It’s Not my Fault This Issue Won’t Go Away. At Least, Not Only My Fault

Trigger warning: This post is about vaccines.

I start with a trigger warning because the post may affect you in either of two ways:

  1. You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage; or
  2. You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.

Better news: This post is not about whether vaccines are connected to autism. If you’re dying to know my opinion on that subject, click here.

This post is about perception of the vaccine issue and why, whatever the truth behind vaccine science, I think the tide will continue to turn against mandatory vaccination, at least until changes are made in drug approval, the liability scheme, and the way we discuss the whole matter.

“I Know Someone”

Let’s start with someone who likely falls within category 1, above—“You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage.” Earlier this year, in California for a doctor appointment, Martin and I decided to expend some energy at a trampoline park. We did not realize that we had happened upon a designated “special needs jump night.” The place was pretty empty, but apparently most of the kids who were there had some form of disability or sensory challenges.

Martin ran off to bounce. I sat on a bench with two other moms. They were discussing IEP’s and, soon, so was I. When one of the moms left, I continued chatting with the other. By then I knew that her four-year-old son was non-verbal and diagnosed ASD. She asked where we lived and what we were doing in California. I explained that my son had also been on the spectrum but now was getting better, and that we were in California to see the doctor who treats the medical aspects of my son’s condition.

That’s usually sufficient to end a conversation, or at least steer it in another direction. I find that ASD parents either reject biomed as impossible based on mainstream advice they’ve received, or else reject biomed because they are too overwhelmed even to consider dietary or lifestyle changes. Either way, they don’t jump to discuss. I thought this trampoline-place mom would fall into the second category; during the IEP portion of our conversation, she mentioned that she was a single parent, that her son’s father was entirely absent, and that she had trouble getting to IEP meetings and other school events. How could she want to add special diets and supplements to her agenda?

God bless her. I can’t fathom the strength needed to walk this path alone.

I was mistaken. She asked to hear more about what treatments we do, and about Martin’s diet. I tried to speak in gentle terms and be encouraging. As I was in the midst of saying that autism has an immune component, the mom interrupted me and blurted, “It was the shots, wasn’t it?”

I asked what she meant. She said, “Something happened to my boy. He got a bad fever after a shot and he wouldn’t stop crying. The doctor said it was normal, but my boy wasn’t the same after that. He didn’t talk anymore. And the doctor told me the shot didn’t hurt him, and that I had to keep giving him shots to stay in Medicaid, so I did, and I saw that he got worse every time.” With tears in her eyes, the woman looked at me and asked again, “It was the shots, wasn’t it?”

Readers, I was at a loss. I hadn’t said a word about vaccinations and did not expect the discussion to move in this direction. What could I say? From the few details the mom offered, it sounded like vaccine injury could be an issue—but no way would I share that suspicion with her. I felt like remorse and desperation had gathered themselves into human form and were sitting next to me.

The mom’s sudden response reminded me of a gym trainer I had two years ago. Training can involve a lot of chatting, and eventually we bumped into the topic of what I do for Martin, and his recovery process. “What do you think causes autism?” the trainer asked. I said genetics and environmental factors. He asked what environmental factors. I implicated unsafe food supply, overreliance on antibiotics, pesticides and pollution, disruption by electromagnetic fields, maybe a few others. The trainer asked, “What else?” I said Caesarian-section births weren’t doing us any favors. The trainer asked, “And what else?” I talked about sterile environments and lack of access to dirt and earth. The trainer asked, “And what else?” I relented and said, “Some people think vaccines are involved.” The trainer leaned close and whispered, “I know. I know all about it. My wife has a friend whose baby was injured. So my wife won’t let us vaccinate our kids.”

I know. I know all about it”—this came from a random 26-year-old suburban New York sports trainer who prides himself on “not reading too much.”

Why the vaccine debate won’t die, exhibit one: Too many people know someone they believe to be vaccine-injured.

“Nope. Forget it.”

On to someone who falls within category 2—“You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.”

