Category Archives: Nuts and Bolts

The Posting Dearth, Explained

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It’s been a week, again. More than a week, without a post. I frustration posted last Tuesday, and then abandoned my readers. My own private cliffhanger.

Let me assure you that Martin is fine. We’ve started his new supplementation protocol, we’ve had ups and downs, and I’m back to—my, um, usual sunny self.

The blog dry spell occurred because I’ve been occupied with getting my business affairs in order.

I’m not dying. Not as far as I know.

Instead, I’ve quit my job.

Quit my job!

For nearly thirteen years, I’ve worked as an attorney for the same large law firm, and it’s a job I’ve always felt privileged to hold. I have talented co-workers who bring out my best efforts. I’ve been compensated well. Lawyer comprises a substantial part of my self-identification.

It seems like I should say the decision to quit was difficult.

It was not.

My quitting strikes a blow to the family finances, but not a death knell. I am very, very fortunate to be able to make the choice, and grateful for Adrian’s career to facilitate my lack of one. We determined, together, that Martin’s recovery requires (at least for a while) a parent dedicated full-time to the task. In the past months there have been too many ASD articles unread, too many tests uncompleted, too many exercises undone. I’ve been exhausted and unable to keep up. That must change.

It’s not that I am going to be unemployed. I’ve just stopped moonlighting as an attorney in order to concentrate on my day job, healing Martin—which is another job I will always feel privileged to hold.

This will, of course, leave more time for blogging about healing Martin. Please expect more regular posts. Perhaps daily posts. Perhaps too many posts. If I go a little crazy with it, let me know.

And so the next chapter opens.

Frustration Posting

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Months ago, when Martin was having more trouble sleeping—if you’ve been reading for a while, you may remember this—I would sometimes draft posts during those long midnight hours, sitting in his room with an iPad. To myself, I called it “exhaustion posting,” and I knew it wasn’t a good idea. When it’s 3:00 a.m. and I’ve slept eight hours during the past 72, it doesn’t matter how much progress we’ve made overall or how bright the future looks. I will have nothing nice to say.

I’m about to do something else that the reasonable part of my brain (the part that gets overshadowed, often) knows is not a good idea. Let’s call it “frustration posting.”

Why am I frustration posting when I know I shouldn’t?

Because I’m frustrated.

We’re in the dumps again. Crapsville. The Land of No Focus. The State of Bad Digestion. Obsession City.

Autism territory.

When Adrian and I returned from vacation last week, Martin’s symptoms were, I thought, more pronounced than when we’d left. I concocted several explanations—change in routine without school, anguish at wondering if his parents would return, a stale supplementation routine—that allowed for easy solutions.

We’ve been home now six days. So far, the easy solutions have failed. (I’ll admit that I have not yet updated the supplementation. I have a call scheduled for Thursday to discuss that with Martin’s excellent Track Two doctor.) Martin’s belly is distended. He has diarrhea. He’s scratching. And the behavioral symptoms have become yet more pronounced.

Getting Martin fed and ready for school this morning was like weaving a basket from cooked spaghetti. Nothing worked. He lacked the attention to put food in his mouth, absent constant nagging. He had no language to express what he sought and reverted instead to “You wan’ you wan’ you wan, I wan’ I wan’,” without object or variation. He refused to stand long enough to get his pants down for the toilet, or to don a jacket for the New York winter; when I tried to accomplish those tasks, he threw himself against me or fell to the floor. Adrian, who takes Martin down to meet the school bus, later reported that Martin had been unable to engage in even simple conversation like providing his teacher’s name.

This evening was worse. Evenings used to be the most difficult part of my day, because as Martin grew tired, he grew unmanageable, even less able to read my signals or control himself. I thought those days were over. Today he arrived at 5:30 p.m. with a babysitter, utterly hyperactive, laughing without obvious reason, jumping on the sofa, darting from chair to stair to table. At 6:15, when the babysitter prepared to leave, Martin began screaming because she zipped her vest. That’s a special new highlight, this fixation on zippers. Once the poor sitter managed to escape, from 6:15 until bedtime was a near-unmitigated scream-and-cry fest, punctuated only by bites of dinner and senseless verbal demands. “You wan’ bath. You wan’ not bath. No. No. No. You wan’ counter. Mommy is coming back. She’s coming back. You wan’ go outside. Outside.” Every chance he got, he grabbed my cardigan and yanked the zipper down or pushed it up until it caught my hair or the skin of my neck. He left his plate and ran around. He slunk from chair to floor and refused to rise.

When I finally got him into bed he tried to insist on wearing the tight winter vest over his pajamas.

I probably should have indulged him. Instead I refused. Scream-and-cry fests diminish my empathy. Insofar as scream-and-cry fests are symptoms of something amiss within Martin, they should cause the opposite, i.e., a flood of empathy. In the world of reason, that would happen. In the world of frustration, it does not.

