Monday, October 22, 2018

Try to See it My Way

"Can't you have a little bit of empathy!" Ethan cried out, exasperated. He'd asked for gum and I'd said no, not at the moment.

At school they'd been talking about seeing things from other people's point of view. This wasn't a social skills thing. This was an everybody lesson, because really, all kids need help in this area (who are we kidding? -- adults, too). "You're supposed to understand how much I want that piece of gum," he said accusingly, and sadly.

"I do," I told him. "But you're supposed to understand that it's time for you to leave for school, not to be digging around for gum!"

This empathy thing, this trying to place one's self in the mind of another, has been big in our house lately. No more so than the way it relates to Ethan's new favorite video game. Namely, he's obsessed. And we're trying to kindly communicate that not everyone adores the game as much as he does.

It's hard to put his favorite game, Baldi's Basics in Education and Learning, into words. I say that because it's a spoof game. Baldi's Basics does not have stunning graphics or a complex story line. It's actually design to be a scary/funny take off those old "edu-tainment" games that became big in the 90s and often came on CD-ROM. You know, the whole "let's make learning fun" concept with a kindly voice talking you through the game and helping you to solve puzzles or answer questions. I just don't know what to say about a game whose main character (Baldi) looks like this:



Baldi's Basics takes place inside a school. The object of the game is to solve math problems and collect seven notebooks placed throughout the school. Only -- some of the math problems are purposely unsolvable, and when you get a problem wrong, Professor Baldi begins  begins chasing you around the school. There's a host of other characters including a principal and janitor, and the entire game is badly drawn, poorly executed and downright ridiculous -- especially when Baldi catches you with a "jump scare" and buzz-saw sound. This is, of course, what makes it absolutely entertaining to 10-year-old boys.

Or at least to Ethan. He spends most of his screen time coding his own version of Baldi games. He has been known to bring a ruler to school and slap it against his hand, Baldi-style, and chase people as if he's Baldi. We caught him up at 4 a.m. one morning; he'd been sneaking Baldi videos on YouTube for hours.

"Ethan," I confided one day when he asked me to view one of his Baldi coding projects again, "I hate to say it, but I'm getting a little tired of Baldi."

"What?" he exclaimed. "But Baldi is my heart!" My confession really bummed him out, so much so that an hour later he was still talking about how sad he was that I didn't like Baldi as much as he does.

"I don't think ANYONE likes Baldi as much as you do," I told him.

"But why? He's so great. It's so funny..." he began a detailed description of all the items you can gather in the game, Baldi's different faces, game glitches, and so on.

"Eeth, remember all that stuff you've been talking about at school about seeing things from other people's point of view?" I asked. "You have to apply that to Baldi, too. People just may not like it as much as you do, no matter how hard you try."

"But why??" he demanded. "I'm so sad."

I wracked my brain and then it came to me. "Come here," I urged him from the computer, where I was going to YouTube. I typed in the two words that had brought me so much joy, circa 1988. Growing Pains.

"You see this?" I asked. "THIS was my absolute favorite show when I was just a little older than you. I LOVED this show. I had posters. Scrapbooks. I memorized the intros. I gave every episode a GRADE. I learned the theme song on the keyboard."

Ethan's eyes were already glazing over at the theme song and then a scene in the Seaver family living room.

"But Ethan?" I continued. "I couldn't get ANYONE to like this show as much as me. No one in my family liked it. I didn't even try. They thought it was so cheesy."

"What is THIS?" he started moaning as the canned laugh track kicked in.

"You see? See, this is just what I mean," I said excitedly. "You are so bored watching this. That's just it. That's how other people feel about Baldi sometimes. I can't MAKE you be obsessed about Growing Pains. You couldn't care less. And that's okay. It's just what they were talking about at school. Can you see from my point of view?"

Ethan looked at the computer screen, unconvinced. "But Baldi is the best. I want other people to like it." He drifted away from Growing Pains. I could see we were back to square one. I wondered if this obsession would fade before most of the other kids at school tired of it. I wondered if it would ever fade for Ethan.

