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.

Del Sur IV: That Doesn’t Sound So Bad

Posted on June 14, 2016 by findingmykid

Adrian’s two sisters, each a mother herself, don’t know about Martin’s autism, because Adrian refuses to tell them. Adrian’s official position is that, given the discrimination that still exists against disabilities and difference in his country of origin (where my in-laws reside), he would rather not see Martin “branded.” (Adrian’s parents and brother, Pancho, know the diagnosis. Adrian is closer to them.) I don’t begrudge Adrian’s choice. Even here in the States, we haven’t been public about Martin’s autism, or former autism.

On the other hand, the ignorance of my sisters-in-law leaves me in an awkward spot when Martin and I visit South America. For years I’ve avoided spending too much time for them, or covered when it came to Martin’s behavior, like I covered on our first day this visit. How many times can I say Martin is tired, jet-lagged, on a different schedule, shy, not feeling his best? Try me.

I decided this year I might be able to do something different. I approached Adrian with the idea of telling one sister—Claudia, who lives in the capital city we were visiting, and whom Adrian likes better—about Martin’s new diagnosis, ADHD. “Autism” strikes fear. “ADHD,” on the other hand, makes people wonder if your kid is taking the same drugs as their kids. Adrian agreed. ADHD doesn’t sound scary like autism sounds scary. We decided that I would share with Claudia “our challenges with ADHD.”

I didn’t really find a good opportunity to talk until our last evening in town, when Martin stayed with my mother-in-law while I went out to dinner with Pancho and Claudia. Then I fumbled, trying to come up with a way to initiate the conversation. An hour into dinner, Claudia said we should come down in July to go skiing during her children’s winter break.

“I wish we could! But Martin goes to school during the summer. Next year maybe we could come—he might change to a new school and have summers off.”

Awkward. Still, my comment moved the conversation in the desired direction. Claudia asked, “Martin is changing to a new school?”

“Yes,” I replied. “Right now he goes to a special school for kids with ADHD. But his attention has been getting better. We are thinking he can go to a regular school, with some extra help.”

If this fazed Claudia, she gave no hint. She said, “And then he would have the summer off? Do you think you could come here for the whole summer? We could do so much skiing!”

“I don’t know about the whole summer. We could probably come for a while,” I said. “It all depends on whether he gets to switch schools. We still have work to do on the attention span and all the issues that have to do with ADHD. We’re not sure he’s totally ready to leave his special school.”

Across from me, Pancho was nodding. He has known about Martin’s issues for years and could see what I was trying to do.

Claudia said, “This will be great. I’ll send you the schedule for my kids’ school vacation, so you’ll know when to come.”

Last try. I said, “I will have to let you know what happens. ADHD is very hard to accommodate properly in school. You can see Martin’s poor attention span.”

Claudia said, “I’ve heard it’s very common in America to change schools. Not here. My children will go to the same school until university, just like we did.”

There went my big talk with Claudia. At least, somewhere in her head is the notion that Martin has special challenges. I suppose that’s enough for now.

Final note: In the first paragraph of this post, I mentioned “the discrimination that still exists against disabilities and difference in [Adrian’s] county of origin.” I don’t know whether the culture of Adrian’s country of origin engenders unusual bias against disability. On my visits there, some 10 times and counting, I haven’t witnessed autism discrimination. But when it comes to Adrian’s own country of origin, I will let his opinion carry the day.

Del Sur, Interrumpido: Siempre Alguien Hace Leña del Árbol Caido

Posted on May 31, 2016 by findingmykid

Monday, last week, was abysmal. Something—a supplement, or an allergen, or another environmental factor, or . . . still trying to figure out—was causing Martin to be anxious and contrarian. He argued every statement, contradicted every request, had trouble holding himself together. Mondays I pick him up from school, we go to the natural-foods market, and I take him to personal training. Last Monday we had to break that routine and replace the natural-foods market with visiting the optician to fit Martin’s new glasses. That was bad enough. Then we spent too long at the optician and ended up late for personal training. Oh. My. Huge. Anxiety.

When we pulled into the gym parking lot, Martin was perseverating on our tardiness, demanding to go home, and trying not to cry. I knew I had work to do before we could enter the gym.

Monday also happened to be windy. Very windy. As I began to open my door, a gust blew it into the Volkswagen Beetle next to me. Just a tap—my door’s plastic rim hit the Beetle’s side panel. I withdrew the door and checked the other car for damage. The Beetle had enough nicks and scrapes that I needed a second to confirm where my door made contact. At that spot, I saw no damage.

