By age 7, Joseph, who had become good-natured and cooperative, was diagnosed with autism. He was placed in a special education class in public school, but made little discernible progress.
“After one year, we took him out of public school and put him in a school specifically for kids with developmental problems,” where he remained until he completed his schooling.
On Nov. 2, 1992, Gallup’s wife, Judy, was diagnosed with cancer. Judy had been the family’s authority on diet and health. “We could think of nothing in our family experience that could have led to this, except unending stress,” he wrote.
“She took all of these misadventures with Joseph very hard. And I think it contributed to her illness,” he said.
“Even if our fight to help Joseph … had led to this,” he wrote, “neither of us could bring ourselves to regret the effort.”
Judy passed away in 1994, when Joseph was 9.
With the shutting down of the San Diego aerospace industry in 1995, Gallup joined Qualcomm and in 1996 he remarried. He and his wife, Song Yi, have two additional children, a daughter, age 11, and a son, age 4.
Today, Joseph lives during the week and since 2005 in a licensed residential home in Chula Vista, spends weekdays in training at an ARC (Association for Retarded Citizens) center and comes home on weekends to be with his family.
Physically, Joseph is strong and healthy. He stopped growing at five feet.
Gallup describes Joseph as “a good companion, rather like a quiet fishing buddy.”
“We take comfort in each other’s presence,” he said. “I miss him when we are apart.”
Several years ago, Gallup heard his son speak his last word.
“We were walking together when he stopped and frowned at the sound of distant barking. ‘Dog,’ he announced seriously, like a toddler.
“I can still hope for more…I will never give up on him.”
Asked if his son knows he has written a book, “I told him. I showed it to him. But he doesn’t look particularly interested. But then again, he doesn’t take time to give you feedback. I think quite a lot of it registers…
“He’s intelligent. His problem is there is a barrier. It impedes input to a certain extent and it impedes output a great deal.
“I think at some point, probably when he was in his early school years, he decided it was just too hard to keep on trying to pierce that barrier because he stopped at some point. He decided he was going to be a certain way because it was just too hard to be anything else…starting around age 5.”
“I don’t want to give the impression that I’m opposed to medical care,” Gallup said. “I don’t want to advise people to reject their doctors; that’s not what I’m saying. I am saying that if doctors do not help patients, and give the impression they are not interested in helping, doctors should expect that patients are going to keep going elsewhere.”
In the epilogue of his memoir, Gallup wrote, “I am aware that our story could be used to reinforce the position of those who said that our cause from the very beginning was foolish…But at the same time, our story points to the conclusion that we as a society must find better answers for development disability. And we need to begin that soon.”
Name: Stephen Gallup
Distinction: A former aerospace technical writer and, since 1995, a technical writer with Qualcomm, Gallup is the author of the soon-to-be published memoir, What About the Boy? A Father’s Pledge to His Disabled Son.
Resident of: Carmel Valley
Born: Louisville, Kentucky. Grew up in North Carolina and Virginia.
Education: B.S. in chemistry and zoology, North Carolina State, 1973; M.A. in English, University of Virginia, 1977
Family: From a previous marriage, Gallup has a developmentally-disabled son, Joseph, now 26. Gallup lost his first wife to cancer in 1994. He and his wife, Song Yi, and have two additional children: Susannah, 11, a student at Ocean Air Elementary, and Braxton, 4.
Interests: Family, writing and reading
Favorite getaways: China to visit his wife’s family and hiking in the Blue Ridge Mountains
Favorite film: “The Accidental Tourist,” based on a novel, by Anne Tyler
Philosophy: “If something is worth doing, you should do it right. But before you do it, you’d better understand why you’re doing it.”
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