What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category Uncategorized

 
 

Looking for Some Good Books in 2016?

audio on wheels

I always read a lot, but consumed at least twice as many books as usual in 2016. That’s because I spent the year commuting a significant distance every day, and needed to occupy my thoughts with something worthwhile. Audiobooks came to my attention a couple years ago, when Kevin Arthur Harper narrated the audio version of What About the Boy?. If you haven’t heard that, please excuse this rare but shameless plug. (Incidentally, the distributor of the printed version went out of business in 2016, effectively taking the title out of print. Consequently, non-audio options are limited to downloading it to your Kindle or Nook, buying it second-hand, or contacting me for an autographed/inscribed copy.)

Every year about this time I share a few titles that have particularly impressed me, with links back to more complete write-ups on Goodreads. Doing so is my answer to the well-known lists of new titles that everyone is supposed to be reading. Since there were more to choose from this time, these are the best of the best. Perhaps one of the following would be a fit for somebody on your holiday gift list. (Oh, and did I mention autographed copies of WATB?)

Audio

Cutting for Stone, by Abraham Verghese, narrated by Sunil Malhotra
I was unable to make much headway in the printed version of this book when I tried some years ago. There was nothing wrong with anything I saw, but somehow the feeling I picked up from the text was one of joylessness. The audio version, with its extraordinarily good voice actor, changed that, and brought this wonderful story to life. To say Cutting for Stone is a story about practicing medicine in Africa does not begin to suggest its drama and philosophical insight, or the depth of every single character—or to convey any sense of the connection a reader can feel with them as, time and time again they find their world isn’t as “intact” as they’d supposed, that despite their planning and expectations, events are going to take an altogether different path. That has certainly been my own experience of life, which is one reason this story appealed to me so strongly (once the audio version made it more accessible).

Cross Roads, by William Paul Young, narrated by Roger Mueller
Here’s an audiobook with narration that’s just about perfect. The narrator doesn’t overdo the accents (British, Native American, Black). He doesn’t call attention to himself at all. But he has a rare ability to add life and dimension to the story, and especially to deliver emotion like the best of actors, and consequently I enjoyed it much more than would have been possible in print format. The first part of the story closely resembles my memory of Young’s earlier book, The Shack. Some of the early dialog feels tedious—didactic if not preachy. But then the plot becomes more interesting. As the frustrated father of a disabled son, I especially liked Tony’s opportunity to experience the perceptions of a boy with Down Syndrome. I loved everything that followed. I sensed the concept was challenging for the author to sustain, but he introduced enough changes and wrinkles to keep me guessing.

The Testament of Mary, by Colm Toibin, narrated by Meryl Streep
This is a startling, disturbing story. At first I felt vaguely repelled by it, because the aged Mary portrayed here is a reclusive husk of a woman, someone who has endured horrors and learned to distrust the people around her, and has long since abandoned any illusions about the goodness or importance of life. She’s nothing like the serene, trusting mother of Jesus we’ve been given in Scripture and doctrine. But I see no necessity for this story to be about Mary, and that’s the main attraction it has for me. It’s a story about how to interpret the anguish we experience in life. I’ve experienced my share. And I continue to do so. I think faith is supposed to empower one to accept that our suffering is part of God’s greater purpose, and to believe that everything will be made perfect in the end. Having mentioned Job in the second blog post linked to above, I should here acknowledge God’s response to Job’s challenges: Clueless mortals were not around when God set up this universe and therefore have no basis for passing judgment. All we can do is trust. I daresay most believers find this very difficult at times. For the Mary in this story, it’s impossible.

Child 44, by Tom Rob Smith, narrated by Dennis Boutsikaris
I admired this, the first of a trilogy of novels about Soviet agent Leo Demidov, so much that I made a point of finding and reading the sequels in quick succession. On almost every level, this is a fantastic piece of literature. It easily ranks alongside 1984. The structure, the pacing, the characterization, the depicted thought processes of Leo and Raisa—all of this feels like the stuff of a true classic. Twice, turns in the plot took me completely by surprise. Further, it’s the kind of story that desperately needs to be told. At times, this author is a little careless with his grammar. I’m puzzled as to how mistakes like his can occur within a work that otherwise demonstrates such prowess in story-telling. Normally, the editor in me would object more strenuously, but for this book I’m only mentioning it.

