Actualización I de Nicaragua: La Ansiedad

As consistent FindingMyKid readers may know, I believe Martin’s primary challenge, these days, to be anxiety. Before I dive back into anxiety, here’s an abbreviated rundown of other challenges and where they stand now:

  • We have the rare night when he’s giggly and detox-y, or too anxious to drift off. By and large, however, Martin falls asleep within 20 minutes and wakes ten (or so) hours later.
  • Martin’s difficulties with social/pragmatic language persist, and his language processing lags; he might transpose “you” and “I” in a complicated sentence, or need a multi-step direction repeated. Other than that, Martin can read, hear, and speak at an age-appropriate level.
  • Energy and “floppiness.” Martin does get tired faster than other kids (thank you, mitochondrial dysfunction!), and when the energy runs out, he becomes clumsy, clingy, and sensory-seeking. This condition is improving and can, I find, be managed by alternating exercise and down-time.
  • As may be clear from the series of school bullying posts, Martin’s interest in playing with other kids has increased—it still isn’t very high, and I suspect he may always tend toward introversion (like I do)—but he has trouble figuring out how to go about becoming involved.
    • Example: In the house next to ours in Nicaragua are twin boys, maybe six or seven years old. We hear them playing in their pool constantly. Martin will creep to the edge of the yard and observe without making any effort to engage them, and he scampers inside when I suggest talking to the brothers. I mentioned this to Samara, who said, “I know. He does not like to be told to play. But I have noticed him getting closer to a few kids from camp.” His interactions are cautious and time-consuming.
  • Martin continues to perseverate, in the sense of “talking endlessly about what interests only him.” The perseveration has lessened from the days when he simply could not stop speaking. Now it’s more like memorizing city skylines and assuming everyone else wants to talk about them, too.
  • Repetitive behavior. As for physically repetitive behavior, occasionally Martin still jumps, or hops three times and runs one direction, then hops three times and runs back the other direction. The difference is that now he recognizes the behavior, and makes explanations, like, “I’m getting my jumps out so I’ll be able to stay still for taekwondo.”

All of that is pretty good—not to mention everything that’s so far gone I no longer think to add it to the list, like echolalia or bolting or lack of proprioceptive awareness.

But then there’s anxiety, the mountain so insurmountable that it’s driving me and Adrian to consider medical marijuana. For months, Martin has been clenching his fists, forcing his lower jaw forward, shouting, crying, opposite-talking (“I’m never using my iPad again! Throw it away! No, Mommy, don’t throw it away!”), and generally controlling our family time with his meltdowns (or threats thereof).

I’ve been hoping that moving to Nicaragua for a few months would alleviate Martin’s anxiety.

Three weeks into our summer, I’m pleased to report that I see progress.

We’ve had two very-high anxiety (and crabbiness) events. The first was July 4. We’d been in Nicaragua only three days. Adrian suggested a trip to Granada, a two-hour drive. Martin hated everything about the journey, couldn’t stop asking what we were doing and when we were going home, whimpered and whined through a boat tour on Lake Nicaragua.

After that, Martin did comparatively well until last Sunday, when he and I and a visiting friend made a day trip to Ometepe Island. Sunday morning was nothing short of a disaster. Even before we boarded the ferry at San Jorge, Martin sank into meltdown mode. The situation worsened when we arrived in Moyogalpa and found the driver we’d pre-arranged for an island tour. In the back seat, Martin lost control. He clenched his fists and jaw, lashed out at me, and screamed in English, “We’re never leaving Ometepe! Now we live here! Now we’ll be here forever!”—to the bewilderment of our driver, who spoke only Spanish. With effort, I got Martin calm enough to proceed through a butterfly sanctuary and then take a hike in the adjacent woods. Thank goodness we took that short hike. Something about the muddy path relaxed Martin. He went ahead of me and my friend (which I didn’t love, because we could hear Congo monkeys barking in the trees, and I had no idea whether they were dangerous) until he reached a clearing with a view of the lake. There he stopped and waited for us, and even posed for a couple pictures before declaring himself the “leader” and heading onward. Although Martin never got comfortable, the day improved from that clearing onward, at least until an arduous and uncomfortably overcrowded ferry ride back, which made him sensory-seeking.

