Thursday, December 22, 2016

Ethan Meets "Fake News"

A few weeks ago Ethan asked to play on my phone for a few minutes before school. This is a sometimes-privilege granted when he's completely ready for school, chores done, good attitude, etc. He nearly always goes to YouTube and looks up videos about Minecraft.

This day seemed different, however. And while I'd like to say I monitor every moment my child is online (because God knows what's out there!) I don't always see everything he's doing, especially if he's on for a brief period of time. It wasn't until we were walking to school that he sighed, "My greatest wish in the world is to be able to fly." This isn't the first time he's said this, along with sharing his love of bald eagles and how he wants to be a bald eagle -- so he can fly, of course.

But this time there was more. "Mamma, do you know there IS a way you can fly? For real?"

"And what's that?" I asked slowly, suspiciously.

"Well, I saw it on this video..." Warning bells went off. Loudly.

"What video?" I asked, my voice rising.

"On YouTube."

"Is that what you were just doing??"

"Yes. There are these videos, and the people said if you do it you really will be able to fly, and they weren't lying. And they even showed them flying. I swear!"

I didn't even know where to begin with this. "Ethan, what did they say to do?"

"Well, one said you had to think really hard about being able to fly, and drink a lot of water, and then say these words and spin around, and you would really start flying."

Again I was left speechless, and yet it was almost time to see him off to school. How to start a discussion with a very literal child about the evils of the internet, about not everything you see online being true, about special effects and people who will say anything to get followers and about when someone is kidding or doing a little "spoof" versus real life?

All I could think about was when I used to work for the hospital full time, and they had the "Safe Kids" program that was dedicated to child safety and educating people on issues like drowning or choking. They had an ad campaign called "Kids Can't Fly" that highlighted the way some children, in their longing to be superheroes, were actually seriously hurt trying to do things like jump out of windows, believing that yes, they could indeed fly.

"Ethan, I'm sorry, but people can't fly on their own. And you can't believe anyone who tells you that. I need you to come to us always and check before you try something you see online." He said he understood as he headed off to school, but I wondered.

In fact, I fumed about the incident on and off while he was at school. Yes, there are practical jokes and parodies. But where do they cross over to downright dangerous? What if one of these "tip videos" had (even jokingly, which he might miss) told my child to jump out of a window, or do something else that bordered on unsafe?

The first lesson is, of course, to know what my child is watching, or not allow him to watch at all. True. But I can't always be there. Already he has the opportunity to Google sometimes at school. I can't always see what he's taking in.

So, as with all kids but even more so, we have to give him the tools to distinguish between fantasy and reality; to use his judgment; to not take things at face value; to go to his parents or another trusted adult and ask before just believing.

These issues have come up in other ways already. Recently he started quoting some fact that I knew was inaccurate. I asked who told him that and he said a kid in his class. When I told him the boy was wrong, he insisted that was impossible, because this person had told him, and he'd found it online.

Ethan thinks Google is a person. He's not yet completely convinced that the internet is run by people -- people with all kinds of different biases and motives. He sees it as almost an all-knowing God-figure. "Just ask Google," he'll say, not wanting to believe that it's actual people feeding the information TO Google.

Later that day I caught Ethan closing his eyes really tight and saying something. He got embarrassed when he saw me and acknowledged, yes, it was something about being able to fly.

"I'm sorry, Ethan. You can't fly..." I really do feel for him.

"But they said...they promised they weren't lying!"

"I'm sorry, buddy. They were."

I hate that he has to learn this, yet I'm desperate for him to learn this. Such is the world we live in.

To cheer Ethan up about the flying thing, we are seriously looking into indoor skydiving. I told him that IS a way he can fly. Who knows? This could be next year's birthday surprise.

But I'm not naïve enough to think this isn't going to come up again. I just pray, in time, he has the tools, the discernment, to navigate these murky waters.





























Monday, December 12, 2016

That Pesky English Language Strikes Again

I love when kids try out words.

Chloe, lately, is trying to figure out time (not how to tell it, but rather what the different time terms mean). And so she'll randomly throw out things like, "When I was at Grammy's house, five years ago..." which is rather funny, since she's not yet three. Or: "When Anna comes home at 46." Forty-six is definitely her favorite number. And no, it's not because I or her dad are 46 (but that number is starting to look closer and closer).

Ethan tries out words, too, with a few slip-ups along the way. His speech is fantastic. He has come a LONG way from the days when he was delayed at age 2 and 3. His pragmatic language (using speech in the correct context) is really quite good as well, but he has his moments. He tends to use the more formal term for certain things, sometimes. So instead of being hurt, he might say, "I'm injured!" Sometimes I wonder if he gets this from football, They have the injury report, after all, and are always talking about having "an injured player on the field." Thanks to Master Chef he likes to say things like, "Yay, it's time for our entrees!" when we're at a restaurant. These type of things make me smile and Anna cringe. It's so hard to explain to Ethan that the words he's using aren't technically wrong. They're just not typically used -- especially by a nine-year-old.

The other day he asked me what "e.g." meant. He'd seen it in a book. I told him it was like saying, "for example." Honestly, I don't know what e.g. really means. Does it stand for something Latin? Yeah, I was an English major but I don't know.

So the next day in conversation he said something like, "So, if we're going to do something active, e.g., basketball or football..."

"Ethan?" I asked. "Did you just say e.g.?"

"Yeah."

"Um." I tried to think of how to phrase this. "I know it means for example, but it's not something people use in conversation. Usually it's just written in books."

"Why?"

"Why?" I repeated. Darned. Stumped again. "I don't know why," I admitted. "It just sounds weird."

"But what about a.k.a.? People say that? And for example? Isn't it all the same thing?"

Acck. The kid is too smart. "Well, yes...." I conceded. Why? I asked inwardly, shaking my fist at the English language. Why is aka alright but eg is not?

"I love e.g. It's my new favorite word," he said happily. Since then he has started using it all of the time. Well, in context. But I swear he's looking for examples of times he can say for example, via e.g.

"Do you say that at school, to other kids?" I asked him, wondering if they would know what he's talking about.

"No," he said, but he wouldn't say why. That made me wonder if maybe he's making a mental note of the "right" way to say things, if there really is such a thing. But he feels comfortable to say them however he pleases at home.

And that's the way it should be. Family, e.g., the place where you can be yourself. And say the words that sound silly. Even if none of us really know why.








Tuesday, December 6, 2016

The Boss of the World

So Ethan has this new interest in people in charge and "authority."

In some ways it's distain (he came out of Sunday school a few weeks ago after a lesson on the authority figures in his life and declared "I HATE your authority").

I get this. Sometimes for a kid it feels like life is all about many, many different people telling you what to do.

And of course this interest in bosses and being the one in charge has everything to do with power -- which is really appealing to a just-turned nine-year-old boy. Those who wield the most power (aside from parents, who are asking him to do things he doesn't want to do) are to be admired.

Gaining an understanding about authority happens when you begin to see that there is a structure and reporting system or chain of command in all of the entities in this life that either directly or indirectly affect him -- school, government, even church.

This may have begun when we were talking about the superintendent of schools and how he visited Ethan's school one day. I remember our superintendent when I was in elementary school. A stern man with a big balding head, he terrified me.

"Do you know Craig Cooke is in charge of all of your teachers?" I asked him.

"I thought the principal was in charge," he replied.

"Well yes, but Craig Cooke is HER boss," I said. This gave him pause. "Who is Craig Cooke's boss, then?" he asked.

As often happens in these situations, I didn't quite know, which had me tossing around answers without really knowing what I was talking about. This seems to happen often, as a parent. "Umm, the state education commissioner?" I pondered.

"No, the Board of Education!" Ethan replied, as I wondered where he gotten that from (some book, apparently). I wondered: was he right? and then lamented I didn't pay attention more in that State & Local Government course in college.

Despite not receiving true resolution on Craig Cooke's boss, Ethan felt confident enough about the matter to discuss the whole thing with his principal a few days later. Apparently the principal filled in one afternoon for whoever takes the students who walk home from school over to the crossing guard. She and Ethan got to chatting, and, Ethan announced proudly, "I told her Craig Cooke was her boss. But not the crossing guards' boss." (We'd talked about that, too).

I don't know how many times Ethan has asked me who's in charge of the police; the firefighters; the people in a hospital.

Of course when the election came around there were ample opportunities to talk about the way government works (or doesn't) and who reports to whom. Once again he stymied me as we talked about our town's mayor and town's manager. Wait a minute? What's the difference? I'm still wondering, and realizing even now how incredibly dumb and uniformed children's questions can make you feel.

Trying to explain "checks and balances" and the three major branches of government is a bit much for a third grader (and my somewhat lacking store of knowledge). But I've made an attempt, several times.

One day he asked me about the Supreme Court. He loved to hear that it was "the highest court in the land." Even better -- that the president even could not overrule something the Supreme Court decided. "The Supreme Court," I heard him saying to himself, smiling. Oh, the power!

Another time recently he asked, "Is the United Nations the boss of the president?"

