Actualización I de Nicaragua: La Ansiedad

As consistent FindingMyKid readers may know, I believe Martin’s primary challenge, these days, to be anxiety. Before I dive back into anxiety, here’s an abbreviated rundown of other challenges and where they stand now:

  • We have the rare night when he’s giggly and detox-y, or too anxious to drift off. By and large, however, Martin falls asleep within 20 minutes and wakes ten (or so) hours later.
  • Martin’s difficulties with social/pragmatic language persist, and his language processing lags; he might transpose “you” and “I” in a complicated sentence, or need a multi-step direction repeated. Other than that, Martin can read, hear, and speak at an age-appropriate level.
  • Energy and “floppiness.” Martin does get tired faster than other kids (thank you, mitochondrial dysfunction!), and when the energy runs out, he becomes clumsy, clingy, and sensory-seeking. This condition is improving and can, I find, be managed by alternating exercise and down-time.
  • As may be clear from the series of school bullying posts, Martin’s interest in playing with other kids has increased—it still isn’t very high, and I suspect he may always tend toward introversion (like I do)—but he has trouble figuring out how to go about becoming involved.
    • Example: In the house next to ours in Nicaragua are twin boys, maybe six or seven years old. We hear them playing in their pool constantly. Martin will creep to the edge of the yard and observe without making any effort to engage them, and he scampers inside when I suggest talking to the brothers. I mentioned this to Samara, who said, “I know. He does not like to be told to play. But I have noticed him getting closer to a few kids from camp.” His interactions are cautious and time-consuming.
  • Martin continues to perseverate, in the sense of “talking endlessly about what interests only him.” The perseveration has lessened from the days when he simply could not stop speaking. Now it’s more like memorizing city skylines and assuming everyone else wants to talk about them, too.
  • Repetitive behavior. As for physically repetitive behavior, occasionally Martin still jumps, or hops three times and runs one direction, then hops three times and runs back the other direction. The difference is that now he recognizes the behavior, and makes explanations, like, “I’m getting my jumps out so I’ll be able to stay still for taekwondo.”

All of that is pretty good—not to mention everything that’s so far gone I no longer think to add it to the list, like echolalia or bolting or lack of proprioceptive awareness.

But then there’s anxiety, the mountain so insurmountable that it’s driving me and Adrian to consider medical marijuana. For months, Martin has been clenching his fists, forcing his lower jaw forward, shouting, crying, opposite-talking (“I’m never using my iPad again! Throw it away! No, Mommy, don’t throw it away!”), and generally controlling our family time with his meltdowns (or threats thereof).

I’ve been hoping that moving to Nicaragua for a few months would alleviate Martin’s anxiety.

Three weeks into our summer, I’m pleased to report that I see progress.

We’ve had two very-high anxiety (and crabbiness) events. The first was July 4. We’d been in Nicaragua only three days. Adrian suggested a trip to Granada, a two-hour drive. Martin hated everything about the journey, couldn’t stop asking what we were doing and when we were going home, whimpered and whined through a boat tour on Lake Nicaragua.

After that, Martin did comparatively well until last Sunday, when he and I and a visiting friend made a day trip to Ometepe Island. Sunday morning was nothing short of a disaster. Even before we boarded the ferry at San Jorge, Martin sank into meltdown mode. The situation worsened when we arrived in Moyogalpa and found the driver we’d pre-arranged for an island tour. In the back seat, Martin lost control. He clenched his fists and jaw, lashed out at me, and screamed in English, “We’re never leaving Ometepe! Now we live here! Now we’ll be here forever!”—to the bewilderment of our driver, who spoke only Spanish. With effort, I got Martin calm enough to proceed through a butterfly sanctuary and then take a hike in the adjacent woods. Thank goodness we took that short hike. Something about the muddy path relaxed Martin. He went ahead of me and my friend (which I didn’t love, because we could hear Congo monkeys barking in the trees, and I had no idea whether they were dangerous) until he reached a clearing with a view of the lake. There he stopped and waited for us, and even posed for a couple pictures before declaring himself the “leader” and heading onward. Although Martin never got comfortable, the day improved from that clearing onward, at least until an arduous and uncomfortably overcrowded ferry ride back, which made him sensory-seeking.

 

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Martin, still unhappy as we headed into out post-butterfly hike.

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The view of Lake Nicaragua that seemed to mark a turning point in Martin’s awful day.

Those two events—Granada and Ometepe—notwithstanding, Martin has relaxed in Nicaragua. Somewhat. He’s still thrusting his lower jaw forward (if I can get him to chew gum, that helps) but not clenching his fists or complaining quite as much. He’s been speaking well to adults, even introducing himself. Day camp seems to be going well. We haven’t had many tears this week.