This summer, I made a friend, an ex-pat North American already living a dozen years in Nicaragua. She knew about Martin’s challenges, at least his current challenges. (Think social awkwardness and emotional fragility, instead of screaming meltdowns and lack of functional language.) She knew that we follow a restrictive diet and have done various therapies. She did not know about the supplements, antimicrobials, enzymes, probiotics, mitochondrial support, homeopathy, neurofeedback, vision exercises, &c. Those details are reserved for the innermost circle of confidents. Still, I consider this ex-pat a reasonably close friend, and we speak openly with each other about the universe of matters not related to autism recovery.

One evening toward the end of summer, when Adrian already had returned to Nicaragua, he and I went out to dinner with this friend. The conversation was lively; Adrian is opinionated, and so is my friend. The talk turned to politics, and to subjects on which Adrian can see both sides of an issue versus subjects on which he sees no room for debate. (The dinner followed close upon a group of white nationalists parading clownishly around Charlottesville, which is I think how we arrived at the topic of “no room for debate.”) By way of intro, Adrian said something like, “You can debate a lot of things. How to stop global climate change, whether to pacify North Korea, late-term abortion, all the vaccinations—.”

Adrian mentioned vaccinations innocently, perhaps even Pollyannish-ly; his exposure to the topic comes mostly from his autism-obsessed wife, so he may just have been thinking, “Reasonable people can disagree on this one.” But upon the very mention of “all the vaccinations,” my friend exclaimed, “Nope! Not the anti-vaccination people. They are lunatics. [Expletive] lunatics.” No one had said anything about anti-vaccination. Adrian had suggested space for debate around the panoply of vaccinations currently recommended. My friend heard “vaccinations.” That sufficed to evoke immediate condemnation. No room, there, for debate.

Twenty years ago, one of my cats, Linsey, suffered a vaccine-induced fibrosarcoma. She developed a large tumor at the site of a rabies vaccination. I was a law student at the time. I paid for surgery to remove the tumor and then, having expended my savings, borrowed $5,000 from my brother Rudy and flew Linsey to Colorado State University in Fort Collins, where the Veterinary Teaching Hospital was one of the few institutions using electron-beam radiation therapy to prevent tumor return. (This was important because the Linsey’s tumor was adjacent to her lungs, so I didn’t want the radiation reaching beyond the tumor site.) After returning to Connecticut, where I was studying, I drove Linsey every few weeks to Angell Animal Medical Center in Boston for chemotherapy. Miraculously, Linsey survived this ordeal, only to succumb two-and-a-half years later to an unrelated carcinoma. Some cats have all the luck.

Throughout the entire course of these events, no one questioned that Linsey was vaccine-injured. The treating veterinarian, who first found the tumor, said immediately that it was vaccine-related: “I’ve seen a few of these, always at the site of injection.” I was asked to submit Linsey’s vaccination records to track the batch that had induced the tumor. Colorado State made her part of a study on treating these particular tumors. The doctor at Angell talked to me extensively about vaccine injury in cats and special precautions to take going forward. Five or six years after these treatments, long after Linsey had died, a researcher from Colorado State phoned me to track her outcome, for their records.

Of course, Linsey’s experience made me wary of vaccinating my cats. I asked a lot of questions, and veterinarians always took the time to discuss pros and cons with me, like whether exclusively indoor cats really need vaccines, the risks of vaccinating versus developing FeLV, or steps that had been taken to replace the adjuvants suspected in causing sarcomas like Linsey’s.

And when Martin came along, I tried to ask questions about vaccinating him, too. I attended presentations on vaccination, read books and articles. I formulated specific questions, like, “I looked up the contents of each brand of DTaP vaccine, and they all have at least 150 micrograms aluminum. One has more than 600 micrograms. I can’t locate any study indicating that those levels of aluminum injection are safe for a child of my son’s size. Have you seen any?”, or, “It’s hard to get statistics, but from what I have found, the rate of serious adverse reactions to the varicella vaccine might be higher than the chances of a serious reaction to the virus itself. Are we vaccinating in order to eliminate the virus in the general population, or are we seeking protection more particularized to my son?”

