Alone in the Park

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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

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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.

Okay. Some Things Are Right

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I’m sorry. I left you hanging. I wrote a post titled “Everything Is Wrong” and then stopped posting. I’ve received so many emails over these last many months, expressing concern and wondering what happened.

January 2019, Martin “taking care of” the daughter of a friend.

I’m here to say that everything is no longer wrong. We have struggled through one of the most difficult years of Martin’s recovery from autism, and we are not back to baseline yet. The kid we had in June 2018—the one who made a handful of friends on his own and was “totally part of his class”—that kid is showing up a lot of the time, but he still hasn’t returned entirely.

Here’s the history, in brief: Last summer, in Costa Rica, Martin tanked. In order, fluidly, with overlap, the following sequence manifested:

–     Martin started asking to go to the bathroom constantly, sometimes only a minute or two after the last time he’d gone to the bathroom.

–     Martin’s genitalia started to bother him, and he wanted to touch/adjust, all the time, everywhere.

–     Martin developed physical tics, including putting his fingers ritually into his nose and mouth, and eventually adding his backside to the mix, then his elbows, prompting my brother Eddie, a Red Sox fan, to declare that Martin was learning baseball batting signs.

–     Once Martin got back to school, the physical tics were replaced by a kind of verbal tic, which made him blurt inappropriate words and statements.

–     Martin became obsessed with Nicole, a girl in another grade, singling her out whenever he saw her, even asking to visit the restroom so that he could bang on her classroom door.

These actions frightened little Nicole, who’s about half the size of Martin. That’s about when, on the advice of Martin’s New York doctor, we put him on antibiotics, the last resort. (Antibiotics may bring a PANS flare under control, but they also decimate gut bacteria.) Eight weeks after we started antibiotics, I told you everything was wrong.

Take a deep breath.

February 2019, Beaver Creek, Colorado. Martin (r) ice skating with his cousin Luke (l).

I don’t know whether the antibiotics helped. Based on timing, I don’t think they did. At the end of January we traveled to California to see Martin’s MAPS doctor, who created a plan for phasing out the antibiotics after three full months of use. She changed a number of antimicrobials, strengthened a few others, added detox helpers, encouraged us to hang in there.

We hung in there. So did Martin’s school team, I’m happy to say. They called a CSE meeting to switch Martin from a two-on-one aide to a one-on-one aide. Though the change felt like a step backward, Adrian and I didn’t object. There’s no point in denying reality. Then the behaviorist created a non-punitive behavior modification plan to help Martin stay away from Nicole. His aide, now responsible solely for Martin, started taking him into the hallway at the first sign of trouble, before his classmates could hear his inappropriate statements.

Slowly, far too slowly, the situation improved. Once Martin started to get control of his mouth in school, we went through a funny period: When my brother or I picked Martin up at the end of the day, he would smile and trot quickly to the car and, once inside with the doors closed, swear a blue streak. Random profanity. Utterly inappropriate comments not directed at any stimulus in that moment. Apparently Martin kept a steaming pot of threats and swear words inside himself throughout the school day and needed an outlet when he felt safe. So we let him pour them out. Day after day, Martin spent car rides between school and evening activities cursing like a sailor.

March 2019, Madison Square Garden. Martin “backstage,” waiting to confront the New Jersey Devils as they leave the ice.

That behavior, too, faded, down to an occasional “s—t” or “f—k,” sometimes under his breath, sometimes aimed directly at me to test the waters. He got control of himself around Nicole, mostly. The tics disappeared except for times of high stress.

In April came a major turning point. During the Easter/Passover break, Adrian and Martin took a weeklong trip to Spain. Just the two of them. I spent hours separating Martin’s supplements and other pills into baggies labeled “Monday wake-up,” “Monday breakfast,” “Monday afternoon,” and I created an abbreviated schedule for only the drops Martin needs most, mainly antimicrobials, so that Adrian would carry only one small container of bottles. Then I dropped them at JFK, and off they went to Madrid, Sevilla, La Alhambra, and Cordoba. I was terrified about how the trip would go. Martin was improved but still not himself. His anxiety was high, especially about food and food allergies, and for the first time they’d be without my services in finding and preparing meals. (Martin’s epi-pen went with them too, of course, in a sleek new carrying case.) So—fingers crossed.

April 2019. Martin in—Spain!

