Tuesday, May 31, 2011


Maybe it was the fact I have now made three requests to have Sky evaluated for special education services. Maybe it was the fact that I went to the meeting with one-week old baby and post-pregnancy pathetic expression in tow. Or maybe, just maybe, the community school folks are finally ready to do their job. Either way, I finally managed to get their consent to evaluate Sky. This seeming success is tempered by the fact that they now have fifty instructional days to comply (not to mention the fact it took an entire semester to get them to this point). Since there is only one more day left in this academic year, that means that they have essentially 10 weeks or one whole grading period of his first-grade year to get him evaluated. Sigh. Two steps forward, one step back. At this point, any forward motion is still motion, so I'll take it.

Once I've had a little more sleep and once I am no longer taking strong pain medication (darn C-section!), I will write about the colossal paradigm shift we are currently experiencing. For now, all I can say is that I am glad Stow manages to sleep for four hours straight at night (of course, now that I have written this, he will be up every hour on the hour tonight, especially since he is sleeping SO well today). Stay tuned...

Friday, May 20, 2011

Nesting Husbands and Foraging Three-year Olds







Tuesday, May 17, 2011

Accidental Advocate Redux









Saturday, May 14, 2011

Johnny Cash and Brushing--or--Things You Don't Think Will Work but Do

This week we are trying two new things. Both seemed far-fetched when I heard them, but what the heck.

Sky has been learning to identify things which overstimulate him and things which help calm him down. The goal, of course, is to help him learn to self-regulate. Figuring out what does and doesn't excite him is half the battle. The other half--figuring out when he is excited and employing a calming activity--is much harder. We're not even close on that front yet.

Sky's OT guy had him listen to all different kinds of music and identify which ones made him hyper and which ones calmed him down. Amazingly, Sky immediately knew which ones would and wouldn't get him excited and could generally explain why. Irregular beats and wide pitch range, bad. Regular rhythm with limited voice range, good. "That's why kids on the spectrum really like Johnny Cash," the OT guy tells me. Johnny Cash? I grew up listening to Johnny Cash (not by choice) and even own a Johnny Cash CD, for those moments when I am feeling particularly nostalgic for I don't know what. But, really? Johnny Cash?

Saturdays can be hard for Sky. Lack of school-day structure equals more meltdowns. So, today, I decided to try Johnny Cash. And I realized the whole darn album follows essentially the same beat. "I Walk the Line," "Folsom Prison Blues," "Ring of Fire," all the same bass line. And Sky loved it. We had no meltdowns and not even raised voices (other than Pink P's protests: "I don't like this. This isn't princess music!") while Johnny Cash was playing in the background. The downside? These songs require a lot of explanation. Did he just say mud, blood, and beer? Why is he singing about whiskey? Is there really a boy named Sue? Etc... The upside? Now Sky's grandpa has someone to share his taste in music.

Our other new routine is "brushing." It seems so simple and so far-fetched, and yet, it also seems to work amazingly well. Essentially, we take a soft-bristle brush (like the one pictured here), and we use it to brush gently but firmly along the arms, legs, back, feet, and neck. After that Sky gets joint compression by jumping up and down, doing wall presses, and having someone push down on his head and shoulders. The idea is that brushing helps him with sensory integration--it helps him find and keep his "just right" sense of touch and proprioception, which has meant a huge decrease in impulsive movement and bouncing off of things. Picture a human pinball. This is what Sky is like when his senses of touch and proprioception are out of whack. Now, picture a kid walking into the house, changing into his play clothes and playing calmly. This is Sky after "brushing" for less than a minute. It's weird that it works, but it works.

Friday, May 13, 2011


So, all in all, I have been pretty happy with Sky's school. Despite the fact the public school administration has been wholly unsupportive, the teachers and principal have seemed to work tirelessly to try different approaches to handling issues that arise with him in class. But recently, some things have been bugging me. It turns out that this is a school full of letter-writing parents. Apparently, when something happens at school that a parent is not happy with, they write a letter. Then, once the school gets the letter, they have no choice but to make a big deal out of whatever the letter says.

