Okay. Some Things Are Right

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

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

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

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

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

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

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

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

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

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

Take a deep breath.

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

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

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

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

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

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

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

April 2019. Martin in—Spain!

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

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

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

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

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

Del Sur III: Someone Has Got Him

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

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 RangersPenguins 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!”

New Year!: We Met One of Adrian’s Colleagues for a Drink

New Year’s Eve, for our après ski, we met one of Adrian’s colleagues at a distillery. This particular colleague, like most, doesn’t know our son has autism, and whereas the colleague has typically developing children in the same age range, he would be able to spot any differences. We didn’t want Martin to “stand out.”

One way Martin still stands out is ordering food. When we are in a restaurant, he likes to order by himself. That’s fine, if we are in a restaurant whose menu we already know. When we are in a new restaurant, I have to ask eight million questions. The hamburger—is that just ground beef, or is the beef mixed with bread crumbs? The sweet potato fries—do they have any breading or coating? What kind of oil are they fried in? What else is fried in that oil? The grilled calamari—could we get that without the garlic butter? And the whole time I’m asking, Martin interrupts, usually to yell what he wants: No, no! I can get the calamari! Can I get the calamari? I don’t want salad! Occasionally he also has a mini-meltdown over what’s available (or not available) for him to eat, in which case I take his hand and lead him outside until he calms down.

So we were glad to arrive twenty minutes before Adrian’s colleague, have a chance to peruse the menu (the colleague suggested the location), and come up with the best option, both nutritionally and in terms of avoiding a meltdown. By the time the colleague joined us, Martin was occupied with my iPhone while happily downing a grass-fed steak and French fries cooked in canola oil.

Wait. Potatoes? Canola oil? Do we allow Martin to eat potatoes and canola oil?

Generally speaking, we do not. Potatoes are an occasional summertime treat, organic and roasted on our outdoor grill. Canola oil almost never works. Most canola oil comes from genetically modified crops, and even non-GMO “Canadian oil” is refined (hexane-processed?), bleached, degummed, deodorized rapeseed oil in which omega-3 fatty acids have been turned into trans fatty acids. Why would I let Martin ingest that?

Well, because we were traveling, and when we travel, and encounter new situations, and have to “perform,” some restrictions loosen. A bit.

Traveling, depending on where we go (for example, I can do more at my parents’ in Texas than I can in a suite in Chicago), alters:

  • Diet, to a modest extent. Martin’s diet is always free of gluten, dairy, soy, corn, and refined sugar. Beyond that, some specifics slip, including the aforementioned potatoes and canola. It can be hard to ensure organic food, or even non-GMO. He might also miss a day or two of broth. We traveled to Utah on a Saturday. He went without bone broth Saturday, Sunday, and Monday. By Monday afternoon I’d got my hands on a marrow bone and simmered a pot of broth.
  • Cookware. Even at home, my cookware isn’t perfect. Stainless steel remains puzzling, in terms of purity, and I’m never sure if my cast iron is seasoned properly or clean. In any event, at home I cook with All-Clad and cast iron, with mostly stainless-steel or wooden utensils. Whenever we travel, we rent accommodations with a kitchen, and unless we are staying long enough to justify a purchase—for example, when we were in Europe for ten days and I bought a fine strainer and a pot, both of which I brought home—I use what comes with the place. That might mean a plastic spatula, or even, egads!, nonstick pans.
  • Detox baths. At home, Martin takes two or three detox baths (two cups Epsom salt and one-half cup baking soda) a week, depending on whether he’s also used the sauna. Epsom salt is heavy to carry, and I don’t always trust other bathtubs. What product was used to cleaned it? Could I rinse it well enough? There is no point in trying to detox Martin in a tub with excessive chemical residue.
  • Exercises. Right now, we don’t have HANDLE exercises to do. Martin does, however, have four short exercises per day for his vision/neuroplasticity. At least, he has four short exercises when we are not on the road.

