Monthly Archives: May 2012

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.

Potty Sayer

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“I need to sit on the potty,” Martin said.

This was Saturday afternoon. We were just spreading our picnic blanket on a stony beach at Montauk Point State Park, at least a quarter-mile of precarious terrain from the nearest restroom—and we know from past experience that Martin would rather have a potty accident than pee outside.

So if we were the parents of a neurotypical almost-four-year-old, we might have dreaded the words. But we aren’t, and we didn’t. Instead, I told Adrian, “I got this one,” grabbed Martin, and headed around the bluff toward the lighthouse restrooms, scuttling as swiftly as I could over a pile of rocks with a 45-pound preschooler in my arms. I spoke into Martin’s ear: “No pee pees yet! Hold them in. You can make it. Wait for the potty. No pee pees in your pants.” Martin, in return, poked his fingers into my nose and giggled.

We arrived at the restroom to find a line waiting. I raised my voice from a private whisper to a stage whisper—“Hang in there, buddy. Hold it in till we get to the potty”—hoping one of the queued women might take the hint and offer us her place. None did. We waited another several minutes.

Finally I lifted Martin onto a toilet seat, where he deposited his peepees into the bowl and then said, “I’m all done.”

Martin has been potty-trained, more or less, for several months now, with two exceptions. First, he still wears an overnight diaper to bed. That’s for security purposes; most mornings the diaper is dry when Martin wakes. Second, Martin has had trouble learning to tell us when he needs to go. Instead, he says something like, “I’m doing peepees,” or, “I need new pants,” three seconds too late. Up until now we’ve just been sitting him on the potty as often as possible, and he’s done his part by, usually, holding his business until a potty break.

So you may imagine our joy those occasions when Martin not only recognizes in advance that he needs to go but also thinks to inform us. That happened five times this weekend: once at the beach, twice at church, once at home, and—the biggest victory—once in the car, when we were stuck in Sunday-afternoon City traffic and unable to pull over, whereupon we asked him to please “hold it” until we got home and he did, an entire half-hour.

The round-trip from the Montauk beach to the potty and back again took me and Martin at least 20 minutes, delaying our lunch. No matter. When we returned to the picnic blanket, Martin in the same still-dry pants, no accident, Adrian lifted our big boy into the air and shouted,

“Ha ha! Way to go, Martin!”

Yellow Fingers

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As I see food, fresh is best for Martin. In most cases—cruciferous vegetables being perhaps the exception—raw foods beat cooked foods. I’ll take just-picked greens and just-killed meats, when available, over frozen. Fresh herbs are more beneficial than dried herbs.

So I was excited when my local natural foods store started carrying fresh organic turmeric root. It looks like ginger root, only more yellow-orange inside and less stringy. I bought a hunk yesterday and brought it home to use in Martin’s green pudding in place of turmeric powder.

The green pudding turned out better than ever, slightly sharper tasting, and I was proud of myself for incorporating a new ingredient.

A few hours later I discovered the downside of handling fresh turmeric. Friday night is date night. I was seated with Adrian in a wine bar, out of my mom clothes, feeling elegant in a smartly fitted dress.

Adrian watched me bring the long-stemmed glass to my lips.

“Yessss?” I drawled, seductively (I thought).

“Ummm—why are your fingers yellow?”

I checked. Despite several sound scrubbings, my fingertips and nails still bore the turmeric stain, a shade that is lovely in fresh root but rather jaundiced on flesh.

“Hey,” I said, “did I tell you how great Martin’s pudding turned out today?”

Failure to Grieve

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This week I attended an excellent presentation by Sarah Birnbaum of New York Special Needs Support. The topic was navigating the “Turning Five” process, i.e., getting a child into New York City special education for kindergarten.

It was a tough evening for me, emotionally.

