Tuesday, January 3, 2012

What We Can Do For Him (and Ourselves)

By Stephen Gallup

By the time our son Joseph was a year old, my wife Judy and I were frantic.

He’d had a rocky start in life. Following his birth, the hospital had seen something unusual in him and kept him two weeks for observation. That part of the story had not alarmed us. We were first-time parents, and felt out of our depth. If something was not quite right, we much preferred to let the experts stay on top of the situation rather than trying to cope on our own.

But when he finally did come home, everyone remained as ignorant as before. Something was bothering the little fellow; anyone could see that. He cried all the time. He had trouble keeping his food down. And this continued with little or no change throughout that first year, and beyond. The doctors’ only recommendation for us was patience.  

It’s very tough to remain patient when your child is in distress.

With the passage of time, another issue became impossible to overlook: Joseph was not learning how to roll over, crawl, sit independently, stand –. Functionally, at his first birthday he was hardly more advanced than a newborn.

It seemed incredible to me that the doctors we took him to had no explanation, no therapy to propose, and no new advice. Well, at one point in his second year they did suggest something new. Judy and I ought to seek counseling, they said. Our anxiety was not healthy.

Joseph, however, still had no diagnosis and no treatment plan. His medical chart gave as his objective “to achieve normal developmental milestones,” but nothing was suggested that might help him do that. In other words, all anyone had was mere hope that things might turn around on their own.

“There’s got to be something we can do for him,” Judy fumed at the conclusion of one appointment.

“Oh, there are programs out there for children like yours,” the doctor responded. “But they’re controversial. I’m not about to recommend any of them.” When pressed for details, the good doctor suggested only that we “talk to other parents.”

All this took place in the mid-1980s. Folks today may have troubling imagining the challenge of accessing information without an Internet. Fortunately, other parents in our town did have news regarding alternative resources. And some of those resources did begin to make a difference for Joseph. By his second birthday, he had stopped the crying and vomiting, was more tuned in to his surroundings, and could crawl on his hands and knees. These changes excited him as well as us.

Judy and I no longer felt frantic. We saw no need to get counseling. What we were seeing our son do, on a daily basis, thrilled us. Yes, we were working very hard to make it happen. Yes, we were spending money. But our son was clearly benefitting!

The local newspaper ran a feature that described some of what we were doing to accelerate Joseph’s development. In the interests of providing a balanced picture, the journalist checked with pediatric neurologists, who argued that our program was just snake oil. The medical community did not endorse it, and so the doctors dismissed any reports that it was working as “anecdotal.”

Over time, Judy and I found ourselves in an adversarial relationship with mainstream doctors. Despite the exaggerated faith we’d originally had in their expertise, we didn’t blame them for not knowing everything. We did, however, wonder at their lack of intellectual curiosity. When it came to finding volunteers or funding, some doctors actually tried to make things more difficult for us. Our discussions with them were never constructive. Gradually, we just stopped seeing them altogether.

Now, if the world of alternative medicine had answered all of our needs, that would have been fine. But Joseph’s progress continued to present challenges. When he was 39 months old, he finally walked independently. And there were other red-letter days, as well. But speech was becoming an even greater obstacle. We knew he could hear, but (aside from very infrequent words here and there) he just could not talk.

Nobody had helpful answers for that.

Because some alternative therapists had helped with the early challenges, Judy and I now expected to find others who could guide us at least a bit further through the maze that the campaign had become. We stumbled into a pitfall at this point, and I see now that many other families find it as well. There are plenty of people out there promoting treatments of one sort or another. Many point to what the skeptics call “anecdotal evidence” in support of their claim to having the very thing we, the desperate parents, have been seeking. The early interventions had made a lot of sense to Judy and me. But later, we did things that we only hoped made sense. Trying the treatment du jour, without understanding the rationale for doing so, wastes valuable time. It wastes money. And perhaps worst of all, the pursuit can gradually deplete a family’s spirit.

Eventually, as part of an effort to come to terms with what happened, I wrote a book about our family’s experience. This article can only scratch the surface of what it says. However, the following points are a good start:

Even if we had achieved nothing with Joseph, I would not regret having taken a chance and trying to help him.

The fact that we did achieve wonderful things will always be a source of pride and satisfaction for everyone who was involved.

On the other hand, even given the arrogance we encountered there, I do regret becoming cut off from the mainstream, and falling into what could easily be described as a cult environment. The effect on us was to lose touch with potentially valuable sources of new information.

But again, doing something imperfectly still beats doing nothing.  

And finally, a challenge like this—and life itself, I suppose—may be more about process than it is about the end result. In other words, it’s not smart to put your life on hold in the pursuit of a cherished objective. Yes, work hard to achieve that goal as completely as possible, but don’t forget that you are living now, too. This especially includes cherishing your child and making your love for him obvious every single day.

Stephen Gallup is the author of What About the Boy? A Father’s Pledge to His Disabled Son. Visit fatherspledge.com for more information.

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