What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

The Book

Once I started reading I could hardly put it down. Ann Beattie.

– Ann Beattie

... more

The Blog

Hello and welcome! This is the second website I've launched that was motivated by the campaign to help my son Joseph overcome his disability. The first, kidsbright.org, was active for about four years beginning in 1999. Portions of it are still in Net archives and may in due course be incorporated into this one. However, that site existed to share information that I'd found to be important when dealing with developmental disability, whereas this one is primarily the home of my memoir.

29 years and counting

path through maze“So, tell me. What brings you here today?”

“Well, my son here is 29 years old, and he doesn’t have a diagnosis. My understanding is that the state of the art has now advanced to the point where it may finally be possible to get one.”

The intake consultant looked incredulous. “Twenty-nine, and no diagnosis?” She watched him for a moment. He had appropriated the paper tape measure she’d used to measure his head circumference and was now obsessively waving it about in the air. “What’s wrong with just saying he’s autistic?”

“Some people have said that. It’s a convenient handle. But it doesn’t explain anything. No interventions for autism have ever helped him. The treatments we’ve pursued all these years have just been based on guesswork. Some doctors have said categorically he’s not autistic, and a few have pointed out some subtle physical traits that suggest genetic involvement—a deletion or duplication somewhere.”

As often happens, I was saying more than this lady wanted to hear. She attempted no further conversation and just entered a few bits of data into the computer system before leading Joseph and me to the examining room.

We were at Cedars-Sinai Medical Center in Los Angeles, having driven up for the day from San Diego in hopes of finding a genetics specialist willing to provide the diagnostic test that (for reasons I will never understand) the clinic in San Diego had failed to run. Almost four months had passed since Joseph’s wasted appointment there, during which time I’d fallen back into the aggravation and alienation I’d known when he was a baby: You doctors don’t find his problem interesting? You have no curiosity? You see no reason to follow through on your own promises? You don’t return my calls? Why did you go into this line of work in the first place?! Well, never mind. Watch us go elsewhere.

(I’d thought I was now too old for the kind of adventure described in my book, but maybe not. That emotional track is still well polished.)

Okay, okay. Bernie Siegel has explained, and given examples to show, that potentially irritating setbacks can actually be blessings in disguise. If the doctors at Cedars-Sinai help Joseph to a greater extent than would have been possible in San Diego, then ultimately it’s good that events conspired to take us up there.

And that may be. I struggle with that kind of thinking, however. God’s plan for the universe might turn incompetence, evil, or tragedy into good, but my point of view is constrained by experience.

Joseph’s thoughts on this (or any) subject are, as always, less accessible. I would gladly give this space over to him if I could. A point of view does appear to be in there. The social worker who saw us next and the physician who followed both perceived it. For example, after hearing us discuss him for a few minutes, he became visibly unhappy. Who wouldn’t? How’d you like to sit in the presence of people discussing your pectus, hypotelorism, and short fingers?

missing volumeResponding to his discomfort, Dr. Saitta switched to a more generalized topic, comparing a person’s genetic code to a set of encyclopedias. At the time Joseph was born, genetic testing would have revealed whether a volume from the set (say, the book for the letter M) was missing, or if an extra copy were present. We’ve known that isn’t the case. The new test I’ve been pursuing can show if one line of type is missing anywhere in any volume. There is further (more expensive) testing that might spot errors at the word level (e.g., fudge instead of judge). The doctor said spaces between the “words” are her discipline’s next challenge. Work remains to be done, but she seems to be on the leading edge of it. We’d come to the right place.

We got the blood draw, and in a couple weeks should have the result.

Joseph at 29I don’t know if anything can be done in terms of therapy that might improve Joseph’s options in life. That’s a separate question. But it seems to me that an understanding of what we’re up against would be a really good first step.

After 29 years of messing around.

It’s understandable that even specialists don’t know everything about this stuff. But I will never understand the continuing habit of so many providers to treat patients the way Joseph has been treated time and again. Their only redeeming quality is the ability to energize me for renewed efforts. Which occasionally lead to someone like Dr. Saitta.

How I became a fanatic

Obsession

Years ago, my wife Judy and I had a baby with problems. Something bad must have happened to him prior to and/or during birth. We didn’t know that at the time. I mean, he looked great! But as an infant he cried pretty much nonstop and vomited frequently. And then he began missing developmental milestones, such as learning how to crawl.

Judy and I wanted to make things right. Who wouldn’t? The little guy depended on us. And by the way life at our house was not much fun. So we wasted no time in taking him to doctors. We found it a little confusing when those doctors simply told us to wait.

Waiting’s hard when a child shrieks all day and night. Judy and I were new at parenting, but surely this had to be outside the norm. How did other parents handle this kind of situation? Judy thought some people in our shoes might even hurt their kids. There were stories like that in the news. Lacking a better idea, she phoned a child-abuse hotline.

“What do people do?” She demanded. “What do they do when their baby keeps on crying and crying and crying?”

The counselor said it sounded like a medical problem and we ought to be seeing a doctor.

After the first year, the many doctors we continued seeing began to change their message. Instead of asking us to be patient, they now said we had to accept reality. Our son would always be different.

What condition did he have, then?

They didn’t say.

He still cried, still threw up, remained immobile. Would this be his future indefinitely? Were we seriously expected to accept this on his behalf?