We do have absolutes, stuff that doesn’t change, regardless of where or when we travel. Martin takes his supplements, always. I’ve handed him pills in rental cars, measured drops at airport gates, mixed powder into restaurant beverages. I also find him fermented foods, daily, wherever we are. Martin no longer takes probiotics, so fermented foods are his probiotics. Plus, it’s easy enough to find sauerkraut or another cultured vegetable these days, if not kombucha.

The last absolutes? Love, and plenty of attention. Martin always gets those.

Afterward

It’s 3:25 a.m. Obviously, I’m awake. Jet lag. Adrian and I are on vacation in Turkey (far from Ankara, where the horrific suicide bombings occurred Saturday), celebrating our anniversary. Martin is home with my parents.

As I lie awake, my mind wanders to this question: What will I do with myself when Martin is recovered enough to be close to typical? This autism journey has consumed my life. What will be my next act?

These types thoughts tend to happen on vacation, when for a change I’m seeing the forest, not focused on the trees like dinner tonight, ordering supplements, planning travel to doctors, trying to keep current on science. Twelve months ago, in a post started on vacation in Germany, then finished back home, I wrote about finding the “me” in Martin’s recovery, about trying to have some life of my own. I have been improving at that, writing more (non-blog) and working 20 hours per week. Still, bio-med life feels like a treadmill. Pauses are rarely allowed.

I don’t know what my next act will be.

But I’m looking forward to it.

Istanbul. This scenery, giving me pause.

Istanbul. This scenery, giving me pause.

This Vacation Brought to You by Autism Recovery

I’ve posted sporadically the last few weeks because Martin and I were abroad. Martin had the week off school for Presidents’ Day, so I packed him up for a visit to Adrian’s country of origin, in South America. We flew overnight, Friday to Saturday. We spent Saturday at my mother-in-law’s apartment in the nation’s capital. Sunday morning my mother-in-law, my father-in-law, Martin, and I flew a couple hours farther south, to the small town where my sister-in-law Cecilia lives with her children, Luke and Rosie. You may remember Luke and Rosie from an earlier post; they vacationed with us in Florida after Christmas. Adrian’s other sister, Claudia, also came south, from her summer home, with her three children.

Martin plays in the sunny capital, before we headed farther south.

Martin plays in the sunny capital, before we headed farther south.

Confused? Here’s the cast of vacation characters: me, Martin, my mother-in-law, my father-in-law, my sister-in-law Cecilia, Cecilia’s children (ages 13 and 11), my sister-in-law Claudia, and Claudia’s children (ages 9, 7, and 1).

My mother-in-law, Martin, and I rented a lovely apartment with a well-equipped kitchen where I could prepare stock and breakfasts. Half a mile away, Cecilia allowed everyone else to stay in her three-bedroom home: my father-in-law, Claudia, and five children, including the two who usually reside there. Why did they all go for that arrangement? No idea.

Martin and two Curious George sock puppets check the view from our vacation apartment.

Martin and two Curious George sock puppets check the view from our vacation apartment.

I anticipated challenges on this vacation, and my anticipation was not disappointed. Adrian’s parents know that Martin has autism, but his sisters and their children do not. Adrian has opted not to tell them. He explains that we don’t see his sisters often, and if Martin is going to recover from autism, as we expect he will, then there is no good reason to affix a label that, especially outside the United States, might haunt him long after its applicability. Although I don’t agree with Adrian’s logic or decision, I respect his right to handle his own family. Ergo, mum’s the word.

I could explain away Martin’s ultra-restricted diet with the catch-all “food allergies.” How could I explain his awkward attempts to play? (“Um, he’s nervous because he doesn’t speak much Spanish at home.”) How could I explain his tendency to hide his face when adults speak to him, and in response to any questions only wave backwards? (“He’s so shy! Just wait till he gets used to you.”) What about his appearing, sometimes, out of it? (“Can you imagine? He’s still so tired from the travel.”) How about the fact that he couldn’t spend the night with his cousins, as he wanted to, because I have to carry him, asleep, to the bathroom during the night to make sure he doesn’t wet the bed? I was happy that none of Martin’s South American cousins is exactly his age; the fewer bases for comparison, the better.

