STILL HERE

I’ve been working on a post to pick up where I left off, but my work schedule has been very demanding lately. Although I hope to have that “real” post ready in the relatively near future, I wanted to drop a quick note to say we stayed home for “the Second Coming” (a/k/a Hurricane Rita), and made it through just fine. But some friends of mine did not do so well.

In my first year out of law school, I was given the wonderful opportunity to serve a one-year term as the law clerk for the Honorable H. Ward Fontentot. Judge Fontenot is the presiding judge -- well, the only judge to be precise -- of the 38th Judicial District Cameron Parish, Louisiana. (And a fine judge he is, I should add.) Cameron Parish is a geographically large, but sparsely populated, area on the Gulf Coast. Many of the residents work in the oil fields or raise cattle, but the big industry there is fishing. The people down there are hard-working and fun-loving. And 22 years ago, they showed great kindness to a wet-behind-the-ears city boy.

Cameron Parish is no stranger to hurricanes. Back in 1957, Hurricane Audrey decimated the area. Everyone I met down there had a story about someone who didn’t make it that time.

Once again, Cameron Parish was ground zero for a major hurricane. Officials have estimated that 100% of the homes down there have been damaged, and perhaps 90% are a total loss. Just as occurred during Hurricane Audrey, the only building left standing in the town of Cameron is the courthouse. The only good news is that most of the residents safely evacuated before the storm.

The people of Cameron Parish have been down this road before. I suspect they’ll do what they did last time. They will rebuild. That’s what they do.

I’LL BE BACK

In my most recent post, I tried to address the semantic differences that I believe are at the heart of the divide between the biomedical and neurodiversity communities. Ironically, my verbiage seems to have created some misunderstandings in both camps as to where I really stand. Before going any further, I want to clear up that misunderstanding, and perhaps look at whether we really can find common ground. Unfortunately, my work and family will require all of my attention in the next few days, so it will probably be sometime next week before I can write that next post with any degree of clarity. Please bear with me, and continue to leave any comments you feel appropriate.

Thanks.

R-E-S-P-E-C-T (Find Out What it Means to Me)

I was privileged to have the parents I had. We were not wealthy, but the lessons they gave me were beyond any price.

My father, Hugh F. Rankin, was a relatively well-known historian specializing in the American Colonial period. In the 1930’s he studied engineering and worked in the construction field, building roads and bridges. During World War II, Dad served in the Army, building airfields. He injured his back so badly that he was forced to leave his original field behind. He returned to school on the G.I. Bill, and rekindled a lifelong love affair with history.

Dad was part of a group of post-war graduate students, many of them at the University of North Carolina, who became legends among southern historians. A couple of decades ago, another great historian, the late, great Dewey Grantham, interviewed many of his peers from that era for a project of the Southern History Collection at the UNC Library. My father was one of the interviewees.

Years after my father’s death, I came across a transcript of Dewey’s interview with him. They discussed everything but history: influences, the joys of teaching, family background, etc. In the middle of their conversation, Dad discussed one of the most important life lessons he ever learned.

My father was raised in a small town in North Carolina’s tobacco country. Although he was raised in a family that was relatively free of racial hatred, the culture of the time was one of class and race divisions. It was just understood. One day, Dad was supervising the construction of a road, and they encountered an unanticipated problem with the terrain. All of the engineers, designers, and supervisors were huddled, trying to determine the solution. None of the decision makers paid any attention to a middle-aged African American gentleman standing nearby. He was employed in the only position available to him: delivering water to the white workers.

As the group argued about potential solutions, Dad grew more frustrated because each suggestion he heard was impractical. After he pointed that out, the water man, who had been listening intently, decided it was time to pipe up: “It’s simple Cap. You just move that over there.” As the others rolled their eyes and went back to arguing over their elegant solutions, Dad looked to where the water man had pointed. He then looked at the water man, and then turned to the others in the group and argued for the simple and direct solution that the ignored African American suggested until the others reluctantly gave in. The solution worked. And my father vowed to himself that he would never again dismiss anyone based on their appearance or station in life.

