MURDER AND ACCEPTANCE

I didn’t think I was going to write about this one, but it has been weighing on my mind. Another autistic child is dead.

The Cincinnati Enquirer reported that three-year old Marcus Fiesel was left alone in a locked closet, without food and water, while his foster parents, Liz and David Carroll went to two-day family reunion. When they returned, Marcus was dead. Some reunion.

The Carrolls spent the next two weeks telling authorities, the media, and anyone else that would listen that Marcus wandered off from a park after Liz Carroll fainted. In fact, according to the police, David Carroll took Marcus’ body to the ruins of an old house in the next county, burned the body in the brick chimney of the ruins, and then dumped the remains into the Ohio River.

Predictably, some bloggers are trying to relate this crime to the issues of acceptance of autism and autistics (please note that I used the plural of “issues” as I think accepting autistics is not the same as accepting autism, but that’s another topic). And I agree with that assessment to an extent. Obviously, the Carrolls did not accept Marcus as a valuable human being, but it was the Carrolls, themselves, who were less than human. Their obscene lack of humanity led to this crime.

What I can’t agree with is that their lack of acceptance necessarily had anything to do with videos by Autism Speaks, actions by pro-cure groups, or anything that has been said in the many debates that occur on a regular basis within the greater autism community. There is no indication that the Carrolls paid any attention to any of that. There is no indication that the Carrolls have any interest in autism at all. It is quite likely that the only thing Liz and David Carroll were interested in was the $1,000 monthly stipend they got from the state to “care” for Marcus. One can only speculate that the “care” was none too good.

Frankly, I am not too concerned what motivated these two wastes of DNA. All I care about is their taking the life of an innocent and defenseless child. No motive in the world can justify their acts.

The Carrolls have been charged with involuntary manslaughter and abuse of a corpse, pending the outcome of grand jury proceedings. Given the lack of evidence concerning what the law call “specific intent,” those charges seem technically correct, and yet it isn’t enough. Prison terms of 23 years are not enough. I’ll leave the punishment due the Carrolls to wiser souls, but I think it’s appropriate calling this crime what it was: not manslaughter, but murder.

WE’VE HAD ENOUGH

One year ago today, my family sat in a Texas hotel room, watching CNN and the Weather Channel as Hurricane Katrina changed our lives forever.

For years our local meteorological legend, Nash Roberts, warned us of what could happen if the right storm hit the city and the Lake at just the right angle. We called it “Nash’s doomsday scenario,” and the predictions of Katrina’s strength and path looked a little too close to what we had feared for so long. So the Rankins loaded up the car and got out of town.

We took little comfort after the storm took an easterly turn before hitting shore, for we knew this one was leaving behind a pretty wide swath of damage. What we didn’t count on, though, was the failure of the levees in our beloved New Orleans. We watched in horror from afar, witnessing scenes we never thought we’d see in America.

In the months that followed, the message got out, that New Orleans and the Gulf States would come back. And recovery will probably be achieved some day. After one year, however, it seems far away.

Even though the Northshore, where we live, did not get hit as hard as the city, we still feel the effects, and just turning on the news or opening the paper brings another reminder that we are living in the aftermath of a disaster.

Disasters can bring out the best in people, and it can also accentuate the worst. We’ve seen both.

People are determined that their homes and their city will be rebuilt. We’ve seen signs of life in the customs and celebrations we hold so dear. On the other hand, our politics ⎯ legendary for its ineptitude and dishonesty before the storm ⎯ is just as bad as ever, street crime has resumed and even gotten worse (spreading to areas that were once peaceful), and everywhere one looks there are reminders of just how large the job of recovery will be. The little things that made life in this area special ⎯ special enough to make one forgive the drawbacks to life here ⎯ are still buried.

To be sure, the joie de vive that infused life around these parts had a dark side to it, even in what we now call the “pre-K era.” The unofficial motto of South Louisiana is laissez les bon temps rouler, or “let the good times roll.” Problems and tragedies can’t be avoided, but our universal remedy has always been a good wake and a jazz funeral. It’s a wonderful outlook on life, and serves most bad situations well. But it falls short when confronting long-term problems like a destroyed city . . . or the challenges of raising an autistic child. Even as awareness of ASD grows, too many families of autistic children treat the condition as a deep, dark secret.

