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What About the Boy? A Father's Pledge to His Disabled Son
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.
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.
376 pages, Kindle Edition
First published September 1, 2011
About the author
Stephen Gallup
2 books77 followersStephen Gallup has worked for many years as a technical writer. His greatest strength is in sorting through complex and often confusing subjects to expose the basic issues involved, and to show why those issues are important. In addition to his award-winning memoir, What About the Boy?, Steve has written a screenplay, short stories, numerous well-received essays, and even a poem or two.
When not writing, Steve has attempted, with remarkably limited success, to learn how to play the violin and speak Chinese. He enjoys listening to music, seeing new places, and bragging about his amazing kids.
When not writing, Steve has attempted, with remarkably limited success, to learn how to play the violin and speak Chinese. He enjoys listening to music, seeing new places, and bragging about his amazing kids.
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Displaying 1 - 22 of 22 reviews
October 4, 2015
This is not a happy book. Nothing happens in it that elevates your mood and gives you a feeling of real enjoyment, at least not more than momentarily.
So why 5 star? Because it is a true story without the added sweetness of sugar to make it more palatable that so many memoirs feel the need to add. For true it has a bitterly sad ending, but that's how it is.
It is a long review because it is impossible for me to review it without summarising the various methods the parents subscribe to, a kind of synopsis. For an overall review of what I thought of the book, you can skip to almost the end, to the paragraph marked with a *.
______
Two people, at a comfortable time in their lives have a baby, Joseph, that is brain-damaged. They see every doctor from chiropractors to iridologists to psychologists and really they aren't offered much hope. The baby may never walk let alone talk and become independent. I wonder if this is standard behaviour - in their grief at not having a normal child they turn everywhere without discrimination, to anything that offers help?
Eventually they find themselves at the Institute for the Achievement of Human Potential which some people credit with bringing their child alive and most medical sources say is absolute rubbish. Quacks. The Gallups believe in it. To me it seemed to be quasi-religious, cult-like, something like I read of Scientology. It is extremely expensive but if you don't do exactly as they tell you, they can toss you out just by saying so and there is no appeal. I'm not agreeing with the medical establishment on this one, except to say that it is offered as a universal panacea and it isn't, nothing is.
After attending a series of lectures and an examination of the child, the Institute designs courses that last sometimes 24 hours of work a day. Up to 16 hours of physical work with the child, creeping on the floor or outside, 'patterning' - moving the child into physical shapes usually with helpers, breathing exercises, respirators that need adjustment every 15 minutes. They do not allow for any deviation. Judy, the little boy's mother is told off for trying to do housework while her son is eating. Every now and again they have to return to the Institute having filled in a progress report of 36 pages. They are not allowed to see any other therapist (but they do).
The family stand this for years because they see a major improvement, their son walks. They are given such encouragement to continue as they say the programme will overcome the brain injury and he will become 'normal'. They say that school and socialisation is unnecessary and provide not just home-schooling programmmes but also the key to the annual certification that all states demand. Examples of children who have gone to university are given to keep the clients coming back (and paying).
I think the programme has probably helped a lot of brain-damaged children but they cast their net too wide, they can't help every child with the many sorts of injury and genetic problems they might have, but they hold out the carrot that if only you do exactly as they say, your child will one day be on a par with is normal peers. And then if you drop out of the programme because there is no progress or it's just too damn hard and expensive and you can't find a constant supply of free helpers every day, then it's your fault your child didn't achieve normality, not theirs. Clever really, the way they work it.
Eventually, seeing no progress for some years, the Gallups leave the Institute and take up religion instead. They devote themselves to the sort of Christianity that essentially says ask and you will be given if you only ask properly and the more money you give the more God will return abundantly. This doesn't work either and the child is not treated well in Sunday School. Not everyone practices what they were only preaching minutes before! The parents do remain religious although their child doesn't improve.
The mother dies young of cancer, and the father just looks after his child, doing what he can for him and putting him in a special school which he hopes will help his child. Eventually he takes up with a Chinese woman in China who takes the child for six months, seeing an acupuncturist every day. His Chinese girlfriend phones him and says Joseph is talking, really talking! Such a high point for the author! And he has a conversation with him. Joseph says Yes, three times. But that's it for five years no more speech. Is this progress? Is the author beginning at last to question his clutching at straws?
The girlfriend comes to America, they marry and have two normal children, a son and a daughter, but you could tell that the author remains closer to his damaged son, perhaps because he is part of his much-loved first wife. He never, ever gives up exploring every avenue, every new scientific discovery that might help Joseph. Nothing ever works and Joseph sits, flapping his hands, playing with string, loving music, to everyone unreachable in his autistic world. He understands what is said but often it elicits no reaction from him and never speech.
But he's not autistic and science moves on. DNA analysis comes along and it is apparent from all the little things, his short stature, the shape of his fingers, other physical signs, that he has a gene problem probably from just after conception, and not brain damage from a difficult birth.
This doesn't change anything, and there is no diagnosis of what his particular syndrome is, but it's knowledge. And the author, I'm sure, continues on with his search for something to help his most beloved son. I don't know if the IAHP takes this new information into account, since only Down's was really known when the very autocratic and charismatic Glenn Doman formulated the lectures and programmes. Somehow I don't think so. I still think they treat all children as though they could achieve at least 'normality' if not excellence, even though it is built into some of them that they will never achieve even a small measure of independence, as Joseph never will.
*The book was exhausting to read, the pressure put on these people by the Institute and themselves to live entirely for heavy physical work with their child day in and day out for years. It was depressing because only in the recounting can you see, can the author see, just how little progress was made over so long. It was sad because the mother died young of cancer after a hard and quite unfulfilled life. It was hopeless because there is nothing that is going to help Joseph become normal.
Ultimately though, it was uplifting to read of a couple, and then a father alone, who had so much love for their son, that nothing would deter them from trying to give him a place in their world, our world.
But sad.
Written as I was reading the book.
So why 5 star? Because it is a true story without the added sweetness of sugar to make it more palatable that so many memoirs feel the need to add. For true it has a bitterly sad ending, but that's how it is.
It is a long review because it is impossible for me to review it without summarising the various methods the parents subscribe to, a kind of synopsis. For an overall review of what I thought of the book, you can skip to almost the end, to the paragraph marked with a *.
______
Two people, at a comfortable time in their lives have a baby, Joseph, that is brain-damaged. They see every doctor from chiropractors to iridologists to psychologists and really they aren't offered much hope. The baby may never walk let alone talk and become independent. I wonder if this is standard behaviour - in their grief at not having a normal child they turn everywhere without discrimination, to anything that offers help?