Then I watched Growing Pains for a minute, because when I did I remembered sitting on the floor two inches from the TV and not letting anyone speak so I could catch every bit of dialogue, and calling my friend during the commercials, and my Kirk Cameron: Dream Guy unauthorized biography, and the TV Guide article about the show I carried crumpled in my pocket in seventh grade. 'Cause yeah. Like Baldi, it was corny and predictable and no one in my family liked it like me. And yeah, Growing Pains still kind of is my heart.




Sunday, September 30, 2018

Not "I should" but "I get to"...

I was at someone's house recently admiring the d├ęcor and thinking, "I should really do something like this." Then I realized that wasn't exactly what I meant. The should needed to be removed. What I was really thinking is, "This is great. How could I take some of this and make it work for me?"

There's a big difference. Let me back-track.

For all of my life, really, I've noticed that women (I guess this could relate to men as well, but I see it far more often with women) tend to go all or nothing when it comes to stacking themselves up against other women.

Very often when we look at how another women dresses, cares for her kids, decorates her house, moves up the corporate ladder, whatever -- we either want to completely disparage her choices because they are so far from what we would do...or we completely disparage ourselves for not measuring up.

And so, there are times during interactions when a silent dialogue is going on in our heads. And some could range anywhere from I would never let my kids stay up that late to I could never pull off wearing that outfit.

I feel as if for as long as I can remember, I've heard two messages. One is that we should live and let live and what other moms or women may choose to do is not our business -- we should be confident and secure about the decisions and hobbies and overall ways we decide to live our lives.

But I'm starting to think there is another path, and it's one on which I'd prefer to tread. It looks at another woman and maybe thinks, You know, that's not that way I would handle that. Without superiority, just an acknowledgment. Without approval, because it's okay to disagree with someone and still love them and value them. Somehow I feel we've fallen so far from this in our culture.

I can also, and this is what I've really enjoyed discovering, look at another person and see everything she's doing right, and make room for admiration. This can be so. darned. hard. It's so easy to swing from, Wow, this house is so beautifully decorated to I suck at of this homey stuff and always will. Comparisons will leave us dry and lifeless and they keep us self-focused. Not only that, but comparisons are about measuring up; admiration or appreciation, on the other hand, acknowledge a gift, a talent, a way a person is living that is just done well. And when I'm able to do that, I'm able to not so much think about how I could be that person, but rather how I could a take piece of that and make it my own.

We are not meant to be clones. We each have a unique calling and purpose. But rather than a clean slate I wonder if we aren't each more like a patchwork quilt. Our lives are beautiful collections of experiences, memories, failures, joys, tragedies, irritations, and interactions. We are still one of a kind even as we emulate that person who's so good at hosting or cut my hair like a friends' or make a meal for someone like a neighbor did. Even our Pinterest fails make us richer.

It's not about just letting it all hang out and letting people learn to have to deal with you. It's about being secure enough to know maybe you don't have it all figured out and there are other people who may have pieces you're missing. But they may not. It's not that we have to try improve ourselves. It's that we have an opportunity to grow, if we want to, if we so choose. If we see it less like a bad verdict on our worth, and more like having an adventure.

Wednesday, July 25, 2018

Longings

There are times these days, with the sticky days of summer rolling on and on and all of the kids in the house, when I feel I'm talking, but no one is listening.

With Chloe, her "selective hearing" is a matter of defiance. She often doesn't WANT to hear what I have to say, so she avoids me and keeps doing what ever she's doing.

Anna does hear what I'm saying. But these days we tend to not have much in common, and I don't think she has too much interest in what I have to say. So I would say she listens politely.

And Ethan? Ethan is literally not listening. As in, most of the time this summer he spends in his own world. It's a world of coding, video games, facts he's learned from one of his giant fact books, or quotes from Captain Underpants. I can push and prod for him to leave his world, and he will, under protest. He has to be in the right mood. He has to be the one who feels like chatting. He has to have had enough screen time to leave him not cranky but not too much as to leave him insatiably craving more.

Sometimes, I feel it's only fair to give him a break. He has to be "on" all day, every day during the school year. Thanks to good reports from his teachers I know he does jolt himself out of his inner world during school hours. His desire to be a rule follower is too strong. But at home, he's free to be Ethan. And that means the autistic side comes out a little more.

