Second Day, Not So Great. Or?

Martin’s school year started Friday before Labor Day. With the long weekend, the kids had three days off between the first and second days of school. Weird, right?

Labor Day weekend, Martin’s cousin Mandy was staying with us, because her school didn’t pick up until the following Wednesday. Martin and Mandy had an exhausting visit. Friday afternoon they attended a birthday party at one of those “inflatable party zones”—basically, a warehouse filled with bouncy houses. Friday, Saturday, and Sunday nights Martin and Mandy built blanket forts in our family room and insisted on sleeping in them (which meant not sleeping much). Saturday afternoon and Sunday afternoon we had guests. Although it was cool and rainy, Mandy dragged Martin into our swimming pool. Repeatedly. Monday my father and I took the kids to an indoor fun park with trampolines and climbing equipment, and then Adrian took everyone out to lunch. In trying to accommodate both kids, I let Martin have more sweets than usual: juices, fruits, homemade cake and ice cream.

More or less, it was the last great party of the summer.

When Tuesday rolled around, we received the bill for all that fun. I could barely rouse Martin, he was crabby at breakfast, and he refused even to say hi to the other kids at the bus stop. He ended up isolating himself: sitting alone on a rock, running back and forth, checking out. (Mandy, meanwhile, stood next to me and chatted amicably with the other moms.)

When the bus came, Martin clung to me and said, “Mommy! Mommy!” but then boarded without additional delay.

I escorted my father and niece to Port Authority to catch their bus, and then I returned to my home office, because I hadn’t worked all weekend and had to play catch-up. I was glad to have work to keep me occupied; I couldn’t shake the feeling that Martin would have a tough day, being as tired as he was and also thrown into such a new situation.

I arrived at the bus stop early and waited ten minutes before any other parents showed up. When the bus came, Martin disembarked with the other kids and hugged me. He seemed okay. We walked the five minutes home, where I eagerly pulled his binder to check for any notes from his aide.

I found a note. It said: “Martin had a good day.”

Martin Out of Paradise

Fact: In Costa Rica, Martin slept beautifully. He requested sleepy-eyed early bedtimes, dozed promptly, rose only after 10 or 11 hours. To my knowledge, he woke during the night just once, when a thunderstorm lingered.

Fact: Since we’ve been home (one week), Martin has slept poorly. He lies awake for an hour or more, tosses or talks during the night, wakes too early. Some nights he’s had as little as eight hours’ rest, and poor quality. He’s been exercising plenty: swimming, bouncing at a birthday party, bike riding, chasing his cousin. He’s eaten better than he did in Costa Rica. He’s in familiar surroundings. He can’t sleep.

Fact: In Costa Rica, Martin’s attitude improved. He seemed carefree, less focused on fixations like his iPad and Mickey Mouse Clubhouse. He ate new foods. He walked home alone from a local bar/café.

Fact: Since we’ve been home, Martin’s attitude stinks. He’s been whiny, contradictory, and engaging in opposite-talking. (“I’m never going to use my iPad again! Throw it away!”) He’s grouchy. This morning he refused to try peanut butter on apple. He loves peanut butter. He likes apples. Apparently the idea of combining the two proved too much. An hour later he wandered away from his own bus stop.

Fact: I don’t know what to do with this information.

Martin in Paradise

For the last ten days we’ve been vacationing in Costa Rica. The “we” comprised me, Adrian, Martin, my mother and stepfather, my two older brothers, Adrian’s mother, and Adrian’s brother. Nine people. Nine people together in a house on the beach, off the beaten path.

I had trouble finding organic fruits and vegetables, and I suspect the papaya we ate may have been genetically modified. I used olive oil that was partially refined. The cookware was aluminum. Martin had seafood daily, mercury be damned. He ate way too much rice, probably too much fruit, and even homemade fruit juice. I found some locally made treats with oats, nuts, and raw agave, but I couldn’t get any intel on whether the oats were gluten-free. I gave Martin the treats anyway.

We ran out of several supplements, enzymes, and antimicrobials (poor planning on my part), including mucuna, serrapeptase, MitoSpectra, Nose & Lungs, cumanda, and Boluoke.

We had no set schedule, so Martin never knew what we might throw at him in a day. We didn’t do his vision exercises. His glasses sat abandoned, unworn.

We pushed his limits, sometimes over his protests. We took him zip-lining and horseback riding, made him a passenger on ATV’s and jet skis, insisted on swim lessons.

He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.