What happened? I don’t know, exactly. They had a great time, and Martin came back a different kid. His behavior improved, his anxiety dropped, and he became more focused. When he returned to school, he had his first week of five days without a behavioral infraction. (Again, his behavior-modification plan is non-punitive, so he’s not being punished for actions out of his control. His school team has been fantastic on that point.) The teacher and aide were so excited that on Friday they made a “Certificate of Achievement: Phenomenal Week” to send home. The next week, five more clean days. And the next week too. In all, Martin went three weeks and three days without a major infraction. When he finally did slip up, the behavior ended more quickly, and Martin responded well to correction.

Right now (school hasn’t ended for the summer yet, up here in the Northeast) Martin is having about one behavior infraction a week. In most cases, he makes some hurtful and provocative remark, like telling kids that he lives in a mansion and they live in a neighborhood with robbers. This is horrible, and for the record, we are privileged to occupy a lovely single-family home, but hardly a mansion, and there is no neighborhood beset by robbers in our safe little suburb. The comments seem to be a matter of impulse control: An awful statement comes to his mind, he blurts it out, and (immediately or later) he feels sorry. At bedtime he might say, “I’m a bad kid. No one can like me. Why can’t I stop saying these things?” or “Why am I obsessed with Nicole? Are kids scared of me?”

Also, he remains anxious. He’s anxious about whether he’s allowed to eat Frito-Lay products if they contain genetically modified ingredients. He’s anxious about how many kids can or cannot come to his birthday party. He’s anxious about school. And home. And the park. And his bed.

Yet he’s so much closer to baseline. I think we may even be beginning the slow process of fixing the damage—that is, the damage to his fledgling friendships. He made so much progress last year. It’s tough to keep friends when you’re telling them that you are rich and they are poor. This will take time.

About that trip to Spain: Adrian, whose country of origin is Hispanic, is something of an Iberophile. He has longed to share that with his son, especially to take him to La Alhambra. Their trip was a risk that delivered, in more ways than we could have anticipated.

Everything Is Wrong

Posted on by findingmykid
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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.

Cuddly Black-and-White Bears, or Blood Sucking Worms?

Posted on by findingmykid
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“PANDAS. I have a gut feeling. It sounds like PANDAS,” said my friend Stacey.

“But he’s never been a PANDAS kid,” I replied. “Plus, it didn’t come on that fast. The doctor thinks it’s parasite-related, thinks he picked up something new in Costa Rica. He’s always been susceptible to parasites.”

“Doctors can get stuck on one idea and want to make you fit that box. All I’m saying is to make sure you also look into PANDAS.”

“I hear you,” I said. “Can you get me the info on which tests to run for PANDAS? I’ll see if I can get them done before our appointment.”

This discussion, which could only have taken place between biomed parents, was about what’s been going on with Martin. Poor Martin is not in a good place. The troubles (the exciting new troubles, atop the quotidian troubles) started in Costa Rica, maybe halfway through July. I began to notice that Martin wanted to go to the bathroom all the time. Sometimes he would go to the bathroom, brush his teeth to leave, then need the bathroom again before we could get out the door. He started spending a long time on sitting on the toilet, too. Near the end of July he developed a tic: He thrusts one index finger simultaneously into each nostril—briefly, with no rooting around or picking, thank heavens—and then immediately puts his fingers into his mouth. The whole action is over within a couple seconds, but it’s noticeable, and recurring, and out of Martin’s control. Next came the eye rubbing. Since our return to the States, Martin has been rubbing his eyes compulsively. He asks, “Why is this happening? Why can’t I stop rubbing my eyes?” As we made our way into September, he started night-waking, and having trouble getting to sleep.

None of the symptoms dissipated as the new ones arose. As of today, Martin is sleeping poorly, rubbing his eyes till they look red and sore, patterning his index fingers into his nose and mouth constantly, and using the restroom multiple times per hour, sometimes staying in there 10 minutes or more.

Wait—did I mention touching his private parts? Now he’s doing that, too. If we gently remind him to watch his hands, he complains that it is hard.

I’ve already received several reports from school. Martin seems distracted (even more than usual, I assume). Martin walked into a wall. (Yes. That was one report.) Martin is signing out of the classroom to go to the bathroom several times an hour.