Chris Rose, who has gone from his past role as light-hearted lifestyle columnist to now being the spokesperson for an angst-ridden city, wrote this in Sunday’s Times-Picayune:

Waiting to feel better. Waiting to get worse. Waiting for a Better Break or Another Chance. Does that day ever come?

Yeah, you right. And waiting for the next hurricane.

Therein lies the rub. Even more than suffering from anniversary anxiety ⎯ the cauldron of agony and memory that we are boiling in ⎯ it seems like much of our communal psyche is caught up in the strange and fruitless wait for the next big storm to come our way to see how we handle it, physically, civically, emotionally.

The worst part for my wife and me has been trying to get services for our son. It was near impossible before the storm to get the local school system to provide that which it is legally obligated; in the last year they have a new excuse. Resources were stretched too thin for the state to hold any workshops for teachers to learn about dealing with ASD.

Through a lot of parental kicking and screaming, and thanks to the efforts of some wonderful people at the Little Rankster’s school, we saw progress. But not what should have been seen.

So we’re out of here. We’ve had enough.

The Rankins are off to a place where the discussion around the lunchroom doesn’t always involve getting over the last hurricane season and preparing for the next. We’re off to a place where the schools understand they have certain duties under IDEA. We’re off to a place where people don’t look at an autistic child as some freak of nature.

Are we looking for utopia? Yes. Will we find it? Maybe not. But we have to do something. Staying in South Louisiana is not the answer for our family.

People develop an emotional attachment to New Orleans that is difficult to explain. I feel like a traitor abandoning my home in its time of need. I will miss being a part of the rebirth of one of the world’s greatest cities. I’m not sure what that rebirth will bring; the city may be better than ever, or it may become an ugly parody of itself. All I know is that it won’t be my New Orleans. And for that I mourn, even as I look forward to a new beginning for my family.

SOMETHING WICKED, INDEED

Dan Olmsted continues his “Age of Autism” series with “Something Wicked ⎯ 2.” In the latest installment, he traces the history of hypotheses linking chemical exposure to the development of autism. All of it leaves me wondering why was the notion of environmental involvement not taken seriously for so long after it was first suspected. Why did we have to wait for autism to become so pervasive before we took a hard look at the obvious?

DEATH BY AUTISM

We hear far too many news stories of autistic children who die. And those deaths are often accompanied by expressions of anger. We heard the anger when a child died as the result of what appears to have been gross medical malpractice during what should have been an unremarkable chelation procedure. We’ve heard the anger more recently when an autistic child was killed by her own mother. Sometimes the anger is justified; sometimes it isn’t. It’s not my intention to raise those arguments again. Rather, I want to say something about a phrase I’ve heard whenever we hear the anger: “this child died because he/she was autistic.”

Sometimes the connection between the autism is easily seen; other times it is more indirect. But it seems to me that drawing a connection between autism and a child’s death should not be dependent upon intervention by a doctor or parent.

A story appeared in the Macon Telegraph last week, relating the sad news that Jabriel Eason, an autistic six year-old, drowned. His mother needed an afternoon nap, and she took precautions she thought would keep her son out of danger. She locked the door, using a bolt that was installed above where Jabriel could reach it, and pushed a sofa against the door. Those precautions didn’t stop Jabriel, and he was not seen again until the next morning when his body was found in a nearby lake.

Jabriel Eason died because he was autistic.

The discussions in Macon, Georgia following the drowning have centered on whether property owners should be compelled to erect fences around open bodies of water. That response is way too simplistic. To be sure, many autistic children are “runners,” but not all. And many autistic children seem to have a fascination for water, but not all do.

There is an obligation on society’s part to understand autism, and to make necessary accommodations for autistic individuals. That is, society as a whole must do what it can to make the world safe for autistics.

Parents of autistic children, however, have a corresponding obligation. We must fiind ways to communicate to our children the dangers that surround them, and we must try to remove any barriers that stand in the way of their understanding and recognizing those dangers. That is, we must do what we can to make our children safe for the world.