Actually, we were. One doctor said to park him in day-care and get on with our own lives.

But why? What caused this?

“It just happened.”

When pressed, another pediatrician mentioned the existence of unconventional therapies. “But I’m not going to talk about that,” she added. “You’ll need to ask other parents.” Those other parents put us in touch with a provider who had a partial answer. Joseph had been hurt during delivery, she said. His skull had been compressed and could not expand. He was in pain.

The fact that she was able to alleviate his discomfort, and stop the crying, led us to believe that she’d been at least partly correct.

And later, when another alternative resource showed us how to get him crawling and then (at 39 months) walking, we felt sure that we were on the right track. And that the right track did not involve mainstream providers.

I began writing about the adventure, but the story took a less-upbeat tone as it continued following our trajectory. Years were passing, and Joseph hadn’t acquired speech. Oh, there were a few startling instances in which he said something—and then looked as surprised as we did—but even those tapered off.

I should add that there has never been doubt regarding Joseph’s own desire to have normal abilities. He was our active partner in the cause.

But Judy and I couldn’t ignore accumulating side effects of the effort (we were the ones doing the therapies, all day, every day), and the ongoing frustration, money worries, exhaustion, and loss of perspective. For her, all this led to illness, eventually to death.

And Joseph remained far from where he needed to be, if he was ever going to have any real options in life.

Belatedly seeking balance, I traveled, remarried, fathered and raised a couple new kids (blessedly free of developmental issues), and revived long-forgotten interests such as music.

Joe-arboretumAll that helped me, and hopefully the others around me, but accomplished nothing for Joseph. And so I couldn’t stop seeking providers who might have ideas. Incredibly, I still didn’t know the cause of his condition, or how it prevented him from acquiring skills. That meant everything attempted was a crapshoot (as it had always been; we’d just been lucky with those early efforts). Since interventions still tended to involve significant effort and financial outlay, my determination began to resemble a gambling addiction.

But what’s the alternative, when you see your first-born son sliding backwards? He has begun losing important abilities that I thought were solid!

Recently I took him to a genetics specialist (the only one in town) who said a new diagnostic test would most likely finally identify the cause, at least, of our troubles. For unknown reasons, the illustrious doctor would not perform that test. But gatekeepers bring out my inner bulldog. Joseph and I now have an appointment with specialists in another city, and if they don’t work out we’ll look further.

And when I know what he’s got, that will be one step along the path.

Seeking resolution

developing_trayThe last several weeks have contributed a new dot in a pointillist picture that has been slowly emerging, like a photo in the developer tray, throughout my son’s life.

The image still isn’t entirely clear. Often I have thought it shows a medical system that’s content to ignore the needs of helpless children who depend utterly on whatever interventions it might offer. That’s what I see when I’m angry. At other times, it looks more like a depiction of the futility of human effort. But the picture continues to take shape, with excruciating slowness, and maybe something more encouraging can yet emerge.

A little background: Joseph has a poorly understood developmental problem that has prevented him from being able to do anything constructive throughout his life, or even to interact normally with others. My memoir covers some of the avenues his mom and I pursued in hopes of making things better for him. And with his cooperation we did actually improve the quality of his life. Significantly. I think our story shows in part that it is worthwhile to extend yourself, and take risks, in pursuit of a cherished goal.

But our achievement of that goal was far from complete, at least partly because we never really knew what we were dealing with. Until you identify your problem, anything you do is guesswork. At various times in his early years Joseph’s doctors used terms like brain injury, cerebral palsy, encephalopathy of unknown etiology, autism, and (my favorite) “he’s got something but we don’t know what.” Treatment programs for such conditions have tended to be controversial, which means not endorsed by mainstream medicine. Which does not mean mainstream medicine had anything of substance to offer. (Please note that I do not blame doctors for what they don’t know. I do sometimes think a bit more effort on their part, in the interest of learning how to help a problem patient, would not be amiss.) For lack of an option, Judy and I took the route into controversy. Quite a few people we knew, or knew of, did likewise on behalf of their developmentally challenged kids — and claimed success! However, without a real diagnosis, we had little assurance that our efforts were being properly directed. When you do something for a period of time — something that may be very difficult and/or very expensive — and you see no result, what does that mean? Should you stop, or should you double down on the theory that more is needed? Questions like that can make a parent crazy.

When Joseph was 16 or 17 years old, a doctor visiting from the East Coast saw him and told me, categorically, that he was not autistic. Instead, various subtle cues I hadn’t even noticed meant that a genetic error was almost definitely at the root of his problem. Well, perhaps that would explain why all of the interventions reported to help with autism had failed us so miserably.

Next question: What, pray tell, is the genetic error? Maybe I’m just a geek when it comes to medical issues, and maybe I know only enough to be dangerous. But it seemed to me then, and still does more than ten years later (This spring he will have his 29th birthday; my boy is practically middle-aged!) — it seems to me that understanding the underlying mechanism would be a necessary first step toward real treatment. I mean, if for example he cannot produce some enzyme or cannot regulate some metabolic process, conceivably something might be done about that. Isn’t this worth exploring?

What has followed has been a series of widely-spaced visits with an eminent specialist in genetics/dysmorphology (ironically, someone who examined Joseph as a newborn and pronounced him free of genetic abnormalities, based on technology available at the time). I’ve tended to seek out meetings with this gentleman whenever my personal research suggests a known condition we might test for.

