Author Archives: findingmykid

New Year!: We Zipped by a Whole Foods Market

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There are times when I should trust my instincts.

Remember when I thought Martin was having a yeast flare, but went with the plan of his his doctor, who didn’t think yeast was the issue?

I was right. Yeast was the issue, and by not addressing yeast directly and immediately, I let it get worse. By four days into our Utah trip, Martin’s skin was a mess. That’s his “tell,” for candida. He gets a mild rash on his legs and belly, which spreads to his arms and backside as he scratches and scratches until he’s covered with bloody nicks. It’s awful. December 30, though we rubbed balm from head to toe, Martin could not stop scratching, and I was washing little spots of blood off his sheets and clothes.

I messaged his doctor, attaching photos. She agreed that we needed to take immediate anti-yeast measures and suggested Martin go back on Candex. This time, I supplemented her opinion with my own and decided to kickstart the new treatment with two weeks of Candidase.

. . . Which explains why, New Year’s Eve, after getting up late and skiing and meeting Adrian’s colleague for a drink, I insisted on driving to the Park City Whole Foods Market for Candidase and Candex.

As I wrote this, one week after New Year’s Eve, the situation has improved dramatically. Candidase works best on an empty stomach, so each night after 10:00 pm, I slip into Martin’s room and give him two Candidase capsules, which he swallows without waking. I do the same thing before 6:00 am, and he takes a third dose immediately after school. For the time being, I’ve cut the already sparse grains from his diet, and tried to further limit natural sugars. Last Sunday, just after we returned to New York, I baked semisweet spinach brownies, which are nut-free (appropriate for school snacks) and better than they sound.

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Whenever possible, I’ve been substituting those for the Lärabars Martin loves, which are healthy but, because of the dates, high-sugar, at least by my standards. Instead of a (grain-free but still sweet) baked good like banana bread, Martin has been eating vegetable omelets, sometimes with turkey bacon, for breakfast.

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Martin still scratching, though much less. His belly looks good. His arms and legs are beginning to heal again. He is comfortable.

Honestly, I am disappointed that Martin has had yet another yeast flare. I had hoped that, by this time, his system would be healed enough to keep candida in check.

But who’s got time for wallowing? I’m in battle.

 

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

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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.

New Year!: We Skied

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Yes! We skied! Martin skied! We all skied together!

Both 2013 and 2014, we spent winter break in the Florida Keys. This year I decided to try something different. Adrian, who grew up skiing the Andes, loves to ski. Apart from working with his personal trainer, skiing is actually the only sport in which he participates. (He watches soccer, football, tennis, and—because I force him to—ice hockey.) I’ve been hoping to get Martin involved in skiing also, to give him and his father a special activity to do together, and us all an activity to enjoy as a family. Until now, I haven’t had the confidence Martin could ski, with his clumsiness, low muscle tone, and tendency to tire easily. Plus, Martin has such a short attention span. I had hesitations about allowing him to participate in a sport in which even a momentary concentration lapse can spell peril.

Nevertheless, as Martin continues the hard slog toward recovery, we owe it to him to offer new experiences as they become manageable. This September, Martin started skating lessons, in (my) hopes that he will be soon ready to play ice hockey. He was able to learn to skate, and so it was time to give skiing a try. To boot (boo! hiss!), one of Adrian’s colleagues graciously offered us his vacation house in Park City, Utah, which happens to be home to the National Ability Center.

Readers, you know that I don’t market my blog to advertisers and rarely make endorsements. What works for one child may not work for another. For this post, I have to make an exception. I cannot say enough about the National Ability Center, an organization dedicated to bringing outdoor sports to everyone, regardless of physical or other challenges—to “empower[] individuals of all abilities by building self-esteem, confidence and lifetime skills through sport, recreation and educational programs.” We booked Martin for a full week of lessons: three morning lessons, and three full-day lessons.

We arrived Saturday evening, the day after Christmas. Sunday morning was the first time Martin ever wore ski boots.

