Beautiful, Terrifying

Here are two situations I’ve encountered recently:

At the music school again. I’m in the waiting area, with my laptop and four other adults, while Martin takes his piano lesson. A woman enters, accompanied by a teenager and a younger boy, maybe eight or nine years old. All three look alike; I assume these are a mother and her two sons. The mother approaches the front desk with questions about lessons and fees. As she talks to an employee, for a while, she turns her back to everyone else.

Immediately I see that her younger son is on the spectrum. He’s holding a small electronic device, a video game, close to his face as he paces urgent, long-stride circles, humming. He plops to the ground and focuses intensely on the video game, tapping the screen with his thumbs. He rises and recommences circling.

The teenage son, meanwhile, settles into a sofa and starts studying some sheet music. He appears comfortable with the situation, and not embarrassed by his brother. In fact, the teenager looks as if he could be a special-education professional. Magically, his eyes are on both his sheet music and his ASD brother. When the younger boy breaks his circle pattern and bolts down a hallway, the teenager follows him. They return seconds later, the teenager guiding and redirecting to the video game. When the ASD boy intensifies his pacing, then begins to disrupt objects in a sensory-seeking manner, the teenager calmly collects him in his arms and brings him to the sofa, cradling him in all-over pressure. Not once does the mother even have to divert her attention from the employee with whom she’s talking—although she, like any special-needs mom, must sense all that’s transpiring behind her.

After five minutes, the mom settles her business with the front desk, and the teenager’s music lesson is ready to begin. Before he heads off with the instructor, the teenager makes eye contact with his mother, so she knows he’s passing his younger brother’s safety to her.

It’s like watching a master-class in family ASD management.

In Texas, at an indoor playground. It’s Easter Sunday afternoon and Martin is antsy, so my brothers and I bring him to an indoor playground. Martin removes his shoes and dashes into the climbing structure, a sort of gigantic, netted jungle gym. I sit with my brothers in an ample lounge surrounded on all sides by the jungle gym.

Two men enter. They look cool. Super-cool. Sunglasses. Ample, sculpted chests, pecs, and biceps, visible under fitted polo shirts. Nice jeans and shoes. Okay, I’ll say it. They’re handsome. They have four or five children with them. I’m not really sure how many, because my attention goes directly to the one with autism. From his face, I’d say he’s ten or eleven years old, but he’s almost adult-sized. He’s tall and, like many ASD kids, with their gut problems and food issues, he’s overweight. He’s not looking at anyone, or speaking. The other children store their sneakers in the plastic cabinets set up for that purpose. The ASD boy tugs off his sneakers and leaves them on the floor. The kids disappear into the climbing structure.

The taller of the two men, in a white shirt, seems to be the one in charge of the ASD boy. I guess that he’s the boy’s dad. Almost without a pause he scoops the abandoned sneakers and tucks them in a plastic cabinet. The two men take adjacent chairs and begin talking. They seem like good friends. I’m too far away to hear what they’re discussing.

I imagine it’s the New York Rangers, because really cool, handsome men everywhere, even in Texas, like to talk about the New York Rangers.

After some time the ASD boy emerges from the jungle gym. He seems confused until he spots the two men, then runs to them and climbs onto his dad’s lap. The boy is so big that he looks absurd perched on a lap, like a teenager or even a small man curling his body onto another’s. His dad, Mr. Super-Cool, Mr. If-We-Were-in-Any-Other-Setting-I-Would-Take-Him-for-a-Childless-Playboy, continues talking to his friend while wrapping one arm around his son and using the other hand to rub the boy’s scalp. He betrays no hint of feeling awkward about the 150 pounds of kid smooshing his quads. He continues rubbing his son’s head until the boy springs to his feet and scampers back to the jungle gym.

The super-cool guys and their charges leave before we do. (My brothers and I, in tandem, are lazy caregivers. While Martin plays, for more than two hours, we’re sipping coffee and teasing each other, destitute of other ideas for filling a holiday afternoon.) As the other kids get themselves ready, Mr. Super-Cool puts shoes on his son’s feet and ties them. They’re nearer us now, and I hear him ask, “You okay, buddy?” Then, probably because his son is not verbal, he answers for the boy: “You’re okay.” They walk out holding hands.

There is a beauty to scenes like this, to a teenage brother forced to mature into vigilance, to a dude with nothing but tenderness for the child who requires more attention than the rest combined. I want to wave my arms and shout, “Hey, us, too! Autism’s got us, too! I’m proud to be like you!” I want to be counted with those who rise so brilliantly to the challenges they face.

