Yeast Defeated (?), Another Beast Rises (?)

On the offhand chance you haven’t been tracking this yourself, I can tell you that these are the most recent mentions, on this blog, of yeast:

  • the 20 April 2018 post on detoxing, when I wrote that yeast was not causing Martin’s silliness;
  • the 22 February 2018 post on current issues, when I asked whether yeast might be implicated in skin rashes (apparently, it wasn’t); and
  • the 25 October 2017 post on meal preparations, when I noted that fruit no longer seems to cause yeast issues for Martin.

Years ago, I wrote about yeast constantly. I called it the “yeast beast” and lamented its repeated torment of Martin. Every time I thought we had yeast under control, I’d see a “fluffy” bowel movement, or the characteristic rash would emerge again.

Martin still takes Candex, which was the product that (I think) finally subdued his candida. I’m not ready to add yeast to the So Far Gone list, but for now, it’s gone enough.

Parasites think the disappearance of candida has given them an opening to fill.

Martin passes a lot through his skin. As of late, a lot of what passes through Martin’s skin looks like parasite activity is involved.

On the morning of June 10, just after we returned from a few days in California, Martin woke with a collection of strange bumps on his left forearm, many of which he’d already scratched raw. They looked like tiny insect bites, as if a single bug had crawled onto Martin, wandered about a small area eating its fill of flesh, and disappeared, or as if a bunch of bugs had assembled, used the arm as a buffet, then dispersed and gone home.

Martin’s arm hadn’t shown any evidence of this the night before. I tore apart his bed, searching for a spider nest or other den of revulsion. I found nothing.

By breakfast, when the fresh scratches had faded, the bumps started to look like a rash.

Martin said the bumps didn’t hurt, and didn’t itch (anymore?), but he wouldn’t let me touch them or examine them too closely. “It’s fine. I’m fine,” he said, tugging his arm away.

What the heck? Martin wakes with an odd collection of angry bumps, within a few square inches of skin, with no evident cause, which he then claims are not bothering him? In usual circumstances, I would attribute this to a mystery insect and move on. This year hasn’t been usual circumstances, though. At least not when it comes to parasite activity.

A week before the mystery bumps, I had posted about the condition of Martin’s arms and legs. With his skin such a mess, I was forced to consider whether parasites could be at work—again—already—just a few months after the anti-parasitical drug Alinia had reduced Martin’s itching and his inappropriate comments. I took Martin back to his New York biomed doctor, who agreed with my assessment. Parasites. Dad-blasted parasites. The doctor prescribed another round of Alinia. I avoid using any pharmaceuticals with Martin—we used nystatin once, for yeast, and it made Martin’s behavior bonkers—but the Alinia had worked so immediately, earlier this year, that I agreed to try the drug again. We did a first round while still in the States, and the second round here in Costa Rica.

If anything, Martin’s limbs are looking worse than in June. These are current photos of his legs:

  

Martin is picking at his skin compulsively. He’s also putting his fingers into his nose and mouth. Not picking his nose, thank goodness. More like rubbing and poking, as if his nose and mouth are irritated.

Do these symptoms mean Alinia isn’t doing the trick, this time? That whatever parasites are plaguing Martin are unaffected by Alinia? Or that parasites aren’t the problem? Or that parasites are the problem, and they’re trying to escape through Martin’s legs?

We spent years getting candida under control. I’m hoping parasites don’t mount that kind of protracted offensive. So many factors are at play. The New York doctor contends that we need stronger chelators, that parasites cannot be finished off while the body carries too great a heavy-metal load. (We know, based on hair analysis and other testing, that Martin has trouble excreting heavy metals. We use chelators including prescription DMSA, oral Liposomal EDTA, algas, and Bioray NDF Plus. I’ve never agreed to IV chelation because I consider it too harsh.) Heavy metals may be playing a role, but I also need to look at the ways I enable parasites to infiltrate Martin’s defenses. I try to be careful about what products we use for cleaning, and certainly Martin doesn’t have amalgam fillings, as I once did (and probably passed a significant portion of my toxicity to poor Martin). But Martin still eats fish, lots of fish (even if I am continually trying to keep him off raw fish). My friend Stacey re-washes vegetables labeled “triple-washed.” I don’t do that. I let Martin play in tide pools and swim just about anywhere, like at the river mouth with his day camp. And no amount of modeling, instructing, helping, begging, or pleading has yet got Martin to wash his hands properly. He prefers to make an impatient mess by rinsing his hands and shaking the water off.

