Thursday, December 29, 2011

The Subway Experiment

We've been trying a little experiment at my house. It's called "The Subway Experiment" and otherwise known as "Going Out to Dinner without Major Incident." The hypothesis we are testing is that it is possible to eat out without someone yelling, running around, crying, or needing to leave the restaurant mid-meal. We also believe it is possible to do this consistently. It's that last part, the consistently part, that is tricky because no matter how hard we work to control all possible variables, we just can't figure out what triggers our eat-out failures.


To be totally honest, mealtimes are never easy, regardless of where we are having them. They can be especially tough for kids with sensory issues: the smells, the visual stimuli, the tastes, the auditory information, the tactile input, the need to sit still even though muscles might be jumpy and ready to move. And for Sky, dinner time, which comes at the end of a long day of working hard to keep it together, is the hardest meal of all. So at dinner time, we might see any or all of the following: constant vocalization or humming, inappropriate conversation, total focus on the baby (or any other distraction) and not on his food, aimless wandering (away from the table), crying, anger about what is on his plate or how it is arranged, and an inability to finish his meal because he is too tired (he will literally leave the table and fall asleep on the couch within 30 seconds). Or, if we are lucky, we might see none of these things.

It helps a lot to have food on the table and ready to eat by 5:30. This means I start cooking the minute I walk in the door some days. I cook instead of Ren because I have much better timing. By far the superior cook, Ren creates meals that can hit the table anywhere between 5:30 and 7. Unfortunately, most days, we can't manage such a wide margin of error. On the days when I can control for all conceivable variables, we are able to get through a meal with only one or two minor incidents of inappropriate behavior.

When we go out, though, these incidents can be greatly magnified and occur in quick succession. So I've been trying different things.

Before we exit the car and head into any restaurant, I always ask the same question: "What are the rules of the restaurant?" and the kids dutifully respond: "No running, no yelling, stay in our seats, listen to Mommy and Daddy." They say this with such precision, you'd think we were the Von Trapp family minus the singing. But despite their apparent awareness of what is expected, the moment we step into the restaurant, things often deteriorate quickly. Some days, Sky literally takes laps around the restaurant. Most days, he yells, especially when he is in the bathroom (the echo is appealing). Occasionally, he crashes into things and falls on the floor. Rarely, he discovers a new pain or problem that makes it impossible for him to do anything but cry. These are all understandable (though not acceptable) behaviors given his sensory challenges. Unfortunately, none of them are appropriate in a restaurant, nor to they contribute to a relaxed dining experience for us or for the people around us.

For a long time, then, we avoided eating out altogether. As Sky has made progress with OT and at school, we have tried to slowly but surely help him have successful dining out experiences. That's where the Subway Experiment comes in. We've decided to start small, with Subway, and work our way up.

When it became clear my review of the rules of the restaurant and a pep talk about proper social skills weren't working, I tried mixing it up.

Experiment 1:
Assigning tasks. Sky's job was to help order and Pink P's was to help carry the food to the table. Fail. (Running back and forth to the table, inability to settle down and eat).

Experiment 2:
Practicing silence (this has proven effective in other settings). They weren't supposed to talk while I was ordering and during the first ten minutes of eating. Fail. (Screaming).

Experiment 3:
Dinner with video game to distract Sky from various visual and auditory stimuli. Fail. (No food was consumed).

Experiment 4:
Hands-on guidance. I tried holding their hands, walking them to the table, and helping them get completely situated before going to order. Fail. (This one was close. We made it through the meal and almost out the door before Sky decided to act like a race car and crash into the toy display and numerous chairs on his way back from the bathroom).

For my next experiment, I plan to make a visual schedule that incorporates the rules of the restaurant and all the steps involved in a successful eating-out experience. And, if that doesn't work, I may employ the weighted vest and preemptive brushing.

And while we still haven't had a successful Subway visit, we have had a couple of successful trips to sit-down restaurants (two, to be exact), so now I am wondering if my experiment is patently flawed. Maybe it's the abundance of yellow. Maybe it's the air dryers in the bathrooms. Maybe it's the manufactured bread smell. Maybe it's Subway...

Friday, December 23, 2011

Christmas Confession


It has only been in the past couple of years that I learned about the elf on the shelf and how effective he could be. While I can certainly understand the appeal of having my kids behave just because they think a fake elf reports their every move to Santa Claus, I have not felt particularly compelled to employ elf powers at my house. First of all, I know I would consistently forget to move the darn thing, disappointing the kids every morning. Sometimes I'm not good with the small details. Just tonight, Sky and Pink P had to put twenty-one tiny ornaments on our advent tree. That's right. I only remembered to have them do this on December 1st, and for the twenty-one days since then, the tree has gone undecorated. Until today. Now they are super excited about Christmas because they had no idea it was so close.

Second, I have serious doubts the elf would produce better behavior at our house. I think it would only produce bad behavior in rooms without judgmental elves in them. I find the go-pick-out-which-present-under-the-tree-you-want-me-to-return-to-the-store approach to be exceedingly effective. Plus, if we have an elf, I will feel compelled, no obligated, to explain Foucault and panopticism to the kids, and nobody wants that!

Besides the hassle that shelf elf represents to me, I am also leery of lying to the kids on a daily basis. Sure I have to evade the truth on occasion when discussing Christmas with the kids. Sky is dubious. Last year, he expressed his skepticism about Santa on a number of occasions, and I was very, very close to spilling the beans (if you don't know what I mean by this, for the love of God, stop reading now!!). Very rarely does one of them ask me directly whether Santa exists or not. If they do, I say perfectly noncommittal things like, "People say Santa has helpers that work as mall elves." Or "I've heard he flies at the speed of sound, but I am not sure I believe it." Actively promoting the elf myth would make it harder for me to keep my conscience clear.

Lest you think I've always been this concerned with promoting trust and honesty in the relationship I have with my children, I feel I should confess a few things about Christmases past. In the spirit of Christmas, don't judge me too much!

1. I've used The Bumble to scare small children.

The year Sky was three, we let him watch Rudolph by himself while we struggled to get the tree up and the lights on. He'd seen the movie the previous year, and we knew he liked it. We hadn't taken into consideration the developmental changes of the intervening twelve months. During the movie, we didn't hear so much as a peep from Sky. He wandered into the room just as we put the final touches on the tree and I pulled out our animated plush Bumble and pushed the button. After a growl and some blizzard sounds, it launched into a rendition of "Holly Jolly Chirstmas," perhaps one of the cheeriest Christmas songs ever. The cute Bumble with its cheery song completely freaked Sky out. It freaked him out so much, we thought he was pretending. He wasn't. So, the Bumble went into the closet, and whenever Sky got out of line, all we had to do was go crack the door to the closet. We didn't have to say a word or, gasp, push the button to trigger the awesome song. I'm not proud, but it sure did work!

2. I believe in manipulating the Christmas wish list.

Sky and Pink P have birthdays between Thanksgiving and Christmas, so I start shopping early. As a hopeless bargain shopper, I buy things on sale and then begin the delicate process of making sure they ask Santa for the toy I already purchased. So in early November, I say, for example, "Sky, wouldn't it be awesome if Santa brought you X? Let's write a letter to him and ask for it." After Sky and Pink P write the letters, I occasionally mention the toys and talk about how exciting it would be if Santa brought them. When we go to visit Santa, I remind them of what they wrote in their letters, so they can remember to ask for it.

In short, I completely brainwash my children. Every year, I think it will no longer work, but it always does. I feel kinda bad, but it sure is nice to have control over what toys become part of our lives and how they impact our wallet.

3. I've bought Christmas presents from Santa while my kids were in the cart and then lied about it (of course).

Sometimes when I am shopping with the kids, I find a deal that can't be passed up! So I say, "Look, Sky, this is the exact present your cousin wants for Christmas! We'd better get it for him!" This is followed by, "Wow! This is a great toy! Maybe you should ask Santa for one, too." And after that, I employ the tactics described in number 2. Since Pink P doesn't have a cousin her age, and since Sky and his cousin are interested in totally different things, it rarely works anymore, but it sure was nice when it did.

So, no, I don't use that cunning little elf, but I'm no angel. Shhh... don't tell my kids!

