What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category healing

 
 

Only Connect!

connect

Today a friend told me about this documentary film (and book), Life, Animated, which relates the story of an autistic boy who acquired the ability to speak via his fascination with Disney videos. Apparently (I have yet to see it), the child absorbed key lines of dialog from multiple viewings, figured out how to repurpose those lines for his own interactions, and later added other phrases to his repertoire. Judging from the film’s online trailer, the momentum established by doing that eventually led to his graduation from school.

Now, this is not meant to suggest repeated exposure to videos would offer such a remedy to anyone else—although finding out would be a lot less intrusive and expensive than is usually the case. (I recall short-lived and arguably destructive frenzies over other ways of attacking the problem, many sparked by parent stories just like this one. I too wrote such a book, although its effect seems to have been cautionary.)

josephoct2016

For lack of a better label, my adult son Joseph is also considered autistic. He cannot speak, or initiate any constructive activity. People tend not to talk to him, assuming he won’t understand, although he does. He may not take in everything, but he definitely gets the high points. Unfortunately, the other half of the equation isn’t there. He offers no output, other than infrequent fleeting smiles or more common indications of disapproval or frustration or anxiety. It’s frustrating for the people around him, too, because we’re mostly clueless about what he wants. And pressing for clarity just annoys him, making matters worse.

I’d sure like to believe we could improve on this through something as simple as immersion in videos.

The mechanism for how that would work is fairly clear. One does not have to be autistic to acquire memes or catchphrases from popular culture and adapt them for the situation at hand. If you haven’t used phrases like the following, you at least recognize them in conversation:

  • Beam me up, Scotty.

  • We don’t need no stinkin’ badges!
  • I’ll be back.
  • Nooobody expects the Spanish Inquisition!

You might even collect specialized memes that are recognized by only a small community of people who share your favorite interests. I once knew an English professor who made heavy use of Joycean quotes. A coworker and I used to trade cues from Firesign Theatre.

Psychologists say we share lines like that to establish solidarity with one another. To connect. To acknowledge that we are experiencing life together. Perhaps hashtags in social media are a similar device (#WATB).

But for someone who needs it, repeatable lines also offer a first toehold in the mysterious system of interaction. Don’t we do something similar when practicing a new foreign language? I’m far from fluent in German, but dialog from a long-lost textbook is forever imprinted in my brain (Wo ist Robert? / Er ist in München. / Was tut er dort? and so forth).

This seems to be the process for finding one’s way around in a new city, too. First we figure out landmarks and major roads; then over time we fill in details as needed. That’s how I go about it, anyway. A reviewer of WATB has suggested on Goodreads that I may be somewhere on the autism spectrum, but even if that’s true your approach may be similar.

So it’s easy to believe memes could help an autistic child “make sense of the world he’s living in.”

Alas, there remains a gulf between “could” and “does.” The real challenge is figuring out a repeatable way of bridging it.

What is the question that you have pondered longest in your life?

The following is a response I entered to the above question on Quora.com.

For about half my life now I have wanted more than anything else to help my son, who was born with a poorly understood developmental disability. I have never accepted the notion that he was somehow “meant” to lead a circumscribed life or that anyone could be ennobled by that.

Boy_shadow

At first, I was appalled to discover that not only could the doctors not help him but they showed little or no curiosity even in whatever it was that had gone wrong. (First unpleasant lesson (relearned many times since then): Trusted experts and authority figures will let you down.)

Later, I found alternative sources of help that, when coupled with enormous effort on the part of our highly motivated family, did provide the little fellow some options in life. But ultimately those resources proved disappointing as well. (Second unpleasant lesson: Don’t expect life to follow the trajectory of an uplifting movie. Uplifting scenes, yes, but nothing approaching feature length.)

I had been taught, and believed, messages such as this one: “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you” (Luke 11.9). My son’s mother and I asked, in every way we knew how to ask. We sought and we knocked. And while we were doing that, our son lost ground. To top things off his mother died, too.

