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.

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?

I’m the Issue

Back in December, I found myself volunteering at Martin’s class Chanukah party. I read The Runaway Latkes to the class, served latkes—I’d brought Martin’s from home—, and helped Martin’s desk cluster play Chanukah bingo. I also facilitated a dreidl game. Martin played dreidl without incident, but another boy cried or complained every time he had to surrender chips, and finally refused to play any longer, instead yelling, “I’m a sore loser! I’m a sore loser!” I was reminded of when the behaviorist told me, “Martin is not the behavior problem in his classroom.” Overall, the morning went smoothly for Martin, and I felt optimistic.

While I and the other parent volunteers were packing to leave, the teacher called the kids to the rug for another story time. The kids were fussing and settling, and the teacher said above the murmur, “Children! This book is scary! You might want to snuggle up with a good friend!” Everyone squealed and began linking arms into groups of two or three. Tristan immediately grabbed Spencer. Those are two boys I know. Tristan’s mom was born in the same country as Adrian. We have done play dates with Spencer (on a parent-organized, not child-initiated, basis). Martin gravitated to them also, and sat himself very close to Tristan. A second later, Tristan pushed Martin away, and even from the classroom doorway, I heard Martin ask, “Why not? Why can’t I be?” I don’t know exactly what Tristan said to Martin, but given that it followed “. . . snuggle up with a good friend,” I can guess. When I left, Martin was sitting alone, two feet from Tristan and Spencer, listening as the teacher began the scary story.

I worry so much about Martin’s self-esteem. It’s probably what I worry about the most, even more than his attention deficit and immaturity. I wonder how many times per day his self-esteem endures hits like Tristan pushing him away and saying he’s not a friend. The ten or so kids other than Martin at his morning bus stop are all girls, except a boy named Nathan. One of the mothers is pregnant with twins and just found out she’s having a boy and a girl. When she told the bus-stop crowd, Nathan’s mom said, “Oh my gosh, Nathan, are you happy? Finally another boy around the street!” She said this while Martin was standing next to her. Perhaps she confused social challenges with hearing, understanding, inferring.

Seeing the way the world treats Martin has caused me to do some hard reflecting, again, on the way I treat Martin, and how I might also be injuring his self-esteem. Multiple times each day, I become frustrated with Martin for behaviors that are likely outside his control. On any given morning, I might say the following:

-“Martin, why did you spill all the juice? Weren’t you being careful? This is expensive juice.”

-“Martin, I told you to finish eating while I got dressed. You haven’t eaten even one single bite!”

-“Martin, why can’t you just put your shoes on? Feet. Shoes. It isn’t hard.”

-“Martin, we are going to miss the bus! Listen! Pay attention!”

-“Well, that’s it. We’re late. Again.”

Or take this very afternoon, a Monday. I’m going to be honest here, entirely honest, even if doing so brings me to tears while I’m writing: I have been frustrated with Martin since the minute he returned from school. Everything was wrong: Last night I slept only three hours, because I was working on a memo. This afternoon I ended up doing more office tasks than I planned, and my lunch date was more than half an hour late, so I still had to make dinner once Martin was at home. Let me add—Martin had a fantastic weekend. He chatted conversationally, he had no meltdowns, he focused at taekwondo class. So I expected a fantastic today. I knew today would rock. And then it didn’t. Martin cried and complained his way through 40 minutes of homework (worksheets that should have taken no more than 10 minutes), and he still wasn’t done, not even close, when I called him to get ready for taekwondo. I reserved 20 minutes to get us out the door. Twenty minutes to put on a taekwondo uniform and sneakers. And yet we were late. Like junk expands to fill a basement, Martin’s needs expand to overflow whatever time he’s allotted.

My role in all this? I’ve spent the entire afternoon being unreasonable. I’ve told Martin to stop complaining, I’ve grown frustrated, I’ve blamed him for our lateness. I’ve told him to act like an eight-year-old instead of a baby. Once or twice I’ve raised my voice. Constantly I’ve thought, “I would like a glass of wine,” and responded to myself, “A glass of wine will not solve anything,” and then argued with myself, “I think it would.”

My attitude, this afternoon and many mornings, is problematic for two reasons. First, it is unfair unfair to Martin. It’s not that Martin “isn’t being careful”—it’s that his ADHD and lingering coordination issues make him clumsy and distracted. It’s not that Martin “isn’t hurrying”—he lacks the ability to focus. It’s not that Martin is “ignoring me”—listening and paying attention go to the very heart of his disorder. To be sure, some of his conduct may be behavioral. But most of it is not, and it upsets him to be reminded of his shortcomings.

Second, my attitude pretends like I’m not the issue.

If Martin is spilling juice, I am the issue. The juice should be in a safer spot, and in a spill-proof cup.

If Martin isn’t finishing breakfast while I’m getting dressed, I am the issue. I need to get dressed before Martin eats so that I can supervise him.

If we are not getting out of the house on time, I am the issue. If 20 minutes is insufficient time to prepare, then somehow I need (1) to find more time and (2) to organize so that I have nothing to do except shepherd Martin’s preparation. One might argue that Martin needs to be developing more independence; clearly, however, the “independent Martin” strategy is failing at this time. Maybe I can leave one, and only one, task for solo performance: teeth brushing, or bag packing, or sneaker tying. For now, I need to “scaffold” massively (think “build extrastructure”) and withdraw support as Martin’s attending improves.