For example, in 2007 I read about Smith–Lemli–Opitz syndrome (SLOS), an inborn error of cholesterol synthesis (Joseph’s blood tests always showed low cholesterol) that shares many characteristics with autism, e.g., hypersensitive to auditory stimulation and obsessive-compulsive behaviors such as hand flicking. This sounded promising to me, but the doctor thought it highly unlikely because that syndrome comes with other traits that Joseph doesn’t exhibit. He did order a test, to placate me, but due to a series of snafus with the lab that test was never run.

Late in 2013 I read about 22q11.2 deletion syndrome, which comes with heart abnormalities, lowered communication skills, and poor ability to stay on task, and is impervious to autism interventions. Another possible match! Back Joseph and I went to the good doctor. Again, he said that was an unlikely diagnosis. He did mention this time that the state of the art has advanced significantly in diagnosing missing/duplicated genes and offered a reasonable hope that something called an array comparative genomic hybridization test might yield the answer for which I’ve searched so very long.

Incredibly, after six weeks I cannot seem to get this test performed. Repeatedly, I’ve taken Joseph to the lab for a blood draw, and the lab has said the paperwork is unclear, the order isn’t in their computer, etc. Somehow, going back to the doctor’s office does not help. Calling means leaving a voicemail that isn’t returned. Barging in there in person gets me a nice receptionist who says the doctor and his secretary are “not in today,” and who prints out more paper that the lab again refuses to accept

This test IS going to happen. I am not giving up.

But what picture is coming together with all this? Are we seeing primarily the sublime indifference of people presumably in a position to help? Is this simply an object lesson in my own unproductive, compulsive behavior? In weak moments I begin to wonder how productive any activity truly is. All this bustling about certainly keeps one occupied, but results are nice, too, aren’t they?

By the way, in warming up to get all this off my chest, I typed the following phrase in Google:

WHY IS IT SO HARD TO GET ANSWERS?

The first hit to come up with that is a post by another parent, also worried about her kid:

circle_of_moms_com

Peak Reading Experiences of 2013

reading

It’s easy, this time of year, to find articles discussing the best books published over the last twelve months. (Here’s an example.) I can’t write those articles, since my reading tends to hone in on certain subjects, and in any event more than a year is often needed for a title to make its way to the top of my queue. So although the following aren’t necessarily new, these are significant literary works that I was glad to read in 2013. If you discern a common thread running through these summaries, it’s not accidental. (My previous year-end lists are here and here.)

As a Child: God’s Call to Littleness, by Phil Steer

This is a very comfortable, conversational presentation of an idea that doesn’t get enough attention, i.e., the admonition by Jesus that a believer’s proper relationship toward God is that of a child toward a loving parent. The chapters are short and easily digested, which seems appropriate. A scholarly or theological treatise would hardly fit with the theme, although the author does remain closely grounded via a multitude of references to Scripture. Pulling off what he has done is quite an accomplishment, I think. Steer insists that the call to be childlike does not mean abandoning the things we must do. He explains that using the parable of the talents, which had always been obscure to me. As I understand it now, the message is that, when given a challenge, we should try. Not trying, for fear of failure, would be worse than failure itself. There’s no escaping some degree of failure, just as a child learning to walk cannot avoid tumbles. But children don’t give up. Children take chances. We should, too.

The Man in the Empty Boat, by Mark Salzman

Salzman is a writer whom I would particularly enjoy meeting and getting to know. Perhaps that’s because, as he mentions in this memoir, his characters, real and fictional alike, are “tormented by the gap between who they actually are and who they had hoped to become.” It’s likely that everybody in the modern age experiences that disconnect to some degree. I certainly do. In this book he shows explicitly that it’s true of himself. His achievements, while pretty darned impressive from where I sit, do not impress him. To some extent, that’s due to having set rather lofty goals. He says, regarding his adolescent ambition of attaining true enlightenment: “Wise people adjust their expectations. They stop comparing themselves to Buddha or Batman and trust themselves to achieve their personal best. Not me; I was not going to capitulate … I was not going to be a quitter.” That is precisely the way I felt about the campaign I waged for several years to rescue my little boy from a mysterious developmental disability. Didn’t matter how difficult the task became, or how many discouraging comments I heard. I intended for us to reach our objective! Popular culture encourages that kind of thinking, through all the familiar stories about the underdog who finally prevails against overwhelming odds. And I’m not prepared to say that’s a bad thing. We should hitch our wagon to a star. But somehow we also need to find a perspective that allows us to survive reality without coming unglued. I think that challenge is what Salzman’s writing is mostly about.

The Beach Beneath the Pavement, by Roland Denning

Bernard Hawks is “the journalist famous for not believing in anything”–other than, perhaps, that “only mad and dangerous people believe in anything.” Since he himself believes nothing, it’s of no consequence to him if his readers fail to take his writing seriously. Therefore, his style (when he bothers to write at all) is to be intentionally outrageous and offensive. But at the beginning of this delightful novel, there’s an explosion–presumably a bomb. It goes off in an ad agency, and by chance Bernard’s latest column had said something to the effect that ad agencies should be bombed. This naturally leads to the first of several uncomfortable visits from a slimy police detective, who’s sure that if Bernard is not a culprit he at least knows the responsible party. The delivery is rather amusing. I chuckled all the way through. But it’s also (I think) a serious inquiry into the nature of reality as it’s experienced in modern civilization. “How do you operate in a world where there is no longer any belief?” Or where the only belief is modeled on a faulty cause-and-effect narrative. This is really good stuff, in my view, the product of considerable thought and cleverness. It deserves to be read.

