Bad Day. My Bad

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Last Sunday—a week ago now; perhaps the trauma has kept me from posting this confession?—was a bad day for me and Martin. The fault was mine.

Looking back, I suppose the stage was set on Saturday.

No, wait. It was Friday. The bad day that was last Sunday actually began on Friday.

Samara put Martin to bed Friday evening, 7:00 pm, without incident. Adrian was traveling, and I was dining with friends who’ve recently relocated to New York. I’ll call them, à la Martin, “Uncle Donny” and “Uncle Brian.”

I arrived home around 11:00 pm Friday, hoping for a good night’s sleep. With Adrian out of town, I’d made plans for a day trip on Saturday; Uncle Donny and Uncle Brian were to accompany me and Martin to Stuart Family Farms and then to lunch in Connecticut. At midnight I snuck into Martin’s room for a detox therapy, managed it without waking him, and dozed off in my bed.

I slept a pleasant hour before the night tanked. Martin woke at 1:40 am and could not close his eyes again until 6:00 am. At 8:00 am I did detox therapy again, almost hoping to wake him. We had planned to leave at 9:00 am for Connecticut; that hour passed with only snores from Martin. I decided to pack a breakfast and most of Martin’s morning supplement routine in a to-go cooler, along with the lunch I’d assembled Friday. At 9:30 I called Uncle Brian and declared that, come hell or high water, Martin and I would be on the road in 20 minutes. Then I woke and dressed Martin, pushed the most crucial morning supplements into his mouth, and hustled him to the car.

Would that be the dawn of the worst day ever? Hardly. There’s a pattern I’ve noticed: When Martin has a bad night—and in all honesty, we’ve seen a lot of bad nights lately, more than we used to—the next day does not reflect his sleeplessness. He’ll be drowsy, maybe mellower than usual, but sharp and agreeable.

And so it was on Saturday. Uncle Donny sat next to Martin’s car seat and helped Martin devour the to-go breakfast and supplements, which Martin gamely accepted. En route to Bridgewater Martin chatted; at the farm he delighted in chickens and pretended to water some grass; at the lunchtime diner he played quietly in our booth, then accompanied Uncle Donny to check out the fish tank.

Predictably, though, on the way home he fell asleep for almost an hour. From clapping to singing to insisting we’d soon hit the RFK Bridge (his favorite), nothing would rouse him. And an hour’s nap in the car makes bedtime a nightmare, so that instead of sleeping at 7:00-ish, Martin needed until 9:30 pm to doze off. And a late bedtime invariably prompts an early wake-up, so that instead of achieving his preferred eleven-and-a-half-to-twelve hours, Martin sprang up at 6:30 am, after just nine hours.

And then there’s the fact that, no matter what, Martin’s second day after a sleepless night is worse than the first. Martin didn’t sleep Friday night. Sunday was bound to suck.

We were late for church. Despite being up since 6:30 am, somehow we couldn’t get out the door before 11:00 am. (“Somehow” in this context means, roughly, “Martin refused to eat breakfast, dawdled with his supplements, cried for half an hour, seized dirty silverware from the dishwasher, and complained when I tried to shower.”) Martin threw a minor after-service tantrum when it was time to quit fooling around with the piano, and again when I made him sit on the potty. I didn’t leave the church feeling spiritual. I left feeling exasperated. Possibly murderous.

When our afternoon plan, hanging at the playground with a friend, fell through, I decided to call it quits and head home. I figured Martin could enjoy quiet activities and I could get some housework done.

Therein lay my error. We were home by 1:30 pm. Between our arrival and Martin’s bedtime, 6:30 pm, spanned five hours. Five hours, I soon discovered, is more than adequate time for a three-year-old to suffer extreme cabin fever and then, compounded by his sleeplessness, to morph into a fiend. By evening Martin had dumped toys twelve feet from our second-floor loft space, emptied the cats’ water fountain onto the hardwood floor, opened the valve on our Berkey countertop purifier to flood the kitchen, unfurled half a roll of toilet paper into the toilet, climbed the cat tree, refused to complete even a single HANDLE or RDI exercise, and pitched multiple crying fits.

Amidst this naughtiness Martin was also attacked by autism symptoms, the kind we used to see constantly but that now strike only at tired, stressful moments. He ran back and forth. He lost coordination and eye contact. He repeated my words, if they provoked any response at all.

I found myself—and this is not easy to admit—in the most deplorable parental state I know: counting the minutes until Martin’s bedtime, and annoyed by behaviors I know he cannot control.