Monday after lunch, Adrian and I watched Martin ride a chair lift with his instructor. Monday evening, Martin informed me that “once to Utah was enough,” that he did not like skiing, and that he desired never to return. I chalked these sentiments up to his discovering that learning to ski takes some work.

Tuesday afternoon, Adrian and I participated in the lesson, skiing right and left of Martin as an instructor coached him to make turns and alternate high-fiving each of us.

Wednesday afternoon, Adrian and I skied alone with Martin for the first time. We were nervous not having an instructor along, and we probably shouted too many directions, but we made it work. We rode a regular chair lift and came down a green-circle “easy” trail, and then Martin, though he was obviously freezing and had fallen several times, insisted that we make a second run.

Thursday morning, we delivered Martin to his morning lesson late, because of his trouble sleeping the night before (see “We Got Up Late Because Martin Had a Tough Night”). It could have been a disaster day, but it turned out great. Thursday afternoon, Adrian and I ascended to mid-mountain with Martin and his instructor, and all four of us skied together. We made two long runs, and the instructor gave me and Adrian pointers on coaching Martin ourselves.

Friday afternoon, Adrian and I took Martin to mid-mountain and skied a still-green-circle yet nevertheless more challenging trail that we had tested that morning. We let Martin go, with minimal coaching. At times I couldn’t believe my eyes. Martin was wedging (snowplowing), to be sure, but I saw the beginnings of parallel turns and even hockey stops. (The instructors opined that Martin’s skating lessons were an asset.) Martin weaved through other skiers with confidence. He fell rarely and, when he did, picked himself up if he was able. Despite difficult conditions, including 9-degree weather and blistering wind, he wanted to make several runs. We left the mountain, over Martin’s protest, when I became too cold to continue.

Each morning, those six days, Martin worked one-on-one with an NAC instructor, sometimes also with a volunteer assistant. He had various instructors; they shared notes with each other, and followed up with us as possible. Had I not witnessed Martin skiing as I did, I might not even have believed the reports I received: Several instructors praised Martin’s strength. (Low muscle tone does not equate with lack of strength.) Two instructors used the word “athletic.” (Whereupon I jokingly promised Adrian a paternity test—Adrian being admittedly un-athletic.) The Thursday and Friday instructors expressed surprise that this was Martin’s first week skiing. Every morning after the first, the staff greeted Martin like an old friend.

At the NAC I saw so many students with challenges, minor or severe, physical or otherwise. Everyone was treated with respect, and without coddling. Lessons through the NAC were expensive. They were, however, less than individual lessons with a regular Park City instructor, and they included additional volunteer support when necessary, a buddy pass if one of us wanted to ski along, a daily cubby, and overnight storage for Martin’s equipment. Best of all, they got Martin skiing with confidence. Adrian has already planned a donation to the NAC in his charitable giving this year.

Friday evening, Martin informed me that he wants to return to Utah next year, and that he intends to keep skiing, forever.

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New Year!: We Got Up Late Because Martin Had a Tough Night

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Happy New Year!

Adrian and I didn’t make it till midnight, New Year’s Eve. Didn’t even try. We were in bed by 9:00 pm, in a vacation house in Park City, Utah. On New Year’s Eve, our family (1) got up late because Martin had a tough night, (2) skied, (3) met one of Adrian’s colleagues for a drink, and (4) zipped by a Whole Foods Market. From each of those four activities gives me a heading for a “Martin right now” mini-essay. I’ll post them in four installments.

New Year! (1) We got up late because Martin had a tough night.

Martin is in treatment for Lyme disease. His LLMD wants to treat with antibiotics. His MAPS doctor, on the other hand, prefers to treat Lyme anti-microbially, which she says is as effective as antibiotics without the potential negative effects for gut bacteria. The LLMD and MAPS doctors have talked to each other. For now, the LLMD is letting the MAPS doctor “quarterback”—that’s the LLMD’s word, so catchy—Martin’s Lyme treatment, and we’re going with the anti-microbials.