If Adrian’s sisters noticed Martin’s challenges—and I assume they did—they kept silent, except once: Cecilia said, “You have so much to do, with Martin.” I responded, “You mean with his food and all the time it takes?” She said, “His food, of course, and also his attention, how you need to watch him all the time.” We were in a crowd, when she said that, and when someone else came by, that conversation fell fallow. I was left wondering whether Martin’s autism will be a fact that everyone knows and no one mentions. Families have those facts.

Martin didn’t “fit right in” with his South American cousins, unfortunately. How could he? For starters, the other cousins live in the same country and see each other often. Martin’s the youngest, save for the one-year-old who doesn’t yet run with the pack in any event. Martin speaks Spanish, but without as much confidence as English, and even his English, while now conversant, remains awkward. And then there’s the autism elephant lurking. I wished I could have told at least Luke and Rosie, the oldest cousins, that Martin has autism. I wanted to see them take ownership of Martin, count him as one of their own and defend him against, for example, the 10-year-old named Valentín who hung around our group and treated Martin poorly. (¡Cállate, cállate!, he complained, pushing Martin away whenever Martin tried to share.) If Luke and Rosie knew why their little cousin is different, I reasoned, they would be more likely to look out for him. We might even have obviated the moment when Martin, in frustration, shut a door on his baby cousin because his seven-year-old cousin said everyone could come into the bedroom except Martin.

Forget all that. Let’s talk about what went right. Over a week-long vacation, Martin had virtually no meltdowns. Not when the horse-riding instructor brought sandwiches for everyone and, because I hadn’t realized we’d be eating, I had nothing for Martin. Not when a neighbor barbecued sausages for the children and, because I couldn’t verify the source or ingredients, Martin had to have a steak instead. Not when we rented bicycle-carts and Martin, as the youngest, had to ride in the front basket seat instead of pedaling. Not when he didn’t get a sleep-over with his cousins. Not even when my mother-in-law was late so I made him walk with me the dusty half-mile to Cecilia’s house.

Totally unrelated to autism. Just a chicken that I saw in someone's yard on my way to my sister-in-law's house and really liked.

Totally unrelated to autism. Just a chicken that I saw in someone’s yard on my way to my sister-in-law’s house and really liked.

I attended a concert, a German trio, with my sisters-in-law and mother-in-law. Of the cousins, only Martin and nine-year-old Matías opted to come. Martin took his cue from Matías. He mimicked everything Matías did. When Matías rose from his chair and sat on an aisle step instead, so did Martin. When Matías moved back a step, so did Martin. When Matías played with the cable barrier, so did Martin. When Matías inexplicably made a fist and shoved it in his mouth (I’m serious), so did Martin. At intermission, when Matías decided to leave and go find the other cousins in the theatre café, so did Martin. Admittedly, that terrified me. Martin, for an hour, in a food establishment with a dark, railing-less outdoor deck on a lake, attended only by one-to-13-year-old cousins, none of whom knows Martin has autism and might need extra supervision? What could have gone wrong? Everything could have gone wrong, and nothing did. After the concert we reclaimed all kids and went to an Italian restaurant, where Martin ate GAPS-compatible fish with capers, showed off how he could cut the meal himself, and didn’t complain that the other cousins had pizza. That night Martin chatted by phone with Adrian—read that again: Martin chatted by phone with Adrian—and renewed my fears by saying, “In the café, Luke gave me a bar to eat.” A bar? A what? Crap! The next day, however, I learned from my sister-in-law Claudia that she’d slipped Luke a pre-approved fruit-and-nut bar in case Martin wanted something. Good, thoughtful in-laws.

Martin and his cousin Matías prepare to enjoy a concert.

Martin and his cousin Matías prepare to enjoy a concert.