It was not a satisfying day for either of us. Martin was frustrated by boredom and fatigue, and I by my hapless responses to his conduct. I spent the afternoon saying no!, enforcing time-outs, and wanting to ostrich my head.

Martin slept well Sunday night. I planned an after-school activity for Monday, and by Tuesday we were back on track.

But the memory of Sunday haunted me, and so I assembled a list of lessons learned. I must prepare for days when I know sleeplessness will be a problem. Preparation means a plan, and a back-up plan, and a last-ditch plan. If I wouldn’t expect Martin to spend an afternoon doing nothing on a good day, I’m a fool to expect it on a bad day. When I saw his behavior hitting bottom, I should have cut my losses, taken him out of the house, and headed for the nearest playground. Or at least in his stroller for a walk. Maybe for a green juice at the organic restaurant, or any treat. I cannot let my own fatigue ruin a precious afternoon with my son.

The bad day was my bad. I own it. I’m grateful that there’s always tomorrow.

ASD Recovery Recipe: Super-Strict Snack

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For eight weeks, Martin is on an extra-strict diet, as part of a final push against yeast overgrowth. You may ask, How could that possibly be, an extra-strict diet? After all, forget the extra strictness; Martin’s ASD recovery diet includes, well, almost nothing in the first instance.

But it’s true. For these eight weeks (as of today, we’re three weeks in) we’re shaving “almost nothing” down to “really pretty darned close to nothing.” No grains, no quinoa, no honey or raw agave nectar or coconut crystals, no winter squash or sweet potato, no sauerkraut or other fermented foods, no once-a-week pear. Martin is subsisting on dark green vegetables, cauliflower, summer squash, lemons, ginger, turmeric, nuts, seeds, eggs (not chicken eggs), and meat.

Martin’s school asks that I send cookies/treats with him each day, as the children often receive snacks for positive reinforcement. I tried a couple recipes for unsweetened hazelnut cookies, which flopped—returned home in Martin’s steel snack container, crumbled and sad, accompanied by a teacher’s note that Martin just didn’t like them.

The recipes thus proven fruitless, I was left to sally forth alone in pursuit of a snack he might enjoy. And soon I hit pay dirt, big time. Martin goes bonkers for these “nutty bars.” (Why must I conjure a cutesy diminutive name for everything from snacks to body parts? No idea.) I’ve tried the nutty bars myself, and they really aren’t bad, unless you consider incredibly fattening to be “bad.”

almond butter, lots
unsweetened cocoa powder
bee pollen
unsweetened coconut flakes
some combination of cacao nibs, sesame seeds, and/or hemp seeds

The almond butter is the base. (Hazelnut butter works well, too, but it tends to be much more expensive.) Mix in enough cocoa powder to give the almond butter a dry consistency, keeping in mind that too much cocoa powder can result in a bitter taste. Then add the combination ingredients and a generous helping of bee pollen and coconut flakes, both of which give the bars a sweet edge without adding sugar. You may find it easiest to use your hands to mix in these final ingredients, in a kneading motion.

Press the mixture into a small glass storage container, cover, and refrigerate. Cut into bars.

Note that these need to be kept cold, or else they can morph into something resembling pudding, which is still tasty but less convenient. I send Martin’s nutty bars to school with a cold brick in the container.

Slow-Motion Childhood

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Autism is not a “blessing.” My son’s illness did not “happen for a reason.” I just don’t see the world that way.

But I do have the wherewithal to extract the positives where I can find them.

I could not have written that last post if I weren’t paying attention. Paying attention to everything, that is. Noticing Martin’s ups. Trying not to dwell on his downs. Celebrating imitation and inference-drawing as if he’d graduated Harvard.

Recovering from autism is like navigating childhood in slow motion. Martin achieves only gradually skills that neurotypical kids acquire in a flash and as a matter of course. My only child is on the spectrum, so I don’t know this for sure, but—I suspect that parents of neurotypicals may overlook tiny changes when they occur. They probably don’t keep calendars to mark when their children first pucker and blow bubbles.

Adrian and I see every momentum shift.

And years from now, when Martin is a surly teenager who rejects us in favor of his friends, we’ll be able to celebrate the event as our own special victory.

How many parents can say that?

Something Is Different

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Sorry that this post comes so late. I started writing it ten days ago, then got delayed because Martin has been home sick from school. (A common childhood virus got him—for a change, nothing to worry about.) I return now to the blog with an enthusiastic update:

We’re in one of those “something is different” times, when Martin seems to be achieving some new skill every day.

