Category Archives: Process

It’s the First Day of Special-Education Preschool. Martin Is Not Ready to Graduate

Posted on by findingmykid
11

Martin started his new school today. His fellow students are very high-functioning. Three-quarters of them I would have assumed to be typically developing, had we met in any setting other than a special-education preschool.

Adrian, my mother, and I all delivered Martin to his teacher. Adrian snapped a dozen pictures. We left one at a time: my mother, then Adrian, and finally I. Martin protested mildly when I left, a few Mommy whimpers. I thought the parting went well.

He’s in a 12-student, one-teacher, two-assistant (“12-1-2”) classroom now, for five-and-a-half hours per day. That’s a big jump from his former school, where he participated in a seven-student, eight-teacher group two hours daily. His old school recommended an 8-1-3 class for this year, based on his difficulties with “attending” in a group setting; we reached to get him placed in the more advanced 12-1-2.

I returned to pick him up this afternoon and asked the teacher how Martin’s day had gone.

He did well, she responded, her tone even and unenthusiastic.

“I perceive some hesitation?” I inquired.

He had some trouble with transitions, she owned. She expects that to lessen as Martin learns his new routine. (Transitioning is moving from one activity to another. We’ve made progress in that area, but Martin still might tantrum when ending activities he enjoys, such as music.)

I decided to push. “How was his attending?”

He did need to be redirected throughout the day, the teacher said. Attending is a skill they will be working on all year long.

I walked away from the conversation disappointed. What I had fancifully longed to hear was an implication that Martin performed so well in the 12-1-2 classroom that he would probably soon be ready for a 15-1-2. What I had thought was realistically possible to hear was that Martin belongs in a 12-1-2 classroom and is up to snuff.

What I instead read into the teacher’s words was a suggestion that Martin may not yet be far enough along to keep up with the highest-functioning special education kids.

That was hard.

My rational side sees that it’s silly to think a first-day analysis can predict the year. My hopeful side believes that wherever Martin is now, he will continue to improve.

But my fragile side, the side that autism has left naked and raw, is wounded by the acknowledgment of Martin’s current shortcomings, even if I know them myself.

A few minutes after I spoke with Martin’s teacher, the school’s director of admissions, who was mingling with parents making first-day conversation, approached me and asked how I was feeling.

Martin had some trouble transitioning, I responded.

“Of course he did. They all do the first day,” she said.

And his attending still needs work, I said. At this point something in my manner must have signaled my frustration, because the director switched to a tone of voice both matter-of-fact and consoling.

“Oh, but you knew that,” she said. “You know his attending needs work.”

It’s true. I know. I know that we have far to go.

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

Posted on by findingmykid
2

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

Posted on by findingmykid
11

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.

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

Posted on by findingmykid
3

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

Posted on by findingmykid
2

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

Posted on by findingmykid
2

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.