Take Heart. There Is Also More Than I Can Manage

It’s been seven years since we began biomedical interventions aimed at recovering Martin from autism, and though I always wish wellness would hurry up and get here, overall I am pleased with our success. Last semester we had a CSE meeting with our school district and, at our request, reduced the special-education services Martin receives. With newfound social awareness, Martin has grown resistant to being pulled so often from his mainstream classroom. We decided that we can still meet his needs even without physical therapy (taekwondo helps) or resource room (we’ve hired a reading tutor instead), and we’re cutting speech therapy from three sessions per week to two. Outside of school, Martin recently had a successful play date with typically developing twins, albeit 17 months younger than he is. Progress, progress.

How have we reached this point? Through utter, over-the-top lunacy. By my leaving my law-firm job to work on Martin’s recovery. By moving out of New York City, and into a house adjusted to meet his needs, from electromagnetic-shielding to environmentally sensitive paint. Through a variety of specialty and highly restricted diets, all home-prepared and as organic as possible. With homeopathy and, early on, homotoxicology. Through large medical bills (on top of pushing the limits of our insurance) for a team of MAPS(-ish) practitioners, an LLMD, geneticists, traditional and nontraditional allergists, developmental optometrist, neurofeedback practitioner, HBOT therapist. By insulating Martin from the commonplace, like fluoride, chlorine, harsh cleaning agents. On the non-biomed side, through special-education settings, hippotherapy, social-skills playgroups, a psychologist. And of course, by summer relocation to Nicaragua.

From the beginning, I have had to acknowledge the privilege inherent in what I can do for Martin. We are a two-parent family with one child. Adrian’s income as a law-firm partner made it possible for me to stop working and focus on Martin, and for us nevertheless to cover the expense of biomed. We live in an area rich with resources. Adrian himself believes in the biomedical approach. While he may select restaurants without enough regard for Martin’s restrictions, or plan trips that make it difficult to adhere to our supplementation routine &c., he never questions my research or seeks to undermine.

What we do for Martin appears extreme, to a good many folks, and that’s okay. It is extreme. I’ve always said I would do anything necessary for Martin’s recovery.

Yet, more and more often, I encounter parents who do more than I do.

Example: Parents who homeschool. That’s not happening for us. I love Martin and cherish our time together, enough so that—other than cooking—I get nothing done when we’re together. I need the six-hour break when he’s in school. I need the time to work, to shop, to research, to order supplements, to breathe.

Example: Parents who truly master the science behind medical challenges and recovery. When my family makes a big decision like medical marijuana, I try to do a lot of research. I read summaries and abstracts and, where necessary, delve into scholarly articles—which is tough. I’m no good at the science component. I’m forever amazed by parents who seem able to answer extremely complicated questions of physiology or neurology at the drop of a hat. Perhaps they were doctors in their pre-autism lives. Or perhaps they just managed to complete something more impressive than “Chemistry for Non-Science Majors,” which was the class through which I fulfilled my core science requirement in college.

Caveat: One could argue that anything biomedical we do with Martin is a “big decision,” because anything has the potential to affect his health short- or long-term. True. On the other hand, my anxiety is satisfied with comparatively less investigation when it comes to, say, Vitamin C supplementation than when it comes to, say, chelation.

Caveat: There are also plenty of parents in my on-line groups who, even to my weak eye, get science and even basic facts wrong. I wasted time one evening explaining why the statement “All soy contains GMO estrogen” was untrue (in varying ways). Another occasion, I spent hours trying to track down the source of a statistic about MTHFR mutation and autism that was being thrown around as gospel. I failed, even after looking through all eight articles in the medical journal to which the statistic was vaguely attributed.

The core point is this: In the event anyone feels disheartened because s/he can’t manage what we do for Martin, know that I too become disheartened by what others manage that I cannot.