Martin’s pediatrician, to the extent she could, dismissed my questions without answer. Though she halfheartedly indulged my decision to do Martin’s vaccinations on a delayed schedule, she showed no interest in my reasoning or research. Instead, she served the usual banquet of platitudes: Vaccines are safe. Vaccine injury is a one-in-a-million occurrence. All theories linking vaccines to autism have been discredited. Until we started biomed, no one involved in Martin’s healthcare agreed to have a realistic conversation with me about vaccinations. A ten-minute conversation with my cat’s veterinarian over whether yearly rabies vaccines are worth the risk? No problem. Even a single disinterested, well-founded response to concerns about my own child? Wasn’t going to happen.

Why the vaccine debate won’t die, exhibit two: You’re not allowed to express a contrary opinion, or even a diversified opinion. You aren’t really allowed even to ask questions.

I Guess I Went to Law School for Some Reason.

In the United States, we have a (much-criticized, and sometimes justifiably so) system of tort law designed to shift resources among private parties in order to compensate victims of injury. If you are hurt—financially, physically, or otherwise—by a private party such as a corporation or a neighbor, you have a right to sue that party and ask to be “made whole.” Example: If your water heater explodes and you suffer burns, you can seek compensation from the company that sold the water heater, on the theory that the product never should have been put into commerce. Example: If your uncle drunkenly rams his car into your garage door, you can sue him for the cost of a new garage door.

In the late 1980s, vaccines were removed from this liability scheme. A law known as the National Childhood Vaccine Injury Act of 1986 established a National Vaccine Injury Compensation Program, or the “VICP.” (The citation is Pub. L. No. 99-660, 100 Stat. 3755 (1986), codified at 42 U.S.C. § 300aa-10 through -34.) Under the Act, the family of a vaccine-injured child no longer gets to proceed directly to a lawsuit (as would a person injured by, say, a pain medication or a statin). Instead, that family must file in the U.S. Court of Federal Claims, against the Secretary of the Department of Health and Human Services. Attorneys within the Office of Vaccine Litigation defend the Secretary.

After some 5,000 cases were filed under the Act seeking compensation for development of autism (this doesn’t surprise me) following vaccination, the Office of Special Masters within the VICP created an Omnibus Autism Proceeding, or “OAP.” The cases consolidated into the OAP ruled against the test-case families and held that vaccines cannot provoke the development of autism (nor does this surprise me).

A family dissatisfied by the outcome of a VICP proceeding may reject the determination and file thereafter in a federal court. In practice, a court is likely to accept a VICP determination of “no injury” as heavily persuasive, if not conclusive. Editorial note: I have no link to back up the foregoing statement about persuasiveness of VICP determinations in subsequent proceedings. The statement is based on my own years of legal practice in cases involving some form of prior adjudication, whether administrative or otherwise. Therefore, the possibility of litigating a court case to verdict and recovery barely exists. Moreover, as to the VICP itself, successful claims, as well as administrative costs of the program, are paid from a trust, which is funded not by vaccine manufacturers but by an excise tax for each dose sold of an included vaccine. Vaccine manufacturers are thereby insulated from just about any form of liability for injuries caused by their products.

Since the 1986 Act, the Centers for Disease Control has “recommended” ever-more vaccine doses. I use quotes around “recommended” because, in a growing number of states, failure to adhere to every recommendation precludes school attendance, military service, even some private-sector jobs. In the past five years, for example, California (with more than 12% of the nation’s population) eliminated personal-belief (including religious) exemptions from school vaccination requirements, joining West Virginia and Mississippi as states that don’t allow any non-medical exemptions. New York (with an additional 6% of the nation’s population) has been adding required vaccines for school, limiting the availability of medical exemptions, getting rid of personal-belief exemptions, and challenging religious exemptions.

