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.

Please help a disabled boy observe his birthday

TianzeIn the past, this blog has featured poetry by a very special boy named Tianze. Several years ago, Tianze’s family moved from China to the UK. They adapted to a new life in the West while simultaneously coming to terms with the realization that their son was autistic.

By all accounts, he is a talented lad, a pianist as well as a poet, and very sensitive. I’ve never met him in person, but have maintained a lively correspondence with his mother, Nina, since he was very little and have followed his progress all that time.

Tianze was considered high-functioning and in school was mainstreamed with other kids. Beginning at age 11, he began feeling extreme anxiety, which he sought to relieve through repetitive behaviors. His condition worsened over time and he was transitioned to a special-ed setting. By age 15 his behavior had become destructive.

Various drugs were deployed, providing little or no lasting help and sometimes causing undesirable side effects. Tianze continued to experience unbearable mood swings, from anger to sadness, and his behaviors seemed to be an effort to achieve release.

When we hear of such problems, we want to do something. In the past I’ve put Nina in contact with specialists who I hoped would be able to advise her. And I have reported to her any leads I found regarding possibly understanding and actually treating the problem. (For example, I read somewhere that teenagers have a higher demand for folate, which is a basic building block to all neurotransmitters, which in turn may affect thinking and moods. Conceivably, for someone already fragile, such a deficiency might create the condition suffered by this young man.) (I mention that just as an example of the many seemingly plausible ideas that one comes across. This likely is not the answer for him. But one cannot accept the notion that an answer doesn’t exist.)

In looking for help for her son, Nina never thought she would lose the right to live with him or even to make decisions on his behalf. But that’s what happened.

In early 2014, after two years of challenging behavior, he was admitted to a clinic for a few weeks of observation. Then, unexpectedly, his stay there was extended indefinitely. He has been moved a few times to different facilities since then but has never been allowed to return home, even for visits, despite desperately wanting to go home. Worse, he is not being treated. He is being warehoused.

Occasionally, the family is allowed to take him outside to a nearby park.

Nina writes, “I just so disappointed about UK’s human rights toward disabled children and families. Sometimes I really wish to move out of UK, however it is not easy now.”

"Tianze only imagines home, imagines freedom, imagines new Straun [the name of a school he attended before being moved into captivity] every Friday home"

“Tianze only imagines home, imagines freedom, imagines new Straun [the name of a school he attended before being moved into captivity] every Friday home”

As I noted when adding my name to an online petition on Tianze’s behalf, “I too have an older son with developmental issues, and during the years in which I have worked to improve his options in life I have met numerous motivated families such as Tianze’s parents. I know for a fact that any such family willing to provide care for their child will do a better job than anyone else, and the child in question will also be happier.”

For me, the underlying problem here recapitulates very familiar efforts sustained over a great many years that were motivated by the desire to help my own son. Intrusive government agencies never gained much of a toehold in our case, thank God, but I know all too well the endless search for specialists, the independent pursuit of answers, and the intractability of the problem. Not being able to solve that problem is of course behind the more acute problem in which he is taken away from his family.

But again, we’re still left with the need to do something.

Sometimes a simple human touch can mean a great deal. Tianze’s 18th birthday is coming up on November 5. Although he must spend that date incarcerated in the “hospital,” we can try to make the experience a little better for him by sending birthday cards. That is Nina’s request. The address is:

Tianze Ni
95 Barrington Crescent
Middlesbrough, TS3 9HZ

(If possible, try to get attractive stamps for the envelope. Something tells me that might add to his pleasure.)


driving around

Driving around

This lovely Saturday morning, the start of a long-awaited extended weekend, found me out and about on a few unhurried errands in the neighborhood—trips to the shop for an oil change, to the library to replenish the supply of audiobooks (my reaction to the latest one is here, fwiw)—little things that needed tending to prior to heading off to a party later in the day. It’s probably revealing for me to admit that a simple outing like this felt like something to relish.

I almost said this was in the OLD neighborhood, but we do still live here. However, a few months ago I began a new job at a location 50 miles away. Now on week days I’m barreling up the freeway at first light and feeling too bushed in the evenings for more than the occasional good-faith effort to help the little guy with his homework. So I no longer see much of the home turf. But I sure enjoyed this opportunity to cruise around a bit at my own pace.

By chance, I passed the building where I’d worked for many years until a certain unnerving development occurred, about which I wrote earlier. I also passed the headquarters of Illumina, which had been the first potential next employer to catch my eye (before I understood the challenge of getting past that company’s HR firewall).

Then, as I continued making my rounds, without intending to I happened to drive within sight of seven (7) of the many places of employment at which I’d interviewed for work during my epic job search earlier this year.

