What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

 
 

November 13 interview with host Lillian Brummet

The interviewer’s focus in this discussion remained pretty close to the “lost, isolated and helpless” theme in her write-up. Listening through it afterwards, I wondered if perhaps she wanted more acknowledgment from me that such is the fate of people trying to raise disabled kids.

Readers of What About the Boy know that I don’t minimize the reality and effect of strong emotions. However, my view is that the value of anything said about this depends in large measure on finding a way not to feel lost, isolated, and helpless, and instead to feel empowered to bring about positive change – or at least to remain undefeated in spirit. It seems the answers I offered to her questions restated that point in various ways.

As I’ve written in other posts, everyone seems to encounter hardship, disappointment, injustice, etc. Some folks do have easier lives than others, but there’s no point or future in anyone arguing that they’ve been given a worse deal than someone else. When you take that path, you’re in danger of nurturing that sense of unfairness. I don’t think it’s constructive to direct your energies away from the neverending process of living victoriously.

Please click the above image to hear the audio. Click here to read the transcript. As always, comments are welcome.

Thoughts prompted by a pioneer on getting from here to there

Joyce quote

Henry Ford, the entrepreneur who showed a younger world how to get things done in a big way, has been credited with this gem of wisdom: “If you think you can do a thing or think you can’t do a thing, you’re right.”

I was reminded of that today when writing a short remembrance of another pioneer, Ray Bradbury. The story in WATB, and my ongoing ruminations about what it means, amount to an exploration of the limits of what we can do.

Here are more nuggets from Mr. Ford, and my current thoughts on their application:

“Time and money spent in helping men to do more for themselves is far better than mere giving.”

To me, this is a variation on what Glenn Doman said back in 1986: that the right objective for Joseph was that he be “an answer to the world’s problems, rather than another of its problems.” I understand that some disability and diversity advocates see things a little differently. My short answer to them is that it boils down to having options. Someone who has the choice of affecting the world around him is better off than someone who depends on that world for everything that happens. Assuming he makes wise choices, other people are better off as well.

self-sufficiency

“I cannot discover that anyone knows enough to say definitely what is and what is not possible.”

When Joseph was one year old, his doctors transitioned from telling us to be patient and hope for the best into telling us to get counseling, so that we could cope with the fact that nothing could be done for him. At least, they proposed doing nothing for him, and they warned us to stay away from any alternative providers who might have a different take on the situation.

Those doctors lost all credibility in our eyes when alternative providers did in fact help him.

Did the alternatives have all the answers we needed? No. Were they as smart as they seemed to think they were? Alas, they were not. This was doubly disturbing, since they claimed as adamantly as had the original doctors that no answers existed outside their own specific realm. Again, we were advised not to look elsewhere.

If we had been less motivated and more convinced that we were getting the complete picture, we might have reacted differently. But when you have a problem that you feel absolutely must be solved, and the known resources for solving it no longer inspire confidence, something happens in your head. At least, something happened in our family. We set out on a quest for answers with no guidance beyond what felt right.

Were we smart enough to do that? Probably not. But we didn’t want to give up without establishing for ourselves the potential of every plausible course of action. I cannot regret our choices.

possible

“There is joy in work. There is no happiness except in the realization that we have accomplished something.”

When I’m asked to talk about WATB, a point I always try to make is that, despite having a child with profound developmental problems, and despite being busier than we’d ever been in our lives, Judy and I spent a great deal of the time feeling extremely happy. Optimism reigned in our household. Volunteers who came to see us felt energized, and no doubt that was the reason many of them kept coming. We believed fervently in the rightness of what we were doing. We saw evidence in our son that reinforced that belief. Those days were an extraordinarily upbeat time in our family’s life, and I look back on them with wonder.

accomplishment

“Thinking is the hardest work there is, which is probably the reason why so few engage in it.”

It isn’t easy to think clearly when in the thick of battle. Also, one’s thinking is only as good as one’s knowledge, and throughout the story I tell knowledge was never in great supply. We started off with basic instincts and notions of right and wrong, and that arsenal was what informed a lot of the decisions made along the way.

