Category Archives: Life in Society

Alone in the Park

Posted on by findingmykid
Reply

Beginning this spring, we let Martin ride his bicycle, alone, to the park a mile from our house. Martin recently turned 11. We started allowing this when he was 10. The journey to the park involves four streets: up our hill, right turn, another right turn and half mile down, left turn onto the park’s road. The park has tennis courts, fields, multiple playgrounds, a skateboard/bicycle course, and a large community pool (which Martin cannot enter without an adult and entry fee). He takes a bottle of seltzer water, in a holder on his bicycle.

Martin must wear his GizmoWatch when he goes, he must answer when we call, and he must call us if he leaves the park for any reason. The GizmoWatch is connected to an app on my iPhone (and on Adrian’s, and on my brother Eddie’s) and has a tracking device; I can set the app to notify me if Martin leaves a given area, such as the park and surrounding neighborhood. So long as the watch is turned on and is with Martin, I can also use the app to pinpoint his location.

Martin’s primary motive in riding to the park seems to be to see other kids. He’s an only child, and he doesn’t get m(any) play date-invitations. Once my brother spied on Martin at the park: Martin was riding his bike around and greeting other kids if he saw them. Twice Martin has returned home almost immediately and announced that there were no kids at the park. Other days he’s stayed at the park for up to three hours. When I call to check on him, those hours-at-the-park afternoons, I hear him talking to other kids, or I hear kids in the background. Sometimes Martin tells me what he’s doing—“I’m just here talking to friends,” or, “I’m riding in the skate park”—and other times he says only, “I’m busy.”

If he leaves the park to ride around the neighborhood or to accompany a friend home (he’s not allowed to go inside unless I know the family and give permission), he is conscientious about calling, maybe conscientious to a fault. He phones me block-by-block: “Hi, Mommy, I’m riding on A Street now.” “Hi, Mommy, now I’m on B Street.” “Mommy! I’m in the middle of C Street.” I don’t mind answering my phone every two minutes. Better that than not hearing from him.

Adrian says that if Martin were typically developing, he would not allow him to spend hours at the park unsupervised. But for the reasons I mentioned above—only child, lack of play dates—plus wanting to support Martin’s burgeoning desire to be independent and interest in other kids, Adrian says the benefit in Martin’s case outweighs any detriment from stranger-danger. We are blessed to life in a safe community, and the park is generally populated with neighborhood adults, including some who know Martin, so I agree with Adrian. As an added benefit, being at the park means Martin is not wandering around the house asking, “What can I do?” and claiming boredom because the only thing he wantsto do is use an iPad.

I do, however, worry about what’s going on with the other kids. Are they being kind to Martin? Are they teasing him? Will someone, just to be mean, take or damage the very nice bicycle he received as a gift last year? Martin has a better sense now of unkindness and teasing, but he rarely knows how to respond when he experiences such behavior. Often he lets himself be bullied and we hear about the event only at bedtime, when he’s crying because of what another kid said or did.

I’d feel more comfortable if one of us were right next to him, all the time. That’s clearly not what he wants. So off he goes.

And while we are talking bicycles, maybe you will enjoy this seven-year flashback as much as I did: Special Guest Author: My Mother on How Martin Learned to Ride a Bike.

Target

Posted on by findingmykid
1

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

Posted on by findingmykid
3

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.

How It Lingers

Posted on by findingmykid
1

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.

He Does Not Mean What He Says

Posted on by findingmykid
2

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.

Otra vez, aquí estamos. Hasta Septiembre

Posted on by findingmykid
8

We are back in Central America. Alas, not in Nicaragua, el país más bonito de mi corazón. We planned to return to Nicaragua this summer, and held fast to that plan as long as we could. During June, however, the political violence reached as far south as where we stayed last year, in the Department of Rivas; north of Rivas city, a young man was killed defending a tranque against pro-government forces. Shortly thereafter, the director of Martin’s day camp (and one of Martin’s Nicaragua-based cheerleaders-in-chief) notified me that they would likely not have enough kids to run camp this year. At that point, we canceled our summer house rental, sent part of the deposit to a trusted friend in Rivas to distribute among local families most in need, and hastily assembled a new summer.

This is of course an autism-recovery blog, not a political blog, and I am no expert on Central American politics. I will limit my comments about the Nicaraguan situation to this: Daniel Ortega is unleashing this violence upon the very families who, a generation ago, fought for the right to elect him. The people of Nicaragua don’t deserve these troubles. Please look for ways to support Nicaraguan self-determination.

