Thursday, December 20, 2018

The (Christmas Tree) Saga Continues...

The other morning Ethan issued a big sigh -- one of many he's emitted lately. 

"What is it?" I asked. 

"Why did we get this tree?" he demanded. "It's the worst Christmas tree ever." 

And truly, it is. We cut down our tree on December 1, immediately got it into a stand, and began faithfully watering it. No matter. The entire bottom of the tree is completely bare. The cat walks underneath and needles rain everywhere. The needles are so thick on the carpet I'm afraid to use the vacuum for fear of breaking it. 

"All of the needles are going to be gone before Christmas!" Ethan wailed. 

"Ethan, stop. No they're not." I heard more needles rain down. Hopefully

He followed me into the kitchen and I began to prepare Chloe, who happened to be jumping and dancing around the room singing "Jingle Bells," a bowl of cereal.

"Why can't we just buy a new tree?" Ethan begged. 

"Ethan we are NOT spending money on a completely different tree at this point..." I was interrupted by Chloe slamming accidentally into my arm, mid-song. The bowl went flying into the air before landing on the floor, splashing milk and Life cereal everywhere. Chloe ran into the other room, shocked at what she did. I found her sitting huddled in a rocking chair next to the tree. Needles were still raining. 

"It's okay hon, it was an accident," I tried to soothe her. 

Ethan had followed us in. "No one is allowed to go near this tree until Christmas," he announced, glaring pointedly at Chloe. 

"I can't stop the cat," I told him, heading back to the kitchen to wipe up the cereal mess. 

"That's it! You need to give these people a bad review online," he decided. I'd thought about it. But that seemed so...Grinchly. 

After breakfast, I looked up the tree place on the computer as Ethan peered over my shoulder. "Five star reviews!" Both of us were incredulous. "Why are all these people giving them freakin' five stars?" Ethan screeched. 

"Stop with the freakin'"...I said automatically. Five stars. Sheesh. Maybe it was their family members rating it or their closest friends. There were only six reviews after all. 

"Mom, you have to do it." 

"Ethan, I can't." I kept picturing the happy couple at the tree place, walking up to our car, ready to hand us a saw. They were a very small tree farm. I didn't want to put anyone out of business. 

The pestering continued until I told Ethan I wouldn't review the place online but would give them a little call to express my displeasure with the tree. As the sun came up and threw light into the room, it looked even worse. Never mind the spider webs on the star. 

Later in the afternoon, I had a chance to dial the number. You Scrooge. Who calls to complain about a Christmas tree? What did I want them to do, anyway? Refund me? Just as I was about to hang up, I heard more needles pouring down. Soldier on, I told myself, gritting my teeth. 

Only -- no one picked up the phone. The voice mail cheerily announced that the tree farm was now closed for the season, and "Merry Christmas!" My guilt momentarily disappeared. THAT figured. Maybe I SHOULD go online...only the reviews were so nice. IF they were real reviews. They talked about how kind and helpful the owners were. I couldn't do it. We were just going to have to suck it up.

I wondered about tinsel. Maybe I could buy some tinsel and wrap it around the bottom. That might make it less noticeable. Only -- putting tinsel on would mean touching the tree. And even more needles would pour down.

"Mom, I kind of was hoping I'd come home from school today and find a new tree in the living room," Ethan confided that evening. 

"Eeth. It's a week until Christmas. Do you think I have time to completely take apart this tree and set up another?" I exclaimed. 

"But this tree is sooo bad..." he whined. And there we had it. The day had come full-circle.

The next morning began with more of the same. "This tree looks like a dead man's fingers," Ethan said glumly. He had trouble motivating himself to get dressed, he was so upset.

"Look, you're going to be late for school. You HAVE to get dressed," I said through clenched teeth.

"Ethan, the tree discussion is closed," Dan added.

He lay on his bed, staring sadly at the ceiling. I was starting to lose patience.

"Listen. We can't do anything about the tree. But there are LOTS of people this Christmas who can't do anything about things that are really, really sad. Like maybe they lost a loved one. And they can't do anything to bring them back, and it's hard for them to celebrate Christmas."

"You're not helping me!" Ethan exclaimed.

"I'm trying to give you some perspective," I muttered.

That evening we sat in the dark for awhile looking at the glow of the tree.

"I see more webs," commented Chloe.

"Mom, can we put that yellow caution tape around the tree until Christmas morning?" Ethan asked, as more fell off, inexplicably. This time I saw him cracking a smile. And a little laugh. Progress.

It was time for Ethan to go to bed. "I'm just worried because I don't know what the tree is going to look like on Christmas morning," Ethan confessed. "I'm so worried about it."

"You're worried because you don't know what's going to happen. You can't predict what's going to happen," I told him. "I understand. We all have worries like that. It's one of the hardest things about life because we don't know how things are going to turn out sometimes. But we can't let that steal our joy."