But the writer writes to teach himself, and a lot of my deeper thinking on the subject of our campaign took place as I was putting my book together. So far, this thinking hasn’t particularly benefitted Joseph. It has, however, enabled me to bring new understanding to his extraordinary childhood and current status. Further revelations continue to take shape as I blog about the story. This is not a linear process. Time passes with no new insights. But then something clicks and my understanding acquires new depth.

This latter phase was optional. The story could have ended without my ever having digested or told it. I have benefitted personally from going back over it. My hope is that readers following the thinking that it dramatizes will see things anew in their own lives as well.

“Failure is only the opportunity to begin again, this time more intelligently.”

From a practical standpoint, the first motorized quadicycle Henry Ford built wasn’t much of a vehicle. The first car company he put together didn’t exactly work out for him, either. The same can be said for the first several attempts Judy and I made to help Joseph. We took our son to doctors and therapists who, quite frankly, had other priorities that prevented them from giving his case the kind of attention it needed. We saw other providers whose frame of reference was too narrow, if not altogether wrong.

Every time a resource disappointed us, we looked for another. We looked to ourselves, as well, because early on it became obvious that nothing was going to happen that did not involve major effort on our part.

Several milestones and several plateaus later, to use automotive metaphors, we ran out of gas. We reached the end of the road. If further progress for Joseph is yet possible, the route it will take has not yet been surveyed.

However, my pledge to my son, alluded to in the book’s subtitle, is that I remain poised to resume the effort when a new course of action looks promising. I will do so armed with everything learned along the way. The result might yet be an answer to the world’s problems.

Win a free ebook

Complete this puzzle correctly (per my answers) and send it as an email attachment to kidsbright at gmail dot com to get an ebook of What About the Boy? in either Kindle or Nook format, or as a .pdf file (your choice). A degree in English is not necessary, although having read a bunch of books would surely help.

(I admit that a tighter format, like they have in newspapers, would have been more attractive and perhaps less ambiguous. Also wish it were easier to generate something you could complete and submit online. However, I’m new at puzzle making, and this is the best I could do in the time available.)

Just click the image below to open and then send to your printer.

 Complete this puzzle to receive an ebook of What About the Boy?
Across Down
2. Bestseller about circus life 1. Sci-fi writer knighted by the Queen
5. Setting for some Burroughs tales 3. Utopian novel with anagram title
6. Whitman said, “I celebrate ______” 4. King with a daughter problem
10. Nadsat slang for “good” 7. Still waiting for this guy
11. Sports writer, lost a daughter to CF 8. Pondered a road not taken
16. ____ Kampf 9. Translated by a committee
17. He wrote Westerns 12. Writes legal thrillers
19. Not as desirable a name as Ernest 13. “Ode on a Grecian ___”
20. The ___ Sleep 14. Bad guy in Othello
22. Requested for Algernon 15. Many poems have this
25. A modern confessional genre 18. “A single man in possession of a good fortune must be in want of a ____”
26. “The past is not dead. It is not even ____.” 21. “All happy families are _____”
27. Dog who traveled around the U.S. with his master 22. Iconic horror story penned by the wife of a poet
29. Lysistrata led the women on ______ 23. Wells’ meek folk of the future
30. He set his novel in Macondo 24. Hemingway’s old man
31. Worn by a troublesome cat 28. The cruelest month
33. ”It was the age of wisdom, it was the age of ______” 29. What Atlas might do
35. A story needs this 32. “Stately, ___ Buck Mulligan”
36. Had a dragon tattoo 34. Wolfe’s astronauts had the right _____
38. Dwelt by a pond 37. Whale hunter
41. A lonely hunter 39. Premier authority of English language 
43. Went down the river with Huck 40. Nevermore will he write
44. Was read (for a time) in Tehran 42. Rabbit did this
45. Wrote a haiku in the metro  

April 24 interview with Bill Xam


This interview didn’t follow any particular format, but Mr. Xam managed to touch on all the bases in a way that made it easy for me to give, I hope, helpful answers. I cannot resist highlighting the comment he makes at the end, after I’ve signed off: “The book is in my opinion more than worthy of reading. I believe that this book will shift the paradigm of how you think, as it did for me. For me, it was a very spiritual experience. I read the book, and you should, too.”