There was a time when I thought that Martin might be ready to join a mainstream classroom as early as kindergarten. (Martin is not yet four years old; he is scheduled to begin kindergarten in autumn 2013.) Although we have made much progress, particularly in healing Martin’s gut and easing atypical movement and behavior, we still have a long way to go in language development and attention. We won’t try to place Martin in any classroom more advanced than his current skill level; because we are committed to lifetime success, we’d rather coddle him for an extra year or two than see him flounder because we shot too high.

So we’re looking at special-education primary schools. And so I related when Sarah said something like (I’m paraphrasing), “You may find it upsetting to visit these schools and fill out applications, because it’s not something you ever envisioned yourself doing, not a place you ever expected your child to be.”

But did I relate in the same way that the other assembled parents did?

I think Sarah meant that it can be hard to accept that your child is not suited for a mainstream classroom. And she is right—perhaps particularly so in the context of parents who do things like attend presentations on kindergarten admissions sixteen months before their children are due to start kindergarten. No one really wants to admit that his or her child has special needs, right?

Therein lies my thought for the day. I’ve read, in multiple sources, that the parent of a child with autism should grieve, i.e., should mourn the loss of the child who was expected, in order to better accept the child who is.

Adrian and I expected a high-achieving child, no doubt about it. From his earliest days, Martin was photographed wearing onesies and caps with the logos of our alma maters. We as parents debated topics like whether to speak to Martin in two languages or three, at what age he should begin music lessons, and whether the risk of concussions meant he should not play hockey. If we had a great fear, it was whether a spot would be available for him at the mainstream private school of our choice.

It’s been two years since we first began to notice signs of autism, and more than eighteen months since the diagnosis. Yet I have not allowed myself to mourn the loss of the child we expected, because I do not believe we’ve lost him. Martin is recovering, however slowly. I refuse to accept that he will face limitations based on autism. I admit that Martin has special needs now, but I do not admit that he’ll have them for long.

I do not grieve.

Nonetheless, as I sat in a presentation on finding the best alternative classroom, I found myself hiding the fact that I wanted to cry, and I wondered:

Can this hope actually make things harder?

My little superstar getting some exercise.

I’ll Have What He’s Having

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Well, this was bound to happen sooner or later.

Sunday afternoon Adrian and Martin sat at our kitchen counter, awaiting their respective lunches.

I served Martin’s plate first: cold chai rooibus tea, Raghoo Farms duck breast, and green beans sautéed in the duck fat. Martin picked up his fork to stab some duck.

Adrian’s plate arrived next: filtered water, one ounce of Hemlock Hill cheddar, “exotic rice toast” with Thai red rice and flaxseeds, pecan halves, and a peeled Satsuma orange divided by sections.

Martin took one look at Adrian’s more colorful meal, set down his fork, and said, “I want that.”

“That’s Daddy’s lunch, Sweetheart,” I said. “Your lunch is over here.”

“I want Daddy’s lunch.”

We’ve witnessed harbingers, over the past few weeks, of Martin’s nascent interest in food other than his own: longing stares at the fruit bowl, requests for “cookie crackers with crunchies” (a/k/a flour-free seed crackers, nut butter, and bee pollen) instead of parsley-tarragon-and-quail-egg frittata.  The signs, however, were few and easily covered by distraction, and Martin’s teacher tells us that he still never reaches for his classmate’s lunches.

Sunday was the first time Martin made a direct request for someone else’s food. I’m happy for the developmental milestone—the interest in what others are doing, and the desire to break routine. But the trend, if it continues, will pose new challenges for me. Up until now, Martin has been satisfied with what I put in front of him, and only that.

As for Sunday, it was mustard to the rescue. Martin is in a mustard phase; anything with mustard becomes instantly more appealing. (This includes delights like mustard on turkey bacon or mustard in buckwheat cereal.) After he requested Daddy’s lunch, I slapped my forehead, exclaimed, “Oh my gosh, I forgot the most important part!”, and made a big show of squirting stone-ground mustard onto the duck breast. This demonstration held Martin’s attention while Adrian quietly picked up his own plate and slipped away to his desk to eat, removing the temptation.

One incident managed.

Many more to come.