Violent, Unrelenting, and Exhausting: What I Wish I Had Known About ASD Recovery

Yesterday I posted a promise that this blog would return, today, to the six-month evaluation of Martin’s ASD recovery. I don’t want to be the kind of blogger who makes a pledge and fails to pay, especially not when I’ve been blogging only a month. But I’m going to risk breaching my readers’ faith with one more diversion. I have to, because this crap day topping off this crap week compels me to address a new topic: what I wish I had known when we decided to treat autism biomedically. What I wish I had known, so I could have steeled myself.

I wish I had known that recovery would sometimes beat the daylights out of Martin. I’ve already written about how arduous I find chaperoning Martin’s recovery. That’s a bunch of self-indulgent reverie. Martin is the patient actually doing the work of emerging from autism. Martin is the guy too drunk from detox to sleep at night, too drowsy from sleeplessness to function during the day. Martin is the guy whose very cognition vacillates, who must wonder why his mind functioned differently yesterday than it will tomorrow. Martin is the guy who swallows pill after pill, oil upon oil, without protest, who accepts without explanation that he can’t eat what Adrian and I eat, that his sweetest treat is neither birthday cake nor Halloween booty, but a pear. My son today remained his darling, loving self even as he teetered on exhaustion, crying without provocation, unable to concentrate or to enjoy any toy, any game. I endured on the thought that these few years are saving him from a lifetime of lethargy and gut pain, muscle fatigue, and inability to connect with other souls.

If only he too could see the prize.

I wish I had known that my work would be every day, unrelenting. No one knows Martin’s diet, supplementation, and routine like I do. Not my mother, who is visiting. Not Martin’s excellent Track Two doctor, who oversees his care. Not even Samara, who is with Martin five days a week. I can never sleep in; certain pills and drops must be given as soon as Martin rises, and spreading his HANDLE exercises throughout the day means completing some before breakfast. I can leave the apartment for an evening, but I can never take a break; for me to be gone a few hours requires adjusting his supplementation before and after, completing exercises ahead of schedule, preparing food. Last month a family member became ill, requiring me to make an impromptu four-day trip to Germany. I ended up pulling two consecutive all-nighters before I could depart, getting my business affairs in order and then spending nearly 24 hours in the kitchen, freezing meals and training Samara, who had to move into our apartment while I was away. I long to declare a holiday from ASD recovery: a morning, noon, and night just for me, to squander as I see fit.

I never will.

I wish I had known what it feels like to run the proverbial marathon. For at least ten days now, Martin’s progress seems to have stalled. He’s had no concentration. His sleep has faltered. He’s even engaged in self-stimming behaviors. I begin to doubt whether we will succeed in recovering Martin. I can’t help but doubt. This evening I was out on a prepared-in-advance jaunt, showing some tourist friends Times Square after dusk, when I received this email from Adrian: “I was looking at some pictures of Martin and realizing that I am ultimately very scared of the whole thing.” Some months ago Martin’s excellent Track Two doctor commended me and Adrian for noting even the flyspecks of progress—the times when Martin understands a facial expression, or reads a gesture, or engages another child. The recovery process is so long, so tortuous, the doctor said, that the parents who catch these little things are the ones who ultimately succeed. The parents who, on the other hand, await the morning when their child will suddenly wake up neurotypical lack the stamina to finish the journey. They give up. The doctor’s word sounded so true, and I recognize them to be such. But I wish I had known that even those among us who record signs of recovery in every detail, however ephemeral, eventually will flag.

And I wish I knew, now, how to hold it together when recovery is beating the daylights out of Martin, when my work is unrelenting, and when it feels like this marathon will never end.

ASD Recovery Six-Month Review: Language

Of sleep, physicality, language, attention, and behavior, I find myself least satisfied with Martin’s progress in language.

When Martin first started to talk, he marveled us with his vocabulary. He proved himself able to absorb and retain most any word or phrase, and to apply it properly. Fork. Book. Brick. That’s not a telephone. Goal! He grasped sophisticated concepts like possessives. Mommy’s desk. The bicycle of Lola’s father. What’s more, we’re raising Martin bilingual, so he did all this in both English and Spanish, never mixing the two. English for Mommy. Spanish for Papá and Samara, the nanny. Perro. Pato. Baño. Samáforo. Oy, ¡que tráfico! When friends came to visit from Germany, he added Keksen and Donnerwetter! into the mix.

