Sunday, April 27, 2014

Update Number Twenty-seven Zillion

Okay, not really, but it's been awhile since I posted an update on all of our various endeavors, so, here you go!

It has been 278 days since we moved, and, drum roll please........ I finally managed to hang pictures on the walls in Sky's room! The quality of these photos isn't great because it turns out that "midnight blue," or whatever the heck that color on the walls is called, doesn't work well when sunlit and then auto-smart-fixed on Photoshop. But you should definitely ignore all that and admire my wall-hanging skills.

You should also know that Sky cleaned his room just so I could take and post these pictures. He hopes you like his staging.



Second, after much pain and suffering (and approximately a bajillion phone calls), we may have finally managed to get Sky hooked up with some OT and behavioral therapy. It. Was. Not. Easy. And, it's way too early to see how it will go, but it's a (desperately delayed to the point of being ridiculous) start.

Did I mention that the new OT is hippotherapy? It's pretty awesome because it forces Sky to (naturally and willingly) keep tight control over his various impulses and sensory responses.

And the behavioral therapist is a play therapist--also something we didn't have access to before we moved. Again, the jury's still out on the effectiveness of this, but if nothing else, they all love the sand table. (Sorry for the fuzzy picture--this is what happens when I try to photo under cover).

Finally, it has been 498 days since we went gluten free. I've written about the ups and downs of going gluten free herehere, and here. But what I haven't told you is that since we went GFCF, Pink has not had to go to the hospital for her asthma even once. She has also backed off the serious meds she used to take. Now she's just on a mild maintenance medication and only taking half of the usual dose. Plus, she's needed her emergency inhaler only 6 times in the last year. Pre-gluten free, Pink was hospitalized twice a year and on steroids at least once every three months. She needed her emergency inhaler almost daily. The post-GFCF change is nothing short of miraculous.

Gratuitous bento shot.

Gratuitous bento shot. (These two, I made).
Stow, meanwhile, no longer sports a bloated gut, and Sky no longer randomly vomits. There are behavioral and developmental changes going on here, too, but, to be honest, even without that, the reduction of asthma emergencies and random yet persistent stomach issues has improved the quality of life at our house tremendously. Gluten free is a hassle, and it's expensive, but I am sure it has paid for itself many times over just in the number of averted trips to the pediatrician or ER.

Gratuitous bento shot.

Gratuitous bento shot (and these two were made by Ren, a.k.a. Mr. Overachiever)

Tuesday, April 22, 2014

Postscript

Yesterday, Sky went back to the after-school art class for the first time since being "dis-enrolled" from it. He went prepared with his visual cue card, a container of gum, his sketch pad, and a note to his homeroom teacher reminding her to send him to the art class instead of to the bus. He came home excited that two friends from his class are participating this session. Other than that, this class was no different for him than all the others. 

Later that night, I got the following message from the program director:
Dear Moe, 
Wanted to let you know Sky did a great job today, I was very proud of him!  Miss S was out sick today, and I was available to teach the class.  He politely asked me about the gum just before class and half way through, he asked to get another piece, which was no problem.  I think it really helped.  He really only blurted out once. He got a little silly a few other times, but really not any more than some of the other kids. It's cartooning so we expect a little more silliness. He fell off his chair once, but it didn't appear to be attention seeking, I didn't make a big deal about it. When I was collecting sharpies, he did throw his sharpie towards me.  He realized his error right away and said "I should have said catch", I agreed and suggested handing it to me next time instead. He didn't use his sketch pad until he was done with his picture.  He doodled on our black scratch paper between steps, which is fine.  He went ahead drawing instead of following the steps - but that's perfectly fine too. I could tell that he was really trying to control himself and to please me.  He was sweet, polite and looking for reassurance, which I gave him.  I did have him sit up front, which he didn't seem to mind (I had name cards already in place when the kids came in, so it was assigned seating for everyone). When it was time to color he shared markers with the girl next to him, they got along really well.
I really appreciated that she took the time to let me know how it went. Thing is, though, I'm pretty sure that's what he's been doing all along. He never keeps it all together, but he cares about what you think, and he tries HARD.

