Tag Archives: community

Otra vez, aquí estamos. Hasta Septiembre

Posted on by findingmykid
8

We are back in Central America. Alas, not in Nicaragua, el país más bonito de mi corazón. We planned to return to Nicaragua this summer, and held fast to that plan as long as we could. During June, however, the political violence reached as far south as where we stayed last year, in the Department of Rivas; north of Rivas city, a young man was killed defending a tranque against pro-government forces. Shortly thereafter, the director of Martin’s day camp (and one of Martin’s Nicaragua-based cheerleaders-in-chief) notified me that they would likely not have enough kids to run camp this year. At that point, we canceled our summer house rental, sent part of the deposit to a trusted friend in Rivas to distribute among local families most in need, and hastily assembled a new summer.

This is of course an autism-recovery blog, not a political blog, and I am no expert on Central American politics. I will limit my comments about the Nicaraguan situation to this: Daniel Ortega is unleashing this violence upon the very families who, a generation ago, fought for the right to elect him. The people of Nicaragua don’t deserve these troubles. Please look for ways to support Nicaraguan self-determination.

So Martin and I find ourselves on the other side of a border, in Guanacaste, Costa Rica (with hopes to cross, later, into Nicaragua at Peñas Blancas and visit our friends there). You may recall that Costa Rica was where I first noticed how well Martin does in the Central American environment. Even as we mourn our time in Nicaragua, I am grateful to be here: grateful that we were able to rent a house on short notice, grateful that I found a community with a day camp, grateful for daily saltwater swims and abundant  sunshine. This area is populated by gringos here temporarily, chasing the pura vida, and I don’t have much hope of finding the same kind of lasting connections we made in Nicaragua, where the gringos tend to be long-term ex-pat residents. No worries, though. Everything else is grand.

Martin started day camp last week. I had corresponded in advance with the camp director about Martin’s food and environmental allergies. (When you’re talking about Central American activities, “allergic to horses” becomes surprisingly relevant.) The tougher conversation, about Martin’s real challenges, I left to have in-person; giving advance notice, in writing, of Martin’s social and attention deficits tends to create an image that can be hard to shake, even after Martin himself appears. I remember still the remark of a German relative, years ago, when she first met Martin: “Als ich das Wort gehört habe—Autismus—habe ich mir was ganz anders vorgestellt”: “When I heard that word—autism—I imagined something else entirely.” We no longer have the A word to fear, but preconceptions nonetheless pose dangers. The first day of camp, I stole the director for a few minutes. I said that Martin had some previous language delays, and because he is still catching up, he struggles with social interactions. He wouldn’t give them any trouble about participating, I explained, but we do worry about bullying and hope they will keep an eye out for that.

“That will be no problem,” the director replied. “We’ve had all kinds of kids at camp. Even kids with autism.”

“Oh!” I said. “If you’ve had kids with autism, you can certainly handle Martin. It’s nothing like that.”

Actualización VI de Nicaragua: Un Projecto Comunidad

Posted on by findingmykid
1

We’ve returned, reluctantly, to the States, and I’ve got some time to reflect on the Nicaraguan experience.

I think one reason that Martin felt so at home in Nicaragua—one reason that we felt so at home in Nicaragua—was that Martin seemed to become almost a community project, among both the ex-pats and the Nicaraguans with whom we interacted.

Martin loves to zip-line. We had two adventure parks near us. The first park created a “good-customer discount” for Martin: As long as someone accompanied him, Martin participated for free. The second park held a staff meeting and decided that because Martin is un niño nervioso—an “anxious boy”—he should receive 30% off all adventures, so he could build his confidence through outdoor activity. Martin’s favorite seafood restaurant served octopus with dairy-based garlic sauce. Martin loved the octopus, so the kitchen workers took it upon themselves to create an oil-based garlic sauce just for him. Waiters, gatekeepers, and cuidadors went out of their way to greet him. A local surf shop, owned by a German national, outfitted Martin with a collection of its beach wear, for free, on the basis that having a cool look would help Martin feel good about himself. We didn’t ask for these accommodations. They just happened, because, apparently, un niño nervioso needs a boost now and then.