We were proud. As first-time parents who have limited experience with young children, Adrian and I equated a large vocabulary, and the ability to repeat phrases, with exceptional language skills. We showed him off, pointing from object to object. Martin, what’s that? And that? That?

Only later, after it was explained to us, did we realize what was missing. Martin stuck to single words, almost invariably nouns, and to parroting series of words. He never concocted sentences. He never combined his words into original thoughts. He never asked questions.

He never said, “Yes.”

In fact, Martin was echolalic. He knew which words attached to which things, but he had no concept of language’s interactive use. “I” versus “you” was foreign to Martin. His conversation was limited to repeating what he heard last.

Martin, would you like some water?

Some water.

Martin, do you want a cookie?

You want a cookie.

Martin, may I kiss your tummy?

Kiss your tummy.

After six months of biomedical intervention, and almost nine months of five-times-weekly language therapy, not enough has changed. Martin has started using sentences, and also making original observations. Mommy is wearing a necklace. The house has a floor. And he can answer questions with yes, albeit sometimes on the second try.

Martin, do you need help?

You need help.

Martin, do you need help?

Yes.

But although Martin now seems to listen to, and comprehend, what others say, he has not achieved fully interactive conversation. He has not yet ever asked a question, other than regurgitating what is asked of him. What are you doing? What are you doing? He does not use the command form; in its place he substitutes either a declaration—Mommy is going to play the guitar, instead of, Mommy, play the guitar—or a phrase he associates with the outcome he seeks, such as Kiss your tummy! when he wants his tummy kissed. He can’t use pronouns correctly. You want to watch Johnny Cash means, I want to watch Johnny Cash. (If you’re wondering why my three-year-old son wants to watch Johnny Cash, just let it go.) Often he refers to himself in the third person, as if he were Elmo from Sesame Street: This is Martin’s bed. Martin is doing pee-pees. Martin is drinking kombucha. (If you’re wondering why my three-year-old son is drinking kombucha, probably best to let that go, too.)

So I am disappointed with Martin’s language at this time, because it just doesn’t seem to be developing at the same clip as, say, his behavior. I hope that, six months from now when I post a one-year review of his recovery, I’ll have better language news to share.

Until tomorrow, then. I’m off to kiss your tummy!

ASD Recovery Six-Month Review: Physicality

Martin’s body has changed. Before we changed his diet, Martin was lanky with a slightly distended belly. He hovered around the 90th height percentile for his age but only the 50th weight percentile. With the dietary changes Martin began to fill out. At last check he was in the 92nd height percentile and the 78th weight percentile. His belly, meanwhile, deflated. Now I wish for abs like Martin’s.

Martin’s head circumference was and remains large, and I don’t expect that to change. I understand large head circumference to be common in kids on the spectrum. I will, however, point out that my own father has a ridiculously giant noggin—well above the 99th percentile, I know because a geneticist at the Big Imposing Hospital asked me to measure it, which I did with my yellow plastic sewing tape. Moreover, a person would be hard-pressed to declare Adrian small-headed either, figuratively or literally. So I figure that, with giant noggin-ness on both sides of his family, Martin was headed that direction from conception.

We were surprised to learn, when Martin first was diagnosed, that he had low muscle tone; he always had seemed able to run and climb, and it’s easy to mistake those actions for strength. But a neurologist at the Big Imposing Hospital said, and Martin’s excellent Track Two doctor confirmed, that his muscle tone was low. In fact, Martin’s trunk strength was so lacking that he slouched whenever he sat. The muscle-tone issues now have almost completely resolved. Martin’s physical therapist recently said that his muscle tone has become more or less indistinguishable from that of a neurotypical child.

Martin used to cycle in and out of lethargy. About three-quarters of his waking hours he spent in Tasmanian-devil mode. The remaining time he collapsed on the floor, maybe pushing a toy back and forth, without the energy to rise. I cannot recall the last time we experienced lethargy—Martin’s, that is; I’d be happy to enumerate the dozen or so times today when I felt lethargic—that was not connected with a sleepless night.

