Category Archives: Milestones

Special Guest Author: My Law-School Roommate on Jammin’ With Martin

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Last weekend my law-school roommate, who lives in New Jersey, brought her daughter, Mieko, over to play with Martin. Mieko is five months older than Martin, and the most wonderfully bossy little girl, and one day she’s going to marry Martin. I’m quite confident of this; I’ve been planning the wedding since Martin was born.

(“‘The engagement between them is of a peculiar kind. From their infancy, they have been intended for each other. It was the favourite wish of his mother, as well as hers. While in their cradles, we planned the union . . . .'” Jane Austen, Pride and Prejudice.)

Those far-off nuptials, however, are not the topic du jour. Instead, the day after I dropped my erstwhile roommate and her daughter off at the New Jersey ferry, I received a message through Facebook, which I reprint here, unedited other than the pseudonyms:

It was great seeing you, Adrian, and Martin yesterday.

I wanted to tell you something in the car and didn’t get a chance to. I remember you told me a while ago that Martin could not participate in a kiddie gym class because he was not able to follow what the other kids were doing and would go off and do his own thing. Well, yesterday, I noticed that that was not an issue for Martin anymore. Remember when we were having our jam session? I was on acoustic guitar, Mieko was on electric guitar, you were on tambourine, and Martin was on harmonica. He was definitely aware that we were all playing music together. Not only was he aware that we were having a jam session, but he also noticed a certain someone (Adrian) who was off doing his own thing and was not participating in the group activity! He then proceeded to pull over Adrian to the piano so that everyone was participating together!

What was impressive was that we weren’t all doing the same activity, like everyone hopping on one foot or everyone clapping hands. All of us were each doing something different with different instruments, and yet Martin recognized it as a coordinated activity where each person, doing something different, was together working toward the same goal of creating music. So playing the piano was acceptable to him, but looking at the computer screen was not. I am no expert on child development, but doesn’t that require an awareness of others at a level that three-year-olds don’t always have?

Anyway, the jam session was very fun and very cool!

I take issue with only one part of this message: With twin seven-year-old sons at home, plus Mieko, my roommate by now is an expert on child development. And that makes what she wrote all the better.

A boy and his cat. Martin and George, tuckered out from a hard day of playing with friends.

So Far Gone

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The week before last I posted about what’s disappeared: lethargy, toe-walking, aimless drifting, low muscle tone, sleep problems, clumsiness, and most of Martin’s echolalia. Those are all behaviors that Martin used to have, that he no longer has, and that popped immediately to mind when Adrian and I were discussing treatment costs.

Not long after publishing that post, I was walking home from Martin’s school, pondering his progress, when I remembered “transitioning.” It was a slap-my-own-forehead moment, like, Oh yeah! Transitioning! Until mid-summer 2011, transitioning—i.e., the ability to stop an activity and begin another—had been one of our biggest concerns. Martin’s teachers at his old school mentioned it constantly; moving from the gym back to the classroom prompted a tantrum, as did moving from circle time to table work, or music to snack. We experienced the challenges at home, too. I needed only mention bedtime or going out or a visitor’s arrival in order to upset Martin.

Martin (like most any toddler, I imagine) still has trouble leaving the playground or his best friend’s house. (A five-minute countdown helps. “Martin, in five minutes it’s time to walk home. Five minutes.” Sixty-second pause. “Martin, in four minutes it’s time to walk home. Four minutes.” And so forth.) It’s been months, however, since straightforward change of activity posed problems.

Transitioning is so far gone as an issue that I didn’t even happen upon it when making the case for what we’ve spent on treatment. And I’m not the only one who forgot. “Transitioning?” Adrian asked when I brought it up later. “That’s right. Geez, that was forever ago.”

With a little more consideration, I’ve come up with other issues so far gone that they didn’t make the initial list of what’s disappeared.

Bolting, for example. I can remember a time when I could not pause to greet a neighbor, because Martin would be half a block away within seconds, never once looking back to check his mother’s location. Now, unless he’s really engrossed in a sandbox or something, Martin makes eye contact even from across a playground, keeping tabs on me. Not quite as close tabs as I keep on him, but still.

The inability to sit. I went months without being able to listen to a sermon in church. I was too busy pulling Martin out from under the row in front of us, or chasing him down the aisle, or retrieving him from whoever’s personal space he’d invaded. Last Sunday I heard every word of the sermon, relaxing with my arm around the shoulders of Martin, who was flipping the pages of a book.

Injuring himself. For a time bruises appeared on Martin so constantly that I stopped trying to track their sources. He banged into furniture, fell because he wasn’t watching his step, shook his head so fiercely that he smacked it into walls, tipped chairs over while attempting to arch his back enough to see behind him. Today, if there’s a bruise, there’s an identifiable cause.