Martin went horseback riding with his cousins. The seven-year-old cousin was able to ride by herself. For Martin, the instructor had to tether Martin’s horse to his; Martin was too distracted to hold the reins and guide his horse. Still, Martin went, and happily. The first expedition, I was looking for some exercise and hiked alongside the riders. The second expedition, I had a massage scheduled and left Martin and the other cousins to ride on their own with the instructor. A couple hours later, in post-massage haze, I was at a café, sipping coffee with Cecilia and my mother-in-law and musing about whether we should go find the children, when the whole gaggle of them entered, with Luke holding Martin’s hand. They’d finished up riding, surmised that we were probably at the café, and come to find us. Martin took no issue with the uncertainty and evolving plans.

Martin riding with cousins and friends. Happy trails.

Martin riding with cousins and friends. Happy trails.

Our vacation site was two hours’ time difference ahead of New York, and South Americans keep late summer hours. We rarely ate dinner before 9:00 or 10:00. Martin hit the sack at midnight or so, and slept peacefully until 10:00 or 11:00 am. He tried new foods. (Among them was horse jerky. My bad. I should have read the label more closely.) When I forgot his swimsuit, he swam in his underwear. He watched television, which we don’t really do at home. He relished drinking fresh juice from a hippie-van-cum-juice-stand parked on the beach. He had a good time. Not an autism-accommodated good time. Just a good time. The kind of good time that might not have been possible if we still dealt with sleeplessness, limited language, meltdowns, and the absence of social interaction.

I’ve been bugging Adrian to ask his sisters, or at least one of them, for impressions on how the week went, and how Martin did. So far, no luck getting him to do so.

The last day, before we started the 16 hours of flights home, I asked Martin what had been his favorite part of vacation. He didn’t even hesitate:

“When I rode horses with my cousins the second time and you didn’t come.”

He wanted to be with his cousins instead of me. One cool thing about being an autism parent is that you can find an achievement in any insult.

P.S. As to Valentín, the 10-year-old who didn’t like Martin and showed it, eventually, when no one else was listening, I told him off. “Valentín, Martin is only six years old. He’s a guest in this country, and he doesn’t speak Spanish well. All he wants is to play with you and his cousins. So enough with the ¡Cállate!, got it?” He got it. Even if Martin’s cousins don’t defend him yet, I can.

All of a Sudden, It Happens

Martin and I are on a flight to Chicago, to see Dr. Zelinsky. Two things happened in the airport:

First, the metal detector. I have my qualms about the effects of metal detectors, but I let Martin pass through them. It’s a nod to convenience, I suppose. Plus, at least it’s not one of those x-ray body-scan machines. I have even more qualms about them. Passing through the metal detector used to be a challenge for Martin. He might be scared, or refuse. When he agreed to pass through, he rarely succeeded without setting the machine off by touching its sides—either he clumsily bumped them, or his hands naturally flew apart for sensory input and balance. After one or two tries, the TSA agent would let me walk though with Martin, picking him up or holding his arms down and his body steady.

Today as we approached the metal detector, I lined Martin up and said, “Walk though carefully! Don’t touch the sides!” To my surprise, Martin stood ramrod straight, pasted his arms to his hips, and walked directly though the machine. Then he iced the cake: On the other side, instead of wandering away, he stopped and waited for me.

Second, the Windy City. As we sat at our gate, Martin watched the information screen and asked questions. “What does that number mean?” “Is that a picture of our airplane?” At some point, he looked at the destination name and said, “Chicago is the Windy City.” I couldn’t remember ever having told Martin that Chicago is called the Windy City, so I asked, “How do you know that?” Martin replied, “Because my daddy told me.”

What’s the breakdown? On and off for months, I have tried to get Martin to understand the question, “How do you know that?” If we are driving and he says, “That’s a hotel,” I ask, “How do you know that?”, trying to prompt him to say that he saw the sign or read H-O-T-E-L. Instead, he responds, “But-because it is.” If he makes an assertion beyond his experience, like, “All kids except me eat popcorn!”, I say, “How could you know that?” He responds, “But-because they do.”