Yet I also regret these scenes. Autism is a monster of our own making. Its incidence is rising from some combination (I don’t know which; who does?) of the dangers we humans have unleashed. Chemical concoctions disguised as food. GMO’s. Antibiotics, overused. Electromagnetic fields. Mercury and other heavy metals. Radio waves. Injected toxins. Pollutants. Pesticides. Sure, I admire the caregivers who meet autism head-on. They’re making positive choices. Where is the choice for the children with autism, who need calming, who crave sensory stimulation, who cannot sleep, cannot relate, cannot adapt, cannot ensure their own safety?

And where will they be when the brave and patient caregivers are no longer available?

We’ve got to stop this.

Martin, in the indoor playground, somewhere.

Martin, in the indoor playground, somewhere.

This Vacation Brought to You by Autism Recovery

I’ve posted sporadically the last few weeks because Martin and I were abroad. Martin had the week off school for Presidents’ Day, so I packed him up for a visit to Adrian’s country of origin, in South America. We flew overnight, Friday to Saturday. We spent Saturday at my mother-in-law’s apartment in the nation’s capital. Sunday morning my mother-in-law, my father-in-law, Martin, and I flew a couple hours farther south, to the small town where my sister-in-law Cecilia lives with her children, Luke and Rosie. You may remember Luke and Rosie from an earlier post; they vacationed with us in Florida after Christmas. Adrian’s other sister, Claudia, also came south, from her summer home, with her three children.

Martin plays in the sunny capital, before we headed farther south.

Martin plays in the sunny capital, before we headed farther south.

Confused? Here’s the cast of vacation characters: me, Martin, my mother-in-law, my father-in-law, my sister-in-law Cecilia, Cecilia’s children (ages 13 and 11), my sister-in-law Claudia, and Claudia’s children (ages 9, 7, and 1).

My mother-in-law, Martin, and I rented a lovely apartment with a well-equipped kitchen where I could prepare stock and breakfasts. Half a mile away, Cecilia allowed everyone else to stay in her three-bedroom home: my father-in-law, Claudia, and five children, including the two who usually reside there. Why did they all go for that arrangement? No idea.

Martin and two Curious George sock puppets check the view from our vacation apartment.

Martin and two Curious George sock puppets check the view from our vacation apartment.

I anticipated challenges on this vacation, and my anticipation was not disappointed. Adrian’s parents know that Martin has autism, but his sisters and their children do not. Adrian has opted not to tell them. He explains that we don’t see his sisters often, and if Martin is going to recover from autism, as we expect he will, then there is no good reason to affix a label that, especially outside the United States, might haunt him long after its applicability. Although I don’t agree with Adrian’s logic or decision, I respect his right to handle his own family. Ergo, mum’s the word.

I could explain away Martin’s ultra-restricted diet with the catch-all “food allergies.” How could I explain his awkward attempts to play? (“Um, he’s nervous because he doesn’t speak much Spanish at home.”) How could I explain his tendency to hide his face when adults speak to him, and in response to any questions only wave backwards? (“He’s so shy! Just wait till he gets used to you.”) What about his appearing, sometimes, out of it? (“Can you imagine? He’s still so tired from the travel.”) How about the fact that he couldn’t spend the night with his cousins, as he wanted to, because I have to carry him, asleep, to the bathroom during the night to make sure he doesn’t wet the bed? I was happy that none of Martin’s South American cousins is exactly his age; the fewer bases for comparison, the better.

If Adrian’s sisters noticed Martin’s challenges—and I assume they did—they kept silent, except once: Cecilia said, “You have so much to do, with Martin.” I responded, “You mean with his food and all the time it takes?” She said, “His food, of course, and also his attention, how you need to watch him all the time.” We were in a crowd, when she said that, and when someone else came by, that conversation fell fallow. I was left wondering whether Martin’s autism will be a fact that everyone knows and no one mentions. Families have those facts.

