Category Archives: Mistakes

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

Posted on by findingmykid
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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.

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

Posted on by findingmykid
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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.

Shortcomings

Posted on by findingmykid
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Shortcomings. I have them.

Martin and I are headed to Chicago on Sunday. We have a Monday morning appointment to see his excellent Track Two doctor. This afternoon the doctor’s nurse called and said that they are missing blood results, some testing we were supposed to have done. I remembered that I never had the testing done. The prescription form was attached to paperwork that I turned over to Adrian to seek insurance reimbursement. By the time I went looking for it, the prescription had disappeared. And then the whole thing slipped my mind. I suppose I thought maybe the doctor would … forget that she prescribed this blood work for Martin? Of course, she didn’t.

The Big Imposing Hospital sent me a notice recently, too, inquiring about the blood testing the geneticist wanted. I don’t feel so guilty about that one; the geneticist said there was little chance that we would learn anything from blood work. Still, I should have had it done. I could have had LabCorp draw the blood at the same time as the blood for the Track Two doctor. My bad.

And then there’s the lipase. It’s been in Martin’s supplementation/medication schedule since our last visit to his Track Two doctor ten weeks ago. I was supposed to start giving it to him two weeks after that visit. (We “ramp up” to new supplements.) I waited the entire two weeks before I went looking for a compounding pharmacy that could fill the prescription. I had no idea how to find a compounding pharmacy, and by the time I finally woke up and asked Kathleen Reily for the name of one, the lipase prescription too was gone. Poof! Someday perhaps I’ll find it behind a heat register or under a cabinet in my home office.

So much gets done. I’ve promised not to beat myself up for what doesn’t.