Adrian says sometimes that a day will come when this whole chapter will be a distant memory.

I’m working on sharing that dream.

Twenty years from now Martin will be playing U.S. Open tennis, or making his debut at the Met, or accepting a Rhodes Scholarship, and I’ll smack my own forehead and recall, Oh yeah! Autism!

The Tap

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I’m middle-of-the-night posting again, via iPad from a chair in Martin’s room. He’s been up for three hours, since 1:00 a.m. I just fed him hazelnut butter on three-seed crackers (my mother makes these with her sunflour blend), in case he’s hungry, and also had him swallow a charcoal tablet, because he’s goofy and demonstrating detox symptoms.

Past middle-of-the-night posting events have sometimes reeked of aggravation and exhaustion. Not so much tonight. Sure I’m unhappy that I accomplished only 90 minutes’ sleep before Martin busted into our bedroom. Nevertheless, this marks the first bad night we’ve experienced since January 15, and only the second bad night since before the holidays. Because I’m not working anymore, I can deliver Martin to school whenever he wakes and has breakfast, then nap until I need to pick him up.

And there are two more mitigating factors. First, I think I can point to a cause of Martin’s nocturnal festivities: We just finished week two of a six-week herbal protocol designed to drive pathogens from his body, and it’s clearly working. His legs have a rash from secreting what his body does not need, and he is making daily progress in overcoming his ASD symptoms. Second—did I just mention this? —he’s doing really well. He is socializing regularly with his classmates and with a neighborhood friend; almost daily we get a report from his teacher detailing some new achievement; and even language (one of two great weaknesses remaining for Martin, along with joint attention in group settings) shows tiny movements in the right direction.

So instead of describing my aggravation or exhaustion (fascinating topics), I will middle-of-the-the-night post about our latest miracle.

Two nights ago, while Martin was eating dinner, I snuck up behind him and tapped his right shoulder.

Martin, in response, turned to look at me.

Ten minutes later, I tried the same exercise again. And Martin turned to look at me again.

Doesn’t sound monumental? Well, he’s never done it before. I suppose he just didn’t have the body awareness, or the consciousness of others and his surroundings, to sense a shoulder tap and realize that it had meaning. Now, apparently, he does.

I tapped his shoulder again at breakfast yesterday morning. No response. But at dinner tonight, I shifted from right shoulder to left and back again, tap-tap-tapping, and each time Martin craned his little neck to investigate. Good enough for me. Right now I don’t require absolute consistency, just evidence that Martin does possess the ability to engage in these neurotypical behaviors.

At Yale University, I’ve heard, undergraduates are invited to join exclusive secret societies via a “tap.” The chosen few are “tapped.”

I’m uncertain whether that means a literal tap on the shoulder. In any case, the events of these past couple days have made me confident that—should Martin choose to attend Yale, and then be selected for secret-society membership—he’ll be ready to respond to that tap.

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.

Martin’s Shoe

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“I’m not happy with how he’s walking,” Samara said on Monday. She held Martin’s shoe upside down (his foot was absent) and ran her finger along the heel’s exterior tread. “See how it’s more worn here? He’s still landing too much on the outside of his foot when he steps. Shouldn’t his orthotics”—Martin wears custom shoe inserts—“correct that?”

I examined the shoe. I got excited.

“Samara, do you see this?” I asked.

“I do,” she replied. “He’s landing on the outside of his foot.”

“Forget that! Look at the whole shoe.” I pointed to the heel tip, the very end of the sole: “Deeply worn here, tread almost gone.” I pointed to the middle of the sole: “No wear here.” I pointed to the toe, where the tread curved upward: “Lightly worn here. Don’t you get it? That’s exactly the way a shoe gets worn when you walk heel-to-toe. Heel-to-toe, just like you’re supposed to. It got worn like this because Martin doesn’t toe-walk anymore.”

“Hey, that’s right,” Samara said. “He’s had these shoes for a while. It’s been months since any toe-walking.”

My mind jumped to the early days after Martin’s diagnosis, when he drifted on tiptoes despite our pleas for “big-boy walking.”

One more symptom of autism so far behind us that I don’t think about it anymore.

Samara seemed less impressed. “But what about Martin landing on the outside of his foot?” she asked.

“Oh, that.” I flipped over one of Adrian’s shoes and showed Samara the tread, deeply worn along the heel’s exterior. I shrugged. “Martin walks like a penguin, just like his father. There are worse traits to share.”

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.

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.

Quote of the Last 17 Days: Hope

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“Hope is one scary emotion.”

