Category Archives: Deep Thoughts

Although I try to avoid them (I don’t try too hard), some “big picture” thoughts about autism and this blog are bound to appear. I’ll categorize my deep thoughts here.

Target

Posted on by findingmykid
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This happens:

Martin enters our house, sees me in the kitchen, and without my saying a word or any other provocation, immediately trips into a puddle of anxiety. He asks what’s for dinner, then complains about what’s for dinner, says what he wants instead. If vegetables are involved, he asks if other kids eat vegetables and why he’s not like other kids. He jumps. He lists activities in which, he thinks, I won’t let him participate: Can I go to the taekwondo picnic without a grown-up? Can I ride my bicycle to the Stop & Shop? He makes demands and contradicts them: Can I have more than 30 minutes of screen time? No! No screen time! Mommy, no screen time today! Near tears, or in tears, he flees the kitchen and throws himself on the sofa, spewing nonsense.

Three days ago, Martin entered the house to find me prepping his favorite meal—“pizza bar,” in which he gets a pizza crust, sauce, Daiya cheese, and his specified toppings (pineapple, black olives, artichoke hearts, and anchovies) to assemble and bake as he likes—and staged an anxiety attack because I was using Nature’s Promise organic pizza sauce, not Poblano Farmsbrand.

I’ve tasted the two sauces. I’m certain if he hadn’t seen the jar he wouldn’t be able to distinguish the Poblano Farms from Nature’s Promise.

When these meltdowns happen, Adrian or my brother Eddie, having entered the house behind Martin, watches the whole performance, dumbfounded. Once Martin has adjourned to the sofa, Adrian or Eddie says something like, “I don’t get it. He was just fine until we entered the house.”

These events happen, and happen, and happen again.

Martin has severe anxiety, and I, his mother, have become the locus of that anxiety. This reality is difficult for me, and painful. It’s difficult for me because I, too, am prone to anxiety, much more than Adrian or Eddie. As Martin becomes upset and nervous, so do I, which despite my best efforts to hide, Martin detects and incorporates into his own mood. We spiral. It’s painful for me because, even though I know Martin’s anxiety is generalized and not tied to the stimulant that provokes the meltdown, these incidents feel like an attack on me.

As to why I am the target of Martin’s anxiety, my theory has long been that Martin perceives me as the arbiter of limitations on him, especially food. I am the one who sees the entire world in terms of Martin’s allergies; Adrian knows, for example, that Martin is allergic to all forms of dairy, but he still calls me with panicked questions like, “Does chocolate have milk?” I am the one who has done the research on organic versus non-GMO versus “all natural,” who studies food dyes and additives, who says thanks but no thanks when a well-meaning host offers to grill Martin’s turkey burger on aluminum foil to protect it from beef juices. Adrian, along with everyone else who supervises Martin, tends to say, “I’m not sure about that. We’d better check with Mommy.”

What’s worse, Martin perceives me as an arbitrary arbiter of these limitations on him, with good reason. I have loosened the strictures on corn, refined sugar, soy, and a few others. I’ve done so because (1) Martin gets to me with his constant whining, crying, and preemptive anxiety about food (see above: “I, too, am prone to anxiety”), and (2) I genuinely feel bad for Martin and want him to be able to participate to the fullest extent possible in what his peers are doing, and much of the time, what his peers are doing is eating a bunch of crap (which I say in a loving, non-judgmental way).

I’ve tried to make Martin the arbiter of his own food choices. I created a chart with four columns labeled foods I never eat(this column comprised only gluten and his food allergies), foods I try to avoid, foods I eat sparingly (“Mommy, what’s ‘sparingly’?”), and foods I eat as much as I want. My idea was to turn decision-making over to Martin, with just enough supervision to know what he was up to and intervene if “sparingly” became “once an hour.” But the chart itself morphed into an anxiety source, as Martin melted down over details like whether rice is “sparing” or “unlimited,” and how he should tell if vegetables are genetically modified (“try to avoid”) or organic (“as much as I want”). For all the progress he’s made, Martin still wants bright-line rules and certainty, and also wants those lines to fall exactly in the position that accommodates his preferences. I can’t always make that possible for him.

Recently, a friend proffered an alternative explanation as to why Martin’s anxiety targets me: I’m the one Martin trusts most, so he allows himself to release when I’m present. The meltdown Martin had last Wednesday supports this theory. He’d been out with my brother Eddie and “doing fine.” Upon arriving home and seeing me, he started complaining about his class photo, from last October. All the other kids had their eyes open and nice smiles, except Martin. The photographer picked the shot with Martin’s eyes closed and an awkward grimace. (In defense of the photographer, it is very hard to catch a decent shot of Martin.) From the class photo, Martin moved to worrying about when he almost arrived late the day in March he was to say the morning Pledge of Allegiance over the loudspeaker. Then, becoming more upset, he remembered how, first semester, the kids had to wait in the cafeteria for chess club instead of going out to play, even though school ended at 2:25 and chess club didn’t start until 3:00. By the time Martin started perseverating about his mid-year fixation with the little girl Nicole, he was in full meltdown.

That sequence, from seeing me to meltdown, took less than three minutes. Clearly, Martin had walked through the door cocked and locked, ready to fire. It took me about 20 minutes of sitting with him, calming him, and coaxing him with questions to get him to admit the real issue: It had been the last day of school, and Martin felt terrified about not seeing his school friends over the summer. I understood where he was coming from. I remember, even as a young adult, fearing the end of law school or of temporary employment because I would lose access to people whose company I enjoyed, but whom I would not see independently. Martin’s remaining social deficits mean he doesn’t get playdate invitations. The kids who play the role of friends during school recess would be likely unavailable to do the same over the summer.