Dad never told me that story while he was alive. He didn’t need to. Every moment I spent with him was a lesson in respect learned from observing the way he interacted with people. On family road trips -- in the pre-Interstate Highway days before self-serve gas stations -- we would pull in to rural filling stations with attached country stores. Whether the person working the pumps was an elderly African American, a 12-year old, barefoot boy, or a young adult in a starched shirt, my father’s request was always worded the same and delivered in the same respectful tone: “Fill it up with high test, please, sir.” In whatever context I witnessed Dad interacting with anyone, he always deemed every human to be worthy of respect until he or she showed otherwise. My father never had to tell me that; he just lived it and I absorbed the lesson.

About a month ago, before a hurricane rudely interrupted my life, I posted some thoughts about what is known as the neurodiversity movement. The rhetoric I saw on other sites from both the neurodiversity and biomedical communities seemed harsh and defensive. I wanted to see if we could all stop shouting long enough to listen to each other. The dialog that was started exceeded any hopes I could have had. Since those posts, I have continued to get to know some of the neurodiversity crowd through comments at blogs and through email. I may disagree with some of what is said, but I respect those people and their opinions.

When you get right down to it, we have far more in common that we have real divisions. The divisions are largely the result of semantic differences. As we continue to discuss things in a rational and respectful manner, we develop a common lexicon and we learn.

Anything worth believing in should be able to stand up to scrutiny. I firmly believe in what my wife and I are doing for my son through biomedical interventions. The respectful conversations I have had with those who think otherwise have not shaken my belief. I will continue to encourage others to consider walking the same path we are walking. But I have learned enough from my new friends that I am starting to recognize the limitations of what we are doing.

In the biomedical community, we often throw around the word “cure.” When I use that word, I know what I mean and most other people who practice biomedical know what I mean. We are seeking to alleviate the dysfunctional aspects of ASD in our children. We will never alter the genetic makeup of our children, and to the extent genes make them autistic, they will remain autistic. I can live with that. But I believe that one or more environmental insults has acted in concert with my son’s genetic makeup to create stumbling blocks that keep him from using all of this gifts. I cannot believe I am wrong in trying to reduce the effects of those environmental insults.

On the other hand, when I am confronted with the eloquence of Kathleen Seidel or the extraordinary testimony of an adult with autism who wants no “cure,” I have to realize that the issues surrounding ASD are not easily addressed by one-size-fits-all answers. Could the “cure” we seek help other people who reject biomedical interventions? Perhaps, but that’s not a necessary given. More importantly, that’s not my choice to make.

We have much to learn from each other, but we cannot learn if we don’t listen. It’s called respect.

Thanks Dad.

PINE TREES AND OAK TREES

Thanks to the coverage of Hurricane Katrina, the rest of the world has been learning a lot about the geography of the New Orleans area. By now, most of you realize that we refer to our counties as parishes. Orleans Parish (i.e., the City itself) and suburban Jefferson Parish are on the south shore of Lake Pontchartrain. To the north of the Lake lies St. Tammany Parish where I live.

Trees define the different locales. I grew up in Uptown New Orleans, surrounded by lots of oak, magnolia, and pecan trees. “Live oak” trees, covered in Spanish moss, are as emblematic of the City as the Superdome or the St. Louis Cathedral. Those trees are particularly stout and can stand up to a lot. Indeed, there are live oaks in the Midcity area, particularly in City Park, that are older than the City itself. Many of those trees are now thought to be in peril because they have been submerged for too long in toxic flood waters.

Although we have many different species of trees in St. Tammany Parish, including live oaks, we are really known more for our pine trees, some of which soar to heights in excess of 150 feet. Pine trees are very supple, and will bend and sway even in strong winds. But pine trees have very shallow roots, and the trunks are not terribly strong. If they are hit by hurricane-force winds, they may either topple over or simply snap in the middle. Residents of the gulf states know all too well the sight of snapped pine trees after hurricanes.

As we drove home from Chicago this past Wednesday, I tried to picture broken pines so that I would not be shocked when I actually saw them. I had a long time to think about it. It was an 18-hour drive in a very crowded car. And the youngest occupant was an autistic child who apparently had ingested a little gluten and or casein the night before. Anyone who doubts the efficacy of the gluten-free/casein-free diet should see what happens when an autistic child on the diet actually ingests even a little wheat. I’ve heard it described as an opiate-like reaction, and that seems accurate. My son was on the wild side, and he had no way to work off the nervous energy, except to run around road-side rest areas. It all added to the stress level in the car.

