Everything Is Wrong

These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has “tanked” before—but never so dramatically, or for so long.

That’s not why I haven’t been posting to my blog. I promised honesty about the disasters as well as the pinnacles, and I’ve followed through on that promise. No, I haven’t been posting because I started a new position in August (if you’re keeping track, now I have two jobs, both part-time), and that combined with meeting Martin’s needs (the cooking! all that cooking!) has kept me awfully busy.

Yes, I’m “doing too much.” Yes, that’s part of who I am. But I love both of the positions in which I’m working. My only worry is whether I have time to meet Martin’s needs. On that point, I must be scrupulous.

The troubles began last summer, in Costa Rica. Martin started feeling like he had to pee constantly. He might finish going to the bathroom, wash his hands, and return five minutes later. He sometimes required three trips to the bathroom before we could leave the house for camp. When I asked whether he really needed to go, he might reply that he thought he needed to, or that he wanted to “adjust” his privates. Clearly, some irritation was plaguing Martin.

Next came the physical tics. The first tic was thrusting his index fingers into his nose and then his mouth. Not picking or fiddling, thank heavens, but thrusting. Often. By the time we returned to the States and Martin started fourth grade, he had added eye rubbing. He pushed his knuckles roughly into eyes, then moved his palms in circles on his eye lids. His eyes looked red and sore.

The nose-mouth tic faded, only to be replaced by a need to touch his genitals and then his backside, almost ritually. You can imagine what this did to all those fledgling friendships Martin had been assembling toward the end of third grade.

Desperate, I allowed Martin’s New York doctor to put him on antibiotics. I had to hit desperation before we tried antibiotics, because antibiotics are destructive to gut health, and poor gut health has been one of Martin’s toughest health issues. Long-term antibiotic use, however, is known as an effective treatment for PANS. We believe Martin is suffering a PANS flare, and when you see your 10-year-old constantly frustrated because he feels compelled to touch his private parts, even in front of other kids—let’s just say you’ll try almost anything.

The self-touching did fade, thank heavens, only to be replaced by a verbal tic. Beginning in December, Martin lost control of his mouth and, in response to the slightest frustration, blurted inappropriate phrases. I mean really inappropriate. It’s no longer limited to, “I hate you,” or, “Stupid!” He’s called his teacher, and me, “bitch.” He told his classroom aide, “Die, scumbag!” His classmates are “idiots,” whom he informs, “I have a girlfriend in second grade. We’re having sex.” (“Please believe me that these are not phrases that are used in our home,” I begged his teacher one day, unable to account for the behavior.) Often, after Martin says such things, he becomes upset and apologizes: “I don’t know why I said that! I knew it was coming out, but I couldn’t stop it in time!”

As is characteristic, Martin’s skin has been a mess since this ordeal started. He claws at his arms and legs, which are marked with bloody spots and recent scars. Mornings and evenings we massage him with CBD oil. The CBD oil helps but doesn’t resolve the irritation, which originates from within.

Martin’s school team—his teacher, his classroom aide (shared with another student), and his behaviorist—are terrific. They understand that the behaviors are out of Martin’s control, so he is not punished, not even for the most egregious name calling and acting out. (If I were a teacher, being called the b-word in front of other pupils, I might not have had the same self-control.) They’ve come up with a incentive-based rating system: Every day we receive a sheet rating Martin’s behavior from one-to-five stars, with a number of categories (“Did I keep my hands to myself in the hallways?” “Did I use kind words during recess?”) and a space for comments. Evenings, Adrian and I discuss the report with Martin in the least threatening way possible, and strategize for how he might do better.

Last week, Thursday and Friday, Martin finally had two five-star school days, with no inappropriate language. Saturday, my brother Eddie took Martin to the City for one of their “big adventures” and reported excellent behavior. Saturday evening Martin vomited his dinner and went to bed early. Throughout Saturday night and Sunday morning, he vomited. Sunday he voluntarily spent the day in bed, without complaining. By Sunday evening he felt better enough to start eating again, and he asked me not to cancel a pre-planned playdate Monday morning—it was the Martin Luther King, Jr. holiday, so the kids were off from school—with Ryan, a boy from last-year’s social skills playgroup.