I don't mind this. I'm thankful he has the ability to articulate that he doesn't feel like talking right now because he's thinking about a coding project. I don't take it personally. But these days, with every kid off in their own direction, with each one having a strong will, strong feelings, and varying obsessions and idiosyncracies that I feel I'm always tending to, sometimes I just wonder if anything I say is sinking in. I wish I didn't have to work so hard.

As I was thinking about that, I was wondering a little bit if that's how our Creator sees all of us. He longs to have a relationship with us. He longs to speak. He is speaking.

Are we listening?

Do we set our affections elsewhere? Do we run away in our minds to safer, more commonly tread places? Do we resist?

Yet still He longs for His people to have a relationship with Him...for us to not just see Him as the man with a beard wagging a finger at us from the clouds. I don't think He cares much for communication out of guilt and appeasement and obligation. I know it's kind of deflating when Ethan sighs, "FINE!" and rolls his eyes when we ask him to chat with us.

We find so many things to fill up our days and our moments and our minds. And still He pursues...still He speaks...still He waits for that moment when we might get out of our heads and our selves and listen.

Still He loves...

...as I will always love my children, through frustrations or when I wish they'd make different choices. Still I long for that connection. And like those days when, for instance, Ethan shares for the sake of sharing, not because he is coerced....in the moments those true connections are made, well, that is something fantastically beautiful.



Wednesday, June 27, 2018

Letting Go of the Wheel

The other day I moved a cabinet to dust for the first time in way too long and saw something covered in dust. After brushing it off, I realized it was this:


Most people who have a child in speech therapy or with special needs will recognize immediately what this is -- a PECS (Picture Exchange Communication System) card. Children who are not yet verbal can use them to communicate. They're also helpful for creating visual schedules. This is why Ethan's speech therapist made them for him. His speech was catching up, but PECS was great for reinforcing ("first you take a bath, then you can have a snack") and showing him what was going to happen in any given day. We had a binder with a piece of Velcro attached and you could stick various cards (i.e., Library, Lunch, Computer) across in a row to show the order of things. I find it hysterical that the last of the cards to survive is "Computer" for Ethan, Lover of Screens.

This could be a post about how far Ethan has come since the days of those pictures, and that wouldn't be a bad thing. That is, really, what first came to mind when I saw the card. Those days of therapists in the home or going by a visual schedule seem like a long time ago. I am really grateful Ethan can speak and make his requests known, as well as his feelings.

But after a few seconds a whole other host of emotions came to mind. I thought of the parents out who might find something like this years and years later and have to face the reality that things hadn't changed all that much. Maybe their child is 12 and still has to use them to communicate. Maybe they are still showing these cute little pictures to their 20-year-old to indicate what's coming up next.

Then I thought about how many of us parents (and I would include Dan and I in this category) are so thankful for the amazing strides our kids have made...but with every accomplishment, new challenges present themselves. Often with autism, one obsession is overcome only to be replaced by another. One obstacle is conquered but a new one crops up. It's kind of like that whack-a-mole game. In Ethan's case -- there's no denying he's doing incredibly well. We're so proud of him. But he is getting older, and that means there's more intense emotions, more intense obsessions, and greater demands socially. He holds things together really well at school. He just saves a lot for us, I guess because it's safest with us. The way it should be. In that respect, the picture of the computer seems kind of quaint. We've had more violent outbursts about our computer these days than I would care to count.

But even beyond that -- as I looked at the picture I realized how in some respects this is something all parents deal with. The challenges that seem really insurmountable when your child is three (potty training; tantrums) don't tower so large when they get older. In part that's because they're replaced by new ones. The demands when they're little can take so much out of you physically. As they get older, I think it's our minds and emotions that are often challenged: "Did I say the right thing? Should I have let her do that? Will he remember what we've taught him about that? Will he stay on the right path?"

I'll be honest here: there are days I wouldn't mind dealing with some issues that are a little more cut and dry. And there are times it seems parenting can become heartbreakingly more difficult.

I hate to write this to sound like a downer or to scare parents of younger kids. I think one thing I've learned is nothing is wasted -- the "littler" things you go through with your kids when they are young may seem huge at the time and not so much in retrospect, but no matter what they are, it's training for what's ahead. It's training in how to make wise decisions; work together as parents; help your child as an individual.

