Tag Archives: school

Okay. Some Things Are Right

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I’m sorry. I left you hanging. I wrote a post titled “Everything Is Wrong” and then stopped posting. I’ve received so many emails over these last many months, expressing concern and wondering what happened.

January 2019, Martin “taking care of” the daughter of a friend.

I’m here to say that everything is no longer wrong. We have struggled through one of the most difficult years of Martin’s recovery from autism, and we are not back to baseline yet. The kid we had in June 2018—the one who made a handful of friends on his own and was “totally part of his class”—that kid is showing up a lot of the time, but he still hasn’t returned entirely.

Here’s the history, in brief: Last summer, in Costa Rica, Martin tanked. In order, fluidly, with overlap, the following sequence manifested:

–     Martin started asking to go to the bathroom constantly, sometimes only a minute or two after the last time he’d gone to the bathroom.

–     Martin’s genitalia started to bother him, and he wanted to touch/adjust, all the time, everywhere.

–     Martin developed physical tics, including putting his fingers ritually into his nose and mouth, and eventually adding his backside to the mix, then his elbows, prompting my brother Eddie, a Red Sox fan, to declare that Martin was learning baseball batting signs.

–     Once Martin got back to school, the physical tics were replaced by a kind of verbal tic, which made him blurt inappropriate words and statements.

–     Martin became obsessed with Nicole, a girl in another grade, singling her out whenever he saw her, even asking to visit the restroom so that he could bang on her classroom door.

These actions frightened little Nicole, who’s about half the size of Martin. That’s about when, on the advice of Martin’s New York doctor, we put him on antibiotics, the last resort. (Antibiotics may bring a PANS flare under control, but they also decimate gut bacteria.) Eight weeks after we started antibiotics, I told you everything was wrong.

Take a deep breath.

February 2019, Beaver Creek, Colorado. Martin (r) ice skating with his cousin Luke (l).

I don’t know whether the antibiotics helped. Based on timing, I don’t think they did. At the end of January we traveled to California to see Martin’s MAPS doctor, who created a plan for phasing out the antibiotics after three full months of use. She changed a number of antimicrobials, strengthened a few others, added detox helpers, encouraged us to hang in there.

We hung in there. So did Martin’s school team, I’m happy to say. They called a CSE meeting to switch Martin from a two-on-one aide to a one-on-one aide. Though the change felt like a step backward, Adrian and I didn’t object. There’s no point in denying reality. Then the behaviorist created a non-punitive behavior modification plan to help Martin stay away from Nicole. His aide, now responsible solely for Martin, started taking him into the hallway at the first sign of trouble, before his classmates could hear his inappropriate statements.

Slowly, far too slowly, the situation improved. Once Martin started to get control of his mouth in school, we went through a funny period: When my brother or I picked Martin up at the end of the day, he would smile and trot quickly to the car and, once inside with the doors closed, swear a blue streak. Random profanity. Utterly inappropriate comments not directed at any stimulus in that moment. Apparently Martin kept a steaming pot of threats and swear words inside himself throughout the school day and needed an outlet when he felt safe. So we let him pour them out. Day after day, Martin spent car rides between school and evening activities cursing like a sailor.

March 2019, Madison Square Garden. Martin “backstage,” waiting to confront the New Jersey Devils as they leave the ice.

That behavior, too, faded, down to an occasional “s—t” or “f—k,” sometimes under his breath, sometimes aimed directly at me to test the waters. He got control of himself around Nicole, mostly. The tics disappeared except for times of high stress.

In April came a major turning point. During the Easter/Passover break, Adrian and Martin took a weeklong trip to Spain. Just the two of them. I spent hours separating Martin’s supplements and other pills into baggies labeled “Monday wake-up,” “Monday breakfast,” “Monday afternoon,” and I created an abbreviated schedule for only the drops Martin needs most, mainly antimicrobials, so that Adrian would carry only one small container of bottles. Then I dropped them at JFK, and off they went to Madrid, Sevilla, La Alhambra, and Cordoba. I was terrified about how the trip would go. Martin was improved but still not himself. His anxiety was high, especially about food and food allergies, and for the first time they’d be without my services in finding and preparing meals. (Martin’s epi-pen went with them too, of course, in a sleek new carrying case.) So—fingers crossed.

