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.

I’ve just received an email announcement regarding an attorney’s presentation for families who want to convince their school districts to provide services for their disabled kids.

 The email has its due share of acronyms that may not mean much to people outside the fray (IEP, IDEA, FAPE, OAH), but the message is pretty clear. Despite whatever the law says, and despite whatever ideals educators may have had when they entered the profession, nothing is fair. Essentially, the attorney will tell parents:

• How to plead the case for individualized services for their child
• To remember that, under the law, they are in theory “equal members of the team”
• How to break through the perception of the “crazy parent”

I used to go through those battles. Two or three times, in wrestling with Joseph’s school, I hired advocates–career educators who knew the lingo and knew how to pounce when the teachers and therapists representing the school tipped their hand. Despite a generally pleasant veneer, it was always an adversarial situation. Obviously, things have not improved.

Given the fact that money is tighter now than at any time in memory, how could things have improved? Fighting the system doesn’t come naturally to most of us. It certainly did not come naturally to me. Of course, seeking help for our kids leads a lot of people outside their comfort zone. But although we do have to seek that help, I can’t avoid wondering whether some avenues are worth the trouble.

Public money for things like individualized ABA programs just isn’t there, if it ever was. Families who insist on it are routinely blamed for their “sense of entitlement” – and generally end up with nothing anyway.

Am I wrong? I say that based on everything I’ve experienced and observed over many years, but somebody please do tell me I’m wrong.

What I like best about Rob Rummel-Hudson’s memoir is his depiction of duking it out with his daughter’s school in hopes of getting an assistive technology device that would help her communicate. In the end, the family raised money via their website and bought the thing themselves. It’s a beautiful victory. Not the end of their struggles, mind you, but the kind of step forward that everyone loves to see.

So, as I’ve suggested before, I like the idea of finding alternative ways of getting what you want. By this point in my life it comes naturally. But again, alternatives are no sure thing, either. Rob’s most recent blog post tells the story of someone who apparently tried to emulate his online appeal for funds but who left the participants with a suspicion of having been duped. Such stories can only hurt future legitimate efforts, in the same way that fraudulent memoirs undermine the perception of those seeking to tell the truth.

I don’t know what the families attending that presentation ought to do. But like the school districts we all have finite resources (I’m talking about time, energy, and spirit as well as money). Governments seldom manage what they have with any wisdom, which is a big part of the reason behind what’s going on in the news today. In comparison, families can reach the end of their ropes a lot sooner, and with more finality. Choose your battles wisely.

So there we were, the wife and I, sitting by the backyard pool at our friends’ house and enjoying a little camaraderie with the other guests.

I had been chatting idly about travel destinations with a retired airline pilot when a gentleman I’d never seen before happened to join us. Before long, I found myself deep in discussion with this new guy, the pilot having turned his attention elsewhere. We touched on sports and other safe subjects, but before long things became more exciting.

Craig, my new friend, mentioned that as a child he had been diagnosed with cystic fibrosis and had been given five years to live. I don’t think we exchanged ages, but based on appearances I’d have to say that, like me, he has left his youth far behind. Somehow, he survived CF, at a time when almost nobody did.

Seeing my interest, he told me that in his teenage years he’d studied the Chinese art of qi gong. The CF was already in remission by then, but he credits qi gong with the fact that he has kept it at bay all these years. What’s more, he and his wife, who is Chinese, have occasionally applied the principles they have studied — or the gift they’ve been given — to alleviate the sufferings of others. He mentioned a woman afflicted with Lou Gehrig’s Disease who regained mobility (at least temporarily) with their help.

At some point in the discussion, I explained my fascination by telling Craig that I have a disabled son. Craig seemed to think he and his wife might be able to help Joseph. In all these maladies, he said, treatment is a matter of locating a “blockage” in the flow of energy and freeing it. Now, that explanation doesn’t mean a whole lot to me. My education, such as it is, is Western. I understand the flow of blood through the circulatory system, I understand the flow of heat through a conductive material, but I don’t know what is meant by the flow of energy.

On the other hand, I don’t understand how acupuncture works, either, but I know from personal experience that acupuncture can sometimes help. A couple years ago, it conquered my very painful and debilitating case of frozen shoulder syndrome.

I like to know how a treatment works. But more importantly, when faced with an unacceptable problem, I like to hear that improvement is possible.

Over the years, this mindset has prompted me to do a great many extraordinary things on behalf of Joseph, some of which are described in WATB. A few of the providers I sought out did help him acquire new skills. Most of them succeeded only in transferring money from my bank account to theirs.

