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Okay. Some Things Are Right

Posted on by findingmykid
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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.

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

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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.

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.

Now He’s Wondering

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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That’s Martin. I promise. It is.

This Didn’t Just Happen

Posted on by findingmykid
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Have you ever seen a sad viral post on social media about a special-needs child who throws a birthday party and no one shows up?

I’m sure you have. I’ve seen several. One post had a photo of a teenager at Chuck E. Cheese, sitting alone at a party table set for a dozen, a whole cake in front of her. Another post came with a happy ending: After a mom posted on-line that her son’s birthday party was happening with no attendees, the local fire department brought their truck right over to make the boy’s day special.

That happy ending notwithstanding, parties without any guests are terrible, both for the child’s self-esteem, and for how they reflect on community values.

What I am about to write is not intended to blame parents or caregivers for birthday-party failures. No parent should have to undertake the measures I am about to describe. These are actions that I choose because (1) Martin is fragile and socially awkward, and (2) many families either don’t understand or don’t care what it means when they RSVP “yes” to a special-needs child’s birthday.

To his ninth-birthday party, last year, Martin invited eight typically developing kids and a dozen with special needs. Of the eight typically developing kids, despite responding yes to the invitation and again to my follow-up email, four did not come. The mother of two of the no-shows said later that the family had “ended up going to visit an aunt and stayed longer than expected,” or some similar excuse. The mother of another, when I asked, texted me vaguely that her son had a stomachache. The parents of the remaining boy never said a word about his absence. Of the four typically developing kids who did attend, three were the children of family friends, and one was a boy who, despite being more or less typical, has some mild cognitive challenges and immaturity.

Of the dozen special-needs kids invited, all came, no follow-up necessary. When you are the parent of a special-needs child, you cherish every invitation, and you know what it means when your child is expecting a friend who fails to arrive.

Before we left the States, this year, we held Martin’s 10th-birthday party at our home. This was the first time the invitees to his party have been majority typically developing instead of majority special needs. In fact, Martin had such a good school year that he wanted to invite every kid in his class, 22 kids plus himself, including a lot of kids whose parents I really don’t know. He also wanted to invite a half dozen typically developing kids from his taekwondo dojang. In addition to that list, he wanted to invite the kids from his social-skills playgroups, and a few from his former school, which was self-contained special education.

I was relentless in seeking RSVP’s. Relentless. I began by sending every family an email to say that their child would be receiving an email by U.S. Post. The invitations were mailed six weeks before the party. After the nominal “RSVP by” date passed—by which time only special-needs parents had responded—I started the follow-up emails. (I remember the mother in one of the social-media posts referenced above saying something like, “No one responded to say they weren’t coming, so I figured they were.” That will not do.) For parents who were unsure, I followed up again. And again. Not in a way that would pressure anyone to attend: it was more like, “Trying to get an accurate count for food,” and that sort of thing. For parents who did not respond or who had no email, I found phone numbers. To contact parents with limited English (our area has a large Spanish-speaking population), I dispatched Adrian. If a child wanted to come but had no ride, we offered to pick him/her up.

By the week before the party, I felt I had a solid count of who would attend, or as solid as possible. Nevertheless, if asked by Martin, I avoided speaking in definite terms. Instead of, “Ben is coming,” I said, “Ben’s parents say they think he will probably be able to come.” I saw no point in building up Martin’s expectations if any chance existed that they would not be fulfilled.

The party was held the last day of school, after the kids’ early dismissal. We ended up with a no-holds-barred, over-the-top, supersized fiesta. There were two professional lifeguards, one stationed at each end of the swimming pool. Four dozen foam water cannons were lying around the pool deck. Our recently acquired 14-foot trampoline was open for business. The local Ralph’s Italian Ices franchise sent a festive umbrella/freezer cart, packed with flavors selected by Martin, and a uniformed employee to scoop unlimited servings. (Martin does not usually get to eat Ralph’s Italian Ices. This was a birthday treat he finagled, as follows: “Mommy, can we have Ralph’s Italian Ices at my birthday party? I already told everyone that we would.”) My brother Eddie manned the grill, flipping hamburgers, turkey burgers, and veggie burgers onto gluten-free buns. I hired teenage assistants, whose job was to run around cleaning up paper plates, serve food, and occupy any party-goers who looked forlorn or left out. The birthday cake was decadent and sprinkle-covered, prepared by a gluten-, nut-, and dairy-free bakery.

