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Three months ago, I reported that food is easy. Food became easy when I shifted from a “replicate what we used to eat” and “recipe” model to a minimalist model, like “(Brussels sprouts + oil + salt) + (lentils + paste[onion + ginger + garlic + turmeric+spices]) = meal.”

I’ve had another shift when it comes to ingredients. For years I’ve thought of cooking for Martin in terms of what I can’t use. I began with, “What would I like to make?” and proceeded to, “What are the ingredients I will have to substitute?” Example: “I’d like to make muffins,” followed by, “Grain flour. And right now, chicken eggs.”

We’re supposed to be avoiding eggs again.

Now, by contrast, I’m launching meals from a new spot. The ingredients come first. I begin with, “What foods will be healing and provide Martin with the particular nutrition he needs today?” and proceed to, “How can I combine those foods into a meal?” Example: Last night I checked the kitchen. Fresh food I had on hand that Martin could eat included peppers, onions, garlic, butternut squash, apples, romaine lettuce, cauliflower, celery, duck eggs, cashew cheese, bison chorizo, and bone broth. In the pantry I had a variety of nuts, along with rice crackers, LäraBars (Martin’s fave), and cookies I’d baked from almond flour, maple syrup, vanilla, baking powder, raisins, and almond chunks.

Today’s menu for Martin:

Breakfast: duck egg cups with peppers and onions; fresh juice made from romaine lettuce and apple.

School snack: Lära Bar.

School lunch: bison chorizo meatballs with added peppers; homemade cookies for dessert.

After-school snack: rice crackers with cashew cheese.

Dinner: cauliflower “fried rice” (no actual rice) with peanuts added for protein; bone broth. In the cauliflower rice recipe, I substituted celery and squash for peas and carrots (making do with what I had), and coconut aminos for soy sauce, since Martin can’t have soy.

So go the days, now. What do I have? What’s good for Martin? From those, what can I prepare?

Tomorrow’s breakfast forecast is nut butter between two almond-flour tortillas, fried in coconut oil and cut into six wedges. School lunch is shaping up to be vegetable lentils with quinoa. Salmon is defrosting for dinner, to be paired with cultured veggies. It’s a pretty good forecast.

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The cauliflower rice for dinner. Not too pretty, but Martin ate the whole bowl without pausing.

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This is not actually the breakfast I served that day, which I forgot to photograph. This is, however, pretty typical for breakfast: coconut-flour berry muffins with homemade veggie-fruit juice.

Mid-Air Without a Net

Posted on by findingmykid
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The past two months have been a struggle. I’ve alluded in the school-themed posts: disruptive silliness in class, lack of social enjoyment/awareness, moodiness. Most worrisome, Martin came off the school bus one day sad. I mean, he seemed really just sad. When I asked for details, he said he was “getting tired” of running at school and of riding the bus. He asked me to pick him up at school the next day. Out of concern for him, I rearranged my schedule and picked him up at school the next day, so he wouldn’t have to take the bus.

Steady, Up, Steady, Up, Steady, Down, Down, Down

The sequence of decline had unfolded this way: Martin has Lyme disease, most prominently, bartonella. Last spring, for Lyme, Martin was on MC-Bar 2™ and a Des-Bio Borrelia-Babesia kit, along with Microbojen™ ACV (subsequently substituted by Tangarana), gymnema, serrapeptase, Boluoke®, and Nose & Lung. He was tolerating that well. In June, after the Des-Bio Borrelia-Babesia kit was done, Dr. C and I decided to increase the Lyme-fighting measures. We stopped MC-Bar 2™ but added cumanda, houttuynia, DesBio Virus Plus, and Clovanol, along with additional supports like Magnolia Stress Aid and Lith-Oro™. The summer was tough, because Martin wasn’t sleeping well, and he exhibited defiance.

One benefit of keeping this blog, for me, is access to real-time impressions of Martin’s conduct. I checked my July and August posts to remember how he was doing.