 

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Martin, still unhappy as we headed into out post-butterfly hike.

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The view of Lake Nicaragua that seemed to mark a turning point in Martin’s awful day.

Those two events—Granada and Ometepe—notwithstanding, Martin has relaxed in Nicaragua. Somewhat. He’s still thrusting his lower jaw forward (if I can get him to chew gum, that helps) but not clenching his fists or complaining quite as much. He’s been speaking well to adults, even introducing himself. Day camp seems to be going well. We haven’t had many tears this week.

I’m noodling what might explain the limited improvement:

Limited social pressure. Without school, and especially until day camp started earlier this week, Martin didn’t have the same pressure to socialize.

Relaxed mom. We all know that I’m usually half the problem (if not more) when it comes to anxiety. With less on my agenda (I’m trying to cut down on work for the summer), and plenty of rest, I’m pretty chill.

Environment. There is activity afoot in Southwestern Nicaragua. But it’s nothing like the crowds and traffic and bustle of the Tri-State Area, even in the suburbs where we live.

Health. I don’t love Martin’s diet here. With less variety, he’s eating too many carbs (rice) and other sugars (fruits). On the other hand, I’m pleased with his regular ocean romps and exercise, including day camp, taekwondo, trekking, and pool swimming.

Biomed protocol. We continue treating Lyme disease and babesiosis, and we are ramping up the protocol Martin’s doctor set in June, which includes MC-Bab-2, Sida, and pau d’arco. Often we see improvement as we head into a new protocol.

We saw some anxiety this morning, as today was Martin’s first day-camp field trip—back to Granada, of all places! Stay tuned to FindingMyKid for additional Nicaraguan dispatches, including a follow-up on anxiety.

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This was the happier kid on the second half of our Ometepe hike. Later we had lunch and went swimming in volcanic mineral waters.

Aquí Estamos. Hasta Septiembre

You might want to take a look back at a post from September 2016 titled, “Martin in Paradise.” That post describes how well Martin did during a ten-day stay in Costa Rica, with a clean environment, limited wireless and electromagnetic fields, and daily access to salt-water swimming. The post ends this way: “I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life. Would I have that in me? Would Adrian?”

Just two days later I posted “Martin Out of Paradise,” which enumerates ways in which Martin crashed when we returned home from Costa Rica. That post ends this way: “Fact. I don’t know what to do with this information.”

Fast-forward ten months, to today. In my last post, I mentioned Nicaragua. In March, I described a conversation Martin and I had about being in Nicaragua.

This is getting obvious, so I will go ahead and say it: I’ve taken Martin to live in the Republic of Nicaragua.

Well, not permanently. We have flights booked back to the States for August 31, in time for Martin to start third grade. We are using this summer to discover whether we can reclaim that paradisiacal magic and kickstart his healthiest school year yet.

It would be cool to tell you that I have the courage to make a permanent change, to roam the world in search of the ideal dwelling place for Martin and then move, for good. Alas, I lack that abandonment. Our biomed journey is financed by Adrian’s job in New York City, and though Adrian is South American by origin, I am ’merican, through and through. I don’t see our family relocating.

At least, not yet.

Pausing for a shout-out to my friend Lakshmi. She and her husband recently sold their home in New Jersey, upended their lives, and returned to India with their two U.S.-born children, in search of a better environment for their son, Partha. I rarely feel alone when I witness what chances other parents will take to achieve full recovery.

But summer! Summer I can do. We’ve rented a house in the hills above the Pacific in Nicaragua’s south, not far from the Costa Rican border. Adrian accompanied us for the first week, to help us get settled. He left yesterday will return for the second half of August. Martin’s babysitter Samara is with us, too, for the whole summer. She’s switching roles to a sort of au pair so that I can work (and blog more!) and seems to be viewing the whole excursion as an adventure. Samara, like Adrian, is South American by origin, and she has never visited Central America.