The U.S. Department of Justice credits the VICP for virtual cessation of lawsuits against vaccine manufacturers:

A significant, positive result of the Program is that costly litigation against drug manufacturers and health care professionals who administer vaccines has virtually ceased. Although an individual who is dissatisfied with the Court’s final judgment can reject it and file a lawsuit in State or Federal court, very few lawsuits have been filed since the Program began. The supply of vaccines in the U.S. has stabilized, and the development of new vaccines has markedly increased.

Although I searched the CDC website (and the DOJ website, though it would be an odd location for such information), I found no mention of how we determine where, whether, or how many new vaccines are needed, or any gauge for evaluating the benefits of this marked increase in the development of new vaccines.

Why the vaccine debate won’t die, exhibit three: Instead of trusting families to make their own decisions regarding vaccination, our system forces them to vaccine, creating an overflow market for vaccine products while also absolving the manufacturers from liability if their products prove unsafe. The incentives are—I’ll speak technically here—out of whack.

Our Own Personal Proof?

After Martin was diagnosed with autism and I began to recognize his immune troubles, I fought to keep him in school without further vaccinations. I had his blood drawn for titer tests to establish that he did not need the second MMR shot required for school. Martin’s regular pediatrician wasn’t available, so another doctor from the practice met with me to review the results. A measles (rubeola) titer is considered immune if the IgG exceeds 0.70. Martin’s level was 1.25. A mumps antibody titer is considered immune if the IgG exceeds 0.50. Martin’s level was 3.57. A rubella antibody titer is considered immune if the IgG exceeds 10. Martin’s level was 67.2. Look again at those numbers. Martin’s titers, even without the required “booster” shot, were 179-714% of the levels that establish immunity. The first MMR shot had sent his immune system into a frenzied hyper-response. What would a second shot have done?

“Oh,” said the substitute doctor as he examined the results. “Ah. I think, if you want, um, I think, would you like me to write an exemption from vaccinations for the time being?”

Why, yes, I responded. Yes, that would be nice.

From that day until we moved out of New York City, the substitute doctor became Martin’s regular pediatrician.

Why the vaccine debate won’t die, exhibit four: I still have something to say about it.

Emerack Bitter

Last week Martin opened a restaurant.

He woke one morning and said that he was launching a restaurant and that in fact the grand opening would be that very evening, in his bedroom. I thought he might forget about this plan over the course of the day, but nope. After school and homework and taekwondo practice, and without even asking for his iPad (his usual request when the obligations are done), Martin scampered to his bedroom and shut the door. Half an hour later, when Adrian arrived from work, Martin reappeared in the kitchen and asked whether we’d like to attend the big event.

“Welcome to Emerack Bitter!” he said as we entered his room. Indeed, a handmade paper sign, propped against the hallway molding just outside the door, read “Emerack Bitter.” What a name!, I thought. Sounds like Brooklyn’s trendy new bourbon bar. “Panda is the host,” Martin continued, gesturing toward a stuffed panda bear perched on a cabinet. “Would you like to request a table? And here’s Bob, the owner. Maybe shake his hand and congratulate him?”

Adrian and I played along as Martin showed us the great turnout. Emerack Bitter’s eight tables were all occupied, with stuffed animals seated in groups, including its largest table, where six animals were eating. Opening night had entertainment, too: A mechanical bear in an Elvis costume, with a guitar. Beside Elvis Bear was a handmade sign instructing guests to “follow him on-line at http://www.ElvisBear.com.”

I ordered a smoothie, to Martin’s delight. He asked which fruits I would like, then pretended to load them into a blender, pretended to place the top on the blender, pretended to pulse the blender button, pretended to pour the mixture into a cup, pretended to add a straw, and finally pretended to hand me my smoothie before taking Adrian’s order.

If perhaps I am harping too much on the pretending aspect, it’s because Martin has never really engaged in this type of pretend play, never invited others to join him in an imaginary setting. I realized quickly that Martin was combining experiences he’d had in Nicaragua. We attended the grand opening of a friend’s restaurant, where we complimented the owner on the full house and enjoyed live entertainment, a signer/guitarist with (you guessed it?) a sign telling us to follow him on-line. Separately, every afternoon we purchased smoothies at a roadside stand, where Martin watched the proprietor write orders and load fruits into a blender.

