Tag Archives: supplements

Mid-Air Without a Net

Posted on by findingmykid
9

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.

Martin in Paradise

Posted on by findingmykid
14

For the last ten days we’ve been vacationing in Costa Rica. The “we” comprised me, Adrian, Martin, my mother and stepfather, my two older brothers, Adrian’s mother, and Adrian’s brother. Nine people. Nine people together in a house on the beach, off the beaten path.

I had trouble finding organic fruits and vegetables, and I suspect the papaya we ate may have been genetically modified. I used olive oil that was partially refined. The cookware was aluminum. Martin had seafood daily, mercury be damned. He ate way too much rice, probably too much fruit, and even homemade fruit juice. I found some locally made treats with oats, nuts, and raw agave, but I couldn’t get any intel on whether the oats were gluten-free. I gave Martin the treats anyway.

We ran out of several supplements, enzymes, and antimicrobials (poor planning on my part), including mucuna, serrapeptase, MitoSpectra, Nose & Lungs, cumanda, and Boluoke.

We had no set schedule, so Martin never knew what we might throw at him in a day. We didn’t do his vision exercises. His glasses sat abandoned, unworn.

We pushed his limits, sometimes over his protests. We took him zip-lining and horseback riding, made him a passenger on ATV’s and jet skis, insisted on swim lessons.

He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.

In the face of these shortcomings and stress, Martin—soared. Martin’s had trouble sleeping these last couple months. In Costa Rica, he volunteered bedtime by 7:30 pm and slept 10 or 11 hours unbroken. His iPad requests, which at home are a near-constant whine, decreased markedly. On our few prior visits to beaches (I’m not a fan), Martin has refused to let the salt water rise above his knees. After a week in Costa Rica, he bobbed neck-deep as the ocean waves tossed him to and fro. Daily, he refused to leave the beach.

He conversed with his uncles and answered strangers’ questions. He used new expressions.

Overcoming recent food-choice rigidity, he rediscovered tropical fruits and ate mango, pineapple, and papaya with abandon.

Because we were without North American television, Martin could not watch his fixation of late, Mickey Mouse Clubhouse. He managed without complaint. Instead, he drew pictures.

One afternoon, Martin was at a local bar/café with Adrian, my brother Eddie, and my brother-in-law, Pancho. The establishment was about 300 yards from our house, past a swim pool, an exercise plot, and a several haciendas. I was in the house showering when Martin entered the bathroom and said casually, “Hi, Mommy. I came home alone.” I told him to scram—after all, I was showering—and his statement didn’t quite register until I was toweled and dressed and found a text message from Adrian: “Martin is coming home. Make sure the door is unlocked?” Adrian had indeed authorized Martin to walk home unaccompanied, and Martin had achieved the feat, without getting lost or wandering off.

Just sayin’, I would not have let Martin walk home alone. But Adrian did, and out of the decision came some measure of independence.

I’m not saying that 10 days in Costa Rica brought a miraculously fully recovered Martin. Not by a long shot. He was too distracted to get the full benefit of those swim lessons. The pictures he drew were all of marching bands or orchestras. (He used to draw only pictures of The Beatles. Now he draws only marching bands and orchestras.) He engaged in a lot of oral stimming: “mouth noises,” I call the sucking-and-clucking sound he makes. He showed virtually no interest in the other kids scampering and riding bicycles in the neighborhood. Our last full day in Costa Rica was a bad day; sneezing and maybe teetering on sickness, he requested another round of zip-lining but then melted down and refused to participate. He repeated himself, nervously. He spaced out.

Still, overall, Costa Rica brought us a behaviorally improved Martin. Indisputably.

I don’t know what made the difference. Sea water? Clean air? Reduced EMF’s and cellular radiation? Extended family? Time to be a kid?

We’re on the plane now, headed home to the New York metropolitan area. (You know how I love to airplane-blog.) Martin just told me he wants to watch Mickey’s Clubhouse, when it’s on at home. I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life.