And as the years go by you learn to balance that pressure of I-am-the-parent-and-am-utterly- responsible-for-the-outcome-of-this-little-being to letting them go to become their own person.

Sometimes this will involve a lot of pain, prayers and tears.

Sometimes it will take everything in you not to blame yourself for your mistakes.

Sometimes you'll shine with joy at the steps they're taking as they begin to walk on their own.

Sometimes your heart will be ripped out of your chest.

We will always have a part to play. Parents of those with special needs often have an even bigger role. But in the end, in some way, shape or form, we have to let them go while simultaneously hoping, praying, and loving. Let go of the futures we had planned for them, the dreams and expectations, and know that life can take all sorts of interesting twists and turns. We can believe eventually they will ride the rough waters to land on the right path -- but when they do, it won't be from everything we "made" happen.

In the end, it can never be just up to us. That's too big of a burden to bear.

When I see that little picture from a long time ago, I'm thankful for God's grace...for the progress we've seen in all of our kids, and the patience and fortitude to wait for the change we still hope to see.

There's a beautiful song by Jason Upton I used to love that he wrote to his firstborn son, Samuel when he was born. Part of the lyrics  go:

There will be days you feel like flying

There will be days you feel like crying

Never give up, never stop trying


And it struck me that while those he is singing to his child, those are words God sings over us, too, on this wild adventure that is parenting. And so we walk on, with faith, with joy, with expectation, but not so much with the control we like to think we have.




















Sunday, May 20, 2018

Gems with Imperfections

We were in the car and Chloe was playing with a toy the teacher had just given to her -- some kind of cute, stretchy pink bunny; kind of Gumby-like. After a few minutes, she stopped her squeals of joy and the backseat got quiet.

"Ohhhh...it's broken," she said softly.

When we stopped the car I took a look and had to squint to see the teensy-weensy little part of the pink rubber material that had come off one pink leg.

"You mean THIS?" I asked. Chloe handed the bunny to me. She didn't even want to look at it. "It's broken now. I don't want to play with it anymore," she said sadly.

This has been a somewhat infuriating theme for several months now. While Chloe is not meticulous about things like her room, her clothes, or her appearance, if a toy shows the slightest sign of defect, she's done with it.

So when she misplaces one of her toys from the "Octonauts" set...or breaks a string on her little guitar...or notices paint wearing away in one spot on one of her bath toys, that's it. She loses interest. Well, except if we turn the house up and down to find the Octonaut toy. But that's an exhausting endeavor that seems fruitless when she loses it again two days later. If not two hours.

I have tried to figure out this whole thing, wondering if it has to do with some shades of perfectionism. Again, that word doesn't seem to fit quite right because this is a girl who steps all over the books on her floor wearing red rain boots and a blue winter coat with a rainbow dress -- with dirt on her face, "ready" for school.

"Chloe, the toy has just a tiny little mark," I'll say. "Nothing is absolutely perfect. You know, we still love you and play with you even though you're not perfect."

Of course this idea is lost on her. She just shakes her head when we say that and hands the toy back.

But it got ME thinking. An inanimate toy is one thing. People are another. Especially people that aren't your own flesh and blood, that you aren't kind of obligated to do life with. People who do things like talk too loudly; are always late; have interests completely opposite to mine; interrupt; read different kinds of books. And so on.

I live in a family of introverts. I'm probably the most extraverted of the introverts, but still prefer quiet...books...a cup of coffee and a blanket on a rainy day...deep conversation with one other person. We introverts tend to be sensitive, and we tend to be idealistic and maybe, yes, lean toward perfectionism. At least some of us.

We find it easy, I couldn't help but think, to discard people not unlike the way Chloe prefers to eschew a toy once she discovers a flaw.

Oh, how we love order. The friend that is always where she says she'll be when she says she'll be. The person who speaks thoughtfully without accidentally blurting a backhanded compliment. The one who doesn't act rashly or try to draw attention to herself.

We love people who are like us, when sometimes we need people to refine us.

If I give Chloe back a toy with an obvious imperfection, I can see how much it bugs her. She'll keep stealing glances at the black mark on the doll's arm or the missing piece. It's a subtle kind of nails-on-chalkboard feeling. But I think if she would give it awhile and allow herself to see the toy as a whole, maybe, just maybe after a little while she'd stop honing in on the imperfection and start having a little more fun again.