The dangers and obstacles that face our children are different for each individual child, just as the nature of autism itself is different for each child. Every week, we seem to hear another story of autistic individuals ⎯ children and adults ⎯ who become victims of the world around them. Sometimes those stories have happy endings, but often they do not. Each time I read one of the stories that ended badly, it haunts me for days thereafter. I don’t want my child to be a victim.

I cannot judge Jabriel’s family; I have no doubt they loved the child and did the best they could to safeguard him. That they did not succeed is a lesson for us all.

Jabriel Eason died because he was autistic.

THE CHEMICAL CONNECTION

In his latest piece, Dan Olmsted of UPI once again raises issues that need to be addressed.

Check out “The Age of Autism: Something Wicked ⎯ 1.”

A NEW HERO

Thanks to a post on the Evidence of Harm Board that pointed it out, I now have a new comic to read.

I have always been a fan of comics in all forms: comic books, editorial cartoons, and the “funny pages.” My new favorite, though, is a free strip on the internet called The Chelation Kid. Written by Robert Tinnell, with art by Craig Taillefer, a press release describes it as “a strip which documents the efforts of Tinnell and his wife as they attempt to recover their son from autism.”

If you haven’t seen it yet, make sure you click on the “Archive” link to start from the beginning. Like so many of our kids, young Jack was hitting all the developmental milestones, and then regressed into autism.

As the title implies, this strip has a biomedical slant. That means it won’t be to everyone’s taste. But I like it.

What there is of scientific and medical discussion is somewhat oversimplified, but I’m not going there for education in those areas. It’s a comic strip.

Undeniably, there is a bit of anger directed at the government and Big Pharma, particularly in a fantasy sequence in episodes 12 through 15. I understand that the creators are not advocating violence of the sort implied in those panels. It’s a comic strip.

Comics often take on serious subjects. It helps us to place things in perspective, provided it stays within the bounds of propriety. The Chelation Kid does that well.

Although the story is told from a father’s viewpoint, it is not a pity party. The hero is young Jack, and the story is about his transformation from Autism Lad into the Chelation Kid. And his story is told with humor and hope, two things we too often forget to inject into our lives.

FIVE WEIRD THINGS

Normally I wouldn’t do two fluff posts in a row, but there’s this meme going around the bloggosphere in which the “tagged” individual is to reveal five weird things about him/herself. Random John tagged me, and I’ve never been one to break a chain (I guess that’s a bonus weird thing about me). In any event, here goes:

My dog is named after a 19th century naval commander of some repute, Capt. John “Mad Jack” Percival. It would take a complete post in itself to do Mad Jack justice, or our dog, Percy, for that matter. The Captain can be Googled for some entertainment.

I like folk music. No, I mean I really like folk music. Mind you, I consider that a pretty broad category that takes in just about anything other than classical and baroque (which I also like), but in general, the folkier, the better. In the closet next to my guitars, you’ll find a banjo and a dulcimer, not that I manage to find the time to play anything. Thanks to XM Channel 15, I’m able to get a daily fix.

I play Powerball every Wednesday and Saturday.

I cry very easily, in both sadness and joy. All it takes is a news story that is either sad or inspiring, or especially a movie. The two that always get me at the end are Mister Roberts and Field of Dreams.

My wife’s name is “Sym.” Okay, that’s something weird about her rather than me, but it’s not really cheating since we currently live in a community property state; I can claim her weird thing for my own. Some may think it’s a little weird to fall in love with someone named Sym, but if you knew her you’d understand just how that may be the sanest thing I’ve ever done.

Now it’s time to tag a few more souls:

Ian Parker

Good Rockin’ Mommy Guilt

Mamaroo

WHAT BRINGS YOU HERE ON MY BLOGIVERSERY?

I’ll get back to more serious fare, including the Combating Autism Act soon. But it’s my blogiversery: one year since my first post. On special ocasions, I often take a few moments to reflect or maybe look at old family photographs. I thought about looking back at some of my favorite posts, but instead decided to share a few gems that come courtesy of my Site Meter™ reports.

As many of you know, Site Meter™ not only keeps track of how many people visit a site, but can also provide detailed information on where people are logging in from, what ISP they are using, what computer and browser they are using, and whether there was a referring site.

