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.

“I didn’t see the writing on the wall, until it was gone”

paint_roller_on_calligraphy

For about a year in my early 20s I lived with a bunch of other young people in an old three-story house very close to the University of Virginia. Everyone there was either a grad student or a recent graduate with at least one foot still back in the ivory tower. Individually, no doubt we all had issues and insecurities, but together we had synergy. Without consciously trying, we created what felt like a magical time and place. The larger sphere around us offered on a regular basis events that ranged from square dances to appearances by visiting authors and scholars, but I could count on finding diversion any time I ventured outdoors or even just downstairs to the common area of the house.

Then, gradually, things became less amusing. Some of my favorite people moved away, and I perceived that the day would come when they’d all be gone. And, like it or not, I too needed to conclude what I’d been doing, move out into the real world and apply myself to whatever it was grownups did.

Good situations like that should be enjoyed and treasured while they last. But they tend to be ephemeral. I recall a well-known ad from that general time frame in which a wine maker promised to “sell no wine before its time.” Conversely, I observed, one also cannot hang on to something past its time. It’s wrong to try. Impermanence is a feature of life, and regardless of the value judgment placed on a given piece of life, this too always passes.

A church bought the rooming house in which my friends and I had been living, and made clear their intention that the place was going to become more respectable. That’s not to say it had been particularly disreputable, you understand, but nevertheless the new owners meant to put their stamp upon it. They began by repainting the walls, obliterating in the process some Chinese graffiti that I’d never been able to read but that contributed, I thought, to the general groovy atmosphere.

The “Kung Fu” television series was popular in those days, and in my head I heard Master Kan kindly saying to young Cain, “Time for you to leave.”

*     *     *

socket_wrench

Decades have passed, and every so often that general scenario recurs, with variations. The moment of change seems to involve backing up a step and getting a renewed grip on that which is most important, before trying again. It feels like working with a socket wrench (albeit one that sometimes slips off the bolt). 

The concluding pages of What About the Boy? mention a stimulating new job into which I was fortunate enough to find my way in mid-career. A downturn in the aerospace industry had just claimed my previous job, cancer had just claimed my wife Judy, and our son Joseph was turning out to be far more seriously afflicted by his disability than we’d ever anticipated. All those declining trajectories had followed roughly parallel courses. My needs at that point may seem modest, but felt like a big order to me: I wanted to know if it were possible for anything at all to work out. Something did. I joined Qualcomm when it was still a fairly small company and played a humble, supporting role in the emergence of CDMA technology and worldwide use of mobile telecommunications. I learned, grew, and had an enormous amount of fun in the process. And thus enabled I could accept the blessings of a second marriage and in due course two more kiddos.

Life had turned around. I mean, it did a one-eighty! I still worried about Joseph, of course, still sought to help him in any way possible, but knew the importance of embracing the blessings I’d been given.

More time has passed, and on the professional side the ground is shifting under my feet again. New people are in charge of the company. You might say that they are painting the walls. I am among 600 employees who have gotten severance notices on this particular swing of the scythe.

Most people who hear of this express sympathy and talk about unfairness. They note (correctly) that what we call security is an illusion. Of course, that should come as news to no one. Similar observations are made every time a company lets people go. But one friend leaped over all the boilerplate and simply offered congratulations! Because security isn’t really secure, no growth occurs in clinging too long to something that has grown comfortable. Transitions provide an opportunity to discover what other treasures life still has in store, and to find new ways of contributing. Now, I do confess to feeling a certain amount of anxiety, because four others in my family are depending on me. It comes in waves, alternating with moments of calm. The calm is based on my conviction that the source of blessings will not run dry. And so, in the back of my mind, a little voice sometimes whispers …

“Liberation”

koinonia One place where good things happened.
What’s the next venue?

Peak Reading Experiences of 2014

The more you read...

This morning Goodreads announced its annual winners for books new in 2014. They say over 3 million votes were cast in the process of choosing these titles. As always, I couldn’t participate. I wanted to. But once again, despite all the reading I do, I hadn’t gotten around even to one of their entries for any of the 20 categories.

