A: In a nutshell, this is a story about people who become dissenters, albeit in the cause of achieving normal life, for themselves and for their kid. The characters in the story are protesting a medical protocol that offers nothing to a child who at the outset of the story is very obviously in distress. It’s understood that the child does not easily fit into a condition that the doctors have been trained to handle, but I as the child’s father was reluctant to accept their claim that nothing could be done for him. When my wife and I found alternative providers who said they knew what to do, we believed them, and we followed their advice. And our kid improved dramatically!

On the other hand, it’s also fair to say that the alternative providers overpromised, or at least that our degree of success with them was not as great as we’d hoped. The disappointments and costs (emotional and otherwise) accelerated as we began moving from one alternative to another. So, what the story says in the end is that the conventional providers let patients down twice, first by not even trying to help, and again by alienating patients to the point where they put themselves at risk of greater harm.

A: Who is the ideal reader of any memoir? Over the past couple of decades, the reading public has come to accept memoir as a distinct genre, something different from autobiography in that it scrutinizes and seeks to extract lessons from a specific piece of someone’s life. I don’t think a reader necessarily has to find a similarity between his or her own struggles and those in the story. After all, we commonly find reasons to read about topics that have no direct bearing on our personal lives. And I think a great many people can identify with the pursuit of a cherished goal in the absence of reliable guideposts.

Having said that, however, probably folks who are connected in some way with children and issues of childhood development are one group that should have a particular interest. When I first thought of making this story available to the public, I imagined that it would be primarily for other parents with developmentally disabled children, and heaven knows there is no shortage of them. My thought was to show them what worked for us, and hopefully save them some time and trouble. However, I regret to say that our story does not present one magic bullet that’s necessarily going to help anyone else. As it turns out, that’s a problem with a number of other memoirs written by parents of disabled kids: The author finds something that benefitted a child and then extrapolates to assume that all other children will likewise benefit. What happens then, if the story gets sufficient publicity, is the creation of a new cottage industry of entrepreneurs who set out to satisfy the demands of all the eager parents who’ve read that book and want the same thing for their kids. The story I’ve written will not inspire that kind of reaction. On the other hand, it should empower parents to avoid some of the common pitfalls, such as (a) wasting precious months while a pediatrician just waits to see how things are going to turn out, or (b) leaping to implement some trendy therapy before you understand what it is you’re treating.

More than parents, the readers I most want to reach are professionals, and medical professionals in particular. Almost all of the doctors and other providers we encountered in the search for ways to help Joseph clearly had no idea of what was at stake. I’m sure that if they were to read this book with open minds, they would become better at what they do. And the patients who see them would benefit.

A: I know what families with developmentally disabled kids want to hear. They want to be told specific things they can do that will help their children improve.

It’s true that the book I’ve written goes into some detail in showing what our family did. But it does so to capture the experience, not to prescribe that approach for someone else. I won’t say that another family should necessarily do the same thing.

First of all, and most importantly, I don’t claim to have any credentials for giving medical advice.

And secondly, I am convinced, from everything I’ve seen over a great many years, that these kids have very specific individual needs. It’s frustrating. There have been books that have come out with fascinating success stories in which, for example, children with autism have recovered after undergoing something called auditory therapy, or after intensive one-on-one work in a special kind of behavior modification therapy. There are parents who swear that the answer is dietary changes—eliminating wheat and dairy products. And the list goes on: hyperbaric oxygen is another one. And every time something like this gets attention in the media, there follows a kind of stampede in which everybody quite understandably wants to get the same benefit for their kids. And when, as it turns out, some kids improve under the new therapy and others do not, questions arise as to whether the therapy was not done long enough, or was not done properly. The advocates of that therapy tend to resist admitting that maybe it’s not a cure-all for everybody.

So my advice to families looking for answers for their children is this: You have to understand that all too often we’re shooting in the dark. It’s often very hard to know exactly what is going on with any given disabled kid. It’s very hard to find a professional with the patience and motivation to give the question much thought. If you do have a doctor who is determined to find a way of helping your child, count your blessings! If you have to do the doctor’s work, as well as being your child’s parent, well, it’s a matter of getting as much information as you can and evaluating that information soberly before acting, and if you do find something to believe in, being ready to stand up to anybody who puts roadblocks in your way.

It's easier to say what one should not do, and for that, please consider the article I posted here.

And finally, I heard someone say this recently and want to pass it on: If your compassion does not include yourself, its effectiveness will be limited. That is probably the ultimate lesson of the story I tell. Take care of yourself while you are taking care of your child.

A: Regardless of the kind of book being written, I believe it’s vitally important to strive for the best possible quality in your writing. I’m not talking about beautiful prose or clever turns of phrase. That sort of thing has its place, but I did not shoot for that in writing this book. What I mean is just thinking things through in order to convey ideas – choosing your words carefully to support the point you’re making and hopefully to address or head off the most likely questions that readers might have in reading it.

Now, in terms of memoir, the same thing goes. The writer has to get out of his or her own head enough to see how the story applies to other people. And it’s also important (depending perhaps on the kind of memoir being written) to compare the writer’s current perspective with that of the character acting in the narrative. In writing, I tried to account for the thinking I was doing at the time all this was taking place as well as ways in which I’ve since changed. In short, for me, there’s an introspective part of the writing that informs the action that takes place.

A: Yes, certainly. My family has always been rather private, retiring, quiet. Joseph’s home therapy program brought us out of our shell because we needed the help of volunteers, and for a period of time we had large numbers of people coming through our house. And because what we were doing was expensive, some volunteers got the idea of bringing in the media, in hopes of attracting some funding. So we found ourselves on TV a number of times, and in the newspaper.

But in writing the book, it’s true that I’m exposing more intimate details of our lives. I don’t do that lightly. I don’t do that because I want us to be in the spotlight. I definitely don’t do it to sing the blues about how tough things have been for us. Rather, my thinking has been that this is a portrait of how a family – my family – kept going under the circumstances that we had. I know, from what I’ve seen, that our experience is not radically different from that of a surprising number of other families.

A: I have been very sparing with creative license. Some doctors, for example, are not presented in especially flattering terms, although the depiction is completely accurate. But whenever possible I changed their names, because this is not intended as an attack on any individuals. I believe they acted essentially the same as the vast majority of their colleagues would have acted then, and continue to act today, so I’m talking about the protocols they follow more than about specific people. Aside from that, the only changes I made that come to mind were deletions. I took out a lot of material simply to avoid repetition and to keep the story moving forward.

A: In addition to having written this memoir, I read quite a lot of other people’s memoirs, particularly those written by parents who have kids with problems. One of my favorites is by sportswriter Frank Deford, concerning his daughter, who was born with cystic fibrosis. I believe she was born in approximately the same time period as my son Joseph, which is to say a couple decades ago.

The treatment protocol for CF in those days was rudimentary, and she died at an early age. But for as long as she lived, the doctors did everything they could to help her. And her father, in writing his book, did not fault them. With the exception of one or two individual doctors who got on his bad side, he had nothing but praise and gratitude for their efforts. They tried, in his daughter’s case. That’s all that can be asked. Just to try.

In Joseph’s case, nobody tried. The attitude was, rather, well, your son’s condition, whatever it may be, just happened. I maintained that it’s not sufficient to say it “just happened.” We live in a causal universe. Effects have causes. And I could not believe the lack of intellectual curiosity on their part in wanting to understand what had happened, in order to know (a) what to do about it and (b) whether our family was at risk of having it happen again with a subsequent child. And my observation is that the same still goes in the case of a whole lot of kids with developmental disabilities born today.