How It Lingers

My sister is visiting us, here in Costa Rica, with her two daughters:  Mandy, who is Martin’s age, and Julie, who is about to turn two years old.

Sunday we took a day trip to a nearby beach town. When we arrived, the kids got fruit smoothies. Then we hit the beach. The waves were pretty strong. We adults (my sister, my brother Eddie, and I) took turns going into the surf with the kids. I try to get Martin as much salt-water time as possible. I consider the ocean a health spa.

Martin had already had several solid days with Mandy. She attended camp with him. The two of them fussed and played for hours each afternoon. They put together evening concerts: Mandy wrote an emcee script for Martin to perform, and then, using five-pound dumbbells for microphones, the two sang Uptown Funk!, A Million Dreams, even a jazzy version of Happy Birthday to send to Adrian, who’s in New York. The songs were accompanied by the kids’ original choreography, which resembled running crisscross while high-fiving each other at each pass.

And now, Sunday, everyone was having a great time, as far as I could tell, even if Martin did start to get anxious as lunchtime neared.

We left the beach to walk to an outdoor fresh-preparation food stand (everything gluten- and dairy-free! pura vida!). Along the way we stopped at a souvenir shop, where Martin selected an inexpensive carved frog. I spoke to the proprietor in Spanish. Martin refused to look at the man. Instead he put his face near mine and whispered, “Mommy, pretend you don’t know a word of English!” Martin’s picked up an odd obsession lately: He tries to dictate who can speak which languages, and when. He even manages to impart his angst into the topic. If he finds out we are going out to dinner, he demands to know in advance whether I plan to speak Spanish or English to the waiter and tells me to guess whether he plans to do the same. In the souvenir shop, I said, “Martin, that’s silly. He can tell I have a North American accent. Why don’t you say hi?” The proprietor then greeted Martin, in Spanish, and asked how he was doing. Martin turned away as if he hadn’t heard. Covering, I apologized and said that my son does speak Spanish but is shy about doing so.

As soon as Martin and I were back on the sidewalk—Mandy and the others had wandered to another shop—Martin started to meltdown. His meltdowns are so infrequent these days that I don’t anticipate them like I used to, and this one caught me of guard. Martin asked, “Why did you do that? Why did you tell him I speak Spanish?” His words quickened as he said, “Why did you try to make me say hi? I didn’t want to do that. Why are you so mean? You’re the meanest mom in the whole world.” He was crying as he descended into nonsensical opposite-talk: “I hate you. I don’t love you. I wish you weren’t my mom. I don’t speak English anymore. I’m never speaking English again. New rule: I have to talk to everyone we meet!” He thrust his jaw forward (that old trick again!), clenched his fists, and motioned as if to punch me, though he did not make contact. (He never does, thank heavens.)

I stood by him and let the meltdown run its course. When the opposite-talk subsided, I tested the waters. “Martin, were those the things you really wanted to say?”

Still not in control, he answered, “Sorry, Mommy. I didn’t mean it. I did mean it! I hate you!” He air-punched again, then hugged me, sobbing.

Mandy approached, accompanied by my sister and Julie. Mandy asked, “Why is Martin crying?” Her question pained me, for two reasons. First, the obvious reason: Especially in the moment, I have no effective means to convey to a nine-year-old that her cousin is crying because anxiety has been collecting inside him until a random, almost undetectable social pressure knocked him into a netherworld of confusion. Second, the less obvious, more painful reason: In visits past, Mandy tended to ask mequestions about Martin. “Does Martin like watermelon?” “What time does Martin get up?” I would have to remind her that she could ask Martin, even if he didn’t always answer immediately. This visit, until the meltdown, had been different. Mandy had been asking all her Martin questions—even questions about food allergies and what he can eat—to Martin, and he’d been answering. As he returned to meltdown mode, however, she stopped relying on his ability to speak for himself.

I said, “He’s having a tough time right now. Why don’t we walk to lunch?”

Cheerfully, my sister said, “Great idea! Let’s walk.”

We continued to the lunch joint, Mandy casting suspicious glances at Martin as he tried to get himself under control. By the time we sat at a picnic table, Martin had stopped crying enough to manipulate me. He said, “I think what would help me calm down is your iPhone.”

Adrian and I don’t usually allow screen-time at meals. Nevertheless, I gave in. I wanted to distract Martin from whatever was bothering him before Mandy witnessed any additional meltdown.