"No!" I answered, probably too vehemently (shudder). "The U.N. is not the boss of our president."

"Well, who is?"

"No one, really."

"The Supreme Court is."

"Well, not really. They don't tell the president what to do." I felt another discussion of the three branches of government coming on.

"Wait, I know who the president's boss is!"

"Who?"

"God."

And well, that was that. He has a point. Even when it doesn't feel like it.

It's great when kids make you think, and when kids make you learn, and when they help you remember things that were once more difficult, and yet easier to understand.


"In the Lord's hand the king's heart is a stream of water that he channels toward all who please him." - Proverbs 21:1
































Tuesday, November 22, 2016

The Not-So-Glamorous Life of a Freelance Writer/Mom

The moment I realized I was crying -- outwardly weeping -- because I could not find my sunglasses and I needed to go outside and get Ethan from school and didn't want people to actually SEE I'd been crying was when I acknowledged that yes, it had been a very bad afternoon.

What's worse than a toddler who doesn't feel like napping but rather engaging in destructive practices? A toddler who doesn't feel like napping but being destructive, WHILE mom is trying to do work.

I do have another job, right now, even though I've tried to keep it to a minimum, working primarily around naps and early in the morning. Sometimes this all goes splendidly and I'm living the balanced life of being at home while still using my brain in a different way, and all is good. Other times? Well.

What happened that afternoon? The question should probably be what DIDN'T happen. I desperately needed to be on the phone scheduling things, while Chloe desperately wanted to stay up and wreak havoc. In every room. She left no stone unturned. Books off shelves? DVDs on floor? File folders emptied out and spread randomly all over the dining room? Sure, why not. I could not SEE her bedroom floor. Then, there was the potty no-so-much-of-an-accident. Things get really, really ugly when they don't have a diaper on. The horror! And all of this while I was attempting to reach people who ignored deadlines and were infuriatingly unreachable. Good times.

I always have to add a disclaimer, when people ask what I "do" for a career, and I tell them I mostly stay at home with my kids, but that I'm a freelance writer/editor as well.

"It's not as glamorous as you might think. I mostly write health care articles," I sometimes say, in case their idea of a freelancer is that I'm dashing off magazine articles or possibly novels. Or, maybe they are like my eighth grade self, who figured it just might be possible to stay at home all day, keep an eye on my children, and become fabulously rich writing about young adult characters. I had stacks and stacks of my "books" lying around my room -- stories about "Jessica" and "Tiffany" and the trials and tribulations of middle school.

That vision lasted a few years until career day in high school, when I attended a session with quite possibly the most depressed journalist on the planet. "Don't do this," he essentially told us, which I thought was rather strange on a day designated for kids to explore their dream careers. His demoralized attitude got me thinking, and before I knew it I'd decided to pursue psychology in college instead of journalism. Only, after a year I was disillusioned with too many crackpot theories, and particularly by psych professors who seemed more depressed and disillusioned than that journalist back in high school. So after winning the freshman essay contest, I decided to switch to an English major, which led to everyone in the world asking me, "Oh, are you going to teach?"

"No, I want to write," I'd tell people, which they thought was rather hysterical. Even my advisor, well-meaning as she was, suggested I pursue a health career. That's where the jobs were, she reiterated, and asked if I'd consider becoming a nutritionist. Which -- to this day -- is so laughable I'm not sure how I respectfully exited her office.

Yet somehow I DID become a writer (with some video producing thrown in for good measure), and wouldn't you know, a writer on health care topics, after taking a last-semester internship in Marketing and Public Relations for a large local health system. A year later I was hired, and when I left seven years after that when Anna was a baby, I began taking on projects on a freelance basis.

Which is where we are today, and I am immensely grateful to have a chance to be home with my kids and get to write, and get paid for it (even if I'm not writing books but rather articles about medical procedures). I've learned a few things on this 10-year plus journey through freelancing and mothering. Sometimes, unfortunately, I forget what I've learned, which leads to days like above. But in my more wise moments, I remember:

1) There are days you just have to turn on the TV for a little while for your child so you can get your work done. Your child will not be permanently scarred. You will finish whatever you need to get done infinitely more quickly than with someone tugging on your sleeve and asking for more juice. Again.

2) When dealing with people who are convinced of their superiority (this happens sometimes -- not always! -- with physician interviews in particular) it's always best to admit your ignorance up front. Willingly own your lack of knowledge, and they are immediately disarmed and a bit more sympathetic and patient when you don't fully understand their "medical speak" and ask them to elaborate.

3) When I'm on conference calls and think there could even be a chance of being interrupted by a young child, I give everyone a heads-up. Because there's nothing worse than talking business and then having a little voice pipe into the conversation, "I have to go pee-pee!" This, sadly, I learned from experience.

4) When a big project takes over, something's got to go. In our case, it's the house. I've got not choice but to put some of the less essential cleaning chores on hold. The way I figure: I'd rather my kids recall me putting the household chores aside rather than putting them aside to vacuum.

5) Working from home means never fully escaping your job -- which can be the greatest blessing, or curse. I love the luxury of answering emails at 5:30 a.m. I hate the pressure of knowing I COULD be working on a Saturday, if I really needed to.

There are always going to be days like last week's nightmarish afternoon. I am still trying to get questionable smells out of our living room rug. And I may never publish a novel about Jessica and Tiffany, or have that newspaper column I always dreamed of (who reads newspapers, anyway)?? But I am so glad to be able to do this work thing and kid thing, as crazy as it may sometimes be. Tears and all. I can work in my jammies while sipping tea. How could I possibly not be thankful for that?














Saturday, November 12, 2016

A Visit to Room 2

I'm convinced teachers have one of the most entertaining jobs in the world.

The other day Ethan's class invited parents to come in and hear some of the writing pieces they'd been working on. Wouldn't you know, Ethan was completely fine with this UNTIL we were walking down the street that morning and I was about to say goodbye.

"I don't want to do this. I don't want to read in front of everyone," he said, literally standing at the stoplight waiting to cross the street. Nothing like procrastinating about your fears.

"Ethan, it's okay. You're going to do great."

"My writing is awful! Ask her if this can just be optional!" Now he was really upset.

First, I straightened him out about his writing. It's not awful. Of course, as his parent, I wouldn't tell him straight out if it was, but Ethan writes surprisingly well. His teacher was really amused by some of his stories last year.

But that out of the way, I felt the conundrum again. I think every parent feels this. How do you know when you're pushing your kids too far? You don't want them to think saying "no" to difficult things is always an option. But you don't want them to be tormented with fear, either.

He had to cross the street, so I just called out something about emailing his teacher and tried to act upbeat to cheer him up. When I wrote to her, I said what I always end up saying: that we push Ethan to stretch himself sometimes, and will make accommodations for him, but it shouldn't be the first option.

She said she was fine with having him come up front and if he was still too nervous she would read with him standing next to him. That sounded like a good plan.

And so we arrived at 2:15. Chloe had christened herself with green glitter glue just before we left that would only partially come out of her face and hands. Lovely. We traipsed into the classroom and sat down to hear what was on the minds of 20 third graders.

I love, love, love this age. They are still too innocent to criticize each other's stories or to roll their eyes. They each wrote about a moment that was important to them: sleepovers, Six Flags, trips to visit relatives. I loved the kid who scored "30 touchdowns." He I believe was also the child who recounted the day his dad stepped on the gas instead of the brake and crashed into the car in front of them.

I wonder if his dad knew what he had chosen to write about? And this is when I think again of teachers, and of all of the stories they hear, the statements about home and parents and families that they must take in day in and day out...and try to mask their amusement, or perhaps shock. How much of what they are saying do you really believe, when you are an elementary school teacher? That thought provides a little comfort. I can only imagine...or don't wish to imagine the things my own child has blurted out. Sometimes I wonder -- do they look at us at parent-teacher conferences and think about us pressing the gas and not the brake? Do they constantly have to shake certain images or statements out of their heads? Have they just learned to laugh most things off because much of what a child may say is truth wrapped inside a whole lot of fiction?

One child shared in passing about how messy his mom's car was (as I've written about my own messy car in this very blog, you can bet I was thinking it was only chance that that wasn't my kid -- this time).

And somewhere in there was Ethan's story. He stood next to the teacher (wearing his coat! Of course he wouldn't answer when I asked why he still had it on; it was 80 degrees in there) and she began. He had decided to write about our cat getting run over.

Geesh. Nothing like a really morbid topic to end of the school day. I hoped no one would start crying.

I'm not surprised Ethan would choose to write about that day. It was obviously traumatic. Not only did he have a 104-degree fever but his cat got hit by an oil truck.

It's amazing the way I found myself editing internally as he was reading. He mentioned he was home sick and then that he went to the store before going to the doctor.

Wait, that implies he really wasn't THAT sick. Or does it imply I have no problem taking my child to stores when they are sick? Wait, we only went to the store to get medicine AFTER the doctor!

Then he talked about the moment I looked out and found our poor cat lying near the street. "And his eyes were OPEN!!!" he had written.

