Fledgling Attempts

Berkeley, California, last month. We have a couple hours free, so I bring Martin to Codornices Park to play. After a few trips down the 40-foot concrete slide, which he abandons when a rowdy group of unsupervised boys arrives, Martin wanders to the swings. I’m sitting on a nearby bench, kind of zoning out in the pleasant Pacific breeze. When I look up, Martin is talking to a boy on the swing next to him. I hear Martin say he’ll be seven in three days and ask the other boy’s age. The boy says he is already seven and asks Martin where he lives. Martin looks for me, waves, and yells, “Mommy, I’m making this boy my friend!”, and then tells the boy that he’s from New York. The boy asks what Martin is doing in California.

Martin replies, “We are going to visit my mommy’s client. She has one daughter and two sons.”

We are indeed going to visit one of my legal clients. The woman, however, has only one child, a daughter. Martin added the part about two sons because he thinks it is funny to lie.

The boy on the next swing starts to ask another question. Martin interrupts and says, “No, she doesn’t have any sons!”, and then starts laughing.

The other boys asks, “Why did you say she had two sons?”

Martin continues laughing, and doesn’t answer. The other boy gets off his swing and walks away, watching Martin over his shoulder as he goes.

Laguna Beach, California, last month. My brother Rudy is working, so Martin and I have time to kill. I take him to the main beach playground. Two other boys are there. I would guess them to be about six and eight years old—chronologically speaking, one on either side of Martin—and they appear to be brothers. They are supervised by an older woman, maybe their grandmother. I hear the brothers speaking English to each other; the grandmother calls to them in a Slavic-sounding language.

The younger brother begins to follow Martin, trying to engage him. At first, Martin pays him no mind and goes about climbing alone. The boy is persistent. He wants to play with Martin. He even ignores his older brother, who keeps tagging him and running away while yelling, “There’s no way you can catch me!”

Eventually Martin accepts the younger brother’s overtures, and they start playing together. At least, they’re engaging in the same activities: trying to climb over each other on the rope bridge, balancing on the logs. I don’t hear them speaking. The older brother continues trying to get the younger brother to chase him instead, to no avail. The younger brother is hooked on Martin.

Martin waves to me and yells, “Mommy, I’m making this boy my friend!”

I half-ignore the inappropriate declaration and whip out my iPhone to snap a picture, which I text to Adrian with the caption, “We are at a playground, and I think Martin has made a friend!!!”

The iPhone rings. It’s Adrian. “Tell me more,” he demands. I tell him that Martin is engaging in cooperative play with another boy. I promise more pictures as available.

When I get off the phone, I see that the older brother has given up trying to steal the younger brother from Martin, and all three boys are together in the playground’s covered structure. Better yet, I hear them talking. Names are exchanged. The older brother says something I don’t catch. Because Martin still lacks voice modulation, I hear his answer clearly: “My dad comes from South America!” That’s true. I hope it’s relevant. I hope Martin has asked what language the boys’ grandmother is speaking, and that one of the boys has told him that their mom or dad comes from somewhere, and that Martin has responded by saying where Adrian comes from. I hope.

The grandmother calls the brothers, and they leave without saying goodbye. If Martin is disappointed, he doesn’t show it. He returns to playing alone.

The last time we visited Laguna Beach’s main beach playground, two years ago, Martin ignored everyone and had a potty accident. Progress!

Laguna Beach again, two days later (the intervening day having been the Disney trip). I take Martin to a newer playground, at Aliso Beach. We’ve never been to this one before. It starts weird: Martin removes his shoes and runs onto the sizzling sand, which burns his feet. Instead of running off the sand, climbing on something, or dancing, Martin stays put and screams for me while his feet continue to roast. I get some Crocs on him, and the weirdness passes.

Two little girls show up together. Martin tries to engage them. He says hello and follows their lead, climbing where they climb. The girls acknowledge Martin but don’t return his interest. They continue playing together. Martin hovers nearby, plainly looking to be included.

More kids show up, until seven or eight total are playing. The bigger kids, the ones around Martin’s size, start running as a pack, chasing each other, kicking a ball, shouting instructions and comments. Martin gets left behind. He goes instead to a swing. Although he is capable of pumping his legs to propel himself, as high as he wants, he calls me to come push him.