Martin didn’t “fit right in” with his South American cousins, unfortunately. How could he? For starters, the other cousins live in the same country and see each other often. Martin’s the youngest, save for the one-year-old who doesn’t yet run with the pack in any event. Martin speaks Spanish, but without as much confidence as English, and even his English, while now conversant, remains awkward. And then there’s the autism elephant lurking. I wished I could have told at least Luke and Rosie, the oldest cousins, that Martin has autism. I wanted to see them take ownership of Martin, count him as one of their own and defend him against, for example, the 10-year-old named Valentín who hung around our group and treated Martin poorly. (¡Cállate, cállate!, he complained, pushing Martin away whenever Martin tried to share.) If Luke and Rosie knew why their little cousin is different, I reasoned, they would be more likely to look out for him. We might even have obviated the moment when Martin, in frustration, shut a door on his baby cousin because his seven-year-old cousin said everyone could come into the bedroom except Martin.

Forget all that. Let’s talk about what went right. Over a week-long vacation, Martin had virtually no meltdowns. Not when the horse-riding instructor brought sandwiches for everyone and, because I hadn’t realized we’d be eating, I had nothing for Martin. Not when a neighbor barbecued sausages for the children and, because I couldn’t verify the source or ingredients, Martin had to have a steak instead. Not when we rented bicycle-carts and Martin, as the youngest, had to ride in the front basket seat instead of pedaling. Not when he didn’t get a sleep-over with his cousins. Not even when my mother-in-law was late so I made him walk with me the dusty half-mile to Cecilia’s house.

Totally unrelated to autism. Just a chicken that I saw in someone's yard on my way to my sister-in-law's house and really liked.

Totally unrelated to autism. Just a chicken that I saw in someone’s yard on my way to my sister-in-law’s house and really liked.

I attended a concert, a German trio, with my sisters-in-law and mother-in-law. Of the cousins, only Martin and nine-year-old Matías opted to come. Martin took his cue from Matías. He mimicked everything Matías did. When Matías rose from his chair and sat on an aisle step instead, so did Martin. When Matías moved back a step, so did Martin. When Matías played with the cable barrier, so did Martin. When Matías inexplicably made a fist and shoved it in his mouth (I’m serious), so did Martin. At intermission, when Matías decided to leave and go find the other cousins in the theatre café, so did Martin. Admittedly, that terrified me. Martin, for an hour, in a food establishment with a dark, railing-less outdoor deck on a lake, attended only by one-to-13-year-old cousins, none of whom knows Martin has autism and might need extra supervision? What could have gone wrong? Everything could have gone wrong, and nothing did. After the concert we reclaimed all kids and went to an Italian restaurant, where Martin ate GAPS-compatible fish with capers, showed off how he could cut the meal himself, and didn’t complain that the other cousins had pizza. That night Martin chatted by phone with Adrian—read that again: Martin chatted by phone with Adrian—and renewed my fears by saying, “In the café, Luke gave me a bar to eat.” A bar? A what? Crap! The next day, however, I learned from my sister-in-law Claudia that she’d slipped Luke a pre-approved fruit-and-nut bar in case Martin wanted something. Good, thoughtful in-laws.

Martin and his cousin Matías prepare to enjoy a concert.

Martin and his cousin Matías prepare to enjoy a concert.

Martin went horseback riding with his cousins. The seven-year-old cousin was able to ride by herself. For Martin, the instructor had to tether Martin’s horse to his; Martin was too distracted to hold the reins and guide his horse. Still, Martin went, and happily. The first expedition, I was looking for some exercise and hiked alongside the riders. The second expedition, I had a massage scheduled and left Martin and the other cousins to ride on their own with the instructor. A couple hours later, in post-massage haze, I was at a café, sipping coffee with Cecilia and my mother-in-law and musing about whether we should go find the children, when the whole gaggle of them entered, with Luke holding Martin’s hand. They’d finished up riding, surmised that we were probably at the café, and come to find us. Martin took no issue with the uncertainty and evolving plans.

Martin riding with cousins and friends. Happy trails.

Martin riding with cousins and friends. Happy trails.

Our vacation site was two hours’ time difference ahead of New York, and South Americans keep late summer hours. We rarely ate dinner before 9:00 or 10:00. Martin hit the sack at midnight or so, and slept peacefully until 10:00 or 11:00 am. He tried new foods. (Among them was horse jerky. My bad. I should have read the label more closely.) When I forgot his swimsuit, he swam in his underwear. He watched television, which we don’t really do at home. He relished drinking fresh juice from a hippie-van-cum-juice-stand parked on the beach. He had a good time. Not an autism-accommodated good time. Just a good time. The kind of good time that might not have been possible if we still dealt with sleeplessness, limited language, meltdowns, and the absence of social interaction.

I’ve been bugging Adrian to ask his sisters, or at least one of them, for impressions on how the week went, and how Martin did. So far, no luck getting him to do so.