So Martin and I find ourselves on the other side of a border, in Guanacaste, Costa Rica (with hopes to cross, later, into Nicaragua at Peñas Blancas and visit our friends there). You may recall that Costa Rica was where I first noticed how well Martin does in the Central American environment. Even as we mourn our time in Nicaragua, I am grateful to be here: grateful that we were able to rent a house on short notice, grateful that I found a community with a day camp, grateful for daily saltwater swims and abundant  sunshine. This area is populated by gringos here temporarily, chasing the pura vida, and I don’t have much hope of finding the same kind of lasting connections we made in Nicaragua, where the gringos tend to be long-term ex-pat residents. No worries, though. Everything else is grand.

Martin started day camp last week. I had corresponded in advance with the camp director about Martin’s food and environmental allergies. (When you’re talking about Central American activities, “allergic to horses” becomes surprisingly relevant.) The tougher conversation, about Martin’s real challenges, I left to have in-person; giving advance notice, in writing, of Martin’s social and attention deficits tends to create an image that can be hard to shake, even after Martin himself appears. I remember still the remark of a German relative, years ago, when she first met Martin: “Als ich das Wort gehört habe—Autismus—habe ich mir was ganz anders vorgestellt”: “When I heard that word—autism—I imagined something else entirely.” We no longer have the A word to fear, but preconceptions nonetheless pose dangers. The first day of camp, I stole the director for a few minutes. I said that Martin had some previous language delays, and because he is still catching up, he struggles with social interactions. He wouldn’t give them any trouble about participating, I explained, but we do worry about bullying and hope they will keep an eye out for that.

“That will be no problem,” the director replied. “We’ve had all kinds of kids at camp. Even kids with autism.”

“Oh!” I said. “If you’ve had kids with autism, you can certainly handle Martin. It’s nothing like that.”

Dropping Him off, Into the Unknown

Posted on by findingmykid
1

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.

A New Era

Posted on by findingmykid
1

Today, Martin got braces on his teeth. He’s nine years old, almost 10. His permanent teeth haven’t all arrived, yet. We’ve known for years that braces would be in his future. His teeth are all over the place. They started with gaps and have pushed farther outward with his habit of pressing the front teeth against stainless-steel straws and drinking-glass rims.

Still, the decision to get braces now did not come easy. (As if any decision came easily, in Autismrecoveryland.) Some parents in my circles have complained of regressions and/or adverse reaction to the materials when their children started orthodontics. Martin is still growing. On the other hand, we understand that corrective orthodontics may help with Martin’s lingering pronunciation difficulties. (From Martin, “three” emerges as “free.”) We’d also like to have as much treatment accomplished as possible before he enters middle school.

I myself work bulky braces—those horrendous old-fashioned brackets attached to metal bands that wrapped around the teeth, including the front teeth—from age nine to age 13.

img_0453.jpg

Sorry for the poor resolution of this photo. I had to search the internet to find evidence that these types of braces existed, once upon a time. This is how my mouth looked for four-and-a-half years.

I am relieved that orthodontics have evolved at least enough to spare Martin that ordeal. After some research, Adrian and I decided on orthodontics with the Advanced Light Force (ALF) appliance, which apparently utilizes the jaw’s own growth patterns. Martin’s had the ALF palate expander for several months already. Several troublesome months. At first his fingers constantly found their way into his mouth, and the delicate device popped out. One was damaged in the process and required an expensive replacement. We forged ahead nevertheless. The palate expander is back in his mouth, and now brackets are attached.

IMG_0447 2

Also not the best photo! Martin was in no mood for a photo session after getting his brackets. Still, it is plain to see that he’s going to have a more comfortable time of orthodontics than I did.

Starting orthodontics reminds me that, physically, my little boy is verging on pre-teen. Though he’s still nine, his size-medium (“US 10-12”) pants are revealing glimpses of his ankles. I’m getting rid of t-shirts weekly because they no longer reach his waistband. The daily grind of autism recovery can make the days feel long and slow; the realization that childhood won’t last forever comes upon me quickly.

Difficult Come, Easy Go

Posted on by findingmykid
4

Two years ago, I wrote my only post ever titled in all-caps: “MARTIN MADE FRIENDS.” I described how Martin finally managed to make friends in a scenario not arranged by adults: He rode his bicycle across the street to play with the twin girls who live there. I also admitted that the friend-making appeared limited to the specific situation—the same week, Martin bombed a play date and failed to speak to another neighbor girl. I predicted that making friends might be one of those skills that pops up, disappears, and then reemerges to stay.