Eeth, you kind of left out the part that I thought he was sleeping, and then I noticed he wasn't blinking. But then again, that was even more creepy. God forbid the kids go home with nightmares.

He concluded it all with, "And we will never forget that fateful day." Which sounds an awfully lot like something he heard from somewhere. I couldn't help but almost start laughing, which sounds really awful when the kid just read about the day his cat died.

Then we all had some snacks and it was time to clear out of there as the end of the school day was fast approaching.

I left thinking, as I always do, that I don't know how teachers do it, day in and day out. I'd be so exhausted by the end of the day I probably wouldn't be able to do anything but meet my basic needs. But they also must have a wildly entertaining time of it sometimes. Maybe that's just a small part of what makes it all worth it.






























Wednesday, November 2, 2016

The Comparison Game

Lately Ethan has discovered more than ever before that there are very real differences between himself and other people -- and I've found myself quoting all of those parental clichés that are annoying to hear when you're a child.

Let me be clear -- I don't mean differences that have anything to do with autism, but rather Ethan is noticing that different kids have different rules, different talents, different strengths and weaknesses.

A lot of this has come out, ironically, due to another kid in Ethan's class who is on the spectrum (I believe he too shared this information with his classmates last year). We'll call him George. Apparently they get along well enough in real life, but for some reason Ethan is often commenting on George. First it was the Doritos. Ethan was furious because George gets Doritos every day for a snack. Doritos are Ethan's all-time favorite food. If we had them in the house all of the time, they wouldn't last long. We try to save them for parties or other special occasions. Ethan was perfectly fine having fruit snacks at school -- until he had to sit there and watch George tantalizingly crunch into Doritos every day.

One afternoon after a particularly rough day that also involved an unsuccessful Minecraft venture Ethan started yelling about how unfair it was, that every day George ate Doritos, that I gave him horrible food, and that I was yes, a "Meanie." I wonder if I should consider that a badge of honor. He also gave me an earful about another friend who had a TV in his room, and a friend that got to play Wii before school.

"I'm sorry you're upset," I told him, "but that's the way it goes sometimes. Different families have different rules." I may have also thrown in the "life isn't always fair" line, trying to break some kind of record for the most clichés packed into one sentence.

The thing is: it's true, and there's no way around it. We're not putting a TV in his room; if he plays Wii in the morning we'll never make it to school; he doesn't need Doritos every day. Although I did go out not long after and get some "healthy" ones from a local company that were actually darned good.

This comparison stuff hasn't just been about material things, and it hasn't just been about Ethan feeling bad comparing himself to someone else. The other day he blurted out, "No offense, but [George] is a baby. He's still reading Berenstain Bear books at reading time. And he goes to bed at 7:30 at night."

Side note: I just love how he starts off with "no offense," as if to say "I don't mean to hurt your feelings, but I'm about to trash you." I hope he's not copying that from me. Eek.

So then we had another talk about how everyone is at a different level and has different strengths and weaknesses (never mind that he reads Berenstain Bear books for fun at home!), and how some people need more or less sleep and that doesn't make them a "baby," and most importantly how would he feel if people were calling him a baby because of something he said or did? It saddens me to write this, but there may be kids doing that right now in his class, and he just hasn't noticed.

I've been thinking a little more about this whole comparison game. I know it's part of human nature and human development. In middle school it gets even more intense. Everyone has to know what everyone else is doing so they can do likewise, or better. Anna was telling me how utterly mortifying it was last year to watch a girl show up on Halloween in a bumblebee costume -- the only person to arrive at school thinking it was okay to dress up. My visceral reaction hearing the story (I felt my entire body cringe) reminded me of how often I too still struggle with comparing myself to others or appearing different.

Yes, kids will be kids, and part of growing up is discovering your life and family are different than other people's. Sadly, part of life in our culture also seems to be realizing there is a norm, a place where you "should" be and other areas where you should never tread, lest you want to invite ridicule. When that's where we learn to fix our gaze, it's time to take stock.

There's that saying that "comparison is the thief of joy." It's also the mirror that reflects when we aren't really confident in who we are.

I thought about the girl in the bumblebee costume. I wondered what it would be like to walk the halls hearing whispers and giggles and just.not.care. I had to correct myself.

"Anna, we're laughing and feeling sorry for that girl, but I think we need to be more like her," I said. I thought about the message at church that Sunday from a young guy who really has a passion to see people touched by God. He'd had the guts to go up to people at a mall and ask to pray for them. And a number of them said no. Yet he kept asking, because he cared about other people more than he cared about their opinion of him. Could I do that? Could I, the one who is still stressed if I say the slightly wrong thing or am a little over or under dressed to a party?

Comparison steals our freedom. Someday someone might snicker at Ethan and his unconventional way of doing or saying certain things. It's comparison that wants us to meld into the crowd like a chameleon.

I hope each of us will aim to be the bumblebee.












Thursday, October 20, 2016

The Best Encore Performance Ever

Ethan, almost 3, with one of his therapists, Amber
Back when Ethan was almost exactly the age Chloe is now, before he started preschool and when he was still receiving therapy at home, we decided it would be a good idea to have him begin attending one of the playgroups held each morning in the town's schools. It would be good preparation for preschool, his therapists suggested, and one group was in the actual school he'd be attending, which would help familiarize him with it.

Yes, all of us thought this would be a great idea -- except Ethan. Ethan wanted nothing to do with the playgroup. The set-up was simple: moms or other caregivers and their babies and kids up to age 5 would come play for about a half-hour. Then everyone would pick up, have circle time, do a craft, eat a snack and leave.

Simple was not in our vocabulary those days. The first week it took 15 minutes to get him in the door. Once he finally inched inside, Ethan wanted nothing to do with the toys. The sink, microwave and light switches were much more appealing. When I'd convinced him he could NOT play with any of the above, he eased his stress by smushing his entire body onto the floor and pushing himself along, like a snake.

I looked at other parents actually able to converse while their kids occupied themselves, playing contentedly at a table with blocks, and getting up eagerly to go sit for circle time, and told myself I was never going to take small moments like that for granted again. This playgroup thing was HARD. I was drenched in sweat from the effort of helping him keep it together and not run out of the room.

The next week I came with reinforcements. One of Ethan's therapists, Amber, attended the group with us and was able to give me some pointers and help Ethan calm down a little. He was just ever-so-slightly better. Another godsend was the playgroup leader, "Ms. Betsy" (a legend in town to this day!). I'll never forget her own patience and understanding, from her warm smile and greetings to Ethan (which would often go ignored) to the little ways she tried to make him feel more at ease.

Every week for the two months leading up to him starting school went on like this. Playgroup was, well, work. Ethan paid no attention to other kids. He would rarely play with toys except for Play-Doh and puzzles. We got him to ease closer to the circle but never fully participate. Pushing his body against the floor (now understood as a definite sensory-seeking behavior) was still a preferred activity. I wondered how in the world he was going to do in school when he'd be ask to sit and focus for much longer.

Of course over time Ethan did start school and did do well. The next year when he switched to afternoon pre-K we returned to a few of the playgroups and he coped markedly better. By then I had a better handle on the areas where therapy and school had really helped him mature (self-regulation; focus) and which areas would most likely always be a struggle (creative play; initiating social interaction). Ethan went on to graduate from the playgroups and start full-time school, as all kids do, and we left them behind until Chloe and I began attending together last year.

One of the groups we attend regularly is at Ethan's new school this year, and when he found out that kids can earn tickets for good behavior and have a chance to read books during story time to the playgroup kids, he was on a mission. There was nothing he wanted to do more than read to his little sister.

Last week, less than two months into the school year, Ethan earned enough tickets to be a playgroup reader. He brought two books about pumpkins home to practice. I talked to him about remembering to turn the book around and read loudly so the littles ones could see and hear the story. And on Monday morning, Ethan arrived in the room with the books in hand and a big grin on his face.

And yes, I may be biased, but I have to say he did a pretty darned good job. An amazing job. I couldn't stop smiling. "Ms. Jen," the playgroup leader, mentioned that it was the first time she'd ever  had a child who'd once attended her playgroup come back and read to the littler ones. If someone had told me this six years ago as I held Ethan to keep him bolting out of the playgroup door, I have to admit: I'm not sure if I would have believed it. But here we are, by the grace of God.

Every once in a while I see other kids with similar struggles at playgroups and their moms or caregivers who are struggling with them...struggling to get their child to pay attention, not wreak havoc, and sit still enough to take part...or struggling to not feel frustrated or exhausted because their child isn't like a typical kid and this shouldn't be so hard. I am glad that my experiences with Ethan have fine-tuned my radar. If the opportunity is right, I do what I can to smile, to encourage, to let them know they are not alone. The toddler and preschool age is tough -- for all kids, and particularly ones on the spectrum. Sometimes it's very hard to believe your child's behavior is going to get any better, or any more calm. I know every story is not exactly like Ethan's. But I also know that with time and therapy many behaviors DO improve.

