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.

Darn You Double-Crossing Cruciferous Vegetables

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Arugula, broccoli, Brussels sprouts, bok choy, cabbage, cauliflower, chard, collard greens, daikon, kale, kohlrabi, mustard greens, radishes, rutabaga, turnips, and watercress.

Cruciferous vegetables are good for you, right? They’re high in fiber. They’re mineral- and vitamin-rich. They contain isothiocyanates, which help the body fight carcinogens. And for purposes of Martin’s specialized diet, they’re not too starchy or sugary.

Slam-dunk.

But nothing in the world of autism is a slam-dunk, really. I’ve been warned against feeding Martin any raw cruciferous vegetables. That may not seem like a big deal. On the other hand, I love dehydrated kale chips, and Martin used to love them, too—an easy, on-the-go snack available without moderation.

Now he doesn’t get them anymore, at least not often. With the familiar caveat that I am neither a scientist nor a doctor (and I give no medical advice), here’s my understanding of why raw cruciferous vegetables can affect ASD: Thyroid functioning is key to brain function and mental health. Many environmental chemicals, including BPA and flame retardants, are endochrine disruptors, which means that they can interfere with thyroid functioning and thereby hinder the developing brain. Cruciferous vegetables, while unquestionably not the same kind of thyroid criminals as those aforementioned synthetic chemicals, naturally contain chemicals known as goitrogenic isothiocyanates, or simply “goitrogens” (think “goiter”). The goitrogens inhibit the body’s metabolism of iodine, which is crucial to the production of thyroid hormone. Decreased hormone production means poor thyroid functioning. Poor thyroid function has been tied to autism.

This video from The Renegade Health Show explains (if you can tolerate big words, and lots of them) the effects of isothiocyanates on thyroid function. Kevin on the video concludes that only iodine-deficient persons, or those with pre-existing thyroid problems, need to worry about raw cruciferous vegetables. (And even those people may be able to counter the effects of the goitrogens by boosting their iodine intake.)

Most commentators seem to agree that cooking cruciferous vegetables, even lightly, inactivates the goitrogenic effects, which is why this concern applies primarily to raw cruciferous veggies.

So should Martin avoid them entirely?

I agree with Renegade Health’s Kevin that raw cruciferous vegetables pose no risks for the majority of the population. More specifically, I agree that they pose no risks for me; I eat buckets of arugula salad, I dip raw cauliflower in hummus, and I’m pretty sure that my life would be a lesser existence without the Dijon-marinated raw kale at Sacred Chow in the Village.

At the same time, whereas ASD and thyroid complications often travel together, allowing Martin to eat raw cruciferous veggies may well be a sort of danger.

I’ve decided to strike a balance. (I like saying that, because it must often seem like I’m willing to go any extremes, whatever the issue.) To ensure that Martin gets ample iodine, even without dietary supplementation per se, I sprinkle kelp flakes on his food in place of salt. Then I’m careful not to allow him unrestricted access to raw cruciferous veggies. Instead, he gets only the two foods he adores most: kale chips and green vegetable juice. I prepare kale chips no more than a couple times per month. As to the green vegetable juice—which in our case comprises organic green leafy vegetables (for goitrogen purposes, spinach is mildly better than kale or cabbage), cucumber, ginger, celery, lemon, and half an apple—it’s really a double no-no, because of the one-half apple. Nevertheless, I let Martin drink up to 12 ounces once per week.

As a side note, I consider dehydrated kale chips raw because they’ve not been heated to more than 115 degrees Fahrenheit, or 46 degrees Celsius. Definitions of “raw,” for purposes of the raw-food movement (which is not the topic of this post), vary. They include insisting that food be unheated and recommending that it not be heated above human body temperature. I’d love to wade into that debate, and more raw foods in general—but I keep returning to my mantra: There are only so many hours in the day.

And of those hours in this day, I’ve probably just given too many to the topic of goitrogens.

Sentences. They Help.

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Yesterday’s post described what is not going right. Yesterday I felt in the dumps (though still sanguine, I promise, sanguine). After some encouraging words from Adrian—“Stop it. Why do you get anxious? He is doing marvelous. Adjust his protocol a little, that’s all. These minor ups and downs don’t bother me.”—I decided to talk more about what remains positive, i.e., Martin’s language.

Martin is assembling original sentences more than ever, articulating his observations and needs and, well, wants.

One morning last week, while Adrian was helping Martin dress, Martin informed me, “I don’t want to go to school. I want to go to the toy store.” After breakfast, when Martin said to me, “You’re going to take me to the school bus,” I replied, “No, Daddy will take you down to the bus. I’m going to stay here,” then braced myself for protest. Martin remained calm and said, “Daddy will take me to the school bus instead.”

“Instead”!

On our way home from his school, Martin and I stopped at our favorite—well, my favorite—organic restaurant for a “mega-green juice” of celery, leafy greens, lemon, ginger, and half an apple. The apple half and raw crucifers make mega-green juice a no-no for Martin, but (ahem!) sometimes I let that slide. The following conversation ensued:

Martin: “I want to hold the juice.”

Me: “You can hold the juice. Can I have a sip first?”

Martin: “No.”

Me: “I can’t have a sip of my own juice?”

Martin: “No. I’m going to drink the juice.”