Isn't it amazing what people can see if they take the time to understand difference as something other than annoying? If people take the time to look--you know, to really look--they can see Sky for who he is. And, then they figure out he's not that hard to teach after all.

When teachers get Sky: This one let him play with the piano cover off so he could satisfy his strong need to see how the piano works as he plays. I remember entire lessons (lessons!) lost to the denial of his unrelenting need to look inside the piano. 
But how do we teach this? How do we find teachers like this piano instructor who are willing to think outside the box? How do we help people see neuro-diverse kids and kids with learning differences for who they really are? I'm not sure I know the answer, but I do know that it's my job to advocate and to educate until things change. 

It's all our jobs, really.

(Read the story from the beginning.)

Sunday, April 20, 2014

All the Joy, All the Sorrow (Part 3)

The next morning, I decided not to look at my e-mail. And, instead I waited until after taking a shower, making breakfasts, packing lunches, seeing kids off on the school bus, taking Stow to daycare, grading, prepping, and teaching to see if I had gotten a reply.

Did I mention I CC-ed everyone on Sky's IEP team, the school principal, AND the head of the special education co-op for the region? Generally, I'm not a CC-er--it's a tad too passive aggressive for me. But people needed to know that the after-school program being promoted by the school and held in the building after hours was discriminating against kids like Sky. Besides, the e-mail exchange I had with the program director was a pretty good example of the kinds of concerns I'm trying to bring into better focus for Sky's IEP team.

With all of the CCs, I expected radio silence.

Instead, I got this--it'd hit my inbox at 6 a.m:
"Thank you truly for your enlightening email.  You are correct, I have handled this poorly, and I apologize for not reaching out to you in a timely manner....I am hoping, if it's still possible, you would allow me to try and remedy the situation."
My first instinct was to ignore her, to let her sweat. But then I reminded myself that my goal is to teach Sky self-advocacy while also educating people about autism.  So, I agreed to talk with her.

When we talked, she admitted that she had not done nearly enough to work with me to help Sky succeed. She also admitted that it was clear to everyone that Sky's behavior was not malicious, just disruptive. She even admitted that the so-called "crying girl" she mentioned in her earlier message is "pretty sensitive" and "cries about everything."

As calmly and as clearly as possible, I explained one by one how her actions had been inappropriate up to that point. I also helped her deconstruct her own e-mail message, so she could see just how much damage she could do by choosing to tell a story in a particular way. The more we talked, the clearer it became that, in fact, Sky had done nothing wrong. He was just difficult to have in class. Period.

When she asked me to give her a chance to remedy the situation by having Sky back in the class, I said, "Well, I have to be honest--I don't feel entirely convinced that you've created an environment that suits Sky. I need to hear the concrete ways in which you plan to do things differently."

Sky's visual cue card.
Then I paused. I wanted to make sure she really got what I said next.

"But, this decision is not up to you. Or, even me. You disempowered Sky when you told him he couldn't come anymore. He should be in control, here. I will let him decide."

That day, after school, I explained to Sky that I'd talked to the program director and that she wanted to apologize for how she'd treated him. Then I told him he could go again if he wanted to. He thought about it for a minute and said, "You know, I think I will."

"Good," I replied. "Then let's talk about what you need to succeed there."

Without missing a beat he answered, "Let's see...Well, I can use my picture card. That helps. And, if I'm allowed to chew gum, it will remind me not to talk when I get too excited. I also really wish I could have a blank piece of paper to draw on. I think I will bug people less if I have something to do with my hands while I wait. And, I really wish the teacher would let me get up and walk around from time to time. You, know, since I can't bounce my feet on my chair like I do in Mrs. A's class."

This, you guys. This is what it looks like when Sky advocates for himself. When Sky thinks people are judging him and failing to see him for who he is, he can't do this. But, when he starts to believe he is being heard and seen, he can blow your mind.

*****

All the joy.

