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 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.

The extraordinarily beautiful child to the left wrestles every day with attention deficit disorder. You can click the photo to learn more about her.

I used to talk rather glibly about all such challenges, but with the passage of time I’m increasingly humbled by how very little any of us really understand. Let’s just say, for the sake of having a concept we can grasp, that developmental disabilities act like partial barriers that impede messages going in to the brain (in the case of something like ADD) and/or output from the brain (in the case of something like stuttering).

Bethany, the mother of this girl, has posted a summary of my family’s story on her blog. There are links to all my guest posts in the sidebar, but I’m giving this one a little more prominence because Bethany is actively looking for additional stories of how families have dealt with developmental issues. The beginning of a new year is an especially appropriate time to recall that it’s mentally satisfying to fight for what we know is right. This is true even if the fight isn’t going exactly as we would choose. If you have lessons to share from your own story, please contact her here.

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

We took time out from holiday preparations for one last radio interview, which you can hear by clicking this link. My portion begins at about the 15-minute mark, but why not listen to the fellow before me, too. He’s written a book as well. The following excerpt was my response when the host asked me to explain what is meant by the “pledge” to my son in the book’s subtitle:

“I spoke about an objective earlier. The objective that we worked toward, that we got so excited about, was to try our very best to help him achieve a full recovery. Now, we knew the odds were against us. But it felt like something worth shooting for. It certainly motivated us, as opposed to being, to living in despair, which is what some folks that we knew were doing. So, um, we did not achieve total wellness. But we did achieve some wonderful things for him. And I don’t want to minimize that. I think that his quality of life is substantially better as a result of it. And the pledge is that I’m still his advocate now. He’s 26 years old. And I always will be.”

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.

Today I enjoyed my 12th media interview concerning WATB. As occasionally happens, discussion took off in unexpected directions, so that I failed to make certain points that had felt important when starting out. On the other hand, these conversations have all been good experiences and have certainly kept me on my toes. Please click here for the audio. Excerpt below:

“I probably am the biggest winner in the family for the way that things have turned out. That’s one reason why I titled my book What About the Boy?, because I keep trying to bring the focus back to him. Because he doesn’t speak for himself and it’s so obvious to me as I look at the story I’ve written that we can’t avoid seeing things from our own perspective. And he doesn’t really have a way of presenting his case. And so I’m trying to do that for him in writing the book.”

While away from home for the Thanksgiving holiday, I was interviewed for the “Together Again” program on blogtalk radio. Click here for the audio file and skip ahead to the 90-minute mark to hear my segment. (Dr. David Sabine, who interviewed me on a Texas radio station in September, is on just before me.) Excerpt below:

“[My son’s] mother took it a lot harder than I did. To me, it was a matter of determination. I was gonna resolve this problem one way or the other, the best I could. I went to war with it. Didn’t go to war with my son, mind you, I went to war with his condition. But my wife, his mother, took it personally. She felt there was something wrong with her, that she had produced a damaged child. And I think intellectually she understood that it wasn’t logical to think that way. But she couldn’t help herself. And that, plus the frustration of constantly battling this had the effect of making her ill.”

 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.

The 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.”