The host of this show, which is nominally for an older audience, asked for thoughts that might be useful to grandparents of a disabled child. My basic response to that was:

“Emotional support is golden. Anything you can do that’s constructive is probably going to be welcomed. For grandparents, my advice would be: Please do not suggest that you think this is anybody’s fault. For example, if your son is the father of the child who has problems, please don’t hint that, well you know, the mother’s family is kind of strange, so probably it’s something from that side, or vice-versa. That kind of thing is not going to help anybody. The idea is to help both of them cope, and then to offer whatever additional assistance you think you can.”

Unfortunately, the audio file is too large to post here. However, you can Click here to read the transcript.

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.”

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.

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.

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.”

Sweet are the uses of adversity,
Which like the toad, ugly and venomous,
Wears yet a precious jewel in his head.

— As You Like It, Act II. Scene I

My dad was fond of tossing off quotations from the classics, and this one was probably his favorite. Or maybe I heard it a lot because I spent too much time telling him about my problems. My response to this philosophy was probably a bored shrug.

In those days I knew a little about adversity, knew we all encounter difficult patches (or worse) in life, knew not to indulge in self-pity when events failed to follow my script. But I didn’t see the point of looking for silver linings. Resolution was the thing that interested me.

That’s why, when I became the father of a baby who had major problems, it never once occurred to me to look on the bright side. My kid depended on me! Quite obviously, he needed something that wasn’t being provided. The doctors weren’t losing any sleep trying to understand the situation. The only remaining line of defense was his mother and me. So we devoted the next several years to the challenge of setting things right.

That response still makes sense to me. All of us take steps to deal with our problems. If we have a toothache, we go to the dentist. If we’re lonely, we seek out friends. If we don’t have enough money, we save or try to get more.

So far, so good, but not all problems have such obvious remedies. What do we do when Plan A fails? Do we just try harder? Do we attack from some new direction?

Sometimes the thing never goes away.

Ultimately, that is why I thought What About the Boy? needed to be written. Not just because one kid in six has a developmental problem of one sort or another, but because people untouched by disability have other difficulties that they may argue are even worse. While some lives are easier than others, no one has much reason to feel complacent. I don’t mean for this to bring you down, but if trouble isn’t besetting you right now, it’s coming. It’s on the exit ramp from the freeway. Don’t be surprised when it shows up.

So when someone suggests that my book might be for only a very narrow, niche market, I feel stumped. “Wait!” I want to yell. “I forgot to tell you about the vampires!”

Of course, reading fantasy (or humor, adventure, etc.) can be a nice diversion that empowers us to come back and cope with our issues a little longer. I have no argument with that. It’s just that I wanted to do more than cope. I wanted to win.

My son Joseph achieved significant improvements. His quality of life today is measurably better because of the interventions his mother and I pursued.

But we wanted more. We believed–I still believe–that it was reasonable, right, and just to want more, to claim more, to expect more. We believed a full recovery was his birthright.

When we could not bring that about via human resources, we listened to people who showed us Scripture promising that God answers prayers. We didn’t want to hear other interpretations, those extolling the virtues of patience, fortitude, even brokenness.

This problem broke us. Judy died. My own life then took an unexpected course and–as a direct result of Joseph’s disability–has been transformed in remarkable ways. And yet I still fail to see how this is in Joseph’s interests.

I hope the story in WATB illustrates the importance of taking a stand when doing so seems right. I expect readers will see that, over time, devotion to a good cause may not always inspire the use of good sense. But I feel that something more is yet to be learned here. Maybe I’m still too close to it.

Although I’d much prefer not to single out anyone’s writing in this way, the following bit of promotional copy for a self-published novel illustrates a problem that’s doing a lot of damage. I found this on a nicely printed postcard next to a display copy of the book in question, and the first paragraph grabbed my attention. Apparently, the book it describes is a somewhat cerebral thriller tied in with recent history. Reading it, I felt a tug of interest. This book might be good!