I try to remember to be Amber, the therapist (Where are you now? It's been years!), to be Betsey with the kind eyes. Someone might really need a dose of hope.



Ethan reading to the playgroup, feeling proud, and showing his sister some love

Friday, October 14, 2016

The Lost Art of Pranking

"Mamma, do we have a funnel anywhere in this house?"

We'd just finished dinner. Ethan's soccer practiced had been cancelled and he had a gleam in his eye. The request piqued my interest.

"Why do you want a funnel, Ethan?"

"Because I want to do a prank." He'd just been reading a Captain Underpants book. Don't ask, but apparently Captain Underpants is big with boys his age...and also provides plenty of fodder for kids interested in pranking others. I'm not so sure this is a good thing.

"We don't have a funnel anymore, Ethan. Or maybe there's one somewhere in the garage. You're not going out there to look for that now." It was almost dark.

I heard him rummaging around but was focused on cleaning up the dinner dishes. A few minutes later, he called me.

"Okay, I'm ready to do my prank!"

"Um, Eeth. Usually you don't TELL someone before doing a prank. It kind of ruins it."

He ignored me. "Walk past the closet door!"

"Okay," I sighed. "Here I am..."

He burst out of the door. Something wet that smelled exceedingly of fake pumpkin hit my face. Febreeze.

"Agggckkkkhhh!" I yelled. The small headache I'd already had grew exponentially. "What are you DOING?" I tried to calm down as he stood there looking at me serenly.

"Ethan, if you're going to do a prank like that, you can't spray something with chemicals in it in someone's face. That's dangerous. You have to spray water. Pranks are supposed to be harmless."

He put away the Febreeze and was suddenly outside in the growing darkness, looking for something.

"I wanna do that!" Chloe yelled. Chloe's always yelling that. A few minutes later he was back, with Chloe, in the bathroom with the door closed. Water was running. I had just cleaned the bathroom a few hours before.

"Guys, you need to get out of there!" I urged.

"But I'm doing my prank!" he yelled. A few minutes later, he commissioned me to walk by the closet again. This time he accosted me with two water guns...the big kinds, that release a whole gush of water.

"Hahahah, gotcha!" He grinned. I looked down at my clothes, still damp with Febreeze; now with water. In the bathroom the sink was half-full with clogged water and bits of dirt and mud from outside. My clean bathroom. Sigh...

"I wanna fill that with water!" Chloe was yelling.

"No, these are DONE for the night," I ordered, asking Ethan to put them back outside. When he got back in, I told him he needed to do his nightly reading. I was about done with pranks for the night.

"BUT...I was wondering. Do we have a long, thick rope?"

Here we go again. I shook my head.

"How about a short, thick rope?"

Anna appeared. "Let me help you Ethan. I know how frustrating it can be to have an idea but not be able to find the products around the house." Which I thought was quite charitable of her. Except I didn't even want to think about what he'd be using the rope for. She pulled out the proverbial "junk drawer" in the kitchen, which then almost crashed to the floor. Something is wrong with the drawer, most likely because so often children are digging in there looking for treasures like thick ropes.

Alas for Ethan, there was no rope to be found. He got working on something else in the other room. There was more suspicious silence. Silence and children never go together, unless they're reading.

"Mamma, come see my magic trick!" He held out his hand, hiding his thumb. "See my thumb is missing, and I will make it appear. Something was poking into his brand new shirt, under the sleeve. "See how this screw is going right through my hand..." He was pressing a very sharp screw right into his shirt.

"STOP!" I cried. "That's a brand new shirt!"

"AND HERE'S MY THUMB! IT APPEARED!" I think he was looking for applause. I tried to be enthusiastic while simultaneously cautioning him that he could not do tricks that involved sharp items.

"I'm painting, I'm painting," I heard from the other room. Chloe had searched through the craft supplies and was dolloping brown paint all over a paper. At least she had remembered to paint paper instead of the table. Somehow an incredible amount of paint was smeared into her hair.

Deep breaths. "Ethan, you need to do your reading. Now. Tricks are done for the night." A part of me felt bad. We ARE always encouraging him to leave his screens behind and try new things. But I was DONE.

Into the bath went Chloe, after I attempted to wash off some of the paint in the sink. Brown flecks danced with the dirt from the squirt guns. In the bath, too. Brown paint everywhere. My nice clean bathroom. Well, for two hours clean.

Ethan went to read. Chloe got clean. And I remembered why I always feel so tired once we hit about 7 or 8pm. And then I had to laugh.




























Thursday, October 6, 2016

Now I Know What Happens When You Lose Your Child at Target

This incident happened a few weeks ago, so I've had a little time to, I guess you could say, recover.

This is what happened: After Ethan finished his soccer game two Saturdays ago we headed to Target (along with Chloe) to pick up a few things. Dan and Anna had other plans that morning.

After we walked in, Ethan clumping with his soccer cleats, and took our first turn towards toiletries, Ethan asked if he could go to the toy section. During the summer, I would let Ethan and Anna go off without me for a little while and head to that part of the store. I'd wind around and meet up with them a few minutes later. Ethan would always, and I mean always, head over to the WiiU console they have set up over there and start playing, with Anna just a few aisles away.

There have been a few times Anna hasn't been with us when Ethan asked to head over there on his own. With trepidation, I said yes -- and tried to make sure we hurried over there even more quickly than usual. The few times he'd done that, he was, of course, at the WiiU playing.

So Ethan headed off to the toy section, as I called out, "Don't leave that area!" It was the very last thing I said to him. You can see where this is going.

Chloe and I picked up some of the things we needed at the front of the store. Only, we were moving more slowly than usual, because now Chloe has decided she doesn't like to ride in the cart. She's pretty good in the store, but she is a dawdling toddler. As a result, getting back over to the toy section took a bit longer than I would have liked.

Side note: I realize there are some people who will not approve of my decision to leave Ethan alone in the store at any time. I understand that; it's one of many reasons I wasn't particularly eager to write this. But I also know that lately we've been trying to extend his "leash" (for lack of a better word) just a little. He's been great in supermarkets, finding food for me and promptly returning. We've had many talks about strangers or "tricky people" to the point of almost scaring him. And he's such a darned creature of habit with that WiiU I honestly didn't think letting him head over there was THAT big of a deal.

We walked up to the WiiU. He wasn't there. My immediate thought was to check the Minecraft aisle, his second-favorite spot. Nope. Empty. My heart did a little skip.

Next I checked all of the toy aisles, you know, in the department I told him not to leave. Nothing. My heart started beating faster. It's no secret I've struggled with anxiety for most of my life and have an extremely overactive imagination. I had to use every ounce of strength to slow my thoughts down for a moment and just THINK.

The bathroom. I wondered if he'd decided to walk down to the restrooms near the store's entrance. Normally he uses the family restroom. It was empty. I knocked on the door to the men's room and called his name. Nothing.

Well, maybe I missed him and he's already back at the toys, I told myself, walking faster and faster. Chloe kept protesting, so finally I plopped her into the cart. She started screaming as we pushed way faster than normal through the aisles. People were starting to stare.

The toy area was Ethan-less. I wondered if he went to look at the Halloween costumes, so we whizzed over there. Nope. I pushed randomly down aisles, calling him. Chloe joined in, too.

There are times when I wish I was one of those people who could maintain calm, give off a little chuckle, and just think, "Well, the kid's got to turn up SOMEWHERE around here."

But no. No, I am the one whose favorite book throughout high school was The Year Without Michael, an acclaimed young-adult novel about a 14-year-old boy who just disappeared one Sunday afternoon walking to his friend's house. They never found him.

Wouldn't you know, I had just come across that book, plunked high on a shelf, a few days before. The scenes ran through my head.

In retrospect what I should have done next was probably calm down and take a very careful walk through every aisle of the store, calling Ethan's name constantly. But no. I suddenly had The Year Without Michael drilled into my mind. Flyers on telephone polls. TV news. Police interviews.

This is what they call, in the behavioral health world, "all or nothing thinking." It's not healthy obviously. It's also a very hard habit to break. Especially if you've been doing it for nearly 40 years.

We pushed past about half of the store as I called Ethan with of course, no response. My next thought was to go to customer service and tell them I couldn't find my son. I figured (silly me!) that maybe they would overhead page him, tell him his mom was looking for him and to report to the front of the store or something.

"You can't find him?" the woman at the desk asked again, to be sure. Then she took out her walkie-talkie and started radioing someone. "Hey, we have a Code Yellow."

I have never seen the team members of Target act with such military precision. "Post someone at the doors!" I heard the radio crackle, and two employees appeared out of nowhere, blocking the exits. Several others took up posts all along the front of the store, near the Starbucks café and bathrooms.

"What does your son look like?" someone asked.

I can't believe this is happening, I thought, as I stuttered that he had dark blond hair and was wearing his soccer uniform. Cleats. I wondered if the police were going to appear. I saw myself being interviewed by the news ("And the last I saw of him, he was still wearing his soccer uniform"...).

