Passing Storm

Last Wednesday, my brother Rudy and I took Martin to Disney in Anaheim. Rudy and I talked the day up: the characters we would see, the rides we would ride. Because one of Martin’s current interests is marching bands, and Martin always has enjoyed live music, Rudy mentioned that we might see a marching band too.

When Martin woke on Wednesday morning, at my brother’s home in Laguna Beach, he seemed—okay. Not great. Not particularly enthusiastic about the daytrip to Disney. Just okay. I fed him Treeline cashew cheese on flax-seed crackers for breakfast, and then we stopped for second breakfast at the Penguin Cafe, where Martin ordered a hamburger patty, fruit, and “bubbly water.” He ate slowly and seemed distracted. His voice modulation was subpar. “Indoor voice, bunny rabbit!” I reminded as he shouted his order at the waitress. “Use your indoor voice!”

The real trouble started in the parking lot when we got to Anaheim. “I don’t want to go to Disney,” Martin said when we exited the car. “I just want to go back to Uncle Rudy’s.” I wasn’t sure how seriously to take his words; Martin often reverses what he wants to do and doesn’t want to do, and his hesitations can be fleeting. I persuaded him to get on the shuttle from the parking lot to the park. On the shuttle Rudy engaged some kids who presented themselves as experienced Disneygoers and gave advice on rides and performances. Martin sat silently. He opened his mouth only to answer, with additional prompting, when someone asked him how old he was.

On the plaza outside the park, Rudy picked up a schedule of events and, trying to rouse excitement, told Martin that he would be able see a marching band (parade) at 4:30. Martin completely freaked. He did not want to see a marching band. He did not want to go to a park with a marching band. I took him to the restroom, had him sit on the plaza with Rudy, and finally negotiated an agreement that we would enter California Adventure, Disneyland Park’s companion. We would not see a marching band, I said. We would not enter Disneyland.

We made it inside California Adventure. I headed straight to the “Chamber of Commerce” to request a special-needs speed pass. The agent who helped us with the pass also put us on a list for the Monsters, Inc. ride ten minutes later. We didn’t make it, because Martin panicked at the idea of attending any attraction. He was full of anxiety. He walked aimlessly, crying and not crying and crying again. He couldn’t stop asking about the marching band, whether we would hear the band, whether we would go to the other Disney park. He fixated on 4:30, the time when Rudy had said the marching band would play (in the other theme park). He didn’t want this. He didn’t want that.

“Hey, I’m happy just to be here, walking around with you guys,” said Rudy, who had taken the day off work to accompany us. “Let’s go with it. Maybe he’ll find something he wants to do.”

Alas, Martin didn’t find anything he wanted to do, at least not then. I bought him a black coffee, hoping that might help. Nope. I bought him a box of organic apple juice as a treat, hoping that might help. Nope. Martin couldn’t bear to be still, couldn’t be held. He moved, whined, and panicked. As the situation became ever more challenging—“Mommy, will we see the marching band? Mommy, what time is it? Mommy, I don’t want to go to the Disney park. Mommy, can we hear the marching band? Mommy, is it 4:30?”—I considered throwing in the towel. I wondered if I should return to the “Chamber of Commerce,” explain that my usually stable son was having anxiety meltdowns that precluded our enjoyment of the park, and ask to return and use our $300 tickets the next day. Finally, when I ran out of ideas, Rudy saw openings at a nice in-park restaurant, asked about special-diet options, and guided us inside.

Martin managed to listen to the food options and order, interspersed with getting up to run around. Then he sat long enough to eat an entire order of boiled calamari, followed by a plate of gluten-free pasta with clams. (It was barely noon. Remember, he’d had two full breakfasts before we left Laguna Beach.) Rudy and I drank wine with our lunches. By then, alcohol was necessary.

By the end of lunch, Martin seemed a little better. He still was having trouble sitting still, but the crying eased. He went to the men’s room by himself. He didn’t get upset when I couldn’t find a dessert that he could eat.