It’s the referrals I find most interesting. How did people wind up here. I’m gratified that many people come here purposefully without having been referred by another site. I’m also happy to see visitors arrive via links from other blogs that I like. But it’s the Google and Yahoo referrals I find most fascinating. To my utter amazement, many people actively search for “Wade Rankin” or “Injecting Sense.” Although I can’t help but be flattered by those searches, I have a lot more fun looking at some of the other search terms that lead folks here, and I’d like to share some of my favorites that I’ve collected.

Many people are asking specific questions, which is kind of unfortunate as I have no answers. Someone from Reigate in the U.K. wanted to know “what does the name Rankin mean.” Sorry to say, although I know quite a bit about my family’s background and roots in Scotland, I’m really at a loss to explain the “meaning” of the name.

Another visitor, obviously finding the wrong place, was interested in methods for “groundhog, removal, naturally.” One person in Ottawa was interested in the “cost of living in Delaware vs. Ontario.” A question that has me as mystified as the visitor who posed his query to Google is “do oak trees have helicopters?”

Another example of a service I can’t provide comes courtesy of someone in Mandeville, Louisiana, where I presently live, who wanted information on “football coaching jobs available in St. Tammany Parish.”

Of course, on ethical grounds, I must decline to provide answers to the person looking for information on “tricks of successful poisoning.” Perhaps that person is looking for the same information needed by the visitor from Rochester, New York, who wanted to know “how to give a hep b injection.” I’m more in line with someone from Yanceyville, North Carolina, who doesn’t seem to understand “why vaccinate my child for hep b.” There may be a positive answer for that one, but I don’t believe it involves injecting that vaccine within hours of birth.

In an existential vein, someone wanted information on “humanly authored religious texts [in] 2006.” Another visitor wants “country music that doesn’t make any sense.” I have to defer on that one. It’s probably a sad commentary on my life that it all makes sense to me.

One question I could answer, which came from Knoxville, Tennessee, is “what does geaux tigers mean?” It’s simply a South Louisiana way to express our support for the boys (and girls) in purple and gold.

Another easy one is the question of how to “prevent autistic boy from opening door knob.” I suggest engaging the lock.

I’m sometimes puzzled by the fact that people who should know more than I do about something are coming here for information I just can’t provide. One query from the International Atomic Energy Centre in Vienna, arrived here because of the following query: “mercury exposure of children, photo, simple explanation.”

Of course, not everyone is looking for information, which is good because I don’t have much to give. Somebody in Stockholm quite adamantly stated “I do not need more information on voodoo, I am quite familiar with it.”

Then there was the cry for help from New York: “I am under pressure! Uncle.” And I’m not quite sure what to make of the searcher from Oakland, who was interested in “big shots 1987 spanking.”

Someone from Ft. Worth, Texas got here by searching for “Joey Buttofuco and O.J. golfing.” I’m not so much perplexed about that search leading here so much as I am frightened that someone would be searching for that at all.

Speaking of being a little frightened, I’m a little worried about one recent search from Tampa, looking for “Camille Rankin.” In all fairness, Ms. Clark may be even more bothered by that one than I am.

One search query read: “my mother was a saint.” I understood why that one led someone here, because my mother was a saint.

I’m sorry to disagree with the assessment of a reader in New Zealand, who feels that “Mad Magazine is inappropriate.” Although I haven’t picked up a copy in many years, that publication was a big part of my formative years (but I guess that shows).

On the other hand, someone at a maternity hospital in Halifax, Nova Scotia understands what is needed in everyday life: a “sense of humor and common sense.”

An Ecuadorian visitor arrived here after typing “Wade Rankin California sensible.” I should point out that I haven’t been in California but once in my life, and that was many years ago. But I appreciate the implication that I would be sensible there. Also encouraging was the person in Brooklyn, who wanted to “wade on quite frankly.”

I can’t repeat all of the really great search terms I’ve seen lest I open myself up to libel suits. Suffice to say that I do not know of any sexual or criminal activities involving any physicians, so please stop coming here to look for that information.

One doctor whose name has led many here is, not surprisingly, Paul Offit. Many of the searches simply use his name, and I am still getting a lot of traffic from people wanting to know about Dr. Offit’s book, The Cutter Incident. One of my favorite all-time searches that brought someone here, though, was for “the top 10 beautiful ballerina Offit.” Talk about a hard image to get out of one’s head.