Just my luck: A woman was sitting in the Beetle’s driver seat, texting or something. She thrust her head through her open sunroof and, glaring at me, contorted her face into a grimace.

I said, “Sorry The wind got hold of my door. Thank goodness it didn’t leave a mark.”

My mind, at that moment, was occupied about 2% with my car door, and about 98% with Martin’s potential meltdown, so I started to exit in order to deal with Martin.

The other woman’s mind, by contrast, seemed 100% occupied by the fact that my door had tapped her Volkswagen. She scowled, and yelled, “You’ve got to be more careful!”

“Yeah, sorry,” I repeated as I walked around my car to retrieve Martin. I helped him down from his seat and walked him to the back of my SUV, where I had enough space to kneel and take his hands in mine while reassuring him. This position, me kneeling in front of Martin, holding his hands and available for a hug if necessary, is our best defense to a meltdown. Martin was alternating among might-cry face, a few tears, and deep belly breaths to gather his composure. After 15 or 20 seconds, we were starting to get the potential meltdown under control. I was able to use one hand to wipe tears from Martin’s quivering cheek.

And then—VW Beetle chick decided she had found an appropriate time to address the non-existent injury to her jalopy. (Pardon my attitude. I believe it justifiable.) She exited the driver seat, walked around to the side panel my door had tapped, which was also close to me and Martin, and commenced a conspicuous inspection. The inspection involved leaning very close to her car, flashing me an angry expression, slurping diet soda, waiting for a response from me, and upon receiving no such response, repeating the entire process. At any other time, the situation would have been laughable. At this moment, as I sit here writing, the situation is laughable. Last Monday, on the other hand, in the midst of Martin’s anxiety, I felt my blood begin to rise. Seriously, lady? Seriously? I am—literally—on my knees in a gym parking lot, imploring my angst-ridden seven-year-old to hold his s*&t together, and you’ve found the perfect time to confront me for accidentally bumping the side panel of your car? I perceived a change inside me. Country-raised, uniformly polite suburban mom spirit was leaving my body. In her stead came chip-on-the-shoulder city girl. I started to stand. I was about to get up in this woman’s face, and not a little bit. I was about to be inches from VW chick’s nose.

And then—Martin’s chest heaved, and tears came. Instantly, I knew that Martin knew that I was on the verge of getting into it with another adult. I returned to my knees, reclaimed his trembling hands, and told him softly not to worry. I smiled. I reassured him that I had texted the personal trainer that we were coming late, so it was no big deal. I said how cool his new glasses looked, and that we were having his favorite lentils for dinner later, and that I might even make rice.

I would rather report that the VW driver realized her timing was off, that she said something like, “I can see you’re busy. Would you mind finding me in the gym after your son calms down?”, and then departed with only a glance at my license plate to ensure honesty.

She didn’t. She started the Beetle inspection routine anew. When she reached the part about slurping diet soda and waiting for a response from me, I raised my left hand to block her from my view. I actually gestured, “Tell it to the hand, because the mama ain’t listening,” and concentrated instead on Martin’s needs. I held my hand aloft, ignored the idiotic car inspection, and comforted my son.

Finally, VW chick aspirated a noise somewhere between grunt and sigh, as if she just couldn’t believe my nerve, and stormed into the gym. Our confrontation skipped climax and proceeded directly to denouement. Here’s the denouement: I was shaken. I was shaken because this woman had been so oblivious to Martin’s plight. I was shaken because I’d let her get to me. I was shaken because, if there is one thing I try to impart to Martin, it’s that his mom is in control, and he’d just witnessed me almost lose control.

When Martin and I were ready to head into the gym, I took another look at the Beatle and noticed fresh flowers in the dashboard vase.

That driver didn’t deserve fresh flowers.

There are two more posts coming in the Del Sur series. I interrupted, again, to report that someone will always kick you when you’re down.

Del Sur III: Someone Has Got Him

Posted on May 23, 2016 by findingmykid

My grandmother spent the last 45 years of her life in the United States, and yet some part of her never left Germany. Her kitchen represented Germany circa 1947, eternally enshrined in Southern Florida. She shunned modern appliances and scrubbed the bare counters spotless. An ode to beer, carved in the old German lettering, hung above the table where she sat to smoke, drink strong coffee, and work her crossword puzzles (in German, natch).

Allow me to add that my grandmother was also glamorous, and one of the worst cooks I’ve ever encountered. No dowdy Hausfrau here.

