When in a Rut, Turn to the Little Things

Posted on August 2, 2018 by findingmykid

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.

The Beginning

Posted on April 13, 2018 by findingmykid

This is the second post in response to last month’s reader comment asking, “I’m very curious to know where you started. I have gone back and searched the blog and couldn’t find a journey type of blog. Can you write about this when you can? When did you get diagnosed, what were your earliest challenges? Where did he stand verbally when he was diagnosed?”

I’ve described from time to time Martin’s condition before we started biomed. Here I will try to rope those descriptions into a single post, divided into two parts: (1) my memories of our realization that Martin had challenges; and (2) our initial neuropsychological evaluation, completed a month after we began biomed.

All of this will be written with a caveat. That is, from ages two through five, Martin had additional biological and behavioral manifestations of his immune disorder that, for privacy reasons, I do not discuss on Finding My Kid. Although this blog is written anonymously, nothing in this on-line age can ever be completely anonymous, and so I err in favor of protecting Martin’s dignity, and our family’s.

My Memories

Martin was born early summer 2008, in circumstances that I have described elsewhere and that I am certain contributed to the immune challenges he would later face. His first 18 months out of womb raised few eyebrows. After initial trouble latching and correction of a tongue-tie (many biomed parents see a correlation between tongue-tie and autism), Martin nursed well, for 22 months total. He started solid foods at six months.

Remarkably, at just 17 days, Martin could roll over, front-to-back. He did so in front of his pediatrician, who said, “You should videotape that.”

Martin also picked up words, so many words that to us, as first-time parents, he seemed to be “advanced”—whatever that means. He could give the nouns for objects to which we pointed. He could repeat lines of dialogue from movies and television shows. Wow! Adrian and I thought. We’d never heard, at that time, of echolalia.

Looking back with the hindsight of almost eight years in the world of autism, I recognize at least four red flags before Martin turned two. First, despite his ability to say words (lots of words), Martin never began to develop any functional language. He never combined words independently. Although he learned how to say and use “no!”, he failed to grasp the concept of “yes” or “I.” Second, Martin never took interest in other kids. He never reached the level of parallel play. Indeed, he never even seemed to notice when other kids were present, never walked up to or investigated them. Third, he could exhibit extreme hyperactivity, to the point of being unable to stop moving. He ran in circles for long periods of time. I could put him into his oval-shaped crib for a nap and return to find him running tiny laps around the edge of the mattress. Fourth, the sleeping troubles started early. We sleep-trained successfully at seven months old. Within six months, that had ended. Martin began taking longer and longer to fall asleep (60 minutes, 90 minutes, two hours) and waking frequently throughout the night.

Adrian and I finally began to recognize a potential problem around the time Martin turned two, in summer 2010. Samara, Martin’s nanny, invited some neighborhood kids over for cake to celebrate Martin’s birthday. When I observed the group, Martin stood out. He didn’t appear to be part of the group. The other toddlers came excitedly to the table for cake; Samara had to chase Martin repeatedly to get him to the table. Martin wasn’t able to blow out the two candles. He couldn’t make his lips into a pucker. He appeared to have trouble focusing on the task.

In general, Martin wasn’t listening. He couldn’t follow any direction, no matter how simple. If I held out a toy and said, “Here,” he walked away without taking the toy. He participated in Soccer Superstars. When the activity was “kick the little orange cone,” a dozen toddlers kicked little orange cones. Martin bolted to the next field and tipped over a goal. Because we were starting applications for selective private preschool—this really does seem an eternity ago—we enrolled Martin in the “Twos Club” at the Manhattan-based, for-profit “City Kids Club” (not the real name). When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. It didn’t work out that way. When the Twos Club let out, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. (Eventually, the City Kids Club kicked Martin out of the Twos Club, an experience I recount here, under the subheading “Whence My Anxiety?”)

I called an old friend who was working upstate in Early Intervention. We talked by phone several times over the summer and, in September 2010, she was able to make a day trip to the City. She arrived late morning, and by mid-afternoon, she said, “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.”