Would I have that in me? Would Adrian?

New Year!: We Met One of Adrian’s Colleagues for a Drink

Posted on by findingmykid
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New Year’s Eve, for our après ski, we met one of Adrian’s colleagues at a distillery. This particular colleague, like most, doesn’t know our son has autism, and whereas the colleague has typically developing children in the same age range, he would be able to spot any differences. We didn’t want Martin to “stand out.”

One way Martin still stands out is ordering food. When we are in a restaurant, he likes to order by himself. That’s fine, if we are in a restaurant whose menu we already know. When we are in a new restaurant, I have to ask eight million questions. The hamburger—is that just ground beef, or is the beef mixed with bread crumbs? The sweet potato fries—do they have any breading or coating? What kind of oil are they fried in? What else is fried in that oil? The grilled calamari—could we get that without the garlic butter? And the whole time I’m asking, Martin interrupts, usually to yell what he wants: No, no! I can get the calamari! Can I get the calamari? I don’t want salad! Occasionally he also has a mini-meltdown over what’s available (or not available) for him to eat, in which case I take his hand and lead him outside until he calms down.

So we were glad to arrive twenty minutes before Adrian’s colleague, have a chance to peruse the menu (the colleague suggested the location), and come up with the best option, both nutritionally and in terms of avoiding a meltdown. By the time the colleague joined us, Martin was occupied with my iPhone while happily downing a grass-fed steak and French fries cooked in canola oil.

Wait. Potatoes? Canola oil? Do we allow Martin to eat potatoes and canola oil?

Generally speaking, we do not. Potatoes are an occasional summertime treat, organic and roasted on our outdoor grill. Canola oil almost never works. Most canola oil comes from genetically modified crops, and even non-GMO “Canadian oil” is refined (hexane-processed?), bleached, degummed, deodorized rapeseed oil in which omega-3 fatty acids have been turned into trans fatty acids. Why would I let Martin ingest that?

Well, because we were traveling, and when we travel, and encounter new situations, and have to “perform,” some restrictions loosen. A bit.

Traveling, depending on where we go (for example, I can do more at my parents’ in Texas than I can in a suite in Chicago), alters:

  • Diet, to a modest extent. Martin’s diet is always free of gluten, dairy, soy, corn, and refined sugar. Beyond that, some specifics slip, including the aforementioned potatoes and canola. It can be hard to ensure organic food, or even non-GMO. He might also miss a day or two of broth. We traveled to Utah on a Saturday. He went without bone broth Saturday, Sunday, and Monday. By Monday afternoon I’d got my hands on a marrow bone and simmered a pot of broth.
  • Cookware. Even at home, my cookware isn’t perfect. Stainless steel remains puzzling, in terms of purity, and I’m never sure if my cast iron is seasoned properly or clean. In any event, at home I cook with All-Clad and cast iron, with mostly stainless-steel or wooden utensils. Whenever we travel, we rent accommodations with a kitchen, and unless we are staying long enough to justify a purchase—for example, when we were in Europe for ten days and I bought a fine strainer and a pot, both of which I brought home—I use what comes with the place. That might mean a plastic spatula, or even, egads!, nonstick pans.
  • Detox baths. At home, Martin takes two or three detox baths (two cups Epsom salt and one-half cup baking soda) a week, depending on whether he’s also used the sauna. Epsom salt is heavy to carry, and I don’t always trust other bathtubs. What product was used to cleaned it? Could I rinse it well enough? There is no point in trying to detox Martin in a tub with excessive chemical residue.
  • Exercises. Right now, we don’t have HANDLE exercises to do. Martin does, however, have four short exercises per day for his vision/neuroplasticity. At least, he has four short exercises when we are not on the road.

We do have absolutes, stuff that doesn’t change, regardless of where or when we travel. Martin takes his supplements, always. I’ve handed him pills in rental cars, measured drops at airport gates, mixed powder into restaurant beverages. I also find him fermented foods, daily, wherever we are. Martin no longer takes probiotics, so fermented foods are his probiotics. Plus, it’s easy enough to find sauerkraut or another cultured vegetable these days, if not kombucha.