I think they must be working, because while Martin’s cognitive and physical functioning are smooth, his adrenal levels seem maxed out. He is full of anxiety, looking for excuses to melt down. New Year’s Day, Adrian was listening to a Frank Sinatra song when Martin started crying because he remembered that the song was recorded before his parents were born. Honestly. Martin was playing a video game, heard the song, and burst into tears. The only reason he gave was the date that Frank Sinatra recorded “I’ve Got You Under My Skin,” and it took several minutes of comforting to soothe him. If that’s not adrenal stress, I don’t know what is.

Autism and even, to some extent, healing cause stress. Sometimes the process of getting better means that Martin’s body hardly knows itself, or what is coming next. The body can react by producing excess adrenal hormones, like dehydroepiandrosterone (DHEA) and cortisol. The hormones cause meltdowns. The overall stress diverts blood flow away from the gut, affecting nutrient absorption, which pressures the pancreas to keep up with digestive enzymes. The stress also stimulates the liver to increase glucose production to feed the muscles—and I think you know what mayhem excess glucose can wreck in an ASD kid.

Martin is also exhibiting increased OCD symptoms, which for him accompany adrenal stress. His current obsession is making sure he sees a digital clock anytime the digits are all the same, i.e., at 1:11, 2:22, 3:33, 4:44, 5:55, and 11:11.

These factors—adrenal stress and compulsions—have affected Martin’s sleep, too. In “Curse the Night,” I described how Martin couldn’t sleep Christmas Eve because of his anxiety that Santa Claus might not come. In the night between December 30 and New Year’s Eve, Martin woke from a nightmare: I think it was about skiing (see next post), because he woke exclaiming, “No, no, not so fast!” He stayed awake from 2:30 am until after 5:00 am, declaring himself simply unable to sleep, asking for me to be with him, and worrying about the time—“It’s 3:12! It’s not 3:33 yet!”—until finally I hid the clock.

Night waking has been so rare this past year that nowadays it really throws me for a loop. I just don’t have the stamina to get by without sleep anymore. I dozed off, lying on the sofa, until Adrian’s alarm sounded at 6:00 am, our usual waking time for skiing. Then I told Adrian that Martin had been up for hours and was now asleep, set my alarm for 8:00 am to call his ski instructors and say he’d be late for his 9:00 am lesson, and crawled back into bed for a couple hours. We let Martin sleep until after 9:00 am, then ate a big breakfast and finally reached his lesson at 11:00 am.

Martin remained high-strung all day, and does still as of this writing.

(I will provide more information on the Lyme disease in a subsequent post. I am almost as excited about writing that as I was for the recent informative post about mitochondrial support.)

Curse the Night

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Christmas Day, 1:30 am.

I lie, awake, next to Martin, in his bed. He too is awake. Christmas Eve he went to bed about 8:30 pm, eager to get to sleep so that Santa could come, and dropped off immediately. Adrian was seeing Star Wars: The Force Awakens with my father and brothers, so I had time to finish wrapping gifts and even bake some ginger spice cookies, which turned out terrific. I thought about updating my Facebook status with some ditty about the peace and tranquility of Christmas Eve.

At 11:40 pm, just as Adrian and I had gone to bed, Martin woke. Night waking, like bedwetting, is so rare nowadays that I can’t remember the last time it happened. Martin can still take a while to fall asleep, but once he does, he’s out till morning. Tonight, he called out, saying he thought he saw it getting light outside, and asking whether Santa had come. I told him that it wasn’t even midnight yet, and that he could go back to sleep.

He hasn’t gone back to sleep. He is so concerned with getting back to sleep for Santa Claus that he’s worked himself into an anxiety attack, crying and wheezing. Adrian spent some time trying to comfort him, to no avail. Since 1:15 am, I’ve been here, in Martin’s bed, soothing him, hoping for sleep of my own, wondering what Christmas Day will be like when I’m exhausted.

Here’s the thing about being awake in the middle of the night: When I’m lying in the darkness, all my fears grow. Every single fear. From work deadlines to household finances to body image—they get worse. Problems loom insurmountable. I think about this issue and that issue, this concern and that concern, until finally I crash into the unmentionable fear: that if Martin never recovers fully, this will be my life forever. Autism will be my life forever. There will never be a time when my child achieves independence. There will never be a time when I can turn back to my non-Martin goals, to what I want to achieve for me.

