Wednesday, September 30, 2015

Too Much of a Good Thing?

I just read an article on a study that concluded people these days are stressed about having too many sources from which to find information, and too many ways of communicating with others (essentially, too many things to "check").

My oldest is apparently not one of them.

The other night I found Anna in her room with Taylor Swift blaring through earbuds while she read a Harry Potter book. "How can you focus on what's happening in the story?" I asked her. Especially if she was singing along! "Oh, I can," she replied with confidence.

There's nothing like having a middle schooler to make you feel old. I hate writing stuff like this, because it's so cliché, so I'll just say it once: when I was her age, technology meant a black and white TV in my room that had a coat hanger for an antennae. Being social with a friend meant long conversations with my phone cord stretched to the closet for privacy.

This year and to some extent last, we realized just how plugged in kids her age are. We thought we were caving by giving her Dan's old cracked iPod with no phone plan and very limited online access, while several of her friends were getting iPhone 6's.

All of the old adages are true: Anna is already more tech-savvy than I am. Two weeks ago she figured out how to "FaceTime" her friends. When she started walking around the house with the phone so her friend could see Chloe, I scampered to get out of the way and thought, Wait a minute?? I got into my pajamas early! My house is messy! How is it that my child is on the phone and suddenly I have no privacy?!

I hate sounding like a curmudgeon. I don't want to grow old and cantankerous. But I would like to know: How in the world do kids today focus, because I know with one social media account, three email addresses and the limited amount of texting I engage in, I have trouble myself.

Yesterday morning within five minutes of waking up, I heard Anna's phone Ding! A friend was saying "hi." Then texting a bunch of smiley faces, and saying she'll see her in homeroom. In a half-hour.


Worse is during homework time. My girl, who already tends to be a little distractible, already has to contend with Chloe screeching, Ethan playing on the Wii or engaging in other mischief, and me cooking dinner (she insists she LIKES being with everyone else and doesn't want to study where it's quiet). And then there's the phone. Ding! Ding! Someone wants to know the Social Studies homework. Someone else wants to know if she's going to the Middle School Extravaganza on Friday (and Is you-know-who going?!). Someone wants to know if she can come over on Saturday.

The obvious solution (one we've already employed) is to turn the darned thing off during homework time. And dinner. And during any kind of family time.

I'm super happy Anna has friends. I'm glad she's adjusting to school. I know her generation approaches life a little differently, a little more quickly, a little more visually.

I just wonder about all of the "noise" sometimes. Because if we're always checking, and chatting, and looking, we're not ever being still.

And sometimes, being still, more than being plugged in, more than being aware or updated or in touch, is very, very important.

And sadly sometimes, we don't realize how important it is until we've forgotten how, and realize that maybe, we have spent a very long time talking but not listening; listening but not hearing; doing but not being.

Saturday, September 26, 2015

An Interesting Dilemma

While Ethan's bus troubles have (thankfully) quieted down, he's obviously still thinking about them, and the kids he wishes he got along with better. Out of the blue a few weeks ago he said, "I want to tell them I have autism. Then they will understand why I do things they don't understand."

I'm sure there will be a time down the road, sadly, when Ethan is not happy about his diagnosis, but at this point, explaining it to him has been tremendously beneficial. I think having a word to describe the things he does that make him different from the average person, or why people laugh or don't understand certain things he says, has been both a comfort, and like a key opening a door to a whole new way of seeing things.

Last week he said to me, "Do you want to know another thing I do because I have autism? When there's a problem that needs to be solved, I snap my fingers three times and pretend the Ooompa Loompas (from Charlie and the Chocolate Factory) are coming to fix it. Then I do this--" He showed me the thumbs-up sign.

Wow. Just, wow. I'd never even noticed. And not only that: something in his 7-year-old mind was able to detect that this behavior was, well, atypical.

While I'm happy that he's feeling happy in his own skin, the idea of him telling kids on the bus straight out, "I have autism!" gave me pause.

Who knows if they even know the word. If not, would Ethan know how to properly explain? It's hard enough for an adult to explain, or understand, never mind a bunch of kindergarten through second graders.

Beyond that, I was concerned that Ethan thought telling them about his autism would be the magic wand that makes these kids suddenly understand and like him. In reality, they might just not be very nice kids. But I didn't want to say that.

I decided to shoot an email to the social worker who is doing his social skills group this year. I thought she might have some ideas, or maybe could even think of a way to bring this up in the group. A few days later she called me back....and she was stumped, too.