So there you have it. The bad with the good.

Right now I’m telling myself that we turned the tide in late November and early December, and that we can do so again now.

Right now I’m hoping for a better day tomorrow.

Right now I’m trying to breathe.

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.

Prayers Made. Prayers Answered?

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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.

More Praise of Friends

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I have eleven close girlfriends from my high-school class. “The twelve,” we call ourselves. We’ve had bumps in the road, big ones, and yet 21 years after graduation, we’re more or less intact.

And when it comes to Martin, these friends have joined the struggle in ways I could have not imagined.

It was a high-school girlfriend, an EI practitioner, who first identified Martin’s disorder as autism and got us started in the road to intervention and recovery. It was another, a chef, who recently came to stay two weeks with us when Martin started eating meat, to prepare his special meals. It is others who read this blog, who offer listening ears, who email regularly just to ask how he’s doing.

Now comes yet another debt of gratitude. A high-school friend, who still resides in my hometown, sent a Facebook message, asking after Martin and what she could do to help. I hesitated, then reminded myself that I’ve decided to accept as much help as I can get, and made a request:

“I could use some venison.”

That must have sounded strange to my friend, who knows me as a long-time vegetarian. Probably it sounds strange also to anyone who doesn’t know that, in the semi-rural area where I grew up, people hunt. A lot. Before I became a vegetarian at age 16, I ate venison by the pound. It’s so lean and protein-dense, just what we’re seeking for Martin these days. It’s also difficult to procure, in Manhattan.

My friend responded that getting venison might be tough; the economic climate right now means most folks eat all of what they shoot.

I know, I said. No expectations.

Let me see what I can do, she wrote.

A couple weeks passed. I’d nearly forgotten the request when this friend’s chat box appeared on Facebook again, to say she had venison for me, stored in the freezer on her family’s farm.

As luck would have it, one of my brothers happened to be visiting our hometown last week, and then coming down to New York City on Monday to help my mother with Martin while we travel. I dispatched this brother to meet my friend and retrieve the venison, which now is snug and secure in my freezer.

“Hand-off was a success?” I texted my friend after she met my brother. “You rock so much. Thanks a million.”

“Yup…. No prob. Hope he enjoys. Mainly spiedie meat…hope that’s ok.”

Spiedies are a dish regional to the area where I grew up. They consist of intensely marinated meat skewered alongside vegetables and grilled. I panicked, briefly, my mind on the myriad non-Martin-friendly ingredients that might be in marinade. “Is that the cut, or has it been marinated?”

“Not marinated! I believe it is the cut but not cubed.”

“That is so ultra-perfect I can’t even say,” I texted, relieved and grateful to the point of effusion. “You are the bestest.”

“Nah…just a friend.”

Your blogger, headed from Israel into the Kingdom of Jordan.

Your blogger, descending to the ruins at Petra, Kingdom of Jordan. And thinking about Martin.

Without Martin

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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.

Raw Narrative

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I wanted to write about something that happened this morning. Then I realized that I had already written the event, in a (maybe) more authentic voice than I would employ for blogging. Let’s call this earlier version the “raw narrative.”

Adrian has been out of town on business since Sunday. (Which leads me to another opportunity to express my unrestrained admiration for single parents, and particular single parents of special-needs children. After a few days of handling Martin’s schedule alone, I’m toast. You amaze me.) When Adrian is traveling, I have a habit of sending him morning and nighttime updates via Blackberry.

Here, unedited except to change the names, is this morning’s update for Adrian:

Good morning, Sweetie! Martin and I are looking forward to having you back. It is drizzling here but so far not too bad.

Sweetie, I started crying this morning, in the street. I was standing with Martin, watching for the school bus to come. He was holding my hand, waiting patiently, not fidgeting, not flopping to the sidewalk or hanging on my arm, and he was making spontaneous sentences about some things he saw (“The fire truck is red,” “The man is running”), and then it hit me that he is getting better, that we’re managing this struggle, that every day I see more and more of the person emerge who our son was meant to be before this god-awful disorder took hold. I looked pretty foolish, I think, crying on _____ Street. But there I was.

In other news, I sent the first brief off at 4:00 a.m. and haven’t received comments yet, so I took advantage of the lull to jog over to the Union Square greenmarket for duck eggs, cow bones, and ostrich filet, to make sure the fridge and freezer are stocked for when my mother is here. My word, what have I become? Also got some of that buttery “Two Guys from Woodbridge” basil that we had last week. Come home so I can feed you.

Kisses.

