Searching the Storm for Silver Linings

It’s 6:53 a.m. I’m sitting on the commuter train to Manhattan, where I will transfer to a subway to my office. The train, which was scheduled to depart at 6:45 a.m., has not left the station (our community is the train’s origin), because a door is stuck open. Here we sit, waiting.

This morning, the train feels like a metaphor about Martin’s recovery: All ready to go, everything operational, until something unexpected jams the trip.

Martin talks a lot these days, and he has no filter, and it’s getting him into hot water with children and adults alike. Here are the texts I received yesterday from the behaviorist at Martin’s school (edited for length and clarity):

Problem this week was really filtering. I did take Martin out of class today. He was telling some boys on the carpet they were dead. Boys said stop. Teacher told Martin not to say that, it is not funny. He said yes it is and repeated laughing. She then asked him to move his seat and come sit by her (class was on the carpet). He told her no and continued to laugh and repeat.

At that point I stood up and told him to come with me to the hallway. He said please no. I just gestured and he came. I spoke to him sternly outside.

I told him no more trying to be funny. He is saying hurtful things. I typed up the “hurtful things” he said this past week and went over them with him. The speech teacher will do that as well.

[Here she forwarded me a photo of the write-up of “hurtful things” Martin has said. The worst was telling a girl she should not be in the school because of the color of her skin. Martin doesn’t believe that (I hope). He’s been perseverating all month on Martin Luther King, Jr. and his accomplishments. I’m guessing that he interpreted his comment as funny based on the absurdity of past discrimination. Still, hearing that Martin had utter such a remark sent my emotional state tail-spinning.]

The aide who covers specials also made a very good observation. She said some of the boys who play sports together are very friendly and in gym they purposely bump into each other, play footsies, etc. Martin sees this behavior and then of course when he tries to execute it does so in an inappropriate fashion or at an inappropriate time.

So the boys are joking around. Martin observes this and then doesn’t understand why when he does it it’s not right.

Yesterday, at church Kids’ Club, I heard Martin yelling, during kickball or some other game in the gym, “Raise your hand if you’re native!” He meant Native American. The term came up this week, when Martin asked me why Northwest Territories, Nunavut, and Yukon are Canadian territories instead of provinces, and I tried to discuss former European colonies versus territories with more First Nation and Inuit influence. On some level, I know that Martin is genuinely curious about the relationship between native and colonizing populations. On a more immediate level, I am horrified that the expression of his curiosity is demanding to know who among his church peers has native heritage.

I’m at my office now. That commuter train I was sitting on—it got cancelled. The maintenance crew couldn’t fix the door. All passengers, including me, had to gather their belongings and catch the next train, scheduled 34 minutes later. The business call I was planning to take form my office at 8:00 a.m. had to be rescheduled. The later train, of course, was crowded and uncomfortable.

But at least I had a seat; by the second stop, onboarding passengers were standing in the aisles. At least I waited the extra half hour inside a train; passengers at all subsequent stops were standing outside, in the cold, on the platforms.

At least I had a home to come from, and a job to go to.

At least Martin is talking, and attending school.

One Strike, Almost a Second Strike, and a Continuation

We had the talk with Martin.

Or at least we attempted the talk.

I’m talking about the talk described in my last post.

That talk. The one in which we discuss with Martin how he really is different from other kids.

When Adrian and I met with Martin’s psychologist, she didn’t advocate for revealing Martin’s diagnosis (“ADHD with social-pragmatic language delay”). Instead, the said the better approach might be to talk with Martin in terms of what he’s good at (say, memorizing facts, or learning geography), what he’s pretty good at (say, math), and what still gives him trouble (say, paying attention, or knowing what people mean when they interact). Then we could point out how everyone has a third category: Everyone has trouble here and there.

Adrian and I, strategizing, decided to raise the topic when we went out to dinner Sunday evening. That was my idea. Martin gets nervous when we ask to speak with him at home, because he thinks he’s in trouble. We eat Sunday dinner in a restaurant nearly every week, Martin feels comfortable in that setting, and we make him talk with us anyway, in order to practice manners and to reduce time looking at an iPad or iPhone screen, which is what he’d prefer to be doing. Sunday afternoon, I made paper charts with three columns:

  1. “Things I’m not so good at.”
  2. “Things I’m pretty good at.”
  3. “Things I’m very good at.”

There was a chart for each of us. I thought we could take the focus off Martin by discussing, first, my and Adrian’s weaknesses. After we ordered, I distributed the charts, presenting them as a “fun family activity.” Into column 1, on my chart, I put music, not being anxious, being on time, and paying attention. Into column 2, I put talking to friends, meeting new people, sports, and cooking. Into column 3, I put math, taking written tests, and writing. (Feel free to dispute whether “writing” belonged in my “very good” column.) Adrian admitted that he stinks at soccer, cooking, and being patient, said that he’s pretty good at speaking English (not his native language) and singing, and claimed to be very good at reading and being on time. I struggled to make out most of what Adrian wrote, so I grabbed his chart and added “writing legibly” to the “not so good” column.

Martin went straight for column 3, “very good at”: taekwondo (debatable), skiing (getting there), drums (still figuring out), and spelling (no doubt). In column 2, he included reading (I agree, if we mean straight-up reading, and not reading comprehension) and being patient. Then he stopped, before getting to column 1, “not so good at.” He asked me what he’s not so good at. I replied based directly on something he’d previously told me. “Remember how you told me other kids have better handwriting? So maybe something you’re not that good at is coordination.” “What’s ‘coordination’?” “Coordination is being able to write neatly, or move without bumping into things, and stuff like that. Daddy also doesn’t have much coordination.” “How do you spell ‘coordination’?” “What do you think?” “C-O-O-R-D-I-N-A-T-I-O-N.” (Because, spelling.) He wrote “coordination,” then added “basketball.”

