Actualización II de Nicaragua: NicarComidaYAgua

Feeding Martin in Nicaragua is both more and less challenging than in the States.

To be sure, Nicaraguans love their packaged foods. Chips, crackers, cereals. Breads. Whatever forms of snacks.

They also love their fresh food. Fruits, vegetables. Fish and shrimp and octopi pulled from the ocean and eaten the same day. (I hate that Martin eats octopi.) By now we’ve been able to locate the stands and trucks with the produce we want. Samara has a favorite fish monger and a carnecería for occasional chicken. Virtually nothing is organic, except some newfangled greens and the occasional imported quinoa. I am comforted by the fact that the food is grown locally, where Nicaragua’s stricter stance (than the U.S.) on genetically modified crops also reduces the presence of especially worrisome contaminants like glyphosate.

Martin’s breakfast is usually grain-free pancakes (say, plantains and peanut butter), or fritters, or eggs with vegetables, plus fruit. Dinner is rice and beans, or coconut-crusted chicken nuggets with vegetables, or quinoa pilaf, or peanut-butter stir-fry, or maybe ceviche. (Samara’s ceviche skills are said to be outstanding.)

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A Nicaraguan breakfast of plantain-and-peanut-butter fritters plus apple. Did you know apples can be grown in Central America? Neither did I.

Weekdays, Martin eats lunch at his camp. That development—eating with the other kids, and mostly what they eat—has been huge for Martin, who’s wanted all year to buy lunch at his school back home, which, of course, would be inconceivable: Have you seen U.S. school lunches? Here, at the camp, lunches are prepared fresh from organic ingredients, many grown on site, with focus on health. I met in advance with one of the camp directors and asked that they respect Martin’s dairy and beef allergies, and that he not be permitted to eat any gluten. No problem, they said. The directors reported that, for the first week, Martin had “lunch worries” and needed to be persuaded each day, anew, that in fact he would be fed. At first, he ate tentatively, mostly Nicaragua’s famous rice-and-beans dish, gallo pinto, or even arroz unadorned.

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The aftermath of Martin’s octopus, rice, and vegetables on the beach.

After the tentative first steps, Martin started taking advantage of everything offered. I mean, everything!, and that’s brought some slip-ups. Even though I pack healthy snacks, he wants the snacks the camp keeps on hand for all kids, which include popcorn, commercial yucca and plantain chips (fried in who knows what sort of refined vegetable oil), French fries, popsicles with food colorings and refined sugar. I don’t like the snacks aspect but am resisting the urge to make the camp pull back; eating at camp, plus the wide availability of fresh seafood and vegetables in Nicaraguan restaurants (not much pizza or pasta getting in the way), seems to be helping to reduce Martin’s food-related anxiety. I hear less, “Can I eat this? Can I eat that?” and more, “Hey, do they have octopus? How about rice?”

We are, however, in something of a popsicle crisis. Now that Martin has tasty a frozen refined-sugar stick, my homemade frozen-fruit popsicles just aren’t cutting it anymore.

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This is a “fancy” breakfast, like we have when guests are eating with us: pancakes and potatoes cooked with shredded vegetables.

The overall picture is that Martin has been eating 93.6% well, and 6.4% sugar and junk food. When I say sugar, I mean those aforementioned popsicles but also potatoes, rice (which also brings arsenic), and fruit. The fruit includes a daily smoothie from our favorite smoothie stand. Martin selects the three fruits he wants (usually pineapple, mango, and lemon), while from behind him I mouth “¡y aguacate!” to the smoothie-maker so that he’ll throw in some avocado, too. Martin professes not to like avocado, so I have to get creative, like sneaking it into a smoothie.

A few weeks ago, I discussed the situation with Martin’s doctor back home. Too much sugar, I confessed. A whole lot of fruit. Smoothies every day.

“You mean fresh, mineral-rich local fruit?” she asked.

“Some of it directly from the fields,” I replied.

“I think he’ll survive.”

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Another breakfast, this time plantain-and-egg pancakes with pineapple and raw energy bars that I made from almonds, dates, limes, and shredded coconut.

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.