Eventually they find themselves at the Institute for the Achievement of Human Potential which some people credit with bringing their child alive and most medical sources say is absolute rubbish. Quacks. The Gallups believe in it. To me it seemed to be quasi-religious, cult-like, something like I read of Scientology. It is extremely expensive but if you don't do exactly as they tell you, they can toss you out just by saying so and there is no appeal. I'm not agreeing with the medical establishment on this one, except to say that it is offered as a universal panacea and it isn't, nothing is.
After attending a series of lectures and an examination of the child, the Institute designs courses that last sometimes 24 hours of work a day. Up to 16 hours of physical work with the child, creeping on the floor or outside, 'patterning' - moving the child into physical shapes usually with helpers, breathing exercises, respirators that need adjustment every 15 minutes. They do not allow for any deviation. Judy, the little boy's mother is told off for trying to do housework while her son is eating. Every now and again they have to return to the Institute having filled in a progress report of 36 pages. They are not allowed to see any other therapist (but they do).
The family stand this for years because they see a major improvement, their son walks. They are given such encouragement to continue as they say the programme will overcome the brain injury and he will become 'normal'. They say that school and socialisation is unnecessary and provide not just home-schooling programmmes but also the key to the annual certification that all states demand. Examples of children who have gone to university are given to keep the clients coming back (and paying).
I think the programme has probably helped a lot of brain-damaged children but they cast their net too wide, they can't help every child with the many sorts of injury and genetic problems they might have, but they hold out the carrot that if only you do exactly as they say, your child will one day be on a par with is normal peers. And then if you drop out of the programme because there is no progress or it's just too damn hard and expensive and you can't find a constant supply of free helpers every day, then it's your fault your child didn't achieve normality, not theirs. Clever really, the way they work it.
Eventually, seeing no progress for some years, the Gallups leave the Institute and take up religion instead. They devote themselves to the sort of Christianity that essentially says ask and you will be given if you only ask properly and the more money you give the more God will return abundantly. This doesn't work either and the child is not treated well in Sunday School. Not everyone practices what they were only preaching minutes before! The parents do remain religious although their child doesn't improve.
The mother dies young of cancer, and the father just looks after his child, doing what he can for him and putting him in a special school which he hopes will help his child. Eventually he takes up with a Chinese woman in China who takes the child for six months, seeing an acupuncturist every day. His Chinese girlfriend phones him and says Joseph is talking, really talking! Such a high point for the author! And he has a conversation with him. Joseph says Yes, three times. But that's it for five years no more speech. Is this progress? Is the author beginning at last to question his clutching at straws?
The girlfriend comes to America, they marry and have two normal children, a son and a daughter, but you could tell that the author remains closer to his damaged son, perhaps because he is part of his much-loved first wife. He never, ever gives up exploring every avenue, every new scientific discovery that might help Joseph. Nothing ever works and Joseph sits, flapping his hands, playing with string, loving music, to everyone unreachable in his autistic world. He understands what is said but often it elicits no reaction from him and never speech.
But he's not autistic and science moves on. DNA analysis comes along and it is apparent from all the little things, his short stature, the shape of his fingers, other physical signs, that he has a gene problem probably from just after conception, and not brain damage from a difficult birth.
This doesn't change anything, and there is no diagnosis of what his particular syndrome is, but it's knowledge. And the author, I'm sure, continues on with his search for something to help his most beloved son. I don't know if the IAHP takes this new information into account, since only Down's was really known when the very autocratic and charismatic Glenn Doman formulated the lectures and programmes. Somehow I don't think so. I still think they treat all children as though they could achieve at least 'normality' if not excellence, even though it is built into some of them that they will never achieve even a small measure of independence, as Joseph never will.
*The book was exhausting to read, the pressure put on these people by the Institute and themselves to live entirely for heavy physical work with their child day in and day out for years. It was depressing because only in the recounting can you see, can the author see, just how little progress was made over so long. It was sad because the mother died young of cancer after a hard and quite unfulfilled life. It was hopeless because there is nothing that is going to help Joseph become normal.
Ultimately though, it was uplifting to read of a couple, and then a father alone, who had so much love for their son, that nothing would deter them from trying to give him a place in their world, our world.
But sad.
Written as I was reading the book.
September 2, 2011
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.
I received this book for free from the author in exchange for an honest review. All opinions are my own.
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.
I received this book for free from the author in exchange for an honest review. All opinions are my own.
February 26, 2025
Full disclosure that the author of this book is my father, so this review is unavoidably biased. For the purposes of this review, I will call him Steve even though that feels weird.
What About the Boy is a very sad book. In every page, you can feel Steve and Judy’s yearning to help Joseph get better. Their goal was always selfless, despite the criticism that they did not embrace Joseph’s disability. The goal was always to get Joseph to a point where he didn’t need his parents anymore. And the persistent effort that this family went through to that end is admirable, inspiring, and almost beyond belief. Joseph could not have had two better supporters. Joseph accomplished remarkable things, despite the fate prescribed to him by his first doctors.
From a storytelling standpoint, this book is exceptionally well written. The glimpses into Steve and Judy’s intimate lives are so vulnerable and real. The pacing of the story is well done. Joseph is depicted in such an accurate, familiar manner that I found passages very hard to read without crying from remembering my brother. I am very grateful that Joseph’s story and memory are preserved in this book.
“Either way, Joseph was leading us to new adventures” (89)
What About the Boy is a very sad book. In every page, you can feel Steve and Judy’s yearning to help Joseph get better. Their goal was always selfless, despite the criticism that they did not embrace Joseph’s disability. The goal was always to get Joseph to a point where he didn’t need his parents anymore. And the persistent effort that this family went through to that end is admirable, inspiring, and almost beyond belief. Joseph could not have had two better supporters. Joseph accomplished remarkable things, despite the fate prescribed to him by his first doctors.
From a storytelling standpoint, this book is exceptionally well written. The glimpses into Steve and Judy’s intimate lives are so vulnerable and real. The pacing of the story is well done. Joseph is depicted in such an accurate, familiar manner that I found passages very hard to read without crying from remembering my brother. I am very grateful that Joseph’s story and memory are preserved in this book.
“Either way, Joseph was leading us to new adventures” (89)
March 23, 2012
First of all I would like to thank the people at Goodreads for giving me the chance to read this great book by Stephen Gallup. I was one of the lucky winners of this book in the Goodreads giveaway. I can say that I am very lucky to have gotten the opportunity to read about Joseph Gallup's life as he was growing up with a brain injury.