You might be asking, Why Nicaragua? That’s a good question, given that I myself have never been to Nicaragua before now.

My interest in Nicaragua began last summer. Because we were having family members converging from Boston, California, Texas, and South America, the house we rented in Costa Rica was gigantic, and in a gated/resort community. The rental even came with a “house mother” assigned to keep the place clean and prepare rice and beans, pico de gallo, and guacamole for the vacationers. Contrary to the image “house mother” might conjure, our helper was a lovely young woman named Jasmina. In conversations in my broken Spanish—bless Jasmina for her patience—I learned that Jasmina was Nicaraguan and had left her small children in Nicaragua, with her mother, so that she could work in Costa Rica. When I asked why, Jasmina told me that she could earn much more money working in Costa Rica, even as a domestic.

“Tell me about Nicaragua,” I said.

It’s hard to earn money in Nicaragua, Jasmina told me. But for that, most products are less expensive. The best course is to earn in Costa Rica and spend in Nicaragua.

What is the climate like, and the terrain? Just like Costa Rica, she said. Jungle up to the beaches, which are rocky and sandy. A dry season and a wet season. Consistent temperatures.

Does Nicaragua receive many tourists, like Costa Rica? No. The tourism industry is just beginning.

Are there nice places to stay, and things to do like zip-lining and surfing? Oh, yes! Nicaragua has all those things!

So why are all the tourists in Costa Rica? What’s the big difference between Costa Rica and Nicaragua?

Jasmina didn’t know English, but she knew this word: She replied, “Marketing.”

This conversation stuck with me, when I decided to investigate moving Martin for a summer. Could it really be true that Nicaragua was a discount Costa Rica, perhaps with an even cleaner environment? I gave myself topics to investigate:

* Stability. When I told my mother that we planned to spend the summer in Nicaragua, exactly 14 seconds passed before Sandinistas came up. Memories of the Iran-Contra affair, and the Nicaraguan Revolution, still loom large in U.S. imaginations, my generation and older. In fact, the current elected government of Nicaragua is FSLN (Sandinista National Liberation Front), and I was able to satisfy myself that that nation is politically stable.

* Environment. I had heard that Nicaragua refused to sign the Paris Agreement, or Paris climate accord. (Before the United States’ withdrawal earlier this year, the only other non-signatory nations were Nicaragua and Syria.) Was Nicaragua seeking carte blanche rights to burn fossil fuels and contribute to global climate change? Hardly. I discovered that Nicaragua refused to sign the Paris Agreement in protest, arguing that the climate accord did not go far enough. Nicaragua already sources well more than 50% of its power from sustainable and renewable sources.

* Safety. The U.S. Department of State makes Nicaragua sound like a scary place, albeit mainly in Managua and the Caribbean coastal towns (which are more remote than the Pacific coast). Private websites, however, take a more measured approach and focus on Nicaragua’s recent strides, noting that high poverty levels (not going to deny them) don’t necessarily mean perilous conditions. In any event, I’ve traveled in developing areas before now, and I resided for a while in India before the economic boom, so I know basic precautions to exercise. I never walk with valuables unnecessarily; only what I need for an outing comes along. No fancy jewelry. No partying on the beach after sundown (as if). The house is always secured. And of course, Martin is never unattended.

* Food supply. Organic farming is on the rise in Nicaragua but far from dominant, or even widely available. Most of our food we can find grown locally and small-scale, reducing pesticide risk. Genetically modified food crops are extremely limited in Nicaragua.

* Illness and disease. Nicaragua is jungle, and tropical diseases are present. Then again, I walk around New York terrified of tick-borne illnesses—so, hey, six versus half a dozen. We came to Nicaragua armed with effective non-DEET mosquito deterrents, and we add clothing coverage when trekking, ziplining, or engaging in other activities in dense flora.

