Tuesday, November 24, 2015

American Autistic in South Korea

We've all heard of the movie, American Werewolf in London, right?



Well, have you heard my family's story? It's called American Autistic in South Korea. And is way more realistic. Mostly because it's happening every day right here in Songdo.

So here's the scoop:

In case you're late to the game, my son, Sam, who is 7, is on the Autism Spectrum. He was diagnosed just before his third birthday, after losing his language skills and generally just ceasing to function in the blink of an eye. No, really. One day my husband and I noticed him sitting outside, spinning the wheels on his Lightening McQueen car unwaveringly. It lasted for a ridiculous amount of time, before we looked at each other and said, "Hey, has Sam talked to you lately?" "No. What about you?" "No." *silence* "So when was the last time he spoke?" "I don't know. I mean, he cries and stuff, but..." *silence* "Should we be worried?"

Three year old Sam dressed at Buzz Lightyear. It took over an hour of screaming for him to let me put on the hood long enough to snap a picture, and even now when he sees the picture he shudders, still remembering how much he didn't want to wear that hood.


6 months, countless tests, and three two hour long assessments done by the top psychologists and Autism specialists in our city, and whammo. A life changing diagnosis.

For the most part we've survived. To be honest, in the beginning, it was hard to have hope. We mourned for the life our Sam might not have. For the life my husband and I knew we could potentially have (an adult child living with us forever.) And for the hardships our child would likely face. Because......well, if anyone tells you being Autistic isn't that hard deserves a punch in the face. Maybe twice.

It's not an easy life. Not one bit.

In the years since Sam's diagnosis, we've been thoroughly surprised by the progress our son has made. He regained his language skills. He is highly functional. Most people are unable to tell that he is (technically) different. Occasionally he still shows his diagnosis (easily excitable, strongly troubled by certain sounds, self imposed dietary restrictions, has an aversion to affection or undue attention, doesn't always speak clearly, trouble sitting still--though it begs to be mentioned that Sam hears everything, sees everything, and often remembers everything--we always forget not to underestimate his focus, despite his wiggling body.) But for the most part, Sam appears to be an average, if not quirky, seven year old boy.

The fact that many kids don't come back from that dark, closed off place he shut himself into when he was 2 and 1/2 is not lost on me. Not at all. We are grateful, endlessly grateful for early intervention. His occupational therapist brought him back to us. She's an angel. Truly.



When we were trying to decide whether or not my husband should accept his job offer in South Korea, one of the biggest factors was: could Sam function in a foreign country. Because if we're being honest, Koreans are not very accepting of kids with special needs. Not that they would be mean. They're not monsters. But there is still a stigma attached to parenting a child with special needs--as if the parent had done something wrong by producing a child who isn't perfect. We were warned that the Korean parents may not view Sam fairly because of his diagnosis, and that some parents may go so far as to discourage their "normal" kids from having friendships with our son.

The decision to move was agonizing. On top of the stresses of moving all of our children abroad, we had to really consider whether or not the move would be beneficial for our son who--simply put--doesn't fit in to the normal mold. In our opinion, he broke the mold. But we're biased. By Korean opinion, there is something "wrong" with Sam. And frankly, we weren't going to respond very well to that.

And so...we had meetings. Lots of them. Meetings to plan meetings. Meetings to meet the team, meetings to plan meetings to meet the team. We sent copies of Sam's IEP, and then spent the first few months of living here, insuring that everyone who worked with Sam had read it, and understood his peculiarities. We very prayerfully made the decision that moving Sam to the international school that our children attend was the absolute best choice for him--and so far, we've been pleased with our decision. We insured that while the staff at the school would know his diagnosis and special considerations, the parent population would not be privy to his official diagnosis. We tell certain people (usually fellow Americans,) but don't offer the information to the international crowd (i.e. non Americans) until we know that we can consider them "safe" and non-judgmental. We've found a handful.... kind people are everywhere. You just have to look harder for them. And watching people judge my son poorly is sort of a trigger for me.

Because, well, if judgement is passed on my kid....I get a little....



Yeah. You get it.

So that brings us to our current story: American Autistic in South Korea. 

Since moving here, I have seen children who exemplify certain telltale ASD behaviors that I (as a spectrum mother) notice as signs of spectrum disorders. I watch in silence, wondering why these parents don't seek the intervention that so graciously pulled Sam back from the ledge when he was little. I wonder why so many parents have an aversion to the dreaded "label," rather than getting their children the help they so clearly need. I wonder if I am the only mother--at least in South Korea--who realizes that an ASD diagnosis doesn't necessarily mean no future success. It means success will come, it will just come differently. I wish I had the guts to say this to all of these South Korean parents. But I don't. Because I am not qualified to make such diagnosis'. And my own son's diagnosis has to remain a secret.....

Living as an American in South Korea--especially an American with very little experience abroad--is difficult enough. Sam had to adjust to a new home. New scents. A new church. A new bed. A new city. New sounds. New routine. New friends. New teachers. New foods...

Adjusting to not having access to products and foods that we used on the regular in Washington state is difficult. This is fact. But asking a child on the spectrum to adjust to not having his regular products and foods is downright daunting. The kid lives on the following things:

1.) Crackers--preferably cheese its, but Ritz crackers or goldfish crackers, and sometimes plain old saltines will do in a pinch. (Korean crackers all have an element of sweet glaze on them. Even cheese crackers. It's repulsive. And Sam can smell a Korean cracker from ten feet away. Don't try to fool him. He'll catch you....and never let you forget it.)



2.) Milk/Chocolate milk.

3.) Yogurt...preferably Go-gurt, from America. (Korean yogurt is runny and watery. I'm not sure what makes it that way, but it's icky, and Sam hates it. He eats it, thank goodness, but he doesn't like to. And the first thing he asks for when we land in the USA is Go-gurt. Lots of it.)