Tuesday, December 20, 2011

Ten Things that Suck about Childhood Asthma

It doesn't take a rocket scientist to figure out that childhood asthma sucks. For those of you who haven't experienced it first-hand, here's a list of the ten things I hate about having a kid with asthma. (This list doesn't include the most obvious thing I hate about it, and that is that my kid sometimes can't breathe and there's very little I can do about it.)


Triggers:

When your kid is diagnosed with asthma, you are told to avoid the things that trigger her asthma. Well, duh? Thing is, each person is different, so you have to figure out the triggers for yourself. The common ones include: smoke, dust, humidity, pets, colds, sprays, marker odor, exhaust, exercise, powders, cleaners, mold, crying, perfumes, pollen, food, and meds. So...just about everything. Not only that, but most of these triggers are essentially invisible.

They sent us home from the hospital the first time with a journal so we could track her condition and begin to identify triggers. I tried using it, I really did. But, most days, nothing happened. And on the days something happened, there were no obvious triggers. None at all. So far, the only thing I can say with any confidence is that she is more likely to have an asthma episode if she is already sick. But what causes her to be sick? Are colds turning into asthma or is the asthma causing cold-like symptoms? Who knows? I know I don't.


The symptoms
:

The triggers are as nebulous as the symptoms. During our "education," we learned to look for symptoms that Pink P might be headed for a flare up. They include: coughing, shortness of breath, chest tightening, wheezing, reduced activity, and inability to sleep. First of all, Pink P has never been a great sleeper, and she seems to have a cough most of the winter, no matter what, so these two symptoms are not reliable signs.The material tells us that we should look for four or more coughs per minute, obvious sucking of the chest, or increased breathing rate. But by the time we get to any of these symptoms, we are headlong into a flare-up and on our way to the ER. There is no going back. I can't tell you how much it stinks to miss the early warning signs (if there are any) and end up with a kid who struggles for every breath. I can't imagine a more effective producer of mom-guilt!


The "zones":

Green = good. Red = bad. When Pink P is in the hospital, we receive a lot of asthma education. Don't get me wrong. I appreciate being educated, but they make it seem so easy. In theory, Pink P's symptoms should alert me to her triggers and also indicate whether she is in the green, yellow, or red zone. Problem is, as far as I can tell, she is all green until she isn't, and then we end up in the emergency room. Using pretty colors as visual cues does not help me figure out when she is slipping into an episode, so the interventions that should go with each zone end up being only marginally helpful. Once she's old enough to use a peak flow meter, I hope this will get easier. For now, I am hanging on every breath...and cough.


ER:

Once you've misread the triggers and find yourself with a kid whose symptoms clearly indicate an asthma episode, you can only do two things. First, you can give her breathing treatments that include fast-acting meds to reverse the symptoms and get her breathing better. After back-to-back treatments, if the symptoms persist, your only other option is a visit to the ER, particularly since asthma is usually worse at night (and on the weekends at our house, for some reason). There's nothing I like more than a middle-of-the-night or early-morning visit to the ER. Nothing. After many hours of waiting and trying to keep your preschooler happy in the confines of a triage room, you will either be sent home (if the steroid they gave her after 2 hours of waiting works) or admitted (if it doesn't).

My new plan is to start the steroid at home (since we have extra) if Pink is slipping into an episode and hopefully avoid the ER altogether. But, even then, if the steroid doesn't work, we will find ourselves right back in the ER waiting to get admitted. This last go around, Pink P and I spent a total of 9 hours in the ER over the course of two days. Asthma already sucks. I really wish it didn't entail visits to the ER.


Sudden hospital breaks from life:

If your kid can't breathe, she gets to go to the hospital. Pink P doesn't seem to mind so much. She has her own TV and can watch it all day long. The nurses bring her juice whenever she wants it, not to mention the occasional Popsicle. Grandparents and friends come to visit and bring toys. It's not a bad gig (except for that not-being-able-to-breathe part of it). Thing is, when your kid is in the hospital, so are you. This means life as you know it becomes frozen in time and space. The world literally goes on without you, and somehow you just have to manage.


Pulse oximeter readings:

Pulse oximeters measure the level of oxygen saturation in the blood. Healthy kids have pulse oxes 95% or above when awake and 90% or above when asleep. When Pink went to the ER during the first episode, her pulse ox was 87%. Once a kid is hospitalized, she gets her very own personal pulse oximeter. Forget the fact that she hates keeping the darn thing on her finger or toe or the fact that it makes going to the bathroom that much more challenging. The pulse oximeter also constantly reminds us of how little Pink P can breathe. Plus, it records and transmits her stats to a command center, so whenever her levels drop too low, a nurse is notified, and Pink P has to use supplemental oxygen. As long as pulse ox readings are consistently below 95% (awake) and 90% (asleep), you can't leave the hospital. There is no get-out-of-jail-free card. You just have to wait and try not to obsess about that little number.


Nasal oxygen cannula:

Supplemental oxygen comes through a nasal cannula--a little tube that is wrapped around the head and placed into the nose. You can imagine how much Pink P doesn't like this thing. It's uncomfortable, and it smells funny, and every time she moves, it comes out (unless they tape it to her face which just seems cruel). Every time it comes out or she removes it, her pulse ox drops and the nurse shows up. Sometimes the nurse is not happy to see us. We've had the biggest screams/cries at the hospital over nasal oxygen.


Medication doses and frequency:

Figuring out the medicine protocol for a kid with asthma requires a graduate degree. At least, this is what I assume since the instructions read like a GRE logic problem. There are a lot of if...thens involved when dispensing this medicine. If your child is in the yellow zone, then use X two times, ten minutes apart. If she is in the red zone, then use Y instead. Pink P left the hospital this time with five different medicines prescribed to her. That's a lot to keep track of! My favorite is the steroid. The instructions on the bottle read: "Take 6.7 ml every day x 2 days, then 3.3 ml x 2 days, 1.7ml x 2 days, 0.8 ml x 2 days, then stop." I don't know about you, but none of the spoons or syringes we have for dispensing medicine is that accurate.


The nebulizer:

Kids under the age of five take most of their asthma control medicines through a nebulizer. I think it's awesome that we live in a day and age when Pink P can get these breathing treatments at home with her very own, very cute seal-shaped nebulizer. Pink P does not share my sentiments. The nebulizer slows her down and cramps her style. Sometimes the treatments can last more than 20 minutes. This means she has to remain in one place for 20 minutes. This wouldn't be so bad if it were only on occasion, but sometimes she has to have these treatments 3 to 5 times a day. To add insult to injury, the mask usually messes up her hair and the steam coming out obscures her view of the television (which is pretty much the only way I can get her to endure the treatments. Thank goodness for PBS Kids On Demand!) This time around in the hospital, I learned that the solution she has to inhale is salty, and the salt burns her lips which are already chapped from the dry hospital air. Note to self, the next time we go to the ER, take lip balm!


Inhaled stimulants:

The medicine that is being inhaled through the nebulizer can cause restlessness, irritability, nervousness, and heart palpitations. In other words, it's a stimulant. There is nothing like a preschooler on speed. Nothing.

*****

I obviously don't have it all figured out, but this is life with asthma as I see it today!

12.21.11 Update: There may be hope after all. Our new pediatric pulmonologist tells me that if we can get Pink P's preventative meds dosed right, we may actually avoid emergencies. That'd be awesome. She also burst my bubble of denial by pointing out that a near-constant cough, three trips to the ER, two hospital stays, and repeated need for steroids means this is not a mild case of asthma.

Saturday, December 17, 2011

The Birthday Party, Part 3: The Moral

In the end, seventeen of Sky's friends and two of Pink P's joined us for skating. I anticipated Sky would melt down at least once about not being able to skate and that Pink P would melt down about the discrepancy in presents. I also figured neither kid would be thrilled about the big skating panda that helped birthday kids celebrate.

I was wrong. But only slightly. Sky didn't melt down about skating. In fact he loved it, and Pink P didn't notice or care about the presents, especially since I had them open them at different times.