Once we’d sorted out the true cause of the meltdown, Martin became apologetic. He didn’t mean to shout angry things at me, he said. He’d been like a volcano ready to explode, and the last day of school brought up bad memories in his head. So indeed, maybe he’d melted down at me because I was the safe space to do so.

The safe space who controls his life. That’s me.

Everything Is Wrong

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These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has “tanked” before—but never so dramatically, or for so long.

That’s not why I haven’t been posting to my blog. I promised honesty about the disasters as well as the pinnacles, and I’ve followed through on that promise. No, I haven’t been posting because I started a new position in August (if you’re keeping track, now I have two jobs, both part-time), and that combined with meeting Martin’s needs (the cooking! all that cooking!) has kept me awfully busy.

Yes, I’m “doing too much.” Yes, that’s part of who I am. But I love both of the positions in which I’m working. My only worry is whether I have time to meet Martin’s needs. On that point, I must be scrupulous.

The troubles began last summer, in Costa Rica. Martin started feeling like he had to pee constantly. He might finish going to the bathroom, wash his hands, and return five minutes later. He sometimes required three trips to the bathroom before we could leave the house for camp. When I asked whether he really needed to go, he might reply that he thought he needed to, or that he wanted to “adjust” his privates. Clearly, some irritation was plaguing Martin.

Next came the physical tics. The first tic was thrusting his index fingers into his nose and then his mouth. Not picking or fiddling, thank heavens, but thrusting. Often. By the time we returned to the States and Martin started fourth grade, he had added eye rubbing. He pushed his knuckles roughly into eyes, then moved his palms in circles on his eye lids. His eyes looked red and sore.

The nose-mouth tic faded, only to be replaced by a need to touch his genitals and then his backside, almost ritually. You can imagine what this did to all those fledgling friendships Martin had been assembling toward the end of third grade.

Desperate, I allowed Martin’s New York doctor to put him on antibiotics. I had to hit desperation before we tried antibiotics, because antibiotics are destructive to gut health, and poor gut health has been one of Martin’s toughest health issues. Long-term antibiotic use, however, is known as an effective treatment for PANS. We believe Martin is suffering a PANS flare, and when you see your 10-year-old constantly frustrated because he feels compelled to touch his private parts, even in front of other kids—let’s just say you’ll try almost anything.

The self-touching did fade, thank heavens, only to be replaced by a verbal tic. Beginning in December, Martin lost control of his mouth and, in response to the slightest frustration, blurted inappropriate phrases. I mean really inappropriate. It’s no longer limited to, “I hate you,” or, “Stupid!” He’s called his teacher, and me, “bitch.” He told his classroom aide, “Die, scumbag!” His classmates are “idiots,” whom he informs, “I have a girlfriend in second grade. We’re having sex.” (“Please believe me that these are not phrases that are used in our home,” I begged his teacher one day, unable to account for the behavior.) Often, after Martin says such things, he becomes upset and apologizes: “I don’t know why I said that! I knew it was coming out, but I couldn’t stop it in time!”

As is characteristic, Martin’s skin has been a mess since this ordeal started. He claws at his arms and legs, which are marked with bloody spots and recent scars. Mornings and evenings we massage him with CBD oil. The CBD oil helps but doesn’t resolve the irritation, which originates from within.

Martin’s school team—his teacher, his classroom aide (shared with another student), and his behaviorist—are terrific. They understand that the behaviors are out of Martin’s control, so he is not punished, not even for the most egregious name calling and acting out. (If I were a teacher, being called the b-word in front of other pupils, I might not have had the same self-control.) They’ve come up with a incentive-based rating system: Every day we receive a sheet rating Martin’s behavior from one-to-five stars, with a number of categories (“Did I keep my hands to myself in the hallways?” “Did I use kind words during recess?”) and a space for comments. Evenings, Adrian and I discuss the report with Martin in the least threatening way possible, and strategize for how he might do better.

Last week, Thursday and Friday, Martin finally had two five-star school days, with no inappropriate language. Saturday, my brother Eddie took Martin to the City for one of their “big adventures” and reported excellent behavior. Saturday evening Martin vomited his dinner and went to bed early. Throughout Saturday night and Sunday morning, he vomited. Sunday he voluntarily spent the day in bed, without complaining. By Sunday evening he felt better enough to start eating again, and he asked me not to cancel a pre-planned playdate Monday morning—it was the Martin Luther King, Jr. holiday, so the kids were off from school—with Ryan, a boy from last-year’s social skills playgroup.

The playdate went really well. Ryan is a year younger than Martin, with corresponding developmental delays. The two conversed fluidly, albeit about unusual topics. They were, for example, both incensed with the school district’s decision to have classes the day before Thanksgiving 2018, when that day was off in 2017; this gave them 10 minutes’ conversation or more. After a while, Martin wanted to fall back onto his standby, screen time. He asked whether Ryan wanted to play Fortnite. “I’m not allowed to play Fortnite,” Ryan replied. To my relief (I was eavesdropping from the kitchen), Martin said okay and suggested LEGO instead. They played LEGO.

Could we finally have turned a corner? I asked myself. Two five-star days at school, taking care of himself while sick, and now a successful playdate?

Hope is a train I shouldn’t always board. It sets me up for deflation.

Tuesday, Wednesday, and Thursday this week were three-star days, or worse. On several occasions Martin tried to hit other kids. To hit other kids.He’s never been a hitter. And he was throwing the word “idiot” around.

Here’s the summary of right now: Martin has been on antibiotics eight weeks. The constant bathroom-going and most of the physical tics have ceased, though not soon enough; he has lost virtually all the friends he gained last year, when he had such a tremendous spring semester. His state of being cycles from anxiety to meltdown to uncontrolled silliness. He loses control over what comes out of his mouth.

