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

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

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

We try. All of us.

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

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

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

Finding Joy in Treble Clef

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

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

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

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

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

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

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

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

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

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

When something important in life goes wrong, it colors our reaction to later experiences.

For example, back in the late 90s I owned a bunch of stock options that had been granted by my employer. One day, to everyone’s surprise and delight, the price of that stock began a very steep and seemingly endless climb into the stratosphere. Within a few months it had made me a millionaire (on paper). But then, just as unexpectedly, the bottom fell out. By the time I understood that this wasn’t just a temporary dip, it was too late.

Therefore, a few years later when home prices in my city began emulating that stock, I resolved not to make the same mistake twice. My wife and I sold our house at the peak. Smart move? Well—maybe. The two situations weren’t entirely comparable, because we still had to reside somewhere, and I’ve never been comfortable with my living situation since then. But selling was an effort to stay in control—to be a participant at least in unfolding events, to hold onto value even at the cost of giving up something else.

I’m telling that story simply to illustrate the effect past disappointment can have on future decision making: Once bitten, twice shy. Pain avoidance motivates the most basic kind of learning.

And there is pain, and loss, to be experienced in life, often with consequences far more dire than a mere financial setback. We don’t like to think about it, but each of us is vulnerable to drastic upheavals. Look at your own life or look at the headlines over the last month. Bad stuff goes down, and no one seems able to foresee or prevent it.

The experts in whom we like to put our trust typically appear to be as surprised and helpless as anyone else.

Naturally, each of us wants to minimize pain and improve life. But in trying to control outcomes, we tend to have imperfect results (as happened when I sold the house). And here’s the idea I’m struggling to express: In view of the fragility of peace and comfort, maybe we need to revisit our priorities. Perhaps we ought to try first of all to remember and appreciate the good in what we now have—as opposed to taking that for granted while grasping for something else.

Another personal story may illustrate this. Prior to my family’s misadventures in the dot-com and housing bubbles, we had a baby with acute problems that profoundly affected his development. Something bad—nobody knew just what—had happened to him prior to and/or during birth. My memoir is the story of our uphill struggle to make things right again. Or at least to make things less bad. Typically, anything lost (health, trust, etc.) is very difficult to restore fully. Even a partial restoration is no sure thing. But we knew the cause was worthy. And the campaign we launched on Joseph’s behalf led, for a time, into some of the most intense and stimulating and even exhilarating living I have ever known. But as he progressed along the pathway toward a condition that we viewed as his birthright (wellness), the going became more difficult, for all of us, and the impact on Judy and me became impossible to ignore. There came a point beyond which it made no sense to continue sacrificing assets we had in pursuit of something we might never achieve.

There may be differences of opinion as to just where that point was—but we crossed it. At speed.

I believe Judy’s death was one consequence.

Even so, despite knowing that we crossed it, and knowing what was lost when we did, I remain susceptible to temptations that could put our family on the same course once again. I must be careful.

Sometimes, having anything good at all seems almost miraculous. I hope this doesn’t sound like a platitude. The mindfulness I’m thinking about involves renewed commitment every day to maintain, yes, even defend, blessings that we will most certainly miss if we no longer have them. Examples of this overlooked maintenance might include:

• Getting exercise and enough sleep, managing stress, eating properly, etc.
• Using seatbelts and generally avoiding needless risks
• Following a budget, eliminating debt, reviewing financial goals
• Participating in and contributing to the community
• Seeking communion with the higher power

By the way, I write in order to understand, so this is addressed to myself as much as to anyone else. But as long as I’m writing it, allow me to wonder whether, in straining for outcomes that aren’t always realistic, we as individuals and we as a society are perhaps throwing away anything now in our possession that might be exceedingly hard to recover.

Yes, of course, aspiring for improvement is natural and good. That’s why I’ve never regretted the effort Judy and Joseph and I made to give him more options in life. This is simply an acknowledgment that common sense still applies.

