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.

Bound To

The autism recovery path is so jagged—so many ups and downs—that the key to longevity is managing my own emotions. Well, one key. Other keys are financial stability, a supportive co-parent, close friends, a cooperative school district, available therapies, access to organic foods, home ownership or other opportunity to create a cleaner living space, and let’s face it, we’re talking about innumerable keys. But certainly managing my own emotions is one. I struggle not to pin my mental state, any given day, to Martin’s transitory condition. Martin has good days and bad days, good weeks and bad weeks, good months and bad months. I don’t mind the elation when Martin feels well and performs well. Giving into despair when he doesn’t is a recipe for driving myself crazy.

That being said, it never ceases to bewilder me when Martin looks near-typical one day and strongly symptomatic the text, without any obvious intervening factor.

Two Fridays ago Martin earned his yellow belt in taekwondo. He didn’t perform exactly as well as the other eight-year-olds being tested but nonetheless paid attention and made the correct moves and legitimately earned the belt. We went out for sushi to celebrate, and Martin went to bed early. He spent that Saturday in New York City with his uncle Eddie. By all reports they enjoyed themselves and Martin’s behavior was stellar. Saturday evening we had dinner at home; Eddie (who eats meat, occasionally) and Martin had organic roast turkey, Brussels sprouts, and brown rice pilaf with vegetables and sprouted pecans. Martin, exhausted from his day, again went to sleep early and without incident. That night he slept 11-and-a-half hours.

Nothing changed.

Nothing, except that Sunday morning Martin was antsy in church. He rocked around during children’s time and, I learned later, disrupted Sunday school with incessant talking. That afternoon he became crabby. Sunday night, alternating between anxiety and cracking himself up, he had trouble falling asleep. I dropped off close to 11:00 pm. He was still awake.

Monday’s school report was—less favorable than one might hope.

Tuesday’s report was—disastrous. After school, Martin looked goofy and distracted at taekwondo class. At church Kids’ Klub, in front of all the children, he called the teacher a “liar” when she misspoke and said “tomorrow” instead of “next week.”

By Wednesday evening, following a trombone lesson that made me ask myself why I’m still paying for trombone lessons, Martin was running back and forth. Remember that? Run from sofa to stairs, stop, turn, space out, then jump and pa-dap-BUMP, run back to sofa, stop, turn, space out, then jump and pa-dap-BUMP, repeat. Classic repetitive behavior. Haven’t seen it in months. Months. Before Wednesday, I would have put “running back and forth” into the “so far gone” bucket.

There were other behaviors too, both at home and at school, that for Martin’s privacy I’d rather not document here.

On Thursday, Martin started to reemerge from the mystery fog. Thursday’s note from school said, “Martin had a better day. :-)” Friday, which was a parent-teacher conference day with no school, Martin had a successful play date with two friends and focused well at taekwondo. Saturday afternoon he worked three hours on a Lego project with Adrian, without complaint. Sunday he hosted a home play date for three friends.

The Friday-Sunday update is based on reports from Adrian and Samara. I was away for the weekend, with six girlfriends from high school. Some of them read this blog. Thanks, ladies. You sustain me.

So why did Martin, without any apparent external stimuli, tank for several days? I don’t know.

And why did Martin’s Wednesday ROOS, combined with a Friday parent-teacher conference about behaviors that are causing fellow students to alienate him, send me into a tailspin, albeit a short-lived tailspin? That I do know, and I’d like to find a way to change the answer.

 

Opposite Direction

We had that one golden week, immediately after I switched Martin to low-salicylate diet.

The next week wasn’t so good.

This week isn’t so good.

You know what I mean by “not so good”: lots of silliness, little concentration, some meltdowns.

We are still doing low-sal.

I can’t identify any environmental changes since golden week.

What is different is that we are, again, increasing the anti-microbials in Martin’s protocol, trying to reach what his doctor considers full dose.

Martin’s system is sensitive and reactive. I begin to doubt whether we will ever make it to full dose.

I’m going to try an experiment, this week: I’m going to reference Martin’s protocol sheets (I print them at home and keep them all, of course) from our ski week and from the golden week. Whatever dose of each antimicrobial Martin had those weeks, he shall have this week.

I’m writing this at Martin’s taekwondo class. I’m watching him focus on nothing. I’m looking at a kid with half the attention span he had two weeks ago.

And so for a little while, I don’t care whether we are working to reach full dose of antimicrobials.

I just want another golden week.

Disappointment

I’d like to write a bit on the topic of disappointment, because disappointment is affecting me this week.

