Chumbawamba, Friedrich Schiller. I’ll Be a Hero. I Know I Will

The ASD recovery six-month review continues this evening. I’m posting twice today. I’m posting right now because Adrian feels depressed. We’re having the less-than-fabulous week I wrote about last night, and then this morning he read a father’s Wall Street Journal piece about a 15-year-old on the spectrum. The article reflects the grieve-for-the-child-you-don’t-have, celebrate-the-child-you-do-have, learn-from-difference perspective I discussed in my very first post.

Adrian emailed me the article. (In the event you’re reading between the lines, yes, it’s Labor Day, and we’re both working—lawyers to the core. Martin is out playing with my mother.) I read it and promptly replied to Adrian: “No. [Expletive] that. I’m not doing one iota of grieving until I have exhausted every avenue for overcoming ASD. No more articles like that, please.”

I refuse to grieve. I refuse to accept. I refuse to live with autism. I honor and adore Martin for who he is, at every step of this journey. But I refuse to stop trying to change him.

These words probably come across as haughty. It looks like I am suggesting that I—that we, all of us soldiers who believe we will recover our children, all the conquistadors who already recovered their children—have found a better way to deal with autism. Believe my assurance that I am a million miles from haughty about recovering Martin. I am uncertain, wobble-footed, and terrified about whether we will reach our goal. I wonder whether we are being taken on a long, expensive ride designed to exploit the hopes of desperate parents. This entire experience has humbled me, and Adrian, like nothing else. We have one child. We intended him to be perfect. Even when we recover Martin, he will be behind his peers. He’s lost so much time living alone in Martin-Land, under-communicative, distanced from us and other children.

I speak in absolutes because, from my perspective, acceptance is a dangerous slope. Each step toward reconciling myself to Martin’s autism is a step away from the unwavering determination needed to see this recovery process to its end, wherever that may be.

This Wall Street Journal article that depressed Adrian is, ironically, exactly the kick in the pants I needed this week. Reading it dropped that old 1990s Chumbawamba song Tubthumping into my head. You know the one: “I get knocked down, but I get up again. You’re never gonna keep me down.” Cheesy? Yes. Uncomfortably catchy? Maybe. A little shot of adrenaline when you need something to keep you going? Sure can be.

I’m guilty of various musical mantras these days. Adrian, a classical music fan, wonders why I’ve asked to hear Beethoven’s Ninth Symphony in the car lately. He thinks I like the beginning of the fourth movement, the main portion of Schiller’s Ode to Joy that everyone knows. What I really want is a later, less-popular chorus of the Ode, this one: “Froh, wie seine Sonnen fliegen / Durch des Himmels prächt’gen Plan, / Laufet, Brüder, eure Bahn, / Freudig, wie ein Held zum Siegen.” That means, “Happy, as his suns fly / Through heaven’s magnificent plain / Run, brothers, your way / Joyful, as a hero to the victory.”

Freudig, wie ein Held zum Siegen. Joyful, as a hero to the victory.

I will never stop. Chumbawamba, Friedrich Schiller. And this hero to the victory.

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 Recipe: The Actually Tasty Broccoli-And-Greens Purée

I promise to return, tomorrow, to my ASD recovery six-month review. Meanwhile, I realized this evening, as I prepared it, that I have not yet posted the recipe for my most-favorite go-to dinner for Martin: Indian broccoli-and-greens purée. You may be thinking that broccoli-and-greens purée sounds too healthy to be tasty. This dish is indeed healthy. On the other hand, I pile on the fats and spices to make it rich and delicious. As evidence of its appeal, I offer an anecdote: This evening Adrian was helping Martin eat, while I meted out the day’s final supplements and prepared Martin’s room for bedtime. Martin was watching a Sesame Street video and obviously content with the food. Nevertheless, at some point Adrian (who had already polished off his own portion of purée) called, “Martin says he doesn’t want any more of his dinner. He says I can finish it.” Yes, my husband was attempting to steal food from our three-year-old son. It’s that yummy.

As to why this is a favorite go-to dish, it requires very little that is fresh, except for sweet potato or squash, and ginger, which can all hang around for quite a while before going bad. That means I can schedule broccoli-and-greens purée toward the end of the grocery-shopping cycle and not worry about the ingredients spoiling before I prepare the meal.

The most challenging ingredient is cashew cream. I make cashew cream at home. I soak raw cashews overnight in purified water, drain and rinse them, Vitamix them at high speed with more purified water, strain through a nut-milk bag to make cashew milk, then cook the milk over medium heat (stirring constantly to prevent scorching) until it becomes creamy. This concoction keeps well in the refrigerator. If you want to avoid making cashew cream at home, replacement options for this recipe include (1) a nondairy cream cheese that fits the requirements of your child’s current diet, such as Dr. Cow; (2) a nondairy yogurt that fits the requirements of your child’s current diet; or (3) creamed coconut (I like the Let’s Do…Organic brand), very modestly diluted with warm filtered water.

