What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

Archive for the Category kids

 
 

Only Connect!

connect

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

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

josephoct2016

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

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

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

  • Beam me up, Scotty.

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

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

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

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

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

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

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

Threatened by needless complications

tianze1When my son Joseph was very small, his mom Judy and I knew he had some kind of problem. Nobody could say what it was, or what had caused it, and ignorance about the thing confronting us turned out to be another major problem in itself. But we had no doubt whatsoever that we needed to work on his behalf and try to give him some options in life.

Those early years were difficult, but I miss the single-minded focus we enjoyed then, which was reinforced by confidence that our cause was right, optimism that ultimately we would succeed, expectation that Joseph’s circumstances would improve.

That’s just the way things are supposed to work out.

Gradually, the situation became more complicated. My memoir traces that process.

Complicated refers to the intrusion of other pressing issues, on top of the biggie already occupying our thoughts. For us, those issues concerned, first, our finances and then Judy’s health.

But dire though they were, they did not supplant the original crusade. From the perspective I had then—and still, 30 years later, cannot bring myself to renounce—our son’s disability meant a blighted life if it could not be overcome.

I say that knowing many people with various disabilities do enjoy lives that are full and rewarding, and that everyone is hampered by imperfections of one sort or another. Each of us muddles through, regardless. The healthy response is to capitalize on our strengths and find a way of deciding the process and results are acceptable.

But Joseph’s problem could not be compensated for, or papered over. However it might be defined (I still have no useful name for it!), the thing resisted all such efforts. As he grew older, his limitations became ever more painfully obvious.

WATB includes a brief meditation that compares “acceptance” with signing to take delivery of a package, i.e., willingly claiming the unwanted condition. I could not do that.

I could continue to love Joseph, and see to his basic needs. And I could look after myself. I remarried after Judy’s death and started another family (in which I continue to find great happiness, btw), and then very gradually, over a period of years, I conceded defeat in the campaign to rescue my firstborn. Extraordinary efforts had not made the difference for him. I could not justify further efforts, and so I adapted.

This does not mean I am pleased when I consider the life he is living. This week I had occasion to visit the day center where he spends most of his waking hours. Although the staff were busy, some of his peers wandered about aimlessly or appeared totally disconnected from their surroundings. One needed to have his pants changed. Joseph meanwhile was vocalizing loudly, as he occasionally does when dissatisfied about something. So many times I have told him how much better off he’d be if only he found a way to communicate. I am pretty sure he doesn’t like to hear that. Not speaking (or writing, or signing) is part of his disability. Which, again, cannot be changed. I now get that.

Still, it seems reasonable to consider whether some part of these circumstances might be made better. Putting aside the disability itself, can we not make a little headway with related matters, or at least with any of the complications that arise from time to time?

Despite all the difficulties encountered along the way, I have always been thankful for the fact that, throughout Joseph’s life, no one has challenged my right to make decisions regarding the care he receives. I am his parent, and his conservator. Other people are welcome to offer advice. But if, for example, I find a better option than the day center mentioned above, I am free to move him there on my own authority (as I’ve pulled him out of other places in the past). I might make mistakes, and admittedly have made mistakes. But I believe the decision-making should occur as close as possible to the person directly affected. If at some point Joseph became able to decide things for himself, I would be absolutely delighted to let him. Until then, as long as I remain competent, I’ve got the authority.

That is why I am outraged every time I hear of families with disabled children being denied that right. If a kid is able to indicate a preference in a matter such as living at home rather than in a restrictive institution far from his home, and if his family has the same desire, an outsider would need to make a very strong case for standing in their way, even for a little while.

I’m thinking in particular of Tianze, a young fellow who has been mentioned on this blog in the past. For an astonishingly long time now, officious government agencies in the UK have denied Tianze and his parents their basic human right to make decisions concerning their own affairs. They are denying him his freedom, as if he were a criminal, despite objective evidence of the harm this action is causing.

As I said before, complications have a way of creeping in. A family starts out on a pure quest to help their disabled child. It’s certainly sad enough when they bump into the limits of human knowledge and ability, and are unable to move their child closer to the wellness he deserves. Other frustrations—fatigue, penury, illness—may be unavoidable facts of life. But I would redouble those frustrations before I willingly ceded power to an agency that might never give it back.

Clicking the above image will take you to a video made on behalf of Tianze and other kids in the same situation. I’m sharing it because I perceive a trend in which we as a society are ever so slowly handing over control of our lives to unaccountable functionaries. If we continue doing this, we will never get it back.

Nor, I suspect, will our original problems be any closer to resolution.