The last day, before we started the 16 hours of flights home, I asked Martin what had been his favorite part of vacation. He didn’t even hesitate:

“When I rode horses with my cousins the second time and you didn’t come.”

He wanted to be with his cousins instead of me. One cool thing about being an autism parent is that you can find an achievement in any insult.

P.S. As to Valentín, the 10-year-old who didn’t like Martin and showed it, eventually, when no one else was listening, I told him off. “Valentín, Martin is only six years old. He’s a guest in this country, and he doesn’t speak Spanish well. All he wants is to play with you and his cousins. So enough with the ¡Cállate!, got it?” He got it. Even if Martin’s cousins don’t defend him yet, I can.

Snack Drawer

For the past six months or so, I’ve kept Lärabars and other snacks for Martin in the second drawer of our pantry. That drawer contains other foods, too: nut butters (including peanut butter), non-gluten flours, cacao nibs, hemp seeds, Adrian’s chocolate stash, stuff like that. A variety, only some of which Martin can eat.

I never thought Martin paid much attention to where I keep his snacks, until one afternoon two weeks ago. That day, Martin came home from his school, took off his shoes, opened the pantry, and started rummaging through the second drawer in search of a snack.

To me, that seemed like reasonably typical kid behavior and, for Martin, a new independence that I should foster. The second pantry drawer is somewhat too high for Martin to access comfortably (though with the way he’s growing taller, next week that might not be the case). Also, it seemed unfair that he should have to push aside stuff he cannot eat—e.g., peanut butter, or Adrian’s chocolate—to reach his own treats. Therefore, I emptied the third drawer of the pantry and redistributed those items in other drawers (a challenge in my snugly packed pantry!). Then I filled the third drawer with after-school snacks and taped labels on the front: “Martin’s snack selection” and “one snack per day!”

photo 2

The contents of the drawer reflect a preference Martin has (again, typical, I think) for store-bought, packaged goodies over what I prepare at home. I make protein bars, truffles, and macaroons similar to what’s pictured here; Martin wants the colorful, the prettily wrapped, “what you buy at the store!” (The homemade items I send to school.) Note also that not every product in the drawer is 100% GAPS-compatible. A few contain agave and, for whatever reason, have slipped through my control.

The snack drawer has been a big success. Martin loves to pore over its contents and select the perfect “snack of the day.” This weekend, when he was allowed to pick a snack to take to his activity program, he removed five different snacks, lined them up on the kitchen table, took a few minutes to decide which he wanted, then returned the other four to his drawer. When he wasn’t looking, I snuck in and rearranged the returned snacks into the appealing, every-snack-visual format. That’s me.

photo 1

I’m inspired now, to try to display Martin’s clothes in a way that makes him want to pick his own outfits. I like to dress him in the sports jersey of my choice, but I suppose I need to focus on his autonomy, too. The pumpkin glasses he’s wearing in that photo count as autonomy, I guess.

Autism Steals From Everyone

When I was pregnant with Martin, I was in the middle of completing my MFA in writing, and one of my instructors, himself a father, told me this: “You’ll see. When your kid is born, you cats will be just cats. You won’t adore them anymore.”

I’d heard stories of this phenomenon, of the mom who has a baby and then wants to chain the faithful dog outside, or decides that the chattering bird who kept her company all those years wasn’t actually talking. Parents who start a “real” family, only to reject the companions who were family. That wouldn’t be me. My cats had seen me though some tough times, and I intended to return the favor.

“You’re wrong,” I told the writing instructor, and proceeded to bet him a dinner that, six months after Martin was born, I would still be doting on the felines.

I won that bet. When Martin was born, as he grew, when we got the autism diagnosis, and even after we started the all-consuming process of biomed, our cats retained their stature. We have four of them—Levi, Freddie, Edith, and George—all rescued from the street or the pound. Under our protection, they’ve lived luxuriant lives, indoor-only, replete with toys and top-quality food, scratching posts and climbing furniture, cuddling on our bed at night.

Until this summer.

What happened, I still can’t figure out. At the time, I thought it started with Freddie. When we lived in the City, we had some problems with Freddie peeing outside his box. Freddie is a small cat, and nervous. Anything can set him off. We hadn’t had any issues with Freddie in the year since we moved to the suburbs. Then a few months ago, Freddie started peeing outside his box again. And not just a little bit. And not in only one spot, as when we lived in the City. Freddie decided to treat our whole house like a toilet: the bathrooms, the family room and dining room, the throw rugs, Martin’s bed.