I’m trying to focus on what’s happening on a deeper level. Martin is conversant, much more than he used to be. He is self-aware, and sorry for the consequences of his behaviors. His inference skill has improved, and with it, his reading comprehension. He had such a good weekend that I’m starting to believe we might be getting close to leaving the PANS, or whatever it is, behind.

And he’s trying.

But today he told his teacher he’s going to “blow up the school.”

Here we are.

Missing Pieces

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When my sister and her daughters were visiting us in Costa Rica, I got to take care of my almost-two-year-old niece, Julie, for a half-day. My sister, her older daughter, my brother, and Martin were taking a long canopy tour. We dropped them off at 1:30 pm. I carried little Julie as she waved bye to the canopy-tour crew, then strapped her into her car seat and drove to our local supermarket, a noisy cement-floored warehouse kind of place. Julie let me set her in the grocery cart’s child seat and “helped” me shop. I handed her boxed or bagged items, which she clutched (sometimes gnawed) until she tired of them, then tossed into the cart and stretched her arms out to ask me for something new. I saw a yogurt drink my sister gives Julie, so I bought one and letter her have it on the way home. She and I laughed together when we arrived home and I discovered most of the yogurt drink on her shirt.

I didn’t want to rummage through my sister’s suitcases to find a clean shirt, so I let Julie run around shirtless. Julie seemed to do only charming things. As I used the food processor to julienne vegetables for an Asian chopped salad, she pushed a cardboard box around the floor like a train. She put items in the box and unloaded them elsewhere in the house. Whenever I announced I was putting a new vegetable into the food processor, she marched into the kitchen and demanded a sample. We went out back to swing in the hammock and dip our feet in the pool. I put a motorcycle helmet on Julie, sat her on the rugged ATV I kept for short trips through the jungle, and took photos to send her (mildly overprotective) father back in the States, to freak him out. Julie was a good sport, smiling and posing. When, after four hours of fun, it came time to pick up the canopy-tour crew, I put one of Martin’s t-shirts on Julie. It was of course wildly oversized, like a dress that brushed the floor as she tried to walk. Julie delighted in this. She giggled and danced as she lifted the shirt to her knees.

I’ve written before about the fact that I will never parent a typically developing child through the earliest years. Spending the afternoon with Julie shifted made me think less about my own loss and more about Martin’s. As I watched Julie explore her world, learn from touch, and interact with and imitate me, I grieved for Martin. He was just about turning two when Adrian and I finally realized (first-time parents!) that he was not progressing on the same track as his peers. Martin did not investigate; he stimmed by pushing a car back and forth. I did not get to prepare dinner while Martin played train with a box and stopped by the kitchen out of curiosity; if I needed to occupy him, I pulled the upright vacuum to the center of the living room. Honestly. The way to occupy Martin for an hour was to let him stare at the vacuum from different angles. Martin did not delight in new experiences, or play with me; he screamed with terror when he transitioned activities, and bolted from my grasp.

Even today, Martin cannot smile intentionally for a photograph. Instead, he grimaces and presses his tongue against his front teeth. When we try to practice for photographs, he says, “Smiling is hard. Do all kids have trouble smiling?”

Months ago, I had this exchange with a friend whose son is recovering from ASD and whose daughter, her younger child, is typically developing. They live in another country, so we don’t see each other much. She wrote of her experience parenting her daughter:

My friend:

Neurotypical development is mind blowing—the kids learn all the time & all on their own at a rapid pace

Parents do zilch compared to what we do for our ASD kids

[My daughter] thinks & speaks in 2 languages, knows so many songs & rhymes, colors, etc.

Vocabulary, questions, observations

Unbelievable

I didn’t respond. When my friend prodded me, weeks later, I wrote:

I have been meaning for a while to respond to your last set of messages. Honestly, they got me down a little bit. Martin is still not as far along as [my friend’s recovering son], but in many areas it feels like we are getting so close to typical, and I have faith that we will be there eventually. It is difficult to hear about these differences between neurotypical kids and ours, because it makes me feel that no matter how successful recovery is, there may always be differences, simply based on the developmental milestones that were lost along the way

And of course I want to believe that once he is fully recovered, it will not be evident that so much of his childhood was spent recovering from this disorder

[ . . . ]

I think what is tough for me is the idea that other children can be constantly learning. I worry that they will outpace him

My friend:

It is heart-rending to watch the [NT] language acquisition, social & attention

Just like a button is always on

By listening to me talking on the phone she will guess who I am talking to and contribute to the call

It seems to flow without effort

Even making puzzles etc., learns by watching the other kid

Me again:

I get it! That’s the type of stuff that makes me feel sad

My friend:

I get it—though both are mine I feel sad a lot for [the older]

That’s it. I feel sad. Martin has missed so much. He’s already 10 and, even as he becomes ever-more typical, has missed the chance to experience the world with a toddler’s wonder. To learn simply by playing, as learning should occur.

For both of us, some pieces will remain missing.

I took this our last evening in Costa Rica. That’s Martin, on the left, going a different direction.

When in a Rut, Turn to the Little Things

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I wrote yesterday that Costa Rica isn’t boosting Martin as much as I’d hoped. I’m going to console myself today with more musings on the little things.

About Martin’s birthday-party weekend, I wrote recently:

Although Martin’s Friday-afternoon birthday party was likely the highpoint of his weekend, it was not the highpoint of mine. . . . Sunday morning, . . . Eddie took Martin to the birthday party of a classmate (!) at an indoor sports facility. They arrived 10 minutes late, and the kids were already organized into groups for a game. According to Eddie, as soon as he and Martin entered the facility, a boy yelled, “Hi, Martin!” and another yelled, “Come join our team!”

