Wednesday, August 17, 2016


Sky starts middle school today, so yesterday we visited the new building to get his schedule and to meet with his peer buddies. This was our second visit. We met the social worker and got the lay of the land back in May in an effort to prevent Sky from obsessing about middle school all summer. PSA: If you have an ASD kid who's prone to worrying, DON'T let him read the Diary of a Wimpy Kid series. Like ever. I mean, they should slap a warning label on those books or something. Our visit last May helped, but it didn't totally erase the gloom and doom Sky expected from middle school thanks to Gregory and company. In an effort to survive the summer, we had not to talk about middle school AT ALL.

The whole orientation process was supposed to take about an hour. We were at the school for a brutal two and a half hours (during which time, I am pretty sure I lived about seven lifetimes). And, I was reminded, again, why we make so much effort to lay the groundwork for Sky. I mean, he is doing so, so, so well in so, so, so many ways, but he still has some pretty intractable struggles. Change is HARD. Dealing with the unexpected is STRESSFUL. Having all of the newness of middle school before you with Diary of a Wimpy Kid as your point of reference? IMPOSSIBLE. (You think I'm overdoing it with the caps? This is me showing restraint.)

We started in the library with about 20 other students. After long, awkward minutes of waiting, we were joined by several "peer buddies" who had been trained to walk their peer partners around the school as a way to help ease their transition. I'm pretty sure their training didn't cover what to do if their charge became catatonic with fear, though. Because, that's what happened. The wait was just long enough for Sky to become completely unhinged. Too many kids he didn't know. Too much tension. By the time Sky was joined by his sixth-grade and a seventh-grade peer buddies, he was a wreck.

Bless their hearts, the two boys were so earnest in their attempts to give Sky the low-down on middle school. Sky could have none of it. His anxiety was so severe, he never made eye contact and never managed more than a mono-syllabic whisper in response to their questions--if he answered them at all. As they tried to walk him through his schedule, he hung back, desperate to flee. The entire time, he mumbled under his breath various combinations of the following: "I can't believe you are making me do this. I am not ready for middle school. I have no idea what they are saying. How am I supposed to remember everything?  I want to leave. Right now!!"

I knew he wanted nothing more than to be back home, and I really wished I could have made that happen for him. But, I also knew that if we didn't get through the orientation, he'd have a horrible time his first day.  The entire tour, Sky remained steadfastly determined to get the heck out of there. I don't know that I've ever seen him so petrified, so robbed of his ability to communicate, but we soldiered on--all four of us feeling pretty miserable.

As soon as we could, we politely excused ourselves from Sky's buddies with a vague plan for the boys to meet him again on the first day. Our next stop was the assistant principal's office where we needed to figure out a schedule problem and request a locker relocation from the middle of a locker bay to a quieter and easier to manage end spot. Sky remained petrified. He couldn't speak. He couldn't make eye contact. I could see tears hovering in the corners of his eyes.
Asst Principal: "Welcome to middle school! Are you excited?" 
Sky: "...." 
Asst Principal: "How was your summer? Did you do anything interesting?" 
Sky: "...." 
Asst Principal: "I went to the Grand Canyon." 
Sky: "...."
Eventually, he quit trying to make small talk with Sky and looked to me for the lowdown. We talked briefly about Sky's anxiety and the best methods to address any issues that might arise during the year. Then he got to work; not only did he immediately solve Sky's schedule and locker issues, he also reached out to Sky's case worker to let her know we were at the school and that Sky was near DEFCON 1.

And, suddenly I was reminded of why I love this district so much. As Sky broke down at his locker, frustrated by binders that barely fit, overwhelmed by the all the new information, and scared of the unknown (How would he find his classes? Who would be in them with him? What was he supposed to take to every class? How could he possibly survive middle school?), his case worker, Ms. Hart, dropped by to say "hi." 