In August, we ramped the anti-Lyme measures even more. Martin went on the comparatively powerful A-Bart™. Powerful. Not pharmaceutical. In the first weeks on A-Bart, we were in Costa Rica, and Martin flourished. Thereafter, his behavior started to slide. He started school a solid “decent,” whence he slipped to “distracted” and then “discombobulated.” His behavioral lapses looked like die-off-related ROOS. He had bathroom emergencies, i.e., sudden need to pee. I had to cut off his access to Disney Junior; he was so concerned with watching Mickey Mouse Clubhouse that he melted down if the channel guide listed an episode he hadn’t memorized, and he perseverated constantly on the show. (He’s eight. Mickey’s Damn Clubhouse is aimed at pre-schoolers.)

“Are you kidding me—is he on train lines again?” Adrian asked, when Martin, Mickey-less, switched to perseverating instead on New York City subway lines. “That’s like behavior we haven’t seen since kindergarten.”

Oh but you remember that behavior now, do you?

Sorting It Out

I scheduled a call with Dr. C.

Before the call, I held a sort of pre-game with my friend Stacey, another biomed parent. It looks like die-off, I told her, and I’ve got to find a way to right the ship. When Martin was in self-contained special education, I could weather these seasonal dips—two steps forward, one flop onto your backside, that’s the whipsaw of recovery—because his school specialized in addressing behaviors: Martin’s a little off his game. Deal with it. But now he’s in general education, in our local public school. They don’t want to deal with behavioral setbacks. They’ll kick him out. (I fear.) And then where will we be? We’ve already held him back in second grade to make the transition to general education. I can’t return him to second-grade special education, and he will have missed too much of this year to be in third grade.

“So what’s your plan?” Stacey asked.

I think I’m going to tell Dr. C that we need to come off all the bartonella remedies, I said, at least until our December visit to her office.

Stacey said: “Let me ask you this: What if you take him off everything, and he does better? What will you do, leave him off his remedies?”

I think he will do better off his bartonella remedies. That’s why I want to do it, to halt the die-off. I wouldn’t eliminate the remedies forever, though. Bartonella is still an issue, as the die-off shows. No more remedies might return him to “baseline,” but there probably wouldn’t be more progress.

That was my pre-game: to explore taking Martin off bartonella fighters, temporarily.

Dr. C agreed die-off was at issue, and took Martin off A-Bart and CXVRM3-Micro, increased his support remedies like enula, and added pau d’arco to help with stress.

Martin’s bathroom emergencies stopped overnight. His behavior, on the other hand, held steady for a few days then declined further still. He became anxious. “Mommy, are you angry?” he asked, constantly. That’s something I say to him occasionally, when he’s not grasping my cues: “I am angry,” as in, “Martin, bunny-hopping down the hall an hour after bedtime is not funny. I am angry.” Now my occasional anger morphed into a boogeyman lurking behind every interaction. “Martin, stop playing iPad and come to dinner.” “Are you angry? Mommy, are you angry at me?” “Get back in bed, Martin.” “Mommy, did you get angry? Are you still angry?” “How was school, Martin?” “Are you angry, Mommy?” Meanwhile, the perseveration rocketed to that level where Martin is physically unable to stop speaking. When we attended a weekend play date with his former classmates from self-contained special education, Martin didn’t look like the kid who’d transitioned to general education. He looked like the least engaged kid of the bunch.

I scheduled another call with Dr. C, on a Wednesday evening.

Nadir

That Wednesday, we hit a low point. Martin, who loves (but doesn’t always read) books, was excited for the book fair at school. Two days earlier, I’d helped set up the book fair and seen plenty that would catch Martin’s eye: colorful softcovers, cartoon-character pencils, big erasers, silly pointers. On Wednesday morning, I sent a signed, blank check and, to facilitate my own accounting, I scrawled “for books” on the check’s description line.

Apparently, whoever helped Martin at the book fair interpreted the “for books” descriptor to mean Martin could select only books—no pencils, erasers, bookmarks, pointers, gadgets, or toys. So while Martin’s classmates gleefully (I’m picturing this in my head) attacked the goodies, Martin was limited to books. According to the teacher’s later description, this circumstance sent Martin, who was already having a bad day, into a tailspin from which he was not able to recover.

The school has my mobile phone number. Would that someone had called me to ask whether Martin could buy only books. Argh.

