Ultima Actualización de Nicaragua: Diagnóstico

I still remember the first time I was asked if Martin had a diagnosis. That first time, it came as an indirect question. It was November 2010. Martin was two years and four months old. We had no official diagnosis, only my high-school friend’s assessment: “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.” Martin had stopped pointing and started posturing, squatting to crunch the pain in his gut. He’d also lost eye contact. He’d done more than lost eye contact. He was aggressively avoiding eye contact. Whenever he perceived a face near his, he thrust his eyes sideways.

“Yeah, what is that? Is something wrong?” A friend asked. Martin, bundled in winter gear and strapped almost immobile into a stroller, was still managing to turn his head, move his eyes, anything to avoid looking at her. Unprepared, I fumbled an answer, “Um, technically, I think some people might call it ‘high-functioning autism,’ but we’re still figuring things out. Probably it’s fine.”

Here is my last post on Nicaragua (this year, at least): I can’t remember, since November 2010, ever going two whole months without being asked, “Does he have a diagnosis?”

Thank you, Nicaraguans and ex-pats. Thank you for not caring about a diagnosis.

Actualización VI de Nicaragua: Un Projecto Comunidad

We’ve returned, reluctantly, to the States, and I’ve got some time to reflect on the Nicaraguan experience.

I think one reason that Martin felt so at home in Nicaragua—one reason that we felt so at home in Nicaragua—was that Martin seemed to become almost a community project, among both the ex-pats and the Nicaraguans with whom we interacted.

Martin loves to zip-line. We had two adventure parks near us. The first park created a “good-customer discount” for Martin: As long as someone accompanied him, Martin participated for free. The second park held a staff meeting and decided that because Martin is un niño nervioso—an “anxious boy”—he should receive 30% off all adventures, so he could build his confidence through outdoor activity. Martin’s favorite seafood restaurant served octopus with dairy-based garlic sauce. Martin loved the octopus, so the kitchen workers took it upon themselves to create an oil-based garlic sauce just for him. Waiters, gatekeepers, and cuidadors went out of their way to greet him. A local surf shop, owned by a German national, outfitted Martin with a collection of its beach wear, for free, on the basis that having a cool look would help Martin feel good about himself. We didn’t ask for these accommodations. They just happened, because, apparently, un niño nervioso needs a boost now and then.

And in Nicaragua there was never a question about whether Martin could accomplish something, just how to go about it best. I volunteered to send Samara to day camp with Martin, as a sort of helper/aide. Not necessary, the directors told me the first week; he was doing fine independently, they said, and Samara would coddle him too much in front of the other kids. “Would you let me teach your son to surf?” asked one of my coaches at the local gym, also a surf instructor. “If he can ski and skate, I know he can surf.” The third-and-fourth-grade teacher at the international school encouraged me to consider enrolling Martin there. She said, “My background is in special education. I know he’d fit right in, in my classroom.”

Once, when we were out to dinner, Martin asked permission to leave our table and eat with a half-Nicaraguan friend, Alejandro, and Alejandro’s American grandfather. (Martin had his iPad, and the boys decided to play Minecraft together.) The next day I encountered the grandfather and struck up a conversation. “You might have noticed Martin has some social challenges. I hope he and Alejandro weren’t too much of a handful at dinner.” The grandfather responded, “Oh, really? Funny. After your family left the restaurant, I said to Alejandro, ‘Did you see how Martin always extends his hand and introduces himself? You should learn to do that’.”

I was tickled pink.

Not that everything Nicaraguan was perfect. The day camp, with its week-to-week enrollment, had regular turnover, and the second week Martin experienced some pretty intense bullying. I witnessed it myself: At drop-off one morning, at the local park, Martin said hello to a group of five kids. One by one, those kids picked up their backpacks and moved to another area, without acknowledging Martin. Appearing confused, Martin followed them and said hello again. The oldest boy, without looking at Martin, said, “I see something really interesting over there. It’s a tree. I’m going to see the tree,” and left. The other kids promptly followed. Martin, realizing he’d been rejected, climbed onto a swing, alone. When two pick-ups arrived to shuttle the kids to the camp, these kids piled into one truck’s bed—safety advocates, I know! but when in Rome . . .—then blocked Martin from getting in, telling him that all the spots were reserved for their friends. I was standing nearby, so I said, “I don’t think you can reserve the spots. Let Martin sit.” A girl in the bullying group, about seven years old, looked me directly in the eye and said, “No, we can do whatever we want.” (I was taken aback. I don’t know any child who would speak that way to an adult, much less an adult who is a stranger to her! This girl, dear readers, was simply a brat.) I contacted the camp directors the same morning, and fortunately, they jumped on the situation immediately. By Friday afternoon, Martin was calling the bullying group’s ringleader “a kid who wasn’t kind to me at the beginning of the week but then got nicer.”