Another thing adding to the stress level was the realization that we would soon be driving into the hurricane-affected area. Relatives had already seen our house, and we knew the damage would be relatively minor. We found out that afternoon that electricity had been restored to our neighborhood. But we also knew that there were a lot of trees down. By the time we got about halfway into Mississippi, however, it was too dark to see the trees on the side of the Interstate.

We got a call from our friend, Reed, who had a key to our house. He stopped by to spend the night in between two days of trying to salvage personal goods from his home in Slidell, a very hard-hit area. The call was to warn us that coming into the house might not be terribly pleasant. After eight days without electricity, all of the meat stored in the freezer thawed.

We pulled into the subdivision a little after midnight. Trees were down everywhere. A willow near our front door was pushed completely onto its side. The top half of a 40-foot pine lay across our front lawn. Another 40-footer from a neighbor’s yard lay across our fence with the top branches on our roof. We were lucky. The neighbors on the other side of us had a 60-foot pine through their roof.

Reed was right about the aroma emanating from our refrigerator. There are no words to adequately describe just how bad rotting meat can smell. Despite the late hour, we spent a couple of hours cleaning out the contents of the refrigerator and freezer, and starting the long process of attempting to deodorize the unit. (That process continues a few days later.)

Getting home did my son a world of good. His routine is still a shambles; school will not reopen until early October at the earliest, and it’s not very clear whether his school will be able to provide the services he needs. But the morning after we arrived home, my son woke up, unpacked the Buzz Lightyear suitcase in which he carries his toys, and just enjoyed being in his own room.

A return to normalcy has not come so easily for the rest of us. National Guard troops are everywhere. Many large parking lots have tents set up for use by disaster response teams from FEMA, the Red Cross, or insurance companies. The sounds of helicopters and chain saws are ubiquitous. The stores still prominently display generators, batteries, and chain saws, but the post-disaster necessity that is the hardest to find is the simple television antenna. With cable out of service for the indefinite future, rabbit ears are a valuable commodity.

Downed trees created the need for the chain saws. Downed trees took out the power to the entire Parish, the full restoration of which is not yet complete. Downed trees brought down the phone lines. Downed trees took out cable television. Downed trees damaged my roof and destroyed part of my fence. And the sight of downed trees greets us everywhere we go.

When confronted with strong winds, pine trees either bend or they break. Arborists say that whether they bend or break depends on whether the tree was planted in the right place. Nevertheless, when you see two seemingly healthy pine trees of about the same size that were just a few feet from one another, and one is still standing and the other is lying across the lawn, you can’t help but believe that the lot of pines is determined by random fate. Some seem destined to be survivors.

I spent much of this past weekend working with trees. We have several small trees of different species (mostly pears) that had blown over onto the ground. Their roots remained in the soil, and there was no significant damage to the trunks. I pulled those trees to an upright position, staked them in place, added a little soil, and watered the roots. They seemed to be survivors who needed a little help. A globe willow, a water oak, and a pine that were down could not be saved. So the sound of a chain saw closed out the weekend in my yard.

We took from working around the house to take a ride Saturday evening. We drove along the lakefront in Mandeville. The lakefront is a place of beautiful old homes, many built in the latter-19th or early-20th centuries by well-to-do New Orleanians for use as summer homes. The lakefront is the one place where majestic live oaks outnumber pine trees. Live oaks stand up to wind far better than pines, but many of them were no match for Katrina’s storm surge. Neither were the houses and buildings.

As much damage as hurricane-force winds can do, the real deadly force in a hurricane is the storm surge. The hurricane pushes water onto shore, releasing a tremendous amount of energy. Katrina pushed water from the Gulf of Mexico into Lakes Borgne and Pontchartrain, and then pushed the water from the lakes onto shore. In Mandeville, the surge brought a huge wall of water that destroyed everything on a first-floor level. Houses were missing their fronts. Restaurants were reduced to empty shells. But the most amazing sight was of huge live oaks tossed to the ground as if they were accessories to a model train set. Just as wind had been the bane of so many pines, water destroyed some of the live oaks. Just like the wind-whipped pines, though, some of the oaks stood up to the surge and survived. Again, it all seemed so random.