After lunch he asked to enter one of the eight million stores. Thinking that something to clutch would ease the anxiety, I told him he could pick out a stuffed animal, and he chose an eight-inch Donald Duck. When we exited the store, Martin seemed calmer. He looked at a ride, a kiddie attraction with jellyfish that rise into the air. I asked if he’d like to go on the ride, and to my surprise, he agreed.

From then on, the situation turned. The anxiety didn’t disappear completely, but Martin asked about the marching band only every 10 or 20 minutes. The restlessness decreased. He tried half a dozen rides, including the Goofy’s Sky School roller coaster, despite his professed dislike of roller coasters. He asked to enter a courtyard and listen to a Raggae-style band. Rudy and I exchanged what-on-earth-is-happening? glances, and when Martin was out of earshot, verbalized those glances. In the end, we stayed at California Adventure until nearly 7:00 pm, and finished off the day waiting patiently in a long line, at Martin’s request, to meet Minnie Mouse. Once we were headed back to Laguna Beach, Martin skillfully introduced Donald Duck to his friend Chicago Bear, who had spent the afternoon guarding Rudy’s car.

We had one kind of morning, and a different kind of afternoon.

I’ve asked myself repeatedly what could have caused Martin to have such a disastrous morning. The full moon? Traveling? Lack of sleep because of jet lag? A nasty insect bite on his foot that’s had me worried? A healing reaction?

I suppose I will never know, which is unnerving. I’m glad it didn’t last.

When Martin, feeling better, said he doesn’t want to go back to Disney anymore, I decided to honor his wishes.


When this blog picks up a new follower, I receive an email informing me, and a link to the person’s profile, or own blog. Usually, I take a look. I’m interested to see who’s interested in Martin. Among the followers are fellow special-needs parents, foodies or Paleo-types who I assume like the recipes, “inspirational” folks, and generic bloggers who (I think) follow bajillions of blogs, hoping to procure reciprocal followers.

I also find that this blog is being followed, increasingly, by readers who self-identify as persons on the autism spectrum. I feel honored to have these followers, and I want to find a way to explain that, although my family is working hard to recover Martin from autism, it is not because anything is “wrong” with Martin, or wrong with living with autism. Unfortunately, I’m not talented enough to do that explanation justice; the issue is so delicate, and complex. So instead, I wrote this post—

Last week I encountered a new member at my CrossFit box, in the 8:30 am WOD frequented by parents who have put their children on school buses and are fitting in a workout before heading to employment. The new member was about my age and dressed in exercise leggings, a sport bra, and a tank top. The same way I was dressed. The same way at least two other women were dressed. The new member and I chatted and ended up walking together to the parking lot, where we discovered that our cars were parked next to each other. The same car, except hers is white and mine is gray. We both drive the European SUV model owned by, as far as I can tell, about 10% of the families in our suburban enclave.

Gosh, I thought as I climbed into my standard-issue vehicle, just how much of a conformist have I become? Here we live in a pleasant suburban area, where I stay at home (working some, though!) while my husband commutes to Manhattan. Our yard and garden are landscaped just like all the other houses, with similar plants in a similarly lush but uncluttered configuration. Like our neighbors, we change our front-door wreath by season: We display cranberries for winter, white flowers in summer, orange berries for “harvest season,” pinecones at Christmas. We fly our flag on the Fourth of July, have jack-o’-lanterns on the stoop right now, and will set out a ceramic snow elf after Thanksgiving. Martin and I attend one of the five local churches. Our family shops at the nearest Whole Foods Market, shows up for fairs and events, runs into neighbors at the pubs and restaurants. Through our actions, we have proclaimed ourselves just like everyone else.

The autism universe includes many people who argue against “changing” an ASD child and instead support some form of “neurodiversity,” in which relating to the world in an autistic way is accepted equally with relating to the world in a more neurotypical way. For example, a group called Aspies for Freedom advocates against most behavioral treatments, and all biomedical interventions, for children on the spectrum. The group, according to a blog post in its name, states, “Autism isn’t a tragedy, or a side-effect of genius—it’s a difference to be valued,” and stands against the “idea that being neorotypical (i.e. not autistic, or another psychological neurotype) is ‘better’ than being autistic.”