Hearing that report, dear readers, was the highlight of my weekend.

A week before the birthday party, Adrian and I had attended the third-grade concert at Martin’s school. The third-grade orchestra performed. Martin is not part of the orchestra; he has opted to wait until fourth grade and join the band instead. (He’s been selected to play baritone! Get a load of that!) After the orchestra’s two songs, the third-grade chorus took the stage. Every third grader, about 90 of them, sings in the chorus, Martin among them. Per the instructions we’d received, Martin wore a white dress shirt and a tie. Actually, it was a bow-tie he’d chosen himself from the selection of several neckties and bow-ties I’d offered. He stood very still, in the back row with the taller kids, no fidgeting, a serious expression on his face. He sang every word. When the recorder portion of the concert arrived, each third grader lifter a recorder to his or her lips, and so did Martin. He didn’t accidentally drop his recorder; that happened to a kid one row in front of him. Martin played the recorder notes as carefully as he’d sung. He was brilliant. What’s more, the kids performed one of my favorite songs, Louis Armstrong’s “What a Wonderful World.” I almost cried.

So what was my favorite part of the third-grade concert? Martin’s beautiful notes, raised in flawless timing with the other young voices? The way he took ownership and picked his own tie? The solemnity with which he executed the performance?

No. None of that. After the concert concluded, when the parents were rising from their seats, when the teachers were entering to claim their charges, and the third-graders were kind of milling about the stage, I watched Martin casually start talking to the boys on either side of him. I recognized the two boys as friends from Martin’s classroom, and I felt certain they’d been placed together by design—exactly the type of detail to which Martin’s wonderful teacher attends. There they were, three boys together, talking to each other. Like all the kids were talking to each other. That’s when I actually started to cry. I lowered my head in embarrassment and brushed away tears. (When I saw Martin’s teacher a minute later, she was brushing away tears of her own and said, “I can’t even.”)

Last night, we went out to dinner. Martin waited for me and my mother (she’s visiting) to place our orders. Then, by himself, speaking in Spanish, he informed the server that he can’t eat gluten, dairy, or soy; placed his order; and asked the server to confirm that the appetizer and entrée were appropriate for his diet. He capped the production by making eye contact and saying, “Gracías.”

This morning, when I dropped Martin at his day camp in Costa Rica, a boy exiting the car behind us called, “Hi, Martin!” and Martin turned to respond, “Hi, Zach!”

When things aren’t going so well, as generally they aren’t right now, I have a weapon against frustration: I have the way in which Martin’s recovery has transformed into joy the moments that most parents take for granted.

I mentioned that Martin has been chosen to play baritone in band next school year. Each student who’s joining band gave the music teacher three instrument choices, and auditioned on each instrument for the teacher to decide which fit best. Martin has taken two years of trombone lessons and (at his insistence) one year of drum lessons, so I was surprised when his three choices were saxophone, clarinet, and baritone. To me, he said only that he thought those would be best for him.

Subsequently, Martin’s psychologist told me what he’d disclosed to her: That he knew trombone, and especially percussion, were two of the most popular choices for third-graders. He was worried that, with his prior lessons, he might get percussion, and then other kids would be angry or upset with him if he took the very popular choice and did not do the best job.

This was the first time, Martin’s psychologist added, that she’d seen him exhibit such foresight, and put himself so directly in the minds of his classmates. This, she assured me, was a leap in social advancement.

See how that works? My kid was unjustifiably too worried to request the instrument he really wanted—and I get a victory out of the deal.

Now He’s Wondering

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Six months ago, when Adrian and I tried to talk to Martin about his remaining challenges, Martin seemed almost indifferent. If anything, he avoided the topic.

During that conversation, which was designed to highlight Martin’s strengths along with his weaknesses, we discussed what we’re “good at” and “not so good at”—nothing about a diagnosis or giving a name to Martin’s challenges.

Subsequently, in one of our heartfelt bedtime conversations, I decided to offer Martin a more concrete focus. I asked whether he had ever heard of autism. (He thought he had.) Then I said that social situations are difficult because he used to have autism and still is catching up to his peers.

Again I was met by apparent indifference. Martin said, basically, “Oh.” I didn’t push the topic, but since then I’ve used the word “autism” occasionally: We eat a special diet to make sure the autism stays away, we take pills to finish getting rid of the autism, &c.

Martin never followed my lead and talked autism. Until now. Over the past week, Martin seems to have become interested in autism.

He’s asked questions designed to help him understand himself: “Does autism make me interested in adult topics?” Really not sure what he meant by ‘adult topics’! I’m telling myself he meant literature and history . . . . “Does autism make me see things different from other kids?” In these questions, he uses the present tense, as in, how does the fact of autism, regardless of whether it’s the current diagnosis, affect me today?

He’s told me things, for the first time, that confirm suspicions I’ve long held: Even before Martin seemed cognizant of the world around him, he was. We had this conversation:

Martin: “I hate that I’m bad at making friends.”

Me: “I know it’s still hard. Can we think about how it’s getting easier? This school year was so much better than last year. And I bet next year will be even better still. You’ve made progress. When you were little, you wouldn’t even respond to your name.”

Martin: “When I was little, I heard you calling, but I didn’t have the attention to answer.”

I’ve been trying to imagine that anguish. He recognized his name yet had no means to show us.

He’s forced me to impart some elementary biomed theory, as when he asked, “Why was I born with autism?” I responded by attempting to explain that something hurt his wellness system, whether before he was born or after. I referenced his uncles to explain that troubles with wellness systems run in families: Both my older brothers have asthma and environmental allergies, and one also has food allergies and has suffered from chronic bronchitis. These were perhaps the responses that left Martin looking the most quizzical.