Adrian, my husband, moved to the United States in 1999 and nationalized in 2009, and he too keeps one foot in his country of origin. Throughout each day, WhatsApp messages zip among him and his schoolmates. I stock our pantry (and wine cabinet) with homeland products. He even likes to have his suits sewn by his hometown tailor and shoes made by his preferred cobbler. During my our recent visit to South America, my mother-in-law asked me to drive across the city with her to pick up Adrian’s new loafers and boots.

“I don’t know,” I replied. “Martin will be bored, spending that much time in the car.”

“Martin? He doesn’t have to come. He can go to the playground with his cousins.”

The cousins in town that week ranged from 10 to three years old. I asked, “Will someone go with them?”

“Of course,” my mother-in-law said. “Don’t worry about it. Someone’s got him.”

Soon three cousins appeared in the apartment with their mother (my sister-in-law Claudia), gathered Martin, and left. My mother-in-law and I headed to the cobbler, a trip that took more than 90 minutes with traffic. Then my mother-in-law wanted to stop at the supermarket, and we ended up shopping an hour as she showed me the newest organic and gluten-free options. Just as I began to worry about Martin, I received an email from Claudia titled, “There are five!”, with no more explanation than a photo of Martin, his three cousins, and another kid I didn’t recognize, whom evidently the crowd had picked up along the way. Okay. No rush. My mother-in-law and I sauntered home three hours after I’d watched Martin whisked out of the apartment. We found my brother-in-law (the beloved bachelor uncle, Pancho) waiting. Pancho reported that Claudia was summoning him to the park to help her haul five kids home. I went along and found Martin. All was well.

The next day, Pancho (remember the “beloved” reference) sent me to a spa for an aromatherapy massage. When I asked what Martin would do while I was gone, the answer was again, “Don’t worry about it. Someone’s got him.” A couple hours later, relaxed and aromatherapied, I walked to Claudia’s apartment. I found Martin coloring with a cousin and discovered that the “someone” watching the children was Anna, a young German musician. Claudia’s husband is the director of the capital city’s philharmonic orchestra, and musicians from around the world seem to move through their home. I’m never quite sure how these arrangements work. In any event, Martin was fine. Anna assured me there’d been no trouble, and that for a snack Martin had eaten the special bar my mother-in-law sent. Okay.

At home, my childcare is regimented, and paid. Tuesday afternoons, a special-education teacher helps Martin participate in church Kids’ Club, and I have a couple hours free. Wednesdays and Thursdays, when I work in the City, Samara meets Martin at his school bus, makes dinner, handles supplements and any after-school activities, and puts him to bed. All other times, unless by arrangement Adrian or a babysitter is on duty, Martin is my responsibility. Someone has not got him. I’ve got him.

The two instances described above were not the only two when, during our recent South American week, I did something other than supervise my son. I went out for Thai food with Pancho and Claudia; Martin slept, and my mother-in-law was around in case he woke. I shored up a fee agreement for work; Martin played video games at Chuck E. Cheese—yes, that monstrosity has expanded into South America—with my father-in-law and some cousins so distant I’m not sure I could correctly identify their parents. I lingered over brunch with the adults; Martin was somewhere, with someone.

For any parent, residing with no family in the area is challenging. For the parent of a child with autism, who almost by definition requires more attention than a typical child, and in some cases requires unremitting attention, independence from family is downright burdensome.

Then again, how many parents with ASD children cannot even take advantage of whatever support system they do possess? When Martin was a bolter, I could not have allowed a German musician to supervise him and three other children. When Martin lacked proprioceptive awareness, and had no perception of where the jungle gym ended, I could not have sent him to the playground without one-on-one surveillance. When Martin needed physical restraint to sleep, my 67-year-old mother-in-law being in the apartment would not have given me assurance that I could leave. Adrian and I, moreover, enjoy the advantage of both our families supporting our biomed approach; we do not need to worry about well-meaning relatives slipping Martin sugar-filled cupcakes or cotton candy so that he can “be like other kids.”

I have newfound respect for my grandmother’s lingering attachment to Mainz, her ancestral home, and for Adrian’s hybrid North/South American lifestyle. There exists a comfort zone within a known culture and extended family—something they both lost, and something even I lost when, at 17, I left forever the rural Upstate county where I was born. As the number of children with autism skyrockets, I can only imagine our collective Sehnsucht will expand in tandem.