This morning was no such exercise. I wondered how Martin knew Chicago’s nickname, and I asked without thinking about whether he could answer. His perfect response, missing even his trademark “but-because,” surprised me a second time.

Two big successes inside ten minutes! Still, you know me: I must always temper my enthusiasm. While we were waiting in the jet bridge, another passenger saw our seat numbers and remarked kindly, to Martin, that we were all sitting in the same row. This prompted Martin to ask me whether our row had three seats together, or two. When I told him that our row had three seats together, and that someone would sit next to us, he had a little meltdown and yelled, “I’m not ever going to sit in two seats again! Not ever!” He was crying as we entered the plane.

Did I mention the two successes?

Recovery To Go

We’re on an airplane. I’ve drafted blog posts on airplanes before. Since his autism diagnosis four years ago, I’ve traveled with Martin from New York to South America (usually to Adrian’s country of origin), California (where my brother lives), Texas (where my parents live), Illinois (often, for doctors). Now we’re on our way to Germany, where I have family, and starting with a side trip to Austria and Slovakia.

“That seems like more trouble than it’s worth,” said a German friend when I told her our plans. “You’ll have to haul his pills everywhere and spend your time finding his special food. Who knows how much he’ll even understand, or remember?”

My friend is right, partly. Everywhere we travel, I tote a massive shoulder bag of supplements, prescriptions, and homeopathic drops. I won’t let the bag be x-rayed, so crossing airport security can be an hour-long exercise. (This trip, it wasn’t. The TSA agent at JFK left all the bottles in the bag, ran a swab or two, asked a few questions, and let me through in less than five minutes. I suspected she must be a mom.) As soon as we arrive in Vienna I will search for organic groceries. We stay in hotels with kitchenettes so that I can cook Martin’s meals and broth. I have organic chicken sausages nestled with an ice block in a cooler-lunchbox that I’ve tucked into Martin’s pajama supply.

Despite my best efforts, Martin will go without some of what he gets in the States. Ashwaganda, for example. The new supply didn’t arrive in time. Or camel milk. I couldn’t find a reliable source for raw camel milk on the go. I didn’t even search that hard. It felt futile. Plus, Martin will have to deal with jet lag, uneven sleep times, unfamiliarity. No way he’s going to be at his best. We’ll lose some recovery ground.

So—why? Why drag Martin across Europe? Why not take an easier vacation, or do a staycation, where I can control Martin’s environment?

I guess it comes down to me and Adrian surviving this autism thing, however long it lasts.

To be sure, there are more kid-friendly vacations. We have lovely beaches and camping venues within driving distance. But I don’t like the beach, and neither does Adrian, although we enjoy hiking, neither of us knows how to camp. For better or worse, we travel more on the “seeing culture” model than on the “relaxing with nature” model. And for better or worse, Martin is our son. Until his independence, the family model is his model.

We could leave Martin home. We’ve done that. Adrian and I went to Israel without him, and to Montreal. On the other hand, we’re a family. I want to share with Martin what I love (hockey!), even if he doesn’t get it yet. Adrian wants to share with Martin what he loves (um… the Vienna Philharmonic, dead composers’ birthplaces, and tragic battlefields, I guess), even if Martin doesn’t get it yet.

We’re parents, after all, and as parents we want Martin to have the experiences that might stick with any kid. Some, he obviously enjoys. Rock climbing. Concerts. The Lion King. Disneyland. Others, we push the envelope more, like when Adrian and I wedged Martin between us on a jet-ski and gunned it to max speeds. Or roller skating. What a disaster! Martin looked like a Looney Tunes character running. Finding fun is trial-and-error for any family. Autism takes so much from us already. Why should we have to be the only family that doesn’t distress the kid once in a while?