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
UK

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

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

How I became a fanatic

Obsession

Years ago, my wife Judy and I had a baby with problems. Something bad must have happened to him prior to and/or during birth. We didn’t know that at the time. I mean, he looked great! But as an infant he cried pretty much nonstop and vomited frequently. And then he began missing developmental milestones, such as learning how to crawl.

Judy and I wanted to make things right. Who wouldn’t? The little guy depended on us. And by the way life at our house was not much fun. So we wasted no time in taking him to doctors. We found it a little confusing when those doctors simply told us to wait.

Waiting’s hard when a child shrieks all day and night. Judy and I were new at parenting, but surely this had to be outside the norm. How did other parents handle this kind of situation? Judy thought some people in our shoes might even hurt their kids. There were stories like that in the news. Lacking a better idea, she phoned a child-abuse hotline.

“What do people do?” She demanded. “What do they do when their baby keeps on crying and crying and crying?”

The counselor said it sounded like a medical problem and we ought to be seeing a doctor.

After the first year, the many doctors we continued seeing began to change their message. Instead of asking us to be patient, they now said we had to accept reality. Our son would always be different.

What condition did he have, then?

They didn’t say.

He still cried, still threw up, remained immobile. Would this be his future indefinitely? Were we seriously expected to accept this on his behalf?

Actually, we were. One doctor said to park him in day-care and get on with our own lives.

But why? What caused this?

“It just happened.”

When pressed, another pediatrician mentioned the existence of unconventional therapies. “But I’m not going to talk about that,” she added. “You’ll need to ask other parents.” Those other parents put us in touch with a provider who had a partial answer. Joseph had been hurt during delivery, she said. His skull had been compressed and could not expand. He was in pain.

The fact that she was able to alleviate his discomfort, and stop the crying, led us to believe that she’d been at least partly correct.

And later, when another alternative resource showed us how to get him crawling and then (at 39 months) walking, we felt sure that we were on the right track. And that the right track did not involve mainstream providers.

I began writing about the adventure, but the story took a less-upbeat tone as it continued following our trajectory. Years were passing, and Joseph hadn’t acquired speech. Oh, there were a few startling instances in which he said something—and then looked as surprised as we did—but even those tapered off.

I should add that there has never been doubt regarding Joseph’s own desire to have normal abilities. He was our active partner in the cause.

But Judy and I couldn’t ignore accumulating side effects of the effort (we were the ones doing the therapies, all day, every day), and the ongoing frustration, money worries, exhaustion, and loss of perspective. For her, all this led to illness, eventually to death.

And Joseph remained far from where he needed to be, if he was ever going to have any real options in life.

Belatedly seeking balance, I traveled, remarried, fathered and raised a couple new kids (blessedly free of developmental issues), and revived long-forgotten interests such as music.

Joe-arboretumAll that helped me, and hopefully the others around me, but accomplished nothing for Joseph. And so I couldn’t stop seeking providers who might have ideas. Incredibly, I still didn’t know the cause of his condition, or how it prevented him from acquiring skills. That meant everything attempted was a crapshoot (as it had always been; we’d just been lucky with those early efforts). Since interventions still tended to involve significant effort and financial outlay, my determination began to resemble a gambling addiction.

But what’s the alternative, when you see your first-born son sliding backwards? He has begun losing important abilities that I thought were solid!

Recently I took him to a genetics specialist (the only one in town) who said a new diagnostic test would most likely finally identify the cause, at least, of our troubles. For unknown reasons, the illustrious doctor would not perform that test. But gatekeepers bring out my inner bulldog. Joseph and I now have an appointment with specialists in another city, and if they don’t work out we’ll look further.

And when I know what he’s got, that will be one step along the path.

Seeking resolution

developing_trayThe last several weeks have contributed a new dot in a pointillist picture that has been slowly emerging, like a photo in the developer tray, throughout my son’s life.

The image still isn’t entirely clear. Often I have thought it shows a medical system that’s content to ignore the needs of helpless children who depend utterly on whatever interventions it might offer. That’s what I see when I’m angry. At other times, it looks more like a depiction of the futility of human effort. But the picture continues to take shape, with excruciating slowness, and maybe something more encouraging can yet emerge.

A little background: Joseph has a poorly understood developmental problem that has prevented him from being able to do anything constructive throughout his life, or even to interact normally with others. My memoir covers some of the avenues his mom and I pursued in hopes of making things better for him. And with his cooperation we did actually improve the quality of his life. Significantly. I think our story shows in part that it is worthwhile to extend yourself, and take risks, in pursuit of a cherished goal.

