Monday, December 30, 2013

How to Survive Winter Vacation

The actual title of this post is, "How to Survive Winter Vacation When the Kids are Sick, Your Spouse Can't Walk, and the Temperature is -2 Degrees Fahrenheit at Noon on a Sunny Day," but that seemed too wordy. You get the idea, though. We've been stuck at home a lot this break, and as a slacker mom hoping to turn over a new leaf (what a weird expression, by the way), I've been trying harder to keep the kids active with things that also give them the sensory input they seem to need. A few weeks ago, I posted a blog about the various sensory toys we've accumulated over the past several birthdays and Christmases. You can read that post here.

We're great about equipping them with sensory tools, but Ren and I aren't good with messiness. The kids have all sorts of chances to draw and build things, but we've been known to avoid activities that might stick to the floor or stain the carpet. This break, however, after realizing how much the kids love to play in sand and snow, and being reminded (repeatedly) by Stow's OT that he would really benefit from messy sensory play, I decided it was time to get over my own cleanliness issues.

The first step: Play-Doh. To our credit, we have Play-Doh in the house. We even have some of the doodads used to shape and cut the dough. Granted, these things have been played with a total of five times since we bought them when Sky was in preschool, but that's beside the point. A couple of nights ago I decided to get them out, so the kids could have a Play-Doh fest while I was making dinner. This went remarkably well, actually. They played quietly together for close to an hour--so much better than trying to stir fry while at least one child cries at my hip.

Proof that I let them use Play-Doh. Oh, and we were obviously having a family bad-hair day.
The next day, I decided it was time to try making a couple of sensory bins. A friend brought hers over to play one day, and my kids loved them. The ideas for hers (and therefore mine) came from a blog called No Time for Flash Cards. Check it out if you haven't seen it already.

I decided to make a Princess Bin (link) and a Construction Bin (link). First, I bought a couple of 15-liter clear plastic boxes with lids on sale for $3 each. Smaller ones might have been a little better for Stow's short arms, but I wanted to contain the mess. (To compensate for the higher sides of the boxes I just have him stand on a chair so he can reach over the edge.) Sky and I bought corks, paint stirrers, clothes pins, multi-colored sequins, princess buttons, pom-poms, and a container of beads at the craft store. Next we went to the grocery store where we bought a bag each of pinto beans, black-eyed peas, and white rice. Finally, we stopped at the dollar store and bought a small dump truck. Altogether, we spent about $35.

At home, Pink helped me put the bins together.


The construction bin. I'm still hoping to find a small power shovel car for this. The yellow beads are from a mixed assortment.
Big Sis likes this almost as much as Stow (maybe more).

The princess bin. The scooping cup and spoon are leftovers from Pink's birthday party. Sky and I found a set of six princess buttons (a castle, a carriage, a glass slipper, a horse, a dress, and a tiara) that Pink loves to dig for. Clear beveled beads are great "diamonds."

By dinner time, the bins had gotten several hours of play from multiple children. Not a bad investment. Best of all, the kids know how to clean up after themselves, so there was no mess.


Maybe hands on sensory play isn't so bad after all.

UPDATE:

Two days later, I decided to try a couple of more sensory bins. The Arctic Ice bin seemed like a good match for the freezing temperatures here in the upper Midwest (click this link to the original post on No Time for Flashcards). We already had the Arctic Toob from Safari Ltd, so that was a bonus. To make this bin, I put water in my large cake pan, added a small bowl full of marbles (to weigh it down), and then placed the whole things on our back porch for three hours. Not only did the water freeze, but the snow accumulation on my pan of ice increased the realism for sure. The ice was good for well over an hour, and once the whole thing started to melt, Stow enjoyed blowing bubbles in the cold water (brrrr!).

Before the snow melted.

Another 45 minutes of group play with no crying or fighting.

Close up.

Stow experiments with freezing water (and ends up with a wet face).

Keeping with the winter theme (since it's minus degrees outside today and snowing again), the last bin I made is a Winter Sensory Bin (link). We have plenty of packing peanuts around! We added snow flakes, blue pom poms, ribbon, clear pebble-shaped marbles, and penguins. The older two liked using the clothes pins to pick things up and even racing to see who could pick up the most. Stow got a bit frustrated trying to master this skill that is still a bit beyond his years, but he liked burying the penguins in the "snow."
Trying to master the clothes pin.

Materials.


Close-up of Winter bin.
Ren thinks I may be going a bit overboard with four bins in less than a week, but since I plan to rotate them, the kids shouldn't get bored any time soon. For now anyway, Stow is giddy every single time he sees the construction bin, and Pink can't get enough of the princess bin.

After I make a fairy one, I promise I'm done for awhile.

FINAL UPDATE, ONE DAY LATER...

Because, duh, I told you I was going to make a fairy bin. This one I came up with on my own. It has butterfly sequins, flower buttons, feathers, beads from my bead assortment, and the same sticks and corks I used in the construction bin. It also has two bowls to serve as fairy huts and blue rocks to serve as a pond. I decided to avoid using pasta due to gluten issues. I've discovered the kids prefer hard smooth things to soft, fluffy things, so I decided to go with all white beans (lima beans and great northern beans) instead of cotton balls, which was my original plan.

Pink P immediately constructed a gate to a secret garden.
Building a secret garden. And then a doctor's office and a nursery for the baby.

