Saturday, April 30, 2011

Learning to Drive, Part 1

The Japanese mountain village I called home for the three years after college had no train. Take a minute to think about this. There was no train. In fact, the closest train station was 45 minutes by car, making it perhaps as far away from a train as one could get in an island country the size of California that relies on trains as a major means of transportation. There was also no grocery store to speak of. Sure, there was the family-run affair down one of the back streets, but they sold things that had expired the previous decade. And half-way through my time there, the village did get a combination convenience store/farmer's market, but it was literally the size of my bedroom back home. The bank closed at 3 p.m. daily (in other words, before I got off work)and was barely big enough to hold the two tellers who worked there. The public bus that ran through town made its first pick-up at 7:30 in the morning and its last departure for the "big city" at 4:30 in the afternoon. This meant if I wanted to go anywhere by bus, then I needed to get to the bus stop by 4:30 p.m. (just about the time I got off work). It also meant that I wouldn't be coming home until at least 7:30 the next morning.

I taught at the two junior highs in this small town (or more accurately, collection of villages and hamlets). There were two junior highs not because the population was big enough to support two of them, but because the rugged mountain terrain and narrow mountain roads made it difficult for all the kids to get to a central location. So, when I was there, the larger school had 123 kids in grades 7-9, and the smaller school had just 57 kids, most of whom were related and a good 1/2 of whom had the same last name, Kamura.

Now, if you know anything about Japan, you know that people go by their last names. Junior high teachers call on their students by last name. But if I said "Kamura-kun" during class, half of the kids would look up at me. It was unnerving. So, I had to learn their first names. This might not sound so difficult, and usually I am good with names, but this was a classroom full of kids who had on the exact same clothes (navy uniforms), the exact same color hair (and eyes) with the exact same hair cuts (buzz cuts for the boys and above-the-collar hair for the girls), who were mostly related and from the same small town. None of my name-memorization techniques seemed to work with this group. They wore name tags, so once I figured out the kanji (Chinese characters) for their names, I was good. At least on the half that didn't have the same last name. Eventually, I learned all the students' names and even figured out how most of them were related, but it wasn't easy.

This second school was 20 minutes up the mountain from the larger school, which was directly across the street from my house. Because I wasn't permitted to own or drive a car (by my Board of Ed--more about this below), I had to take the bus to school. Since the bus ran so infrequently, this meant that I got to work late and had to leave early. Worse, though, was the fact that the road between the two schools was a one-lane mountain pass. It was also the only road between the hamlets to the north and the "center" of town where I lived. This made the road absolutely harrowing during "rush hour," particularly if you are making the trip on a city bus. Question: What happens when one vehicle fails to yield for another and enters the one-lane stretch of road anyway? Answer: Someone gets to back up. And since there was more traffic headed down the mountain to "town" than there was headed up the mountain to my tiny junior high school, I spent many a pleasurable moments on the practically empty bus, whiten-fists clenched to the seat in front of me as we backed back down the mountain to let the other folks through. It only took a couple of trips to convince me that I would die on that bus sooner than I would kill myself driving up and down the mountain. I had to get a car.

The first month or so after I moved into the village (during the summer holiday between semesters), I was required to sit at my desk in the "town" Board of Ed from 8 to 4:30 every day. Eight hours a day with literally nothing to do. "Study Japanese," they told me. I'd already studied Japanese for several years in college, and reading through those textbooks day after day was not helping me get any better at using it. While I didn't learn much Japanese while sitting there day after day, I did learn two important lessons about how to work the system in small town Japan.

Lesson #1: don't piss people off. This was an easy lesson for me because apparently my "predecessor" (the foreigner who sat at that desk and taught those classes and lived in that apartment before me, who, by the way, even though she was Scottish, short and blonde-haired apparently looked just like me, a taller, dark-haired American)was very good at pissing people off. In fact, from what I could gather, most of what she did made people mad. Why? Because she did what she darn well pleased regardless of what she was asked or told to do. (Note to any of you out there reading this who might one day find yourself teaching in a small village on the JET program. Don't do this. It makes life hell for the one who comes after you). I heard a lot about my predecessor, and it was usually in the context of me being told I could not do something (like own or drive my own car) because she had done it and it had caused a lot of trouble. Amazing how one short Scottish woman with limited Japanese language skills could cause so much trouble, but she could, and she did.