The playdate went really well. Ryan is a year younger than Martin, with corresponding developmental delays. The two conversed fluidly, albeit about unusual topics. They were, for example, both incensed with the school district’s decision to have classes the day before Thanksgiving 2018, when that day was off in 2017; this gave them 10 minutes’ conversation or more. After a while, Martin wanted to fall back onto his standby, screen time. He asked whether Ryan wanted to play Fortnite. “I’m not allowed to play Fortnite,” Ryan replied. To my relief (I was eavesdropping from the kitchen), Martin said okay and suggested LEGO instead. They played LEGO.

Could we finally have turned a corner? I asked myself. Two five-star days at school, taking care of himself while sick, and now a successful playdate?

Hope is a train I shouldn’t always board. It sets me up for deflation.

Tuesday, Wednesday, and Thursday this week were three-star days, or worse. On several occasions Martin tried to hit other kids. To hit other kids.He’s never been a hitter. And he was throwing the word “idiot” around.

Here’s the summary of right now: Martin has been on antibiotics eight weeks. The constant bathroom-going and most of the physical tics have ceased, though not soon enough; he has lost virtually all the friends he gained last year, when he had such a tremendous spring semester. His state of being cycles from anxiety to meltdown to uncontrolled silliness. He loses control over what comes out of his mouth.

I’m trying to focus on what’s happening on a deeper level. Martin is conversant, much more than he used to be. He is self-aware, and sorry for the consequences of his behaviors. His inference skill has improved, and with it, his reading comprehension. He had such a good weekend that I’m starting to believe we might be getting close to leaving the PANS, or whatever it is, behind.

And he’s trying.

But today he told his teacher he’s going to “blow up the school.”

Here we are.

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.

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.

Conversation, Y’all

In my law practice, we work with an attorney from Texas who likes to throw “y’all” into sentences, even in email. She writes, “Think y’all need to flesh out that argument,” or, “I’m going to that hearing, and y’all should too.” As a literary device, her “y’all” is most effective as a lead-in or closer, like, “Y’all, we cannot take that case,” or, “Think that one through, y’all.” The concluding “y’all” is grandiose. When this attorney ends a sentence with a comma and “y’all,” I think, Did you get that? Did you pay attention? Because she was talking to you.

Being New York born and raised, I’d sound silly if I tossed y’all around the way my co-counsel does. So when I do choose to conclude a statement, especially a mono-word declaration, with a y’all, let’s agree that it’s extra-grandiose.

Conversation. Conversation, y’all.

Finally, we’ve got conversation. The kind of conversation that involves listening and responding to the partner.

Our family employs a housekeeper who comes weekday mornings, usually arriving just before Martin and I leave to catch his school bus. One day she was surprised to find Martin playing in the family room, and me away from home. (I had an errand to run, and by previous arrangement would be returning to retrieve Martin and drop him at school; Adrian was in his home office, working.) Given that Martin has always shied away from speaking with her—until recently, he buried his head in the sofa pillows whenever the housekeeper addressed him—she was even more surprised to have this conversation with him, subsequently relayed to me:

HK: “Martin! Why are you at home? Don’t you have to go to school today?”

Martin: “I am going. My mom is coming home to take me.”

HK: “If you want, I can drive you over now.”

Martin: “No, it isn’t allowed for anyone different to drop me off.”

Martin and I are spending the coming summer in Nicaragua. (Remember this post? More details later.) One morning, over breakfast, Martin asked, “How many days will we be in Nicaragua?”, and I replied, “Sixty days. All of July and August.”

Eight hours later, in the car, without additional prompting, the following conversation ensued:

Martin: “July and August each have 31 days.”

Me: “That’s true.”

Martin: “But you said we will be in Nicaragua only 60 days?”

Me: “Good point. What is 31 plus 31?”

Martin: “Sixty-two.”

Me: “So we will be gone 62 days.”

Martin: “Mommy, is Nicaragua going to be the longest trip you’ve ever taken?”

Me: “No, once I was in India for several months. I was studying there.”

Martin: “Will Nicaragua be the longest trip I’ve ever taken?”

Me: “Yes.”

These are conversations, y’all. They involve give-and-take. They require response to what the conversation partner has said.

I’m excited, of course. And there’s a caveat, of course. Most of Martin’s conversations still revolve around what fascinates him: right now, bridges, geography, and names. So while he’s made progress thinking dynamically enough to add to a conversation, he still needs to reduce his rigidity and apply that dynamism to a variety of topics.

Y’all.