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.”

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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!”

Hot Summer in the… in the… Suburbs

Autumn temperatures have descended upon New York. Finally. Summertime is better now that we live outside the City, but even so, I’m no fan. I don’t like heat. I don’t like air conditioning. I don’t like feeling pressure to fill long evenings. I don’t like the months without the New York Rangers, although the near back-to-back scheduling of the French Open and Wimbledon, followed later by the U.S. Open, eases my Rangers-related anxiety.

Let’s celebrate the opening of hockey season with a look back at what Adrian is calling the “summer of changes”:

  • At the beginning of summer, Martin liked to spend time in our pool but refused to jump in, put his head under water, or do any actual swimming. He insisted on wearing a full life vest, and he panicked if approached, because he feared someone might try to dunk him.

During an August visit to Texas, he spent hours lounging in my parents’ pool with Grandpa. I’m not sure exactly what changed, but one day Martin and Grandpa were dipping their heads under water together. Soon thereafter, Martin was going under water alone (and, in Martin fashion, demanding applause when he surfaced). He was also, with Grandpa’s help, pushing off the poolside and making rudimentary attempts at swimming.

Back home, Martin’s cousin Mandy, who can already turn somersaults and do handstands under water, came to stay with us for a few days. Martin hates to be outdone by Mandy. He started going deeper under water, sometimes headfirst, and kicking his way back to the surface. After Mandy left, we had a visit from a 10-year-old family friend who is afraid to jump in the water. Martin seized the chance to outdo an older child and made his first voluntary, if hesitant, leap into our pool. The very same afternoon, Martin was allowing Adrian to toss him—“one, two, three!”—from the deck into the pool, plunging under water, swimming five or six feet before surfacing, and immediately demanding, “Do it again, Daddy! Throw me in the pool again!”

  • The theme of Martin not wanting his head under water has been constant for years, since before we knew he had autism. When he was a baby, Martin and I took a “Mommy & Me” swim class. The exercises included tipping baby backwards until he was floating on his back and, with the instructor’s help, having baby dog paddle a short distance to his mommy. The tipping exercise terrified baby Martin; as soon as the back of his head touched the water’s surface, he would scream. (“Don’t worry,” said the instructor. “Some kids just take longer to enjoy the sensation.”) The dog paddling never worked, either; Martin panicked when released into the water and flailed instead of making the paddling motions.

Later, through HANDLE therapy and Anat Baniel Method, I learned about Martin’s primitive reflexes and why they might not have developed properly. Those infantile pool shortcomings were warning signs.

Until this summer, Martin retained the fear of lying on his back in water, including in the bathtub, where he would insist on sitting up or, at most, lying on his side with his head propped on a crooked elbow. Not long after he started swimming under water, I found him lying on his back in the bathtub, his head submerged up to his ears. “What are you doing there, Martin?” I asked. He lifted his ears out of the water and responded, “Oh, I’m just relaxing, Mommy.”

  • Of course, a kid who doesn’t like his head under water doesn’t like to shower. We have a full-spectrum infrared sauna at home. A key part of the sauna routine is showering upon exiting, to prevent the skin from reabsorbing toxins that may have been excreted through sweat. Until this summer, the shower was such a chore that I dreaded using the sauna with Martin. As Martin’s pool confidence increased, Adrian started dragging him into the shower after swimming (which I didn’t love, because I prefer to give Martin an Epsom-salt-and-baking-soda bath to detox after swimming, but sometimes you have to let father and son have their time). Showering got easier and easier, and correspondingly so did using the sauna. It’s a kind of trade-off: fewer detox baths for more sauna time.
  • Early in the springtime, we bought Martin a new bicycle. He’d grown so much over the winter that his old bicycle, which had training wheels, looked like a circus toy underneath him. We decided to be bold and optimistic with the new bicycle and not pay to have training wheels installed. For a few months it seemed like maybe we’d been too bold and optimistic. Adrian and I made almost no progress trying to teach Martin to ride. It was frustrating. By mid-July, we were ready to throw in the towel.

Martin participates in a terrific sports-and-training program for special-needs kids, which focuses on playground skills like shooting baskets and playing kickball. When I found out that that the head trainer was also running a bicycle-riding clinic, I signed Martin up immediately. The professionals possess magic skills that Adrian and I lack; within the first hour-long lesson, they had Martin up and riding. It took a few more lessons before Martin could push himself off and pedal together, or stop without tipping over the bicycle, and it took practice with Adrian before he could successfully use the hand brake to slow himself down instead of stopping suddenly. As of today, Martin still can’t stand up and pedal, as to power himself uphill. But that will come. Meanwhile, he rides four- and even six-mile journeys with Adrian.