The truth is—and I think most biomed parents will agree with this—it is very frustrating to spend almost every waking moment working toward recovery and still get hit with waves of perseveration. Still never get out of the house on time. Still wonder why the child never listens. Still endure moments of hopelessness.

But that truth doesn’t excuse me from acting like the grown-up in this relationship.

Epilogue

I wrote this post yesterday, Monday. When Adrian arrived home, I said, “It’s been an afternoon. Will you pour me a glass of white wine?” He noted that the only white wine in the house was a bottle of questionable quality that the pool company had dropped off before Christmas. I told him to proceed. I drank two glasses. I woke at 3:30 am with a headache. I took ibuprofen and went back to sleep, propped on pillows, then managed to oversleep until 6:00 am.

Despite being rushed, I worked swiftly and organized the morning well. Martin cooperated more than yesterday. I was so proud of us when we were ready for the school bus three minutes early.

After Martin departed, I realized I’d forgotten his after-breakfast supplements.

He arrived home with a report saying he’d needed an unusual amount of prompting during the school day, and had refused to participate in Valentine’s activities. Now he’s in taekwondo again, and instead of participating, he’s jumping.

Still, the grown-up in the relationship feels okay. Must be a sleep thing.

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Martin, at Chicago’s Adler Planetarium. He’s not the issue.

In Praise of the Wonder Kid

Right around the time Adrian and I were considering a second child, Martin was diagnosed with autism, and we put off the decision in order to focus on getting Martin help. The years since diagnosis have been therapies and special diets and supplements and doctor visits and too little sleep. I was almost 36 years old when Martin was born. By the time Adrian and I cleared our heads enough to think again about a second child, we would have been looking at a 40+ pregnancy. That, combined with the increased risk of having a second child on the spectrum if you already have one, sealed the decision. Martin would remain an only child. All of our resources belong to Martin alone, for his recovery.

But alas, a typically developing sibling sure might help. A brother or sister could provide a full-time role model and, if we were lucky, a buddy to protect Martin from neighborhood cruelty, from slights and oversights and bullying.

With that in mind, allow me to sing the praises of Martin’s cousin, Mandy, who is also an only child. Mandy and Martin were born only ten weeks apart and, though they live four hours away from each other, have known each other since babyhood. They get three or four solid visits annually.

When Mandy came to our home last August—Martin had already turned five, and Mandy was about to—they were finally old enough that I thought Mandy might need some explanation of why Martin seems different. Immediately, I found an opportunity to address the issue: Mandy and her mother (my younger sister) arrived after Martin had gone to sleep for the night, Martin’s regular sitter was at the house, and Mandy was hungry, so I volunteered to take them out for pizza.

Ah, to have a kid who can go out for pizza!

“Hey Mandy,” I said. We were sitting in the pizzeria waiting for our order. “Do you know how to read?”

I knew she didn’t.

“Well, guess what?” I asked. I dragged my voice, to indicate that something amazing was coming. “Martin already knows how to read!” Indeed, Martin started reading young. He read fluently (comprehension is a separate issue) by age four-and-a-half.

Mandy opened her mouth in astonishment and gasped toward her mother.

Ah, to have a kid who gasps toward mom when surprised!

I went in for the kill. “But, Mandy, you know what? You are very good at talking”—she is—“and Martin is not good at talking at all. That’s how it is: Some kids are better at talking, and other kids are better at reading.”

I wasn’t sure this little speech would work.

It did.

Mandy and Martin’s visit that August was delightful. Mandy, who is naturally bossy, in the best way possible, forced Martin to interact constantly, and she decided to talk for both of them. Upon Mandy’s request, and Martin’s acquiescence, they both slept in the big bed in our guest room, and I knew when they woke up because I heard the giggling start. One morning as I stood in the kitchen, they walked through. Mandy had Martin’s arm over her shoulder and was pulling him along by the wrist as she announced, “We decided to go outside.” Martin didn’t mind Mandy’s commanding spirit. It brought out his best. He responded to her every whim, including when she thrust paper upon book in front of him and demanded, “Read this for me!”

The big test came when Mandy had been with us almost a week. Martin had a hippotherapy session, and I brought Mandy along. While Martin was riding, Mandy befriended the farm proprietor’s seven-year-old granddaughter. I could tell that Mandy was impressed to be playing with an older girl, and I thought, This is it. She’s not going to be so eager to hang around Martin when this big kid was in the picture. Maybe she’ll even be embarrassed by her awkward cousin.

Curse me for that lack of faith. As soon as she saw Martin dismount the horse, Mandy scampered over, grabbed his wrist, and ordered him to come play. Then she tugged Martin to the seven-year-old and said, “This is my cousin Martin!”

Mandy came to visit again this February, when my sister and I took the two kids to see The Lion King on Broadway. Saturday mornings Martin usually goes to the Equinox gym with Adrian and plays in the kids’ club there while Adrian works out. The Saturday morning of Mandy’s visit, Adrian volunteered to take both kids to the kids’ club.

After they returned, I asked Adrian whether Mandy had still wanted to play with Martin at the kids’ club, or whether, when in a crowd, she had gravitated to the typically developing children instead.

Adrian reported that when he came after his workout to pick the cousins up, Mandy was indeed playing with the typically developing children.

… And, Adrian said, Mandy was directing those typically developing children to make sure they let Martin play, too.

Thank you, Wonder Kid. Thank you for looking out for Martin.

Mandy and Martin on the beach, August 2013.

Mandy and Martin on the beach, August 2013.