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?

Polar Bear Under Siege

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.”

Exceedingly Difficult

I’m typing with my left hand. With only my left hand. It’s slow-going. I am right-handed, dominantly, not ambidextrously one bit.

My hair looks awful today. I managed to wash and condition (in a 20-minute shower, wasting water), but drying with one hand was hopeless. Hold the hair dryer, blow, drop the dryer, brush, retrieve the dryer, blow.

I can barely prepare food, because I can’t hold a knife to chop. Adrian had to buy his lunch yesterday and today, other than his lentils. Instead of mincing vegetables into meatballs, I made Martin’s lunches from buffalo chorizo, which contains high-sal ingredients. Martin had an anxiety-ridden day. I blame myself.

You guessed it: I broke my right wrist. I was playing tag on ice skates with Martin. Despite his protests and refusal to play hockey, Martin is still a better skater than I am, and with a lower center of gravity, and he was wearing hockey skates, while I had ancient rented figure skates. In retrospect, challenging him to a game of tag was—well, you can choose the right word.

I have to wear a bulky cast for six weeks, and the orthopedic surgeon is banning contact sports and weights for three months. B’bye, spring softball season. My personal trainer is designing some “cardio and legs” program to replace my lifting routine. I’m glad ski season is winding down.

I will try to keep blogging. But I’m still not sure even how I will feed Martin, so I can’t make promises.

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This is my arm! Why is the cast orange? Well, I do love Syracuse University.

Back Off, Maddow

Most weeknights, if I’m in the kitchen (and most weeknights, I am), I watch The Rachel Maddow Show, unless the New York Rangers are playing, whereupon I toggle between hockey and opinion. Watching TRMS, a liberal-leaning program, doesn’t signal my politics; I don’t always agree with Maddow on the issues. Instead, I find her a stickler for facts who bestows a clever touch even on obscure political events. And in any event, my politics don’t belong on FindingMyKid, which is “a parent’s real-time blog of autism recovery,” not “a parent’s thoughts on politics.”

Last month, Maddow did a segment on Betsy DeVos, the then-nominee for secretary of education. I don’t consider it political to say that I think DeVos was a deplorable choice; as a lawyer and special-needs parent, I believe the secretary of education must know the law, especially the law concerning special education. DeVos’s inability to articulate the meaning and enforcement requirements of the IDEA should have disqualified her. Instead of leading the segment by discussing DeVos directly, Maddow led by making fun of Neurocore, a Michigan-based biofeedback company. DeVos is an investor in Neurocore, and Maddow is not the first to report that DeVos does not plan to divest her interest in the company. Unlike other pundits, however, Maddow ranted hardest against Neurocore itself: its religiously rooted beginnings, its cost, and its methods, which she called “having children watch a movie and then interrupting them,” or something similar (I don’t have a transcript).

“I’m sure there are people who swear by this method,” Maddow said—as if she were speaking directly to the blogger behind FindingMyKid, who was thinking, “Hey, Rachel, don’t knock it till you’ve tried it.”

When it comes to reports on vaccines and the CDC’s vaccination schedules, I am used to listening/reading with a grain of salt. Actually, I just pour buckets of salt on the whole story. Mornings, I listen to NPR, whose coverage of vaccine issues I have found (perhaps) especially awful. Recently I’ve been hearing that Morning Edition is “brought to me by America’s Biopharmeceutical Companies.” Natch? But when it comes to other topics outside the mainstream—i.e., not vaccines—I still challenge myself. You might have read in a comment to the post “Opposite Direction” that we are trying the ionic footbath for Martin. (Follow-up post coming.) Before I commenced that new treatment, I re-read the criticisms and praise of ionic footbaths, and re-watched the videos purporting to debunk their efficacy, and spoke with Martin’s MAPS physician, and asked myself those two familiar questions: Is there any chance this will help Martin? Is there any chance this will hurt Martin? Ionic footbaths aren’t hurting him. As I will write soon, I’m not sure they’re helping, either. They certainly aren’t the panacea articulated by the commentator on the “Opposite Direction” post.

Neurofeedback, like ionic footbaths, is outside the mainstream. I do neurofeedback with Martin, not Neurocore, but Braincore. It’s expensive ($3,000 for 30 sessions, initially) and cumbersome (thrice-weekly visits to a center). Martin loves going, because he gets to watch and re-watch his favorite movies, like Hotel Transylvania 2, Despicable Me, and Zootopia. I, on the other hand, wish Martin were not re-watching movies. Is all this worthwhile, or as Rachel Maddow implied, just ridiculous?

The premise behind neurofeedback is that the brain can be monitored via its electrical activity (electroencephalogram, or eeg) and trained to work more efficiently. Martin wears electrodes on his head, which measure his brainwave frequencies by computer. While wearing the electrodes, Martin watches a movie, with the sound played through earphones. When the computer reads less regulated brain function, the movie dims and volume fades. When the brain function better regulates, the movie brightens and volume gets louder. Martin thereby trains his brain to work more efficiently—for his own enjoyment, or so it seems to him.

Seems promising. Indeed, in October 2012 the American Academy of Pediatrics rated neurofeedback a level-1 evidence-based intervention for attention and hyperactivity. (It can also be used to treat traumatic brain injury or and a variety of other conditions, such as PTSD.) But that doesn’t mean the treatment is free from criticism, Maddow-generated or otherwise. Most criticism seems to focus on a lack of comprehensive evaluation. As with so much that a biomed family does, sometimes what’s going on in the lab doesn’t keep up with what’s happening in the field, so here we land, again: Might the treatment help? Is there any possibility it will hurt Martin? Neurofeedback clears that standard, easily.

We’ve been doing neurofeedback for several months now. The next logical step is to check the pudding: Any proof in there?

The answer is—

I dunno.

Sorry if that’s another letdown. Martin is up and down, as usual. More up than down. Something must be causing the ups. Maybe the ionic footbaths. Maybe all the skiing. Maybe his supplements and antimicrobials, along with a small amount of (oral EDTA) chelation, are doing their job and helping his body shed immune impediments.

Or it could as well be the neurofeedback.

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Knife

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.

Feeding Them Both

Forgive me another post on food. I don’t usually hit food twice in a row—I’ll make this one quick.

Many are the challenges to feeding a three-member family when the child is mostly Paleo/low-sal/meaty, the mother is vegan, and the father is primarily pescatarian and prefers salads.

The vegan, who prepares the food, comes last. I’ll pretty much forage the (vegan) scraps of what the other two eat, so let’s take me out of the equation.

Sometimes I can feed Martin and Adrian the same meal, as with the “anything” pasta. Other times, I make a main course for Martin and repurpose it into a salad dish for Adrian. I’ve got quite adept at this repurposing. Add sliced avocado, maybe some fruit and nuts, and voila!, fancy salad.

Yesterday I made the promised white-bean skordalia. (Remember? The cannellini beans I forgot to soak?) For Martin, I scooped a heap of skordalia onto a plate and inserted two dozen raw carrot sticks, which poked out in all directions. I called this creation (which I forgot to photograph) a “moon flower.” Martin removed and ate the carrot sticks, then finished the skordalia with a spoon.

For Adrian, I made the skordalia the major protein in a salad, with pine nuts for flair. I added mixed greens with his favorite dressing—olive oil mixed with chickpea miso—and macadamia nuts and diced cucumber on top. I had fresh strawberries, so I finished dressing the plate with fresh strawberries.

Happy kid. Happy husband.

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