She said they couldn't cover the topic in the social skills group because the other kids weren't aware they had a diagnosis or were different.

She wasn't sure if they could really approach the topic with kids Ethan's age, because they were too young, she thought, to truly understand and have the level of empathy Ethan was looking for.

"I've only had Ethan for a few weeks, but I can see he's incredibly bright and insightful," she said. "A lot of other kids, even typical kids, just aren't at that level of understanding at this age."

She told me she'd think about it and get back to me. I haven't heard from her yet.

This whole thing has left me feeling a little uncomfortable.

On one hand, I understand her point. I forget sometimes that in more ways than one, Ethan is not your average second grader. The way he has grasped autism and how his mind is ticking is pretty amazing. Maybe early elementary kids can't be expected to truly "get" it.

But I have a child here who wants to share about himself, and I feel uncomfortable telling him that he can't. Especially when, recently, another child he knows who has developed a health issue has shared it with other kids.

I don't know how to explain to him that physical, medical issues, and in general things we can see, are easier to understand than trying to explain what occurs in the brain.

So here we are, in limbo. Wondering -- how do we proceed? I suppose it's a good problem to have. I'd just love to have a good answer.

Sunday, September 20, 2015

This Loss Was a Win

"This year," Ethan's soccer coach said on the first day of practice, clipboard in hand,"We're going to work on self-control." She reminded me of the coach from Glee. Except she looked nothing like her; just tall and enthusiastic.

I was glad to hear it. Last soccer season had been one big lesson in self-control, and I'm not sure Ethan passed. The bottom line is, he hates losing. He especially hates falling behind if he was the one to allow the other kid to score. We had a couple of knock-down, drag out tantrums last year. I was constantly reminding him that he was "Inching towards the red zone" and needed to calm down. Many Dunkin' Donuts bribes were also involved.

Never mind autism, this struggle to keep emotions in check is in part, sadly, inherited. It's a struggle I've had since childhood. Some people have anger issues. I have crying issues. I cry when I'm sad. I cry when I'm angry. I cry when I'm happy. In fourth grade a school psychologist called home wanting to know why I cried so much. I've cried at every "real" job I've worked. I've also spent a good amount of time in bathroom stalls, sniffling, and pressing wet paper towels on my cheeks and around my eyes to eliminate the evidence.

Over time I would say I've gotten better. But I know how important it is for Ethan to start working on stuff like this early on.

The first game, he wasn't put to the test. They won fairly easily and never trailed. I knew it was only a matter of time before the issue came up again, and dashed a quick email off to the coach to give her some background and let her know this is something we were continually working on with Ethan. The night before the next game, we had a little chat.

"You've got to stay calm tomorrow, even if you fall behind. You know, if you throw a big tantrum, the coach is going to bench you and you'll have to sit out the rest of the game."

"I don't want that to happen!"

"Then remember to stay calm. What could you do when you start to feel really, really upset?" I told him he could bite his lip (not too hard!). Clench and unclench his fists. Take a few deep breaths and remind himself that it was just a game. The strategies all seemed kind of lame. Maybe I'm not great at coming up with ideas since I still haven't mastered this myself.

The other team on Saturday was bigger and more aggressive. They also apparently played dirty. Several kids on Ethan's team complained that they were teasing and mocking them. A few others got knocked down by more than a little roughness. Before long they were several goals ahead.

"They're all third graders!" Ethan's teammates kept complaining. "They're better than us!" One kid was so desperate to try to score against them that he kept tripping over himself and getting hurt, then crying.

"STOP THAT!" his father kept bellowing. "This is pathetic. There is no reason for you to be crying!"

I could only imagine what he'd be thinking if Ethan lost it.

Trouble came near the end of the game. Ethan was one on one with a kid who was just a little bit faster and better with his footwork. He got the best of Ethan and scored. From the other side of the field, I saw it; the dejected way he was hanging his head; the pacing. This was the precursor to tears and a meltdown. I started to walk over there.

Everyone else thought Ethan was hurt, as he hung his head down and the two coaches talked to him in low voices. I could see that he was biting his lip; his eyes were wet and a few sobs had escaped him.

"Ethe," I called gently. "You okay, buddy?"

"He wants to stay in!" the coach called to me. I could see the look on his face. It was, to use a word Ethan likes, fierce.

Oh, how I knew the struggle. How I knew that moment you feel something and it takes over everything. You body. Your mind. Your instincts. It's like a horse galloping away before you've had time to grab the reins. Tugging the reins is like swimming upstream, like slogging through mud.