The last absolutes? Love, and plenty of attention. Martin always gets those.

I’m Going to Need to Explain It Better

Posted on by findingmykid
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Well, this was bound to happen, sooner or later.

Over Thanksgiving, I brought Martin supplements as he was playing in his bedroom. He swallowed them without liquid, as he does for all pills other than Li-Zyme Forte, which he calls his “hard-to-swallow pill.” I don’t usually deliver supplements to Martin’s bedroom; we do them in the kitchen, preferably with meals. On this occasion, with my family visiting for the holiday, I was trying to get a jump on the evening protocol and make dinner a more normalized affair.

Without looking at me, still drawing a picture on his easel, Martin asked, “Why do you give me these pills?”

Ooooo. Okay. I said, “Remember when we talked about your tummy having troubles, and how when your tummy has troubles, it can make it hard to pay attention?”

“Sure.”

“These pills are meant to help your tummy work a little better.”

“Do my friends take pills?”

“I’m not sure about all your friends. Bobby does, and so do Z and Jackson.” Those are friends whose families treat their autism and other challenges biomedically.

“Some of my friends take pills, but not all of my friends?”

“I think that sounds right.”

“Okay,” Martin said. “I’m drawing a picture of the Beatles.”

“I like it,” I said, relieved that he’d changed the topic.

The conversation left me with two take-aways:

  1. Martin is bound to ask the questions again, and probably won’t let me off so easy. I’m going to have to think carefully about how to respond.
  1. One of these days, I’m going to get hit with the bomb. Martin is going to ask, “Do I have autism?” We came close once already. We were out to dinner with friends when Martin, who took especial interest in street signs around the time, asked, “Mommy, what’s a ‘Child With Autism Area’?” I responded that a sign like that means that drivers should be extra careful because a child who lives nearby might not realize how dangerous it is to be in the street. Then Martin asked what autism is. As Andrés and our dinner guests listened in silence, I responded, “Autism is a condition that can make it difficult to pay attention to what’s going on around them, or difficult to talk to other people.” I waited, mildly panicked, for Martin to ask whether he has autism. But he didn’t. He changed the topic. Bomb dodged.

Der Process

Posted on by findingmykid
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I’ve written before about my scrapes with the Transportation Security Administration.

I travel with Martin, a lot. When we fly, I carry his myriad pills and drops and liquids and compounded formulations in a heavy-duty black shoulder bag. (It’s repurposed. Once upon a time the bag held my breast pump.) Many of the supplements that aid Martin’s recovery are homeopathic and otherwise imprinted or finely calculated. I will not allow the supplements to pass through the security x-ray, because it can scramble their delicate properties.

Because of Martin’s special diet, I also have to carry food in my knapsack. In the past, my go-to has been nut butter with rice crackers. Now I like coconut butter with crackers. The TSA doesn’t like either.

The scene changes each time we pass security.

Regarding food, I’ve been told, at various times:

(1) nut butter is no problem and can come on the plane;

(2) nut butter is a problem unless it is in a sealed, unopened container;

(3) nut butter cannot be in a sealed, unopened container because all those containers are too big;

(4) nut butter is exempt from security if I’m carrying a doctor’s prescription for Martin’s restricted diet (I always am);

(5) our doctor’s prescription for Martin’s restricted diet makes no difference to what we can carry on the plane; and

(6) we can bring nut butter on the plane only if I leave the security line, take all of my belongings and Martin to the food court, request to-go containers from some restaurant, divide the nut butter into three-ounce portions among those allegedly available to-go containers, and return to security with the newly packaged servings. On the day that this food-court option was given, the TSA agent insisted that the repackaging could be accomplished in the ten minutes before our flight was to board. It became one of many flights on which Martin ended up without nut butter.

I never know which story we’ll get about the nut butter, or coconut butter, when we reach the front of the security line. And yet, traveling with Martin’s food is a piece of cake—sorry—compared to carrying supplements that should not be scanned.

