He Belongs

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

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

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

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

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

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

I wish this year wouldn’t end for him.

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

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

You guys should be very proud of your little boy.

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

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

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

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

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

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

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

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

Just kidding.

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

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

Take Heart. There Is Also More Than I Can Manage

It’s been seven years since we began biomedical interventions aimed at recovering Martin from autism, and though I always wish wellness would hurry up and get here, overall I am pleased with our success. Last semester we had a CSE meeting with our school district and, at our request, reduced the special-education services Martin receives. With newfound social awareness, Martin has grown resistant to being pulled so often from his mainstream classroom. We decided that we can still meet his needs even without physical therapy (taekwondo helps) or resource room (we’ve hired a reading tutor instead), and we’re cutting speech therapy from three sessions per week to two. Outside of school, Martin recently had a successful play date with typically developing twins, albeit 17 months younger than he is. Progress, progress.

How have we reached this point? Through utter, over-the-top lunacy. By my leaving my law-firm job to work on Martin’s recovery. By moving out of New York City, and into a house adjusted to meet his needs, from electromagnetic-shielding to environmentally sensitive paint. Through a variety of specialty and highly restricted diets, all home-prepared and as organic as possible. With homeopathy and, early on, homotoxicology. Through large medical bills (on top of pushing the limits of our insurance) for a team of MAPS(-ish) practitioners, an LLMD, geneticists, traditional and nontraditional allergists, developmental optometrist, neurofeedback practitioner, HBOT therapist. By insulating Martin from the commonplace, like fluoride, chlorine, harsh cleaning agents. On the non-biomed side, through special-education settings, hippotherapy, social-skills playgroups, a psychologist. And of course, by summer relocation to Nicaragua.

From the beginning, I have had to acknowledge the privilege inherent in what I can do for Martin. We are a two-parent family with one child. Adrian’s income as a law-firm partner made it possible for me to stop working and focus on Martin, and for us nevertheless to cover the expense of biomed. We live in an area rich with resources. Adrian himself believes in the biomedical approach. While he may select restaurants without enough regard for Martin’s restrictions, or plan trips that make it difficult to adhere to our supplementation routine &c., he never questions my research or seeks to undermine.

What we do for Martin appears extreme, to a good many folks, and that’s okay. It is extreme. I’ve always said I would do anything necessary for Martin’s recovery.

Yet, more and more often, I encounter parents who do more than I do.

Example: Parents who homeschool. That’s not happening for us. I love Martin and cherish our time together, enough so that—other than cooking—I get nothing done when we’re together. I need the six-hour break when he’s in school. I need the time to work, to shop, to research, to order supplements, to breathe.

Example: Parents who truly master the science behind medical challenges and recovery. When my family makes a big decision like medical marijuana, I try to do a lot of research. I read summaries and abstracts and, where necessary, delve into scholarly articles—which is tough. I’m no good at the science component. I’m forever amazed by parents who seem able to answer extremely complicated questions of physiology or neurology at the drop of a hat. Perhaps they were doctors in their pre-autism lives. Or perhaps they just managed to complete something more impressive than “Chemistry for Non-Science Majors,” which was the class through which I fulfilled my core science requirement in college.

Caveat: One could argue that anything biomedical we do with Martin is a “big decision,” because anything has the potential to affect his health short- or long-term. True. On the other hand, my anxiety is satisfied with comparatively less investigation when it comes to, say, Vitamin C supplementation than when it comes to, say, chelation.

Caveat: There are also plenty of parents in my on-line groups who, even to my weak eye, get science and even basic facts wrong. I wasted time one evening explaining why the statement “All soy contains GMO estrogen” was untrue (in varying ways). Another occasion, I spent hours trying to track down the source of a statistic about MTHFR mutation and autism that was being thrown around as gospel. I failed, even after looking through all eight articles in the medical journal to which the statistic was vaguely attributed.

The core point is this: In the event anyone feels disheartened because s/he can’t manage what we do for Martin, know that I too become disheartened by what others manage that I cannot.