As improbable as it seems, sometimes all the joy comes from all the sorrow. That my sensitive, smart, and funny kid can take his heartbreak and so swiftly turn it into forgiveness and action blows my mind. But, it also reminds me not to look away when things get hard. Because if I do, I just might miss out on some of that joy.



Part 1
Part 2
Postscript

Friday, April 18, 2014

All the Joy, All the Sorrow (Part 2)

The after-school art teacher’s e-mail hit me like a sucker punch to the gut. Instantly, I could feel my pulse quicken, my breath shorten and my eyes burn. I stopped being able to hear whatever it was the Ren was saying to me in the next seat. I had to remind myself to breathe, to focus, to keep it together. Every time this happens, every time Sky is rejected so completely, I never fail to be amazed by just how close to the surface my emotions are. Raw, is probably the right word for it. I always think I’ve moved on, gotten thicker skin, figured out how to not let these things bug me, but then something happens, and I am right back in that horrible, vulnerable space.

“What?” Ren asked, noticing my sudden inattention to our car conversation.

“Sky’s been kicked out of the after school program,” I said under my breath. In the car, I’m aware of the three pairs of ears listening to everything we say.

This was Sunday afternoon. The new session was scheduled to start the next day after school. I had no idea what was going on, so I had to ask.

“Sky, buddy,” I started, “have you been having trouble in after school art class lately?”

“I don’t think so,” he replied. “Why?”

Listen. I know I could have lied here. To be honest, I tried stretching the truth a bit by saying something about how the class was full, so he wasn’t going to be able to take it because the teacher wasn’t sure she could help him if he got overwhelmed. This was kind of true—the program director mentioned losing a parent helper and larger numbers than usual in her message. But, then I started to think about how we are always talking to him about the importance of understanding his behavior and how it affects others and learning how to self-advocate. And I realized he needed to know. It broke my heart to have to tell him.

“The teacher says you’ve been shouting out and sometimes you throw things. She says you fall out of your chair. Is that true?”

“Well, I guess I am kind of loud since I’m excited. But I don’t throw things. Sometimes I toss them onto the table though."

“Okay, buddy, I see.”

“Why?”

“Well, that’s why they said you couldn’t come back.”

“Oh." Pause. "Wait, so you mean, even if the class wasn’t full, I couldn’t go?”

“Maybe,” I said hesitantly. “Yeah, it kind of seems that way.”

He got stuck on that point and asked me the same question in several different ways just to make sure he got it. When it seemed he had, I said, “All we can do is keep working on those things that are hard for you. I know you’re awesome and that it's going to get easier. It just takes time. And practice. I'm not worried about it, though.”

Then, I shifted the conversation back to the great art show and how proud we were and how proud his art teacher and his homeroom teacher were of him. I reminded him of all the people who gave him a shout out on Facebook and what his grandparents said.

After a long afternoon and evening of willing myself to breathe deep and keep my eyes dry, I finally got the kids to bed. I had three hours of work ahead of me, and I really, really just wanted to let the ignorant woman and her stupid program go. Clearly the program wasn’t a good fit for Sky. Clearly they didn’t see him the way he deserves to be seen. Screw them.

But, the more I thought about it, the more I just knew I couldn’t let it go. This was the first time since he’d been diagnosed that Sky had been asked to leave anything. Worse, the more I mulled over wording of the e-mail, the more I was convinced it was just plain discriminatory. I can’t tell Sky to advocate for himself if I'm not willing to do the same.