"Can we pray the needles stop falling off the tree?"

"We could, but that's nature, Ethan. How about we pray instead for peace? So that no matter what happens, we can be a peace with this, and you can sleep instead of worrying about the tree, and we can still enjoy Christmas. That's what the peace that passes understanding that they talk about in the Bible is all about."

And so we did.

Today, needles are still falling. We're soldiering on towards Christmas. And Ethan was able to leave for school with a smile on his face.








Saturday, December 8, 2018

We'll Always Be Broken

This year we decided to be traditionalists and cut down our own Christmas tree. It had been a few years. Dan Googled this place in town and as we turned the corner I got a sinking feeling in my stomach.

"I think we've been here before..." Vague memories of a scruffy, diseased tree that lost its needles way too quickly came slowly back to me. There was no turning back now. The tree farm owner had spotted us and waved, grinning happily at seeing another customer.

"Where are the big trees?" the kids were asking from the back, craning their necks.

You know it's a bad sign when they're actually advertising, with a hand-written sign, "Charlie Brown Trees."

They weren't ALL Charlie Brown trees. Just most of them. But after walking for awhile we found a big fat one. Cutting it was difficult because the needles were so sharp.

"Aren't these the needles that really cut us all up?" I asked, but the saw was already through the trunk. We were committed.

Getting the tree onto the roof of the van took a considerable amount of huffing and puffing. So did getting it off the van at home and into a tree stand. Then there it was hogging a corner of the living room until we could decorate it the next day. "Let's call her Plumpy," someone suggested.

The next afternoon we put on Christmas carols and took out our decorations.

"Mom!" Ethan called out, just as we were about to start. "There's a spider on the star." He looked more closely. "There are LOTS of spiders on the star."

Cue screeching. Someone got a broom. Chloe ran to get her little broom and started waving it around wildly. I got the vacuum, ready to attack. "It's not working!" I cried out. Those creepy critters kept crawling away and getting to the back of the star where I couldn't reach with the attachment.

Dan took down the star and he and Anna started counting the little spiders on the star ("two, three...eight, nine...twelve"). We were horrified.

"That star is NOT going back up on the tree," Anna insisted when it was washed out.

"It HAS to!" Ethan yelled. "That is our special star." After a few minutes of arguing, he started crying. I mean wailing. "We HAVE to put up that star! It's been up forever!"

"Ethan, we got it last year. It's hardly a family heirloom," I said. It took him a half-hour to calm down, and he and Dan went off to Job Lot to get a new star.

A few days later, as Ethan was glancing over at our nice, plump, scratchy tree, Ethan said: "Mom? There's another spider on the star."

Now I knew it. The tree was infested, not the star (I'd thought maybe spiders had gotten into it while it was stored in the basement). The horror.

Ethan looked at me expectantly. "Well, there's nothing we can do about it now," I sighed.

Two days later I was out doing a freelance job and Anna was watching Ethan and Chloe. I arrived to Ethan running out the door, barefoot and stressed.

"The tree fell over!" he shouted. "I was just trying to fix the star from being crooked and the tree fell and water went everywhere and there's ornaments all over the floor!"

Well. Welcome home.

Inside a sorry sight awaited me.

"Thank God you're home," Anna said. "He was running around crying and went outside and hid in the tree."

"I'll help, mommy!" Chloe kept saying, trying to pick the mammoth tree up while dancing around glass ornaments on the floor in her bare feet.

Ethan, Anna and I tried to push Plumpy back up, to no avail. We lay on the floor and attempted to fiddle with the screws on the tree stand. Exasperation and sweat followed, and the tree remained slumped on the floor. The lights started falling off, too.

"This tree is cursed," I decided, vowing we were going back to that simple place next year right on Route 5 where the trees had no spiders, stayed in place, and had needles that didn't cause allergic reactions on my hands. I had tiny cuts everywhere.

Eventually Dan righted the tree, but it still didn't look right. It leans...but no one dares fiddle with it. The ornaments are clumped in various places because Chloe keeps taking them off and putting them somewhere else. (She's also lost half of our stockings, at the moment.)

Our tree debacle reminds me of past ones, and there have been many: the gravy 911 a few Thanksgivings ago; the time our toilet broke while I was fighting to bake a pie crust; many cookie experiments gone awry; the bag of goodies that we gathered for homeless people that ended up being something we'd snack from in the car since we never gave it away. To this day, Chloe calls the brand of gum that was in it "homeless gum."

Those are the lighter ones. But we all know the dramas that have played out over so many holidays and family occasions that shatter us all the more because they happen at those times that are supposed to be "joyous." Missing faces and disagreements and addictions and illness and loneliness and broken promises and things not being anything like we thought they'd be.

"I can't fix this tree," I muttered to myself. "It's a mess."