When the bathroom issues and first tic arose, in Costa Rica, I thought that oxalate sensitivity might be at play. I reduced oxalates in his diet, which was not easy, as he loves potatoes and sweet potatoes, and making a meal for the whole family (I’m vegan) usually means using some nuts, or legumes. A few weeks of reduced oxalates brought no change, unless you count a worsening of the symptoms.

Back in the States, I brought Martin to his pediatrician, to rule out a UTI. His urine showed no trace of problems. The pediatrician thought Martin might be constipated, which can cause frequent urination, so I worked prunes and pears into his daily diet. No change.

Martin is prone to parasites, so I gave him a course of Alinia, which has worked in the past. No change.

I called Martin’s primary doctor for autism issues. She suspected parasites also. Together, we decided to move Martin’s previously scheduled appointment from the end of October to this coming Monday.

Then I went out to dinner with Stacey, and we had the conversation with which I began this post. I agreed to get testing done for PANDAS, but to be honest, I was skeptical. Martin has never been a PANS or PANDAS kid. I can’t recall flares, or his behavior changing those few times when he’s been on antibiotics. Later Stacey texted me a link to basic information on PANDAS and wrote: “Seriously please read this because it does state urinary frequency as a sign of PANS and/or PANDAS. I would really look into this as a potential cause. I could be totally off base but I have just a gut feeling.” I opened the link, and one specific reported symptom of PANDAS struck me: poor handwriting.

Though I hadn’t thought much about it, or connected it to the urination and tics (probably because I’m bone-headed), I’ve noticed that Martin’s handwriting has been abysmal since he returned to school. Not just shaky or unplanned, as his handwriting usually is, but truly abysmal. Almost illegible.

PANDAS? Stacey’s gut feelings tend to be reliable.

Parasites? Martin’s doctor for autism issues knows him pretty well.

His mother’s opinion? Confused.

Hives

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Martin is allergic to horses. He didn’t always present as allergic to horses. When he was four and five years old, he did hippotherapy weekly, without problems. When he was eight years old, on a visit to Costa Rica, we went horseback riding on the beach: Martin, Adrian, my brother-in-law Pancho, and I. We rode for an hour. I was second in line; Martin, wearing shorts and a small t-shirt, was third. Every few minutes I turned around to glance at him, make sure he was still riding comfortably. I saw no issues. But when we arrived back at the stables, and I was able to see Martin up close, I could see that he was covered in a red rash. Rashed on his arms. Rashed on his legs and, I soon discovered, on his chest and belly. Most of all, rashed on his face, which was red and bumpy. “What’s wrong with me?” he exclaimed and burst out crying. I checked his breathing (it was okay), took him back to our rental house, and put him in the shower. With good scrubbing and an antihistamine, the rash dissipated.

After the Costa Rica experience, I asked Martin’s allergist—a mainstream doctor, not focused on ASD—to test Martin for a reaction to horses. The doctor agreed, though he had to order a special skin test. When it was finally available and administered, the test left no doubt: Martin’s forearm immediately swelled into a red bump. No more horses.

On that same Costa Rica trip (August 2016), we discovered Martin had become allergic to red meat.Sixteen months earlier, in February 2015, in South America, Martin was eating beef with roast potatoes when a red rash formed around his mouth.(That trip, however, he’d ridden horses with his cousins, no problem.) Still I didn’t realize that red meat, which he rarely ate, was the issue; of the Costa Rica trip, I wrote: “He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.” Subsequently I put the pieces together and stopped letting Martin eat beef—but it would be more time yet before I figured out that all red meats were problematic, not just beef. (That discovery, in a “bison incident,” is described here.)

This summer, in Costa Rica again, Martin’s day camp was having an activity in which the kids rode horses to a remote waterfall. I wondered: The allergy came on when Martin was already six (or seven? or eight?) years old. Does he still have it? These Johnny-come-lately allergies—do they stick around? I wanted Martin to be able to participate in the horseback-riding activity, and not to experience one more factor differentiating him from other kids.

So I acted recklessly. (Maybe?) I told the camp director that Martin is allergic to horses. I told her about Martin’s reaction two years earlier, also in Costa Rica. I said I was going to dress Martin in long sleeves, long pants, and high socks, and send him to camp. I asked her to let Martin give the activity a try and see what happened. I reminded her that Martin always carries antihistamine in his backpack, just in case.