But our achievement of that goal was far from complete, at least partly because we never really knew what we were dealing with. Until you identify your problem, anything you do is guesswork. At various times in his early years Joseph’s doctors used terms like brain injury, cerebral palsy, encephalopathy of unknown etiology, autism, and (my favorite) “he’s got something but we don’t know what.” Treatment programs for such conditions have tended to be controversial, which means not endorsed by mainstream medicine. Which does not mean mainstream medicine had anything of substance to offer. (Please note that I do not blame doctors for what they don’t know. I do sometimes think a bit more effort on their part, in the interest of learning how to help a problem patient, would not be amiss.) For lack of an option, Judy and I took the route into controversy. Quite a few people we knew, or knew of, did likewise on behalf of their developmentally challenged kids — and claimed success! However, without a real diagnosis, we had little assurance that our efforts were being properly directed. When you do something for a period of time — something that may be very difficult and/or very expensive — and you see no result, what does that mean? Should you stop, or should you double down on the theory that more is needed? Questions like that can make a parent crazy.

When Joseph was 16 or 17 years old, a doctor visiting from the East Coast saw him and told me, categorically, that he was not autistic. Instead, various subtle cues I hadn’t even noticed meant that a genetic error was almost definitely at the root of his problem. Well, perhaps that would explain why all of the interventions reported to help with autism had failed us so miserably.

Next question: What, pray tell, is the genetic error? Maybe I’m just a geek when it comes to medical issues, and maybe I know only enough to be dangerous. But it seemed to me then, and still does more than ten years later (This spring he will have his 29th birthday; my boy is practically middle-aged!) — it seems to me that understanding the underlying mechanism would be a necessary first step toward real treatment. I mean, if for example he cannot produce some enzyme or cannot regulate some metabolic process, conceivably something might be done about that. Isn’t this worth exploring?

What has followed has been a series of widely-spaced visits with an eminent specialist in genetics/dysmorphology (ironically, someone who examined Joseph as a newborn and pronounced him free of genetic abnormalities, based on technology available at the time). I’ve tended to seek out meetings with this gentleman whenever my personal research suggests a known condition we might test for.

For example, in 2007 I read about Smith–Lemli–Opitz syndrome (SLOS), an inborn error of cholesterol synthesis (Joseph’s blood tests always showed low cholesterol) that shares many characteristics with autism, e.g., hypersensitive to auditory stimulation and obsessive-compulsive behaviors such as hand flicking. This sounded promising to me, but the doctor thought it highly unlikely because that syndrome comes with other traits that Joseph doesn’t exhibit. He did order a test, to placate me, but due to a series of snafus with the lab that test was never run.

Late in 2013 I read about 22q11.2 deletion syndrome, which comes with heart abnormalities, lowered communication skills, and poor ability to stay on task, and is impervious to autism interventions. Another possible match! Back Joseph and I went to the good doctor. Again, he said that was an unlikely diagnosis. He did mention this time that the state of the art has advanced significantly in diagnosing missing/duplicated genes and offered a reasonable hope that something called an array comparative genomic hybridization test might yield the answer for which I’ve searched so very long.

Incredibly, after six weeks I cannot seem to get this test performed. Repeatedly, I’ve taken Joseph to the lab for a blood draw, and the lab has said the paperwork is unclear, the order isn’t in their computer, etc. Somehow, going back to the doctor’s office does not help. Calling means leaving a voicemail that isn’t returned. Barging in there in person gets me a nice receptionist who says the doctor and his secretary are “not in today,” and who prints out more paper that the lab again refuses to accept

This test IS going to happen. I am not giving up.

But what picture is coming together with all this? Are we seeing primarily the sublime indifference of people presumably in a position to help? Is this simply an object lesson in my own unproductive, compulsive behavior? In weak moments I begin to wonder how productive any activity truly is. All this bustling about certainly keeps one occupied, but results are nice, too, aren’t they?

By the way, in warming up to get all this off my chest, I typed the following phrase in Google:

WHY IS IT SO HARD TO GET ANSWERS?

The first hit to come up with that is a post by another parent, also worried about her kid:

circle_of_moms_com

Taking the long view

long view

While our child is sick, we parents quite naturally see his speedy recovery as our number-one objective. We take him to the doctor. We get the appropriate medications. We keep him comfortable. And, almost always, he does recover very soon. Then everyone can return to more pleasant activities.

It’s natural to want a similar outcome if health issues arise that present a greater challenge. And of course, there’s nothing wrong with high expectations. Optimism is part of healthy living. When we believe things will work out well, we are happier and also better able to reassure a child who may be confused or frightened by his circumstances. This does not change the fact that some conditions, such as developmental disabilities, have no easy cure.

As the father of a little boy with poorly understood developmental challenges, I assumed at the beginning that surely some specialist out there would know how to help. All my wife Judy and I had to do was locate that expert.