But again — some did help! Therefore, others might yet help further.

Qi gong is one of the few things we have never tried.

Other treatments, conceivably, may not have had a fair trial. Since my chance encounter with Craig, I’ve found an organization that is giving presentations here in Southern California regarding use of stem cells as a treatment for various conditions including autism spectrum disorders. They provide a mother’s testimony that this treatment improved her sons’ communication skills, eye contact, and openness to learning new things.

Joseph underwent something similar back in the 90s and staged a temporary improvement.

What’s offered now may be better, more advanced. I have been assured that it is.

Giving it a shot would mean crossing the border, no doubt because it is not legal in the U.S.

Hmmm. Am I ready to do that again? I’ve never based these decisions on whether a treatment was endorsed by the authorities. On the other hand, it was a disappointment to discover that these folks were not more mainstream. Also, while it’s true that I wouldn’t hesitate to trade my right arm for a significant improvement in Joseph’s condition, what they do is not cheap.

All families dealing with chronic issues may not share my fixation on the search for answers. There is, after all, something to be said for acceptance and balance in one’s life. I offer the fact that Song Yi and I were enjoying a poolside party as evidence that we too try to lead a normal existence. However, just below the surface, ready to respond at the slightest provocation, lives hope for something more.

Heard an anecdote today. It may be apocryphal but whether it actually happened really doesn’t matter.

A little old lady is in bed late at night, with the lights out, and she hears somebody trying to break into her house. She dials 9-1-1 but (due to budget cuts–entirely plausible here in California) gets only voicemail. She knows she can’t wait, so she hangs up and checks the phonebook for a doughnut shop. Calls that number and asks the manager if any policemen happen to be there. He says, “Well, yes, as a matter of fact we have two sitting here right now. Would you like to speak to one?” Next thing she knows, the bad guy is getting hauled away in handcuffs.

What’s the point of that tale? Quite simple: If there’s something you absolutely must have, or something your kid needs (which is the same thing), and the normal channels for accessing help aren’t working for you, don’t be surprised. Do be prepared to think creatively.

Maybe it’s a reflection on the quality of my own creative thinking, but I usually find that the first clever idea doesn’t work out that neatly. Staying with the above analogy, the shop is closed, or the cops have already come and gone, or maybe I can’t even find the blasted phonebook. In that case, there needs to be a Plan C. Any number of wild ideas will beat the alternative of giving up. What’s got you stumped right now? And how are you going to get around it?

If you haven’t seen it yet, a community newspaper serving Del Mar, California and the surrounding area ran a pretty decent article on the book last week. To read it, please click here.

If that title sounds like a bold promise to be making, please withhold judgment and stay with me for a moment. See what you think of the following, and let me know.

At the time most of the words in WATB were flowing out of my fingertips, the writing was an emotional outlet. But once it had been released, that pressure didn’t require me to spend further time burnishing the writing or putting my family’s life on display. And surely there are easier ways to become a published author, if that was my motivation. There was another reason, which came to me about ten years ago. A lot of people are in need of direction and perspective, and a lot of kids are counting on them to find it.

In hopes of sharing what I knew, I first launched an informational website. WATB is another offering.

By the way, I’m talking to myself here, too. Anything I suggest that sounds like an insight is one I’m still arriving at. Putting the right words together to define the situation is as much a benefit for me, still, as for anyone. That’s why I encourage dialog.

Of course, thanks to the Net, nobody today needs to spend any time being as lost and clueless as my little household remained throughout 1985 and most of 1986, and arguably far beyond that date. In those days, what we knew to be true came from very few sources:

• What we could see (i.e., that our baby was in distress)
• What we believed (that finding a way to help him was our responsibility)
• What the various doctors we consulted told us (first, don’t worry; be patient; and later, don’t blame yourself; and finally, don’t let this thing wreck your life)
• What alternative providers subsequently told us (that a little personal sacrifice on our part could make things much better)

At least some of the above points had to be wrong, or at best incomplete.

The story I tell was a matter of sorting through them
|Read the Rest of the Entry…

I read with great interest an article in the local paper about a trial screening for autism, which was administered to local one-year-olds. According to the article, of the children identified as potentially having a developmental problem, 75% were indeed so diagnosed by age three.

The first question that came to my mind concerned whether it is known if problems were later found in any of the kids who checked out as being OK in the screenings. However, the percentage raising flags seems roughly consistent with other statistics, so this sounds like a very worthwhile thing to be doing.