So, I wrote this response to the woman:
Thank you for your message. Since I had not heard of any concerns regarding Sky’s behavior recently, you can understand our shock at receiving it. (In fact, our last correspondence was more than a month ago, when you wrote, “We will see how it goes, and I will advise from there.” I responded to your message immediately, asking to be informed as soon as possible if there were problems, but didn’t hear from you again until today, when you wrote to tell me that Sky’s registration was being denied.) 
You should know that your “difficult decision” has deeply hurt my son who loves art and who struggles but works hard to try to fit in with his peers. Sky is upset, a situation made worse by the fact that we are just now learning of your decision (by e-mail, no less) the day before he was set to begin a new session, one in which he was very much looking forward to taking part. 
In your message, you list several “efforts” made by the teacher, but they are far from adequate since we were never able to have enough communication to actually talk about why Sky might be behaving the way I am told he behaved. You mention that she tried to use some of the phrases I suggested and that she made laminated cards (even though those are cards that, at my request, were made by his IEP team, discussed with Sky, and sent with him to the classes in order to try to help him). None of these things will be effective without some understanding of why Sky is doing what he’s doing. This, I know from experience (and is, in fact, supported by much recent research on Autism Spectrum Disorder), which is why I have offered repeatedly to try to work with Sky and the teacher to alleviate some of her concerns. 
Interestingly, when I try to ask Sky about some of the incidents you mention, he is truly befuddled. This is not because he has forgotten or because he is lying about his behavior, it is because much of the “verbal outbursts,” etc. you describe were most likely part of his natural way of engaging with his environment and therefore not entirely noticeable to him. It is unfortunate that his behavior disturbed other children, particularly because much of it could have been remedied if I had been made aware of these “incidents” in a timely manner or been given the opportunity to try to help. I do wonder, though, if a child was upset by another’s physical disability, for example, whether the same blame would have been assigned. Would you fail to try to accommodate his needs if he was in a wheelchair? Or needed someone to sign the directions? 
Your pattern of waiting weeks or more to tell me that there were problems, your slow responses to all of my e-mails regarding concerns about Sky’s behavior, and your unwillingness to work more closely with me to try to make the classes work for Sky are extremely disappointing and, in my opinion, unacceptable. By being unwilling to work with me to help Sky succeed in this environment, you have ensured his failure. While it’s a difficult decision for you, it is devastating one for him (and, I should note, the first time in the four years since we received his diagnosis that he has failed to thrive, with support, in an environment, or worse, been asked to leave it). What makes it so frustrating is that it could have been avoided. 
In the future, I hope that you will make clear to the parents of special needs children wanting to take art classes that they cannot be accommodated in those classes.
This message didn't pull any punches, but I had to write it. I wasn't going to be able to sleep until I did. You know, I write these kinds of letters (calling people out on their idiocy) from time to time, but I almost never send them. This one, though, needed to be sent.

But, I was a little afraid to send it. I'd never been quite this blunt to anyone about how their actions impacted my son before. I'd never so blatantly accused someone of discrimination. It made me nervous. So, to make sure that I wasn't taking the wrong tone and unnecessarily pissing anyone off, I showed the letter to my friend, fellow ASD mom blogger Michelle Awesome. (She asked me to call her that--I agreed, but only because she promised to call me Samurai Mama from now on). Michelle's feedback was short and sweet:

"I think it's f^#*!ing awesome. Press send."

I knew she was right, but I needed that conversation and the support of someone who so thoroughly understood what this was like. (Thanks, Michelle!) Finally, I pressed send, and then (and only then), I could sleep.



To be continued.... 



Thursday, April 17, 2014

All the Joy, All the Sorrow


A month or so ago, Sky brought home a letter from his school art teacher saying his picture had been selected for the "young artists" exhibit at the city art museum. She told us to look for a picture of him in the local paper. That was back in February, or maybe early March, so I wasn't even sure which paper to look in or when.

For a couple of weeks, I tried buying all of the local papers but eventually gave up, assuming I'd missed it.

Then last week, Sky brought home an extra copy of the paper along with a glossy photo of himself holding this picture.

The actual picture is squarely framed. This is a picture of a picture of the picture, though. So, less square.


This, you guys. This is the picture that got selected. He's one of five kids out of 350 in his school to have a piece selected. So, it turns out it was kind of a big deal, which is why his art teacher reminded us of the exhibit opening (more than once). We wouldn't have missed it for the world.