When Martin is rejected, Mommy is his safe place.

Slide at Codornices Park. Martin is the top kid on the stairs, carrying cardboard in his left hand.

Slide at Codornices Park. Martin is the top kid on the stairs, carrying cardboard in his left hand.

Poor photo quality, because I had to zoom in from afar. Main beach park, Laguna Beach. Martin is on the right. His new friend is behind him.

Poor photo quality, because I had to zoom in from afar. Main beach park, Laguna Beach. Martin is on the right. His new friend is behind him.

In the Quiet Times

When Martin and I traveled to California a couple weeks ago, even though we had various engagements and appointments, we ended up with a lot of unhustled time. Martin and I always have a lot of time together, but usually we’re up to something. We’re trying to get breakfast accomplished so he can board the school bus, or he’s doing homework, or we’re driving, or the bath needs to happen because it’s really late and he should be in bed. In California, we had stretches sitting outside Whole Foods Market munching, visiting new playgrounds, hanging out in a coffee shop because we had an hour to fill, relaxing in the hotel, riding the Laguna Beach trolley. Time.

Martin aboard the trolley, taking in the sights. I think we could've ridden the trolley all day.

Martin aboard the trolley, taking in the sights. I think we could’ve ridden the trolley all day.

It was almost like a renaissance in knowing my son as a person. Martin still perseverates: He talks repeatedly about what interests him, like whether a waiter brought him a new fork when his appetizer was finished. Apart from the perseveration, however, Martin has become conversational. I can ask him a question and reasonably expect an answer, and he frequently adds a new question, or some tidbit of related information. We filled those California times, for the most part, by chatting. Imagine that—we were chatting.

Martin, I found out, prefers Southern California to Northern California. He would like to return to Southern California as often as possible. He’s nervous about the ski vacation we’re planning for December. He does not ever plan to become a vegetarian, because he enjoys eating animals. He thinks Taylor Swift is pretty. He will love George, our cat who moved to California, forever. He would rather swim in a pool than in the ocean. He might like broccoli even more than Uncle Eddie does. He misses Adrian when we travel. He considers Will his best friend.

Who knew? And who ever thought he’d be able to tell me?

Sorry for the poor photo quality. I snapped this shot of Adrian and Martin when we returned to JFK and Martin wanted to help by pulling the big suitcase himself.

Sorry for the poor photo quality. I snapped this shot of Adrian and Martin when we returned to JFK and Martin wanted to help by pulling the big suitcase himself.

Wait—That’s Bad?

In the post about Martin’s disastrous Disney morning, I also mentioned buying him a black coffee, hoping it would help.

In my effort to present an honest picture on this blog, I keep my readers abreast of my application for Autism Parent of the Year. Remember when I started my kid on glasses and Heilkunst the same day, then couldn’t figure out which made him puke? Or when I denied him the chance to connect with a boy at church? How about when I vacationed in Jerusalem while Martin pined and threw tantrums at home? Way to go, me!

Let’s add coffee to the list. Months ago, Martin asked to sample an iced coffee I was drinking. I drink my coffee black: There wasn’t any soy milk or commercial almond milk or carrageenan or whatnot to worry about, so I let Martin try a sip. I thought he would hate the taste. Instead, a practice began, wherein Martin drank my coffee. More and more coffee each time, until finally I was buying him his own black iced coffees and giving him hot coffee at home.

My reasoning? Brewed coffee is GAPS-legal, and the stimulant effect seemed to do Martin well. He seemed more focused. No harm done, right?

Not so much, is MAPS doctor informed me when I mentioned the coffee habit (and convinced her to believe me). A stimulant isn’t really so good for Martin, and I should stop with the coffee, ASAP.

Which was my honest intention, until things ran amuck at Disney. Coffee! I told my brother Rudy. Grab some coffee! It helps!

Except when it doesn’t.

Want to Know What Terrifies Biomed Parents?

In my last post, about Martin’s disastrous Disney morning, I mentioned a nasty insect bite on Martin’s foot that’s had me worried.