Fairies from the Fairy and Fantasy Toob. Probably not worth the $8 I spent on them. Pink P is a tad freaked out by the baby fairy.

All the materials.


So, I'm pretty sure that's it. I've tapped the extent of my creativity. At least we have a few bins to keep them busy!

Sunday, December 22, 2013

The Talk. Yes, That Talk*

It all started with DNA (as most things do, I suppose). Sky wanted to know how he is related to various members of our family--not what the relationship is but how much DNA he theoretically shares with them. Though odd, this seemed like a safe enough conversation.

Soon we were talking about how a baby shares his mom and dad's DNA. And then Sky said,"But that's the part I don't get. How does that happen?"

(Mayday, mayday, help!) As improbable as it seems, I did NOT see that question and the ensuing conversation coming. But once Sky got on the topic, there was no way around it. So I responded vaguely, "Well, when a mommy and daddy love each other and get married, they can have a baby."**

"I don't get it."

(Of course you don't. I was being purposely vague. Crud.)

"Well you know how boys have boy parts and girls have girl parts? When two people get married, their parts fit together and sometimes they make a baby."

"What?" He asked, looking doubtful and slightly incredulous.

Look, I'm not going to give you a play-by-play because, frankly, I didn't do the greatest job explaining things to Sky. I was so desperate to avoid having the conversation, I made it more confusing than it needed to be.

The high/low point was when Sky asked, "Wait, so you mean they take their clothes off? WHY would anyone DO that?"

Other notable moments include when he said, "What if your penis ends up in the wrong place?" and "Can I accidentally make a baby?" Then there was the unfortunate parallel I drew between the truth about Santa and the truth about sex when I was trying to make the point that his classmates probably weren't ready for either truths.

Fortunately, we have a great book about the body. Also, lucky for me, Sky is exceedingly scientific. Once I gave up my resistance, the book made it easy. It showed everything from how an erection occurs to how sperm makes its journey. It also had an in-depth illustrated explanation of fertilization and all that follows.

In the end, I found myself very grateful for my scientific son. Forty harrowing minutes later, the conversation was over and Sky seemed completely satisfied with my explanations.

I, however, was a bit traumatized. So I went to talk to Ren about what had just happened.

"I just explained sex to Sky," I said.

"Why'd you do that?" he asked, without even taking his eyes off the newspaper he was reading. "You could have just told him they come from peaches.***"

It never, ever occurred to me to lie to Sky. But, maybe Ren had a point. Why'd I need to make things so complicated? Maybe Sky didn't really want to know the details. Maybe I'd just traumatized him for life and set him up for a future of delinquency.

Talking to Ren didn't relieve my anxieties at all. So, next I ran Ren's explanation past Sky hoping he'd make me feel better by rolling his eyes and telling me he didn't want to hear a silly old children's story.

Instead, he said, "They do?!?!!"

And that's when I decided I would let Ren handle these things from now on.




* I know I'm paying for my post tricking you all into thinking my talk with him about Santa was THE talk. I'm not sure I like how these things come back around to haunt me...
** Yes, I know there are many other ways that people get babies, but I wanted to start with something he could easily grasp.
*** Search Wikipedia for "Momotaro."

Thursday, December 12, 2013

And Then I Got Reverse Love Bombed


When I got up this morning, Ren handed me this. "Sky said we should open it together."

So, we did. And we were both kind of blown away. It's not our birthdays or mother's/father's day. It's just a regular weekday in December.

Although, not any more.

See, I was really in need of a love bomb, too. The last five months have been so great and so hard. We love our new house, and I really do have the best job. But, moving is hard. Everything takes time. The kids have struggled to settle in. And then, the back surgery.

It's difficult to put into words what it's like to go through multiple major surgeries with a loved one. I mean, it's hard, obviously. Life is turned on its ear--the routines fall apart and the work piles up. By about 15 days post-op, I lose my patience with everyone (and especially Ren). Unfortunately, recovery takes much longer. Days 16 to 160 kind of stink. I feel simultaneously pissed off and guilty for feeling pissed off. I'm pretty sure Ren goes through something similar. He feels guilty for being grumpy and for asking me to do things he used to be able to do for himself. We fight. Because he wants to do more and I don't want him to overdo it even when I really do need the help. I can't face the idea of another back surgery, so my pleas with him to let me take care of things have a certain urgency that he doesn't appreciate. It's all so ridiculous and so understandable and so darn frustrating. So, Sky's timing is pretty impeccable.

Thanks for the love bomb, Buddy! We needed it.

Monday, December 9, 2013

My Christmas Wish: Time for a Love Bomb


As you guys know my 9 year-old son Sky is on the autism spectrum. While his autism is "mild," it impacts every point of contact he has with the world around him--his senses, his understanding of language, and his ability to read social cues. We received his diagnosis three years ago this week, and every year, I try to commemorate what I've come to see as this rebirth in some way. It wasn't as much a rebirth for Sky as it was for Ren and I, because for the first time ever, we could understand why he did the things he did, and we could become much better parents for him. We feel so incredibly blessed by this life we have and especially that this diagnosis has helped us help him.