We Need to Talk About Kevin, by Lionel Shriver

I found my way to this novel via a profile on the author that appeared in The New Yorker. Shriver’s reported focus on unmet expectations/thwarted possibility sounded very much in sync with one of my own preoccupations, i.e., the problem is not merely whatever bad thing has happened, but also the good things that might have happened in a banished parallel life, that in fact did not. Although I plan to read more of her work, I started with this story in which a mother is looking back over the chain of events that led to her son becoming an unrepentant mass murderer. It’s a horror story–the most articulate, thoughtful, and convincing horror story you could ever want to read–in that it proceeds with an implacable inevitability to the known conclusion. Obviously, the parents–highly educated, self-aware and sensitive–wanted something much different. Now, in letters to an absent husband, the mother is carefully parsing events and her own motives and actions in relating to Kevin as he grew up. She mentions (unnecessarily) that “the last thing I’ve wanted is to whitewash my own part in this terrible story,” and because of her honesty some readers see the mother as being despicable. I see a yearning to pursue the truth no matter where it leads. (And by the way, as a memoirist I’m sympathetic to that.)

In the Shape of a Man, by Paul Clayton

This novel portrays a problem that plays out in two neighboring homes in a modest San Francisco suburb. In one, Allen Collins feels tired from working long hours at a meaningless job and uneasy about indications that his wife has begun rejecting (hopefully not abusing!) their adopted son Reynaldo. Allen tries to tell himself that they have a good life together, but he knows something is very wrong. He knows there will be no improvement if he does not take steps. On the other hand, every course of action available to him has unattractive costs. And so the steps he takes lead only to a nearby bar. Down the street, a young adult named Rad is brimming with energy but has no good outlet for it. He could be a great professional skateboarder, if only he could get a sponsor. Failing in that, he turns his focus to community activism, and then to a seductive girl. Meanwhile, Tawny, the woman with whom he has been living, has missed her period. All these people are exposed to others who appear to have more stable and satisfying lives, and who offer points of reference, if not actual guidance. But outsiders can do very little. The choices each of us faces are ours alone. In the Shape of a Man is a story about ambivalence, about finding distractions and dodging responsibility because nobody sees a clear reason for doing otherwise.

36 Arguments for the Existence of God: A Work of Fiction, by Rebecca Newberger Goldstein

In the hands of a gifted writer, even dry philosophical debates from bygone centuries can make delightful drama. This is a case in point. The drama here is in the life of Cass Seltzer, formerly a pre-med student who changed course in pursuit of a more authentic life, becoming over the next two decades practically the only academic specializing in “the psychology of religion” and ultimately authoring a book on the subject. Its publication happens to coincide with a renewed public interest in a debate that had supposedly been settled 300 years earlier, and consequently he has become a minor celebrity, much to the dismay of colleagues who view the very question with contempt. Cass is a good-hearted, earnest seeker after truth and peace, astonishingly resilient in the face of disgracefully mean-spirited and pretentious professors, colleagues and even lovers. He never feels anger on his own behalf. He’s simply in love with life, with existence, with being here, and I had absolutely no trouble seeing everything through his eyes.

The Uncanny, by Andrew Klavan

This is the fourth Klavan title I’ve read, and it helps clarify his focus. Previously I’d thought Klavan was motivated mainly by politics. His Empire of Lies has a celebrity figure, coddled by the media and academe, who spews cultural poison. The Identity Man has a despicable demagogue en route to high office. And having seen a few of Klavan’s short written and video efforts, I knew that he attacks the same phenomena in real life. But, fairly early in The Uncanny, one of the characters comments that the problem goes way beyond politics. The real adversary is naked evil, recognizable by what it does to us (i.e., never mind good intentions, if something causes genuine harm then it’s evil). Klavan’s other novels provide glimpses of the kind of evil that makes you recoil in horror or disgust, but here it takes center stage. Life is very much an imperfect proposition, which we see in the conclusion of this one: The heroine’s father has just died, and the man she now realizes she loves is dying as well. But at some point there is danger in attempting to improve on or overcome basic realities.

A Few Good Men, by Sarah A. Hoyt

Our current world structure has long since crumbled (presumably because the population split into groups who nurtured grievances with one another), and what has risen in its place is a worldwide feudal system under the not-so-benevolent rule of about 50 elite “Good Men” (hence the book’s title), each in charge of his own domain, and all of them more or less in league to continue the exploitation of everyone else. The story is told from the point of view of Lucius, the heir of one of those despots–who is also essentially an outsider, learning the true lay of the land along with the reader because he has spent the last 15 years in prison. Lucius has always known about the existence of a generally despised network of people who cherish long-dead ideals (along the lines of individuals having innate rights, as opposed to existing to support their betters). But then it turns out that his father’s retainers are closet members. Having just ascended to power, he isn’t predisposed to accept their point of view. Sound interesting? It’s sci-fi but also the best overtly political work I’ve read this year.