We’ve been in Texas, on Thanksgiving vacation. Last week, when Martin and I flew from New York to Texas, we encountered a sympathetic TSA agent. I unloaded everything from the black bag into a gray security bin. The agent took the bin immediately, asked what it contained (“My son’s medications”), used one swab to check all bottles quickly, and called Martin a beautiful boy. I repacked the black bag, and we were on our way in less than five minutes.

This morning, preparing for our flight home from Texas, I requested a hand-search of the supplements. I unloaded the several dozen bottles from the black bag into a gray security bin. No one came to take the bin. A TSA agent had me stand in front of the metal detector holding it, as passenger after passenger walked by, each (it seemed) examining the contents of my bin as s/he entered the metal detector. I heard, “Hand-check on one!” called several times, but the agent in charge of hand-checking decided to restock the gray bins of three lines before showing up, so I stood in front of the metal detector a full five minutes with my bin. At length a female TSA agent approached and offered to set my bin aside while we waited for the elusive agent in charge of hand checking. Then I stood, bin-less, another two or three minutes until I was invited to pass, not through the metal detector, but through a full-body scanner, the next line over.

Adrian traveled with me and Martin today, thank goodness. While I stood there waiting, Adrian accompanied Martin through the regular metal detector (long-time readers of this blog know my misgivings about the metal detector) and collected my laptop, knapsack, boots, and jacket from the conveyor belt. On the other side of the full-body scanner, I was informed that, because I had requested a hand-search of Martin’s supplements, I would be subject to a full-body pat-down. I’ve received the pat-down treatment maybe twice before; its necessity appears randomized. A male agent ushered me into a glass-wall-demarcated waiting area and told me to await a female agent. I stood, on display in my glass-walled enclosure, until yet another agent moved me to a chair. Some twelve minutes had elapsed since I took off my boots for security.

The female agent materialized, donned latex gloves, and told me to stand with arms outstretched while she ran her hands over my body. Meanwhile, a male agent began swabbing each individual bottle of Martin’s supplements. He swished the swab cloths through a machine, which at one point sounded an alarm. He relayed the alarm news to the TSA supervisor, who alit from his perch behind us and asked which bottles were in the alarm group. Apparently 18 bottles were in the alarm group. The TSA supervisor instructed the agents to open each of those 18 bottles and retest with a sample stick.

Next the supervisor asked, “Are these all your belongings?”, indicating the black bag and assorted supplements.

I should have said yes. Instead, I answered honestly: My husband had the rest of my belongings.

And where was my husband?

Over there. I indicated where Adrian had taken Martin to sit on a bench.

The supervisor demanded Adrian’s return. Adrian complied, carrying his briefcase and my knapsack.

The supervisor ordered a hand search of my knapsack, which had already cleared the x-ray machine. Then, for reasons unclear to me, he told the agents to seize Adrian’s briefcase and search that, too. Adrian surrendered the briefcase and returned to the bench to occupy Martin. By now 20 minutes had elapsed since I removed my boots.

The female agent sat me in the chair again, to run her hands over the soles of my feet. With the pat-down thus concluded, she began opening bottles of supplements to sample.

“You can’t do that,” the male agent admonished. “Make her open each bottle.”

He meant me. I rose from my chair and picked up a bottle.

“You can’t do that,” the male agent admonished again, this time directed at me. “She has to hold the bottle while you open it.”

I gave the bottle to the female agent, who grasped it in a latexed hand while I unscrewed the top. Then she dangled a paper sample stick over the top of the bottle, dropped the paper stick into a magic container, and asked me to recap the bottle.

Then she picked up the next bottle. The next of 18 alarm-group bottles.

The male agent opened a small cooler containing Martin’s refrigerated supplements and an ice pack. He told the female agent she should sample the refrigerated items, too.

Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed.

Beside us, the male agent emptied Adrian’s briefcase. Bond indentures, credit agreements, and a Longhorns t-shirt spread across the table. More than 30 minutes had elapsed since I removed my boots.