I started blogging not long after his diagnosis because I was looking for a community of parents who had been through this. Autism can be lonely because there is so much misinformation and missing information, and there really is no handbook for how to get your kid all the things he/she needs. In other words, I started blogging for myself. But then a funny thing happened. Sky took interest in my blog. He wanted to hear the stories I was telling. Then he wanted to tell his own. If you have a chance to look through the archives, you will see him desperately trying to help others understand what it's like to have autism. (The posts under the label "Illustration by Sky" touch on this topic the most).

As many of you know, over the summer, we had to move. We moved away from the occupational and speech therapists who'd worked with Sky for more than two years. We moved away from the small school full of friends who've known him since the first days of his diagnosis and who came to accept him just as he is. And we moved when he was in third grade, just when kids seem to be more aware of the social nuances of life and a lot less forgiving of difference.

The move has been hard for me because I completely lost my network of support and have struggled to locate therapists who can help the way the ones we had before did. But, the move has been harder for Sky. He's not like everyone else. He makes a lot of noises, asks weird questions, misreads social cues, and consistently invades peoples' personal space. Not the best traits for helping the new kid fit in, and he's feeling his "difference" like never before. Every day, he says to me, "Mom, it seems like the kids don't understand what it's like to have autism" or "Mom, I miss my old friends because they 'got' me" or "Don't they know how hard I'm trying?" Last week he told me that he's always picked last for gym (everyone's worst nightmare) and that "it's hard to be friends" with the little girl who lives across the street and who happens to be in his class because "every time I try to talk to her, she walks away." My heart is breaking for him, but more than that, I worry because he is getting discouraged, and he no longer feels confident enough to advocate for himself. He's a smart, kind, and funny kid, but he's losing his voice.

So, my wish is this. I wish you, my readers (and your friends and neighbors, and heck, even complete strangers), would love bomb Sky by reading his old posts (click on the label below) and offering him encouraging feedback. By telling him what he helped you understand about autism, and by encouraging him to write more. Let's help him rediscover his voice and to keep telling his story.

Sunday, December 8, 2013

Me and My Big Ideas

So this week, I had one success and one near catastrophe.

First, the success: I found a great use for the last of Pink P's pull-up boxes.


If things don't get picked up, they go in the box. If the box gets full, it goes to Good Will. Simple and quite effective so far. For the past week, Sky and Pink have consistently checked the box to make sure there's nothing in there. And when they find something, they make sure it gets put away. I assure you they have never been this aware of the stuff they leave on my desk or the floor.

This box idea was going so well, I started to feel pretty good about my parenting skills. But then I inadvertently ended up having "the talk" with Sky, which is kind of funny since I was joking just last week about how "the talk" was about Santa. I guess I paid for THAT joke. And the funniest part is that as I was explaining the birds and the bees to Sky, I somehow made a connection between Santa and sex. I wonder how many hours of therapy that will take to undo?

Actually, the conversation went pretty well, so stay tuned. Once the shock has worn off, if I can figure out a way to recount the conversation coherently, I'll post about it.

Thursday, December 5, 2013

All They Want For Christmas is Something to Bounce On (Or How One Mom Stays Sane)

Last December, I posted pics of some of our favorite toys, so this year, I thought I'd do the same. In particular, though, I want to focus on the things that have made living with kids with SPD (sensory processing disorder) a little easier. Stow and Sky are sensory seekers. They like to crash. A lot. They also like to be squeezed, smooshed (let's pretend that's a word), and rocked. Pink P has an insatiable urge to jump. It's all enough to make a mom a little crazy. (It's also enough to convince a mom that the new house MUST have a separate playroom with plenty of space and a door, but that's another story). So here I present:

MITC's Top 10 Sensory Gift Ideas


1. The Cuddle Swing


I bought this one by Southpaw used on Amazon*** for less than $100. Plus I had a gift card, so there's that. We have it anchored in the ceiling in Sky's room. He likes to sit in it and read. When he's needing some heavy input, he gets in the swing, and I push him by hitting him with a big exercise ball. It sounds barbaric, but it totally calms and reorients him. I have never seen anything quite like it.

2. Spooner


Aside from the unfortunate name, this is a great toy. Stow had a lot of balance issues that came with his low muscle tone, and just having this lying around has encouraged all of the kids to step on it and work on their balance and strength. You can also rock on this which is always soothing for Sky. We use it indoors, so it's perfect for rainy days. Plus, it stores well.

(Spooner from Veach's, one of the best independent toy stores I've ever seen)

3. Bilibo




Ditto everything I said about the Spooner, including the part about its unfortunate name.

(Bilibo from Amazon)

4. Trampoline

We got this for Christmas three years ago when I consistently failed to convince Pink P to stop jumping on the furniture. Since she seemed compelled to jump, I figured it'd be a lot safer for my furniture and my children if we had our own trampoline. The first day we had it, I established four rules which miraculously stuck: 1) only one kid jumps at a time, 2) no toys allowed on the trampoline, 3) hold on, and 4) don't jump on to or off of it.



If a trampoline won't work, kids can also bounce using a balance trainer or one of these desk chairs with an exercise ball in it.




We also still really love our Rody for our littlest sensory seeker.


(Trampoline from Toys R Us, chair and Rody from Amazon)


5. Weighted Blanket


After years of telling myself I was going to make my own weighted blanket and stocking up on dried navy beans when they were on sale, I finally broke down and bought one of these for Sky. I mean, even if I managed to figure out how to sew a blanket in a way that kept the beans properly compartmentalized, there was no way I would be able to wash my navy beans in the washing machine. This blanket is from SensaCalm and is by far the most reasonably-priced one I found. It feels like it weighs a ton, but Sky sleeps peacefully under it. He did mention it was too hot once, but then again, it was summer and besides the weighted blanket, he also had on a fleece blanket, a quilt and a throw.

