Stephen Gallup's Blog, page 12

It was a dark and lonely night …

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?

Father recounts struggle to find wellness for his developmentally disabled son

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.

Father recounts struggle to find wellness for his developmentally disabled son

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.

Who Needs Sympathy?

Please visit Faith's Mom's Blog to read a guest blog post I added there (and to see the other views available at that excellent site).

Also, I just realized that another post I contributed for Father's Day has been online here since last Sunday. I'm sure both hosts would appreciate comments.

Who Needs Sympathy?

Please visit Faith's Mom's Blog to read a guest blog post I added there (and to see the other views available at that excellent site).

Save Time, Save Money, Save Your Kid

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, 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 active involvement of so many people in real time provided a sanity check on everything anyone 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 in health, investment, 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 support 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.

Save Time, Save Money, Save Your Kid

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, 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 active involvement of so many people in real time provided a sanity check on everything anyone 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 in health, investment, 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 support 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.

My Letter to the Editor

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.

My Letter to the Editor

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.

What About the Boys and Girls?

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.