There is a bar and pool hall named Donz on the Mandeville lakefront. It has always been somewhat of a notorious landmark, a thoroughly unpretentious dive in the middle of the high-rent district. Katrina’s storm surge reduced Donz to an empty shell: no doors or windows, no interior walls, no fixtures: just four incomplete walls. As we passed Donz Saturday evening, it was packed with people -- no doubt the regular weekend clientele -- who all sat on folding chairs or on debris, drinking beer they brought themselves. They too were survivors.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Before leaving behind discussion of Hurricane Katrina and its aftermath, I wanted to once again thank everyone who expressed concern for Sheila Ealey and her family, and especially thank everyone who helped give Sheila real options to turn an unbelievable loss into something positive. Sheila is moving to Austin. As anyone who knows Sheila could surmise, her decision was made not on the basis of what would be most rewarding for her, but on where her children would have the most opportunities for success. I doubt I will need to give any further updates on her progress, for we will all be hearing more from this lady.

ANOTHER PERSPECTIVE

We made it home safely. I hope to post something about the journey home and what we found on our return. After that, I hope I can return to posting an autism blog rather than a hurricane blog. But there is still so much to be said about this disaster.

I need a little more time before I can finish telling my family's story. I suspect the only moral to be taken from any personal account I can add will be that some people can incredibly fortunate. So today, I want to post the following first-hand account, which is far more enlightening than anything I can say. This account, written by a student intern in the Sports Information Department at Louisiana State University, has been making the rounds on the internet for good reason. Like many of us have been doing recently, this young man reached out to his friends via email because the phones were (and still are to a certain extent) virtually useless. The writer details some of his observations at the Pete Maravich Assembly Center (or the PMAC as we Tigers call it) and LSU Field House, which were being used as evacuation facilities. After my rant against the FEMA leadership in the last post, I thought it might be appropriate to highlight the tremendous effort being made by both volunteers and federal employees.

Little did I know what I would be doing following Hurricane Katrina’s aftermath but as I type right now, there won’t be a more gratifying or more surreal experience than what I went through tonight. We went up to the office today and held a press conference regarding the postponement of the game [the football game between LSU and North Texas State that was scheduled for September 3, 2005] and it was the right decision. As the PMAC and Field House are being used as shelters we decided as an office to do everything we could to help the situation.

At first, we were just supposed to make copies of this disaster relief form for all of the people. The copiers will never print a document more important than that. It’s weird. Nearly 12 hours ago we were running off copies of game notes for a football game that is now meaningless. We printed the copies and carried them over to the Field House at 6:30 p.m. I wouldn’t leave the area for another eight hours.

On the way back to the PMAC in a cart, it looked like the scene in the movie Outbreak. FEMA officials, U.S. Marshals, National Guard, and of course the survivors. Black Hawks were carrying in victims who were stranded on roofs. Buses rolled in from New Orleans with other survivors. As Michael and I rode back to the PMAC, a lady fell out of her wheelchair and we scrambled to help her up.

We met Coach Miles and Coach Moffit [LSU’s head football coach and strength coach] in the PMAC to see all the survivors and it was the view of a hospital. Stretchers rolled in constantly and for the first time in my life I saw someone die right in front of me. A man rolled in from New Orleans and was badly injured on his head. Five minutes later he was dead. And that was the scene all night. What did we do, we started hauling in supplies. And there were thousands of boxes of supplies. The CDC from Atlanta arrived directing us what to do.

One of the U.S. Marshals was on hand so the supplies would not become loot. I asked him what his primary job was. He serves on the committee of counter terrorism, but once he saw the disaster, he donated his forces to come help. He said the death toll could be nearing 10,000. It was sickening to hear that.

After unloading supplies, I started putting together baby cribs and then IV poles. Several of our football players and Big Baby [LSU basketball player, Glen Davis] and Tasmin Mitchell [another LSU basketball player] helped us. At the same time, families and people strolled in. Mothers were giving birth in the locker rooms. The auxiliary gym “Dungeon” was being used as a morgue. I couldn’t take myself down there to see it.