In the face of these shortcomings and stress, Martin—soared. Martin’s had trouble sleeping these last couple months. In Costa Rica, he volunteered bedtime by 7:30 pm and slept 10 or 11 hours unbroken. His iPad requests, which at home are a near-constant whine, decreased markedly. On our few prior visits to beaches (I’m not a fan), Martin has refused to let the salt water rise above his knees. After a week in Costa Rica, he bobbed neck-deep as the ocean waves tossed him to and fro. Daily, he refused to leave the beach.

He conversed with his uncles and answered strangers’ questions. He used new expressions.

Overcoming recent food-choice rigidity, he rediscovered tropical fruits and ate mango, pineapple, and papaya with abandon.

Because we were without North American television, Martin could not watch his fixation of late, Mickey Mouse Clubhouse. He managed without complaint. Instead, he drew pictures.

One afternoon, Martin was at a local bar/café with Adrian, my brother Eddie, and my brother-in-law, Pancho. The establishment was about 300 yards from our house, past a swim pool, an exercise plot, and a several haciendas. I was in the house showering when Martin entered the bathroom and said casually, “Hi, Mommy. I came home alone.” I told him to scram—after all, I was showering—and his statement didn’t quite register until I was toweled and dressed and found a text message from Adrian: “Martin is coming home. Make sure the door is unlocked?” Adrian had indeed authorized Martin to walk home unaccompanied, and Martin had achieved the feat, without getting lost or wandering off.

Just sayin’, I would not have let Martin walk home alone. But Adrian did, and out of the decision came some measure of independence.

I’m not saying that 10 days in Costa Rica brought a miraculously fully recovered Martin. Not by a long shot. He was too distracted to get the full benefit of those swim lessons. The pictures he drew were all of marching bands or orchestras. (He used to draw only pictures of The Beatles. Now he draws only marching bands and orchestras.) He engaged in a lot of oral stimming: “mouth noises,” I call the sucking-and-clucking sound he makes. He showed virtually no interest in the other kids scampering and riding bicycles in the neighborhood. Our last full day in Costa Rica was a bad day; sneezing and maybe teetering on sickness, he requested another round of zip-lining but then melted down and refused to participate. He repeated himself, nervously. He spaced out.

Still, overall, Costa Rica brought us a behaviorally improved Martin. Indisputably.

I don’t know what made the difference. Sea water? Clean air? Reduced EMF’s and cellular radiation? Extended family? Time to be a kid?

We’re on the plane now, headed home to the New York metropolitan area. (You know how I love to airplane-blog.) Martin just told me he wants to watch Mickey’s Clubhouse, when it’s on at home. I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life.

Would I have that in me? Would Adrian?

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.

Vacation Winner

In my postscript to “Recovery to Go,” dated August 19, I wrote that Martin and I were taking two vacations in a row: first visiting Austria and Germany with Adrian, and then renting a cabin in the Adirondacks with my sister and niece. Having confessed that much of our European vacation comprised dragging an unenthusiastic Martin from site to site, I promised to ask Martin which vacation he liked better and post the results here.

This morning I remembered to have that conversation with Martin. We were in the car, on the way to the dentist.

“Martin,” I said, “do you remember that in August we took two vacations?”

“Yes.”

“The first vacation we went to Austria and Germany, and the second vacation we rented a cabin with Aunt Kristie and Cousin Mandy?”

“Yes.”

“Which vacation did you like better?”

“Both!”

“Both? You liked both vacations the same?”

“Yes.”

“Are you sure? Maybe you liked both vacations, but one of them you liked a little bit more? Did you prefer one?”

“I liked the cabin on the lake with Poppa John, Abuela, Aunt Kristie, and Cousin Mandy.”

“You did? Why did you like that vacation?”

“But-because it was my favorite!”

So there you have it. To the extent Martin had a preference, it was the Adirondack cabin.

Hardly clear-cut, though. Hardly.

I Have None

I’m in Europe, on family business. My mother came to New York City to help Adrian with Martin, and I departed JFK, bound for Heathrow and then Germany.

Saturday, before I left, Martin was symptomatic. I won’t go into the symptoms. By now you know them.

Getting a few days’ distance from Martin usually does me well, in terms of perspective and rejuvenation. Nevertheless, leaving him is heart-wrenching, and I want everything to be perfect. I want him to be having the best day ever, so that I can think, Everything’s under control. I can be away.

Saturday I left thinking, Everything’s a disaster. I have no right to leave when he needs me here. Probably I’m just going to make things worse.

Please don’t look for a point to this post. I have none.