And incidentally, I can’t help wondering how many of those 3 million votes reflect opinions of people actually familiar with all the competing titles—you know, as opposed to simply liking the one book or author they knew. I suspect that number is very small, which means the whole exercise is just an excuse, as if one were needed, to talk about books.

Well, this happens every year. And every year, for whatever it’s worth, I respond by sharing a short list of books that I found memorable and worthy of attention. Not all of the following came out in 2014, but many did. They’re not ranked in any particular way, but all contributed to my growth and enjoyment. Click the titles to see more complete write-ups. (Previous year-end lists are here, here, and here.)

Serve in Hell, by Georgia Gunn

I discovered, after reading this novel and posting my review, that I know the author (she was using a penname). One constant that seems to apply with this author, whether writing under her own name or not, is her refusal to participate in the circus of book promotion. Every now and then she generates a piece of high-quality literature and sets it loose to find its own way in the world. The world being what it is, not much happens (not that anything is guaranteed even with aggressive promotion). Mere chance brought the title to my attention. I’m bringing it to yours in case you’d like to try a very original fantasy that raises serious questions about the meaning of honor and hope.

Dreamer, by Daniel Quinn

Over the years Daniel Quinn has acquired some dedicated followers (disciples?), primarily through his more famous works. Although originally published a quarter-century ago, Dreamer was re-released last year, and it still merits attention, especially from readers interested in the nature of consciousness or simply those looking for a wild ride. This novel is definitely a page-turner, filled with suspense, unexpected developments, and compelling characters.

How Evan Broke His Head and Other Secrets, by Garth Stein

This one probably gets the prize for the best-constructed novel I’ve read this year, and possibly the one I found most touching as well. The focus is on a talented but only marginally successful young guitar player named Evan. For years he has been living with a variety of problems, not least of which is the fact that he has epilepsy and has been taught to “hide his horrible secret from the world [so as to] live a life without a sign around his neck that says KICK ME, I’M A CRIPPLE.” There’s a story behind how he acquired that disorder, too. Given the time of year of this post, I’ll add that its benevolent view reminded me somewhat of the classic movie It’s a Wonderful Life.

Big Brother, by Lionel Shriver

I recommended a Shriver novel last year as well. This one, I think, might be easier going in terms of the subject matter and more hopeful mood. Whereas We Need to Talk About Kevin is about looking back at tragedy in hopes of learning or salvaging something of value, Big Brother is about choosing to leap into a difficult situation in hopes of averting tragedy. The chances of success are not good, and even succeeding may come at a pretty high cost. But given the cause, neither of those considerations is reason not to try. Big Brother reminded me very much of the campaign dramatized in my own book.

In the Garden of Beasts: Love, Terror, and an American Family in Hitler’s Berlin, by Erik Larson

I always include nonfiction works in my reading, and this piece of scholarship really brought a piece of history alive for me. In some accounts, past events acquire a feeling of inevitability. We have the historical record of what happened at a given time, in this case Germany of the 1930s, and for us the details may seem as dead as beads on a string. Of course, it was a different matter altogether for people living through those events, whether they were frightened or disposed to look on the sunny side and hope for the best. Working from their diary entries and letters, Erik Larson invites (I think) his readers to imagine themselves in a comparable situation, or perhaps even to see parallels in their own experience.

* * *

This was a good year for reading. Many other titles deserve honorable mention, e.g., Life and Death in Shanghai, Doomsday Book, and even a Michael Crichton novel. Thank God for the opportunity to appreciate books! In conclusion, I hope you’ll pardon my inserting a plug for the upcoming audio version of What About the Boy, which I talk about below. At the moment, 11 chapters have been recorded, and it’s on course for release very soon.

WATB is coming to audio

What About the Boy?

An audio version of What About the Boy? is now in production. I always thought the story needed to be available in that format, and am pleased and grateful to see this coming together.

First, a tip of the hat is due to Lexi Revellian, who writes delightfully original novels (at least, I can enthusiastically vouch for the two I’ve read thus far, Replica and Remix). In August she posted news that the Audiobook Creation Exchange (ACX) had matched her up with a reader/producer for Remix. More recently she announced the project’s completion. (The result is free with a trial membership in Audible.)