Martin’s autism was never entirely regressive; the autism was classic, insofar as there were skills he simply never acquired when he should have, like language or interest in peers. On the other hand, I recognized later that, during summer and autumn 2010, Martin was regressing. He lost the ability to point to distant objects. He lost eye contact, almost violently so: His determination to avoid locking his gaze on mine would lead him to twist his neck so far in his stroller that I feared he might injure himself. The hyperactivity began to alternate with extreme lethargy, when he would lie on his side, humming and pushing a toy car back and forth. He began drifting, walking the perimeter of our apartment’s large main room, dragging his fingertips on the wall to a sing-song sound. And his sleep, already poor, degenerated to almost non-existent. He could no longer fall asleep unless physically restrained. On the worst nights, Adrian and I had to work together, one of us securing Martin’s legs and ankles while the other lay half-upon Martin’s upper body and pinned his arms. Even then, Martin would clench and unclench his hands, roll his head, move however he could. When he finally slept, it would last no more than two hours or so. There were no more naps, ever.

Martin had the habit—I don’t remember if he did this always, or if it started around two years old—of going slack. When he grew frustrated, or didn’t want to do something, he let his body collapse onto the ground and stayed there, sometimes also screaming. Transitioning (moving from one activity to another) frustrated Martin, so he spent ample time, gelatinous, on the filthy subway floor and mats around the supermarket check-out.

He bumped into everything. When he ran, his head flew side-to-side and his limbs exploded in all directions. Low in muscle tone, he sat in the W position. He toe-walked. If he did take an interest in another child, he thrust his face uncomfortably close, as if trying to discover what it is that makes humanness.

During these days, these days I’ve just described, I saw my husband cry, the only time in our 18 years together.

Martin observing London Bridge, from the Tower of London vantage.

The Professional Analysis

We changed Martin’s diet in January 2011 and began biomedical interventions in February 2011. The next month, March 2011, we brought Martin to the developmental neuropsychiatry program at one of New York City’s leading hospitals, where he was evaluated over four separate visits. The report, presented to us in April 2011, concluded with a diagnosis “according to the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-IV-TR, 2000): Axis I: 299.00 Autistic Disorder.”

Here are selected findings (from the two examiners, as opposed to the parent interviews), as written in the report:

In the area of communication, Martin used a number of single words to label and some learned phrases, such as ‘I want . . . .’ He repeated ‘No’ frequently when he did not want to do something. Frequently his expressive language was not directed at anyone in particular. He pointed directly at objects but not to show interest in an object at a distance.
“In the area of reciprocal social interaction, Martin did not consistently use eye contact to engage others. . . . . He did not respond to the examiner when she attempted to call his name on four attempts but did so immediately when his mother called his name, though he did not look at her. He responded to the examiner’s pointing to the remote control bunny rabbit, not to her gaze and vocal prompt.
“In the area of restricted and repetitive behaviors, Martin gazed at the wheels of a truck repetitively and repeated ‘Hello’ over and over as he held a toy phone.
“Even though his mother remained with him, Martin had significant difficulty transitioning to the examiner’s office and into the structured testing environment. During testing, he was easily distracted by specific interests, specifically with letters and numbers, and this interfered with test administration at times.
“Compared to other children his age in the normative sample Martin’s overall performance on the [Mullen Scales of Early Learning, AGS Edition] was significantly delayed; he performed better than 2% of similarly aged children. His Early Learning Composite score is approximately two standard deviations below and suggests some delays in his cognitive development. Additionally, he demonstrated more unevenness in his cognitive skills than would be expected. His nonverbal, fine motor skills are a particular area of weakness and very low for his age, and his nonverbal, visual reception skills are also mildly delayed.
“Martin’s current repertoire of adaptive skills is somewhat more limited than would be expected for his age. His Adaptive Behavior Composite of 78 classifies his general adaptive functioning as moderately low; he scores better than 7% of other children his age. . . . [His mother] notes that he is making progress and attributes it to improvements in his sleep and the DAN protocol that was started 1½ months ago.”
Martin’s Early Intervention teacher “completed the Achenbach Caregiver-Teacher Report Form for Ages 1½-5 based on her view of his behavior over the past 2 months. . . . Her primary concerns relate to Martin’s inattention and his passive noncompliance throughout the day. . . . Martin is noted to sometimes use scripted language and to display delays in both his receptive and expressive language. He often does not answer when people talk to him and sometimes avoids looking others in the eye. He is sometimes disturbed by any change in routine. He is somewhat upset by new people or situations and may resist entering a new environment at school. He will occasionally place play-doh in his mouth.”

At the time we received the report, April 2011, I skimmed but did not read it thoroughly. The exercise would have been too disheartening. Instead I invested myself wholly in biomedical recovery, and trusted that we could make this better.

There you have our starting point.