March 5, 1985, Stephen and Judy Gallup brought forth into this world a son, Joseph. They couldn't be more happy as this was what they had been waiting so long for. Joseph did have an "irritable cry" and seemed to spit up his feedings quite often; and because of those problems little Joseph had to stay in the hospital a little longer so the doctors could figure out what was wrong. One thing they had learned was that Joseph had missing brain tissue. Now what?
Stephen and Judy addressed several different avenues in search of a diagnosis for their young son. No one seemed to be able to pinpoint anything specific. Finally, it was clear that he was a brain injured child: possibly from the long labor Judy endured, maybe some toxin got into Judy's body before Joseph's birth, or maybe it was genetic. No one gave any reassurances to the couple.
Joseph cried a lot and thrashed about as if he was in terrible pain. He wasn't learning to crawl, creep, talk or interact the way other babies did at his age. All the medical people they contacted told them not to worry so much and just to accept Joseph as he was. Nothing anyone did or suggested helped Joseph. They tried physical therapy and even went to a chiropractor.
Finally, Joseph and Judy Gallup, after going to the library to do a search into what possibly they could do for their child, found books on the brain injured by Glenn Doman-"What to Do About Your Brain-damaged Child". The book covered all the issues: mental retardation, mental deficits, cerebral palsey, spastic, flaccid, rigid, epileptic, autistic, and hyperactive child. This material got the Gallups thinking they should check into the Institutes where Glenn Doman gave lectures and informed families on what they should do for their brain-damaged children. Off they went to Philadelphia where the Institutes were to try to have someone tell them that Joseph one day will be normal and be able to walk, run, talk and just be like the other children.
Stephen and Judy were to learn there was a lot at stake to be able to give Joseph his life back. Many hours were spent doing patterning, breathing exercises, creeping, crawling and the overhead ladder. Many volunteers helped the Gallups with their routines. Judy had given up her job, but Stephen still went to his job each day. The days and the nights were very long as the exercises and treatments had to done around the clock. Not much time left for sleep for Judy or Stephen. They gave so much of themselves because of the love they felt for their son. Many revisits to the Institutes in Philadephia were made so they could be informed of how much progress their son had made and new protocols were given to them to work with Joseph more. Some days Joseph just didn't want to do this.
Joseph did get to the point where he could walk really well and was proud of that. He didn't talk much and when he did it was hard to distinguish what his words were. He did seem fairly intelligent as he could read when asked to pick out different words off of flash cards, but he never spoke them. There were so many guidelines that had to be followed.
I would say after a while the Gallups became exasperated with it all. They tried everything and it didn't seem they were getting Joseph any further along. A diagnosis of Autism finally was attached to Joseph and that was probably why he never talked. He was for the most part a happy child.
All this effort the Gallups put into Joseph's life was rewarding to Stephen and Judy, but it finally came to the point they could no longer keep up the pace they were. Judy suddenly became sick, she had backaches and couldn't sleep well. A diagnosis of cancer was found when Judy went to a doctor to see what was wrong. She went through treatments, but nothing much helped. Eventually Judy succumbed to her disease. Now Stephen was alone to care for Joseph. Joseph didn't seem to realize at first that his mother was never to be around again. It took him some time to figure this out.
What does Stephen do to help Joseph more? How does he cope with the loss of his wife? How is Joseph and Stephen doing today?
I have learned much from this book. I didn't know a lot about brain injured children and it took to get them to be able to function in everyday life. Sometimes it is difficult for health care providers to determine a diagnosis. Some in the medical field feel the brain injured should possibly put into homes or institutions, to use wheelchairs or strollers; but, don't try to help them to function as best as they can. I was disappointed in some of the medical personnel that Stephen and Judy Gallup had dealt with in getting some type of help for Joseph. Where was the empathy?
I congratulate Stephen and Judy Gallup for doing as much as they did to help Joseph. All children deserve all the chances they can get. Love will get you far.
March 5, 1985, Stephen and Judy Gallup brought forth into this world a son, Joseph. They couldn't be more happy as this was what they had been waiting so long for. Joseph did have an "irritable cry" and seemed to spit up his feedings quite often; and because of those problems little Joseph had to stay in the hospital a little longer so the doctors could figure out what was wrong. One thing they had learned was that Joseph had missing brain tissue. Now what?
Stephen and Judy addressed several different avenues in search of a diagnosis for their young son. No one seemed to be able to pinpoint anything specific. Finally, it was clear that he was a brain injured child: possibly from the long labor Judy endured, maybe some toxin got into Judy's body before Joseph's birth, or maybe it was genetic. No one gave any reassurances to the couple.
Joseph cried a lot and thrashed about as if he was in terrible pain. He wasn't learning to crawl, creep, talk or interact the way other babies did at his age. All the medical people they contacted told them not to worry so much and just to accept Joseph as he was. Nothing anyone did or suggested helped Joseph. They tried physical therapy and even went to a chiropractor.
Finally, Joseph and Judy Gallup, after going to the library to do a search into what possibly they could do for their child, found books on the brain injured by Glenn Doman-"What to Do About Your Brain-damaged Child". The book covered all the issues: mental retardation, mental deficits, cerebral palsey, spastic, flaccid, rigid, epileptic, autistic, and hyperactive child. This material got the Gallups thinking they should check into the Institutes where Glenn Doman gave lectures and informed families on what they should do for their brain-damaged children. Off they went to Philadelphia where the Institutes were to try to have someone tell them that Joseph one day will be normal and be able to walk, run, talk and just be like the other children.
Stephen and Judy were to learn there was a lot at stake to be able to give Joseph his life back. Many hours were spent doing patterning, breathing exercises, creeping, crawling and the overhead ladder. Many volunteers helped the Gallups with their routines. Judy had given up her job, but Stephen still went to his job each day. The days and the nights were very long as the exercises and treatments had to done around the clock. Not much time left for sleep for Judy or Stephen. They gave so much of themselves because of the love they felt for their son. Many revisits to the Institutes in Philadephia were made so they could be informed of how much progress their son had made and new protocols were given to them to work with Joseph more. Some days Joseph just didn't want to do this.
Joseph did get to the point where he could walk really well and was proud of that. He didn't talk much and when he did it was hard to distinguish what his words were. He did seem fairly intelligent as he could read when asked to pick out different words off of flash cards, but he never spoke them. There were so many guidelines that had to be followed.
I would say after a while the Gallups became exasperated with it all. They tried everything and it didn't seem they were getting Joseph any further along. A diagnosis of Autism finally was attached to Joseph and that was probably why he never talked. He was for the most part a happy child.
All this effort the Gallups put into Joseph's life was rewarding to Stephen and Judy, but it finally came to the point they could no longer keep up the pace they were. Judy suddenly became sick, she had backaches and couldn't sleep well. A diagnosis of cancer was found when Judy went to a doctor to see what was wrong. She went through treatments, but nothing much helped. Eventually Judy succumbed to her disease. Now Stephen was alone to care for Joseph. Joseph didn't seem to realize at first that his mother was never to be around again. It took him some time to figure this out.
