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.

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.

One day last week I got a call from one of the ladies running Starlight, the center where Joseph spends his days. She said he’d been acting extremely hungry of late—even to the point of trying sometimes to take food away from his peers. She wanted to know if I had any thoughts on that.

I recalled that we’d seen something similar during Joseph’s last weekend home with us. We couldn’t keep that guy out of the kitchen, even after he’d already polished off a lot more food than anyone else, or maybe even everyone else combined. Now, he’s always had a healthy appetite, but this fixation was something new.

What was going on? I pondered a while and then posted a query to an email discussion group. This suggestion came back:

Is it possible he is mistaking pain for hunger? Perhaps a GI check to make sure nothing is going on?

Someone else wondered whether parasites could be involved.

After a delay, I reached Joseph’s doctor (whose latest word on WATB, by the way, was that it was too emotionally challenging for him to read past the first chapter, being the father of a little one himself). We discussed the situation and he promptly ruled out parasites. He thought it wouldn’t be a bad idea to check the blood chemistry, but I gathered that he didn’t expect it to tell us much.

Accordingly, last night I collected Joseph for a rare mid-week visit and took him in to the lab bright and early this morning for a blood draw. I will say that, in the few hours he was with us this time, he showed no unusual interest in food.

Driving him back to Starlight afterwards, I reflected on how very typical this scenario is—not only of most of our life together but also of what I can see of other families like ours. There’s the existing, chronic, low-grade worry that we always live with, and then something new comes along. Something like this could potentially be the symptom of a new complication, and for that reason we can’t just ignore it. At other times, the excitement is sparked by new information (generally in the form of something I’ve read) that merits investigation as a way of learning more about Joseph’s still-undiagnosed basic problem.

For us, every single time this has happened, it has led nowhere. In keeping with that pattern, I expect the doctor will have been right about the blood test telling us nothing. I expect Joseph’s fixation on food will likely taper off. Or if it doesn’t, it will be pegged as yet another behavioral issue.

Because I believe Joseph understands me most of the time, I talked in the car about the apparent futility of all these endeavors. I talked, as I so often do, about how desperately I need him to tell me what he’s experiencing. I told him about the footage, that recently went viral, about the autistic girl who communicates by typing. I sketched out, for maybe the one-thousandth time, the benefits he would enjoy if he had a comparable outlet.

By this time, we had parked across the street from Starlight. I realized that I’d lost Joseph’s attention. He still listened politely, or patiently, but he was looking past me at the building. He wanted to go in there and get on with his day. So we said good bye. Or, rather, I did.

The idea for this list arose when someone directed me to a page where I could vote for the year’s favorite books on the Goodreads website. It turned out that voting there was not an option, because I had no opinions about any of the entries. I’d heard of almost none of the nominated books in any category, and certainly had not read any. This may say something about the degree to which I am out of step with the kind of material that generates buzz.

 I do, however, read quite a lot, and do try to stay up to speed with what’s new and interesting. So I set out to create my own top ten list for the year (in no particular order). Most, but not all, of the titles that follow were published in 2011. In any event they’re all recent, and I did read them in 2011.

Best legal fiction
Diary of a Small Fish, by Pete Morin
From my Goodreads review: “The dialog in this story is pitch-perfect and most of the characters entirely believable. … I was entertained, moved, even educated. I expect it to do well.”

Best story of self-discovery
Becoming Patrick: A Memoir, by Patrick McMahon
From my Goodreads review: “This is a story about feeling isolated or cut off from what is needed to feel grounded in life (primarily, knowledge of who one’s parents are), and about what it takes to overcome the real and imagined obstacles to bridging the divide.”

Best collection of short stories
There Is Something Inside, It Wants to Get Out, by Madeline McDonnell
From my Goodreads review: “It isn’t often that I reach the end of a book and immediately turn back to the beginning and start over. Granted, in this case that involves no big commitment, since the book is quite slim. Still, the number of pages is deceptive. There’s a lot in here, and the telling is so lovely that I just wanted to appreciate it thoroughly.”

Best travel memoir
Over the Hill and Far Away: One Grown-up Gap Year, by Jo Carroll
From my Goodreads review: “Travel writing is not so much about the places visited as it is about the interaction between the place and the writer. That’s a given, I think, but even so there are variations in the degree of focus on place vs self. Travel also frequently involves venturing outside one’s comfort zone. Jo Carroll illustrates her level of comfort during her explorations by the extent to which she can step outside herself and into the exotic locales through which she passes.”