Meanwhile, I’m trying to find a way to grow the “someone’s got him” model here at home, with the resources available. I’m typing this post on a commuter train, on my way home from work. I just texted Samara to check in. Samara replied that she’s making dinner and Martin is “over at his girlfriends’ house,” meaning the twin girls who live across the street. First I panicked: Is Martin being a bother to our neighbors? What if someone feeds him an off-diet snack? Should I ask Samara to stop making dinner and be with Martin? Then I reasoned: The girls have been inviting Martin to their house, and their mother told me how pleased she is that everyone is playing together. Their mother also knows that Martin can’t have gluten, dairy, or soy, and that we avoid refined sugar. Plus, Martin polices his own food these days. Martin is fine playing at our neighbors’ house.

This week we have friends from Germany staying with us, including a ten-year-old boy, Leo, and his aunt, Heike. Sunday evening, 6:00 pm, Leo was bored and asked Heike to take him and Martin to the playground. I hesitated; the playground is a 20-minute walk away, we hadn’t eaten dinner yet, and on school nights Martin usually goes to bed by 7:45 pm. But how often does Martin get a special evening trip to the playground? He dropped his iPad and ran for the door as soon as he heard Spielplatz—playground—the only German word he recognizes. I started to give directions. Martin proclaimed, “I know the way! I will lead them!”, and off they went, Heike on foot, Martin on scooter, Leo on Martin’s bicycle.

I poured myself a glass of wine, and handed a second glass to Adrian, and said dinner would be late.

“Why? Where’s Martin?”

“Don’t worry,” I said. “Heike’s got him.”

dekoschilder57

Del Sur II: ¿Asperger’s?

Posted on May 14, 2016 by findingmykid

I read James Joyce for the first time when I was 17. It was A Portrait of the Artist as a Young Man, and it knocked my socks clean off. With the benefit of maturity, I’m pretty sure that most teenagers who read A Portrait of the Artist end up sockless, but 27 years ago, in high school, I felt singled out and special: James Joyce got me. He wrote the novel for himself and also for me. Stephen Dedalus was an alter ego for Joyce and me both. His stream of consciousness was also the wandering path of my own mind.

Martin speaks constantly nowadays. Constantly. It’s as if, those years when he lacked language to express himself, he built a bank of unsaid thoughts, and now the words gush, unfiltered. He alights the school bus yammering. Dinner is a series of, “Hang on, Martin. How about if the grown-ups get to talk for a minute?” He falls asleep holding court with his stuffed animals. Wednesday morning he materialized in our bedroom at 4:00 am and said something like, “I just woke up. My body woke me up. Maybe I’m not sleepy anymore? It’s still dark outside. Your clock says 3:54. Can I watch television? It’s Wednesday. I have school today. Why do you think I’m awake? Are you getting up now? My covers were tangled.” (I managed to convince him that his body woke him up because he needed to go to the bathroom. He went to the bathroom, I untangled his covers and tucked him back in, and blessed silence fell again.) I have become one with Stephen Dedalus. I’m living a stream-of-consciousness existence, and the consciousness is seven years old.

In South America, with few planned activities and much free time, I experienced just how very much Martin talks these days, and usually to me. He was a running soundtrack of our trip. “This morning I woke up at 7:37. Mommy, were you awake? Did you hear me get up? I looked at the clock, and it said 7:37. I wanted to get up at 7:00. I got up 37 minutes late. It was already light out. Tío was getting ready for work. I looked out the window and saw a balloon in the sky. Mommy, where were you? I found you in the kitchen. What time did you get up? What time did you eat breakfast? I played with my iPad while I was waiting for breakfast. Today my cousins are coming over. They are still in school. What should we do before they come over?” His cousins rang mute by comparison.

I am not complaining, not by any means. If you’ve had a child without functional language, if you once thought “I want you to do that again” was the linguistic apex of beauty and complexity, you understand: I, we, have fought for every sentence that Martin emits, and his chatter is our prize.

That’s what I remind myself when I’m hearing, for the 478th time, that there are three mommies and Martin needs to decide which is the real mommy. (Some episode of Mickey Mouse Clubhouse evidently had two Goofy characters, only one of which was real, or something like that, and Martin’s been running with the game for weeks.) He’s perseverating. The game is annoying. But the sentences are perfect, the syntax is solid, and every day he picks up new idioms.

So here is a question: Doesn’t this sound a lot like Martin has Asperger’s? Classic hallmarks of Asperger’s are a preference for the company of adults over children; long-winded discourse, regardless of whether anyone is listening; repeated return to one topic; speaking in a fast or “jerky” voice. Martin’s official diagnosis, now, is ADHD. The (mainstream) neurodevelopmental psychologist opined that Martin no longer meets the diagnostic criteria for autism. Asperger’s is a form of autism. What gives?

Good thing I’m not that into behaviorally based diagnoses. I followed Stephen Dedalus. I can follow this kid, wherever he’s taking us.

