Category Archives: Deep Thoughts

Although I try to avoid them (I don’t try too hard), some “big picture” thoughts about autism and this blog are bound to appear. I’ll categorize my deep thoughts here.

Seven Things You Didn’t Know About Me. No, Wait. Most of Them You’ve Probably Guessed

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1.

I wish I could take more credit. Last week I enjoyed a drink with a former work colleague, a mother of three young boys, who does not know that Martin has autism. She and her husband are both lawyers, full-time. (I don’t know how they do it.) She was complaining that none of their kids can fall asleep alone; her husband stays with the older two, while she falls asleep, and usually spends the entire night, in the youngest’s bed. Does Martin fall asleep by himself? she asked. Yes, I responded. I can put him in bed and leave. “You are so lucky!” my former colleague said. She’s right: I am lucky. Still, I wanted to say, “Yes, he falls asleep by himself, but he also has autism, and curing his autism has taken over my life. Would you choose that deal?” I wanted to take credit for doing more than standard mom tasks, especially since my conversation partner works while I don’t, and has three kids to my one. Instead, I let her think I have it easy.

2.

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

3.

I suspect that some of the interventions we do are just so much hocus-pocus.

4.

I am angry that we “did everything right” and Martin still has autism. While I was pregnant with Martin I avoided alcohol, watched my protein and nutrient intake, chose organic foods, refused to get my hair highlighted, had Adrian clean the cats’ litter boxes, exercised without jostling my belly, and got ample rest. (The good old days.) I breastfed Martin for six months exclusively, and 21 months total. We soothed him by the Happiest Baby method, ensured a proper sleep environment, read to him, played with him, coddled him. When I see a parent on the subway, at midnight, unjustifiably yelling at toddlers who are clutching Doritos and Mountain Dew, I think, “Really? You get the neurotypical kids, while mine has autism? That’s fair.” I try to redirect that ugly thought by remembering that, however unfair my lot feels, those sleep-deprived, junk-food-fueled kids have it worse. And thank goodness they don’t have autism added to their burdens. The redirection succeeds, but I can’t deny that the initial thought happens.

5.

I become impatient with Martin over behaviors that I want him to control, even though I know they are symptoms of his ASD and not in any way his “fault.” Skipping. Chewing on a straw in the corner of his mouth. Letting himself fall slack. Taking 20 minutes to manage any task, even to pull up his pants after using the toilet. Worst, I get annoyed when he doesn’t pay attention to what I’m saying, or to what he’s doing, or to what’s going on around him. I know I shouldn’t. I try hard not to. Most of the time I can stop myself. When I can’t, I console myself by remembering that plenty parents of neurotypical four-year-olds lose patience because their children are acting like—four-year-olds.

6.

I have doubts about whether we’ll get there. I have them often.

7.

I love the BeeGees, the Doobie Brothers, Peter Gabriel, and Edith Piaf. That’s not related to Martin’s autism. It’s just kind of quirky.

Wandering? It’s the direction that counts.

Pinpointing

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When people ask me what treatment “helps Martin most,” I shrug and say, “Dunno. Some combination of what we’re doing, I guess.”

We’ve dragged ourselves through a rough couple months lately. Symptomatic, crabby, stagnated months. Regression. Over the last eight days Martin has improved, and I am praying the road is becoming firm again.

I ask myself, and others have asked me, what provoked this latest months-long slog. My first thought is, “Dunno,” followed by, “Viruses seem to be an issue. Also chronic internal inflammation. Unavoidable radio waves. Adrenal stress. Something environmental? The construction happening directly north, east, and south of our apartment right now? Our own bathroom renovations? Parasites, maybe. Or electromagnetic fields. Or an issue at school,” followed by, “Oh, hell. I dunno.”

Nevertheless, I have two recent incidents that either (1) put the lie to unmitigated “I dunnos,” or (2) demonstrate that I retain an active imagination.

Incident One: Evil Metal Detector?

Two weeks ago we traveled to Chicago for doctor appointments. Over the course of the three-day trip Martin’s symptoms ameliorated, somewhat, and by the time we arrived at O’Hare for an evening flight home, he was able to hold my hand and wait in the security line—without dancing, skipping, wresting his little wrist from my grip, wandering away, or staging a meltdown. He was doing well.

When we arrived at the front of the line, I asked the TSA agent on duty whether I could request that my son be hand-searched, or at least scanned with a security wand, instead of walking through the metal detector. He has a neurological condition, I explained, and I prefer not to expose him to the magnetic field.

The agent seemed bemused by my request but responded helpfully. Because they aren’t allowed to touch children under age 12, she said, my request would require calling a supervisor from another part of the airport. Fifteen or 20 minutes might elapse before he arrived. Should she summon him?