The female agent glanced at the supervisor, now atop his podium again, and whispered, “I’m sorry about all this.”

I have a son with autism who takes a million pills and drops a day. Everyone here is staring at us. I am all for airline security, but why do some TSA agents have to make this an extended production while others let us through with hardly a pause?

I said, “These are my son’s medications. I really don’t like them handled.”

She shook her head. “I know. I’m sorry.”

Bottle open, paper stick, magic container, bottle closed.

The male agent announced that he couldn’t fit Adrian’s laptop back in the briefcase. Adrian left Martin sitting on the bench and came to gather his documents and other belongings.

Bottle open, paper stick, magic container, bottle closed. Finally the agent finished, leaving me with an empty black bag and a table covered with bottles. I started returning everything to the bag, embarrassed by a few tears of frustration.

Some 40 minutes after removing my boots, I carried the black bag and my knapsack to the bench where Adrian had the boots waiting for me.

“Is it always this bad?” he asked.

“No,” I said. “Sometimes it’s better.”

We started walking toward our gate.

“And sometimes they do all that while I also have to keep track of Martin. And then it’s even worse.”

What’s Disappeared

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It’s accounting season. Adrian’s assistant has prepared a summary of what our family spent last year on recovering Martin. Supplements, therapies, unreimbursed doctor bills, plane tickets to see specialists, that sort of stuff. It does not include expenses associated with Martin’s restricted diet, like buying only organic or making weekend farm visits for meat. Nor does it include my kitchen make-over, continually purging plastics and aluminum in favor of glass or stainless steel.

Even without the foods and cookware, the total is a large number. Not astronomical. Not bank-breaking. But large.

“Did you think it would be this much?” Adrian asked me.

I replied, “I’m looking at it like this: If someone told us last January, ‘Give me this amount, and within a year Martin will respond to his name, will make eye contact consistently, will interact with friends, will move like a neurotypical child, and will speak in complete sentences,’ we would have written that check, right?”

“Of course,” Adrian said.

He seemed mildly offended that I’d asked the question. But I was on a roll.

“And if someone told us last January, ‘Give me this amount, and within a year Martin’s lethargy and toe-walking and aimless drifting and low muscle tone and sleep problems and clumsiness will be gone, and his echolalia will be nearly gone,’ we would have written that check, right? Because that’s where we are. That’s what’s disappeared.”

Adrian waved his arm in agreement, putting an end to my roll. “We would have paid ten times so much. You know that.”

“So let’s keep it going,” I said.

And we fist-bumped.

We’re Going Home, and I’m Hoping To Find Martin in Such Good Shape That I Have to Loosen Up

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We go home tomorrow, Adrian and I. We’ve been away just over a week. I was determined to post every day this vacation, and except for yesterday, I managed. Yesterday we visited Yad Vashem, Israel’s center for Holocaust documentation, research, education and commemoration. What we saw there made my work with Martin feel almost petty by comparison. I took the night off from writing.

Today I spent longing for Martin—his scent, his charm, his antics. Apart from the alarming reports of tantrums, news from home has been upbeat. Martin has slept through every night while we’ve been away, eaten well, and achieved some new proprioception milestones. He appeared happy to return to school this morning. He may understand that he’ll see me and Adrian tomorrow night.

If we arrive home and find Martin in as good shape as we left him, I may loosen up a teeny-tiny bit. I may agree that others can manage Martin’s recovery needs, at least in short doses. Indeed, although Adrian doesn’t know yet (he will as soon as he reads this post), I have big plans involving him: If my mother could learn and accomplish Martin’s entire daily supplementation routine, Adrian can certainly master the morning routine. And if Adrian can manage the morning supplementation routine, then one weekend I can prepare Martin’s breakfast the night before, trust Adrian to administer the pills and oils, and sleep in.

Yes, maybe I can sleep in.

The dream is bold. We’ll see what tomorrow brings.