The friendship with our twin neighbors faded, once other kids got involved. That fall, Martin transferred to the same school as those girls, and they joined the school-bus bullying fiasco. Martin tried sometimes to make friends at recess, but his classmates rejected him, and we were left with only playmates from his social-skills group and former special-education school.

Twenty-four (long) months later, fledgling friend-making is back. A month or two ago, as Martin and I were walking to the car at afternoon school pick-up, a boy ran up and said, “’Bye, Martin! See you tomorrow.” Martin replied, evenly, “’Bye, Manuel.”

“Martin,” I asked in the car, “who was that boy?”

“That’s my friend Manuel. He just moved here from Texas.”

“Is he in your class?”

“No, I met him at recess.” Martin said this matter-of-factly, as if he were constantly making new friends on the playground.

I asked Martin whether he’d like to invite Manuel for a play date. He replied that he would.

The next afternoon, I introduced myself to Manuel’s grandmother, who picks him up from school because his mother works. The grandmother said, “Oh, you’re Martin’s mom! Manuel talks about Martin. Let’s get them together.” We arranged a drop-off play date, at our house. The play date lasted two hours, which is a long time for Martin to hold it together and pay attention to another kid, but he managed, and the affair went pretty well (some bumps, resolved with agreement to watch a spooky video together). Thereafter, Martin reported playing with Manuel at recess several times. Once he said, sadly, that Manuel had decided to play soccer with some other boys instead. I suggested that Martin consider asking to play soccer too, but he said he was sure Manuel and other boys would say he couldn’t play. The next day, however, Martin announced that he indeed asked to play soccer, and that the boys had said yes, and that he had played soccer. I was overjoyed.

Most recently, Martin invited Manuel to “bring a friend” day at his taekwondo school. I consider this Martin’s first self-generated, sustained friendship. Manuel is a cheerful and polite boy, slightly clumsy and overweight, in a mainstream classroom and receiving limited (very limited, by our standards) special-education services. I don’t envision him and Martin ever becoming the coolest kids on the playground. That’s fine by me. Adrian and I were hardly cool kids, either.

Martin plays Minecraft on his iPad. Back in February, he asked me to buy him a particular Minecraft book he’d seen two classmates reading. I did so gladly, because Martin hates reading, and I’m happy for anything that gets him looking at words. Then Martin asked for a plush Minecraft zombie, and then for a plush Minecraft baby zombie. I hesitated, as Martin is nine years old and doesn’t need any more stuffed animals, but relented on the basis that the Minecraft theme might be a way to connect with other kids. I made the right choice: Martin’s teacher and behaviorist both said that a couple boys from class asked Martin to play with his zombies, and subsequently that the three of them were sitting together talking Minecraft at lunch and snack time. Martin himself said, excitedly, that he’d played “zombie chase” at recess with his “friends.” His request for the plush toys appears to have been calculated, for the purpose of attracting positive attention. Good work.

Martin also has reported that playing more with Lucas. Martin has known Lucas since fall 2016, when they shared a desk, and we’ve attempted play dates with him before, without too much success. Now Martin says the two of them have invented a game that involves hanging upside-down on the playground slide and yelling, “Help me!” (Um, okay . . . .)

In sum, over the last couple months, Martin has cultivated a playground repertoire. He plays with Manuel, he engages in Minecraft-related activities with classmates, or he hangs out on the climbing equipment with Lucas. When none of those options is available, Martin says, he sits and reads a Minecraft book. Last year he spent virtually every recess alone on the swings. The swings have been removed due to ongoing construction at Martin’s school. I was scared of what that removal could mean for recess, but he seems to be weathering the storm. He’s made a few friends.

And now—just a few months after moving here, Manuel’s family has decided to leave. The cost-of-living in our area is too high, Manuel’s mother says, and they aren’t able to make ends meet.

Martin is losing his first real, independently found friend. He’s crushed.

So are we. Adrian asked me, “Could we lend them money? Help pay for their apartment? Anything?” He wasn’t serious, of course. We can’t go around sponsoring families to make sure Martin has friends.

Even if we might do just about anything else.

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

Posted on by findingmykid
1

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.

IMG_0346

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