I worked from 8 p.m. until 2:45 a.m. Before I left, three more buses rolled in and they were almost out of room. People were standing outside. The smells, the sights were hard to take.

A man lying down on a cot asked me to come see him. He said, “I just need someone to talk to, to tell my story because I have nobody and nothing left.” He turned out to be a retired military veteran. His story was what everybody was saying. He thought he survived the worst, woke up this morning and the levees broke. Within minutes water rushed into his house. He climbed to the attic, smashed his way through the roof and sat there for hours. He was completely sunburned and exhausted. Nearly 12 hours later a chopper rescued him and here he was.

We finished the night hauling boxes of body bags and more were on the way. As we left, a man was strolled in on a stretcher and scarily enough he suffered gunshots. The paramedic said he was shot several times because a looter or a convict needed his boat and he wouldn’t give it to him. Another man with him said it was “an uncivilized society no better than Iraq down there right now.” A few minutes later he was unconscious and later pronounced dead. I then left as they were strolling a three-year old kid in on a stretcher. I couldn’t take it any more.

That was the scene at the PMAC and it gives me a new perspective on things. For those of you who I haven’t been able to get in touch with because of phone service, I pray you are safe. God bless.

Bill Martin
LSU Sports Information

There’s a lot of good people doing some pretty incredible things around here. Last night, I listened on the satellite radio in our car as Chief Eddie Compass of the N.O.P.D. told us about the unbelievable job being done by the officers who stayed on the job even as many of their comrades deserted the City. And the New Orleans area is getting help from its friends and neighbors, including many who may recall Louisianians coming to their aid in times of need. Things will never be the same around here, and that is both a blessing and a curse.

STILL A REFUGEE (But Doin’ Well)

Well, we decided to extend our “vacation” a little longer, so we drove to the Chicago area to visit some of Sym’s relatives. Hopefully, the craziness back home will subside a little while we’re here. In the meantime, I thought I’d post a few thoughts and such concerning the hurricane.

First, Sheila and Ron have been touched (as have Sym and I) at the response to their situation. Just knowing that people care does a lot, and the options that many of you have suggested give the Ealeys a real choice to make. And choice is a valuable gift indeed. Like all of us, Sheila and Ron are still trying to catch their collective breath before they decide what they will be doing. I’ll keep you posted.

I hope that those of you outside of the New Orleans area can understand the anger many of us are feeling these days. As we were driving toward Texas almost 24 hours before Katrina made landfall, we listened to an interview with the director of FEMA. He bragged that, due to his foresight, the supply lines were already moving, and that the federal government would be there as soon as the winds stopped blowing. That is the role FEMA is supposed to play. State and local governments cannot be expected to make an adequate response at a time their infrastructure is in shambles.

The delayed response by the federal government was inexcusable, and helped feed the violence and chaos that we’ve all seen on the television. Certainly, not all of the lawlessness resulted from need or even frustration (but some did). Even before the hurricane, New Orleans had too large of a criminal subculture arising from the extreme poverty in which so many live. Many in the criminal element stayed behind to take advantage of the opportunities that can arrive with a disaster. But if the federal government had been on the scene when they promised they would, there would have been far less of an atmosphere of chaos to shield the lawlessness, and certainly an earlier presence of ground forces would have helped control the situation.

The problem was not just the lawlessness. One has to ask how many people died simply because food, water, and medical attention were not made available promptly. I fear the casualty numbers from this event will be more horrific than any of us can imagine.

The cries of racism arising out of the mishandling of the federal response are understandable, but are just plain wrong. The local governments of predominantly white areas of St. Bernard and St. Tammany Parishes have tried in vain to get anyone from FEMA to contact them. In the case of St. Bernard Parish, the failure of the federal government to respond is particularly puzzling because that area has been hit hard. No, the federal government’s failure is not due to racism; it is plain incompetence mixed with perhaps a little indifference to the plight of all fellow human beings.

Leaving aside my anger at FEMA, I have to express my complete admiration for the military forces who responded to the disaster. The helicopter crews who rescued so many under the most challenging circumstances are to be commended. When the ground troops finally arrived, the cool-headed leadership provided by General Honore helped diffuse the anger and violence.