Lesson #2: always let the superintendent think that things are his idea. Even though I had absolutely nothing to do the first five weeks I was in the village, the superintendent would not let me leave my desk. I wasn't allowed to go out and acquaint myself with my surroundings, shop for things I needed, or even visit the schools where I would be teaching (thanks predecessor for making life so fun). He did want me to learn about Japan and to speak better Japanese, though, and it was this second point that turned out to be my salvation.

See, no one could teach Japanese in my tiny town,and my language skills were good enough that I tested into the advanced class being offered in the "big city." Problem was, it didn't end until 8 p.m. This meant I couldn't get there and back without a car. I knew they wouldn't tell me not to take the class, so I asked if someone could pick me up every week (see how I didn't ask if I could get a car? Clever, right?). It only took a week (a single round trip to the city) for the person assigned to pick me up to convince the superintendent that I should have a car. One week! I was starting to figure things out.

Next time: How to buy a car in a really small town when you don't really speak the language.

**The picture at the top is not the best quality, but it IS the actual village where I lived...

Things Fall Apart

And just like that, things fall apart.

Not sure what minor shift happened in the universe, but suddenly life has gotten a lot more challenging. Sure, dissertation draft deadlines and final paper grading are the bane of my existence here in late April, but they are pretty much par for the course. And while being in the last month of pregnancy is no fun (Did I mention how much I hate being pregnant? If not, I'm doing a better job censoring myself than I realized), I pretty much expected to be uncomfortable, sleepless, and grumpy at this point.

What I didn't expect was for Sky to enter a different dimension. This is about day 12 into our Sky paradigm shift. Suddenly he walks around the house yelling unintelligibly at the top of his lungs. Suddenly he is repeating words he is not allowed to use in rapid succession. Suddenly he is melting down fairly regularly. Suddenly he's getting into trouble at school. It's like we are back at square one, only the problems are different somehow.

We can't figure out what in the world led to it. Easter? The substitute teacher he's had for two weeks? The change in seasons? Who knows? And, it really doesn't matter what caused the shift. We just need to figure out how to get back to where we were.

Fortunately, despite the fact that the public school system still offers us little support (I know what I'm doing this summer--besides having a baby that is), his private school is awesome. All of the teachers who see him throughout the day, including the principal, are not only aware of what is up with him, but they are all also working together to actively implement interventions meant to help him maintain his equilibrium and make it through the day successfully.

Honestly, I think their response time has been better than mine. I'm not sure what else we can be doing that we weren't doing already, but I'm sure we will figure it out. I am sure we have been in this place before and figured it out before. The harder thing is figuring out how not to be freaked out by how easily things seem to fall apart.

Sunday, April 24, 2011

You Want to Do WHAT with the Eggs?

Holiday celebrations in cross-cultural families are always a tad challenging. Due to time constraints alone, it's not feasible to celebrate all of the holidays in both Japan and the US. So, over the years, we have come up with a repertoire of the holidays we do celebrate (though the approach to them is often different depending on which country we are in and how much effort it will take to pull off some semblance of the holiday at hand).

There are a handful of holidays that really don't translate from one culture to the next. Easter has been one of those holidays that we only celebrate in the US. The only holiday more difficult to execute in Japan is Thanksgiving. First of all,it happens on a Thursday, in the middle of the work week. Next,the story of the Pilgrims and Indians and the first Thanksgiving seems especially quaint in a country with a prehistory that reaches back 10000 years and a civilized society that is way older than the United States.' Most importantly, however, is the fact it is nearly impossible to buy a turkey and cranberry sauce. Plus, there is no American football on TV.

But back to Easter...

When we are in Japan, we go to church and mark the occasion, but there are no Easter dresses or egg casseroles. It is next to impossible to procure Easter baskets and Easter candy in Japan. I don't think I have ever seen jelly beans for sale there (except for the occasional Jelly Belly at an import gourmet market). And so it is that this year, nearly 6 1/2 years after our first child was born, we found ourselves decorating Easter eggs for the first time. I'm sure some of you skeptics assume we haven't dyed eggs up until now because we hate stains on the carpet. You're right. We do hate stains on the carpet, but actually, since this was the first Easter we spent in the US when our kids could actually comprehend this thing called Easter, we decided to take the plunge and dye some eggs.