Seven years ago, after we realized something was different about Martin, I filled out various questionnaires designed to help determine whether he was on the autism spectrum. Each one asked whether Martin engaged in pretend play or acted out imaginary scenarios. “Never,” I circled, time and again.

I understand that a child recovering from autism may “go back” and meet, on a delayed basis, typical developmental milestones that he missed along the way. I was excited to tell Martin’s psychologist about Emerack Bitter. She seemed pleased, too—although when I said, “I know that pretending like that is characteristic of a kindergartner, not a nine-year-old” she took some wind from my sails by replying, “More like a three-year-old.” She added that, in her office, Martin had recently created a scene of soldiers, including one lying belly-down and aiming a gun. Martin had said the gun was actually a camera, and that the soldier was using it to take a picture of another soldier he placed on a castle balcony. (Quite an assemblage of toys in the psychologist’s office!) This was new, the psychologist said, this ability to see from the soldier’s perspective and understand where his camera would be aimed.

Last weekend, at a softball game, I had a beautiful hit that cleared the centerfielder and sent her chasing the ball deep into the outfield. Unfortunately, as I rounded toward second, I missed touching first base. I had to go back to touch first base and continue from there. The fiasco converted my probable homerun into a triple instead. But in the end, it didn’t make any difference that I had to return to touch first base. The very next batter hit a solid line drive, and I crossed home plate, just a little later than I would have otherwise. No one cared. A run is a run.

After the grand opening of Martin’s restaurant (upon additional consideration?), he announced that the owners actually were Don Emerack and Dawn Bitter, and that they thought it was so funny that their first names were almost homonyms that they decided to combine their last names for the restaurant.

I think it’s a pretty cool name. Look for the next Emerack Bitter near you.

Mystery Abundant

This morning Martin had a light allergic reaction to his breakfast. About halfway through eating he started to rub his eyes, which were red and teary. When I asked whether his eyes were itching, he stammered, “No, they’re just being funny.” Then he sniffled and grabbed at his nose. It looked like his recent reaction to wild boar.

I happened to have photographed his breakfast before he started eating.

IMG_8502

The pancake-fritters had five ingredients (butternut squash, egg, cinnamon, nutmeg, and red palm oil) and were fried in rice bran oil. The smoothie contained coconut water, fresh mango and avocado, and frozen berries.

What on earth could have caused the allergy? My best guess is maybe the cast iron pan in which I fried the pancake-fritters. It’s a well-seasoned pan, and most likely it’s seen wild boar in the past month. That would be only trace amounts, I suppose. But nothing in the breakfast invites suspicion. Other than butternut squash and rice bran oil, Martin ate all the same ingredients yesterday, when I made sweet-potato waffles for breakfast.

I am disturbed by Martin’s increasingly frequent (and sometimes seemingly random, or at least unexpected) histamine reactions. For years, I told myself, “Autism is enough to deal with. Thank goodness he’s not also an allergy kid.” Understanding Martin’s health and immune system is maddening enough without constant new variations, thank you very much.

Meat Allergy, But Maybe No Alpha-Gal? Well, Good. I Should Be the Only Alpha-Gal for My Alpha-Kid

Back in January, I wrote about Martin reacting to beef. I speculated that his beef allergy was related to his Lyme disease, and specifically to Alpha-Gal (galactose-alpha-1,3-galactose), a sugar produced in the gut of the Lone Star tick (and possibly other ticks?) that can be transmitted to a human through a bite, causing the human to react to the Alpha-Gal also found in red meat.

The first time Martin showed allergy to any meat other than beef, we were at a restaurant in California. He ordered a bison patty. Before he’d eaten half, the rash appeared around his mouth and spread down his chin and onto his neck, all predominantly on the right side—exactly what happens when he eats beef. I summoned the manager and insisted that the staff must have substituted a beef patty for the bison, or cooked the bison on the same surface as beef. The manager was equally insistent that no such thing had happened. I’m glad I didn’t make too big a deal over the incident, because later, when Martin had the same reaction to bison carefully prepared at home, I realized what actually was going on: His allergy was no longer limited to beef. Since then, Martin has developed a rash after eating elk and venison, too. Most recently, twice, wild boar triggered a histamine reaction in the form of watery eyes and a runny, itchy nose.