Here's what I didn't expect: I didn't expect the woman from the skating rink to narrate the play-by-play panda skate with,"Neither the birthday boy or girl can skate! Look at Pink P struggle! Poor Pink P...." I didn't expect Pink P to have an existential crisis brought on by her newfound ambivalence about skating. Put the skates on. Cry. Take the skates off. Cry. Repeat. It didn't help that we had to travel half way around the rink to get from our party table to the kids' practice rink. Every time Pink P took off her skates she insisted on going back to the table and putting on her shoes. Then, by the time she walked back to watch her friends in the practice rink, she was ready to try again. So back to the table to put on the skates. Fortunately, while Pink P and I were walking back and forth, Sky had a blast skating with his friends.

In fact, Sky kept it together pretty well. Until time for cake. The very thing I expected to be our saving grace was nearly our downfall. It all started out just fine. The kids gathered at the tables, taking a break from various forms of skating. Candles in place, four for Pink P and seven for Sky, the group started singing. By the time we got to, "Happy birthday de~ar Pink and Sky~...," half of Pink P's candles and three of Sky's seven had fallen victim to a boy who took advantage of each "ha" in "happy birthday" to blow them out. By the end of the song, few lit candles remained. Puzzled, Pink P blew out the remaining two with a shrug of her shoulders. Oblivious, Sky took a moment to make a wish. In that moment, the little girl in his class who wants to marry him, ducked around him and blew out the rest of his candles.

I honestly didn't see that coming.

So, of course, I didn't react quickly enough. If I had, I could have gotten my hands on the matches and relit his candles. But I didn't. Sky leaned in to blow and only then realized the candles had all been extinguished. From the look on his face, I could tell he thought Pink P had done it. Before things devolved into sibling warfare, I had to intervene. With no other recourse, I told him his friends had accidentally blown them out when they were singing. For a brief moment, I thought he might take it okay.

He didn't.

Instead, he stood up and removed himself from the group. (For what it's worth, his ability to remove himself before melting down shows that our time at OT is paying off). Ren tried to soothe him while I corralled the rest of the kids. It wasn't until most of the kids had eaten most of the cake that we managed to secure more candles and reenact the song and candle-blowing sequence. Then, and only then, could Sky be pacified. And after a few bites of cake, he was back to skating with his friends.

In the end, everything turned out okay. And what did we learn? We learned you can never really anticipate what will go wrong, so you might as well stop trying.

Tuesday, December 13, 2011

The Birthday Party, Part 2: Never Underestimate the Power of a Good Cake

Perhaps the woman at the skating rink had a point. What if the kids didn't like skating? Maybe we should go on a test run before the actual party. I left the rink with every intention of taking Sky and Pink P skating the next Saturday. But then a friend pointed out that they might hate skating, so maybe we should wait to make that discovery on the day of the party. After all, any ill-feelings toward skating would naturally be overshadowed by the excitement of friends, cake, and presents. Caaaake... Yummy cake with thick, rich butter cream icing. Mmmm... (See, you've forgotten about skating already, haven't you?)

Venue secured, the next challenge: create a guest list. I planned to have Sky invite all the boys in his class, and Pink P all the girls in hers. A perfect plan except for one minor detail, neither Sky nor Pink P liked it. Sky wanted to invite everyone, and Pink P only wanted to invite two friends. Two friends! This meant the ratio would be 11:1 . No matter how I looked at it, I couldn't imagine how gift opening wouldn't be a complete disaster. Pink P with her two presents, Sky with his 22. That's twenty more presents for Sky than for Pink P, and even though she doesn't get caught up in issues of fairness like her brother does, I was pretty sure she'd notice that difference.

So, I tried reasoning with them some more. I suggested Pink P add a couple of her play date friends and Sky focus on the boys. Nothing doin.' Neither kid showed any sign of budging. So, we mailed 22 invites to Sky's classmates and 2 to Pink P's, and I spent the two weeks until the party trying to get Pink P to add some friends. She wouldn't be persuaded (until of course the day before the party when she decided she wanted to invite the friends I'd been suggesting all along. Sigh.)

Since the skating rink wouldn't let us bring in snack food, and since they provided the decorations, the only other preparation I had to do was to get a cake. (You might question my choice to have a skating party for kids who can't skate, but you have to agree that I'm good at finding a low-maintenance party).

We have a secret weapon when it comes to cakes. Big Sissy is artistic and icing is one of her best mediums. Each year, the kids make a request, and each year Big Sissy delivers in style. This year, they wanted Cars 2 and Hello Kitty.

In previous years, they've requested Star Wars (Sky, 6):



(sorry for the uncool whiting out of their names--they haven't given me permission to tell stories about them online, so I have to keep them anonymous)

Hello Kitty (Pink P, 2):



Speed Racer (Sky, 5):




Shinkansen (Sky, 2):



And when Sky turned 1, Jo Jo the Clown (Ren and I were fascinated by Jo Jo--was it a boy? was it a girl? Sky didn't care, but the mystery was too intriguing for us. It wasn't until the episode when they went swimming that we finally knew the truth.):



Big Sissy pulled through once again, and made this for their party:




If all else failed, at least we would have a cool cake! Preparations in place, we eagerly anticipated the big day.


To be continued...

Monday, December 12, 2011

The Birthday Party, Part 1

Besides managing to avoid decorating eggs for Easter until this year, we also managed to avoid giving Sky a big birthday party with friends. Ever since we moved back to the US when Sky was in preschool, he's asked to have a party and invite his whole class. In past years, I have been able to come up with plausible alternatives to the big party, but not this year.

In a valiantly misguided effort to make the whole process slightly less painful, I decided to do a combined party for Sky and Pink P since their birthdays are within a month of each other. Given Ren's undying habit of being the perfect host no matter what the occasion, I also decided we could not have the party at home. Before you start thinking I'm a great wife because I'm looking out for Ren's well being and trying to help reduce his stress, I should probably admit that my reasons were purely selfish. Whenever we have company, Ren turns into uber-host (think Soup Nazi on steroids) and becomes impossible to live with for weeks beforehand (and sometimes even after).

[Okay, so I know you don't believe me on this, so here are a few pictures from Sky's first birthday:]




In the top left picture, notice the large rice cake that he pounded himself and decorated in celebration of his first son's first birthday. And then there's the money, calligraphy brush, and calculator that Ren used to determine Sky's future strengths. The other two pictures are the foods (red bean rice and pot stickers) he made by hand in preparation for Sky's first birthday party, which, by the way, only included a few family and friends.]

So in a stab at self preservation, I suggested we have a roller skating party. Sky and Pink P embraced the idea. After all, they'd always wanted to try skating.

Now, I know you're thinking I'm insane to plan a skating party for two kids who can't skate, one of whom also has some serious sensory integration issues. And you are probably right. I mean, can you just imagine proprioceptive-seeking behavior on skates?

The lady at the skating rink didn't know about Sky's challenges, but she was still leery--leery enough to try to talk me out of making the reservation.

"This isn't our recommended party for four-year olds," she pointed out, not at all impressed by my forced enthusiasm.

"Only some of the kids will be four," I said. "Most of them will be seven," Then I foolishly added, "My kids can't wait to try skating."

She arched her eyebrows, "Are you really sure you want to do this?"

Of course I am. Why wouldn't I be?


Monday, December 5, 2011

Top 10 Lessons for a New ASD Mom

I'm calling this blog entry "Top 10 Lessons for a New ASD Mom," but I'm not really a new ASD mom. In fact, I've been an ASD mom for 5 or 6 years now. I just didn't know it. Next week marks a year since we got Sky's diagnosis. I've learned a lot of important lessons over the last twelve months, so I thought I'd share them.

Top 10 Lessons for a New ASD Mom

10. We're actually not bad parents.

It's so much easier to see this when you realize your kid is on the spectrum and not ignoring you and doing annoying things just to drive you crazy.

9. When going to case conference meetings at school, it helps to take the following: written documentation, your spouse, a baby (if available), a copy of the special education laws for your state, outspoken fellow moms who aren't afraid to piss people off, a notebook, and your sense of humor (you can't use it there, but it sure is good to have).

8. Sometimes the five senses can be our enemy.

Sky will probably never be much good at sports that require him to run around in a bright gym full of loud voices and echoes. But, on the bright side, he can hear a cotton ball hit the floor two rooms away. Plus, that kid can sing!