Now, all this is not entirely a tale of woe, because good things have happened along the way as well, arguably even as a result of my son’s disability. But according to my own perspective, promised blessings have not materialized, which points to some very fundamental misunderstanding.

I am still trying to grasp the meaning of hardship and disappointment. In itself that’s a captivating quest. But answers are elusive and many people presuming to provide them do more harm than good.

WATB_MoA

What about the boy (WATB)? 29 years on, I am also still trying to understand the underlying cause of my son’s problem, motivated by the idea that it might then become feasible to treat it more effectively. This year it looked like an answer was at hand, but that now appears to have been a false lead. I blog about these dead ends, but that accomplishes nothing for him.

I have seen this cause — helping my son and ideally in the process making the way a little smoother for others in comparable

What About the Boy?

situations — as the purpose of my life. It’s a cause I’ve not been able to ignore. But given the degree of ongoing frustration attached to it, I feel more confusion than it seems I ought to at this stage.

Maybe confusion is good. I sensed rather early on that an easy answer to all this would have resulted in my becoming opinionated and insufferable (as, apparently, are some folks who think their having achieved greater success means others are at fault for not doing likewise).

So I personally can live with confusion. But WATB?

What goes on in there?

large building

I began this blog three years ago with links to interviews I was doing at the time to promote my book. Along the way since then I’ve continued chronicling the ongoing story of the subject of that book (my son Joseph and/or the conundrum behind disability), interspersed with occasional thoughts about writing and reading in general (since that too is important to me) and a snippet or two of what I hope is generally useful insight. I see other writers doing the same on their blogs, possibly with more behind-the-scenes peeks into their daily lives, personal neuroses, ambitions, etc.:

  • “This was a good day. Got a chapter finished…”
  • We will not see the like of Elmore Leonard again…”
  • “I really want to go to Hogwarts… I want Hogwarts to be real.”

Typically, the main point of an author’s blog is to let the reading public know about the existence of a certain book. If the blog is amusing or compelling in some way, visitors may feel moved to take a chance and order a copy. At least, that’s what happens when I find a good author site (Sarah Hoyt’s springs to mind). But blogging is much more than simple promotion. As a public record of what is happening in the author’s world, it can be meaningful when those events have a bearing on the author’s subject, or the creative process, or the joy of reading. That’s when web surfers may glimpse a dynamic connecting the author’s life and efforts and shining a light on the reason the book had to be written.

All this is meant as a sort of apologia for the fact that my posts this year have focused on a renewed effort to identify and perhaps even once again help my aging son. That process is a wheel that turns with exceeding slowness, so even when the cause is uppermost in my mind, updates are infrequent. Apparently it must be uppermost in my mind, and I must be persistent, for the wheel to turn at all.

“Patience is a virtue,” according to a very nice lady who phoned yesterday with the results of Joseph’s microarray.

She said that because the medical center will now be initiating a request for another genetics test (this time of me), and she didn’t want me to expect that it would occur at anything approaching flank speed.

Backing up a bit, it’s now finally known that Joseph is missing “a relatively small piece of DNA” on chromosome 11, including part of one gene (identified as LRRC4C). This is “a variant of unknown significance,” because there isn’t a population of other people known to have the same deletion. Therefore, we don’t know if it’s responsible for Joseph’s condition.

Nancy, the lady who called, compared the gene to an anonymous building. We don’t know what goes on in there, she said.

If I too have the deletion, then its familial, likely benign, and we’ll have to look elsewhere for the source of his difficulties.*

However, a few minutes of online research has yielded the news that this gene may be involved in development of thalamocortical neurons, which in turn are involved with transmitting or processing sensory information. It makes sense, at least, that disruption of this might lead to an autism-spectrum disorder, which is the default label applied to Joseph.

(Hmm, I wonder if a full complement of DNA in this gene would also have given Joseph normal height, a heart without a murmur, etc. Oh, and I almost forgot: Perhaps it would have enabled Joseph to walk on schedule as a child. It’s a mysterious building indeed.)