A day trip with his favorite cousin, to a beach he knows and enjoys, with the promise of lunch at a food stand he likes, and then, pow!, a meltdown. The frustration! Sometimes it feels like no much Martin’s health and behavior improve, the remnants of autism hide inside him, ready to interrupt paradise with their ugly ways.

My survival tactic is to remember to look for the silver lining. Sunday, allowing Martin to play with the iPhone did the trick. By the time our food arrived (25 long minutes later, pura vida), Martin was ready for limited participation in lunchtime discussion about the waves and fun we’d had in the ocean. On the drive home, strapped into the third row of our SUV, he beatboxed with Mandy. Almost as soon as we arrived back at our rental house, a brother and sister showed up for a play date (these arrangements were Mandy’s doing), and Martin participated decently. Mostly he followed the brother around spouting Minecraft strategies—but hey, that’s a form of socializing.

Martin melted down.

He bounced back.

I take what I can get.

Martin and Mandy, in the waves.

Darling Little Obsessions

At 8:30 Sunday morning, Martin was having a mini-meltdown. He danced awkwardly through the kitchen and family room, yelling, “No alterations! No, never! Mommy, is Daddy right? Can he make alterations? No, it’s thee scoops!”

The morning tantrum was prompted by sorbet. We planned to eat dinner at a restaurant Sunday evening. Nine hours before the event, Martin was already fixated on getting three scoops of sorbet. A sorbet order, he claimed, is three scoops. Last visit to the restaurant Adrian had “altered” the order and asked for Martin to receive just one. When Martin, at Sunday breakfast, demanded to know whether Adrian planned to alter that evening’s order, Adrian replied that Martin could ask for half-scoops of two different flavors, but it was better if he ate only one scoop total. And then Martin freaked.

Martin has two obsessions these days: food and iPad.

The food obsession worries me more, because (1) as opposed to an iPad fixation, food fixation is less common; and (2) its cause, at least in part, is the diet we follow for recovery. Martin is allergic to dairy and to red meat. He hasn’t had gluten in more than seven years. We avoid soy. Other than those restrictions, I currently let just about everything else slide when we are dining out, within reason. Martin is now wise enough to pin me down on these restrictions: “I can have anything but dairy and gluten, right?” “How much sugar can I have?” “Does gluten-free pasta have sugar? How much?” “Are French fries a treat?” He’s developed a give-me-an-inch-and-I-will-take-a-light-year approach to pushing boundaries. I made the mistake, last year, in an effort to harmonize a Sunday dinner, of allowing Martin to order a dish of sorbet for dessert. Martin immediately placed sorbet into his foods-I-can-eat column and fixated on whether sorbet is a “treat,” i.e., something he gets only in limited quantities versus something he can eat whenever. Fast forward to today: Within five minutes of awakening, routinely, he’s asking about whether and when he will get sorbet that day, the first of may food questions.

I overcompensate. I reason that the less Martin feels left out, the less he will fixate. The freezer in the school nurse’s office is stocked with GFCF cupcakes, donuts, and ice cream, in case of classroom party or event. Every Tuesday afternoon Martin shows up to church with a snack more desirable than the pretzels and cookies the others receive. I always keep supplies to conjure a GFCF pizza, on a moment’s notice. Sunday evening, at the restaurant, Adrian ordered key lime pie for dessert. (Adrian and I allow ourselves dessert only if Martin has an equally appealing option. He had his sorbet.) “What’s that? Can I eat that? Does it have gluten or dairy?” Martin asked, when the pie arrived. I replied, “That’s called key lime pie. This one has dairy, but would you like to try key lime pie that you can eat?” He said yes. I promptly rearranged my Monday afternoon schedule so that I could take two hours to prepare GFCF key lime pie. The policy letter I was engaged to write for work would have to wait. Like I said, I overcompensate.

Then there’s the iPad. Weekdays, Martin gets 30 minutes of iPad time, after homework is complete, and dammit, he’s going to make sure he gets that time. Weekends are tougher still. I try to limit the iPad to 60 minutes, but that means occupying him the remaining 12 hours he’s awake. Yes, of course I know that I’m supposed to let him be bored so that he’ll find creative ways to occupy himself. Thus far, however, the only way he’s found to occupy himself is to beg for the iPad and stage a tantrum if his wish goes unfulfilled.