Finally, he’s prompted me to reflect on my own feelings. He asked, “Do you think it’s fair that I used to have autism?” I started with honesty: No, I do notthink it’s fair that my son got autism. Then I tried to temper that answer by modeling gratitude. “Can you think of a friend who still has autism?” I wasn’t sure whether he would respond; we’ve never used the word “autism” in reference to any of his friends. But almost immediately, he named a little pal of his who uses “quiet voice,” i.e., whose verbal ability remains limited. I asked whether he thought his friend would like to be able to talk more, like he can now.

Martin said yes, that he thought his friend would like to be able to talk more. I said that I’m thankful for Martin’s hard work and progress.

My boy—whose verbal skills once were limited to echolalia but who, through biomedical intervention, has become able to express himself meaningfully through spoken language—guessed that his friend would also like to acquire spoken language.

For me at least, that answer gives lie to any neurodiversity movement that objects to biomedical interventions aimed at alleviating or eliminating autistic symptoms. In December 2014, I wrote on this blog: “[I]n all my experience communicating and working with other ASD families, I am yet to hear from anyone who regained his/her health biomedically and subsequently says, ‘I wish we hadn’t done this. I prefer being autistic to being neurotypical’.” I wonder if the day is approaching when I can count Martin among those who would never say, “I wish we hadn’t done this.”

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That’s Martin. I promise. It is.

He Does Not Mean What He Says

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In a Facebook discussion group today, an uncomfortable topic arose: when kids on the spectrum become fascinated with and/or talk inappropriately about race.

This happened to Martin. For about six months last year and this, Martin made race-based remarks that he knew were untrue or would displease others. He told me and Adrian that “Hispanic kids aren’t as smart.” (As long-time readers of this blog know, Martin is both Hispanic and Spanish-speaking.) He pointed out to his best school friend, repeatedly, that she was the only black student in their class. In the most disheartening incident, the details of which remain unclear, I think Martin cost me an emerging friendship. I had grown closer to a woman from church, who happens to be black. We were enjoying regular lunch dates and pedicures together, and one of her daughters, a middle-schooler, babysat Martin sometimes. One evening I drove the daughter home after she’d spent a few hours with Martin. She was unusually subdued but mentioned no particular troubles. The next Monday I texted her mom to confirm a lunch date and received a response that she was too busy to meet. I replied “no problem” and suggested moving the lunch to the following Monday. My friend did not respond to that text, nor to the next, nor to a request whether her daughter could watch Martin again, nor to several additional attempts at follow-up. Her family, before these events, had switched congregations to accommodate a work schedule, so I had no chance to see her in church. Several weeks later I was walking in town and saw my friend and her daughters across the busy main drag, heading the opposite direction. I waved. Whether they saw me, I do not know. They kept walking, briskly.

When I realized what was going on and asked Martin whether anything had transpired with the daughter, he said no. Tellingly, though, he also slid into partial shut-down mode—that place where he changes topics, or says, “I don’t want to talk about that,” or just becomes agitated. Once Martin begins to shut down, I rarely get any additional trustworthy information from him. To this day, I do not know what he said or did not say to my friend’s daughter. My suspicion is that he commented inappropriately on race or race-related issues, and that the girl assumed our family holds antiquated, wrongful opinions.

I alluded to this difficult time in a February post titled “Current Issues.” I wrote that Martin had been “impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome” and that:

After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her ‘racist’.” [Nicole is not the best friend mentioned above, and is Hispanic, not black.] . . . 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’.”

After six months or so, Martin’s inappropriate race-based comments faded. (Thank heavens.) Martin tends to cycle through fascinations: the Beatles, trains, geography, world flags, skin color. His race comments fell within that pattern, and also within a larger habit with which we still struggle, i.e., opposite talking. When Martin becomes nervous or agitated, he blurts out something far away from what he really means, often precisely the opposite. If I tell him he’s done using his iPad for the day, he might exclaim, “No iPad, ever again! Throw it away!” Last weekend, we were zip-lining with a group that included three other kids, two girls and a very kind boy who spoke several times with Martin. Made nervous by the attention, Martin eventually blurted, “You should stop talking and go away.” Plainly Martin did not mean what he said; after the excursion was over, he sought the boy out to say he’d had a good time with him and was glad he came. As I wrote in February, sometimes words come into Martin’s head that he knows he shouldn’t say, but he can’t stop them before they come out of his mouth.

At least we have reached a point where Martin catches himself immediately. As soon as he says, “You’re the worst mommy in the world, and I don’t love you,” or, “Let’s not go out to dinner anymore, ever,” he covers by adding, “Kidding! I’m just kidding! I’m not serious.” I would, of course, prefer that Martin catch himself before issuing the offensive or nonsensical words instead of after. Maybe soon? As long as he is still covering with an immediate follow-up, I am trying to get him to switch from “just kidding” to a response more like, “I’m sorry. I didn’t mean to say that. Sometimes the wrong words come out.” But because nothing can be easy in AutismLand, the problem with my proposed new response—“I’m sorry. I didn’t mean to say that”—is that Martin already apologizes too much, habitually. When interactions come off foreign to him, he finds it most expedient to assume he’s made a mistake and to apologize. Helping Martin navigate social encounters, as he increasingly seeks them out, can be equally puzzling for me.