Wasting no time, I too established a presence on ACX, where prospective readers could audition.

From our first contact, Kevin Arthur Harper impressed me with his energy and enthusiasm for the project. He did warn that I might find it unsettling to hear my words rendered in another person’s voice, and he was right. To some extent that’s because in his reading it becomes his story. He’s experiencing the emotions and confronting the ideas that WATB seeks to convey. I think that’s fine. Also, he does a wonderful job handling different characters in dialog. My reaction on hearing the first chapter was that he has brought it to life in ways I hadn’t even expected. I hope other listeners will like the result as much as I do.

Click here for a brief sample from the opening pages. The final product will go up on Amazon, audible.com, and iTunes.

By the way, the other options remain for book lovers who prefer Nook, Kindle, or good old-fashioned printed copies.

Clout and lack of clout

exclusion

First a data point: A recent issue of The New Yorker carries a fascinating article about a family whose child has an exceedingly rare genetic disorder. It’s somewhat heart-wrenching (and familiar), as are all stories about kids with developmental problems. These stories always involve anxious parents rushing from one appointment to the next in search of answers.

“As one conjecture after another was proved wrong, the specialists lost interest; many then insisted that the cause of Bertrand’s illness lay in someone else’s area of expertise. ‘There was a lot of finger-pointing,’ Christina said. ‘It was really frustrating for us—our child hot-potatoed back and forth, nothing getting done, nothing being found out, nobody even telling us what the next step should be.’”

The article also is of broader public health interest, since the family’s quest eventually leads them into the painstakingly complex process of exome sequencing—a relatively new way of identifying genes that might be at the root of an individual’s unexplained condition. About two years after turning down that road, they finally got the explanation they’d sought: Their four-year-old suffered from a genetic mutation possibly shared by no one else in the world. And without more cases, “there was virtually no possibility of getting a pharmaceutical company to investigate the disorder, no chance of drug trials, no way even to persuade the FDA to allow Bertrand to try off-label drugs that might be beneficial.”

Here’s where this data point becomes enlightening for the rest of us facing uphill battles. Bear in mind that for several years now this family had been traveling extensively to put their son in front of the most prominent specialists available, in the process spending sums well beyond the reach of many ordinary middle-class families. I’m glad they could. I’m glad too that they had the fortitude to keep going past all the apparent roadblocks—and they kept going at this juncture as well. When told that more patients were needed, Matt, Bertrand’s dad, said, “All right, we’ll get more.” And they did. You see, in addition to benefiting from recent (expensive) advances in genetic sequencing, they also had Matt’s stature as a computer scientist. He wrote an essay describing the problem, posted it on his blog, and watched it go viral within half an hour. Eight days later they’d found two other families grappling with the same problem, and at least seven more showed up over the next year. Joining forces, these people formed a proactive community that has brought serious money to bear on studying their kids’ condition and has even resulted in collaboration among researchers.

Their problem is being taken seriously.

Frankly, that’s not quite the way the story unfolds for families with less clout.

This story calls to mind an older data point involving the family of Catherine Maurice (a pseudonym), who wrote a book about rescuing both of her kids from autism by hiring a specially trained full-time therapist that she flew in from the other side of the country.

And it calls to mind various personal experiences. For example, there was a period of time in the 1990s when parents everywhere (those whose kids might be on the autism spectrum) wanted access to Secretin. It was available only by prescription, and generally only as a treatment for a different medical condition, i.e., applying it to autism was definitely off-label. I was lucky enough to find a physician who would write a prescription for it. But then I couldn’t get the prescription filled. There seemed to be a sudden worldwide shortage. When I finally located a pharmacy that stocked Secretin, they wouldn’t sell it to me. Someone on their staff had an autistic kid and he already had dibs on it all. And much more recently, I’ve sought exome sequencing. Earlier posts this year show the trajectory of that effort.

So what are the rest of us to do, those of us with no unusual influence or resources?

Sure, life will always be unfair. All parents feel some degree of concern for underprivileged kids, even while striving to improve the advantages enjoyed by their own. I could go off on a tangent about the adults who do better in life when they screw up on a royal scale than do schmucks who do everything right, but I’m trying to stay in my lane.