In short, there are ways I can step up my parasite-prevention game, even as I keep on my parasite-elimination game through, for example, regular use of diatomaceous earth.

Two months later, Martin’s forearm still shows the remnants of the many bumps. Metaphorically, that means I’ve got to roll up my sleeves and get to work.

How It Lingers

My sister is visiting us, here in Costa Rica, with her two daughters:  Mandy, who is Martin’s age, and Julie, who is about to turn two years old.

Sunday we took a day trip to a nearby beach town. When we arrived, the kids got fruit smoothies. Then we hit the beach. The waves were pretty strong. We adults (my sister, my brother Eddie, and I) took turns going into the surf with the kids. I try to get Martin as much salt-water time as possible. I consider the ocean a health spa.

Martin had already had several solid days with Mandy. She attended camp with him. The two of them fussed and played for hours each afternoon. They put together evening concerts: Mandy wrote an emcee script for Martin to perform, and then, using five-pound dumbbells for microphones, the two sang Uptown Funk!, A Million Dreams, even a jazzy version of Happy Birthday to send to Adrian, who’s in New York. The songs were accompanied by the kids’ original choreography, which resembled running crisscross while high-fiving each other at each pass.

And now, Sunday, everyone was having a great time, as far as I could tell, even if Martin did start to get anxious as lunchtime neared.

We left the beach to walk to an outdoor fresh-preparation food stand (everything gluten- and dairy-free! pura vida!). Along the way we stopped at a souvenir shop, where Martin selected an inexpensive carved frog. I spoke to the proprietor in Spanish. Martin refused to look at the man. Instead he put his face near mine and whispered, “Mommy, pretend you don’t know a word of English!” Martin’s picked up an odd obsession lately: He tries to dictate who can speak which languages, and when. He even manages to impart his angst into the topic. If he finds out we are going out to dinner, he demands to know in advance whether I plan to speak Spanish or English to the waiter and tells me to guess whether he plans to do the same. In the souvenir shop, I said, “Martin, that’s silly. He can tell I have a North American accent. Why don’t you say hi?” The proprietor then greeted Martin, in Spanish, and asked how he was doing. Martin turned away as if he hadn’t heard. Covering, I apologized and said that my son does speak Spanish but is shy about doing so.

As soon as Martin and I were back on the sidewalk—Mandy and the others had wandered to another shop—Martin started to meltdown. His meltdowns are so infrequent these days that I don’t anticipate them like I used to, and this one caught me of guard. Martin asked, “Why did you do that? Why did you tell him I speak Spanish?” His words quickened as he said, “Why did you try to make me say hi? I didn’t want to do that. Why are you so mean? You’re the meanest mom in the whole world.” He was crying as he descended into nonsensical opposite-talk: “I hate you. I don’t love you. I wish you weren’t my mom. I don’t speak English anymore. I’m never speaking English again. New rule: I have to talk to everyone we meet!” He thrust his jaw forward (that old trick again!), clenched his fists, and motioned as if to punch me, though he did not make contact. (He never does, thank heavens.)

I stood by him and let the meltdown run its course. When the opposite-talk subsided, I tested the waters. “Martin, were those the things you really wanted to say?”

Still not in control, he answered, “Sorry, Mommy. I didn’t mean it. I did mean it! I hate you!” He air-punched again, then hugged me, sobbing.