I love the “something is different” times.

Here are some participants in the ongoing parade of firsts:

Blowing bubbles. After more than a year of trying—grabbing the bubble wand and sticking it in his mouth, yelling “phew!” but barely aspirating, and so forth—Martin has mastered the art of blowing soap bubbles. Doesn’t sound like much? A year ago Martin couldn’t pucker; his “kisses” consisted of bumping his wide-open mouth into my cheek. As of last week, he’s combining a solid pucker, ocular focus, and breath control in one task. He even unscrews the bubble container top and holds the wand himself, steady. This is huge.

Stepping off the escalator. This relates to our old foe, proprioceptive awareness. As City denizens, we’re on escalators constantly, most often in subway stations. The end of an escalator used to involve me yelling, “Okay, Martin! Now! Now! Step now!”, then holding him up by the arm when he inevitably stumbled. I’m down to chanting softly, “And. Here. We. Go!” as Martin lifts his foot and we step off together.

Imitating. Martin’s imitation skills are in full swing. We traveled recently, for a visit to Martin’s doctor. Martin likes to flush the toilet in the airport bathroom, and until now he did so with his hand. This time, at LaGuardia, I watched him trying to hoist his little leg high enough to flush with his foot, just like Mommy does. I hadn’t told him to use his foot; he was just imitating what he’d seen me do. Later, as we waited for our ride home (“Adrian”), Martin picked up a pay phone and asked, “Hello? Hello?”

Imagining/associating. For a while now, Martin has been creating a musical instrument out of anything he can get his hands on. “I’m playing the suitcase like a bass!” “I’m playing my shoelace like a flute!” “I’m playing George’s tail like a saxophone!” (May God bless George the cat.) Even an actual musical instrument can have multiple functions; a toy piano turned sideways is an accordian, and a guitar under the chin makes a violin. Now he’s categorizing less and free-associating more. In the doctor’s office was an air purifier, about 18 inches tall, which blows air through an angled top. Martin tried to sit his behind onto the angled top and said, “I’m using the tushy-dryer!” He also told me, when he saw some rain, that the clouds were “going potty.”

Finding humor. Once upon a time, Martin was upset by anything unexpected. Last week he flipped open the top of his drinking Thermos. Because I had mixed “naturally effervescent” kombucha with the filtered water inside, the beverage rushed up the pop-up straw and squirted Martin’s face. Startled, he looked at me for my reaction. (That’s an achievement in itself.) I laughed; I couldn’t help myself. To my surprise, Martin started laughing, too. Later, on the airplane when we were traveling, Martin asked for an ice cube from the club soda I was drinking. (That’s a no-no for Martin, of course; who knows what kind of water is in an airplane ice cube, which was floating in my aluminum-canned drink. Ugh, and double-ugh. But we live in the real world, and do the best we can with what’s on hand, so he got an ice cube.) I tried to deposit the ice cube into Martin’s mouth but missed and somehow rubbed melting ice all over his face. No tears. More laughter. I capitalized on the ice-cube moment and reminded Martin, “Remember when the kombucha squirted you? Squirt!” The kombucha memory kept the giggles coming. We two managed to crack ourselves up for a good five minutes.

Drawing inferences. Because his babysitters are taking summer classes of their own, I’ve been picking Martin up at school more often. In the lobby of his school last week he watched me read his teacher-correspondence notebook and peek inside his lunch container. He said, “I ate all my lunch.” Which means: He got it. Martin inferred that I was opening the lunch container to check for leftovers, he recalled his own lunchtime performance, and he provided me relevant information.

Expressing emotion. This is just, just starting to happen. Martin talks a lot about falling in a pool, which refers to an event that occurred some months ago at my parents’ home. I’ve heard the story a million times, but last week Martin added a new detail: “When I fell in the pool, I was scared.” Two weeks ago Martin visited Adrian’s office. He ran from conference room to conference room, peering through windows at the tops of skyscrapers, then declared, “I am happy.” Finally, we had a guest musician at church, who played guitar and sang an original song. Martin told me afterwards, “I liked the guitar player at church.” These were the first times I’ve heard Martin make original expressions of emotion.

Yes, something is different. And I am happy.

Martin takes in the City.

Spoiled Husband

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Last weekend we braved the Memorial Day congestion and traveled to my hometown, where we met my father for Sunday breakfast at an IHOP. (City dwellers, wandering in the wilderness, end up at IHOPs, apparently.) Adrian searched the menu for a healthy option, and settled on a spinach-and-mushroom omelet with Swiss cheese and hollandaise sauce—which he requested without the Swiss cheese or hollandaise sauce.