I thanked Adrian and Martin for filling out their charts and began the soliloquy I’d rehearsed, about how everyone has skills that come easy and tasks that make them struggle. I completed less than a sentence before Martin interrupted me to ask, “Is anyone going to see these lists?” I said no, the lists were just for our family to see. Martin flipped his chart face-down and said, “I think we should put these away in case a waiter sees.” I gathered the charts and tucked them into my purse, then resumed speaking. Martin interrupted again, “I think maybe the waiters can hear you.” I promised to speak more quietly. He said, “I don’t want to talk about this.”

Adrian spoke up. “I think maybe Martin would rather have this conversation at home. Is that right, Martin?”

“Yes. At home.”

Strike one.

We got home late (by nine-year-old standards). I did Martin’s supplement routine and got him into bed. Adrian joined, and we restarted the discussion. As soon as I got to the part about everyone having struggles, Martin declared, with finality, “I’m not good at coordination,” then tried to change the subject. I, ever tenacious, suggested other struggles, again from his own prior statements, like his eyes wandering from the page or understanding what peers mean when they speak. Martin said, “I don’t want to talk about this.” I tried to convince him to have the conversation, that discussing strengths and weaknesses helps us understand ourselves. He rolled over and buried his face in a pillow.

It looked like we were headed for strike two, so I threw a Hail Mary. (Apologies for switching sports in my metaphors. I was going to say that I swung blindly, but that’s hardly a way to avoid a strike.) I said, “Do you remember when you said that you’re not a normal kid? Well, no one is a normal kid. There’s no such thing as a normal kid. Every kid has strengths and weaknesses.”

Martin turned his head enough to look at me from the pillow. “No one is normal?” he asked.

“Nope, no one. Even if you can’t see other kids’ weaknesses, they still have them.”

Martin shoved his face back into the pillow, but I could see him nodding in agreement. Good enough. Adrian and I said our goodnights and left.

This is destined to be an ongoing conversation, we decided. We must continue encouraging Martin to discuss his differences and how they affect him. I’m also questioning the wisdom of not revealing his diagnosis. In my head, I’m pursuing a conversation with Martin that opens this way: “Martin, have you ever heard of ADD? It’s a condition that affects a person’s ability to concentrate and pay attention. It’s not the person’s fault. If a person has ADD, her or she can treat the condition and make it better. You have ADD. It’s not your fault. You take all these pills to help make the ADD better.” I’m not sure where that will go, and I have yet to run the idea by Adrian.

The deep, meaningful conversation I hoped to be describing in this post hasn’t happened. So, alas, I need to end this post the same way as the last:

Stay tuned.

Time to Tell

In my last post, I wrote this:

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

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

This week, Martin followed up, in bed, during our “little chat” (which has become a nightly ritual). He said, “I need help with being shy again.” I asked what he meant, since he’s been doing so well talking to people. He replied, “I’m not doing it right. They don’t answer back.” I asked, “Do you mean how kids sometimes ignore you?” I’ve seen that happen, at school or taekwondo. Martin, in his eagerness, calls out, “Hi, Abby!” or, “Hi, Caleb!” and waves awkwardly as the other child pretends not to hear or makes a face and looks away. Kids can be despicable. Martin replied, “I said thank you to the waiter and he didn’t say ‘You’re welcome’ or anything. I need someone to help me do it right.” So in this instance Martin appeared to be talking about when he issues a comment without making sure he has the recipient’s attention. Most likely he had his face buried in an iPhone or the menu when he said thank you, and the waiter failed to realize he’d been spoken to.

Our little chat about shyness came on the heels of Martin declaring, the previous day, “I’m not a normal kid!” When pressed, he said that his eyes wander. I asked if he meant how he can have trouble looking people in the eyes when they speak. Martin’s eye contact during speech, for what it’s worth, is much improved. Eye contact no longer seems to make him uncomfortable; these days, instead of avoiding eye contact, he just seems to forget to look at his conversation partner. Martin said, “No, like when I’m trying to read. I want to look at the words but my eyes wander away.” Ah. An attention issue.

I relayed both conversations to Adrian. Then I asked him whether we want to reconsider the decision not to tell Martin he has a diagnosis. Together, we decided that the time has come to tell Martin that, indeed, something makes him different from other kids. We reason:

  1. His current diagnosis is ADHD with social/pragmatic language delay. Right or wrong, people find “ADHD” less scary than “autism” (in case Martin starts talking about his diagnosis).
  2. Previously, hearing that he has a disability might have been disheartening. Now, by contrast, we can point out that talking, fitting in, and acting like the other kids are getting easier—Martin has said as much, himself—and will continue to improve.
  3. His self-esteem needs a boost. He sees the discrepancies now, sees himself on the fringe. He needs to know that he’s not a bad kid; he has a body invader called ADHD that we are working on evicting.

We’ve got an appointment tomorrow morning with Martin’s psychologist, for her advice on how to tell Martin, which we hope to do as soon as this weekend. Right now the conversation looms large. On the other hand, a tiny part of me thinks Martin will respond with something like, “Yeah. I already know that.”

Stay tuned.

Awareness

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

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

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

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

That was in September. Since then:

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

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

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

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

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

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

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

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

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

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

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.