Until this spring, Martin did “posturing,” from discomfort: He clutched his stomach and leaned forward or squatted. He fell asleep posturing, in a quasi-fetal position or with his backside thrust skyward. He even postured while running, which might cause him to pitch forward and slide headlong across our hardwood floors. Though it seemed inappropriate from me and Adrian to laugh, we did. Occasionally.

Martin used to do a lot of “tip-toe walking,” or ambulating by shuffling his feet, heels off the ground. These days he uses a conventional heel-to-toe step, except on bad days when he reverts to tip-toe walking. Then a few reminders to do “big-boy walking” usually snap him back to heel-to-toe.

In terms of where we have room for improvement, of course I’d like to see the elimination of all tip-toe walking, unless Martin is, well, consciously tip-toeing, like in a game of mischief.  His coordination still needs work, too. I think we’ve come a long way since the Big Imposing Hospital scored him in the bottom 1% for manual dexterity. Nevertheless, his pincer grasp and objection manipulation still lag. Also, Martin is a klutz. (I blame this, like the big head, on Adrian. I won’t say “klutz” about Adrian, but the term “penguin feet” does come to mind.) If Martin is going to fulfill my—I mean, his—dream of playing the U.S. Open tennis tournament by age 20, we’ll need to stomp out the klutziness.

Finally, one additional aspect of physicality is appearance. And dagnabbit if throughout this entire process Martin hasn’t been getting cuter and cuter.

Or perhaps that’s just the mommy in me talking.

ASD Recovery Six-Month Review: Sleeping

My last post, about my sleeping, alarmed folks. I received a number of concerned messages from friends and family. Even a phone call from my brother-in-law, who lives 5,000 miles away and wanted to tell me everything will be all right. Thank you, readers. I know that everything will be all right. And in fact, following through on my plans to get myself more rest just like I tackle Martin’s needs, I slept eight hours last night. Eight hours!

In celebration, I’m going to post about sleep again. Martin’s sleep, that is.

It was late January/early February 2011 when Adrian and I changed our plans for Martin and decided to treat his autism biomedically. From that point we needed about a month to get up and running—to convert his diet, to locate and visit a Track Two doctor, to find a professional to guide us through recovery.

That means we’ve been at this for about six months. I think now is an appropriate time to review how far we’ve come and to acknowledge what we still need to work on. I’ve divided Martin’s development into five areas: sleep, physicality, language, attention, and behavior. Over the next five days I will post about each of these areas, beginning with sleep, which is where we saw the fastest and most dramatic change.

Sleep was an issue from very early in Martin’s life. At about seven months old he woke erratically and cried sporadically throughout the night. I remember one particularly devastating week when Adrian was in Europe, six hours ahead of New York, on business. He was trying to concentrate on morning meetings while receiving middle-of-the-night emails from me, two and three per hour, complaining that Martin was up again, that I hadn’t even fallen back asleep since the last time. As soon as Adrian returned from that trip, we “sleep trained” Martin, using the Dr. Weissbluth method. The sleep training was tough (more specifically, tough love), but we got Martin sleeping through the night.

The success was short-lived. Not long after his first birthday, Martin developed even more severe sleeping problems. He became unable to settle himself, rustling about for 90 or even 120 minutes before he could fall asleep, then waking during the night or very early in the morning. Back then Martin slept in a large oval-shaped crib. When he started walking, he would rest his hand on the crib’s rail and run, around and around and around the crib’s interior until he dropped from exhaustion.

Once Martin moved to a toddler bed, the best chance we had was to restrain him physically. Either Adrian or I would sit next to the bed and pin Martin’s ankles to the sheets, to prevent him from goose-stepping in place. Martin would respond by thrusting his arms into the air until we held them down as well. Thus confined, Martin would flap his hands, wiggle his fingers, roll his head from side to side. He had to move. When he finally slept, it was in an odd position, often bent, his face pressed into the mattress and his backside aloft like a mountain peak.