Del Sur, Interrumpido: Día de las Madres

Posted on May 10, 2016 by findingmykid

Sorry, so sorry! I have to interrupt my Del Sur vacation posts for a brief musing on Mother’s Day.

The children’s choir sang at our church Sunday, for Mother’s Day, and Martin sang with them. In addition, Martin was selected as one of three children to read a Bible verse, in front of the whole congregation. He was assigned 1 John 4:19: “We love because He first loved us.”

We began attending this church three years ago, after our family moved out of the City. Almost immediately, Martin began participating in the children’s activities, assisted by the unbelievable coincidence (or divine intervention?) of a Sunday school teacher who had recovered her own son from autism. For the first year, I was too nervous to let Martin participate alone, so I trailed him everywhere. I trailed him to the front of the church when the kids gathered around the pastor for children’s time, because he liked to wander to the organ and hit keys, or make himself at home in the choir’s box.

“Maria!” the pastor called one Sunday as I crept toward the chancel during children’s time, ready to check Martin, who was monopolizing the discussion. “Maria, please sit down. Martin is fine.” Of course, the congregation laughed. I was so embarrassed. After services, I asked whether I shouldn’t come quiet Martin when he talked too much. The pastor responded, “When you came here a year ago, Martin was too scared to open his mouth around me. If now he’s talking a little too much, I can handle that.”

I trailed him to Sunday school in the basement, because I didn’t want the volunteer leaders to feel burdened.

“No, you can’t come,” the Sunday school teacher told me one day. “Go back to your seat. I will send one of the older kids to get you if Martin has any trouble.” When I tried to sneak down and peek through the door, she caught me and shooed me back upstairs.

I trailed him to Tuesday afternoon kids’ club, or sent an assistant along, to make sure he could participate fully and the other children were kind. The kids’ club can be overwhelming; in fact, only this month have I allowed Martin to attend alone—which means Martin is now fully, independently participating in church.

Which brings us to this Sunday.

Adrian and I sat together, five or six rows from the front. Adrian doesn’t usually attend church, but Saturday evening at dinner, Martin had grabbed Adrian’s hand and asked so sweetly, “Daddy, will you not go to the gym tomorrow morning and come to the church to watch me instead?” During the opening hymns and readings, Martin sat with us, clutching the note card with 1 John 4:19.

When the children proceeded to the chancel to sing, Martin led the pack. Their first song, “Praise Him in the Morning,” involved hand gestures for morning, sun, serve, and so forth, and Martin more or less kept up. Then they sang the first verse of “The B-I-B-L-E,” stopping to allow the three children with Bible verses to read. Martin was third. He jumped and flapped his hands for just an instant while he waited, kind of a microburst of nervous excitement. When his turn came, with minimal prompting from a 10-year-old girl, Martin stepped to the microphone and said, “‘We love because He first loved us.’ First John, chapter four, verse 19.” He accentuated the –teen of 19 too much; other than that, the performance was stellar. Finally the children sang another verse of “The B-I-B-L-E” (all the verses are pretty much the same) and a concluding number before receiving their applause and scampering down the aisle to Sunday school.

Adrian recorded the whole performance on his iPhone. I watched from my seat, no concern that I would need to get to the chancel and assist or intervene. Even a year ago, I would have been on the edge of my seat with trepidation, ready to spring to action in case of disruption. This weekend, Adrian and I could have been any two parents proud of their kid.

During coffee hour, an older man I’ve smiled at but don’t recall ever speaking with approached me and said, “Your son did so well today. Even in the time I’ve known him, he’s grown so much.”

It’s going to take a lot to beat this Mother’s Day.

Del Sur I: This Completely Sucks—Wait! Did He Just…?

Posted on May 6, 2016 by findingmykid

Martin and I have spent last week visiting Adrian’s country of origin and my in-laws there. (Adrian did not join us. Evidently “family duty” falls entirely on me these days.) Back in January, I used each of four New Year activities as a heading for a “Martin right now” mini-essay. Now, a week in South America gives me five vignettes for pondering autism recovery. Without further ado:

Del Sur I: This Completely Sucks—Wait! Did He Just…?

I wasn’t sure we’d make it to South America. Our flight was set for Friday afternoon, first to Miami and then, overnight, farther south. The Sunday previous, Martin asked to leave a class play date early, asserting that he didn’t feel well. Adrian and I weren’t sure whether Martin was ill, or just overwhelmed by the crowd; in any event we took him home, where he felt well enough to ride his bicycle. Monday he went to school and to personal training, where the instructor reported that he seemed tired and “out of it.” He coughed a lot during the night but recovered Tuesday morning and went to school.