Best historical fiction
(To) Die a Dry Death, by Greta van der Rol
From my Goodreads review: “[The author] grapples with the question of what motivates certain characters, who’d previously seemed exemplary, to descend into depravity. She further suggests that at least some of those who retain their perspective and decency also have a dark side. I was reminded of essays on that subject by John Gardner and Ursula K. LeGuin (which it’s probably time to revisit).” (I applaud the author’s decision to modify the title of the ebook version with the infinitive verb form.)

Best mystery
Lake Charles, by Ed Lynskey
From my Goodreads review: “For someone who has lived many years in a major city, as I have, there’s a latent wish to escape to the purity of an uncomplicated rural environment. Lakes Charles is the antidote for that, in the same way Deliverance was. In fact, I’m probably safe in saying that certain parts of this are a deliberate homage to Deliverance.”

Best YA fiction
Smells Like Treasure, by Suzanne Selfors
I know about this book thanks to my daughter, who occasionally shares some of her faves with me. This one is just pure, unabashed fun. There is nothing wrong with that.

Best philosophical novel
Lying Awake, by Mark Salzman
From my Goodreads review: “This was a good one to read on the heels of The Power and the Glory, which I reread a couple weeks ago. Both novels concern hypervigilant, self-critical souls questing for God and unable to take comfort in potential signs of having made progress.”

Best imaginary biography
Mrs. Nixon: A Novelist Imagines a Life, by Ann Beattie
As an acclaimed writer over a period of 35-plus years, Ann Beattie is in no need of my humble endorsement. However, this new book is much too original and thought-provoking to omit. The wife of President Nixon is selected as a subject, I think because she always chose to avoid the public eye and to remain in the shadow of her tragically flawed husband. The author acknowledges that such a subject is resistant to being truly and definitively pinned down, like a preserved butterfly, so she approaches it tentatively from a variety of angles and in a variety of voices and styles, somewhat reminiscent of what Joyce does in the “Cyclops” episode of Ulysses. It’s primarily a meditation on how a writer can know anything with assurance.

Best actual biography
Twilight at Monticello: The Final Years of Thomas Jefferson, by Alan Pell Crawford
From my Goodreads review: “Having read this, I feel that I understand Jefferson far better than ever before. What I see is a man who didn’t especially want to be in public life but who rose to the occasion far more capably than do most career politicians. I see an affable, generally cheery fellow who trusted people perhaps more than was wise but who remained relatively serene despite severe personal disappointments. I wouldn’t call him a paragon, but my admiration for him has been enhanced, and to it has been added a kind of affection.”

(Voting for my own book is unseemly, but I’m sure you’ll understand that publication of What About the Boy? has to remain the top literary event of the year for me.)

UPDATE: Author Joseph Valentinetti has begun reposting some of my Goodreads reviews on his site. The plan is to select one every couple weeks. The first to go live is Third Graders at War. Please take a look.

 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.

I thought I’d depart from the usual subject matter to offer a glimpse into the life of an unknown writer who, against all odds, is striving to promote his book.

Here’s some of what I’ve been doing these last few days (not counting the efforts to keep my employer satisfied, my kids on the straight and narrow, and the sounds of disapproval from my spouse at no more than a low rumble).

• Preparing for a radio interview Tuesday morning
• Making a pitch to another radio outlet for an appearance on that show
• Offering a copy of my book to a new reviewer
• Contacting an autism researcher to comment on a presentation he’s making at a conference
• Exchanging emails with another autism researcher and sending him a copy of my book, just as an expression of gratitude for the important work he’s doing
• Critiquing a writer friend’s draft short story

This evening I look forward to returning to the book I’m currently reading for pleasure, John Scalzi’s Agent to the Stars. I read something else by Scalzi several years ago. My impression was that the idea behind that book was clever but the writing was uninspired. Based on that, I didn’t expect too much from this one, but still wanted to see what he would do with the subject: Friendly aliens have hired a publicist to help them make a good impression when they introduce themselves to Earthlings. Before proceeding, they need some help overcoming a negative: Briefly, they smell bad.

I identified with the aliens’ problem, since I am trying to present What About the Boy? in the best possible light. No, you will not find me saying that it stinks! Quite to the contrary, it’s the best and most important thing I have ever written. But who am I? The world doesn’t know, doesn’t particularly care, and that’s a major hurdle for anybody who has something to say.

Anyway, the first several pages of Scalzi’s book have been a very pleasant surprise. I read a lot but seldom get my hands on something that’s funny. I’m very appreciative when I do, because laughter is healthy—even when it causes me to wake up a sleeping spouse, who then expresses the disapproval alluded to above.

If you like to read—and I hope you do, because this site is as much about a literary effort as it is about the campaign to address a kid’s disability—then I’d be interested in knowing what kind of books you turn to for relaxation.