The Big Imposing Hospital misdiagnosed this as “restless leg syndrome” and put Martin on iron supplements that stained his teeth. When the sleeping trouble continued unabated, they conducted an overnight sleep study, wired him up with brainwave sensors and breathing monitors. They found nothing.

By January 2011 Martin took one-to-two hours to fall asleep and most nights was awake, restless, for a three-to-four-hour window sometime between midnight and 6:00 a.m. On average, he slept through the night only once or twice each week, and in those instances he awoke at 5:00 or 6:00 a.m., unable to sleep again. Daytime naps didn’t help the situation; napping gave him the energy to keep himself awake even longer at night, sometimes until 11:00 p.m. or later. (His bedtime generally has been, and remains, 7:00 p.m.) We tried a weighted blanket, to no avail. He spent his days in bleary-eyed misery.

Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.

As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.

The quality of the rest has changed, too. He used to continue moving throughout the night. His head would be at the foot of the bed, then hanging off the side, then wedged against the headboard. Attempting to keep him covered was a fruitless endeavor. Now his head stays on the pillow, or at least in its vicinity.

Is there room for improvement? Always. I’m looking forward to the day when the detox nights end, so you don’t have to read posts like yesterday’s. I would like it if we could reduce Martin’s fall-asleep time to 15 minutes or less. And I’m sorry that we can’t allow Martin to nap. There are days when he looks like he could use an hour or two zonked out at midday. Can’t happen, though. Even a 30-minute nap keeps him awake until late into the night, and we lose precious hours of sleep.

Martin’s sleep is good, and getting better. My sleep is miserable, but hope springs eternal.

ASD Recovery Is Not a Big Bed of Roses. At Least Not One I Can Sleep In

Of all the facets of Martin’s recovery process, the most difficult for me has been my own exhaustion.

I’m exhausted because I just don’t sleep. There is so much to do, and I’m not the kind of person who can let it all go at 10:00 p.m. and doze off. I need seven-and-a-half hours’ sleep to feel rested. I can’t remember the last time I managed more than six. Most nights the total is closer to five. When work is busy it can dwindle to two or three.

Every couple weeks the sleeplessness catches up with me, and I feel myself toppling into depression. Tonight was such an evening. The apartment is a mess, I have three high-pressure projects for work, and Adrian has announced that he’s extra busy at the office and won’t be able to help out. Meanwhile, I am so tired that my attention span has faded to seconds. This evening I wandered from task to task, doing this and doing that and mysteriously finding nothing done, with a deep ache in my legs that means fatigue has infiltrated every muscle. With the fatigue comes desperation. When Adrian and Martin left the apartment for a short walk, I dropt onto the kitchen floor mat and slept for ten minutes amidst the wilted brussels sprout leaves and other accumulated dreck.

I committed to get a full night’s rest tonight, at least this one night. I left laundry stacked on the table, receipts scattered on the counter, and the guest room unmade, though guests are due tomorrow. I did not blog. I was in bed by 10:30 p.m. The iPad was off by 11:00.

It’s after 5:00 a.m. now. If you’ve been reading this blog, you may know enough to fill in the last six hours. The laundry, receipts, and guest room occupied my mind and erected a little barrier to sleep, which I was not able to cross until 12:19 a.m. or so. At least, 12:19 is the last time I remember glancing at the clock. At 2:02 a.m. Martin called me in a panic. Adrian went to him. I was able to sleep again until 2:42 a.m., when Adrian returned and said Martin was still awake, with detox symptoms. From 2:42 until 4:06 a.m. I lay in bed. I dozed a few minutes now and then, each time roused by Martin crying, “Mommy!” from his room. Martin stayed in his bed, so I resisted going to him. At 4:02 a.m. a mosquito bit me.

At 4:06 a.m. Martin became agitated and unable to settle himself. I gave up and brought the iPad to his room. Here I sit.

Best case scenario, Martin falls back to sleep within the next 15 minutes, say, by 5:30 a.m., and I am back to sleep myself by 6:00 a.m. Adrian has his alarm set for 7:00. I’ll get up then, too. Samara isn’t coming today—yesterday’s hurricane-cum-tropical storm flooded her basement, so she’s staying home to clean—and I will feel oblgated to get up at 7:00 and prepare everything for the substitute nanny who’s due by 10:00 a.m., plus make up the guest room.