4.) Hot dogs. (They have to be American style, i.e. not fancy--the cheaper the better--plain, boiled, not grilled, and cut into coins. Don't even talk about putting catsup on the plate. He will rebel.)



5.) Nutella toast on white bread--occasionally a half sandwich on white bread with nutella will be tolerated. But don't try mixing it with other stuff, and don't bother asking him to try a lunch meat sandwich or a cheese sandwich. Homie don't play that.)

6.) Watermelon, grapes, or apple slices.

7.) Fruit snacks.

8.) Chips. (Corn or potato only. Again, Korean chips have a sweet element that Sam calls "BS" on.)

9.) Nutri-grain bars. (Blueberry or strawberry only. And they dang sure as well better not be crumbled or broken. That's just blasphemous.)



10.) Carrot sticks.............sometimes.

11.) White, plain rice. (Don't put butter or pepper on it. Just don't.)

12.) Plain, cooked noodles. (He prefers spaghetti, but will settle on bowtie or spirally noodles. Don't sauce them, otherwise that's cause for rebellion.)

13.) Mac-and-cheese. (The kind out of a box. Preferably Velveeta Shells & Cheese. But Kraft will do in a pinch. Homemade mac-and-cheese is not acceptable, and is seen as a threat. A vicious, horrible threat.)



My son has an aversion to affection. He doesn't like being spontaneously hugged or kissed, so his new Korean friends are often rejected when they try to show him physical kindness. There are also times when Sam is particularly loud in class--as he gets excitable and tends to shriek and squack when things in his classroom get especially exciting. Sometimes he has to be reminded to hold his body still, and to quiet down. He is not always easy to understand, as he doesn't speak as clearly as other children--even children who speak English as a second language.

During Chuseok (the South Korean version of both Thanksgiving and Christmas rolled into one,) Sam's class dressed up in Handbok's, which are traditional Korean formal wear, to celebrate. Well, Sam refused to try one on, and some of the mother's of the Korean students took offense. They didn't understand why he wasn't willing to put on their beautiful costumes, and I wasn't willing to explain Sam's diagnosis to them.

Seriously...Korean children in Hanbok's is about the most precious thing I've ever seen. 


Sam requires patience and consideration in areas that seem simple to the average Korean. As a whole, South Korean students are exemplar. They take their academics very seriously. They consider algebra as exciting as American's consider Monday Night Football, and their children's ability to sit still, listen to instruction, follow instruction, print legibly, and ace their schoolwork is a sign of accomplishment for all of these moms. A sign of accomplishment for me is having Sam look me dead in the eye and grin. Hearing his spontaneous laughter when his brother makes him happy. Having him lean into my body for a typical Sam-hug, which usually involves his head and face--but no arms, without my having to beg him for it.

When these mom's look at Sam, I am pretty sure they don't see his disability, but I am not a stupid woman. I see that they notice something. I see that they can tell Sam is different. I can see them judging him, and it infuriates me...but I can't say much. Not without hurting Sam's chances at having friendships with the Korean students, and not without opening the floodgates for the parental population here to judge my son in ways that are heartbreakingly unfair.

My beautiful Sam on his first day of kindergarten. Notice the "Q" chew hanging around his neck. Lots of ASD kids seen input in untraditional ways. Sam used to chew through clothing. Just gnaw and gnaw until there were gaping holes in all his shirts. Those "Q's" saved us. (I'm very glad he outgrew the chewing phase.)


I will not do that.

So Sam exists.....he runs around this city, and rides his bikes along the sidewalks, squealing and yowling with joy when his body can't contain his excitement. He sits in the front rows on field trips--even though he cannot understand a word the tour guides are usually saying. He volunteers to participate with his tiny raised hand, every single time his teachers ask for assistance. He talks to people, even though his brain screams NO NO NO. He works ten times harder than every other student in his class. He exhausts himself conforming to a world that doesn't fit him, and in a country that is even less likely to cater to him. My little seven year old son is infinitely stronger than most adults I know, and I am in awe of him.

When we go places here, people touch his white-blonde hair. They marvel at his big, blue eyes, and his pale, freckled skin. They want to hug him and kiss him--especially the senior citizens. But Sam often insults them by his unwillingness to try their delicacies, or participate in their cultural activities. He is naturally aloof and sometimes rude...and our hands are tied. It's not smart to share with people why he is the way he is. If we do, we run the risk of him being labeled as a retard, and I just won't respond well to that at all. My son is not retarded. Just the use of that horrible word makes my skin crawl. He is more intelligent than most of the people I know, he just functions differently than most people. He is infinitely more amazing than anyone gives him credit for.



Remember the mother bear?

My Sam is such a joy. You see, my heart is split into seven separate but distinct pieces. One belongs to my mother, one to my adorably nerdy husband, one to my oldest teenager, one to my teen daughter, one to the daughter we lost, one to my precocious nine year old, and one...one belongs to my dear, sweet Sam. I know....with every ounce of my being...that we were brought to South Korea for a purpose. I'm not sure what that purpose is yet, but I know there is one. And I am extremely anxious to find out what the purpose in Sam's life will be. Why in the world God brought our little American Autistic to South Korea.

My Sam. <3


But I can't help thinking that South Korea may wind up being better for having housed him for three years.

xxoo
Brooke


1 comment:

  1. I can imagine that all those things about Sam are a challenge in many American towns too. People don't understand or accept different and blame the families. I'm glad to hear that Sam is continuing to find success. He's a doll and certainly is bright. I've seen children who could memorize entire seasons of the Muppett shows word for word. I wish you continued success on your travels. :)

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