Martin needs more detox support. For detox support, he takes a few herbal remedies, does a detox bath (two cups Epsom salt, half a cup baking soda, and essential oils) several times per week, and when we have time, sweats in our infrared sauna. But he needs more. I can tell because he becomes silly and inattentive (behavior I associate with detoxing) at certain times each day, usually when his antimicrobials are taking effect. So I went searching for a supplemental detox protocol and found a post, from the excellent blog Regarding Caroline, titled, “DETOX the Die-off and feel amazing again! [our roadmap to success].”

Call up the post, if you have a minute. Read through, past the various strategies of castor oil packs, dry brushing, &c., down to that part subtitled Our Daily Detox Routine. It’s amazing! Herx water and lymph drainage massage before breakfast, cytokine and lymphatic supplements mid-morning and early afternoon, foot bath during dinner, dry brushing before shower, more lymph drainage massage in bed, so on, so forth. Martin would undoubtedly benefit from that type of detox routine. So much detox might eliminate silliness altogether, which would help so much with social skills; just this afternoon, Martin said to me, “I know I shouldn’t laugh at jokes from inside my head when I’m with friends. I can’t calm my body and control the laughing!”

So Martin needs a routine like that.

But—

But I—

I came away from this post feeling, I imagine, the way an autism-recovery newbie might feel after some time on Finding My Kid: What? How? How could I possibly do all that—do anything close to that—on top of the day-to-day grind I already endure? Martin attends school; we’ve established that. He has at least two activities after school every day, which include taekwondo practice, music lessons, psychologist appointments, social-skills playgroup, reading tutor. Then there’s homework (which still takes inordinately long, given his attention issues), trombone and drum practice, (now) chess practice, half an hour of iPad time (as a reward for completing everything else I just mentioned), dinner, two snacks, and school-mandated 20 minutes of reading before bedtime. We do his pills and drops at wake-up, breakfast, immediately after school, before dinner, during dinner, and at bedtime. When the dry brushing? When the detox supplements, which must be separated from everything else?

You may be thinking, hey, why not drop a few activities? I would love to. Here are examples of my excuses and counter-proposals:

  • The most cumbersome activity is taekwondo, which Martin does five times per week. He would attend seven times per week if the lessons were available. Most kids attend two or maybe three times per week. We indulge Martin’s habit because (1) taekwondo is one of the few activities that excite him, and (2) even coming twice as much as other kids, he still has trouble keeping up with them, and every time classmates have the opportunity to pass a belt and Martin doesn’t, the experience pains him.
  • His music lesson is a combined once-weekly trombone and drum lesson. He wants to join the school band next year, in fourth grade. He’s been at the trombone lessons for two years, and he isn’t very good. Last fall he asked to change to percussion. We don’t like him hopping around on a whim, so we allowed percussion only if he also stuck with trombone. Then he showed a knack for drums and immediately became a better percussionist than trombonist. If he’s going to succeed in band, drums are probably the key.
  • Chess is a new activity, at my urging. Our community has an active chess program for elementary kids, and I’d like to have Martin involved in at least one quiet, thoughtful activity with peers. The participants, however, have by and large been playing for a while, and Martin needs to catch up, so I have him taking a lesson once a week and practicing the other days. If I can’t have a hockey player, darn it, I will have a chess player.

The truth is, I would rather keep Martin busy. We still don’t have many play dates to speak of, and when he’s not busy, he’s whining for an iPad or for me to entertain him. Of course he needs to develop the skill of entertaining himself, but at least until he can read for pleasure, we probably aren’t there yet.

So there you have it. There are, indeed, parents who do more for their kids than I do for Martin. Far more—even excluding the subset of parents who must do more because their children are extremely high-need. I, too, become overwhelmed at the thought of all I should be doing.