And in Nicaragua there was never a question about whether Martin could accomplish something, just how to go about it best. I volunteered to send Samara to day camp with Martin, as a sort of helper/aide. Not necessary, the directors told me the first week; he was doing fine independently, they said, and Samara would coddle him too much in front of the other kids. “Would you let me teach your son to surf?” asked one of my coaches at the local gym, also a surf instructor. “If he can ski and skate, I know he can surf.” The third-and-fourth-grade teacher at the international school encouraged me to consider enrolling Martin there. She said, “My background is in special education. I know he’d fit right in, in my classroom.”

Once, when we were out to dinner, Martin asked permission to leave our table and eat with a half-Nicaraguan friend, Alejandro, and Alejandro’s American grandfather. (Martin had his iPad, and the boys decided to play Minecraft together.) The next day I encountered the grandfather and struck up a conversation. “You might have noticed Martin has some social challenges. I hope he and Alejandro weren’t too much of a handful at dinner.” The grandfather responded, “Oh, really? Funny. After your family left the restaurant, I said to Alejandro, ‘Did you see how Martin always extends his hand and introduces himself? You should learn to do that’.”

I was tickled pink.

Not that everything Nicaraguan was perfect. The day camp, with its week-to-week enrollment, had regular turnover, and the second week Martin experienced some pretty intense bullying. I witnessed it myself: At drop-off one morning, at the local park, Martin said hello to a group of five kids. One by one, those kids picked up their backpacks and moved to another area, without acknowledging Martin. Appearing confused, Martin followed them and said hello again. The oldest boy, without looking at Martin, said, “I see something really interesting over there. It’s a tree. I’m going to see the tree,” and left. The other kids promptly followed. Martin, realizing he’d been rejected, climbed onto a swing, alone. When two pick-ups arrived to shuttle the kids to the camp, these kids piled into one truck’s bed—safety advocates, I know! but when in Rome . . .—then blocked Martin from getting in, telling him that all the spots were reserved for their friends. I was standing nearby, so I said, “I don’t think you can reserve the spots. Let Martin sit.” A girl in the bullying group, about seven years old, looked me directly in the eye and said, “No, we can do whatever we want.” (I was taken aback. I don’t know any child who would speak that way to an adult, much less an adult who is a stranger to her! This girl, dear readers, was simply a brat.) I contacted the camp directors the same morning, and fortunately, they jumped on the situation immediately. By Friday afternoon, Martin was calling the bullying group’s ringleader “a kid who wasn’t kind to me at the beginning of the week but then got nicer.”

Taekwondo didn’t work out so well, either. Martin does taekwondo in the States. It’s a gentle program, with three or four instructors for the 45-minute classes and a series of ten belts, which are earned for learning sequences of kicks and punches. Taekwondo in Nicaragua, at the only dojang in town, was serious business: two-hour classes, one master for more than twenty students, four belts awarded at the master’s discretion, and sparring for everyone. Martin couldn’t follow and shied from kicking and being kicked; he’s not ready to spar. The master didn’t seem to understand when I explained Martin’s challenges and often seemed annoyed or frustrated with Martin. Halfway through the summer, when Martin asked if he could “maybe stop doing taekwondo until we get home,” I agreed.

Fortunately, isolated bullying and advanced taekwondo didn’t ruin an amazing summer, or the perception that our Nicaraguan community was rooting for Martin’s success. In the States, I have that perception from the autism-recovery community—but not much more widely.

Martin didn’t accept the offer for surf lessons, I should mention. He says he’ll try surfing next summer. Because we’re going back to Nicaragua next summer. Was there any doubt?

Who Gets to Join This Fancy Club?

Posted on by findingmykid
Reply

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.