Everything's always going to be broken, I heard in my head. This world. Our hearts. Our plans and dreams sometimes.

And that's the point. That's the ultimate Christmas story.

The manger and the savior. The ultimate gift. Peace, goodwill and reconciliation with God. The promise, the truth that we can't do this on our own -- and that whatever we can't fix, whatever we don't see realized, will one day fade in the light of God's glory.

Amen.


There's a better place
Where our Father waits
And every tear
He'll wipe away
The darkness will be gone
The weak shall be strong
Hold on to your faith
There will come a day
There will come a day


- Faith Hill, "There Will Come a Day"










Tuesday, November 20, 2018

Resilience and Persistence

Our youngest one has a personality unlike anyone else in the family. Oh, Chloe. In a family of introverts, she's the outgoing one, always looking for friends and ready for a party. She's blunt while the rest of us border on passive-aggressive. She whines (wait -- so do I and the kids, so scratch that). She will NOT take no for an answer. She's an optimist and a problem-solver (well, Dan has some of those traits, too). I tell her she should be a sales person because she will not stop needling and bartering to get what she wants. And she's four!

In stores there are times when she sucks every last bit of will out of me. It's one thing for a child to ask, "Can I have that?" several times. I'm used to that. I remember that, when Anna and Ethan were younger. But Chloe has taken this to a whole new dimension. I honestly did not know a child could ask for something as many times as she does in the space of 60 seconds, in so many varying ways. "No," is returned with "Just ask the sales people what it costs" and "What about next time?" or "What about THIS toy?" and on and on and on. I dread going into stores with her in a way I never did with the other two.

All of this feel a little old at times -- the tears, whining, sobbing, lying on the floor, complaining and begging.

She is relentless, I thought one day recently. But then in a flash the sentence came to me again. She is relentless. It was like watching the coin flip. You could call her behavior stubborn or strong-willed. But the more I watched her in action the more I saw it as an ability to not be deterred or defeated. Big deal, you might think. What's so great about someone who digs her heels in?

Well, possibly lots of things. We don't like to think about our kids being unflappable or unmovable in terms of bad choices or behavior. But what about in pursuing a dream? Overcoming obstacles? Facing discouragement? Suddenly being relentless isn't such a bad thing.

One day Chloe was trying to figure out how to do something; I think buttoning her pajamas. "I can do this," I heard her whispering to herself. "I'm going to do this." My mouth nearly dropped to the floor because I realized no one had really taught her to be this way. She hadn't tried to button her pajamas before. Dan and I hadn't constantly been cheering her on. What came out was something hard-wired. She was espousing positive self-talk without having to think about it. And as someone who has always naturally spouted out the opposite -- "I CAN'T do this" -- I found this absolutely amazing.

Somehow watching this made me ease up a little on myself. I'm not sure I've ever pep-talked myself without consciously forcing it. I'm a pessimist. That's my natural leaning. And while I don't need to stay there, there's something comforting in knowing that some people are actually born more or less confident. I always wondered why I had a hard time psyching myself up to do stuff. It's not natural to me, just the way it's not natural for Chloe to want to be alone if there are friends to play with. It's okay -- but we can all make adjustments, as necessary, in order to learn and grow.

Since Chloe was a baby she's had this uncanny ability to fall down and then laugh (unless she's in a mood to milk the incident for all it's worth). She epitomizes "bouncing back" sometimes. If we're at the store and she doesn't get the toy she wants, she'll leaving telling herself, "We'll get it next time." She thinks of something positive to end the experience on a high note.

Meanwhile, I have often reacted to disappointment or discouragement not unlike George McFly in the Back to the Future movies. You know, when he stumbles on up to Lorraine and almost gets the courage up to ask her to the Under the Sea dance, only to see the bully Biff burst into the room, and then slinks away quickly, like a dog with its tail between its legs.

Unflappable. Not perturbed. Resilient. Can I have some more of that, please?

Years ago I bought an amazing book called The Unthinkable. It's all about people placed in various tragic circumstances (9/11, a mass shooting, hostage situation, and so on) and explores why people respond the way they do. Of those who had been through something traumatic and were handling life well, a common trait was resilience.

"Resilience is a precious skill," the author writes. "People who have it tend to also have three underlying advantages: a belief they can influence life events; a tendency to find meaningful purpose in life's turmoil; and a conviction that they can learn from both positive and negative experiences."

Yes, yes, and yes. This is grit, as Ethan's first grade teacher liked to emphasize. This is perseverance. This is living like the victor rather than the victim. This is what can come out of my feisty, strong-willed daughter -- if we just keep fine-tuning and pruning. This is what I can learn, as I'm along for the ride.






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.







Monday, March 12, 2018

Losing, Winning & Learning

Everything was going so well at Ethan's last basketball game of the season, only then it wasn't.