Taekwondo didn’t work out so well, either. Martin does taekwondo in the States. It’s a gentle program, with three or four instructors for the 45-minute classes and a series of ten belts, which are earned for learning sequences of kicks and punches. Taekwondo in Nicaragua, at the only dojang in town, was serious business: two-hour classes, one master for more than twenty students, four belts awarded at the master’s discretion, and sparring for everyone. Martin couldn’t follow and shied from kicking and being kicked; he’s not ready to spar. The master didn’t seem to understand when I explained Martin’s challenges and often seemed annoyed or frustrated with Martin. Halfway through the summer, when Martin asked if he could “maybe stop doing taekwondo until we get home,” I agreed.

Fortunately, isolated bullying and advanced taekwondo didn’t ruin an amazing summer, or the perception that our Nicaraguan community was rooting for Martin’s success. In the States, I have that perception from the autism-recovery community—but not much more widely.

Martin didn’t accept the offer for surf lessons, I should mention. He says he’ll try surfing next summer. Because we’re going back to Nicaragua next summer. Was there any doubt?

Actualización V de Nicaragua: Hoy Comienza un Año Mejor (Esperamos)

This is a follow-up to my last post, on Martin’s questions about Otto Warmbier.

More conversations have been happening. Last week, Martin initiated this dialogue with me:

Martin: “Mommy, even though the other kids made fun of me, I still think I had a pretty good year in school last year.”

Me: “You thought there was more good than bad in the school year?”

Martin: “Yes.”

Me: “How about this summer at camp? Did you feel like the kids at camp made fun of you, too?”

Martin: “Sometimes they did, but like less than at school.”

Me: “Was it a good summer at camp?”

Martin: “I think it was a good summer.”

Me: “I remember, when I was little, how sometimes kids made fun of me. I didn’t like that. It hurt my feelings.”

Martin: “When did they stop making fun of you?”

Me: “I would say things changed in high school. That’s when I found new friends, more like me, who had some more interests like mine.”

Martin: “High school?”

Me: “But you never know. It could get better every year. Third grade might be a lot better than second grade. You’ll have new kids in your class.”

Martin: “Yeah. I think third grade is probably going to be pretty good.”

Posted without additional commentary.

Actualización IV de Nicaragua: Korea del Norte

Martin’s new thing is to request “a little chat” before he goes to sleep. “Mommy, can we have our little chat? Then can you send Daddy in for a little chat?” Participating in the little chat requires me to climb into bed and lie next to him as he answers questions about his day, talks about what’s to come, and then requests a nighttime assurance of how much I love him. “Do you see the ceiling fan, how it spins?” I say, or something similar. “Imagine how many times it would spin in a million years. Put that number with every drop of water in the Pacific ocean. You can add in the Atlantic and the Indian oceans, too. Those spiders in the jungle? All the spiders in all the jungles, and all the legs on all the spiders and all the tiny hairs on all the spiders’ legs. Add that all together, and still I love you more.”

The nighttime chat also the time when Martin’s fears and anxieties bubble up—who’s been unkind to him, what he doesn’t want to do. I’m pleased to report that, since we came to Nicaragua, the fears and anxieties have been fewer and farther between.

Since we are living abroad, one topic we discuss frequently, both in our nighttime chats and otherwise, is geography and geopolitical concerns. Martin has memorized the seven nations of Central America by size, both area and population, along with their capitals and order from the Mexican border to the Columbian. He asked if we could make an excursion to Honduras, and I said no because I consider Honduras too dangerous. This got him interested in “dangerous countries.” I tried to explain other nations where I would not travel at this time, and why: South Sudan because of civil war, for example, or Syria because of domestic conflict, Venezuela because of mistaken government policies and newfound resource scarcity, North Korea because of an oppressive regime.

I wasn’t too surprised, therefore, when Martin began one night’s little chat by asking, “Do you know something funny about North Korea?” and then informed me that “a kid at camp” had told him a story about North Korea. I was instantly suspicious. Martin likes to make things up and claim he heard them from someone. Which kid? I asked. A new girl who’s older than he is and whose name he doesn’t know, he replied. Hmmmm. Okay. What was the story?

Martin proceeded to tell me that there was an American boy who tried to take a poster he wasn’t supposed to take in North Korea, and so just because of the poster the North Koreans punched him in the head so hard that he went to sleep for two years, and when he woke up from being asleep for two years, he died and it was very sad.

As Martin rambled, relaying the tale the nameless older girl had given him, I realized that this wasn’t made up at all. He was giving me the basics of the fate of Otto Warmbier, the University of Virginia student arrested January 2016 in North Korea for allegedly stealing a political poster from a restricted floor in his hotel. Plainly, Martin actually had been told this story, and accurately was repeating to me what he’d been told.

Martin concluded by asking me whether this North Korean tale really had happened.