But he was doing it. He was swallowing hard and moving on.

There must have been 15 minutes left in the game. Any time the coach checked with him, he was resolute. Even when she just wanted to sub him to give him a break physically, he refused.

"I'm not going to force it," she said. "I see the look on his face." Fierce determination.

His team lost the game. Three kids ended up on the sidelines with ice packs and tear-stained faces. The coach admonished them for not communicating better and for lacking energy.

For Ethan, this was not the time for lectures.

"You did it!" We patted him on the back. "You kept it together."

No more tears. No rolling on the ground.


"Ethan," I said, "Do you know we are more proud of you right now than if you had won the game?"

"You are?"

"Yes. Because you had self-control."

"I DID cry once."

"But you calmed back down. You didn't let it get out of control. We are so proud."

Hugs. I wished I could have conveyed how strongly I felt; how important this was; as someone who fights with emotions and moods all of the time. But I knew he wouldn't quite get it. So I gave him one last hug.

And yeah, I was so moved, I kind of wanted to cry.

Wednesday, September 16, 2015

"Scripting" and the Bus Don't Mix

Last year didn't end well for Ethan and the bus. The story is too long to recount here (and I believe I already did), but let's just say he was butting heads with a group of kids who enjoyed egging him on to do certain things -- and when Ethan started to refuse to do them, they weren't happy about losing their source of entertainment for the 40-minute ride each afternoon.

One boy in particular -- let's call him "S." -- I just didn't get. He seemed nice enough in the times Ethan encountered him during t-ball and baseball. But in this case S. seemed to be the ringleader, and told Ethan he hated him and wouldn't be his friend, just because Ethan wouldn't act the way he wanted.

One day in the summer while the kids were in swimming lessons I started chatting with a guy on the playground who had a daughter Chloe's age. Somehow the conversation rolled around to the older kids and school, and lo and behold, I realized that I was actually talking to S.'s dad. I figured bringing the whole thing up, delicately, would be my opportunity to set some things straight.

"So, I guess there was some trouble on the bus last year?" He quickly agreed. I gave him a little background on Ethan, on his diagnosis, and how sometimes he'll do whatever kids want because he can see they're getting a "kick" out of it and he doesn't quite understand if he's being completely appropriate. As I talked I hoped he didn't think I wasn't one of those parents who try to blame all of their kids' behaviors on a diagnosis. I honestly just wanted to give him another perspective on the whole thing.

S.'s dad seemed reasonable and reiterated how he and his wife had told their son they better not be getting any more calls from the principal, that that was unacceptable, etc., etc. I left feeling as if maybe, just maybe, we'd avoid some of the worst issues when school started.

But by the middle of August I thought, "Who am I kidding?" and dashed off an email to the principal reminding her of the situation and wanting to know what plan was in place for this year. She wrote back suggesting we find a seat buddy for Ethan and maybe have someone check off a chart for him each day to tell if his bus ride was a good or bad experience so he wasn't holding everything inside for a long time (as he tends to do). Cool. Sounded like a plan.

The first day of school, the first thing Ethan said when he walked in the door was "[S.] kept reaching over and hitting me on the bus. And now his little brother rides with him. He kept sticking out his tongue at me."


Day two, he announced right away, "[S.] is stronger than Jadis (from the Chronicles of Narnia, of course). I know he is. He twisted my arm so much and it hurts really bad."

I asked him what else had happened on the bus.

"I got mad because he was teasing so I yelled, 'Get out of here, you shameless hussy, or I'm calling the police!'"

Another line from the Chronicles of Narnia, The Magician's Nephew. Someone yells that at Jadis when she comes into our world and causes a lot of trouble. I can only imagine how that went over with a gaggle of second graders.

"Then what did he do?"

"I don't know, I kept saying it. And then I was so mad, I was apoplectic, I yelled, 'LOVE ME FOREVER!'"

Also from a book, although I can't remember which one.

"And then," he continued, "[S.'s] brother said 'THAT will never happen.'"



I could just see how this all went over. And I had to admit, yeah, if I were seven years old and some kid yelled out Love me forever! I'd probably burst into giggles. But I know what he was really saying was, I want you to like me. Why don't you like me?

Ten minutes later I was on the phone with the principal. As it turned out the "bus buddy" wasn't going to work because the one "good" kid they'd identified wasn't going to be taking the bus all of the time. And obviously, that probably wouldn't really address the issue.