I’m noodling what might explain the limited improvement:

Limited social pressure. Without school, and especially until day camp started earlier this week, Martin didn’t have the same pressure to socialize.

Relaxed mom. We all know that I’m usually half the problem (if not more) when it comes to anxiety. With less on my agenda (I’m trying to cut down on work for the summer), and plenty of rest, I’m pretty chill.

Environment. There is activity afoot in Southwestern Nicaragua. But it’s nothing like the crowds and traffic and bustle of the Tri-State Area, even in the suburbs where we live.

Health. I don’t love Martin’s diet here. With less variety, he’s eating too many carbs (rice) and other sugars (fruits). On the other hand, I’m pleased with his regular ocean romps and exercise, including day camp, taekwondo, trekking, and pool swimming.

Biomed protocol. We continue treating Lyme disease and babesiosis, and we are ramping up the protocol Martin’s doctor set in June, which includes MC-Bab-2, Sida, and pau d’arco. Often we see improvement as we head into a new protocol.

We saw some anxiety this morning, as today was Martin’s first day-camp field trip—back to Granada, of all places! Stay tuned to FindingMyKid for additional Nicaraguan dispatches, including a follow-up on anxiety.

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This was the happier kid on the second half of our Ometepe hike. Later we had lunch and went swimming in volcanic mineral waters.

Passing Storm

Last Wednesday, my brother Rudy and I took Martin to Disney in Anaheim. Rudy and I talked the day up: the characters we would see, the rides we would ride. Because one of Martin’s current interests is marching bands, and Martin always has enjoyed live music, Rudy mentioned that we might see a marching band too.

When Martin woke on Wednesday morning, at my brother’s home in Laguna Beach, he seemed—okay. Not great. Not particularly enthusiastic about the daytrip to Disney. Just okay. I fed him Treeline cashew cheese on flax-seed crackers for breakfast, and then we stopped for second breakfast at the Penguin Cafe, where Martin ordered a hamburger patty, fruit, and “bubbly water.” He ate slowly and seemed distracted. His voice modulation was subpar. “Indoor voice, bunny rabbit!” I reminded as he shouted his order at the waitress. “Use your indoor voice!”

The real trouble started in the parking lot when we got to Anaheim. “I don’t want to go to Disney,” Martin said when we exited the car. “I just want to go back to Uncle Rudy’s.” I wasn’t sure how seriously to take his words; Martin often reverses what he wants to do and doesn’t want to do, and his hesitations can be fleeting. I persuaded him to get on the shuttle from the parking lot to the park. On the shuttle Rudy engaged some kids who presented themselves as experienced Disneygoers and gave advice on rides and performances. Martin sat silently. He opened his mouth only to answer, with additional prompting, when someone asked him how old he was.

On the plaza outside the park, Rudy picked up a schedule of events and, trying to rouse excitement, told Martin that he would be able see a marching band (parade) at 4:30. Martin completely freaked. He did not want to see a marching band. He did not want to go to a park with a marching band. I took him to the restroom, had him sit on the plaza with Rudy, and finally negotiated an agreement that we would enter California Adventure, Disneyland Park’s companion. We would not see a marching band, I said. We would not enter Disneyland.

We made it inside California Adventure. I headed straight to the “Chamber of Commerce” to request a special-needs speed pass. The agent who helped us with the pass also put us on a list for the Monsters, Inc. ride ten minutes later. We didn’t make it, because Martin panicked at the idea of attending any attraction. He was full of anxiety. He walked aimlessly, crying and not crying and crying again. He couldn’t stop asking about the marching band, whether we would hear the band, whether we would go to the other Disney park. He fixated on 4:30, the time when Rudy had said the marching band would play (in the other theme park). He didn’t want this. He didn’t want that.

“Hey, I’m happy just to be here, walking around with you guys,” said Rudy, who had taken the day off work to accompany us. “Let’s go with it. Maybe he’ll find something he wants to do.”

Alas, Martin didn’t find anything he wanted to do, at least not then. I bought him a black coffee, hoping that might help. Nope. I bought him a box of organic apple juice as a treat, hoping that might help. Nope. Martin couldn’t bear to be still, couldn’t be held. He moved, whined, and panicked. As the situation became ever more challenging—“Mommy, will we see the marching band? Mommy, what time is it? Mommy, I don’t want to go to the Disney park. Mommy, can we hear the marching band? Mommy, is it 4:30?”—I considered throwing in the towel. I wondered if I should return to the “Chamber of Commerce,” explain that my usually stable son was having anxiety meltdowns that precluded our enjoyment of the park, and ask to return and use our $300 tickets the next day. Finally, when I ran out of ideas, Rudy saw openings at a nice in-park restaurant, asked about special-diet options, and guided us inside.