Mandy approached, accompanied by my sister and Julie. Mandy asked, “Why is Martin crying?” Her question pained me, for two reasons. First, the obvious reason: Especially in the moment, I have no effective means to convey to a nine-year-old that her cousin is crying because anxiety has been collecting inside him until a random, almost undetectable social pressure knocked him into a netherworld of confusion. Second, the less obvious, more painful reason: In visits past, Mandy tended to ask mequestions about Martin. “Does Martin like watermelon?” “What time does Martin get up?” I would have to remind her that she could ask Martin, even if he didn’t always answer immediately. This visit, until the meltdown, had been different. Mandy had been asking all her Martin questions—even questions about food allergies and what he can eat—to Martin, and he’d been answering. As he returned to meltdown mode, however, she stopped relying on his ability to speak for himself.

I said, “He’s having a tough time right now. Why don’t we walk to lunch?”

Cheerfully, my sister said, “Great idea! Let’s walk.”

We continued to the lunch joint, Mandy casting suspicious glances at Martin as he tried to get himself under control. By the time we sat at a picnic table, Martin had stopped crying enough to manipulate me. He said, “I think what would help me calm down is your iPhone.”

Adrian and I don’t usually allow screen-time at meals. Nevertheless, I gave in. I wanted to distract Martin from whatever was bothering him before Mandy witnessed any additional meltdown.

A day trip with his favorite cousin, to a beach he knows and enjoys, with the promise of lunch at a food stand he likes, and then, pow!, a meltdown. The frustration! Sometimes it feels like no much Martin’s health and behavior improve, the remnants of autism hide inside him, ready to interrupt paradise with their ugly ways.

My survival tactic is to remember to look for the silver lining. Sunday, allowing Martin to play with the iPhone did the trick. By the time our food arrived (25 long minutes later, pura vida), Martin was ready for limited participation in lunchtime discussion about the waves and fun we’d had in the ocean. On the drive home, strapped into the third row of our SUV, he beatboxed with Mandy. Almost as soon as we arrived back at our rental house, a brother and sister showed up for a play date (these arrangements were Mandy’s doing), and Martin participated decently. Mostly he followed the brother around spouting Minecraft strategies—but hey, that’s a form of socializing.

Martin melted down.

He bounced back.

I take what I can get.

Martin and Mandy, in the waves.

Now He’s Wondering

Six months ago, when Adrian and I tried to talk to Martin about his remaining challenges, Martin seemed almost indifferent. If anything, he avoided the topic.

During that conversation, which was designed to highlight Martin’s strengths along with his weaknesses, we discussed what we’re “good at” and “not so good at”—nothing about a diagnosis or giving a name to Martin’s challenges.

Subsequently, in one of our heartfelt bedtime conversations, I decided to offer Martin a more concrete focus. I asked whether he had ever heard of autism. (He thought he had.) Then I said that social situations are difficult because he used to have autism and still is catching up to his peers.

Again I was met by apparent indifference. Martin said, basically, “Oh.” I didn’t push the topic, but since then I’ve used the word “autism” occasionally: We eat a special diet to make sure the autism stays away, we take pills to finish getting rid of the autism, &c.

Martin never followed my lead and talked autism. Until now. Over the past week, Martin seems to have become interested in autism.

He’s asked questions designed to help him understand himself: “Does autism make me interested in adult topics?” Really not sure what he meant by ‘adult topics’! I’m telling myself he meant literature and history . . . . “Does autism make me see things different from other kids?” In these questions, he uses the present tense, as in, how does the fact of autism, regardless of whether it’s the current diagnosis, affect me today?

He’s told me things, for the first time, that confirm suspicions I’ve long held: Even before Martin seemed cognizant of the world around him, he was. We had this conversation:

Martin: “I hate that I’m bad at making friends.”

Me: “I know it’s still hard. Can we think about how it’s getting easier? This school year was so much better than last year. And I bet next year will be even better still. You’ve made progress. When you were little, you wouldn’t even respond to your name.”