Martin needs more detox support. For detox support, he takes a few herbal remedies, does a detox bath (two cups Epsom salt, half a cup baking soda, and essential oils) several times per week, and when we have time, sweats in our infrared sauna. But he needs more. I can tell because he becomes silly and inattentive (behavior I associate with detoxing) at certain times each day, usually when his antimicrobials are taking effect. So I went searching for a supplemental detox protocol and found a post, from the excellent blog Regarding Caroline, titled, “DETOX the Die-off and feel amazing again! [our roadmap to success].”

Call up the post, if you have a minute. Read through, past the various strategies of castor oil packs, dry brushing, &c., down to that part subtitled Our Daily Detox Routine. It’s amazing! Herx water and lymph drainage massage before breakfast, cytokine and lymphatic supplements mid-morning and early afternoon, foot bath during dinner, dry brushing before shower, more lymph drainage massage in bed, so on, so forth. Martin would undoubtedly benefit from that type of detox routine. So much detox might eliminate silliness altogether, which would help so much with social skills; just this afternoon, Martin said to me, “I know I shouldn’t laugh at jokes from inside my head when I’m with friends. I can’t calm my body and control the laughing!”

So Martin needs a routine like that.

But—

But I—

I came away from this post feeling, I imagine, the way an autism-recovery newbie might feel after some time on Finding My Kid: What? How? How could I possibly do all that—do anything close to that—on top of the day-to-day grind I already endure? Martin attends school; we’ve established that. He has at least two activities after school every day, which include taekwondo practice, music lessons, psychologist appointments, social-skills playgroup, reading tutor. Then there’s homework (which still takes inordinately long, given his attention issues), trombone and drum practice, (now) chess practice, half an hour of iPad time (as a reward for completing everything else I just mentioned), dinner, two snacks, and school-mandated 20 minutes of reading before bedtime. We do his pills and drops at wake-up, breakfast, immediately after school, before dinner, during dinner, and at bedtime. When the dry brushing? When the detox supplements, which must be separated from everything else?

You may be thinking, hey, why not drop a few activities? I would love to. Here are examples of my excuses and counter-proposals:

  • The most cumbersome activity is taekwondo, which Martin does five times per week. He would attend seven times per week if the lessons were available. Most kids attend two or maybe three times per week. We indulge Martin’s habit because (1) taekwondo is one of the few activities that excite him, and (2) even coming twice as much as other kids, he still has trouble keeping up with them, and every time classmates have the opportunity to pass a belt and Martin doesn’t, the experience pains him.
  • His music lesson is a combined once-weekly trombone and drum lesson. He wants to join the school band next year, in fourth grade. He’s been at the trombone lessons for two years, and he isn’t very good. Last fall he asked to change to percussion. We don’t like him hopping around on a whim, so we allowed percussion only if he also stuck with trombone. Then he showed a knack for drums and immediately became a better percussionist than trombonist. If he’s going to succeed in band, drums are probably the key.
  • Chess is a new activity, at my urging. Our community has an active chess program for elementary kids, and I’d like to have Martin involved in at least one quiet, thoughtful activity with peers. The participants, however, have by and large been playing for a while, and Martin needs to catch up, so I have him taking a lesson once a week and practicing the other days. If I can’t have a hockey player, darn it, I will have a chess player.

The truth is, I would rather keep Martin busy. We still don’t have many play dates to speak of, and when he’s not busy, he’s whining for an iPad or for me to entertain him. Of course he needs to develop the skill of entertaining himself, but at least until he can read for pleasure, we probably aren’t there yet.

So there you have it. There are, indeed, parents who do more for their kids than I do for Martin. Far more—even excluding the subset of parents who must do more because their children are extremely high-need. I, too, become overwhelmed at the thought of all I should be doing.

I hope that a parent who reads Finding My Kid and thinks, “No way!” might nonetheless think also, “Okay, part way. I can do some of that.” So that’s the course I took. I analyzed the Regarding Caroline suggestions, took what seems do-able for us, and came up with a Martinized protocol:

  1. We will do a foot bath during iPad time at least four days per week. I prefer Martin to be seated at a table for iPad time in any event, because otherwise he hunches and puts his face too close to the screen.
  1. We will attempt dry brushing Saturday (or Sunday), Wednesday, and Friday. Those are the evenings when we tend to be less rushed.
  1. I will add herx water before breakfast and after school.