Within minutes, she addressed all of Sky's worries. One by one, she gave him concrete and easy-to-manage strategies. She introduced him to the PE teacher, walked him through the PE locker room, showed him her locker key in case he couldn't get his open on the first day, showed him how to hold the locker just so when it sticks, promised to walk him to each and every class if needed, and tracked down a copy of the school emergency map so Sky could visualize his schedule.

Sky's map.
Sky went from 120 straight minutes of being on the verge of tears--unable to speak or make eye contact--to being able to smile and laugh again. The transformation was striking. By the time we left two and a half agonizing hours after we'd arrived, Sky thought just maybe he could make this whole middle school thing work. And, by the time he got on the bus this morning, he'd memorized his locker number, his combination, and the way to all of his classes. In fact, I'm pretty sure he'll be the most prepared kid in the whole school!

It's hard to be a parent when your kid struggles. You have to push them through things when they don't know how to get through it on their own. When they fall apart, the balance between supporting them and making sure they are learning the skills they need to make it in the world without you seems impossible to calculate. Having good social workers and special ed case workers has made school an entirely different experience for us. They get Sky. They get that he doesn't need a lot of support, but the support he needs is pretty important to his success. Being in a school district that understands this has had a hugely positive impact on Sky's world. And, it's made my world a lot more manageable, too.

And, so, we live to fight another day. Now we just need to survive puberty!

Friday, August 12, 2016

The Best Laid Plans...

Last night Pink went to her first sleepover. In the small town where we live, sleepovers among the elementary school set are fairly common, so the invitation wasn't unexpected. Pink has played with the friend who invited her since kindergarten, and I know her mom well. Still, when she invited Pink over after gymnastics class on Tuesday, I hesitated. Pink may have been ready for a sleepover, but I wasn't sure I was.

Still, I said yes. I said yes because it's summer. And because Pink is ready. And because I don't want my fears about her asthma and allergies to become her fears. As soon as I'd said yes, though, I knew I needed to pass on some vital information to the other mom. I also knew the information might trigger a panic in the woman. That's the thing about life-threatening allergies and severe asthma--as chill as we try to be about Pink's issues, whenever I start to tell someone else the basics of keeping Pink safe, I am reminded of just how many dangers lurk out there.

"She's allergic to a lot of foods," I start. "I'll send the full list, but peanuts and nuts are the big ones."

The other mom nods. Asks me to just tell her a couple of easy things Pink can eat. How do you define easy? Pizza? Spaghetti? Macaroni and cheese? I'm stumped.

"Fruit?" I suggest. "Fresh veggies?"

The other mom looks as me as if I don't understand the meaning of the words "easy meal." Eventually, I suggest Pink will do fine with hot dogs and hamburgers as long as she doesn't have cheese...or a bun.

I run through a couple of other food suggestions before moving on to the next topic.

"So, do you know how to use an epipen?" I ask as casually as possible.

When she tells me she doesn't, I discretely pull the one I always carry out of my purse so I can show her while the girls are distracted by the vending machine.

"Take off the blue, plunge the orange into the fattest part of the thigh, count to ten, and call 911," I say quickly, matter-of-factly. But, I don't want the mom to panic, so I add, "We've never had to use it, so if you're careful, it should be fine." Before I can slip the epipen back into my bag, Pink's friend spies it and wide-eyed exclaims, "Is that a SHOT?!"

We're in the parking lot now, about the go our separate ways, so I hurriedly mention the emergency inhaler and the Benadryl. I try to keep it casual but by now, I imagine the other mom is screaming "Mayday! Mayday!" in her head.

When we get to the car, Pink is ecstatic. Giddy. She can't wait for the sleepover and vows to pack the moment we get home. I'm spent, and nervous in the way I always get when I walk someone through Pink's safety protocols. When I don't think about it all, I'm cool, but when I re-live it by explaining the precautions to someone else, I'm reminded of how terrified I should be to ever let Pink out of my sight.