Alpha-Gal allergies, which appear to originate exclusively or near-exclusively from tick bites, are increasing rapidly across the Eastern United States. The allergy was first identified in the Southeast. Since then, reports have arisen up the Midwest corridor and in the Northeast. Indeed, one of my meat purveyors, located in the Northeast, kindly sent me a list he’d developed of his products that do and do not contain Alpha-Gal. “We’re getting the question more and more,” he said. “Seems like a lot of people have the allergy, so I made this list.”

Nevertheless, for two reasons, I’m rethinking whether the Alpha-Gal carbohydrate in fact is triggering Martin’s allergy.

First, when he eats red meat, Martin develops a rash immediately. All studies and informational sites I’ve reviewed indicate that an Alpha-Gal allergic reaction to eating mammalian meat is a delayed reaction, typically manifesting three-to-six hours after ingestion.

(By contrast, an Alpha-Gal reaction tends to be immediate when the body encounters the carbohydrate through injection or infusion, as opposed to ingestion. For example, exposure to intravenous cetuximab, which is a monoclonal antibody specific to epidermal growth factor receptor (EGFR) and used in cancer treatment, has caused immediate reaction because it contains Alpha-Gal. And even without an allergy per se, Alpha-gal is the likely culprit when porcine bioprostheses, utilized in cardiac surgery, cause xenograft immune response.)

Second, Martin reacts differently to wild boar than to beef, bison, venison, or elk. The higher-myoglobin meats cause a rash—red blotches sometimes accompanied by raised patches—that doesn’t seem to cause Martin discomfort. Wild boar, however, makes his eyes water and then become puffy (most likely from his rubbing them), and makes his nose bother him. Since the Alpha-Gal carbohydrate is in the same form in all these meats (I think?), it seems counterintuitive that Martin’s reaction would vary.

So I am investigating whether Martin might have developed a meat allergy other than Alpha-Gal. The investigation has proved challenging, because I’ve found almost no information about meat allergies other than Alpha-Gal, other than statements that such allergies exist but are rare. There are tests advertised to detect meat allergy (I’ve never looked into them and express no opinion on whether they work). It seems that, if the Alpha-Gal carbohydrate is not to blame, then the person is probably reacting to specific proteins.

As to pork, and specifically Martin’s teary-eyed reaction to wild boar meat instead of higher-myoglobin meats, there is something called pork-cat syndrome. (Seriously. “Pork-cat syndrome.” I’m not making this up.) Persons with respiratory allergies to cat albumin (a protein made by the liver) may also demonstrate allergy to pork, given the structural similarities between cat and pig/boar albumin. Two years ago Martin developed a respiratory allergy to cats, though I’m not sure whether he reacts to cat albumin or to Fel d 1, which is the more common cat allergen. Maybe “pork-cat syndrome”—it’s hard for me even to type the name without laughing—explains the boar reaction.

Then there was the last day of school, in June. Here’s something I wrote in my July 4 post about medical cannabis:

On the last day of school we invited friends and classmates (both challenged and typically developing) to a pool party. I grilled burgers, beef for the guests and boar for Martin. I had a variety of burger buns on hand for the kids’ diets and allergies. I had no bun for Martin’s burger, because he has never had, or requested, a bun. This time, he did request a bun, and became agitated when I wasn’t able to produce one for him. I wanted to avoid a meltdown, especially in front of the typical classmates, so I let Martin eat an Udi’s® Gluten Free Classic Hamburger Bun. (According to the listed ingredients, these rolls contain resistant corn starch, cultured corn syrup solids, maltodextrin. I never would have given one to Martin under ordinary circumstances.) About ten minutes later, Martin was screaming and clawing at his torso. He’d had some sort of allergic reaction, to something. I pulled off his swim shirt and saw his midsection covered in red welts, with bumps emerging before my eyes. I shoved a spoonful of dye-free Benadryl into his mouth a tried to calm him.