Monday evening, as we pulled in the garage, late for dinner, with homework yet to be done, Martin said, “I’m just going to do some bicycling riding now.” I couldn’t allow that. But it was nice that he wanted to.

  • Shoe tying. This is another area where Martin didn’t want to be outdone by Cousin Mandy, and where we sought professional assistance. Cousin Mandy can tie her shoes already. During a car trip together in August, she decided to try teaching Martin. That didn’t go well. Eventually tears were involved. Nonetheless, it put the idea in Martin’s head, and after Mandy was gone, he asked me to help him learn. I tried. I failed. (It’s a good thing I don’t homeschool. One day Martin will agree.) The first week of school, I wrote a note to Martin’s occupational therapist listing shoe tying as one of our goals for the year. You guessed it: Within a week, the OT had him tying his shoes. Within two weeks, he’d mastered the double knot. Now Martin is concerned with learning to tighten laces sequentially and also tie “big laces,” because he wants to be able to—lace up his hockey skates.
  • That’s right. Martin is learning to play ice hockey. We had planned to try him this fall in a Mites league, or even down one age group on a Mini-Mites team. But he had no skating experience, and many of the kids on those teams have already been skating since age two or three, and suiting up for hockey for at least a full season, if not two. Adrian and I weren’t even sure whether Martin would like playing hockey. We didn’t want to frustrate him on the ice with kids much, much more skilled than he is. So instead we signed him up for private lessons. He loves the skating so much that now he wants to take an extra lesson each week, in order to reach stick-handling skills sooner.

I doubt that Martin is destined for hockey greatness. I was satisfactorily athletic as a child, competing in swimming, soccer, softball. Adrian, by his own reporting, was an utter flop at everything except skiing. We are hardly the type of world-class athletes that tend to produce other world-class athletes, and Martin is getting a later start, both in age and skill development, than most players.

Nevertheless, please take a minute to contemplate what it means to me to see my son on skates. If you read this blog, you know I love hockey. When Martin, my only child, was diagnosed at age two with mild-to-moderate autism, my dreams of raising a hockey player flickered, and maybe fizzled. Five years later, with the help of biomed and therapies, Martin is tying skates, wearing hockey gear, and getting ready to start learning stick-handling skills. Yes, he is.

Having a summer of changes is a beautiful thing, because “change” is not usually a development that sits well with a child on the spectrum.

And now, the summer of changes has drawn closed. Halloween is nearly upon us. Martin wants to be Donald Duck this year, which is a real problem; the duckier costumes are made for infants, small children, and (not sure what this is about) adults. Apparently no one between age five and age 18 is supposed to be Donald Duck. For my tall seven-year-old, I’ve had to resort to a “pajama costume.”

Maybe next year we’ll have the “autumn of more-grown-up costume ideas.”

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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.

Birthday Parties and Swimming Pools

Birthday parties and swimming pools. I hate them.

I suppose that sounds harsh. Who hates birthday parties and swimming pools?

The problem with birthday parties and swimming pools is that they expose Martin’s remaining social weaknesses.

Case in point No. 1:

In December, two boys from Martin’s class held a joint birthday party at a Chuck E. Cheese. If you’re an American parent, you’ve probably experienced a Chuck E. Cheese birthday party. Video games. Pizza. Noise and flashing lights. Giant automated rodents manipulating musical instruments.

(Digression. More than three decades ago, I had my ninth birthday party at a Chuck E. Cheese. It may be the fog of time to blame, but I remember the place very differently than today’s Chuck E. Cheese. In my memory, Chuck E. Cheese is dimly lit, with more stages and Skee-Ball, fewer arcade consoles, and—could this be pure imagination?—physical play like a ball pit. Also, a candy counter with mammoth speckled gobstoppers. The candy counter was out front, before the entrance turnstile, and I used to duck into Chuck E. Cheese just to pay 50¢ for a gobstopper so big that I had to extract it from my mouth, repeatedly, until I sucked it down to a manageable size.)

I have written before about Martin’s difficulties when we attend class play dates. Half the boys in his self-contained special-ed class have speech/language delays but no social impairments. The class breaks roughly into three groups: the boys who instigate some imaginary game or roughhousing and play together, the boys who play alone and seem uninterested in joining the others, and—Martin. Martin, who wants to participate in cooperative play yet still doesn’t quite grasp the “how,” or have the confidence, to make others include him. Martin, gazing through the window, never beckoned to enter.