7. The best tools are often right under our noses.

I now have a whole new appreciation for surgeon scrub brushes, chewing gum, and just about anything small enough to fit into a little boy's pocket and keep his hands busy when he's walking to and from his desk at school.

6. There are just some people who deserve to be ignored.

These are the people who thought there must be something wrong with Sky but who now refuse to believe the diagnosis and instead imply we are the reason for Sky's problems and are using Sky's "label" to get special treatment for him.

5. Johnny Cash could find a pretty good cult following in kids with sensory issues.

4. Everyone needs a mantra.

Ours is: "It's an explanation, not an excuse." Constantly reminding ourselves of this has helped us keep Sky's diagnosis and all that comes with it in perspective.

3. Social stories really do work despite the fact they have two-dimensional characters and lack a compelling narrative.

2. We are not alone.

There are a lot of folks out there who know what it is like, including some rockin' mom bloggers (and some dads, too) who have helped make this all just a little bit easier.

1. It gets better.

Thursday, December 1, 2011

A Christmas Story

The coming of the Christmas season reminded me of a heartwarming story from our time in Japan. In the spirit of peace and goodwill for all, I wanted to share it with you.

Hoping to get Sky started on learning Japanese characters, Ren signed him up for the Benesse Kid's Challenge (Kodomo charenji), a mail-order supplemental study series. Each month, we received a book, a workbook, and some kind of hands-on activity. Sky was thrilled to read the fun stories, put the stickers in the right places, and use the cool gadgets that came.


Take this guy, for example, even now, every night at 7:30, he reminds Sky it's time for bed. He came with a lesson about telling time and schedules. Every month brought a different theme related to the season, so the January issue was all about New Year's celebrations, the April issue was about the first day of school, and the July issue focused on stag beetles.

By December of the year we spent in Japan, I eagerly anticipated the new issue's arrival. When I first took it out of the envelope, I was pleasantly surprised to see the theme was Christmas (as opposed to other end-of-the-year festivities). "Ahhh, it's a Christmas tree," I thought, "Sky will be so excited."


Then, I looked a little closer. Wait, a minute. Is Shimajiro eating a Mister Donuts donut? And, aagh! What's he doing in the other picture?

The subtitle on the cover asks: "Where does the food we eat go?"I started flipping through the pages and soon discovered that the theme of the month was the digestive tract, and the focus? Poop. How is it made? What color is it? Where does it go? What happens if you wait too long to take care of your business and you get backed up? This issue had everything a kid (or anyone, for that matter) would ever want to know about poop.

Soon disappointment set in. All the other months had themes that tied in nicely to the season. But poop and Christmas? I just wasn't seeing it.

Then I saw this:



The instructions read: "Let's make a poop calendar! What kind of poop did you make today? Read the key below and color the circle for each day." And the key, in case you can't guess by looking, explains: "For days your poop is shaped like a banana, use yellow. For days when your poop has another shape, use blue. On days you don't poop, use red." It was brilliant. It taught kids to follow directions, to recognize and apply the appropriate colors to the appropriate circles, and to be aware of their bodily functions. This exercise even had the potential to teach kids to recognize patterns!! And the bonus? They end up with a colorfully decorated Christmas tree.

Now, I know I can be cynical, but I am pretty darn sure the only reason the folks at Benesse decided on Christmas and poop for the December 2008 issue is because of this chart. I'm not sure why I was surprised, though. This is the country that brought us Everyone Poops, after all. And that's what I love about my life. I couldn't make this sh*t up if I tried.



Tuesday, November 22, 2011

Does Intentionality Matter?

I've been thinking a lot about what it means to be understood. As an ASD mom, I often feel like most people, even those who are supposed to be specialists, really have no idea what it's like to live with autism in your family. Friends, family members, and teachers all seem to be pretty good about listening to stories about life with Sky, but they often fail to extrapolate to apply what they are learning about autism when the s**t hits the fan. To be honest, sometimes even Ren and I fail to apply what we have learned since Sky's diagnosis. It can be pretty hard to keep a neutral voice and facial expressions when Sky having a massive meltdown about putting on his belt, for example.

Sky's high functionality is a double-edged sword. Since he is on target academically, our only real option (at least where we live now) seems to be a mainstream classroom. I know we are blessed to have a kid on the spectrum who can generally function in a regular classroom, but it is also feels like a curse. In a lot of ways, he only appears to be "normal." As his parents, Ren and I have figured out a lot of the idiosyncrasies that come with his ASD. The same cannot be said for his teachers, and unfortunately, since he is only with each teacher for a year, we spend most of that year explaining why Sky said or did whatever he said or did. Here are some recent examples of the challenges.

*****

Today at pick up time:

Sky was wandering around the pick up area walking through each puddle while the classroom assistant followed him and verbally directed him to go back to the building and practice proceeding appropriately to the pick up spot. Since this was taking some time, I attempted to make small talk with his homeroom teacher who was standing nearby, "He often hyper-focuses on puddles." (Which is true. He tends to get obsessed by puddles and how they are like oceans to ants and how if you step in them to make ripples, it's a lot like creating an ant tsunami). She responded somewhat aggressively, "Right now, he seems more focused on ignoring Mrs. X" (not her real name, obviously).

Even if you know very little about kids with ASD, you know that they can tend to seem to slip into their own worlds. Granted, Sky can do this at inopportune moments, but it would have been nice for his teacher to entertain the idea that something less malicious was happening. Later, I asked Sky why he was ignoring Mrs. X and he emphatically told me he wasn't ignoring her. He heard everything she said. He just needed to test the puddles.


Upon pick up on a day when I taught late:

When I arrived, Mrs. Z (the woman in charge) said, "I'm so mad at your son"
"Why?"
"I can put up with a lot of things, but I just don't like it when kids are rude or disrespectful to adults."
Showing disrespect doesn't tend to be Sky's MO, so I prodded a little: "How was he rude?"
"He went out of his way to go to the other side of the gym to bounce his ball on the wall between two adults who were talking."
(She was so upset about this, you'd think he did something much worse.)
"Maybe he didn't notice them," I offered.
"It was obvious they were talking," she countered.
"You remember he's on the autism spectrum, right. Thing is, kids like him miss social cues. It probably didn't occur to him that they were talking."

She didn't seem to believe me, so to appease her, I told her I would talk to him. And I did. And, like I figured, he had no idea the two people were talking or why Mrs. Z was so short with him.


At school open house:

Upon seeing a classmate's one year-old brother, Sky proclaimed rather loudly, "I can beat him up." Then soft enough that no one could hear, "I'm super fast!" "Oh, you mean you can beat him, like in a race?" I corrected. Unfortunately, now all the other parents think he was threatening to throttle a toddler. (Go ahead, say it three times fast. You know you want to!)


In P.E. class:

Sky ran into two girls who were holding hands and knocked them down. Apparently he was trying to separate them, and when the P.E. teacher asked him why they shouldn't hold hands, he said, "Because you know what that leads to!" So now the P.E. and homeroom teacher seem to think he is using innuendo to refer to God only knows what. (Note: I practically LOL-ed when I realized they thought he was using innuendo. Fortunately, I managed to restrain myself.) I don't suppose it occurred to them to ask him what he meant. When I did, he said, "If all the girls hold hands, the boys will feel left out."

*****

This kind of thing happens all. the. time. with Sky, and it really makes me wonder why it's so easy for people to misunderstand him but so hard for them to give him the benefit of the doubt. We can and should continue to correct Sky and his miscued behaviors by reminding him what is appropriate in any given situation, but assigning ill-intent to his actions probably isn't going to help. Still, this has led me to wonder: does intentionality matter? And if it does, how do we help his teachers better read his intentions?

Friday, November 18, 2011

Sky in Motion




Yeah. This is a little of what it was like to have Sky in Japan at age 4. See him in the distance? Running away...

Wednesday, November 16, 2011

Schoolhouse Blues, Part Deux

"He did not have a good day," his teacher told me as she shoved him in my direction.