As I’ve written, I don’t share the view that encouraging acceptance of all persons means we shouldn’t try to heal the autistic child. The best way I’ve got to explain it is this: There are many ways in which I conform to a suburban-mom lifestyle. There are also ways in which I choose not to conform. I’m vegan. I don’t drive that European SUV around town if I can walk or bike instead. The landscaped lawn and plant beds around our house? Maintained by an organic gardener; we pay a premium to avoid the chemicals our neighbors use. When Adrian and I were buying a house, we chose our town, and not the neighboring village, because we value socioeconomic diversity more than having neighbors like our family. In these ways, I allow myself to be an exception.

And then there is at least one way in which, apart from any choice I make, I cannot conform. That’s autism. Because of autism, my son does not attend the local elementary school, does not play in the Saturday morning soccer league, and spends his free time in therapeutic settings.

So there are choices about conforming that are within my control, and choices about conforming that are outside of my control. I am happier when I can choose whether to conform, when it is up to me whether to fit in or to stand out.

That’s what I want for Martin. I want Martin to be able to choose whether he conforms, or whether he rejects expectations. When he enters a party, I want him to think, “Do I feel like working the room, or do I just want to grab food and skulk off to a sofa?” (I, Martin’s mom, usually grab food and skulk off. Any Myers & Briggs devotees out there? I’m INFJ, strong I.) What I don’t want is for Martin to feel like working the room is not an option for him. When it comes time for Martin to choose a job, I want him to think, “What do I like to do?” I don’t want him to think, “Does that job require interpersonal skills? Dynamic thinking? Will enough support be available for me?”

If Martin wants to act quirky, so be it. If he doesn’t want to make eye contact, so be it. If he doesn’t want to play sports, so be it. If he prefers to be alone, so be it. But these should be Martin’s choices, not choices that are made for him because an immune disorder, a medical condition, leaves him clumsy and makes it difficult to relate to others.

Our school district sends a behaviorist to our home each week. Recently I addressed Martin’s social progress by explaining that Martin has reached a point where he asks about other kids and wants to engage them but doesn’t seem to know how. The behaviorist said that wanting to engage is an important step. She advised that I might foster further development by observing other children with Martin and discussing strategies for approaching the children. Martin might find common ground, she suggested, by asking if the other kids like the same things as he does. What does Martin like? she asked. Does he like Yankees baseball, or Mets? Giants or Jets? Superheroes, like Iron Man or Captain America, that sort of stuff? SpongeBob? Pokémon? Disney? Frozen? Bike riding? Karate?

No, I replied. No, no, no, no, no, no, no, no, and no. Martin likes classical music and drawing pictures. He doesn’t watch television or children’s movies.

You’ve got to get on that, the behaviorist advised. Have him do the same things as other kids. Give him some common ground.

That weekend Adrian and I took Martin, wearing a sports jersey, with his feet in brand-new Spider-Man sneakers, to see Alexander and the Terrible, Horrible, No-Good, Very Bad Day, his first children’s movie outing with us. We are helping him conform now, so that later he can choose for himself.

To my readers with autism, thank you for coming to this space. I hope you feel safe here.


Two families we know with boys on the spectrum have made repeated trips to Disney World in Orlando. All four parents report hassle-free, autism-friendly vacations: luggage and organic groceries delivered directly to your villa (“Check a suitcase at LaGuardia. It shows up in your room!”); passes to skip the long lines for attractions; and a mix of exciting activities and, outside the main park, calmer spaces.

Adrian and I are considering taking Martin to Disneyworld. For me at least, I don’t want to go because I love Snow White or think Martin will be psyched for a magical castle. I want to do a Disney vacation with Martin because a Disney vacation is what American kids do. Right? Martin’s childhood, so far, has bypassed the standard markers. He attends a special school, he swallows a million pills and oils, he spends his afternoons in therapy, his friends have diagnoses, and he can’t eat—well, he’s not allowed to eat candy, or refined sugar, or McDonald’s, or processed food, or pizza, or anything much else I see in the hands of kids.

But he can go to Disney.

Despite the endorsement of other ASD families, we’ve been worried about whether Disneyworld really makes sense. It’s crowded. Noisy. Flashy. Crushing. Maybe the theme park would just overwhelm Martin.