Martin managed to listen to the food options and order, interspersed with getting up to run around. Then he sat long enough to eat an entire order of boiled calamari, followed by a plate of gluten-free pasta with clams. (It was barely noon. Remember, he’d had two full breakfasts before we left Laguna Beach.) Rudy and I drank wine with our lunches. By then, alcohol was necessary.

By the end of lunch, Martin seemed a little better. He still was having trouble sitting still, but the crying eased. He went to the men’s room by himself. He didn’t get upset when I couldn’t find a dessert that he could eat.

After lunch he asked to enter one of the eight million stores. Thinking that something to clutch would ease the anxiety, I told him he could pick out a stuffed animal, and he chose an eight-inch Donald Duck. When we exited the store, Martin seemed calmer. He looked at a ride, a kiddie attraction with jellyfish that rise into the air. I asked if he’d like to go on the ride, and to my surprise, he agreed.

From then on, the situation turned. The anxiety didn’t disappear completely, but Martin asked about the marching band only every 10 or 20 minutes. The restlessness decreased. He tried half a dozen rides, including the Goofy’s Sky School roller coaster, despite his professed dislike of roller coasters. He asked to enter a courtyard and listen to a Raggae-style band. Rudy and I exchanged what-on-earth-is-happening? glances, and when Martin was out of earshot, verbalized those glances. In the end, we stayed at California Adventure until nearly 7:00 pm, and finished off the day waiting patiently in a long line, at Martin’s request, to meet Minnie Mouse. Once we were headed back to Laguna Beach, Martin skillfully introduced Donald Duck to his friend Chicago Bear, who had spent the afternoon guarding Rudy’s car.

We had one kind of morning, and a different kind of afternoon.

I’ve asked myself repeatedly what could have caused Martin to have such a disastrous morning. The full moon? Traveling? Lack of sleep because of jet lag? A nasty insect bite on his foot that’s had me worried? A healing reaction?

I suppose I will never know, which is unnerving. I’m glad it didn’t last.

When Martin, feeling better, said he doesn’t want to go back to Disney anymore, I decided to honor his wishes.

Understanding

“Martin’s progress has slipped a little.”

That’s a euphemism for reality. It means Martin is having a crap week.

I write a lot about this topic, I know. When Martin suddenly looks less like a kid on the path to recovery, and more like a kid with autism, when he tanks, when it all goes to pot, when dinner and bedtime just are not going to happen without a glass of wine (for me, not for Martin), I blog. I blog because I owe you the whole story, because it’s cathartic, and because misery loves company. (These posts tend to generate more messages than any others. Need to talk? Have at it: findingmykid@yahoo.com. Or use the comments section.)

Martin had been doing so well lately, right up till this weekend. Saturday we invited a local family over to swim. They have two kids, age four and almost-six. I’ve known this family for about a year, from church. I know the mother better than the father. Halfway through the afternoon, the father apologized to me for not realizing that Martin has autism. He was surprised when his wife mentioned, on their way to our house, that Martin follows a special diet to alleviate autism. He’s seen me helping Martin around the other kids at church. He always just assumed that my son was shy, or nervous because he doesn’t know the other kids well.

Apologizing? Because you see Martin every week and didn’t realize he has autism? Thank you, but really, no apology necessary.

Sunday afternoon we went to a birthday party. Martin willingly joined a game of tag with the birthday boy and a few other friends. Sunday evening Martin was disappointed that Adrian couldn’t come out to dinner with us because he had a conference call. The call finished earlier than expected, and Adrian surprised us by showing up during the entrée course. Martin, visibly excited, exclaimed, “Oh, you came! I’m so happy!” A friend, visiting for the weekend, who hasn’t seen us in several months, remarked on Martin’s uptick in verbal skills.

We rocked the weekend. Then all hell broke loose.

Sunday night Martin had trouble getting to sleep. Monday morning he slipped into unfocussed silliness. Monday afternoon, at a playdate, he cried and stomped for 20 minutes when I refused to say we could get a chalkboard at home. (I’m scared of chalkboards. Better just to leave that one alone.) Tuesday we received a note from school that Martin was acting defiant and attention-seeking, and that he had hit a teacher. (We jumped all over that one. Martin spent Tuesday evening writing an apology to his teachers.) The highlight of my Wednesday was Martin throwing himself onto the Stop-N-Shop floor and screaming, “I don’t want to buy any fooooooooood!” (As a sign of how far I’ve come regarding public embarrassment: I spent that minute or so, while he was screaming on the floor, searching my purse for my grocery list. Where is that list? How could I have misplaced it so quickly? Wait, is that my kid terrorizing aisle 24?) Through all these incidents, Martin’s language skills, so strong this summer, failed him. He repeated himself, went rote, even babbled. And yet, except for sleeping, he hasn’t stop talking since Monday morning. Just talking and talking and talking and talking. Point, or no point. Accentuated here and there with loud, forced laughing.