Of course, it was a mad house with kids in grades K through 12 from all the district schools and their families in attendance. As soon as we got there, Sky spotted his art teacher. He wanted to introduce her to us, but he kept trying to get her attention by standing just behind her in a very crowded and loud room. Every time she walked off, he got discouraged and came to me for help. Unfortunately, since it was nap time, Stow decided this would be the perfect time to show off his "death drop" skills--you know when toddler goes from vertical to horizontal in a single motion-- so I found myself weaving through the crowd, dragging a 36-pound toddler in the prone position while encouraging my socially awkward son to step in front of his teacher. After five minutes of dragging and weaving over the entire area of the exhibit, I may or may not have resorted to giving Sky a little shove to get him into her path.

When she saw him, her eyes lit up and she grabbed his hand and took him right to his picture. He got that sheepish proud grin he gets that I love so much. As we were weaving back through the crowd, me still dragging Stow, she said to me, "He's brilliant, you know. The way his brain works is fascinating. I'm amazed by how he sees things."

When we got to his painting, we took a picture of the two of them in front of it. She called over her husband and introduced him to Sky as "the one who did the incredible Native American storytelling project." He congratulated Sky on his work, and she turned back to me and said, "It's a pleasure to teach such an out-of-the-box thinker. He really is quite talented. Wait until you see the one he's working on now. The layers are amazing. You'll want to frame it." And then she was off into the crowd, pulled away by another student wanting to introduce her to his parents.

That, you guys. That is what it's like to meet a teacher who really sees Sky, a teacher who refuses to be put off by his sound effects or his inappropriate comments or his need to move at inopportune times, and empowers him to express all the brilliant ideas bottled up inside of him.

*****

Twenty minutes later, on the car ride home, I got an entirely unexpected e-mail from the woman who runs the after school art program Sky had been attending for the past six months. In it she outlined his allegedly escalating behavioral issues. She ended her message with this:

"[His teacher] doesn't feel she can adequately support his needs, the needs of the rest of the class and maintain a positive learning environment. After much consideration, we will not be accepting Sky's enrollment for this last session. A credit has been processed. I'm sorry for waiting this long, it was a difficult decision."

This. This is what it's like to live with autism. Because, when you are living with autism, you experience all the joy and all the sorrow, and sometimes you do it all at the same time.

See, it's not just about me and my kid. I get my kid. I love my kid. I love it when people get my kid, because when they do, he feels happy and proud and confident in a way that fills me with unimaginable joy. But a lot of people don't get my kid. They judge him and are mean to him and discriminate against him because what they see is not the awesomeness that hides just beyond the verbal stims and the poor social skills and the seeming inattentivenss. They only see those things that are very much a part of his autism. And they discount him for it.

I love every single thing that makes Sky who he is, but I don't love the way people treat him because of it, and I don't think I will ever stop being heartbroken every time something like this happens to him.

(To be continued...PART 2, PART 3, POSTSCRIPT)




Tuesday, April 8, 2014

One of Those Mornings

Someone woke up at 3 and threw up every fifteen minutes for exactly three hours until the exact moment my alarm when off. Then she stopped and hasn't done it since.

Someone else pottied on the floor. The usual suspect was wearing a diaper and didn't seem to have a large enough window of opportunity to pull it off,*** so maybe it wasn't a someone, but a something....But what?

Another someone had a meltdown due to a missing toy car which made it very difficult for him to think about getting on the school bus.

No one had a calm, cool and collected morning--I mean, it was ugly. But, what really got me this morning was this:


It turns out that this is one of those mornings when I discover I've left not one, but three lunch boxes at work and am forced to walk from my car to my office holding Pink's old Hello Kitty lunch box at my side.

Look at her. She's clearly mocking me.



***I know I should just let my pun do it's magic without point it out, but I just can't. Do you like my pun?!?!



Monday, April 7, 2014

What to Do if Your Husband Vacuums too Much and Other Useless Metaphors (My Messy Beautiful)




The first year of our marriage, we fought about vacuuming. Ren would often come home from work around midnight and jump straight into his cleaning routine. It didn't matter that his daughter and mother were sound asleep in the other room or that I had the futon spread out and was snuggled deep under the covers trying to catch up on one American TV program or another. He had to clean. I'm pretty sure I was the only newlywed in the history of the universe to complain about her spouse doing too much housework. But it annoyed me, and I hadn't yet come to appreciate how having a kid with asthma and allergies alters your cleaning habits.