What’s Missing?

missing toolsThis morning, while cooling my heels in the waiting area of a medical clinic, I happened to find an article by Atul Gawande that appeared in an old issue of the New Yorker. If you’ve read WATB, you may remember that I quote him in the final pages. He’s a surgeon who appears to have an enlightened view* of how health care ought to be delivered.

This article mentions a patient with terrible migraines–”She took her medicine, but it wasn’t working. When the headaches got bad, she’d go to the emergency room or to urgent care. The doctors would do CT and MRI scans, satisfy themselves that she didn’t have a brain tumor or an aneurysm, give her a narcotic injection to stop the headache temporarily, maybe renew her imipramine prescription, and send her home, only to have her return a couple of weeks later … She wasn’t getting what she needed.”)

Sometimes when we seek medical help, we get exactly what we hoped for. That was the case today. My wife was experiencing problems with her vision, and the doctor not only knew what was going on (she had a torn retina) but was prepared to address it right there on the spot. She wouldn’t say that she’s all better now, but we’re glad she got the intervention.

After such a visit I tend to feel a sense of gratitude that may be out of proportion to the help rendered. There’ve been times when the warmth of my feelings toward a helpful physician has gone right off the charts.

That’s partly because there have been other times when our experience has more closely resembled the story of the woman with migraines. WATB recounts the misadventure of repeatedly seeking professional help for a child who obviously needed help very badly, and being told repeatedly to stop worrying so much and just get on with our own lives.

Physicians who dish out that kind of treatment always seem surprised to discover that patients (or parents of patients) who are sufficiently anxious about the condition they’re facing are going to do something. We might not make choices that are advisable, but we’re determined to tackle the problem, with their support or without.

But what if nothing can be done? In the case of our son Joseph, my family did not accept that view, because his doctors gave little or no indication of having exerted themselves on his behalf. Somehow, even without a diagnosis for him, even though they would not say what was interfering with his development and causing him so much distress, they expected us to believe that there were no answers.

We didn’t believe them. And when we then took an approach that they didn’t like–he began to improve. Thereafter, we believed them even less.

Gawande’s article is about the kind of treatment that should be given to doctors’ “most difficult patients”–the ones who (like my family, until we became alienated) continue coming back with the same unresolved problem. He finds that these patients desperately need (and benefit from) someone who is willing to tackle it in a systematic way. The person offering this kind of help needs to be someone they can trust, because he will likely get somewhat involved in their lives. Obviously, this kind of high-touch care is far outside the accepted job description of your average doctor. Gawande calls it “the kind of primary-care service everyone should have,” but says it’s absolutely essential for those presenting complex challenges, as Joseph did. (He sees reason to believe that this approach would also lower costs.)

Unfortunately, the delivery of health care as we know it has no room for patients like this. We’re offered impersonal office visits and E.R. visits/hospitalizations but little or nothing in between. Gawande compares this to “arriving at a major construction project with nothing but a screwdriver and a crane.”

The news these days is all about something being called healthcare “reform,” and mounting evidence that the changes being implemented will make the missing ingredient still harder to find. I’m afraid we have gotten off course. Rather badly.

 

*Specifically, what I love about Gawande’s philosophy is his agreement that patients are correct in expecting their doctor to make a special effort on their behalf, and his advice to doctors to “always look for what more you could do.”

Taking the long view

long view

While our child is sick, we parents quite naturally see his speedy recovery as our number-one objective. We take him to the doctor. We get the appropriate medications. We keep him comfortable. And, almost always, he does recover very soon. Then everyone can return to more pleasant activities.

It’s natural to want a similar outcome if health issues arise that present a greater challenge. And of course, there’s nothing wrong with high expectations. Optimism is part of healthy living. When we believe things will work out well, we are happier and also better able to reassure a child who may be confused or frightened by his circumstances. This does not change the fact that some conditions, such as developmental disabilities, have no easy cure.

As the father of a little boy with poorly understood developmental challenges, I assumed at the beginning that surely some specialist out there would know how to help. All my wife Judy and I had to do was locate that expert.

Our son Joseph was not sick, in the sense of having an infection. There was no obvious injury. But he was in distress and functionally in terrible shape. He cried all the time. He had trouble keeping down his milk. Months passed and he failed to achieve the usual developmental milestones, such as crawling. No one who examined him seemed to know why. No one seemed particularly disturbed by the fact that they didn’t know why. No one recommended any treatment. This lack of a decisive response from the professionals upset me as much as did the problem itself. My reaction did disturb the doctors. I was not being reasonable, they said. Perhaps I needed counseling.

I reminded the doctors that I was not the patient.

Judy and I broadened our search and eventually did find providers who said they understood what was going on with our little guy. They offered alternative treatments—interventions not endorsed by the mainstream medical community. Some of these providers helped him. By the time he was two years old, he had finally stopped crying and had begun to pay more attention to the world around him. He no longer vomited every day. He had finally begun to crawl.

Judy and I believed that, at long last, we had found a path that would lead our family out of the distressing circumstances that had prevailed since Joseph’s infancy. Finally, we could look forward to enjoying a normal life with our son. And pending the arrival of that happy day, we felt enormously upbeat.

We understood by that point that the road would be long. I thought at the time it might take another two years.