When I say that "we" decided to dye eggs, what I mean is that I decided to do it and Ren decided to look at me incredulously for a very long time. I explained the process, and Ren's response was: "You want to do what to the eggs?" So I explained it again. First we boil the eggs, then we dye them different colors. After that, we hide them around the house (leaving them unrefrigerated all night). Then the kids find them and we put them back in the refrigerator until we eat them. My re-explanation had little impact on the puzzled look on his face. But I decided to forge ahead anyway.

The kids loved experimenting with colors and making a mess, and Ren managed to create a color with his egg that I'd never seen before. Sky and Pink P loved hunting for the eggs after the Easter Bunny hid them (why is it that hunting for real eggs is even more thrilling than hunting for candy-filled plastic ones?) And, as could have been predicted, they were not terribly impressed when it came time to eat their eggs. In the end, our colorful creations were left behind at Grandma's so she could use them to make psychedelic deviled eggs for the church pitch-in.

It's a weird thing not to have built-in connections with one's spouse when it comes to holiday traditions. I imagine some would say we are lucky to avoid the conflicts that arise when two people with strong family traditions have to work to create a new tradition of their own. And it's true that we are lucky to avoid the annual question of with whom we will spend our holidays. But the fact is almost every holiday one of us is responsible for remembering how we did things when we were young and for recreating a similar experience for our own kids while the other looks on incredulously. It's a lot like trying to recall idioms or remembering to teach them all the appropriate nursery rhymes and fairy tales. (Check out that post here.) Some of it gets lost in translation.

Thursday, April 21, 2011

The Things We Don't Do Anymore

At some point, when you have a kid on the autism spectrum, you realize you don't parent like your friends. Usually, it's at about the same time you find yourself saying, "It shouldn't be this hard. What am I doing wrong?" It's not surprising you find yourself saying this when your ASD kid is, say, doing that exact same thing you asked him not to do a thousand times. And I mean, literally 1000 times. See, this is before you get the diagnosis and you don't realize a) he probably hasn't heard you the other 999 times, and b) even if he did, he didn't generalize the suggestion to suit any other situation but one exactly like the situation in which you made the suggestion previously. Also before you get the diagnosis, and when you are still sure you are the world's worst parent, you find yourself wondering why you are having a knock-down, all-out shouting match with your 4 year-old over the fact he can't have apple juice with his dinner. After all, you have never let him have apple juice with dinner, ever, and no one made even the slightest suggestion to indicate the rule would suddenly change, but there you find yourself, arguing about an idea that has popped into his head for no apparent reason. And you can't back down because everyone knows that parents who give into tantrums just get more tantrums in return. So you stand your ground despite the fact that you're pretty sure not giving in to tantrums has done absolutely no good up to this point.

Somewhere along the way, you also realize how many things you have stopped doing, and you wonder if you would still be doing them if your kid was different somehow. And this depresses you because you think you should be a better parent than that, that you should be able to take your kid out in public and do things with him you always thought you would do with him. (Even as you know that you can't or at least that you haven't been able to do any of those things you stopped doing with any degree of success.) And the weird thing is that you don't necessarily consciously stop doing things. It just becomes easier not to do them. Things like:

* After school sports: team sports = your child running around wildly (and usually off field)

* Trips to the grocery store with kids in tow: face it, this is hard for any parent; imagine it with a kid who has sensory-overload issues

* Eating out: new environment=loss of inside voice and inability to follow simple instructions

* Casual play dates: "Yes, mother of other child, I have taught my child it's not nice to hit, but I didn't know your kid was going to start play fighting with him and didn't have a chance to explain to him the distinction between play hitting and real hitting." (He doesn't do make believe well.)

* Watching TV on school nights: who knew PBS could be so stimulating?

* Staying up past bed time: less than 12 hours of sleep = exponentially more meltdowns the next day

* Spontaneous anything

Once you get the diagnosis, everything makes sense, at least to you and to those who know and care about your kid. But it doesn't help stave off the judgment of hundreds of strangers, not to mention the moms of kids in the same class as your kid, or even some of your distant relatives. After all, he looks normal enough. Why can't you just control him?