That’s it. Those are the suggestions I think I can manage.

And, mind you, the list is aspirational.

Awareness

A few months ago, Martin stuck part of a toy—the pink hand of a rubber action figure, perhaps; we reached no conclusive determination—in his left ear, which his MAPS(-ish) physician (“Dr. E”) discovered during a routine check-up. The next day we trooped over to an ENT specialist for removal. That doctor proposed placing a hollow cone with lighted tip into Martin’s ear, then reaching through the tip with a long tweezer sort of device to grab the “pink thing” (as Dr. E had dubbed the object). The procedure, if Martin held still, would be painless and last only a second or two.

Martin let the doctor peer into his ear but drew the line at the tweezer thingy plunging in there. Each time the doctor got close, Martin yelled, cried, struggled, and protested, hands clenched over his ear. The doctor was all patience, leaving the room while I calmed Martin and returning to try again, and again, for almost an hour. Finally the doctor suggested that we restrain Martin, and I agreed. I took Martin on my lap, crossed my legs over his, and held his wrists straightjacket-style. The nurse used her palms as a vice to steady Martin’s head. Martin screamed “NOOOOOO!” The doctor put the hollow cone in place and deftly, immediately, extracted the pink thing. He hadn’t lied: Once we had Martin still, the procedure took less than three seconds.

Martin stopped screaming immediately. His body relaxed. He studied the pink thing now in the doctor’s hand. Then he said, “That didn’t hurt at all. I guess it was just my anxiety making me scared for no reason.”

What kid is this? I asked myself. Admitting he’d been wrong? Musing on the role his anxiety played? Holy self-awareness.

That was in September. Since then:

>He asked me if I could send something to school for him to chew on instead of his pencil eraser, because he feels like he needs to chew but doesn’t want to keep ruining pencils. (I rummaged through a kitchen junk-drawer and found a silicon pencil-topper.)

>When I asked him why he was jumping in the living room one afternoon—jumping and hand-flapping are rare behaviors nowadays—he replied, “I have some extra energy that I want to get out so I can stand still when I go to taekwondo.”

>While he still won’t admit to being tired, ever, he will make comments like, “I really don’t think I should be up this late,” or, “Maybe I don’t need to read before bed tonight.”

He even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

In the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

So we’re getting a lot more self-awareness. With self-awareness, on the other hand, comes awareness of the challenges that still distinguish Martin from his peers. He asked to reduce his services at school (physical, occupational, and speech therapy, plus resource room) because he dislikes being pulled so often from the classroom. Then he acknowledged, “I guess I have to keep going to OT because my handwriting still isn’t as good as the other kids’.” He wants to join the school band next year, playing either trombone or percussion. He asked, “Mommy, what if next year the band teacher kicks me out because I can’t concentrate?”

I’m very thankful that Martin is suffering less anxiety these days and has better emotional control. The Friday before Christmas was belt testing at taekwondo. Most of Martin’s friends (as always, I use “friends” loosely) from his green-belt class—the kids with whom he achieved green belt together in September—were awarded blue belts. Although he has attended more practices than any of those friends, Martin was not eligible to test for blue belt, because he’s had trouble mastering the new forms and doesn’t have the third stripe on his green belt yet. Adrian took Martin to taekwondo the next afternoon, and I warned him that Martin might become upset or even have a meltdown when he saw his friends with their new blue belts. (The Saturday class is combined orange, green, and blue belts.) But he didn’t. According to Adrian, Martin became upset when he realized I’d forgotten to pack his green belt (way to go, me!), calmed down as soon as the dojang lent him a belt for the day, and never said a word about missing the blue-belt test.