Two very intense years later, Joseph had become a capable long-distance walker. He could swing by his hands on playground equipment. To a casual passer-by, he looked fine. But some problems lingered. Most alarming was the fact that he didn’t talk.

The alternative providers who had helped get him to this level could not address the remaining challenges. Judy and I renewed our search. Again, we found people who professed to have answers. This time, we were not so fortunate in the outcome. Joseph’s progress slowed and came to a halt. Today, he is a healthy, amiable adult, aside from the inescapable fact that he’s still disabled.

Obviously, the campaign to help him was not futile, because he did achieve major quality-of-life improvements. But it is also apparent to me that the trajectory of our campaign was problematic and more difficult than necessary. It brought us moments of utter joy but also intense frustration.

Neither emotion cancels out the other.

Sometimes life introduces circumstances unlike anything we would have chosen. And sometimes no good exit from those circumstances is apparent. Personally, I believe that it is reasonable to seek solutions for problems, even when those problems resist one proposed remedy after another. A single-minded pursuit of answers can inspire confidence and give life new direction. At the same time, parents of a disabled child must remember to take the long view. We must be kind to ourselves now, while we work toward a better future, even without attaining the longed-for objective, because this moment too is life. This moment too can be all that we make of it.

Our kids need that reaction from us, too.

Poems by Tianze Ni

opposites

Tianze Ni is the son of a Chinese friend who lives in the UK. Several months ago, his mom Nina allowed me to share a heartbreaking poem she’d written, a very frank exploration of her experience of raising, and loving, an autistic child.

We adults are certainly entitled to our feelings, opinions, hopes, etc. I have made mine known. But I’ve always wished it were possible to know more about the view from the other side. How do disabled kids see things? What does life mean for them?

That’s why I titled my memoir What About the Boy?, and it’s why I was glad to feature a book of artwork created by another disabled boy. And for the same reason I’m more than happy now to share the following creations penned by Tianze:

The Sun and the Moon
25th July 2013

Sun, Sun like a good boy.
Moon, Moon like a good girl.
Wait till day light,
Then the Moon will become a good boy.
Wait till day dark,
Then the Sun will become a good lady.
Odd numbers like even numbers,
Sun loves the Moon…
Moon love the Sun.
Boys love the girls.
Girls love the boys.

 

Summer time song
15th July 2013

Sun set, sun set, sun set
Beautiful, beautiful sun set.
It is dark red now,
The clock straight toward 9 PM
The sun cuts its head off…

Moon rise, moon rise moon rise now
Beautiful, beautiful moon rise.
It is dark blue now,
The clock straight toward 9:10 PM.
The Moon puts its head on…

Sun rise, sun rise, sun rise now
Beautiful, beautiful sun rise.
It is white colour now,
The clock straight toward 5 AM.
The sun puts its head on again.

If you are upset
28th July 2013

If you are upset, upset,
Just wait and wait,
Till dream and dream
And wake up.
You will be happy again…
happy again

If you are happy, and happy,
Clap your hand.
More happy you will have.

If you are sad and sad,
Just wait and wait
Till dream and a good dream
And dream…
Day will light again.

 

Dance in the moonlight
1st August 2013

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Day light, day light now
Happy and happy again…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car goes to high way
It would no more tummy sore…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car back to home,
It would no more tummy sore…

Sun Rise and Sun Set Song

21st September 2013

Sun rise, sun set,
Sun set, sun rise,
It looks like a switch,
on and off,
Off and on again and again.

I enjoy to play the switch, on and off,
off and on. . .
It looks like playing sun rise and sun set.
It looks like playing the time.

What things make sun set?
Where is the sun sleeps?
It is earth turn around,
It is jesus’ hand switch on and off.

   Lamp Post Song

1st November 2013

Lamp post, lamp post,
It turns off in the day light;
It turns on in the day dark.
It looks like a sun that shines in the darkness.

When I lay down in the sofa,
From home window,
I see lamp post on.
It gives me warm, hope and lights.
It gives me sunshine evening.

NiuNiu

The power of words

word cloud

My wife Judy had been married before we got together. That prior union was tumultuous and short, and the only thing she took away from it was the memory of some hurtful words her first husband had said during one of their arguments. He’d predicted that she would make a lousy mother.

I don’t know what prompted him to say that. I knew her during the time they were married, and was aware of nothing that might have supported his prediction. Maybe he was simply trying to hurt her.

Because I knew him as well, I doubt he meant to inflict lasting harm. He was no more malicious than anyone else, and at one time or another probably everyone utters mean, divisive or negative words.

That’s what I want to write about, because despite the old epigram about sticks and stones, words can indeed hurt.

A disabled child

A year or so after their divorce was final, Judy and I married. And then, some years after that, we had our only child, a boy we named Joseph.

Looking back, I realize that Judy had not been eager to become a mother. We’d seldom discussed the notion of having babies. We concentrated on our careers, on fixing up our house, and on pasttimes such as community theatre and square dancing. Then one day, inspired by the sight of happy families playing with their kids in the park, I suggested that we go ahead and see what parenthood would be like. An expression of panic crossed Judy’s face; but when she saw that I was serious, she nervously agreed that it was the right thing to do. Within an hour, we were both completely sold on the idea of bringing a new life into the world.

Long before we had any physical evidence that he was coming, both of us loved our child and couldn’t wait to see him.