My love for music has this blog coming up on some fun searches. You’d be surprised how many people really want to know “Who Shot the Lala.” As all good students of New Orleans R&B know, the only correct answer is “I don’t know.” A lot of people come also wind up here whilst searching the net for lyrics to Irma Thomas songs. While you won’t find the words to “You Can Have My Husband, But Please Don’t Mess With My Man” here, you will find a kindred spirit.

And all that leads me to my all time favorite search that led someone here: “B.B. King’s Autism Speaks.” I ask you, what other blogger could have drawn that one?

PLEASE CONGRESS, DON’T HELP US

Well, we finally got a response from one of our senators to the letter my wife and I sent urging them to support the proposed revision to the Combating Autism Act and to help ensure that the proposal put forth by 21 organizations would be the one to emerge from the HELP Committee. Unfortunately, the bill that now before the Senate will not help us all move forward, and may actually be a step backward.

In any event, Senator Mary Landrieu responded, or more likely had her staff send us a letter that doesn’t make too clear if our letter was read or understood at all. But that’s still better than Senator David Vitter, who, to no surprise on my part, has ignored us completely.

Here’s Senator Landrieu’s letter to us:

Dear Friend:

Thank you for taking the time to express your concerns about Autism. I realize that this issue is one if personal concern and I will do all that I can to see that it is addressed. As you, I believe that this is a very serious matter that affects a large number of our children.

I cosponsored the Combating Autism Act of 2005 ( S.843 ), which is a bill to amend the Public Health Service Act to defeat autism through research, screening, intervention and education. If passed, the bill will provide enough funding to continue the research to strive to find the causes and cures for Autism, along with allocating those funds to the institutes, centers, and divisions of the National Institutes of Health. On July 19, 2006, the committee on Health, Education, Labor, and Pensions agreed to report this bill favorably and I will work to make sure this bill passes when brought up on the Senate floor.

While I cannot personally relate to the situation you are going through with you family, I am a strong supporter of continuing research to find out exactly what causes Autism and how it can be prevented. I am here to help in any way that I can, so please feel free to contact me in the future. I would also love to hear about any progress that you child is making, and I will continue to work on this bill to maximize the research devoted to Autism.

With kindest regards, I am

Sincerely,

Mary L. Landrieu

And here’s our somewhat lengthy response:

Dear Senator Landrieu:

Thank you for taking the time to respond to our recent correspondence. As we stated in our previous letter, we were aware of your co-sponsorship of the Combating Autism Act (“CAA”), and we appreciate your involvement in the issue. Unfortunately, the version that emerged from the HELP Committee was not the proposal that we commended to you.

When the CAA was first drafted, it did not meet with universal approval from various autism advocacy groups, for good reason. It was an expensive piece of feel-good legislation that seemed designed primarily to maintain the status quo. It was seen as a positive sign that some in the Senate sought input from the autism community. As a result, 21 separate organizations, with a wide variety of agenda and conflicting views on core issues such as causation and treatment, were able to agree on support for a consensus revision that would address several of the concerns these organizations had.

The consensus draft included specific language to ensure that the hypothesized role of vaccines and vaccine preservatives in causing autism would be researched to move us all closer to a resolution of that vital issue. The present language, calling for research into environmental factors may arguably include research into the role of vaccines, but there is no guarantee that the NIH and the CDC ⎯ both of whom have shown a bias against the scientific evidence that supports the hypothesis ⎯ will aggressively explore the issue.

The consensus proposal also included the creation of an Autism Advisory Board that would have provided needed oversight and transparency to the setting of priorities for research. The members of the HELP Committee apparently did not think transparency is a vital concern. Let us assure you that it is vital if there is to be any credibility assigned to the government agencies charged with protecting the public. In a recent letter to the National Institute of Environmental Health Sciences (“NIEHS”), urging the NIEHS to examine the issue of a possible link between thimerosal and autism, a bipartisan group (Senators Lieberman and Stabenow, together with Representatives Weldon, Burton, Maloney, Crowley, Smith, and Hinchey) expressed the lack of confidence that prevents the Centers for Disease Control (“CDC”) from having the required credibility to determine policy in this area:

… Unfortunately, as the lOM pointed out in its April 2005 report on VSD access, a CDC-led study on thimerosal and autism could be viewed with much skepticism and may not he accepted by the growing number of parents with concerns about vaccine safety and the possible links between thimerosal and autism. If the federal government is going to have a study whose results will he broadly accepted, such a study cannot be led by the CDC. It is for these reasons we believe that NIEHS is the most appropriate entity to lead such an investigation.