Lunchtime Tuesday, the school nurse called me. Martin had a fever. I brought him home, tucked him onto the sofa with his stuffed animals and Disney Junior channel, and kept him hydrated. The special-education teacher who cares for Martin Tuesday evenings opted not to come, because she is pregnant and didn’t want risk illness. I cuddled Martin. I didn’t want to leave him. But Adrian was out of town and I had tickets to the Rangers–Penguins game.

“…And then I called Samara, his nanny, and asked her to come watch my sick kid. I’m the worst parent in the world,” I told my cousin over our pre-hockey beers at Stout.

“It’s the Stanley Cup playoffs. There are no bad parents,” he replied, sensibly.

Wednesday morning Samara stayed with Martin while I, hung-over and stung by the Rangers’ loss, headed to my office in Brooklyn. When Martin still had a fever Wednesday afternoon, I returned home and drove him to his pediatrician, who took a nasal swab and diagnosed influenza. I explained that we were supposed to board a plane 48 hours later. Give him Tamiflu, the pediatrician said. No, I responded, Tamiflu is too dangerous. Any other options? You can try Oscillococcinum, but it won’t work, she said. Can we fly to South America? You can fly to South America if the fever breaks by Friday morning.

That gave us 36 hours to eliminate the fever.

I started Martin immediately on Oscillococcinum, which probably I should have done at least a day earlier. Thursday he was still sick, alternating naps with playing, his temperature bobbing. Thursday night I was climbing into bed around 11:00 pm when Martin called, “Oh, no!” He had vomited in (more specifically, all over, and around) his bed. I scrubbed Martin and tucked him into my bed—Adrian was still out of town—, cleaned the mess, and was pleased when he subsequently slept through the night without incident.

Friday morning Martin woke without fever. He still wasn’t 100%. But he stated, adamantly, that he was prepared to get on the airplane and visit his abuelos y tíos y primos. Tentatively, I packed. Martin remained insistent, even as he fell asleep on the sofa. At lunchtime, I conjured a deal: We would go to BareBurger. If Martin felt well enough to eat a full meal, and hold it down, we would continue to JFK.

BareBurger has organic meat and gluten-free sweet potato fries cooked in non-GMO canola oil. Not perfect but, some days, a godsend.

Martin met my challenge, we boarded the flight to Miami, he slept eight hours on the overnight flight to South America, my mother-in-law retrieved us from the airport, and all this serves as backstory to Saturday, because Saturday sucked.

Last February, Martin did pretty well with his paternal cousins. He’s improved a lot since then, socially, so this year I expected instant interaction. I’m so foolish. Saturday, when three of his cousins arrived, including one close to his age, Martin responded by thrusting his face into my mother-in-law’s sofa and pointing his butt in the air toward the other kids. Okay. Haven’t seen that behavior in a while. I covered by saying something like, “Oh, Martin, have you decided to be shy?”

Next, Martin refused to speak to his cousins and directed all comments exclusively to me. I covered by claiming his Spanish was rusty.

Next, my father-in-law attempted to show Martin pictures of a recent family vacation. The cousins snuggled with their abuelo and admired the photographs. Martin stood behind them all and broke into a crying meltdown because he hadn’t gone on the vacation. I escorted Martin to his bedroom, calmed him, set him up for some solo time with his iPad, then returned to the living room and covered by claiming Martin’s fever had returned.

When I have a fever, I cry. Tears flow from my eyes, even if I feel well and am not upset about anything. That’s where I got the idea to say Martin had a fever that was making him cry.

By the afternoon meal, Martin had pulled himself together enough to join us at the table, but he ate in silence and refused to interact. I remarked continually on how unusual the withdrawal was, how really tired and still-kind-of-sick Martin must have been.

All the covering, of course, was designed not to let Martin’s cousins think he’s weird.

Toward evening Martin managed to join his cousins on the sofa. He didn’t talk to them, and they, engrossed in television, didn’t talk to him, either. My sister-in-law, mother of the cousins, deteriorated the situation further by commanding her 10-year-old son, “¡Habla con tu primo! Speak slowly! Stop watching television and speak to your cousin! More slowly! His Spanish is rusty!” The hapless 10-year-old said, “Um, ¿hola, Martín? Hooooooooooooooo-laaaaaaaaaaa, Maaaaaaaaaaaaartiiiiiin,” at which the other cousins laughed and Martin looked confused.