Despite all the above, life for Joseph continues as before. I’m feeding my own inner demon but accomplishing nothing for him. Still, just as technology has emerged to make this test possible, gene-editing therapies may be in the wings.

Maybe.

*UPDATE: Albeit slowly, the story does continue to unfold, which is a reason for new blog posts. But a footnote is needed here to say for the record that we now know I, as Joseph’s father, have the same deletion on chromosome 11. Since I’m not disabled, this is unlikely to be the explanation we’d thought it was. A more expensive procedure called whole exome sequencing can provide more detailed analysis. I would like to have the info that would yield. At the same time, it boggles my mind that we must delve so deeply to find the basis for a condition so manifest.

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.

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

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.”

Joseph’s early history in ten objects

Unpleasant films

There’ve been times in my life when I imagined myself sort of a medical geek, but I doubt anybody wants to see images like this when a family member is involved. I didn’t. When our little boy was one week old, the doctor showed some films to his mom and me, and provided a summary of what they could mean, thereby transforming our joy of parenthood into an agony of fear, horror, and suspense. His scans were unusual but not necessarily significant, according to the doctor, and so we resolved to hope for the best. When things subsequently began to turn out badly, however, those films provided a convenient excuse for doctors to shrug and move on to the next patient. All this technology can be a wonderful thing, but it was not helpful in our case. That’s particularly true in retrospect. Joseph’s brain has been scanned several times over the years, and every doctor who has seen the films has had a different opinion. At this point, however, the verdict seems to be that they show nothing out of the ordinary at all.

Books to guide and encourage grownups

Imagine you’re a clueless new parent coming to terms with the realization that your child may have developmental problems. Imagine further the loneliness you may feel after consulting professionals who aren’t prepared to do much to remedy those problems: The child’s future is entirely in your hands. His needs may be urgent, but they’re a mystery, even to the experts. What do you know? This was the point at which Judy and I began trying to educate ourselves in hopes of improving things on our own. There are scenes in the print and (hopefully upcoming) film versions of What About the Boy? that show how our thwarted energy found direction when we discovered a new book—and there were far more such books than I wrote about. First there was a maverick provider’s manifesto with the promise that better answers were available. Then there were parents like us telling how those answers worked for them. Later, there were other providers with other ideas, and other parents–and even one or two recovered patients—weighing in on how it all shook out for them. We cherished these stories because they filled a void, albeit imperfectly. Years later, WATB became my contribution to the literature.

Daily scorecard

When we started a neurological stimulation program for Joseph, based on directions given by an organization back East (the Institutes), we had an assignment to perform various tasks with him throughout the day. That assignment changed, and generally became more complicated and demanding, each time we returned for a reevaluation. I made checkoff sheets for each day, to help us stay on track, and this is an example. It looks like some of the items on this day’s list weren’t accomplished, which is not surprising. It was a rare day indeed on which we met every goal. At this particular point in Joseph’s trajectory, the top priority was to get him walking. This was probably a “marathon” day for walks back and forth under his overhead ladder (OHL), and apparently he slightly surpassed that target (at the expense of meeting others).

Reflex mask (aka “kiddie space mask”)

Little kids and plastic bags do not mix. That’s a given. But this is one example of various specially designed masks that were provided by the Institutes to parents of developmentally disabled kids. According to the Institutes (and some organizations they dismissed as imitators), the crux of each kid’s problem was inadequate breathing. Fix the breathing and within a matter of months the kid too might be fixed. Accordingly, while on program with the Institutes, we lived with a continuously-running seven-minute timer. When it beeped, we popped a mask such as this over our son’s mouth and nose for a one-minute duration. During that minute, the air he breathed had to be drawn in through that little straw in the end. He responded by breathing more deeply. (I still remember the surprise I felt at seeing an immobile kid puffing as if he’d just finished a sprint. Of course, getting to the point of actually being able to sprint would be better, and was one of the long-range program objectives.) Also, because he also inhaled a greater concentration of carbon dioxide while wearing the mask, changes occurred in his body that increased the blood flow to his brain. We saw reasons to believe that masking helped Joseph on a physiological level. Naturally, this paragraph does not constitute medical advice and is not intended as such.