What might have been

Parents of kids with developmental issues tend to hate events like birthdays. We hate intrusive reminders that time is passing and that an ever-widening gulf separates our child from his peers.

This disturbed Judy, when Joseph was little. Personally, I felt it more keenly when he entered his teenage years (probably because, prior to that time, I’d expected to see him overcome everything). (WATB shows how I held onto that optimism.)

But later, every time I noticed that my son was really not a bad-looking guy, I thought of the girls who would’ve been calling him. If he could talk to them, that is. I also thought of the buddies who might have been coming round to share fascinations with bands or computer games or cars or other hot topics du jour. I thought of the school projects that might have prompted him to seek my help, during which we might have enjoyed a little extra bonding before he ventured out into the broader world.

By now, he’d most likely be finished with school and launched into a career of one sort or another. He might be married–might even have a kid, although historically the generations come pretty far apart in this family. I was in my mid-thirties at Joe’s birth, and in my fifties when his siblings joined us. I don’t know why, but previous generations followed a similar pattern.

Come to think of it, the repetition is almost uncanny. I have three kids. My father had three kids. His father had three kids. There is some repetition of names, but that part is intentional. On the other hand, how do we account for the fact that the first child born to my grandparents also had a blighted life? From what little I know, Anna was sickly and died–I think of pneumonia–when she was still very small. Go back another generation and the oldest son drowned in a river while swimming with friends. That was way, way before my time, but a brittle newspaper clipping says the parents were “well-nigh crazed with grief.” Prior to that, I think there was a boy who died when a load of hay bales tumbled off a wagon onto him, but that far back the details have been lost.

Except in my own generation, something prevents the oldest of each set of kids in our family line from meeting the normal hopes and expectations a new birth inspires.

In bygone times, someone might have called that a curse. Because no explanation is available, I have to see it as chance. Although “chance,” as an explanation for bad outcomes, doesn’t satisfy me.

The story in WATB–and here I’m thinking especially of the chain of events that resulted in the births of our two younger kids–is the story of one “if” piled on top of another. If even one apparently random event had not occurred, life would have taken an altogether different direction for us. So one might also wonder, even at this late date, how events might have unfolded without the above tragedies–if my aunt, Anna, had survived childhood, and Vance before her, and the other boy before him. And if Joseph were more actively involved in the world right now.

Who else might be benefitting?

An edited version of this article appeared in The San Diego Reader.

When doctors get it wrong

In part, WATB concerns the experience of begging our son’s doctors for help with a major problem, discovering that those experts had no idea of how to treat the problem or even much curiosity about it, and then looking elsewhere for answers.

The book includes a scene in which a newspaper reporter is interviewing me about the unconventional treatment my wife and I selected. He has already checked with a local pediatric neurologist, who informed him that we are wasting our time. Therefore, his line of questioning is confrontational. Why do we insist on ignoring professional advice? I point out that the professional advice had been to do nothing and accept our son’s undiagnosed condition as a fact of life, whereas the alternative approach we have taken is already bringing about wonderful improvements in his abilities. This claim means nothing to the journalist. Who am I, a nonprofessional, to say that my son is better or that it is due to this crackpot intervention?

Afterwards, Judy and I felt foolish for having let the guy draw us into an argument. We didn’t need to defend our choice. We only needed help for our son. At that point, anyone claiming superiority to the resource we were using would have to show us something better than mere credentials.

Still, over time we had more discussions like that, with nurses, relatives, even casual acquaintances. Their challenges had the effect of backing us into a corner. Nobody was going to make us give up this program! Even when the passage of time did not offer much assurance that the program would accomplish everything we’d hoped for.

When we did reluctantly give it up, we continued to believe another unconventional solution would pick up where the first had left off. We would discover what to do via the same determination and common sense that had gotten us to that point. We did occasionally check in with mainstream doctors, but our alienation from them was almost complete.