Martin discovering his inner knight at the Tower of London.

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

Posted on April 11, 2018 by findingmykid

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

Long due note:

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

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

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

I responded:

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

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

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

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

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

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

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

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

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

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

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

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

Current Issues

Posted on February 22, 2018 by findingmykid

We are off to visit Martin’s biomed doctor. I made a list of issues to discuss, which includes the following:

skin rashes, in the form of blemishes that Martin scratches and picks at until they bleed;
itchy skin overall;
impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome (Martin does not have Tourette);
obsession with foods, allergies, which foods he can or cannot eat, which are treats, and so forth;
trying to understand tough situations by putting Minions into those situations, like, “Bob [a Minion] was on the playground and another kid said he couldn’t use the swings. Is that nice?”;
constantly apologizing, which has been an ongoing habit.

(There were other issues on the list, too personal for sharing on the blog.)

What are your guesses, readers? Parasites? Metals? Lyme activity because we started using cryptolepis to treat babesia? A different form of the yeast beast? Dry winter air? Noticing differences between himself and other kids?

I’ll fill you in after our appointment with the biomed doctor.

And before you worry that Martin’s recovery is off the rails, I will add the following:

First, Martin’s self-awareness is blossoming. Even his teachers have noticed. After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her “racist.” (In light of Black History Month and Martin’s classroom unit on civil rights, our family has been doing a lot of talking about racism and our country’s legacy of segregation. I think he was angry at Nicole, and “racist” was the first insult he happened upon.) 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.”

Second, this morning, by phone, Adrian said, “This past month or so, I’ve been having these awesome moments with him, where he’s just acting like a regular kid, and I can finally think, ‘This is it. This is the way it’s supposed to be. This is the reward’.”

Emerack Bitter

Posted on September 28, 2017 by findingmykid

Last week Martin opened a restaurant.

He woke one morning and said that he was launching a restaurant and that in fact the grand opening would be that very evening, in his bedroom. I thought he might forget about this plan over the course of the day, but nope. After school and homework and taekwondo practice, and without even asking for his iPad (his usual request when the obligations are done), Martin scampered to his bedroom and shut the door. Half an hour later, when Adrian arrived from work, Martin reappeared in the kitchen and asked whether we’d like to attend the big event.

“Welcome to Emerack Bitter!” he said as we entered his room. Indeed, a handmade paper sign, propped against the hallway molding just outside the door, read “Emerack Bitter.” What a name!, I thought. Sounds like Brooklyn’s trendy new bourbon bar. “Panda is the host,” Martin continued, gesturing toward a stuffed panda bear perched on a cabinet. “Would you like to request a table? And here’s Bob, the owner. Maybe shake his hand and congratulate him?”

Adrian and I played along as Martin showed us the great turnout. Emerack Bitter’s eight tables were all occupied, with stuffed animals seated in groups, including its largest table, where six animals were eating. Opening night had entertainment, too: A mechanical bear in an Elvis costume, with a guitar. Beside Elvis Bear was a handmade sign instructing guests to “follow him on-line at http://www.ElvisBear.com.”

I ordered a smoothie, to Martin’s delight. He asked which fruits I would like, then pretended to load them into a blender, pretended to place the top on the blender, pretended to pulse the blender button, pretended to pour the mixture into a cup, pretended to add a straw, and finally pretended to hand me my smoothie before taking Adrian’s order.

If perhaps I am harping too much on the pretending aspect, it’s because Martin has never really engaged in this type of pretend play, never invited others to join him in an imaginary setting. I realized quickly that Martin was combining experiences he’d had in Nicaragua. We attended the grand opening of a friend’s restaurant, where we complimented the owner on the full house and enjoyed live entertainment, a signer/guitarist with (you guessed it?) a sign telling us to follow him on-line. Separately, every afternoon we purchased smoothies at a roadside stand, where Martin watched the proprietor write orders and load fruits into a blender.

Seven years ago, after we realized something was different about Martin, I filled out various questionnaires designed to help determine whether he was on the autism spectrum. Each one asked whether Martin engaged in pretend play or acted out imaginary scenarios. “Never,” I circled, time and again.