I’ve never before witnessed this level of engagement from Martin. It hasn’t been so long since I was overjoyed when Martin became able to tell me whether his sneakers were at school. This North Korea discussion was so far beyond answering basic questions. Martin must have been talking to this girl at camp, listening to what she said, and comprehending the information. He retained the story basics and sought confirmation at home. He initiated the conversation with me.

I didn’t bother correcting any details, like whether we know punches to the head caused Warmbier’s death, or that he was detained 18 months instead of two years. I said, “That terrible story is true. Those things happened to a young American man who was visiting North Korea.”

“What was his name?” Martin asked.

“Otto Warmbier. He was a student at the University of Virginia.”

“When did he die?”

“I can’t remember. It must have been a couple months ago now.”

“I think he died the first week I had camp.”

“You might be right.”

“It’s very sad.”

I could see Martin becoming anxious, so I said, “It is very sad. North Korea is a dangerous place. But do you know what? Nicaragua is not. You are safe here in your bed. Abuela is sleeping in the same room, and who else is in the house? Samara is here, and I am here, and Daddy is here. And who’s outside? Señor Pedro is outside. You are safe.”

Señor Pedro is our house’s cuidador (the caretaker or nighttime guard), who has a room in the garden. Martin loves Señor Pedro.

Once Martin was reassured and asleep, I went on-line to check when Otto Warmbier died. June 19. Martin started camp Monday, July 17, so no. He was off by a month. I don’t know whether the girl at camp told him Warmbier had died the first week of camp, or whether somewhere in the background of his extraordinary memory was a snippet of news he’d heard/seen and mistaken the date.

But I do know this: I am a closer than ever to knowing how it feels to converse typically with my son.

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.

I Mean, I Just, It’s—Well, It’s a Lot

You may have noticed I just took a couple months off from Finding My Kid.

I mean, I’ve still been finding my kid. I just haven’t been blogging about the process.

These last couple months have been some of the toughest of Martin’s recovery so far. We have arrived at a time when Martin perceives what other kids think of him, and wants to make friends and influence his own popularity, but lacks the tools to achieve those goals. Martin has social awareness without corresponding social facility.

The situation is crushing.

Since my last post, the classroom improved—at least by Martin’s own reporting, which grows more detailed by the day. “I saw a fifth-grader named Cody in the hall who I know from taekwondo, and I said ‘hi’ to him and he said ‘hi’ back, but then on the playground there was a third-grader named Alice who used to be on my bus and didn’t say ‘hi’ to me.” Since Martin spoke up for himself, his classmates have begun to show him more courtesy, and attempt to include him more, even if Martin doesn’t always reciprocate. Some days Martin even exclaims, “Oh, everyone was so nice today!”

Other days, when I retrieve him after school (he’s a “walker” now), he looks downright dejected. Or we will stay after school, on the playground, and I watch other kids reject him.

And he still seems haunted by the bus experience. Two months have passed, yet he still tells us how unkind the kids were, cries at night, and seeks assurance that no one from the bus will be invited to his birthday party. He worries that kids from the bus might be in his classroom next year.

Most problematic now is the playground, at recess with the entire second grade, not just Martin’s class. Martin reports that even the kids who are being much kinder in class do not want to include him on playground. These dispatches come daily: who wanted to play with him or didn’t, who told him to go away, who refused to answer when Martin asked a question.

We’re working with the school. The principal has agreed to pay for a presenter to come next year and speak to the entire third grade about differences and inclusion. (I wish now that we had thought to do this when Martin moved into public school last September.) She also substituted a fun-loving young TA for Martin’s regular one-on-one aide (a protective grandmotherly type) during recess, to organize games in which Martin can participate.

Martin’s teacher helps, too. A classmate named Ethan announced, repeatedly, delightedly, that he planned to invite every boy in class except Martin to his birthday party. The teacher pulled Ethan and Martin aside, where Ethan admitted saying that everyone except Martin would be invited, and explained that Martin had been annoying him by getting in his face before school. Martin said that he understood that getting in Ethan’s face might be annoying, and that he would try to do better with that. All in all, a decent resolution was reached—though I certainly don’t anticipate receiving a birthday-party invitation. Martin’s teacher also has given the principal input on what teacher Martin should have next year, and which boys should (and which should not) be in his class.

I will admit that I’ve gone so far as to consider changing Martin’s school again. Right now, that plan is in abeyance. Adrian wants Martin to stay put, Martin says he wants to stay put, and I have to admit the benefits of having Martin in the local public elementary. He finally feels integrated in the community: He sees the overlap between church and school and play group and taekwondo and even the local supermarket. We’ll see, though. If third grade begins with bullying, a change may be in order.

Action Plan

If last Thursday’s post worried you—and judging from the number of emails and texts I received, Friday’s post worried a lot of you—take heart. The events I described took place more than a month ago, and we’re still sallying forth.