6. Bean Bag Chairs

Sky's chair.
Stow's chair.
Both Sky and Stow have bean bag chairs in their rooms. The chairs are great for throwing themselves into or getting good deep pressure. They're also a great place for a poorly-regulated kid to vent his frustrations without actually hurting anyone. Moms can enjoy napping on the bean bag chairs when the kids aren't around, or so I've been told.

(Bean bag chairs from Target)

7. Chewies

We've tried all sorts of different chewing gizmos to help Sky with his obvious need for oral input. Without them he spits, blabbers, shrieks, and chews on his shirt sleeves. The problem is that he's also chewed through every chewy we've ever tried.  Like these:

We hooked this one to a lanyard, but he chewed through it.

Even his Z-vibe, which cost more than I wanted to spend, couldn't withstand his chewing. No matter what tip we used, he chewed through it in about a week and ended up swallowing some of the rubber. This made his teacher nervous.


The one that lasted longest was this "chewelry:"
It lasted for several months. The only problem was that he liked to pull on it and flip it like a giant rubber band. He also took it off and swung it over his head like a lasso. For obvious reasons, the other kids did not appreciate being hit by his spit. 

These Jigglers seemed like a good idea for school but the vibration was ridiculously loud! Plus, a boxing kangaroo is never good for a kid who has personal space and social skill issues. I figured it would take approximately 6 1/2 minutes in the school building for Sky to hit a kid with this one.

(Jigglers and Chewies from Sensory University and Amazon)


8. Granola Bars, Celery Sticks, and Gum

Obviously, you can't put celery sticks in their stockings, but for Sky, it turned out that super crunchy foods were the key to dealing with his oral sensory-seeking issues. He also totally digs the way the foods sound when he chews them. Much cheaper and more filling than the chewies. When crunching just doesn't do the trick, I give Sky 5-8 pieces of gum (enough so his mouth is full, but he doesn't choke, obviously). I can't tell you how many stockings and Easter baskets I've filled with granola and gum, but it's a lot. We've also stuffed stockings with various fidgets and vibrating toys like these two:





(Vibrating toy and fidget from Sensory University)

9. Tent


This collapsible tent has been a great "safe space" for Sky when he needs a sensory break or just wants to get away from his little siblings. This Ryan's Room set came with two tents and a tunnel, and every OT we've ever met finds something good to do with the tunnel. (Set from Costco)

10. Crash Pad




This is our most recent discovery/acquisition. When we moved, we got rid of the old hole-filled couch that Sky used for deep pressure and crashing (which I think ended up being more traumatic for me than for him--I wrote about that couch here). I promised him I'd use the money we made from garage sales to get something more appropriate for his needs. This thing is basically a thick nylon square filled with those foam blocks you see in the pit at gymnastics. We got this a couple of months ago and the kids have been running and crashing into it ever since. Since it's 5 ft X 5ft, the size can be an issue, but thanks to the new playroom space it fits. Added bonus? The kids like to practice their gymnastics skills on it. (Amazon)

So that's the list. Some of these things were gifts, most were on sale, and some we just broke down and bought because I couldn't figure out a way to simulate the desired effect. Either way, since the diagnosis, we've been much more intentional about using birthdays and Christmas to get the kids things that help with balance and sensory integration. I don't know if they work or not, but life does seem slightly less chaotic. Plus, I feel better knowing the stuff we are bringing into our lives is working toward a greater good.


*** In fact, I bought most of this stuff on Amazon--what can I say? It's hard to get to the store, plus I'm a fan of free shipping.

Pictures of the chewies and vibrating toys were taken from the following websites:

http://www.beyondplay.com/
http://funandfunction.com/
http://www.nationalautismresources.com/
http://www.sensoryuniversity.com/

All other pictures are mine.

Tuesday, December 3, 2013

The Talk

So, you remember how I was worried about having "the talk" with Sky? You know. The one about Santa.

Wait, what did you think I meant?

Anyway, way back in August, the topic came up again, and I kind of knew this was my chance. After all, we were far enough away from Christmas that he didn't have all of the pent-up nervous energy that begins to build about the end of October as we head into Halloween and strengthens uninterrupted as we go through his birthday, Thanksgiving, Pink P's birthday, and Christmas in quick succession. Invariably, things fall apart for him during that seven-week period, so revealing such big news then wouldn't go well. Plus, I've made it a practice to avoid lying to them about the whole Santa thing, and that's much harder to pull off the more sophisticated their thinking becomes. I didn't know how I was going to get through this Christmas season with Sky without having to do some blatant fib telling.

So, when he looked me in the eye and asked me again whether Santa was real, I closed the door and told him the the whole story. I told him that Daddy and I believe in the spirit of Christmas and want to help them believe in it, too, so that's why we talk about Santa. I asked him to help me keep the magic alive for his sister and brother. He immediately outlined his plans for helping me wrap presents and putting together any toys that need to be built at the last minute.

By far the sweetest, most awesome moment came right after I confirmed his suspicions about Santa. He paused to think and then said, "So you mean YOU got me the Kindle Fire? Thank you sooo much." Then he gave me a huge hug.