Three hours before the sleepover, Pink starts carrying her backpack full of stuff around. Inside, she's packed her swimsuit, pajamas, her stuffed dog, a change of clothes, and Sky's old watch. We have to go home twice before managing to get to her friend's house--once for a hair brush and a toothbrush, and once because I realized the emergency medicine pouch is low on Benadryl. On the drive over, I remind Pink to read labels if she's not sure about food. I tell her to be polite and ask her what she will do if she sees a gun or if someone makes her feel uncomfortable. It's a short drive, so my refresher course on how to stay safe is abbreviated. She asks if she can call me, and I tell her she can in an emergency but that she'll probably be having too much fun to think about it.

When we get to the house, I tell the other mom about the maintenance inhaler and remind her to take the epipen with them wherever they go. The family has a dog and two cats, so I feel like I can see animal fur floating in the air. I imagine stray peanuts on the floor.

"Bye, Pink. Have fun," I say, but she's already gone, her giggles fading in the distance.

I make it until 8:30 p.m. before I check in on her. My biggest worry is the pet dander. I've seen her eyes swell so much that the whites around the pupil seem to bulge, and I'm worried the long-term exposure will trigger an asthma episode. When I text, they are watching a movie in the park, playing with friends from school.

The next day, when I pick her up at noon, Pink has just gotten out of the pool. The other mom tells me she did great, gives me a rundown of all the girls did, starts to tell me about the dog wanting to sleep in the same room as them. In my head, I am finishing this story in a very different way. In my head, the girls start to sleep with the dog, but then Pink's allergies flare, and they have to put the dog in the basement. But, this isn't what the mom is saying, and I don't really register it, until Pink comes over and unzips her backpack. The mom starts to talk about Pink's stuffed animal, and I assume she's going to tell me to wash it because the dog climbed on the bed and slept on it. But then Pink shows me this...

A dog with a hole.
...and starts to cry.

At first, I think it's just this hole, but then I realize the eyes have been gouged out as well. So, I, of course, do what I always do in a difficult situation. I laugh inappropriately.  As I am trying to stifle my laughter (after all, Pink is weeping beside me), I realize that the mom is telling me that their crazy dog has a button fetish. Pink is weeping, and I just want get out of the house before my inappropriate laughter takes over. As I turn to go, however, the mom says, "Oh, are the eyes gone? Bella, go look under your bed and see if you can find them."

I'm simultaneously repulsed and fascinated by this suggestion. Why does the dog chew off the buttons if not to swallow them? And, do I really want to take home half-chewed plastic eyeballs? Before I can resolve any of these questions, Bella shouts, "I found them!" and runs out and places the eyes in my hands.

Dog eyes.

It's hard to get Pink to the car because she is still sobbing convulsively. "That was my FAVORITE stuffed animal!" she exclaims.

"I though Fluffy was your favorite," I reason.

"They're ALL my favorite!" she insists.

Sky, who has waited in the car this whole time, can't decide if he should freak out about the dog cannibalism and the chewed-up eyes or if he should reprimand Pink for insisting on her love for dogs even when a dog has done her so wrong. Pink can't find it in herself to dislike the real dog who ate her stuffed dog, and this lack of logic is too much for Sky. The more animated Sky gets about what he perceives as her irrational love of dogs, the harder Pink cries.

I drive home in silence, not sure what lesson any of us should take away from this experience of Pink's first sleepover. I'm pretty sure Pink will forget about the stuffed animal that fell victim to this attack, and I am also pretty sure she will get invited to sleepovers again. That's what we hope for her, after all, a life of friends and freedom from health worries. I guess the takeaway for both of us, then, is that we can overcome even the biggest unexpected challenges as we seek to make that happen.

Friday, August 5, 2016

In Which I'm Being Completely Honest

Several years ago, Ren and I made the conscious decision to try to take the kids to Japan once every two or three years. Despite the expense (you could buy a pretty nice car for the price of round-trip tickets for a family of five) and the hassle of preparing everyone for the trip and closing up the house for a month, we have always believed that the benefits outweigh the costs.