A better outcome should have been possible. The following thoughts are addressed primarily to professionals. I hope there is someone out there in a position to learn from our story and from this list of conclusions:

Healthcare is a partnership.
Much is written about the necessity for patients to communicate with their doctors, but in my family’s experience, it was the docs who went silent. In doing so, they didn’t advance the partnership. Instead, they removed themselves from it.

Where WERE you guys? Maybe our expectations were not entirely realistic, but we were correct in looking for more support and guidance than you offered.

I think you had other priorities. Maybe you couldn’t spend the time necessary to understand our son because you needed to clear out that waiting room. Yes, you ordered some tests; the results were either negative or inconclusive. Did the absence of a diagnosis and treatment protocol excuse you from thinking about the case more creatively? Sometimes you claimed to be hopeful that things might spontaneously improve. Maybe each of you really hoped we would continue taking our problem to somebody else. All the explanations I can think of amount to lame excuses.

It’s not about your career or professional reputation.
We all have a tendency to take ourselves too seriously. I think what we do is more important than who we are. Doctors, if helping your patients is not the first priority, I would appreciate a little enlightenment on what ranks higher.

When we were looking desperately for a way to help our son, one pediatrician mentioned cryptically that “there are programs out there for children like yours, but I’m not going to say anything about them.” Presumably, she feared censure for pointing us toward an intervention that was not endorsed by her peers. Somewhat later, when he first heard our description of what we were doing for our son, the family GP said he knew nothing about it but concluded, “If it’s working, go for it!” Later, notified that our program was frowned upon by the American Academy of Pediatrics, he changed his tune. But he never gave it any serious thought, never saw the need to learn enough to take a real stand, even though our son was his patient.

Don’t overestimate your own level of smarts.
One of the first potential treatments we learned about on our own was a medication called Piracetam, which reputedly enhanced the supply of oxygen to neural cells and possibly supported language acquisition. It was not available from pharmacies here in San Diego but could be bought over the counter in Mexico, which wasn’t far away. We mentioned it to our son’s neurologist, thinking he’d be up to speed on the subject. “Never heard of the stuff,” he said proudly. End of subject. Clearly, anything he’d not heard of was not worth hearing about. This despite the fact that Piracetam had been the subject of a recent study at the local children’s hospital. We’d already read the study. My wife had phoned one of the researchers involved.

The doctor’s confidence that he knew everything worth knowing would have impressed us more if he was offering a reasonable alternative. So do you think we visited a Mexican farmacía and began medicating Joseph ourselves? You’d better.

Bad-mouthing your competition is unbecoming.
I’ve found this habit particularly noticeable among altie providers, those selling off-label hyperbaric oxygen, auditory therapy, fetal cell therapy, etc. When we browsed among them, we repeatedly found practitioners haunted by jealousy of competing clinics. They spoke resentfully of people who had stolen their ideas or who made claims that only they themselves had the right to make. They gave the impression of not having the resolution of our son’s problems as a high priority.

 
All these errors on the part of healthcare professionals have the effect of making patients feel very much alone. In a sense, feeling alone is getting a glimpse into reality. Help from one human to another can go only so far. But I think patients have the right to expect a good college try at providing that help first.

Now as the patient, or rather the father of the patient, I too screwed up. Deprived of the benefit of your expertise, I had to rely only on my own reasoning and my own sense of what felt right. But my mistakes were the result of ignorance. Yours amount to abdication.

Feb 29 interview with Susan Sohn

This Canadian program was very lively and, I think, constructive. Such perky hosts! Please click the image to the left to hear the audio. (I come on at about 24:50.) Excerpt below:

“Ultimately, [What About the Boy?] is an honest depiction of what can happen when you refuse to accept a narrow range of unpleasant options and instead gamble everything on your determination to prove ‘em all wrong. You see, the idea that motivated Judy and me was that we were going to beat this thing. Our boy was going to be OK. When we set out to do that, we enjoyed some very upbeat, optimistic times, and we achieved exciting things with our son. Seeing him walk for the first time, when he was 39 months old, was one of the high points of my life. But in the end we also paid a price, and the book shows that side of the coin, as well. Whether we made bad choices, whether the professionals should have provided better guidance—these are questions readers can decide for themselves. But in short this is about what happens, and ways of responding, when you have a challenge that is resistant to your best efforts to overcome it.”