Let me begin by saying that I’m not usually a crier. At least, not an in-the-street crier. As the penultimate paragraph indicates, I had worked until 4:00 a.m., which left me two hours for sleep before I had to rise at 6:00 a.m., which is the breakfast-and-school-prep time I need when Adrian is away. To that I will add that our senior-advisor cat, Philly, who inexplicably screeches during the night—not to be confused with our junior-advisor cat, Freddie, who pees everywhere—launched his half-hour hyena routine at 5:06 a.m., ultimately leaving me about 86 minutes for sleep. So I was tired, and emotions were heightened.

That disclaimer notwithstanding, the crying was entirely justified. Remember the three crap months we endured from August to November, when Martin’s yeast kicked up again and all the gains we’d made over the summer seemed to disappear? Gone. A memory. Martin is better than ever right now. His eye contact is so consistent that I rarely think about it; I assume that if I say his name, I will see his eyes, for as long as I’m talking. Joint attention is rising again. And Monday afternoon Samara noticed Martin casually taking the initiative to hold a friend’s hand.

We went through three months bad enough that I doubted the entire recovery process, and doubted whether I could endure. I know there may be down times to come, as well. But this day, here, now, I am so glad we’ve hung in there.

I will conclude by advising that I am in no way affiliated with or compensated by the “Two Guys from Woodbridge” company. I really did write that in the email to Adrian, and they really do grow magnificent buttery organic basil.

Adrian

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Adrian and I were getting into bed one night last week when Adrian said, unprompted and unheralded, “He is getting better. He really is.”

Adrian neither prefaced his statement nor provided supporting detail. He did not even specify “Martin.” He just said, “He is getting better. He really is,” and then opened his iPad to read.

End of story.

Airport Fun, Part One: The Bathroom Miracle

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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.

Martin’s Bundle: This Symptom, and Not That Symptom

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After church services this morning, a younger member of the congregation approached me with a question. His psychology class is covering a unit on autism. They’ve learned about autism-related behaviors like not wanting to be touched, making no eye contact, and lacking affection. If Martin has autism, then why is it that, every time this young man sees us, Martin is snuggling on my lap or hugging me or smiling at people he knows?

I gave him the explanation, as far as I understand autism (which, I admit, is not very far). Autism is defined not by a root cause, but by symptoms, and the disorder can encompass myriad symptoms. Not wanting to be touched is one such symptom. So are, for example, taste and texture issues with food, or self-stimulating behaviors arising from sensory overload. A child on the spectrum may exhibit all these symptoms, or any group of them—what I like to call any “bundle” of symptoms.

Martin’s primary symptoms, I explained, are insufficient joint attention—he isn’t always interested in what others around him are doing, even if the others around him are Mommy and Daddy, and they’re pointing to pictures in front of his face—, language delay, inconstant eye contact, and mild self-stimulation.

Does Martin get upset if things are not the same every time he encounters them? the young congregant asked.

He does, in weird ways, I responded. If we drive to Brooklyn, he insists on taking the Brooklyn Bridge. The Manhattan Bridge and Brooklyn-Battery Tunnel upset him. And altering our plans sometimes prompts a tantrum. Adrian and I put a lot of effort into making sure Martin understands our schedule for any given day (or even hour), and that we stick to whatever we describe. Also, when Martin finds himself in an unfamiliar situation, or overwhelmed, he tries to make order with whatever he has at hand; on our trip to South America last week, in the garden of a busy household with cousins scampering left and right, Martin sat beneath a blooming tree, gathered strobiles, and stacked them side-by-side, into a toy speedboat, repeatedly. Order.

Even as I described those symptoms, the after-church conversation reminded me of a topic Adrian and I discuss often, namely, just how lucky we are in terms of Martin’s particular bundle. Martin eats more or less anything I serve him, facilitating his ultra-restricted diet. He wears any fabric. He displays strong affection for me, Adrian, Samara, his babysitters, his grandparents, even our friends and neighbors and extended families. Honestly, I think I would have great difficulty parenting a child who did not demonstrate his love. I am plenty tested by our cats, with their stand-off-ish nature, and that I can chalk up to their not being human. (In the event that you, amazing reader, parent a child who does not reciprocate affection, please add that to the list of many reasons why I salute you.)

The after-church conversation also made me consider this reality: Martin stands out less than he used to. Today, for the first time, he remained in his seat for the entire church service. Eight months ago he would have gone crawling under the chairs, seeking a snug and secure spot. One month ago he would at least have flopped onto the floor, or wandered away. Any person who is acquainted with children must perceive Martin’s language delay, or wonder about his tendency to ignore his name. Of course they must. But more and more I wonder whether the label autism still comes to mind when strangers meet Martin.

I left church today feeling fortunate.

Fortunate based on Martin’s particular “bundle,” and fortunate because we have seen even that bundle begin to splinter.