And as a mom to one kid who is on the spectrum and one kid who isn't, you constantly have to ask yourself whether you are living right by each of those kids. And you have to cut yourself just a little bit of slack because you know that just because you can't do these things today, doesn't mean you won't be able to do them tomorrow. Sure, there will be new battles tomorrow, but what you don't know doesn't always hurt you.

Wednesday, April 20, 2011

The Things You Can (and Can't) Carry with You

During the 18 months we lived in Tokyo, Ren liked to go running late at night. Nowhere else in the world, he argued, could you get all of the sites and sounds of a big city at night without a fear of being mugged. Over the course of our time there, he literally covered the entire Tokyo metropolitan area on foot, eventually running more than 20 miles at a stretch and not returning home until midnight or later.

I loved these quiet nights at home with two sleeping small ones. In fact, I made a lot of progress on my dissertation the nights Ren went running...that is until at some point, I invariably began to wonder what I would do if there was a major earthquake right then. Like I've mentioned in previous posts, anyone who lives in Japan for an extended period of time has been conditioned to expect that a strong quake could occur any time.

At first, my anxiety was just about whether I would be able to singlehandedly strong arm two floppy-bodied sleeping kids down three flights of concrete steps. Then we visited the local disaster preparedness center where we were able to take a ride (for lack of a better way to put it) in their earthquake simulator. We did this with our small kids (Sky was 4 and Pink P 1); after all, they needed to have a sense of what could happen as much as we did.

The simulator not only produced shakes of varying magnitudes, all the way up to a 7 (unless you begged them to stop before getting there), it also reproduced actual earthquakes. The Great Hanshin Earthquake (in Kobe in 1995) was a 6.8 and lasted for 20 seconds, so the simulator not only reproduced 6.8 shaking, but it shook in the same way that the ground shook for that earthquake. Same thing with the 1923 Great Kanto Earthquake, which lasted much longer and reached a magnitude of 7.9.

The simulator only reproduced quakes a fraction of the length of the actual earthquakes, but it was more than enough time to make me realize that I would not be carrying any sleeping kids down three flights of concrete steps when the big one hit. In fact, I would probably not even be standing up. Sustained shaking of that force not only makes it hard to remain vertical and walk, it also makes you feel like you are losing your mind. As if your senses, along with your brain, are being completely dislodged. This is one of the reasons the March 11 quake is so absolutely unfathomable to me. Sustained shaking (some say it lasted at least 5 minutes) at 9.0 or stronger must have been enough to shake everyone in the quake zone from their foundations, literally and figuratively. Even without the tsunami, it was bad.

The other unforgettable aspect of that visit to the disaster preparedness center was the map. See that map at the top of this post? That's an earthquake prediction map which charts the possibility of a major (7.0 or greater) quake hitting in the next 30 years. See that menacing little blood-red spot up on the northeast coast? That's about where the 3/11 quake hit. (Blood red = bad, in case you're wondering). This map doesn't have actual percentages posted, but the one I saw did. And the prediction back in 2009 was that there was a 99% chance of a major quake hitting near that tiny blood-red spot in the next 30 years. And Tokyo was sitting at about 70% chance. Back in 2009, this was scary enough. Now that we know a "major" quake could be a mag 9.0, it's absolutely petrifying. Back in 2009, I could tell myself that the chances were that there wouldn't be a quake while I was there and that even if there was, Japan was more than prepared. In April 2011, I have a harder time convincing myself.

So last night, when a second round of tornadoes shot across the United States, I found it was a lot harder than it used to be to convince myself that the chances were minuscule for a tornado making its way to my little house in my little town. In fact, I found myself compelled to move my two sleeping children to the basement (and to keep a copy of my dissertation on a flash drive around my neck) just in case. My friends in Japan talk about getting used to a "new normal," and they have a heck of a lot more to deal with than I do here in the rural US. Still, it makes me wonder if any of us will ever quite be the same.

Monday, April 18, 2011

Diet Coke is Bad for Us

The first time I lived in Japan, I was just out of college and working as an assistant English teacher in a tiny hamlet in the mountains of northern Kyushu. On my first day in this small town, I managed to cut my toe on my suitcase. After all, one only cuts one's toe on one's suitcase when unable to speak the language and unsure of where to buy a band-aid. With the help of an extremely generous neighbor, I was eventually able to procure a band-aid, but only after we made our way to the only store in town that sold band-aids and stood out front of the tightly-shuttered building, yelling "Gomen kudasai" (Excuse me) for a good ten minutes before a man dressed only in his underwear opened shop and sold me what I needed.