Martin was with his nanny, Samara, after school that day, because Adrian was in South America and I had to work. I arrived home at 5:50 pm, to accommodate a 6:00 pm call with Dr. C. As soon as I entered the house, Martin began to cry. “Why did you say I could only buy books?” he asked, tears rolling. “Why wasn’t it okay for me to buy toys?” I needed a minute to surmise what had happened, and then realized it must have been what I wrote on the check. I brought Martin to the sofa, cuddled him on my lap, apologized, assured him I hadn’t meant to say he could buy only books, promised him a weekend trip to the toy store. I consoled him as best I could, then had to leave him, still sniffling, with Samara while I took the call with Dr. C.

That moment, Wednesday, 6:00 pm, was rock bottom.

“I can hear the frustration in your voice,” Dr. C said as I described the past two weeks: the perseveration, the constant questions about whether I was angry, the emotional instability.

I know we have ups and downs, I told her. I know that with progress come setbacks. But he’s in general education now. We have no safety net.

Dr. C was reassuring. Bartonella manifests in anxiety and compulsive behaviors. The A-Bart had been too strong a remedy, and Martin couldn’t handle the die-off. But plainly he needs something to keep the bartonella in check.

We agreed to add Active H2 and pantethine to help Martin’s current state, and to put him back on the MC-Bar II and Des-Bio bartonella kit that he’d tolerated well in the spring.

I felt better, like at least we knew what was going on.

After the call with Dr. C, Martin’s behaviorist came over. Darlene, the behaviorist, sees Martin at school and at home, and we had arranged this meeting the week before. I told her about Martin’s book-fair meltdown, about how poorly everything had been going, about the bartonella treatment, about my worries that he the school could seek his removal.

Like Dr. C, Darlene was reassuring. “You need to know,” she said, “that Martin is not the behavior problem in his classroom. There are kids with more behavior issues, and whose parents aren’t interested in doing anything about it.”

“Really?” I asked

“Yes.”

“What I need to hear is that the teacher and the aide like Martin—that they still want him in the class, and support him being there.”

“The teacher loves Martin. And the aide thanked me for recommending her to work with Martin.”

With that, I felt better still, like at least we weren’t on the verge of being kicked out of school. Darlene reviewed a new playground participation plan she’d been working on. She also recommended that I write a note to Martin’s teacher letting her know about the bartonella flare, and that we were taking action on that front.

Typically, I shy from discussing anything we do biomedically with a mainstream audience, lest we appear radical or weird. On this occasion, however, I felt that an explanation could buy some extra patience for Martin. As soon as Darlene left and Martin was asleep, I sat at the kitchen table and handwrote a two-page note to Martin’s teacher.

Reemergence, Nope

Meanwhile, I had to order the new remedies that Dr. C and I had agreed upon, and I hoped they would arrive on Friday. They didn’t. In an unfortunate coincidence, I had a concert to attend Friday night, and Saturday morning I left before dawn to retrieve a classmate from JFK airport and attend a luncheon at my law school. Adrian was still in South America, on family business, so Martin spent Thursday evening (when I work), Friday evening, and most of Saturday with Samara, whose text messages described abysmal behavior.

The taekwondo teacher wants to talk to you, she 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.)

Sunday, after church—“He told me all about the presidents, like wow! He knows all about the presidents,” the Sunday school teacher reported—I took Martin to the City for a play date. He wanted to spend the afternoon riding subway after subway. His playmate, who is also currently fixated on train lines, was more than happy to oblige, so we rode subways all afternoon. On the way home, Martin had a meltdown. I don’t even remember why. I just remember the meltdown.

Monday evening, the new finally remedies arrived. I started Martin on the Active H2 and pantethine immediately, and Wednesday morning I added MC-Bar II, beginning with only two drops and working up from there. Wednesday, something went right. Around lunchtime, I received this email from his teacher:

Just wanted to write a quick email to say that Martin is having the BEST DAY! He is working cooperatively with his classmates on a math enrichment, took initiative to organize who was going to bring out the recess equipment, followed a web quest on the computer without any help, and followed every other direction given today with little or no prompting! We are very proud of him and wanted to let you know.

Was it a miraculous transformation? I wish. Thursday and Friday Martin was foggy again, and our weekend included another trip to ride MTA subways to and fro, and another meltdown. In fact, several meltdowns.