I know about this because twice in the last two weeks, Sky has been implicated in this kind of letter. In the first case, Sky had knocked down another child and caused her to skin her knees. I can understand a parent being upset by this. I can understand a parent talking to the teacher about this. But a formal letter of complaint? And, why didn't I hear about the incident until two days later--after the letter was sent to school? Worse, the incident happened in recess line, a time when Sky is particularly apt to get into trouble due to the chaos and lack of structure. A time when he was supposed to be closely supervised and directed lest he become out-of-sync and engage in proprioceptive-seeking behavior (i.e. pushing, crashing, pulling, etc. his classmates), which, by the way, is exactly what happened, though no parent is going to care why his/her child got pushed down, just that she did.

So anyway, two days after Sky knocks this girl down, I hear about it. I also hear about the big brouhaha that followed full of discussions about keeping hands to oneself and not bullying. Yeah, right, because Sky has complete control over these impulses, and he is totally tracking when you discipline him two days later. Needless to say, I had a few things to discuss with the school re. this process and felt we'd come to an understanding on how to handle "situations" in the future.

Then, a week later, I got called into another meeting with Sky's teachers. This time, it seems that a group of kids was using inappropriate language regarding certain parts of the body (Gasp! Kindergarten boys were talking about poopy and penises?). This situation turned out to be more ridiculous than the first. First of all, Sky didn't know any of that language until quite recently, and aside from Pink P's poopy talk, there is no way he would have picked it up at home. "Cha-chas"? I mean, really, do you suppose a Japanese-speaking father would adopt that term and use it in front of his kids? And, c'mon folks, my kid is autistic and socially delayed (to put it mildly). Anyway, Sky and I get called in to talk with the teachers and it becomes apparent that he is so peripheral to the "problem" that the conversation goes nowhere. Later, I learn that the parental letter that prompted this particular intervention was referring to things that happened months ago. Months ago!

The whole process seems ridiculous to me. I'm all for making sure kids are safe and respected at school. I am also for working to help kids understand when their behavior is inappropriate and even for punishing them when necessary. But, I'm not a big fan of delayed reactions based on parental complaints, as if the whole enterprise is purely economic and consumer driven (even if it is).

The result of these two "incidents" and how they were handled was to make Sky extremely anxious about school and worried that he would do something else to get into trouble. He doesn't misbehave intentionally or willfully, and it's his inability to control or predict his own behavior that is hardest for him.

After the second letter-induced conference, I decide to speak to the principal. Fortunately, she seems to get that it's a bad idea to revisit something that happened months before (particularly since her teachers have already discussed it endlessly with the kids and their parents). But then she lets slip a couple of bombs. First, they might not have enough kids next year for two classes. This means that all of them (80% boys, mind you) will be in one big class. Then she suggests that the reason some of the kids are leaving are because "the parents aren't happy with how things have gone in kindergarten this year." This piques my interest. I prod her, and she says, "There's also a boy who is manipulative, and one who doesn't handle his emotions well..." In other words, she is basically telling me that Sky is the reason they are losing families. The conversation goes downhill from there. It becomes increasingly clear that, despite the hours I have spent talking to them and educating them about Sky's condition, none of them have any idea what autism is and why they should be working with Sky in vastly different ways. Further, due to the lack of tuition-generated income, they can't afford any additional support for a kid like Sky.

Fortunately, just recently I seem to be making progress toward getting an IEP and professional support in a school setting (or at least, I am figuring out who to pressure in what ways to make sure that the community school administrators do their jobs), but nothing can be implemented until next year.

Unfortunately, now I need to decide if this is the school where Sky should be. And so, with two and a half weeks left in the school year, it's essentially back to square one.