Abundance: A Novel of Marie Antoinette, by Sena Jeter Naslund, narrated by Susanna Burney
This captivating historical novel begins with the young Marie Antoinette journeying from Austria to become the bride of the French Dauphin. The good-hearted young lady clearly perceives a world completely incompatible with the future that we know awaits her. And until much too late, she’s unable to grasp the notion that the good days she’s always known could actually end. (Their end is the inevitable product of the times, but it’s probably safe to say that end was hastened, and made much less pleasant, by the actions of her husband’s grandfather, Louis XV.) When she does perceive the direction life is taking, her response—in this rendering at least, and quite possibly in fact—is simply noble. Marie Antoinette has been vilified down through the years, but the character presented here is not a bad person.

Print

The Guernsey Literary and Potato Peel Pie Society, by Mary Ann Shaffer and Annie Barrows
Prior to starting this, I had misgivings about a novel consisting solely of letters and telegrams among various people, and I also worried that having two authors would be a drawback to the quality (it usually is). Oh, and the title seemed too cute. All those doubts were quickly laid to rest. This is a delightful story, and it gets better as it goes along. The missives make me nostalgic for the days when people actually wrote letters, on paper. I always appreciated the occasional letter that included wit and thoughtfulness, and in this story the gems are more than occasional. The anecdote about Oscar Wilde that occurs near the end is just delightful. And the ending itself is truly lovely. That’s the best word for it.

The Heart Does Not Grow Back, by Fred Venturini
I picked up this novel because the premise sounded original. A couple chapters in, I felt thrilled with it, because the depictions of youthful relationships (on the playground and then among teenagers) are so deliciously rendered. Then the subject matter becomes less pleasant as the story veers off on an unexpected tack. Dale, the main character, suffers major injuries—but it turns out he has an unexplained ability to heal quickly, regenerating not only skin and tissue but even lost body parts. When he becomes aware of this special ability, he wants to use it, by becoming a living donor of kidneys, corneas, etc. But does he subject himself to all those difficult surgeries because he’s just a very good person? Because he feels an obligation of some sort? Not necessarily. I thought his wholesale organ donations resembled the impulse some people have to adopt stray dogs and cats, or to try and rescue down-and-out people–the idea being to lift them out of dire circumstances and show them how much better life can be. There is kindness in such an act, of course. But there’s also a balance between personal sacrifice and display of power, a balance that can tip unexpectedly after the process has begun.

Time and Again, by Jack Finney
Simon Morley, a bored graphic artist wasting time in an advertising agency, is plucked from that life to participate in a hush-hush project that involves sending agents into the past. He transitions to the New York City of 1882, with the personal agenda of observing and perhaps learning about a mysterious event that has long puzzled his girlfriend’s family. He ends up making repeated trips back, each time endeavoring not to interfere with events and thereby inadvertently alter the course of history. However, it proves impossible to remain strictly an observer; he does interact with the people there, to a far greater extent than ever envisioned. Then it turns out his government handlers back in the Twentieth Century actually want him to get involved, in hopes of engineering a better modern-day world situation. (I’m attracted to treatments of this idea, having a number of intractable problems of my own at present.)

The Confidence Game: Why We Fall for It … Every Time, by Maria Konnikova
Our civilization has to operate on a general assumption that interactions are supposed to be win-win, not predatory. Nevertheless, con artists are a reality. The Confidence Game describes the phenomenon in a way that is both enlightening (from a psychological standpoint) and empowering. Maria Konnikova tells instructive stories of how con artists wrecked the lives of people who ought to have been smart enough to know better. Maybe intellectually they did know better, but “our emotional reactions are often our first. They are made naturally and instinctively, before we perform any sort of evidence-based evaluation.” There are examples aplenty in my own experience, especially in regard to having a child with mysterious developmental problems, and turning to alternative providers when regular doctors did not help him. Unethical caregivers are not the focus of my book, but a few appear in its pages. And the template they use for reeling in fresh suckers became even clearer as I subsequently blogged about having a disabled adult son. Armed by that experience, I may have been a little quicker to spot scams aimed at new authors who seek public awareness of their books. The author explains that our vulnerability to being conned derives from a trait conducive to personal fulfilment and social cohesion. We should continue to expect our transactions to be mutually beneficial. But we also desperately need self-awareness so our intense desire for a certain outcome does not overwhelm common sense.