Thus began a three-year relationship with a town that didn't quite know what to do with me.

As the only foreigner living within a 40-mile radius, I experienced a certain degree of, shall we say, "fame" that I would have preferred to avoid. The local school children not only knew where I shopped (not hard to figure out since there was only one store in town that stocked things that were not three years past their expiration date), they also knew what I bought and how often. The older ladies in my neighborhood kept a close eye on my laundry (which was usually left out hanging too long) and my yard (which was scandalously overgrown and full of weeds)-- who knew you were supposed to "cut" your grass by hand? When anyone had the audacity to leave her trash at the neighborhood collection point WITHOUT writing her name on it, the bag would end up on my front porch, as would any piece of mail with an address written in English, no matter who the intended recipient. And, don't even ask what it was like to begin dating the man I would eventually marry while living there (though it is a pretty good story)!

Don't get me wrong, I grew to love this little village just as they grew to give me a little more privacy, but the process wasn't without its growing pains. One morning when I got to school, the junior high where I taught was abuzz with the latest gossip about me: I drank a lot of Diet Coke. In fact, I drank enough to fill a medium-sized plastic recycling bag. Gasp! Oh the horror! It wasn't like my recyclables were full of empty fifths of whisky or liter bottles for beer. There were no Playgirl magazines or used condoms in my trash (which ALWAYS had to be disposed of in specially-purchased, see-through plastic bags). No, what I had to throw away was about a month's worth of Diet Coke cans. And, it was something I would never live down. Why? Because Diet Coke is bad for us, and really, what more is there to say?

Cartoon taken from:

Friday, April 15, 2011

Why My Kid Doesn't Know His Nursery Rhymes and Yours Does

“Your son doesn’t know his nursery rhymes,” someone pointed out to me recently.

One of the things I have noticed after spending half of my adult life living overseas and speaking a foreign language is that it’s the simple things that leave you first. I’ve long had this theory that there is only so much practical knowledge your brain can hold at any given moment, so to make room for new knowledge, the brain has to purge itself of things you no longer use on a regular basis. The first to go is idioms. If you want to experience the true joy of the mixed metaphor, speak to a native English speaker who has been living in Japan and speaking Japanese for a couple of years. A friend said to me once, “He’s the bedpost of the church.” Now, I knew this was wrong, but only peripherally. And I couldn’t for the life of me figure out the correct idiom. At least not right away. I eventually figured out that she meant to call him the “pillar” of the church, not the “bed post,” but in my mind, both were sturdy, supportive pieces of wood, so same difference.

Since becoming a two-culture mom, I have similar problems with the loss of other basic skills—my parenting skills. After Sky was born and before we moved back to Japan for 18 months, I essentially had my act together as a mom. I knew how to get involved in various parent-child groups, knew which of the various baby products we needed and where to get them, and had a sense of what I should be teaching him when. He knew the standard fairy tales, nursery rhymes, and lullabies. Aside from being bilingual and overly rambunctious, he was basically socialized in the same way as his peers.

Then we moved to Japan. At the time, Sky was 3 and Pink P a newborn. Suddenly, I found myself being a first-time parent all over again. None of my common sense as an American mom applied in Japan. This was made clear to me early and often. On February 1st, when we got off the airport bus in snowy Tokyo after 24 hours of travel, I realized, for the first time, that I didn’t have a coat for Pink P. Why? Because until that very moment, I had always bundled my babies in infant carriers snuggled with tiny blankets and covered with a fleece car seat cover. There was never a need for a coat unless I wanted to take them sledding, which I didn’t plan to do in Tokyo. Bad mom. Very bad mom.

This sensation recurred almost continuously the entire first year of Pink P’s life. I missed her 6 month check-up because I didn’t realize that the check-up was not the same thing as her immunization visit to the local health department. She got her shots, but nothing else—at least not until I realized my mistake when she was 9 months old.