I understand that a child recovering from autism may “go back” and meet, on a delayed basis, typical developmental milestones that he missed along the way. I was excited to tell Martin’s psychologist about Emerack Bitter. She seemed pleased, too—although when I said, “I know that pretending like that is characteristic of a kindergartner, not a nine-year-old” she took some wind from my sails by replying, “More like a three-year-old.” She added that, in her office, Martin had recently created a scene of soldiers, including one lying belly-down and aiming a gun. Martin had said the gun was actually a camera, and that the soldier was using it to take a picture of another soldier he placed on a castle balcony. (Quite an assemblage of toys in the psychologist’s office!) This was new, the psychologist said, this ability to see from the soldier’s perspective and understand where his camera would be aimed.

Last weekend, at a softball game, I had a beautiful hit that cleared the centerfielder and sent her chasing the ball deep into the outfield. Unfortunately, as I rounded toward second, I missed touching first base. I had to go back to touch first base and continue from there. The fiasco converted my probable homerun into a triple instead. But in the end, it didn’t make any difference that I had to return to touch first base. The very next batter hit a solid line drive, and I crossed home plate, just a little later than I would have otherwise. No one cared. A run is a run.

After the grand opening of Martin’s restaurant (upon additional consideration?), he announced that the owners actually were Don Emerack and Dawn Bitter, and that they thought it was so funny that their first names were almost homonyms that they decided to combine their last names for the restaurant.

I think it’s a pretty cool name. Look for the next Emerack Bitter near you.

Daily Meatballs

Posted on December 21, 2016 by findingmykid

Most school days, I pack meatballs for Martin’s lunch. Specifically, spicy buffalo meatballs, which I make by combining bison chorizo with minced vegetables. I send spicy buffalo meatballs for four reasons. First, Martin finishes them. I don’t have to worry about lunch coming home half-uneaten. Second, they are easy, insofar as one package bison chorizo, plus vegetables, makes a three-day supply, which I prepare in advance, leaving only the cooking for the morning before school. Third, they keep well and are not a food that becomes soggy or unattractive in the hours before lunch break. Fourth, they fit well within the cycle of Martin’s diet. He eats meat no more than once per day; tucking the meat meal into the school day frees me to prepare a vegan dinner for the whole family.

Yesterday evening, I made sweet-potato-and-lentil shepherd’s pie, which was a triumph, unlike last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. The triumph went quickly:

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In sum: spicy buffalo meatballs. Lots of spicy buffalo meatballs.

Last night at dinner—the aforementioned shepherd’s pie—Martin said, “Mommy, would you stop sending meatballs to school all the time? Sometimes I want something different.”

Readers, what a moment! How much do I love that my son has the functional language to express his preferences and advocate for himself? How much do I love that he wants variation? Immediately I recalled a news piece I once about a young adult on the spectrum, living independently, who was anxious to date but impeded by, for example, the fact that he refused to eat anything but canned tuna for dinner.

“What would you like instead of meatballs?” I asked Martin.

“Rice,” he answered. Of course. I limit rice in Martin’s diet, and he schemes for any opportunity to get those little grains into his mouth.

I said, “Your point is well-taken. I’ll see what I can do.”

This morning we were late for the school bus. We were late because I needed some extra time to make Martin’s lunch:

Addendum on the topic of last week’s disastrous attempt at vegetable-and-white-potato shepherd’s pie. That recipe didn’t work at all, turned out bland, and my last-minute efforts were insufficient to inject any pizzazz. Plus, the recipe made too little potato topping and too much inside filling. I was, however, able to salvage a small victory. I removed the extra filling and processed it into a paste. The next morning, I spiced the vegetable paste, combined it with an egg, and fried the batter into savory pancakes. Martin loved the makeshift breakfast.

The Never-Ending Story

Posted on July 26, 2016 by findingmykid

Even now, even with all the progress we’ve made, even with Martin’s upcoming transfer to general education, even with me being able to work part-time outside the home, even when friends and family pin accolades on Martin and acclaim how far he’s come, even with the confidence that he will be able to love independently—

Even now, there are times when I fear my son’s illness still could get the better of me.

For more than a month, Martin has been sleeping poorly. Not as poorly as in the bad old days, when he needed physical restraint to fall asleep and rarely managed more than a few hours consecutively. But his silliness and hyperactivity (reactions to his Lyme protocol?) often steal two hours or more before he can settle, and his anxiety (protocol, combined with life changes like a new school?) disturbs his sleep. The day after such nights, he’s tired, which leads to more silliness and hyperactivity and anxiety, which lead to more sleepless bedtimes, and so goes the cycle.