“I have not read a book with so much heart”

The above kind thought was expressed by Louise Gillespie, just prior to hosting an interview with me on Women’s View Radio, January 10. I thought this was a particularly good interview (and not only because she had so many nice things to say about WATB). Often, hosts don’t have an opportunity to read the book in advance. Sometimes, they don’t even know much about the topic. Those were not problems this time! Also, numerous questions from listeners around the country added depth to the conversation. I’m trying something different in this post. Click the image to the left to hear the audio, or if like me you’re a visual person, click here to open a transcript of what was said.

Remembering It’s a Marathon and Not a Sprint

Joseph's first steps

 Two words for you today: Fear not. I type them in hopes that they won’t make me sound too much like the heavenly messengers who show up in Scripture. Perhaps it will help to mention that I’m also, or mainly, addressing these words to myself. I think they need to be said because of the moods I occasionally fall into while striving to attain objectives.

All too often, the hoped-for results of that striving are slow in showing up.

How do you react when you have to wait?

There are times when something in me wants to go ahead and expect the worst. Putting aside gloomy thoughts is a lesson I must continue learning, over and over again, because what tends to happen then is that, just as I begin to sound like Eeyore, an unexpected event reminds me that the final results are not yet in.

This was often true during the campaign to help my son Joseph, described in WATB. Joseph would hit a plateau and stay there until I was wild with impatience. Then, for example, long past the point when it would have occurred if I were running the show, there’d be the sweet reward of something like his first steps (at 39 months). The same pattern is also taking shape with WATB itself.

Yesterday, as I stewed over the perception that WATB has been read by only a small number of people, and might never be read by many more, such an event occurred. I received an email from novelist Ann Beattie. She has read my book, and she offered the verdict that it’s “excellent,” “vivid,” and “highly visual.” I’m sure she would not have contacted me to say that if she didn’t believe it to be true.

Of course, there’s no hard link between reassurances of literary quality and commercial success. Seems like the two ought to go hand-in-hand, but plenty of books have one without the other. Still, this is encouraging because from my point of view the former is the part that seems attainable via personal effort. The other comes (if it does) through a somewhat mysterious process that may be unfolding (at its own pace) even now.

Two more words, for you and for me: Be patient. Let’s try to avoid becoming discouraged. Let’s avoid letting despondency be a competitor for our heart. That’s an extra challenge on top of whatever we are doing to achieve our goals, but I think succeeding at it makes the rest of the process more fun.

Emotions like depression and anxiety boil down to our wanting to stay in control. Ultimately, we aren’t. If we were, everything would be to our liking, and that’s almost never the case. At least not for me.

There are times when we choose to go after something important. Many years ago, Judy and I set out to achieve quality-of-life improvements for our disabled son. More recently, I decided to preserve that experience in a memoir. Such choices must have integrity, by which I mean they should be motivated by the right intentions, guided by the best possible information, given shape by the highest quality of effort. So resolving to be patient is not abdicating responsibility to do what we can to obtain that good result. It’s just recognizing the point at which our powers end—or at which we must wait hopefully for the outcome of what we have sown.

Two more words: When we have done all we can, let go. The end result may surprise us.

October 25 Interview on WGSO Radio

WGSO RadioThe audio for my interview with New Orleans radio host Jeff Crouere is no longer online. However, the transcript is available in .pdf format here (excerpt below).

“It so happens that Barnes and Noble displays this book in their ‘Family and Childcare’ section. I’m not sure that’s the best category, because it’s not meant to be instructional. I call the book a memoir. Ultimately, it’s a story. It dramatizes my family’s efforts to help our child. It shows consequences of an unconstructive doctor-patient interface. And it’s about the broader experience of pursuing a goal when you don’t have reliable guideposts. Now, families who are grappling with developmental disability, or chronic health issues of any sort, can certainly draw lessons from my story. But so far, most readers that I am aware of do not even have a personal connection with disability. They’re describing this as “an emotional mystery novel,” and they say that it reminds them to go hug their kids. They see it as a—well, as a reminder to appreciate the small things in life that we sometimes take for granted.”