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.

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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.

Actualización IV de Nicaragua: Korea del Norte

Martin’s new thing is to request “a little chat” before he goes to sleep. “Mommy, can we have our little chat? Then can you send Daddy in for a little chat?” Participating in the little chat requires me to climb into bed and lie next to him as he answers questions about his day, talks about what’s to come, and then requests a nighttime assurance of how much I love him. “Do you see the ceiling fan, how it spins?” I say, or something similar. “Imagine how many times it would spin in a million years. Put that number with every drop of water in the Pacific ocean. You can add in the Atlantic and the Indian oceans, too. Those spiders in the jungle? All the spiders in all the jungles, and all the legs on all the spiders and all the tiny hairs on all the spiders’ legs. Add that all together, and still I love you more.”

The nighttime chat also the time when Martin’s fears and anxieties bubble up—who’s been unkind to him, what he doesn’t want to do. I’m pleased to report that, since we came to Nicaragua, the fears and anxieties have been fewer and farther between.

Since we are living abroad, one topic we discuss frequently, both in our nighttime chats and otherwise, is geography and geopolitical concerns. Martin has memorized the seven nations of Central America by size, both area and population, along with their capitals and order from the Mexican border to the Columbian. He asked if we could make an excursion to Honduras, and I said no because I consider Honduras too dangerous. This got him interested in “dangerous countries.” I tried to explain other nations where I would not travel at this time, and why: South Sudan because of civil war, for example, or Syria because of domestic conflict, Venezuela because of mistaken government policies and newfound resource scarcity, North Korea because of an oppressive regime.

I wasn’t too surprised, therefore, when Martin began one night’s little chat by asking, “Do you know something funny about North Korea?” and then informed me that “a kid at camp” had told him a story about North Korea. I was instantly suspicious. Martin likes to make things up and claim he heard them from someone. Which kid? I asked. A new girl who’s older than he is and whose name he doesn’t know, he replied. Hmmmm. Okay. What was the story?

Martin proceeded to tell me that there was an American boy who tried to take a poster he wasn’t supposed to take in North Korea, and so just because of the poster the North Koreans punched him in the head so hard that he went to sleep for two years, and when he woke up from being asleep for two years, he died and it was very sad.

As Martin rambled, relaying the tale the nameless older girl had given him, I realized that this wasn’t made up at all. He was giving me the basics of the fate of Otto Warmbier, the University of Virginia student arrested January 2016 in North Korea for allegedly stealing a political poster from a restricted floor in his hotel. Plainly, Martin actually had been told this story, and accurately was repeating to me what he’d been told.

Martin concluded by asking me whether this North Korean tale really had happened.

I’ve never before witnessed this level of engagement from Martin. It hasn’t been so long since I was overjoyed when Martin became able to tell me whether his sneakers were at school. This North Korea discussion was so far beyond answering basic questions. Martin must have been talking to this girl at camp, listening to what she said, and comprehending the information. He retained the story basics and sought confirmation at home. He initiated the conversation with me.

I didn’t bother correcting any details, like whether we know punches to the head caused Warmbier’s death, or that he was detained 18 months instead of two years. I said, “That terrible story is true. Those things happened to a young American man who was visiting North Korea.”

“What was his name?” Martin asked.

“Otto Warmbier. He was a student at the University of Virginia.”

“When did he die?”

“I can’t remember. It must have been a couple months ago now.”

“I think he died the first week I had camp.”

“You might be right.”

“It’s very sad.”

I could see Martin becoming anxious, so I said, “It is very sad. North Korea is a dangerous place. But do you know what? Nicaragua is not. You are safe here in your bed. Abuela is sleeping in the same room, and who else is in the house? Samara is here, and I am here, and Daddy is here. And who’s outside? Señor Pedro is outside. You are safe.”

Señor Pedro is our house’s cuidador (the caretaker or nighttime guard), who has a room in the garden. Martin loves Señor Pedro.

Once Martin was reassured and asleep, I went on-line to check when Otto Warmbier died. June 19. Martin started camp Monday, July 17, so no. He was off by a month. I don’t know whether the girl at camp told him Warmbier had died the first week of camp, or whether somewhere in the background of his extraordinary memory was a snippet of news he’d heard/seen and mistaken the date.

But I do know this: I am a closer than ever to knowing how it feels to converse typically with my son.