I am so thankful that Martin has closed the door on fascination with race and ethnicity. I hope the door stays closed for him. Unfortunately, I can’t put the chapter behind me, yet. I have let some months pass since my last attempt to speak with my church friend. This fall, when we return to the States, I will renew my efforts. It’s not about saving the friendship, or what she thinks of me and my family. Instead, in today’s USA, I think, racism and anti-Semitism and all sorts of hateful speech have been normalized. I can’t let the episode go if there is any suspicion that my son, however unwillingly, contributed to the atmosphere of pervasive racism. I want to explain. But what will I say? Even for parents of spectrum kids, it’s so hard to understand what would prompt a boy from an Hispanic household, whose parents speak out for equality and intentionally seek relationships outside their own community, to make seemingly racist comments that he doesn’t even mean. To explain that to a person with little experience with autism, to whose own child one of these comments may have been directed? I don’t even know where to begin.

Dropping Him off, Into the Unknown

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Tough few days here, in the process of Finding My Kid.

In his life, Martin has had three “drop-off” play dates. The first was more than a year ago, when I left him with one of my friends who has a typically developing son Martin’s age. Though my friend generously spared me the details of the 90-minute play date, I could tell at pick-up that Martin had played alone (and fussily) and ignored her son, who ended up resenting Martin and teasing him at school. The second drop-off play date was a couple months ago, when I left Martin at his friend Jonathan’s house. Jonathan, who has some special needs, is the oldest of four boys (I mentioned them last year), and two of his younger brothers had friends over also. I’m not sure how many kids were in the house. Maybe eight or nine. A bunch of adults were there, too, watching the Winter Olympics. Martin disappeared immediately upstairs with Jonathan. I had no trouble leaving; Jonathan’s mom knows Martin well, and with her houseful of boys, I think she could handle just about anything short of a nuclear explosion. Whatever Martin did while there, he was happy when I returned, and Jonathan was happy, and all was well.

Last Friday was the third drop-off play date. Martin was invited to go after school to the home of Manuel, his school chum who, despite some challenges, is more or less typically developing. Manuel’s grandmother and mother both urged me to let Martin stay alone. I did so, albeit with reservations that they might not understand the extent of Martin’s challenges. I left and texted my friend Stacey:

I just let Martin go to a drop-off play date and now I’m too nervous to do anything.

I don’t want to get back and find out that he freaked or had a meltdown or something, ugh.

I’m seriously hovering a few blocks away in my car in case I get a text.

As it turned out, my reservations were well-founded. Although the grandmother (who supervised) was kind and generous with her words, Manuel began complaining as soon as I returned to retrieve Martin. Manuel said Martin hadn’t listened. Martin had hit him with the sword. Martin was running into the street. Martin didn’t want to play his games. And so on. And so forth. I could see for myself that Martin was hyperactive and agitated. I thanked Manuel and his grandmother for the play date and hustled Martin to the car. How did he think the play date went? I asked. So-so, he responded. Some good and some bad.

From Manuel’s perspective, I have to believe, the play date was more bad than good. We didn’t see Manuel again until Monday at school pick-up, when he rejected Martin’s overtures to play, for which his grandmother was apologetic. Tuesday, Martin appeared sad when I picked him up from school. (At that time, Manuel was trying to play handball with the rowdier boys, an activity in which Martin shows no interest.) Martin refused to disclose anything that might be making him sad. More than an hour later, when I was dropping him at church for Kids’ Klub, he said, “Why didn’t anyone want to play with me at recess?” I asked a few questions and learned that Manuel, Lucas, and the two classmates who usually talk Minecraft with him all said no when Martin asked them to play.

Manuel liked playing with Martin before Friday afternoon. Thereafter, not so much.

If I want to appease myself, I have plenty reasons why the Friday play date went poorly. For example:

>    Manuel’s grandmother had invited Martin specifically to play video games. Martin was so much looking forward to the video games; Manuel has a gaming system that Martin thinks he might want for his birthday, and video games are one arena in which Martin feels comfortable with—equal to?—other kids. As it turns out, the family is half-packed to move, and some cable required for the video gaming system had gone missing. No video gaming occurred.

>    Martin expected to play with just Manuel. When he arrived, Manuel suggested that they follow his usual practice of meeting two other friends as they got off the school bus. Martin knows the other two boys and agreed readily to include them, and in the end they stayed only 15 minutes. Still, their presence created another change in plans.

>    Martin’s palate expander was falling out again. The darned thing was hanging, detached, on one side. Martin kept trying to reattach that side, and he could barely speak. The entire device finally detached during the play date.

>    Manuel is moving next month. Martin is full of anxiety about this. Anxiety, in Martin, can manifest as anything from confusion to silliness to defiance.

In the end, my excuses don’t matter much. The Friday event went poorly because Martin couldn’t manage to play well with others. We still have work to do on social skills.

Or do my excuses matter? How much mischief did the anxiety cause? Last night I met with Martin’s psychologist. I mentioned the play date debacle, and why I thought Martin might have had more trouble than usual. The psychologist said, “That explains these pictures he’s been creating.” She showed my two sheets. On the first, Martin had drawn a car driving away, with Manuel inside and Martin outside yelling, “Manuel!!!!!!!” On the second sheet, Martin had drawn the outline of Florida (where Manuel is moving), a car packed and ready to depart, and Martin and Manuel saying goodbye to each other.

I wish something could be easy for my kid. Anything at all.

Darling Little Obsessions

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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.

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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.

On Working Whilst Biomed-ing, and Yes, I Just Made a Verb Out of Biomed

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Last month, in response an earlier post titled “Current Issues,” I received this comment from a reader:

Long due note:

I’m a regular here. We are sailing the same long road with my daughter who is three-and-a-half. Your overwhelm me and encourage at the same time. I feel like you are a super mom to be doing all that you do. I’m shattered most of the time and come back to you for hope and guidance. I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed? I know every kid with autism is different, but I see Martin as hope and would like to get some perspective on where he started to ensure I’m keeping my recovery stories aligned.

