Take Heart. There Is Also More Than I Can Manage

It’s been seven years since we began biomedical interventions aimed at recovering Martin from autism, and though I always wish wellness would hurry up and get here, overall I am pleased with our success. Last semester we had a CSE meeting with our school district and, at our request, reduced the special-education services Martin receives. With newfound social awareness, Martin has grown resistant to being pulled so often from his mainstream classroom. We decided that we can still meet his needs even without physical therapy (taekwondo helps) or resource room (we’ve hired a reading tutor instead), and we’re cutting speech therapy from three sessions per week to two. Outside of school, Martin recently had a successful play date with typically developing twins, albeit 17 months younger than he is. Progress, progress.

How have we reached this point? Through utter, over-the-top lunacy. By my leaving my law-firm job to work on Martin’s recovery. By moving out of New York City, and into a house adjusted to meet his needs, from electromagnetic-shielding to environmentally sensitive paint. Through a variety of specialty and highly restricted diets, all home-prepared and as organic as possible. With homeopathy and, early on, homotoxicology. Through large medical bills (on top of pushing the limits of our insurance) for a team of MAPS(-ish) practitioners, an LLMD, geneticists, traditional and nontraditional allergists, developmental optometrist, neurofeedback practitioner, HBOT therapist. By insulating Martin from the commonplace, like fluoride, chlorine, harsh cleaning agents. On the non-biomed side, through special-education settings, hippotherapy, social-skills playgroups, a psychologist. And of course, by summer relocation to Nicaragua.

From the beginning, I have had to acknowledge the privilege inherent in what I can do for Martin. We are a two-parent family with one child. Adrian’s income as a law-firm partner made it possible for me to stop working and focus on Martin, and for us nevertheless to cover the expense of biomed. We live in an area rich with resources. Adrian himself believes in the biomedical approach. While he may select restaurants without enough regard for Martin’s restrictions, or plan trips that make it difficult to adhere to our supplementation routine &c., he never questions my research or seeks to undermine.

What we do for Martin appears extreme, to a good many folks, and that’s okay. It is extreme. I’ve always said I would do anything necessary for Martin’s recovery.

Yet, more and more often, I encounter parents who do more than I do.

Example: Parents who homeschool. That’s not happening for us. I love Martin and cherish our time together, enough so that—other than cooking—I get nothing done when we’re together. I need the six-hour break when he’s in school. I need the time to work, to shop, to research, to order supplements, to breathe.

Example: Parents who truly master the science behind medical challenges and recovery. When my family makes a big decision like medical marijuana, I try to do a lot of research. I read summaries and abstracts and, where necessary, delve into scholarly articles—which is tough. I’m no good at the science component. I’m forever amazed by parents who seem able to answer extremely complicated questions of physiology or neurology at the drop of a hat. Perhaps they were doctors in their pre-autism lives. Or perhaps they just managed to complete something more impressive than “Chemistry for Non-Science Majors,” which was the class through which I fulfilled my core science requirement in college.

Caveat: One could argue that anything biomedical we do with Martin is a “big decision,” because anything has the potential to affect his health short- or long-term. True. On the other hand, my anxiety is satisfied with comparatively less investigation when it comes to, say, Vitamin C supplementation than when it comes to, say, chelation.

Caveat: There are also plenty of parents in my on-line groups who, even to my weak eye, get science and even basic facts wrong. I wasted time one evening explaining why the statement “All soy contains GMO estrogen” was untrue (in varying ways). Another occasion, I spent hours trying to track down the source of a statistic about MTHFR mutation and autism that was being thrown around as gospel. I failed, even after looking through all eight articles in the medical journal to which the statistic was vaguely attributed.

The core point is this: In the event anyone feels disheartened because s/he can’t manage what we do for Martin, know that I too become disheartened by what others manage that I cannot.

