Hives

Martin is allergic to horses. He didn’t always present as allergic to horses. When he was four and five years old, he did hippotherapy weekly, without problems. When he was eight years old, on a visit to Costa Rica, we went horseback riding on the beach: Martin, Adrian, my brother-in-law Pancho, and I. We rode for an hour. I was second in line; Martin, wearing shorts and a small t-shirt, was third. Every few minutes I turned around to glance at him, make sure he was still riding comfortably. I saw no issues. But when we arrived back at the stables, and I was able to see Martin up close, I could see that he was covered in a red rash. Rashed on his arms. Rashed on his legs and, I soon discovered, on his chest and belly. Most of all, rashed on his face, which was red and bumpy. “What’s wrong with me?” he exclaimed and burst out crying. I checked his breathing (it was okay), took him back to our rental house, and put him in the shower. With good scrubbing and an antihistamine, the rash dissipated.

After the Costa Rica experience, I asked Martin’s allergist—a mainstream doctor, not focused on ASD—to test Martin for a reaction to horses. The doctor agreed, though he had to order a special skin test. When it was finally available and administered, the test left no doubt: Martin’s forearm immediately swelled into a red bump. No more horses.

On that same Costa Rica trip (August 2016), we discovered Martin had become allergic to red meat.Sixteen months earlier, in February 2015, in South America, Martin was eating beef with roast potatoes when a red rash formed around his mouth.(That trip, however, he’d ridden horses with his cousins, no problem.) Still I didn’t realize that red meat, which he rarely ate, was the issue; of the Costa Rica trip, I wrote: “He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.” Subsequently I put the pieces together and stopped letting Martin eat beef—but it would be more time yet before I figured out that all red meats were problematic, not just beef. (That discovery, in a “bison incident,” is described here.)

This summer, in Costa Rica again, Martin’s day camp was having an activity in which the kids rode horses to a remote waterfall. I wondered: The allergy came on when Martin was already six (or seven? or eight?) years old. Does he still have it? These Johnny-come-lately allergies—do they stick around? I wanted Martin to be able to participate in the horseback-riding activity, and not to experience one more factor differentiating him from other kids.

So I acted recklessly. (Maybe?) I told the camp director that Martin is allergic to horses. I told her about Martin’s reaction two years earlier, also in Costa Rica. I said I was going to dress Martin in long sleeves, long pants, and high socks, and send him to camp. I asked her to let Martin give the activity a try and see what happened. I reminded her that Martin always carries antihistamine in his backpack, just in case.

Mid-morning, I received a message from the camp director. Martin had only been on the horse a few minutes when he got a terrible rash. She took him off the horse immediately and administered his antihistamine. The reaction was severe enough that she also took him directly to a shower to wash. Thankfully, he was better within a short time.

That’s that. Martin has become allergic to horses, possibly permanently, just as he has become allergic to cats and dogs and has become allergic to red meat.

I am, of course, back to pondering why Martin has developed allergies as he continues to heal. I still think the most likely explanation is that he had these allergies (with the possible exception of red meat, which may or may not be related to Lyme disease) all along, but previously his immune system was neither strong nor responsive enough to mount the proper response. Whereas allergies themselves represent flaws in immune function, perhaps one day Martin’s full recovery will mean the allergies dissipate along with the remaining vestiges of autism.

Today, let’s not dwell on the allergies, and what they might mean. Instead, let’s focus on this: According to the camp director in Costa Rica, Martin didn’t freak out, not even when he was covered in a rash and pulled away from the other kids. She said he was upset for a minute or two, then calmed down. Two weeks later, when the activity again was horseback riding, I offered Martin a choice: He could go to camp and play games or surf while the other kids rode (the director had offered this alternative), or he could take the day off and go to the beach with Uncle Eddie. Martin contemplated for a while, then chose to take the day off. It seemed like a reasonable choice, and it wasn’t a big deal.

Because now, not everything has to be a big deal.

Otra vez, aquí estamos. Hasta Septiembre

We are back in Central America. Alas, not in Nicaragua, el país más bonito de mi corazón. We planned to return to Nicaragua this summer, and held fast to that plan as long as we could. During June, however, the political violence reached as far south as where we stayed last year, in the Department of Rivas; north of Rivas city, a young man was killed defending a tranque against pro-government forces. Shortly thereafter, the director of Martin’s day camp (and one of Martin’s Nicaragua-based cheerleaders-in-chief) notified me that they would likely not have enough kids to run camp this year. At that point, we canceled our summer house rental, sent part of the deposit to a trusted friend in Rivas to distribute among local families most in need, and hastily assembled a new summer.

This is of course an autism-recovery blog, not a political blog, and I am no expert on Central American politics. I will limit my comments about the Nicaraguan situation to this: Daniel Ortega is unleashing this violence upon the very families who, a generation ago, fought for the right to elect him. The people of Nicaragua don’t deserve these troubles. Please look for ways to support Nicaraguan self-determination.

So Martin and I find ourselves on the other side of a border, in Guanacaste, Costa Rica (with hopes to cross, later, into Nicaragua at Peñas Blancas and visit our friends there). You may recall that Costa Rica was where I first noticed how well Martin does in the Central American environment. Even as we mourn our time in Nicaragua, I am grateful to be here: grateful that we were able to rent a house on short notice, grateful that I found a community with a day camp, grateful for daily saltwater swims and abundant  sunshine. This area is populated by gringos here temporarily, chasing the pura vida, and I don’t have much hope of finding the same kind of lasting connections we made in Nicaragua, where the gringos tend to be long-term ex-pat residents. No worries, though. Everything else is grand.