April 2019. Martin in—Spain!

What happened? I don’t know, exactly. They had a great time, and Martin came back a different kid. His behavior improved, his anxiety dropped, and he became more focused. When he returned to school, he had his first week of five days without a behavioral infraction. (Again, his behavior-modification plan is non-punitive, so he’s not being punished for actions out of his control. His school team has been fantastic on that point.) The teacher and aide were so excited that on Friday they made a “Certificate of Achievement: Phenomenal Week” to send home. The next week, five more clean days. And the next week too. In all, Martin went three weeks and three days without a major infraction. When he finally did slip up, the behavior ended more quickly, and Martin responded well to correction.

Right now (school hasn’t ended for the summer yet, up here in the Northeast) Martin is having about one behavior infraction a week. In most cases, he makes some hurtful and provocative remark, like telling kids that he lives in a mansion and they live in a neighborhood with robbers. This is horrible, and for the record, we are privileged to occupy a lovely single-family home, but hardly a mansion, and there is no neighborhood beset by robbers in our safe little suburb. The comments seem to be a matter of impulse control: An awful statement comes to his mind, he blurts it out, and (immediately or later) he feels sorry. At bedtime he might say, “I’m a bad kid. No one can like me. Why can’t I stop saying these things?” or “Why am I obsessed with Nicole? Are kids scared of me?”

Also, he remains anxious. He’s anxious about whether he’s allowed to eat Frito-Lay products if they contain genetically modified ingredients. He’s anxious about how many kids can or cannot come to his birthday party. He’s anxious about school. And home. And the park. And his bed.

Yet he’s so much closer to baseline. I think we may even be beginning the slow process of fixing the damage—that is, the damage to his fledgling friendships. He made so much progress last year. It’s tough to keep friends when you’re telling them that you are rich and they are poor. This will take time.

About that trip to Spain: Adrian, whose country of origin is Hispanic, is something of an Iberophile. He has longed to share that with his son, especially to take him to La Alhambra. Their trip was a risk that delivered, in more ways than we could have anticipated.

He Belongs

Posted on by findingmykid
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Martin asked, “Why is this school year going so much faster than last year?”

I answered, “It can seem like time goes faster when you’re having fun. Do you think you’re having more fun at school this year?”

He said, “This year is way better than last year. The kids are so much nicer, because everyone knows me better now.”

I don’t consider myself a superstitious person. Yet I hesitate to post good news on Finding My Kid. I ask myself, What if tomorrow things go bad again? If I say today that Martin is doing well, do my readers assume that will always be true? Isn’t it easier to admit when we’re going through a tough time, and thus to set a lower bar that subsequently I can exceed? Am I going to jinx his whole recovery?

Martin has a handful of friends now—friends he made himself instead of in social-skills group or otherwise organized by me. Despite April’s unsuccessful play date, I think the friend situation continues to improve. What follows is a series of texts from last week with Martin’s school behaviorist, Debbie. If you are a regular reader of this blog, you may recall that I affectionately refer to the behaviorist as Debbie Downer, because she never seems to hesitate in giving bad news, which makes these texts all the more precious:

He’s totally part of the class now. Today was another [happy] tear-filled day. I just watched him interacting with his peers and them calling his name across the room to share in a private joke or ask each other questions.

I wish this year wouldn’t end for him.

We have so many kids that we can choose from now to request to be in his class next year.

You know, you probably could invite the whole class to his birthday party if it’s not too late. If you’re concerned about a lot of rejections you wouldn’t even have to tell him that you invited everyone. You would just be happy with whoever showed up.

You guys should be very proud of your little boy.

When I pick Martin up after school now, we cross the parking lot to the sound of “’Bye, Martin! ’Bye!” The other kids are talking to him.

Last week Adrian and I attended Martin’s IEP meeting, where this progress was confirmed. The speech teacher recommended switching from a mix of one-on-one and small-group instruction to small-group only, on the grounds that Martin progresses better when he has other kids to talk to, instead of being just with a grown-up. The resource teacher said the same thing she said at our last check-in: that Martin does not need resource room. The classroom teacher echoed what Debbie had said. We all decided that Martin no longer requires a one-on-one aide. Next year, he will share the aide with another student. The idea is to pair Martin with a special-education student who needs more academic support and less social support. Martin, who apparently no longer needs much academic support, won’t have someone looking over his shoulder in the classroom but will retain the benefit of the aide in the wild west that is gym class, lunch, and playground.