Then came the second paragraph on the card, which begins:

Struggling with his own disillusionments and staying out of danger, _____’s search for the original treaty is complicated by his intense attraction to a Spanish dancer while at the same time being pulled closer to the woman who’s been in his life…

I reacted to that sentence as if it were badly played music. It destroyed the interest that the first paragraph had created.

Surely I’m not the only one who’ll respond this way. There’s a time for overlooking flaws in execution. (A children’s music recital comes to mind.) But someone offering work for sale to the public is held to a higher standard. And a writer’s ad copy for it is supposed to represent his very best efforts. Given the enormous number of competing books available to read, it must shine. If it doesn’t, readers have little incentive to venture further. I felt disappointed. I’d been in the mood to discover something new and exciting.

In view of the preference that that the mainstream publishing industry has for the tried-and-true (e.g., clones of the last bestseller, writers who already have an established fan base), we can’t count on it for anything new and exciting. More so than in the past, indie authors have an important role to fill.

Actually, just a few moments earlier that evening, I’d been discussing this very problem. My friend Lynda (author of Writing for the Web) and I were discussing books with a new acquaintance at a reception. I mentioned that many indie writers have wonderful imaginations, original stories, engaging points of view—and I admire that, since I don’t view my own writing as being particularly creative—but they blow it all by failing to pay attention to basic questions of grammar and delivery. I know I’m not alone here. In the blog post cited below, Mary Kay Shanley observes that “most self-published books would be wonderful first drafts.” No doubt, that’s why the San Diego County Library does not accept self-published books for its collection, even as gifts.

In other words, there’s a tendency to generalize and make assumptions, even without reading a book’s promotional copy or opening pages. Poor quality is not confined to self-published works. However, that’s where the world is learning to expect it.

The lady with whom I shared my feelings about this agreed politely, and then pinned my ears back by saying, “Too bad they can’t all be like us.”

I don’t mean to hold up my own writing as some kind of standard. If you want deathless prose (the stuff Alexander Pope described as being “what oft was thought but ne’er so well expressed”), look elsewhere. The point is just that the simple communication of ideas, feelings, moods, and experiences is at risk when, to use the above example, a writer doesn’t seem to know what the subject of her sentence is.

Having an audience with whom to communicate is then also at risk.

And since WATB was the book the above library declined for this reason, I can’t avoid taking this personally.

Mary Kay Shanley is an author and long-time instructor at the University of Iowa’s Summer Writing Festival, where she specializes in memoir. She posted a brief commentary on What About the Boy? at her blog, from which the following is extracted:

“I was intrigued by the controversial practice of infant/child patterning, amazed by the medical barriers that blocked little Joseph’s success, inspired by his parents’ determination to move their disabled son to normalcy, and gifted by the author’s ability to accept that ‘normalcy’ has more than one definition. Read the book. You’ll be richer for the experience.”

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.

To finish out the year, here are a few posts that have come in via the Contact page. There were others that asked challenging questions, and maybe those will serve as jumping-off points for future blog posts.

From the bottom of my heart, thank you for this book.

i share your sense, for no reason as good as what experience has led you to believe, that we have to find our own path and i much admire you for sticking to it when it worked, and for realizing when it didn’t.

Your story was very inspirational and I am glad I read it. I feel an emotional healing journey is something I would like to do as the result is so worth the effort!! You sound like you are in a good place and this is something we all long for. Your book has motivated me to start writing again and for this I want to say thank you.

I just finished your book. It’s truly amazing. It’s written with such heart felt sincerity. I got totally wrapped up in reading it. I couldn’t stop and finished it in 2 days. It reads almost like a very emotional mystery novel. It was impossible to stop going from one chapter to the next. I just can’t imagine how many families this will help.

I heard your show with Doug Gibbs yesterday. Your story touched me and I ask God to heal you son and you can use your experience to help others.
   2nd Thessalonians 3:5