Local history

Okay, living in one area for any length of time has the effect of gradually imparting history and personal significance to every street corner. Surely this is true for you as well. Wherever I go in the few square miles closest to home, I’m passing sites of various remembered little adventures and misadventures (any of the parks where I used to take my disabled son Joseph, for example, on the timed marathon walks that were part of his therapy; the clinic where his mom got her cancer diagnosis; the house of a great friend who has long since moved away). That’s to be expected. But today it was a little startling to notice in quick succession so many buildings within which I’d recently made all-out efforts to sell myself.


I’ve changed jobs much less often than is the norm, if LinkedIn profiles are any indication. But in previous experience, periods of transition involved the merest handful of interviews. This time the process seemed endless. (One wonders if it ever does or even should end, for anyone still in today’s workforce, but that’s a separate topic.)

At one of these companies, a place where I surely would have been a perfect fit, and expected to be a shoo-in, the process inexplicably went off the rails. When I inquired, the manager said apologetically that a former employee had become available and they’d rehired him, because “better the devil we know, and so forth.” Another employer did offer to hire me, but on terms that amounted to what Don Corleone might’ve called an offer I couldn’t accept. In most cases, I have no idea what happened behind the scenes. I’m pretty sure some advertised openings were never filled by anybody (perhaps because of budget issues or because of ambivalence about the notion of adding an honest-to-gosh writer to the staff (some companies expect engineers or marketing folks to do their writing)). No doubt, in discussing their candidates some hiring managers referred to me as “the old guy,” and made decisions on that basis.

The job I eventually took is far removed from my normal geographical circuit. Hence the commute (and the need for audiobooks), and the sense of returning to former haunts on my day off.

How did I get here?

In his famous poem about roads not taken, Robert Frost assumes that the traveler is the one making choices, deciding (albeit perhaps with misgivings) not to follow one course of action in order to pursue another. Likewise, there are motivational speakers who insist that the path to success involves commitment to a goal and refusal to be deterred by life’s obstacles and distractions.

All that is fine and true, inspiring and empowering, but also sometimes destructive, I think. There is going to be a way forward, and it’s very cool when unfolding reality coincides with plans. But despite our very best intentions that way forward often deviates drastically from the plan. What happens then?

And there’s the claim, which also has merit, that we’re better off letting destiny, or God’s perfect plan, unfold as it will. For example, perhaps there’s a perfectly good reason why finding suitable work at this point in life is so difficult for me: Perhaps the time has come to hang up that green eye shade, call it a day, and open up to the possibility of doing something else.

Green eyeshade


But then I remember Joseph. (Just about all of my posts come round to Joseph sooner or later.) When the best efforts this family could muster did not succeed in overcoming his profound developmental challenges, the only option remaining was to allow destiny to take its course. That course has included wonderful blessings, for the family. For Joseph himself, not so much. No one could honestly maintain that his current state compares favorably with that of any representative nondisabled person.

Some of life’s directions appear to be inexplicably bad.

But beautiful Saturday mornings come along on schedule anyway.



Read Me First

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Our intent in developing the WISH FULFILLER is that it be used only for good. Built-in controls prevent the device from harming another person or overriding another person’s free will (even if you believe the other person may be following an unwise course). Do not attempt to disable this feature. Tampering with factory settings will lead to unpredictable outcomes and will void the product warranty.

Likewise, we believe that you intend to use the WISH FULFILLER for good. Note that humility is important for correct use. Before making alterations in the world, consider that you may not be in a position to know what is good.

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Getting Started

You may enter a maximum of 47 characters, including punctuation and spaces. The WISH FULFILLER does not recognize abbreviations or emoticons.

Strive for clarity of expression. Before using the WISH FULFILLER, take time to ask yourself what you truly want. For example, if you are seeking employment, do you simply want money, or do you want to be contributing something of value to others? Be honest with yourself. Also, be very specific in choosing the words you enter. Avoid ambiguity. Peace on earth would be entirely too vague a command to be accepted by the WISH FULFILLER. Consider that there is peace on the Moon.

CAUTION Avoid using the WISH FULFILLER to achieve short-term gratification. Product testing has shown that such usage results in reduced enjoyment and accelerated generation of new desires. Note also that additional charges apply for excessive data use.

As you contemplate the results of your initial efforts to use the WISH FULFILLER, you will have questions. To learn more about the process of achieving desirable results, consult the user guide.

On Sacrifice


What About the Boy? is a father’s story, but readers can hardly overlook the fact that the main part of the narrative ends abruptly when Joseph loses his mother.

Although my love for my son is constant, deep, and everlasting, it is no substitute for a mother’s love. Occasionally, when I hear the way women talk about their kids, or see a mom fix the stray label sticking out from the back of her child’s collar, I realize once again that the mother-child connection is something unique in nature.

That is a relationship in which one party gives absolutely everything to the other.

Now, it’s very nice when that sacrifice is appreciated. And it’s nice when you can later point to the outcome as proof that the sacrifice was justified. I’m thinking here of a video in which a grateful grown son acknowledges all his mother did to make him the success he is today. (Take a couple minutes to see that if you haven’t.)