I will have slept from 12:19-2:02 a.m., from approximately 2:10-2:42 a.m., some 20 or 30 minutes between 2:42 and 4:06 a.m., and from 6:00-7:00 a.m. Grand total, three hours and 15 minutes. This day, this day that begins in less than two hours, will be a stupor. I tell myself that I will nap, but I won’t. If I wrest half an hour from work and food preparation, I will put away laundry or try to deal with the downstairs linen closet, where Freddy the cat has been peeing.

When friends or acquaintances ask about Martin, I give one of two responses. If they don’t know Martin has autism, I say he’s “getting so big” and offer a milestone or two that most closely track neurotypicality, like how high he can count or what songs he can sing. If they know our situation, I speak enthusiastically (and not disingenuously) of the progress we’re making.

But I dream of responding the way I feel right now. Covering my head with my hands, collapsing, crying. Explaining, “It’s so hard. It’s just so hard. I don’t know how I can go on.”

That’s fantasy, of course. Drama. A scene that plays out much better in my head than it would in reality. I would get limited sympathy, and in the bigger picture, I deserve limited sympathy. I’ve already acknowledged that I have every advantage in the world when it comes to treating Martin. I don’t have to know the anguish of wanting to do more for Martin than I can afford. My health is good, and I can survive without much sleep, at least these few years hat recovery takes. Adrian helps when he can.

The hard truth is that sleeplessness is of my own doing. I’ve mastered most of what I have to do, so far, for Martin’s recovery. The exception is my own schedule. If I can only manage to attack my sleep schedule with the same ferocity as food, supplements, and exercises, I can improve the situation a lot.

So I’m going to sleep an hour until 7:00 a.m., then try to find the energy and clear-headedness to solve another problem. Stay tuned.

Magic-Potion Fatigue: Vitamins and Oils and Supplements, Oh My!

Martin’s day is governed by a ditto sheet. It’s a print-out that I designed.

At the top are spaces to note the date and day of the week, followed by how Martin slept the previous night. About half the page comprises a chart describing each of Martin’s sixteen HANDLE exercises and identifying the adult responsible—me, Adrian, or Samara—for completing the particular exercise. With each description is a box for the adult to write the time at which the exercise was completed, because some of them cannot be done too close together.

Below the HANDLE chart is an entirely separate graphic, this one devoted to Martin’s biomedical interventions and food for the day. The food is easy. I jot down what he eats for breakfast, lunch, snacks, and dinner; nine times out of ten I’m just transcribing what appears on the typewritten menu I devise a week in advance. For the biomedical stuff, which along with the restricted diet is the heart of what I call Track Two autism treatment, I list each vitamin, oil, or supplement Martin needs to take, and when. Next to each of these is a box to check once the supplement has been administered. I check most of the boxes. Samara checks the rest, for the supplements she does mid-day.

Finally, at the bottom of the ditto is a space marked “Notes,” where I record how Martin’s day went, how he acted, his bowel movements, any remarkable developments, and so forth.

This ditto is revised every time we visit Martin’s HANDLE therapist, homotoxicologist, or Track Two doctor.

I am not going to list Martin’s supplements in this post. I don’t think that would be helpful to other parents/caregivers, because such a routine must be professionally customized. I will say that on Martin’s current supplements graphic are 46 boxes to check. Most boxes represent one item each—one pill, one capsule, one type of drops, one scoop of powder, one teaspoon of oil, one dab of cream, one spoonful of liquid. A few of the boxes denote “combos,” like eight types of homotoxicology drops combined, or three different phenol drops. Two boxes are checked only every third day. Many of the supplements I can combine and give at once, like vitamin D, vitamin E, and vitamin K2 floating in a teaspoonful of MCT oil. The supplements chart represents everything recommended by Martin’s Track Two doctor, allergist, and homotoxicologist. Each of them knows what the others are doing.

Almost nothing we give Martin requires a prescription to purchase. It’s gentle and natural, like fish oil, parsley extract, probiotics, or digestive enzymes, stuff you might find in an organic grocery.