Martin needs more detox support. For detox support, he takes a few herbal remedies, does a detox bath (two cups Epsom salt, half a cup baking soda, and essential oils) several times per week, and when we have time, sweats in our infrared sauna. But he needs more. I can tell because he becomes silly and inattentive (behavior I associate with detoxing) at certain times each day, usually when his antimicrobials are taking effect. So I went searching for a supplemental detox protocol and found a post, from the excellent blog Regarding Caroline, titled, “DETOX the Die-off and feel amazing again! [our roadmap to success].”

Call up the post, if you have a minute. Read through, past the various strategies of castor oil packs, dry brushing, &c., down to that part subtitled Our Daily Detox Routine. It’s amazing! Herx water and lymph drainage massage before breakfast, cytokine and lymphatic supplements mid-morning and early afternoon, foot bath during dinner, dry brushing before shower, more lymph drainage massage in bed, so on, so forth. Martin would undoubtedly benefit from that type of detox routine. So much detox might eliminate silliness altogether, which would help so much with social skills; just this afternoon, Martin said to me, “I know I shouldn’t laugh at jokes from inside my head when I’m with friends. I can’t calm my body and control the laughing!”

So Martin needs a routine like that.

But—

But I—

I came away from this post feeling, I imagine, the way an autism-recovery newbie might feel after some time on Finding My Kid: What? How? How could I possibly do all that—do anything close to that—on top of the day-to-day grind I already endure? Martin attends school; we’ve established that. He has at least two activities after school every day, which include taekwondo practice, music lessons, psychologist appointments, social-skills playgroup, reading tutor. Then there’s homework (which still takes inordinately long, given his attention issues), trombone and drum practice, (now) chess practice, half an hour of iPad time (as a reward for completing everything else I just mentioned), dinner, two snacks, and school-mandated 20 minutes of reading before bedtime. We do his pills and drops at wake-up, breakfast, immediately after school, before dinner, during dinner, and at bedtime. When the dry brushing? When the detox supplements, which must be separated from everything else?

You may be thinking, hey, why not drop a few activities? I would love to. Here are examples of my excuses and counter-proposals:

  • The most cumbersome activity is taekwondo, which Martin does five times per week. He would attend seven times per week if the lessons were available. Most kids attend two or maybe three times per week. We indulge Martin’s habit because (1) taekwondo is one of the few activities that excite him, and (2) even coming twice as much as other kids, he still has trouble keeping up with them, and every time classmates have the opportunity to pass a belt and Martin doesn’t, the experience pains him.
  • His music lesson is a combined once-weekly trombone and drum lesson. He wants to join the school band next year, in fourth grade. He’s been at the trombone lessons for two years, and he isn’t very good. Last fall he asked to change to percussion. We don’t like him hopping around on a whim, so we allowed percussion only if he also stuck with trombone. Then he showed a knack for drums and immediately became a better percussionist than trombonist. If he’s going to succeed in band, drums are probably the key.
  • Chess is a new activity, at my urging. Our community has an active chess program for elementary kids, and I’d like to have Martin involved in at least one quiet, thoughtful activity with peers. The participants, however, have by and large been playing for a while, and Martin needs to catch up, so I have him taking a lesson once a week and practicing the other days. If I can’t have a hockey player, darn it, I will have a chess player.

The truth is, I would rather keep Martin busy. We still don’t have many play dates to speak of, and when he’s not busy, he’s whining for an iPad or for me to entertain him. Of course he needs to develop the skill of entertaining himself, but at least until he can read for pleasure, we probably aren’t there yet.

So there you have it. There are, indeed, parents who do more for their kids than I do for Martin. Far more—even excluding the subset of parents who must do more because their children are extremely high-need. I, too, become overwhelmed at the thought of all I should be doing.

I hope that a parent who reads Finding My Kid and thinks, “No way!” might nonetheless think also, “Okay, part way. I can do some of that.” So that’s the course I took. I analyzed the Regarding Caroline suggestions, took what seems do-able for us, and came up with a Martinized protocol:

  1. We will do a foot bath during iPad time at least four days per week. I prefer Martin to be seated at a table for iPad time in any event, because otherwise he hunches and puts his face too close to the screen.
  1. We will attempt dry brushing Saturday (or Sunday), Wednesday, and Friday. Those are the evenings when we tend to be less rushed.
  1. I will add herx water before breakfast and after school.

