Pinpointing

When people ask me what treatment “helps Martin most,” I shrug and say, “Dunno. Some combination of what we’re doing, I guess.”

We’ve dragged ourselves through a rough couple months lately. Symptomatic, crabby, stagnated months. Regression. Over the last eight days Martin has improved, and I am praying the road is becoming firm again.

I ask myself, and others have asked me, what provoked this latest months-long slog. My first thought is, “Dunno,” followed by, “Viruses seem to be an issue. Also chronic internal inflammation. Unavoidable radio waves. Adrenal stress. Something environmental? The construction happening directly north, east, and south of our apartment right now? Our own bathroom renovations? Parasites, maybe. Or electromagnetic fields. Or an issue at school,” followed by, “Oh, hell. I dunno.”

Nevertheless, I have two recent incidents that either (1) put the lie to unmitigated “I dunnos,” or (2) demonstrate that I retain an active imagination.

Incident One: Evil Metal Detector?

Two weeks ago we traveled to Chicago for doctor appointments. Over the course of the three-day trip Martin’s symptoms ameliorated, somewhat, and by the time we arrived at O’Hare for an evening flight home, he was able to hold my hand and wait in the security line—without dancing, skipping, wresting his little wrist from my grip, wandering away, or staging a meltdown. He was doing well.

When we arrived at the front of the line, I asked the TSA agent on duty whether I could request that my son be hand-searched, or at least scanned with a security wand, instead of walking through the metal detector. He has a neurological condition, I explained, and I prefer not to expose him to the magnetic field.

The agent seemed bemused by my request but responded helpfully. Because they aren’t allowed to touch children under age 12, she said, my request would require calling a supervisor from another part of the airport. Fifteen or 20 minutes might elapse before he arrived. Should she summon him?

I hesitated. We had half an hour until boarding time, but who knows what “15 or 20 minutes” really means, and I still had to clear security myself (Martin’s drops and pills being hand-searched while I argue/bargain with agents, flashing prescriptions for special foods and liquids in larger-than-three-ounce containers), then move Martin a quarter-mile to the gate.

“It’s okay,” I said. “He can pass the metal detector.”

But it was not okay. Immediately after walking though the metal detector, Martin became unmanageable. He refused to sit while I completed the security check, ran away from the security area despite admonishments, and whined nonstop. When we tried walking to the gate, he could not hold my hand or focus enough to progress more than 20 feet without crying. The flight was delayed (and why would it not be, at a moment like that?), so I took Martin to the Admirals’ Club family lounge, where he spent 90 minutes alternately running circles around the room and collapsing on the floor. After half an hour I retreated into my own world, drinking wine and texting friends for support. Quality parenting, I know. I should mention that the family lounge has glass walls, so dozens of business travelers in the next room witnessed our mother-and-son performance, albeit without sound.

Why did Martin’s behavior change so radically when he passed through the metal detector? Did the magnetic field affect him, or was the decline coincidental, triggered instead to the onset of travel exhaustion or some other factor? The Health Physics Society’s webpage on security-screening safety concludes, “[B]ecause of its nonionizing properties, the magnetic field generated in a metal detector will not cause harm to persons even with routine and/or repeated scanning.” A post on the BabyCenter website states, “Anything that generates or uses electricity, such as power lines or household appliances, produces an electromagnetic field. At the low levels a metal detector emits, this exposure is considered safe for everyone, including pregnant women.”

I will never know for sure whether the metal detector provoked Martin’s symptoms that evening. But something happened around the time he passed through. That much I witnessed.

Incident Two: Precarious Home Library?

Some weeks ago a nice fellow from Healthy Dwellings came over and completed a “healthy home evaluation” for our apartment. He spent several hours taking meter readings, testing water, checking air quality, and so forth. The resulting report showed that we’re doing pretty well, in most aspects.