Why? What transforms a close-to-typical-child weekend into a thought-we-were-past-these-symptoms week?

After three-and-a-half years of biomed, I’m finally getting the hang of recognizing the likely causes of backsliding. This week, it seems, we’re dealing with yeast die-off. Several weeks ago I began seeing the harbinger of yet another yeast flare. I’ll spare you the details of that harbinger; suffice to say, it’s poop-related. Candex, an enzymatic formulation, has been controlling Martin’s yeast. Last week, Martin’s biomed doctor and I decided to increase the daily Candex dose, and I started that process Thursday evening.

Increased Candex leads to decreased yeast. Decreased yeast means yeast die-off. That’s a toxin in the system, almost like alcohol. It can make a kid silly, or angry, or irritable. That’s happening to Martin now. In tandem with these behaviors, the aforementioned yeast-flare harbinger (okay, fine: the unusual poop) is fading.

Yesterday morning I signed on to one of my autism-recovery groups and saw this post from a fellow mom:

We’re on week three of nystatin for yeast. These past five days I’m pretty sure we’ve been dealing with die-off. Behavior has been super hyper, nonstop talking/making noise, fake laughing a lot, not listening at all, emotional outbursts, no attention to tasks AT ALL, itching??

Yes. Yes! I cyber-shouted. That’s yeast die-off. I’m right there with you, sister.

Understanding the physical cause of Martin’s, ahem, “slip in progress” helps me see that the behaviors are not within his control, and indeed that my little boy probably feels as agitated, flummoxed, and eager to alleviate this situation as I do. Understanding the physical cause also helps me see that darling, recovering Martin will return.

Soon.

On Monday's playdate, Martin behaving. Didn't last long.

On Monday’s playdate, Martin behaving. Didn’t last long.

Hiding It

Kenji Yoshino, a law professor, wrote a book called Covering. To “cover,” according to Yoshino, is “to downplay a disfavored trait so as to blend into the mainstream,” and the pressure to cover is universal, because everyone possesses some attributes that society stigmatizes. Subtle coercion to cover, the author argues, imperils even our civil rights, because society penalizes those who refuse to cover, who refuse to mask their otherness for the sake of fitting in.

I’ve been thinking a lot about Yoshino’s thesis, because I exert a lot of energy in “covering.” I hide the fact that I am an autism mom, and when it comes to Martin, I conceal his ASD—the condition that, arguably, influences his life more than any other right now.

As I’ve explained on this blog, Adrian and I have chosen not to be public about Martin’s having autism. Our closest friends and relatives know, as do our immediate neighbors, and Martin’s doctors and caregivers. Beyond that, we’re tight-lipped.

We withhold the information from more casual acquaintances—people who don’t know Martin well but will probably remain in our future social circle—because we believe that Martin will not always have autism. We don’t want anyone’s dealings with the recovered Martin to be prejudiced by his having once had autism. Indeed, we don’t want anyone’s current dealings with Martin to be prejudiced by his currently having autism.

We withhold the information from strangers so as not to suffer their pity. I don’t want Martin subjected to preconceived notions of autism, not even for a moment. And no matter how much I might want special treatment at in a given situation (waiting in a long line, for example, or chasing Martin down in a clothing store), I refuse to allow anyone to think we need special treatment.

So, yes, I cover. I pretend that Martin is tired, or shy, or unfamiliar with the topic at hand, or better at speaking Spanish than English, or better at speaking English than Spanish. (In later posts I’ll explain more about my techniques for concealing autism. I don’t want to make this post too long.) If pressed for an explanation, I use a euphemism. A TSA agent asked me why she needed to hand-search the dozens of pill and liquid bottles I refused to run through the X-ray machine; I said my son has a “neurological disorder” and that X-ray can change the composition of his medications. An acquaintance inquired why we hadn’t tried to place Martin in a private preschool in our neighborhood; I responded that Martin has “some minor attention issues” that we want to “take care of” before kindergarten.

Are we wrong to keep Martin’s diagnosis a secret? Possibly. Through our actions we may contribute to the isolation persons on the spectrum; if we’re hiding something, does that suggest we believe it’s something that should be hidden? We might also be failing to set an example. If we really believe in biomedical recovery from autism—we do—shouldn’t well tell the world to watch our son and bear witness to his progress?

It comes down to parenting. If I were making the choice for myself, maybe I would sacrifice my own privacy, and risk prejudice, in order to set the example. Many “Aspies” are very public about their way of being in order to combat discrimination (and have created at least one organization dedicated to opposing autism recovery). Our son is too young to make that choice, and as his parents we have to err on the side of protecting our own.

So that’s that. For Martin’s sake I am willing, in at least one thesis, to tear at the fabric of our civil rights.

Once upon a time, I was a teaching assistant for constitutional law. What would my professor think today?