I mean, how many kids get to leave their house in a village of 9000 people to stay in a 25th-floor apartment in one of the largest cities in the world?

Sunrise (from one window in our apartment)
And, post-sunset from another...
And, how many go from weekends biking lackadaisically around the neighborhood to exploring the pathways and tunnels (and fire jugglers and Pikachus) of Tokyo?

This is how we combat jetlag -- laps.

He wanted me to give it a try.
Pikachu, moments before being accosted by two Midwesterners.
Everything is an opportunity to take in entirely new and unfamiliar surroundings (whether in the city or the rural beach front or mountainside)....

Sunrise over the ocean

....and to practice Japanese, whether it's kids shows or Godzilla.

Singing and dancing with the TV.
Godzilla VS Mothra!!!!
Being in Japan is a chance to engage all of our senses in ways we can't normally do when home in the US. We're fortunate to be in a position where we can make this trip every few summers so our kids can begin to figure out their identities as Japanese-Americans, to continue to build the foundations of their understanding of written and spoken Japanese, and to create memories together that will hopefully stay with them for the rest of their lives. Traveling to Japan is fun, but much more importantly, it's key in helping our kids figure out who they are.
Riding the train.
And, until this last trip, I was completely convinced that it's the best way to help our kids stay connected, but then things went south. I mean, there was a lot that was really great about our visit to Japan. But there was one thing that was really, really bad. Stow regressed.

In fact, both times we've taken Stow to Japan, he has regressed. The first time, he was 3, and he basically hit and bit me the entire time we were in Japan. He didn't do it before we left the States, and once we returned, he stopped doing it again. It was horrible even though now he doesn't seem to remember Japan as being a negative experience for him.
This is a picture he drew nearly TWO years after the trip to Japan.
Having Stow go from being fairly complacent and totally non-aggressive to biting, hitting, and running was unnerving. Suddenly we felt like we were looking at a young Sky all over again. But, then we came home, and it was better, so we figured it was just an anxiety response to all the new things he experienced his first time in Japan.

Stow's older now, and he claims to love going to Japan, so I figured he'd be fine this time. Just to be safe, though, in the weeks leading up to our trip this summer, we worked at length with our OT and behavioral therapists to create social stories and to put together a bag of fidgets to help Stow with the trip.

Our preparations didn't work. Stow slipped into his alternate state as soon as we got on the plane and demonstrated aggressive behaviors and a high tendency to wander throughout our trip. It was just like last time, only this time, the behaviors didn't stop once we got home. In fact, we are still working very hard to undo whatever it is that was "done" while we were in Japan. It's hard. It's frustrating, but most of all, it's incredibly heartbreaking to see Stow struggle like this despite all of his hard work.

We still don't know what triggered the regressions in Stow. Was it the sensory overload from being in a country where just about everything is different than what he's used to? Was it the food that wasn't always as GFCF as we would have liked? Was it the stress of trying to relate to his peers without being able to speak Japanese well? Was he bullied at preschool by kids who saw his giant size and inability to speak an invitation to be aggressive? Did the long airplane ride mess up the pressure in his ears? Were the transitions just too much for him? Maybe it's all these things. Maybe it's none of them. I guess the only thing that really matters is that Stow doesn't know why he's doing what he's doing, and his behavior is negatively impacting the quality of life for all of us.

I think this has to be the hardest part about parenting non-neurotypical kids. Sometimes everyone can be working as hard as they can and doing all that they can, and the interventions just don't work. Sometimes whatever is going on is an impossible puzzle, and all you can do is keep at it until you figure it out. We are back in our routine now, back on our diet, and back at our therapies, and we are even trying a couple of new things to see if they help Stow settle back into his old ways.

Other than that, we are waiting and praying and hoping we can help him work through this. (While trying really hard not to panic). It will be okay. It won't be easy, but somehow we will figure it out. We have to.