Friday before last, Martin was invited to a classmate’s birthday party. (The mom had invited every boy in the class, but still, Martin was invited!) The party was at an indoor track-and-field center, and chaos reigned. (The mom had also invited every boy in the twin brother’s class, plus friends from outside school.) Martin was hardly leading the pack; sports aren’t his forte. Still, he did fine and did not freak out or melt down—even when a boy who bullied him last year but has since switched schools showed up unexpectedly. Martin kept his distance from that boy and just did his thing. At one point, I saw Martin and the birthday boy from his class walking with their arms around each other’s shoulders.

Sorry about all the italics. How can I help it?

I left Martin’s IEP meeting feeling like a million bucks. Last school year was so difficult, and I constantly questioned whether we had made a bad decision when we pulled Martin from his self-contained special-education school and placed him in our local public elementary. Here was a team of professionals agreeing that Martin, finally, is bridging the gap and becoming more like a regular kid.

The same day as the IEP meeting, I attended an allergy-awareness presentation at the school. On the way out I ran into a church acquaintance, a mom I barely know but whose kids attend both school and Kids’ Klub with Martin. She looked confused and asked me what I was doing there. I said I’d also been at the allergy-awareness presentation. She still looked confused, so I asked, “Did you know Martin goes to school here?” She replied, “No. I had no idea,” and then added, “Martin goes to this school?”

As a special-needs parent, I have a tendency to perceive slights against Martin. I could have interpreted this mom’s question as geographic, i.e., surprise because she didn’t realize we live near each other; our district has several elementary schools. But of course I didn’t interpret her question as geographic. I assumed that what she’s seen of Martin at church has convinced her that he doesn’t belong in mainstream school with her kids.

I said, “Yes, Martin goes to this school. Did you think he isn’t good enough? Why would you suggest that to me? I have news—your kids are hardly brilliant.”

Just kidding.

I said, “Yes, Martin is in Mrs. B—’s class.”

And I thought, “That’s just where he belongs.”

Searching the Storm for Silver Linings

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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.

I Mean, I Just, It’s—Well, It’s a Lot

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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

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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?

Polar Bear Under Siege

Posted on by findingmykid
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Studies have found widely varying rates of other psychiatric problems among people with autism, depending on the population studied and the methods used. Those co-occurring conditions include: depression (affecting 2 to 30 percent), ADHD (affecting 29 to 83 percent), OCD (1.8 to 81 percent), and other anxiety disorders (2.9 to 35 percent).

Look at the foregoing paragraph. Again, please. Now keep those statistics, disparate and divergent as they are, in mind as you read this post and the two or three posts that will follow.

Martin is in a general-education classroom for the first time. The other pupils don’t like him. We know.

Remember when I forecasted that language would come last? I was wrong. Aside from a lingering habit of pronouncing “th” as “f,” Martin’s phonology is solid. Semantically and syntactically, Martin comprehends and expresses himself at or above an age-appropriate level. His language is caught up, except for social/pragmatic language. What actually come last, it turns out, are social skills.

Adrian and I have been worrying about how the gap in social performance is affecting Martin’s self-esteem. Last month, we decided to have Martin start seeing a psychologist, to help him deal with feelings of rejection. I made the relevant inquiries with parents in town, and we were able to find a local practitioner who has significant experience with social anxiety and ASD/ADHD. Adrian and I met her first. We charted Martin’s course from birth (and outrageous unnecessary NICU) to present. We said Martin acts upbeat but we know he’s masking other emotions. I told her about the night Martin asked me whether it’s okay if no one likes him. The conversation with the psychologist made us sad, both me and Adrian. I’m pretty sure, because later I asked Adrian, “Did that conversation make you sad?”, and he replied, “That conversation made me sad.”