And the shot schedule was totally different. Not only that, but the way shots were administered was different, too. First, we all appeared on the assigned day, and by all, I mean a hundred of us with babies born within a month or two of each other. Then we filled out the necessary forms before going on to step one: undress baby. Step two, temperature and general health assessment. Step three, get immunized. (The first time we did this, it was for the BCG vaccination. Our pediatrician in the US told us to keep Pink P on the Japanese immunization schedule, so we did, but BCG was pretty horrible. See the picture above? See how many needles that has?) Step four, sit together with our irritated babies and wait for 20 minutes to make sure they don’t have a negative reaction to the vaccine. It wasn’t until step four that any of the moms even looked at each other. I suppose they were all dreading the shot and worrying that their babies would freak out (and why wouldn’t they?). I had no idea what was coming, so no time to worry. And Pink P didn’t even flinch when they gave her that monster.

When we transitioned to solid foods, more dilemmas. Where did people get their baby food? Surely they didn’t pay nearly two dollars a jar for it. It took time, but I eventually figured out that most people made their baby food. Once I figured out I was supposed to make it, it took even longer to figure out what people put in their homemade baby food. For starters, daikon radishes.

Things weren’t much better with Sky’s transition into preschool (which I have already described here). Adjusting to the expectations there was rough. In order to make sure Sky was essentially socialized the same as his Japanese peers, we had to give him a crash course in various children’s songs, morning greetings, and basic Japanese fairy tales. There was very little overlap with what he knew or what he was expected to do in the US. What’s more, he was learning all of this in his second (now primary) language.

Eventually, we all got properly socialized to Japanese child-rearing and schooling. That’s about the time my research stint ended in Japan and we moved back to the US where we had to unlearn and relearn everything all over again. Apparently, I forgot a couple of nursery rhymes in the process.

Random Advice

When writing a dissertation, it is better to either finish quickly (usually impossible) or to have a superior filing system which does not rely on memory alone. Since I started writing my dissertation, I have 1) added 1 1/2 children to my life, 2) entered the bewildering world of ASD and its various interventions, 3) moved 6 times, including two long stints in Japan, 4) seen both of my parents through various medical procedures, 5) started blogging, and 6) consumed more than a thousand cans of Coke Zero. I can't even remember what I had for breakfast this morning, much less where I placed that 2-page article on so-and-so's view of history. And the thing is that I need that article right now to move one sentence further along on my 200+ page dissertation. I also can't find my strand of extremely valuable pearls. But I don't need those right now, so who cares?

Whenever possible, avoid going on the kindergarten field trip when 8 months pregnant, especially if the field trip requires three hours on a school bus full of small children singing "Jingle Bells" (out of season) most of the way. I had every intention of riding with one of the other mothers, but when Sky saw that some of the moms were riding on the bus, he absolutely refused to get on without me. It did not help for other moms to point out that they were worried that the excessive bumpiness of the ride (do school buses NOT have shock absorbers?) might put me into early labor. Nor did it help, really, that Sky and I were in a seat surrounded by parentless boys whose moms had decided to drive.

Actually, I can't think of a third piece of advice right now...Plus, I just remembered that I logged on to my computer in order to search for the missing article.

Sunday, April 10, 2011

Accidental Advocate

I have a knack for writing letters of complaint. The letters I have written have resulted in refunds, upgrades, numerous free airplane tickets, and even three new watches. In other words, I am willing to fight for what I think is right, and I am usually pretty persuasive in the process.

But, I don't understand why it is that these days, I have to fight for just about everything. When my Comcast bill comes, it is inevitably wrong, or the rates have gone up, or a service I never requested has been added. So, I spend minutes and sometimes even hours on the phone trying to get my bill back down to where it should be.

When Aetna sends EOBs for someone's doctor's visit, 9 times out of 10, they are refusing to pay because either the doctor is suddenly out-of-network, or my policy is no longer valid, or the treatment isn't covered. So, I spend minutes and then hours talking to customer service pointing out that, no, we have not changed doctors or policies or treatments, and yes, they are all covered. The year Ren had eye surgery, it took 12 months of semi-monthly calls for me to get the insurance company to pay. Twelve months!

Most people don't have the time or the patience for this. I don't have the time or patience for it, and after years of being a constant advocate in the name of these and many more unnecessary "causes," I'm tired.