They'd been ahead all game, until some kid on the other team made an amazing shot. Ethan had three chances to shoot...and ALMOST got a basket every time. The clock was ticking down. The kid on his team who had almost never made a foul shot got them within one point...and then someone made a dumb play that gave the ball away to the other team. Everyone was screaming. Kids and parents arriving early for the next game were standing on the sidelines yelling. Dan and I looked at each other, knowing where this was going.

At the buzzer Ethan was off on the other side of the gym, refusing to slap hands with the winning team. Then he was gone -- outside -- and Dan was after him with me not far behind. We found him crumpled into the pavement on the side of the building. He would not be consoled: he was screaming, flailing. Ethan was mad at the world, and I couldn't figure out for the life of me how to help him.

I hated that basketball was ending this way. All I could think is for all the time he spends in Social Skills group talking about expected behaviors and identifying emotions and challenges, how I wished in the actual moment he had more specific strategies to actually put to use.

I tried to tell him to take deep breaths. I threatened to take screens away if he didn't calm down. I attempted to give him perspective by asking him to think if a game loss was equivalent to say, someone dying. I told him someone would call the police if he didn't quiet down.

Everyone else on the team was driving to the pizza place for an end of the season party that I hadn't heard about because somehow, I wasn't receiving the coach's texts. That was also why we'd missed the practice the night before. To say we felt out of the loop -- in more ways than one -- wouldn't be lying.

After about 10 minutes we managed to get back to the car. I knew we wouldn't be going anywhere with the team, and not that it really mattered. Ethan didn't have any friends on the team and wasn't particularly attached to the coaches. While not being there wasn't a huge deal, I kept thinking about how many times, in ways much bigger than what we were dealing with, that autism can isolate families. A meltdown means leaving the party...or not making it to the gathering. One little change or "off" day or perceived wrong and suddenly -- poof! Plans disappear. Relationships die off. Connections don't happen.

A side note: if you know a family in a situation like this, don't let it happen. Go to them, if it's easier. Make accommodations. See what you can do to help. To the best of your ability, continue to be welcoming and inviting. Help families to feel a little less alone.

But in our case, I was thinking more about how to help our son -- because what's cute at three is inappropriate at 10 and could become downright dangerous at 15. He's not a violent person. He's a good kid. He just struggles at times with emotional regulation. We just want to know how to help him navigate those waters.

We tried doing a "post mortem" about everything later on, but Ethan wasn't into that. He was wrestling his sisters and dancing to music -- he didn't want to talk about what had triggered his feelings eight hours before. He did tell us one thing -- that everything was so much worse because he thought the whole game that they were going to win. And they lost by one measly point.

My mind flew back to Red Sox/Yankees in the playoffs, Game 7, 2003. The Yankees' Aaron Boone smashed an extra innings homeroom off Tim Wakefield to send the Yankees to the World Series. Gut punch. Utter frustration. Lack of control. I imagined watching that and being autistic, feelings welling up, emotions swirling over. I KNEW what he'd been feeling at the end of the game. I just wish I knew how to help him harness it a bit.

That night, as I was saying good night, I told him despite everything that had happened, we were proud of him, and I was thankful he was able to play. He might have not had a great season, but his skills DID improve -- and maybe he had taught others a few things along the way.

"You're an ambassador, Ethan," I said, before I even realized I was going to say it. "You're an ambassador for autism. Those coaches may have never had a child with autism play for them before. And those guys running the scoreboard? The ones I asked to not let it buzz soooo long and loud if they could because it bothered your ears? Maybe all of these people understand a little better. And the next time they meet someone with autism, maybe they'll be compassionate and have a better idea of the types of things you deal with."

I didn't want to act as if he had the whole world resting on his shoulders, but I thought he needed to know.

"When you tell us what's going on and why you feel the way you feel, it helps us understand autism better," I told him. "And it helps us understand a little bit more about people with autism who can't speak up for themselves, like Uncle Andy."

He liked this idea. I could see him perk up. He was listening intently. "God has an important purpose for your life," I told him. "Don't ever forget it."

And suddenly the sort of a mess of a day we'd had didn't seem so bad, in the grand scheme of things. No, we still don't have all of the answers to help him with controlling himself. As it is I need to check to make sure his social skills group hasn't slipped through the cracks again. But I am trying to follow my own advice. The bigger picture. Maybe he wasn't great at basketball or handling disappointment. Maybe just being there had been the important thing -- for not just him, but the people who coached him. For them to see autism in person -- not a stereotype, but as something that can sometimes simmer under the surface and then rear up at difficult times -- maybe that was invaluable. Maybe he will help other people make fewer assumptions and not just pass autism off as "bad parenting." Maybe he will help paint a clearer picture -- that autism may be Rain Main or someone rocking in a corner or it may be a child who just doesn't look you in the eye and has trouble paying attention if the buzzer's about to go off and melts down at a loss and won't shake the other teams' hands not because he's a brat but because he just feels too much, all at once.