"We're going to have to put a monitor on that bus," she said, more to her self than me, in a tired voice that said Here we go again.

When I was a kid, even taking the bus to and from a Christian school, there was often a monitor on the bus. Apparently they've gone the way of budget cuts, which is pretty sad. By "monitor" what she really meant was a staff member from school, most likely a paraprofessional, would ride. That was completely fine with me -- although I had the feeling it might have been one of those, "We'll try this for a while and then if things calm down move the monitor to a different bus with problems."

And so, the next day, Ethan came home all smiles. The adult presence serves as the perfect buffer. We're now into week three, and Ethan no longer dreads or complains about the bus (except for the heat, and the fact that it was a half-hour behind schedule for two weeks).

"Ethan," I've tried telling him. "When you quote things from books at people, and they haven't read the book, they don't understand what you're talking about, and they think it's kind of funny."

"But I LIKE Jadis," he countered.

"I know. But they don't know who Jadis is."

I have the feeling this type of issue is going to crop up again and again.

"Mama," Ethan said to me the other day. "You won't believe this, but down deep, deep, in my heart, in the deepest place, I really like [S]." He was scripting from a Ramona book.

"Yeah, I know you do."

"Do you think he likes me?"

I wasn't quite sure what to say. I choose the hopeful route. "I think he does, buddy. I think he does."

Thursday, September 10, 2015

Back to School: A Report Card and A Memory

One week down, twenty-something to go. We have a sixth and a second grader, and things are going well -- with some caveats.

Ethan is "king" at his preK-second grade school this year. Since we were away the last week of the summer and missed the special back to school lunch, his teacher was kind enough to let us stop in the day before just to check out the classroom, his locker, and so on. He's got a good buddy in class this year, and barely any homework yet (whew!). There have already been some issues with kids on the bus (that's a blog post for another day), and I ended up on the phone with the principal by the second day of school. By the next day, a monitor was on the bus, and all is happily quiet (or as quiet as a bus full of five to seven-year-olds can be).

Anna has transitioned from a class of less than 10 to more than 200. She's managed to navigate her new middle school without getting lost and is even opening her locker on the first try. As with Ethan, a staff member was nice enough to let us come in at a different time (due to our vacation) and try out Anna's locker and find her homeroom. She then proceeded to give us a detailed tour of the school. The guidance counselor put her on the same "team" as a friend, and after a week of school, the math teacher recommended she transition to a more advance math (no small feat, the way Anna usually struggle with math!).

It's nice to feel that people are on your side.

A friend with a son the same age as Anna was talking about how this whole middle school transition is bringing back vivid memories of her own middle school experience, and she's started recounting all kinds of stories. I know just what she means. Much to Anna's chagrin, I've started doing the same thing.

It's inevitable. You see, I too came to a large public middle school from a tiny Christian school. I too was the fish out of water.

When I drop Anna off at Sage Park Middle School in the morning, I see myself riding the bus up the hill to M. Marcus Kiley Junior High School. I see myself navigating the crowds with my Trapper Keeper, sporting my button down pink shirt and stonewashed jean skirt from Bradlees. I recall walking under the big banner over our heads that screamed: "Catch the Kiley Spirit!" I remember graffiti-scrawled bathrooms with doors missing from the stalls and overflowing trash cans. I remember the whine of the bell, the crush of people in the halls, and the yells of "FIGHT!" when two kids started going at it in the hall.

I can see, I can hear it all: The kids muttering "loser" under their breath when I didn't know what I was doing in gym class; the long rectangular table where the "elite" group sat in the cafeteria; the old lab lady who hated everyone; the shock of seeing kids pull actual real cigarettes out of their jean purses.

I'll never forget: my social studies teacher who would have spent the entire year teaching us about the JFK assassination; the guy with long shaggy hair and high-topped sneakers who was a relative genius but was rarely actually there; the day we bypassed lessons in Algebra to watch the space shuttle go back up in space for the first time since the Challenger disaster.

Of all the memories, out of everything that happened that exciting, turbulent year, there is one incident that most sticks in my mind.

I remember the moment, when the bullying got to be too much. I felt I couldn't take another day of whispers and hateful remarks. I didn't know what to do. And so I took a deep breath and a deep swallow and headed down to the guidance office.