Exercise

Allow me to reminisce on my 1970s childhood. For sure, I watched television, probably too much. But I also remember exercising, a lot. We played kickball in the street, tag, hide-and-seek, capture the flag, pig. We explored woods and hunted crayfish under rocks in the creek. We chased each other in the cornfield. No dinner to steal, only cow corn for the dairy down the hill. We tried to play tennis, with wooden rackets and balls that barely bounced. In one claustrophobia-inducing memory, three friends and I crawled hundreds of yards through a pitch-black 24-inch drainage pipe to investigate the inside of a street sewer. In the winter we built snow forts or went sledding, climbing back up the hill hour after hour. All of this play happened in addition to nightly swim practice, plus soccer in the fall, softball in the spring.

Months ago I took Martin to a play date at his friend Jonathan’s house. Jonathan, who has special needs, is the oldest of four rambunctious brothers. On the day I brought Martin to play with Jonathan, his brothers Brian and Michael each had a friend over, too. (The youngest brother, a toddler, made adorable trouble getting in everyone’s way.) Brian and his buddy grabbed a soccer ball and dribbled around the yard, sometimes passing to each other and sometimes stealing from each other. Michael and his buddy found various wheeled toys (skateboards, toddler buggies) and raced along the driveway, then joined the soccer. Meanwhile, Martin showed little interest in the games that Jonathan (scaffolded by his mom) proposed, like a modified ring-toss set. He and Jonathan ended up wandering from activity to activity, usually alone. Martin also whined.

After an hour, Brian and Michael and their respective friends, sweaty, went rooting around the kitchen for snacks and drinks.

I want that for Martin, I thought. I want to see him flushed and thirsty and happy. I want to see a kid who’s played himself to exhaustion.

I rarely get to see Martin that way. Exceptions are when he spends time in the ocean, or when we’re skiing and he comes off the slopes red-faced and tired. Those aren’t team or cooperative activities, though. His beloved taekwondo, which involves other kids and benefits him in terms of attention, isn’t really physically vigorous enough to exhaust him. And as to the kind of unsupervised exercise-play I enjoyed as a kid:

  1. Times have changed. We live (mostly) in a New York City suburb. Letting my nine-year-old hang out in the street for kickball or spend his afternoons unsupervised in a creek bed would be good ways to get to know my local Office of Child and Family Services better.
  1. Martin’s ability to engage remains limited. The stuff I used to do—not all of it, as I could also be a loner—required participation: knowing the rules of a game and wanting to affiliate. Martin wavers between trying to play with others (and getting upset if he can’t) and prefering to be alone. Alone with an iPad. Alone with pens and paper. Alone. Even when a game is happening, he may not join, and he will never suggest or organize.
  1. We still have these damn problems with mitochondrial processing. We’ve come a million miles from the earliest days, when Martin’s three awake states were running, lethargy, and disconnected drifting. Imagine a toddler with no energy to pick himself up from the floor. But Martin still tires more easily than other kids, and lacks coordination. Physical activity may never be his thing. (Paradoxically, one of the best treatments for mito dysfunction, I believe, exercise.)

My eyes are always open for new forms of exercise Martin will actually do, and team or cooperative activity is bonus. I have a new idea, which I hope to put into play when we return to the States this fall: crew. I think rowing would be a good fit for Martin. Rhythm, team participation, and no complicated routines or strategies to master. I mentioned the idea to Jonathan’s mother, and asked whether she thought Jonathan might like to try rowing along with Martin. She responded with an enthusiastic yes. I am now searching for a rowing program or coach who will work with nine-year-old boys. (This is turning out to be not so easy.)

Meanwhile, I’m talking with Martin about the sport and showing him videos of the Montclair High School boys’ crew team. In a coincidence, Montclair’s undefeated Varsity 8, the current national champions, include the son of my oldest brother’s college roommate, and also the son of a congregant from my former parish in Manhattan. I’m wrangling these connections to bolster Martin’s interest. I think it may be working: Martin has just announced that he intends to become a national champion rower one day.

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Exercise in Nicaragua! This is Martin getting ready to zip-line through the jungle. He would zip-line every day if I would let him.

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.