And, you know what? He's a lot mellower this year. I think the constant fear that he would end up on the naughty list was just too much for him (remember this post?). He's also been great at keeping the secret from Stow and Pink. In fact, tonight, when I wanted to tell Pink that those ridiculous shelf elves are just a convoluted way to force kids to behave while weaving an impenetrable web of lies, he interrupted me in Japanese and told me I'd better not. Good thing Pink can't spell or speak Japanese well. Next year it will be harder.

*****

In other news, we survived our first Thanksgiving dinner at home. Normally, we are visiting family or in Japan. But this year, since Ren is barely walking, we stayed home. Big Sissy came with a friend, so I felt some pressure to do something resembling a feast. I honestly considered serving pizza for longer than I should admit. None of us like turkey and since most of us don't have a cultural predisposition that insists we eat it on the fourth Thursday in November, we had ham. Ham, tater tots, gluten-free spinach souffle, salad, green beans, and gluten-free brownies. The tater tots were my solution to Sky's new-found aversion to mashed potatoes that resulted from consuming large quantities of them last Thanksgiving and then immediately coming down with a nasty stomach bug. Besides the amazing (and by "amazing" I mean, "I'm amazed I didn't serve pizza") feast, there were also some decorations and even fancy napkins. Next year I'm thinking about breaking out the good dishes--you know, the ones we got for our wedding 14 years ago and have never, ever used. We left for Japan two days after our wedding and subsequently moved a gajillion times. Now that we're finally settled, it might be time to get them out of storage at my parents' house. Given the fact I managed to pull off a meal this Thanksgiving, nice dishes are not out of the realm of possibility for next year.

The day after Thanksgiving, I accidentally went to Kohls and ended up waiting in line for forty minutes. I can't explain it other than to say I don't get a lot of time to shop, so it seemed like a good idea at the time. Before Big Sissy left, I made her help me get all the Christmas stuff out, so now each morning starts with Stow dancing to the various animated singing toys we've accumulated over the years. I've become wholly incapable of writing a coherent post, so I'll distract you with this video of Stow dancing and maybe you won't notice there's no conclusion to this post.


video



Monday, November 25, 2013

Learning to Adapt, 2.0

Today marks three weeks since Ren's last back surgery. It feels a lot like something from Swiss Family Robinson as we stitch together life without all of its parts. Recovery is happening, but it's happening very slowly.

Glacially.

So, we make adjustments, and I try really hard not to lose my schmidt.

Take cleaning, for example. Despite the fact that EVERYONE KNOWS that vacuuming is possibly the worst thing you could do with a bad back, Ren did not. He was crestfallen when the doctor told him  he had to lay off the vacuuming for at least three months. And, the only reason it was mentioned at all is because I specifically asked, "So, can he vacuum after surgery?" The doctor looked at me like I was a complete idiot, but sometimes you have to take one for the team and ask the stupid questions so your spouse will finally realize that YOU CAN'T VACUUM AFTER YOU'VE HAD BACK SURGERY.

I would love to hire a person to help us clean while we are one parent down. Ren, being the parent down, and also the parent stuck at home, would rather not. Now I know some of you will say I should do what I need to do to survive this. But I also have to be able to survive grumpy Ren, and nothing makes him grumpier than back surgery and paying someone to do something he thinks we should do ourselves. So, we both came up with plans. His was to have the kids each vacuum a room using a vacuum their size. Due to his vacuum fetish, we actual have enough properly-sized vacuums to do this.

I don't know if I should admit that.

Action shot -- blurry because obviously I am incompetent.
Mine was to buy a Roomba. Now, while Ren's plan instills in the kids a strong work ethic and a sense of team work. Mine is shinier. And electronic. Plus, it has had the completely unexpected bonus of being the perfect playmate for our  mischievous 2 year-old. Stow can't get enough of it. If he could figure out a way to get it into his crib, I'm pretty sure he'd sleep with it next to his pillow. I have to admit that I get more than a little pleasure watching him chase it around the room, dance with it, and put small toys on it so they can go for a ride. Unfortunately, the Roomba is just about as spastic as Stow, so Ren's plan definitely worked better in terms of actually getting the carpet clean. And it did make the kids slightly more aware of the need to help mom out. So now they also clean the kitchen and help with the laundry. (And, no, I am not, not under any circumstances admitting that Ren was right here. If that's what you took from this story, you've obviously misread. Ooo, look, a cow on a vacuum.)

Sky insisted we name this ibot. Short vowel sound, thank you very much.

The other big adjustment we've made post-surgery is that Stow has started going to daycare. Ren's lifting limit is 20 pounds. He's also not allowed to bend, twist, or squat. None of these restrictions are conducive two wrangling a 30+ pound 2 year-old. Of course, Ren was totally convinced he'd figure out a way to take care of Stow despite the fact he can't walk, and, you know, do anything. I, on the other hand, was totally convinced that if I didn't find some place to put Stow while I work, we'd be headed for another back surgery. Fortunately, there's a great co-op right on campus, and they were kind enough to let Stow come hang out until Ren is further along in his recovery.

Which is awesome. Except it's not.

I mean, I didn't realize I wasn't actually ready to have Stow in daycare until it was too late.  He made it easy for the me the first few days, crying as I walked away, begging me to stay, acting as if he was sorry to see me go. But, by the third day, he was over that. Now he just takes his Shinkansen thermos and his zebra lunch bag and doesn't even give me a second glance.