One exception was radio frequency (RF), those electromagnetic waves that send data wirelessly. Ideally, RF levels should hover below 10 mW/m2. The lowest reading in our home—in Martin’s bedroom, thank goodness for small favors—was 137 mW/m2. In our living room, the level was 540 mW/m2, and in the library, the level topped out at a whopping 3,600 mW/m2. Our home library is an alcove set within the rafters (we live on the top floor) with a large skylight absorbing all that New York City has to offer (windows are the most common entry point for external RF waves). Our home library, because it is farthest away from any other apartment, is also where we keep Martin’s drum set.

As averred, Martin’s behavior improved last week. One particularly unsymptomatic afternoon Samara (babysitter) picked Martin up from school and brought him home, where I was cooking. When they arrived I completed several HANDLE exercises with Martin, watched him play with Thomas trains, and discussed with Samara how calm Martin appeared, steady on his feet and content to play alone. Samara agreed.

Martin then declared his intent to play drums and headed upstairs to the library alcove. Samara followed him. I returned to the kitchen. By virtue of an open floor plan, the library is visible from our kitchen. That helps me keep an eye on Martin and, in this instance, let me observe that, within five minutes of his going upstairs, Martin transformed into a different kid: running back and forth, flailing his limbs, unfocused. I called for Martin and Samara to come back downstairs.

It was another metal-detector moment. What caused Martin’s behavior to change from “with it” to “restless and in his own world”? Part of me wants to blame the library and its RF hurricane—because RF levels, at least to some degree, are fixable. Part of me thinks that I’m blaming the RF levels because I just discovered they are high in the library, and I’m prone to grabbing hold of any factor I can blame when Martin tanks. All of me admits, “I dunno.”

Pinpointing

These incidents raise a few possibilities.

First, I may actually have pinpointed some factors that affect Martin more than others. Brain-scrambling magnetic fields and RF waves!

Second, I may have seen connections that, in reality, don’t exist, and I may therefore explore yet more dead-end routes, like refusing to let Martin through metal detectors or blocking RF waves.

Third, the truth lies in some combination.

Doesn’t it always?

The Good Kind of Sleeplessness

I’m drafting only a short post this evening.

I’m tired, you see.

I’m tired because I didn’t sleep well last night. I lay in bed awake for several hours, until 2:00 a.m. I woke when Martin clambered into my and Adrian’s bed, around 8:00 a.m.

Here’s the thing: Martin didn’t keep me up until 2:00 a.m. He didn’t wake at midnight and rustle for hours while I hovered nearby, iPad in hand. Nor was I anxious, thinking that he’d be up as soon as I closed my eyes, or pondering his future.

Incredibly, I wasn’t able to doze off because I wasn’t tired. Each of the previous several nights, I enjoyed eight or more hours’ sleep. My body, apparently, felt sprightly enough to play a few additional games of on-line Scrabble and then gaze two hours at a near-full moon.

Since Martin’s ASD diagnosis almost two years ago, and even before that (from age 14 months on, he had sleep troubles), and even on vacation (I worry a lot), I cannot recall a single night when sleep eluded me because I wasn’t tired. Between 16-hour days managing Martin’s recovery process, and worrying about whether we’ll succeed, and sitting up with him, I function in a state of permanent exhaustion, punctuated only by degrees. Most nights, I lose consciousness before I finish a 30-second prayer. The remaining nights, anxiety so clogs my mind that I give up trying to sleep and wander the apartment “getting things done” throughout the night.

We’re on vacation this week, in a rented seaside house that compels relaxation. Martin has been sleeping well. My mother-in-law is traveling with us; she wakes with Martin each morning and washes and dresses him before releasing him to me and Adrian. Despite the crap summer we’ve been having, I am sleeping.

I’m off to sleep more now.

I Have None

I’m in Europe, on family business. My mother came to New York City to help Adrian with Martin, and I departed JFK, bound for Heathrow and then Germany.

Saturday, before I left, Martin was symptomatic. I won’t go into the symptoms. By now you know them.

Getting a few days’ distance from Martin usually does me well, in terms of perspective and rejuvenation. Nevertheless, leaving him is heart-wrenching, and I want everything to be perfect. I want him to be having the best day ever, so that I can think, Everything’s under control. I can be away.

Saturday I left thinking, Everything’s a disaster. I have no right to leave when he needs me here. Probably I’m just going to make things worse.