Something had to be done. In consultation with the cats’ veterinarian, I experimented. Different kinds of litter. Moving the litter boxes around. Strategically positioning puppy-training pads in areas Freddie hit repeatedly. We made some progress. At least, more often than not Freddie hit a box or a pad, and clean-up was efficient.

Then Levi joined the party. His timing was a wonder. It was a weekday evening, Martin was sleeping, and I had just climbed into bed with Adrian to begin a conversation titled (in my head), “We’ve got to do more to get this Freddie problem under control,” when I heard liquid splashing in our bathroom. I cut the nascent conversation and sprinted to the bathroom to find Levi urinating all over a chair. Levi! Levi, who never in his eleven years had peed anywhere but a litter box! Levi, producing the most dastardly mess.

I swore. I dropped an F-bomb and chased Levi from the bathroom. By the time I had the mess cleaned up—originally, more than a decade ago, I brought the cats to my and Adrian’s relationship, so dealing with their, ahem, issues always seems to fall on my shoulders—Adrian was snoring. Our conversation was postposed until date-night dinner that weekend, by which time Levi had become Troublemaker No. 1. Unlike Freddie, Levi wasn’t just peeing. He was spraying, marking his territory by firing urine directly at walls, doors, furniture, and heating vents. You can clean from dawn till dusk. That smell sticks around.

“I have no idea what’s happened,” I said to Adrian at dinner that weekend. “I don’t know why they’re doing this to us. I think we’ve got to consider the vet’s suggestion, and let them go outside.”

Adrian looked like he couldn’t believe what I was saying. To some extent, neither could I. In the 20 years I’ve hosted cats in my home, I’ve been steadfastly against letting them go outside. To some extent, I was being pragmatic; I’ve lived inside Chicago, New Haven, Dallas, New York City, urban centers inhospitable to feline wandering. But my objection extended beyond simple pragmatism, to generalized affinity for animals. Because of cars, predators, and other dangers, cats allowed to wander have shorter lifespans. Plus, they kill. Inside, my cats kill moths, crickets, flies. Outside, songbirds and mice and squirrels and all sorts of higher orders come into the picture.

As I sat there talking to Adrian, in a restaurant, away (thank goodness) from the cats, I realized something: There is only so much pee I can tolerate. Martin still has trouble at night, and occasional daytime accidents. So I’ve dealt with six years of pee from him already. And there are litter boxes. With four cats, I’m cleaning litter boxes all the time. Now I had pee all over my house. Pee, pee, pee. I was done.

Ever since the Cats Gone Wild! show began, our veterinarian had been advising me to let the cats roam freely. “You don’t live in the city anymore,” she coaxed. “You have more than an acre of property. You live on a dead end with hardly any traffic. Cats allowed outdoors don’t mark inside. They just don’t.”

Adrian and I reached agreement quickly. For the first time since they came to our home, the cats would be allowed outside. I set about taking all responsible precautions, including rabies vaccinations (ugh, let’s not get into vaccinations again!) and flea pills. I asked friends who have outdoor cats, “How do you make sure they come back?” (“They know where the food is,” I was assured.) One Saturday, when we were hanging out on the back deck with friends, we opened the sliding glass doors and left them open. And that was that!

Or so I’d like so say. The truth is that nothing was solved. I came to realize that the originator of the pee problem was neither Freddie nor Levi, but our youngest cat, George. George woke up one morning and inexplicably decided he hated Levi and Freddie. I suppose I saw hints: Instead of four cats sleeping on our bed, there were three, with Georgie elsewhere, and there were hisses and swipes, scratches on Freddie’s nose.

In the face of George’s wrath, Freddie cracked. He started peeing, I think, out of sheer nervousness. Levi started marking in order to warn George off further aggression. Once the cats were outdoors, their true colors became increasingly evident. George strutted around the yard, chasing Levi clear off the property. Freddie kept peeing, too scared to set paw out the door. Levi increased his marking, spraying every ingress Georgie might access, spraying the back patio when he had the chance. When they were all inside, fights broke out.

It was chaos. It was a disaster. I was losing sleep. Imagine this: I have a child with autism, yet what kept me up at night was the fear of who might be peeing where. I woke repeatedly, roaming the house in darkness, looking for signs of trouble.

