Thursday, August 22, 2013

Meet Pink P, Kindergartener Extraordinaire

Pink P's kindergarten teacher asked us to spend a page telling her about our children. I'm not sure this is what she meant, but here's what I wrote. Maybe I'll chuck the whole thing and start over.

* Pink has moved five times in her five years of life. Two of these were major moves (to Japan and back and from one state to another). Fortunately, Pink has always been good at making friends. 
*We try not to make a big deal out of her allergies. She loves it when she meets other kids with allergies, and she knows how to be careful about food. That said, she doesn't really get why such vigilance is so important. 
*Sometimes Pink can be quite ornery. I'm sure, in part, this is because she's the middle child, a girl stuck between two brothers. It doesn't help that her older brother demands attention due to his ASD and her younger due to health issues and general two-year-old boy shenanigans. 
* She's got a great sense of humor. She loves well. She loves big, and she loves often. 
*Pink has quietly mastered some impressive skills. She essentially taught herself how to tie her shoes, for example. So, for all her timidness and anxiety, she takes some pretty big steps on her own without even asking for help. 
*For the longest time, she would only wear pink dresses. She is more girly than I ever was, and she has a very clear sense of style. She insists on non-matching socks and loves it when her grandma paints her toe nails (something her mom refuses to do). 
*She likes Hello Kitty, princesses, ballerinas, horses, and unicorns. 
*Pink spent most of the first 18 months of her life in Japan, so her first language was Japanese. When we moved back to the US, she refused to speak for months. Now she can hardly speak Japanese at all, though we are trying to teach her. She's proud of her Japanese-ness and likes to tell other people she can speak Japanese (even though her pronunciation is pretty bad). 
*Her father only speaks to her in Japanese, so she often ignores him. 
*She's a great artist. She gets that from her dad. 
*Since her schooling experience has been so different from her brother's, I sometimes feel like I'm not "doing it right." It's great that I don't have to "micromanage" her day like I do for him, but I often worry that I will overlook or underplay something that's important to her. 
So, what do you think? What kinds of things do you write when the teacher asks you to tell him/her about your child? Help me out here!

Wednesday, August 21, 2013

Failure to Compute, Again.

Sometimes reading my FB wall can make me feel so foreign. Even now, more than five years after I ended my longest stint in Japan, I am amazed at the number of time I completely fail to relate to my fellow countrypersons. Sure, there are the numerous football comments that flood my newsfeed every Sunday in the fall (and they don't mean soccer) and the Elf on the Shelf updates that baffle me to no end. But I'm not talking about those, I'm talking about ones like the FB status update an old classmate posted that said:

"Just heard an advertisement for mattresses. They said no interest till 2018. If you have to finance a mattress you probably should not buy one. Funny stuff!!"

Or the one that equated economically disadvantaged students on subsidized lunches with foreigners living in the country illegally. This comment led to a thread about how undocumented workers are taking over the US without giving anything back to their communities or society at large. I wanted to pose so many questions to the folks on that thread, but, to be honest, I didn't know where to start. For one, how can you tell whether someone is foreign or not? And how do you know whether they are in the country illegally? I wondered how the discussants could be so sure that the economic strain was coming from the perceived barbarians from beyond instead of from the regular old folks living next door. And, most of all, I wondered how they all seemed to know that people who relied on social services found themselves there because they were lazy or uneducated or foreign.

Then there was the letter someone anonymously wrote to the parent of an autistic child suggesting the child should be euthanized. In so many ways, it doesn't even dignify a response, except that... Except that there are really people out there who really think special needs kids and adults should be out of sight and second class.

Finally, there was the interesting article about attitudes toward post-partum care in the US versus other countries that drew responses like:

"I am all for women taking time off after birth. I just don't want to be made to pay for it. You decided to have a baby? Great! Now accept the consequences (particularly the FINANCIAL consequences ) of your decision. Stop trying to pass your expenses on to those of us who chose not to have children."