. . . I had no idea whether Martin was reacting to the Udi’s roll; it could as likely have been residue from the beef burgers, or given that he was affected almost exclusively from waist to chest, some contaminant on his swim shirt or something he’d got into around the pool.

Now I’m wondering whether the culprit was the boar, plain and simple.

When I wrote the post in January about Martin’s beef allergy and the possible indictment of Alpha-Gal, I fretted that the allergy could spread from beef to other red meats. That’s happened. I’m on to worrying that if the allergy is something other than Alpha-Gal, it could spread beyond red meats to poultry as well.

Here’s another thing: I’m a long-time vegan who felt compelled to allow her son to eat meat in order to heal his digestive issues. Let’s spend a few minutes contemplating the irony of my son developing an apparent allergy to meat.

Ultima Actualización de Nicaragua: Diagnóstico

I still remember the first time I was asked if Martin had a diagnosis. That first time, it came as an indirect question. It was November 2010. Martin was two years and four months old. We had no official diagnosis, only my high-school friend’s assessment: “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.” Martin had stopped pointing and started posturing, squatting to crunch the pain in his gut. He’d also lost eye contact. He’d done more than lost eye contact. He was aggressively avoiding eye contact. Whenever he perceived a face near his, he thrust his eyes sideways.

“Yeah, what is that? Is something wrong?” A friend asked. Martin, bundled in winter gear and strapped almost immobile into a stroller, was still managing to turn his head, move his eyes, anything to avoid looking at her. Unprepared, I fumbled an answer, “Um, technically, I think some people might call it ‘high-functioning autism,’ but we’re still figuring things out. Probably it’s fine.”

Here is my last post on Nicaragua (this year, at least): I can’t remember, since November 2010, ever going two whole months without being asked, “Does he have a diagnosis?”

Thank you, Nicaraguans and ex-pats. Thank you for not caring about a diagnosis.

Actualización VI de Nicaragua: Un Projecto Comunidad

We’ve returned, reluctantly, to the States, and I’ve got some time to reflect on the Nicaraguan experience.

I think one reason that Martin felt so at home in Nicaragua—one reason that we felt so at home in Nicaragua—was that Martin seemed to become almost a community project, among both the ex-pats and the Nicaraguans with whom we interacted.

Martin loves to zip-line. We had two adventure parks near us. The first park created a “good-customer discount” for Martin: As long as someone accompanied him, Martin participated for free. The second park held a staff meeting and decided that because Martin is un niño nervioso—an “anxious boy”—he should receive 30% off all adventures, so he could build his confidence through outdoor activity. Martin’s favorite seafood restaurant served octopus with dairy-based garlic sauce. Martin loved the octopus, so the kitchen workers took it upon themselves to create an oil-based garlic sauce just for him. Waiters, gatekeepers, and cuidadors went out of their way to greet him. A local surf shop, owned by a German national, outfitted Martin with a collection of its beach wear, for free, on the basis that having a cool look would help Martin feel good about himself. We didn’t ask for these accommodations. They just happened, because, apparently, un niño nervioso needs a boost now and then.

And in Nicaragua there was never a question about whether Martin could accomplish something, just how to go about it best. I volunteered to send Samara to day camp with Martin, as a sort of helper/aide. Not necessary, the directors told me the first week; he was doing fine independently, they said, and Samara would coddle him too much in front of the other kids. “Would you let me teach your son to surf?” asked one of my coaches at the local gym, also a surf instructor. “If he can ski and skate, I know he can surf.” The third-and-fourth-grade teacher at the international school encouraged me to consider enrolling Martin there. She said, “My background is in special education. I know he’d fit right in, in my classroom.”