Why do I call that fear “unmentionable”? Because it is selfish. Because it borders on blaming Martin for my own shortcomings. Because it affixes my personal journey to factors that depend on Martin but over which he has no control. Because my official position is that Martin will recover fully, and it’s only in the wee hours that doubt makes inroads. It’s only when I want to be sleeping, or reading, or writing, or even working, or anything other than lying next to a boy who can’t stop fidgeting, crying, laughing—only then do I think, “What if he’s done getting better? What if this is as good as it gets?”

It’s just better not to mention it.

Christmas Day, noon.

I must have dozed off, in Martin’s bed, sometime after 2:00 am. I woke at 3:50 am to find him asleep, finally, and then I returned to my own bed.

I woke again at 7:45 am, to the breathtaking melody of Martin, down the hall, conversing with my father, who is visiting. (Yes. Conversing. Answering questions and asking them in turn. How old are you, Poppa? That’s old. I’m seven. What year was it when you were seven? Grandma was already born then. Are you older than Grandma?) We had left one special gift unwrapped by the tree, and Martin played with that until everyone was up and ready to open gifts. Once all the gifts were unwrapped, Martin asked:

“Is there another gift to me from Santa?”

I realized right away what he wanted. The trombone. When he’d made his Christmas list, he’d included a trombone. At the time, the trombone seemed no more desired than the other gifts, most of which he received. In the day or two before Christmas, long after all gifts had been purchased, the trombone acquired new gravitas. Martin began to speak frequently of the trombone Santa was bringing him, and how he planned to learn to play the trombone, and how he would become good enough to play in a marching band by high school. Trombone, trombone, trombone. But seriously, I was not going to interrupt all other plans to procure a toy trombone.

“No, honey. I think that’s all that Santa brought you.”

Martin started to cry. “‘You get what you get?’ You just get what you get?” He was quoting our pastor, who upon assigning parts for the Christmas pageant had told the kids, “No complaining. You get what you get.”

I conveyed to Adrian why Martin was upset—I mimed playing the trombone—and Adrian moved in to comfort him, explaining that Santa might have thought that he is still too young to learn the trombone and needs to wait another year.

And then—Martin pulled it together. He was still upset, but he stopped the tears and moved to pouting and whining instead. No full-blown meltdown. No screaming. He asked, “Santa thinks I’m too young? Maybe next year?” All in all, the response seemed more age-appropriate than autism-indicative.

It’s noon now. Everyone has eaten a special Christmas breakfast, which was gluten-free French toast with cranberry compote. Martin played with his new gifts (he’s favoring a set of Beatles figures, and also a “play the trombone” app I downloaded hastily to his iPad) and then accompanied Adrian to the gym. My brothers are playing backgammon. My father is napping. The house is quiet. I’m starting to prepare Christmas dinner: cannellini-bean latkes, roasted Brussels sprouts leaves, and quinoa pilaf. Last night’s fears are last night’s fears.

I’m thinking about updating my Facebook status with some ditty about the peace and tranquility of Christmas Day.

I Promised an Informative Post About Mitochondrial Support. Sigh

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I tell myself often that I should be writing less about Martin’s breakthrough performances and more about the process of biomedical recovery and homeopathy: what his blood and urine test results show, which supplements we’re using, how antimicrobials are affecting chronic Lyme disease, how I’m tweaking his diet and why.

Recall the correspondence I had with Martin’s biomed doctor about the hyperactivity Martin was experiencing. I guessed that the culprit might be a yeast resurgence. The doctor thought we were too quickly increasing borrelogen and banderol—hose are antimicrobial herbs we use treat Lyme disease and bartonella, a common Lyme co-infection—without enough time for Martin’s body to adjust. She suggested that we go off banderol temporarily, and that we build the borrelogen more slowly. Relevant to this post, she also wrote, “Please start the other mitochondrial support as we discussed, as the supplements should help not only ‘floppiness’ but also his ability to handle the anti-microbial herbs.” (She was responding with my terminology. I’m pretty sure that “floppiness” is not a real medical term.)