I saw that this morning when she picked up the guitar with one string broken and started strumming it once again. She began singing the simple song that I had taught her. She could still do that, even with the broken string.

The Velveteen Rabbit has always been one of my favorite stories. It's about what a boy's love does for a toy bunny. But what does loving that ragged rabbit do for the boy? It softens him in the same way the rabbit softens with age and years of play. He loves better.

I would like Chloe to be less picky about toys, but more than that, I'd love her to love better. I'd like ME to love better. Before we can truly "love our enemies," as the Bible tells us, we need to start by practicing with the people who maybe just irritate us sometimes.

Maybe we can remember that we all, even us, have our own unique set of annoying faults. Yes, we actually do!

We will never find the perfect friend, or spouse, or social group. We're going to have to do a bit of bearing with each other. Or else our other choice is to do Alone. Alone is not so bad sometimes -- especially for us introverts. But sometimes we need to take the plunge and do life with people. Life with people can be messy and infuriating and even heartbreaking. Also beautiful.








Tuesday, April 17, 2018

Speech Matters

When it comes to his general use of language and residing on the autism spectrum, Ethan's done well. He's done very, very well. The child who had maybe 20 words at his 2nd birthday soared through speech therapy, including the use of pragmatic language.

Ethan's doing great. He does have some idiosyncrasies in speech that we talk openly about all the time. For example, his tendency to use the more formal version of words (so, "hurt" becomes "injured," or "throwing up" becomes "vomited"). It's very hard to explain why he should use the more casual version of the word in everyday conversation, because in reality I'm not sure why he should, except to avoid ridicule from fellow fourth graders.

He also hates relating to people with meaningless pleasantries. So if Chloe says, "Ethan, I found my blue shoe," and Ethan has no interest in that or really doesn't care, he just doesn't say anything. For a while I told him he could just say something like "that's cool" but he protested that it really wasn't, it was something silly that wasn't "cool" at all. I realized he was technically right and asked if he couldn't respond with a simple, "Oh?" that would show he had at least heard what the person said. "It's not always about you," I tried to explain. How does anyone really successfully use that argument with a kid? Nevertheless, I tried. "Sometimes you respond just to show you care about the other person even if you don't care about the information they shared." We're still working on this one.

Lately, Ethan has discovered something about the English language, and yeah, it kind of falls in with the whole "formal-speak" issue. He's realized that not only does he dislike shortened versions of more formal words, he really, really dislikes contractions.You know, like can't, won't, shouldn't, and the whole mess of them.

I don't even remember learning contractions, except when everyone would argue about how ain't wasn't really a word. I don't know when you learn them -- first grade?? Who knows. As usual, this is something I've rarely thought about, but autism has a way on shining a spotlight on many things we wouldn't otherwise have thought about.

First he shared he really prefers saying "thank you" rather than "thanks." If I told him "thanks" for something he would correct me. I responded that I understood, but it was really the purpose behind what I was saying that mattered -- the important thing was that I was thanking him. Of course he always remembers to chime in "you forgot to say you're welcome" if I do. Or maybe I should say, in his case, "you are welcome."

We will be in the car and Ethan will say that he's going to make sure he doesn't use any contractions. I'll ask him why he dislikes them and he doesn't really have a good reason.

Kind of like asking me to explain why I dislike NOT using contractions.

At church he asked to hold the door for people as they were leaving and we were still getting coats on and chatting with people. He must have stood there for 15 minutes as people streamed out. Once we got going, he confided: "Mom, 37 people thanked me for holding the door. And not one of them said 'thanks.'" He was very happy about this. Not that they thanked him...but because they said "thank you."

The next week he was holding the door again and I purposely said, "Thanks!" as loud as I could, then tousled his hair. He knew I was just kidding around.

One morning he announced, "I like the Bible."

I kind of had a hunch what was coming.

"Because God, when he talks, never uses contractions," he continued.

"You like that, huh?" I asked. "Why?"

"It just SOUNDS better," he said.

"More powerful?"

"Yeah."

