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.”

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.

Last week, a group of dads belonging to the National Foundation for Autism Research honored me with an invitation to speak at their meeting. The online announcement said I would talk about my book, but I thought it would be more constructive to discuss a few parenting principles. I went in with a short list, and might’ve run out of things to say in just a few minutes. However, the audience was a public speaker’s dream come true. Everybody was so engaged! All that constructive energy renews my hope that the prospect for our kids is improving.

Anyway, these are the high points of what I said.

A child who is disabled is, first and foremost, still a child.

This may sound like a bromide, but what I’m recommending comes most easily when you are dealing with an apple-cheeked youngster who says cute things and gives you lots of great feedback. A child with problems that make him less than cuddly or responsive may inspire enthusiasm on your part for finding professional help. And that’s great. However, he also desperately needs to be told, repeatedly, in every way, that he is loved and cherished. Kids who give you no eye contact, or who are rigid or combative, need this reassurance at least as much as anyone else. So in addition to being an advocate, be a daddy.

If your doctor doesn’t take your concerns seriously, consider finding another doctor.

As noted previously on this blog, not all doctors are on board with the importance of early intervention, even today. If you find yourself dealing with someone from the nineteenth century, dump him. The next guy you see may be just as bad, but there are good doctors out there—people who know this. We parents owe it to our kids to find them. Remember: Whatever choice is made, we are the ones who live with the consequences.

Have extravagant goals for your kids.

Swing for the fences. If you strike out, at least you know you tried. Imagining a wonderful outcome is not the same as being in denial. Denial is excluding or ignoring information we need to attend to. It’s pretending that everything is fine when things are not fine. Instead of that, I’m talking about doing everything we possibly can to turn the situation around. For me, the question has always been whether I was willing to relax and coast while knowing that there was something I might be doing that could make a difference. And I wasn’t.

Choose your battles.

Initially, I meant to talk only about not letting other people rope you into promoting philosophies and causes that don’t necessarily benefit your child. However, I spent most of my time talking about unwinnable confrontations with school districts. Everyone present had a lot to say on this topic, and this is where I learned the most. Because these days, parents who are prepared and who don’t quit seem to be winning more often! And as for those causes, participation can be energizing. Well, yes, I did know that. Perhaps some of the lessons impressed upon me over the years have been incorrect. If I give this talk again, this point is the one to work on.

Stay balanced

This one almost seems to contradict the point about swinging for the fences. I think it’s consistent if each of us applies common sense. Our families will not be helped if our own lives are ruined in the process of trying to overcome a chronic problem. We must take care of ourselves while we are taking care of our kids. And since I was speaking to a room full of dads when I said this, I referred to a guest blog post from last summer and finished by recommending hugs for wives as well as for kids.

I originally wrote this item for another website, which subsequently took it down without notice. Maybe it was too controversial. ; )

The other morning, Susie, my 11-year-old, mentioned that her teacher told the class that she’d first learned to read via the so-called whole-word approach, which of course is now very much out of favor. I told Susie that “whole word” probably describes the method I used many years ago in helping her disabled older brother learn to read.

Back in those days, I got my guidance from Glenn Doman, author of How to Teach Your Baby to Read and founder of a highly controversial clinic for treating brain-injured kids. My son Joseph did learn to recognize words via this method, although that skill never progressed to a functional level. Whether the problem lay in the method or in his capacity to learn (or my own capacity to teach) is still open to debate.

I also told Susie that, if the past is any indication, phonics may in due course drop out of favor as well, either to be replaced by something new or by a return to whole-word. I have no argument whatsoever against phonics. My point is just that there will always be warring factions, most especially when it comes to matters of education and child-rearing, and progress seems to occur along a zigzag path.

Nothing brings the divisions into focus more sharply than the experience of raising and advocating for a developmentally disabled kid. I could go on all day listing the topics people fight about here.

• Which is better, segregated special education classes or total inclusion/mainstreaming?
• What about vaccines? Are they a greater danger than the diseases they guard against? If so, is the problem only one or two vaccines, or the accepted schedule for giving them, or are they all suspect?
• What about terminology? Is it worthwhile to object when you hear a word like “retarded?” If so, what’s a better term? Challenged? Differently abled? Special-needs?
• Should kids with developmental disabilities be helped to improve, to be made more like the rest of us, or are they just fine the way they are?

The above questions barely scratch the surface, but it would surprise me if you did not feel a strong reaction to at least one of them. Even in the best of circumstances, parenting can sometimes be scary; and you can multiply the scare factor by a hundred when disability is involved. We want to believe that we have a handle on things, some semblance of control. If we don’t have that, how can we hope to give our kids the security and opportunities they deserve? And so we quite naturally look for justifications that will enable us to take positions with some confidence.

Over the long haul, however, there are trends and counter-trends in most if not all of these controversies. Just as in whether to teach reading via whole-word or phonics.

And yet, the fact that we may one day view things differently doesn’t mean we’re not entitled to opinions now. Of course we are. Because we have to make choices now. But somewhere along the line, I noticed something about myself. As the parent of a disabled boy, I had certainly formed strong opinions; and my concern for him, and my pent-up frustration with the limited opportunities available to him, had created in me a sort of righteous indignation that could burst forth when I encountered views contrary to my own.

Maybe now and then it’s healthy for us to let off steam in such cases. On the other hand, I wonder whether taking up the banner of a cause, any cause, really benefits our kids. After all, they are what this is all about. We adults are going to disagree over one thing or another, and maybe we need to accept that.

Click here to listen to a lively 30-minute interview with host Douglas Gibbs. (my portion begins at the 11:20 mark.)

“I appreciate the fact that you’re comparing this to a detective story, because that’s really what it felt like. You know, in classical detective stories you’ve got a private eye, and typically he’s butting heads with the law enforcement. They’re not on the same team. More often than not, the law enforcement people are just about ready to arrest the private eye, instead of going after the real bad guy. And that’s kind of how it felt. We were—and we didn’t want this! We did not want to be butting heads with the doctors. We wanted to be on the same team with them.”