What does Stephen do to help Joseph more? How does he cope with the loss of his wife? How is Joseph and Stephen doing today?
I have learned much from this book. I didn't know a lot about brain injured children and it took to get them to be able to function in everyday life. Sometimes it is difficult for health care providers to determine a diagnosis. Some in the medical field feel the brain injured should possibly put into homes or institutions, to use wheelchairs or strollers; but, don't try to help them to function as best as they can. I was disappointed in some of the medical personnel that Stephen and Judy Gallup had dealt with in getting some type of help for Joseph. Where was the empathy?
I congratulate Stephen and Judy Gallup for doing as much as they did to help Joseph. All children deserve all the chances they can get. Love will get you far.
July 22, 2015
"A moving memoir of love and persistence!"
Overall 4 Stars
Performance 5 Stars
Story 4 Stars
This is a wonderful book that follows a mother and father who have a developmentally disabled son. They are driven by frustration with doctors who can tell them nothing about why their child is the way he is not offer any solutions as to how to help him.
When doctors prove to be of no help the boy's parents seek alternatives to try and help him live a more normal life. When doctors offer no hope the Institutes for Human Potential offers them a plan to help young Joseph progress. This is that story.
Kevin Arthur Harper does a fine job of narrating this book. The ease with which he tells the tale made me think he was relating his own story and not that of Stephen Gallup. BRAVO!!!
This book should be required listening for anyone who has a disabled friend or loved one in their life. It offers no solutions, but is a story about hope!
I received this book from the author in exchange for a fair review!
Overall 4 Stars
Performance 5 Stars
Story 4 Stars
This is a wonderful book that follows a mother and father who have a developmentally disabled son. They are driven by frustration with doctors who can tell them nothing about why their child is the way he is not offer any solutions as to how to help him.
When doctors prove to be of no help the boy's parents seek alternatives to try and help him live a more normal life. When doctors offer no hope the Institutes for Human Potential offers them a plan to help young Joseph progress. This is that story.
Kevin Arthur Harper does a fine job of narrating this book. The ease with which he tells the tale made me think he was relating his own story and not that of Stephen Gallup. BRAVO!!!
This book should be required listening for anyone who has a disabled friend or loved one in their life. It offers no solutions, but is a story about hope!
I received this book from the author in exchange for a fair review!
April 14, 2012
Stephen Gallup takes on the daunting task of writing a memoir with the same passion and perseverance with which he and his wife Judy tackled a series of difficult choices while raising their son, Joseph. The traditional medical community had nothing to offer but discouragement, telling the parents that they should just accept the status quo, that Joseph’s options would always be severely limited.
The story continues through years of hope and bewilderment as the couple decides on alternative treatment for their son. What About the Boy is packed with intimate details, with clear and honest descriptions of the day-to-day life of a father who refuses to give up, who refuses to lower his standards. As you read the story, you feel certain the author is not one to take shortcuts or sugarcoat the truth.
This is a memoir that follows the tradition of the reluctant hero’s journey. The narrator, when catapulted into unknown territories, charts his travails. The story follows sacrifices, tribulation, small and huge triumphs, and the countless noble and generous deeds of those who want only the best for Joseph.
The story continues through years of hope and bewilderment as the couple decides on alternative treatment for their son. What About the Boy is packed with intimate details, with clear and honest descriptions of the day-to-day life of a father who refuses to give up, who refuses to lower his standards. As you read the story, you feel certain the author is not one to take shortcuts or sugarcoat the truth.
This is a memoir that follows the tradition of the reluctant hero’s journey. The narrator, when catapulted into unknown territories, charts his travails. The story follows sacrifices, tribulation, small and huge triumphs, and the countless noble and generous deeds of those who want only the best for Joseph.
October 6, 2012
I enjoyed this book. It is well written and although one might be tempted to think the subject could become dull it is a book that holds your interest until the end. It is also edifying. The parents, Steve and Judy, are relentless in trying every possible avenue to have Joseph have a normal life. And it is not a mindless search but an intelligent approach to a very difficult problem which involves a dedication on the part of the parents which not many people would persevere in as they did.
September 24, 2016
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. https://www.iahp.org/about-the-instit...
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.
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. https://www.iahp.org/about-the-instit...
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.
February 1, 2013
A pledge fulfilled...
Steve and Judy are a young American couple starting out in life. They're college-educated, middle class, responsible, upbeat. They have a child and before they take the baby (Joseph) home, they are told that he has an abnormal brain structure. Then the baby doesn't achieve to the normal markers (movements, attempts to crawl, to turn over) at the normal time junctures. The reader can't help but get caught up in this memoir as Steve and Judy go from doctor to doctor in a fruitless search for answers as to what exactly is wrong with their son and how it should be treated and overcome. The doctors they encounter seem to counsel only acceptance or a `wait and see' (how he progresses) philosophy.
But Steve and Judy are fighters. They refuse to accept these healers' low expectations for their son and so they seek out alternative treatments. They hear of a place where great strides have been made in helping brain injured children. A trip to the Institutes for the Achievement of Human Potential in Philadelphia ensues. Steve and Judy come away from their orientation at the Institutes with hope AND, more importantly, a plan of action. Steven Gallup's powerful memoir propels you along as he and his wife Judy embark on the mission that the Institutes has crafted for them to bring their son to wellness. The Institutes believes that children such as Joseph can progress to a point where they catch up with `healthy' children. As I followed Steve and Judy in their efforts on Joseph's behalf I was impressed with their strength and determination, but troubled by how expensive and time consuming the program was for them and other parents of brain injured children. I was also troubled by what seems to be cult-like behavior and talk at the Institutes', with some parents parroting Glenn Doman or other trainers words and maxims. However, despite my misgivings, the Institutes relentless regimen of creeping, crawling, re-breathing maskings, crawling ramps and overhead ladder training all pay off big time when Joseph begins walking.
After the exhausting Spartan-like campaign Steve and Judy pursued to achieve this breakthrough, they take a well-deserved `time out' and slow down. This interlude was, for me, the most powerful part of the memoir: Steve and Judy get word that Lidwina, the most helpful of the trainers at the Institutes, has quit in what sounds like some kind of clash of wills. Joseph's progress seems to slow and he starts public school for learning-disabled children. Judy gets sick, perhaps from all the strain. This is a memoir, and life foreshadows what is to come. Judy is forced to live for herself again as she begins her healing. Steve and Joseph also start to relax and savor life more. Joseph learns some skills at school, notably how to point to a menu board of icons to indicate his wants, something the Institutes, as Steve knows, would never approve of and would see as, `accommodating to the disability.' Steve joins a men's support group of fathers of disabled children. But too many of these fathers seem to give up, putting their kids in wheel chairs and losing themselves in front of the TV, beer in hand. Steve drifts away in seeming disgust.