* Activities for Martin. I couldn’t expect Martin to do nothing all summer—boredom breeds iPad whining and pattern behaviors. Nor is Martin the type of kid to make new friends on the beach. Fortunately I was able to find a day camp that caters to both Nicaraguans and international kids. The camp has six week-long sessions, and I hope Martin will be able to attend each. Samara also found a local dojang where Martin can continue working on his taekwondo.

We’ve been a week, and Nicaragua hasn’t disappointed. I am still shopping “like a gringo,” i.e., buying too much at the (crappy!) local Palí, as I ask around to discover the best local markets and fish mongers. Martin has been in the ocean every day, whether just wading or floating for hours. He’s sleeping well and has that handsome sun-and-salt appearance. He had his first taekwondo class and managed to work the entire two hours, even though his class at home is only 45 minutes. Day camp is scheduled to begin next week. I’ve met with the director to explain some of Martin’s challenges. Fingers crossed!

As for Nicaragua itself, I could write chapters on what I’ve seen already, but I won’t. This is an autism recovery blog, not a travel-and-adventure blog, however much I might wish otherwise. Besides, everyone knows that my next career will be as a sports blogger for women.

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Look in the distance. See those white sticks? Those are wind turbines, dozens of wind turbines powering Nicaragua.

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Martin on one of our little jungle adventures.

Martin Out of Paradise

Fact: In Costa Rica, Martin slept beautifully. He requested sleepy-eyed early bedtimes, dozed promptly, rose only after 10 or 11 hours. To my knowledge, he woke during the night just once, when a thunderstorm lingered.

Fact: Since we’ve been home (one week), Martin has slept poorly. He lies awake for an hour or more, tosses or talks during the night, wakes too early. Some nights he’s had as little as eight hours’ rest, and poor quality. He’s been exercising plenty: swimming, bouncing at a birthday party, bike riding, chasing his cousin. He’s eaten better than he did in Costa Rica. He’s in familiar surroundings. He can’t sleep.

Fact: In Costa Rica, Martin’s attitude improved. He seemed carefree, less focused on fixations like his iPad and Mickey Mouse Clubhouse. He ate new foods. He walked home alone from a local bar/café.

Fact: Since we’ve been home, Martin’s attitude stinks. He’s been whiny, contradictory, and engaging in opposite-talking. (“I’m never going to use my iPad again! Throw it away!”) He’s grouchy. This morning he refused to try peanut butter on apple. He loves peanut butter. He likes apples. Apparently the idea of combining the two proved too much. An hour later he wandered away from his own bus stop.

Fact: I don’t know what to do with this information.

Martin in Paradise

For the last ten days we’ve been vacationing in Costa Rica. The “we” comprised me, Adrian, Martin, my mother and stepfather, my two older brothers, Adrian’s mother, and Adrian’s brother. Nine people. Nine people together in a house on the beach, off the beaten path.

I had trouble finding organic fruits and vegetables, and I suspect the papaya we ate may have been genetically modified. I used olive oil that was partially refined. The cookware was aluminum. Martin had seafood daily, mercury be damned. He ate way too much rice, probably too much fruit, and even homemade fruit juice. I found some locally made treats with oats, nuts, and raw agave, but I couldn’t get any intel on whether the oats were gluten-free. I gave Martin the treats anyway.

We ran out of several supplements, enzymes, and antimicrobials (poor planning on my part), including mucuna, serrapeptase, MitoSpectra, Nose & Lungs, cumanda, and Boluoke.

We had no set schedule, so Martin never knew what we might throw at him in a day. We didn’t do his vision exercises. His glasses sat abandoned, unworn.

We pushed his limits, sometimes over his protests. We took him zip-lining and horseback riding, made him a passenger on ATV’s and jet skis, insisted on swim lessons.

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.

In the face of these shortcomings and stress, Martin—soared. Martin’s had trouble sleeping these last couple months. In Costa Rica, he volunteered bedtime by 7:30 pm and slept 10 or 11 hours unbroken. His iPad requests, which at home are a near-constant whine, decreased markedly. On our few prior visits to beaches (I’m not a fan), Martin has refused to let the salt water rise above his knees. After a week in Costa Rica, he bobbed neck-deep as the ocean waves tossed him to and fro. Daily, he refused to leave the beach.