This quote comes not from someone famous—at least, not famous yet—but from my friend Alex. She is ten years younger than I am, trim, fit, beautiful, and because of a muscular affliction, often seated in a wheelchair. At the same time that Adrian and I are fighting to recover Martin, Alex is undergoing a costly experimental therapy aimed at regaining her mobility. “Hope is one scary emotion,” she told me in an e-mail and then continued:

I’ve been thinking a lot about hope lately, and my total fear of that particular feeling. Call me emotionally conservative or a cautious optimist (really cautious), but there is nothing more devastating (down on the floor crying with your coat over your head while you’re alone in the office) than feeling like you’ve put your hope in something that has failed. Imagining that your life can be different and then ending up in the same position that you were in before. I find that more times than not, feeling let down after I’ve dared to hope is what puts me in a near-catatonic state. . . . It’s been a long time since I even thought that I could be fixed.

With those words, Alex was speaking for both of us.

I have a conflicted relationship with hope. When Martin is doing well, hope creeps in, and invariably I wind up disappointed. Invariably, because when I’m hopeful, anything not perfect feels like a nasty, swollen raincloud hovering over my picnic table.

Take yesterday, for example. At the breakfast table Martin was drinking his apple-cider-vinegar beverage, and I noticed that he held the stainless-steel straw in the middle of his mouth, his little lips puckered around it. A big deal? A huge deal. Through his HANDLE therapy we’ve realized that Martin has midline issues. He does not like to reach his left hand to his right side, or vice-versa; he turns his head to watch action from the corner of his eyes; and he clenches straws with his molars, dangling them from the edge of his mouth. For months I have maneuvered his straw to his mouth’s middle and held it there while he slurped. Each time I released the straw, his tongue kicked it back to the molars.

Now here he was, unprompted, unassisted, puckering his lips around the straw.

I felt so hopeful. I seized Martin’s notebook—the one we use to communicate with his school—and wrote, “We’ve seen a lot of improvement in Martin lately.” Then I sent him off to the school bus.

I meant, of course, to prompt a similarly upbeat response from Martin’s teacher, something along the lines of, “So have we! He’s concentrating much better.” The moment Martin arrived home from school I pulled the notebook from his backpack and checked. Nothing. His teacher failed to take the bait, and that failure, unreasonably, crushed me. I assumed that she had seen my note, realized its purpose, and made a conscious decision not to respond, because she had observed no recent progress or improvement.

Martin’s teacher does not respond to everything I write in his notebook, especially when I give non-specific information (as opposed to, say, “Please note that Martin will be absent tomorrow for a doctor appointment”). Nor does she generally address his progress in the notebook; for that, we hold frequent in-person conferences. I can only imagine, also, that the daily grind in a classroom of special-needs pre-schoolers allows limited time for musing extensively, in writing, on “improvement.”

None of that mattered when I saw the empty notebook page yesterday. I had spent the day feeling hopeful, and my hope is so fragile that it just waits to be shattered.

So for the most part, I try to avoid hope. When I sense hope fluttering through my chest, I try to diminish it, by focusing on Martin’s shortcomings and areas without recent improvement.

And therein lies the conflict. I dodge hope because it invites an unbearable parade of emotional highs and lows. On the other hand, I can’t continue this path without hope in Martin’s recovery. Hope is sustenance, even if I partake only when Martin’s progress is undeniable.

Today, unlike yesterday, and even though that straw again was in the middle of Martin’s mouth at breakfast, I will not allow myself to feel hopeful about Martin’s recovery in any present or immediate sense. Instead, I will hope for my friend Alex, and allow her to hope for us.

When hope becomes an enemy, at least we have our friends.

Interactive Play. Interactive Play That I Didn’t See

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I did not witness the event described herein. Samara did. And I was so excited that, when she finished telling me, I made her narrate the entire tale, again, to my mother and Adrian, via speaker-phone. The hearsay version follows—

The setting was a 67-degree New York City afternoon, yesterday. Samara took Martin—he was exhausted from the overnight flight home, yet alert and adventurous—to play at a park with a substantial sandbox. Martin managed to get hold of the only on-site bucket and shovel. He had filled the bucket with sand and was using the shovel to scoop it out when another boy, perhaps four years old, approached and wanted the bucket.

Martin’s usual response to such a situation has been to abandon the toy to the child who demands it, and perhaps to start crying. Yesterday, instead, Martin engaged in some sort of wordless negotiation with the older boy, which resulted in the two of them sitting down, the bucket between them. The older boy cupped his hands to dump sand into the bucket; Martin used the shovel to scoop it out the other side. According to Samara, the two preschoolers cooperated this way for some ten minutes.

Non-verbal communication.

Interactive play.

Joint attention.

That’s my boy.