I’ll skip to where we stand now. As of this writing, Levi and Freddie are living in the basement, and have been for more than a month. Tellingly, they both stopped urinating outside the little box almost as soon as it became clear that they were away from George. And don’t worry too much for them. We have a gigantic unfinished basement. I’ve hauled towels, pillows, and boxes down there to create soft and safe spaces. There are crickets to kill, and—ugh—last week I cleaned up a decapitated mouse. There are ceiling-level windows, under which I’ve placed “cat furniture” so the boys can climb and look out. I moved a chair and table into a quasi-office configuration so that I can spend and hour or two with them each day, working. I’m sitting there right now.

Upstairs, George and Edith are residing, without incident, allowed outside as they want. (I can’t let Levi go outside, because he and George fight. Freddie still lacks wanderlust entirely.)

For now, the problem is solved. The house is clean and fresh. I’m sleeping. Nevertheless, I don’t want Levi and Freddie to live in the basement forever. They don’t deserve it. George started the whole thing. So we’ve come down to this: I’m hiring a cat behaviorist to try to get to the bottom of George’s attitude, of why he started hating Levi and Freddie after years of peaceful coexistence. If the behaviorist can’t help, we will begin trying to re-home Georgie. I will be heartbroken, and I still don’t know if I can do it, but that is the direction we will move.

Why, you might be ask, are you reading all this on an autism recovery blog? What does this have to do with Martin’s journey?

With Martin’s journey, maybe not that much. But it has a lot to do with my journey as I shepherd Martin. There has been too much on my shoulders. I’ve been cleaning and cooking and researching and conducting therapies and finding schools and trying to keep a household together for too long. Too long. These past few months, including two vacations when I took some break from the madness, have prompted reevaluation, as I wrote last week. If in past years I would have indulged the cats their little spats, if I would have lost the sleep to hose down throw rugs at 2:00 a.m., no more. I have autism to deal with, and somewhere under that burden, I have my own life to forge. My cats will always have access to safe and warm spaces, to healthcare, to food, and to company.

Monopolization of my time, or the privilege of ruining my home—those they may have lost. Because autism steals from everyone.

One more thing—I know that, with what I write in this blog, I open myself to ridicule. Deservedly so. As I’ve said before: Homemade probiotic catsup? Camel milk? Spending hours in airport security so supplements don’t get X-rayed? Who does that? And right now you’re probably thinking: A cat behaviorist? Seriously? Who does that?

Think about this: Eleven years ago, when Adrian and I adopted Levi as a kitten, he came with a case of ringworm so pernicious that, after months of unsuccessful treatment, we were forced to take him to a feline dermatologist. Honestly. A feline dermatologist.

So all things considered, Adrian and I might just be getting slightly less crazy.

Darn You Double-Crossing Cruciferous Vegetables

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.

What’s Disappeared

It’s accounting season. Adrian’s assistant has prepared a summary of what our family spent last year on recovering Martin. Supplements, therapies, unreimbursed doctor bills, plane tickets to see specialists, that sort of stuff. It does not include expenses associated with Martin’s restricted diet, like buying only organic or making weekend farm visits for meat. Nor does it include my kitchen make-over, continually purging plastics and aluminum in favor of glass or stainless steel.

Even without the foods and cookware, the total is a large number. Not astronomical. Not bank-breaking. But large.

“Did you think it would be this much?” Adrian asked me.

I replied, “I’m looking at it like this: If someone told us last January, ‘Give me this amount, and within a year Martin will respond to his name, will make eye contact consistently, will interact with friends, will move like a neurotypical child, and will speak in complete sentences,’ we would have written that check, right?”

“Of course,” Adrian said.

He seemed mildly offended that I’d asked the question. But I was on a roll.

“And if someone told us last January, ‘Give me this amount, and within a year Martin’s lethargy and toe-walking and aimless drifting and low muscle tone and sleep problems and clumsiness will be gone, and his echolalia will be nearly gone,’ we would have written that check, right? Because that’s where we are. That’s what’s disappeared.”

Adrian waved his arm in agreement, putting an end to my roll. “We would have paid ten times so much. You know that.”

“So let’s keep it going,” I said.

And we fist-bumped.

Crunchy Granola (Not a Recipe)

Because I’m vegan, many people assume I wear billowy tunics over yoga pants, enjoy camping, and/or engage in frequent protests. You know—that I’m the crunchy-granola type.

Generally speaking, no. I prefer designer clothes, detest sleeping anywhere that lacks a clean bed and private shower, and have a don’t-rock-the-boat personality ill-suited to getting in people’s faces. Though I respect everyone’s views, I won’t be occupying Wall Street anytime soon.