Now we’re on a train, from Vienna to Munich. I wish I could write that Martin is observing the placid Austrian countryside, remarking on the farmhouses and windmills. Alas, he isn’t. He’s wearing earphones and playing Garage Band on his iPad. More honestly still, he’s stimming by playing single notes repeatedly. He had a rough few days in Vienna and Bratislava. He is tired, floppy, whiny, unfocussed, and doing his best to make our lives miserable.

Nice try, Martin! Our lives are not miserable. We had a lovely time sightseeing yesterday in Slovakia, where I learned, from T-shirts, that Slovaks are living under a delusion. Apparently they think Marián Gáborík (I just learned that his name has accents!) is “the King.” I always liked Gáborík, and to be sure, he is “a King,” in the sense that he plays now for the Kings. But he isn’t the King. That’s Henrik Lundqvist. Silly Slovaks. Then we returned to Vienna and had dinner at the Palmenhaus. Without us realizing it, Martin ate a sugary sauce on his fresh-fruit dessert. Ooops! Hyperactivity and stomach distress! Then dinner was so relaxed that Martin didn’t get to bed until 10:30 pm. No wonder he’s a mess today.

Adrian and I liked to travel before Martin was born, we liked to travel before Martin was diagnosed, and we like to travel now. Life goes on, even in autism recovery. ¡Vivan las vacaciones!

Postscript: When we return from Europe, Martin and I are ditching Adrian and heading to the Adirondacks for a week, to share a lake house with my sister and niece. “We’re taking two vacations!” Martin declares; I like him to have time with his cousin, and since he attends year-round school, we have to pack travel into the few weeks he has off. Martin is so much better, these days, at expressing preferences. “What was your favorite part of today?” Adrian asked him after we visited Vienna’s Schönbrunn Palace and its extensive gardens, including a playground. “My favorite part of today was when I played in the sand at the castle playground,” Martin answered. After we leave the Adirondacks, I’ll seek Martin’s opinion on which vacation was better, Europe or the lake. I’ll post the results here.

When in doubt, find a playground. This is Martin just hours after we arrived in Vienna. He doesn't speak German, but it took him no time at all to learn the word

When in doubt, find a playground. This is Martin just hours after we arrived in Vienna. He doesn’t speak German, but it took him no time at all to learn the word “Spielplatz,” which means playground.

Take that, doubters! I snagged all this organic swag, plus some organic chicken, at a Spar grocery store right next to our hotel in Vienna.

Take that, doubters! I snagged all this organic swag, plus some organic chicken, at a Spar grocery store right next to our hotel in Vienna.

Martin has been feeling better since we arrived in Munich. In this photo, he is checking out a fountain in Marianplatz, in the city center. He just tossed in some Euro coins.

Martin has been feeling better since we arrived in Munich. In this photo, he is checking out a fountain in Marianplatz, in the city center. He just tossed in some Euro coins.

Martin, checking out the English Gardens in Munich. The setting was so photogenic that, a second after this, I handed the camera to a companion and jumped into the picture.

Martin, checking out the English Gardens in Munich. The setting was so photogenic that, a second after this, I handed the camera to a companion and jumped into the picture.

Der Process

I’ve written before about my scrapes with the Transportation Security Administration.

I travel with Martin, a lot. When we fly, I carry his myriad pills and drops and liquids and compounded formulations in a heavy-duty black shoulder bag. (It’s repurposed. Once upon a time the bag held my breast pump.) Many of the supplements that aid Martin’s recovery are homeopathic and otherwise imprinted or finely calculated. I will not allow the supplements to pass through the security x-ray, because it can scramble their delicate properties.

Because of Martin’s special diet, I also have to carry food in my knapsack. In the past, my go-to has been nut butter with rice crackers. Now I like coconut butter with crackers. The TSA doesn’t like either.

The scene changes each time we pass security.