I hesitated. We had half an hour until boarding time, but who knows what “15 or 20 minutes” really means, and I still had to clear security myself (Martin’s drops and pills being hand-searched while I argue/bargain with agents, flashing prescriptions for special foods and liquids in larger-than-three-ounce containers), then move Martin a quarter-mile to the gate.

“It’s okay,” I said. “He can pass the metal detector.”

But it was not okay. Immediately after walking though the metal detector, Martin became unmanageable. He refused to sit while I completed the security check, ran away from the security area despite admonishments, and whined nonstop. When we tried walking to the gate, he could not hold my hand or focus enough to progress more than 20 feet without crying. The flight was delayed (and why would it not be, at a moment like that?), so I took Martin to the Admirals’ Club family lounge, where he spent 90 minutes alternately running circles around the room and collapsing on the floor. After half an hour I retreated into my own world, drinking wine and texting friends for support. Quality parenting, I know. I should mention that the family lounge has glass walls, so dozens of business travelers in the next room witnessed our mother-and-son performance, albeit without sound.

Why did Martin’s behavior change so radically when he passed through the metal detector? Did the magnetic field affect him, or was the decline coincidental, triggered instead to the onset of travel exhaustion or some other factor? The Health Physics Society’s webpage on security-screening safety concludes, “[B]ecause of its nonionizing properties, the magnetic field generated in a metal detector will not cause harm to persons even with routine and/or repeated scanning.” A post on the BabyCenter website states, “Anything that generates or uses electricity, such as power lines or household appliances, produces an electromagnetic field. At the low levels a metal detector emits, this exposure is considered safe for everyone, including pregnant women.”

I will never know for sure whether the metal detector provoked Martin’s symptoms that evening. But something happened around the time he passed through. That much I witnessed.

Incident Two: Precarious Home Library?

Some weeks ago a nice fellow from Healthy Dwellings came over and completed a “healthy home evaluation” for our apartment. He spent several hours taking meter readings, testing water, checking air quality, and so forth. The resulting report showed that we’re doing pretty well, in most aspects.

One exception was radio frequency (RF), those electromagnetic waves that send data wirelessly. Ideally, RF levels should hover below 10 mW/m2. The lowest reading in our home—in Martin’s bedroom, thank goodness for small favors—was 137 mW/m2. In our living room, the level was 540 mW/m2, and in the library, the level topped out at a whopping 3,600 mW/m2. Our home library is an alcove set within the rafters (we live on the top floor) with a large skylight absorbing all that New York City has to offer (windows are the most common entry point for external RF waves). Our home library, because it is farthest away from any other apartment, is also where we keep Martin’s drum set.

As averred, Martin’s behavior improved last week. One particularly unsymptomatic afternoon Samara (babysitter) picked Martin up from school and brought him home, where I was cooking. When they arrived I completed several HANDLE exercises with Martin, watched him play with Thomas trains, and discussed with Samara how calm Martin appeared, steady on his feet and content to play alone. Samara agreed.

Martin then declared his intent to play drums and headed upstairs to the library alcove. Samara followed him. I returned to the kitchen. By virtue of an open floor plan, the library is visible from our kitchen. That helps me keep an eye on Martin and, in this instance, let me observe that, within five minutes of his going upstairs, Martin transformed into a different kid: running back and forth, flailing his limbs, unfocused. I called for Martin and Samara to come back downstairs.

It was another metal-detector moment. What caused Martin’s behavior to change from “with it” to “restless and in his own world”? Part of me wants to blame the library and its RF hurricane—because RF levels, at least to some degree, are fixable. Part of me thinks that I’m blaming the RF levels because I just discovered they are high in the library, and I’m prone to grabbing hold of any factor I can blame when Martin tanks. All of me admits, “I dunno.”

Pinpointing

These incidents raise a few possibilities.

First, I may actually have pinpointed some factors that affect Martin more than others. Brain-scrambling magnetic fields and RF waves!

Second, I may have seen connections that, in reality, don’t exist, and I may therefore explore yet more dead-end routes, like refusing to let Martin through metal detectors or blocking RF waves.

Third, the truth lies in some combination.

Doesn’t it always?

Hard Truths

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Where have I been, these two months?

Let’s talk hard truths.

I’ve been dealing with Martin, who’s been nowhere near where I’ve wanted him.

Over this summer, something went awry, and his progress hit a plateau. I did not see significant improvement.