Martin visited the psychologist for the first time on a Monday evening. I brought him, and worked in the waiting area while he and the therapist met. At the end of the session, the doctor invited me in and showed me what Martin had created: A castle scene in which a hapless polar bear was beset by a crowd including dragons, knights, and several kitty-cats. The doctor made several statement/questions like, “The horse is the leader, and the unicorn is following, and the polar bear wants to go back inside?” Martin agreed with her. I surmised that her comments were made, at least partly, for my benefit, but if I was supposed to be following along, the doctor had wildly overestimated my powers of intuition.

The whole shebang, to me, seemed like get-to-know-you play, but—something happened. The psychologist unleashed a force. What it was, I don’t know. (Relatedly, who the hell was the polar bear supposed to be?) The next day, Tuesday, this ensued:

I met Martin at the school bus stop at 2:45 pm. He exited the bus and walked directly to me, without engaging other kids. That was usual. He also looked depressed. Really, really in the dumps. He stared at his feet as he walked. I asked, “Are you okay? Did something happen?” He replied, “Oh no, I’m fine,” and followed up with, “I had an excellent day at school. Let’s go home.” On the brief trip from the bus stop to the house, I asked a few more times whether he was upset. Martin continued to deny that anything had happened. I took him to taekwondo and to church Kids’ Klub. No mention of anything.

Adrian arrived home in time for dinner, so we three ate together. Adrian finished first, and then left the table to take a business call.

Martin asked, “Do you and Daddy think I’m weird?”

I replied, “I guess everyone is ‘weird,’ in some ways. We all do things in our own way, and that can seem weird to other people. What makes you ask?”

“Do you and Daddy think I’m stupid?”

“Good heavens, no! What makes you ask that question?”

Martin started to cry. He said, “The kids on the bus think I’m stupid.”

And then—whether because the psychologist unlocked a vault within Martin, or otherwise—stuff got real. Through his tears, Martin described his current social situation:

  • The kids in his class call him weird and unfriendly.
  • No one will play with him at recess.
    • Robert, whom Martin knows from church, was playing a game with friends. Martin asked Robert if he could join. Robert said no.
    • Kids run away when they see him coming.
    • A second-grader from another class seemed like he was going to accept Martin’s invitation to play, until one of Martin’s classmates ran over and said, “Don’t play with him! He’s the weird kid!”
  • Some weeks ago, when Martin got in trouble for telling a girl he was going to “kill” her (at the time, he provided no explanation why), it was because the girl had just said, “Martin, no one likes you.”
  • Even the young parishioners at church Kids’ Klub refuse to play with him.
  • As bad as all that is, the school bus is still worse. Every day the kids make fun of him, for months now. Even the kids he knows from bus stop participate in the bullying. The twins across the street participate. Kids from other classes and grades participate. The only kids who don’t tease him are kindergartner Marcus, third-grader Alice, and fifth-grader Stephanie. The only kid who ever will step in to stop the bullying is Stephanie.
  • This very afternoon, before Martin alit the bus looking so dejected, the kids had invented a chant: “Stu-pid! Stu-pid! Martin is so stu-pid!”

Never before had Martin said any of this directly. As realities were pouring out, Adrian realized from his office what was going on and returned to the kitchen. He found me squatting next to Martin’s chair, with my hand on his arm, withholding my own tears as I tried to reassure and let him continue. Martin held court for more than 15 minutes. Twice Adrian tried to hug Martin, but Martin resisted, pushing Adrian away gently because he wanted to keep talking. The conversation was extraordinary. Martin held eye contact, consistently. He spoke clearly. He answered my questions: No, his aide didn’t hear mean things kids said; no, the bus driver never intervened; no, Stephanie hadn’t been able to stop the stu-pid! chant because she wasn’t on the bus this afternoon. Martin also expressed a shocking degree of self-realization and profundity. “They say I’m unfriendly,” he said, “but it’s not true. It’s just that I’m still learning how to be friendly.” “I know those kids are wrong. They just don’t know me well enough.” “The twins were nice when I first met them, and then they turned mean on the bus.”

Finally, as I listened to what Martin has been enduring, I lost my own composure. At that moment Adrian scooped up Martin and carried him from the kitchen, telling him how brave he was to trust Mom and Dad with these stories and how proud we were. He took Martin to the bathroom and ran a warm bath. I remained in the kitchen, crying.

With Martin calmer and soaking in the tub, Adrian came back and hugged me.

I said, “We’ve got to do something.”