On a typical day, the entire class comes out to the playground to be picked up by their parents, but on this day, Sky had an appointment, so I got there five minutes before the final bell and waited for him outside the classroom. As I neared the door, I heard his teacher say, "Sky, if I have to hold your hand all the way to meet your mom, I will." It was not a kind gesture of support, but a threat made to him in front of his peers. Ducking out of sight so my presence wouldn't make it more difficult for him to pay attention for those last five minutes, I only glanced in long enough to see that he had returned to his desk from his cubby and that she was grasping him by the collar. He sits in the front of the room, so all of his classmates could see her holding him this way. When she brought him to me, she had her hand on the scruff of his neck. Because he sometimes needs hands-on direction, there are times when I guide him gently by the neck, so I didn't think anything of it. None of what I was seeing really registered. Only as we were getting into the car did I realize that her grip had left a red mark.

By all accounts, this is a good teacher. One of the best teachers in the district. She has her classroom set up to encourage maximal functionality for a kid like Sky. There are sound-deadening head phones, multiple opportunities for movement, and various visual cues taped on the walls throughout the room. If Sky needs to be away from his peers, she has places for him to go so that he can do his work. Her language is clear and direct and easy for him to follow. But somehow I saw this break down yesterday. And I worry about what I am not seeing during the numerous hours he is there without me. This is any parents greatest fear, but it is worse when your child has language issues and when he has trouble reading social cues. There are always pieces missing that make it impossible see the whole picture.

Ren and I have spent hours working with the school and Sky's teachers to make sure that they understand his challenges and have some concrete interventions in place when he is having a rough day. Sometimes the interventions don't work. Sometimes it's annoying as hell to have him in class. I get that. But, it doesn't change the fact that Sky's issues are real, they are persistent, and they will continue to challenge us for many years to come. He will make progress. And he will regress. This is how it goes. Life with a kid on the spectrum is the most brutal of marathons. No matter how spent we feel and no matter how shredded our muscles get, we still have to get up each morning and run the race again.

I have no choice but to deal with what I saw yesterday. To talk to the principal, the special ed consultant, and his teacher. Don't worry, I will say what needs to be said. I just wish, for once, that someone in the room could actually grasp what it is like to live with and fight for a kid on the spectrum every. single. day. Just once (tomorrow would be fine), I'd like to wake up and not have to fight some version of this very same battle.

***

Schoolhouse Blues (part 1) is here. More about Sky and school here and here.

Friday, November 11, 2011

The Things I Think about When I Just Can't Sleep

You remember my post about my multiple mom fails the first year of Pink P's life when we found ourselves in Japan? Well, it turns out that I didn't fail in one important way--I got her immunized on the Japanese schedule. Besides that big, bad BCG shot, the rest were uneventful. First of all, there were fewer of them. Second, they were spread out. She was never given more than one immunization at a time. This means that I had a hard time keeping up with all of them, especially since I wasn't terribly familiar with the Japanese names for all of the vaccines, but it was a sane, safe schedule. If I have learned anything from being a mom in two different countries, it's that much of what seems to be common sense is learned and largely subjective. Once you realize this, it's hard to accept most anything at face value.

Recently, I've been following the story of the regression of my friend's son (who has been diagnosed with PDD-NOS like Sky) following his flu shots and a round of antibiotics. So now I am learning a lot about how certain foods and chemicals can affect kids with autism. It's a vast and scary subject, but with one kid on the spectrum and another with allergies and asthma, it's time to take a closer look. Since we are a family that travels a lot internationally, going vaccine-free is probably not an option for Stow, but we will proceed with extreme caution.

Anyone with an ASD kid knows how hard it is to maintain the delicate balance that enables our kids to make it through the day (even for the "lucky" ones like us who have kids that function fairly well in the neurotypical world). During the past eleven months, I've discovered that every mom has a different story to tell about her ASD kid. And what works for one kid may not work for another. Moving forward can be hard. I'm still feeling overwhelmed on a pretty regular basis and try to keep reminding myself that it's okay to take baby steps as long as we keep moving forward.

So, now that we are making progress with speech, OT and social skills groups, it's time to tackle the question of diet and possible biomedical connections. Maybe there's nothing there, but it can't hurt to look.

Baby steps. Baby steps.

Tuesday, November 8, 2011

A Day in the Life

Thanks to SRMM for inspiring this post. She wrote "What I Did All Damn Day" in response to the condescending question often asked of SAHM's: "What do you do all day?" I work, so I don't get that question, but there are those out there that assume that working moms are somehow not really moms. So, here's a day in my life.

12, 2 and 4 a.m. Pink P wanders into our room and has to be reminded to go back to her own bed. At some point, she ends up sleeping on the green glider I sit in to feed the baby.

3 a.m. (though, thankfully, not every night!) Stow cries. Ren gets him out of bed and changes his diaper. I kick Pink P out of the glider and then stumble to the bathroom before settling in to a 20-minute feeding session.

5 a.m. Sky asks me if it's time to wake up. "Read in your bed," I mumble before drifting off for about 30 more minutes of sleep.

5:45 a.m. Up and in the shower. During the 15 minutes it takes me to shower and dry my hair, I am interrupted approximately five times. At least one of these times (though often this happens way more than once), Pink P comes in crying because Sky has picked on her. Throughout my shower, I hear a cacophony of crying, laughing, and yelling (mostly by Ren who attempts to herd the cats while I am busy). This happens every morning.

6:00 a.m Time to get the kids started on their morning routine. Pink P loves to choose her clothes, so she quickly picks out an awesome combination of stripes and hearts and gets herself dressed. Sky, who has already been awake for hours, has trouble pulling himself away from the Lego Star Wars book. Eventually, I coax him into getting dress, making his bed, and spending 15 minutes in his therapeutic sling swing before heading to breakfast. This was virtually impossible before we made a visual schedule, but these days, most mornings go fine-- that is except when they don't. Then all hell breaks loose.

6:30 a.m. Making breakfast and lunch. Fortunately, Ren helps with this part. He usually washes and cuts all the fruit that we need for breakfast and lunch. He also gets the older two started eating while I finish getting dressed and gathering my stuff for the day. He will sometimes also start making lunches, which is why I love him so much. On the days the kids take "Japanese lunch," there are rice balls, various vegetables, cute fruit, and some kind of meat involved. On non-Japanese lunch days, the bar is lowered considerably. As you can imagine, I ♥ non-Japanese lunch days!

Sky and Pink P usually bring out the worst in each other over breakfast. Fortunately, I've pretty much devised a way to keep them apart. Pink P eats while Sky swings, and Sky eats quickly, so he can get back to his Lego book. Pink P, on the other hand, take approximately two hours to eat. This also means, fortunately, that they don't have much time to play together.

7:00 a.m. While Sky plays upstairs, Pink P finally finishes eating and gets her nebulizer treatment (administered by Ren). Meanwhile, I dress and feed Stow.

7:30 a.m. Shoes and jackets on, bags in hand, we head out the door.

7:45 a.m. First drop off: Pink P. She refuses to let got of my leg when I attempt to leave her there. She loves her preschool, but she does this every morning just the same.

8:00 a.m. Second drop off: Sky. We have to get there right at 8. If he's to early, he has to go into the cafeteria (a.k.a "a special ring of hell for kids with sensory issues") to wait. If he's too late, there are too many other kids creating too much chaos, and he panics (which means I get to go in with him). As we pull into the parking lot, Sky packs his backpack with three 2-pound weights. This is our transitional activity meant to get him focused on walking into school calmly and quietly. The weights are for added compression, for more calming.

8:15 a.m. Arrive at work. Phew!

8:15 a.m. to 4:30 p.m. "Work" (because all that stuff I did up until now was something else). Today was a good day, so no calls from school, no trips to the doctor, and no crying college students or crazy e-mails.

4:30 p.m. Get home. As soon as I step in the door, it's time to feed the baby. I feed Stow and then start the evening routine. First, I check Sky's homework and start making dinner. While I make dinner, Ren gives Sky and Pink P their baths. None of this is easy. It involves screaming, resistance, and a lot of repetitive noises. It also involves slathering Pink P with greasy eczema cream which she proceeds to deposit on furniture throughout the house.

5:45 p.m. Dinner. Sky hums. We remind him to stop. He hums. We remind him to stop. He hums. We remind him to stop. He hums. We give up.