Two other employees appeared and said they were going to comb the store for him. They took off after getting a description, and I stood there with Chloe and waited. I wondered if I should call Dan and tell him I lost our son. I wondered: could someone, some awful freak, could possibly have ushered him out of the store? Adam Walsh, Adam Walsh, ran over and over again in my head. Of course we are all familiar with the story of the little boy whisked away from a store when his mother turned her back, and later murdered. His father went on to launch the show America's Most Wanted.

This all sounds rather comical in the retelling, but I think most people realize that it's not at all. Not when you live it often. Not when you often know what you're supposed to do but your mind gallops off in another direction almost before you know what happened.

There is a Bible verse that talks about taking every thought captive and making them obedient to Christ. Basically it relates in a very real way to learning how to train your mind to not immediately chase down rabbit trails. It's the antithesis of "all or nothing thinking." It also is a discipline. And for some of us who have trails well-worn with bad habits, it's not as simple as quoting a Bible verse and going on your way. It's as hard as training for a marathon, in some respects. Sometimes anxiety really just does feel easier.

But I knew, in that moment. I had to stop. This was completely out of my control. I whispered a prayer, staring at the scores of people unloading carts, pushing their way through the aisles. I prayed and prayed because I knew there was nothing else I could DO. And then, for a few moments, something happened. The pounding of my heart and of my thoughts faded to something dull and almost unrecognizable. I felt it. Peace.

A few minutes later the two employees who'd taken off to search appeared in the distance, with Ethan walking between them. He was completely oblivious, meaning he had no idea how worried I was or that the store was up in arms looking for him. Where had he gone, by the way? To look for Minecraft books.

"But I told you not to leave that section!" I exclaimed.

"I thought the books WERE still in the toy section," he said, maybe because sometimes Anna went to look at them.

I thanked the Target team profusely, and everyone went back to their regularly scheduled Saturday morning.

But I was bothered. I felt provoked. My nerves felt jittery for hours after. And after catching a glimpse, even momentarily, of what it felt like to have peace in the midst of a storm, I knew I wanted more.

This is not so much a story about losing your child in Target. This is a story about working on overcoming anxiety...or maybe, learning how to better respond to life's curveballs.

I stepped back and realized: There were things I could have done better, but at least I was trying. Any parent would have had at least some level of freak-out.

This is what we must keep doing: we must be kind to ourselves, and we must keep trying. God knows: we're fallible; we're mere dust. I'm thankful, as the verse says, that we have a high priest that sympathizes with our weaknesses, because this one's a doozy.

But I'm not giving up.























Thursday, September 29, 2016

Little Victories

We were having a rough morning.

It all started when Ethan got extremely frustrated when we told him to turn off the WiiU the day before and lost his temper. Badly. Every time I see something like that happen, warning bells go off in my head. I think of all of the articles online that tell us that too many video games are turning our kids into monsters. Then I also think about the fact that Ethan isn't every kid and he may need them a little more than average. Finding that middle ground is always a dance.

But being out of control just can't be acceptable, because a lost temper at age 8 can morph into something much scarier at age 16. So Ethan knows if he has big trouble transitioning there will be consequences. The worst consequence of all, of course, is no Wii the next day -- which is exactly what had happened, and exactly why the next morning Ethan was having trouble getting out the door.

"I can't go to school. There's nothing good about this day," he kept telling me. He asked me if I'd change my mind. He insisted he had to have Wii or he couldn't get through the day. He begged, if we wouldn't give him Wii, if we would at least tell him the screensaver password for the computer. He's always trying to figure that out so he can sneak onto it when we're not looking.

The answer, of course, was no. The questions and demands kept coming, and we were starting to border on being late. These days Chloe and I walk Ethan down to a major intersection where Ethan crosses and heads over to the school. The process takes five minutes. If we could ever get out the door.

"Ethan, you're letting Rock Brain win," I told him, bringing up a character he's learned a lot about from the Social Thinking curriculum in social skills group. Part of the Social Thinking approach introduces a cast of characters (think superheroes and villains) called the Unthinkables that, according to Social Thinking's website, work to "distract, disengage, and otherwise detour children in their efforts to think about others and use their social thinking abilities." Rock Brain is one of them.

"And I'm Glassman," Ethan acknowledged quite willingly, referring to the guy who overreacts to situations. In Social Thinking, kids learn that they can be "SuperFlex," or the superhero in their minds that promotes self-regulation, social thinking, and related social skills. In kid terms: SuperFlex can beat those bad guys up.

And that's just the thing. I love the SuperFlex and Unthinkable concept. Ethan does, too. But when we start talking about it, I feel as if we're dancing a fine line. Now that he knows about his autism, I don't want to think that he's at war with the autism inside of him. But I also don't want him to think he's completely helpless when he starts feeling out of control.

It doesn't help when he at times uses his own dramatic language to describe what's going on. "I can't help it," he said one day. "I'm giving in to the dark side. I don't want to do the right thing."

What always seems to happen is to cajole him back. "Luke (Skywalker), Luke, don't give up! Don't give in!" I'll tell him. "You can win!" Or, when we're talking about the Unthinkables, I'll encourage him to fight back. He loves battles. He loves good vs. evil. He loves to feel like the hero, i.e., Superflex.

But again, there's that thing. Evil. The Dark Side. I always wonder how to approach this in a way other than that he's slaying his autism dragons. The best solution I can come up with is to talk about the way we ALL have Unthinkables. It's not an autism thing. It's a human thing. Some of us may struggle more than others. But we all need to work, in some way, on having more self control...or not getting distracted...or not bossing others around.

And some days, yeah, we just feel like giving in to our more base instincts.

"I'm not Ethan, I'm Rock Brain," he announced, slowly getting ready to head out the door. "Ethan's too weak to fight him." We trudged out the door and across the street.

I hated to see him head off to school upset. Isn't that the worst way to start the day with your kids?

"I'm sorry you're still Rock Brain," I told him. "Tell Ethan I still love him and I can't wait to see him later."

He worked on wiping his eyes. We had reached the place where he needed to cross.

He turned at the last minute. "Okay," he said slowly with a sigh. "I'm Ethan again!" Then he gave me a hug before he had to cross.

And even though I knew we would fight these battles all over again, that we all will fight these battles again and again and again, there was no denying: that morning, we'd had a victory.


For reference, these are the original Unthinkables:










Thursday, September 22, 2016

The Power of Not Knowing

The day Ethan was diagnosed with autism, I had a brief urge to -- despite her kind, warm, thoughtful demeanor -- slap the developmental pediatrician across the face.

That sounds awful, I know. But until then, perhaps, I didn't know how much of control freak I truly was. I wanted, I desperately needed to be in control, and the thing was, she wouldn't tell me how this was all going to turn out.

I wanted to know, immediately: Would he talk more? Become conversational? Attend regular classes in school? Make friends? Find a job? Go to college? Get married?

And of course she couldn't tell me that. She could only speak in careful, measured terms about there being no way to know this early on what the future held, to bring him back in a year to evaluate, to get him started on therapies, and that he had some good early skills that kept him, at that time, out of the "severely autistic" category.

This infuriated me. I felt as if I was being given platitudes, when as I look back seven years later I see it was simple truth. Every child is different. Every strain of autism is different. Everyone responds differently to therapy. Some kids regress and others soar ahead. She didn't really know, and giving me any sort of detailed prediction would have been doing us all a disservice.

What every parent wants when they get a special needs diagnosis for their child is to know that this is all going to somehow work out.

What every parent wants is hope. I was going to title this "The Power of Hope," but realized that wasn't completely accurate. Yes, having no hope is a tragedy. One of the worst things you can do is rip hope away from a parent early on in a diagnosis.

But blind hope in these situations can be unhelpful as well. Hope with disregard to any facts can lead to false hope and living in denial. And desperate hope can lead down the path of "I must do everything in my power to cure my child."

No...hope isn't quite it. What I've found over time (and am learning every day, in all sorts of circumstances that have nothing to do with Ethan) is that there is actually power in not knowing how things are going to turn out. There is power in maybe.

Maybe my child isn't a typical kid...but maybe he can make great strides and surprise us.

Maybe my child will have trouble making friends...but maybe with effort we can help him learn to better relate to others and develop relationships.

Maybe my child will go to college...maybe he'll do something else completely amazing.

Maybe he won't amaze us but he'll be happy, and we'll learn more about ourselves than we ever thought possible. Maybe we'll discover more deeply an unconditional love not based on what our child ever accomplishes or doesn't accomplish.

Maybe we'll try this therapy or that plan and it will help...maybe there's something else. Maybe there's no one answer in this autism puzzle, but thousands upon thousands.

Maybe it's okay to admit we don't know what's going to happen, because really, whether our child has special needs or not, we were never fully in control anyway.

What I would whisper to my self of seven years ago, sitting in the hall outside Dr. Milanese's office as she flipped through papers and spoke in clinical terms, is to not give in to rage or desperation. By avoiding prognostication she was not playing a game or toying with me. She was admitting she is a doctor, yes, but human as well, and that autism is in no way a condition of absolutes, that it has never been about concrete numbers akin to cancer survival rates.