"One thing is for sure, they don't make women the way they used to. I wonder how many had sissy labor and complaints about hospital conditions 100 years ago. Society getting soft, or what?"

Are we really that self-entitled, sexist, classist, and  racist or have we become immune to the loads of junk we see online or on TV everyday? Comments like the ones above, made by acquaintances and strangers alike, scare me. And, they break my heart.

See, I have lived with an immigrant. I have given birth and parented a kid with special needs. I have gone years at a time without livable income or affordable health insurance. In other words, "even the least of us" (Matt 25: 40) has been me at various points in my life, and those difficult times had nothing to do with my bad choices or lack of hard work. 

I KNOW I am being ridiculous when I say this, but, how about a little compassion?

Monday, August 19, 2013

Failure to Compute

My internal CPU is about to self destruct. In the midst of securing office furniture, resolving work-related computing issues, and creating syllabi for multiple new classes, I also find myself trying to figure out how to help the kids navigate another major transition: back to school.

Only there's nothing "back to" about any of this. New school, new classmates, new teachers, new commute by school bus, new everything. I'd hoped that moving a month before school started would give all of us a chance to get settled in, so that the school transition would go better. So far, I'm pretty sure the only things that month gave us a chance to do were: a) go crazy from the kids' constant hyperactivity in small spaces brought on by myriad changes and the fact our stupid basement playroom addition is about a month behind schedule, and b) realize so thoroughly that we really don't know anybody. Doesn't matter, though, since there's no time for a pity party.

Instead of self-wallowing, I came up with this handy-dandy guide for Sky's third-grade teacher:

A Guide to Sky's Autism Spectrum Disorder

There are three major areas that cause difficulties for Sky at school. 

1. Sensory Processing Disorder

Sky has several sensory integration issues. He is hypersensitive in some areas—his visual, auditory, and olfactory senses pick up on everything. He can see, hear, and smell things most people can’t, and this can be very distracting for him. When his senses overwhelm him, he either shuts things out (appears to ignore you) or becomes incredibly hyper. Sometimes when he seems not to be paying attention, it’s because he is trying to sort out the deluge of sensory input he receives at any given moment. Alternatively, though, sometimes when he seems to be ignoring you as he bounces in his seat or wanders around the classroom, he hears you perfectly because the movement is helping him concentrate.

His vestibular (balance) and proprioceptive (sense of body in space) senses are hyposensitive. This means he often seeks this type of input in order to feel okay. In some cases, he pushes, runs into, and otherwise touches his classmates in order to satisfy this need to balance his senses. Dark tight spaces and rocking or swinging, as well as his weighted vest or chest wrap can help reduce his need to seek input inappropriately.

You will notice that some days, he is very much in control of the way he processes the world, and other days, he is not. This may be the most frustrating part of working with him. We constantly strive to keep life as structured as possible, but he is extremely sensitive to change, whether it be a substitute teacher, an increase in air pressure with the changing weather, or new carpet in the hallway, and those changes impact his sensory processing.
2. Auditory Processing/Pragmatic Language Delays

Though he is bilingual and has a large vocabulary in both English and Japanese, Sky sometimes can’t understand simple instructions. When he doesn’t understand, he gets frustrated, leading to inappropriate classroom behavior. He does much better with visual guides. Verbal instructions should be short (and not multiple steps) and should not include abstract or colloquial language. Sarcasm is usually not appreciated. Neither are jokes. Often, he will not realize you are talking to him when you address the entire class. It can be helpful to stand near him or to put your hand gently on his shoulder to guide him.

Pre-diagnosis, Sky had many experiences of getting into trouble because he was unable to articulate what had happened. If he feels misunderstood (and particularly if he feels blamed for something he didn’t do or didn’t intend to do), it can cause him to fall apart. Reminding him that you are not mad and giving him a chance to express himself without interruption can help, but not always.

