Developmental Delays

Martin and I are in Texas, visiting my parents. Previous visits here brought Martin unmitigated happiness, as he basked in Grandma and Grandpa’s attention and enjoyed school-free all-day playtime. This trip has been different. Almost as soon as we arrived he became moody and crabby—and asked to go home.

After a few days I realized that Martin has matured, socially. He misses his little friends and interacting with other kids.

I decided to take him to a toddler playgroup sponsored by the church I attend when in Texas.

I didn’t know any of the families attending, so I faced the usual question: What explanation do I give?

I’ve admitted already that I hide Martin’s autism, constantly. My blog is anonymous, and Adrian and I choose not to share Martin’s condition.

The playgroup presented more challenge than usual. We were there specifically to spend time with other toddlers, all of whom were neurotypical (at least as far as I could tell). We were strangers asking to be welcomed. And the differences were bound to show.

What to do, what to do?

Martin, who is about to turn four, was the oldest child there. The next-oldest was a boy almost three, the son of the playgroup’s coordinator. After some brief introductions, I approached that boy’s mother and said:

“Thanks so much for having us. My son has some speech and language delays, so socially, I guess, he is probably right about where your son is.”

That was it.

No hiding, no blaming Martin’s quirks on tiredness, or on speaking Spanish better than English, or on being shy. And no reference to the A-word. I said he has “some speech and language delays” and left it at that.

We spent 90 minutes at the playgroup, and Martin did nothing to indicate that his issues went beyond “some speech and language delays.” He was recalcitrant, to be sure, but neither oblivious to the other kids nor obviously ASD symptomatic. He made eye contact, tried a variety of activities, and spoke to the adults. No tantrums erupted. When I had to leave to visit the restroom, I asked Martin whether he needed to join me. He considered, then responded, “No. I want to stay here.”

Martin’s conduct at the playgroup, along with my choice of introductions, got me pondering a conversation I had weeks ago with his Track Two doctor. The topic was whether the A-word still applies to Martin. Autism, as I understand the condition, is defined by symptoms, not by causes. If a person displays enough of the symptoms, to enough of an extent, then s/he is classified as on the spectrum.

If Martin no longer displays many symptoms, and the ones still present (like repeating words and questions) are infrequent, does he still have autism? Was my statement—“some speech and language delays”—accurate, even if we are still battling the underlying causes of autism?

I don’t know the answer, of course.

But I’m over the moon just to be asking the question.

Crying Under Control. Discipline, Not So Much

When Martin launches a crying fit—usually because he doesn’t want to do whatever we’re about to do, like eat dinner, or put on clothes—I kneel, hold his hands in my left hand, raise my right index finger a few inches from his face, assume a stern expression, and look directly into his eyes, even if he avoids mine.

The desired effect of this is that, after a few seconds, Martin will say, “No crying,” sniffle, and regain control. The method succeeds in about 60% of tantrums.

If sternly raising my finger fails, then I direct Martin to the “crying spot.” At home, the crying spot is one end of our sofa. Anywhere else, the crying spot is wherever I indicate. (“That bench is a crying spot. Do you need to sit in the crying spot?”) Either the threat of the crying stop suffices to stanch the tears, or Martin sits (remarkably, he stays put) until he’s calmed down.

This method has tamed Martin’s tantrums. So yay! Yay for me and Martin.

Then there is discipline, which is a decided boo! Boo for me and Martin.

I have yet to find an effective way to discipline Martin. I use time-outs, of course, and they accomplish nada. (Of course?) Martin perches on the stair landing, our designated time-out spot, until the kitchen timer sounds, then leaps up, yells “Sorry!”, and goes about his business—his business being, often, to repeat whatever behavior just got him in time-out.

Of particular frustration is that Martin still lacks strong ability to read faces and emotions. I have trouble conveying genuine anger to him.

On our latest trip to Chicago, Martin and I pulled into a Whole Foods Market to buy food supplies. (We stay in a hotel “suite,” which offers a kitchenette where I prepare simple meals.) Martin, who was tired, rode in the cart. He asked to hold the ghee I selected.

“Be careful to hold on tight,” I said as I handed him the ghee. “That jar is glass. It will break if it falls.”

Martin needed a few reminders on that point. Nevertheless, we finished shopping and paid without incident. Back at the hotel, I unloaded the groceries onto the counter and informed Martin that we would head to his doctor’s as soon as I went potty.

I was doing just that when I heard a smash from the kitchenette.

Martin materialized in the bathroom doorway, smiling. “It fell,” he said.

What ‘fell’?”

He giggled and scampered away. I finished up and within seconds was yelling—

No! No way. Get away from there. Now!

—as I seized Martin under the arms and yanked his stocking feet from a pile of ghee-slicked glass shards. The evidence was indisputable: Martin had taken the ghee jar from the center of the counter and dropped it onto the tile floor. At the least. More likely still, Martin had thrown the jar.

I was furious. I marched Martin directly to the sofa for a time out. He lolled merrily there whilst I tried to use paper towels gather glass and ghee, and then he accompanied me to the front desk, where I sheepishly requested that our freshly cleaned kitchenette be re-cleaned. He evinced no remorse. To the contrary, notwithstanding my scolding, he appeared downright gleeful.

Readers, if you have suggestions, on how I might get Maritn to understand when he’s in trouble—please, send them.

For my part, I’ll try to keep perspective and focus on Martin’s testing limits, which I understand is a positive and natural developmental stage (unlike, say, misreading emotions). The next day I recounted the ghee incident to a good friend, also mother to a toddler.

My friend laughed at me.

“Well,” she said, “you’re the one who wanted neurotypicality.”

Hi!

Not a very happy post yesterday, “Bad Day. My Bad.” Sorry about that. Indulge me to add that it’s Sunday again, and today has not been much better than what I described in that post, although I’m pleased to report that at least I managed the behaviors more skillfully. I’m noticing a weekend pattern—bad night Friday, drowsy yet agreeable Saturday, killer Sunday—that may be linked to a new therapy we’re doing.

More on that later. This evening, let’s celebrate.

Wednesday this week I strolled a sidewalk with Martin and his friend, en route to a neighborhood playground. Martin’s friend, despite some behavioral issues, is verbally much more advanced than Martin. He and I were engaged in conversation, which momentarily diverted my attention from Martin.

How did Martin use the freedom? He approached a girl stopped on a bicycle and called out “Hi!”

Let’s break that down. Martin observed his surroundings, was aware enough to spot a child, decided to engage that child, and spoke in a clear and appropriate manner. He even paused a bit and waited for a response.

Another first, this whole activity package. Only this one time have I seen Martin, unprompted, initiate such interaction with a stranger.

Perhaps he won’t do so again for months to come.

But he will do so again sometime. And then again. And again and again. And then another novelty will become commonplace, and we’ll be one step closer to typicality.

And the girl stopped on the bicycle? Alas, she did not provide the response Martin had sought. She was older, perhaps seven. She turned up her nose and pedaled away, ignoring Martin’s overture.

I suppose we can’t expect the whole world to join us on our recovery journey.

Sorry for the poor picture quality; I couldn’t resist this mobile-phone photo of Martin “helping” his grandmother with the gardening.

Bad Day. My Bad

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

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

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

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.