Tuesday, May 10, 2011


I'll be the first to admit that I like gum. I have apparently always liked gum--at least that's what my older siblings tell me when they remind me that my nickname as a toddler was "Chief Gimme Gum." Apparently I walked around the house saying "Gimme gum! Gimme gum!" (Then again, maybe they made this story up. They have been known to torment me...) In high school, my gum habit got so bad I ended up with tendinitis in my jaw. Really.

These days I still keep gum around, though I don't chew it much any more, except for when we are on long trips and need something to help us stay awake. The main reason I have it is that Sky (like other kids on the spectrum) is easily calmed by gum. Apparently, the repetitive chewing motion is very soothing. In fact, Sky can be on the verge of a meltdown or about to turn into a human pinball, and if I give him a piece of gum, he will immediately pull himself together.

The problem is that when I give Sky gum, Pink P also wants a piece. She has not mastered the art of chewing gum without swallowing it, though we have talked about it and tried practicing it. So, if I give her any at all, it is usually just a half of a piece. Even with this tiny bit of gum exposure, though, it has become clear that she takes after me in her obsession for gum. When she thinks gum might be close at hand, she starts pleading (screaming): "Gun! I need gun! Give me gun!" (As you can imagine, this leads to awkward stares from strangers.)

Yesterday, I think, perhaps, maybe we stumbled upon a solution for Pink P's gum obsession. And, really, I only have a distracted Ren and a persistent Pink P to thank. See, yesterday Ren decided to wash and wax the car, so he took Pink P and went to the self-wash where he spent a good 45 minutes washing and waxing the car while, presumably, watching Pink P playing inside. "Wow," he thought, "she's doing a great job entertaining herself."

Any parent of a toddler should know that this thought needs to be followed by grave concern. No toddler plays that well for that long unless they are up to something. And it turns out that Pink P was up to something. She was up to digging my gum stash out of the glove box and consuming NINE pieces of it. Consuming. She did not chew it and spit it out. She ate it. The thing is, even though Ren saw the open glove box, and even though he found the 9 empty wrappers, he couldn't fathom that she'd eaten the gum--particularly since she was adamant in her denial of the alleged offense.

There had to be another explanation.

So he didn't mention the missing gum to me. Not until she started complaining about a tummy ache a good 8 hours after consuming the gum. And even then, because she is also working on a good (as in bad) sinus infection, I assumed the tummy ache was due to drainage and not to the giant glob of gum that must have been sitting in her stomach. It was only after she came out of the bath with the same funky smell she had before going in (imagine decomposing mint breath) that I realized she had indeed probably consumed a large amount of gum.

By the time we were concerned enough to call the doctor, everyone was gone for the day. Fortunately, internet searches in Japanese and English together with a call to the 24/7 pediatric nurse hotline confirmed what we already suspected. It will pass. It won't be pretty (and it will smell funny), but it will pass. I'm hoping in the end, at least, she will have finally learned not to swallow gum.

Monday, May 9, 2011

What? Me Worry?

Before Sky was born, I made a conscious decision that I would not be one of those worrying-type mothers. There were three reasons in particular that I was able to convince myself all would be fine: 1) Ren had done this before, 2) we were/are older parents so, in theory, could handle anything, and 3) worrying parents only seem to make their kids crazy. I didn't want to be one of those parents.

So it is that I approached the birth of my first child with a startling calm. And Sky as a baby made me think my approach was not only warranted but also really smart. He was not terribly fussy, grew like a weed, and slept through the night at four weeks. It wasn't until Sky was about 20 months old and he started day care part-time, that I was forced to start worrying. He was on target in terms of language and general knowledge but way behind socially--at least this is how the daycare helpers defined his propensity to run into things. Years later (as you know from earlier posts), we figured out what led to the discrepancy between his intellectual and social skills. And in the interim, we worried constantly (and sometimes still do) about his troubles interacting with his peers.