Mid-morning, I received a message from the camp director. Martin had only been on the horse a few minutes when he got a terrible rash. She took him off the horse immediately and administered his antihistamine. The reaction was severe enough that she also took him directly to a shower to wash. Thankfully, he was better within a short time.

That’s that. Martin has become allergic to horses, possibly permanently, just as he has become allergic to cats and dogs and has become allergic to red meat.

I am, of course, back to pondering why Martin has developed allergies as he continues to heal. I still think the most likely explanation is that he had these allergies (with the possible exception of red meat, which may or may not be related to Lyme disease) all along, but previously his immune system was neither strong nor responsive enough to mount the proper response. Whereas allergies themselves represent flaws in immune function, perhaps one day Martin’s full recovery will mean the allergies dissipate along with the remaining vestiges of autism.

Today, let’s not dwell on the allergies, and what they might mean. Instead, let’s focus on this: According to the camp director in Costa Rica, Martin didn’t freak out, not even when he was covered in a rash and pulled away from the other kids. She said he was upset for a minute or two, then calmed down. Two weeks later, when the activity again was horseback riding, I offered Martin a choice: He could go to camp and play games or surf while the other kids rode (the director had offered this alternative), or he could take the day off and go to the beach with Uncle Eddie. Martin contemplated for a while, then chose to take the day off. It seemed like a reasonable choice, and it wasn’t a big deal.

Because now, not everything has to be a big deal.

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.

This Ain’t Nicaragua

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Last summer in Nicaragua, Martin flew. He soared. He matured. He grew. If I could have found a way to stay in Nicaragua without being separated from Adrian (whose job in New York sustains our travels and biomed), I would have done so.

Now cut off, for safety’s sake, from Nicaragua, I brought Martin to Costa Rica and assumed he would soar again.

But not so much.

He’s spending too much time in tiny-dictator mode: objecting to every idea, listening carefully for plans to complain about, agitating me because he can’t release his own emotions. He’s trying to prescribe who’s allowed to speak Spanish, or English, and when. And crazy opposite-talking, constantly. Yesterday, upon discovering that he was having coconut-banana tostada for breakfast instead of smoked salmon, he launched into a tirade directing me never to give him smoked salmon again.

For sure, it took several weeks for Martin to hit his stride last summer in Nicaragua. Nevertheless, by the end of July—I just ran through my contemporaneous posts—I was noticing improvement. Today is August 1, and Martin does not seem improved since we arrived here a month ago.

I don’t know why not. He’s constantly in saltwater, as he was last summer. He attends day camp. Although his diet isn’t great (corn, juices, way too much rice at camp, just like in Nicaragua), I stuff him with fresh local fruits and vegetables when possible. We’re doing herx water and dry brushing. (And what we are dealing with right now looks more like anxiety than the silliness I associate with detox.) We continue his Lyme- and parasite-fighting protocol, and the only pills I’ve run out of so far are HistDAO, i.e., enzymes for breaking down dietary histamines. (Had more sent to a friend, who will bring it next week when she arrives for a visit.)

Possibly some environmental factor is agitating him, like hidden mold in our rental house, or airborne allergens. The climate, flora, fauna here in Guanacaste resemble southwestern Nicaragua (fewer butterflies, though), but of course nothing is exact. We might have happened, last summer, upon a magic combination of factors, from jungle to supportive community, that cannot be replicated elsewhere. Of course, I can’t discount the simpler explanation that Martin’s current protocol is burdening his system, or that he’s just in a different place in his recovery process than a year ago. He’s always in a different place, right? This morning on Facebook, a friend with a severely affected child referred to “playing pin the tail on this donkey of a medical mystery.” That’s apt.

We keep plugging on.

Tomorrow Martin is signed up for his first-ever surf lesson.

Because why not?

IMG_1421

Martin versus the world. Or at least the ocean.

Yeast Defeated (?), Another Beast Rises (?)

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On the offhand chance you haven’t been tracking this yourself, I can tell you that these are the most recent mentions, on this blog, of yeast:

  • the 20 April 2018 post on detoxing, when I wrote that yeast was not causing Martin’s silliness;
  • the 22 February 2018 post on current issues, when I asked whether yeast might be implicated in skin rashes (apparently, it wasn’t); and
  • the 25 October 2017 post on meal preparations, when I noted that fruit no longer seems to cause yeast issues for Martin.