Breathing Deeply

By now a month has passed since we implemented the changes (have you noticed I haven’t been posting much?), and I regret to report that the situation has improved only marginally. The week before Thanksgiving, we had a pre-scheduled meeting with Martin’s school team, to discuss how his transition to a general-education classroom has been going. The teacher reported that Martin is having meltdowns about three times a week, whereas in September he had none.

Nevertheless, no one suggested that Martin doesn’t belong in the general-education classroom. Those present, in addition to the classroom teacher, included the speech therapist, OT, PT, resource room teacher, and school psychologist. The table was quite full.

At home, our family is being held hostage by Martin’s obsession with NYC trains/landmarks combined with his emotional fragility. His is constantly demanding to see my calendar and know whether we have any trips to the City planned, and if so, he wants to dictate which trains we will take and where. He becomes agitated and upset if his wishes aren’t met. Over Thanksgiving break, I planned a trip for us and four visiting relatives to a Manhattan Bierhall, to appease Martin. The logistics involved Martin traveling by train with one of my brothers, while I drove with another brother’s suitcases, because he was returning home that day. Martin got to eat a treat meal with potatoes and sausages. His response to our efforts? He melted down because he wanted to “ride subways and do something else in the City.”

I’ve been bouncing Martin’s enula and MC-Bar II doses, experimenting to see whether one of those remedies could be causing adverse effects. No luck.

This week I spoke again with Dr. C. I feel like I’ve morphed from the confident patient into the needy parent. We are not sure whether bartonella is at fault, or whether another culprit could be at work, such as mold in his new school. (Recall that much of the spiral has occurred, and intensified, upon his beginning school.) Dr. C advised that I try zeolite and CBD oil to control the situation until Martin’s appointment next week in her California office.

Readers, this is a trying time.

Still, I do have a silver lining: Martin is sleeping well. Which means I am sleeping well. Which means I can handle almost anything.

Cancellations, Delay, Need

Posted on by findingmykid
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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.

Needlessly Suspicious

Posted on by findingmykid
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Another post along the lines of “Terrified.” Sunday morning at church, during children’s time when the kids gather around the chancel for a few minutes, the pastor asked if anyone knew who Martin Luther King Jr. is. One girl answered but confused Martin Luther King Jr. with Martin Luther. (Understandable. We’ve already started commemorations for the 500th anniversary of the Magisterial Reformation, and that was where the pastor was heading, eventually, with the discussion.)

Next, Martin raised his hand. Raised his hand! Good work! When the pastor called on him, Martin launched a soliloquy on MLK’s birthdate, major accomplishments, “I Have a Dream” speech, assassination date, and the holiday honoring him. Indeed, Martin held court at some length, monopolizing children’s time and oblivious to the pastor’s attempts to segue from MLK Jr. to Martin Luther, Reformation Leader.

The congregation seemed to love Martin’s facts. They always do. As Martin was carrying on, and then when we passed the peace, and again after church, adults complimented me on Martin’s MLK Jr. fact base. No one mentioned him usurping half of children’s time from the hapless pastor.

During coffee hour, one parishioner asked me where Martin is in school. I replied that he’s in second grade at our local elementary. She said, “His teacher must be really good.”

Now, reader, what would you think she meant?

I went right for the worst: She must be asking where we found a teacher who can handle Martin’s interrupting and talking past his turn, habits that clearly flummox our pastor.

I asked, “What do you mean?”

She replied, “He knew about Martin Luther King when none of the other kids did. She must really be teaching well!”

Oh. Of course.

The following morning, Monday, Halloween, I brought Martin to the bus stop in his costume. (He was an astronaut.) After the kids got on the bus, as the parents were saying goodbye, one remarked, “See you at the parade!”

The parade? What parade? “The Halloween costume parade at school. You have to go—all the kids look for their parents, and Martin will be upset if he doesn’t see you.”

I had no idea.

“Didn’t you receive an email from your class parent?”

No. Come to think about it, I haven’t received any emails from our class parent all year, despite adding my name and email address to the class list at open house. No wonder I’ve been in the dark about different events, and occasionally blaming Martin for not telling me in advance.

Now, reader, why would you think I haven’t received any emails from the class parent?