At the end of that game, Ethan's team had a legitimate chance to win. Ethan was the weakest shooter on the team...yet the coaches kept him in the game. They knew how badly he wanted to score just one basket this season. They didn't send the subs in. They let him be out there until the very end. Ethan never scored and they lost and he cried, but most of all, THAT is what I will remember. They gave him a chance. They gambled and lost, but maybe...maybe they didn't lose after all. Maybe none of us did.



















Monday, March 5, 2018

Just a Glimmer

We've had our share of fails when it comes to the kids and extra-curricular activities. Actually we've had mostly fails. With Anna alone we tried gymnastics, dance, Brownies, sewing, 4-H and now theatre. Thankfully, theatre has stuck. Ethan has only been interested in sports, and that alone has had its challenges. Until this year he's been fairly adamant about not trying anything else, and we haven't wanted to push it.

Don't get me wrong -- I am not a parent who is overly concerned about signing my kids up for activities. I don't worry so much about them being well-rounded or needing to know now what they want to be when they grow up. In our case, it's really a matter of asking them, at least once they're getting into upper elementary school, to try to do at least ONE thing that gets them out of the house and out from behind a screen.

With Ethan I'll admit there is a little douse of added concern involving areas of interest and how he might find something that would also help him get a job one day. I don't like having to think like this when he's 10, but I feel as if I have to. While we don't always need to be drilling it into his head, he needs to be practicing things like handling disappointment, eye contact, learning to do something that isn't his preferred activity, or just broadening his mind beyond the things he really, really likes and likes to fixate on.

Sports have been great for the emotional aspect and teamwork, but we've also wanted him to get involved with something that would tap into his love of computers. Or music. I've hoped he would take piano lessons for a while but he refuses (clarinet at school is enough). The robotics, STEM-type stuff isn't quite what he likes. But when his school sent a flyer home about an after-school club where the kids would learn how to code and produce some kind of music video, we knew he HAD to do it.

Of course he didn't want to. "That'll cut into my screen time," he protested. He hates having anything happen after school. Getting him to sports practices is always an event.

"The whole club is screen time!" we shot back. After much hemming, hawing, and whining, he said he'd go (which was good, because we were going to make him).

We knew we were onto something the first day. He came out of the school with a big smile on his face and jumped into the car. "I LOVED my class!" he said.

I nearly drove off the road. This never happens. Ethan is not one to be overly enthusiastic about things that don't involve winning a game. When we got home, he wanted to jump on the computer to show us what he'd done and then keep working on it.

And that's what he's been doing now for about the last six weeks. In some ways, we're surprised (we've tried to get him involved with coding before, to no avail). I'm guessing the key has been introducing him to coding through music. He's very musical and especially interested in sound, video game music, electronics, sound effects, and so on. So he's spending a lot of time right now in this coding program looking at other people's projects and finding ways to put his own stamp on them -- things like his own version of Guitar Hero set to songs he likes or scenes from a video game with different sounds. And explosions. Lots of explosions.

Ethan is not a savant and isn't sitting there hunched over a computer programming his own games from scratch. We still don't know at this point exactly what he will end up doing or how or how challenging it will be for him to stay on task and learn in a college setting someday, but we are just excited to see him excited about creating something rather than just consuming.

But more than that, it's especially rewarding to see him excited about something that he's created. I mean, excited enough to talk faster and longer than usual, with a sparkle in his eye. And yeah, as a parent it's immensely satisfying to prod your kid to do something that he actually then ends up loving.

The other night Ethan came across a song he wanted to use for a new project and he began playing it for all of us. But he didn't just play it (via our Alexa) -- he started dancing. This song was full of all sorts of electronic, synthesized sounds (his favorite) and he couldn't get enough of it. Next thing we knew he was dancing all over the TV room.

As I watched him I realized how rare it is to see Ethan dance. It's not normally his thing. And autistic people aren't really known for being dancers. But there he was, bopping around the room, doing utterly ridiculous moves, acting silly and outrageous. I realized than even better than seeing him excited was seeing him happy, full of joy and energy. Without the coding project, we wouldn't have had the song or the dance. We wouldn't have had the moment.

As he danced he looked a little like that feeling you have when you're doing the thing you love to do. You are completely immersed in the moment. And you just can't get enough.

He's only 10 years old, so I don't know. I don't know, but maybe we've seen just a glimmer, just a glimpse of the path he might take. And that's all we really need right now.
