Knife

Posted on by findingmykid
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We knew when we put Martin in public school that socializing would be problem.

It has been.

Academics: Not a problem.

Speech/language: Fading as a problem, except for social/pragmatic usage.

Behavior: Sometimes a problem (the silly, detox-y days), but his teacher handles the behavior masterfully.

Socializing: Problem alert.

Last month, in the post titled, “I’m the Issue,” I wrote about my concerns for Martin’s self-esteem.

At night, when the reading is done and the teeth are brushed and Martin and his stuffed Minions are tucked under organic linens, I sit on his bed to tell him that he’s a great kid and very, very loved. If he’s having anxiety, I make him repeat: “I am safe. My mom is in the house. My dad is in the house. My mom and dad will keep me safe, and I will keep my Minions safe. I can sleep well tonight.” Sometimes we talk about the day he’s had, or the next day he will have.

“Is it okay,” he asked me two weeks ago, during this intimate time, “if people don’t like me?”

I said, “Of course it is. Everyone has some people who don’t like him or her. There are people who don’t like me. There are people who don’t like Daddy. You can’t make everyone like you.”

“But is it okay,” my beautiful eight-year-old son continued, “if no one likes me?”

I am a failure.

Boom! Booh-Yah!

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7

I got around to posting “Eureka!,” about Martin’s potential salicylate intolerance, only yesterday. I try to keep Finding My Kid as current as possible. Alas, in this case, I’m behind schedule; we’ve already been doing the low-salicylate diet for a week-and-a-half, since Tuesday afternoon, January 3.

Last week, the first week, Martin seemed better than when we were skiing. The difference was mostly ephemeral, so I wasn’t sure if I might be imagining a change, to fit my own salicylate narrative. He had fewer meltdowns, I thought. He seemed more connected. But he was still perseverating plenty, so I wasn’t sure. The weekend went well. My brother Eddie came for a visit, with the express purpose of taking Martin to the City to do whatever he wanted. The two of them were gone all day, Saturday. Eddie reported no problems.

Then came Monday, the seventh day of a low-salicylate diet for Martin. To my surprise, Martin came home from school with a special note from his teacher, which read, “Mrs. N— is so proud of my amazing day! Martin worked so hard and had a wonderful day!” The note was accompanied by a math test—all word problems—on which Martin had scored 100%, and because that night’s homework was “correct the math problems you missed,” Martin had no homework. Monday afternoon, Martin went to his taekwondo class and performed—not “well,” per se, but better than usual.

Tuesday, I accompanied Martin’s class on a field trip. Martin was clingy, from the unusual circumstance of having me near him during a school event. I wouldn’t say he had a fabulous day. He melted down during a presentation by a museum administrator, who summoned several children as volunteers but refused to call upon not the over-enthusiastic Martin.

Wednesday I received a text from Martin’s behaviorist, who was in the classroom: “Another great day again. More independence, better attention, quicker work completion, better staying on task, increase in social initiation.” Wednesday afternoon came another note in Martin’s backpack, from his teacher. This one, which was on his daily evaluation sheet (the Monday note was on a regular blank page) read: “Martin had an amazing day today! So proud of him J —Mrs. N—.” In the row for “Partner Work” was an additional note: “worked really well with his math partner!”fullsizerender-4

Thursday brought another victory. The note, on Martin’s daily evaluation sheet, read: “Super day today, again! Mrs. N— is so proud of Martin! J” In the row for “Partner Work” was written “Great partner work today,” with a smiley face formed from two exclamation points.fullsizerender-6

Thursday evening, after work, I spent an evening on the town with a group of fellow special-needs moms, and Adrian was in South America on business, so Martin’s babysitter Samara stayed with him. Samara was preparing dinner when Martin took snuck into the kitchen and stole an organic mango Samara had peeled and sliced for herself. Samara texted me immediately to say Martin had eaten the mango while she was distracted and she hoped it wouldn’t interfere with his new diet. After a flurry of iPhone research, I replied, “Good news! I just looked mango up, and it’s ‘moderate’ salicylate—so not good but not as bad as it could be.”