When his cousins finally prepared to leave, Martin re-commenced crying because, he claimed, he wanted them to stay.

Super.

My kid was exhausted, overwhelmed, out of his element, and probably still sick. His cousins, I am certain, thought he was weird.

A couple hours later, with Martin asleep for the night, I dialed Adrian on FaceTime. I decided to spare him the full report and give him instead this 100% accurate, albeit heavily edited, account of the day: “Guess what happened? Martin learned to blow his nose. He was crying and stuffy from his flu, and I gave him a tissue and told him to blow, and it finally clicked. I’ve been trying to teach him for years to blow his nose. This afternoon he managed. Hurray! Everything is great!”

Exasperation. For a Change, His, Not Mine

Posted on April 24, 2016 by findingmykid

Martin’s gaining independence delights me for my own sake as much as his. When he could finally be trusted not to leave the house alone or endanger himself climbing the outside of the staircase railing, I could finally shower even when he and I were home alone. When he learned to swim, I could let him play on the swingset without constant fear of the pool 10 yards away. And when Martin finally started getting himself into our SUV—climbing into his booster chair, putting his drink into the cup holder, buckling his seatbelt—that meant no more straining my back to lift him aboard, no more standing in rain or snow waiting for him to arrange himself so I could push his seatbelt across, no more bypassing coffee shops that didn’t have a drive-thru because getting him in and out was such a PITA. Now he even precedes me into the garage, so that when I finally come out, coffee in hand, he’s already settled.

Last month Martin and I were twenty minutes into a car trip when, stopped at a red light, I turned around to speak to him and realized his seatbelt wasn’t buckled. “Martin!” I said. “What’s going on with your seatbelt? Why aren’t you buckled?”

“I forgot!” Martin sounded alarmed as he seized the seatbelt and buckled himself. “Oh, I forgot to put in on.”

“Be careful, buddy. We’re about to get on the highway. That would have really dangerous.”

I’m pretty sure that was a one-time occurrence. Still, since then, I’ve taken to confirming before we leave home, or asking once we’re underway, whether he’s wearing his seatbelt. I rarely remember to confirm before we leave home, which means I’m doing a lot of asking once we’re underway. “Martin, are you buckled?” “Yes.” “Martin, are you buckled?” “Yes.”

Monday I got a different answer. “Martin, are you buckled?” “Yaaaaaa-esssss!”

Exasperation! Martin, the king of repetition and perseveration, was exasperated with my question. As a bonus, his exasperated, “Yaaaaaa-esssss!” had a determinately snippy tone, almost like a pre-teen might utter.

That’s not the place I’ve heard exasperation. We’re on an airplane, and Martin just asked me whether he could order an orange juice. I said no, because he had a juice box earlier today at BareBurger. When Martin was younger, his response to that disappointment would have been a meltdown. His more common response, these days, is a burst of nonsense: “I’m never going to have juice again, ever! Throw all of the juice away! Mommy, we’re going to give the juice to another family!” His response just now was one that’s emerged within the last week or so: “Awwwww!”, that whining protest that children use when they feel they’ve been unjustly denied a privilege. I also got an “Awwwww!” when he wasn’t allowed to watch television at breakfast and when he couldn’t watch Wheel of Fortune because I had the Rangers game on.

I’m not sure I’m ready for all this neurotypicality.

How Can You Just Leave Me?

Posted on April 22, 2016 by findingmykid

Forever and a day have passed since I last posted a quote. Today I’m thinking about the lyric to which I clung when Martin was first diagnosed:

How can you just leave me standing

Alone in a world that’s so cold?

When you realize your child has autism and might never have a conversation with you, might never again spontaneously acknowledge your presence, it does not matter if you have a supportive co-parent, an extended family, a pastor to call on, friends who step up. None of that matters, because when you call your child’s name and get nothing, nothing, in response, you are standing alone, and the world is a place colder than you ever imagined.

Nor did it matter that “When Doves Cry” is a love song, not a parenting riff. I am grateful to the man who asked, “How can you just leave me standing / Alone in a world that’s so cold?”, because his words explained my own emotions. From alone in a cold world, I plotted Martin’s (and my) return to society, our escape from autism.

Prince lost two children, one to Pfeiffer syndrome and a second to miscarriage. I suppose we’ve surrendered them all to a place that isn’t so cold. In this life, things are much harder than in the afterworld. In this life, you’re on your own.

MARTIN MADE FRIENDS

Posted on April 20, 2016 by findingmykid

As an undergraduate I studied journalism. We weren’t allowed to use quotes in headlines; the rule was, “When the Pope says, ‘F**k,’ you can quote it in a headline.”