This honeymoon slowdown ends as the family gears up for the next big campaign -- to get Joseph to speak. Soon the reader begins to sense that...
Much more happens in this riveting account, but I don't want to give anything away. This is life, not fiction, and it's life lived to the maximum. As someone says in this sad, but motivational and true story, `you have suffered greatly... so have I. That makes us simpatico.' At the end of the book you'll be more familiar with the truth of the old saying, that which doesn't kill you makes you stronger.
A wonderful true story of love, heroic struggle, and coming face-to-face with the Great Mystery.
Steve and Judy are a young American couple starting out in life. They're college-educated, middle class, responsible, upbeat. They have a child and before they take the baby (Joseph) home, they are told that he has an abnormal brain structure. Then the baby doesn't achieve to the normal markers (movements, attempts to crawl, to turn over) at the normal time junctures. The reader can't help but get caught up in this memoir as Steve and Judy go from doctor to doctor in a fruitless search for answers as to what exactly is wrong with their son and how it should be treated and overcome. The doctors they encounter seem to counsel only acceptance or a `wait and see' (how he progresses) philosophy.
But Steve and Judy are fighters. They refuse to accept these healers' low expectations for their son and so they seek out alternative treatments. They hear of a place where great strides have been made in helping brain injured children. A trip to the Institutes for the Achievement of Human Potential in Philadelphia ensues. Steve and Judy come away from their orientation at the Institutes with hope AND, more importantly, a plan of action. Steven Gallup's powerful memoir propels you along as he and his wife Judy embark on the mission that the Institutes has crafted for them to bring their son to wellness. The Institutes believes that children such as Joseph can progress to a point where they catch up with `healthy' children. As I followed Steve and Judy in their efforts on Joseph's behalf I was impressed with their strength and determination, but troubled by how expensive and time consuming the program was for them and other parents of brain injured children. I was also troubled by what seems to be cult-like behavior and talk at the Institutes', with some parents parroting Glenn Doman or other trainers words and maxims. However, despite my misgivings, the Institutes relentless regimen of creeping, crawling, re-breathing maskings, crawling ramps and overhead ladder training all pay off big time when Joseph begins walking.
After the exhausting Spartan-like campaign Steve and Judy pursued to achieve this breakthrough, they take a well-deserved `time out' and slow down. This interlude was, for me, the most powerful part of the memoir: Steve and Judy get word that Lidwina, the most helpful of the trainers at the Institutes, has quit in what sounds like some kind of clash of wills. Joseph's progress seems to slow and he starts public school for learning-disabled children. Judy gets sick, perhaps from all the strain. This is a memoir, and life foreshadows what is to come. Judy is forced to live for herself again as she begins her healing. Steve and Joseph also start to relax and savor life more. Joseph learns some skills at school, notably how to point to a menu board of icons to indicate his wants, something the Institutes, as Steve knows, would never approve of and would see as, `accommodating to the disability.' Steve joins a men's support group of fathers of disabled children. But too many of these fathers seem to give up, putting their kids in wheel chairs and losing themselves in front of the TV, beer in hand. Steve drifts away in seeming disgust.
This honeymoon slowdown ends as the family gears up for the next big campaign -- to get Joseph to speak. Soon the reader begins to sense that...
Much more happens in this riveting account, but I don't want to give anything away. This is life, not fiction, and it's life lived to the maximum. As someone says in this sad, but motivational and true story, `you have suffered greatly... so have I. That makes us simpatico.' At the end of the book you'll be more familiar with the truth of the old saying, that which doesn't kill you makes you stronger.
A wonderful true story of love, heroic struggle, and coming face-to-face with the Great Mystery.
November 3, 2011
So I decided I had to read this book and I think I went through every emotion there is reading this book. Their are the triumphs and happiness and joy when Joseph succeeds at a goal set for him by The Institute, and there are also disappointments, and despondency when he seems to reach a plateau and isn't meeting the targets that The Institute has set for him on their rigorous and at time arduous program for recovery. I do not want to give away too much in my review as I want people to read this book for themselves. I want them to feel the joy, wonderment, despondency and heart break in the book for themselves. You go through the book and i found myself thinking What if? What if the doctors had delivered Joseph sooner? What if he had been put on a medical program for Autism sooner? What if Judy and Stephen had had more help with the program? These are among the many questions you will ask too when you read the book.I cannot recommend this book highly enough, it isn't just a must read its a book that we should read!
I do believe in some sort of "afterlife" and would like to think perhaps Song Yi was brought into Stephen's life by "fate" Judy would have wanted him to be happy. Song Yi also seems to be good for and to Joseph. Judy and Stephen went through some dark dire circumstances and events in this book and you think How on earth did they go on, you think could I have done what they did? Then you read about Joseph and you know it was their love for him and from him that kept them going and you know should you have had to you would also do everything for your children too. Within the book you read a lot about peoples ignorant reactions and attitude, how they speak to Joseph as though he is a baby still. They should be ashamed of their staring and ignorance. Where I used to work an elderly gentleman used to come in the store with his autistic grandson and I used to see certain members of staff keeping their head down not wanting to help them find the books or whatever they wanted for them. You see I don't know if the staff thought the young man would be violent or what, he used to stand near the shelves and tap-tap-tap on them.I am not bragging or self promotions myself on a pedestal here but I found myself going out of my way to help these two customers, this went on for many months, the grandson would stand near the counter I was working on going through his tapping routine and would continue to do so until I said Hi and then one day he rewarded me with a smile and the joy on his Grandads face was immeasurable, a mixture of joy and surprise that his grandson was interacting with me. All the young man needed was a bit of understanding and a little attention. My blood boiled on occasion during the book at the ignorance and interference of people who did not know or take the time to get to know Joseph and his family. Susannah sounds an absolutely caring child and the way she is with Joseph in the book is brilliant, and I feel from the book that Joseph is probably secretly proud of his sibling too. Well I will end my review here or I will go on forever and ever, basically go out and buy the book it truly is an inspirational, heart breaking yet heart warming book.