I suppose many parents worry about insect bites. They’re itchy. They can become infected. Some folks have allergies; I myself react so badly to mosquito bites that I have to rely on antihistamines. There is West Nile Virus to worry about and, elsewhere, malaria.

For many of us in the autism-recovery community, I think, bites provoke a special, heightened fear: Lyme disease.

Lyme disease, which is transmitted by ticks, primarily deer ticks, has become endemic in many parts of the United States. Lyme disease is also implicated in the issues that many children on the spectrum have. Worst of all, because Lyme disease is so hard to diagnose, and can mimic other problems, it is difficult to get proper treatment.

In November 2012, a test showed Martin slightly positive to Lyme and one of its common co-infections, bartonella. We treated him with a course of takuna and other antimicrobials, and later tests showed no indicators for Lyme. But who knows? I dread/fear another infection, or one already present and unable to be diagnosed. When Martin plays outside, I spray him with a combination of essential oil in witch hazel or apple cider vinegar. I’m not going to use the chemical repellants, and I need something to keep the bugs away.

When Lyme disease is transmitted, a tick bite often will form a “bull’s eye” rash, a spot surrounded by a red circle. Can you imagine how I freaked out when Martin’s babysitter, Samara, sent me this picture of Martin’s foot, accompanied by a note that the bite seemed to be bothering him?

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In retrospect, “freaked out” might be an understatement. I exited a business meeting to research Lyme onset and how long the rash should last. I posted the picture to an ASD group on-line, seeking advice. Within ten minutes or so, Samara sent another picture indicating that the bull’s-eye-like rash had faded already into a more traditional insect bite.

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That seemed to be good news; from my quick research, a true bull’s eye would last longer. Also, Samara reported that the bite was now itchy; according to the moms who weighed in on-line (sometimes trustworthy, sometimes not), a bull’s eye usually doesn’t itch.

These developments calmed me enough to stay at work and not demand that Samara bring Martin to meet me at the pediatrician’s office. I did email the photos to Martin’s MAPS doctor, who recommended additional anti-microbial drops as a preventative measure, and told me to visit the pediatrician or emergency facility, for antibiotics, if we noticed any other symptoms. We didn’t, thank goodness. We stayed on the extra anti-microbial drops, in case.

When the Disney morning from hell rolled around, my mind returned to the bull’s-eye-cum-mosquito-nibble. Sometimes ASD recovery feels like a continual series of freak-out moments.

Or maybe that’s just what parenting feels like.

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.

Who Gets to Join This Fancy Club?

Last night I had the pleasure of dining with an old friend from law school. Our discussion turned to Rachel Dolezal, the woman who resigned as president of Spokane’s NAACP chapter after it became known that she was born white, not black. My old friend is now a law professor; her research includes issues of race. She talked about three ways of identifying with a community (in Dolezal’s case, identifying with the African-American community): documentary, like checking the box that says “Asian-Pacific Islander” or “Hispanic” on a form; biologically, like asserting, “My grandparents came from Ukraine, so I am Ukrainian”; and aesthetically, like adopting traditions, tastes, customs, &c. commonly associated with the group. My friend opined that a person who chooses to claim a social identity, even if s/he does so only aesthetically (say, in hairstyle, language patterns, and manner of dress), should not be rejected if s/he also assumes the burdens associated with that identity: If Dolezal claims blackness, and willingly endures the discrimination that black women in the United States face, then her lack of biological identification does not disqualify her from the African-American community.

My friend the professor owns that theory: Any flaws in articulating it are mine alone.

We also spoke about Martin. I am sometimes asked why Martin—remember, that’s not my son’s real name—has a Spanish name. He is pale and blonde like I am and doesn’t otherwise “look” Latino; moreover, although Adrian, my husband, comes from South America and speaks English with an accent, he does not participate in “Latino culture” as we have (or imagine) it in the United States. (Excuse my sweeping generalizations; a blog post admits only so much depth.) My friend noted that Martin already identifies with the Latino community biologically and documentarily (we check both the “white/Caucasian” and “Hispanic” boxes), and to some extent aesthetically, because he is Spanish-English bilingual and has a Spanish name. Someday, my friend observed, Martin will have to decide for himself how much more he will identify aesthetically with United States Latino culture.