“I don’t know about these eggs,” Adrian said after a few bites. “They don’t taste like the ones you get.”

“You mean the IHOP didn’t go into Amish country to procure free-range green eggs with feathers still stuck to them?” I asked. “No, probably not.”

“And there’s something different about the oil. It’s heavy.”

“When I cook your omelets at home I spritz the pan with organic avocado oil, cold-pressed and unrefined. Most likely it’s not in use here.”

Adrian put down his fork. “Well, I don’t like it. The whole things tastes fried.”

My husband, food snob?

I admit that Adrian’s always been a wine snob; seven years ago he insisted that our wedding guests be served only bottles from two South American vineyards he selected. Nonetheless, I remember a time when he took a cheddar-tuna melt on white bread for culinary triumph. How did we move from there to a palate that distinguishes egg quality on first sample?

Martin, of course. Because of Martin’s needs our kitchen has been stripped of artificial ingredients and stocked with farm-fresh produce and other organics. It’s made us healthier as a family, and apparently Adrian’s got used to tasting quality.

If Adrian’s recent IHOP experience is indicative, a taste for quality might keep us all healthier even after Martin’s special diet ends.

Mommy, Gone Missing

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I’m back from Germany, as of late Wednesday evening.

Just in time to (1) watch the Rangers blow their series against the Devils, shattering dreams of repeating 1994’s Stanley Cup run; (2) get caught, twice, sans umbrella in the thunder and splattering rainstorms passing through New York; (3) waste an afternoon at the Apple Store “Genius Bar” attempting to rectify a software glitch; and (4) spend a pretty decent day with Martin.

He had yesterday off from school, so we made a day of doing exercises and running some errands.

After breakfast—leftover green pudding, which Martin practiced scooping and eating by himself—and HANDLE exercises, we headed out to the Union Square Greenmarket for meat and duck eggs. The trip presented an RDI opportunity: Martin and I discussed which subways we could take, and where we would transfer, and how we would board either the 4 train or the 5 train. (Like many ASD kids in New York City (I’ve discovered, from talking with other parents from his school), Martin memorizes train lines and insists we take a particular train, even if another hits the same stations.) He did swimmingly. On one train he opted to stand and hold a pole, and he kept balance as the car braked and rattled and jerked from station to station. My little straphanger.

At the Greenmarket he was calm, enough, as we visited the farmers I know. He willingly held my hand while walking, and stayed close when I needed both hands for my wallet and insulated food bag. Only when he spotted the Union Square playground did he get fussy and impatient. I bargained another five minutes’ shopping time (“…and then we’ll go to the playground…”), and we hit the playground.

The playground, where we had one of our little miracles.

The playground experience with Martin has evolved. A year ago the process was exhausting; Martin had so little environmental awareness that I had to scamper to position myself below him constantly, in case he failed to realize that the jungle-gym or bridge was ending and launched himself off the end. Sometime during summer 2011 we moved to a new level, wherein I could sit on a bench and watch Martin from afar. Still, I could not let him from my line of sight, insofar as he rarely kept track of me and might wander away.

That’s where I was yesterday—observing Martin from afar—when I saw him glance around (searching for me!); realize he didn’t know where I was; whimper, “Mommy! Mommy!”; and then become agitated when he couldn’t find me.

That’s right. My ASD son, who once upon time bolted every time I released his hand, got upset because he couldn’t see me.

I called, “Martin! Martin! I’m here!”, and waved until we made eye contact.

He smiled. I cried a little.

Soon after that, we left the playground, stopped at the bank, took the subway home, ate lunch, then went back out for organic green juice and to purchase a gift at Jacques Torres. Pretty routine stuff, except when you consider that, when you have a kid on the spectrum, everyone else’s “routine” is a victory.

And there it is. What I saw yesterday for the first time will soon be routine. Martin will keep tabs on me. Not quite like I keep tabs on him, but something more like a preschooler should do.

After all, we’re a team. Martin and I.

I Have None

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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.

Eating Bon-Bons and Watching Oprah

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I am at a conference, the annual meeting of a church governing body I serve as a volunteer. At lunch I sat next to a minister I’d never met, the pastor of a Brooklyn church. We engaged in the idle chatter of New Yorkers. Is Brooklyn part of Long Island? Will the new Barclays Center arena be large enough for the Islanders to consider playing hockey there? Do Upstaters despise City arrogance?

Soon the pastor asked, “So, what do you do?”