Please don’t look for a point to this post. I have none.

Prayers Made. Prayers Answered?

This afternoon in Jerusalem I tucked a slip of paper into the Western Wall. Scrawled on the paper was a prayer, for Martin to be healed. I made the same request, albeit in non-written form, at the Church of the Holy Sepulcher, the Chapel of the Ascension, the Church of All Nations, the Garden of Gethsemane, the Chapel of Dominus Flevit, and the Church of the Redeemer, where I attended Sunday worship.

I’m the broken record of the prayer circuit. But hey, Martin’s the one on my mind.

No upsetting messages arrived today from the home-front. Instead, Martin apparently walked on a foot-wide wall yesterday, while looking at his feet (hello, proprioceptive awareness!), ate a big dinner, and then slept 13 hours soundly. From this morning my mother texted a picture of Martin building a three-foot-tall single-column tower of blocks (“Martin’s Eiffel Tower,” she called it), entirely unassisted. Earlier this year Martin had trouble stacking three blocks on top of each other, and possessed neither the focus not the coordination to achieve any more.

That’s the report from 1 January 2012 in Jerusalem. I hope this heralds a good year. A very good year.

Without Martin

Readers, it’s been a week. For the first time since I started this blog, I let more than three days pass without a post.

I apologize.

I blame Christmas preparations—I didn’t accomplish even half a standard Christmas, but that’s a subject for a later post—, forging through dense briefing schedules in two separate litigations, sitting up at night as Martin’s had trouble sleeping, and preparing for the trip.

Yes! The trip! This is the big one, Adrian’s sixth-anniversary gift to me, and eight days without my Martin. My mother is staying in our apartment with Martin. We’ve gone backwards and forwards over his daily supplementation schedule, dietary restrictions, wants, and needs. I’ve filled the freezer with pre-prepared meals and organic meats. With the approval of Martin’s HANDLE therapist, he gets these eight days off from HANDLE exercises. And all week Samara’s been helping Martin learn this mantra: “Mommy and Daddy are coming back. Mommy and Daddy always come back.” As a result, he was okay when we left this afternoon. I said, “Daddy and I are going on an airplane and will come back next week. You’re staying with Grandma.” Martin replied, “Mommy is coming back another day. Mommy always comes back.”

I’m worried, of course. Not that my mother won’t accomplish Martin’s diet and supplements to the T. Not that my mother and Samara and even my visiting brother won’t be doting on him. I’m worried that he will be distressed without us, and more especially, that we could lose recovery momentum. These past few weeks have brought so much progress. I’ll have a hard time forgiving myself if our absence interrupts that, or prompts a set-back.

(“I’m not worried about permanent damage,” Adrian assured me yesterday. “I’m really not.”)

It didn’t help that, just before Adrian and I headed out, Martin seemed, as my mother put it, “a little spacey today.”

Nevertheless, I made it out the door, teary-eyed. I’m typing this on the airplane. We’re bound for Israel, landing in Tel Aviv and continuing by car to Eilat, then to Jerusalem, sandwiching a day trip to Petra in Jordan. This was all supposed to be a surprise, but some weeks ago I forced Adrian to reveal the itinerary. Not knowing our destination was just shoveling anxiety onto my already gigantic pile of hesitation about leaving Martin. It’s only the second time, since we radicalized his treatment, that I’ve been away more than a night. The first was a four-day trip to Germany for a family emergency, during which Samara moved into the apartment and helped Adrian manage the routine.

So there you have it. This blogger is on her way to the Holy Land and will have a week to contemplate the course we’re on with Martin. I’m determined to post daily, both to take advantage of the time away and to make amends for the recent posting dearth.

An eight-day travel journey, meant as a break from a years-long recovery journey.

Here we go.

Airport Fun, Part One: The Bathroom Miracle

We traveled yesterday, Martin and I, to visit his excellent Track Two doctor. I intend to post the doctor’s comments (at least, my interpretation thereof) once I’ve had a chance to ponder all she said. For now, I want to discuss the trip, and more specifically, positive and negative experiences we had underway. It will be another two-part post, starting tonight with the positive.