Regarding food, I’ve been told, at various times:

(1) nut butter is no problem and can come on the plane;

(2) nut butter is a problem unless it is in a sealed, unopened container;

(3) nut butter cannot be in a sealed, unopened container because all those containers are too big;

(4) nut butter is exempt from security if I’m carrying a doctor’s prescription for Martin’s restricted diet (I always am);

(5) our doctor’s prescription for Martin’s restricted diet makes no difference to what we can carry on the plane; and

(6) we can bring nut butter on the plane only if I leave the security line, take all of my belongings and Martin to the food court, request to-go containers from some restaurant, divide the nut butter into three-ounce portions among those allegedly available to-go containers, and return to security with the newly packaged servings. On the day that this food-court option was given, the TSA agent insisted that the repackaging could be accomplished in the ten minutes before our flight was to board. It became one of many flights on which Martin ended up without nut butter.

I never know which story we’ll get about the nut butter, or coconut butter, when we reach the front of the security line. And yet, traveling with Martin’s food is a piece of cake—sorry—compared to carrying supplements that should not be scanned.

We’ve been in Texas, on Thanksgiving vacation. Last week, when Martin and I flew from New York to Texas, we encountered a sympathetic TSA agent. I unloaded everything from the black bag into a gray security bin. The agent took the bin immediately, asked what it contained (“My son’s medications”), used one swab to check all bottles quickly, and called Martin a beautiful boy. I repacked the black bag, and we were on our way in less than five minutes.

This morning, preparing for our flight home from Texas, I requested a hand-search of the supplements. I unloaded the several dozen bottles from the black bag into a gray security bin. No one came to take the bin. A TSA agent had me stand in front of the metal detector holding it, as passenger after passenger walked by, each (it seemed) examining the contents of my bin as s/he entered the metal detector. I heard, “Hand-check on one!” called several times, but the agent in charge of hand-checking decided to restock the gray bins of three lines before showing up, so I stood in front of the metal detector a full five minutes with my bin. At length a female TSA agent approached and offered to set my bin aside while we waited for the elusive agent in charge of hand checking. Then I stood, bin-less, another two or three minutes until I was invited to pass, not through the metal detector, but through a full-body scanner, the next line over.

Adrian traveled with me and Martin today, thank goodness. While I stood there waiting, Adrian accompanied Martin through the regular metal detector (long-time readers of this blog know my misgivings about the metal detector) and collected my laptop, knapsack, boots, and jacket from the conveyor belt. On the other side of the full-body scanner, I was informed that, because I had requested a hand-search of Martin’s supplements, I would be subject to a full-body pat-down. I’ve received the pat-down treatment maybe twice before; its necessity appears randomized. A male agent ushered me into a glass-wall-demarcated waiting area and told me to await a female agent. I stood, on display in my glass-walled enclosure, until yet another agent moved me to a chair. Some twelve minutes had elapsed since I took off my boots for security.

The female agent materialized, donned latex gloves, and told me to stand with arms outstretched while she ran her hands over my body. Meanwhile, a male agent began swabbing each individual bottle of Martin’s supplements. He swished the swab cloths through a machine, which at one point sounded an alarm. He relayed the alarm news to the TSA supervisor, who alit from his perch behind us and asked which bottles were in the alarm group. Apparently 18 bottles were in the alarm group. The TSA supervisor instructed the agents to open each of those 18 bottles and retest with a sample stick.

Next the supervisor asked, “Are these all your belongings?”, indicating the black bag and assorted supplements.

I should have said yes. Instead, I answered honestly: My husband had the rest of my belongings.

And where was my husband?

Over there. I indicated where Adrian had taken Martin to sit on a bench.

The supervisor demanded Adrian’s return. Adrian complied, carrying his briefcase and my knapsack.

The supervisor ordered a hand search of my knapsack, which had already cleared the x-ray machine. Then, for reasons unclear to me, he told the agents to seize Adrian’s briefcase and search that, too. Adrian surrendered the briefcase and returned to the bench to occupy Martin. By now 20 minutes had elapsed since I removed my boots.