Years ago, I wrote about yeast constantly. I called it the “yeast beast” and lamented its repeated torment of Martin. Every time I thought we had yeast under control, I’d see a “fluffy” bowel movement, or the characteristic rash would emerge again.

Martin still takes Candex, which was the product that (I think) finally subdued his candida. I’m not ready to add yeast to the So Far Gone list, but for now, it’s gone enough.

Parasites think the disappearance of candida has given them an opening to fill.

Martin passes a lot through his skin. As of late, a lot of what passes through Martin’s skin looks like parasite activity is involved.

On the morning of June 10, just after we returned from a few days in California, Martin woke with a collection of strange bumps on his left forearm, many of which he’d already scratched raw. They looked like tiny insect bites, as if a single bug had crawled onto Martin, wandered about a small area eating its fill of flesh, and disappeared, or as if a bunch of bugs had assembled, used the arm as a buffet, then dispersed and gone home.

Martin’s arm hadn’t shown any evidence of this the night before. I tore apart his bed, searching for a spider nest or other den of revulsion. I found nothing.

By breakfast, when the fresh scratches had faded, the bumps started to look like a rash.

Martin said the bumps didn’t hurt, and didn’t itch (anymore?), but he wouldn’t let me touch them or examine them too closely. “It’s fine. I’m fine,” he said, tugging his arm away.

What the heck? Martin wakes with an odd collection of angry bumps, within a few square inches of skin, with no evident cause, which he then claims are not bothering him? In usual circumstances, I would attribute this to a mystery insect and move on. This year hasn’t been usual circumstances, though. At least not when it comes to parasite activity.

A week before the mystery bumps, I had posted about the condition of Martin’s arms and legs. With his skin such a mess, I was forced to consider whether parasites could be at work—again—already—just a few months after the anti-parasitical drug Alinia had reduced Martin’s itching and his inappropriate comments. I took Martin back to his New York biomed doctor, who agreed with my assessment. Parasites. Dad-blasted parasites. The doctor prescribed another round of Alinia. I avoid using any pharmaceuticals with Martin—we used nystatin once, for yeast, and it made Martin’s behavior bonkers—but the Alinia had worked so immediately, earlier this year, that I agreed to try the drug again. We did a first round while still in the States, and the second round here in Costa Rica.

If anything, Martin’s limbs are looking worse than in June. These are current photos of his legs:

  

Martin is picking at his skin compulsively. He’s also putting his fingers into his nose and mouth. Not picking his nose, thank goodness. More like rubbing and poking, as if his nose and mouth are irritated.

Do these symptoms mean Alinia isn’t doing the trick, this time? That whatever parasites are plaguing Martin are unaffected by Alinia? Or that parasites aren’t the problem? Or that parasites are the problem, and they’re trying to escape through Martin’s legs?

We spent years getting candida under control. I’m hoping parasites don’t mount that kind of protracted offensive. So many factors are at play. The New York doctor contends that we need stronger chelators, that parasites cannot be finished off while the body carries too great a heavy-metal load. (We know, based on hair analysis and other testing, that Martin has trouble excreting heavy metals. We use chelators including prescription DMSA, oral Liposomal EDTA, algas, and Bioray NDF Plus. I’ve never agreed to IV chelation because I consider it too harsh.) Heavy metals may be playing a role, but I also need to look at the ways I enable parasites to infiltrate Martin’s defenses. I try to be careful about what products we use for cleaning, and certainly Martin doesn’t have amalgam fillings, as I once did (and probably passed a significant portion of my toxicity to poor Martin). But Martin still eats fish, lots of fish (even if I am continually trying to keep him off raw fish). My friend Stacey re-washes vegetables labeled “triple-washed.” I don’t do that. I let Martin play in tide pools and swim just about anywhere, like at the river mouth with his day camp. And no amount of modeling, instructing, helping, begging, or pleading has yet got Martin to wash his hands properly. He prefers to make an impatient mess by rinsing his hands and shaking the water off.

In short, there are ways I can step up my parasite-prevention game, even as I keep on my parasite-elimination game through, for example, regular use of diatomaceous earth.

Two months later, Martin’s forearm still shows the remnants of the many bumps. Metaphorically, that means I’ve got to roll up my sleeves and get to work.