Once, when we were out to dinner, Martin asked permission to leave our table and eat with a half-Nicaraguan friend, Alejandro, and Alejandro’s American grandfather. (Martin had his iPad, and the boys decided to play Minecraft together.) The next day I encountered the grandfather and struck up a conversation. “You might have noticed Martin has some social challenges. I hope he and Alejandro weren’t too much of a handful at dinner.” The grandfather responded, “Oh, really? Funny. After your family left the restaurant, I said to Alejandro, ‘Did you see how Martin always extends his hand and introduces himself? You should learn to do that’.”

I was tickled pink.

Not that everything Nicaraguan was perfect. The day camp, with its week-to-week enrollment, had regular turnover, and the second week Martin experienced some pretty intense bullying. I witnessed it myself: At drop-off one morning, at the local park, Martin said hello to a group of five kids. One by one, those kids picked up their backpacks and moved to another area, without acknowledging Martin. Appearing confused, Martin followed them and said hello again. The oldest boy, without looking at Martin, said, “I see something really interesting over there. It’s a tree. I’m going to see the tree,” and left. The other kids promptly followed. Martin, realizing he’d been rejected, climbed onto a swing, alone. When two pick-ups arrived to shuttle the kids to the camp, these kids piled into one truck’s bed—safety advocates, I know! but when in Rome . . .—then blocked Martin from getting in, telling him that all the spots were reserved for their friends. I was standing nearby, so I said, “I don’t think you can reserve the spots. Let Martin sit.” A girl in the bullying group, about seven years old, looked me directly in the eye and said, “No, we can do whatever we want.” (I was taken aback. I don’t know any child who would speak that way to an adult, much less an adult who is a stranger to her! This girl, dear readers, was simply a brat.) I contacted the camp directors the same morning, and fortunately, they jumped on the situation immediately. By Friday afternoon, Martin was calling the bullying group’s ringleader “a kid who wasn’t kind to me at the beginning of the week but then got nicer.”

Taekwondo didn’t work out so well, either. Martin does taekwondo in the States. It’s a gentle program, with three or four instructors for the 45-minute classes and a series of ten belts, which are earned for learning sequences of kicks and punches. Taekwondo in Nicaragua, at the only dojang in town, was serious business: two-hour classes, one master for more than twenty students, four belts awarded at the master’s discretion, and sparring for everyone. Martin couldn’t follow and shied from kicking and being kicked; he’s not ready to spar. The master didn’t seem to understand when I explained Martin’s challenges and often seemed annoyed or frustrated with Martin. Halfway through the summer, when Martin asked if he could “maybe stop doing taekwondo until we get home,” I agreed.

Fortunately, isolated bullying and advanced taekwondo didn’t ruin an amazing summer, or the perception that our Nicaraguan community was rooting for Martin’s success. In the States, I have that perception from the autism-recovery community—but not much more widely.

Martin didn’t accept the offer for surf lessons, I should mention. He says he’ll try surfing next summer. Because we’re going back to Nicaragua next summer. Was there any doubt?

Actualización V de Nicaragua: Hoy Comienza un Año Mejor (Esperamos)

This is a follow-up to my last post, on Martin’s questions about Otto Warmbier.

More conversations have been happening. Last week, Martin initiated this dialogue with me:

Martin: “Mommy, even though the other kids made fun of me, I still think I had a pretty good year in school last year.”

Me: “You thought there was more good than bad in the school year?”

Martin: “Yes.”

Me: “How about this summer at camp? Did you feel like the kids at camp made fun of you, too?”

Martin: “Sometimes they did, but like less than at school.”

Me: “Was it a good summer at camp?”

Martin: “I think it was a good summer.”

Me: “I remember, when I was little, how sometimes kids made fun of me. I didn’t like that. It hurt my feelings.”

Martin: “When did they stop making fun of you?”

Me: “I would say things changed in high school. That’s when I found new friends, more like me, who had some more interests like mine.”

Martin: “High school?”

Me: “But you never know. It could get better every year. Third grade might be a lot better than second grade. You’ll have new kids in your class.”

Martin: “Yeah. I think third grade is probably going to be pretty good.”

Posted without additional commentary.