I went right for the worst: The class parent knows that the high-need child is mine, thinks he usurps attention from other pupils, and is subtly excluding us from activities.

After the Halloween parade, it turns out, there was a classroom event with parent volunteers. Even though I wasn’t on any volunteer list (because, well, I had no idea . . .), I weaseled my way into the classroom event, where I spoke with the class parent. “Tell me your name again?” she asked. “Oh, yes! Yes, my emails to you keep bouncing back.” She pulled out her mobile phone and asked me to double-check my email address in her contact list.

My email address in her contact list had a typo. Although the error was obvious—@yahoo.com was written @yhaoo.com—it seemed unintentional error, not aimed at excluding the special-needs family. Still, I needed a little more confirmation.

As if on cue, the class parent around and asked, “So, which child is yours?”

Terrified

Posted on by findingmykid
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Martin is doing taekwondo now. He’s breaking my heart. He’s supposed to be playing ice hockey. We’ve invested more than a year in skating lessons and hundreds of dollars in hockey equipment. It’s no secret that I reproduced primarily to give the world another hockey player. Hockey, hockey, hockey.

Alas, apparently Martin has a will of his own. Weeks ago, we had a (parent-and-school-administrator-arranged) play date with Spencer, one of the cooler kids in Martin’s new class. Spencer is close to earning his taekwondo black belt. He showed me and Martin some of his moves, and a video of him breaking boards with kicks and punches. Spencer’s family also invited Martin to Spencer’s taekwondo-themed birthday party at the local dojang. You can guess what happened next: Martin announced that he no longer wanted hockey lessons. He wanted taekwondo.

The dojang’s introductory package comes with two private, one-on-one lessons, followed by two group classes to decide whether you want to sign up for good. Martin’s first lesson, with a teenaged black belt named Brian, was kind of a disaster; Martin preferred checking himself out in the mirror to following any actual instruction. (Just like two years ago when we tried karate.) The second lesson, also with Brian, went much better; Martin was more focused and worked with Brian on the kicks and punches. (One of the dojang masters remembered Martin from the birthday party and made a point to say hi and encourage him. I think that motivated Martin.)

So it was time to try Martin’s first group class. As the class was 11:00 a.m. on a Saturday, Adrian brought him, and I received this hearsay account:

The class had one master (the one who’d said hi to Martin) and three assistant instructors, probably teenage black belts like Brian. At first, Adrian thought an assistant was specially assigned to Martin. Subsequently he realized that the assistant instructors were for the whole class but, unsurprisingly, spending more time with Martin. As Adrian observed, he texted me that he thought taekwondo could be very good for Martin.

Twenty minutes into the class, the other dojang master asked if he could have a word with Adrian, in the office.

“I was terrified,” Adrian told me, later. “I thought for sure he was going to say, ‘No more,’ or, ‘Just not the right fit for Martin’.”

“And? What did he say?” I asked, not terrified, but not terrified only because Adrian was speaking calmly, indicating no reason to be terrified.

“He said he thought Martin is going to do well there. He said they have a lot of kids like Martin—he didn’t mention ADD or anything like that, but we both knew what he was talking about—and that martial arts help a lot with focus. He contrasted it with sports where kids can get away with just running around, like soccer.”

Or hockey, I thought, before shunning the thought.

Adrian continued, “The master guy said that his ‘day job’ is as a special-education teacher at [S—] School.” That’s one of the local elementary schools.

“This sounds wonderful,” I said.

“I think so.”

“I would have been terrified, too.”

“I know.”

Having a kid with autism, or ADD, or ADHD, or (I imagine) any range of challenges entails constant fear of rejection (and sometimes, rejection realized). Last Friday, I had arranged an evening play date with a boy in Martin’s new class (Lucas, whose mother I’d talked with at the open house). We planned to meet at a playground. Friday morning the boy’s mother texted me that it was supposed to rain and so we should reschedule. She didn’t suggest any particular time to reschedule. Instantly, I was terrified. Had the classmate found out his play date was with Martin and declared himself unwilling to attend? Did he not want to hang out with the weird kid? I texted back and suggested Tuesday afternoon instead. The mom responded sure, and that she would be in touch Tuesday morning.