I hope that a parent who reads Finding My Kid and thinks, “No way!” might nonetheless think also, “Okay, part way. I can do some of that.” So that’s the course I took. I analyzed the Regarding Caroline suggestions, took what seems do-able for us, and came up with a Martinized protocol:

  1. We will do a foot bath during iPad time at least four days per week. I prefer Martin to be seated at a table for iPad time in any event, because otherwise he hunches and puts his face too close to the screen.
  1. We will attempt dry brushing Saturday (or Sunday), Wednesday, and Friday. Those are the evenings when we tend to be less rushed.
  1. I will add herx water before breakfast and after school.

That’s it. Those are the suggestions I think I can manage.

And, mind you, the list is aspirational.

I Didn’t Wait for a Prescription When I Was a Teenager, So What Makes Me Concerned Now?

Happy Fourth of July! I’m going to spare you another painful post about school and bullying, at least for today.

You’re welcome.

Instead, let’s talk about cannabis. Medical marijuana.

According to governing.com, “[t]wenty-six states and the District of Columbia currently have laws broadly legalizing marijuana in some form,” and once the measures that recently passed in Arkansas, Florida, and North Dakota take effect, the total will be 29 states. “Some medical marijuana laws are broader than others, with types of medical conditions that allow for treatment varying from state to state.” Additional states (Alabama and Mississippi, for example) have passed laws allowing for marijuana possession in the narrow circumstance of an enumerated rare illness.

Recreational marijuana is legal in eight states. That’s not the topic of this post.

Medical marijuana is approved to treat “autism”—or at least some symptoms thereof, in a physician’s discretion—in only five states and the District of Columbia.

I’ll jump in here to say that medical marijuana should be approved in every state to treat (at least) profound autism, as at least one high-profile case in Texas demonstrates. On a personal note, make sure to tune to this blog tomorrow, for my friend Victoria’s testimony before the Minnesota legislature on what medical cannabis has done for her son, Julian.

In my State, New York, eligibility for medical marijuana rests upon diagnosis with “one or more of the following severe debilitating or life[-]threatening conditions: cancer, HIV infection or AIDS, amyotrophic lateral sclerosis (ALS), Parkinson’s disease, multiple sclerosis, spinal cord injury with spasticity, epilepsy, inflammatory bowel disease, neuropathy, Huntington’s disease[,] or chronic pain (as defined by 10 NYCRR § 1004.2(a)(8)(xi)). The severe debilitating or life[-]threatening condition must also be accompanied by one or more of the following associated or complicating conditions: cachexia or wasting syndrome, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.”

I love the drafting! “[C]hronic pain . . . must also be accompanied by . . . severe or chronic pain,” and “spinal cord injury with spasticity . . . must also be accompanied by . . . severe or persistent muscle spasms.”

For almost a year, I’ve been carrying (but not using) a prescription for medical marijuana for Martin. The prescription was written by Martin’s New York autism physician, not by his California doctor. (And don’t confuse the New York autism physician with Martin’s regular pediatrician. We have a whole medical team.) The prescription is based upon Martin’s irritable bowel disease, which is a qualifying condition, along with the complicating condition of chronic pain. So Martin qualifies for medical marijuana in New York, no doubt. At the time the doctor wrote that prescription, he suggested that medical marijuana could also help Martin with sleeping, attention, and anxiety. Martin was having trouble sleeping again during that particular stretch, an issue that resolved on its own during the intervening months. His attention also has improved this year. His anxiety—well, keep reading.

When, several months ago, I mentioned the prescription to Martin’s California doctor, whom I consider his “primary” doctor for autism recovery, she balked, albeit gently. Martin neither suffers from seizures nor engages in self-injurious behavior, the two autism-related symptoms medical marijuana may help most. Without a clear-cut need, why not err on the side of safety, given the dearth of research available on how cannabis affects the developing brain? I investigated and found that she was correct about the lack of applicable studies. Most research about brain development focuses on recreational marijuana use (of high-THC product) by teenagers; my own search yielded almost nothing about the downsides of medical marijuana in childhood (and I know there must be downsides, regardless of dispute from advocates). With inadequate reassurances, and given that Martin’s sleep and attention are pretty strong these days, I tuck the prescription away again.