By the way, I wish it were possible for me to say thanks to my parents as explicitly as this guy does. Maybe I wasn’t an unusually ungrateful kid; they knew I appreciated them. But now that they’re gone I find myself wanting to say more, or to undo moments when I surely vexed them. In part, my desire to succeed in life is an effort to validate all they did for me.

But regardless of whether mothers are told their sacrifice is honored, and regardless of whether they see evidence that it made a difference, I think the very nature of the relationship may be its own reward.

What kind of society would we have if we did not honor mothers?


What’s the plan?

Bad Plan

A great many years ago, I attended several lectures given by Glenn Doman and his associates, which were meant to provide direction and encouragement to anxious parents of disabled children.

One of Doman’s seemingly profound statements back then (duly recorded in my memoir) was that it’s better to plan to succeed, and then maybe fail, than it is to plan to fail and succeed at that.

Success meant getting your profoundly disabled child to the point of graduating from high school and then going off to college or to whatever lofty goal seemed most attractive.

Failure, on the other hand, was a life surrendered to the disability, possibly spent warehoused in an institution, with no attempt at exploring one’s potential. Doman had utter contempt for any parents who were willing to accept that kind of outcome for their kid. Sure, it might be easier for the family in the short run, but it was a betrayal of the relationship.

The deciding factor between success and failure—at least one of the deciding factors—was possession of a plan. Let’s assume that the goal is within the realm of possibility and that the plan for achieving it is adequate (potentially huge assumptions, I agree, but sometimes you don’t know till you try). You’ve got to have a goal and a plan. Otherwise, there’s no telling where you’ll end up.

Which sounds like the advice we get from all sides: from educators, career coaches, financial planners. Some of us may have heard it so often that the middling results we generally achieve make us feel downright inadequate.

The trouble is that most of us do have goals and plans. And to us they appear reasonable, or at least (as in the case of families who went to Doman for guidance) realizable if combined with enormous sustained effort and sacrifice.

So why, if we at least sort of know what we’re doing, is our world in such a godawful stinking mess?

I’ve been giving this question lots of thought in recent months. I haven’t posted much here during this time. An unexpected crisis has diverted a significant amount of energy into figuring out what the next phase of my career will be. But perhaps that crisis can add some depth to this speculation.

Because things are a mess not only for people growing up with poorly understood developmental disabilities (including, alas, even those touched by Doman’s methodologies). The mess extends, for example, into the corporate world, alongside of which a healthy industry has grown up to ease the transition of a great many highly experienced, loyal, long-time employees, like yours truly, displaced from their jobs by newbies and temp workers “to keep the shareholders happy.” That industry has little to say about the reality that one’s next opportunity could well be a low-paying contract position with no benefits (which, who knows, may exist at the expense of still other laid-off long-timers). (I’m striving not to descend into a rant here, although it may be too late.)

This is the new normal, my transition guides say: In the current scramble for short-term advantage, concepts like loyalty have become applicable “only for family, friends, and pets.”

And maybe not always for them, either. The other day I learned of people in the so-called millennial generation who are in favor of removing the phrase “so long as you both shall live” from the wedding vows and are further saying that marriages should be beta-tested in advance of any real commitment.

Beta-testing a marriage would accomplish the opposite of what is intended. The people involved would be practicing divorce.

So—how does one make a plan, how does one find meaningful direction in this climate? I see no realistic path forward for a life in which relationships of any kind are driven by one party’s expectation of benefit regardless of whether the other party is hurt.

Remember, I embraced Doman’s thinking (still see value in it), so when I err it’s on the side of too much commitment.

I understand that the argument could be made that I erred, or went too far, in trying to give my son options in life.

Even so, am I making too bold a claim in insisting that maintenance of our culture, or even our civilization, depends on having goals that respect the interests of all parties?

Am I making sense here? Of course, the relationship between employers and workers is not the same as that between spouses or between parents and children. But I fear all relationships are endangered, and becoming more so.

Because of poorly chosen goals, and unwise plans.

The audiobook is in the final QC process

What About the Boy?The Audiobook Creation Exchange (ACX) is putting WATB through their quality control process, after which it will be available on Amazon, Audible, and iTunes. Barring any issues in the quality check, that process should take no more than a couple weeks.

I think the narrator, Kevin Arthur Harper, had fun rendering the accents of all the characters in the story. I hadn’t realized how diverse they all were, and how challenging it might be to switch from U.S Southern to an Aussie accent, to a Japanese accent, to …

Click the image above to hear his very brief intro.

UPDATE (2/9/2015): The finished audiobook is now available for download here (see how to get your copy free of charge). It will also show up on Amazon and iTunes in the near future.

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


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 Caine, “Time for you to leave.”

*     *     *


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 prone to slipping 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 …


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


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.


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.