It was September when Dr. E spotted the pink thing in Martin’s ear and sent us to the ENT specialist. In November we had another appointment with Dr. E. That morning, Martin said, “Dr. E won’t find any pink thing in my ear today!” When Dr. E went to look in his ear, Martin said, “Dr. E, you won’t find any pink thing in my ear today!” So I couldn’t believe my ears when Dr. E said he saw a pink object in Martin’s ear. Plainly, Martin thought he was being funny and had shoved something in his ear for Dr. E to find. Back to the ENT specialist we went. This time the object proved more difficult to dislodge, and Martin had to hold himself still while the doctor threaded a noisy vacuum tube into the ear canal. Martin did beautifully. Not a peep during the 20-to-30 seconds the doctor needed to extract what appeared to be a chunk of pencil eraser.

Martin gave me various stories about how the eraser entered his ear, ranging from “no idea” to “I had my head resting sideways on my desk while other students were throwing erasers around.”

Increased self-awareness—yes. Increased maturity—not so much.

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.

I Didn’t Wait for a Prescription When I Was a Teenager, So What Makes Me Concerned Now?

Happy Fourth of July! I’m going to spare you another painful post about school and bullying, at least for today.

You’re welcome.

Instead, let’s talk about cannabis. Medical marijuana.

According to governing.com, “[t]wenty-six states and the District of Columbia currently have laws broadly legalizing marijuana in some form,” and once the measures that recently passed in Arkansas, Florida, and North Dakota take effect, the total will be 29 states. “Some medical marijuana laws are broader than others, with types of medical conditions that allow for treatment varying from state to state.” Additional states (Alabama and Mississippi, for example) have passed laws allowing for marijuana possession in the narrow circumstance of an enumerated rare illness.

Recreational marijuana is legal in eight states. That’s not the topic of this post.

Medical marijuana is approved to treat “autism”—or at least some symptoms thereof, in a physician’s discretion—in only five states and the District of Columbia.

I’ll jump in here to say that medical marijuana should be approved in every state to treat (at least) profound autism, as at least one high-profile case in Texas demonstrates. On a personal note, make sure to tune to this blog tomorrow, for my friend Victoria’s testimony before the Minnesota legislature on what medical cannabis has done for her son, Julian.

In my State, New York, eligibility for medical marijuana rests upon diagnosis with “one or more of the following severe debilitating or life[-]threatening conditions: cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, multiple sclerosis, spinal cord injury with spasticity, epilepsy, inflammatory bowel disease, neuropathy, Huntington’s disease[,] or chronic pain (as defined by 10 NYCRR § 1004.2(a)(8)(xi)). The severe debilitating or life[-]threatening condition must also be accompanied by one or more of the following associated or complicating conditions: cachexia or wasting syndrome, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.”

I love the drafting! “[C]hronic pain . . . must also be accompanied by . . . severe or chronic pain,” and “spinal cord injury with spasticity . . . must also be accompanied by . . . severe or persistent muscle spasms.”

For almost a year, I’ve been carrying (but not using) a prescription for medical marijuana for Martin. The prescription was written by Martin’s New York autism physician, not by his California doctor. (And don’t confuse the New York autism physician with Martin’s regular pediatrician. We have a whole medical team.) The prescription is based upon Martin’s irritable bowel disease, which is a qualifying condition, along with the complicating condition of chronic pain. So Martin qualifies for medical marijuana in New York, no doubt. At the time the doctor wrote that prescription, he suggested that medical marijuana could also help Martin with sleeping, attention, and anxiety. Martin was having trouble sleeping again during that particular stretch, an issue that resolved on its own during the intervening months. His attention also has improved this year. His anxiety—well, keep reading.