Saturday, February 17, 2018

Sick Days

Years ago when I worked for a hospital's Marketing/PR department, we attended a retreat featuring two consultants whose talk centered around "customization." Their point, which proved to be accurate, was that the trends were pointing to people more and more wanting an individualized experience, whether that came to retail, vacations, or even healthcare. The key was to tailor products towards meeting each person's unique needs or preferences -- and to make that point they gave us little goodie bags based on a series of questions we'd answered in advance. Among my special items were chocolate chip cookies (a favorite food), journal (for my love of writing), and a C.S. Lewis book (relating to someone, dead or alive, I'd said I'd like to meet).

When it comes to our kids, I don't think any one of us needs a high-priced consultant to tell us that a one-sized approach does NOT fit all, and it's extremely beneficial to tailor everything from your discipline techniques, rewards, or praise to each child's individual needs. And while back at that retreat years ago I never quite understand how healthcare could be highly customized -- I'm learning that in our house, one of the areas in which they need drastically different approaches is, of all things, when they're sick.

I have always been one who likes to pamper people when they're not feeling well or hurt. Some people probably call it fussing. I most likely get it from my grandmother, who was always fretting that people were too cold and giving me St. Joseph baby aspirins for my sore legs when I slept over. I like to tuck blankets around people and bring them drinks. I go overboard with temperature-taking. This is a way, in my head, I like to show care and concern for people, so it came as pretty much a shock to me when Anna was little and hated it all.

When she was sick, she was in denial. She refused to stay in pajamas. She wanted no pampering; no blankets. She'd do everything to fight taking a sick day from school, including, to our frustration, going to school with strep throat and ear infections (we would learn later) several times when she was younger.

In time I realized that I couldn't take Anna's reaction when she was sick as anything personal, and it was pointless to continue fighting. We focused instead on her being at least truthful when she was not feeling well, and not over-exerting herself or infecting others because she wanted to act like she was fine. Trying to force my way of parenting in this regard wasn't really helping her -- just stressing her out.

Now Ethan on the other hand doesn't mind being fussed over at all when he's sick. One of the greatest ironies is that my one kid on the autism spectrum can be very cuddly, especially when he's not feeling well. So I go all out with my blankets and medicines and warm drinks and books and I'm in all my glory. Except, of course, that after a while it's awful to see your kids sick and you just want them well and themselves again.

So now we come to Chloe, who just turned four and is getting smarter and more observant about the way the world works. A few weeks ago she jumped off the couch and hurt her foot. Of course it was one of those things that happened when no one was looking so it was hard to understand exactly what she did. All we knew is that she was limping and said her foot hurt. I was impressed she willingly let us put ice on her and sat for quite awhile uncomplainingly. The night I fussed over her and putting her foot up on a pillow and gave her some medicine because she said she couldn't fall asleep because it hurt.

The next morning she wanted me to carry her up the stairs so I figured it was time for a visit to the doctor. Interestingly, as we headed into the doctor's parking lot she was limping, but in the office she was able to jump up and down without an issue. The doctor was unsure and said we could get an X-ray if we wanted to or hold off -- and I would have undoubtedly waited, except, when I was a kid I dropped a brick on my foot and broke it and walked around with it broken for a week. Since I was always the type to complain about sore legs, people thought I was just whining again. Plus Chloe had starting limping again as we walked out to the car.

We got the X-ray. Everything was fine. The next morning she was jumping around like nothing had happened...until I asked her about her foot. Her demeanor changed. "It hurts still," she said in a downcast voice. She grabbed onto it and started rubbing. The wheels in my head started turning...

...and were still turning a few days later when Anna came down with a cold. "My throat hurts," Chloe announced. I took her temperature. Normal. She was eating fine. "I think my nose is a little stuffy too," she told me, giving a few extra sniffs for emphasis. For days she kept saying that her throat hurt and that she had a cold, although she was otherwise her regular self.

A few days later someone had hurt their finger and of course we all asked the question, "Can you bend it? Yes? Then you're okay." So not long after that I heard Chloe calling to me when I was in the bathroom. "I hurt my finger! I can't bend it!" she added for extra emphasis. Her finger had the tiniest scratch. She could bend it just fine. The more closely I looked, the more I realized the my youngest is quite a little actress. I also realized that as the youngest, she loves getting attention more than almost anything.

So, once again customization comes into play. With Anna, we used to have to convince her she was sick. With Chloe, we'll have to downplay everything.

This makes me laugh a little, because my mom and I have a long-standing joke that when I was a kid, I was always whimpering over something, and she was always saying, "You're fine."

But now with Chloe, I know. That's what she needs to hear sometimes. "You're fine." She doesn't need blankets or Band-aids (which she loves to take out and stick on herself). She needs to learn to speak up only when she really is hurting.

With our kids it's not always about relating to them on our terms or preferences. It's about what's best for them.

I love to pamper when someone's sick, but don't pamper Anna because she doesn't like it.

I love to pamper, and can pamper Ethan that way because it's what most helps him when he's not feeling well.

I love to pamper, but can't pamper Chloe as much as I'd like because she will learn to milk it for everything it's worth.