I enjoyed this conversation so much. It was personal, thought-provoking, and invigorating. Even better still, we were discussing Martin, and his future, and the topic was entirely unrelated to autism. I don’t know whether my friend is aware that Martin has autism. Martin was there, present, at my friend’s apartment. As we talked, Martin was playing, awkwardly but more or less appropriately, with my friend’s four-year-old daughter. Adrian and I are not public about Martin’s diagnosis, and I’ve never had occasion to tell this friend. Maybe she knows via the friends-in-common grapevine. Maybe not. Autism isn’t really the elephant in the room when I have Martin with me, not anymore. These days it’s sort of the toy elephant in the room. I can shove it in a pocket or tuck it behind a knickknack and hope no one notices.

That being said, as I sat with my friend and (especially) thereafter, my mind drew connections to autism. Martin has autism. I am part of the autism community. My family is part of the autism community. In terms of biological identification, we did not choose membership. Martin developed autism. It happened. Our entry tickets appeared. In terms of documentary identification, I suppose we do choose to join, out of necessity. If we want special education and other services, we have to check that (sometimes metaphorical) “autism” box.

Yes, I also check the metaphorical box to pre-board airplanes. Guilty.

Which leaves aesthetic identification. As an aesthetic matter, do I identify as a member of the autism community? Yes and no. No, insofar as we are not public about Martin’s diagnosis, insofar as we share on a mostly need-to-know basis. Our primary motivation for keeping Martin’s autism private is that he is getting better, and that one day he will recover, and then we don’t want him seen as “the kid who had autism.” In that regard, we refuse to assume one burden of the autism identity: We try to insulate Martin from the negative stereotypes associated with spectrum disorders.

Yes, however, insofar as autism has worked infiltrated the way I navigate the world, and any insult to the autism community feels like an insult to me personally, and by derivation to Martin. Remember when an ignoramus in an elevator called my friend Natasha’s pre-verbal son a thing? The offense hit me exactly as if he had called my son a thing. Two weeks ago, in a Brooklyn market, a minister—a minister by profession and not, I daresay, by vocation—yelled at my friend Stacey’s sensory-seeking son and then told Stacey to “get [her] son under control before he hurt[] someone.” Though I heard the story only afterward, from Stacey, I felt myself there present, as if the alleged minister had yelled at Martin and said those awful words to me. I identify with every report of a spectrum kid getting bullied, family who can’t afford biomed, or student whose school district denies appropriate special-education services. Regardless of whether we speak out or advocate, I am part of the autism community psychically.

I wonder what will happen when, for the most part, we lose Martin’s biological identification with autism, when he recovers? (I say “for the most part” because I envision him always having some level of immune sensitivity that requires special care.) I remember the episode of Curb Your Enthusiasm, when Larry David’s Los Angeles character, who’s always believed himself the son of Jewish parents, discovers he’s adopted and was born to Protestants. Immediately he begins doing stereotypical things like wearing a fanny pack, hunting, slamming beers. When we lose Martin’s biological connection to autism, will my aesthetic identification fade too? Will I ask, “Is autism bullying a problem?” or, “They have adequate social services for persons on the spectrum, don’t they?”

I won’t. I think once a person has experienced what it means to reside with autism, that feeling never goes away. Maybe it’s comparable to PTSD; I once saw a report indicating that mothers of adolescents and adults with autism experience chronic stress similar to combat soldiers. Martin is young still, his autism has never been “severe,” and shortly after we started biomed, he started sleeping regularly (other than stress, lack of sleep was the big threat to my own health), so maybe in my case the PTSD comparison is too dramatic.

Does Rachel Dolezel have a place in the black community? Not for me to say, because it’s not my community.

My old friend from law school has me thinking this: I’m really not interested in policing the membership of the autism community, either. If a person who is biologically and documentarily unconnected to autism wants to assume the burdens of autism, wants to internalize every insult the way I do now, then I welcome that person on board. We biomed parents are striving to reduce the biological autism community. Growing the aesthetic autism community can only help those who remain biologically connected to autism to fare better in this world.