Missing Martin, Distressing Martin (?)

Adrian and I are ringing in the New Year in Jerusalem. It should be a great time, and it is a great time. Right now it’s also difficult, because of messages from home. Samara, who has been helping my mother with Martin while we’re away, sent this to my phone (portions translated):

Hi. How are you guys? Everything is fine at the house, but Martin misses you so much. Sometimes when he’s saying, “Mommy is coming back another day,” that’s when a tantrum starts.

Today he cried over a saxophone. He was playing with some stickers his grandma gave him as a present. There were pictures of instruments, and one of them was a saxophone. So he remembered that he has [a saxophone] and started to look for it in his toy chest and took all his toys out of the toy chest. I told him that [the saxophone] isn’t there anymore because it broke, and he started saying, “It’s coming later,” and so mistakenly I said that the saxophone is not coming later, that we need to get a new one at the store because yours is broken. He quickly responded that we should go to the store to buy a saxophone, “Vamos a la tienda a comprar un saxofón.”

I thought that was a very clever sentence. But he was really serious about it. Then he remembered that you aren’t here, either, and he related you to the saxophone and things got worse. He started to cry even more. So I took him to the toy store to look for something similar to the saxophone. Well, he saw a trumpet and got that into his head and didn’t want to think about anything else. I was going to buy it right at that moment, when I realized that I didn’t have my wallet in the backpack and—oh boy! He cried so much. He couldn’t understand that we were coming right back to pay for the trumpet. He cried all the way back to the house and until he saw my wallet, when he finally understood that I was not kidding.

Later he was the happiest boy with his trumpet, and then he got another present from your mother and he was more happy still.

Ugh. Martin has not obsessed about a musical instrument (he used to carry one everywhere) in months. Is emotional distress causing bygone habits to reemerge? Emotional distress because I am not there?

So there was that crap situation, which happened yesterday. Then this morning my mother texted: “Martin has started, ‘Mommy and Daddy always come back.’ [Your brother] leaving will be tough on Martin today.”

I’m craving my little man, craving his presence.

Me siento mal.

More Praise of Friends

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.

Martin: The Only Cause That’s Got Me Doing

I’m kind of a nervous flyer. Whenever I fly, before take-off, I say a prayer along these lines: “I hope we get where we’re going. If we don’t, I trust that I’ll end up someplace even better. I trust that we’ll all end up someplace even better. But still I hope we fly safely, and I hope that the safe conveyance reminds me that life is limited and I ought to use it well.”

Tuesday night on the plane to Israel, I started to say that prayer, and I had an epiphany:

I don’t, at this moment, have fears for myself. I have fears only for Martin.

That’s not to say that I don’t worry about dying. Or, you know, a horrible disease or coma-inducing accident, or terrorist attack, home intruder, flesh-eating bacteria, mountain-lion bites, impalement. The usual.

I do worry about all those things. But my fears for myself have taken a backseat. A distant backseat. Way back, like at the swaying end of a double-length bus. As I recited my pre-take-off prayer last night, I had a feeling like, “If it’s my time to go, it’s my time.

But who will take care of Martin?

Martin is the only grandchild of my mother and stepfather. I know they would step in without hesitation and continue his biomedical recovery. And they’re not alone. My father, my siblings, my parents-in-law, my brother- and sisters-in-law. Any one of them, or all of them. They’d have a lot to learn, but they’d do it.

Then again, deep-down I wonder: How could anyone do what Adrian and I are doing for Martin? More accurately—and I’ve admitted: I’m a control-freak—: How could anyone do it to my exact specifications? The countless pills and liquids, the fifteen HANDLE exercises daily, the RDI, the Track Two doctor visits across the country. The faith and determination.

If something happened to me, would Martin still be able to reach his potential for recovery?

That’s it, then. In my whole life right now, the thing that matters most (maybe the only thing that matters?) is my son’s recovery. My pre-flight prayer now is simply that I stick around to see it through.

To own the truth, I’ve long been a person with a cause. Usually the cause involves animals, like ending the carriage-horse industry, regulating backyard breeding operations, or banning battery cages. But I’ve never been a person who took enough action for her cause. I give money. I speak out when asked. I hope and wish. I don’t do.

At least, not until now. My cause now is Martin, and I’m doing. Damn it, I’m doing.

Okay. The object is my son, and therefore this particular cause is just one step removed from pure selfishness. Moreover, it can (I trust) be accomplished entirely. I can recover my son. I can make him indistinguishable from his neurotypical peers. That fact alone separates Martin’s recovery from, say, world peace, or eradicating poverty and disease.

Still, it’s a cause, and for the first time ever, truly I’m stepping up.

Once Martin is recovered, what’s next? I have a sense that this episode could herald a new chapter in my life, one of doing instead of hoping and wishing. Maybe my cause will be promoting biomedical recovery, or defending practitioners like Dr. Usman who devote themselves to recovering children. Maybe I will stick to animal welfare, with the new perspective of having felt compelled to feed my son meat as part of his recovery.

Some years ago, when I was considering a career change, a friend told me to remember that a life is many decades long, meaning that what seems earth-shattering at one moment may in time reveal itself as only a bump in the road.

Not to be fatalistic (just contemplative), I’ve had four decades already. If I can recover my son, I will consider them well-used—even if, in time, this journey comes to seem only a bump in the road.

As for Martin, our efforts now will give him many decades in which to do whatever he wants, free from the grasp of autism.

Your blogger, hiking to the ruins at Avdat, southern Israel.

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.

Raw Narrative

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

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

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.