The female agent sat me in the chair again, to run her hands over the soles of my feet. With the pat-down thus concluded, she began opening bottles of supplements to sample.

“You can’t do that,” the male agent admonished. “Make her open each bottle.”

He meant me. I rose from my chair and picked up a bottle.

“You can’t do that,” the male agent admonished again, this time directed at me. “She has to hold the bottle while you open it.”

I gave the bottle to the female agent, who grasped it in a latexed hand while I unscrewed the top. Then she dangled a paper sample stick over the top of the bottle, dropped the paper stick into a magic container, and asked me to recap the bottle.

Then she picked up the next bottle. The next of 18 alarm-group bottles.

The male agent opened a small cooler containing Martin’s refrigerated supplements and an ice pack. He told the female agent she should sample the refrigerated items, too.

Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed. Bottle open, paper stick, magic container, bottle closed.

Beside us, the male agent emptied Adrian’s briefcase. Bond indentures, credit agreements, and a Longhorns t-shirt spread across the table. More than 30 minutes had elapsed since I removed my boots.

The female agent glanced at the supervisor, now atop his podium again, and whispered, “I’m sorry about all this.”

I have a son with autism who takes a million pills and drops a day. Everyone here is staring at us. I am all for airline security, but why do some TSA agents have to make this an extended production while others let us through with hardly a pause?

I said, “These are my son’s medications. I really don’t like them handled.”

She shook her head. “I know. I’m sorry.”

Bottle open, paper stick, magic container, bottle closed.

The male agent announced that he couldn’t fit Adrian’s laptop back in the briefcase. Adrian left Martin sitting on the bench and came to gather his documents and other belongings.

Bottle open, paper stick, magic container, bottle closed. Finally the agent finished, leaving me with an empty black bag and a table covered with bottles. I started returning everything to the bag, embarrassed by a few tears of frustration.

Some 40 minutes after removing my boots, I carried the black bag and my knapsack to the bench where Adrian had the boots waiting for me.

“Is it always this bad?” he asked.

“No,” I said. “Sometimes it’s better.”

We started walking toward our gate.

“And sometimes they do all that while I also have to keep track of Martin. And then it’s even worse.”

No Yeast?

Poor yeast, gets all the blame.

I posted yesterday that Martin is in Symptomatic Itchy-ville, and that a yeast imbalance is to blame.

We made it to the doctor appointment (an hour late, with that “patchy fog” to thank), and the doctor thinks Martin’s sandpaper skin looks more like massive detox than yeast overgrowth. To the credit of this theory, we entered Symptomatic Itchy-ville right around the time last month when we reached full dose of takuna, a detoxifying agent.

That’s Martin’s way: His digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates. One thing good, one thing bad.

Isn’t that just like our life right now? Martin skips and perseverates and self-stimulates by running laps. He’s grouchy; everything is a tantrum. He was up, in our shared hotel room, from 2:00 am-5:00 am, laughing hysterically in detox mode. (I know he wasn’t actually drunk. I made him carry a jug of drinking water into the hotel last night, a Herculean effort that left no little hands free for smuggling alcohol.)

Those challenging aspects make it easy to overlook the good that’s happening. In the doctor’s office yesterday, Martin jumped on the trampoline higher and with more coordination than ever. He jumped in circles and announced, “I’m jumping in circles.” When he was trying to fall asleep last night—late last night—he called from the bedroom of our hotel “suite”:

“Mommy!”

Parked on a sofa in front of the ChiefsSteelers game, I responded: “I’m eating dinner, Martin. Go to sleep.”

“Maybe later you’ll come to bed and shut the bedroom door.”

I’d left the door between the bedroom and main room ajar, so Martin wouldn’t be scared. I called, “Do you want me to shut the door now?”

“No. Maybe later.”

It might not sound like much, but that’s a conversation, or the beginning of one, in any event.

We’re surviving the not-so-good because there is also good.

And maybe because it’s not yeast. I’m not sure I have the strength for another full-out war on yeast.