At some point during the meal, Pink P finds a reason to cry. Her crying triggers a near meltdown in Sky, who manages to grab his sound dampening headphones and flee the room before Pink P hits hyper-pitch. Eventually, Pink P is appeased (like always, this requires two princess bandaids) and Sky is lured back to the table with promises of a piece of Halloween candy.

6:45 p.m. Start brushing teeth and pushing the kids toward bed. If Sky stays up too much past 7:00, he's a wreck the next day, so the goal is to have teeth brushed, stories read, sheets tucked, and kids asleep by 7:15. Since Pink P is a night owl, this is not always easy. Fortunately, lately she's taken to reading in bed. Once the older two are in bed, we finish cleaning up from dinner and give Stow his bath. He eats again and goes down for the night around 8:30.

8:30 p.m. Start dissertation revisions, check blog, chat with online friends. For the next three or four hours, I attempt to make progress on chapter edits, grade papers, and begin prepping my classes for the next day. I also stare into space. A lot.

12:00 a.m. I realize I am not getting anything done and go to bed.

My daily schedule does not include the trying hours between 12:30 p.m. and 4:30 p.m., when first Ren picks up Pink P (at 12:30) and then Sky (at 3). The last 90 minutes before I get home are apparently the worst since both kids are tired and more prone to tormenting each other. Don't get me wrong. They love each other. Unfortunately, that love is currently expressed in less-than-lovely ways. Not only does Ren keep everyone alive and injury-free until I get home, he also does all of the laundry and cleaning, and most of the grocery shopping.

We survive by strict adherence to our schedule. Any deviance can be catastrophic. Therapy days, sick days, school holidays-- all of these are more challenging. Still, somehow we manage to get through and start anew every morning.

(As I was writing this, it occurred to me that every mom I know tells some version of this story, and I am reminded of the oh-so-catchy tune: "Weebles wobble but they don't fall down..." There. Now it's stuck in your head, too.)

Monday, October 31, 2011

Speechless

Okay, so I am not sure how to write this post without seeming either ungrateful or like I am bragging. See, my kids, being both Asian and Caucasian, tend to attract attention. In Japan, people think they look American, and in the US, people think they look Japanese. Since I look at them all the time, I pretty much just think they look like Sky, Pink P, and Stow, but apparently, they are worth starting at. They also seem to elicit unnecessary comments from complete strangers. On a recent airplane trip with Stow, I was reminded of some of the things people say that leave me speechless.

1) He should be a model.
I seriously don't know how to take a comment like this. For some reason random strangers seem to think that both Sky and Stow should be modeling clothes in a catalog somewhere. I suppose I should take this as a compliment, but it actually just feels like a lot of unnecessary pressure. Suddenly I find myself worrying about whether I am wasting their hidden talents by not hiring an agent and ushering them into a bevy of commercials. Then I realize that I probably don't want to be mom to a child star wash out. Somewhere in the middle of these two thoughts, I remember that I will always be a poor academic and for a few brief moments my head is filled with stars and diamonds. In the end, it just reminds me that our culture is obsessed with how we look and not with who we are. And then I feel bad because my kids will never be as perfect as they seem to look. Am I overthinking things? Probably, but it's pretty weird to have someone tell you your kid could be a model. I never have figured out the appropriate response. Is it "Thanks," or should I say, "Will you be his agent?"

2) What a well-behaved baby!
Again, a compliment surrounded by all sorts of land mines. This one implies that I have some sort of control over how my baby is going to act. Since I don't, I can't even accept the compliment in good conscience. And since my mom always told me to be a gracious recipient of kind words, I am usually flummoxed when I try to think of a way to respond. Do I tell the complete stranger the baby's entire sleeping and eating history so that they realize he's well-behaved because he is currently content, or do I pretend I don't hear and walk away?

As parents, it doesn't take long to figure out that we really have very little control over the behavior of our children. Sure, we can discipline them and train them to behave appropriately in various situations, but they are still (and always will be) individuals with their own ideas about how things should go. This is of course much more obvious to those of us with kids on the spectrum. I'm pretty much thankful on a minute-by-minute basis when any of the kids are behaving appropriately, so I'd rather believe that others are not watching and judging me like that.

3) Where is he from?
More than once I have had complete strangers inquire about the origins of my children. The first time I got the question, I couldn't figure out what the woman meant. Apparently, a white woman with a less white, slightly Asian-looking child tricks people into thinking the child has been adopted from a foreign country. I'm not sure how or why this is the first, most logical conclusion, but then again, we've already established that people will ask dumb questions when they can't quite figure out what they are seeing. Each time I get a question about where my kids are from, I have to resist the urge to explain the birds and the bees. I also have to throw the emergency brake on my sarcasm because I can think of all sorts of awesome responses to that question that should not be uttered in public.

Monday, October 24, 2011

The Conversations We Have at Our House

This is the conversation we had at dinner last night:

Ren: (in Japanese and then self-translated into English) This has baby bamboo in it. (take no ko = child of bamboo)
Sky: (Mortified) We're eating bamboo babies?
Mom on the Edge: (to Dad in effort to calm Sky) In English, they're called 'bamboo shoots.'
Pink P: Why do people shoot bamboo? Won't they hit the panda bears?

This got me thinking about some of the other odd conversations we've had lately, so I thought I'd post a few.
___________________________________________________

As he left me to board a plane to Japan this summer, meaning we'd be apart for several weeks, Sky: "Mommy, my spit makes my throat numb. And, it tastes like greens." (Since we're not from the south, I wondered if he knew what "greens" were. He did.)

***

My first conversation of the day:


Pink: [Bang, bang, bang!] "Mommy, open the door!"
Me: "I'm in the shower, what is it?"
Pink: [Bang, bang, bang, bang!] "Mommy, hurry!"
Me: "Honey, what is it?"
Pink: "I think my bed is too small."

***

Sky, reflecting on the big questions in life: "I just don't know if I believe in Jesus (pause) or Santa (pause) or Curious George (pause pause pause). Wait, Curious George is a cartoon so I KNOW he's not real..."

***

Sky has a tendency to wake up super early. This gives him time to think about things. Here are some examples of the first words I have heard, usually at about 5 a.m.:

"My spine is useless."
or
"You should really wear more dresses."
or
"Mommy, I don't have a girlfriend."
or
‎"Mommy, did you know that a toilet is a type of chair? It's a type of chair that has a hole in it..."

***

A typical response to any new haircut I get:


Sky: "I liked your old hair".
Pink P: "Mommy, you're not a BOY."
Ren: "Did you MEAN to do that?"

(Pink P was relentless. On day two she asked why I didn't put it back on in the shower, and on day three she declared I was her "best boy!")

***

After explaining to Sky (upon being questioned) that I don't wear skirts because I have always been a tomboy and prefer pants, and after explaining, against my better judgment, what a tomboy was, he said (exactly what I expected him to say): "Then I'm a tomgirl--I like doing girl things and boy things."

***

Pink P: Knock, knock
Me: Who's there?
Pink P: Strawberry Pink P because you eat them!

***


Excerpt from a conversation on the way *home* from school (after a call from the school nurse):
"We both threw up on the same table. Ryan threw up first, but I threw up more!"

***

‎"Mom, Pink P doesn't know anything. She doesn't even know what 'alliteration' means!"

***

Sky, as we are walking out the door to school, "When I grow up, I want to own a store that sells hats, gloves, and sweater pants."

***

Sky: Dad have you ever seen a rainbow?
Ren: Yes, I walked on top of one once.
Sky: (after a brief pause to consider this) No you didn't! Rainbows are made from water and sunlight. You'd fall through. Only angels walk on rainbows because they have wings.

***

"Mom, boys have pennies and girls don't."

***

"Mom, first there were dinosaurs and then people. What do you think will come when people are gone: robots or aliens?"

____________________________________________________

There are all sorts of reasons communication is challenging at our house. There's the bilingual thing, the pragmatic language thing and the verbal processing thing. Still, it makes for some pretty interesting conversations!

Monday, October 17, 2011

Signs and Signification

Now that we've moved, one conversation will no longer be necessary. I will no longer have to find a painless way to explain why our pumpkin got smashed.

The last time we carved a pumpkin, due to our proximity to campus, it made it exactly one day before some drunk college students smashed it.


(How could anyone be aggressive toward such a happy looking pumpkin?)