Chuck E. Cheese in December was a disaster. The flashiness overwhelmed Martin, and he couldn’t, or didn’t want to, understand any of the video games. I managed to sit him in front of me on a fake jet ski and run a virtual course for a few minutes, until he (quickly) bored. Soon he went instead to fixate on the mechanical mouse band. He ran hither and fro in front of the stage, occasionally tried to climb aboard, refused to venture back to the game section, where his classmates played.

Late in the party, after the pizza, and Martin’s special GFCFSF pizza, I was happy to find Martin and Jack, one of the more social boys, together in a walk-in video console, all smiles, pretending to play the game. I asked, “What are you two doing?” Jack answered, “We’re shooting aliens!” At that moment, Benjamin, another social boy, appeared. He pointed to Martin and said, “You go home!” Then he yanked Jack’s arm and said, “Jack, come play with me!” Jack obliged, exited the video console, and scampered away with Benjamin.

Martin stopped smiling. He looked at the empty space beside him, and said, “Mommy, I’m ready to go home.”

Yeah. Unstructured group play dates suck. Birthday parties suck double.

Case in point No. 2:

Last week, we were vacationing in Florida with my father-in-law; Adrian’s 13-year-old nephew, Luke; and Adrian’s 11-year-old niece, Rosie. For two days of our trip, we were joined also by another couple and their almost-three-year-old son, Marty. (Pardon the confusion. Their son happens to have the same name as the alias I chose for Martin in this blog. Not my fault. I started the blog before they named their son.)

Luke and Rosie, who see us infrequently and (by Adrian’s choice) have never been told that Martin has autism, showed their cousin due attention, amusing him, sharing iPad games, keeping an eye on him near water. If Luke and Rosie perceived Martin’s differences, they may have chalked them up to the language barrier; neither Luke nor Rosie speaks English, and although Martin undoubtedly understood his cousins, these days he refuses to speak Spanish with anyone except Samara. For the most part, Adrian and I were pleased with the children’s interactions. Rosie even had Martin sleeping in her bed at night.

When almost-three-year-old Marty arrived, however, The Martin Show was over. Once an adorable, lightweight—pick him up! carry him around! push him on a swing!—preschooler is on the scene, who wants to hang around with an awkward, sometimes stand-offish first grader? Luke and Rosie turned their attention elsewhere, and Martin was left to his iPad.

One morning, while the rest of the adults went parasailing, I took Luke, Rosie, Martin, and Marty to the resort’s splash pool. Little Marty was in high spirits as Luke and Rosie sprayed him with water, helped him through tunnels, and solicited giggles. Martin, my Martin, responded by focusing entirely on me, asking just-to-be-talking questions. “Mommy, are we in Florida?” “Mommy, did your cat named Billy die in 2002?” “Mommy, are you looking at me?” I told Rosie that I thought Martin might be feeling lonely. Rosie sweetly approached Martin, took his hand, and asked whether he wanted to climb into the model pirate ship. Martin said, “Go away.”

Martin also complained, to me, that he wanted to leave the splash pool and go to the nearby swimming pool. No one else wanted to leave the splash pool, and whereas I couldn’t let either Martin or Marty out of my sight, I told Martin he’d have to wait. He waited, kvetched, begged. At last I told everyone to move to the swimming pool, hoping Martin might re-engage.

Another disaster. I’d forgot the way Martin generally behaves in a crowded swimming pool. He likes swimming these days, I think because of the sensory aspects. Those same sensory aspects seem to prompt him to turn almost entirely inward. He bounces around the pool steps, half-floating, tunes out other children, and if he speaks, directs the comments only to me. He had followed this pattern for three days already at the resort. I’m not sure why I thought it would change now, and it didn’t.

Luke and Rosie, for their part, took over the complaining, because they wanted to take Marty back to the splash pool. So after 15 minutes of Luke, Rosie, and Marty ignoring Martin in the swimming pool, and Martin ignoring them, I moved everyone back to the splash pool. Martin isolated himself again, this time with the added unhappiness of having had to accede to others’ wishes.

Golden. Martin competing with other children sucks. Swimming pools double suck.

I’m going to put birthday parties and swimming pools out of my mind. Instead, I will imagine fluffy kittens chasing butterflies through a meadow.

It’s not denial. It’s survival.