And getting through the extensive routine isn’t half as bad as you might think. It takes time, but the chart makes it easy to keep track of, and Martin helpfully swallows just about anything I or Samara pops into his mouth.

What is driving me bonkers, however, is trying to find a way to spread the supplements out as requested. Several of them are not supposed to be taken within 30 minutes before or 90 minutes after eating, and a couple are not supposed to be taken at the same time as other supplements. Martin spends about 12 of every 24 hours in bed. In the remaining 12 hours he eats three meals and at least one snack. In less than two weeks he also will be in school, or traveling to/from school, for seven hours each weekday. Seriously, there just are not enough hours in the day to get the supplements right. I have the chart divided into first morning, 10 minutes before breakfast, with breakfast, after breakfast, after school (this in anticipation of his new fall schedule; used to be with lunch), after bath, before dinner, with dinner, after dinner, and at bedtime. Even that is not sufficient. I cut corners on spreading everything out.

When we first began biomedical intervention, I stored Martin’s supplements in a wire basket on the counter. As the routine expanded the supplements moved into more spacious quarters in a plastic food-storage container (which I’m no longer allowed to use for food storage), and then two plastic food-storage containers, plus an in-door shelf of my refrigerator. By June the counter was getting so cluttered, I had no choice but to evict a couple stacks of dishes and surrender the entire bottom of my dish cabinet to supplements. That’s the picture below; most everything there is Martin’s, except for half a dozen bottles of my own vitamins, and a tube of poultry-flavored toothpaste for our cat Freddy’s at-home dental hygiene needs.

There’s one more box that gets checked on Martin’s daily ditto log: “brush teeth.” That means Martin’s teeth, not Freddy’s. Because in the course of an ASD-recovery day, it’s easy to forget the obvious.

He Does a Lot. It Just Doesn’t Require Doing Much

We’re New Yorkers.

Before we radicalized Martin’s treatment, we also acted like New Yorkers. Saturday mornings Adrian took Martin to the playground while I went to the gym—Adrian called it the “Daddy Hour,” because the playground teemed with fathers and their toddlers, while the respective mommies slept in or aerobicized—and then we met for brunch at a favorite organic restaurant.  Saturday afternoons we took an early dinner wherever we happened to be in the City, and usually at a pub. Sunday mornings we ate brunch at Middle Eastern joint near my church. Sunday evenings we ate family dinner at a popular Italian restaurant in our neighborhood. If Adrian could leave the office before 6:00 p.m. on a weekday, Martin and I picked him up and we went for snacks.

We took frequent weekend trips, often spur-of-the-moment, to the Island, upstate, the Jersey shore, Cape Cod.

The New York lifestyle ended when we decided to fight ASD biomedically and through diet. We almost never eat out as a family anymore. It’s not so much that we mind having to bring Martin’s food with us. Instead, it seems unfair. Martin has to sit at the table and watch us eat foods he can’t have.

Saturday mornings are not playground time anymore. They’re reserved for Adrian and Martin’s RDI exercises while I cook a large breakfast, trying to compensate for the loss of brunch. Sunday mornings Martin and I eat at home. Adrian drops us at church and escapes to the Middle Eastern joint, now with the company only of a book.

Weekend trips have dwindled. They take days of planning. Cooking and filling a cooler with heat-and-eat meals. Dividing and packing the correct oils, additives, powders, and supplements, some of which must be kept refrigerated. When we do leave town, we can’t stay anyplace without at least a kitchenette, so we end up visiting private homes or finding “suite”-type hotels. We love cruises, but those are out for a while. This summer we found an alternative vacation and rented a house in Maine.

A couple days ago a friend asked me whether I shoulder alone most of Martin’s treatment regimen, or whether Adrian helps.

I responded immediately and confidently that Adrian helps, a great deal.

But other than the RDI exercises, I couldn’t explain how.

I have the answer now: Adrian has, without complaint, accepted the wholesale abandonment of our former lifestyle. That takes a lot—to change what you enjoy, to create new models of together-time, to become a different kind of family. And he had to do it within months of learning that his only child has autism, and adjusting his expectations accordingly.