Unfortunately, the version of the bill that has been submitted by the HELP Committee grants near-dictatorial authority to the CDC, an agency that has demonstrated a complete aversion to fully exploring questions that may expose errors of judgment on its part. Meaningful oversight is a necessity, and the Interagency Autism Coordinating Committee that the bill now calls for will not guarantee a truly independent body to provide transparency to the process.

The coalition of 21 advocacy groups that enthusiastically supported the consensus proposal has become somewhat fractured. Some of the organizations fully support the bill, while others believe that no CAA at all is better than what is now before the Senate. We are inclined to reluctantly agree that the issues confronting us as a nation stemming from the autism epidemic are too important not to get it right the first time. As enthusiastically as we urged your support in our previous letter for seeing to it that the HELP Committee adopt the consensus proposal, we must now reluctantly urge you to reconsider your sponsorship of the bill.

We realize that compromise is a necessary part of the legislative process. But compromise is difficult for those of us whose families may be impacted by the CAA’s passage. In your correspondence to us, you would “love to hear about any progress that [our] child is making.” We will not make this letter even longer than it will otherwise be by relating our son’s whole story herein. (Should the opportunity present itself, we would welcome the chance to meet with you in person to help you understand a complicated issue.) Suffice to say, our son continues to make progress, primarily using interventions that some in the mainstream medical establishment scoff at, primarily because they do not wish to acknowledge that something as beneficial as the vaccine program may present a genuine risk to a subset of susceptible children.

The version of the CAA that is now before the Senate has the potential to shed light on the issues of causation, and show that the treatment protocols that so many of us are using are appropriate. It likewise has the potential, however, to enable those with vested interests to continue frustrating the efforts to seek the truth. Again, we may well be worried about appearances of impropriety that do not reflect the true picture, but the credibility of the CDC and the NIH have been so damaged that trustworthiness must now be legislatively enforced.

We will respect any decision you make as to your future involvement with the CAA. If you feel this bill should pass, however, we strongly urge you to take appropriate steps to ensure that the legislative history reflects the desire of Congress that the possible role of vaccines, other biological and pharmaceutical products, and their components (including preservatives), should be fully researched, without bias.

We further urge you to seek means of unbiased oversight of the research that will be funded through the CAA. Ideally, restoring the Autism Advisory Board would provide the needed transparency. Failing that, however, we urge you to cooperate with any independent organizations that may seek to fill that role. One such effort that is now forming will be called, appropriately enough, “Combating Autism Act Watch,” sponsored by A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning). It is unfortunate that a significant number of Americans feel that we can no longer trust the government, but you can help to restore that trust by facilitating the ability of citizen’s groups to monitor how the CDC and NIH implement the CAA.

Finally, we would like to draw your attention to two bills that were recently introduced in the House of Representatives.

H.R. 5887, the Vaccine Safety and Public Confidence Assurance Act of 2006, was introduced by Congressman Dave Weldon and co-sponsored by Congresswoman Carolyn Maloney (D-NY). This bipartisan initiative will create a separate agency to oversee vaccine safety. Because that responsibility currently resides with the CDC, the same agency responsible for promoting high vaccination rates, the resulting conflict of interest has undermined the credibility of the government and the vaccine program itself.

H.R. 5940, the Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006, was introduced by Representatives Maloney and Tom Osborne (again, a bipartisan effort). The purpose of the bill is to mandate studies comparing health outcomes between vaccinated and unvaccinated children that can help develop a better understanding of any possible connection (or even lack thereof) between vaccines and autism spectrum disorders, as well as other conditions that have sharply risen in recent years.

It will, of course, be quite some time before these measures make it to the Senate, but we mention them to underline the fact that these issues will not simply disappear. Answers must be found, and we ask that you be a part of that process.