With Pink P, it was less a result of my conscious choice and more the result of circumstances that made me take a laid-back approach to parenting. She was born seven weeks before we moved to Japan for 15 months. In the intervening weeks between her birth and our move, we sold our house, packed up all we owned, divided it between storage and the seven suitcases we carried with us to Japan, and boarded a plane for Tokyo, where we knew no one and had no idea what kind of living accommodations awaited us. Pink P didn't do nearly as well sleeping at night as Sky did (jet lag + Japanese sleeping arrangements = sleep pattern nightmares), but she was an even more laid-back baby. Since we were new to Tokyo, we would often set out for the day with no idea where we were going or how long it would take to get there. This meant I had no idea where I would find the nearest breast-feeding/diaper-changing station. No matter! Pink P never once fussed when we were on these early excursions, and when I did manage to find a place to feed or change her, she always extremely grateful and patient. It was as if,even as a baby, she knew exactly what kind of family she'd been given and she was totally okay with (resigned to) it.

For her whole life, though, Pink P had a red, irritated spot on her face, which we attributed to her pacifier habit. And the summer we moved back to the US, when she was 18 months old, this turned into eczema and hives. Then, on her second birthday, we discovered what peanuts can do to her. (All I can say is that I am glad she decided she didn't like the peanut butter and only touched a little bit of it to her lips. I'm also glad that Ren demonstrates more presence of mind than I do. "Give her Benadryl," he said without even thinking about it). Extensive allergy testing confirmed all that we had started to suspect: she's allergic to dairy, soy, and peanuts (not to mention dogs, cats and several other food chemicals we haven't figured out yet). Most of these are just annoying--they make her itch or give her eczema, but apparently a single peanut could kill her. As the doctor put it, "She can be in the same room as a peanut, but she shouldn't touch it." And then he gave me an epipen--in fact, he wouldn't let me leave the office without one. The moment they give you an epipen, it all seems a lot more serious. My vow not to worry became virtually unattainable when I realized a stray nut could kill my kid.

So now we are waiting on #3. Maybe it's the fact that life is slightly less insane--after all, I am neither in the middle of my Ph.D. coursework nor preparing to move to Japan for 15 months. Maybe it's the fact that I am getting too old for this. Maybe it's the fact that we didn't plan this and we weren't expecting it. Or maybe it's because both Sky and Pink P have turned out to have some very worrying conditions. Whatever it is, this time around, I am pretty much scared stiff. I'm toying with denial as a potentially more healthy alternative to sheer terror. I'll let you know how it goes.

Wednesday, May 4, 2011

Learning to Drive, Part 4

I'm afraid part four is a bit anti-climatic. You could probably guess that I wasn't willing to pay $2000 to fix my $1100 car, and so I went back on the market for a car (the third car in less than a year). Mr. Shinohara, finally grasping the depths of my miserliness, sold me an even smaller, even older, and even more beat up car for just $500! It had less than a year of "shaken" left on it, but I didn't plan to be in Japan that long.

The best part about that car, which was also a stick shift, was that the engine invariably died twice each time I drove up the mountain to my second school. Since it did it consistently and since this usually happened on the steepest parts of the drive, I got pretty good at predicting when the engine would die so I could get out of the middle of the road before power left me completely.

If it hadn't been for a certain Japanese man I met half-way through my second year as a teacher in Japan, I would have kept driving that death trap up and down the mountain until it's final "shaken" day (at which point I am sure the car would have failed inspection and been impounded). But that guy (a.k.a. Ren) convinced me I was being too cheap and stupid for my own good. He also convinced me I might want to stay in Japan just a bit longer than originally planned. So the fourth car I got (yes, that's four cars in the span of two years) cost me a whopping $2500 (for a grand total of $4100 spent on three white, stick-shift, "K" cars).

I am happy to say that car and I lived happily ever after.

Okay, some more pictures. First, the road (you can see it at the end of the red bridge) where I nearly met my demise with the "falling rock" (or mountain side).

Next, same bridge, different angle:

My mountain road to school:

And the road to the "big city":

Alas, I can't take credit for any of these pictures, since I lived there in the days before digital photography...