This TV news segment was filmed outside our house in November 1988. Joseph was 44 months old. Thanks to an intensive home program, he had taken his first independent steps in June of that year.

I mention this interview on page 247 of What About the Boy? I thought it would be good to see again in honor of his upcoming birthday. Click the image to view it.

The next time this story is enacted, it may be in a cinema near you. A screenplay has been written, a producer has said he wants to take on the project, and the next step is financing. To see the producer’s synopsis, click here and then click the image of the book cover. The project is mentioned on page 2 of a press release you can read here.

If you have not yet read WATB, please click over to Amazon from the link on this page and begin getting acquainted with Joseph. He may surprise you.

Please don’t misunderstand. I’ve always thought the space program was a great thing. I watched TV coverage of America’s first manned space launch with my fourth-grade class, saw the Moon landing with high school friends, and as an adult worked many years supporting unmanned launches from Cape Canaveral. Over time, this effort has resulted in dramatic changes in the way we all live that are now taken for granted (e.g., satellite TV). It has often prompted a shared sense of pride and community. And the demonstration of sheer brainpower is impressive for its own sake.

But here’s a question that has bothered me for years.

Since we, as a society, can do what is depicted in this astonishing video (please do click the image and watch it), and since similar massive efforts are also deemed necessary to understand the causes of anomalies and mishaps such as airplane crashes…

Is it unreasonable to expect the same level of smarts to be deployed, with the same sustained focus, in the cause of improving our response to developmental disability?

When my son Joseph was born in 1985, I naively but naturally expected to see that happen. Then, as his mom and I began pursuing leads in hopes of finding the answers he needed, I realized how very many other families were grappling with the same problem. Generally, they did so with no help from the acknowledged experts.

Important work is being done, here and there. I know a highly motivated researcher at George Washington University, who tells me much of her time is spent trying to secure funding for continued work. Last year I wrote about attending the very stimulating “Frontiers in Neural Disorders” conference in San Diego. The speakers had interesting things to say, but I perceived no sense of urgency. Occasionally an upbeat report appears in the news. But actual breakthroughs–the sort of thing that would give people like Joseph additional options in life–appear to be generations away.

We as a society all suffer as a result. Just saying.

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.

Several weeks ago, I learned about a little book that is the product of a collaboration between a developmentally disabled teenager and his mother. He contributed several arresting illustrations, and she added written context. I ordered a copy and suggest that you consider doing so as well.

This book provides touching insight into the perspective of Wolf, the young man, as interpreted by the person who comes closest to understanding him. She explains that the things we find important do not register with her son. For example, he has no interest in the authority, social status, or mood of another person, or in passing the time with “small talk.” Instead, he cares about animals, Bigfoot, ghosts, life on other planets, and meteor showers, or as he puts it, “realistic things.”

While I think anyone would welcome the opportunity to consider another perspective, this particularly fascinates me because I’ve spent so many years wondering how my own son, Joseph, sees the world. Unfortunately, in our case we don’t have the avenues of artwork or verbal language. If I know what’s going on in Joseph’s head, it’s only because of clues like his facial expression. He can convey a lot that way, but a very big gap remains for a dad who relies on words as heavily as I do. The situation feels somewhat like the one in the movie Mr. Holland’s Opus, in which the music-loving father must come to terms with the fact that his son is deaf.

For a while, Wolf was drawing disturbing images because, he said, he needed to get it out of his head. His mom connected that preoccupation with the influence of “reality bullies” who believed he needed to spend his time in school. He had concluded by that point that school was a place where “I felt sick in my body and sick in my head.” She advocated for him, as of course a parent must, and won his release. After that, “his artwork was no longer plagued by disasters.”

“The older Wolf got,” the mother tells us, “the more pressure the world put on him to normalize … and it just wasn’t happening.”