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

Don’t Quit!

Several years ago, a Vietnamese acquaintance invited Song Yi and me (and Joseph) to her apartment. I don’t recall what we’d been given to expect, but we were a little surprised to find her living room filled with a dozen or more people sitting cross-legged on the floor and repeatedly chanting an incantation that sounded something like this.

We stayed (the alternative would have been more than rude), and as I spent the next half-hour or more awash in incomprehensible sounds I thought about the intentions of the lady who’d invited us. She’d wanted only to offer what she viewed as a blessing that might change our lives.

Later, a friend explained that this kind of chanting is intended to keep the demons at bay and to bring about happiness. He knew people who had chanted and then experienced good luck and who concluded that there must have been a connection between the two. Maybe more chanting would bring more good luck. Conversely, giving up on the chanting would put everything at risk.

I have no trouble seeing potential for a therapeutic benefit in sounds like this, particularly in terms of reducing agitation and internal chatter. On the other hand, that effect might be achieved simply via music. I don’t mean to tread on anyone’s beliefs, but expecting more than that amounts to what is called magical thinking. Seems to me.

Magical thinking is what leads us to do something that’s imbued with significance in our own mind, and hoping that that improves the odds for something else to come to pass, when there’s no objective reason to draw a connection between the two.

If you think chanting is pretty far out, another scenario might be easier to recognize. How about making an extraordinary sacrifice—spending a lot of money or traveling a great distance or enduring hardship—in the pursuit of some cherished goal? If, for example, the goal is finding help for a child who has major problems, sacrifices like that might be part of what is required. However, the sacrifices themselves aren’t the thing that addresses the problem. Putting the child in front of the right specialist can help (assuming there is a specialist). The other stuff is incidental. Making extreme sacrifices in order to do the wrong thing may impart a feeling that you have accomplished something, when really you have only hurt yourself.

This kind of thinking is attractive when we feel that we have no control over events. It’s natural to want to be in control. But what is the correct response when we aren’t?

This is pretty basic stuff, because all of us know what it’s like when things don’t go the way we want.

I began mulling over this last week, after reading an article (about the Middle East) in which the writer suggested that “there are problems for which solutions might not exist.”

Whether solutions exist or not, it’s absolutely true that there will always be problems for which we have no obvious answers.

So trouble is inevitable. However—and here I should give credit to a wise man named Bob Botsford—misery is optional. What, after all, is the point of being miserable? What is accomplished by it? Yeah, we’ve got issues. We all do. And if we put one behind us, another one will rise up to take its place.

I found that to be the case during our family’s campaign to help our son Joseph. We waged a long, drawn-out battle so he could crawl on his hands and knees, and when that was a done deal we had another battle to get him to where he could walk. And when he took those first steps, we’d barely gotten started.

I began to preceive that some of the remaining challenges at that point did not seem to have solutions.

So, what do you do in that situation? Quit?

Bob has a lot to say on the subject, but I’m going to take some liberties and distill it down to two points:

  • It’s always too soon to quit.
  • There’s no justification for beating yourself up about not having gotten there yet.

My family’s story with Joseph has been doing whatever we could that made sense, and to stop doing things that no longer made sense—while endeavoring not to lose heart. I don’t know how it’s all going to shake out, but what other option is there? Is the following true, or not?

Weeping may endure for a night, but joy comes in the morning.

Psalm 30:5

It's always too soon to quit

Book of the Week

Tracey Alley, an Australian blogger, very kindly offered to make What About the Boy? her book of the week. I contributed a unique post to go with the basic information, and hope you will check it out here.

Another guest post went live today on a blog called TheAdventurousBitch. It includes a photo from when Joseph was a little guy just starting to walk. Please check the right-hand column from time to time, as I hope to be able to continue adding additional links like these.