The cruelty of the smashed pumpkin was that it was not missing. In fact, it was smashed in the road in front of our house. If it'd been missing, I could have told Sky an awesome story about how it came to life and set out for grand adventures. But, since its crushed face could clearly be spotted at the foot of our drive way (a fact I did not realize until we were driving past it on the way to school), I couldn't come up with a good explanation. The conversation went something like this:

Me: "Oh, Honey, it looks like someone did something mean to our pumpkin."
Sky: "What, Mommy?"
Me: "I said, it looks like someone did something mean to our pumpkin."
Sky: (Slight pause). "Nuh-uh, Mommy. A bird knocked it off the deck, a squirrel pushed it across the yard, and a cat bumped it into the street. Then it got run over by a car."

Well, duh. Why didn't I think of that?

Unfortunately, the move has not eliminated our recurring conversation about the threat of falling meteors. Our old house was 2 1/2 blocks away from the nearest sign that looks like this.


So, whenever Sky began to panic about the imminent doom predicted by the neighborhood watch sign, I told him not to worry since we didn't live on the same street as the sign. Clearly, I argued, this meant that we were safe from all space debris.

Alas, in our new house, Sky can see one of these signs from his bedroom window. Fortunately, recently he has started to read, so now he believes me when I tell him the signs have nothing to do with meteor showers. I think I'm going to miss the Sky that believed we lived in the middle of a meteor shower zone. That's a whole lot more fun than worrying about stupid criminals and pumpkin smashers.

+++++++++++++++

I've always kind of liked this sign.


I mean, who doesn't hate an inconsiderate trumpet player?

(Okay, okay. I know this is a "no honking" sign commonly found in China, but it's much more fun to think someone really has a grudge against trumpets).

Tuesday, October 11, 2011

The Best Offense is a Good Defense...

The most fascinating thing happened. I went to a case conference at Sky's school, and everyone agreed. We agreed that even though Sky performs at or above grade level, he has enough PDD-NOS funkiness to warrant special education support. We agreed that Sky needs OT support. That he should get speech therapy at school, and that he needs a social skills group, which he can also get at school.

I'm not convinced that I haven't slipped into an alternate reality. Because, you know what else? Not one of the 10 people at that meeting said anything even remotely crazy or unexpected. Believe me, I double checked just to be sure. Plus, Stow sat peacefully on Ren's lap and smiled and/or slept through the entire thing.

Our last meeting with part of the case conference group was literally a week after Stow was born, and ever since we have been employing the cute-baby defense. Now that he smiles non-stop (except when he's sleeping--that'd get a little creepy after awhile), it's particularly effective. He grins. He coos. And no one has the heart to be a jerk. Whatever it takes, people, whatever it takes.

For the record, it only took 9 months since the diagnosis to get to this point (and 14 months since we decided to get Sky evaluated). The word perseverance has taken on a whole new meaning.

Related Posts: Accidental Advocate Redux, Is it Okay to Laugh Now?

Thursday, September 29, 2011

Is It Okay to Laugh Now? No? How About Now?

Oh. My. Gosh. I just had the biggest and most totally inappropriate laugh. A copy of the "multidisciplinary team report" and notice of findings from evaluations done on Sky by specialists in the community school system arrived today in advance of our case conference meeting. You'll remember it took exactly three tries to convince them to evaluate him at all (I wrote about this here, here and here), so I have been super curious to see the results of their observations.

They essentially determined what we already knew which is that Sky is borderline Asperger's (supporting his PDD-NOS diagnosis). They also found that he is average to above average academically but that he requires support for social and behavioral issues stemming from his problems with pragmatic language and sensory integration. As such, they agree that he requires special education support. It will be interesting to see what that means in practice. I've been told not to expect much.

But this post is not about that. It's about the good (and totally inappropriate) laugh I had when I read the report.

Part of the report gave detailed descriptions from classroom observations of Sky. The report is brilliantly descriptive and made my love of Sky's teacher increase exponentially. The observing psychologist wrote:

During classroom time, Sky was observed to be very fidgety, and had difficulty remaining in his chair, was loud at times, and was often off task...He tapped or swung his feet back and forth, rocked back and forth in his chair, and, at one point, jumped out of his chair and ran around it while the teacher was instructing the class. He blurted out questions and comments, interrupted others, and made various noises. He played with objects in his desk, sometimes engaging in fantasy play. His fantasy play included various actions and noises including hand movements and rather loud sounds of "explosions" with the "explosions" occurring while the teacher was instructing the class. While Sky was very fidgety, had difficulty remaining in his chair, was noisy at times, and engaged in some obviously inappropriate behaviors, he did participate in the lesson being presented by volunteering to answer questions, and did complete his work as assigned when given a worksheet to complete. His writing was neat and his teacher complimented him on his work.

I know. Right? He totally did a Chinese fire drill in the middle of class. Who doesn't have the urge to do that some time? Seriously, though, his teacher rocks. She has not once expressed exasperation with him and what is clearly disruptive behavior from him. Instead, she constantly reminds and redirects him and keeps the school experience positive enough that he is able to enjoy school, do his school work, and do it well. Later in the report, the observer notes that Sky's fidgeting and noises don't seem to bother the other students. Also pretty amazing, right? Somehow, his teacher and his classmates have learned to accept him for who he is.

My favorite part of the report described how Sky misheard the name of the lead investigator (Mr. Elliott) and thought the teacher called him an idiot. According to the report, he exclaimed, "That's a bad word!" before his teacher explained that it was merely someone's name. I don't remember where Sky picked up the work "idiot" (though I guess it was probably from the summer in Japan when the only English channel we could get was Cartoon Network--Blast you, Cartoon Network!), but ever since he's known the word, he has mispronounced it. Elliott, idiot. Idiot, Elliott. Totally sounds the same to him.

And so, reading the report reminded me of all of the awesome and totally aggravating things about my son. And it reminded that a lot of that which is aggravating is also that which is awesome. Most importantly, though, the report assured me that, for now at least, he's in pretty good hands at school.

Related posts: Accidental Advocate Redux, The Best Offense is a Good Defense

Monday, September 26, 2011

Halloween is Coming, Panic!

"Pink P, what do you want to be for Halloween?"
"A pink princess ballerina."
"Are you sure you don't want to be a monkey or a dragon, or maybe a doctor or a professor?" I ask, hoping that a) she will agree to make use of one of the costumes we already have, and b) choose to be something a little more self-sufficient.
"Ballerina. Princess."
(Sigh).

Sky was a frog, a samurai, a dragon, a doctor, a SWAT team member. In fact, we avoided being a superhero of any kind until last year when I found a Bumble Bee costume on sale. Last year, I have to admit, Pink P was a princess. That costume was on sale, too. Yes, all of my parenting ideals swiftly crumble at the sight of a sale. But that's beside the point. This year, my resolve is in tact, and I'm desperate to have Pink P dress like something a little more respectable than a pink princess ballerina. The problem is, I don't know how to pull it off.

+++++++++++++++++


It has never been easy to costume Pink P. Her first Halloween, we were in Tokyo. Even by American standards, Pink P was big for her age, so she was downright monstrous in Japan. I looked everywhere for a cute costume for her. Baby costumes are adorable, after all, so I looked for something, anything like what you see in the Pottery Barn Kids catalog. Maybe she could go as a lady bug, or a bumble bee, or a banana, or peas in a pod. Or maybe she could be a baby lion or a puppy dog. I looked, and looked, and looked. In the end, I swear, all I could find that fit was a Mike Wazowski costume in Japanese 3T size.

+++++++++++++++++

That year, the only trick-or-treating opportunities were in the ex-pat communities of Minato-ku. So, we dressed the kids up and took the train across town. Baby Mike Wazowski, Dr. Sky, Ren and I boarded the train in Ikebukuro and settled in for our 20 minute ride. Because Pink P traveled by stroller, the full effect of her costume was lost on the casual observer. But people stared at Sky. Not just the occasional second glance or lone starer to which we'd become accustomed after several months in Japan, but a train-full of downright staring. "Wow," I thought, "they must really dig the kids' costumes. I did a great job." (I'm never one to miss a chance at self-congratulations, particularly when the task required even the slightest bit of creativity.)