“I’m a full-time mom.”

“How many kids do you have?”

“Just one. He’s three years old.”

“Just one? Time for more kids!”

You can guess how I wished to reply. Something along these lines:

“Actually, my son has autism, and we’re trying to recover him, which means that I need to plan and execute eight million RDI and HANDLE exercises, and he can’t eat food with preservatives, or pesticides, or sugar, or starch, or soy, or gluten, or casein, or pretty much anything, so I need six or seven hours a day just to plan, shop for, and cook his meals, and then there’s juggling doctor appointments and administering supplements and making sure we never run out of those supplements, which barely leaves time for finding a special-needs kindergarten, researching new treatments, converting a modern home to organic and chemical-free, and snuggling my son. Usually I do all that on six hours’ sleep, or less. Also, I have a husband, and I like him, and occasionally I want to spend time with him. So, no. No time for more kids.”

Instead, I replied, “We’re pretty happy with just one. He keeps me busy.”

I felt (imagined?) the pastor’s disapproval with that response. I’ve felt it before, from others who don’t know about Martin’s condition or the journey we’re taking. And I understand. They must wonder: With one child who spends six hours a day in school, what do I do with myself?

I shudder to wonder what the disapprovers would think if they knew, in addition, that I have babysitters to help several afternoons per week.

I joke with Adrian about my schedule, about how I spend my day. When he calls from his office, he usually asks, “What are you doing?”

To which I invariably reply, “I’m eating bon-bons and watching Oprah. Why? What are you doing?”

I think I might have got the bon-bons-and-Oprah shtick from Peggy Bundy on Married . . . with Children. (Peggy probably meant it, though.) Now it’s become my and Adrian’s routine to recognize that I’m much busier than I ever was even as a full-time lawyer.

I suppose I could have employed that routine on the pastor at lunch: “I don’t have time for more kids, because I spend it eating bon-bons and watching Oprah.”

Then again, he might have been suspicious. A few weeks ago, Adrian’s secretary asked me, “You know the Oprah show went off the air, right?”

I’d had no idea about that. Is that true?

In any event, since Adrian’s secretary broke the news, I’ve been eating bon-bons and watching a lot of Ellen.”

The Ineffable

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Sleeplessness visited Martin again last night, the third time in a week. He was up from 1:00 until 4:30 am.

I’m tired.

Yet I’m not freaking out. To the contrary, I sense that Martin is doing well, that he’s back on the upswing.

I “sense” that he’s back on the upswing. That’s my way of saying I can point to nothing major. Martin has not ceased all echolalia, or started maintaining extended eye contact, or become graceful. In some respects, major signs point downward. Sleeping, for example. I can’t pretend that’s going well. Or keeping things out of his mouth. Objects are still finding his way into Martin’s mouth at an alarming rate. Fingers. Shoelaces. Lotion bottles. George the cat’s ears.

On the other hand, dozens of micro-signs point to improvement. I’ve witnessed the following:

•      Martin ran from the parking lot next to our building to his school bus without turning his head from side-to-side. I cannot remember seeing him run an extended distance looking straight ahead.

•      Martin was tired, so I let him ride to the store in his stroller instead of walking. We stopped at the organic restaurant for green juice. Martin climbed purposefully out of the stroller and mounted the stairs to the restaurant without pause. No dawdling, no tripping, no fussing. He looked like a neurotypical preschooler.

•      Adrian has been traveling this week. Out of the blue, not immediately related to any discussion of Adrian, Martin said, “I want Daddy to come home.” He was not repeating. He was expressing a wish about an absent person.

•      Two weeks ago we visited Martin’s friend Walter at his apartment. Martin observed that Walter still sits in a booster chair. Martin, who for months has ignored his own booster chair, has decided to imitate Walter. Now he’s sitting every home meal in the old booster chair. (He also runs and jumps in every available rain puddle. Thanks, Walter.)

•      Martin has taught himself to buckle the T-formation “seat belt” on that booster chair. That’s initiative and manual dexterity.

These types of developments can be easy to miss. Indeed, they’re nearly ineffable. But they add up.

They add up to a sense that I need not freak out.

4:25 a.m.

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Just in case anyone thinks our life with ASD recovery has got too easy nowadays, I’ll reveal that I’ve been up with Martin for four hours now (I slept for less than 45 minutes before he woke at 12:30 a.m.) and he shows no sign of sleeping anytime soon. These nights are rare; unfortunately, we’ve had two in the last three days, and he always seems to pick the times when Adrian is traveling.

Ah, sleeplessness.