I'll never forget the signs everywhere that screamed "No Smoking!" Yet the smell and fog of smoke was thick in the air. I sat in front of my guidance counselor, who had deep circles under her eyes and her hair pulled back severely by a headband. She listened. She sighed. She shook her head and shrugged. "I'm sorry," she said. "Kids will be kids. There's not much I can do." After a few minutes, I was dismissed.

I walked down the corridor with a new kind of weight of my shoulders. I knew kids would be mean. I knew public school might be hard. But I wasn't expecting adults to seem hopeless; powerless.

If the adults couldn't do anything, I knew -- except for the conversations I held with God in my head, I was completely alone. I was the ship left sinking in the middle of the ocean.

That moment alone was what most worried me about sending Anna off to this school. And so last night, as we sat at the open house and her guidance counselor talked about wanting kids to feel comfortable there, and safe, socially and emotionally, and about wanting to hear if there's a problem, and addressing problems quickly, I had to be grateful.

No one can completely prevent bullying. Things are going to happen and our kids need to be resilient. Schools can't solve every problem and right every wrong. But no child should walk through the halls of school feeling utterly alone -- as if there is not a single person there who cares or who will support them if they run into trouble. They shouldn't feel as if there is no one, absolutely no one, who's going to at least try.

Thank you, Sage Park, for trying.

Saturday, September 5, 2015

"Problems Must Be Solved!"

I first noticed about a month ago, when we were anticipating thunderstorms and heavy rain in the afternoon.

Normally our kids prefer to leave toys strewn about in the backyard in redneck fashion and an exasperated holler is the only thing that seems to get them to pick up. On this day, however, Ethan had gone on his own and hauled just about everything not nailed down into the garage: trikes, other riding and push toys, sandbox stuff, the whole nine yards.

"We have to be prepared, because of the storm," he informed me sternly.

A few weeks later up in Maine, we were headed out for a walk on a morning in which showers threatened, and again I caught him loading things inside the cabin: namely, outdoor fireplace items like a cooking grate and other fire tools. "Is the grill okay?" he asked worriedly, and I pointed out that it was covered, in case it rained. "But the bottom's not covered!" he exclaimed. He then looked around, running a list outwardly in his head. "Everything is all set," he said, more to himself than anyone. "The hammock is okay in the rain and so is the swing. The grill is mostly covered." He turned to me. "Problems are solved," he said happily.

The next day, a problem very much was not solved. It's quite bizarre the way every person on the spectrum who enters our little camp is drawn to turning on all of our lights (we have a number of old-fashioned fixtures primarily spread across one room) when they get up in the morning. Ethan is no exception, although usually he is flexible. He doesn't have an order the lights have to turn on, and he usually isn't insistent about which lights or having every light on.

Usually. On this day, he wanted to turn on all of the lights on this "tree" of three lights someone purchased more recently, as it provides better reading light than the three wall lights. Blasting all three of these babies, to most of us, is a little much. Especially if you're sitting right next to them. But that day, Ethan wanted those lights on. He needed those lights on. Before we knew it, he was on the floor, crying.

"Problems must be solved!" he wailed, and as he thrashed around, I knew this was the mantra of many, many people on the spectrum. The ones that have to have you say a certain phrase in a certain way. The ones who must have this food but not that food or this brand in that certain wrapper. The ones who must do this before doing that. Each one, even those who are non-verbal, marches to the beat of an insistent theme: This is a problem. Problems must be solved!

"Ethan, why?" I asked him. "Why does this problem need to be solved?" That is always the question, isn't it? Why does one person need you to switch off all the lights and another needs them on? Why must the food be eaten in a certain order, the blocks be arranged that certain way, the toys all be aligned in a row, just right?

I was waiting for a grand revelation.

"I don't know!" he exclaimed. More tears. More frustration.

We didn't let him turn on all the lights. I didn't do this out of cruelty. I just felt as if he has to learn, if at all possible, to sit with that uncomfortable feeling. How can he handle a job someday if he requires all of the lights turned on in a certain way; the seating arrangements just so; the door opened or closed?

And as I hugged him tight, I knew this wasn't just a spectrum problem. It's a human problem. I remembered all the times I've hated leaving the house with spare keys because I couldn't find my regular pair. I've hated the office closing for the day before I could call and resolve the issue. I've hated going to bed when the cat was still escaped out of the house.

In short, I very much do not like the insecurity of not having all my ducks in a row...of not knowing exactly how every aspect of life is going to turn out.

Indeed, I need to learn to sit with that uncomfortable feeling of not knowing, of problems not being immediately solved, too.