I would tell myself, I still tell myself, all the time, that to truly live you must live in now rather than taking up residence in the past or future.

I would tell parents who are new to this that, yes, unbelievably, there is power in not knowing. Not knowing relinquishes you from the weight of fixing everything. Not knowing allows you to simultaneously dream and grieve. Not knowing how this is all going to turn out forces you almost by default back into the present. The future is too murky to dabble in for long.

When their child is older, when they are years into a diagnosis and therapies and school and successes and dreams still not reached, this will all become more clear. There will be a time to plan; to fully accept. But the time is not in the doctor's office, five minutes into this whole thing.

No. That's the time to let go.











Thursday, September 15, 2016

Everyday Miracle

The other afternoon I looked out and saw Ethan running through our backyard with two other boys who live in neighboring houses. They were all chasing each other with giant sticks, yelling like wild men. I felt as if I was back in my childhood, back momentarily in a time when kids more readily ran through each other's yards, stayed out until twilight, and dirtied themselves in the woods. At one point (before my chiding) the hose came out. Then they were apparently throwing Pokeballs at each other. This went on for what had to be close to two hours.

In addition to the backyard shenanigans, Ethan has been begging me for weeks to set up playdates with two OTHER boys, close friends he's known since preschool. Now that school has started up again he tells me the sports on the playground have, too. Some days at recess he and a small group of boys find something to play. Right now it's football.

These are the moments I can never take for granted.

We all know the social piece is hard for people with autism. More than that, sometimes hanging out with other kids isn't something a kid on the spectrum wants to do. They're happy playing alone, and in those times it can be harder on the parents. Or worse, I think, is when a child really WANTS to play with others but doesn't have the skills to get along appropriately without being teased or misunderstood.

For a long time Ethan fell squarely in the category of not really caring about playing with other kids. While he didn't exhibit the kinds of behaviors that really make a kid stand out, he saw no problem with just going up and down a slide over and over again.

I learned you cannot make a child care about playing with other kids. Ethan, over time, learned that he really liked his two buddies from preschool. I'm sure it helped that both are a bit unflappable and forgiving...happy-go-lucky types that weren't about to throw in the towel because Ethan didn't always want to play THEIR game. For two solid years we spent many, many afternoons on the playground after school. And somewhere along the way we realized Ethan was a more social person than we had given him credit for. He just needed time. He needed us to stop pushing. And he needed playmates (and parents!) who could sometimes be as flexible as we often demanded him to be.

I don't know what friendships will look like, as he grows older. I don't know how the social piece will pan out. I just know that right now, there is no sweeter sound than hearing a gaggle of boys yelling and laughing. I look outside and feel incredibly blessed. When we moved into this neighborhood, almost all of the houses were filled with older people. Now there are boys his age right next to us. And I think -- how blessed has he been to be placed with two awesome little guys with two wonderful families, year after year, class after class in school? They're not always together, but even if they are not in class, they remain close, even as they've moved on to the third school since they've known each other.

Sometimes I just don't know what to say. So I will end with this, at the risk of appearing as if I'm wagging my finger and nagging. Forgive me, if I do. If you have a child who is running around your house with friends, making messes, inventing crazy games, taking stupid risks, and generally creating havoc, try to take a deep breath. You are living a sweet moment that may only appear that way in retrospect. You are witnessing a milestone that seems for many kids close to effortless -- making friends, making human connections -- but is actually yet another everyday miracle.


Thursday, September 8, 2016

When Your Kids Become Actual People

I don't write on this blog as often as I used to, and for that there are many reasons. We are no longer in the early days when things were changing so constantly for Ethan. There was always a new challenge, a new milestone, even a new therapy technique or idea. Now we're kind of staying the course, slow and steady, and while it's not all rainbows and butterflies, he's certainly doing very well. For that I am very thankful.

There's always just, well, life...and I guess I'd say priorities. I do my best writing in the early morning. But I like to save my devotional time for the early morning. And if I have freelance work, I often write then. Add that to the everyday business of marriage, three kids, and trying to connect with friends and fit in a few other hobbies when I can, and yeah, the blog gets pushed aside.

But the biggest reason ironically is one I never considered, when I started this blog. How I wish I did. When I began writing about Ethan's experiences almost seven years ago, I have to admit I was still very naïve about the internet, security, privacy, and sharing personal information online. Social media was just becoming a part of my life. I didn't even get a smart phone until about three or four years ago, and that was only because my other one died.

I would have done this all differently. I would have given Ethan an alias. You know, the whole "names have been changed to protect the innocent" deal. Or I wouldn't have shared publicly. I would have kept a journal just for me, for my family, to look back at sometime down the road. I guess what happened is that I stumbled upon some other autism blogs that I found to be very moving, and helpful. And I thought -- I'm a writer. Why don't I blog, too? It'll be a great outlet. Maybe I'll help someone else, or help someone else better understand Ethan.

And as with most human endeavors, there was that mixture of pure vs. more self-seeking motives. Who doesn't like to receive good feedback and validation?

For the longest time, I swept all of these feelings about what I was actually doing with my blog a little bit under the rug, but then something happened. My kids grew older. Anna started voicing clear opinions about, for example, not wanting me sharing most pictures of her on Facebook, and not wanting me broadcasting things she was going through to the unseen world. I do my best to respect that. Usually.

And now Ethan has started to do the same thing. Not only that, but Ethan now understands that he is a person with autism. He may not quite grasp all that entails, he may not see himself as someone who technically has "special needs," but still: he knows. And just as kids as they get older get more private about their own bodies ("Stay out! I'm changing!"), he has become a little more private about the quirky things that make him, him. They are not something he hides. But some are more like familiar jokes or discussions within our family. It's almost as if we have our own language, sometimes.

I know the "scripts" he likes to run through with Chloe, for example. He knows they are scripts but can't always explain why he likes them. He's not embarrassed about them -- yet more and more I'm feeling he IS wary of many people he doesn't know reading about them.

The time has come to tread more lightly.

I think I will continue to blog. I don't always write about Ethan, after all. There are more than enough mom-failures to share. And I think there is a way to continue writing about Ethan in a way that helps people to understand him and autism in general. It's just that I have to be more mindful. We all do. He is a person. He has feelings. He is never a punchline or a freak of nature. The same goes for living with a middle schooler! They may befuddle us sometimes, or humble us, or teach us, or frustrate us, but they are people who someday will be adults. They don't need their lives laid out for the world to see. It's hard to believe sometimes in the culture we live in, but some things truly are better left unsaid. Or unpublished.







Monday, August 29, 2016

New Season

The sun is setting earlier in the evenings now and the mornings have that dewy, cool, earthy smell that reminds me of a hundred early fall mornings when I tramped to school as a kid, metal lunchbox banging against my kneees.

We've gotten the school supplies and I've broken up 3,742 arguments about minutiae ("Anna is blocking the air conditioner vent!" "Ethan is doing that weird things in his throat to irritate me!").

We consumed what had to be more than 30 ice cream cones and jumped off the dock into cool Maine water twice that.

We aaaahed at sunsets and slapped at mosquitoes and licked melted marshmallows from our fingers.

I love, love, LOVE summer. And fall. Spring. And I even have a soft spot for winter, when it doesn't drag on endlessly. The seasons are beautiful. It's one of my favorite things about living in New England. The seasons set the pace of our lives; they clearly delineate times of change. They are especially sweet because they don't last.

Summer ending, school starting, leaves every parent I know with mixed emotions. We can't wait to usher them out the door and still want to hold them tight. I'm no exception. Whoever said, about parenting, that the days are long but the years are short was exceptionally wise. Sometimes the only way to get through a day when the house looks as if it's been bombed and everyone's crying is to remember to see life not always through a microscope but rather a telescope. These "long days" with kids and scrapes and tears and homework papers seem bigger than they really are, but the days that feel so far from our grasp, the college dorms and quieter homes and little people turned actual adults are just in front of us, not galaxies removed.

New is exciting. New is scary. This year Ethan is starting a new school. This is his first year as a child who is not a special education student in the school system. Anna is going into seventh grade. That is two years removed from high school. High school! Chloe just missed the cut-off for preschool this year. But this time a year from now she could be going to school every day, too. There are days, yes, that I wish she was. Then of course, there are moments when that seems frightfully close, and I want to keep her right by my side. The littlest.

Every year at this time I smile when someone on social media talks about how they can't believe their baby is an actual preschooler, or is feeling melancholy and amazed that they have a second grader and kindergartner. And while I'd like to think I'm so wise, smiling to myself that their kids really are still so small and they don't even see it, I know someone is looking at me lamenting that my oldest is in MIDDLE SCHOOL and smiling because they just sent their child off to college, or just watched them get married.

The school year starts and there are times I have to fight the fear that I'm sending my kids off to the wolves. There is so much out there! There are moments I won't see. There are times I can't be there to fight every battle; to clarify; to remind. Thinking about this too much can rip your heart out.