This recipe is adapted from a version of nariyal sak found in Lord Krishna’s Cuisine: The Art of Indian Vegetarian Cooking. That’s a book about Vedic cooking, which among other things does not use onion or garlic—very helpful to me in these trying months until Martin is allowed to have them again. As I’ve made clear, I think onion and garlic are sustenance of the gods, except (apparently) Lord Krishna.

10 oz. frozen broccoli
10 oz. frozen spinach or kale
10 oz. frozen something else green, like asparagus or green beans
1 sweet potato (or 1/2 acorn squash), peeled and diced
2 green chili peppers (I leave these out right now)
1″ chunk of ginger root, peeled and sliced
1/2 tsp turmeric
2 tsps ground coriander
1 tsp salt (I replace with kelp or dried and ground celery)
1/4-1/3 cup ghee
2 tsps cumin seeds (preferably pre-soaked and dried)
1 tsp garam masala (this is an Indian spice, available at most groceries)
1/4-1/3 cup cashew cream (see introduction, above)

Put the frozen veggies, sweet potato or squash, chili peppers if using, ginger root, turmeric, coriander, and salt or salt replacement into a large pot, turn the heat to medium, and cover. Stirring occasionally to prevent sticking, let everything simmer until the sweet potato or squash is very tender, about 45 minutes. Then purée the cooked mixture in a food processor.

Heat the ghee over medium-to-medium-high heat in a large frying pan. (I know it seems like a lot of ghee, but everything else in the recipe is salubrious. Cut yourself a break and throw in ghee with abandon.) When the ghee is hot, add the cumin seeds and let them sizzle for 30 seconds until they darken a little, then scoop in the entire puréed greens. Cook until all the ghee is absorbed into the greens mixture, about five minutes.

Reduce the heat to medium-low and stir in the garam masala and cashew cream. Warm through and serve.

If your child is able to have grains, rice makes an ideal accompaniment to this dish. I try to complete the Indian effect by quickly frying, in ghee, the quinoa “pita breads” my mother makes for Martin and pretending that they are naan. That is mostly for my own amusement. Martin wouldn’t recognize a naan if it crawled into bed with him.

ASD Recovery Recipe: Eenie-Meenie-Zucchini-Tahini

If a food is vaguely pasty and not clearly identifiable as puréed broccoli, my son calls it “hummus.” Skordalia, blended dahl, even nut butters—in Martin’s palate, they’re all hummus. I don’t mind so much; after all, he likes hummus, in all its iterations. Nevertheless, I crave some variety in monikers, and I’m not above going cutesy to get it. That’s how this recipe, a version of which Kathleen Reily sent me as “zucchini hummus,” instead became known in my home as eenie-meenie-zucchini-tahini. If you can throw a bunch of stuff in a food processor or Vitamix, you can make eenie-meenie-zucchini-tahini. Saying the name ten times fast is much more challenging.

2 peeled zucchini, roughly cut
1 cup raw tahini
1/3 cup fresh lemon juice, or mixed lemon and lime juice
1/2 cup olive oil (or another light-colored oil such as macademia, to taste)
sea salt
1-2 tsps ground cumin

Process all ingredients in a food processor or Vitamix until smooth and creamy. Among other small variations, this recipe can also be made with garlic (I would say four cloves raw or six cloves roasted). When Martin can eat garlic again, I’ll go back to adding it, because with the exceptions of hibiscus tea and (some) desserts, everything tastes better with garlic.

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.

ASD Recovery Recipe: Curry-Lentil Patties

This is another recipe adapted from the Vegan Planet cookbook. The cookbook suggests serving the patties with three-fruit chutney. That’s not available for Martin, but I find that either homemade cilantro-coconut chutney or else a cilantro-avocado spread make a nice alternative. Another variation is to dice fresh curry leaves (if you can find them) and sauté them with the squash, then decrease the curry powder accordingly.

olive oil
1/2 cup minced onion (I substitute celery)
1/2 cup lentils, pre-soaked
1 cup diced butternut or acorn squash
1/2 cup raw almonds, pre-soaked
2/3 cup sunflour (or sesame seeds, soaked and dried)
1/4 cup minced parsley leaves
2 tsps curry powder
1/2 tsp salt
1/8 tsp cayenne (I leave this out)

Cook the lentils and drain them well. Bake or sauté (do not boil, because it makes the patties too wet) the squash until soft. Heat a spoonful of olive oil in a frying pan, add the onion, cover, and cook five minutes until soft. Transfer the onion to a food processor, leaving as much oil as possible in the frying pan. Add the remaining ingredients to the food processor and process until smooth. Form into patties, about ½-inch thick. Add some more oil to the frying pan and fry the patties until browned on each side.