Inequality of opportunity is hardest to abide when it affects kids already afflicted by developmental disability.

In my own family’s story, sheer determination moved us a long way down the road. For example, I did eventually get my hands on some Secretin (and established that it wasn’t the hoped-for magic bullet). But we pretty much ran out of gas a long time ago. Every now and then the motor sputters and kicks so that it seems we’re moving ahead. We may yet learn more, or even do more, to improve Joseph’s prospects in life.

Divya

But what I’ve attempted in recent years has been motivated largely by a desire to empower younger families, to warn them away from unproductive attitudes and avenues and to encourage them to hang on to the dream.

Maybe that’s too abstract to be of tangible benefit. So I would like to conclude with a nod to the work of an exceptional parent I met recently. In raising and advocating for a developmentally disabled daughter, Meena Tadimeti saw an unmet need for identifying local resources. She formed the Modesto Special Parents Network and runs a website where families can access ways of learning how to help their kids. This is precisely the kind of information my family wanted back in our early, pre-Internet days. There is strength in numbers; we grapple with a variety of disorders, but we are many. And I continue to expect the best for everyone who insists on an improved outcome.

Parenting is a gamble

3kids

A journalist recently interviewed random local teenagers to learn a little about their lives and ambitions. The result doesn’t contain any particular surprises. Regarding the future, one gal hasn’t decided yet whether she’ll be a surgeon or a photographer for National Geographic. Another expects to play pro soccer. I like the outlier who acknowledges a possible destiny in which she’ll live “in a super crappy neighborhood and work somewhere like Target.” Regarding current reality and the usual land mines threatening their age group, one smiles and says, “We have the tendency to make bad decisions.” The article goes into some detail on those decisions if you’re curious.

None of that is surprising, as I said. But being the father of a teenager, I ended up checking this against the daughter’s perspective. I mean, HER buddies aren’t dropping acid at school, are they? She pointed out that things are probably a wee bit different for the neighborhood we inhabit and the school she attends.

Let’s hope so. Song Yi’s insistence on moving to this suburb a decade ago was based on the ambition of benefiting from a high-end school district and association with children of overachievers, presumably to compensate for the fact that our own achievements are modest. In other words, it was an investment in the kids. I’ve written about that previously (for the same newspaper).

I do think that, thus far, our daughter has been at least partially sheltered from the worst hazards. Our little guy appears to be in a very good place as well.

So, on days when life feels a bit overwhelming, when all I see is a series of hoops to jump through, offering no reward beyond simple maintenance, I remember to be grateful. The kids are doing well, the younger two at least. That means so much to me. I’ll write more about Joseph next time.

It’s all about the kids now. For most of us, there comes a point in life when more personal longings begin to lose urgency. Instead, we think increasingly about the next generation. I see this occurring in my friends as well as myself, and realize I’ve seen it in older people all the way back.

This is the point at which any value in our accumulation of experiences and life lessons lies in whether it can empower young folks. Sure, given more bandwidth I’d still gladly apply resources to doing something for myself. However, in weighing the potential effects on my own life versus younger lives, the younger lives win out every time.

You might say I’m neglecting my own prospects in order to boost those of the next generation. Even my daughter would call that sad. A friend close enough to speak frankly might call it a denial of the reality of my own needs in favor of a gamble. To that I would say this is my conception of parenting. It is a gamble, every step of the way.

By definition, then, the outcome is uncertain. Peace of mind requires flexibility, sometimes a huge amount of it. Never mind lofty goals like becoming a surgeon, sometimes it’s too much to ask even to be able to have a conversation with your kid, or see him. For me, peace of mind comes in doing what I can.

I hope it’s understood that the goal is not to raise little hothouse orchids. They’re going to have to find their way in the real world. Even in best-case scenarios, assuming I jump through every parenting hoop flawlessly and they dodge all known land mines, they’ll encounter unforeseen trouble soon enough.

But I recall something my dad used to say, when I was little: If I don’t spoil him, who will? The process of getting young people ready for what lies ahead amounts to a nice, long metaphorical hug, maintained for as long as you decently can.