Customization. While it hasn't translated over all that well into healthcare at this point, I can apply it to how I care for my kids.

I think as parents we all learn this. There is no "one size fits all" approach. Ever. And that's a good thing. That's what makes them the unique and fascinating individuals that they are.
































































Thursday, February 1, 2018

Be the Squeaky Wheel

Ethan has very few accommodations as part of his 504 plan (which went into effect when he switched out of special ed. over a year ago), but one has been to take part in a social skills group with peers.

A social skills group is vital for Ethan. Is it essential? Probably not. Realistically I'd say it's most important that he can speak, read, write, and do everything he needs to function in society. But to function well, social skills are essential. And the older kids get, the more complex and nuanced communication becomes.

If the school had no social skills group available, we'd take him somewhere else, most likely. But they do. They offered it, they put it out there. I probably wouldn't desperately fight to get him the service when there are kids out there who need more. But again -- I mentioned it, they agreed without hesitation. The schools have provided Ethan with an awesome curriculum (Social Thinking) since second grade, and it's taught him (and us) a lot.

Which is why I became pretty infuriated to find out it wasn't happening.

This isn't the first time something like this has gone on, and I know other parents have dealt with this issue, too. And I'd really love to know why.

I believe it's important to extend grace. When the school year begins, of course everyone needs to get settled in with schedules and staffing. I also understand that some weeks, things just happen -- snow days and sick days and field trips and the schedule gets turned upside down. Did I ever expect Ethan would be meeting with his group every single week from day one of school? Of course not. But recently I learned that since school started in late August, he'd gone to his group about three times. And hadn't for months.

I'd started with an email to the person running the group about three weeks after the start of school -- just a "checking in" to see when the group might be starting up. There was no response. Finally sometime in October I heard back that the group would be launching. Great. Ethan came home with a worksheet one day...and then nothing.

I sent another email. No reply. And then when we were meeting with Ethan's developmental pediatrician at the end of November and she asked if he attended a social skills group, he said no.

"What about the one at school?" I asked.

"Oh, we haven't met for a long time," was the reply.

Back to the email again. This time a few days later I magically got a response about what had gone on in the group. I got hopeful. They met up a few weeks later again. But then...you can guess how this goes. Forgive the rude analogy, but it's kind of like kicking a horse to get going, and it trots for a few steps and then slows to nothing once again.

As we moved into January and Ethan said his group still was not meeting, I realized it was time to take things up a notch. I hate doing this, for many reasons. I don't like burning bridges. I don't like having to go over someone's head. Sometimes this feels like "tattling." I'm not naturally an aggressive person. But we all get a little more aggressive, I think, when it comes to our kids and helping them to get what they need.

I wrote the principal an email and basically laid it out there -- this was unacceptable, this was not what we'd agreed upon, and something needed to change. And wouldn't you know, two days later the social skills group kicked in again. And I've received an email update on what was covered, for three weeks in a row now.

Recently Ethan mentioned in passing the other kids in the group, and that's when it really hit me -- this wasn't just affecting him. These other students had also been missing out on the group, and without my speaking up, THEY would still not be receiving the help they need, either.

When Ethan first started in school, I heard it again and again: Be the squeaky wheel. Keep on them. If they know you're involved and paying attention, they'll stay on top of things. They're more likely to give you what you want. Make sure they know you're watching, that you're going to fight for your child.

This kind of sneaky, almost combative language put me on edge. I hated the feeling of mistrust in the air. But sadly, now I understand it. And sadly, I've heard story after story after story from other parents.

I don't want to bury the schools here. I don't want to believe that they do the bare minimum, that they don't have kids' best interests at heart. I want to believe better. I just wish someone would explain to me why parents have to constantly be vigilant or fear their child won't be getting the number of speech hours they are supposed to receive, or OT, or PT, or a social skills group? Many of these children can't speak for themselves. Many parents ask for notes and don't receive them. So, how will they ever know?

Something is wrong here. The answers probably are complex.

So until this is figured out, yes, I will be the squeaky wheel, and more than that, I will encourage the parents with children who are younger, parents who are newer to this, to do the same. At the very least, if you don't want to live life as a cynic, trust, but verify. Every single time. You may be surprised what you learn.




































Tuesday, January 9, 2018

Beating the Buzzer

Last Saturday was Ethan's first basketball game, and he was a little nervous.

I couldn't blame him. His team hadn't had a practice due to a snowstorm, he'd never met his coach, and had no idea who was on his team or if he'd know anyone. He'd just moved up a level in the league, which meant he was now with fourth and fifth graders, all boys (no more co-ed teams). Some of these kids play basketball all the time. Ethan hadn't picked one up (except for gym class) since last year's season.