3. Trouble with Social Cues.

While Sky is extremely social and outgoing, he is not good at reading social cues. He doesn’t know whether people like him unless they tell him, and he doesn’t notice when he is making a friend angry or uncomfortable. This combination of outgoing-ness and obliviousness can lead to problems. Here's an example: At the school carnival, Sky cut in front of several older boys he didn't realize were waiting in line for the bouncy house. The boys then said something mean to him. He didn’t know he’d made them mad and couldn’t understand why they were “suddenly” mean to him. Indignant, sad, and unsure of what to do, he gave up on the bouncy house and came to me for help processing what had happened. (Fortunately, I'd seen the whole things and could explain his mistake). Situations like this lead him to think that people are mean or that they don’t like him, so it helps to explain why people react the way they do.

---When these issues all happen together:

When these issues collide (which is often the case), Sky can find himself on the entirely wrong track. Here are some examples:

When it was time to go to lunch, his homeroom teacher told him to go to the back of the line so he would have more time to get ready to go. He misunderstood and misread her body language, thinking she was angry. So, instead of following his class to lunch, last in line, he sat at his desk and waited for his teacher. She took the rest of the class to the cafeteria and had no idea he’d stayed behind. When she didn't come back, he didn't know what to do. Obviously, he thought, she must be very mad. When she realized the mistake, she was mortified...

A teacher handed out a math worksheet but did not explicitly tell the students to start working on it. Thinking he would make good use of his time, Sky continued to read his book. The teacher, thinking Sky was being disrespectful took his book from him and put it in her desk. He didn’t notice that other students had started working on the sheet and had no idea why he’d gotten in trouble. Further, he didn’t know what to say to the teacher to try to get his book back. Many days later, he mentioned to me he hated school because the teachers were so mean…

---And, finally, please remember:

First, he’s always trying his best. Second, he usually had good intentions. Third, sometimes his anxiety drives everything. And fourth, showing you know these things will go a long way.

Friday, August 16, 2013

Parenting Without Fear

A couple of days after news broke of the 13 year-old girl who died from anaphylaxis to peanuts despite three epipen injections (scaring the poop out of every parent of a kid with a peanut allergy), we ordered carry-out from a regional fast food place near our house. Generally, I like the place. There are pictures of trains on the walls, and you can get gluten-free buns. But, on this day, Pink noticed that her sandwich seemed to have cheese on it. She's prone to exaggeration, so I didn't believe her at first. I mean, I was pretty explicit when I ordered "hamburgers, no cheese." But, upon cursory inspection, it was clear that the burger had had cheese and that said cheese had been scraped off. When I called to complain, I was offered a $5 coupon and told I should be more explicit about our allergies in the future. This response infuriated me. Do I really need to offer a list of all my kids' food allergies every time we go to a restaurant? Can't I just order something without said allergens and assume it will be okay? I mean, I'm careful, of course. I know which restaurants use which kinds of oil, and I know where to go for gluten-free, dairy-free cooking. But I didn't know I had to spell out why our hamburgers shouldn't have cheese.

None of my kids have a life-threatening dairy allergy, but that's not the point. The point is that we are trying to live our lives without becoming totally consumed by the kids' food restrictions, and we are often thwarted by a general lack of care like we experienced at this restaurant. I know I'm being a total Pollyanna when I say I wish folks not directly affected by food allergies and sensitivities would adopt an "it takes a village" attitude toward the ever-expanding number of kids who are. These issues are real and life-altering for some people, and the chances are very high that if your kid doesn't have a severe food allergy, there is at least one kid in his class that does. Probably more. No one is immune from this. Am I saying you should change what you do to help my kid? In a way, I guess I am. I mean, at least, be aware of the highest risk foods and choose not to send them with your kid to school. You can still eat them at home. I don't even care if you send them to an afterschool activity that is more closely monitored than lunch or snack time at school. Most schools don't want to tell you you have to be nut free, so let me. Leave the nuts and the peanut butter at home. You don't want your kid to die from a food allergy any more than you want your kid to be the cause of another kids' death.