Our son Joseph was not sick, in the sense of having an infection. There was no obvious injury. But he was in distress and functionally in terrible shape. He cried all the time. He had trouble keeping down his milk. Months passed and he failed to achieve the usual developmental milestones, such as crawling. No one who examined him seemed to know why. No one seemed particularly disturbed by the fact that they didn’t know why. No one recommended any treatment. This lack of a decisive response from the professionals upset me as much as did the problem itself. My reaction did disturb the doctors. I was not being reasonable, they said. Perhaps I needed counseling.

I reminded the doctors that I was not the patient.

Judy and I broadened our search and eventually did find providers who said they understood what was going on with our little guy. They offered alternative treatments—interventions not endorsed by the mainstream medical community. Some of these providers helped him. By the time he was two years old, he had finally stopped crying and had begun to pay more attention to the world around him. He no longer vomited every day. He had finally begun to crawl.

Judy and I believed that, at long last, we had found a path that would lead our family out of the distressing circumstances that had prevailed since Joseph’s infancy. Finally, we could look forward to enjoying a normal life with our son. And pending the arrival of that happy day, we felt enormously upbeat.

We understood by that point that the road would be long. I thought at the time it might take another two years.

Two very intense years later, Joseph had become a capable long-distance walker. He could swing by his hands on playground equipment. To a casual passer-by, he looked fine. But some problems lingered. Most alarming was the fact that he didn’t talk.

The alternative providers who had helped get him to this level could not address the remaining challenges. Judy and I renewed our search. Again, we found people who professed to have answers. This time, we were not so fortunate in the outcome. Joseph’s progress slowed and came to a halt. Today, he is a healthy, amiable adult, aside from the inescapable fact that he’s still disabled.

Obviously, the campaign to help him was not futile, because he did achieve major quality-of-life improvements. But it is also apparent to me that the trajectory of our campaign was problematic and more difficult than necessary. It brought us moments of utter joy but also intense frustration.

Neither emotion cancels out the other.

Sometimes life introduces circumstances unlike anything we would have chosen. And sometimes no good exit from those circumstances is apparent. Personally, I believe that it is reasonable to seek solutions for problems, even when those problems resist one proposed remedy after another. A single-minded pursuit of answers can inspire confidence and give life new direction. At the same time, parents of a disabled child must remember to take the long view. We must be kind to ourselves now, while we work toward a better future, even without attaining the longed-for objective, because this moment too is life. This moment too can be all that we make of it.

Our kids need that reaction from us, too.

Poems by Tianze Ni

opposites

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:

The Sun and the Moon
25th July 2013

Sun, Sun like a good boy.
Moon, Moon like a good girl.
Wait till day light,
Then the Moon will become a good boy.
Wait till day dark,
Then the Sun will become a good lady.
Odd numbers like even numbers,
Sun loves the Moon…
Moon love the Sun.
Boys love the girls.
Girls love the boys.

 

Summer time song
15th July 2013

Sun set, sun set, sun set
Beautiful, beautiful sun set.
It is dark red now,
The clock straight toward 9 PM
The sun cuts its head off…

Moon rise, moon rise moon rise now
Beautiful, beautiful moon rise.
It is dark blue now,
The clock straight toward 9:10 PM.
The Moon puts its head on…

Sun rise, sun rise, sun rise now
Beautiful, beautiful sun rise.
It is white colour now,
The clock straight toward 5 AM.
The sun puts its head on again.

If you are upset
28th July 2013

If you are upset, upset,
Just wait and wait,
Till dream and dream
And wake up.
You will be happy again…
happy again

If you are happy, and happy,
Clap your hand.
More happy you will have.

If you are sad and sad,
Just wait and wait
Till dream and a good dream
And dream…
Day will light again.

 

Dance in the moonlight
1st August 2013

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Day light, day light now
Happy and happy again…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car goes to high way
It would no more tummy sore…

I like dance and dance in the moonlight
I would take you down at any more…
Dream, dream, wake up,
Happy and happy again…
Car back to home,
It would no more tummy sore…

Sun Rise and Sun Set Song

21st September 2013

Sun rise, sun set,
Sun set, sun rise,
It looks like a switch,
on and off,
Off and on again and again.

I enjoy to play the switch, on and off,
off and on. . .
It looks like playing sun rise and sun set.
It looks like playing the time.

What things make sun set?
Where is the sun sleeps?
It is earth turn around,
It is jesus’ hand switch on and off.

   Lamp Post Song

1st November 2013

Lamp post, lamp post,
It turns off in the day light;
It turns on in the day dark.
It looks like a sun that shines in the darkness.

When I lay down in the sofa,
From home window,
I see lamp post on.
It gives me warm, hope and lights.
It gives me sunshine evening.

NiuNiu