We walked into the gym in the middle school, where two other teams were about to finish their game. I looked around for someone who might be his coach and saw a guy holding a bunch of yellow shirts, but wasn't sure if I should go up to him. I thought about Googling the Thunder (the name of Ethan's team) to see if they wore yellow shirts, since I had no idea.

That's the funny thing about basketball. Dan and I rarely know what's going on. We're learning a little. But half the time there are whistles and buzzer going off and we have no idea why. There is so much I still haven't picked up about the game.

Oh yes, buzzers. As we stood there, I looked up and saw we were under a giant scoreboard. Sure enough, within a matter of seconds, the loudest and longest buzzer in the world went off right over our heads.

Ethan recoiled and grabbed his ears. Chloe covered her ears. It WAS loud. And annoying. I could see he looked horrified.

"Why do they have that buzzer??!" he asked.

I tried to distract him. "Look! There's one of the kids in your class playing!"

He was having none of that. "That buzzer is horrible!" he exclaimed. It went off again. Chloe started whimpering. "I don't want to be here," she whined. Ethan had made a beeline for the hallway, pushing past more and more people who were coming in for the next game. His game. Which was supposed to start in about 10 minutes.

He stood in the corner near some lockers. "I am NOT doing this!" he said, panicked. "Why did they have to have a buzzer like that? They just ruined my basketball season!" Last year, in a different gym, there'd been no buzzers, just whistles, which he'd gotten used to after a while.

And so we faced the autism curveball. All parents of people on the spectrum will understand this. You plan for something, you go somewhere...and maybe they change the schedule. Or they don't have the food your child was promised. Or they play by different rules.

Or the sound that most irritates and stresses your child is going off and completely distracting them and sending their anxiety sky-high.

Autism curveballs can change the mood in the drop of a hat. They can ruin a day. They often require quick-thinking and creativity. Sometimes bribery and cajoling. On those days you can't get past them, they're very deflating.

We are grateful to not have to deal with too many autism curveballs, and most of them are minor in nature. But buzzers are Ethan's nemesis. We've been dealing with fears of our dryer buzzer for months. A few years ago it was the buzzer the art teacher set off in class for bad behavior. Even the musical "Simon" game was an issue for a while.

Dan walked in at that moment, as Ethan was hunched in the hallway. More and more people huffed in from the freezing air outside and filed into the gym. "He's saying he doesn't want to play," I said. "It's the buzzer!"

"Ethan," I pleaded. "You can't NOT play basketball because of this. Please. The buzzer won't be so loud when you're playing. And there's a clock. You can SEE it running down. It's not like the dryer, when it's unexpected."

"WHY ARE WE STANDING HERE?!" Chloe was wailing. In that moment I wanted to just go home.

"You can do this," we urged Ethan. I gave him a hug and said a little prayer. Somehow he managed to slink his way back into the gym. We approached the coach (who I'd had no chance to give a heads up to about Ethan and autism) and within a few minutes Ethan was on the court trying to have a two-minute practice with his team before the game. He kept looking at the scoreboard. I felt nervous...what if he stopped playing and dropped the ball to cover his ears and his entire team starting yelling at him?

"See if the buzzer guy can help us out," Dan suggested, which I hadn't thought of. I walked over to the sidelines where a guy sat pushing buttons. I hated to be THAT parent, but it was worth a try.

"Hi there," I said nervously. "Are you running the buzzer?" Because I THOUGHT he was, but again, with basketball, I'm rather clueless.

"Yeah," he looked up expectantly.

"Um, well, I completely understand if you can't do this, but is there any way you could make the buzzer just a little shorter or quieter? My son's on the autism spectrum and buzzers are his biggest fear. It's really distracting to him."

The guy's face broke into a smile. "I totally understand. I have a nephew on the autism spectrum. I'll see what I can do."

I wanted to give this stranger a huge hug, relief washing over me. We found seats in the bleachers, sat down...and watched Ethan's team get beat. Kind of badly. I want to say the final score was something like 19-8.

Except -- Ethan was winning. We watched him out there, trying to simultaneously listen to his coach and keep an eye on the clock so he'd know when the buzzer was going to go off. He was doing it. We fret and we stress, but often he is able to pull it together and do what he needs to do.

The buzzer, I have to say, wasn't all that much quieter or shorter than it had been before. But I'd made a connection with someone who understood, someone who was willing to help out. Sometimes that's what we need most of all in a moment of stress.

Yes, Ethan has a lot of practicing to do. The whole team does. But as we walked back to the car after the game, I told him I was more proud of him today than if he'd won that game.

"You pushed past your fear." I high-fived him. "You did it!"

Over time I have gotten a little better at not overlooking the supposed "little things" that people on the spectrum do to get by in a typical world. They need to be celebrated. Other people may not get it, but they don't live it. They don't know the way an autism curveball can throw a person, throw a family, into left field for the day or even more.

So we cheered after the loss, because on that day, at least, we'd beaten the buzzer.