And 42 kids attended. Forty-two kids, all friends/classmates of Martin (and some siblings tagging along by permission). Seventeen of Martin’s 22 classmates came. Every kid on my final list actually showed up. Martin was in his glory. I had talked to him beforehand about retreating into the house for a short time if he felt overwhelmed during the party. Unnecessary. He spent the entire three hours outside in the yard, having fun. And then, when the father of two guests failed to pick them up as scheduled, Martin calmly invited them to play Xbox and spent an hour on the sofa.

Bringing the event together took hours upon hours of work, plus more funds than I ever intended to spend on a birthday party. In the end, Adrian and I got exactly the type of day we hoped to give Martin, to crown a school year of remarkable social advancement.

Although Martin’s Friday-afternoon birthday party was likely the highpoint of his weekend, it was not the highpoint of mine. Martin had two other birthday parties to attend that weekend. (Parents whose kids have summer birthdays tend to squeeze the parties into the last couple weeks of school.) Saturday afternoon, Adrian took Martin to a movie-theater party held by a friend from social-skills playgroup. Martin sat next to another boy from the same playgroup and watched Jurrasic World without incident. Sunday morning, I did not want to miss church, and Adrian had left town on a business trip, so 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.

ASD Recovery Recipe: Anything Taquitos

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It’s been a million years since my last recipe post. I vaguely remember that post being titled “Anything Pasta.” Its point was that, pretty much whatever is in my refrigerator, I can make (GFCF, lentil-based) pasta with those ingredients, and Martin eats. (Exception: mushrooms. The kid can sniff out a mushroom like a truffle hog.)

Today I reveal another secret, the taquito miracle. Martin can tolerate almond flour, and he does well with Siete brand almond-flour tortillas. Occasionally I make tacos at home, with spicy beans, tomato-walnut filling, spinach, tomatoes, onions, salsa. For me, I use corn hard shells. Adrian and Martin prefer gluten-free tortillas. One day I took leftover taco beans, added Miyoko’s cashew mozzarella, rolled them tightly into a Siete tortilla, and pan-fried the concoction, which sealed the tortilla shut and also made an externally crunchy finger food.

Martin acted like he’d found paradise. That first time, he ate four taquitos in a row.

I thought, why stop at leftover taco beans?

Since then I’ve realized I can roll a whole variety of ingredients into a taquito and watch Martin enjoy the creation. Last week, I made gallo pinto. Unfortunately, I rushed the job, and the beans didn’t end up as soft as Martin likes them. Although my brother Eddie, who is here with us in Costa Rica, enjoyed the meal, Martin refused to finish his portion.

Fast forward to the next day, lunchtime. I scooped leftover gallo pinto into a Siete tortilla, rolled, fried. Presto! Martin snarfed the first taquito and requested a second, no hint evident of the previous day’s fussiness. Other leftovers I’ve snuck into taquitos include rice pilaf, lentils, mixed vegetables. In a pinch I’ve combined organic pizza sauce and Miyoko’s mozzarella to blend two cuisines into the “pizza-quito,” a Martin favorite.

I also use the tortillas to make “quesadillas,” i.e., two tortillas like sandwich bread around filling, pan-fried into something resembling an edible frisbee. I make varieties of “breakfast quesadilla,” such as peanut butter and coconut, or cashew butter with banana. (Yes, I also make breakfast taquitos.) Martin currently dislikes leafy green vegetables. Usually I hide them in smoothies. One morning I happened upon another minor miracle. I finely chopped fresh spinach, then tucked it with Kite Hill almond cream cheese and Himalayan salt between two tortillas, and fried. If Martin was concerned about the spinach—which, by the way, was not hidden in the final product—he failed to mention the concern when he asked if he could eat the same quesadilla again later.

We’ve been in Costa Rica a couple weeks already, where (despite a remarkable variety of organic and GFCF products, compared to Nicaragua) items like Siete almond-flour tortillas aren’t so easy to find. The first week, Adrian was with us. He stepped onto the porch one afternoon to find Martin munching contentedly on a peanut-butter-and-strawberry taquito.

“Martin!” Adrian teased. “Did your mother travel to Central America with almond-flour tortillas in her luggage just so you can eat taquitos? Are you that spoiled?”

Yes, I did. Because yes, he is.

He Does Not Mean What He Says

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

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

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

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

After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her ‘racist’.” [Nicole is not the best friend mentioned above, and is Hispanic, not black.] . . . He added, ‘Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth’.”

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

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

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