Back in November, Superstorm Sandy led to an unplanned week without school here in New York City. In compensation, Martin’s school lost the scheduled February break but tacked two extra days onto the Easter break, and Martin ended up with eleven consecutive days without class. Martin and I utilized this vacation bonanza for his first-ever West Coast visit, to my brother Rudy and his wife in Laguna Beach.

Rudy came up with a great idea: As we were in Southern California anyway, why not take Martin to Disneyland? It could be like a trial run, a few hours at the original theme park that now seems like a junior version of the Orlando behemoth.

I jumped at the suggestion. On a Thursday morning Rudy and I collected Martin, his stuffed elephant, his afternoon supplements, and his special food and drove to Anaheim. We were headed, as we put it for Martin, to Mickey’s house.

I am pleased to report success.

The ticket agent gave me and Rudy and Martin big “I’m celebrating!” buttons; Martin insisted on pinning two buttons to his loose T-shirt, where they dangled all day. Inside the park he selected a fuzzy blue Sorcerer’s Apprentice hat (with mouse ears) to buy, and although it was 80 degrees and the thing was like a quilt wrapped around his head, he wore that all day, too. We stopped by guest relations. I explained that my son has autism and gave a little report on his strengths and weaknesses. The representative gave us an “accommodations” ticket allowing all three of us to use the special-entry lines, which are much shorter than the regular lines. And from there, we hit the rides.

With all the bustle, Martin was more distracted than usual as he wandered through the crowds. Nevertheless, he beamed. He rode “it’s a small world,” where he was scared to be in a boat but liked the children singing and the floating moon; flying Dumbo elephants, where Rudy showed him how to use the altitude lever; the Jungle Cruise, where the boat operator warned me before he fired a fake gun; and the carousel, which he handled like a professional based on weekends of carousel riding in Brooklyn. His favorite attractions were musical performances and the thrice-climbed Tarzan’s Treehouse.

Martin even survived the Roger Rabbit ride. Rudy and I assumed that because the Roger Rabbit thing was in Toontown, it would be mild. Holy cow, was that a mistake. It turned out to be a spinning car whipping us in circles through strobe lights, screaming, and demonic-looking animated characters. I was scared. Martin clung to me but didn’t cry.

We stayed in the park for seven hours. Seven hours! Martin got to bed late that night and slept well.

Two days later, on Saturday, Adrian surprised us all by flying into LAX. He’d ended up in Northern California on business and was able to sneak away for the weekend. Martin and I picked him up at the airport and then headed directly back to Disneyland for another seven-hour visit.

“Did you like Mickey’s house?” Adrian asked Saturday evening, back at my brother and sister-in-law’s house. “Was it fun?”

“Yes!” Martin said. He smiled.

“Would you like to go back to Mickey’s house again tomorrow?”

“No!” Martin said. He still smiled.

I think he was exhausted.

Everything in moderation. I’m sure that, by the time I manage to put together a family trip to Orlando, he’ll be ready again.

In his Sorcerer's Apprentice hat, Martin enjoys music from the "New Orleans" bandshell. The drummer threw Martin some beads.

In his Sorcerer’s Apprentice hat, Martin enjoys music from the “New Orleans” bandshell. The drummer threw Martin some beads.

During the Saturday (second) visit to Disneyland, Martin and I headed once again into Tarzan's Treehouse.

During the Saturday (second) visit to Disneyland, Martin and I headed once again into Tarzan’s Treehouse.

Back outside Disneyland, Martin and I strolled Balboa Island with Rudy and his wife (in front of us). I think we're imitating them.

Back outside Disneyland, Martin and I strolled Balboa Island with Rudy and his wife (in front of us). I think we’re imitating them.

Martin enjoyed the views of Southern California. This shot was taken on Balboa Island also.

Martin enjoyed the views of Southern California. This shot was taken on Balboa Island also.

After we returned to New York, Martin enjoyed carrying his Mickey Mouse doll, as here on the Lower East Side with Adrian.

After we returned to New York, Martin enjoyed carrying his Mickey Mouse doll, as here on the Lower East Side with Adrian.