So Adrian helps by not resisting.

Am I giving him a pass? Maybe a little. But he’s the one who works full-time. More than full-time. It also bears mentioning that, from what I’ve seen and heard, the No. 1 impediment to many a mother treating her child’s ASD is an uncooperative father.

Sorry, dads out there. I know you are wonderful! It’s just that some of you are still learning to believe in recovery. I’m lucky that Adrian already does.

Autism Recovery Is Impossible. Like, Everything About It Is Impossible

So garlic and onion are gone from Martin’s diet, along with all tomato, peppers, eggplant, nightshades in general, and (hen) eggs. At least for the time being.

You may remember that a couple weeks ago Martin visited a (second) naturopath/allergist, who deemed Martin sensitive to phenols in those foods. He recommended that they go away for about six months, while we treat the sensitivities.

Well, that’s impossible, I thought at the time. We’re so restricted already, and my taste strategy consists of 90% garlic, 8% onion, and 2% whatever else winds up in the mixing bowl. No way I can lose garlic and onion.

This afternoon, as I modified a vegetable chowder recipe to make it garlic-free, I realized that what I melodramatically deem impossible seldom is. In a very short time, cooking without garlic and onion has become second nature. I’ve found ways to substitute. For onion, I try to consider the overall composition of the dish, what flavor I’m shooting for—fortunately, I have rather imprecise aim—and whether celery might not work, or the sharper celeriac, or another root vegetable like a turnip or a parsnip. And while I do miss my trusty sidekick garlic, its absence has prompted me to experiment more with my spice rack’s eager understudies like white pepper (doesn’t fall under the pepper prohibition) and fenugreek. Yes, my recipes taste different. But no, they do not suck. Or at least not enough that Martin has noticed.

I intimated in an earlier post that every step of this process began as impossible. Long before we radicalized Martin’s diet, before we even came to understand that recovery is possible, Adrian and I heard about mainstream medicine’s lone concession to diet’s effect on autism: that a gluten-free diet, for reasons allegedly unknown, may benefit some persons on the spectrum. Back then, I thought going gluten-free would be so difficult, so monumtenally life-changing, that I would at best give it a try for a month, then abandon the effort if I saw insufficient results.

Then we radicalized, and our consultant Kathleen was explaining to me that we’re not talking just gluten-free. We need to be thinking grain-free (impossible). Corn-free (impossible). Soy-free (we’re vegetarians; we love soy). Nearly fruit-free. Starchy vegetable-free. You get the picture.

Back then, my heart sank as Kathleen spoke. I trembled at the thought of what might go next.

Yet here we are. Pancakes without flour or eggs? Give me some cauliflower, spices, and duck eggs. I’ll get it done. Hummus without garbanzos or garlic? I’m on it.

We’re facing new challenges these days, as I delve deeper into what it takes to make our home safe for a child living on the spectrm with its attendant sensitivities. Commercially available household cleaners, other than crunchy-granola natual stuff, went first. The wireless phones are gone; I actually have to sit down at a desk when I want to talk. Blackberries are off, when possible. Tap water is fltered twice before it passes Martin’s lips. No fluoride toothpaste. No plastic utensils or storage containers in the kitchen. No microwave. No aluminum foil.

But we still have a wireless internet router, and a wireless printer/scanner/fax. I haven’t yet had the apartment tested for electromagnetic fields. And we live in New York City. Even setting aside the omnipresent aroma of car exhaust and doubtless gazillons of satellite waves beaming through our home, we have construction, and construction dust, on three sides of us right now.

It’s all impossible.

Breaking Dawn, or ASD Detox Drunkenness

I’m on the iPad again. I’ve been exhausted since our trip to Chicago and was trying hard for a good night’s sleep tonight, but it was not meant to be. It’s just after 5:00 a.m. I’ve been in Martin’s room since 2:15.

Martin is detoxing. In the big picture, that’s a grand thing. In the middle of the night, it’s darn easy to lose the forest for the trees, the trees being sleep deprivation and annoyance. When Martin is detoxing, as I understand the process, pathogens—or yeast overgrowth, or viruses, or whatever we’re fighting at the moment—are dying off within him, and the little buggers don’t go without a fight. They flare up, causing mayhem in Martin’s system.