Free Tianze

Tianze

Last year this blog hosted some poetry authored by Tianze, an autistic teenager living in Scotland. I’ve never met him or his parents F2F, but for over ten years have corresponded with his mother Nina. I believe her to be a sweet, caring soul.

Their family is going through some bad times right now.

Developmental disabilities affect kids in various ways. As Tianze has grown older, he has at times been unable to control his emotions and has been destructive.

I guess nobody has an explanation.

But I know it’s not unreasonable to look for explanations.

I subscribe to a daily email list where parents of disabled kids share what they are learning. (In fact, I’ve been getting that kind of info for as long as I’ve had email, going back to the mid-90s.) Before there was email, I got information via other channels, and my memoir shows that answers can indeed sometimes be found.

Currently, a lot of people in those emails happen to be discussing how to deal with symptoms like Tianze’s. It is understood that the cause exists on a cellular/biochemical level. And there’s general agreement that finding the right treatment for any given kid involves trial and error—ranging from diet supplementation (e.g., “people have a higher demand for folate from ages 12 to 20″) all the way up to prescription meds. Whatever the magic combination may be, some people do discover it, and post reports such as, “he’s gone from a holy terror to the sweetest, most consistent boy imaginable.”

I would like to suggest that incarcerating a disabled kid, against his will and his family’s will, is likely to do more harm than good. It strikes me as an ignorant response, even in the context of the ignorance we all share.

Now, I understand the motive of wanting to protect someone from himself, or maybe temporarily offering someone a change of scenery. But for five months Tianze has been kept in a medical facility far from his home. Originally, the stay was only for “assessment.” Somehow, it appears to have become indefinite.

He doesn’t want to be there.

His parents don’t want him there.

Nina recently started an online petition: Bring my autistic son, Tianze, back home to Scotland. I hope you will sign it.

Because what she has written below gives a pretty clear idea of how this hospital stay is working out.

I mention above the role trial and error plays in finding answers. That means if an intervention is clearly not working, there’s no justification for persisting in it.

My son like a lion locked in the cage outbursts suddenly: “It is too long in this ward”

I’m again heartbroken visit today.

When I met Tianze, I saw his hair is too long nearly cover his eyes again. I knew I had lots of chase in last time regarding haircut issue, finally the hospital done it. But now it is too long again. We brought lots of Tianze’s favourite toys to him, especially his black toy dog. He holds it and kisses the dog and feel happy about all the toys we brought to him. I knew he had bad week because of missing home, I checked his arms which are full of bite marks. But before hospital, there are no bite marks on his arms. He can be agitated at home, but he is still a happy boy at home.

When our visiting time carried on about 5-7 minutes, Tianze started outburst suddenly, He looked like a lion locked in a cage and suddenly screamed: “It is too long here in this ward.” Then Tianze just started to bite his arm. He pulled the curtain down. He was pulled away by staff back to his ward immediately. We just had this 5-10 minutes visiting time.

I’m heart broke now. . .
Tianze—My poor boy . . .
Mum knows you need home,
You need Mum’s love,
You need Dad’s love. . .
I need my child back home ASAP.
My son suffering, We are suffering. . .

Tianze—My dear son,
Mum knows you have your rights to go to parks,
like all other children
Mum knows
You have your rights to back home,
Like all other children.
You should have your freedom,
You shouldn’t be locked here such long time,
Drugs can’t solve everything,
You need Mum’s love. . .
You are Mum’s baby forever.

Tianze—My dear Son,
You had relatively calm time in hospital,
You waked up every early morning to
just count how many days left in hospital. . .
You sing back home song daily to mum. . .
But now you may lose hope,
you can’t wait,
What you can do now is just
hurt yourself and hurt yourself. . .

Tianze—My dear son,
Mum is helping you out of hospital now,
please stay calm and calm
Please wait Mum and wait Mum. . .
My son, Mum will let you back home,
That is your home,
that is our happy home. . .
Nobody should deprive it. . .
We live in modern society. . .
We live in a civilized country. . .