To be honest, disappointment is always affecting me, to some degree. When we started recovering Martin, more than five years ago(!), I thought we’d be done by kindergarten. The mother who launched our biomed journey put that notion into my head, I suppose, because she’d recovered her own son in less than three years. Martin is in second grade now, and if you read this blog, you know that he’s not recovered yet. That disappointments me, chronically.

The fact that the pace of Martin’s recovery disappointments me—that compounds the issue, because I feel disappointed in myself. Think about the son I have today: conversant, joking, getting-healthy, almost-non-stimming, diagnosed ADHD/language delay. Compare him with the constantly stimming, perseveration-stuck, limited-speech son I used to have, diagnosed ASD. What kind of person am I, to let disappointment enter my thoughts?

dis•ap•point

v.tr.

1. To fail to satisfy the hope, desire, or expectation of.

2. To frustrate or thwart.

v. intr.

                To cause disappointment.

We are hoping to transfer Martin from his self-contained special-education school to a general-education classroom with an aide. The neurodevelopmental psychiatrist (mainstream) says that Martin is ready. The behaviorist says that Martin could make the leap. Martin’s Sunday-school teacher, who has charge of him along with a dozen typically developing kids one morning per week (and who herself has a son fully recovered from autism), has advocated for general education. Adrian and I, when we see Martin at his best, know that he has outgrown his special-education placement and needs the challenge of general education.

Our zoned elementary school, at Martin’s grade level, has 26-to-28 pupils per class. Even with an aide, that’s too many. Instead, we’ve been combing the local private schools, which average 12-to-15 pupils per class. I’ve met with the admissions directors of more than half a dozen private schools, explaining that we want to transition our son, and that he would likely need assistance, including a classroom aide, for another year or two. One school told me to get lost: They had no provisions to help a child transition to general education, and were not interested in stretching their parameters. Several schools said they had a resource room and/or a special-education teacher on staff and could offer accommodations but would not consider a classroom aide. Two schools, both church-affiliated, said that if Martin was otherwise a good fit, they would consider allowing a classroom aide. One of those two schools currently has two students with classroom aides, and its headmaster is a former special-education teacher. That school soon became my, and Adrian’s, top choice for Martin. When the school agreed to have Martin visit for a day, last week, we were hopeful.

As I wrote above, when we see Martin at his best, Adrian and I know that he has outgrown his special-education placement and needs the challenge of general education. Regrettably, Martin is not always at his best, and for the past month or so, he’s been sensory-seeking, with a diminished attention span. (A limited attention span—an infinitesimal attention span—remains Martin’s greatest challenge. Diminish that? Argh. Martin? Martin? Hello, Martin?) When he visited our top-choice private school last week, Martin was not at his best.

The school promptly turned us down.

What a disappointment.

Disappointment, because although the other church-affiliated school remains in play, our plan to move Martin to general education may be delayed another year. Disappointment, because the school we thought would want our son rejected him. Disappointment, because biomedical recovery is still a fringe movement, so I cannot tell the school, “Two steps forward and one step back. It gets worse before it gets better. The antimicrobials he’s taking for Lyme disease have kicked up a lot. Wait a month or two. He will be a whole different kid.”

The sting of rejection is still fresh, and today Martin’s annual review arrived from his current school. If you have a child with an IEP, you know that annual reviews, and progress reports, and IEP’s themselves, are not drafted to highlight a child’s strengths. They are drafted to justify maintaining services. Martin’s annual review is no exception. He has trouble sitting in his chair properly. He sometimes calls out inappropriately during lessons. (Detoxing. Ever hear of detoxing?) He reacts poorly when he doesn’t earn all his behavior-management tokens. He can’t focus. He needs prompting. He is making progress, but he isn’t ready to leave his supportive setting.

When I was a child, my family had a Magnavox Odyssey2 video game console. (Showing my age with that admission.) I remember a game that scrambled words. I just searched online but found no record of this game. (If you, dear reader, happen to be an Odyssey2 whiz, or just skilled at finding ancient relics online, please email me at FindingMyKid@yahoo.com, or comment on this post, with some evidence that this word game existed.) I loved the Odyssey2 word game. I challenged myself to find words too long to fit on the screen.

I remember distinctly: The longest word my pre-teen mind could conjure was DISAPPOINTMENTS.

Fifteen letters, DISAPPOINTMENTS. Many months passed before I found a better word than DISAPPOINTMENTS.

Today, here, now, I challenge myself to find a better word than “disappointment.”

I challenge myself to find a better emotion than disappointment.

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Martin, next to a good friend of mine, checks out the Long Island Sound.