Homemade intelligence materials

“I just wish it were as easy to make a paralyzed kid walk as it is to make a brain-injured kid bright.” So said Glenn Doman when encouraging families on the program to go home and work hard to teach their kids about the world. Many reasons were given for doing this. Learning to read, learning to do mental math, learning about related subjects (breeds of dogs, flags of countries, famous people, or in this example WWII airplanes)–these activities would be fun, for parent and kid alike. Success would be easily achieved, and would therefore motivate efforts in other endeavors. And, yes, along the way the kid would become a lot smarter. We made all these materials in our spare time (ha ha; that means times when normal people were sleeping), and I hope it’s evident from this that we shot for maximum quality. There were moments when Joseph rewarded our efforts. But usually he was not much given to providing feedback.

The corner bar (not what it sounds like)

WATB includes a photo of Joseph walking beneath his overhead ladder. What we see here was a precursor to that. (I called it “Joe’s Bar.”) The first objective was to get him to grip an overhead dowel in order to stand up straight, and you can see the poor guy looks a little fearful at this point. Later, he learned to reach from one dowel to another, walking as he did so. And finally, at long last, he walked out from under the contraption with no assistance. We had him walking back and forth under the ladder for more than a year, but finally (at 39 months of age) Joseph became an independent walker. It was his clearest and most dramatic victory, and he was quite obviously proud of himself.

Travel docs

In Joseph’s early years our family did not take vacations. However, we traveled quite a lot. We flew from our home in San Diego to the Institutes in Philadelphia nine times over a period of four years. We made innumerable day-trips to clinics in places like LA and Phoenix. And after moving on from the Institutes’ program, we ventured abroad, always hoping to find someone who knew more than the last resource. It’s easy to look back at all that chasing about and see desperation, but everything we did made perfect sense (to us) at the time. In the process, I very slowly learned the importance of weighing the objective likelihood of success against the cost. Consequently, it’s been easier to pass up more recent opportunities to do the same thing. On the other hand, I’m still glad to have had the opportunity to try everything, and find out for myself that it didn’t work. (Say, Edison said something along those lines.)

Articles of faith

The campaign to help our son was always an uphill struggle, but we experienced exciting victories along the way, and spotted little clues suggesting that still greater breakthroughs could be within reach. So we always believed success was possible. We also believed beyond any shadow of a doubt that success, i.e., total wellness, was his birthright. The challenge was simply finding the best path for attaining it. When our own efforts proved insufficient, we gradually began to think we needed a more spiritual approach. We were very ignorant of such matters, but highly motivated to learn. Accordingly, we started out in a quasi-New Age church that was very much into something called affirmations, i.e., calling things that be not as though they are, with the intent of summoning them into being. Growing dissatisfied with that, we found a movement that seemed more Bible-based and therefore hopefully closer to the source. (For example, the four steps suggested in the image to the left are derived from Mark 5:25-34.) Because of this endeavor, Joseph spent a fair amount of time when he was five and six years old in huge religious conventions and healing services. And his mom and I subsequently spent time coming to terms with the fact that we were either abject failures at this or else were still getting bad instruction. Still, hope is a wonderful thing, and we found some here.

School paperwork

Before becoming a parent, Judy worked in special education. Perhaps for that reason, she knew, very early on, that she did not want educators involved in the decisions to be made regarding our little guy. A couple ladies from the school system came to the house to assess his condition and recommend some sort of special-ed preschool placement. She was not interested. She felt sure they offered nothing that would improve Joseph’s abilities. And so we carried on without any such help until he was seven years old. The time came, however, when he did have to enter the system. That’s when I began learning about what we’d been missing. Over the next several years I accumulated boxes full of IEP reports and correspondence such as the letter shown to the left. (Click the image if you want read the first page, but I’m pointing out that once again the school is not following through with the actions they had agreed in writing to do. In this case, the issue was providing a device that might help Joseph communicate. It’s the identical problem dramatized in Robert Rummel-Hudson’s fine memoir, Schuyler’s Monster.) I hate to look in those boxes. Educators who read this will surely be indignant, but all this documentation bespeaks a staggering waste of public resources and human life.