I admire parents who draw the line and curb obsessive behavior by getting rid of the iPad altogether. I’m unwilling to follow their example, for two reasons. First, admittedly, I fear the weeks of meltdown and the impact on my life, which already lacks enough hours to accomplish my goals. There could be no trial period in an action like iPad removal; if we said we were getting the rid of the iPad but eventually relented and returned the device, Martin would never respect a parental decision again. Second, paradoxically, screen time is one way that Martin is able to connect to other kids. He’s made a couple school friends through Minecraft, and other games like Subway Surfers give him ready conversation topics when he finds a fellow player. He also uses the iPad to send messages to his cousin and to his uncle. I’ve decided I am okay with him having the device, with time limits. I do wish the iPad weren’t always on his mind whenever it’s not in his hands.

Martin got his three scoops of sorbet, Sunday evening. While Martin was visiting the bathroom, Adrian asked our server please to tell Martin that an order of sorbet comprises one scoop only. The server did that. Then he added: “And you, young man, may have as many orders as you’d like!” At that point, our dilemma was three scoops sorbet, or an in-restaurant meltdown (which would have been highly unusual, but Martin was having one heckuva bad day). We went with three scoops.

Then Martin accidentally broke a glass, and melted down anyway.

IMG_0444

The Remains of the D…essert. The recipe called for coconut cream, which I didn’t have. I substituted coconut butter, and the topping came out less smooth and more chunky. Nevertheless, my GFCF key lime pie was a hit.

Current Issues

We are off to visit Martin’s biomed doctor. I made a list of issues to discuss, which includes the following:

  • skin rashes, in the form of blemishes that Martin scratches and picks at until they bleed;
  • itchy skin overall;
  • impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome (Martin does not have Tourette);
  • obsession with foods, allergies, which foods he can or cannot eat, which are treats, and so forth;
  • trying to understand tough situations by putting Minions into those situations, like, “Bob [a Minion] was on the playground and another kid said he couldn’t use the swings. Is that nice?”;
  • constantly apologizing, which has been an ongoing habit.

(There were other issues on the list, too personal for sharing on the blog.)

What are your guesses, readers? Parasites? Metals? Lyme activity because we started using cryptolepis to treat babesia? A different form of the yeast beast? Dry winter air? Noticing differences between himself and other kids?

I’ll fill you in after our appointment with the biomed doctor.

And before you worry that Martin’s recovery is off the rails, I will add the following:

First, Martin’s self-awareness is blossoming. Even his teachers have noticed. After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her “racist.” (In light of Black History Month and Martin’s classroom unit on civil rights, our family has been doing a lot of talking about racism and our country’s legacy of segregation. I think he was angry at Nicole, and “racist” was the first insult he happened upon.) He added, “Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth.”

Second, this morning, by phone, Adrian said, “This past month or so, I’ve been having these awesome moments with him, where he’s just acting like a regular kid, and I can finally think, ‘This is it. This is the way it’s supposed to be. This is the reward’.”

What Will We Remember?

Friends visited us recently with their son Robert, who is younger than Martin and less far along the autism recovery journey. Robert kept his mother busy, as she had to pull him repeatedly away from his fixations—trains, colors—to get him to eat or otherwise join the group.

After our guests left, Adrian said, “Robert can be a handful!”

I replied, “Reminds me of Martin a few years ago.”

“No, Martin never had obsessions like that.”

“Excuse me?” I asked.

“I remember when we always had to take the Brooklyn Bridge home, and how he liked certain train lines, but he wasn’t so challenging as Robert.”

“Are you talking about our son, Martin?”

“Yes.”

“So you’ve forgotten when I had to buy placemats in different colors so he could practice using something other than yellow without having a meltdown?”

“That’s right. I did forget that.”

“And the panic if he boarded a subway and no yellow seat was available?”

“I guess he did that, yeah.”

“Then there were the times when he and I had to wait for the No. 2 subway, because if a No. 3 came instead, he’d scream with fright, even though he knew it went to exactly the same place.”

“You did used to tell me about that.”

“How about when he couldn’t go to school unless he had that pink stuffed bear from Chicago in his backpack? When he had to approach and open every mailbox we passed on City streets? When he refused to enter the wine bar if ‘our table’ was occupied? When he—”

“Okay, fine. He did have all those obsessions. It’s easy to forget what those days were like.”

This conversation made me reconsider the previous posts “So Far Gone” and “Manifesto.” One day, when someone says, “Maybe Martin never had autism,” will I respond, “Maybe not,” because I too have forgotten? How will we bear witness to recovery as more and more symptoms become so far gone that we forget they ever existed?

I have his earliest developmental neurology reports, the ones that describe a child unresponsive to his own parents, unaware of his own name, echolalic, in the first and third percentile of expressive and receptive language. Those tell the early story.

And I have this blog.