Joseph entered this world with problems. He couldn’t keep his food down. He cried almost constantly. He grew older but did not achieve any of the usual developmental milestones, such as crawling. Despite multiple evaluations and tests, the doctors did not understand what was wrong. Therefore, they also did not know what could be done for him.

My response in that frightening first year and a half was to continue taking Joseph to his appointments, ever hopeful that the doctors would eventually identify the cause of his distress and send us to the right specialist. I trusted that somebody, somewhere, would have the expertise to get our little guy fixed up.

Judy lost patience with that. She believed, correctly, that time was of the essence, and that the longer Joseph waited for help, the less effective any help would be. Since mainstream medical professionals were doing nothing for him, she began exploring options with alternative providers. At first, I objected. I believed anyone not in the mainstream must have been excluded for good reason. But my misgivings were no match for her determination.

One line of inquiry led to another, and before long Joseph was the patient of a kindly old osteopathic doctor who specialized in the arcane science of cranial therapy. This treatment finally put an end to Joseph’s irritability and frequent vomiting. In turn, the outcome put an end to my doubts about Judy’s course of action. Thus encouraged, we found our way into an arduous and controversial home therapy program that offered hope of overcoming his developmental delays.

Years passed, and Joseph achieved some wonderful milestones. The most obvious was finally learning to walk independently. But he never attained the total wellness that we had pursued so earnestly. For reasons that are still unknown, he never acquired the ability to talk.

A quest for answers

One bit of wisdom the doctors had always stressed was that parents of kids who have developmental problems should not blame themselves.

Even so, Judy and I could not avoid examining our backgrounds and our selves for an explanation of our son’s condition. We found little. Still, in weak moments Judy confessed to me that she worried about her first husband’s comment. She feared he had perceived something that we did not. She dearly wanted to try again, to have another baby, but was terrified that there might be something about her that would afflict any child born to her.

I can only guess at the emotional depths to which this unresolved question drove my wife.

However, if any blame were to be assigned, the person most obviously free of it had to be our son. He’d done nothing to bring about his misfortune. Therefore, even after exhausting all the good ideas for helping him, we still felt we had a duty to keep trying. There would be no further children in our family, but Judy and I meant to do anything possible that might enable Joseph to move another step or two along the way toward independence.

For example, just as Judy had led the charge in finding alternative healthcare providers, she also began exhorting me to recognize the importance of speaking words in support of desired outcomes. Any time I became discouraged, she cited Scripture, urging me to “call things that be not as though they are.”

The words we speak, she said, have enormous power to hurt or to heal, because our subconscious mind hears and acts on them. The best use of our words, she insisted, is to give encouragement and comfort, and to remind the hearer that things can be better.

We’d spent a great deal of time over the years discussing what was wrong; but now, she decided, we needed to guard what we said. We needed to focus on what was right. Joseph desperately needed to hear it, and so did we.

Perhaps it was too late by then. Perhaps constructive language could not reverse a process that by then was already well under way. Perhaps understanding these things intellectually did not cancel out what occurred on an emotional level. At any rate, instead of seeing improvement in Joseph, Judy herself fell ill, and two years later she died.

Our little guy was nine years old when he lost her.

As for the ultimate cause of his mysterious condition, it’s possible to look for explanations where they don’t exist. One doctor had told us that, whatever had gone awry with Joseph’s development, it was something that “just happened.” As for our response, I do think that our love for him provided ample motivation for the choices we made. There’s no need to attribute our efforts to help him to a sense of guilt. On the other hand, I have no trouble believing that Judy was also motivated in part by a desire to prove, once and for all, that she was a good mother. Even if she was the only person needing that proof.

If that was the case, the effort cost her everything.

Sometimes we can only speculate. I don’t know why Judy died at an early age. But it would be a good policy for all of us to consider the possible consequences of our words before we speak them. Lives may be at stake.

This article was originally published by Utterly Frank.

A review of The Man in the Empty Boat

Salzman book cover

I first encountered Mark Salzman’s writing when participating in a memoir writers’ critique group that met over a period of a couple years. The group leader suggested Lost in Place as a good example of the genre. I thought it was a wonderful book, and (after finishing my own memoir) went on to read his other works.

Along the way I decided that Salzman is a writer whom I would particularly enjoy meeting and getting to know. Perhaps that’s because, as he mentions in this more recent memoir, his characters, real and fictional alike, are “tormented by the gap between who they actually are and who they had hoped to become.” It’s likely that everybody in the modern age experiences that disconnect to some degree. I certainly do. In this book he shows, more explicitly than before, and with much humor at his own expense, that it’s true of himself. His achievements, while pretty darned impressive from where I sit, do not impress him.

To some extent, that’s due to having set rather lofty goals. He says, regarding his adolescent ambition of attaining true enlightenment: “Wise people adjust their expectations. They stop comparing themselves to Buddha or Batman and trust themselves to achieve their personal best. Not me; I was not going to capitulate … I was not going to be a quitter.”

That is precisely the way I felt about the campaign I waged for several years to rescue my little boy from a mysterious developmental disability. Didn’t matter how difficult the task became, or how many discouraging comments I heard. I intended for us to reach our objective!

Popular culture encourages that kind of thinking, through all the familiar stories about the underdog who finally prevails against overwhelming odds. And I’m not prepared to say that’s a bad thing. We should hitch our wagon to a star.