At the time, Martin had been off target mitochondrial support for a few weeks; we use MitoSpectra, and I was unhappy that our supply of pills had gone bad. I looked into MitoSynergy but decided against it, because its components did not seem to be in bioavailable form, e.g., it has standard B6 instead of p-5-p, and folic acid instead of 5-methyl folate or folinic. I also thought about giving Martin the mito-support elements separately: levocarnatine, CoQ10, B-complex. On the other hand, Martin takes so many pills and drops already. Where possible, it reduces the protocol burden to use combined forms, even if the combined forms tend to be more expensive. And blah blah blah. Meanwhile, Martin was off mito support while I mulled all this.

MitoSpectra’s customer support offered to replace the spoiled pills and told me to keep the next batch refrigerated to prevent them from going bad. After speaking with the biomed doctor, I decided to put Martin back on MitoSpectra. I expected that the mito support would improve Martin’s “floppiness.” I was less certain why the doctor thought that it would help with hyperactivity and overload from the antimicrobials.

It did. Immediately after speaking with the doctor, I took Martin off banderol and reduced borrelogan to just one drop, to start building again from there. That helped. Slight hyperactivity lingered, as did trouble falling asleep, and I worried about starting to build borrelogan again, however slowly. Then the new MitoSpectra arrived, and within a day Martin’s behavior leveled off.

Why? Even after five years of biomed, during which I’ve known that Martin has mito processing issues, I still don’t fully understand how the mitochondria fit into all aspects of Martin’s health. I associate Martin’s mito issues with his lack of energy and low muscle tone; in the earliest days, before biomed, Martin spent continuous hours lying on the floor, usually on his side, usually pushing a toy back and forth or engaging in some other repetitive behavior. We’ve remedied that, and made progress on floppiness and exhaustion. Yet mito issues continue sprinkling their special mischief over Martin’s progress.

Mitochondria organelles are the power plants of human cells. Their job is to turn oxygen and sugar into adenosine triphosphate (ATP), the energy that powers the cells to do their assigned jobs. Mitochondrial disorders, as I understand them, can be extraordinarily serious and can result in complications ranging from undergrowth and developmental delays to seizures. Conventional medical wisdom holds that mitochondrial disease, in the true form, is genetic and incurable, though treatable in ways that may assuage its effects.

According to the CDC, “More research is needed to find out how common it is for people to have autism and a mitochondrial disorder. Right now, it seems rare.” The CDC’s page, I note, has relatively little information about mitochondrial disorder, and much of that limited space is devoted to autism (and, you guessed it, vaccines). The CDC’s need to deny an autism-mitochondria connection makes me suspect that the question is being asked often, and a link in fact is suspected. TACA calls the role of mitochondrial function “[o]ne of the most exciting areas of research in autism spectrum disorder.” Even Autism Speaks (hardly cutting-edge science, in my opinion) offers: “Over the last decade, there has been great interest in the possibility that mitochondrial disorders may underlie some of the symptoms of autism spectrum disorder (ASD). Currently we believe that around 5 to 10 percent of children with autism have mitochondrial dysfunction as the underlying cause of their symptoms.”

Martin has mito dysfunction. That is diagnosed. No question there. So what is the mito dysfunction doing? Why would it cause increased hyperactivity when he’s dealing with antimicrobial Lyme treatment? Maybe cells without a power supply can’t fight the antimicrobial effects like they should. Maybe mito dysfunction keeps the entire system in such precariousness that what should be a mole hill—launching the battle against Lyme—morphs into a mountain. Maybe Martin, even after he functionally recovers, will still need mito support. Maybe he won’t.

The reason I shy from writing about the process of recovering Martin, instead of the victories and setbacks, is fear of admitting how little I understand about that process. (Also, it hardly makes for exciting writing.) I am a humanities-type mom wading through science-y stuff. When I try to write the science, I perceive my own shortcomings.