Body Integrity

Martin’s Lyme treatment makes him sensory-seeking, and I am his target.

He grabs hold and squeezes—puts me in headlocks, wraps his arms around my waste, tugs my arms, hops onto my back and chokes me.

His hands are in my hair—pulling my ponytail, removing the elastic, dividing locks into temporary pigtails, transferring whatever is stuck between his fingers (say, peanut butter, or coconut shreds) to my scalp. I don’t have great hair to begin with. Now it’s a downright disaster.

He headbutts my back, my arms, my torso, even my head when he can. It hurts. Then he rolls his head against me, hard. Back and forth. Back and forth. It is winter, and the air is dry. Sometimes his hair shocks me.

He wipes his nose on me, regardless of whether it needs wiping. I prefer when it doesn’t.

He climbs into my and Adrian’s bed and attempts to burrow. Once he gets part of himself wedged under me, he starts to kick.

He stands atop my feet.

He sits next to me and puts his head in my lap. That is fine, until he starts trying to do a headstand. If I flip him upright, he climbs onto the back of the sofa. From there, he headbutts me. See details, above.

When he does these things, he clenches his jaw, as if he cannot get enough sensory input. Occasionally he raises his arm, tightens the muscles, looks scared and uncertain, and brings his hand down to hit me—not hard, not intentionally, more like a slowed-in-air tap, unable to stop himself. In return, I hug him tightly.

I love my son. I love having him near me. But this is getting old.

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(Martin, on the campus of Stanford University, last weekend. Only ten years till he applies for admission.)

IMG_1923

(Martin, rocking the spectrum at We Rock the Spectrum training facility in Berkeley, California. He rock-climbs much better when wearing sneakers. Also, I forgot to bring his Cal State Golden Bear sweatshirt, so he was wearing Stanford Cardinal red, in Berkeley. Faux pas!)

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.

Hard Truths

Where have I been, these two months?

Let’s talk hard truths.

I’ve been dealing with Martin, who’s been nowhere near where I’ve wanted him.

Over this summer, something went awry, and his progress hit a plateau. I did not see significant improvement.

Honestly, I don’t really recall seeing any improvement. We had some firsts, like supermarket walking and approaching a stranger. At the end of July, a friend sent me an email stating that her husband, upon interacting with Martin for the first time in several months, “thought he seemed great—real improvement since last time!” But the jagged ascent to which I’ve become accustomed—progress, little setback, progress, little setback—evaporated. At times the summer felt more like uneven descent: no progress, little setback, no progress, little setback.

Finding My Kid is “a parent’s real-time blog of autism recovery.” It’s hard to post reports when no recovery is evident. It really is. It’s even harder when the author descends into hopelessness, into questioning whether she’s abandoned her career, her church work and activism, and large chunks of her social life in pursuit of a goal that never will be reached.

Then, two weeks ago, Martin tanked. I mean, tanked. One day I felt like, though progress had leveled off, at least I had a child without perceptible autism, and the next day I had a child with myriad classic signs of the disorder. In our apartment Martin ran compulsively to and fro, chanting “d-d-d-d-d-dah, d-d-d-d-d-dah.” He lost eye contact and name responsiveness. He threw tantrums when not allowed to watch one video repeatedly. Echolalia resurfaced. It was as if a year of progress disappeared overnight.

I consulted with his doctors and therapists. The prognosis was unanimous: stress. Adrenal stress, systemic stress from doing too much. Martin’s delicate system cannot keep up with the amount of detoxification we’re imposing.

We pulled back immediately. I took him off almost every agent meant for detoxification, whether heavy metals, parasites, viruses, or otherwise, and I kept him on only supplements and agents meant to support his adrenals.

With those changes, Martin shows signs of improving again. The repetitive behaviors, though still present, are diminishing. He’s making eye contact, albeit unsustained. Adrian and I are subjected to near-constant whining (hey, Martin is a four-year-old, after all) but fewer tantrums. I’m not going to say Martin’s recovery is back on track. I’m not even going to say we are where we were a month ago, when I already was unhappy with his progress.

I will say that, I hope, the ship is turning again.

So why recommence blogging now?

Because I have no excuse not to. Finding My Kid comes with an honesty pledge. Posting reports only when recovery is proceeding apace—well, that’s just not honest.

See you soon.

[Addendum: If you’re taking the time to read Finding My Kid, you probably already saw the piece in this morning’s New York Times about the the links between autism and immune disorders. I’m always happy when the mainstream press edges toward acknowledging that autism is medical and should be treated as such.]