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 What About the Boy? 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, to the best of our ability. Our little guy depended on us to make the right choices and implement them correctly. At every fork in the road, we were at risk of wasting our resources of time and money and setting back his prospects for a better future.
In the mid- to late-90s, when I found my way into various online discussion groups, there were a great many people bouncing between those same perspectives. One parent announced in no uncertain terms that alternative treatment A was The Answer. Others argued for alternative treatment B. Someone else would warn about quackery, citing as an authority her child’s trusted pediatrician (who, incidentally, had not improved her child’s condition). Invariably, there would also be someone claiming that children with developmental issues do not need to be changed at all.
Even given that different kids have different needs, some of those folks had to have been on the wrong track. Still, I think they were all in a better position than my family had been, because the cumulative effect of having so many people actively involved in real time was a sanity check on everything any one of us said.
Clearly, finding the right track has to be the first step, and that’s the step I can help you with least. Each of us is looking at different specifics. We have different reasons for believing or not believing the various things we are told.
Many of us, I think, have a tendency to believe those whose promises are most extravagant. For example, providers tend to attract a larger and more enthusiastic following when they say they will not only make your kid better than he is, but that he will end up better than neurologically typical kids who were never at risk. There’s something about the way many of us are wired that we find our way to people like that, whether the advancement we seek is health, financial, spiritual, or some other arena.
Skepticism is always appropriate. And yet I am not here to steer you away from unconventional options. The only interventions that helped my son were unconventional. So people who refuse to entertain unusual ideas are likely to be missing something, too.
Once a general course of action has been established, it is right and proper to make plans, and to work hard to make those plans a reality. Control freaks take note, however: We can’t necessarily dictate the way events are going to unfold.
For parents, the first upset (after the discovery that their child has a developmental problem) is typically the disappointment of taking matters to a professional who does not help. Actually, I think a great many people can relate to this, even those who’ve never even had a kid. Many times, we turn to specialists of one sort or another with the reasonable expectation that they will help us in some way. We pay them, we agree to their terms, we do our part—and far too often they let us down.
When that happens, persistence is key. At times, we need to change direction, but we cannot give up.
In the long run, the decisions each of us makes have to be our decisions. Even if our expert guides have not let us down, our alignment with them is likely to inspire criticism from some quarter. That’s the next unpleasant surprise. But if we know why we have taken the course we’re on, we should be able to withstand challenges.
If we make thoughtful choices, and have trusted and valuable partners in the quest to help our kids, and if we stay the course in spite of taking hits along the way, I think we’ll see the best possible result.