Tuesday, May 3, 2011

Learning to Drive, Part 3


Though mine was much older and a bit more banged up.










Monday, May 2, 2011

Learning to Drive, Part 2

I am an admitted cheapskate. So even when it became evident that my Board of Ed (BOE) would let me get a car, I wasn't sure I'd find one in my price range (any free used cars out there?). After all, I hated to spend thousands of dollars on a car that I would only use for a year or two. Of course, I didn't know then that I would end up spending 8+ years of my life in Japan, but that, of course, is another story.

Aware of my extreme frugality, my colleagues came up with what they thought was the ideal solution. They would give me a car. Granted, the car was an old car used for official town business and had the name of the town painted on both sides of it. And the only reason they were offering to give it to me was because they didn't want to pay to dispose of it, nor did they want to pay the more than $1000 it would cost to put the car through the "shaken" (shaa ken)inspection cars had to have every three years in order to be driven legally in Japan. In order to make the car mine, I would have to pay for an inspection, but all things considered, it seemed like a good deal.

Except for one thing: the car had a manual transmission, and I didn't know how to drive a stick shift. (This turned out not to be the only "one thing" wrong with the plan, but that comes later). I have older siblings, and at some point in my young teenage life at least one of them tried to teach me how to drive a stick. None of them turned out to be patient teachers, however, and the experience ended up being fairly traumatic. After that, how hard could it be to learn how to drive a stick shift...in the mountains...on the opposite side of the road...that had no shoulder?

It was decided (a lot of my early experiences in the village were decided by consensus, without the least regard to my opinion) that my first driving lesson would be on one of the Wednesday afternoons I was forced to spend at the BOE during the school year. Somehow it was also decided that half of the members of the BOE would be giving me this driving lesson.

So the five(!) of us headed out on that sunny fall afternoon to test drive the car. It was a white station wagon, one that looked a lot like an elongated Pinto, and the first thing I noticed, besides the fact that the town name was painted on the side, was that there were no floorboards or carpeting inside. "Well, at least it's free," I told myself. The young OL Sawako, who was the only person in town who could speak a lick of English, was nominated to drive the car first. She hopped in and turned the key in the ignition. Nothing. She tried again. Again, nothing. Followed by a flurry of conversation in Japanese that I couldn't comprehend.

The next thing I knew, the other three guys, dressed in suits, were pushing the car through the city hall parking lot, toward the slope that led to the city ground (picture a huge circle of dirt the size of three football fields side by side--see the picture on the previous post? You can see part of the town ground in the picture). Suddenly, the engine kicked in, and Sawako was gone. The four of us stood there for awhile, expecting her to loop back around, and when she didn't I half-wondered if my free car had exploded with her in it. "No," I told myself, "I would have heard something."

Eventually, we figured out that Sawako was down at the ground waiting for the rest of us to get there. When we did, it was time for my driving lesson. Okay, so you can picture how well this went. Me, with limited Japanese, learning to drive a stick shift car with four backseat drivers and a broken starter. Each time I killed the engine, which I did a lot, the four of them, dressed in business attire, rolled out of the car and started pushing it across the dusty, dirt-covered town ground until I figured out how to get it started again. Now imagine that school let out and all the members of the junior high baseball team (all my students) were watching the ill-fated driving lesson while waiting for their coach to arrive.

Thank goodness for the baseball team! Our lesson was cut short when the coach showed up.

As we were walking back into the city hall and up the stairs to the BOE, the four of them tried to convince me of two astronomically absurd things: 1) the driving lesson went pretty well, and 2) the car was perfect for me. "After all," they argued, "My house was on a hill, so the slope would make it start automatically." (Forget the fact what comes down must go up, and, besides, once I got to the "big city" there were no hills at all. "Your friends could give you a push start," my BOE colleagues argued.) Yeah, right. Sometimes even a free car isn't worth it.