Bumble ball

No recap of objects in Joseph’s early years would be complete without at least a nod to those he personally appreciated. He had no shortage of toys, including myriad stuffed animals that well-wishers gave him (alas, he never connected with such things) and so-called educational toys of one sort or another (again, little interest). Thinking back over those days, I believe the one thing he most enjoyed may have been this ball that vibrated and randomly bounced all over the place. Turning it on guaranteed a radiant smile from our little guy, which meant a lot to us adults. (This image comes from Amazon, where apparently it’s now more successful as a toy for pets. Parent reviewers complain about the quality. Maybe this isn’t exactly the same product, but something very similar was a big hit in our house.) All choices Judy and I made were motivated by the desire to maximize his options in life, and yet in the end it all boils down to being happy. Helping a child to be happy is good.

Are you ready for healing?

Ridiculous question, right?

Everybody in need of healing is ready for it. At least it seems that way on the surface (Many years had to go by before I was able to add this sentence).

Throughout the campaign to restore my son to his birthright, the high points of which are dramatized in WATB, I felt utterly–almost violently–impatient with any suggestion that:

  • His healing ought not be the first order of business
  • Our efforts to bring about his healing could be misguided
  • Healing was perhaps not God’s will

The apparent odds against succeeding were almost not a consideration. I understood that important goals required effort, persistence, sacrifice, positive thinking–and all that was OK! I wanted to do all that, so we could eventually accomplish the thing our family so desperately needed.

I think now that, if we had achieved complete success, it might have affected me in a bad way. Evidence that I’d been right with regard to the above points could have made me insufferable. Inflexible. Incapable of ever learning again. Never mind the fact that any effect on me would not compare to whatever wellness might have meant to my son. I still cannot see how he is better off without having attained wellness. Growing up as a well kid would have been a good thing for him.

Anyway, without that evidence, I felt confused and humbled. The years that followed have involved a fair amount of soul-searching. I’ve tried to be open to words of wisdom from various sources, but most often the input meant nothing. About a year ago, something triggered a little epiphany, a new way of understanding a word of advice that had been offered near the end of WATB. Today, I heard something that built upon it.

If you have wrestled for a long time with an unresolved problem like this, and are prepared to listen to a message that might not reinforce your own most strongly held opinions, I invite you to click here. As mentioned above, for a long time I was unwilling to hear different ideas. That kind of stubbornness did my family no good.

I’d like to know what you think.

Thoughts prompted by a pioneer on getting from here to there

Joyce quote

Henry Ford, the entrepreneur who showed a younger world how to get things done in a big way, has been credited with this gem of wisdom: “If you think you can do a thing or think you can’t do a thing, you’re right.”

I was reminded of that today when writing a short remembrance of another pioneer, Ray Bradbury. The story in WATB, and my ongoing ruminations about what it means, amount to an exploration of the limits of what we can do.

Here are more nuggets from Mr. Ford, and my current thoughts on their application:

“Time and money spent in helping men to do more for themselves is far better than mere giving.”

To me, this is a variation on what Glenn Doman said back in 1986: that the right objective for Joseph was that he be “an answer to the world’s problems, rather than another of its problems.” I understand that some disability and diversity advocates see things a little differently. My short answer to them is that it boils down to having options. Someone who has the choice of affecting the world around him is better off than someone who depends on that world for everything that happens. Assuming he makes wise choices, other people are better off as well.

self-sufficiency

“I cannot discover that anyone knows enough to say definitely what is and what is not possible.”

When Joseph was one year old, his doctors transitioned from telling us to be patient and hope for the best into telling us to get counseling, so that we could cope with the fact that nothing could be done for him. At least, they proposed doing nothing for him, and they warned us to stay away from any alternative providers who might have a different take on the situation.

Those doctors lost all credibility in our eyes when alternative providers did in fact help him.