So I remember.

I remember the wonderful teachers they've been blessed to have, and a school system where staff want to move the world for you if you show you care, that you want to be involved in your child's education.

I remember that if I keep talking with my kids, if I keep listening, if I am discerning and wise, I will learn more and more about those moments and interactions I don't always see.

I remember I can fight for them and surround them with my prayers.

I remember that my kids are ultimately NOT mine, and I can give them back to God in those moments when I know I can't do everything right, can't know everything, can't protect them from everything.

It's something -- it's everything.

Then I can flip the calendar and feel that jittery excitement that comes with fresh notebooks and new outfits and crisp mornings. It's a new season. Time to plunge into the adventure.































Wednesday, August 24, 2016

Ethan's Battles


I know when it's about to begin because I hear the rummaging in one of our toy bins. Then, often, the cardboard block towers going up. There are grunts, groans, and various other guttural sounds. And the music, of course, that sounds a little bit like a movie sound track, during the fight scene.

Even Chloe knows. The other day as she came down the stairs and stopped to listen to what was happening in the playroom, she said matter-of-factly, "Ethan's doing a battle again."

Yes, Ethan and his battles, his epic fights between little superhero figurines or whatever he finds (this includes kitchen utensils like cheese graters or slotted spoons). They are the same almost every single time, and I absolutely love them.

When Ethan was little, he had an extremely difficult time with pretend play. This is no surprise, as it's often a challenge with people on the autism spectrum. But even compared to kids with autism, Ethan had very, very limited pretend play skills. We would try. I did, his therapists did, Anna did. We knew part of this was all about introducing ideas and possibilities. I've written about this before: the way we'd take out the farm and the animals, or build something very simple with Legos and put some people inside, or try to push around cars.

He just.didn't.like.to.play. Not in that way. Ethan loved to run and jump and climb through tunnels; he loved music; he enjoyed books and puzzles; he was of course especially fond of anything with buttons or a screen. And over time I realized that while in many ways Ethan showed quite mild symptoms of autism, in these two respects: lack of play skills and an absolute inability to become interested in something that did not interest him, he was very much autistic.

We made our peace with that. We had to, because there is nothing worse than trying to make a child play and making a child miserable. It's just wrong. So while other boys his age built up huge arsenals of those Matchbox cars or trains or superhero guys with the little sets, Ethan did other things. He became interested in sports. He spent a lot of time listening to CDs and memorizing every song he'd sing at VBS (or Transiberian Orchestra!). He learned to read -- well. And of course he became very, very interested in video games.

About a year or two ago I heard some commotion in the other room. Specifically, I heard Ethan talking in other voices. The voices seemed to be threatening each other. When I peeked in I saw him on the floor with two little guys (from our meager selection of superheroes) in each hand. Then, they started killing each other.

Ethan's "battles" had begun. He was actually pretend playing, and none of us had said a word or given him a single suggestion.

Yes, Ethan's battles. They are always set to dramatic music that he sings in the background. They usually are repeating something he's seen in a video game or on TV -- but not always. They used to always involve the cardboard blocks somehow knocking over and killing someone -- but not anymore. It's taken a long time, but the plots are getting a little more elaborate. The battles sometimes take place outside, sometimes in the shower, and yes, they sometimes involve "unconventional" items like potato mashers.

Ethan has mixed emotions about his battle play. On the one hand, when he sees me watching him, he tells me he "needs his privacy" and to stop looking. But then sometimes he'll ask me to take a video of him and put it on Facebook.

I do not have mixed emotions about his battle play. I think it's awesome. I wasn't sure if I'd ever see him play like this. And while it's not exactly the way a typical kid would play, that's okay. I use to build the same Lego house over and over and then have it destroyed by a tornado (don't ask; guess I'm on the quirky side, too).

Kids on the spectrum are always learning. And I believe autistic adults are, too, because we all are. I'm done believing all of that stuff about our brains being more pliable only up to a certain age. You just never know. I'm still going to take piano lessons and I'm yeah, I'll say it, middle-aged. We are all always learning, and have the capacity to start doing something we never thought we'd do.

So battle on, Ethan. We're all excited to see what you discover next.













Sunday, August 14, 2016

Remembering in the Storms


Last night seemed very, very long.

We've been plagued by a stretch of oppressively hot, humid weather that's been punctuated by thunderstorms. Last night we got the worst of them so far. At first Chloe and Ethan (who has a robust fear of lightning and particularly power outages that might affect his time on Wii) slept through it. But when a crash shook our house I heard both of them stirring and saw Ethan cowering in bed, shielding his eyes. We're not used to bad storms here. Dan and I have an ongoing joke that thunderstorms seem to purposely miss our part of town, so the kids haven't had much practice coping with them.

This storm was decidedly NOT passing us by. I can't remember the last time I saw so much lightning. For a little while I just sat in the dark and watched night momentarily become day, over and over and over. Then I tried to urge them to go back to sleep.

"Mommy, mommy, mommy!" I heard from the hallway, where Chloe was standing forlornly, clutching a book. Dan caved first.

"Would you like to come in our bed?" he asked. She haphazardly climbed up next to us and sprawled out.

A few minutes later Ethan was standing over us. He in particular had not liked the way thunder had crashed, then the power had gone out for a half-second before surging back on. For a while he just hung out at the foot of the bed, his head half-slumping. I could see how tired he was.

"Do you want to come up?" I asked. I knew he was especially enjoying the coolness of the room, as the kids only had a fan, not an air conditioner and most of the house felt like a sauna.

He climbed to the foot of the bed. Before I knew it, he had managed to stretch out width-wise across the foot of the bed, just below our feet. He was out cold.

Chloe kept twisting and turning and performing near acrobatics. Was this what this girl always did in order to fall asleep? She kept mumbling about last week, and the thunder we'd encountered on top of a mountain in Maine. "The thunder is going to the mountain," she said, as it started to die down.

Somehow as time went by Dan and I were pushed to the far edges of the bed while Chloe took over a large section in the middle. Then the cat decided to hop on the bed and yowl in my ear, then look around for a spot.

My eyelids were drooping. I just wanted to sleep. With all of the feet and arms and elbows in my face an old song I remembered singing in grade school by John Denver started running through my head, over and over:

It'd hold eight kids, four hound dogs
And a piggy we stole from the shed
We didn't get much sleep but we had a lot of fun
On Grandma's feather bed


Yes, John Denver running through my head at midnight...that and I kept plunging in and out of a dream that involved, for some reason, moving to Seattle.

It was a fitful night's sleep, and I wanted to be annoyed. I wanted to be annoyed because of the heat and humidity and the kids bickering all week and about rarely getting a good night's sleep. I wanted to, but I couldn't. I was thinking of Jacob.

Jacob, my friend's son, has been fighting a very aggressive type of brain cancer. His parents have been so strong. His fight seems to be becoming more and more difficult.

His mom has been very diligent about providing many updates about what Jacob is going through on Facebook, these past four months. And I'll always remember -- I can't forget -- something she wrote early on, when all of this had just started.

She talked about how she remembered just a little while before Jacob was diagnosed, they were having a real issue with him climbing into his parents' bed at night. Maybe it was more than one kid; I'm not sure. She said they'd really been cracking down on that, that she had been concerned about it becoming a bad habit.

She was writing and looking back to the time when THAT had been her biggest concern. And she said how much she was longing to have that time back, how much she was looking forward to a time of just snuggling with her kids in bed. She reminded us to hold onto our kids, to enjoy them, to spend time with them, to remember those times that sometimes feel draining are also so precious.

I was thinking of Jacob.

And so I scrunched myself up to avoid falling off the bed and looked at their peaceful little selves as they slept, remembering they are fearfully and wonderfully made.

I remembered that a night of thunderstorms really would be over in just a blink.

And eventually, I fell asleep.

Please, friends...pray for Jacob and his family.

































Saturday, July 30, 2016

The Playdate Conundrum

I need to start this post by just saying how much I love the word conundrum. Say it slowly...isn't it beautiful??

Okay, now that I've gotten that off my chest...here we are, smack dab in the middle of summer, and Ethan's been driving me up a wall begging for a playdate with a friend from school.

This in itself is awesome. He has a friend (several, actually)! He misses him! For years Ethan seemed to only tolerate kids other than Anna or his cousins. Okay, so he wants the friend to come over so they can play Wii together, but still.

We'll call him "Bob," since that's the random boy name Anna assigns to male creatures. Ethan's known Bob since kindergarten. He's attended his birthday parties. He was on Ethan's baseball team a few times. I've chatted with his mom, in that polite, classroom-moms-chatting sort of way.

For the last weeks of school, Ethan kept asking for Bob to come over, and I kept forgetting about it. When I saw Bob's mom at a school event I knew I HAD to get her contact information so I could set something up over the summer. She sheepishly admitted she wasn't really a computer person and the best way to reach her was to call. She gave me a number. I made sure to enter it into my phone instead of scribbling it on a random wrapper and losing it in my purse, the way I usually do.