I wondered whether she really would contact me Tuesday morning.

I hope she would.

I feared she wouldn’t.

She did. Tuesday morning, she texted asking what time we wanted to meet.

The play date was kind of a bust. The other boy (himself kind of immature, with some challenges, though not at Martin’s level) played mostly with a pre-schooler who happened to be at the playground. Martin wanted to swing, as he always does. The other mother and I made scattered attempts to facilitate interaction, fruitlessly.

Still, later she texted me, “Let’s do it again soon!”

Disaster averted. Nevertheless, we’ve suffered enough rejections and setbacks along the way to keep the terror real, and present.

Week Four. Disaster?

Posted on by findingmykid
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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:

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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:

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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.

Adele

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Last year, Martin was into Adele. Adrian managed to snag three tickets to one of Adele’s September shows at Madison Square Garden. That’s the good news. As for the bad news—the show was on a Sunday night, in Manhattan, in September, when Martin was adjusting to a new school.

The concert was magical. We went by train, had a tapas meal, arrived at the Garden in time to explore before the show. Martin had been anxious about whether the music would be too loud, so I had a packet of ear plugs in my purse. We need not have worried. From the moment the lights dimmed and Adele rose upon a platform stage, singing “Hello,” Martin was transfixed. He never covered his ears. He wasn’t bored or asking to leave. He was so into the show that he tried to convince me he didn’t need to go to the bathroom, even as he was plainly kicking his feet and shuffling because he had to pee.

I forced him to go to the bathroom with Adrian. Apparently, before Adrian was done using the bathroom, Martin announced his intent to return to our seats—and Adrian let him go. My husband set Martin loose alone in Madison Square Garden and expected him to find his way back to our seats. Martin, miraculously, managed to do so, or at least to find the correct door, where he was stopped by a security guard who told him to wait for his father. If only my husband could have the judgment of a concert security guard.

It was after midnight by the time we got Martin home and in bed. While Adrian and I agreed the concert had been a resounding success, the excitement and abbreviated Sunday sleep time (like, four or five hours less than usual!) did not do his week well: Tomorrow’s blog post, which I’ve already written, is titled, “Week Four. Disaster?”

I’ll close with a few tidbits.

First, I’d hoped to hide, from Martin’s teacher and aide, why he was so tired. I mean—what kind of parents drag their special-needs eight-year-old to the City for a concert on a school night? Back in the old days, I could have hidden the deed. No more. Monday afternoon Martin’s aide left a note in his backpack, saying everyone enjoyed hearing all about the Adele show from Martin.

Second, if you’re in the mood to read, jump back to the post titled “Madison Square [Explicative] Garden” and remember the last time I tried taking Martin to a loud, noisy event in the World’s Most Famous Arena.

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Week Three, First Bullying?

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Week three of school. Martin and I were walking to the bus stop when he asked, “Why do some kids say, ‘You can’t sit here!’?”

“Do some kids say that to you?”

“Yes. Then the bus driver says, ‘You can sit in the first two seats’.”

“Which kids say that to you?”

“Big kids in the bus.”

“Does any of the kids from this bus stop say that to you?”

“No.”

“Do the big kids say that to other kids from this bus stop, or just to you?”

“I don’t know.”

“Do you think that is something kind to say, or unkind?”

“Unkind. Then I have to find a seat with one kid or no kids.”

“If someone says, ‘You can’t sit here!’, maybe you can say, ‘I’d rather find a better seat anyway’?”

“Okay.”

The conversation freaked me out. As soon as Martin boarded the bus, I texted his behaviorist, who sees him both at home and in school. With her approval, I also emailed the school principal.

The principal responded quickly: “I will look further into this situation today.  Is it possible that Martin is going to the back of the bus to sit? The long-standing tradition at our school is that the fifth graders sit in the back of the bus. The fifth graders will sometimes get overly sensitive about their ‘earned right’ to have the back of the bus.  I’m hoping that this is just a misunderstanding and an easy fix.  I will be very disappointed if there is more to it than that. I will be in touch.”

Later the same day, the principal sent a follow-up message, saying she had spoken with the bus driver, who would ensure that a seat behind him was always open for Martin, just in case.