Going to visit Martin’s Track Two doctor means a schedule something like this: We rise early and eat breakfast and take morning supplements at home. Adrian drives me and Martin to the airport, where the two of us clear security and fly a couple hours. Upon landing we take a quick bus ride to a car-rental office. Then, in what I consider the most challenging part of the day, I make Martin wait inside the rental car—there’s just no way I could keep him safe in a rental-car lot with my attention diverted—while I install the toddler seat. Whatever the season, it invariably seems to be either sleeting, pouring rain, or freezing while I spend 20 minutes with my backside hanging out the passenger door, installing that damn toddler seat.

(I am yet to find a car-rental company that will install a toddler seat for me. If you know one, please send the information to findingmykid@yahoo.com.)

Next I drive us 40 minutes to the doctor’s office for a two-hour (give or take) appointment. After that we head back to the airport, surrender the rental car, ride the bus, clear security, wait around, and fly back to New York, where Adrian meets us at the airport, usually between 10:00 and 11:00 p.m. During this whole process I feed Martin food that I’ve cooked at home. For myself, I drink a lot of coffee and pick up what I can, here or there.

It’s an exhausting day. A lot of moving from place to place. A lot of walking hand-in-hand.

And, of course, a lot of visiting strange potties.

Yesterday we hit four airport bathrooms. Don’t worry: For a change, I will not address any, ahem, bodily functions in this post. The topic du jour is what happened outside the stalls.

Bathroom No. 1. No paper towels! The bathroom had only hot-air hand dryers. Martin loves paper towels and fears hot-air dryers. (Oddly, he likes hair dryers. When I dry my hair, he waits for me to whoosh his bangs back with the hot air, scampers away, then returns repeatedly for another whoosh.) In the past, a paper-towel dearth might have caused a meltdown. Yesterday when we finished washing our hands, I said to Martin, “Oh! No paper towels. But you don’t have to use the electric dryer. Let’s go see if we can find paper towels anywhere else.” He accepted that, and we exited the bathroom peacefully. I planned, if Martin persisted in seeking paper towels, to grab some Starbucks or Auntie Anne’s napkins. (The paper-towel supply in my backpack was too precious to surrender, meant instead for in-fight snacks, spilled drinks, runny noses, training-pants accidents, and whatever else the day had waiting.) The napkins proved unnecessary. We strolled wet-handed to the gate, and Martin let go of his paper-towel dreams.

Bathroom No. 2. We were in a hurry. While he was throwing away his paper towel, Martin glanced up and saw that I was already leaving. In such a situation, Martin’s typical reaction has been to dawdle, maybe turn on a faucet or play with a stall door, and generally ignore me until I return to retrieve him and drag him out by the hand. Not yesterday. When he saw me leaving, Martin dumped his paper towel, ran across the bathroom, and took my hand. Paying attention to my cues? Picking up his pace to meet mine? Glory be, whose child was this?

Bathroom No. 3. I was so inspired by the Bathroom No. 2 breakthrough that I designed a little experiment to see whether I could replicate the success. After hand washing, I directed Martin to a wastebasket at the far end of the bathroom to discard his paper towel. While he was thus engaged, I moved to the exit area—it was one of those set-ups with no door, where you instead exit by maneuvering through a U-shaped passageway—and called, “C’mon, Martin, let’s get out of here.” Then I ducked behind the first part of the U-shape. As an unanticipated bonus, a full-length mirror on the bathroom’s near wall enabled me to watch Martin’s reaction. He looked up, realized that I had left, appeared briefly startled, and again came running. It’s not that long since I had to worry about Martin wandering away without so much as checking my location before he took off. To have him hustling and mildly panicked when he knows I’ve left a bathroom—well, that’s a plain miracle.

Bathroom No. 4. We were in a hurry again. The plane was actually boarding. I threw away the paper towel for Martin, grabbed him, and ran. So nothing to report, except maybe, Hey, did I tell you about Bathroom No. 3?

Coming attraction: The security-line tantrum.