When, several months ago, I mentioned the prescription to Martin’s California doctor, whom I consider his “primary” doctor for autism recovery, she balked, albeit gently. Martin neither suffers from seizures nor engages in self-injurious behavior, the two autism-related symptoms medical marijuana may help most. Without a clear-cut need, why not err on the side of safety, given the dearth of research available on how cannabis affects the developing brain? I investigated and found that she was correct about the lack of applicable studies. Most research about brain development focuses on recreational marijuana use (of high-THC product) by teenagers; my own search yielded almost nothing about the downsides of medical marijuana in childhood (and I know there must be downsides, regardless of dispute from advocates). With inadequate reassurances, and given that Martin’s sleep and attention are pretty strong these days, I tuck the prescription away again.

But lo! The anxiety. Martin’s anxiety level is so high. (Bad pun for a pot post? Let’s call his anxiety level “Everest-like” instead.) Martin seems to walk the Earth searching for reasons to lose his cool. Two weeks ago, we were Upstate, whence I hail, and Martin had the opportunity to play with same-age cousins he rarely sees. Martin was having a decent morning, acting sociable, until the moment his cousins arrived, whereupon he left reality and switched to talking nonsense (“There are vampires in New York! They are moving to the capital building, to live in the rotunda!”)—eliminating any hope for productive interaction with the cousins. It was plainly his anxiety, up to no good.

And the meltdowns. 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.

Too late. Martin had slid into his perseverative place, impenetrable by reason or consolation. Awash in tears, he struggled to speak. What brought him there was not, as you might expect, the allergy (terrifying as it had been for me). Instead, Martin had connected the rash with the burger bun and guessed that he would never again receive such a bun. 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. Martin, however, was not to be dissuaded: The bun was at fault, and now he was never going to get a bun again, never, ever, and Mommy? Can I have another bun? Can you go to the store right now? But never, ever, never again. I hustled the nonsense and tears and screaming into our kitchen, away from the gawking of Martin’s guests.

This is the kind of rigidity that Martin’s anxiety imposes: If I have not foreseen every contingency, including the possibility that he might demand a burger bun for the first time, we risk a setback. If Martin faces any new situation, like meeting cousins, anxiety consumes every social skill he’s developed.

It’s come to the point where I see anxiety hampering Martin’s recovery. His anxiety wrecks havoc with his peers, who respond by alienating him, which further exacerbates the anxiety. The same spiral happens at home. I’m constantly on edge, for fear of provoking a meltdown, and I’m certain Martin perceives that tension, which then prevents him from relaxing. Who could regain health under such circumstances?

You might say I’m approaching desperation. I know that the long-term solution to anxiety is to alleviate its underlying cause, whatever that may be. (I suspect, with little basis other than mommy intuition, that it’s related to the heavy-metal burden we continue treating. Heavy metals can lead to brain inflammation. Cannabis can reduce brain inflammation. Martin’s California doctor thinks the cause is more likely babesia.) But I’m having trouble looking long-term. Martin needs help now.

I’ve been researching. (Remember, I don’t science well.) I’ve learned that the human body produces endocannabinoids, which act as neuromodulators for various cognitive and physical processes, including the regulation of anxiety-dependent behavior.

The cannabis flower secretes compounds known as cannabinoids. Examples include THC (tetrahydracannibinol), which is mostly responsible for marijuana’s psychoactive effects; CBN (cannabinol); CBG (cannabigerol); and CBD (cannabidiol). (Cannabis secretes dozens and dozens of distinct cannabinoids.) Cannabinoids mimic the effect of natural endocannabinoids in our system; they bind to receptor sites usually available to endocannabinoids. THC generally binds to receptors in the brain called CB-1 receptors, while other cannabinoids generally bind to receptors in cells of the immune system called CB-2 receptors. CB-1 receptors affect anxiety and arousal during novel situations. CB-2 receptors affect inflammatory response. Cannabis products can be manipulated to adjust the content of the cannabinoids to address specific concerns.

The endocannabinoid system has been implicated in behaviors associated with autism, such as emotional response, behavioral reactivity to context, and deficits in social interaction; “it can be hypothesized that alterations in this endogenous circuitry [of the endocannabinoid system] may contribute to the autistic phenotype.”

My research also piqued my interest in low-dose nicotine theory, which has shown some success in treating ADHD. That investigation is ongoing.