My next question is based on the fact that I have a 26-year-old son who had major developmental issues from the very beginning. When he was one year old, his mother and I wanted testing to establish whether he was at risk of being autistic. The doctors were unanimous in telling us that it was far too early to worry about that sort of thing. They were so unhelpful that we became alienated and sought medical care from alternative providers. A memoir I wrote about what we could and could not accomplish via that route is being published this year. At any rate, why is it that pediatricians have needed a quarter-century to get around to checking one-year-olds for warning signs, and only on the trial basis described in this article?

I’m very glad they’re doing it. But it doesn’t say much for progress that the idea is still novel enough to be written up in the Journal of Pediatrics.

UPDATE, June 14, 2011

Apparently, before lamenting the fact that it has taken this long even to do a pilot study of screening babies for developmental issues, I should take into account voices that still say screening is a bad idea.

I have a very hard time understanding how supposed experts can take such a stand. The above article in Reuters does not offer justifiable rationale. Yes, many screening tests can give erroneous results. They nevertheless have merit when the information is used intelligently. And the existence of wait lists for treatment hardly justifies further delays in getting on such lists. Just the opposite! If there must be a wait list, get on it now. If you find that you don’t need it, you can always get off.

When asked to list the various pitfalls families should try to avoid in seeking help for their kids, I sometimes mention the irresponsible things lay people post on the Internet. I must remember to mention as well the nutty contributions of professionals.

Recent autism list contributions by Teresa Binstock comment wryly on the “political benefits of diluting the definition of autism.” (That is to say, given a possibility that some aspect of modern life—say, pollution—might be causing an increase in the number of autistic children, some parties would have an incentive to try to prove that the numbers are not increasing after all.)

It’s not my purpose right now to wade into that controversy, but rather to talk about politics in general as it involves disabled kids. Because there are a great many such controversies, and while people take sides and go at one another’s throats, the kids we’re supposedly fighting about are in danger of being pushed off the stage.

There’s the dispute over whether it’s better to pursue remedies or to accept/embrace disability, which I talk about elsewhere on this site. There are more abstract debates, such as how much weight to give to genetics in explaining various disorders, and whether research in that direction is likely to make a difference. (“Politicians like genetic determinism as a theory of disease because it substantially reduces their responsibility for people’s ill-health.”) With vaccines, of course, there is the ongoing battle between “fear mongers” and “corporate shills.” When a new therapy stirs enthusiasm, some people become so wedded to the hope it inspires that they view skepticism as a personal affront. I’ve known therapists and educators espousing one approach or another who invested a significant portion of their energy in criticizing other providers whom they viewed as competition.

Although I think politics is an ever-growing—and necessary—part of the national conversation in general, I wish it didn’t intrude so heavily into the subject of how to help our kids. We cannot get away from it, however. You don’t need unusual skills at reading between the lines here to see that I too pick sides.

I suppose that means I’m as much at fault as anyone.

During the time I was looking for literary agents and publishers for my book, some of them said they liked my project because Joseph’s story would tie into the argument over healthcare reform. Presumably, they thought it would fit the narrative supporting increased government involvement.

As I see it, WATB supports the opposite conclusion. At least, the position our household took during the events described was that we had no need for bureaucrats (administrators in our HMO, for example) who were always denying access to the treatments we wanted. We needed information and professional guidance, yes, but the decision on what to do was ours. We knew we were going to be the ones living with the consequences. A lot of what we believed needed to be done for our son was not approved by insurance, and we were just lucky enough to be able to sacrifice our standard of living in order to pay for it ourselves (and to solicit donations to help pay for it). The way I see things, bean counters are never going to have the same priorities as patients.

New families coming into this sphere with young children in need of help can be forgiven if they see madness all around them. All these battles we’re fighting are relevant, and it seems to me they do need to be fought. But they are very seductive, too. While we stake out our positions and look for supporting evidence and burnish our arguments, time is passing. Our kids are getting older. New disabled kids are coming along. And nothing is changing in terms of what we offer them.

Is help ever selfish? More specifically, should we worry about our motivation for helping someone like a disabled child, or a older person wrestling with dementia?

Near the middle of WATB, the action takes a detour. Until that point, the focus has been on the campaign to find out whatever has been afflicting my disabled son Joseph and to provide whatever is required to overcome it. Then, just as the family is preparing to celebrate a major breakthrough, the news arrives that my 81-year-old father is in a hospital. The immediate health crisis that put him there has already passed, but for unknown reasons he has at the same time lost his grip on reality. Feeling charged up with confidence, I respond by setting out to get him fixed up, too.