He conversed with his uncles and answered strangers’ questions. He used new expressions.

Overcoming recent food-choice rigidity, he rediscovered tropical fruits and ate mango, pineapple, and papaya with abandon.

Because we were without North American television, Martin could not watch his fixation of late, Mickey Mouse Clubhouse. He managed without complaint. Instead, he drew pictures.

One afternoon, Martin was at a local bar/café with Adrian, my brother Eddie, and my brother-in-law, Pancho. The establishment was about 300 yards from our house, past a swim pool, an exercise plot, and a several haciendas. I was in the house showering when Martin entered the bathroom and said casually, “Hi, Mommy. I came home alone.” I told him to scram—after all, I was showering—and his statement didn’t quite register until I was toweled and dressed and found a text message from Adrian: “Martin is coming home. Make sure the door is unlocked?” Adrian had indeed authorized Martin to walk home unaccompanied, and Martin had achieved the feat, without getting lost or wandering off.

Just sayin’, I would not have let Martin walk home alone. But Adrian did, and out of the decision came some measure of independence.

I’m not saying that 10 days in Costa Rica brought a miraculously fully recovered Martin. Not by a long shot. He was too distracted to get the full benefit of those swim lessons. The pictures he drew were all of marching bands or orchestras. (He used to draw only pictures of The Beatles. Now he draws only marching bands and orchestras.) He engaged in a lot of oral stimming: “mouth noises,” I call the sucking-and-clucking sound he makes. He showed virtually no interest in the other kids scampering and riding bicycles in the neighborhood. Our last full day in Costa Rica was a bad day; sneezing and maybe teetering on sickness, he requested another round of zip-lining but then melted down and refused to participate. He repeated himself, nervously. He spaced out.

Still, overall, Costa Rica brought us a behaviorally improved Martin. Indisputably.

I don’t know what made the difference. Sea water? Clean air? Reduced EMF’s and cellular radiation? Extended family? Time to be a kid?

We’re on the plane now, headed home to the New York metropolitan area. (You know how I love to airplane-blog.) Martin just told me he wants to watch Mickey’s Clubhouse, when it’s on at home. I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life.

Would I have that in me? Would Adrian?

New Year!: We Met One of Adrian’s Colleagues for a Drink

New Year’s Eve, for our après ski, we met one of Adrian’s colleagues at a distillery. This particular colleague, like most, doesn’t know our son has autism, and whereas the colleague has typically developing children in the same age range, he would be able to spot any differences. We didn’t want Martin to “stand out.”

One way Martin still stands out is ordering food. When we are in a restaurant, he likes to order by himself. That’s fine, if we are in a restaurant whose menu we already know. When we are in a new restaurant, I have to ask eight million questions. The hamburger—is that just ground beef, or is the beef mixed with bread crumbs? The sweet potato fries—do they have any breading or coating? What kind of oil are they fried in? What else is fried in that oil? The grilled calamari—could we get that without the garlic butter? And the whole time I’m asking, Martin interrupts, usually to yell what he wants: No, no! I can get the calamari! Can I get the calamari? I don’t want salad! Occasionally he also has a mini-meltdown over what’s available (or not available) for him to eat, in which case I take his hand and lead him outside until he calms down.

So we were glad to arrive twenty minutes before Adrian’s colleague, have a chance to peruse the menu (the colleague suggested the location), and come up with the best option, both nutritionally and in terms of avoiding a meltdown. By the time the colleague joined us, Martin was occupied with my iPhone while happily downing a grass-fed steak and French fries cooked in canola oil.

Wait. Potatoes? Canola oil? Do we allow Martin to eat potatoes and canola oil?