Apparently, however, it was enough. At 9:13 pm, Samara texted me, “He is still awake but in bed already. He’s laughing for no reason. Sí. I guess it was the mango.” Martin was still awake when I arrived home after 10:00 pm. I went to check on him and found him in the laundry bin in his bathroom. I asked, “What on earth are you doing?” He replied, “Well, I’m sitting here in this laundry bin.”

Given Thursday night’s post-mango escapades—as far as I can tell, Martin fell asleep around 10:40 pm, some three hours after bedtime—I feared that Friday might be rough. No indeed. This daily evaluation sheet came home:fullsizerender-5

Please, examine that sheet carefully. The daily evaluation sheet that Martin’s behaviorist devised rates him in various categories—“followed routine directions,” “raised hand and waited to be called on,” &c.—on a scale from 1 to 5. A 1 means “heavily prompted.” A 5 represents “excellent independence,” or as the behaviorist described it to me, a 5 means that Martin performed on an independence level similar to any other kid in his (mainstream) class. Friday’s evaluation sheet rated Martin a 5 in every category, both morning and afternoon. That means, on Friday, according to Martin’s teacher, Martin performed at a level similar to any other kid in his mainstream class. A level similar to every other kid. The evaluation was accompanied by yet another handwritten note: “Another amazing day today! ❤ So proud of you!!”

Let me add, if I may, that I do not usually receive handwritten notes from Martin’s teacher. Each of these was special, and unique.

Now, there are caveats. First, I have not been seeing the same kind of super-improvement at home, or in Martin’s after-school activities. His meltdowns have decreased, homework is going well, and he seems less irritable. But I would not affix an “amazing” label to his home behavior. Maybe he’s taking advantage of me. Second, Martin has been having trouble falling asleep. This week he was up until 9:40 pm, 10:30 pm, even near midnight once. As a result, he’s been tired and lacking some focus. So I can’t say everything is fabulous. In any event, at school the trajectory is upward. Dramatically upward, apparently.

Here’s a funny addendum. At least it’s funny to me, and probably to other biomed parents. Wednesday, Martin’s behaviorist, who knows we do biomed, texted me from his classroom, which she visits once per week. She wrote: “Another great day again. More independence, better attention, quicker work completion, better staying on task, increase in social initiation. Supplements kicking in? Only difference here is aide is out again.” With that last sentence, she meant Martin’s one-on-one aide, who was absent all week with flu.

I wrote back: “No—believe it or not, over Christmas break, I think I discovered that Martin is salicylate-intolerant. I’ve been cutting all salicylates from his diet—and now these results.”

The behaviorist responded: “I can’t keep up with all his allergies and intolerances anymore. What can this poor kid eat?”

I explained what salicylates are and assured her that Martin is still finding plenty to eat (more on that later). Then I expressed my enthusiasm for how much this new dietary tweak seemed to be helping.

The behaviorist, evidently skeptical, went in a different direction: “The other variable is the teacher and I are really trying to pull Martin’s aide back further. She goes through periods of hovering. And I think it stresses him out. The substitute aide isn’t being utilized very much. I think the more freedom relaxes him and that could be the factor as well.”

Aha! Martin’s school performance just bumped not because we discovered a salicylate intolerance and took action, but because he has a substitute aide. Cue the eye roll.

Week Four. Disaster?

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5

It was all going so well. Or pretty well. I mean, it was going.

Wednesday of Week Four came the harbinger that the adjustment to Martin’s new school may not be as smooth as appearances. I was working in my City office when, right about school-dismissal time, I received this email from Martin’s teacher:

Hi Mrs. [M—],

Martin had some trouble today during both “Read Aloud” time and Silent Reading.  As I was reading aloud to the children on the carpet, he made noises and distracted the other children.  I needed to stop several times to remind him how we show good listening.  The other children really enjoy “Read Aloud” time and become frustrated when we need to stop many times.  He also had trouble reading silently this afternoon during reading time and could not control his laughter and calling out. We moved his color clip to yellow today but he shouted how he doesn’t care and he’s not going to try tomorrow.  It seems that these two times are particularly troubling for him during the day.  When I do see the behaviorist this week I will ask her to help us with a plan for these two times.

I just wanted to touch base and let you know our concerns here today.