The result is that my three-year-old gets something like drunk. He thrashes around in his bed. He cries randomly. His sleep quality suffers. And he exhibits symptom that has freaked out me and Adrian ever since we first encountered it with yeast die-off: Martin laughs. Doesn’t sound so bad? Well, it’s not his pleasant, little-boy, tickle-me-some-more giggle. It’s a roaring, maniacal guffaw wholly inappropriate for a toddler. He cracks himself up singing song lyrics or repeating random phrases that, during the day, would produce no effect. At this moment he’s singsonging “Sorry about that!” interspersed with whoops of laughter that could suck the oxygen out of a whale.

As always, it could be worse. At least Martin’s not an angry drunk. To the contrary, he’s having the time of his life.

If I were to leave the room, the situation would change quickly. He would likely stay in bed (we’ve trained him in that), but his jolliness would turn to anguish. He hates to be alone during nighttime detox. So I stay, or I tag-team with Adrian so that one of us is here until Martin sleeps again.

My consolation prize for these all-nighters is two-fold. First, as I said, overall, detoxing is highly desirable, exactly what we’re trying to achieve these days. It is so directly consequential that Adrian and I often notice that interminable nights are followed by daytime breakthroughs like better speech and focus. Second, sleeplessness from detoxification is relatively infrequent compared to what we experienced before we radicalized Martin’s treatment. Martin used to be unable to sleep simply because he lacked the self-control to settle and/or the world overwhelmed his senses. We spent anywhere from 90 to 120 minutes just getting him to fall asleep (we had to restrain his legs physically, to help him lie still) and then expected that, most nights, he would be awake for several hours between 11:00 p.m. and 6:00 a.m., doing nothing other than verbally self-stimming and rhythmically kicking the wall or marching in place. The memory of those days and nights makes the occasional drunken midnight fiesta quite tolerable.

So now it’s 6:00 a.m. and the dawn is breaking. One hour to finger-peck this post on the iPad. At least I’ve put part of my night to good use.

Something’s Fishy

In my recent post describing Martin’s diet, I mentioned that we had added three non-vegan products: eggs (now, duck and quail eggs), ghee, and honey.

I neglected to mention fish oil. I suppose it didn’t make the cut because, in my mind, it falls more on the “supplement” side, and less on “diet.” Fish oil is the most recent non-vegan addition to Martin’s diet. For me, it was also the most difficult to come to terms with, as it is not only non-vegan, but non-vegetarian. I’m certainly hoping that Martin will not be swallowing it for long.

If you think in vegetarian terms, you might be wondering why I decided to allow fish oil. What happened was that Martin’s excellent Track Two doctor wants Martin to have 1,000 mg (in any combination) of eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) daily. There are good sources of DHA that are vegetarian, usually under the brand name life’s DHA. I searched and found the highest-DHA vegetarian oils I could. Those oils have plenty of these omega fatty acids for the general population. With Martin needing so much DHA and EPA, however, I was having to give him several tablespoons of the vegetarian oils in order to hit the 1,000 mg mark.

Martin, you may remember from the diet post, was previously showing some signs of ketosis. I want to keep healthy fats in his diet, but not to overdo it. Since Martin already takes MCT oils twice daily, and his diet encompasses plenty other oils, I felt that several additional tablespoons of vegetarian oil with DHA was, indeed, overdoing it.

So I bit the bullet, so to speak—I’m trying to work this into some metaphor about shooting the fish or something, and I’m failing—and got Martin some fish oil, with which I am able to clear 1,000 mg EPA/DHA with only one teaspoon. I was worried about the possibility of an allergic reaction, as one of my brothers is terribly allergic to all seafood. No signs of that so far.

The whole decision reminded me of when Adrian and I thought the hardest thing we would be doing for Martin, diet-wise, was trying to keep him vegan. Then, after Martin’s ASD diagnosis but before we radicalized his treatment, we wondered how we would ever be able to go gluten-free with him. Those days seem so bygone, almost quaint.