It’s 5:04 a.m. I’ve been awake since 3:22 a.m., and so has Martin. Initially I hoped he would go to the bathroom and back to bed. Instead, he giggled and complained and snuck into my and Adrian’s room. At one point I found him curled up on the throw rug next to our bed; when confronted, he declared himself unable to rest anywhere else. Fifteen minutes ago, I gave him activated charcoal, to absorb whatever might be causing this vigil. Five minutes ago, I shut the master bedroom door (I’ve moved to the kitchen, to write) so that maybe Adrian can be the family member who gets to sleep till dawn.

Today, beginning in half an hour, I need to make breakfast and Martin’s lunch and handle morning supplements; drive Martin to a doctor appointment for his medical exemption for vaccines; drop him at school; edit a complaint and a legal memo; coordinate drafts of joint prosecution agreements; lead a call with several attorneys; schedule three separate home repairs; continue working through my checklist of activities to prepare Martin for his new school; repair Martin’s trombone before his music instructor arrives; conjure a grain-free organic dinner; help Martin with homework and exercises; repeat the increasingly futile bedtime routine; and use the after-bedtime slot to make Adrian’s lunch and Martin’s “goldfish” snacks.

Though I no longer handle sleeplessness well, I will do all this on less than five hours’ sleep, and then I will hope for a better night, because tomorrow I need to take Martin to Chicago for an optometrist appointment.

These are the times when I trip into a pile of doubt and fear, and when I wonder about just giving up. These are the times when I have to remind myself how much better I have life than other moms with ASD kids. These are the times when I dig deep for every morsel of scrappy resourcefulness I have.

It’s past dawn now, and Martin is in the family room, insisting that daylight means he can get up and watch television.

I’m going to go take care of the trombone. I’m from rural Upstate, so by my reckoning duct tape and ingenuity ought to do the trick.

Del Sur V: Manifesto

Posted on June 21, 2016 by findingmykid

“Do you know?—maybe it’s possible that he never had autism?”

These words were spoken innocently, by a sympathetic party, and (I suspect) without forethought. It was late evening in South America. Martin was asleep. My mother-in-law and I sat in her kitchen, chatting, I with a glass of white wine, she with her pisco sour. We were discussing Martin and his progress; I mentioned that his official diagnosis had changed from ASD to ADHD with social/pragmatic language delay. My mother-in-law responded, “Do you know?—maybe it’s possible that he never had autism?”

My mother-in-law supports everything we do for Martin, and does her best to accommodate; we arrived from New York to find her fridge stocked with organic produce (still hard to procure in her area) and a cow knuckle and vegetables simmering on her stove, for Martin’s broth. That being said, I’m not sure she fully understands biomed, or our start point and desired endpoint. This is no criticism of my mother-in-law. I’m not convinced that anyone outside the thick of recovering a child understands autism or what healing requires. I’m not even convinced that I understand autism or what healing requires; I’m just a few paces farther down that road than others are.

Still, when my mother-in-law offhandedly suggested that maybe Martin never had autism, I bristled. I bristled because I think I will hear that suggestion a lot, as Martin continues to become more typical. Already I hear hints. A friend who has a mostly nonverbal seven-year-old and does not do biomed remarked recently about how “maturity” is resolving a lot of Martin’s issues. The friend meant no harm; in her mind, biomed doesn’t work, so she needs something else to explain Martin’s emergence from autism. (I didn’t pursue the issue further. I’m cautious, with other autism parents. We’re all doing what we think we can.) And remember the neurodevelopmental psychiatrist’s words? According to her, Martin developed functional language because he was “not destined to be a child with receptive or expressive language problems.” It’s not biomedical interventions. It’s destiny!

I know, from other blogs and on-line communities, that parents who manage to recover their kids from autism face skepticism that their children ever had autism. You may ask, why should they care? The opinion of naysayers doesn’t affect their children’s recovery. Why should I care if another autism parent wants to chalk Martin’s ongoing recovery up to “maturity,” or a doctor implicates destiny over hard work?

Well, I care, we care, everyone should care, because denying biomed has far greater implications than just adhering to ingrained misconceptions about autism.

It is possible to recover from autism. Not to learn to live with autism’s symptoms, which is what behavioral therapies teach, but to eradicate autism by treating the disorder’s underlying medical causes. I know this to be true, because my son is recovering from autism. I’m not deluded. I have the blood work and urinalysis evincing his medical issues. I have the series of neurodevelopmental psychiatric reports describing his detachment, his lack of language, his emotional instability. I witnessed too well his lethargy and physical discomfort. I endured his sleeplessness. I have watched, over five years, as his medical issues alleviated and the autism symptoms improved in tandem.