There must be some similar rule for all-capital blog headers. You come to my blog expecting a certain consistency: photos that conceal Martin’s identity, headers in initial-capitals only, maybe some italics but nothing fancy. If I start getting all wacky—curly q’s or design changes, exclamation points, politics, profanity, bold, all-caps—I risk the impression of level-headedness I try to maintain, right? Finding My Kid relies on words and the power of Martin’s journey, not typographic tricks.

Except today. I don’t have words big enough to express what Martin has done, so—

Welcome to the first time Finding My Kid is shouting a header at you:

MARTIN MADE FRIENDS.

We’ve lived in our suburban house for almost three years. The yards in our enclave are large, so although we have neighbors, they are not bumped up against us. We know the neighbors, as in, we know who they are. The teenager next door babysits for Martin. We wave at the others, chat occasionally in the street. (You caught us: Adrian and I are hardly social butterflies.) Martin, however, has never shown any particular interest in children who live around our dead end.

What I’m about to relay is second-hand, as told to me by Martin’s nanny, Samara. I can attest that Samara is guileless in her storytelling, a real just-the-facts-ma’am operative. I work in the City Wednesdays and Thursday, so Martin is with Samara. Last Wednesday, by her account, Martin asked to ride his bicycle after school. She agreed and told him to stay close to the house. He announced that he was riding to the neighbors’ house. Samara, who could hear the neighbors’ six-year-old twin girls (Martin is seven) playing in their yard, asked Martin to wait. Instead, he looked directly and mischievously at her, smiled, and raced across the street to the neighbors’ driveway. By the time Samara caught up, Martin was talking to the girls. He’d met these twins once before, when we participated in a volunteer project at their home. He did not manage, that time, to speak with them.

Samara checked with the twins’ babysitter, who said it was fine for Martin to play in their yard. Samara then returned to our house, within eyesight, to start making dinner. After ten minutes or so, she realized that Martin had disappeared into the girls’ house. She waited a while and then walked back across the street. The girls had other friends over, pre-arranged, and while one sister was playing with them, the other sister was playing with Martin. He stayed another 45 minutes or so. When he returned home, he was proudly carrying a knotted keychain the twin had made for him.

Thursday after school, Martin got off the school bus and asked to ride his bicycle. He rode directly to the neighbors’ house, and upon seeing Martin in their driveway, the twins came out to greet him. Samara again checked with the twins’ babysitter, who again gave permission for Martin to stay and play. The three kids ran around together in the yard for 30 or 40 minutes, until the girls had to go inside to work on their homework. Martin rode back home. To Samara’s surprise, after half an hour, the twins (homework apparently finished) arrived with their babysitter and asked to play some more with Martin.

Meanwhile, from my office in the City, unaware of these Thursday activities, I emailed the girls’ mother to thank her for hosting Martin Wednesday afternoon. She emailed back to say Martin had been a pleasure, that she was thrilled the kids were playing together, and that her daughters were at my house at that very moment.

According to Samara, the girls left our house around dinnertime, and asked if they could return on Friday. Martin has trombone lessons and a social-skills play group on Friday afternoons, so that wasn’t possible; Samara plans to arrange a visit this week instead.

Friday morning, Martin told me he was taking the knotted keychain to school. He wanted to show it to his classmates and tell them about his new friends.

When Martin was still acquiring language, sometimes he would use a phrase or idiom correctly, one time, and then those words would disappear, only to reemerge later with consistency; for example, he once answered a question with “I don’t know” but didn’t say “I don’t know” without prompting again for months.

On Sunday, four days after Martin made his twin friends, his class had a play date. Half a dozen boys showed up to run around a playground. Martin joined their chasing and pushing for a few minutes, then chose to climb by himself. I think he still gets overwhelmed in a crowd, even a small crowd of his own classmates. Later the same afternoon, back home, Martin saw a girl his age, a stranger, riding her bicycle in the street. Immediately, he asked to go ride his bicycle. Adrian, who went outside to supervise, reports that Martin was clearly interested in the girl but couldn’t bring himself to speak to her; even when Adrian and the girl’s father tried to introduce the two of them, Martin hung his head and looked away.

Martin has friends, arranged by me, with whom he plays regularly. Meeting the twins across the street, by contrast, marks the first time Martin has made friends. Based on the experiences Sunday afternoon, I would say that making friends is like saying “I don’t know” once was: Martin showed that he has the skill, and now the skill will disappear for a while before reemerging with consistency.

He just needs to gain some confidence and remember to use the skill he evidently now has.