Martin and Marty at the splash pool, occasionally aware of each other.

Martin and Marty at the splash pool, occasionally aware of each other.

In a nice moment without other kids around, Rosie escorting Martin to the children's area.

In a nice moment without other kids around, Rosie escorting Martin to the children’s area.

In Praise of the Wonder Kid

Right around the time Adrian and I were considering a second child, Martin was diagnosed with autism, and we put off the decision in order to focus on getting Martin help. The years since diagnosis have been therapies and special diets and supplements and doctor visits and too little sleep. I was almost 36 years old when Martin was born. By the time Adrian and I cleared our heads enough to think again about a second child, we would have been looking at a 40+ pregnancy. That, combined with the increased risk of having a second child on the spectrum if you already have one, sealed the decision. Martin would remain an only child. All of our resources belong to Martin alone, for his recovery.

But alas, a typically developing sibling sure might help. A brother or sister could provide a full-time role model and, if we were lucky, a buddy to protect Martin from neighborhood cruelty, from slights and oversights and bullying.

With that in mind, allow me to sing the praises of Martin’s cousin, Mandy, who is also an only child. Mandy and Martin were born only ten weeks apart and, though they live four hours away from each other, have known each other since babyhood. They get three or four solid visits annually.

When Mandy came to our home last August—Martin had already turned five, and Mandy was about to—they were finally old enough that I thought Mandy might need some explanation of why Martin seems different. Immediately, I found an opportunity to address the issue: Mandy and her mother (my younger sister) arrived after Martin had gone to sleep for the night, Martin’s regular sitter was at the house, and Mandy was hungry, so I volunteered to take them out for pizza.

Ah, to have a kid who can go out for pizza!

“Hey Mandy,” I said. We were sitting in the pizzeria waiting for our order. “Do you know how to read?”

I knew she didn’t.

“Well, guess what?” I asked. I dragged my voice, to indicate that something amazing was coming. “Martin already knows how to read!” Indeed, Martin started reading young. He read fluently (comprehension is a separate issue) by age four-and-a-half.

Mandy opened her mouth in astonishment and gasped toward her mother.

Ah, to have a kid who gasps toward mom when surprised!

I went in for the kill. “But, Mandy, you know what? You are very good at talking”—she is—“and Martin is not good at talking at all. That’s how it is: Some kids are better at talking, and other kids are better at reading.”

I wasn’t sure this little speech would work.

It did.

Mandy and Martin’s visit that August was delightful. Mandy, who is naturally bossy, in the best way possible, forced Martin to interact constantly, and she decided to talk for both of them. Upon Mandy’s request, and Martin’s acquiescence, they both slept in the big bed in our guest room, and I knew when they woke up because I heard the giggling start. One morning as I stood in the kitchen, they walked through. Mandy had Martin’s arm over her shoulder and was pulling him along by the wrist as she announced, “We decided to go outside.” Martin didn’t mind Mandy’s commanding spirit. It brought out his best. He responded to her every whim, including when she thrust paper upon book in front of him and demanded, “Read this for me!”

The big test came when Mandy had been with us almost a week. Martin had a hippotherapy session, and I brought Mandy along. While Martin was riding, Mandy befriended the farm proprietor’s seven-year-old granddaughter. I could tell that Mandy was impressed to be playing with an older girl, and I thought, This is it. She’s not going to be so eager to hang around Martin when this big kid was in the picture. Maybe she’ll even be embarrassed by her awkward cousin.

Curse me for that lack of faith. As soon as she saw Martin dismount the horse, Mandy scampered over, grabbed his wrist, and ordered him to come play. Then she tugged Martin to the seven-year-old and said, “This is my cousin Martin!”

Mandy came to visit again this February, when my sister and I took the two kids to see The Lion King on Broadway. Saturday mornings Martin usually goes to the Equinox gym with Adrian and plays in the kids’ club there while Adrian works out. The Saturday morning of Mandy’s visit, Adrian volunteered to take both kids to the kids’ club.

After they returned, I asked Adrian whether Mandy had still wanted to play with Martin at the kids’ club, or whether, when in a crowd, she had gravitated to the typically developing children instead.

Adrian reported that when he came after his workout to pick the cousins up, Mandy was indeed playing with the typically developing children.

… And, Adrian said, Mandy was directing those typically developing children to make sure they let Martin play, too.

Thank you, Wonder Kid. Thank you for looking out for Martin.

Mandy and Martin on the beach, August 2013.

Mandy and Martin on the beach, August 2013.