Tianze—My dear son,
Mum knew you are autism,
you can’t understand lots. . .
You can’t wait any more
even a normal child will be frustrated if locked in without family love. . .
But please can you wait mum,
Mum will save you from this prison. . .
Mum will try best to save you

Blog Hop!

Juliet O'Callaghan

Every year in December I post an item about the most provocative books read over the prior twelve months. I’m already narrowing down candidates for the next list. As much as possible, I like to highlight authors who are new, independently published, or little-known. But doing that doesn’t address any great writing I might be aware of that’s not yet published. Which happens to be the writing most in need of encouragement.

Almost six years ago now I participated for a while on authonomy, a website where aspiring authors critiqued one another’s work. Most writers there were quite good, and some, I thought, were extraordinary. Those with whom I connected all went on to see their work published, with one exception.

Juliet O’Callaghan had a breathtaking novel about a young woman dying of cancer and a well-meaning husband with conflicting loyalties. In my view, the story was ready for prime time in early 2009. Since then, various gatekeepers have blocked its progress. Juliet continues to rework the material, because it’s very close to her heart. Please read the excerpts she’s sharing online and offer some encouragement.

Juliet has invited me to participate in a blog hop, which as I understand it involves answering the question below and giving a nod to her and other participants, who appear to be very much involved in bringing deserving writers to the world’s attention.

SPECIFICALLY, Katie O’Rourke, author of A Long Thaw

AND Anne Goodwin, who maintains a particularly inviting web presence at Annecdotal

AND Juli Townsend, author of Absent Children

These folks are new to me, but I’m delighted to be learning about them and their works (which may well end up on my December list).

BLOG HOP QUESTION:

Why are you working on the project you are writing now? Why is it important? (to you, or to the world, or…)

Every month or so, when the spirit moves me I dash off a short story or poem, and if reasonably satisfied with the result I upload it to readwave. (That site doesn’t compare with the authonomy I remember in terms of helpful peer reviews, but it’s a convenient place to store work.) In itself, meeting readwave’s word count limitations is a worthy exercise.

However, the big project for me now is providing support for production of the movie version of What About the Boy? A couple weeks ago I met with Joel Franco, the producer who has the screenplay, and we talked about the issues of budget and getting the right actors to commit. Progress to date has been slow, but I have the sense that WATB is moving toward Joel’s front burner. He has asked me to contribute supporting material that he will likely be using in the near future.

This is the third anniversary of WATB’s publication. The writing was cathartic, but the work remains important to me because I think it offers perspective for others fighting uphill battles. As Juliet knows, you just can’t let go of some stories.

And that is my first foray into blog hopping. Hope I got it right!

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?

UPDATE: The false lead mentioned above may not be totally false. More in-depth testing has been offered, for a substantial fee, and I have agreed to bite the bullet and pay for it. How could I not at this point? So, by the middle of 2015 we may finally have an explanation for what happened to Joseph. I understand that the information will be unlikely to add much if anything in terms of how to help him. Still, it might. Something might.

On trying, and on the odds of success

gravitational force

A great many years ago, when I was studying physics as an undergraduate, and also coaxing a girlfriend to come visit for the weekend (honesty compels me to admit that she wasn’t really a girlfriend but rather was a girl I hoped—unreasonably, as it turns out—to win over as a girlfriend), I calculated the approximate gravitational attraction between her body and mine, first with her at her own campus a couple hundred miles away and then at the blessed moment when we would be in close proximity to each other.

Schoolwork compelled me to do such calculations anyway. This exercise was simply an effort to make the practice relevant.

According to my figures, the second value was somewhat greater than the first. That is, the force of attraction between us did increase a bit when we were together, but not so much that you’d notice. I mean the numbers were infinitesimally small.

Calculations really weren’t necessary to arrive at that conclusion. The girl did come to visit, but only I think to confirm that the suspicions she already held about me were correct. Despite rudimentary stirrings of romanticism, I was a tedious geek.

That old misadventure came to mind today, prompted by a silly poem addressed to an insignificant grain of sand (… Is this the life that you had planned? That there’d be jillions just like you? …). It started me thinking about numbers outside normal experience (the size of a grain of sand, the number of such grains in the world, etc.) and from there (inevitably) back toward a subject closer to my heart, the combinational possibilities in mixing and matching genetic information from one generation to the next and specifically how in the blazes my son Joseph ended up with a developmental disability that even now remains unexplained.