I explained to Martin that fifth-graders sit in the back. He asked, “Then why do the twins get to sit in the back?” He meant our neighbors, who are in first grade. I had no answer.

The next morning, I consulted a fifth-grader I know, who also boards at our bus stop. She confirmed that fifth-graders sit in the back.

First bullying incident—might have been nothing, might have been something.

Subsequent bullying incidents—I’m worried. I’m always worried.

After Second Week, Open House

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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.

Second Week, Itchy

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In the weekend between Martin’s first and second full weeks of school, he and I traveled Upstate, to attend his cousin Mandy’s birthday party. The party took place at Mandy’s grandmother’s house, a country-kid-paradise with a creek for swimming, endless supply of water balloons, tractor rides, even some sort of gigantic inflatable ball for children to enter and be rolled around the lawn.

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Martin did okaaaay, considering that Mandy, the only child he knew, had twenty other friends to entertain, the surroundings were unfamiliar, and the event was unstructured (which is toughest for Martin). He managed spattered bursts of interactive play but also spent time alone, by the creek or on the rope swing. He wasn’t always where the other kids were.

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That evening, Saturday, brought some excitement. Martin and I were having dinner with one of my high-school friends when my sister, Mandy’s mother, texted to say she and her fiancé were driving my father to the hospital. My father was hospitalized last year for a blood infection in his leg. Saturday afternoon he visited a walk-in clinic because his ankle and calf were inflamed, and the clinic doctor recommended an immediate trip to the emergency room. Martin and I finished dinner, hurriedly said goodbye, and drove an hour to meet everyone at the hospital. (Upstate, every distance is wide.)

At the hospital, lolling in a chair at my father’s bedside (it was late), Martin started to complain that he was itchy, and bumps appeared on his arms. I asked the nurse whether the hospital used any products that might cause Martin to have an allergy. Why, sure, she replied, and enumerated chemical cleaners sprayed about the facility, including on the chairs. Martin continued to itch.

As soon as my father’s situation was under control, I drove Martin to our hotel and helped him scrub himself from top to bottom in the shower. He seemed to feel better. By then it was after 11:00 pm. Martin went directly from shower to bed and soon slept.

The next morning Martin woke without hives and decided to watch television while I showered. From the shower, I heard Martin yell, “It hurts! It’s itchy!” Hurriedly I wrapped myself in a towel and went to find Martin’s arms and legs looking like this—

I had no idea what was wrong but knew I had to do something. I drove him to a local drugstore and purchased the least offensive antihistamine I could find, in terms of additives and colors. By the time we left the drugstore, however, Martin’s arms and legs had returned to normal and he’d stopped complaining. So, no antihistamine. Instead, we went up to my sister’s for breakfast and then started the four-to-five-hour drive home. Everything was fine until twenty minutes from our house, whereupon Martin started to itch again. As soon as we arrived, I administered the antihistamine, and Martin quickly felt better.

The next morning, Monday, Martin woke up fine. Adrian’s car was getting fixed, so I left Martin with my mother-in-law (visiting) and drove Adrian to the train station. When I returned after twenty minutes, Martin was rolling on the rug, screaming. Actually screaming. “It hurts! It hurts! Help!” This time his legs looked like this—

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Martin swallowed more antihistamine, then said it was “hard to breathe,” to which I replied, “Get in the car. We’re going to the hospital,” because I wasn’t going to mess around if Martin was having an anaphylactic reaction. We were barely underway to the hospital, my mother-in-law in tow, when the reaction subsided. Martin was safe, so I diverted toward Martin’s pediatrician, calling underway for an appointment.

“That’s poison ivy,” the physician assistant said, when I showed her the pictures. “He’s covered with poison ivy.” She prescribed steroids and said we could continue with antihistamines. She also examined Martin’s throat and found no evidence of swelling, meaning that his “hard to breathe” comment was probably just frustration and panic. I called Martin’s MAPS doctor, got her okay for the steroids, picked up the prescription, and delivered Martin to school, with a lengthy explanation and bottle of antihistamines for the school nurse.

The poison ivy flared on and off all week long, Martin’s second week in his new school. He was miserable and, as far as I could tell, worn out.

He survived.

And if you’re worried—my father also survived.