Generally speaking, we do not. Potatoes are an occasional summertime treat, organic and roasted on our outdoor grill. Canola oil almost never works. Most canola oil comes from genetically modified crops, and even non-GMO “Canadian oil” is refined (hexane-processed?), bleached, degummed, deodorized rapeseed oil in which omega-3 fatty acids have been turned into trans fatty acids. Why would I let Martin ingest that?

Well, because we were traveling, and when we travel, and encounter new situations, and have to “perform,” some restrictions loosen. A bit.

Traveling, depending on where we go (for example, I can do more at my parents’ in Texas than I can in a suite in Chicago), alters:

  • Diet, to a modest extent. Martin’s diet is always free of gluten, dairy, soy, corn, and refined sugar. Beyond that, some specifics slip, including the aforementioned potatoes and canola. It can be hard to ensure organic food, or even non-GMO. He might also miss a day or two of broth. We traveled to Utah on a Saturday. He went without bone broth Saturday, Sunday, and Monday. By Monday afternoon I’d got my hands on a marrow bone and simmered a pot of broth.
  • Cookware. Even at home, my cookware isn’t perfect. Stainless steel remains puzzling, in terms of purity, and I’m never sure if my cast iron is seasoned properly or clean. In any event, at home I cook with All-Clad and cast iron, with mostly stainless-steel or wooden utensils. Whenever we travel, we rent accommodations with a kitchen, and unless we are staying long enough to justify a purchase—for example, when we were in Europe for ten days and I bought a fine strainer and a pot, both of which I brought home—I use what comes with the place. That might mean a plastic spatula, or even, egads!, nonstick pans.
  • Detox baths. At home, Martin takes two or three detox baths (two cups Epsom salt and one-half cup baking soda) a week, depending on whether he’s also used the sauna. Epsom salt is heavy to carry, and I don’t always trust other bathtubs. What product was used to cleaned it? Could I rinse it well enough? There is no point in trying to detox Martin in a tub with excessive chemical residue.
  • Exercises. Right now, we don’t have HANDLE exercises to do. Martin does, however, have four short exercises per day for his vision/neuroplasticity. At least, he has four short exercises when we are not on the road.

We do have absolutes, stuff that doesn’t change, regardless of where or when we travel. Martin takes his supplements, always. I’ve handed him pills in rental cars, measured drops at airport gates, mixed powder into restaurant beverages. I also find him fermented foods, daily, wherever we are. Martin no longer takes probiotics, so fermented foods are his probiotics. Plus, it’s easy enough to find sauerkraut or another cultured vegetable these days, if not kombucha.

The last absolutes? Love, and plenty of attention. Martin always gets those.

A&A Part III: Mold, or How Far Do We Go?

We had the whole house checked, top to bottom, for issues and possible allergens after Martin started having these reactions. Overall, our house is doing pretty well. Mold in the air is low. Mold in dust samples (dust? what dust?) is normal-to-low. Mycotoxin sample shows barely perceptible positive for tricothecenes. Total VOC air sample is ideal, and mold VOC air sample is low.

The consultant did notice “some mold on the floor joists in the basement,” which he speculates is leftover from before we bought the house. It does not appear to be affected air quality or spreading.

So here’s the question: How far do we go? Before we moved into the house, a couple years ago, we had basement mold remediated. That mold had a clear source; the previous owner had left a ground-level basement window open during Superstorm Sandy—evidently she thought the basement would be better with “circulation”—and water poured through the window, leaving ickiness in its wake. Remediating that mess was like those scenes at the end of E.T.: The Extra-Terrestrial. You know, when scientists and government officials are obscured in protective gear, and plastic sheets cover everything. That was how our house looked, to annihilate the Sandy mold. You can imagine the cost.

Do we do that again now, to go after some petty bit in floor joists not affecting air quality? Not at this moment, no. I’m going to put that mold onto the “monitor” list instead. Autism recovery, however you approach it, can be a highway to the poorhouse. Chasing after a bit of mold, right now, seems like a voluntary move into the fast lane on that highway.

Martin, as Donald Duck, trick-or-treating with friend.

Martin, as Donald Duck, trick-or-treating with friend.