And that's what we're talking about here -- life and death. Because, see, there are the allergies that make life miserable and then there are the ones that kill you. I can tell you from experience that both kinds stink, but the whole death thing is worse. And, it's not like I'm making this up. I'm not some hypochondriac, helicopter parent hoping for your sympathy by announcing my child's food allergies. Actually, food allergies are a huge pain in my butt. Plus, they can kill my kid. There's always that. They can kill my kid. Can you imagine sending your kid out into the world knowing that a stray peanut could take them from you? Knowing that a well-meaning grandma with a peanut butter and cheese cracker could lurk around any corner, threatening your unsuspecting child? Sending my kid into a cafeteria where other kids are eating peanut butter is  a lot like sending her into a cafeteria full of kids wielding knives. I try not to over think it, but when I do, this is the kind of stuff I think about.

When Sky was two, Ren and I took him for a walk near our house. Just as we got to the sidewalk near  the end of our driveway, he darted across the street. It happened so fast that neither of us had time to stop him. Within seconds, I held him safely in my arms again, but the image of him running in the street played itself over in my mind in an endless loop. Sky knew better. We'd been on hundreds of walks, and we'd talked about pedestrian safety numerous times. And yet, in that split second he made a choice that could have been the end of everything. As I tried to figure out what went wrong, I had a revelation that has become fundamental to the way I parent. 

I am not really in control.

Everything I'd done to keep Sky safe, to teach him, to feed and clothe him didn't change the fact he made a bad choice. And, if a car had been coming around the bend just as he dashed into the street, none of my best intentions would have meant a darn thing. That's when I realized that all of my best efforts will only ever go so far, and the way things turn out in the end are dictated just as much by my kids' free will (i.e. Sky's choice to run across the street) and the hands of fate (i.e. the fact there was no car coming) as they are by me.

Between the asthma and the severe food allergy, Pink P will never be totally safe. I cannot control what she does, much less what people around her do. But, if I am afraid for her, she will be afraid for herself and that fear will keep her from achieving her highest heights. The trick, then, is to learn how to parent without fear. Most days, for me, this simply means staving off the panic moment by moment. Others I do better. I remind myself that people have been rearing kids for a long time, and, as far as I can tell, the human race is no closer to extinction than it's ever been. On the really good days, I manage to remember that I was never really in control anyway, and on those days, I'm able to let go because I know that I have taught them the best way I know how and that they are in the hands of God, anyway.

Monday, August 12, 2013

Scenes from a Restaurant (Or, More Accurately, Too Many Restaurants)

Five-year old girl in pink flowing dress, lying flat on the floor, spread eagle in protest of our restaurant seating arrangement. Shrilly, yet clearly, her high-pitched screams announce her intention to only and forever sit next to Mommy. Soon enough, there are no customers at any of the surrounding tables as they have all quickly moved away. Fled, really.

Moments before, an 8-year-old boy, tall for his age, demands to stand and stare at the fish in the tank. Who cares if his entrenchment inconveniently alters the flow of traffic from the kitchen to the tables of folks enjoying all-you-can-eat ribs? What's more important (to his mom, anyway) is the fact the boy's two-year-old brother has discovered the fish, too, and then effectively employed his stealth ninja-like agility to resist any attempt to put him into the high chair. Even better? The two-year-old has recently unlocked the immense power of the scream and knows it's particularly effective in restaurants.

A middle-aged woman sits in the middle of a bustling coffee shop, enjoying her pastry and iced green tea. To the casual observer, heck, to just about anyone, she appears to be a woman enjoying a break from shopping? From errands? From time out with friends? The real cause for joy? For once, she isn't forced to sit in the cramped MRI waiting room (surrounded by injured people and the ambient sound of pointless conversation and lame game shows on the television overhead) while her spouse naps comfortably in a 70 centimeter tube while magnets ping all around him. As she sits there reading her novel, she wonders at how pathetic she must be for enjoying the brief respite so much.

This restaurant is meant for kids, with its overpriced and salt- and fat-laden kids' meals and indoor play place. On a cloudy Tuesday, the place is packed with children burning energy and parents hoping to regain sanity, if only briefly. What could go wrong?