Then we went away for two different weeks and Ethan had VBS and swimming lessons and finally this week he remembered Bob and insisted he HAD to have a playdate this week, that it wasn't fair, that Anna had seen her friends several times this summer.

I knew he was right. I said I'd call the next day.

"Why not now?" he demanded.

"It's past nine o'clock. I don't like to call people much past eight."

The next morning, he bounded down the stairs at 6 a.m. and wanted to know if I'd called yet.

"You can't call people this early. It's not polite." I realized we had to have a little chat about appropriate phone usage. More than that, we really need to sit down with Ethan and practice having him dial and talk on the phone.

That afternoon I dialed Bob's mom and listened as it went straight to voice mail. I left a message. Three minutes later, Ethan was at my side. "Did she call back yet?"

"Give it time, Eeth."

About hourly after that, Ethan asked if I'd heard anything. In school, as part of the social skills curriculum, they learn about a character named Rock Brain who gets "stuck" on certain ideas and can't let them go. I could see we'd entered Rock Brain territory. I also had no idea what to do about it.

"Why can't you call her back?" Ethan asked that evening.

"Ethan, we have to give her more time. I can't leave a message and just call back a few hours later. They might have been away this weekend. Maybe she doesn't check her voice-mail that often."

Once again, I realized we had delved into a whole new territory with unspoken rules. This was a doozy: how persistent to be when trying to make plans with someone? Stories of over-eager, well-meaning people on the spectrum who couldn't take no for an answer and were ridiculed danced in my mind. Anna voiced my concerns, in her own way:

"Ethan, you can't have mom keep calling that woman. It'll be weird. She'll think she's a stalker."

I tried to explain a little about why we shouldn't pester people non-stop when we're trying to reach them. I'm not sure how much sunk in, but the next morning, at 6 a.m., Ethan demanded: "You have to call her again!"

"Let's give it until the end of the day," I begged off, checking my phone again for any missed messages.

Throughout the day Ethan bemoaned the unfairness of Anna getting to see friends while he couldn't. I offered up other ideas. There was another friend he hadn't seen for a while -- what if they got together? Rock Brain wasn't having it. This certain friend knew how to play both of his favorite games on Wii, and that's what he wanted to do. That was it.

The following morning I left another message that went straight to voice-mail. I wondered: was this even the right number? There was no identifying info in the message. Had I even written the number down correctly? Where was this woman??

Another day dragged by. More interrogation by Ethan. No return calls.

"WHY can't you find her so I can play with him?!" Ethan wailed at one point. "With Anna you set up playdates so quickly."

"Well then tell your friend's mom to get into the 21st century and go online to interact with people!" I shouted back, exasperated.

"There's only one thing left to do. We're going to have to go to his house," Ethan said earnestly. I could just imagine that...Googling these people, attempting to figure out their address in town, scoping out the house and meandering to the front door. Ummm, no.

"There are other friends you can play with..." I started again.

"No! I really want to see HIM!"

"You can't be this inflexible and then be upset when it's not working out!!" I tried to explain, tired. Summers have a way of doing that to mothers.

I said it before and I'll say it again -- I'm so grateful he even wants to play with another kiddo. And we've been blessed to have two boys his age who live in the houses right next door. They just happen to be away right now, I think. And Ethan just happens to want to have one certain type of play with one certain person right now.

We are about to head up to Maine (in the words of Ethan: "Awww. Now I don't get to play Wii!!"). The quest for "Bob" will be temporarily suspended. But I'm pretty sure I know what's going to happen when we return, especially if Anna starts getting together with friends...

"...But what about MY playdate?"

"But his mom's not responding to my messages. What about another friend?"

"No. I only want THIS friend."

"...then you can't have a playdate."

"Then it's not fair!"

That's the conundrum. Ahhh, how I love that word.
































Monday, July 25, 2016

Rocking the Bathing Suit


It's summer, it's July, and that means as it has for the past who-know-how-many years, it's time for the kids to take swimming lessons.

Every year since both Anna and Ethan have taken lessons, it's been the same: they never seem to have classes at the same time, so for two weeks we spend two hours at the town pool nearly every day. For the last two years, we had Chloe with us, too, of course, and those first years it was fairly easy to distract her with the playground nearby so she really didn't notice big brother and sister were swimming.

I knew this year that would NOT be the case.

I knew I'd need to sign her up for a class, too (Parent-Tot, which goes through age 3).

That meant...sigh...I knew I'D need to go to swimming lessons, too.

Okay, so let's just cut to the chase here. I've never been one of those people to walk around in a bikini. I've never been stunningly slim. I've never really rocked a bathing suit, and for the most part, I haven't really cared. But...yeah. The last few years I've put on some weight. Having a baby in your late thirties will do that. Who am I kidding? I'm not going to blame Chloe. Loving food too much and exercise too little will do that.

I KNOW I need to lose weight. I have a number of wonderful, were-overweight-but-are-now-fit friends who I know would be happy to help me. I realize this, and I realize I have to do something about my love affair with food (darned Italian genes!) but that's a story for another day. The point is, I was going to have to suit up and bring Chloe to swimming lessons.

First I had to ditch my plain black, threadbare, I'll-wear-this-boring-thing-and-try-to-be-inconspicuous bathing suit and actually get some new suits. After wildly contorting myself to squeeze into a few in a tiny dressing room with Chloe, I was happy to find two I liked, and on sale at that! (Sometimes I look at the price of bathing suits and want to pass out. One hundred bucks!? For something I'll wear for a few months each summer?! Craziness!).

I tried to think about all of those articles that have been floating around online. Okay, I'll be honest. I haven't even read the articles. I've seen so many now half the time I skim the intro and get the general point. You know what I'm talking about? The one about overcoming your aversion to putting on a bathing suit and putting one on so you can spend precious moments with your kids? Or the one about not being afraid to be photographed? Or about reaching your forties and saying, "Who cares?!" about so many things you used to care about?

Yeah, I tried to think about all of that. But as the week for swimming lessons drew closer I also thought about the pool. I thought about the fact that the way things were set up, if you went in to change you had to walk RIGHT PAST the gate entrance where all of the kids and parents of all ages were standing waiting for their respective lessons. And the way the Parent-Tot class was right in the shallow edge of the pool where other parents set up their chairs and look at their phones or read or possibly judge how crappy you look in a bathing suit.

Did I mention I refuse to wear one of those skirty old-lady bathing suits? To me, the only way to rock one of those is to spend more money than I wanted to spend. There are some cute styles, but they're not usually the ones you'll find at Kohl's.

I could see myself lumbering across the pavement, while some mom with her hair pulled up in a sophisticated messy bun in her work-out clothes sat in her chair on the other side of the chain-link fence and wrinkled her nose at the sight in front of her.

Sometimes I wonder if our middle school selves ever really leave us?

So, the day of swimming lessons finally arrived. Only it was cancelled at the last-minute due to thunderstorms. SO, the real first day of swimming lessons finally arrived. We got to the pool and I stealthily scoped out the situation. There was no one there I knew, except a grandma who brought her grandson to the town play groups sometimes. Good. Chloe and I slinked into the bathroom. Actually, I slinked and Chloe screeched because she wanted to jump into the pool. Immediately.

As we got out of there and I desperately tried to convince Chloe that we had to wait another 10 minutes for her lesson as she cried and drew all sorts of unnecessary attention our way, I realized something. I was darned hot. The week had been hot. And the week before. Our mostly non-air conditioned house was steamy. I wanted to get in the pool, badly.

Then I saw the other moms (and a few dads) coming through the gate. And wouldn't you know? Of course they were human, meaning all shapes and sizes. Yeah, some looked as if they were the types who just "forget" to eat sometimes, but most were just regular people, with all manner of body types and imperfections. Duh. And they were tending to their babies and toddlers. They were pretty much too distracted to check out my bathing suit.

I don't know how many times I tell my kids this, when they're agonizing over looking silly or people judging them. Most of the time, people are thinking about their own "stuff." They're not paying attention to us nearly as much as we think they are.

And another thing, even if they are...I remember hearing someone talk once about being nervous about inviting people over her house because it was not fancy and was rather messy. Then she told herself, maybe I'm not doing this for me. Maybe I'm doing this for someone else who needs to see someone else's house isn't perfect, so that they can let their guard down, so they can know they're not alone and it's okay.

Maybe someone needed to look at my spider veins and say, she's not caring, I can do this, too!

Maybe they weren't looking at all because they were busy with their own life, child, and self.

Or maybe they were judging and that's just life.

I know I need to get more in shape...not to impress anyone but to be healthy, to take care of myself a bit better.

I know I have never really rocked a bathing suit and probably never will.

I know that little by little, I am caring less.

And I know that that cool water on a sweltering day felt darned good. So did playing in the water with my child. Maybe I'm not rocking the bathing suit, but I can do my best to rock my forties and, like those articles keep saying, finally toss off the albatross of caring what everyone thinks. It's refreshing really, to finally stop realizing the world doesn't revolve around me.