I do believe in some sort of "afterlife" and would like to think perhaps Song Yi was brought into Stephen's life by "fate" Judy would have wanted him to be happy. Song Yi also seems to be good for and to Joseph. Judy and Stephen went through some dark dire circumstances and events in this book and you think How on earth did they go on, you think could I have done what they did? Then you read about Joseph and you know it was their love for him and from him that kept them going and you know should you have had to you would also do everything for your children too. Within the book you read a lot about peoples ignorant reactions and attitude, how they speak to Joseph as though he is a baby still. They should be ashamed of their staring and ignorance. Where I used to work an elderly gentleman used to come in the store with his autistic grandson and I used to see certain members of staff keeping their head down not wanting to help them find the books or whatever they wanted for them. You see I don't know if the staff thought the young man would be violent or what, he used to stand near the shelves and tap-tap-tap on them.I am not bragging or self promotions myself on a pedestal here but I found myself going out of my way to help these two customers, this went on for many months, the grandson would stand near the counter I was working on going through his tapping routine and would continue to do so until I said Hi and then one day he rewarded me with a smile and the joy on his Grandads face was immeasurable, a mixture of joy and surprise that his grandson was interacting with me. All the young man needed was a bit of understanding and a little attention. My blood boiled on occasion during the book at the ignorance and interference of people who did not know or take the time to get to know Joseph and his family. Susannah sounds an absolutely caring child and the way she is with Joseph in the book is brilliant, and I feel from the book that Joseph is probably secretly proud of his sibling too. Well I will end my review here or I will go on forever and ever, basically go out and buy the book it truly is an inspirational, heart breaking yet heart warming book.
August 8, 2011
What do you do when the “experts” have no answers or solutions for you? If the problem is something simple, like your car making a weird noise, the answer is easy. You take it to another mechanic.
What do you do when your child isn’t developing as fast as other children and the doctors not only have no idea what is wrong with him, but also have no suggestions on how to move forward, how to help him? With courage and determination, risking everything, Stephen Gallup and his wife Judy went to astounding lengths for their son.
Often, when reading a memoir or biography, I attempt to put myself in the subject’s shoes, pondering whether or not I would take the same steps that they did. I couldn’t even fathom what Stephen, Judy, and Joseph faced, yet was in awe that they were able to continue to sacrifice and move forward everyday into the the unknown. I mean, when you have a child, you tell yourself that you just want him or her to have ten fingers and toes, but inside you want so much more for them. What do you do when everything you dream about for them isn’t possible in the eyes of modern medicine? Do you give up? How could you?
Stephen Gallup and his wife refused to give up, refused to accept that Joseph couldn’t be “normal”, and continued to have big dreams for their son against all odds. They showed a determination to move beyond that I am not sure that I could muster myself, yet what choice did they have?
They took risks, with therapies, their future, their family’s approval, really with everything to not give up on Joseph and that is the beauty of this book. Nothing was more important than getting Joseph walking, talking, going to school. They refused to give up on him.
What About the Boy? is a profile in courage that is often hard to read. I can’t even imagine what it was to live through. There are parts of it that drag a bit, just as I am sure that the events did in the Gallup’s own struggle, but in the end, there is an accepted triumph that was worth all of the sacrifices. This family fought a battle pretty much alone and they should have had to. We expect modern medicine to have just about all of the answers and they don’t. We think that if they don’t have the answers, that we should just give up and we shouldn’t.
The Gallups never gave up on Joseph and none of us should ever just blindly accept that there are no answers.
What do you do when your child isn’t developing as fast as other children and the doctors not only have no idea what is wrong with him, but also have no suggestions on how to move forward, how to help him? With courage and determination, risking everything, Stephen Gallup and his wife Judy went to astounding lengths for their son.
Often, when reading a memoir or biography, I attempt to put myself in the subject’s shoes, pondering whether or not I would take the same steps that they did. I couldn’t even fathom what Stephen, Judy, and Joseph faced, yet was in awe that they were able to continue to sacrifice and move forward everyday into the the unknown. I mean, when you have a child, you tell yourself that you just want him or her to have ten fingers and toes, but inside you want so much more for them. What do you do when everything you dream about for them isn’t possible in the eyes of modern medicine? Do you give up? How could you?
Stephen Gallup and his wife refused to give up, refused to accept that Joseph couldn’t be “normal”, and continued to have big dreams for their son against all odds. They showed a determination to move beyond that I am not sure that I could muster myself, yet what choice did they have?
They took risks, with therapies, their future, their family’s approval, really with everything to not give up on Joseph and that is the beauty of this book. Nothing was more important than getting Joseph walking, talking, going to school. They refused to give up on him.
What About the Boy? is a profile in courage that is often hard to read. I can’t even imagine what it was to live through. There are parts of it that drag a bit, just as I am sure that the events did in the Gallup’s own struggle, but in the end, there is an accepted triumph that was worth all of the sacrifices. This family fought a battle pretty much alone and they should have had to. We expect modern medicine to have just about all of the answers and they don’t. We think that if they don’t have the answers, that we should just give up and we shouldn’t.
The Gallups never gave up on Joseph and none of us should ever just blindly accept that there are no answers.
February 15, 2013
Stephen Gallup's book, "What About The Boy" is a heart-rendering testament to parental love. When Stephen and Judy Gallup's son Joseph is born with undefined disabilities and appears to be in excruciating pain 24 hours a day, they must take extraodinary measures to minimize his suffering and maximize his potential.
The poignant story of parents who will stop at nothing to give their disabled son the skills the rest of us take for granted, "What About The Boy" follows the Gallups' pursuit, both inside and outside of traditional medicine, to help their son achieve a painless life and reach is fullest potential.
Trust me, you won't put "What About The Boy" down once you pick it up.
The poignant story of parents who will stop at nothing to give their disabled son the skills the rest of us take for granted, "What About The Boy" follows the Gallups' pursuit, both inside and outside of traditional medicine, to help their son achieve a painless life and reach is fullest potential.
Trust me, you won't put "What About The Boy" down once you pick it up.
October 25, 2011
*** Visit http://blog.jill-elizabeth.com/2011/1... to enter to win a free copy, contest runs through 11/8/11! ***
What About the Boy? is a book that came to my attention through the author’s response to a request I put out for guest posts. That in itself wouldn’t ordinarily be all that unusual or special – many an author writes promotional material in an attempt to gain publicity for their book. But this book itself is special, as is its author. You see, this isn’t just another story or work of fiction – this is the author’s own story. Well, his and his son Joseph’s. And it’s a beautiful and difficult and moving and scary and lovely story all wrapped up in one three-hundred and seventy-six page package.
By the way, a complimentary review copy was generously provided by the author. And the author and his publisher are generously also providing a giveaway copy. But more details will come later…
On On March 5, 1985, Steve and his wife Judy had a son. Joseph’s birth was long and difficult – as would be the subsequent relationship between him and his parents and the medical establishment. You see, Joseph was born disabled – but no one knew exactly how, which meant no one knew exactly how to help him.