But lo! The anxiety. Martin’s anxiety level is so high. (Bad pun for a pot post? Let’s call his anxiety level “Everest-like” instead.) Martin seems to walk the Earth searching for reasons to lose his cool. Two weeks ago, we were Upstate, whence I hail, and Martin had the opportunity to play with same-age cousins he rarely sees. Martin was having a decent morning, acting sociable, until the moment his cousins arrived, whereupon he left reality and switched to talking nonsense (“There are vampires in New York! They are moving to the capital building, to live in the rotunda!”)—eliminating any hope for productive interaction with the cousins. It was plainly his anxiety, up to no good.

And the meltdowns. On the last day of school we invited friends and classmates (both challenged and typically developing) to a pool party. I grilled burgers, beef for the guests and boar for Martin. I had a variety of burger buns on hand for the kids’ diets and allergies. I had no bun for Martin’s burger, because he has never had, or requested, a bun. This time, he did request a bun, and became agitated when I wasn’t able to produce one for him. I wanted to avoid a meltdown, especially in front of the typical classmates, so I let Martin eat an Udi’s® Gluten Free Classic Hamburger Bun. (According to the listed ingredients, these rolls contain resistant corn starch, cultured corn syrup solids, maltodextrin. I never would have given one to Martin under ordinary circumstances.) About ten minutes later, Martin was screaming and clawing at his torso. He’d had some sort of allergic reaction, to something. I pulled off his swim shirt and saw his midsection covered in red welts, with bumps emerging before my eyes. I shoved a spoonful of dye-free Benadryl into his mouth a tried to calm him.

Too late. Martin had slid into his perseverative place, impenetrable by reason or consolation. Awash in tears, he struggled to speak. What brought him there was not, as you might expect, the allergy (terrifying as it had been for me). Instead, Martin had connected the rash with the burger bun and guessed that he would never again receive such a bun. I had no idea whether Martin was reacting to the Udi’s roll; it could as likely have been residue from the beef burgers, or given that he was affected almost exclusively from waist to chest, some contaminant on his swim shirt or something he’d got into around the pool. Martin, however, was not to be dissuaded: The bun was at fault, and now he was never going to get a bun again, never, ever, and Mommy? Can I have another bun? Can you go to the store right now? But never, ever, never again. I hustled the nonsense and tears and screaming into our kitchen, away from the gawking of Martin’s guests.

This is the kind of rigidity that Martin’s anxiety imposes: If I have not foreseen every contingency, including the possibility that he might demand a burger bun for the first time, we risk a setback. If Martin faces any new situation, like meeting cousins, anxiety consumes every social skill he’s developed.

It’s come to the point where I see anxiety hampering Martin’s recovery. His anxiety wrecks havoc with his peers, who respond by alienating him, which further exacerbates the anxiety. The same spiral happens at home. I’m constantly on edge, for fear of provoking a meltdown, and I’m certain Martin perceives that tension, which then prevents him from relaxing. Who could regain health under such circumstances?

You might say I’m approaching desperation. I know that the long-term solution to anxiety is to alleviate its underlying cause, whatever that may be. (I suspect, with little basis other than mommy intuition, that it’s related to the heavy-metal burden we continue treating. Heavy metals can lead to brain inflammation. Cannabis can reduce brain inflammation. Martin’s California doctor thinks the cause is more likely babesia.) But I’m having trouble looking long-term. Martin needs help now.

I’ve been researching. (Remember, I don’t science well.) I’ve learned that the human body produces endocannabinoids, which act as neuromodulators for various cognitive and physical processes, including the regulation of anxiety-dependent behavior.