Martin: “When I was little, I heard you calling, but I didn’t have the attention to answer.”

I’ve been trying to imagine that anguish. He recognized his name yet had no means to show us.

He’s forced me to impart some elementary biomed theory, as when he asked, “Why was I born with autism?” I responded by attempting to explain that something hurt his wellness system, whether before he was born or after. I referenced his uncles to explain that troubles with wellness systems run in families: Both my older brothers have asthma and environmental allergies, and one also has food allergies and has suffered from chronic bronchitis. These were perhaps the responses that left Martin looking the most quizzical.

Finally, he’s prompted me to reflect on my own feelings. He asked, “Do you think it’s fair that I used to have autism?” I started with honesty: No, I do notthink it’s fair that my son got autism. Then I tried to temper that answer by modeling gratitude. “Can you think of a friend who still has autism?” I wasn’t sure whether he would respond; we’ve never used the word “autism” in reference to any of his friends. But almost immediately, he named a little pal of his who uses “quiet voice,” i.e., whose verbal ability remains limited. I asked whether he thought his friend would like to be able to talk more, like he can now.

Martin said yes, that he thought his friend would like to be able to talk more. I said that I’m thankful for Martin’s hard work and progress.

My boy—whose verbal skills once were limited to echolalia but who, through biomedical intervention, has become able to express himself meaningfully through spoken language—guessed that his friend would also like to acquire spoken language.

For me at least, that answer gives lie to any neurodiversity movement that objects to biomedical interventions aimed at alleviating or eliminating autistic symptoms. In December 2014, I wrote on this blog: “[I]n all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, ‘I wish we hadn’t done this. I prefer being autistic to being neurotypical’.” I wonder if the day is approaching when I can count Martin among those who would never say, “I wish we hadn’t done this.”

IMG_0872

That’s Martin. I promise. It is.

This Didn’t Just Happen

Have you ever seen a sad viral post on social media about a special-needs child who throws a birthday party and no one shows up?

I’m sure you have. I’ve seen several. One post had a photo of a teenager at Chuck E. Cheese, sitting alone at a party table set for a dozen, a whole cake in front of her. Another post came with a happy ending: After a mom posted on-line that her son’s birthday party was happening with no attendees, the local fire department brought their truck right over to make the boy’s day special.

That happy ending notwithstanding, parties without any guests are terrible, both for the child’s self-esteem, and for how they reflect on community values.

What I am about to write is not intended to blame parents or caregivers for birthday-party failures. No parent should have to undertake the measures I am about to describe. These are actions that I choose because (1) Martin is fragile and socially awkward, and (2) many families either don’t understand or don’t care what it means when they RSVP “yes” to a special-needs child’s birthday.

To his ninth-birthday party, last year, Martin invited eight typically developing kids and a dozen with special needs. Of the eight typically developing kids, despite responding yes to the invitation and again to my follow-up email, four did not come. The mother of two of the no-shows said later that the family had “ended up going to visit an aunt and stayed longer than expected,” or some similar excuse. The mother of another, when I asked, texted me vaguely that her son had a stomachache. The parents of the remaining boy never said a word about his absence. Of the four typically developing kids who did attend, three were the children of family friends, and one was a boy who, despite being more or less typical, has some mild cognitive challenges and immaturity.

Of the dozen special-needs kids invited, all came, no follow-up necessary. When you are the parent of a special-needs child, you cherish every invitation, and you know what it means when your child is expecting a friend who fails to arrive.

Before we left the States, this year, we held Martin’s 10th-birthday party at our home. This was the first time the invitees to his party have been majority typically developing instead of majority special needs. In fact, Martin had such a good school year that he wanted to invite every kid in his class, 22 kids plus himself, including a lot of kids whose parents I really don’t know. He also wanted to invite a half dozen typically developing kids from his taekwondo dojang. In addition to that list, he wanted to invite the kids from his social-skills playgroups, and a few from his former school, which was self-contained special education.