I saw parallels between the two cases. Both my son and my father lacked meaningful explanations for their problems. Most recently, I’d read in his medical record that Joseph suffered from an “encephalopathy of unknown etiology,” which is Smokescreen lingo for “something wrong with the head, danged if we know why.” When I arrived at the hospital, Dad’s doctor used similar language. The sudden onset of Dad’s confusion did not seem to support a diagnosis of Alzheimer’s. After all, a week earlier, he’d been up in a tree on his extension ladder, cutting limbs with a chain saw. So neither patient fit any obvious syndromes.

Both required a lot of care at present. Their doctors expected both to continue to require a lot of care.

Any parent wants to see his kids grow and develop new skills and eventually assume some constructive role in the world.

Any adult with aging parents wants them to retain, for as long as possible, the positive characteristics that made them so important for so many years.

If something threatens those objectives, I believe it’s a natural response to resist it. It’s common sense to want what we recognize as the best for them. So when Dad’s doctor began talking about putting him into a nursing home, I objected. We did not get along. But that was OK. I already had lots of practice with not getting along with my son’s doctors.

The remainder of that episode in the book concerns my efforts to connect with my father, in order to enlist his cooperation in coming back from the mental thicket he’d wandered into.

A friend who later read the manuscript questioned whether the story about my dad belonged in a book about a disabled child. She wrote, “there is NOTHING anyone can do for elderly people who go through what he went through, and a lot of tragedy going on in families where people believe that they can. You can love the person, and they will flash bits of themselves as they leave, but no one has ever found any way to treat it, and accepting that can make it a lot easier to deal with.”

With due respect to my wise friend, I kept it in, because my dad did recover, at least to a degree, and was able to return home for another year or two. He even flew cross-country to visit me and see his grandson one last time, and that outcome was easier to deal with than a nursing home. I saw a couple basic principles at work in my response to both situations:

• Encephalopathy, or brain injury, or dementia, or retardation, or whatever the hell you want to call it, acts like a barrier separating an otherwise intelligent individual from the rest of the world and perhaps even from himself. Piercing that barrier sounds like a worthy undertaking.
• Letting some uncaring ignoramus in a white coat dictate your course of action might be a bad idea.

But in going through the manuscript one last time before publication, I noticed something my father had said the night we finally made contact again. Perceiving with surprise how anxious I was on his behalf, he said (sighing, if I remember correctly), “I’ll try to pull things together for a little while longer.” In other words, it was going to be an effort for him. And he was going to be doing it for me.

Was I asking too much? Was I wrong?

Don’t be alarmed. People come to this site with a variety of beliefs, to which they are entitled. I have no intention of preaching.

But Easter is here again. In SoCal it’s nothing like the major event—which came with a sense of everything having been made new again—that I dimly recall from Easters long ago in Carolina. Still, the kids in our house are charged up. And I find myself pondering a phase in my life that’s covered in the latter chapters of WATB.

There came a point in the early 90s when our family’s confidence reached a very low ebb. The treatment program that had helped our son Joseph overcome some of his disabilities was no longer working. His mother and I had been pushing harder and harder to make it work again, and we were breaking, in every sense.

I saw myself, in those days, as the prodigal son, who’d set forth to achieve something on his own and instead found himself in the pigpen of life.

Judy helped me view our situation in those terms because, following an unexpected conversion experience, she’d reached the conclusion that there was another, far better way. With her lead, we sought guidance from people who taught that healing and fulfillment of all good desires was available thanks to the sacrifice made at the first Easter.

If the written account is taken literally, Jesus demonstrated many times that it is God’s will for people to live free from disease and disability. The first obstacle to enjoying that blessing, we learned, was simply ignorance of it. The second obstacle was failure to understand that believers have the right to it. Beyond that—and I’m paraphrasing and simplifying like crazy, on top of my very imperfect memory and understanding—success is a matter of activating divine power through faith. What is required on the part of the receiver, they taught, is not mere hope, and not an intellectual understanding, but an inner conviction that what has been prayed for is already true, regardless of appearances. Faith, we read, is “the evidence of things not seen.”

Just as belief in the therapy program had previously sustained us, this new faith removed much of the anxiety that had returned to cloud our lives.

Now, in view of what happened subsequently, conclusions might be drawn concerning the truth of the scriptures, or the merit of the teachers we had, or our own capacity. Various people I’m acquainted with would opt for one or another of those explanations. I’m inclined toward the second, but as I say in the book, the whole subject seems to be beyond anyone’s understanding. Like Judy, I had personal moments of fleeting contact with something greater than myself. But I cannot claim any enlightenment as a result. What Easter represents transcends anything manmade, certainly including religion.

Which kinda leaves me in the lurch when it comes to talking about it with the young ones.