From their initial run-ins with pediatricians and hospital physicians through years of traditional and non-traditional health practitioners, Steve and Judy remained focused on one thing and one thing only – ensuring that Joseph had every opportunity to experience a full and healthy life. Their battles with doctors, nurses, insurers, and other well-meaning but often terribly misguided health care professionals are chronicled in this incredible tale of the power of hope – and the difficulties of wandering blind in the world of health and disability.
Steve and Judy’s journey is incredible. Their refusal to accept the hopelessness and negativity of the medical establishment, their willingness to follow any and every lead regardless of its improbability or cost, and their unmitigated faith in Joseph are presented in simple, straightforward, unapologetic – and utterly non-self-pitying – language. Steve’s writing is as clear as his message – this is our situation and our life, he says, and all we can do is fight and persevere and believe. And they did – and Steve continues to do so to this day.
The story is presented in a no holds-barred manner that alternates between gut-wrenching and breathtakingly optimistic, between devastating and unbelievably hopeful. It will have you railing against the unfairness of the universe and then, suddenly, with Joseph’s first steps or first words, you will find yourself smiling and saying a quick word of thanks or praise to whatever universal power you happen to believe in.
What About the Boy? is a lovely tribute to the power of a parent’s love. Steve and Judy literally gave everything to Joseph – because, as their son, he was everything to them. Their story will touch your heart – and sometimes break it – in the manner of all the best stories.
What About the Boy? is a book that came to my attention through the author’s response to a request I put out for guest posts. That in itself wouldn’t ordinarily be all that unusual or special – many an author writes promotional material in an attempt to gain publicity for their book. But this book itself is special, as is its author. You see, this isn’t just another story or work of fiction – this is the author’s own story. Well, his and his son Joseph’s. And it’s a beautiful and difficult and moving and scary and lovely story all wrapped up in one three-hundred and seventy-six page package.
By the way, a complimentary review copy was generously provided by the author. And the author and his publisher are generously also providing a giveaway copy. But more details will come later…
On On March 5, 1985, Steve and his wife Judy had a son. Joseph’s birth was long and difficult – as would be the subsequent relationship between him and his parents and the medical establishment. You see, Joseph was born disabled – but no one knew exactly how, which meant no one knew exactly how to help him.
From their initial run-ins with pediatricians and hospital physicians through years of traditional and non-traditional health practitioners, Steve and Judy remained focused on one thing and one thing only – ensuring that Joseph had every opportunity to experience a full and healthy life. Their battles with doctors, nurses, insurers, and other well-meaning but often terribly misguided health care professionals are chronicled in this incredible tale of the power of hope – and the difficulties of wandering blind in the world of health and disability.
Steve and Judy’s journey is incredible. Their refusal to accept the hopelessness and negativity of the medical establishment, their willingness to follow any and every lead regardless of its improbability or cost, and their unmitigated faith in Joseph are presented in simple, straightforward, unapologetic – and utterly non-self-pitying – language. Steve’s writing is as clear as his message – this is our situation and our life, he says, and all we can do is fight and persevere and believe. And they did – and Steve continues to do so to this day.
The story is presented in a no holds-barred manner that alternates between gut-wrenching and breathtakingly optimistic, between devastating and unbelievably hopeful. It will have you railing against the unfairness of the universe and then, suddenly, with Joseph’s first steps or first words, you will find yourself smiling and saying a quick word of thanks or praise to whatever universal power you happen to believe in.
What About the Boy? is a lovely tribute to the power of a parent’s love. Steve and Judy literally gave everything to Joseph – because, as their son, he was everything to them. Their story will touch your heart – and sometimes break it – in the manner of all the best stories.
January 11, 2012
This book exceeded my expectations but I shouldn't expect less from Stephen Gallup. I met Steve in '95 and knew he was a very eloquent writer just from our email missives. The previous reviews have already summarized the story so I won't go into more details allowing readers to enjoy the inspiring, emotional memoir themselves.
Even though I knew Steve, I did not know all the details of his & Judy's quest to heal Joseph. Steve did an excellent job of describing the treatments by keeping it simple and not boring. He did not glorify his story and gave the good, bad and ugly providing a very honest memoir.
I did not meet Steve's first wife, Judy but has met his present wife, Song Yi and the rest of his family. It is easy to see that they all love Joseph and he loves them. Steve continues to give his all to his family and is truly a devoted family man.
Thank you for sharing your amazing story!
Even though I knew Steve, I did not know all the details of his & Judy's quest to heal Joseph. Steve did an excellent job of describing the treatments by keeping it simple and not boring. He did not glorify his story and gave the good, bad and ugly providing a very honest memoir.
I did not meet Steve's first wife, Judy but has met his present wife, Song Yi and the rest of his family. It is easy to see that they all love Joseph and he loves them. Steve continues to give his all to his family and is truly a devoted family man.
Thank you for sharing your amazing story!
August 19, 2013
Interesting memoir about a father's attempts to help his son with a disability. Not sure I agree with all his choices, because the program was incredibly intense, but then I've never been in his shoes, so I wouldn't judge what he does as a parent.
April 18, 2012
This is a good book for anyone to read that has a special needs child in their life. Gallup's story of raising his special needs son is one that will pull at your heartstrings and make you mad at the medical world at the same time. 300 pages of an amazingly strong family story is then derailed by a hard left turn in his story telling where previous strategies are abandoned and two epilogues that cram a lot of information into a short amount of space.
Don't get me wrong, this is a good story and hit every emotional note that it was meant to, but I was turned off by how much was crammed in at the end in a short amount of space. I would've liked to see the book balanced out a little more to give more time to later developments in his son's life.
Don't get me wrong, this is a good story and hit every emotional note that it was meant to, but I was turned off by how much was crammed in at the end in a short amount of space. I would've liked to see the book balanced out a little more to give more time to later developments in his son's life.
May 16, 2016
I tried to like this book.I wanted to be understanding,but I could not tear myself from the professional side of this coin.Having worked with Special needs children and adults for many years I have never heard of a doctor,let alone more than one, tell parents to get counseling for themselves because there was no diagnosis or help for a client.In our population even people without a dx get help from day one...if they want it.
I was a bit taken aback at the thinking that this child could be cured.I applaud any parent for giving their child the room and help to thrive in their own way.
I was given this book for a fair and honest review.
I was a bit taken aback at the thinking that this child could be cured.I applaud any parent for giving their child the room and help to thrive in their own way.
I was given this book for a fair and honest review.