While I am passing out kudos, let me say how grateful I am to the Republic of Texas for the manner in which they responded. Perhaps they recall how we in Lousiana have always responded to disasters that befall our neighbors. Still, the unhesitating charity Texans have shown my fellow Louisianians has been breathtaking. As for those of us who were lucky enough to stay at hotels in Texas, we could not have asked for nicer treatment. On the day we left, we saw young people everywhere holding car washes or doing whatever they could to raise funds for disaster relief.

The Rankin family has been very lucky. We have jobs to go back to. The reported damage to our home has been relatively minor. We plan to stay up here in Chicago for another day, and we will return to Louisiana on Wednesday. So I may be away from the blog for a couple of days. When I can, I’ll try to post something about what we find at home.

Before I close this chapter, I want to thank everyone for the public and private expressions of love and support. Even though we lost relatively little in this storm, the pain at watching our beloved city die two deaths was often excruciating. The other autism bloggers (particularly Ginger, Kristina, Brett, Tamar, David, and Kelly) all provided words of encouragement. My new friends from the neurodiversity community (Kevin, Katherine, Clay, jypsy, et al) all touched my heart. And even a certain respectfully insolent individual with whom I have disagreed in the past (and with whom I will continue to agreeably disagree in the foreseeable future) made sure I received some good wishes. I received countless private emails from people I didn’t know but who wanted to take the opportunity to express their sympathy to somebody who could hear them. I heard all of you, and I assure you all that I will not forget your kindness.

WE ARE THE BLESSED

Our involuntary vacation continues, but the news of our family is good. All of our close relations seem to be safe. The firm I work for is picking up the pieces and trying to get back going. We’ve just heard that our house apparently sustained only minor damage, and there is nothing we left there -- other than some family mementos -- that can’t be replaced. We are the blessed. But we know so many that have not been so lucky.

Members of various groups of people are helping their own, and the autism community is no exception. An effort is underway by Unlocking Autism to help families with ASD kids. That is certainly a worthwhile effort. Another means of helping is to focus on individuals. I want to bring one family in need to your attention.

Sheila Ealey has become my wife’s best friend. Sheila Ealey has become one of my biggest heroes.

Sheila is the type of person it’s easy to love; she never lets adversity get the best of her. She hasn’t let Lupus get the best of her, although it breaks her heart that one of her daughters was recently diagnosed as having Lupus as well. Sheila’s husband, Ron, recently retired from the military, and planned to get a job in the corporate sector in New Orleans. Ron is the most likely candidate one could hope to find for an executive position; he has an M.B.A. and served as a District Comptroller for the Coast Guard. Unfortunately, the economy in New Orleans is such that Ron did not receive any offers, and the Ealeys have been living and trying to raise three kids, two of whom have special needs, on a military pension.

Like so many of us, Sheila and Ron have a son on the spectrum. Sheila faced this challenge as she faced every other challenge in her life. She decided to do something not just for her son, but for all autistic children. Sheila co-founded the Creative Learning Center, a special school with the specific goal of being able to completely transition autistic children into a mainstream environment at the earliest possible age.

Sheila, whose academic background is behavioral psychology, designed a program and curriculum to address the needs of the whole child, relying on teamwork between specially educated and trained teachers and aids working with qualified therapists, psychologists, physicians, and other professionals. The Creative Learning Center was to be one of only four schools in the nation to use the latest behavioral and play therapies, as well as autistic based language therapies. The therapies offered by the school were not the once-or-twice-a-week-if-you’re-lucky routine that we have all come to know with public schools. The children were to have intensive therapy, along with inclusion sessions with neurotypical children, every single day. Sheila struggled to raise funds, she found a host school with the local Catholic Archdiocese, and spent untold hours scrounging, painting, and getting ready.

The Creative Learning Center was to have had its first day of classes this past Monday. Around the same time the first bell was to have rung, Hurricane Katrina was blowing through. We don’t know if the building is still there; when last we heard it was under water.

Sheila and Ron have apparently lost their home. And Sheila worries that she has lost not only the physical site for her school, but also her dream of a school that would help her son and others like him.

This family needs a home. They need a job. Sheila needs help in getting her dream school up and going somewhere -- anywhere.

If you think you can help Sheila and Ron, email me (wsrank@bellsouth.net).