Thanks so much,

Mrs. [N—]

Oh no! Oh no! I have two greatest fears, this first month at Martin’s new school: (1) bullying/rejection, and (2) that he will be removed from general education. This email, while mostly directed at fear (2), also touched upon fear (1), namely, that Martin’s behavior was frustrating the other children. The situation came with the compounding factor that uncontrolled laughing and outbursts are often related to Martin’s biomedical treatment, as when we are “kicking up” too many bugs/toxins/parasites/whatever. “Sorry about that. Must’ve kicked up too many parasites again” is not the most practicable response to give a mainstream public-school teacher.

Immediately I responded, copying Adrian and Martin’s behaviorist:

Mrs. [N—],

Thanks so much for the update, and I can imagine that it must be frustrating if Martin was distracting the other children. Could you tell me—is this behavior new, or has it been ongoing? We have had (short-lived, I’m glad) times in the past when Martin had trouble controlling his laughter, so it would be helpful to know how long it’s been continuing this time. We will absolutely address this with Martin and also check in with Darlene [the behaviorist] about her opinion on how to handle.

I will let you know what Darlene and I discuss, and I’m sure you will have a chance to speak with her this week also. Please keep us posted.

Best,

Maria

Next, I texted Darlene:

Just got an email from Mrs. [N—] that Martin is disrupting reading time with laughter and outbursts. She wants help with behavior modification suggestions.

She responded within seconds, seemingly aware of the situation already:

Yes. Sorry, I was supposed to go there today. Still sitting at desk at home doing emails and plans. Aide reached out yesterday, said he was silly. Thought maybe tired.

We continued:

I’m contacting his doctor now about whether we can cut back on anything that might be causing the silliness, but I’m worried. I think we should get a plan in place ASAP. Can you get to [his school] tomorrow?

Yes.

At this point, Darlene telephoned me. She said that she thought Martin’s behavior—especially the part when he said he “doesn’t care” and won’t even try to achieve “green light” rating tomorrow—might be a reaction to some of his first rejection experiences. She relayed an event the previous week when the teacher had asked the class to pair up for an exercise. The pupils began turning to whoever was closest and forming groups of two. Martin missed the social cue and instead yelled, “Who wants to be my partner? Who’s going to be partner with me?” He ended up the only kid without a partner. Darlene also said Martin has been withdrawing more at recess, and that his aide has had increasing trouble getting him to engage. She did say that sometimes Martin sits with a couple kids who play with stuffed superhero toys, and that maybe he’d like to bring a similar toy to play along.

We hung up, but my mind was still on Martin, and definitely not on work. I wrote a message to Martin’s doctor, asking what we might antimicrobials we could consider relaxing, and what else I could do to support him and control the laughing fits.

Darlene and I started texting again:

Glad I wasn’t there when no one partnered up with him last week—that kind of stuff just kills me.

I know. It was a day when substitute was there.

Substitute teacher, or substitute aide?

Teacher. There was a sub teacher for a couple days last week. All these could be contributing.

Miss I [Martin’s aide] was his partner for a bit, then she switched and was a partner with someone else and Martin partnered with a student.

Eek. Need to find a better way to address these skills.

Writing to teacher and aide now.

Please let them know that Adrian and I take this seriously and will work with everyone to resolve ASAP.

I just heard from Samara. She said Martin told her immediately that he was laughing too much at school, and agreed that he lost his iPad privileges for today. She also said he said, “Maybe I can use it tomorrow,” which would suggest he was just frustrated when he said he’s not even going to try.

Exactly. I think it was just because he didn’t know what else to say. I sent email just asking if certain times of day or activities [are problematic]. How are peer relations. I did not copy you as I want them to give straightforward responses.

Yes, that’s good. I have already contacted the doctor. Since I am not at home tonight, I asked Samara not to be angry at him, but more to try to build his confidence about earning iPad tomorrow. I pass through Penn Station on my way home. I will check the shops for a superhero of the type you mentioned. I can also check Stop & Shop when I arrive home late.

This was certainly a diversion from arguing about Conjoint Analysis plus to determine consumer valuation of product attributes.

My attempts at humor are so lame. Darlene didn’t respond to that last text. Instead, she sent a picture of the stuffed superhero she’d mentioned, the kind two boys had on the playground:

fullsizerender-2

I kept going:

Thanks. I will take a look ASAP. And if you have words of reassurance, please feel free! Of course I am currently doubting whether we made the right choice for this year, but that may be just premature freaking out.