Did the alternatives have all the answers we needed? No. Were they as smart as they seemed to think they were? Alas, they were not. This was doubly disturbing, since they claimed as adamantly as had the original doctors that no answers existed outside their own specific realm. Again, we were advised not to look elsewhere.

If we had been less motivated and more convinced that we were getting the complete picture, we might have reacted differently. But when you have a problem that you feel absolutely must be solved, and the known resources for solving it no longer inspire confidence, something happens in your head. At least, something happened in our family. We set out on a quest for answers with no guidance beyond what felt right.

Were we smart enough to do that? Probably not. But we didn’t want to give up without establishing for ourselves the potential of every plausible course of action. I cannot regret our choices.

possible

“There is joy in work. There is no happiness except in the realization that we have accomplished something.”

When I’m asked to talk about WATB, a point I always try to make is that, despite having a child with profound developmental problems, and despite being busier than we’d ever been in our lives, Judy and I spent a great deal of the time feeling extremely happy. Optimism reigned in our household. Volunteers who came to see us felt energized, and no doubt that was the reason many of them kept coming. We believed fervently in the rightness of what we were doing. We saw evidence in our son that reinforced that belief. Those days were an extraordinarily upbeat time in our family’s life, and I look back on them with wonder.

accomplishment

“Thinking is the hardest work there is, which is probably the reason why so few engage in it.”

It isn’t easy to think clearly when in the thick of battle. Also, one’s thinking is only as good as one’s knowledge, and throughout the story I tell knowledge was never in great supply. We started off with basic instincts and notions of right and wrong, and that arsenal was what informed a lot of the decisions made along the way.

But the writer writes to teach himself, and a lot of my deeper thinking on the subject of our campaign took place as I was putting my book together. So far, this thinking hasn’t particularly benefitted Joseph. It has, however, enabled me to bring new understanding to his extraordinary childhood and current status. Further revelations continue to take shape as I blog about the story. This is not a linear process. Time passes with no new insights. But then something clicks and my understanding acquires new depth.

This latter phase was optional. The story could have ended without my ever having digested or told it. I have benefitted personally from going back over it. My hope is that readers following the thinking that it dramatizes will see things anew in their own lives as well.

“Failure is only the opportunity to begin again, this time more intelligently.”

From a practical standpoint, the first motorized quadicycle Henry Ford built wasn’t much of a vehicle. The first car company he put together didn’t exactly work out for him, either. The same can be said for the first several attempts Judy and I made to help Joseph. We took our son to doctors and therapists who, quite frankly, had other priorities that prevented them from giving his case the kind of attention it needed. We saw other providers whose frame of reference was too narrow, if not altogether wrong.

Every time a resource disappointed us, we looked for another. We looked to ourselves, as well, because early on it became obvious that nothing was going to happen that did not involve major effort on our part.

Several milestones and several plateaus later, to use automotive metaphors, we ran out of gas. We reached the end of the road. If further progress for Joseph is yet possible, the route it will take has not yet been surveyed.

However, my pledge to my son, alluded to in the book’s subtitle, is that I remain poised to resume the effort when a new course of action looks promising. I will do so armed with everything learned along the way. The result might yet be an answer to the world’s problems.

When doctors get it wrong

In part, WATB concerns the experience of begging our son’s doctors for help with a major problem, discovering that those experts had no idea of how to treat the problem or even much curiosity about it, and then looking elsewhere for answers.

The book includes a scene in which a newspaper reporter is interviewing me about the unconventional treatment my wife and I selected. He has already checked with a local pediatric neurologist, who informed him that we are wasting our time. Therefore, his line of questioning is confrontational. Why do we insist on ignoring professional advice? I point out that the professional advice had been to do nothing and accept our son’s undiagnosed condition as a fact of life, whereas the alternative approach we have taken is already bringing about wonderful improvements in his abilities. This claim means nothing to the journalist. Who am I, a nonprofessional, to say that my son is better or that it is due to this crackpot intervention?