Every case of autism is different. Yet there are commonalities. The presence of autism points to an immune disorder rooted in the gut, where 70% of the immune system resides. A healthy gut biome has plenty of good bacteria to keep germs and infections at bay. When something depletes the good bacteria—say, antibiotics, or glyphosate—the bad guys start to party. Any further insult, like insufficient vaccine absorption or exposure to environmental toxins, can cause the whole immune system to jump its rails. When you’ve got no properly functioning immune system, you can find yourself with a host of secondary problems, like neuroinflammation, excess propionic acid, a struggling thyroid, glutathione depletion and methylation troubles, opportunistic infections, an inability to secrete heavy metals. And then? Neuron misfires. The endgame that manifests in autism.

Autism rates are on the rise. Stunningly. Think of those graphs that represent worldwide human population: Autism’s growth is similarly exponential, even according to conservative CDC figures. The epidemic is not the result of greater awareness, or expanded diagnoses; if it were, we would expect to see most cases clustered at the mild, almost debatable, end of the spectrum, where the merely “quirky” kids reside. Instead, new autism diagnoses litter the entire spectrum. Non-verbal, acutely affected autism is on the rise just like Asperger’s. Those who deny the rising autism rates are the willful ignoramuses and the irrational optimists. I am out of patience for either.

We don’t know, yet, what “causes” autism, though every day we learn more about factors that may contribute to the development of autism. I mentioned a few above: overuse of antibiotics, unsafe vaccinations, pesticides. Activists speculate about the role of pollution, about electromagnetic fields, about C-section births (or not) and the newborn’s chance to benefit from the vaginal biome. Genetics also play a role, such as the MTHFR mutation or UBE3A mutation.

(Note this: Accepting that genetics play a role in development of autism is not saying that we “can’t do anything about” the autism epidemic. The genetic predisposition to autism has probably been around many generations; only now do new environmental triggers spur the subsequent development of the disorder. Plus, more and more we have to speak not of genetics proper, but of epigenetics, mutations with the capacity to arise or dissipate between generations, or even within a single generation.)

Which brings me to many people’s resistance to accepting the notion of biomed. If we accept that we can reverse autism by resolving the factors that caused it in the first instance—then we admit that something is causing autism. Based on the exploding autism numbers, whatever is causing autism is getting worse. In an over-hygienic world devoted to unlimited consumption, exploitation of animals and the environment, a pill for every ailment, and the temple of convenience, we are doing something wrong. Disastrously wrong. In that regard, progress has stopped. Unless we change course, each successive generation will pay a higher bill for our abandonment of what is natural.

Unfortunately, almost no one seems to want to change course. So people deny that autism is on the rise, or that autism has causes, or that autism can be treated.

This is why I bristle to hear that maybe my son never had autism, or that he’s moving off the autism spectrum because of something other than biomed. It is also why I do not support the “neurodiversity” movement. Don’t get me wrong: I support the goal of inclusion and accommodation for persons living with autism. Did someone insult or exclude your family member with autism? Call me. I will gladly rush over and go Brooklyn on the jerk. But do not hand me acceptance of autism itself as a policy for dealing with skyrocketing autism rates. Do not tell me that autism is “just how some people are” and should not be addressed, because I will respond that schizophrenia and depression—other disorders with medical underpinnings—are also “just how some people are,” and give lie to how misguided neurodiversity is. People with autism should be accepted. Autism itself can, and should, be fought.

We can learn to live with just about anything. City dwellers learn to live with constant light and noise pollution. Our world may be on the verge of learning to live with catastrophic climate change. This ability to adapt does not mean that we should fail to recognize and correct our own mistakes.

My son had autism. My son still has ADHD. One day my son will be neurotypical. Treating his disorder biomedically has made this progress possible.

Full stop.

