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.”

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.

I’m Ignoring Politics by Writing a Wistful Post Instead

Last weekend we went skiing at Jiminy Peak with Martin’s friend Bobby, his neurotypical brother Adam, and their parents. Martin and Bobby took their ski lessons with Stride Adaptive Sports, a terrific organization similar to the National Ability Center, our Utah mainstay.

Monday morning (no school, for Dr. Martin Luther King, Jr. Day), I retrieved Martin after his lesson and chatted with the instructor.

“Your son is an absolute pleasure to work with,” the instructor said. “He’s so talkative. He could be a New York City tour guide!”

That cuts both ways. Martin is obsessed with trains and landmarks, and the location of both. “Mommy, the Chrysler Building is north of the Empire State Building. The Empire State Building is on the same road as the entrance to the Queens-Midtown tunnel. The bottom of Central Park is where Midtown becomes Uptown.”

I said, “Thank you. We’ve worked really hard on his speech and language.”

“Saturday, I had two lessons with boys who were basically non-verbal.” The instructor shook his head. “I just couldn’t break through to them.”

It’s hard to convey the tone the instructor used when he said he “couldn’t break though to them.” He wasn’t speaking scornfully, or with pity, or even with sadness. It was more like he was disappointed in himself, and wished the situation had been otherwise.

I started to say, “I understand.”

But I stopped myself.

Because I can’t understand. Not any of this mess.

Alternative Medicine

In the post “Mid-Air Without a Net,” I wrote:

The taekwondo teacher wants to talk to you, [Samara] texted Saturday morning. He’s wondering if Martin is taking any drugs for his ADD.

 Oh no! I texted back. (More on that in a later post.)

It’s “later post” time.

When I received that text from Samara, I panicked. Mostly because I was in the middle of panicking about everything else, but still. I thought the Master Rob might tell us not to return Martin to class until we drugged him. I followed up the text and spoke with Samara, and the situation got worse (at least, in my head): When Master Rob asked her if Martin is taking any drugs for his ADD, Samara had responded that we do “alternative medicine.”

That’s a phrase I never use. To begin, I don’t consider treating Martin’s underlying health issues to be “alternative medicine.” We have chosen against trying to manipulate neuro-processing with drugs. We are pursuing non-pharmaceutical options. We are working with new discoveries in treating immune dysfunction. We have been lucky enough to find cutting-edge therapies. We are targeting overall health. We are following the path that, for our son, has garnered the best results. But alternative medicine—no.

At its most benign, I think, “alternative medicine” suggests that we’re a hippie-dippy family trying to cure a spectrum disorder with yoga. (No disrespect to yoga. Yoga is great for mindfulness. It does not, however, do much for the gut biome or neuro-receptors.) “Alternative medicine,” to some, suggests that we are treating our child as a laboratory experiment, or harming him, or failing to accept “proven” treatments that could benefit him. At its worst, I (like other biomed parents) fear that proclaiming “alternative medicine” could invite intervention by well-meaning individuals who think they know better for my son.

I met with Master Rob the next week. I explained that we aren’t pursuing pharmaceutical options at this time because we are trying to heal some gut and other health issues that affect Martin’s attention, and that using drugs would interfere with gaging our progress. I went on to say that we aren’t categorically against drugs but that we want to take this path as far as we can first. Master Rob said that he understood, and that he had resisted pharmaceuticals for his own son, who has ADD, until sixth grade, when he thought the transition to middle school had made them necessary. He said also that he was curious about Martin’s regimen in order to give him as much help and support at taekwondo as possible.

Good enough for me.

Cancellations, Delay, Need

Last Saturday, Adrian and I had plans with another couple, close friends, a minister and lay person. They have a teenage son, Jacob, whom they adopted years ago, after the boy had suffered neglect and horrible abuse in foster care. Predictably, their son has lasting behavioral and emotional challenges, which our friends have weathered with grace. The day before we were set to go out, I received an email from the minister half of this couple, offering regrets that he needed to stay home because their son was bolting again: running away when he sees the chance.

I wrote him this note, which seems appropriate to share here, with permission:

Friday, when I saw an email from you arrive, I knew before reading what it would say. I’ve written the same email so many times these past six years—“I was really looking forward to our lunch, but Martin’s having a tough day . . . ,” “I can still make dinner, but I have to miss the movie. So much anxiety, he won’t go to sleep unless I’m home . . . .” Your cancellation, not unexpected, got me reflecting on our children, and what they’ve meant to our paths and relationships.

I never expected parenting to be the burden that it has become. Burden, yes. I mean the word without the negative connotation, or at least without only the negative connotation. Burden the way completing an education is a burden, or getting up to go to work is a burden. We carry these burdens in order to build a life. Some are heavier than others. Upon Martin’s diagnosis, parenting became heavy. Too heavy, sometimes.

People tell me that God makes special children for special parents, or that one day I will understand why Adrian and I were “blessed” with a child with autism. No way. I will never believe that a loving God afflicts children in order to test or to uphold their parents. Instead, I think our kids suffer the sins of this world. In Martin’s case, we have corrupted the food supply, toyed with earth’s natural abundance, believed we can overcome sloth with science, and set aside worldly order until we triggered sick kids, lots of them. Jacob’s tormentors—addiction, abandonment, abuse, neglect—are less modern but no less man-made. Autism and PTSD didn’t “just happen”; in both cases, our sons are left to absorb the sins of others.

—Which of course means that we as their protectors and caregivers are left to clean others’ messes. We chose parenting. We did not choose this parenting. But that, I suppose, is the nature of sin: Once we engage (as we must) with the world around us, there lurks evil. The Christian’s job is to fight back, and for whatever reason, you and I have Jacob and Martin as both the incentive for and the locus of our struggle. I wish it weren’t that way. I hate autism. I wish sin would have left my son out of it. Alas. For now, I try to be grateful for the weapons I’ve been given for the battle.

I’m not saying much with this note, and certainly not preaching to the preacher. I just wanted to share these thoughts, and through them to share my unceasing appreciation for your friendship and example.