Stow's first bento.
To drive his point home (you know, the point that he doesn't really need me at all), Stow decided to do two things at daycare he's never done at home. He started using his own name and he started potty training. I'm not going go lie, I'm thrilled to know he actually knows his name. He's been slow on these kinds of things. But the potty training? I think he's just trying to make us look bad. The first day, when I dropped him off at daycare, they asked me if I wanted them to put him on the potty. Sure. Why not? We hadn't really gotten serious about the potty training thing, what with the back surgery and with the fact that Stow had all the urinary tract and digestive problems. But, what the heck? If they wanted to put him on the potty, I certainly wasn't going to stop them. I did not expect Stow to actually USE the potty, though.

Has he no regard for my feelings at all?

Obviously not. He's consistently used the potty at daycare since the very first day. Of course, at home, he screams when I try to take off his pull up and weeps when I put him on the potty. He's totally playing me and then rubbing it in. I mean, he even used the potty for the high school girls who work at the drop-in care place at our local gym. I'm sure he's doing it just to spite me. Or maybe he's mad at me for making him wear Pink P's leftover princess pull ups.

I guess I could see that.***

Action shot.






*** Actually, he loves the princess diapers as much as the "boy" diapers. It just doesn't make for as good of a story.

Sunday, November 10, 2013

Sigh

About a year ago, I wrote a guest post for Rage Against the Minivan (which is a great blog, by the way), and then I kind of forgot about it. It was posted last week, when Ren was still in the hospital. The title was "What I Want You to Know About Having a Child with Austism." In it, I was trying to help people understand the hard parts of having a kid with ASD because, frankly, sometimes it's really hard. If you've been reading this blog at all, you know that life with a kid on the spectrum is also sometimes crazy, sometimes fun, sometimes heartbreaking, sometimes very educational. In other words, having a kid on the spectrum is very cool and it's also very hard. That's what my post was trying to express. You can read it here.

I've been surprised by some of the comments, especially the strong reaction to my use of the word "lucky." Apparently, it's not possible to say someone is lucky without somehow implying that I am unlucky. I guess that makes sense. But, that's not actually what I was trying to say. I was trying to say that people who don't struggle with ASD on a daily basis should realize life is probably easier for them (though, as you can see, this is a much wordier sentiment than saying they're "lucky"). This doesn't mean that I don't think other people struggle or that I don't acknowledge other kinds of diversity and difficulty in the world. Do I wish Sky didn't have ASD? You bet I do. Life is so much harder for him than for his peers. He struggles daily to figure out how to fit in and how to make good choices in a world he doesn't quite get. Do I love him any less? Of course not. I love that kid like crazy and wouldn't change anything about him except for the parts that make life so hard for him. Isn't it possible to have these kinds of complicated and nuanced feelings about life with autism without being self-loathing, un-accepting or un-supportive? I think it is.

One person commenting hoped my son would never see the post. I don't feel that way. Sky knows how much we love him, how much we support him, and how much we all wish ASD didn't negatively impact his life. He also knows we think he's a super hero and that we are extremely proud of his ability and willingness to work hard and to teach others about the good and the bad of being on the autism spectrum.

If you haven't seen it already, please go read that post and tell me how I could have/should have said things differently to make my point.

And then tell me whether you think I should just give up on this whole internet blog thing altogether.


Friday, November 8, 2013

This Totally Made My Day

This is Jack. He's the son/grandson/nephew of old friends of mine. He's also nonverbal and autistic. His parents hadn't heard him produce language unprompted in the more than seven years since he stopped talking (when he was one). Earlier this week, they heard him repeating this phrase and thought it was just gibberish. And, then they listened closer and realized he was singing Katy Perry's "Roar." How awesome is that?


I don't know about you, but Jack has totally made me a Katy Perry fan.

Oh, and if anyone happens to know KP, please introduce her to Jack!

Follow-up 11/15/13:

Jack's story has made it's way to the national news. Still no word from Katy Perry, though.

Click here for the article about Jack on Today.com.

Tuesday, November 5, 2013

Halloween Recap

After two slightly "heavy" posts, I've decided to return to fluff and tell you about our Halloween. You can read my predictions here for background.

So, Sky went to school on Halloween with his Minecraft Creeper shirt on but no costume. Going from Catholic school to public school, he was completely unfamiliar with the Halloween parade. I tried to explain that everyone else would be wearing a costume, but no matter. There was no way he was wearing the costume to school.

The rain made the day much more complicated than it needed to be. Sky and Pink go to school in buildings that share a playground but are in no way connected. So, day-long rain meant the kids wouldn't parade in one long line around the parking lot but in two shorter lines in separate buildings at. Exactly. The. Same. Time.

Perfect.

The parades were both scheduled for 1 p.m. Both kids wanted me there, so I had to figure out how to make that work.  Over breakfast I'd told the kids that I'd go to see Pink first and then Sky, hoping that somehow they'd be staggered.

They weren't.