I was relentless in seeking RSVP’s. Relentless. I began by sending every family an email to say that their child would be receiving an email by U.S. Post. The invitations were mailed six weeks before the party. After the nominal “RSVP by” date passed—by which time only special-needs parents had responded—I started the follow-up emails. (I remember the mother in one of the social-media posts referenced above saying something like, “No one responded to say they weren’t coming, so I figured they were.” That will not do.) For parents who were unsure, I followed up again. And again. Not in a way that would pressure anyone to attend: it was more like, “Trying to get an accurate count for food,” and that sort of thing. For parents who did not respond or who had no email, I found phone numbers. To contact parents with limited English (our area has a large Spanish-speaking population), I dispatched Adrian. If a child wanted to come but had no ride, we offered to pick him/her up.

By the week before the party, I felt I had a solid count of who would attend, or as solid as possible. Nevertheless, if asked by Martin, I avoided speaking in definite terms. Instead of, “Ben is coming,” I said, “Ben’s parents say they think he will probably be able to come.” I saw no point in building up Martin’s expectations if any chance existed that they would not be fulfilled.

The party was held the last day of school, after the kids’ early dismissal. We ended up with a no-holds-barred, over-the-top, supersized fiesta. There were two professional lifeguards, one stationed at each end of the swimming pool. Four dozen foam water cannons were lying around the pool deck. Our recently acquired 14-foot trampoline was open for business. The local Ralph’s Italian Ices franchise sent a festive umbrella/freezer cart, packed with flavors selected by Martin, and a uniformed employee to scoop unlimited servings. (Martin does not usually get to eat Ralph’s Italian Ices. This was a birthday treat he finagled, as follows: “Mommy, can we have Ralph’s Italian Ices at my birthday party? I already told everyone that we would.”) My brother Eddie manned the grill, flipping hamburgers, turkey burgers, and veggie burgers onto gluten-free buns. I hired teenage assistants, whose job was to run around cleaning up paper plates, serve food, and occupy any party-goers who looked forlorn or left out. The birthday cake was decadent and sprinkle-covered, prepared by a gluten-, nut-, and dairy-free bakery.

And 42 kids attended. Forty-two kids, all friends/classmates of Martin (and some siblings tagging along by permission). Seventeen of Martin’s 22 classmates came. Every kid on my final list actually showed up. Martin was in his glory. I had talked to him beforehand about retreating into the house for a short time if he felt overwhelmed during the party. Unnecessary. He spent the entire three hours outside in the yard, having fun. And then, when the father of two guests failed to pick them up as scheduled, Martin calmly invited them to play Xbox and spent an hour on the sofa.

Bringing the event together took hours upon hours of work, plus more funds than I ever intended to spend on a birthday party. In the end, Adrian and I got exactly the type of day we hoped to give Martin, to crown a school year of remarkable social advancement.

Although Martin’s Friday-afternoon birthday party was likely the highpoint of his weekend, it was not the highpoint of mine. Martin had two other birthday parties to attend that weekend. (Parents whose kids have summer birthdays tend to squeeze the parties into the last couple weeks of school.) Saturday afternoon, Adrian took Martin to a movie-theater party held by a friend from social-skills playgroup. Martin sat next to another boy from the same playgroup and watched Jurrasic World without incident. Sunday morning, I did not want to miss church, and Adrian had left town on a business trip, so Eddie took Martin to the birthday party of a classmate (!) at an indoor sports facility. They arrived 10 minutes late, and the kids were already organized into groups for a game. According to Eddie, as soon as he and Martin entered the facility, a boy yelled, “Hi, Martin!” and another yelled, “Come join our team!”

Hearing that report, dear readers, was the highlight of my weekend.