I’ve been making inquiries with trusted friends in the autism-recovery community. My friend N— noted that she has been administering CBD to her son to help with communication and rigidity, but to little or no effect. I have also given CBD oil to Martin, both the HempMeds® brand and the Plus CBD Oil™ brand (because no THC is present, CBD oil does not usually require a prescription), and have seen nothing from the CBD alone. N— noted that according to the latest research she’s seen, alleviating most autism symptoms requires at least some THC to be present. I think that is correct, and the alternative we are considering currently is using a prescription that would contain some amount of THC: low THC and high CBD.

My friend D—, whose son suffers from both autism and epilepsy along with other medical complications, stressed the importance of careful observation and moving quickly to adjust the cannabinoid ratio (e.g., THC:CBD:CNG) in the hemp product when necessary. D— raved about the difference medical marijuana has made for her son, who has progressed from as many as a dozen major seizures per day to only a few seizures per week. On the other hand, D— was distressed when the THC ratio in her son’s product was increased too much and the nine-year-old seemed “high” before developing a case of the munchies. They quickly reverted to a prior formula.

With my friend R—, I had a lengthy pros-and-cons conversation by text message. For me, the highlight was realizing this, late in the days-long exchange:

My text: “Talked with N—, talked a LOT with Adrian. I think we are going to give mm a shot. I really feel like the anxiety us starting to impede Martin’s recovery. But I’m agonizing over this one. So scared of the effects on cognitive development.”

R—’s text: “I think if you give it a shot for a trial, maybe couple weeks, you aren’t going to do much if any damage.”

My text: “My real worry is that it will work, and we’ll go long-term.”

See how that works? I mean that medical marijuana is intended to be a bridge measure, to alleviate Martin’s anxiety while we work on eliminating the causes of that anxiety. I’m worried that if the bridge measure is successful, we might make it a very long bridge indeed, the attendant consequences be damned.

Last week Martin and I visited his California doctor, and I raised the topic of medical marijuana again, this time more intensely, given Martin’s continuing trouble with anxiety and my own increased facility with the topic.

“You’re looking for my blessing?” Dr. C— asked.

“Not your blessing,” I responded. “This decision I actually think Adrian and I have to make, as parents. But I’d like confirmation that bridging with medical cannabis won’t interfere with any of your protocol for Martin.”

“It won’t.”

With that, the balance tipped. In September, as Martin enters third grade, if nothing has changed with his anxiety, we will likely test low-THC medical-grade cannabis, at least short-term. Having put so much time into research and finally reached a decision, I’d like to get started immediately. But I’m drafting this post from a plane to Nicaragua—I keep thinking I need to tell you about that!—and won’t return home until September. However the laws are evolving in the States, I’m not foolhardy enough to carry marijuana abroad, not in any form.

Ultimately, I know that medical marijuana will not heal Martin. My interest in its use is solely as a bridge measure, to boost the real recovery process.

Have I mentioned that Martin is currently obsessed with bridges?

Opposite Direction

We had that one golden week, immediately after I switched Martin to low-salicylate diet.

The next week wasn’t so good.

This week isn’t so good.

You know what I mean by “not so good”: lots of silliness, little concentration, some meltdowns.

We are still doing low-sal.

I can’t identify any environmental changes since golden week.

What is different is that we are, again, increasing the anti-microbials in Martin’s protocol, trying to reach what his doctor considers full dose.

Martin’s system is sensitive and reactive. I begin to doubt whether we will ever make it to full dose.

I’m going to try an experiment, this week: I’m going to reference Martin’s protocol sheets (I print them at home and keep them all, of course) from our ski week and from the golden week. Whatever dose of each antimicrobial Martin had those weeks, he shall have this week.

I’m writing this at Martin’s taekwondo class. I’m watching him focus on nothing. I’m looking at a kid with half the attention span he had two weeks ago.

And so for a little while, I don’t care whether we are working to reach full dose of antimicrobials.

I just want another golden week.