Honestly, I don’t really recall seeing any improvement. We had some firsts, like supermarket walking and approaching a stranger. At the end of July, a friend sent me an email stating that her husband, upon interacting with Martin for the first time in several months, “thought he seemed great—real improvement since last time!” But the jagged ascent to which I’ve become accustomed—progress, little setback, progress, little setback—evaporated. At times the summer felt more like uneven descent: no progress, little setback, no progress, little setback.

Finding My Kid is “a parent’s real-time blog of autism recovery.” It’s hard to post reports when no recovery is evident. It really is. It’s even harder when the author descends into hopelessness, into questioning whether she’s abandoned her career, her church work and activism, and large chunks of her social life in pursuit of a goal that never will be reached.

Then, two weeks ago, Martin tanked. I mean, tanked. One day I felt like, though progress had leveled off, at least I had a child without perceptible autism, and the next day I had a child with myriad classic signs of the disorder. In our apartment Martin ran compulsively to and fro, chanting “d-d-d-d-d-dah, d-d-d-d-d-dah.” He lost eye contact and name responsiveness. He threw tantrums when not allowed to watch one video repeatedly. Echolalia resurfaced. It was as if a year of progress disappeared overnight.

I consulted with his doctors and therapists. The prognosis was unanimous: stress. Adrenal stress, systemic stress from doing too much. Martin’s delicate system cannot keep up with the amount of detoxification we’re imposing.

We pulled back immediately. I took him off almost every agent meant for detoxification, whether heavy metals, parasites, viruses, or otherwise, and I kept him on only supplements and agents meant to support his adrenals.

With those changes, Martin shows signs of improving again. The repetitive behaviors, though still present, are diminishing. He’s making eye contact, albeit unsustained. Adrian and I are subjected to near-constant whining (hey, Martin is a four-year-old, after all) but fewer tantrums. I’m not going to say Martin’s recovery is back on track. I’m not even going to say we are where we were a month ago, when I already was unhappy with his progress.

I will say that, I hope, the ship is turning again.

So why recommence blogging now?

Because I have no excuse not to. Finding My Kid comes with an honesty pledge. Posting reports only when recovery is proceeding apace—well, that’s just not honest.

See you soon.

[Addendum: If you’re taking the time to read Finding My Kid, you probably already saw the piece in this morning’s New York Times about the the links between autism and immune disorders. I’m always happy when the mainstream press edges toward acknowledging that autism is medical and should be treated as such.]

Developmental Delays

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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

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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.”

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.

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?

I Have None

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2

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.

Failure to Grieve

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6

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.

Tanked. Temporarily.

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We’re tanked.

This past week Martin has displayed long-forgotten symptoms: clumsiness, running circles around our apartment, low name responsiveness, even some toe-walking. Toe walking! What’s up with that? His attention has gone MIA, and his daytime sleepiness makes me suspect nighttime restlessness. He is inserting into his mouth anything he can get his hands on. And when he can’t get his hands on anything, he simply inserts his hand.

Times like this used to trigger hopelessness in me. All this work, I would think, and we’ve gone nowhere?

I’m more sanguine these days. So we’re tanked—big deal. Paradoxically, Martin’s language has been stronger than ever, notwithstanding the symptomatic behavior. As to that behavior, maybe the blame lies with the onslaught of pollens and other allergens our early spring has brought. Or else residual dust or cement particulates from our recent mini-renovation (we had some work done in the apartment when I took Martin to visit his grandparents over spring break) could be bothering Martin. Most likely, we need to tweak something in his supplementation protocol.

Whatever it is, we’ll figure it out. I know that we’re tanked only temporarily. I’ve seen what Martin can do and know we’ll get back there, and beyond.

Of course, feeling calm overall, on a general basis, does not translate into rationality every minute. This weekend Martin and I were riding a carousel, on horses side-by-side, when I caught him arching his back and stretching his neck to look at the ceiling and even behind him. That’s a sensory stimulant, one that’s been gone more than a year; it used to be hard to take Martin to restaurants, because he would throw his head back so far from the highchair that he blocked aisles, and I fretted about decapitation by waiter or bathroom-bound patron.

On the carousel I was alarmed and disheartened to see the behavior reemerge.

“Martin,” I said, “sit up like a big boy. No throwing your head back.”

Martin complied and straightened his back, but 10 seconds later he leaned back, hands clutching the horse’s pole, and gazed upward.

“Martin, please. Sit up like a big boy.”

Martin complied again, then said, “There are flowers up there.”

“What?” I asked. “Where?”

“Right there!” He threw back his head and pointing to the carousel’s ceiling.

I looked and saw what had caught his eye: lovely flowers hand-stenciled above us.

False alarm. No sensory stimulation. Just Martin appreciating the world around him.

“Martin, those flowers are lovely.”

Adrian helps Martin with his balance on a weekend stroll.