Then on Sunday night, for out last potty break before sleepytime, Martin picked up a book on ladybugs, which he decided to read while doing his peepees. Never too young to start the bathroom literature, I suppose. I asked him, “Would you also like to read this book before bed?” He said, no, he wanted to read Guess How Much I Love You? before bed. But, he continued, “I want to take the ladybugs book to bed with me.”

“You want to read Guess How Much I Love You? before bed but then go to sleep with the ladybugs book?” I asked.

“Yes,” Martin affirmed, seeming quite confident.

Martin’s ability to express himself made for an upset- and tantrum-free evening. Fifteen minutes later, having enjoyed Guess How Much I Love You? together, I watched Martin doze off, the ladybugs book snuggled under his right arm.

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.

Hiding It

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Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?

Plan B

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My poor blog. I’ve let her whither. Thank you to everyone who left comments or emailed (findingmykid@yahoo.com) to say you missed new posts. It is beyond gratifying, to know my words are being read.

By way of explanation, I few weeks ago I fell ill. Nothing life-threatening; I’m on the mend now, and going to be fine. Nevertheless, I required a blog vacation.

Vacation’s over.

Since I stopped working as a lawyer, back in January, Martin’s recovery has felt like less of a burden.

(I use that word—burden—conscientiously. Martin’s path is a burden, for our whole family. I don’t pretend otherwise, and I know that one day Martin may read these words and regret that his condition burdened us. For Martin I note that all parenthood, by its nature, is a burden. Adrian and I chose that path, we’re glad we did, we would not want any child other than Martin, and the effort that we expend is repaid a thousand-fold every today that Martin manages some feat he couldn’t do yesterday.)

(Cripes, that was sappy. Sorry, Martin.)

The first morning I became sick, I experienced the full burden again. I woke cramped and barely able to stand. I needed half an hour to believe I could do anything more than lie in bed and moan.

In the pre-autism-diagnosis days, I would have asked Adrian to take Martin to the diner for breakfast and leave me alone. In the ASD recovery world, Martin’s breakfast must be made fresh, at home, and his morning supplementation routine takes an hour to complete, and unless I’ve made advance arrangements, I’m the one who must complete those tasks.

So I did. I dragged myself to the kitchen and fried a duck egg in fat with broccoli. I counted pills, measured oils, stirred powders into tea. I alternated standing at the counter, sitting on a stool, crouching on the floor. Finally I scribbled a shopping list and sent Adrian and Martin to Fairway, to buy myself some peace.

That was Saturday. I muddled through until Tuesday, and then wound up in the hospital, whereupon Martin’s nanny Samara interrupted her own life to come take over my home. Together we made it work until I was steady on my feet again.

Here’s the point: I don’t have a Plan B. I am the one who knows Martin’s routine, to a speck. If I am incapacitated, Martin’s recovery stalls until alternative arrangements are made. That’s what feels most challenging these days—being on call every moment, not having emergency time-off. It makes me realize that I’ve really got to take care of myself, if I’m going to take care of Martin.

Okay. I got the kvetching out of my system. Lest my readers think I’ve returned to blogging only to complain, let me end with the following three points:

1. Lacking a Plan B is no more than what most single parents face, day-in and day-out, whether their children are neurotypical or not. Moreover, many families lack the resources to have a functioning Plan A in place. In so many ways, I am blessed.

2. I’ve returned to blogging! Taking a month off, and receiving so many comments and emails during that time, makes me realize just how therapeutic this writing process has become.

3. Last week Martin and I were having breakfast. Adrian had finished his breakfast and gone to prepare for work. Unprompted, Martin addressed me and remarked, “I hear Daddy blowing his nose upstairs.” Martin expressed neither a need nor a want; he formulated (perfectly) that sentence solely for the purpose of sharing an observation with me. At that moment I needed no break, no Plan B, no time off. Plan A is working. That will do.

Happy to be back.

Update on Update on Questions

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Remember last week’s update on questions? Specifically, my update on the fact that Martin doesn’t yet ask questions?

Time for an update on the update on questions. Martin has added to his repertoire three new requests for information.

The first two are rote questions. When we’re on the subway and stop at any station he doesn’t recognize, he says, “What street is this?” Our conversations shuffle along with the train:

Martin: “What street is this?”

Me: “Spring Street.”

Martin: “It’s Spring Street!”

Me: “Sure is.”

Martin, as the train leaves the station: “Bye-bye, Spring Street.”

Me: “That’s it for Spring Street.”

Martin: “What street is this?”

Me: “It’s Canal Street.”

Martin: “It’s Canal Street!”

Me: “Looks that way to me.”

You get the idea.

Also, Martin is routinely asking, “Where is _____?” This morning at breakfast he inquired, “Where is the flute?” Which would have been really great, if I’d had any idea where the &*$@ the toy flute was. As it was, I had only disappointment to offer.

The third type of request is meant to be a question, but Martin doesn’t have the form correct yet. When he wants to know the initial letter of a word, we have an exchange along these lines:

Martin: “Bowl starts with a . . . .” (His voice trails off. He doesn’t get the inflection correct for a question, neither the Spanish inflection nor the English.)

Me: “Oh! Do you mean to ask me, ‘What letter does bowl start with?’?”

Martin: “What letter starts with bowl?”

Me: “‘What letter does bowl start with?’ Bowl starts with a b.”

Martin: “Bowl starts with a b!”

In summary, we have experienced progress since my update on questions. Maybe all I need to do for progress is to post an update? In that case, more updates coming. Soon.