But now, I find myself needing to advocate more than ever for my kid who's "on the spectrum" and in need of and entitled to support. The going has been tough. Nothing about the process is transparent, and it turns out that government agencies that are given funds to help kids like mine are not necessarily willing to help. When I find myself sitting in a meeting with school special ed representatives who tell me that Sky is doing too well academically to qualify for support, and that "the school system might not even consider him to be autistic," I don't even know what to say. He has a medical diagnosis based on numerous hours of tests and the expertise of a team of specialists at the best children's hospital in the state, but these school administrators are not willing to spend enough time with him in the classroom to know which kid he is, much less whether he is autistic or not.

Slowly but surely, we are getting the services we need, but none of them are coming from public school funding. How do other parents deal with these issues? Why should we have to fight so hard to get support for something that is hard enough already? When did we all become accidental advocates?

For more of the story, see: Accidental Advocate Redux, Is it Okay to Laugh Now?, and The Best Offense is a Good Defense

Wednesday, April 6, 2011

Star Wars Gets in Line

Okay, so I have always heard that kids on the spectrum like to put things in order. Various doctors and therapists have asked me if Sky did this--either now or when he was little. And while he like trains and building train sets, and while he loves Legos, I really never realized he lined things up. I mean, he never put the trains in line. He never put his Hot Wheels in line. He was particular about how things were set up, but maybe I never realized how much. Then today, when he was at his OT appointment, Sky was playing with his Lego mini-figures. He had them grouped and set up on the table. And Jeremy (his therapist) nonchalantly rearranged them. Sky promptly put them back in the same order. Then Jeremy had him turn his back from the table and asked him to tell him the order. Same order again. And as I watched him arrange the figures in the same order over and again, I realized that Sky was putting them in order of when he got them. Turns out he not only remembers exactly which figures came with which set, but he also remembers when he got them, who gave them to him, and how he felt when he received them. I also realized I need to pay closer attention. I mean, he's six, and I have never noticed him organizing things. Maybe it's the first time he's done it, but I somehow doubt it! One thing I've noticed in the three months since his diagnosis is that it turns out a lot of what Sky does is a result of his autism. This doesn't mean it's bad or needs to be corrected, but figuring out what he's doing and why he does it can't hurt either!

Maybe my problem is that I take these things too literally. Since Sky didn't put the Lego characters in a straight line, I didn't think he was obsessively organizing them. He's probably been doing equally subtle organization his entire life, and I have just not picked up on it. This reminds me of when Ren's retina detached(long story). The eye doctor told us it might, but when it actually started to happen--Ren described it as ink slowly filling in from the bottom of his eye. Since all the information I had read about detached retinas described the process as a black curtain falling over the eye, being literal, I assumed that a) it would happen from the top down, and b) it would happen quickly. Talk about not being able to generalize concepts! Fortunately, we called the doctor anyway and after emergency surgery and several weeks sleeping sitting up with an oxygen bubble that resembled Mickey Mouse floating in his eye, Ren was able to see again. It's a good thing I am not a doctor.

My Little Stowaway

The good thing about being 7 months pregnant during a 10-hour flight to Hawaii is that I didn't have much time to sit still (and thereby increase my already elevated risk for deep vein thrombosis--something my doctor was sure to point out to me when I told him I was off on the unavoidable trip for work). In fact, thanks to my little stowaway, who seemed to like flying so much he was joyously dancing on my bladder the whole time, I was up about every 15 minutes the entire flight. And as I walked back and forth from my seat to the tiny bathroom, a bathroom that seemed A LOT smaller to my 7-month-pregnant self, I realized that I am still a bit in denial about the whole thing.

We learned about our little stowaway about the same time we learned about Sky's diagnosis. This was also the same week we put Pink P in preschool and I got feedback from my dissertation advisor, so it was a great week all in all. (And by great, I mean extremely stressful). We were sure we would be having two kids--after all, I'm pretty sure these two equal six "normal" kids (as if there is such a thing as a normal kid). Originally, we thought we might want to have three--there IS strength in numbers--but after our trip to Japan last summer, we had both decided that trekking half-way around the world with two small children was a) expensive, and b) really stressful when trying to get through Japan's (and one of the world's) largest train station(s) without losing one or both of the kids.

Funny how things don't usually go as planned. But I guess, I've already learned that most of the unexpected things in my life have also turned out to be some of the best. So, here's to a little more loss of control and the impending arrival of our little stowaway!