As of today, Martin is off banderol and rebuilding borrelogen slowly. The hyperactivity has dropped, considerably. Emotional dysregulation, on the other hand, is substantial. Martin is anxious, and having meltdowns.

Despite the mitochondrial support.

Because—who knows?

The Way He Talks Now—It’s Just Really Cute

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Yesterday in the car, during a Bon Jovi song on the ’80s on 8 station—

Martin: “Apparently we’re going to hear some Phil Collins soon.”

“Apparently”?

Me: “How do you know that?”

Martin: “The announcer just said it, on the radio.”

I’d heard, vaguely, the announcer say something before Bon Jovi.

Me: “Oh, really? I guess you were listening better than I was.”

Martin: “I guess I was.”

I once had a child whose only language was echolalia, who could not independently string two or three words together. Can you imagine the joy in a moment like this?

Two songs later: Phil Collins.

Clapping. Whispering. Not Simultaneously

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I planned to write an informative blog post about the role of mitochondrial support, and how going back on MitoSpectra has helped Martin since last week. But now I’m excited by events at church and want to write about them instead. That other, more informative post will just have to wait. Sorry not sorry.

At children’s time this Sunday—after the Gospel, before the choir anthem—the kids were invited to come sit in the front pew, which was empty, because, well, it’s church. Martin dawdled, of course, and by the time he arrived, the other kids had packed the pew. Martin exclaimed, “I don’t fit!” The congregation laughed. We got him seated. The substitute pastor gave a talk that was too long for little kids, and kind of boring. Still, other than making some funny noises with his mouth, which is a stim he has when his adrenals are stressed (I think), Martin did okay, looking around and enjoying the front pew. Then, after the too-long talk, the substitute pastor asked the kids to stay put for the choir anthem. I got worried; music excites Martin, and I thought he might call out.

He didn’t. He listened as the choir sang “Soon and Very Soon,” a song he knows. It was the Andraé Crouch version, in a setting by Jack Schrader, and in the last stanza the choir began a slow clap. For me (I was tragically born without a sense of rhythm), it wasn’t an intuitive clap: not every beat, hard to hit just right.

Martin began to clap. Not to clap randomly—he started to clap along with the choir, exactly right, exactly keeping time with their slow, challenging clap. I was blown away. It’s long been a challenge to get Martin to keep time with anyone, whether walking, or talking, or running, or playing. Evidently, not anymore. Only one or two other kids clapped, so Martin had to watch the choir and take their cues. He succeeded.

That was enough to make my day. Later in the service, however, Martin delivered even more. His next feat came after communion. He’d already gone downstairs to Sunday school and come back up, carrying a picture. He’d drawn a marching band (that’s a favorite motif) passing in front of the church, and he wanted to point out the details. “This is a trombone, and look, here is the pastor watching them.” The time that Martin picked for his exposition was also announcement time, when the substitute pastor was recognizing birthdays and reminding everyone about the men’s breakfast group and charity gift drive, so I put my index finger to my lips and shhh!ed Martin.

Martin kept talking (predictable) but switched to a whisper. Martin has never whispered unprompted before, and he’s never been able to sustain a whisper more than a few words. Now he switched to a whisper and kept it going, sentence after sentence. The drummer was carrying his drum set, he showed me, and there was a tuba player, and here were all the people standing on the sidewalk applauding. Whisper, whisper, whisper. I didn’t try to shush him again. I ignored the church announcements and whispered back. We whispered an entire conversation.

Before the final song, Martin asked to take his snack and go to the common room, where we have coffee hour. I let him. After a minute he jogged back into the sanctuary. The choir was exiting, down the center aisle. Martin stood just inside the doorway, across the sanctuary from where I was, and caught my eye. I motioned for him to come to me. In days past, Martin would have ignored that and called to me from across the sanctuary, regardless of what was going on. This week, instead of calling out, he came. He jogged, ducking around the choir robes, to my seat and asked quietly, “Um, may I please start eating my snack?” I figured that an adult must have seen him in the common room and, knowing he follows a restricted diet, told him to go ask his mom whether it was okay to eat the snack. (Understanding and conscientious parents? Very patient parishioners? We are so blessed.) “Yes,” I said. “Go ahead.” And he disappeared again.