But somehow we also need to find a perspective that allows us to survive reality without coming unglued. Maintaining that perspective requires work every day, and some days a lot of work. The Man in the Empty Boat focuses mainly on 2009, an unusually difficult year for Salzman (and for me, come to think of it). During that year he began suffering debilitating panic attacks (although he didn’t know what was happening and reasonably supposed death could be imminent), he was compelled by the family to accept a very objectionable pet into his life, and worst of all he witnessed his sister’s death, described here in agonizing detail. At the lowest point, he admits:

“At that moment, I asked myself: If there was a button I could press, and I knew that pressing it would make every human being on the planet disappear instantly, painlessly, forever, without a trace, so that the whole bonfire of fear and hope and confusion and pain would be over with, once and for all–would I press it? My own children, I reminded myself, would dissolve along with everyone else. Everything dear to me, and everything dear to everyone else would disappear. So would beauty, courage, love, tenderness, curiosity, ambition, art, science, technology, history, knowledge, consciousness–all of it would be erased. Would I press that button?
God yes, I thought. I would press it in a heartbeat. And I felt truly sorry that no such button existed.”

He returns to that thought in the concluding chapters, first using it as a framework for a new understanding of life (actually, we are all in the process of disappearing–albeit very slowly) and finally, after considerable thought, promising that the button has lost its appeal.

One admirable aspect of Salzman’s life that he scarcely mentions here is his music. According to his official biography, ability to play the cello facilitated his acceptance to Yale at age 16, and he has played with Yo-Yo Ma at Lincoln Center. (By way of contrast, a previous blog post covers what I’ve done with music.) I’m also envious of his fluency in Mandarin (my progress in that language plateaued long ago) and, to be blunt, of the fact that money doesn’t appear to be too much of a consideration in the life portrayed here. I suppose, in wishing to know him, I really want to understand the path to enjoying the blessings he has, even if more would have been nice.

But sometimes, at least, answers come unexpectedly, from unlikely sources. One clue presents itself at the end of The Man in the Empty Boat, conveyed with Salzman’s trademark humor and reliably vivid writing. I now think he has spelled it all out as clearly as is possible.

Another echo from our life

f-hole

We try. All of us.

In one way or another, wisely or not, effectively or not, most of us endeavor to do more than just plod through our days, passively accepting whatever bones or brickbats fate tosses our way. We seek to make the bad things less bad, the good things better, and ideally sometimes even to bring about some wonderful or fulfilling enhancement that’s all our own.

To a huge extent, my efforts have been connected in some way with the massive brickbat that prevented my firstborn son from having options in life. That adventure prompted the writing of WATB and most of the content you see on this blog.

But there are other corners of life as well—areas that might have benefited from a little more attention, had that been feasible. Perhaps you’ll like this little reminiscence.

Finding Joy in Treble Clef

My father was a violinist from what I think of as “the old German school,” and by that I mean to say he took a very stern, no-nonsense approach to playing. I know he did enjoy listening to good music. But when Dad picked up his own instrument, pleasure seemed to be the last thing on his mind. His focus remained on technique. Was that left arm supple enough? Were those fingers consistently coming down on the strings like little hammers? Although an accomplished musician ought to have progressed beyond such challenges, Dad had begun noting the effects of arthritis. He believed he might slow the progress of that malady through painstaking attention to every detail when playing. So he practiced by the hour—but only scales and etudes. I don’t recall hearing him play actual pieces. Surely, music must have meant more to him at an earlier point in life, but that would have been before my time.

Dad gave me my first lessons in the violin, and he made darn sure I never formed any of the typical beginner’s bad habits. The palm of my left hand never, ever contacted the neck. The instrument remained parallel with the floor. And that bow grip: just so! Then of course there was mastery of time signatures and keys and all those other wickets that he said separated respectable players from the pretenders.

This background enabled me to elicit appreciative nods from subsequent teachers.

But something important was missing in my understanding of music. Let’s call it joy. I practiced with the school orchestra in the same frame of mind that I took to math class. Eventually I noted that only one of those activities was actually required. As a teenager, I gave up playing.

Some years later I had a little epiphany while watching a friend playing guitar at a square dance. That guy looked just as happy as it’s possible for anyone to be, and obviously his happiness came from the creation of music. This, I realized, is what music is really about: calling forth the appreciation of life in yourself and others.

Yes, technique makes all the difference in producing the sounds we want to hear. On the other hand, good musicians know that “playing by the book” is a soulless pastime.

Adults have complex lives, with competing obligations and little free time, but I wanted to get back into music. Fearful of slipping into the same old groove, I switched to guitar. Much later, I began piano lessons. I enjoyed both instruments, but over time realized that they just weren’t my instruments. Finally, in 2008, I picked up the violin once again, after having been away from it 40 years.

Guess what, Dad? I still had the muscle memory for holding and playing it correctly (albeit without much panache). Some things we never forget.

Today, music evokes a sort of bittersweet affection. The violin feels like a girlfriend from whom I’ve been separated all my life. I cannot avoid wondering what we might have done together. But on the other hand I’m raising a couple of kids who now play it as well, one of whom is already better than either my father or me. It’s an honor, and a responsibility, to be able to influence the trajectory they take.

If they absorb just one thing about music from me, I hope it’s love.

susannah recital