At the same time, trying to recover Martin is making me crunchier. I’ve already banned artificial-chemical-based cleaning products from our home. Our food is organic, and I spend a lot of time on farms picking it out. Our water is filtered, twice.

The ingredient list of Martin’s body wash reads like the recipe for a fragrant dessert: organic coconut oil, organic olive oil, organic aloe leaf juice, organic vanilla bean extract, organic orange oil, kosher vegetable glycerin, potassium citrate, organic shea butter, and organic calendula extract. I firmly believe that, in the event of New York City food shortage, my family could live several weeks, quite salubriously, off Martin’s body wash.

Martin uses a natural, BPA-free toothbrush. Fluoride-free toothpaste.

Blackberries get turned off in the car. Electronics see their plugs unsocketed without mercy. The microwave sits forlorn, idle, wondering what he did to piss me off.

Martin spends more than 12 hours per day in contact with his mattress and sheets, so I’m on the hunt for a natural mattress. I’ve found them for babies. So far nothing in toddler/child size, though. Same for sheets. I may need to replace his toddler bed with a big-boy bed in order to get organic, undyed sheets that fit.

And now I’m learning about flame retardants applied to most children’s pajamas, and how they might affect Martin’s brain. In fact, dyes and treatments used on children’s garments in general may pose neuro-sensitivity hazards. So I’m shopping for organic clothes. Jeans, a three-season coat, and pajamas arrived today.

Have you ever had occasion to note the cost of organic clothes for kids? Martin’s wardrobe is about to get a whole lot more limited.

Shower curtain liners are made with PVC. Get them hot and steamy, it seems, and they’ll release those chemicals into the atmosphere. I used to worry about litter-box fumes. Now it’s eau de PVC. I just ordered a hemp shower curtain. I’ve become Woody Harrelson.

Bottom line: The crunchy-granola life may be my destiny after all. I just can’t believe the toxins to which we expose children every day.

It’s almost enough to make a protester out of me.

Kitchen News: An Update on the Hunt for a Food Processor with Glass Bowl

I amaze myself. I’m anxious to replace my food processor, which has a plastic (and, by now, cracking) bowl, because I think high velocity, blades, and heat are a recipe for chemicals from plastic to get into Martin’s food. What my anxiousness means in practice is that I’ve just managed to kill an entire morning searching for a food processor with a glass or stainless-steel bowl, with marginal success.

Between being on hold and actually conversing with a representative, I spent half an hour on the phone with Robot Coupe. That company sells numerous commercial models with stainless steel bowls (though the feed shoots, pushers, and blade components may contain plastic). The only models possibly appropriate for home use, according to the representative, are the R100, which has a plastic bowl, and possibly the R2N Ultra, which has a metal bowl (some other parts plastic), weighs 36 pounds, and sells for more than $2,300.

Another option is an Electolux, the Dito Dean MUGXU, with 3.2-quart stainless-steel bowl, a commercial model nonetheless small enough for countertop use. But at 35 pounds (how can I store that?) and more than $1,000, well . . . .

I’m hatching a new plan.

I use the food processor primarily for puréeing and for getting rid of chunks in soup. My first thought was to get a glass container for my Vitamix, which resembles an extra-powerful blender capable of puréeing. Unfortunately, a call to Vitamix got me the bad news that, although the company has glass containers in the R&D department right now, none are expected to be available for at least a year. In the past, Vitamix manufactured stainless-steel containers, but those would not be compatable with my more recent model.

So for the time being I’m going to invest in a new stainless-steel immersion blender. I already have a KitchenAid blender with a glass jar, though it does have some plastic around the blade that comes in contact with food. I hope to use those two appliances to work around the food processor as much as possible.

For tomorrow evening I have broccoli-and-greens purée on Martin’s menu. Time to blend in batches and hope for the best.

Quote of the Last Six Days: What Isn’t Tried

I got this quote off the giant flip-pad at my Weight Watchers meeting this afternoon, which attributed the words to “Anonymous.” The quip could’ve originated anywhere, I suppose. No matter. I decided it’s fair game for my Occasional Quotes series.

What isn’t tried won’t work.

Self-evident? Yes. Still, it encapsulates my philosophy these days.

I’m about to embark on a purge of destructive forces from our home. Environmental toxins. Molds. Electromagnetic fields (EMF’s). We live in a 150-year-old building tucked into a massive modern metropolis. Goodness only knows what my efforts will uncover.