Past Tense

Posted on March 14, 2016 by findingmykid

Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”

Attention-Deficit Hyperactivity Disorder (ADHD)

Posted on March 9, 2016 by findingmykid

Because we are thinking about changing Martin’s school placement, Adrian and I decided to order a new neuropsychological educational assessment (a “neuropsych”). Martin also had a neuropsych three years ago, before he entered kindergarten, and last year. Those first two neuropsychs were completed by Dr. DS, a practitioner in Manhattan. This time we switched to Dr. PS, a practitioner in a suburb near ours, who knows our local schools and who had never before met Martin. Dr. DS and Dr. PS are mainstream neurodevelopmental psychiatrists, not biomed practitioners. Before Dr. PS started her testing, I enumerated Martin’s issues at this time: paying attention, sitting still, emotional regulation. I did not say “autism,” though she certainly must have seen that word on the previous neuropsychs and the school records I provided.

We had our parent meeting with Dr. PS last week, after she’d had three lengthy testing sessions with Martin. She told us that Martin’s primary trouble lies in executive functioning. She diagnosed him with ADHD, compounded by social/pragmatic language delays.

She didn’t mention “autism.”

Adrian asked, “You’re saying he has attention deficit and hyperactivity?”

Dr. PS answered, “Really, hyperactivity is a minor part. The primary issue is attention deficit, this inability to focus. That stems from the executive functioning and affects his performance in many areas, including school.”

Adrian is Adrian. He likes concrete, definitive responses. He asked, immediately, “Um, why don’t you think Martin has autism?”—not the question I would have posed. I like to leave well enough alone.

Dr. PS said that different practitioners come at executive functioning in different ways. Martin, she said, presents with “a little bit of this, and a little bit of that,” such that, perhaps, a doctor focused on autism might find a mild spectrum disorder. In Dr. PS’s opinion, however, Martin “does not meet the diagnostic criteria for autism spectrum disorder.” He presents much more strongly as a child with attention deficits. True, he retains difficulties with social/pragmatic language, but he is eager to socialize and keenly aware of others. No, she concluded, he doesn’t have autism.

“So,” I said to Adrian as we climbed into bed that night, “we don’t have a son with autism anymore.”

Adrian paused. Then he replied, “I guess we’ve known that for a while.”

I guess we have.

Martin can express himself, now. Martin doesn’t really have repetitive behaviors, anymore. Martin’s perseveration, which once was literal inability to stop speaking, has faded to a penchant for prattling about obscure topics, like marching bands and features of my car’s dashboard. Martin knows exactly what other kids are up to. He won’t let me affix a sport strap to his glasses anymore, because “Zach and John don’t have straps on their glasses.” Martin is awkward, socially, and his attention span has the half-life of hydrogen-7. But “autism”? These days, that seems too harsh.

On the other hand, it feels strange—to say I don’t have a son with autism. We still have a lot of work to do with Martin’s executive functioning, and the spectrum has been a driving component of our life, even of my own identity. We socialize with other autism families. We swap articles about autism. I even pre-board airplanes, on the basis that “my son has autism.” (The pre-boarding will have to stop. I will let airline attendants draw their own inferences, but I won’t lie.) Autism, autism, autism. What do I do now? Find ADHD friends?

Adrian and I have never been public about Martin’s diagnosis. Indeed, we’ve gone to lengths to hide his autism. In part, that’s because “autism” is a scary word. ADHD or ADD, not so scary. People seem to love to self-diagnosis with ADD. Maybe now we can go public with that moniker.

Almost six years ago—the summer that Martin turned two—was when Adrian and I started to realize that Martin had “issues.” Other kids blew out the candles on their birthday cakes. Martin stared into the abyss over his own cake. (We later discovered he lacked the ability to pucker, or to blow.) In the toddler soccer program, when the coach said, “Run and kick a cone,” nine kids ran and kicked a cone. Martin wandered to the next field and tipped over the goal.

By that fall, we were sufficiently concerned to ask a high-school friend of mine, an EI provider, to come take a look at Martin. She did, and she knew immediately that he had autism. The first psychologist, sent by New York City only a couple weeks after my friend saw Martin, said, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.” But though Adrian and I didn’t realize it, Martin was backsliding. He had already lost eye contact and was becoming less responsive every day. By the time the Big Imposing Hospital’s neurodevelopmental team got hold of Martin, several months later, there was no mention of “high-functioning” or “Asperger’s.” They diagnosed Martin with moderate autism and threw in the kitchen sink of co-conditions: delays in every type of communication, low muscle tone and lack of proprioceptive awareness, sleep disorder, possible cognitive impairment, and on, and on, and on.

Let’s call that the low point.

Fortunately, we had already started biomed and the tedious brick-by-brick struggle to free our son from autism.