Afterwards, Judy and I felt foolish for having let the guy draw us into an argument. We didn’t need to defend our choice. We only needed help for our son. At that point, anyone claiming superiority to the resource we were using would have to show us something better than mere credentials.

Still, over time we had more discussions like that, with nurses, relatives, even casual acquaintances. Their challenges had the effect of backing us into a corner. Nobody was going to make us give up this program! Even when the passage of time did not offer much assurance that the program would accomplish everything we’d hoped for.

When we did reluctantly give it up, we continued to believe another unconventional solution would pick up where the first had left off. We would discover what to do via the same determination and common sense that had gotten us to that point. We did occasionally check in with mainstream doctors, but our alienation from them was almost complete.

A better outcome should have been possible. The following thoughts are addressed primarily to professionals. I hope there is someone out there in a position to learn from our story and from this list of conclusions:

Healthcare is a partnership.
Much is written about the necessity for patients to communicate with their doctors, but in my family’s experience, it was the docs who went silent. In doing so, they didn’t advance the partnership. Instead, they removed themselves from it.

Where WERE you guys? Maybe our expectations were not entirely realistic, but we were correct in looking for more support and guidance than you offered.

I think you had other priorities. Maybe you couldn’t spend the time necessary to understand our son because you needed to clear out that waiting room. Yes, you ordered some tests; the results were either negative or inconclusive. Did the absence of a diagnosis and treatment protocol excuse you from thinking about the case more creatively? Sometimes you claimed to be hopeful that things might spontaneously improve. Maybe each of you really hoped we would continue taking our problem to somebody else. All the explanations I can think of amount to lame excuses.

It’s not about your career or professional reputation.
We all have a tendency to take ourselves too seriously. I think what we do is more important than who we are. Doctors, if helping your patients is not the first priority, I would appreciate a little enlightenment on what ranks higher.

When we were looking desperately for a way to help our son, one pediatrician mentioned cryptically that “there are programs out there for children like yours, but I’m not going to say anything about them.” Presumably, she feared censure for pointing us toward an intervention that was not endorsed by her peers. Somewhat later, when he first heard our description of what we were doing for our son, the family GP said he knew nothing about it but concluded, “If it’s working, go for it!” Later, notified that our program was frowned upon by the American Academy of Pediatrics, he changed his tune. But he never gave it any serious thought, never saw the need to learn enough to take a real stand, even though our son was his patient.

Don’t overestimate your own level of smarts.
One of the first potential treatments we learned about on our own was a medication called Piracetam, which reputedly enhanced the supply of oxygen to neural cells and possibly supported language acquisition. It was not available from pharmacies here in San Diego but could be bought over the counter in Mexico, which wasn’t far away. We mentioned it to our son’s neurologist, thinking he’d be up to speed on the subject. “Never heard of the stuff,” he said proudly. End of subject. Clearly, anything he’d not heard of was not worth hearing about. This despite the fact that Piracetam had been the subject of a recent study at the local children’s hospital. We’d already read the study. My wife had phoned one of the researchers involved.

The doctor’s confidence that he knew everything worth knowing would have impressed us more if he was offering a reasonable alternative. So do you think we visited a Mexican farmacía and began medicating Joseph ourselves? You’d better.

Bad-mouthing your competition is unbecoming.
I’ve found this habit particularly noticeable among altie providers, those selling off-label hyperbaric oxygen, auditory therapy, fetal cell therapy, etc. When we browsed among them, we repeatedly found practitioners haunted by jealousy of competing clinics. They spoke resentfully of people who had stolen their ideas or who made claims that only they themselves had the right to make. They gave the impression of not having the resolution of our son’s problems as a high priority.

 
All these errors on the part of healthcare professionals have the effect of making patients feel very much alone. In a sense, feeling alone is getting a glimpse into reality. Help from one human to another can go only so far. But I think patients have the right to expect a good college try at providing that help first.

Now as the patient, or rather the father of the patient, I too screwed up. Deprived of the benefit of your expertise, I had to rely only on my own reasoning and my own sense of what felt right. But my mistakes were the result of ignorance. Yours amount to abdication.