Legislative Commentary. Sorry, Not My Usual Thing, But This Deserves an Exception

As promised in yesterday’s post about medical marijuana, and with permission, I’m posting the testimony of my friend Victoria Grancarich. This testimoney will be given before Minnesota lawmakers this September. Victoria’s circumstances are very different from mine, as her son’s place on the spectrum is far from Martin’s. But this epidemic is all one spectrum. We stand in solidarity with each other, and root for what helps any child.

Victoria’s 14-year-old so, Julian, is profoundly affected by autism. Victoria and her husband, John, have truly scoured the ends of the Earth to help Julian and have made progress healing his mind and body. Nevertheless, several years Julian threw himself from a balcony, breaking his back and both his legs. With the onset of puberty, Julian’s self-injurious behavior escalated to the point that he needed constant restraints and protective gear to avoid beating himself into concussions. Victoria and John believe medical cannabis saved their son’s life. As a friend and observer, I agree. In my opinion, to deny marijuana to Julian would be abuse. Yet, this medication was available under Minnesota law only because Julian also suffers from seizures; if he suffered from self-injurious autism but not seizures, the marijuana option would be unavailable. Victoria offers her testimony in an effort to have the law changed and make medical cannabis available to all Minnesotans in need.

My name is Victoria Grancarich. I’m the mother of a 14-year-old boy named Julian. Julian has severe Autism and a seizure disorder. Julian began having seizures in June of 2011. We have tried many medications over the last six years; however, seizures and motor tics continued to be an issue.

Julian had always been a kind and affectionate boy in his younger years. When Julian turned 13, the onset of puberty brought new challenges. In February of 2016 Julian became extremely violent toward both family and school staff. He began raging daily and would physically attack us. It got to the point where we as his family needed to wear protective clothing to avoid being bitten, having our hair pulled, and being kicked and punched. His younger sister could not be in the same room, and she had to spend all of her time at home locked in her room for her own protection.

In August 2016, Julian began to turn the violence on to himself. He began punching himself in the head full force thousands of times per day. He would use his knee to injure his teeth. He would bang his head into walls. We were powerless to stop him. We were trying to protect him using helmets and arm immobilizers, and at times we had to physically restrain him for hours at a time to keep him from harming himself. We believed our son was in terrible pain and was suffering from debilitating headaches. We saw this once vibrant boy lose his will to live. He seemed determined to end his life and came close several times. Between October 2016 and January 2017, Julian was hospitalized three times. He suffered self-inflicted skull fractures and massive tissue damage. He had black eyes and giant hematomas on his skull regularly. The hospital staff offered psychiatric medications as well as gabapentin but nothing could stop the daily rages that lasted every moment that he was awake. I felt certain that if we could not get Julian cannabis that he would find a way to end his life.

Julian qualified for cannabis through the state program because of his seizure disorder. After being sent home from Children’s Hospital in Minneapolis after another life threatening episode of self-injury with no plan in place to heal our son, we felt cannabis was our only hope. The excruciating pain our son was in was getting worse and we knew no pharmaceutical medication could help him. We had tried everything the doctors offered and had absolutely no success.

We enrolled him in the Minnesota Cannabis program in January 2017. Within a week of beginning cannabis therapy Julian was able to go about an hour without harming himself. As the weeks went on and we reached a therapeutic dose Julian’s behaviors began to slowly melt away. By early March he was smiling again. Within six weeks of beginning cannabis Julian was no longer injuring himself or others. He began to take an interest in his life again. He returned to school full time. We were able to remove his helmets and protective gear. By mid-March we were getting smiles and hugs. Julian began to go outdoors again by mid-April. By May Julian began to show interest in using augmentative communication for the first time in his life.

It is now late June. We have not seen one episode of self-injury since early March. Julian has not struck me since February. Julian is enrolled in a day camp for children with special needs where he spends eight hours a day. He is exploring outside and making friends. He is happy and smiling. Julian and his sister have a relationship once again. Julian spends hours in our back yard enjoying bouncing on his trampoline, moving his body and taking in fresh air. He lives safely and happily in our home. He is free from pain. His seizures and motor tics are well managed to the point they are not interfering in his daily life.

Cannabis gave us our beautiful son back. Julian Grancarich is alive and well today because of this miracle medication.

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?