Fast forward, post unhealthy meal, and you will find one incredibly agile 2 year-old at the very top of a dark and curvy tube slide, crying because he wants to be there, but then again, maybe he doesn't. Ideally, the two-year old's older brother and sister would help him find his way back. Unfortunately for him, his older ASD brother has determined that he must experience the joy of the slide, fear be damned. An impasse.

The toddler's mother stands at the bottom of the slide, trying to calmly coax all three children down. Without raising her voice, she reminds the oldest that his brother may not be ready to go down the slide. She calls for the middle one hoping the girl might be able to convince her brothers to make their way down without a scene. In a sing-song voice, Mom tries to convince the littlest that it's really not that far.

Nothing doing. Mom tries climbing the slide far enough that her youngest can see her, but it's steeper than it looks. The play place resembles an elaborate gerbil run. She is nowhere close to the size of a gerbil. What to do? One son wants to play it safe. The other thinks he knows better. And she can't do a darn thing.

Then, the unexpected. A stranger, with three young kids himself, offers to climb up into the gerbil run. She can't imagine how her frightened toddler son will react to the stranger. Nor can she imagine that her by-the-rules, black-and-white son will let his brother slide with someone he doesn't know. But, really, she has no choice but to accept the man's offer. It takes awhile (close to forever) for the man to convince the kids teeming throughout the play structure to pause long enough for him to get down the slide with the two-year old. When he does, the child is beaming from ear to ear.


When Sky was three and Pink P still an infant, we flew off to Japan. Romantic as that may seem, it went a lot like this. The first week we we there, Sky broke his foot. With no car and no knowledge of the area, it wasn't easy getting him to the doctor. Within a week, he broke through his cast. This happened twice. A few weeks after that, he face-planted on my desk, putting a tooth through his cheek. Grossed-out and desperate on a late Sunday afternoon, we found ourselves holding Sky down while the doctor attempted first, novocaine and, then, stitches.

We don't move well. Nothing in our natures makes it easy for us. Doesn't matter, though. Life doesn't stop, or even slow, when everything gets hurled into the air like mortar boards after graduation. Fortunately, perseverance is one of our specialties. Just pray we don't run into you at a restaurant any time soon.

Tuesday, August 6, 2013

Is Something REALLY Better than Nothing? I Don't Know. You Be the Judge.

I know I haven't posted for awhile again, but I DID add to my "About Us" page. That counts for something, right? Since I know those of you who are "seasoned" readers have no reason to go read about us, I'm pasting what I wrote below (Thereby killing the proverbial two birds with one stone...Wait? What birds? I guess in this scenario, it'd be more like a killing a bird and a walrus, but you get the idea):

You might have noticed that the unofficial motto for this page is: "Where sh*t happens and your life is not boredom." I stumbled across the outfit that has become the logo for this page when I was a poor, sleep-deprived, and desperate not-yet-Ph.D in the throes of my dissertation research, lost in the tiny back alleys of Tokyo. We'd just packed up our seven-week old daughter (yes, that's right, she was less than 2 months at the time) and crazy, quirky 3 year-old son and moved them around the world from small-town Indiana to one of the largest cities on Earth. And I had absolutely no idea what I was doing. Dazed from lack of sleep and one too many all-nighters spent trying to pin down that ever-elusive first dissertation chapter, I found this cheap, yellow, infant-sized body suit, and it ended up being the perfect articulation of what it's like for me to be a mom.

Some folks have given me a hard time for having a curse word placed so prominently on my homepage, and I've considered removing it more than once. Thing is: that picture and those words kind of embody everything this blog's about. Life is messy. Things happen that we don't expect. Plenty of bad English and Japanese phrases are thrown around. And we keep going. If it weren't for the sh*t, I'd have nothing to write about.


Never fear, there's still plenty of sh*t to share. I just hope I can get enough sleep to actually be able to write about it.