When he was three, Martin’s special-needs preschool removed him from a self-contained 12-1-1 classroom (12 special-ed students, one teacher, one aide) based on his need for more supervision, and his inability to keep up with the other developmentally delayed three-year-olds. The school placed him instead in an 8-1-2 classroom, in which two other students had 1-on-1 aides (in total, eight special-ed students, one teacher, two classroom aides, and two dedicated aides). Martin was left in that classroom for two years.

When it came time to find a kindergarten—we lived in New York City, where kids don’t just go to the local school, as they might elsewhere—we had Martin’s first neuropsych done. Dr. DS, the Manhattan neurodevelopmental psychologist, confirmed the autism diagnosis as “not a close call.” He told us that our desired elementary school, which has 12-student special-ed classrooms, would not provide enough support for Martin, and would be likely too advanced, academically. He said we were “really looking more at a need for 1-on-1 support” or a six-student ABA classroom.

Forget that, Adrian and I decided. When the desired school, with the 12-student classrooms, accepted Martin, we sent him there. And he excelled.

Two years later, before second grade, it was time for another neuropsych. To get a reasonably comparative assessment, we brought Martin back to Dr. DS.

Dr. DS admitted that he had been mistaken to think Martin wouldn’t make it at our chosen school. In fact, Dr. DS was not so sure Martin still needed all the support the school offered. “I’ve seen some remarkable progress,” Dr. DS said when he presented us with Martin’s report. Martin had moved from the third percentile to the 83rd percentile in receptive language, for example, and though the autism was still prevalent, he had made tremendous gains in other areas, too. What were we doing?

I told Dr. DS about our biomed protocol and nontraditional therapies, like HANDLE and Anat Baniel Method. He listened. At least he appeared to listen. When I finished, Adrian asked Dr. DS what our next steps should be, and Dr. DS said, “Medicate Martin. Now is a good time to start experimenting with medications, so that by the time he reaches third grade, when the curriculum becomes more advanced, you will already know the best combination and dosage of medications, whether it’s depressants, stimulants, or something else.”

Thank you, Dr. DS!

Another year passed, and this time we brought Martin to suburban Dr. PS, who opined that autism spectrum disorder is no longer the correct diagnosis for Martin. She said that her testing revealed an upward trajectory from Dr. DS’s reports. While Martin once had significant delays in all four areas of language, Dr. PS said, he now exhibited delay only in pragmatic/social language. “So looking at his history,” she said, “we can see that Martin was not destined to be a child with receptive or expressive language problems, as those have faded away.”

Destiny? I asked myself. Destiny didn’t resolve Martin’s receptive and expressive language delays. Biomed did.

“What should we be thinking about for next year?” Adrian asked.

Three components, said Dr. PS. First, the choice of school setting. Second, additional therapies and resources. And third, medication. It’s time to start experimenting to find the best medication for Martin’s ADHD.

I’m tempted to write, Thank you, Dr. PS! There’s an addendum, however. I told Dr. PS that we are “hesitant” to medicate Martin because doing so would interfere with our biomed protocol. The progress we’ve made, I explained, has resulted from a restricted diet, supplementation, and constant reevaluation of Martin’s health needs. Dr. PS—remember, she’s a mainstream neurodevelopmental psychiatrist—asked pertinent questions, like what kind of doctor we see and whether the protocol is test-based. (There are charlatans in the autism-recovery universe. I know that.) After I provided sufficient reassurance on those points, Dr. PS said we are probably right not to medicate at this time. If what we are doing biomedically is working, she said, then we should exhaust that route. Experimenting with medication does not have a time limit, and it is okay to start later.

So, actually, really, thank you, Dr. PS. Thank you for listening and reconsidering.

And, for my readers, especially my long-term readers, here’s a special tidbit: Do you remember my lengthy post about Mr. and Mrs. Twice-Exceptional, the Quirky Genius School, and the movie The Imitation Game? You might want to revisit that one.

As she was reviewing Martin’s test scores with us, Dr. PS pointed out a wide discrepancy in the different fields. In many academic areas, including reasoning and some language-based tasks, Martin’s scores were at the top of the bell curve, well above the average range. He uses his formidable intellect and those stand-out skills, Dr. PS said, to compensate for his still subpar executive functioning.

“You see,” Dr. PS told us, “your son is what we refer to as ‘twice-exceptional’.”

Finding My Kid

A parent's real-time blog of autism recovery. Start-point is a diagnosis of ASD. End-point is unknown.

Category Archives: Motivation