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.”


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.