As we got closer to Minato-ku, the staring got less and less. I didn't piece things together until the ride back, though. This time the phenomenon occurred in reverse. When we got on the train, no one gave us the time of day, but by the time we were two or three stops from our destination, everyone was looking at Sky. Finally, an older woman leaned over to me and said, "Did you know your son looks an awful lot like a doctor?"

Sunday, September 25, 2011

What Worrying Gets You

Three weeks ago, we had no inkling that we would be moving. Today, we are living in a new house and entirely unpacked. I was proud of the fact we unpacked so quickly (in less than 3 days) until I realized we'd done it by working for more than 40 hours straight. It's hard to be proud of such unhealthy working conditions, especially when they are self imposed.

You remember my post 2 1/2 months ago about my lead paint fears. Every window in the house had serious issues with chipping lead paint. And while Sky and Pink P's lead tests showed they had normal levels, I couldn't imagine having Stow learn to crawl and walk in a house with known lead issues. So, I requested that the windows be repainted.

The thing is that all that landlords of older houses are required to do is provide a pamphlet that acknowledges that houses built before 1978 could have lead paint issues. If there is no "known" issue with lead paint, they don't have to do anything about it. So when I got the pamphlet upon move in, I swear the only thing I consciously took away from it was that I shouldn't let my kids chew on the window sills. You know, just in case. But as the chipping got worse, I was reminded of the pamphlet and dug it out of the bottom of some drawer. This time, I took a bit more away from my reading of it. Namely, my kids were at high risk for lead poisoning due to the poor conditions of the windows.

So I made a repair request, and we waited. And waited. And waited. Soon it became clear that the problem wasn't going to be fixed any time soon. Classes started, and still no hint as to when or how the windows would be fixed. In the meantime, I ran into a colleague who said he'd be willing to rent his recently vacated house. I told our landlord that we could move if they paid for it, and before I knew it, we were out of one lease and into another.

We didn't pack our first box until Thursday evening, and by Saturday, all of our stuff was in the new digs. By Tuesday morning, it was all unpacked. It must be a record of some kind, but I wasn't really going for that. I just didn't see any other way to manage a major life change in the middle of the semester. Sky does not handle transitions or chaos well. So, it has been a rough week, but not nearly as bad as it could have been if we'd taken any longer to move.

Late at night, somewhere the middle of our 40-hour unpacking marathon, a sleep-deprived, sore-backed Ren snapped, "I wasn't the one who wanted to move!" implying that somehow I did. That I had gotten us into this mess. Of course, I didn't want to move any more than he did (though he does end up doing more of the work when we move), but his statement forced me to wonder, yet again, whether I had let my uncanny ability to obsessively worry about certain things make life more difficult than it needed to be. Maybe it did. Then again, maybe my anxieties were right on in this case. I'll never know, but I guess I'd rather risk being wrong.

*****

Of course, the worst thing about moving is dealing with Comcast (After our initial move here two years ago, it took nearly 20 hours of phone time to get them to give us the correct services at the agreed-upon rates. Twenty hours!) This time around, 10 hours on the phone and 8 days later, and our phone, TV, and internet are still not up and running correctly. Speaking of which...I'd better go call Comcast. Sigh.

Friday, September 16, 2011

Moving, In Haiku

In "celebration" of yet another move, a few haiku:

Every single dish
Packed away except for two
Broken by movers


Looking at boxes
Maybe we don't need this crap
Then no unpacking


The fourth or fifth move
Each one we swore was the last
So sick of moving

Okay, so these aren't great but all our junk is in boxes, the kids are insane, and the movers seem incompetent. Plus, t-minus six hours before our Internet is disconnected (and who knows when it'll be up again). Not bad given the duress. Actually, I'm pretty proud I'm still coherent at all. See you all on the flip side!

Tuesday, September 13, 2011

The Absolutely Awesome Red Letter Day

Today was what Ren and I like to call a "super saiko" day. The "super" is English for, well, "super," and the "saiko" is the Japanese for "awesome" or some such sentiment. Super saiko days are usually anything but. Hence, we have a special name for them.

Actually, most of today went well. Snag-free, in fact, all the way until bath time. At bath time, things started to fall apart. That's when Sky discovered the first candy wrapper. See, Sky likes to save his candy. In fact, we have candy from last Halloween, last Christmas and last Easter, not to mention from just about every birthday party he went to for the past year. Sky's stash migrates. And it is broken into separate groups for quick relocation. If it couldn't be relocated quickly and often, it would be long gone since ninja-like stealth-girl Pink P can find anything anywhere. Remember my post about gum or the one about her early morning hijinks? The girl can pull of the crime of the century before your eyes, and you would never notice because of her disarming smile and angelic giggle.

Today, at bath time, it gradually became clear that Pink P had located and consumed the stash. Sky uncovered the evidence as he was getting his change of clothes ready. First it was a Tootsie Pop wrapper and some shredded Starburst paper. I confronted Pink P who was in the tub, and she admitted to eating the candy I asked about. It didn't take long, though, for Sky to realize that all of his candy was gone.

Once busted, Pink P, who continued to play innocently in the bath, confessed to hiding the rest of the candy under her pillow. Sure enough, there we found three half-eaten suckers and a ring pop. This meant some unpleasant "consequences" for Pink P who was soon crying uncontrollably. Excessive crying on top of excessive candy consumption led to the inevitable vomiting. Pink P was nice enough to do this when I left the room briefly to tend to Sky who was in full meltdown mode triggered by the discovery of his half-eaten ring pop. (In case you're wondering, Ren was making dinner and taking care of the baby while all this was going on--who ever said caring for three kids was like zone defense obviously doesn't live at my house). "I threw up, Mommy," she said calmly when I walked back into the room. Drat. There's nothing quite like trying to fish vomit chunks out of bath water so they don't clog the drain. Nothing.

Once she was out of the bath and Sky'd been pacified by the promise of a trip out for ice cream later, I broke the news to Pink P that she would be going to bed without dinner since she'd eaten quite a bit already and clearly her stomach was out of sorts. Plus, I was hoping the old-fashioned being-sent-to-bed-without-dinner trick might finally break her of her ninja-like habits. Unfortunately, this news was met with another crying fit. Which led to an asthma attack.

Really.

So I had to let her out of her room for a breathing treatment.

I refused to lose my ground entirely, though. I made sure Pink P knew that Sky's special ice cream trip was to make up for his lost candy. Finally seeming to grasp the gravity of her situation, Pink P faced her punishment with dignity and even saw us off when we left for our ice cream outing.

In the car, enjoying the first peace and quiet for hours, my zen-like moment was interrupted with a question from Sky: "Mom," he said, "when your tummy is feeling better from your baby surgery, do you think you could exercise a bit? I don't mean a lot. Just enough so you can be a little skinny."

Sigh. So much for enjoying my ice cream...

Top 10 Signs You'll Never Be a Japanese Housewife

10. You can't sew. Therefore, you can't make all of the fancy-schmancy things for school like the lunch box bag, the tea cup bag, the shoe bag, the book bag, the PE uniform bag, the luncheon mat, the sweet little book marks, and the notebook covers. You also can't turn your son's smock into a work of art inspired by Monet. Why? Because you can't sew.

9. You think your kids will probably survive just fine, even if you don't make them gargle with iodine every single day.

8. You don't feel compelled to make cute animals out of the various foods you put in your son's lunch. Rabbit apple slices. Lion mini sausages. Hello Kitty carrots. You can live without creating these things.

7. You think your kids will do okay in kindergarten despite the fact you don't take them to after-school lessons in math, calligraphy, and English (ha! at least you've got them all beat on the English thing!)

6. During the long weeks of the rainy season, you've been known to take your laundry to the laundry mat to dry it.

5. You're pretty sure your husband can get his own beer/tea/coffee, and you're not afraid to make him try.

4. You don't think of an apron as an everyday article of clothing. In fact, you don't feel at all self-conscious doing all sorts of work inside and outside the home without one on.

3. You microwave at least some part of some meal once a day.

2. You don't think the occasional carbonated drink will melt your kids' bones and put them on the path to delinquency.

1. You're not Japanese.




(I should add here my usual disclaimer about how all people are different and how stereotypes sometimes--and in this case, definitely--make for better blog entries.)