ASD Recovery Recipe: Anything Taquitos

It’s been a million years since my last recipe post. I vaguely remember that post being titled “Anything Pasta.” Its point was that, pretty much whatever is in my refrigerator, I can make (GFCF, lentil-based) pasta with those ingredients, and Martin eats. (Exception: mushrooms. The kid can sniff out a mushroom like a truffle hog.)

Today I reveal another secret, the taquito miracle. Martin can tolerate almond flour, and he does well with Siete brand almond-flour tortillas. Occasionally I make tacos at home, with spicy beans, tomato-walnut filling, spinach, tomatoes, onions, salsa. For me, I use corn hard shells. Adrian and Martin prefer gluten-free tortillas. One day I took leftover taco beans, added Miyoko’s cashew mozzarella, rolled them tightly into a Siete tortilla, and pan-fried the concoction, which sealed the tortilla shut and also made an externally crunchy finger food.

Martin acted like he’d found paradise. That first time, he ate four taquitos in a row.

I thought, why stop at leftover taco beans?

Since then I’ve realized I can roll a whole variety of ingredients into a taquito and watch Martin enjoy the creation. Last week, I made gallo pinto. Unfortunately, I rushed the job, and the beans didn’t end up as soft as Martin likes them. Although my brother Eddie, who is here with us in Costa Rica, enjoyed the meal, Martin refused to finish his portion.

Fast forward to the next day, lunchtime. I scooped leftover gallo pinto into a Siete tortilla, rolled, fried. Presto! Martin snarfed the first taquito and requested a second, no hint evident of the previous day’s fussiness. Other leftovers I’ve snuck into taquitos include rice pilaf, lentils, mixed vegetables. In a pinch I’ve combined organic pizza sauce and Miyoko’s mozzarella to blend two cuisines into the “pizza-quito,” a Martin favorite.

I also use the tortillas to make “quesadillas,” i.e., two tortillas like sandwich bread around filling, pan-fried into something resembling an edible frisbee. I make varieties of “breakfast quesadilla,” such as peanut butter and coconut, or cashew butter with banana. (Yes, I also make breakfast taquitos.) Martin currently dislikes leafy green vegetables. Usually I hide them in smoothies. One morning I happened upon another minor miracle. I finely chopped fresh spinach, then tucked it with Kite Hill almond cream cheese and Himalayan salt between two tortillas, and fried. If Martin was concerned about the spinach—which, by the way, was not hidden in the final product—he failed to mention the concern when he asked if he could eat the same quesadilla again later.

We’ve been in Costa Rica a couple weeks already, where (despite a remarkable variety of organic and GFCF products, compared to Nicaragua) items like Siete almond-flour tortillas aren’t so easy to find. The first week, Adrian was with us. He stepped onto the porch one afternoon to find Martin munching contentedly on a peanut-butter-and-strawberry taquito.

“Martin!” Adrian teased. “Did your mother travel to Central America with almond-flour tortillas in her luggage just so you can eat taquitos? Are you that spoiled?”

Yes, I did. Because yes, he is.

He Does Not Mean What He Says

In a Facebook discussion group today, an uncomfortable topic arose: when kids on the spectrum become fascinated with and/or talk inappropriately about race.

This happened to Martin. For about six months last year and this, Martin made race-based remarks that he knew were untrue or would displease others. He told me and Adrian that “Hispanic kids aren’t as smart.” (As long-time readers of this blog know, Martin is both Hispanic and Spanish-speaking.) He pointed out to his best school friend, repeatedly, that she was the only black student in their class. In the most disheartening incident, the details of which remain unclear, I think Martin cost me an emerging friendship. I had grown closer to a woman from church, who happens to be black. We were enjoying regular lunch dates and pedicures together, and one of her daughters, a middle-schooler, babysat Martin sometimes. One evening I drove the daughter home after she’d spent a few hours with Martin. She was unusually subdued but mentioned no particular troubles. The next Monday I texted her mom to confirm a lunch date and received a response that she was too busy to meet. I replied “no problem” and suggested moving the lunch to the following Monday. My friend did not respond to that text, nor to the next, nor to a request whether her daughter could watch Martin again, nor to several additional attempts at follow-up. Her family, before these events, had switched congregations to accommodate a work schedule, so I had no chance to see her in church. Several weeks later I was walking in town and saw my friend and her daughters across the busy main drag, heading the opposite direction. I waved. Whether they saw me, I do not know. They kept walking, briskly.