That night, the night of Martin’s big disclosure, Martin cried some more in bed. Of the situation at school and on his bus, he said, “This has got to get better. Can you make this better?” We reassured him, repeated that he was brave and that we were proud of him for telling us what’s happening so that we can look for ways to help.

Once Martin fell asleep, Adrian and I convened for discussion. As upset as we were, we had to recognize that the dinnertime conversation was the most meaningful Martin had ever conducted. Adrian too had noticed the consistent eye contact and Martin’s determination to express himself, including how he’d pushed Adrian away instead of accepting a hug that might have ended the dialogue. Never before had Martin told us about social challenges, at least not directly.

Indeed, we saw progress. Martin wanted to play with other kids. Martin realized when he was rejected. Martin asked for help to remedy the situation.

But those positive aspects notwithstanding, we needed to take action. Immediately, I emailed the school principal and Martin’s teacher:

Principal C (also copying Teacher N to keep her in the loop)—

My husband and I need your help. We know Martin has a great team at school, especially Teacher N, and that you will be able to assist us in dealing with this situation.

We are having something of a crisis this evening with Martin. This afternoon he got off the bus looking very dejected. At the time, he would not tell me what was wrong. But he broke down during dinner tonight and said that all of the kids on front of the bus today (where he was sitting) pointed at him and said, “Stupid! Stupid! Martin is so stupid!” We asked him if this has happened before, and he told us that the kids on the bus have been calling him “weird” and “stupid” for some weeks now.

He went on to say that his classmates have been telling him that he is “unfriendly” or “weird,” and on some occasions have told him that no one likes him. He gave a lot of specific names of kids who say these things to him and, unfortunately, was not able to come up with one name of a kid who is currently being friendly to him. (We realize that Martin’s behaviorist has not been in the classroom that much this year, and that perhaps she is the one who should be catching these things.)

A lot came out this evening, and Martin cried the whole time. He said that no one will play with him on the playground, and will talk to him only to say they don’t want to play with him.

We told Martin that he is right to share these feelings with us, and that we will do everything we can to make it better. Before he went to bed, he asked, “Will there ever be a time when it is not like this?,” and then he asked us please to make it better as soon as we can.

Principal C, may I come and visit with you tomorrow (Wednesday) in order to talk this through and think about some strategies we can come up with to help the situation? I will stay home from work in order to do so. I have never seen Martin looking so down and so upset. He believes that he is completely friendless, and I think his self-esteem must be suffering.

As of tomorrow (Wednesday), he will be a walker, every day. I will deliver him to school and pick him up in the afternoons in order to prevent a repeat of what happened on the bus today.

We have been so happy Martin’s experience at school. I look forward to working with you to resolve this issue and help Martin move forward.

Thank you,

Martin’s Mom

Within ten minutes, the principal emailed back, inviting me to meet her the following morning, which I did, at 10:30 am. Remarkably, by the time I sat down in the principal’s office, the following events had occurred, which I relay second- or third-hand:

Martin, having been chauffeured to school by me, walked into his classroom and announced (to the teacher? to nearby students? to the wind? some details aren’t clear) that he was no longer going to be riding the school bus because the kids on the school bus are unkind to him. The teacher, aware of the situation from my email, asked, “Martin, is this something you want to discuss now?” Martin, apparently, said yes and proceeded to stand in front of the class and describe what the kids on the school bus had been saying about him, and that what they said wasn’t true, and that those kids just did not know him well enough.

Then, when Martin was done excoriating the bus riders, he continued speaking and addressed grievances with his classmates (none of whom ride the same bus). He repeated: “You say I’m unfriendly, but that’s not true. I’m trying to be friendly.” The teacher asked Martin how this made him feel. He said it made him feel bad, and sad, and not part of the class.

Once Martin’s diatribe was drawing to a close, the teacher asked Martin and his aide to go to the art room and retrieve some markers. “Class,” she asked those who remained, “did you have any idea Martin felt this way?” The kids shook their heads. One or two of the girls were crying.

An hour later, the principal passed Martin’s class as they walked to the music room. Martin signaled the principal and said, “I want to tell you what’s been happening,” and proceeded to speak once more about the bus.

I was happy to hear, from the principal, generalized agreement that we have a problem. She confirmed with my decision to take Martin off the school bus, saying we should focus our efforts on the classroom and the playground. As first steps, the principal committed (1) to see that the behaviorist visits Martin’s classroom more consistently (this has been an issue); (2) to check in with the teacher about any additional supports that might help; and (3) to increase playground supervision (from a distance, of course). Longer term, we agreed to convene a team meeting, which I would do through the school psychologist.

I left the principal’s office feeling troubled still but buoyed by her stated commitment to helping.

Coming next: How did that work out? Has school got better?