One another point of interest is how has going back to work been? I took a brief break immediately after diagnosis and came back. I absolutely love my job and the benefits that come with it to enable us in this journey but guilty nevertheless for not making the choice to stay back.

Once again, to me you are the perfect mom I wish my daughter had. Some day I will get there.

I responded:

“You . . . encourage me at the same time.” Thank you so much for this note. I write this blog to encourage others, as well as to provide the truth about when recovery isn’t going the way I envisioned it should. If at any point I’ve come off as “the perfect mom,” I apologize. I am far from that. Like you, I’m struggling to find my way along this path. I have written from time to time about where Martin started, but for you I will put together a post about exactly where we were when he was diagnosed. Just last week, I happened to be cleaning my office and ended up reviewing his heart-wrenching initial neurodevelopmental report, so I will start from there.

This kind reader is getting two posts in response to her comment. The description of where Martin started requires more time, because in order to make sure I get it right, I want to review not only my contemporaneous notes of Martin’s behavior around diagnosis, but also those first neurodevelopmental evaluations. In this post, I will answer her easier question, “How has going back to work been?”

When Martin was born, I was not working in paid employment; I was on a break from my job with a large law firm in order to complete my MFA in fiction writing. I finished that degree and then returned to the large law firm, albeit part-time, in late summer 2009, when Martin was 14 months old. Primarily, I was able to work from home. (Despite the bad reputation of large, competitive law firms, mine was, and remained, accommodating to my scheduling needs and desire to work remotely. For that, I am grateful.)

By the following summer, when Martin turned two, Adrian and I realized that his behavior was “off” and trending farther from the norm. We received a tentative autism diagnosis in September 2010. The diagnosis was made official in April 2011, after two months of neuropsych evaluation. By that time, we had already started biomed. I continued working for the large law firm, frequently exhausted, until January 2012, when I finally quit in order to focus on Martin’s recovery.

I stayed away from paid employment until October 2014, when I switched direction entirely and took a part-time gig litigating for an upstart, boutique law firm. That’s still where I’m working today. The scrappy new venture suits me (current me) much better than the white-shoe firm where I spent 13 years defending large corporations. Our little collection of lawyers represents non-profit organizations and consumers, in the areas of food safety (including pesticide residue), protection of farmed animals, greenwashing, and keeping toxins out of household products. My hours are, generally, flexible, and most of my work can be done from home; I commute only once or twice per week to our offices in Brooklyn. On those days, a caregiver picks Martin up from school and handles after-school activities, dinner, supplements/antimicrobials/etc., and bedtime. Also, Adrian and I employ a housekeeper, who comes for a couple hours each weekday morning to take care of laundry, the kitchen, and cleaning.

Despite those facts, I regret to inform you—here, I neither request nor think I deserve sympathy—that I have reached the depressing conclusion that it is not possible to do complete biomed and also work full-time, or half-time, or any more than minimal part-time. At least it is not possible for me, at 45 years old and needing the sleep that I lacked for the first years of Martin’s recovery. Although I have household help and childcare assistance, the tasks that still fall upon me include sourcing (in some cases, growing) clean food, cooking, baking snacks and desserts, trial-and-error with Martin’s diet, ordering and tracking and administering supplements and antimicrobials, coordinating doctor appointments and recovery-focused activities, research, and (this I consider important) facilitating quality time for Adrian and Martin. Regarding Adrian and Martin, I like them to be able to go to the movies or go shopping or visit a restaurant together and feel as typical as possible. Preparation for these activities entails a lot of checking menus on-line and packing snacks and sending activities like books, etc. (No, Adrian does not help with these tasks. Read this post.)

On a school day, I get up at 5:40 to heat and package lunches, prepare breakfast, organize and administer pills and drops, and shepherd Martin’s snail-pace preparation for school. Martin’s after-school activities—which include taekwondo, chess club, music lessons, psychologist visits, social-skills play group, and neurofeedback—can feel all-consuming, even before adding homework, with which he needs guidance. I keep Martin busy, because he still doesn’t have enough friends for regular play dates, and when his hands are idle he’s mostly whining for his iPad. Martin’s schedule means that, unless someone else is handling after-school activities, I have time only for finishing up the last parts of dinner preparation. Any minutes remaining after Martin is in bed I dedicate to cleaning the kitchen and prepping for breakfast, baking snacks if we are running low, putting together Adrian’s lunch for the next day, and if I’m lucky, watching a show or the news with Adrian.

Given all that, unless someone else is on duty after school, I have exactly six hours “free” per day, the time between when I drop Martin off at school and when I pick him up. During that time I go to the gym (often, this is aspirational), shower, grocery/food/farm shop, get dinner mostly prepared, set appointments, research treatments and diet, blog, volunteer time for the special-education PTA and church, and—work. Many days, not much time gets left for work. Many weeks, I try to cram all the lawyering into the one or two days I’m able to go to the office. Furthermore, when work, by necessity (lawyers don’t always have control over their schedules), spills into “Martin” time—say, when I have to take a conference call from a playground, or an emergency project precludes me from completing reading exercises—the guilt becomes oppressive. Why, I ask myself, do I even bother working? Why, when I am within the very lucky minority of biomed parents whose spouses earn enough to cover expenses, do I sacrifice any of Martin’s due for my own selfish craving for a life apart from autism recovery?

Around Christmastime, I sat down with the chairman of our little law firm and told him I need to reduce my work even more and, to the extent possible, restrict my activities to writing projects that can be anticipated in advance, in order to keep my schedule regular. The conversation followed upon a difficult November and December, during which I oversaw document discovery, dealt with witnesses and clients, prepared our office for a contentious mediation, and traveled. I began the conversation, “I think you know I’m done for.” I’ve been mostly successful, since then, at reducing the workload and increasing predictability, but it remains a struggle. The chairman wants more from me; I enjoy the intellectual challenge and the opportunity to think about something other than, say, Lyme disease and vision therapy. Still, I have been given the tremendous opportunity to let Martin’s recovery take precedence. That gift must be honored.