I know all too well the feeling of having something not happen. I hesitate to use the word “pressure,” because it sounds so negative. I continue to think that trying to help a child “normalize” is a fundamentally good thing. Nevertheless, in so many cases we make our best efforts (granted, with mistakes along the way). We put our trust in those whom we believe merit that trust. We couple our efforts with theirs. And, as another parent of a disabled kid puts it, that pursuit turns into “a fool’s errand.” It can make the parents crazy with frustration, let alone the child.

How do things end up going so wrong?

I do maintain that something is going wrong here. There is no question that, from any objective measure, including degree of control over his own circumstances, Joseph’s quality of life leaves a lot to be desired. And Wolf’s mom says up front that he “deals with chronic discomfort and confusion” that are due to his condition. It’s entirely reasonable for anyone to want to relieve a child of such problems. These are problems.

What are we to make of this? It’s the question I’ve had the most trouble with, over the years, and the one that other people seem to have the hardest time answering as well. All I can say is that a problem that cannot be resolved to our satisfaction is a problem we must make the best of. We must live with it, and we owe it to ourselves and to everyone around us to make life as good as it can be.

Wolf the Artist provides a fine example of a family doing just that. Please check it out.

I took a day this past weekend to sit in on a conference entitled “Frontiers in Neural Disorders,” which brought together some researchers I’ve known about for many years.

I took notes, as I always do in situations like that. (I really think I missed my calling in life, because my interest in this sort of thing goes well beyond any hope of its being of practical benefit to anyone I know.)

I could report here about the general thrust of what was said about autism, schizophrenia, Alzheimer’s, bipolar disorder, ALS, etc. (if you’re curious, let me know and I’ll be glad to send my notes.) At the moment, however, I’m thinking about a short conversation I had there with Alan Lincoln, one of the presenters. I reintroduced myself and said I went to see him several years ago on Joseph’s behalf. Dr. Lincoln is a clinical psychologist with a special interest in autism, and probably at the time (early 90s?) I was hoping for an entrée into the world of behavior mod as had been introduced by his colleague Ivar Lovaas. I remember at that previous meeting he seemed to write down every word I said, and subsequently he turned us over to a younger therapist. (That experience was interesting, but I think our family was too far along — i.e., too worn down and with a son already too old — to benefit from it.)

Dr. Lincoln claimed to remember my name, and naturally he asked about Joseph’s current status. I speculated that Joseph had decided somewhere along the way that he was done with making extraordinary efforts to overcome his disability. This perception did not surprise Dr. Lincoln at all. He commented that no one wants to work at full throttle all the time. As soon as the structure of a daily program is removed (if not before), patients like Joseph often revert to what they find most comfortable. What results may not be our own idea of a good quality of life, but to some extent it may reflect a choice they have made.

It’s interesting that my wife, on that same day, went to a different presentation, to learn about enhancing our daughter’s academic success. And one of the points she brought home from that was that even whiz kids can reach a dead end when they get out from under the influence of constantly hovering parents — if they lack inner motivation. The primary challenge for the parents, then, is to bake in that motivation.

There seems to be a parallel. Of course, we all have a point beyond which we cannot go. Free will plays a part, too. Parents want both success and happiness for their kids. We can argue the objective merits of our idea of success, and insist that our kids share that idea. At least sometimes, parents know best. But sometimes, for one reason or another, the kids are going to take a different path.

And we’ve got to find a way to be at peace with that.

The host of this show, which is nominally for an older audience, asked for thoughts that might be useful to grandparents of a disabled child. My basic response to that was:

“Emotional support is golden. Anything you can do that’s constructive is probably going to be welcomed. For grandparents, my advice would be: Please do not suggest that you think this is anybody’s fault. For example, if your son is the father of the child who has problems, please don’t hint that, well you know, the mother’s family is kind of strange, so probably it’s something from that side, or vice-versa. That kind of thing is not going to help anybody. The idea is to help both of them cope, and then to offer whatever additional assistance you think you can.”

Unfortunately, the audio file is too large to post here. However, you can Click here to read the transcript.