Later, when I had made my own way to coffee hour, I was approached by a woman I don’t know. She introduced herself and said she’s been coordinating the Christmas pageant this year. (Martin has been cast as “Shepherd No. 2.” He has two lines, which he has memorized.) “I just wanted to tell you,” the woman said, “your son is a joy. He is an absolute joy to work with.”

Boo-yah. Can you see why I decided to leave mitochondrial support for tomorrow?

Facepalm

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Last weekend at church, an older woman asked whether I know anything about selective mutism. Actually, she first asked me whether I know anything about “selection mutation.” Getting to the actual inquiry took some clarification.

“Not too much,” I replied. “Some. From what I understand it’s a type of anxiety disorder.”

The woman said her granddaughter, in Maine, has selective mutism, and she worries that her daughter isn’t doing enough to treat the condition. Is it like autism? she asked. Martin is making so much progress. Can selective mutism be treated like we treat Martin’s autism?

I answered, “From what I know, many of the disorders we think of as behavioral or psychological have a health component, at least when there isn’t an obvious other cause like abuse or overwhelming life circumstances.” Actually, I probably didn’t say it that pretty, but I made the point. “So I would guess you might be able treat selective mutism biomedically.”

“I knew it!” the woman said. “I knew there must be a medication she could be taking!”

Completely not what I meant, I said, as kindly as I could, and then explained some of the fundamentals of our biomedical approach: the restricted diet, everything organic and homemade; the supplementation; the antimicrobial herbs; the homeopathy; neuroplasticity and home-based therapies.

Though I kept the discussion as simple as possible, the woman’s attention waned with each word I spoke. There were no follow-up questions.

That’s the way we’re headed, as a society: Isn’t there a pill to remedy this? Isn’t there a shot to prevent that?

Easy fixes.

I’m Going to Need to Explain It Better

Posted on by findingmykid
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Well, this was bound to happen, sooner or later.

Over Thanksgiving, I brought Martin supplements as he was playing in his bedroom. He swallowed them without liquid, as he does for all pills other than Li-Zyme Forte, which he calls his “hard-to-swallow pill.” I don’t usually deliver supplements to Martin’s bedroom; we do them in the kitchen, preferably with meals. On this occasion, with my family visiting for the holiday, I was trying to get a jump on the evening protocol and make dinner a more normalized affair.

Without looking at me, still drawing a picture on his easel, Martin asked, “Why do you give me these pills?”

Ooooo. Okay. I said, “Remember when we talked about your tummy having troubles, and how when your tummy has troubles, it can make it hard to pay attention?”

“Sure.”

“These pills are meant to help your tummy work a little better.”

“Do my friends take pills?”

“I’m not sure about all your friends. Bobby does, and so do Z and Jackson.” Those are friends whose families treat their autism and other challenges biomedically.

“Some of my friends take pills, but not all of my friends?”

“I think that sounds right.”

“Okay,” Martin said. “I’m drawing a picture of the Beatles.”

“I like it,” I said, relieved that he’d changed the topic.

The conversation left me with two take-aways:

  1. Martin is bound to ask the questions again, and probably won’t let me off so easy. I’m going to have to think carefully about how to respond.
  1. One of these days, I’m going to get hit with the bomb. Martin is going to ask, “Do I have autism?” We came close once already. We were out to dinner with friends when Martin, who took especial interest in street signs around the time, asked, “Mommy, what’s a ‘Child With Autism Area’?” I responded that a sign like that means that drivers should be extra careful because a child who lives nearby might not realize how dangerous it is to be in the street. Then Martin asked what autism is. As Andrés and our dinner guests listened in silence, I responded, “Autism is a condition that can make it difficult to pay attention to what’s going on around them, or difficult to talk to other people.” I waited, mildly panicked, for Martin to ask whether he has autism. But he didn’t. He changed the topic. Bomb dodged.