Absolutely just freaking out.

Okay. That’s me, I guess.

As horrible as it sounds it’s better for the kids to treat him as any other kid then to treat him as the class pet with special needs. Does that make sense? If they’re treating him like they see him as an equal.

        Maybe. If he’s ready.

Meaning he’s going to be going through some Growing Pains like just any other kid. My daughter comes home sometimes to say the same thing nobody playing with her. I just have to create something to help them through lunch and recess so he can get some friends.

Would you consider throwing like a fall party or something maybe even at your house as a get-to-know-everybody party. Unfortunately his birthday isn’t until June. Could you do a Halloween party? This way you could get to know some of the other moms and maybe start to have some play dates to foster some relationships just one-on-one.

Egads! Was she kidding? With my introverted nature and minimal confidence in my own social skills, I live in perpetual anxiety. What if I threw a party for Martin, and no one came?

Hmmm. Not a bad idea. But I do have a fear of no-shows! We have a play date this Friday with Lucas from his class. Fingers crossed. Also, I love the way your autocorrect capitalized “Growing Pains.”

Okay great.

That seemed like my cue to stop texting Darlene. So I did, for a few hours. At 8:30 pm, on my way home (Wednesdays I work late), I texted her a photo:

img_4400

Found this at Penn Station Kmart. Not exact but I hope close enough.

Perfect.

Hooray! I will send it to school with him tomorrow, with the instruction that he can take it out for recess. I detest the Penn Station Kmart. Only dedication to my child could make this happen.

You’re the best.

Martin is the best. Just want to help him understand that.

After Second Week, Open House

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2

After two weeks of school, we attended open house and visited Martin’s classroom.

Various parents knew each other already and formed their little collectives, to chit-chat about teachers and classroom behavior plans and extracurricular activities. Adrian was late (work), and I knew only one other mom, who herself was late, so effectively I knew no one. I nudged into a few groups, alternately smiled and looked concerned, then sat at Martin’s desk.

He shares a desk with a boy named Lucas, I discovered. I introduced myself to Lucas’s mother, a lovely Central American immigrant. Lucas, the told me, understands Spanish but prefers English (like Martin, these days) and talks about Martin. I suggested getting Lucas and Martin together for a play date. She agreed but warned me that Lucas has had speech and language delays, is socially immature, and has been held back a year in school. I assured her that Lucas’s immaturity would be no problem at all.

The teacher made a presentation about expectations and how she runs the classroom. (In the middle her talk, Adrian managed to show up). Then she invited the parents to explore the classroom. Adrian and I took advantage of the time to bombard the teacher with our questions. How is Martin adjusting? Is he finding other kids with whom he can eat lunch? Can he keep up?

The teacher told us that Martin had needed to do a lot of adjusting, in terms of independence. The first day he had expected someone else to unpack his backpack, and to accompany him to the bathroom, and to make sure his lunch ended up with the other lunches. He had stepped up and learned quickly. (I’ve been realizing that Martin’s old school coddled him too much.) Academically, the teacher said, Martin is “solid.” (I should hope so. He’s repeating second grade.) He is a pleasure to have in the classroom.

Are you sure? we asked. He’s not disruptive or giving you any trouble? He’s able to follow the instruction?

“He’s fine,” the teacher said.

Fine? What does that mean? Is there anything we can be doing to help? Because sometimes “fine” means everything is okay, and sometimes it means there’s trouble. If there’s any trouble, we’ll step in and—

At this point, the teacher’s expression migrated from solicitous to amused. “‘Fine’ means he’s doing fine. Really.” Then she added, “I think you two need to chill out.”

Yes, Martin’s second-grade teacher told me and Adrian that we need to chill out.

At which point we decided to back off and chill out. We wrote a note to leave in Martin’s desk. We mingled with parents. The other mom I knew had arrived by then, and she introduced me to a couple who are seeking a new psychiatrist for their daughter’s neurodevelopmental work-up. I recommended Dr. PS.

As we walked to the parking lot, I said to Adrian, “I think the only way that could have gone better would have been if she told us Martin had been elected class president.”

Martin atop the Empire State Building. Sky’s the limit.