When Joseph was a baby, a neurologist told me to accept his condition because, as he put it, “it just happened.” I hated the ease with which a man of science could so easily shrug off a young patient as a victim of random chance, without even attempting to understand, much less treat, the problem. So I rejected what he said. In those days, Judy and I thought it was likely a case of birth trauma—brain injury perhaps due to prolonged labor and vacuum delivery. We were embarking on a years-long home campaign to help him overcome that injury, and of course knowing what we were up against could have affected the choices we made, and our chances of success.

Not that those chances were defined any more accurately than the problem itself. Geeks presume that expressing something in numbers is a way of enhancing control over whether we’ll get the outcome we want, be it a new girlfriend or a healthy child. In this case, however, there was no handy formula for quantifying those odds.

Over time it became apparent that they must have been very long odds–maybe one in whatever number of universes would be required, based on random chance, for this one to turn out as it has. And I might as well confess to having no better grasp of figures like that than anybody else. (I was always impressed with the image of a hundred bottles of beer on the wall.)

But I suspect that really knowing what such numbers mean would result in inaction, and absolute zero chance of success. This is where people’s romantic impulse has value—the thing that prompts us to throw ourselves into impossible causes. After all, some folks do win the lottery. Some families working very hard with a disabled child do achieve life-changing breakthroughs. Heck, even in our abysmal ignorance, Judy and I won victories with Joseph.

And for those who don’t get the prize (we didn’t, certainly not to the extent we wanted), well, there’s comfort in knowing that it’s not such a bad thing to expend yourself on a noble cause.

Still, it can only help to have a good solid grasp of what you’re up against. And that’s why I continue the pursuit, even at this late date. Next up for Joseph is a relatively new test called whole exome sequencing.

And then “someday“…

This blog post also appears in The San Diego Reader.

How to be happy

Apparent coincidences are one of the big mysteries in life. I know our brains are wired to look for patterns and connections where none may exist, and then to apply significance to them. But if we do find significance, might it not be real?

Here’s an example:

This morning, when a friend told me of her plans to resume creative writing after she retires (because life is just too hectic now), I offered a gentle warning. Years ago, my mother used to promise herself and others around her that, come some future date (her next birthday, for example), she would accomplish a certain worthy deed (usually it was a promise to stop smoking). In due course, that date would come and go and we would find that, mysteriously, the goalpost had shifted to another point that was again safely off in the future.

My warning was gentle because I’m as big an offender as anyone. I don’t know how much of this is caused by our inner wiring, as opposed to the kind of culture we live in, but everybody seems to imagine that in the foreseeable future things are going to become more orderly, more fulfilling—that we ourselves will become happier and more successful. This transformation will occur as soon as [fill in the blank].

Then we carry on with the same activities as before. Somehow nothing much changes, but (like my mother) we tweak the parameters as needed so that it appears we’re still on track.

I see a coincidence here because, after parting from my friend I went online, opened my email, and saw a message from the leader of a local writers organization. It began:

Many times I hear writers say, “You know, I think I’ll be happy when…”

The email continued with pretty much the same admonition I had just handed out, focusing on happiness itself as opposed to the other objectives we imagine as being prerequisites to that happiness (getting published or whatever).

As a writer, I would be happy if What About the Boy? went into a second printing, if the screenplay for it went into production. Much more importantly, as a father I would be ecstatic beyond words if some actual remedy were to result from the current renewed push to understand Joseph’s condition—which is the problem underlying creation of both book and screenplay.

My own choices and actions may have no effect on accomplishment of these particular targets. Despite everything I do, they’re still pipe dreams.

But hopefully that doesn’t mean there can be no happiness. And hopefully reaching for happiness while goals remain unattained is not mere denial. I trust that it isn’t.

The above email recommended a certain Muppet video (having to do with “the Snowths”) as a reliable switch to banish unhappy thoughts, and that reminded me of something that has had the same effect on me.

Please click the image below and see if it doesn’t give you a nice warm feeling.

NightGarden