I don't remember a lot from that first year other than the arguments about vacuuming, trying to figure out how to parent a less-than-willing Japanese tween, and struggling to make sense of what Ren's 75 year-old mother was telling me to do. I also distinctly remember wanting to give up on the marriage. Lying awake each night on that mat on the floor, wrapped in the warm smell of the tatami, with the lullabies of the cicadas in my ears, I felt alien...uncomfortable in my new skin.

At the time, a good friend of mine said, "It took you two years to decide to marry him. You need to  give it at least that long to figure out if you want to separate." Looking back now, her advice seems pretty arbitrary. Useless, perhaps. But at the time, it made perfect sense. So, I stayed, and we figured out how to communicate over and beyond, below and enmeshed.

When you are from two entirely different countries, speak two very different languages, and are the products of two completely different generations, you learn you have to work hard to meet in the middle. You also learn that life together comes with its fair share of of missed connections. Those early years, married to Ren and living in Japan, I discovered that, a lot of the time, marriage is just about pulling yourself up out of the futon each morning and trying again.

*****

Last weekend, we spent the night in Chicago. By the second day, Ren's back hurt so bad, he didn't want to walk. So we decided that he would drop me with the older kids at Water Tower Place while he and the baby found a quieter, more peaceful (and cheaper) place to park. Since we only have one cell phone, the plan was to meet on the side street next to Water Tower in an hour.

Or, at least, that was my plan as I thought I'd conveyed it to Ren before we parted. Ren, apparently, had a different plan.

Our meeting time came and went. Pink P (6) and Sky (9) found the cutting, cold wind difficult to bear, so we walked back and forth between our meeting place and a space just inside the door overlooking the spot where I expected Ren to appear at any moment. Over and over again, I ventured out into the cold with two miserable kids only to find the street empty and to feel the uneasy knot in my stomach getting bigger and bigger.

Where was he?

Having a kid with Aspergers means you can never let on that you are worried. Or scared. Or upset. Thing is, keeping your cool gets harder when you have a 9 year-old standing next to you outlining in great detail all of the possible ways things might have gone wrong. Sky was sure Ren had forgotten us. Pink was too tired to take another step. Both kids were hungry and tired of carrying their stuff.

When Ren didn't show up on the side of the building, we checked the back and then the other side. We walked three blocks away from Michigan Avenue, toward the lake, thinking he was most likely to have parked somewhere over there. Round and round we went. Ten minutes. Twenty minutes. Thirty minutes. Forty minutes.

Where WAS he?

Just as I was about to give up and try to find a hotel for the night, just as I made one last sweep around the back of the building, Ren pulled up.

And he was mad.

"Where were you?!" he asked. "Why weren't you where you said you'd be?!!"

Thing is, I was exactly where I said I'd be. (I mean, really, what sense would it make for me to go anywhere else, especially when it's 30 degrees outside?). But I could tell that didn't matter. He hadn't heard me. He'd been too distracted by the city traffic and his thoughts about places to wait for us. The whole time I was searching for him on the sides and back of the building, he was just around the corner in front. For forty minutes, we completely missed each other. And the whole time we were only about 100 feet apart.

*****

As soon as I understood that we were all okay and allowed my anger to dissipate, I realized those forty minutes we spent around the corner from each other could serve as a good metaphor for our marriage. When life gets hard--like it has been lately with a move, a third back surgery followed by a trip to Mayo and then the realization that Ren will probably never regain full mobility, along with the constant joys and sorrows that seem to accompany life with kids on the spectrum--I have to remind myself to actively communicate with my husband. I also have to keep telling myself that when all else fails, sometimes the most important thing I can do is pull myself out of the futon and keep on moving forward.