I suspect that this is going to be a lot of work, and that in the end it might require even more lifestyle changes. We’ve already tossed the cordless telephones and microwave. The television, receiver, stereo, DVD player, and speakers are hooked to a single power unit so that the electricity to them can be easily cut. The wireless printer, which serves all four household laptops, is shut off anytime it’s not actively receiving data or spitting out paper. I’ve removed almost all plastic from the kitchen. (I’m on the hunt now for a food processor with a glass bowl. I’ll post the link if I find one.)

Perhaps next we’ll learn that the air-conditioner in Martin’s room is spewing EMF’s. Maybe the whole room is bad and we need to move him down the hall to the guest quarters. We have wireless internet, very helpful to me working at home. Will I have to run cables through my home office, and to Adrian’s desk, and to our bed where I usually end up writing this blog?

Staring down possibilities like these, it’s legitimate to ask whether any of this will aid Martin’s recovery. It’s equally legitimate for me to respond that I have no idea. Maybe it will help.

If I don’t try at all, definitely it will not help.

There are lines to be drawn, of course. I can’t keep Martin in the proverbial bubble. (I tried. He got out.) If I discover that Martin’s favorite train (Rosie) or his nighttime clutch blanket (John Paul) is tainted, I’m going to need to hear some pretty solid evidence before I rip the toy from his hands. I have to weigh what’s reasonable.

Before you ask—yes, my definition of “reasonable” has expanded, exponentially, since we started ASD recovery.

Truth be told, I’m hoping to discover that the only toxic items in our household are these horrible old Russian posters Adrian has hanging in the upstairs hallway. Lifestyle change or no, I’m willing to kick those puppies to the curb.

Guilt

Here in New York, next weekend, Developmental Delay Resources is sponsoring a three-day course on “Having Healthy Babies: Outsmarting Developmental Delays”—i.e., autism prevention. According to the event’s publicity page, the course will be devoted to pre-conception health, carrying and birthing healthy babies, and post-partum health.

It sounds provocative, and I think that some members of Team Martin (therapists, nutritionist, &c.) are planning to attend.

I can’t go, though. No way. From an emotional perspective, learning at this point about autism prevention would overwhelm me.

Martin’s cranio-sacral therapist is some sort of intuitive healer. She knows things. On Martin’s first visit to her, she was laying her hands on him, concentrating, murmuring about what seemed to be going on inside his gut. Suddenly she called to me to join them. I knelt beside where they were working on the carpet. The therapist had one hand resting on Martin’s head. She pressed the other hand against my breastbone.

“There’s a void here, something missing,” she said. “You’re not connecting completely with Martin.”

Excuse me?

She continued, “You’ve got to get rid of the guilt you’re carrying about his birth. You’ve just got to let that go and tune into the here and now.”

I was stunned. I had described to her how Martin was born, but I hadn’t used the word guilt. Not about his birth, or anything else. Yet she knew, and knew that it was getting in the way.

Martin’s birth was a series of decisions I did not want. Martin came late to the party; in the 42nd week of pregnancy, against my better instinct, I gave in and let the doctors induce labor. From there, it spiraled. On pitocin, my confused body produced increasingly long, unproductive contractions, until finally it barely unclenched between them. The doctor decided we needed to relax me artificially and ordered an epidural analgesia, which I also did not want. After nearly 16 hours of artificially induced labor, Martin got stuck, sideways, and his heart rate fell. By the time they wheeled me into the operating room and cut him out, I was (unsurprisingly) running a fever, meaning that Martin, who was healthy and alert with an APGAR of 9, was whisked away to the NICU.

So those were Martin’s first days in this world. Instead of coming to us naturally and snuggling into the loving arms of his parents, he met a surgeon’s scalpel and then slept with strangers under the offensive, blazing halogen of a noisy NICU.

I know that environmental factors play a role in autism. I wear the guilt of Martin’s traumatic birth, of my decision to allow pitocin. I wear it like a heavy jacket, pounds and pounds weighing me down.

Was birth trauma related to autism? What is related to autism?

I never should have got caught up in the H1N1 hype and given Martin that unnecessary vaccine. Or most of the other vaccines, either.

We had our kitchen rebuilt while I was pregnant. I breathed that dust daily. Mistake.

I used my Blackberry. All the time.

If there is such a thing as autism prevention, then there’s something I should have done differently. It will be a long time before I’m recovered enough to discuss that topic.