That’s it. Those are the suggestions I think I can manage.

And, mind you, the list is aspirational.

I Want to Lick You

A provocative title for a blog post, right?

Don’t get too excited. The post isn’t nearly as provocative as the title. It’s about people perceiving Martin as weird.

Especially when Martin is detoxing, or when a treatment has “stirred up” viruses or parasites or metals, &c., he engages in strange behaviors. Last week Martin accompanied me to an AT&T store. While I sat talking with an agent, Martin rolled on a padded bench, threw himself on the floor, and tried to bury his face in my lap. In an instant of distraction, I felt something wet and realized Martin had lifted my shirt and licked my back. Hoping the agent hadn’t noticed, I pulled my shirt down and whispered, “Martin, don’t do that!”

Martin shouted, “I want to lick you!”

When Martin was younger and more impaired, situations like “I want to lick you!” were easier to endure. Back then, I think people recognized that something was going on with Martin, which made odd behaviors understandable. Plus, the smaller the child, the crazier the utterances, right?

Now, Martin is eight years old, and appears maybe a bit older—physically, he favors my six-foot-three-inch brother, Eddie—and responds to questions and speaks in sentences. Relatively few people, I imagine, realize on first acquaintance that something is going on, so now it is all the more unsettling when detox behavior prompts him to broadcast, in public, “I want to lick you!”

Adrian and I are shopping for a new SUV. My darling husband is highfalutin, so we are test-driving luxury models. Monday Martin accompanied us on one such expedition. Monday also was Martin’s worst day in ages; his teacher reported that Martin laughed inappropriately throughout the day and repeatedly disrupted class, his personal trainer said Martin was too distracted to participate in the exercises, and Martin staged a mini-meltdown when told that we’d be going car shopping instead of home to watch television. Still, it didn’t seem like that bad of an idea to take him along.

Until Adrian and I, with a saleswoman by our side, turned around to find Martin, all 65 pounds of him, half-laughing and half-crying, sprawled across the hood of an $85,000 Porsche.

As the Dead tell us, every silver lining has that touch of gray.

New Year!: We Met One of Adrian’s Colleagues for a Drink

New Year’s Eve, for our après ski, we met one of Adrian’s colleagues at a distillery. This particular colleague, like most, doesn’t know our son has autism, and whereas the colleague has typically developing children in the same age range, he would be able to spot any differences. We didn’t want Martin to “stand out.”

One way Martin still stands out is ordering food. When we are in a restaurant, he likes to order by himself. That’s fine, if we are in a restaurant whose menu we already know. When we are in a new restaurant, I have to ask eight million questions. The hamburger—is that just ground beef, or is the beef mixed with bread crumbs? The sweet potato fries—do they have any breading or coating? What kind of oil are they fried in? What else is fried in that oil? The grilled calamari—could we get that without the garlic butter? And the whole time I’m asking, Martin interrupts, usually to yell what he wants: No, no! I can get the calamari! Can I get the calamari? I don’t want salad! Occasionally he also has a mini-meltdown over what’s available (or not available) for him to eat, in which case I take his hand and lead him outside until he calms down.

So we were glad to arrive twenty minutes before Adrian’s colleague, have a chance to peruse the menu (the colleague suggested the location), and come up with the best option, both nutritionally and in terms of avoiding a meltdown. By the time the colleague joined us, Martin was occupied with my iPhone while happily downing a grass-fed steak and French fries cooked in canola oil.

Wait. Potatoes? Canola oil? Do we allow Martin to eat potatoes and canola oil?

Generally speaking, we do not. Potatoes are an occasional summertime treat, organic and roasted on our outdoor grill. Canola oil almost never works. Most canola oil comes from genetically modified crops, and even non-GMO “Canadian oil” is refined (hexane-processed?), bleached, degummed, deodorized rapeseed oil in which omega-3 fatty acids have been turned into trans fatty acids. Why would I let Martin ingest that?