So there you have my ugly truth. Despite a supportive husband, a housekeeper, competent assistance with childcare, and an employer that understands my need for flexibility, I have trouble working even part-time.

Dear reader, you think I am the perfect mom? I look at my church friend G—, who fully recovered the oldest of her five children while also working part-time, by necessity, to supplement the salary of her husband, a public servant. I look at G— and think, That’s the mother my son deserves, for I fall short in so many ways.

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Martin following his cousin up the mountain (no path required), Triberg im Schwarzwald, Germany.

We Feel Terrible That We’ve Done What We’ve Been Told Not To

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This morning I lost my temper with Martin. I’m not pleased about losing by temper, but it happened.

We were in the last stages of getting ready to leave for school—which for us, 90% of the mornings, means getting ready to be late for school. I had executed the morning routine well, and despite extreme dawdling during breakfast, we managed to reserve 20 minutes to get Martin dressed, hair-combed, teeth-brushed, and jacket-clad. He took eight minutes of that time to sit on the toilet and yell, “Privacy please!” every time I knocked. Five minutes or so were devoted to dodging my attempts to get him dressed and instead asking senseless “What if?” and “Would you want?” questions: What if you’re in a restaurant and the host takes your drink order but then the waiter brings you the drink? Would you want to eat at a restaurant like that? What if two hockey teams are playing each other and wearing the same uniform so you can’t tell them apart? Would you want to watch a game like that? More time was wasted as Martin grabbed his freshly cleaned glasses by the lenses, so that I had to return to the kitchen for another lens-cleaning wipe. When I asked him to brush his teeth, he was chit-chatting instead of paying attention, so he went to the sink and washed his hands. Then he insisted on another trip to the toilet, after which he returned to the sink with his pants around his ankles. When I told him, “Pull up your pants so we can leave,” he heard only “pants” and so, without further thought, used his feet to take off the pants.

That’s when I lost it.

“Martin!” I barked. “You have got to pay attention! Sometimes you must listen! We cannot be late to school every single day!”

He laughed, which he does when he’s nervous, or overwhelmed.

I grabbed the pants off the floor and thrust them into his arms. “Put on these pants! We have got to leave!”

He clutched the pants and averted his eyes. We had passed the point of meaningful communication.

Realizing that I needed to cool down, I left Martin in the bathroom and returned to the kitchen.

Now I was the one overwhelmed.

I felt agitation. A lot of agitation.

I’ve written before that, when we are late, the problem is me. That’s true. But on this occasion—if I may plead my case—I had done everything right. I got up on time, 5:40 a.m. Adrian’s bento boxes were prepared last night; all I needed to do this morning was heat his lentils. Martin’s veggie-meatballs (turkey) were ready last night, too; all I needed to do this morning was pop them in the oven. Beans were in the coffee maker, for Adrian’s coffee; all I needed to do was add water. My Bodum pot stood ready, with Hobee’s tea already in the steel basket (I’m off coffee, stupid heartburn!); all I needed to do was add boiling water. Even Martin’s breakfast was half-prepared; I cleaned and grated the sweet potatoes for his fritters last night, and packed them in ice water. Martin was done with breakfast and in the bathroom at 7:50 a.m., 20 minutes before our scheduled 8:10 a.m. departure.

Despite all that preparation, we were going to be late for school. Again.

It took only a few deep breaths before my agitation gave way to disappointment, in myself, for having lost my temper.

Two memories came to mind.

First, a passage from Naoki Higashida’s wonderful book The Reason I Jump. The teenage author, who is mostly non-verbal and uses a keypad to communicate, writes (of himself and others with autism):

Me, I’m always being told off for doing the same old things. It may look as if we’re being bad out of naughtiness, but honestly, we’re not. When we’re being told off, we feel terrible that we’ve done what we’ve been told not to. But when the chance comes once more, we’ve pretty much forgotten about the last time and we just get carried away yet again. . . . But please, whatever you do, don’t give up on us. We need your help.

Second, an experience on a New York City subway. One night, after a theater date with friends, Adrian and I were on the subway after midnight, seated across from a woman and a toddler. This story is not meant to judge the adult (mother?) for traveling after midnight with a toddler. She may well have left a second-shift job and retrieved the girl from a sitter, or tended to a family emergency without notice. The little girl was obviously exhausted. She held herself together for two or three stops, then started to cry. The woman said, “Cut it out!” Her tone was menacing. The toddler stopped the tears momentarily, whimpered, and started crying again. The woman grabbed and shook the girl’s chin and yelled, “You ain’t got nothing to cry about.” Finally she threatened to slap the girl. Without saying anything, I stood up. I don’t know what I meant by standing up, maybe just to suggest that other adults were present and were prepared to intervene. The woman scowled and fell silent. Somehow, the little girl stopped crying, and the moment passed.

My heart went out to the girl. “She can’t help it!” I wanted to say. I should have said. What toddler could be awake after midnight and control her behavior?

That’s Naoki Higashida’s point, too, I gather: What child with autism (or in our case now, ADHD) can conform his behavior to neurotypical specifications?

The fault that we are late is Martin’s, I thought, but it isn’t his fault that he’s at fault.

Does that even make sense?

I returned to the bathroom and apologized for raising my voice. I was frustrated at being late, I said. I wasn’t angry at him. I knew he was trying. I was glad his pants were on again. How about if I helped him tie his sneakers?

Martin sought two or three assurances that I wasn’t angry. I gave the assurances.

We were late to school again. The world didn’t end.