Despite the fact each school has more than 200 kids, Sky and Pink paraded literally simultaneously. Something I discovered only after I stood in a ridiculously crowded school hallway to watch tens of  preschoolers and kindergarteners shuffle past so I could high-five Pink P before running through the rain to the other building to try to catch Sky. I missed him. But I did see plenty of other kids sporting the same costume he refused to wear. This did nothing to relieve my anxieties about how he was handling Halloween. So, I invited myself to the class party and was deputized as a parent volunteer. When I got there, I encountered a very sullen Sky. Turns out he was anxious about all the forbidden food floating around the room, anxiety no doubt heightened by the fact I'd let him eat a Halloween cupcake at Cub Scouts a few days earlier and he promptly threw it up. After I double checked a few labels and reassured Sky that he could eat some of the stuff, he was much more cheerful.

By the time he got home from school, though, he had 102.5 fever, which probably explains most of his Halloween funk. It also answered the question once and for all of whether he would wear the costume and hit the streets for candy. He opted to keep the cardboard head on after pictures and pass out candies (and no doubt germs -- sorry other moms on our street) to trick-or-treaters. I know I should have banned him to his room, but I didn't have the heart.



As part of the Halloween festivities, we carved our first pumpkin in years. Sky retold the saga of our last pumpkin which amazed me both in its accuracy but also because I didn't realize four years had passed since we last carved a pumpkin. Turns out I was more traumatized by the fate of our last pumpkin than I thought.



Ren hasn't lost his touch. Though this one looks a lot like the kuchisake-onna from Japanese urban legend. Ren claims this was intentional, but I think he may have been trying to figure how to carve such an average-sized pumpkin with such an oversized knife. The kids loved the pumpkin, though. Plus, we have an awesome motion sensor light that makes the pumpkin scream and bark at passers by which meant that most trick-or-treaters didn't have to ring the doorbell because we could hear them scream.

Pink, Stow and I made the candy-gathering rounds in the rain. Neither seemed to mind. Stow acted like an old pro, announcing, "Hi-yo, Tricky, Thank you much!" to anyone who would listen (and even those who wouldn't). When we got home, no one, and I mean no one was going to pry his cold damp candy bag from his hands. Fortunately, all three kids seem to have a very short memory because the candy got put away and no one's asked about it since. Maybe they've just resigned themselves to their destiny of healthy eating.


I love this picture. Somehow this is what it's like to do Halloween at our house.

Monday, November 4, 2013

The Ring

During the first two years of our marriage, Ren lost his wedding band twice. At the time, it seemed so symbolic.

Before I can tell you that story, I need to tell you this: most Japanese men choose not to wear a wedding band. Apparently, they think it seems ostentatious. I'm not sure this is true, but I do know that you won't figure out a man's marital status by looking at his left hand. I also know that, while many Japanese women friends of mine received stunning diamond rings for their engagements, they placed them in safety deposit boxes instead of on their fingers. So, if we really want to talk about symbolism, we have to give Ren props for deciding to wear his wedding band at all--it certainly symbolizes a willingness to be different than the men around him.

Then Ren's wedding band just disappeared. It happened one day about 4 months after our wedding. Ren was mystified and spent the next several days looking for it. I couldn't believe he'd lost it--then again he did have a bit of a habit of losing expensive things (his wallet, his watch, cash), so I could totally believe it. It's hard not to read too much into your spouse losing his wedding band, though. So, I bit my tongue and let him search.

After days of searching, he finally dug it out of the ashes of our fire pit. How he figured out it was there, I'll never know, but when he finally uncovered it, it was totally black, coated with soot. Never have I been so glad we went with the platinum bands instead of gold. Gold would've melted in those flames. Once Ren wiped the band, it looked good as new, maybe even better.

The next time he lost it, we were spending our first winter in the Midwest. For a guy who grew up in southern (western) Japan, the snow was a totally new and somewhat unwelcome phenomenon. The night Ren lost his ring, we had 6 or 8 inches of fresh snow, and as he went to unlock the front door, the ring slipped off his finger and into a snow drift. It melted into the snow so quickly, there was no hope of finding it. Ren had to wait for the thaw to find it under a bush near the front porch.

After that, we had the band re-sized.

Since then, Ren's only taken the ring off three times. Each time has been for a surgery. In the 15 years we've been together, Ren's had six major surgeries: three shoulder, one eye, two back. Since the ring was re-sized, he's had three. Each time, he slips his ring off and hands it to me, and I hold on to it until he's out of surgery and recovered enough to get it back on his hand. There is no fire or ice, but holding his ring feels symbolic just the same. When I'm holding the ring, it feels like we have slipped into a liminal space--we are neither here nor there. We are waiting, wondering how our lives will be altered when the dust settles. I don't like holding the ring, but I know I am the only one who can.

Today, Ren took off his ring for back surgery #3. No telling whether this one will do the trick. We're hoping, at least, that he will regain some mobility.  Only time will tell, but in the meantime I will sit here, wearing his band on my wrist until he's ready to wear it again.

Nothing seems quite right when I'm holding the ring.





Friday, November 1, 2013

How Do I Not Fail at This?

"I don't think I want to do gymnastics today," Sky tells me as we wait for his class to start. Moments before he seemed fine, so I scanned the room to try to figure out what triggered the sudden change of heart. Then I saw William watching from the stands. William who keeps being mean to Sky at school. William who also happens to be Asian. William who has become the bane of my existence.

Of course, I say none of this to Sky, and instead respond, "What's up, Buddy."

"They'll make fun of me," he answers, without filling in the who or what or how. But I know.