Well, because we were traveling, and when we travel, and encounter new situations, and have to “perform,” some restrictions loosen. A bit.

Traveling, depending on where we go (for example, I can do more at my parents’ in Texas than I can in a suite in Chicago), alters:

  • Diet, to a modest extent. Martin’s diet is always free of gluten, dairy, soy, corn, and refined sugar. Beyond that, some specifics slip, including the aforementioned potatoes and canola. It can be hard to ensure organic food, or even non-GMO. He might also miss a day or two of broth. We traveled to Utah on a Saturday. He went without bone broth Saturday, Sunday, and Monday. By Monday afternoon I’d got my hands on a marrow bone and simmered a pot of broth.
  • Cookware. Even at home, my cookware isn’t perfect. Stainless steel remains puzzling, in terms of purity, and I’m never sure if my cast iron is seasoned properly or clean. In any event, at home I cook with All-Clad and cast iron, with mostly stainless-steel or wooden utensils. Whenever we travel, we rent accommodations with a kitchen, and unless we are staying long enough to justify a purchase—for example, when we were in Europe for ten days and I bought a fine strainer and a pot, both of which I brought home—I use what comes with the place. That might mean a plastic spatula, or even, egads!, nonstick pans.
  • Detox baths. At home, Martin takes two or three detox baths (two cups Epsom salt and one-half cup baking soda) a week, depending on whether he’s also used the sauna. Epsom salt is heavy to carry, and I don’t always trust other bathtubs. What product was used to cleaned it? Could I rinse it well enough? There is no point in trying to detox Martin in a tub with excessive chemical residue.
  • Exercises. Right now, we don’t have HANDLE exercises to do. Martin does, however, have four short exercises per day for his vision/neuroplasticity. At least, he has four short exercises when we are not on the road.

We do have absolutes, stuff that doesn’t change, regardless of where or when we travel. Martin takes his supplements, always. I’ve handed him pills in rental cars, measured drops at airport gates, mixed powder into restaurant beverages. I also find him fermented foods, daily, wherever we are. Martin no longer takes probiotics, so fermented foods are his probiotics. Plus, it’s easy enough to find sauerkraut or another cultured vegetable these days, if not kombucha.

The last absolutes? Love, and plenty of attention. Martin always gets those.

No Yeast?

Poor yeast, gets all the blame.

I posted yesterday that Martin is in Symptomatic Itchy-ville, and that a yeast imbalance is to blame.

We made it to the doctor appointment (an hour late, with that “patchy fog” to thank), and the doctor thinks Martin’s sandpaper skin looks more like massive detox than yeast overgrowth. To the credit of this theory, we entered Symptomatic Itchy-ville right around the time last month when we reached full dose of takuna, a detoxifying agent.

That’s Martin’s way: His digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates. One thing good, one thing bad.

Isn’t that just like our life right now? Martin skips and perseverates and self-stimulates by running laps. He’s grouchy; everything is a tantrum. He was up, in our shared hotel room, from 2:00 am-5:00 am, laughing hysterically in detox mode. (I know he wasn’t actually drunk. I made him carry a jug of drinking water into the hotel last night, a Herculean effort that left no little hands free for smuggling alcohol.)

Those challenging aspects make it easy to overlook the good that’s happening. In the doctor’s office yesterday, Martin jumped on the trampoline higher and with more coordination than ever. He jumped in circles and announced, “I’m jumping in circles.” When he was trying to fall asleep last night—late last night—he called from the bedroom of our hotel “suite”:

“Mommy!”

Parked on a sofa in front of the ChiefsSteelers game, I responded: “I’m eating dinner, Martin. Go to sleep.”

“Maybe later you’ll come to bed and shut the bedroom door.”

I’d left the door between the bedroom and main room ajar, so Martin wouldn’t be scared. I called, “Do you want me to shut the door now?”

“No. Maybe later.”

It might not sound like much, but that’s a conversation, or the beginning of one, in any event.

We’re surviving the not-so-good because there is also good.

And maybe because it’s not yeast. I’m not sure I have the strength for another full-out war on yeast.