The cannabis flower secretes compounds known as cannabinoids. Examples include THC (tetrahydracannibinol), which is mostly responsible for marijuana’s psychoactive effects; CBN (cannabinol); CBG (cannabigerol); and CBD (cannabidiol). (Cannabis secretes dozens and dozens of distinct cannabinoids.) Cannabinoids mimic the effect of natural endocannabinoids in our system; they bind to receptor sites usually available to endocannabinoids. THC generally binds to receptors in the brain called CB-1 receptors, while other cannabinoids generally bind to receptors in cells of the immune system called CB-2 receptors. CB-1 receptors affect anxiety and arousal during novel situations. CB-2 receptors affect inflammatory response. Cannabis products can be manipulated to adjust the content of the cannabinoids to address specific concerns.

The endocannabinoid system has been implicated in behaviors associated with autism, such as emotional response, behavioral reactivity to context, and deficits in social interaction; “it can be hypothesized that alterations in this endogenous circuitry [of the endocannabinoid system] may contribute to the autistic phenotype.”

My research also piqued my interest in low-dose nicotine theory, which has shown some success in treating ADHD. That investigation is ongoing.

I’ve been making inquiries with trusted friends in the autism-recovery community. My friend N— noted that she has been administering CBD to her son to help with communication and rigidity, but to little or no effect. I have also given CBD oil to Martin, both the HempMeds® brand and the Plus CBD Oil™ brand (because no THC is present, CBD oil does not usually require a prescription), and have seen nothing from the CBD alone. N— noted that according to the latest research she’s seen, alleviating most autism symptoms requires at least some THC to be present. I think that is correct, and the alternative we are considering currently is using a prescription that would contain some amount of THC: low THC and high CBD.

My friend D—, whose son suffers from both autism and epilepsy along with other medical complications, stressed the importance of careful observation and moving quickly to adjust the cannabinoid ratio (e.g., THC:CBD:CNG) in the hemp product when necessary. D— raved about the difference medical marijuana has made for her son, who has progressed from as many as a dozen major seizures per day to only a few seizures per week. On the other hand, D— was distressed when the THC ratio in her son’s product was increased too much and the nine-year-old seemed “high” before developing a case of the munchies. They quickly reverted to a prior formula.

With my friend R—, I had a lengthy pros-and-cons conversation by text message. For me, the highlight was realizing this, late in the days-long exchange:

My text: “Talked with N—, talked a LOT with Adrian. I think we are going to give mm a shot. I really feel like the anxiety us starting to impede Martin’s recovery. But I’m agonizing over this one. So scared of the effects on cognitive development.”

R—’s text: “I think if you give it a shot for a trial, maybe couple weeks, you aren’t going to do much if any damage.”

My text: “My real worry is that it will work, and we’ll go long-term.”

See how that works? I mean that medical marijuana is intended to be a bridge measure, to alleviate Martin’s anxiety while we work on eliminating the causes of that anxiety. I’m worried that if the bridge measure is successful, we might make it a very long bridge indeed, the attendant consequences be damned.

Last week Martin and I visited his California doctor, and I raised the topic of medical marijuana again, this time more intensely, given Martin’s continuing trouble with anxiety and my own increased facility with the topic.

“You’re looking for my blessing?” Dr. C— asked.

“Not your blessing,” I responded. “This decision I actually think Adrian and I have to make, as parents. But I’d like confirmation that bridging with medical cannabis won’t interfere with any of your protocol for Martin.”

“It won’t.”

With that, the balance tipped. In September, as Martin enters third grade, if nothing has changed with his anxiety, we will likely test low-THC medical-grade cannabis, at least short-term. Having put so much time into research and finally reached a decision, I’d like to get started immediately. But I’m drafting this post from a plane to Nicaragua—I keep thinking I need to tell you about that!—and won’t return home until September. However the laws are evolving in the States, I’m not foolhardy enough to carry marijuana abroad, not in any form.

Ultimately, I know that medical marijuana will not heal Martin. My interest in its use is solely as a bridge measure, to boost the real recovery process.

Have I mentioned that Martin is currently obsessed with bridges?

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.

Boom! Booh-Yah!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mid-Air Without a Net

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.

Needlessly Suspicious

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?”