That got me thinking about how God or Jesus really spoke minus the King James translation. I wondered: how DID God speak, thundering from the mountaintop? How did He speak through Jesus to a group of people? Was it ALWAYS like Gandolf in The Lord of the Rings ("YOU SHALL NOT PASS!"). Or was it a little more like Jesus Christ Superstar? Somehow I figured it was NOT a bunch of thee's and thou's. But then again...

Thanks to Ethan the speech matter momentarily becomes an existential one. I start thinking that a being that is otherworldly truly speaks the language of galaxies, of the universe, far too complex for a mere human mind to understand. However, God reaches to our level and communicates in a language we can follow. Even if it's not His natural one.

The least we can do is meet Ethan at his level. We can work to understand the translation and hear the heart of what he's saying rather than just the words. And it's what we ask him to do all the time. We meet people where they're at because we love them. That's why we ask him not to correct a friend that's using contractions, or to show interest when someone says something benign. It's a way we die to the ever-present disease of self. It's a way we show love.




















Wednesday, April 4, 2018

When a Reward is Not a Reward

A few weeks ago Ethan came home from school with a paper. All the kids in his class who'd scored high marks for good behavior were invited to a special breakfast before the start of the school day to reward them for their exceptional behavior.

"That's so nice," I ooohed. Ethan grumbled.

The morning of the breakfast did not start well at all. He'd had trouble falling asleep the night before and wanted to sleep late rather than get up early, of all things, for the breakfast.

Then he couldn't find his homework. And he realized he had health that day and really, really didn't want to go to school at all. (He hates health. Who can blame him?). He wanted to play with his circuits. Lately he's loved doing his circuits. School was an interruption.

"We need to get going," I urged.

"But what about my bagel?" Ethan's favorite breakfast is a bagel with butter. He'd eat it just about every day if I let him.

"Eeth, you can't have a bagel today. They said it's a pancake breakfast."

"But I want my bagel!" I could feel his anxiety rising.

"Look," I said, deciding to bargain. "If you get ready, I'll make you a bagel too, since you hardly ever eat at these school breakfasts."

He liked this idea, but didn't want to get ready. Today the world was against him. This Tuesday was like a Monday. I tried to tell him so many people feel the same way, getting up not wanting to go to work or school. Or health class. It was part of life. You just had to push through.

The pushing was feeling like slogging through mud. By the time he had stopped shooting baskets in his room and doing other fiddling around, there was no time for a bagel.

"WHY?? Why do we have to do this?? Why can't I just have my bagel and relax!!??" he wailed.

"Ethan, this is supposed to be a REWARD, you know, not torture."

"Well it's NOT a reward for me!" he shot back.

Sigh.

I knew he was right. It wasn't a reward for him. This special pancake breakfast was an interruption to his schedule; a disruption of the norm.

Getting to school early, having a different breakfast, being forced to make conversation with peers and teachers in an unfamiliar setting...these were scary propositions.

I knew it wasn't his two teachers' fault. They were doing something commendable in making sure to recognize this group. It's just...for Ethan, it was more like facing a punishment. Or at least a difficult homework assignment.

It reminded me of the time my reward for high honors in my small private school was going out to lunch. Everyone else at the lunch turned out to be older than me. Torture. Then there was the perfect attendance dinner in 9th grade in which I was assigned to sit at a table with a girl who hated me. I still shudder.

We got to the school and followed the smells of pancakes down to his math/science teacher's classroom. The kids were sitting around a table. Ethan lurked at the door, pacing and staring intently at a bulletin board. "Don't make me go in," he pleaded.

I felt simultaneously bad while knowing I had to give him that gentle shove in. It might be harder for him than any other kid, and we were compassionate about that, but -- he's a not quite typical kid in a typical world. He will face these situations again. We have to keep encouraging to take another step, to make the harder choice.

It's not just him. It's all of us. It's learning how to do something less instantly gratifying now to help us gain something much greater for the future. I have so much to learn, when it comes to this lesson.

That afternoon Ethan came home gushing. "The pancakes were CHOCOLATE CHIP!' he announced. "They were so good! I loved that breakfast!"

For a moment, I felt a little smug. "Now aren't you glad you went?" I asked.

"Well...kind of. But I still didn't really like it," he said. "Can I PLEASE have my bagel tomorrow?" he pleaded.

The reward really hadn't been a reward. Yet it was -- one a little less tangible but rather part of a very long process of laying building blocks for life.