Martin started day camp last week. I had corresponded in advance with the camp director about Martin’s food and environmental allergies. (When you’re talking about Central American activities, “allergic to horses” becomes surprisingly relevant.) The tougher conversation, about Martin’s real challenges, I left to have in-person; giving advance notice, in writing, of Martin’s social and attention deficits tends to create an image that can be hard to shake, even after Martin himself appears. I remember still the remark of a German relative, years ago, when she first met Martin: “Als ich das Wort gehört habe—Autismus—habe ich mir was ganz anders vorgestellt”: “When I heard that word—autism—I imagined something else entirely.” We no longer have the A word to fear, but preconceptions nonetheless pose dangers. The first day of camp, I stole the director for a few minutes. I said that Martin had some previous language delays, and because he is still catching up, he struggles with social interactions. He wouldn’t give them any trouble about participating, I explained, but we do worry about bullying and hope they will keep an eye out for that.

“That will be no problem,” the director replied. “We’ve had all kinds of kids at camp. Even kids with autism.”

“Oh!” I said. “If you’ve had kids with autism, you can certainly handle Martin. It’s nothing like that.”

Darling Little Obsessions

At 8:30 Sunday morning, Martin was having a mini-meltdown. He danced awkwardly through the kitchen and family room, yelling, “No alterations! No, never! Mommy, is Daddy right? Can he make alterations? No, it’s thee scoops!”

The morning tantrum was prompted by sorbet. We planned to eat dinner at a restaurant Sunday evening. Nine hours before the event, Martin was already fixated on getting three scoops of sorbet. A sorbet order, he claimed, is three scoops. Last visit to the restaurant Adrian had “altered” the order and asked for Martin to receive just one. When Martin, at Sunday breakfast, demanded to know whether Adrian planned to alter that evening’s order, Adrian replied that Martin could ask for half-scoops of two different flavors, but it was better if he ate only one scoop total. And then Martin freaked.

Martin has two obsessions these days: food and iPad.

The food obsession worries me more, because (1) as opposed to an iPad fixation, food fixation is less common; and (2) its cause, at least in part, is the diet we follow for recovery. Martin is allergic to dairy and to red meat. He hasn’t had gluten in more than seven years. We avoid soy. Other than those restrictions, I currently let just about everything else slide when we are dining out, within reason. Martin is now wise enough to pin me down on these restrictions: “I can have anything but dairy and gluten, right?” “How much sugar can I have?” “Does gluten-free pasta have sugar? How much?” “Are French fries a treat?” He’s developed a give-me-an-inch-and-I-will-take-a-light-year approach to pushing boundaries. I made the mistake, last year, in an effort to harmonize a Sunday dinner, of allowing Martin to order a dish of sorbet for dessert. Martin immediately placed sorbet into his foods-I-can-eat column and fixated on whether sorbet is a “treat,” i.e., something he gets only in limited quantities versus something he can eat whenever. Fast forward to today: Within five minutes of awakening, routinely, he’s asking about whether and when he will get sorbet that day, the first of may food questions.

I overcompensate. I reason that the less Martin feels left out, the less he will fixate. The freezer in the school nurse’s office is stocked with GFCF cupcakes, donuts, and ice cream, in case of classroom party or event. Every Tuesday afternoon Martin shows up to church with a snack more desirable than the pretzels and cookies the others receive. I always keep supplies to conjure a GFCF pizza, on a moment’s notice. Sunday evening, at the restaurant, Adrian ordered key lime pie for dessert. (Adrian and I allow ourselves dessert only if Martin has an equally appealing option. He had his sorbet.) “What’s that? Can I eat that? Does it have gluten or dairy?” Martin asked, when the pie arrived. I replied, “That’s called key lime pie. This one has dairy, but would you like to try key lime pie that you can eat?” He said yes. I promptly rearranged my Monday afternoon schedule so that I could take two hours to prepare GFCF key lime pie. The policy letter I was engaged to write for work would have to wait. Like I said, I overcompensate.

Then there’s the iPad. Weekdays, Martin gets 30 minutes of iPad time, after homework is complete, and dammit, he’s going to make sure he gets that time. Weekends are tougher still. I try to limit the iPad to 60 minutes, but that means occupying him the remaining 12 hours he’s awake. Yes, of course I know that I’m supposed to let him be bored so that he’ll find creative ways to occupy himself. Thus far, however, the only way he’s found to occupy himself is to beg for the iPad and stage a tantrum if his wish goes unfulfilled.

I admire parents who draw the line and curb obsessive behavior by getting rid of the iPad altogether. I’m unwilling to follow their example, for two reasons. First, admittedly, I fear the weeks of meltdown and the impact on my life, which already lacks enough hours to accomplish my goals. There could be no trial period in an action like iPad removal; if we said we were getting the rid of the iPad but eventually relented and returned the device, Martin would never respect a parental decision again. Second, paradoxically, screen time is one way that Martin is able to connect to other kids. He’s made a couple school friends through Minecraft, and other games like Subway Surfers give him ready conversation topics when he finds a fellow player. He also uses the iPad to send messages to his cousin and to his uncle. I’ve decided I am okay with him having the device, with time limits. I do wish the iPad weren’t always on his mind whenever it’s not in his hands.

Martin got his three scoops of sorbet, Sunday evening. While Martin was visiting the bathroom, Adrian asked our server please to tell Martin that an order of sorbet comprises one scoop only. The server did that. Then he added: “And you, young man, may have as many orders as you’d like!” At that point, our dilemma was three scoops sorbet, or an in-restaurant meltdown (which would have been highly unusual, but Martin was having one heckuva bad day). We went with three scoops.

Then Martin accidentally broke a glass, and melted down anyway.

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The Remains of the D…essert. The recipe called for coconut cream, which I didn’t have. I substituted coconut butter, and the topping came out less smooth and more chunky. Nevertheless, my GFCF key lime pie was a hit.

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.