This essay is part of the Messy, Beautiful Warrior Project — To learn more, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

Thursday, April 3, 2014

Let's Take This Show on the Road

Last week, I bought five tickets to take the Moe family to Japan this summer. I'm going for work, and I really want them to tag along. Stow has never been, Pink P doesn't really remember it, and Sky needs to brush up on his elementary-school boy Japanese. Plus, Ren's mom isn't getting any younger, and the kids hardly remember their cousins.

The last time we were there, Sky was five, Pink P was two, and there was this moment when I was weaving my way through Ikebukuro Station (the second busiest train station in the world with nearly 3 million visitors every single day) with Sky tripping along behind me and Pink sitting in her stroller singing some silly song at the top of her lungs, and I thought, "Next year they'll be 6 and 3, and this will be a lot easier."

Ha!

Hahahahahahahahahaha ha ha ha!

Sometimes I crack. my. self. UP!

I mean, we all know how things turned out. A few months after that trip, we learned we were expecting Stow, Sky got diagnosed with autism spectrum disorder, and Pink developed serious asthma. A couple of months after that, Ren's back went south for good. Then I defended my dissertation and we moved again. In other words, the next year was definitely NOT easier. In fact, it was much, much harder.

Before the extra kid and the various diagnoses and the bad back, we were on the move a lot. Sky and Pink logged thousands of airline miles, visited all sorts of places, and lived in one of the biggest cities on earth. We spent a year in a 150 sq. ft. apartment commuting to preschool on bike and spending our weekends wandering all over the back alleys and side streets of Tokyo in search of the new, the exciting, and the bound-to-keep-the-kids-entertained-ing. But the year between our last family trip to Japan and my dissertation defense was the hardest year of our lives. It stopped us in our tracks and forced us to rethink everything we thought we knew. All of it.

It has taken us awhile to figure out how to move on from there. We've had a lot of fits and starts (you know, like the three back surgeries and all the weird stuff with Stow's health; not to mention the trip to Mayo to see if maybe Ren had some kind of rare nerve disease--he doesn't), but after learning that Ren is just going to have to live with the bad back, we decided it's time to get going again. Smaller this time.

Step one: An overnight trip to Chicago during spring break.

I'll be honest. I didn't want to go. I wasn't sure Ren would be able to get around. I didn't know how we would handle all the food restrictions and allergies. I was sure the boys would be overstimulated by all the sensory input and spin away in a thousand different directions. I could imagine a million different ways things could go wrong. Plus, I desperately needed to make up for lost sleep and lost grading/class prepping time after a stressful week at Mayo. But I'd promised the kids we'd take them to a hotel with a pool during their spring break, and since I hadn't kept that promise during the summer (because we moved) or around the time of their birthdays (back surgery #3), I didn't have the heart to cancel on them again.

By the time we were all in the car and on our way to the city, it was already clear we had to simplify our schedule. So, instead of trying to go to Legoland and swim in the hotel pool, we went straight to the pool with a promise to visit the Lego store the next day when we went to American Girl Place (a stop I'd promised for Pink). And instead of trying to make it through dinner at our favorite restaurant, we opted to stock up on bentos from Mitsuwa and eat as many meals away from crowds as possible. The following day, instead of trying to see every exhibit in the museum, we limited our visit to three hours and got the kids out before they were too hungry or too tired to behave like human beings. By slowing down and focusing our efforts on just a few stops, we managed to have fun and avoid several (though not all) meltdowns.

At the end of our 32 hours in the city, Sky summed up the best and worst of our trip:

The Good

Rainforest Cafe with new friends
Seeing tall buildings
Lego store
Staying in a hotel
The hotel pool
Watching TV in a hotel
The museum

The Bad

Lots of noise
Expensive parking (he may have heard me complain a couple of times)
Losing Daddy

The positive certainly outweighed the negative, despite the unfortunate incident where we waited for 40 minutes in 34 degree temperature because Daddy didn't pick us up at the pre-arranged meeting spot and instead waited for us a just around the busy corner where we didn't think to look (which is somehow a metaphor for our marriage, though I'm not sure how exactly).

Are we ready for Japan this summer? I have no idea. But I'm pretty sure we can't just sit at home and worry about how things will go.