April 23, 2014
To thePerseverance
loved following this special little boy through the desperate journey with his parents. I believe he became his best self as together they followed whatever paths seemed likely to bring this child to the place where hope leads them.
lowingthis speciial
loved following this special little boy through the desperate journey with his parents. I believe he became his best self as together they followed whatever paths seemed likely to bring this child to the place where hope leads them.
lowingthis speciial
June 1, 2015
This book shows the challenges parents faced in the last few decades to get help and early intervention for a child with special needs. The author bravely shows the path they chose to do their best to help their son. An inspiring story of perseverance and love!
February 8, 2014
An amazing story of a family strugle to give their son a better life.
March 17, 2025
As the author of this 2011 book, I did not feel that a review from me would be appropriate at the time of publication. However, more than a decade has now passed, and during that time I've been away from it. Recently, I saw the file on my Kindle and decided to give it a fresh look, and to be as objective as possible. While I was doing this, my daughter happened to read it as well, and posted her own commentary (a revision of what she'd written at age 12).
Some readers have told me that they found the story unbearably sad. I understand that, reading the opening pages, when the excitement of a new birth yields to horror and dismay. For the first time I understand a comment by Joseph's doctor, when Joseph was a young adult. The doctor said it cut too close to his worst fears, as a parent of young children, and he couldn't bear to read it. (I'd hoped he might provide feedback from a professional's point of view, but if he was honest in claiming to have reacted emotionally, maybe that's good.) Personally, in this reading I found myself caught up in the family's search for an acceptable response to the problem—yes, even knowing how it all ends.
I am somewhat relieved to find that this telling of our story still feels right. Frankly, I expected to see a lot that I would want to change. Not so! Aside from an imperfect word here and there I believe it's pretty good.
There's a palpable change in tone when it transitions from the family's determined search for answers to the nuts-and-bolts of learning and implementing the Institutes' home treatment program. When writing this part, I believed it was essential to describe clearly what therapies we were implementing, and to explain the reasons. After all, the previous 20 months had been spent desperately wanting a plan of action, and now at last we had it.
At the time, I imagined this information would be of immense value to other families in our shoes. As for others, readers of early drafts simply did not understand what was going on without details. Still, the pace does slow down at that point.
If I were writing this now, I would try for shorter chapters.
If I were living through this now, especially knowing what I know today, there would most definitely be changes in terms of what we did. But everyone who looks back can say that.
By the way, one or two readers in the UK have opined that we should not even have been permitted to follow the course of action that we did. I welcome different views on that question. My impression, based on certain individual stories I know, is that people in the UK have allowed the State to assume way too much control over their lives. Judy and I didn't necessarily act wisely at every juncture, but I remain very glad that we had the freedom to use our judgment, such as it was.
A few other readers have challenged the accuracy of the way providers are depicted here. They don't believe any professional would behave in this way. Sorry, folks! This is factual. Actually, there was a lot more of that than made it into the final cut. I omitted many such interactions because they were repetitive. Also, comparing notes with other families confirmed that my family's experience was not unique.
As for the dialogue, most was transcribed right off a cassette tape recorder. It's completely accurate.
But as for what we did, when working on notes for the first draft (at a time when we were still implementing the program), I believed Glenn Doman and his Institutes for the Achievement of Human Potential had important things to say to everyone trying to cope with the developmental issues of a family member or patient. Yes, I was indoctrinated. The unfolding story leads to the inescapable realizations that (a) they did not know as much as they pretended to know, and (b) their refusal to accept the limitations of their approach was extremely damaging. A reviewer in The New York Journal of Books noted that, "At first, the book seems to be a shill for the Institutes," but that "gradually the tone changes" and "Looking back, we can see that Mr. Gallup has offered an unflinching look at the Institutes."
I am glad to have read this again, at this remove, after all that has happened since its publication. And I'm especially glad to have left this record of the greatest struggle of my life.
Some readers have told me that they found the story unbearably sad. I understand that, reading the opening pages, when the excitement of a new birth yields to horror and dismay. For the first time I understand a comment by Joseph's doctor, when Joseph was a young adult. The doctor said it cut too close to his worst fears, as a parent of young children, and he couldn't bear to read it. (I'd hoped he might provide feedback from a professional's point of view, but if he was honest in claiming to have reacted emotionally, maybe that's good.) Personally, in this reading I found myself caught up in the family's search for an acceptable response to the problem—yes, even knowing how it all ends.
I am somewhat relieved to find that this telling of our story still feels right. Frankly, I expected to see a lot that I would want to change. Not so! Aside from an imperfect word here and there I believe it's pretty good.
There's a palpable change in tone when it transitions from the family's determined search for answers to the nuts-and-bolts of learning and implementing the Institutes' home treatment program. When writing this part, I believed it was essential to describe clearly what therapies we were implementing, and to explain the reasons. After all, the previous 20 months had been spent desperately wanting a plan of action, and now at last we had it.
At the time, I imagined this information would be of immense value to other families in our shoes. As for others, readers of early drafts simply did not understand what was going on without details. Still, the pace does slow down at that point.
If I were writing this now, I would try for shorter chapters.
If I were living through this now, especially knowing what I know today, there would most definitely be changes in terms of what we did. But everyone who looks back can say that.
By the way, one or two readers in the UK have opined that we should not even have been permitted to follow the course of action that we did. I welcome different views on that question. My impression, based on certain individual stories I know, is that people in the UK have allowed the State to assume way too much control over their lives. Judy and I didn't necessarily act wisely at every juncture, but I remain very glad that we had the freedom to use our judgment, such as it was.
A few other readers have challenged the accuracy of the way providers are depicted here. They don't believe any professional would behave in this way. Sorry, folks! This is factual. Actually, there was a lot more of that than made it into the final cut. I omitted many such interactions because they were repetitive. Also, comparing notes with other families confirmed that my family's experience was not unique.
As for the dialogue, most was transcribed right off a cassette tape recorder. It's completely accurate.
But as for what we did, when working on notes for the first draft (at a time when we were still implementing the program), I believed Glenn Doman and his Institutes for the Achievement of Human Potential had important things to say to everyone trying to cope with the developmental issues of a family member or patient. Yes, I was indoctrinated. The unfolding story leads to the inescapable realizations that (a) they did not know as much as they pretended to know, and (b) their refusal to accept the limitations of their approach was extremely damaging. A reviewer in The New York Journal of Books noted that, "At first, the book seems to be a shill for the Institutes," but that "gradually the tone changes" and "Looking back, we can see that Mr. Gallup has offered an unflinching look at the Institutes."
I am glad to have read this again, at this remove, after all that has happened since its publication. And I'm especially glad to have left this record of the greatest struggle of my life.
September 1, 2019
Loved the story....too much medical detail
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