When I realized what was going on and asked Martin whether anything had transpired with the daughter, he said no. Tellingly, though, he also slid into partial shut-down mode—that place where he changes topics, or says, “I don’t want to talk about that,” or just becomes agitated. Once Martin begins to shut down, I rarely get any additional trustworthy information from him. To this day, I do not know what he said or did not say to my friend’s daughter. My suspicion is that he commented inappropriately on race or race-related issues, and that the girl assumed our family holds antiquated, wrongful opinions.

I alluded to this difficult time in a February post titled “Current Issues.” I wrote that Martin had been “impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome” and that:

After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her ‘racist’.” [Nicole is not the best friend mentioned above, and is Hispanic, not black.] . . . He added, ‘Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth’.”

After six months or so, Martin’s inappropriate race-based comments faded. (Thank heavens.) Martin tends to cycle through fascinations: the Beatles, trains, geography, world flags, skin color. His race comments fell within that pattern, and also within a larger habit with which we still struggle, i.e., opposite talking. When Martin becomes nervous or agitated, he blurts out something far away from what he really means, often precisely the opposite. If I tell him he’s done using his iPad for the day, he might exclaim, “No iPad, ever again! Throw it away!” Last weekend, we were zip-lining with a group that included three other kids, two girls and a very kind boy who spoke several times with Martin. Made nervous by the attention, Martin eventually blurted, “You should stop talking and go away.” Plainly Martin did not mean what he said; after the excursion was over, he sought the boy out to say he’d had a good time with him and was glad he came. As I wrote in February, sometimes words come into Martin’s head that he knows he shouldn’t say, but he can’t stop them before they come out of his mouth.

At least we have reached a point where Martin catches himself immediately. As soon as he says, “You’re the worst mommy in the world, and I don’t love you,” or, “Let’s not go out to dinner anymore, ever,” he covers by adding, “Kidding! I’m just kidding! I’m not serious.” I would, of course, prefer that Martin catch himself before issuing the offensive or nonsensical words instead of after. Maybe soon? As long as he is still covering with an immediate follow-up, I am trying to get him to switch from “just kidding” to a response more like, “I’m sorry. I didn’t mean to say that. Sometimes the wrong words come out.” But because nothing can be easy in AutismLand, the problem with my proposed new response—“I’m sorry. I didn’t mean to say that”—is that Martin already apologizes too much, habitually. When interactions come off foreign to him, he finds it most expedient to assume he’s made a mistake and to apologize. Helping Martin navigate social encounters, as he increasingly seeks them out, can be equally puzzling for me.

I am so thankful that Martin has closed the door on fascination with race and ethnicity. I hope the door stays closed for him. Unfortunately, I can’t put the chapter behind me, yet. I have let some months pass since my last attempt to speak with my church friend. This fall, when we return to the States, I will renew my efforts. It’s not about saving the friendship, or what she thinks of me and my family. Instead, in today’s USA, I think, racism and anti-Semitism and all sorts of hateful speech have been normalized. I can’t let the episode go if there is any suspicion that my son, however unwillingly, contributed to the atmosphere of pervasive racism. I want to explain. But what will I say? Even for parents of spectrum kids, it’s so hard to understand what would prompt a boy from an Hispanic household, whose parents speak out for equality and intentionally seek relationships outside their own community, to make seemingly racist comments that he doesn’t even mean. To explain that to a person with little experience with autism, to whose own child one of these comments may have been directed? I don’t even know where to begin.

Otra vez, aquí estamos. Hasta Septiembre

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

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

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

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

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

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