Still, I ask, "What do you mean?"

"Well, last time William saw me at gymnastics, he told all the other kids."

"Really? What'd he say?"

"Sky does gymnastics."

Worse things could be said about Sky. Worse things have been said about Sky.

"Well, you do do gymnastics," I say.

"Yeah, but they laughed. And, they're wrong! Boys do gymnastics, even at the Olympics!" By now, Sky's getting fiery. And teary. And it's breaking my heart. But, I don't tell him this.

Instead, I say, "You're right. But, here's the thing: some kids are always going to be mean. And there will always be someone who tries to hurt your feelings. But, you. You are awesome, and you have already done amazing things. Be proud of who you are. You can't let anyone tell you who you should be."

I know he heard me. And understood me. But these are only words. Words from his mom who can't go out into the world with him, who can't really protect him from any of this, who sometimes forgets to be patient, and kind, and understanding.

How do I not fail at this?

At all of this. At helping a son--a son who struggles to fit in, who struggles to understand, and who is so breathtakingly sensitive--to become a confident man. At teaching my daughter not to equate her beauty and self-worth with the style of her clothes, with the color or her hair, and with the number of her friends.

I know this is an uphill battle, so I started early with my constant and not always subtle messaging:

Do what you like.
Be who you are.
Ignore the meanies and choose to be nice.
Embrace your cultural diversity.
Take joy in those things that make you different.

I know they hear these messages, but I can already see it's not really enough. My one single voice grows smaller, more difficult for them to hear, as they are bombarded with messages that tell them who they should be, what they should like, and how they can become popular. How long until my kids can't hear me pounding this drum, telling them they are so much more than any box others will try to put them in?

Oh, that we could change our society so that boys could cry and girls could fight and no one would bat an eyelash. Oh, that their sense of self worth would never be tied to what they are wearing or what sport they play or what grade they got on the last test. We are all, all of us, so much more than the ways our culture tries to define us, but how do our voices drown out the relentless messages that seek to silence us unless we choose to shout together?




Thursday, October 31, 2013

Yay, Halloween!

Eons ago, way back in 2011, I lamented the coming of Halloween in this post.  I suppose I don't really like Halloween because I seem to totally and completely lack the gene that makes me good at coming up with costume ideas.

My costume failings are constantly being exacerbated by the pink princess-loving little girl with an unflappable sense of style who is my middle child. In 2011, she was refusing to wear anything un-princess-y. We managed a compromise when I found a mermaid princess costume that was sparkly though not pink. It turns out, as long as there's glitter, a wand, and a beautiful plastic pearl necklace, it doesn't have to be. This discovery almost revolutionized Halloween for me. Almost.

The next year, I decided to push my luck and try for a mini theme. A fortuitous trip to Comic Con with my students convinced me that Power Rangers was the way to go. I mean their masks have Japanese symbols on them. How cool is that? Sky loved the idea of being Red Power Ranger. He thought the "fire" mask was especially awesome and enjoyed posing with his various secret weapons. Here you see him effectively utilizing his freeze ray (conveniently shaped like an LED flashlight).


Stow couldn't have cared less about being Yellow Power Ranger, but who can resist a seventeen-month old with fake muscles and a hat in the shape of the Japanese character for light? Obviously, I couldn't. This is also as close as I was going to get to covering his head or face, so there's that.



The challenge, of course, was Pink P. I knew getting Pink to agree to a non-princess outfit might be difficult. But given the pink-ness of Pink Power Ranger, I thought I had a good chance.

I didn't.

She would not even entertain the thought of being a Power Ranger, and so I had to settle for this. At least it wasn't pink, and her princess of choice a brunette instead of blonde. I take my victories where I can (even when they aren't really victories at all).


That brings me to this year. My batting average at not getting Pink to dress like a princess seemed pretty dismal. As the following useful info-graphics make clear:

I'm still pretty proud of Mike Wazowski. I could never pull that off today.
Pink's costume choices from 2008 until 2012.

*****


Going into the sixth round of Pink P costume searching this year, I didn't have much hope.

And then Pink P chose this:


Sometimes I'm pretty sure she's just messing with me. I mean, why couldn't she pick this last year when both her brothers were Power Rangers? Honestly, though, I don't care because now my princess to non-princess ratio is 1:1. And, besides, how awesome is that look? 

Lest you're worried I got off easy this Halloween, I should tell you that Sky is refusing to dress up. First, he couldn't find a costume he liked. And since I knew I'd be traveling a lot in the weeks leading up to Halloween, I agreed with him that maybe he could just stay home and help hand out candy this year. But then I started worrying that he was avoiding Halloween due to his anxiety and sensory issues and that he really wanted to participate but didn't feel like he could. So, I took him to the Halloween store. You know the one: it pops up in a strip mall near you on about the first of October and is gone by the first of November. Normally, I avoid these stores, but desperate times call for desperate measures.

And, my ploy seemed to work. Sky was immediately drawn to the (admittedly awesome) Minecraft accessories. And, since it was my idea, I couldn't say no. 


I'm not going to tell you how much this little get-up cost (shirt from Target, by the way), but I will say it was more than the other two kids' costumes combined. And the best part? Sky's still not sure he wants to wear it. I did manage to get him to wear the t-shirt for the school Halloween parade, but the ridiculously expensive cardboard head and foam pick ax are waiting safely at home.